The Ho
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Or PgDn / PgUp Keys
[ due to pop-under becoming pop-over some browsers ]
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We WILL have perfect freedom again if all help us...
Please DO go ask for your 2 x Shots, and Booster shot later if required !!!
Truly, anti - vaccination believers are completely mistaken in all they claim on their campaign !!!
TOO MANY LIVING INSIDE A NORMAL HEALTHY BLOCK DIAGRAM WITH CRAZY LITTLE THEORIES ATTACHED !!!
. . . just simply not helpful for our combined humanity that needs to survive all together !!!
. . . please help all fellow people become protected from Covid-19 Delta !!!
. . . support the call for Full Freedom through vaccination !!!
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...eat your banana !
PERSONAL HEALTH
Like your computer - But just for you !!!
Don't forget to store your expensive - 25°C Medicines in the fridge ! ! !
DON'T GET A CHILL . . .
Take care of your crohn's immune system as our body's cross over into the summer temperatures !
You can still get a chill, or slight fever, by not wearing warm clothes in summer !Gives you the false feeling of your system being rundown !
Cold chills while sweating !
Keep Warm !
Fluids !
Eat !
The only measure we have for ourselves in this world, is if we have survived,
or are continuing to manage our pains, from day to day and each year.Forever Onwards . . .
News :
Crohn's sufferers running out of treatment options lobby Pharmac for new drugs
[ crohn's image for those who have never seen this before ]
Interesting for crohns...
behind-the-scenes-of-medicinal-cannabis-company-cannasouth
News : Gene Silencing
Computer Help :
Can we have some of the most helpful smartphone ' apps ' such as for health for laptops please ?
A thin usb pluggin sensor board on the back of the lid would be a great idea !Others could then have the similar tech opportunities too !
. . . in shop purchase only !
Telly : https://attitudelive.com/
A range of life challenged folks with their life !
. . . plays well in browser !
Ear Cleaning : Slowely twist the cotton bud against the wall of your canal,
...picking up wax debri along the way to a full cleaning !
[ ...avoid touching the very end, drum ! ]
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Well done this video ! ! !
Brilliant link to Gastrointestinal Anatomy video :
NZ Anatomy and Physiology 2 anatomy model walk through for digestive system
. . . a little fast but well presented, watch for better understanding !
. . . return there for your personal medical moments !
. . . or download if possible !
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F A R T I N G
. . . is simply the promise food is going through you . . .
. . . be happy about it, always . . .. . . ! ! !
We give thanks to Mr Crohn for realising our disease !!!
Quote: Named for its discoverer, the American gastroenterologist Burrill B. Crohn, who
described the disease in 1932, it can affect any portion of the digestive tract, from the
mouth to the anus.
Read : https://www.med.unc.edu/gi/ibd/the-names-ulcerative-colitis-crohns-disease/. . . be glad that others found whatever your's may be, back in history !
. . . helps us all survive as best as possible !
Question Of The Day :
What colour is the Original Bio Oil = Pink !
Recently you may have noticed that our scar oil has changed colour ?
Hopefully they still sell what we're used to ?
That colour reminds me of
antibodies on
a cut !
|
[ ...bring back the original please ! ]
[ ...had a better smell too ! ]
[ ...yellow, nope ! ]
Notes . . .
Don't forget to use your Windows Keyboard when leaning back sick !
Start > Programs > Accessories > Accessibility > On-Screen Keyboard
Simply open Notepad second, then click the letters, easy !
[ ...when you can only handle a mouse right now ! ]
[ ...bring your mouse down next to you ! ]
LINK : Folding Mirror Therapy Box
. . . may also help locked in syndrome ?
Avoid your biggest nastiest abdominal pains . . .
My One Main Crohn's Point : Avoid hard foods, or that dry quickly inside you !!!
. . . none tell you this before leaving hospital !!!
Go to BITS way below for add-on notes . . .
INTRODUCTION
Settled : From the moment before we begin to share our individual health stories with someone or many from outside ourselves and home, of poorly happenings, unchosen lifestyles, our audience needs to put their toolbox away, their suit changed into baggies, trucks for walking, and sit quietly to listen away from their own minds events. Anything else is disbelief.
Health is just one of the many individual experiences only you can witness first hand, like no one else.
I am in no way a medical professional or work with any medical company. I offer this advice through experience.
Once born we slowely begin learning to become Personal Managers of our Human Being.
Both in mind and in body we are considered responsible peoples for all that occurs.
To live a good life we must show care to ourselves first, and only then others too.
Here we will take ' First do no harm ' along to its long forgotten rightful place.
Look after your body and mind like there's only one of them . . .
Part of the real meaning of your life.
Your own health is one of the most individual experiences you can witness first hand, like no one else.
If you have a loved one or relative in hospital find out what they need to know for them, while they rest . . .
There may be very important things they need to learn for themselves . . .
Ways and means of looking after dressings, tubes . . .
Read on through my page . . .
I carry a ' tough love approach ' to health and the wider world, if you caused yourself to be damaged from unthinking behaviours when you very most likely knew better then you did not care to feel life's importance for yourself, or it's possible continuiing ramifications upon caring others lives. It naturaly comes from both false blame by others for lifelong injury sickness which was caused by other people doing their wrong part misdirected, and obversely a very real use of services where it should never have needed to happen in the first place by foolish or dangerous people. It's definately not expected that healthcare workers carry my same personal belief with them, and we each live with knowing the full truth forever. Including living with that illness/s and all it means, and so all are welcome to read here to find their needed help. Welcome along...
Jeff Phillips.
PAIN
Pain is your personal body indicator...Pain DOES exist, it's just waiting for us / you to know it...
NEVER let anyone tell you - you are not in pain when you absolutely know you are...
They themselves may know little or nothing about the existence of your pain and have no right to say this...
Never be happy to go along with discomfort or pain in your life. When we start out as youngsters we don't know any better, we literally don't care because we're too busy in our minds both from others expectations and from our own bullish view of what we are experiencing out in front of us every moment awake. And it's not until we allow ourselves to slow our impulsive selves down a little that we realize all of ourselves and body properly.
The whole range of pain in any one of us covers all the things and locations throughout that in their own time are trying to tell us something is happening and needs our attention. We soon realise it would only be a fool that overlooks one of these signals and goes on to being very unwell with whatever it is.
As individuals we each are required to be Managers of ourselves, and in our more modern world than decades before we can decipher what symptom we may have and this helps us know before we go to visit the doctor who can then perhaps provide a medicine.Defend the existence of your pain and then find a way to solve it so you can live on happily.
Never let a day pass before taking notice of a pain problem within.
It's your only body, you need to keep it for many years.
All sounds obvious, but don't live with sickness !
It stops your normal life from happening !
...no one bothers to tell us this !
...especialy the damaged !
...folks !
avoid adding more chronic pain to your daily total
because it WILL add up to too much
for your psychology
wears you
down
dry
RELIEF
No one ever speaks about taking relief . . .
So here is one good typical Pain Relief Clock for your life . . .
Basic : 8am - 12am - 4pm - 8pm - Midnight - 4am ( four hours before awake if needed... )Remember to ask before leaving consultation what you can take with these medicines...
Remember to take as directed, regarding foods or liquids or conditions...
Taking medicines General Guide only . . .
> 8am Breakfast
.
> 12am Lunchtime
.
> 4pm Dinner
.
> 8pm Relaxing
.
> Midnight Overnight
.
> 4am Excess pain
.
There is NEVER any one best solution, but you do need to spread your medicines across the hours !A stronger relief regimen combines other medicines for fuller pain peace.
They help your certain body areas instead of generaly.Speak to your dr or specialist.
PHYSICIANS
The modern world of bringing words out of the dark...
Orthodox physicians ascribe, by way of their teachers, and their teachers too, to all of us people having orthodox lives where nothing goes astray, or in any case not astray enough so much as to thwart our apparently normal lifetime from occuring, a life they can get with when they speak to us, a sure thing surely, however such life belief couldn't be further from the truth. The more modern we become the easier it can be to become unstuck in a multitude of ways, and in fact a range of them happening all at the same time. We hope not of course...
By describing a little about our life when we meet up at consultations, our Doctor or other medical helper can come to realize more about the world that exists outside their own sphere, and fallacies can be dispelled in the correct contexts.
No differently than realizing that our medical histories never reflect the severity of what our lives have imposed upon us or individual injuries both mental and / or physical have taken their toll upon our total being for decades to come.
Elsewhere i write of the hope that all people everywhere come to ' know all of life first ' before they assume how they believe we are compared with our living reality, do not ' do unto others ' as you believe might be spoken to you !
Life is not a fixed asset we make use of daily, all good folks !
Keeping an open mind is paramount.
Honesty, both ways.
IMPORTANT 2021
Post Abdominal Surgery Hot Towel Recovery Room Procedure.
Appologies, but before this page properly begins...
- Hospital and medical operating staff, please read and be aware: Separately, a far more important suggestion if i may, particularly after needing to do my own research into a matter because no willing participation was forthcoming. Could i please call upon both Surgeons and Recovery Room Nurses to NOT trap the penile (including if priapism/pre-autoerect) area under the lower edge of any Heated Towel that is placed over post surgery abdominal stitches usualy for healing properties. It very seriously leads to both surface and deeper damage and pain to the male genitals for a number of months afterwards. Please ensure you keep the cathetered penile area away from heat after surgery, whether that means a cool total covering or taking gently to one side out of range of heat. This would have been posted earlier if it hadn't been for long term investigative difficulty reasons. I thank you in advance of future male patients who may suffer such as my own injuries but be saved by this information. While i have suffered this particular injury alone i do not doubt that other cases have existed previously, albeit unspoken too. Some years ago i suffered this exact fate and was unable to attend the toilet properly and wearing clothing for the first month was not possible, including trying to shower, or simply resting privately and not going out, there was much pain. There was other information that got in the way of this truth regarding other people but i persisted in finding out. Back then my only option was time limited to enter a complaint and i had already other existing medical issues in the way. There is no room for either embarrassment nor refusing acknowledgement for pain caused in health. For any other male with this happening right now use something like the OTC cooling antibacterial Micreme H to soothe the sharp pain, the deeper pain takes more time to leave, and the psychological takes another lifetime.
IF you are outside of the hospital system, no matter where you reside, please be aware these things happen.
It is of no concern if this type of incident has been addressed since, please always speak up.
Simply quote this page web address, and the above heading.
Soft skin steam burns are not fun !!!
Thank you for reading.
(JP8PM1MAR2021).
REMEMBER :
Your Crohn's Flare-Up can contain more than just the intestinal wall itself, the pain can also come from the combined food type acids/alkalines and resulting gas pocket buildup, including the solid food matter still lodged there !!!
Follow the various helpful tips by reading this page !
CROHNS SECTION 2020
Do the good body helping things...Keep yourself away from bad or unhelpful things...
Keep up your fluids always, whatever it is, tea, juice, water are all good...
Never underestimate the importance of any symptom, deal with each issue with thought...
Literally a new goto for those who have just had a Crohn's Resection, including Diverticulitis repairs after life...
- Telling yourself YOU CAN at the beginning means everything: YOU CAN do all of what medicaly needs to be done, it doesn't matter if you cry in front of it all, and others. The problem with poor health is you not only need to put up with some slow symptom coming on, but to go through a full length of time or more of sickness, all amongst friends and colleagues and public places, onto going through an operation to repair you, and still apparently have enough overall human energy months or years down that path to actually manage the condition, all while maintaining your actual life of daily chores and weekly tasks. So give yourself a mental boost so you can get through it all for self !!!
- For those outside new to hearing about IBD Crohns, is a chronic disease of the intestinal tract, and is experienced as either a minor burden all the way through to severe discomfort or pain, over the day and night through their lifetime. There is no cure, and is managed by the sufferer through mindful understanding of symptoms and timing of medications and diet methods. Among the regular symptoms are various difficulties such as issues with the persons immune system, small intestine wall structure and its make up, expansion of a part (or few) of the intestinal wall causing pain, blockages or buildup and associated bloating within the abdomen to name only a few internaly, and surface skin indicators externaly, including changes to nerve signals elsewhere. All of which presents extra difficulties for those with more than one existing illness such as daily muscular skeletal issues. Overall the person while remaining aware, cannot know when a flare up might begin, and is about being prepared for any eventuality whatever the time day, night, or very early morning hours. Often meaning an urgent call to action to slow the symptoms with learned means, or boarding an ambulance to ED, including possible surgery. It is one of the more time consuming diseases, requiring rest and preparedness for future issues as they can arise quickly with little or no warning. Normal life is required to fit in with the illness, not the other way around per usual sickness. The rest of this section and page are for sufferers only, providing tips and ideas to get through their personal life, and overall lifetime, completely. A bigger better view...
For me i have lived with this for a long while now but know a whole group of others are always coming on through...
I'm starting this new all in one crohns section because there's too many important things that are being missed in everyday know-how, no matter the coverage elsewhere in the world around us, it will also include side helpers...
Crohn's doesn't wait so in no particular order, from the mighty to the mundane, let's begin...- It's important for EVERY person to notice how their digestion works daily and should be taught in schools !
- YOU are the Person going through this, not someone else, without being rude make the point if you need to !
- And before i forget, it's hard to remember important details through operations and life, write your own loose notes about how things are going through your days, read back over to re-align self if you phase out with pain or problems. Easier for those who've been here before to write later but first timers need to write asap! We hear new terminology or medical procedures or medicine names for the first time ever and fast, write it down as you walk the hospital floor...
- If you've just arrived home, throw out all your old fridge and freezer food, it was expensive back then but this is now, when you have the energy go buy (or have delivered) just the foods that will help right now. Start with a simple chilled sweet green fruit slushy type like 'Kiwi Crush' that you keep frozen, it's soft and cool smooth for your s/i like a drink, has different flavours and is often the only type of thing you can eat straight away.
- When you get home throw everything in the corner of your room and have a nice warm shower for yourself and the nerves in your spine that need a helping hand with better quality signals to your organs. Then dress in light warm clothing and rest on your back with simple telly programmes or silence. A lite powder coffee with milk and sugar will give you warmth, energy, and help activate back your regular motions again. If straight milk isn't your preference then try 'Almond Milk' that comes in a pourable carton. Tidy your things later.- Finding your tablets or med's should be the only other thing on your mind right now. Find and line them up on your kitchen bench and familiarize yourself with how each one will help you. You'll need to just grab whatever one day and understanding how all your medications relate and inter-relate is super important. You don't want to be taking opposites at a time when only best course of action is required. Keep a new strict view to all your medications that come along.
- Peace is an absolute must have in order to listen to how your body feels. Whether you have family children and pets or apartment flatmates you need to let them know your own room is out of bounds when you're feeling unwell during a crohn's flare-up event where medicines and simple foods and peaceful rest on the bed are absolutely paramount. Not jostle or cause you to stumble while moving about through kitchen shower bathroom for the repair of your health.
- Flare Up's are your number one avoidance in life. A misinterpreted or misjudged bloating upon blockage not cleared by mindful medications can lead you very rapidly into an ambulance and hospital for yet another intestinal operation. Only by looking after our own momentary symptoms can we share the resources for others going through their very first crohn's ordeal in life, and we all know how that feels. Keep a mental note of how much you've eaten during each day.
- Keep your room permanently organized, your bed fresh and always made up, the floor and any chairs clear of objects for those times when a flare-up takes you out of normal life for a duration, you don't want to be stumbling over your own things when you're so very sick. When those events begin you need to be reading your emergency meds list up on the wall, and with taking those bigger reliefs you'll need to rest quietly alone, to live through this difficult experience.
- You will inevitably spend a few hours on some night into the morning awake with a cup of tea and medication in an easy chair to overcome abdominal discomfort before hopefully dropping off to sleep again in bed, one of the ways to move about without turning each room light on is to buy a clipon or ' hookon torch light ' to the V of your pj's collar. This helps direct light to your hands getting a drink at the kitchen bench, and walking back through halls and rooms. Try this shape : Camelion Travlite ...which has both a magnet and hook folded up behind it !
- Have as much rest as you can through your day so that you build your own reservoir of energy, not just for earliest morning toilet or tablet times but so you can get to your follow-up medical appointments on time too. If your body runs you down you'll soon be no good to yourself or the rest of the world including anyone who happens to rely on your good helping them survive some medical issues too. Rule is always look after yourself first no matter what, then help them.
- This also aligns with best practice for employment, it's that you simply cannot be of any help in the workplace if you are already at the end of your tether screaming out in more than one way with your disease pain to go helping anyone else. Don't go trying to be some hero but end up getting things wrong there and causing issues and then realize all for the sake of trying too hard you now need another operation to continue living - it's not worth it folks !!! Rest !!!
- Immediately vow to give up all your super fibrous foods like lamb chops and other s/i (small intestine) blocking foods, which include but are not limited to heavy breads, sausage meats and pasta even good old b/beans and spag' - trust me you are doing yourself a huge favour to stay away from massive abdominal pain in the coming weeks, months and possibly years. I myself never figured the full amount of pain you can get from heavy abdominal bloating !
- Next on the list is specific gaseous boiled vegetables that can build up behind a blockage anywhere along your internal pipeline and cause the most excrutiating pain you've never experienced yet. Read up on all those that may affect you personaly online. For me it was cabbage, brocolli, sometimes carrots but everyones system handles them slightly differently. Peeled boiled potatoes tossed in butter is way more friendly! And blockages themselves can start off with simple tasty peanut butter in your lite sandwich but actually drags very slowely along your lack of lining intestine.
- Go the lite easy path when you start out eating again, make up a few different flavoured jellies, with banana and a real ice cream like french vanilla for easy throughput and less discomfort in its travels through your system along to output. Take cups of tea that help calm the nerves at the same time, milk and sugar is usually fine. Fruit yoghurt is good too. For me the very litest foods are best because i also have a sleepy ilius that doesn't pass foods along normaly. Keep in mind at all times that continued variation is the key to not being glued up inside your intestines, don't just stick with one foods regime ever, change your menu out each day to something different, keeps you out of hospital and safe.
- If you've never bothered or put it off for whatever reason, go buy an avocado (half at a time), a red onion (one skin per), grate fluffy fine carrot (whole thing), fine grated cheese (half cup), flat leaf lettuce (small amounts), and lite mayonaise for a lunchtime salad along with (crustless) softest thin white bread you can buy. For dinner half a courgette and parsnip boiled with peeled potato and a butter poached egg gives you easy goodness. Think what's right for you and your ease of making, chewing, swallowing, stomaching, breaking down, absorbing goodness from, and difficulty at output.
- No point telling it nicely, toiletry can be a right pain in the proverbial. There's just no two ways about that! But you can make it easier for the experience, Have a handrail installed in your shower, and toilet, invaluable for resting your arm on while your wary body waits. Even buy a toilet seat cover, softer for longer. Let your wind and gas out every opportunity. You need to keep an eye on your eating of all foods and intestinal loading so you know your abdominal health. Trust that a slight diarrhoea is always far better than being blocked dead solid firm - because very little will save your life !!!- Letting mindful help difficult output. Particular points of life are easier for our effort in how we think about something. One can simply sit there with no activity, or imagine how toiletry would be if you had some form of pre-existing muscular prolapse internaly above the back passage, one would surely find much more ease if you bring this with you into this context, to feel out it's easier to go if you can uncover an easy less painful path by simply slowely lifting all those active walls up, out and away to let your output through. This is the basis, just as there are exercises to strengthen, so too they can help in relaxing and releasing in one, thus emptying all without large discomfort. Only the now empty walls relaxing back to normal form is felt, and dissipates. Rest for a moment, slowely go on with normal daily life. ( I came by way of this via injury damage, my end of coccyx is broken in two, permanent upward sharp pain and literally stops a part of my life, including some sitting and poorly nerve impulses elsewhere ).
- As a simple rule, during flare-up's, wait for ALL food to clear away down past your stomach before eating further, you should be able to begin hearing normal digestion noises leaving your stomach and begin again further down inside your small intestine, including over on your right (looking down at your abdo) a little sound to know travelled over to your ascending colon, towards output. Only then begin eating lightly again, while resting your body in an unrestricted physical position, not straining your abdominal muscles and so on.
- Never leave any part of your life to an unknown chance outcome. Where apparent advice by others nearby are involved rely only on yourself being in control of your own mortal coil. Avoid harming your stomach with further medicines on a raw stomach lining after being physicaly sick. The more tablets and medicines on a now super-sensitive area will end up with you spinning out of control in pain, cut back on unnecassary med's and begin sipping cool (but not chilled) water. Every single item you swallow can added to the overall huge discomfort, and ultimately damage, perhaps even permanently. Unless there's a specific reason by a doctor present that has been looking after you over a day and night and you need something, it's your own body so be responsible. At the end of the day drugs are helpful but they are also chemicals that can further irritate your lining further after throwing up multiple times. Personaly, every staff member should most likely learn to be aware of the severity on stomach's in this manner. The only exception to this is where the doctor is able to sometimes bypass further aggravating your stomach with some types of medicines being able to be delivered via your arm or injection into fatty tissue instead which can help with a better recovery.
- Ensure enough time has passed between meals, often we're too busy in life to notice when we just ate a snack and are now going off to have another with friends. All foods have different lengths of breakdown time inside the stomach and small intestine. This is an area where we can keep a mind map of which foods are slower for us personaly with our crohns so that we know what to expect if we eat further too soon. Which things are you sure that are still moving through you and still breaking down into soluble or wet material still? A cup of liquied something is better than eating another moist or dry solid so soon after. No one, not even staff tell us this. It's about being fully aware daily.
- A number of things are either lost in time or can be still missing from everyday care these years. Always take your medicines, if this is the correct time, before taking a spoon of stomach calmative, so they can begin helping under the protective layer that floats above your food. Tablets and capsules are very lite in their physical weight and can easily float about. They will take longer to begin if kept at the top after swallowing. Then continue your day hopefully in peace. Build yourself a basic list of things like this for future.
- As you slip into this new rhythm of doing all these things, just spare a moment of thought away and remember what the feeling you had throughout from the beginning niggley feeling to the stronger sure sign that your abdomen became in trouble, keep a hold of that and remember it always. Going back to that moment helps you focus on any future event again as you become older, the years can be thankfully long but it pays to remember, to catch it in time. Don't just leave it like so many other things, oh it's just a little pain, when in fact it could be time to travel to hospital.
- Truth is the other part of you, your psychology can take a beating with all of this going on all the way from the beginning including further back if it was already present in a family member. Just take each day as it comes along by doing all the good things for yourself, forget the outside world - there is only one you, one life. Everything else really can wait it's turn. Give your spirit for life other interests to ponder along with a few light chores each day if you have other body injuries such as existing chronic pain. Taking long slow walks amongst nature is another good way to escape for a short time. Peace of mind that your's is not going to get worse is the target we follow with crohn's.
- By and large things happen, whether we became a little bored with our same foods and ate something harder, or that big flare-up came directly from crohn's, the biggest moments are about keeping as cool a mind as possible even when you're shaking with heavy duty pain, including any pre-existing chronic pain elsewhere which gets reactivated at these times, it's about deciding whether to take the largest available relief for you at home, learning along the way from your specialist that a few other medicines will help smooth that whole experience inside your stomach over the hours first, before s/i, all helps to give you certainty you'll get through this. Push through, there will still definately be a little pain and very yukky feelings but keep warm and push through with knowing normality awaits a few days along from right now, that all you have to do it wait it out. Do everything right and wait. Just let yourself stare at the ceiling then doze off to sleep. Identify with the moving along burbling sounds inside your abdo' from left across to right and back across and down to output. With medication and fluids and lying on your correct side without food for twelve hour self reviews will show how much longer you will need for it to dissipate. ALL of your faecal loading needs to leave you into the toilet before you should think eating even the litest of solid foods. By all means keep up hot nourishing drinks and later cool drinks, all the while slowely have a warm shower so as not to put any weight or stress on your abdomen, keep those teeth brushed outside of normal times too, comb your hair change underclothes carefully, you are still maintaining self care, just slowely. Rest on your warm bed electric blanket for body comfort, even say a little prayer if it helps you. With as little as a few or three whole days your body should clear of the majority of symptoms, you can always let your nurse doctor or specialist know over the phone how your medical event is coming along and how you expect to feel next. Space each of those med's out appropriately while mindful of their strengths and benefits. As the days very slowely go by resting warmly on the bed make a few notes of how it began and what you believe the causes were. If you're already setup for regular blood tests have someone drive you briefly there and back again, these results will go through and tell your doctor your various levels and they can make any decisions for you while back home. There will be a series of these same life lessons over time until you should eventualy understand and live by the combinations of all that can ever go wrong, and then live a very lite life to avoid serious problems. Afterwards, simply because it's been multiple days doesn't mean you can jump up and go do all the usuall things like before, your body has just been through hell, you need to be eating soft crushed weetbix milky sugar diet with cups of tea for the next two days. After another whole week you can make a slight change again, over the weeks building to a normal diet. Remember, via crohn's your intestine has voluntarily expanded out with the nerves under duress, head back to life with care. And next time choose a wetter food to break from your diet boredom !
- Remember : Every toilet sitting is a further peristalsis event that will help further bolus move along. Keep hope and live.
- Just one of the ways a flare-up can start: The thing about IBD Crohn's is that it can present in two different ways, sometimes loose output (and even showing blood) or harder with constipation (little or no output). For the latter, as you are awakening, burping first thing in the morning can mean there is some form of blockage further along past your duodenum, the upper mid-region and the remaining upper level can contain your latest food trying to break down within the available upper space. It's literally not able to get past the blockage so its trying to digest without the help of the full small intestine, and gasses can come back up rather than continue on down and out. You will definately need to stop eating right now and drink only very small amounts of fluid along with a couple of laxatives to break up the blockage (or help ease your dry lining) from both above and below the problem area. This means it's also the correct time to place a mild suppository to 'unglue' internaly. Also stop doing physical effort which tends to dry out your only partly lubricated s/i walls, relax your body to allow any retained moisture to help in this process. Drink the occassional sweet cup of tea for your crohn's and pain medicines. All eating in life should remind you of the bloating pain of these times, this is an auto immune system disease, identify with your illness, reflecting on lite eating to get by daily, not large singular meals. Don't return to eating normaly and activity until you've begun hearing and feeling movement along your right side abdomen and seeing normal output all over again otherwise it may be a trip to the ED. Even then eat litely so your intestines have a chance to clear without strain, that unnatural s/i wall inflammation presented as bloating must reduce first. The walls of your s/i have been billowed out beyond their regular tubular shape and need to slowely relax back again, your nerves will then indicate over time less symptoms and thus pain signals, you will feel less of a mass buildup inside too. Respect your body !
- Warning : Read your symptoms carefully, if you are any part way through the above but are still not going to the toilet and there is no solid output you need to phone your doctor (during the day) to confirm things, or (night time) an ambulance to your usuall hospital Emergency Department to be seen urgently. Don't think it'll just come along soon with staying at home, make that call and tell them what you know, time starts to become your biggest challenge.
- Here's another type of scenario that can play through: If your'e out and about and you can tell a flare-up is just beginning just calmly but quickly start making your way home via normal bus car whatever, if you've already started shivering with pain signals just try to breathe in a shallow manner, if it's most likely an upper stricture that's usually known to cause you these serious issues then breathe with your lower abdomen so to speak, in other words don't puff your chest in and out causing ever more pain, just shallow lower breaths. Excitement is your worst enemy right this moment. When you get in the door take your normal pain relief and anti-nausea tablet, then a dessert spoon of liquid antacid which has a range of helpful properties, and just rinse your mouth out only so as to not keep experiencing the horrible taste. Now get into a slightly warmer shower than normal, still keeping your breathing shallow, as you go through this allow yourself to continue burping out any built up gas, the more the better. Now your'e in the shower get that warmer water to rest upon just above your mid-spine. You may already feel a generalised area of discomfort there, this is likely to be where your abdominal nerves branch out internaly, holding your shower rail for support move slightly to allow the warm water up and down your spinal column, this will help give peace to your nerves firing and recieving pain signals, remember to remain standing straight but relaxed, and know this is only part of your recovery. Remaining upright also helps ensure anything disagreeable in your stomach passes sooner into your duodenum and begin its way through or further along your small intestine, its also at this time that any lower signals to go to the toilet may appear, tune into your body and take every opportunity as it allows you to help yourself with the next part, consider everything in realtime to begin feeling better. After a good thirty minutes your spine and signals will have calmed down, the skin over your abdomen will have soaked up the water and also helped relax your actual stomach within, remain with your shallow breathing as you carefully move out of the shower to dry without crunching up your abdo muscles again. Relax the muscles around your stomach by remaining mindful but not stressed, easier said than done, i know, calmness. At this point you could think about one or two spoons of a very plain good quality vanilla ice cream only, just to further coat your stomach against food acids and get rid of any horrible after tastes, otherwise a cool but not cold glass of water (tap temperature) is the only thing you should try drinking. Avoid lying down on the bed just yet, even if your'e tired, just a relaxed angled soft chair. Take the correct medicines as prescribed by your specialist doctor for any or each particular stage. You will get past this by being aware and balanced in your responses to what is happening. Further along, realise this is sometimes our normal crohn's life, it's better to at least try living a reasonable life while being aware of what sets off a flare. If you have any additional chronic health issues such as poor vertebra in your neck then place your neck brace back on as you sit for support in case you begin sleeping from all of this, likewise keep up with any usuall topical creams for your scalp psoriasis for example, heart patches and so on. Upkeep all of yourself after this main crohn's episode, the more you can do for yourself the better you will feel overall. Stay as relaxed internaly as much as possible. As it draws towards late evening begin taking any normal night medicines with a cup of tea, and remember that you really will feel better soon.
- Going through suffering is all about the little things you can do for yourself. First thing in the morning brush your teeth to remove bacteria and drink at least two thirds of that cool glass of water before eating anything, go get the paper in to let it wash through your upper tract and stomach. Sleeping through the day to gain back lost night, wear a sleep eye mask (cotton) and foam ear buds so you can match the quiet of night time and rest easier. Have breakfast in a different place around the house to break up the same view each day. Keep on track with your health regimen but find a couple of simple chores for yourself each day. Let your bed air out from overnight.
- Beware the dry season of summer which can seriously dry the walls of your s/i much more than normal folks, particularly as drinking more fluids only goes part of the way seeing as your fine lining actually falls away. Dry or course foods don't help and this is why wetter foods like banana's and chilled sachet orange juice can help produce enough mucous for other foods to move through, closer to normal movement. Hydrate the surface of your s/i walls often through the heat.
- After your massive flare-up : Making back food into your s/i requires a slower approach than to just normal eating again. A plain chilled cup of yoghurt with chunky fruit (no small fruit seeds) is a good way to lubricate and gently clean your sometimes non existent walls. Perhaps a piece of soft cake - even for lunchtime instead of the usuall solid crusts-on double bread yummy heavy filling sandwhich that's only suited to a working level persons healthy intestines! The sounds you can hear may literally be similar to hearing the water go down the sink, don't let yourself worry about the normal sounds for a normal type event, your food is slowely taking it's place within as your common food loading. Trick is to ensure that daily intake loading remains a steady moisture filled foods, nothing too hard or dry, and always a cup of tea on the side. Simply space these mini wet meals out over the day. I'm a mainly ex-labourer turned office worker active person before my spine got in the way, for me that means i kept with a full on solid three meal a day embedded habit kind of guy, i have paid dearly multiple times for that headstrong ideal with serious pain and ED, learn from this and keep your foods really lite. Doesn't matter how it sounds, jelly ice-cream chopped banana as a main meal when struck down helps you survive. Think up your own easy intestine ideas. Know the differences, like custard is nice but it can be a bit bitey on the tummy and further along, there's just so many food combinations, and trying them all is a Crohn's IBD entire lifetime, it never finishes until we've written up our very own personal recipe books for the different ages of our lives we go through. Actively think about your foods than feel the discomfort moving around you lying still at night. Easy input equals > easy throughput equals > easy output, every single day of your crohn's life, folks.
- Most folks can have one or more further medical niusances in their life, whether it's excema psoriases, foot issues from previous years of difficult workplaces, fingerbones wrists and elbows and not just the main spine can all interfere in your quality of life, not forgetting headaches from things like eyestrain and existing serious neck issues, all of these things need to be attended to at the same time as your crohn's disease, upkeep all of your health care by finding what helps you the most, from personal experience, not just someone elses pointers.
- When you're unwell never just sit any old how in your favourite seat. Keep your spine propped up straight, sitting poorly can bend your upper mid-spine backwards and cave your chest in. It comes down to the designed curve of the seat too, place a thin sunchair padding into the curve to gently bring your chest and stomach forwards per normal posture. Particularly important after a long day when it's to easy to just slump inwards and fall asleep only to find you're not able to breathe normaly or even get up and walk. Remain aware of your body posture.
- Post Operation Afterlife: Naturals kills bugs too, crohn's patients glands can be a problem for some sufferers. Whenever you get a bug in the throat finely slice up half a garlic segment right before dinner, pop a slice in and chew it around the mouth and take a sip of red wine which is a good carrier, again until it's finished. Your dinner should be a mild curry and rice and maybe a peeled boiled potato, do this each night for three nights. In between times take your normal script of antibiotics, morning's best but not before bed as they can be too strong on the stomach. Drink simple chilled orange drinks or squeeze your own real oranges daily, get outside into the fresh air and go for a walk so it clears your lungs of older breath, get the warm healing sun on your back, then rest and suck on antiseptic anti-inflamatory losenges for your throat and passages through the day and let yourself sweat as you sleep through the night by purposely wearing warm clothes to bed, a strong gargle and blow that nose every chance you get and keep washing those larger hankies out. Stop the losenges as larger phlem begins, your system is taking over. Don't eat take away foods for the duration. Before you know it your throat and head and body will have gone from sharp hot pain to sneezing sweating coughing onto phlegm and gone. Get back to that mild curry every second night. Kills a whole lot of bugs through your system in one go. Should be mostly gone in one week, but may drag lesser for the second week, it's why bringing the good things straight away helps. A few decongestant nasal sprayings won't go amiss right about now either. Wait a few nights of sweating, then have a hot shower that next morning for surface germs and relax the muscles, colds love stress. Trail off back to normal dinners. Know all of life for yourself good folks.
- Enzymes: Understanding the fuller picture of your Crohn's. Active human bodies are standalone productive factories and help our overall survival, including our very real level of daily comfort or not, for example inside the stomach, or further down into the small intestine. If you are not able to be making let alone timely processing the enzymes you would otherwise need for a healthy body because of perhaps an additional mechanical disability to move about and help set your internal bio-physiology in motion then you need to drink and eat calm foods for your gut to not feel seriously uncomfortable, if not outright realtime sick. We are our own managers, foods add and negate each other all the time, making life happy or unhappy upon balance of all given things. There's nothing wrong with going for the blander foods so long as there's actually a good mixture of them. There's nothing worse than being ready for some life chore or enjoyment only to be let down by our own choice of pre-activity foods. ALL of our choices count in life: Less bitey, more fun. Small calm meals over your morning, and day towards night. (Dictionary: Any of several complex proteins that are produced by cells and act as catalysts in specific biochemical reactions). Mindful was always intended as a flowing sense, it's the better replacement of how we all just acceptably think when we first come into the world, alongside other people, and not the rather mis-steps we used to take, better appreciation of our every living moment. Lifewise: additionaly, you may find it less stomach upsetting if you rest on your left side immediately after a meal where you are already daily tired, exhausted or in other discomfort. Basicaly it won't be folded over or under pressure as much as on the right. Keep your body remaining at peace always. Help our food eating selves for the better.
- Crohn's is an unwelcome continuation, an intrusive lifestyle that never goes away, so once you know - begin to train your mind and soul into understanding where things are, and how things should be for your own self care. Arrive at understanding the type of regular type of pain crohns comes along each day for you, and then do things to ease the severity. This is a lifetime experience that takes longer than all those rushing around you know. It's your new world. Practice Mindful Self care.- Rare events: If you are a Crohn's IBD sufferer then go buy yourself something similar to a Propert Strainer, a wire mesh or alluminium sinkhole cover for your shower tray to catch hair or anything else. Choosing your food carefully also means ensuring you combine foods correctly. For example hot sauces don't work well with thick solid foods (similarly thick peanut butter in bread but chilli sauce added can form small tight solids during later stage digestion), or a dry curry with sudden dashes of a black sauce, overdoing yoghurt after eating fish or meat is another, it's because bitey sauces always remove all the softening compounds in stodgey foods, they become super rough and dry, and when that food tries making its way through the s/i small pellets of bollus can be left over but never form into a normal total shape output, add another issue such as pain relief for lower spine or pelvis and the anal area simply won't have the muscular ability to assist in outputing smallest items. These cannot simply remain there until your next main toiletry passing. An appropriate way to help rid these is in a warm shower. Place the strainer over the outlet, and without using soap carefully adjust the temperature and warm around your opening, semi squat and let the difficult particles fall away or with very minor assistance into the catchment area. Place them onto toilet paper, enclosed and transfer them to the toilet after the shower. Wash all areas thoroughly with soap and dry. Bathroom cleaning spray elsewhere. Return to a normal diet away from sauces that breakdown foods, you need their own normal properties to help form and go through without troubles. One last thing, place a mild suppository if you feel there is more within. And always tell your doctor if you experience this often. This is your own body so help it along, it's not difficult if you care for yourself.
- As busy days at work goes it can take us away from immediate health needs. Important tasks at hand that are intensive and keep us at the one spot can blind our need to keep a part of our daily 'maintenance self' tuned in to know and activate ourselves when we need to go. It's just too easy to keep on working when there's actually build up occuring. Toiletry releases that internal pressure and literally allows us clear minds again without something bugging our body in the background. Visit the little room ! ! !
- Changing your life means when you've forever been putting up with your multi-damaged spine and just arrived home from a crohn's procedure or specialist consultation in hospital only to find you've got to put up with daily things twice as difficult as usuall. Begin thinking how you can make simple things like always fighting with opening those always catching dresser drawers better, or perhaps not using them at all. Years ago i found it easier to get some workshop shelving for the bedroom to make storing my folded clothing for walking upto while folding or dressing, the drawers ended up storing unused clothing that had since become too restrictive for a part of my pelvis, and at the same time finding new longs that help. It's all about not straining the parts of your body over and over as you become older with chronic pain that becomes compounded until that serious instant fatigue sets in faster each time you go to do something normaly easy years before. Another example is pot sizes i used to keep on the lower kitchen shelf, were better brought upto the top shelf and all to one end, with the smaller and their lids to the other end closest to the cooker, and the dicing board higher too. Made it all lighter work to cope with the pain. Yet others include sorting down to a fewer condiments and brought down off higher shelves above the bench to the lower arm reach. It's about making normal life not just comfortable but survivable during the time that keeps passing through your life. You need to be able to say to yourself by the end of time that you've at least tried to take the pressure off poor discs or vertebrae in your neck for example by changing all the many unrealised normal methods of reaching our with your hands for all the ordinary needs of a day. Have a look around the immediate vicinity as you go to do normal things, is there something about it with a slight change that would help your body or parts of you?
- No one else: When we're unwell we make ourselves stronger by pushing through with the things we need to ! ! !
That could mean moving our body about doing just a few of the house chores outside of some scheduled day, in other words having our torso move gently about, but enough to keep our small intestine happy with managing the food within. This also helps avoid feeling your foods or bolus moving every inch slowely through your tubes at night while you try to get some much needed deeper rest without discomfort.
- Keep yourself alive: Refilling your stomach and small intestines with new food is never the most comfortable experience, particularly if you're completely empty. Some folks who feel pangs and the desire to eat may select a food that gives a sharp feeling, others weaker with the resulting runs. Foods that helped my operation recovery when back home like drinking lactose free, lightly warmed, Soy Milk with an almond flavour. Solids were a serious issue and it simply didn't glue me up inside while feeding me at the same time. Soft poached eggs are quite an easy food too.
- Looking after your skin: Wear a t-shirt near the stove when cooking in the hot summer months, and use a scar tissue oil such as Bio Oil which cares for your long scar like a bandaid while moisturising to allow healing below. It can also be used long after to help with other scars over your body such as from sebaceous cyst removal that after some years becomes dry sometimes causing an aggressive sharp pain forever after, it just needs softening daily. These are one of the truly fiddly ' time out of your day ' hassles that can add up to stress. It's a pain, so do it for yourself. Similar things exist for those with psoriasis scalp that require their own treatment to soothe, including excema for which i find Neutrogena hand cream (fragrance free, norwegian formula, 56gm) a real help, in fact just litely, the only thing that cools it. Avoid remedies that sting, you need to keep giving yourself this care through life!
- A bunch of other things that may help you know your overall picture. 1) Some do better with only dry foods because their bile may already be naturaly plentiful or after a flare-up, wet food can hurt because of all that stomach acid further along. Others may have an in-between and happier experience of food and digestion along the walls. 2) Unable to eat doesn't always mean a flare up but rather an overall discomfort of your gastrointestinal tract. Always have something different to cook in case you can't eat what you've just prepared for dinner tonight. 3) Most stricture flare-up's will be lie down on your bed events, but some are just that lite enough to allow slow walk-withs through a quiet day. 4) Lost rest over weeks or months. Be prepared for some long catchup's of rest for being forever unwell. Prepare yourself to know real tiredness, you'll most likely only know tiredness from doing many things in a day, but after being so unwell for quite a while a secondary worn out tiredness eventually catches up with most people. That's when a few afternoon sleeps can help restore your previously normal day night rhythm. 5) Make a hard copy of all your medicines, along with quantity size repeat and basic use, type and print in a compact form and keep in a plastic sleeve as a reminder until a medicine becomes included or removed, handy when you need to remember what you should be taking for one of your symptoms. 6) Keep an active calender of when your next blood test is required, and keep a list or copies of the results, the dr does know best but you can always help by doing a few small things for your body. 7) The whole idea of being careful while going through a flareup is to wait for the s/i walls to greatly reduce back down in size and for any food blockage to break down into smaller parts, and move along to the colon for its own processing, and then along to output. Only then can you even begin feeling comfortable in eating anything even small and non-aggravating foods within. Keeping Intake-to-Output our personal measured balance every day of our lives. 8) If these are still early weeks or months after your operation then be prepared for other medical news to arrive into your life, those things you find out for yourself, or from your specialist. Take in the full context as there is a range of criss-crossing information that will be important to realise about each symptom. We all begin life playing and working while never knowing about our actual selves. And, with any disease, our body demands respect from us.
- With crohn's there are always small internal changes going on all of the time, if you are an older experienced person with a group of medicines available that you don't regularly take then you may have come to learn how best to use each one properly, often based on original experience after your original surgery. A particular added symptom causing real difficulty requires specific help. Continue monitoring for that particular symptom within your crohn's so you know when to stop that medicine, letting things slip by your attention can lead to other issues. Never allow compounding problems to begin. Keep the view of letting your body be in its own peace.
- The real tongue twister. Whether it's crohn's or another poorly ailment we all need to take a range of medications each day and often that means grouping them together with our morning hot drink. Slight individual differences of each side of the jaw can mean a thinner or wider space for items like food or tablets to get stuck between, before possibly dropping away into the back of the throat. Only problem is one tablet could find itself down the inside at the back, easily done if we're using our tongue to try steering them in the right direction, and one becomes lodged deep down the side where there's no light. Here's a technique to help release it instead of letting it harm the soft tissue: So let's say it's gone down 'your left side' of inner mouth, go and stand in front of your bathroom mirror with the light on, or a small bright torch in your left hand. Avoid just rushing, in your right hand, holding your toothbrush with bristles pointed downwards, looking into the mirror slide it comfortably back between your furthest lower back tooth and the largest part of your base tongue muscle, with your wrist turn the bristles inwards on an axis towards the middle of your mouth, relax your whole tongue, and gently have the head of the toothbrush lift your tongue away from your teeth, there will now be a space where you will see your slowely melting tablet, slowely slide the bristles over the top of the white mess and drag it all forward out your mouth, relaxing your tongue as you do. Get some fresh water and do a proper head-up gargle to clear the rest of it away, done. Next time keep your tongue down when medicating.
- Your circle of life, unless going through a crohn's flare up, is to eat food make energy have output live a happy life. Even within post flareup difficult moments we all need to be a little bit brave and test ourselves with eating foods again on raw feeling insides, it's literally the only way forwards to help fill our intestines with energy and keep living, it's between that rock and a hard place which may bring us more pain but for a better end goal of getting back to normality for our particular lives. These are our crohn's challenges. Be well folks.
- Unfortunately there are other symptoms that can affect crohn's sufferers; these are increased weight through eating and feeling more tired through fatigue, both due to the main illness. The earlier pointers with smaller meals may be able to help control the number of flare-ups per year, but fatigue cannot be dealt with quite so easily. Watching what you are able to eat in the fresher foods may only just offer you some help. Folks like myself find it difficult in relation to our chronic spine pain in getting our bones moving to even get along to the toilet when our s/i is calling and we often wonder how difficult it may become as the years become longest. All of this effort can be extremely testing for us, simply try to achieve your daily house chores as best you can folks. There are no easy answers to any of this.
- Ultimate pain. There's no such thing as settling into your disease. There will always be times that you can't quite get there today or some day. Sometimes we literally pause frozen in pain, maybe on the edge of our favourite chair, it could be right next to everything we need, or it could be a short walk across the room meaning you need to get up, you know inside that the longer you leave yourself in pain the stress of it will make it seem more than it really might be, it's at this very point you need to find that extra little bit of energy to open the draw or cupboard and reach out and pick up your tablets that will help you back on the way to level comfort again. Take your pain relief, rest and feel better and move along with your day as best as possible. Avoid waiting for it to get so bad for you to remain sitting there getting physicaly cold and crying in misery. Get yourself a hot drink too !
- Varied daily toilet issues. A mind and abdomen in touch gives an all round better daily flow. When we go to work, depending on the type of job - we may be forced to keep our body taught throughout the day, in this mode having a normal output can be difficult. With a relaxed torso and abdomen we can read whether our intestines are ready more easily. One of the ways to remain healthy through life is to keep a relaxed abdomen, literally meaning we can all do better for ourselves with loosening our muscular grip around the middle and thereby internaly too. Learning to read our body has always been one of the best things we can do for ourselves. Be a whole person from top to bottom no matter your position in life, from doctor to digger they are all good things. Relax and go, easier.
( And to think some of the right wing politicians wanted to limit our toilet allowances in the workplace - to nearly zero !!! )
- Some patient problems aren't made apparent until someone talks about it. Never be overly concerned about medical staff questioning you about specific tablet taking, only yourself owns that bigger picture as you are the one who must decide daily and forever the combination of many medications you need to be taking and in what order. So long as you are taking all of your respectful medicines, answer as best you can in that sometimes very difficult moment. No one should expect you to have all the perfect answers while you are busy presenting with pain. Reduce the stress.
- Reminder : Some medicines do far better on an active stomach, during the day when you are up and awake and eating your usuall meals and doing the usuall physical activities that help digestion, rather than when asleep where your stomach and body is in a resting state, and any medicine will simply remain sitting still in the stomach rather than being actively absorbed. This information is a reminder to take the correct medicine at the correct times, not to leave it too late in the day so as to avoid feeling unwell from such unwanted affects. Other types of medicines can be taken over the evening or night time because they are ingested easier during those hours. Always ask your doctor or pharmacist if you are not sure, don't end up feeling extremely sick from taking something at the unintended opposite end of the day or the night. Always check first !!!
- Never go through life the hard way : From the beginning of your Crohns Journey make sure you collect all the small pieces of paperwork like reports and copies of scripts to remind self what you needed to take and how your medicines list have come to settle on a distinct regime to live by now. Keep all of this in a flatbox or folder along with your CAT and MRI imaging discs and oldtime x-rays. These include printouts of blood tests and their results, listing of medicines and their amounts and times, and brief notes of the next direction your life may be taking from your Specialist conversations, not least your body weight as time goes by, and self appraisal notes too. All good knowledges to guide your personal health life. And never make or give copies away in some spirit of the moment decision. Paper copies only, don't hold them on your computer !!! Keep yourself alive longer, knowledge reminders into your future !!!
- Keeping your intestines intact : Always look towards ensuring yourself a life without a pouch attached to your s/i abdomen. While in the Crohn's stage set yourself to eating a sensible variety of foods that will happily travel through you giving both adequate energy and good output at the other end. Never do as i failed to realise early on by continuing eating my standard fare. Namely mix a few or three foods that you know together, something soft plus another moist and one more of something tasty to make up your dinner meal, knowing it will go down okay, stay down okay, not rumble around while relaxing later on. Other times just two bland things and sturdy drink. Don't rely on your shopping list every single time, pick with your mind, knowledge, and eyes when buying your weekly groceries. Variety in life's foods helps overcome some other days minor blockage, like sometime i'll pick up a small crushed pineaple tin because i know it's a cutter for me, both fibre and juice have their place, but once dealt with i won't keep eating the rest of it, otherwise it's just runs trouble, when it's done it's job i let anyone around eat the rest, not throw it away.
- Links to help you survive more comfortably :
What's it like to experience an IBD flare?
Beyond Tired: What It's Like to Live with Fatigue and IBD
Helpful & Hated Foods- Beyond care. There are times when as an ongoing relapse patient you may come across knowledge of a medicine that may help you with less undesireable effects and is kinder, or a new medicine that helps dissipate your difficult daily amount of pain you are subjected to, naturally requires that you approach your doctor and discuss how this might take in more aleviating of discomfort beyond one of your existing or collective medicines. Ask for the opportunity to at least try a short course and not just decide to suddenly push to change over completely until you know for sure. It could be that you are mistaken once you have felt it for yourself and indeed wish to remain on what you have before. A helpful doctor will chat and follow a small tester depending on the product, and should be able to help you long term if it truly is known to be helping you. Additionaly, take each medicine for their particular purpose, unless told they can also help with a second issue you already have. Patience always.
- People who've never been introduced to or thought about how they can help someone with ultimate physical or mental care can also lack that ability on behalf of themself too, simply imagine you perhaps cannot actively move your arm in order to have your hand which still works to pick something up to use on another poorer health area of your body. Trying this over your entire normal varied day will help give you a new appreciation on using the other limb. This also helps set your knowledge for any future time in your own life.
- If you will be attending a blood test that requires you to fast, then keep yourself away from the wonderfully inviting flavours of the breakfast kitchen and ask flatmates or family to not tease you with delicious foods until you arrive back home. And likewise please do remember to not tease others in the same situation, later on.- When you head off to bed for much deserved sleep does your body still feel lite and ready laying upon the bed surface or calm and relaxed, it may be you've still things to do but need to rest, take notice of your sleepy mind and eyes first. Life is about exactly that, letting life pan itself out over the days to allow time for sensible energy versus effort. Don't let the mistakes begin or snowball because you now feel self pressured, or unnecassarily for others perhaps too.
- Be good to me, speaks to self. Never lose faith in your intestines: That means eating the right things through the day that gives you the faith that you're doing the best things for them. Sweet and soft foods to start their day, Savoury foods at midday and only if you're physicaly on the move helping pump that food through you, otherwise less harsh foods only, dinner time should be a smaller meal of various combined mildly hot flavours with bland and fruit to cool afters. If you're kind to them they'll be kind to you with how they bring about how you feel either now, after a meal, or later on when certain food elements hit just the wrong spot while moving along your pipes. As mentioned previously you are your very own manager for your organs, bones and brains. What kind of day or evening or sleep do you want - Do this one job just so over your days and lifetime and you will have succeeded best as possible among other humans. Do the wrong things for them and you'll only have yourself to blame and that mental and/or physical misery to put up with !!!
- Introductions : All and everyone spoke terms and tablets around me after my own operation, i know others who've had that same experience too. The distance between walking in for the first time, the naturaly applied trained staff speak, going fast/slowely for the new assumed not hearing realtime, and the rapid or not progress when suffering, can be far and wide. Not forgetting just now waking up from your general anaesthetic with a whispering voice in your ear. This is where the best of open minds and clear communication could come into their own, better for everyone there. Please respect the new while keeping them healthy and pain free, explain things. Thank you for your help.
- Tip : Other things happen when you have a disease in life. A little pointer for you if you've just had a minor surgery somewhere accessible on your body but you desperately need a shower to clean up. You know those red plastic lids you can get for your pets foodcan to keep it for a few days in the fridge once opened, well simply hold that over your surgery dressing while having a quick wash under the water with the other hand. Ensure it encapsulates the whole area, or change to a larger lid type item. Hold it over firmly to not let water underneath, half a shower still feels alot better than nothing at all. Dry the hair or around the area when you hop out to stop any water running down onto it. Other type items can include a smaller shampoo lid, washed and dried, held in place. Any shape that is flat to the skin surface. Additionaly : always try to check they've given you the most suitable dressing to last that fortyeight hours. You need to be sleeping well at night only being mindful of not leaning on it, not worrying about whether the bandage comes away because it's too flimsy to stay on. There's nothing worse than realising bacteria may have formed while it was off, including blood spread all over your pillow and sheets. Ask that you can change your own dressing too, these are really important things for the goal of healing your new wound properly.
- Overall : All parts of medical staff need to reflect with patients that they themselves have the final acknowledgement of health offerings upon their body. Flowing with medicines of the day is all fine but there needs to be more inclusion as to causes and affects, not simply describe any effective outcome. There are care policies already but the daily speak is where the activity determines whether any of us feel in control, not just comfortable. Please lend a hand person to person their ability to think and speak about and for ourselves, including for those with damage issues, thank you.
- Keepers : Ointment, Cream, Rub tube Caps can sometimes break away from the aluminium or sharp plastic thread and split open, thus causing waste of your sometimes expensive topical medicines. By keeping and washing your old caps you have a means to replacing a faulty one. The same can be done with jar lids also, just ensure you've removed any inner material from the edges and sterilised each one properly before next use. Keep them in a glass jar.
- Remember : Sadly it's a far more specific world now - You CAN have a copy of anything you sign !!! Get the copy !!!
You may also be freely entitled to a range of other notes under your name regarding your personal health files. Ensure you read each one of these with a balanced view in relation to how a doctor would for a better outcome for your body.- Part of these above notes should include any feedback helpful for both you and medicine, and others going through it.
- If there are unusual symptoms showing up then perhaps share those specifics online so other sufferers know too. Poor health tends to show up the most honest people for what they're going though in their harder lifestyle.- This page is as much for those who are only just encountering their crohns at their particular time in life as any of us who've known for a while, so - if you normaly go off to bed early then have your dinner earlier like myself way back at about four pm, so our digestion can have the same relative amount of time to begin digesting before laying the intestines horizontaly flat.
- Your place is to understand much more than the doctors and nurses and staff around you, while remaining open to their specific bodily functions advice. All the many other small but important things that help your body to succeed or fall behind is not what they teach them at medschool. It takes life to live through it, they cannot possibly know how one illness interacts daily with another illness, or every conceivable pain or symptom, only for what they've been taught or may have picked up along through the years. People of all types pick up dribs and drabs of information around them but fail to see it's only for that one unique situation but forever keep trying foolishly applying it to all such others. Never listen to ultimately indefensible idealistic persons. Looking after self means far and away more of all things !!!
- Always remain both aware and focused on what your pain reliefs, singularly or combined are actually offering you during your daily sections of time, for either your single or multi disease situation, before wearing off and starting to place you back into the same step once again. Whether they be abdominal and or skeletal, avoid falling for the 'i can do anything this morning because i've taken all my tablets properly' falsehood. Your medicines don't buy your pain, only you a little time. Remember always 'the more or wrong things' right now WILL exacerbate your pain later on. It's actually a positive reminder to stay on top because you're the only one who can. Be satisfied, do right by self. (And certainly outside of your private life, no one should demand any particular overbearing percentage of your employment energy while putting up with living with one or more chronic illnesses. There is simply no desire by many these years, to voluntarily think about how an employee who is unwell, can cope or not with all given things present in their total life.)
- And this is exactly where the following belongs in the list. Work life and reality means occasionaly checking your own and country's health systems' point of view compared with a typical search for ' hypochondriac ' will show whether they still portray a particularly old apparent ideal, or have updated their own medical mindset nationwide, not just slipped it out of view while using new terminology that means the same, all the while ensuring you feel justly secure in your understanding of your crohns disease being real. It's important in your life going forwards into the future to not just feel comfortable about who you are, but that there is no question whatsoever of your body's state of health. It may not be immediately seen as something to consider but No-one may take your health status away without good reason. Learn to converse and defend as you would your work employment contract for the upkeep of your health always !!!
- Specifics: Never listen to silly things, even from a doctor. If the personality of your doctor is such that they freely entertain telling you that one medicine has the same ingredients as another medicine you are taking, and incredibly telling you to throw them away, forget you heard it. They are foolishly going off track with your health. The reason you went to see a Specialist is because they have more knowledge in our particular field of crohn's disease, than a doctor. Trust in what this person says to you over and above a Doctor at all times. Secondary to this, is the ingredients are by the wayside, and infact are not exactly the same in any case, is that we and you are told each medicine is for a specific symptom and to take that particular one for it, we literaly come away from a consultation with the correct knowledge, this is the value with which we remain alive with, not some other 'apparently' similar. Remain with what you have been told by the specialist. People with diseases of all kinds exist from the beginning of their experience, not half way along the years to be told some rubbish by another who wasn't there. This is OUR lives. These are medicines we still require for our body to function as close to normaly and without pain. Ask for your next prescription from that doctor, or if not possible from the specialist themself again, it's too important to abandon.
- Naturaly first wherever possible: Summertime can be a very drying time for crohn's folks, here's a little helper that should break down solids inside, something i've had success with. If you're making a chicken soup for others, typicaly a few meaty chicken bones, one diced onion, four fine diced carrots, fine scissored cellery sticks, small diced thin pumpkin, one very finely grated carrot and parsnip, with a pan of plain hot rice on the side, a touch of salt over each, put extra water in the soup pot and wait for it to simmer and finish. After serving others syphon off into a bowl or cup just some of the liquid, and immediatly top that water back up and put back on the heat to boiling for their seconds. Drink the half bowl of broth after your own very lite solids dinner, this will help break down much of the material you are already having problems with through your small intestine, without introducing (hopefully) any bloating and therefore pain. Things should be moving a bit freer next morning. Have a second juice drink while it's hot. It basically has a variety of goodnesses that break down matter. Give it a try when things are feeling impossible!
- The things during or after massive pain that bring you back to your weekly sanity. Like when you're in bad flare up days, and ensuring you start and finish one chore around the place, or even filling your bottles back up to ensure taking all your medicines more easily, simply by doing just a few per day, starting with the most needed, all helps to get through the hardest bits, you are helping yourself survive all of your ongoing life. So many claim to know how to care until it comes to us. Lay a spare hand as you move about the day over the area to give self comfort. Warmth helps heal and you make a kinder connection with your scar. Things get done for yourself, it's important, keep it going !!!
- Remember, we are often in our worst discomfort when alone with ourselves, it's when we're busy with our own standard life dealing with a body problem. One of those times can be when we're recovering from diarrhea, and the whole deal has flipped itself to overly firm, our bolus (food) has decided to solidify suddenly early before reaching the output due to wall dryness, when we now have a tight mass in our small intestine. It indicates we need to go to the toilet but nothing appears. We ultimately cause ourselves muscular pain from pushing, but can sometimes believe in our earliest crohns years that something more is wrong, but more often it really is just muscular. The trick here is either keep a steady abdominal rythm in the face of the pain and allow output to just appear by waiting patiently over the whole day, or take an unecassary chance of pushing and causing a break in the wall, that perforation we aim to avoid. Allow your inner abdo to drop down relaxed as you walk about, not all tensed up. However there's a third and often more helpful option, take yourself away to the top of your warmed blanket bed, along with some oil and very slowely and lightly massage over that abdominal area where you are feeling that knot in the works. With hands raised off, use only the ends of your main fingers to move above your intestinal loops, going in a combo down away and slow semi circle and gradualy back up and over gently, to hopefuly slightly move or unlodge (not agressively dislodge) the fecal matter within that might be small enough even if hard and dry from lack of wall moisture to move even just a little into the path of the next natural peristalsis muscular action, and moving itself along. After those few minutes just rest for an hour even falling asleep will help this natural action, learn to again trust and rely on your body rythms, and hopefuly when you awaken it will present itself in the toilet. Massage is also a means to an end for those suffering with pushing too hard to make it appear, ending in a miserable amount of steady severe pain, for you take your tube of emulgel to the warmth of bed and lay there lightly cover your specific abdo spot, a lite massage like above, focus yourself to the area and leave a good amount on the surface, cover back with your warm clothing. That gel can usually help by absorbing into the skin and abdo muscles, take a single standard otc pain relief if really needed, and remain laying there even sleeping for an hour to let it work in as above before getting up slowely with legs over the edge and walking away, leave your chores till tommorrow. In both these methods be mindful to leave that side of your body laying out flat and open with leg out long or bent at the knee to allow your intestine the full curve around so the fecal matter can flow and move on towards its next location, whether that be the large colon or finaly to bottom. Saying a little quiet hopeful word for your own body may help too. Output is your slow priority. Be well, drink your electrolyte sachets again, as you did to top up your fluids during the runs. My favourite is blackcurrent, simply tastes better.
- On the way to understanding our symptoms, we hear abdominal sounds: There are two types of noise, bubbling of air and/or fluid going into or coming out of a stricture area situation, one is where food has not gone through and down further and beginning its natural flow through the s/intestine, and as you become well again as the s/i wall inflamation reduces and toiletry begins properly again at the other end. And in-between the soft whining sounds as air changes places from one side of a stricture to another, hopefully further past the pain, and on the way to recovery.
- Finish the day with something soft on your stomach. IF you feel you can, something like a small yoghurt, small cookie, cup of tea. Far away from how we always did as we were growing through the decades and going off to bed with hard stomachs from dinner alone. Those stronger nutrients and enzymes have their place during the body's active and absorbing daytime hours only. Your resting time self needs much quieter everythings...
- In amongst your monthly medicine preparation chores consider giving yourself a break from emptying your sheafs of tablets and refilling all the time by finding a local pharmacy service that can bottle them for you. It may cost a small charge but it gives your whole forever ' ...keeping up to date ' timing and psyche a rest. Chronic illnesses are forever in your life and your fingertips will thanks you too!
- Know when you really are in pain, as opposed to those who may not think you are, never let their view carry you away from not caring for your real body symptoms. They know words can embedd in your psyche, take no notice and identify with your original pain and take your medication as already known and required for you to get through your days.
- Sitting still with your sickness during deep summer keeps you at the best stable temperature, but then someone comes home from moving about out in the hot sunshine, opens the window and unintentionaly lets in a massive volume of hot air into the house, you begin sweating, all they wanted was a cool breeze. And your comfort from tracking your pain quickly becomes impossible, and soon uncomfortable. Unfortunately air flow in summer doesn't work to our expectations. Use a cooler room until everyone aclimatises, then move about the house easier together as it may be cooler from being later in the day too. Little things that make a difference.
- Anytime toilet response: Whether morning, evening, or two in the morning, if you need to 'suddenly' go but require your intestines to push a little harder then beware you may set off a muscular spasm after your output has happened. Avoid going and sitting in a chair but instead lay down, it may continue for a few more minutes and may hurt more but not as much as seated doubled in half, at that moment your instestinal loops need to relax out flat horizontaly and position themself naturaly across their abdominal space. Keep personal contact with your abdomen with your warm hands gently on your tummy, this will focus on calm and slow the reflex going on. Learn from this for next time, be more patient and allow your own natural peristalsis decide the speed of output, and then with a little help only, which will help avoid a twisted colon, or worse such as rupture (perforated) crohns colon. Know your own abdo' muscles strength always. Remember too, a niggley feeling does'nt always mean right NOW !!! Wait a little to see . . .
- Flexibility. One of the best abilities you can own with Crohn's in your life is to be able to change direction quickly. Perhaps you are about to prepare dinner for everyone but something tells you, you won't be able to eat the same things tonight because you're likely to be feeling unwell. With a little foresight you can quickly switch to just something lite or milky cereal type food and thus be onto a better path for the rest of your evening ahead. And even if nothing poorly eventuates you'll still have had something to eat. Better to be safe than sorry means avoiding a possible trip to ED by self management of your symptoms as they appear out of the blue. Ensure you are covered for the medicines you require right there at home already. Be well crohn's folks, recognise rapid gastro' changes and balance the outcome.
- And here's something for every type of person: The language they speak back at school about the digestive system didn't get to everyone in the same way or infact any way at all. When really they needed to be telling all of us how to look after our intestines properly instead of assuming we could read between the lines back at that young age. Life is not always being taken away from you but rather waiting for you to catch up or see the particular lesson you need to see if you're to get further ahead with body awareness over your coming years and decades. It may sound harsh, but imagine the worst case scenario for someone presenting their poorly abdo' dr, if you think they may not have appreciated it properly from the beginning of their wider life knowledges moment, or still aren't aware properly. Perhaps because there's just too much happening at home or you went through a crash for you to have quietly contemplated all your natural workings. Simplicity is eating, then timely toiletry, makes your body happy. Feel life already within you.
...and if it is an everlasting injury along with your crohn's then ensure you never put your body through any odd torsion like bending down sideways or otherwise aggravating the other main injury at the same time as a crohns event !
- Remember this too, it sounds very simple, but never go off to bed to sleep thinking some new crohns symptom will just go away, it's still going to be there even if your'e not aware, you need to remain up until it has passed by, you need to take your medicines that you know will help right then. If it's a case of a raw stomach, then try some banana with ice- cream and milk, if that doesn't seem to do anything over the hour you need to try your stomach medicine such as omeprazole (script), or antacid liquid following that if still not okay. These are part of your known crohns home emergency items, otherwise consider your hospital emergency department, or if close to the morning by then, your doctor. As part of your overall plan thinking, consider if you have a stomach that is more accepting of foods that are more sweet than sour in type, if that's true then remain away from eating the particular type of savoury foods that sets off your crohns episode. Some food items can be very specific upon your stomach lining. It simply means a softer less harsh version of that food, or otherwise somewhere in between or only sweeter (but not burning sugary) foods, see how that goes and find out if that's where you need to be to settle into such a diet. Remain away from that type, only try it during the day. And if it's a case of a full stomach from overeating at dinner time hours ago then avoid laying down so it continues down through your intestines with perhaps the help of sips of milk or almond milk or similar softer drink. Eat whatever just slowely over the night so you don't feel sicker.
- Hold onto the information you gained from the earliest moment your health issue began, some self notes may not remain as fully relevant as some of the newer but you may just need it again at the turn of a problem further along your times in life where there is no other knowledge on offer, simply collect and reflect on what pointers you already carry to get through some poorly times. Same goes for other areas of life to get by, and our planet earth's future !!!
- Take your needed medications In The Same Moment so you don't wonder if you've taken them. Avoid turning to talk, telly, typing and become unsure. It also ensures you don't over-dose and become extremely unwell, or pass away!
- Some reading for you to understand your intestines : living-with-crohns-disease.pdf
- If you're in hospital ask if you can bring your own t-bags, sugar, milk and they supply the hot water for regular cuppers.
- An easy way to dry your cool Drink Straws, blow the postwash rinsing water out with a new mini balloon pump.
- Trick to that spoon of yucky ant-acid for your tummy is to rinse your mouth out without drinking any water.
- Every day is another step to normal life, awaken each morning with this in mind always...- Keep your new crohns life focus but don't let it get to you mentaly, just flow...
Remember words like wellbeing expect a huge amount of care...A fairly good start, this list will build over time...
Go to the toilet over the day, folks...
Be happy, you are alive . . ....laminate first
QUICK LESSON :
Normal and Crohns Flare-Up : A visual understanding . . .
Now that you have read most of the things to expect, keep in mind the following . . .
Folks ask me about what it is, thinking it may be like a constipation blockage, and they're partly correct . . .
It is the inverted shape of a broad bubble, on the inside of your intestine wall, where material becomes clogged up...
The inside wall lining becomes inflamed by way of our crohns autoimmune system over acting upon itself...
Left : Normal Daily Intestinal Flow...........................Right : Restrictive Painful Crohns Flare up...
There can be a fairly sudden onset, and the sufferer can feel extraordinary or severe abdominal pain.
To ' calm ' this in-body reactive activity you need to be referred to Specialist doctor for medicine.
There is no cure for crohns disease and the doctor will give you long term medicine to help it.
With proper and timely daily self care this inflamation subsides back to near normal walls.
Sometimes this condition can exacerbate and the wall become broken, perforated.
Requiring an intestine ' resection ' bringing the two good ends together.
Sometimes ' diverticulitis ' may also be present within the area.
During any operation the small pits are sealed, closed.
Crohns and Diverticulitis are chronic diseases.
These are the very basics only !
NB: Just an external word here for a moment. There is a larger reason this is deemed a copyright page, this is a personal reading page to help people and too often those such as pain clinics and other individuals cannot be bothered to put the effort in to re-tell a helper instruction the way it was originaly intended and written with true care in their heart. They take it upon themselves to miss steps in understanding. If you use this for others then please supply this text while speaking, or better, simply let them visit here instead and read for themselves. Thank you.
Important Link : What to know about ileus ...read for those with difficult output
MAR2020 : Feel like my innards are a warzone, blanket bombed with med's that keep me alive until the next time !!!
. . . only just starting to come out of this giant double banger, small meals, all the right tabs/caps and rest 23/3/2020
CASE
- Moments of paralysed pain. Truthfully this section wouldn't be complete if we didn't go to the furthest ends of appreciating pain. In a different place and time in life paralysing pain would reference a person who has difficulty acknowledging their chronic pain with the context of not believing they can escape it's regularity, usually professional help seeing actuality is needed. This is nothing to do with that type of longer situation. The kind that i'm speaking about here is the far more direct and instantly disabling type of pain as part of your crohns or spine symptom, something that is actually expected to occur as a result of our disease. When we have our known crohns stricture play up and a flare along that part of the passage occurs it can bring a great deal of pain along with it, other times depending, we may hardly notice anything but a temporary mass per say, and we give ourselves the medicine and rest to calm it. But are also those maybe one or two times per year that we can literally get stuck, not just from any small intestinal blockage itself, but also ourselves psychologicaly. We may be sitting watching television after dinner, in a busy world we may have forgotten how things have been lately because we're exhausted from the day, or otherwise had an unknown difficulty internaly during our sleep only to wake up burping, have breakfast only to suddenly find at some unreasonable hour that while we've sitting there we have become terrified of moving our abdomen a single inch. For to do so might, can, and does send a first then further spasm of pain through us. We of course put ourselves into a tight guard position to not disturb anything until it dissipates. Indeed that technique can sometimes work if we are already lying on our bed on the side we know will eventualy become clear of all three gas, food/bolus, and reduction in our intestinal wall reacting, the very reason for our crohns. It actually helps to keep this last bit as a picture within for our daily lives in case of a flare, as an image of how it is can be is helpful for imagery based people, others can be technical based thinkers, this plus this equals. Either way there are times when resting it off and away is simply not practical, such as when you're out and about and it stops you in your tracks, then we definately need to do something to break free, to have a technique to escape a sudden paralysing pain, from letting us get up out of the chair of the cafe to walk the rest of the way, or let our foot off the brake to drive off home. From an old movie decades ago i resolved one day to release myself from such an incident, i literally decided i needed to slow my approach to getting up onto my legs, choosing that it actualy wasn't going to matter how long the next bit was going to take, but just so long as i put all my will power into it, to be completely sincere with myself all the way through to the core of id, and so on. If half an hour was going to be the bare minimum all the way through to a few hours then so be it. So long as no one came along and bugged me to get up and i quietly made the serious effort, i should be able to get up to go and get my medicines out of the cupboard across the room or down the hall. It's never going to be easy, no matter what, so relaxing about the situation was my first imperitive. Getting all massively anxious needed to stop, plus telling myself that it may just not sting me with pain every single time of one of the abdo movements and making a little at a time was more important. I got to my cupboard and water. I took my special medicines and the heavy duty relief and got the rest of the way onto a warm bed to lay for me on the left side so my upper stricture would clear a little sooner and i would begin to hear normal activity on the right side too. Thankfully i fell asleep, partly a result from the obvious stress and because i tire from other medical issues also. For me it was about winning to look after myself, that i refused to give up on myself, not just some 'you can do it' silly talk. I will never declare as some foolishly might that anyone can just unfreeze themselves at will. I have suffered other times where i have been completely intact but the pain has just been so very exhorbitant that physical movement is truly impossible. That's when you hopefully have someone else about your home that you try getting to call an ambulance urgently for you. It is genuinely the best pain relief foremost that will allow you to begin speaking fluidly again to those around you, allowing you to explain more fully what you know went wrong inside a part of your intestines. That done, you can then start doing the rest of the things on a general get better and back to normal list. All the while hoping you'll be over the hardest part by tommorrow or the next day. And then have the stamina to make the increasing number of better days to effect life without sliding backwards. Start the re-focus of your next priority to step through remaining well while still trying to take a little sustenance here and there but not fall over again. Do nice basic food rules with yourself, not all specy and techy what you think might help, just simple basic low soft wet food intake choices only, not the clever thinking we all get into with our minds. Hopefully this typical case has given you insight you can use as well. Be well, stay well for longer till the next flare up. Remember, when you get stuck solid scared, start with wiggling your fingers, onto shifting your whole arm, feet. Never moving for a day waiting for someone to come home is not realistic for usual life. It's the little things that can help most on your way to get to your meds. Don't let your day, then night, go to waste, Little things !!!
Crohn's Fatigue . . . your link for today . . .
No one ever believes you / we can be extraordinarily tired out . . . ?
Having a read over these helpers just might help your one . . .
Part One Part Two ...hopefully these helped ?
Problem is it just get's you out of the blue !
CASE 2
- Let's do some simple and kindly chemistry for ourselves. I work really well with opposites in life, and this next bit is fairly ironic. Elsewhere on this page is a short callout for someone to come to our aid with re-issue of diastop, have a read. Besides the obvious, i came to like diastop for another reason too, if you are already atuned to your bowel motions and never give up hope on your bladder working correctly again in directing fluids away from your intestines instead of the runs, diarrhea, then you should read on. The following completely depends on diastop, not imodium, being present. Given that my particular omen when it arrives is ironic, that i'm usually fighting firmness with wet foods to arrive at a weekly balanced output, so when i get some common virus into my stomach or s/i it usually means a very bad ride for the next two weeks. Fortyfive minute naps between toilets, lying on my good damaged spine side, a warm under blanket and a small light left on ready to go. Upto sixteen or twenty of these trips over the day and into the night, why because i can't take codienne to solidify because it burns my upper stricture and gives off a strong inner distaste which is unliveable, and not imodium because it blows out my walls around the stricture, here's where diastop does it's magic. From the moment i realise it's full on vicious wet cycle i take two, but i've also figured out over the years that it also gives me second chance, i will always do the proper stool sample procedure to check for a bug or virus in the background, but i'm personaly off and away to getting myself repaired while they use the time to grow a culture i can be doing well by me. CASE 1 above is an intended collection of multi-speak to get my meanings across, this one is more straight forward. I would normaly never mention medicine names but i will here just for us crohn's folks, to cut down on the obvious reactionary viral attack, given that we know certain crtieria from years of experience, i begin with a single panzop in the morning, a means to an end in a normal crohns flare episode where fasting is required near the end before any next possible food, is used here to calm any flooding of your normal stomach acid in order to reduce the amount of food being chomped through and speedily going to waste at your output, put with this two immediate only diastop and you have a fairly good quick control over the situation, except for one thing, the virus has to be dealt with. By firming things up it gives you that most needed space in time to eat something that can go a long way to defeating it, without worsening your runs. So, for me i make a lite curried sausages meal, but not just in any manner. To get better we need to be relaxed and not have tensions and excitements around us, same here with this. I grab four franks out of the freezer and put them on the boil (skin peeled later), half rings of onion in a small olive oil pan, with a tablespoon of standard hot curry powder, half cup of minted peas, and long grain white rice to stir through evenly, a little salt, hot water, the diced sausage, simmering and currying away. Meanwhile i put another pan of just plain white rice to heat through, while boiling skin peeled potato's that are later fried off in oil or butter. Have a look at my finished video here to see the parts and meal (download and keep if you wish). A thick piece of white crustless buttered bread on the side. Eat small, not plate loads! Centuries ago varying peoples realised the value of specific foods to help remove different ailments all while feeding the body, an approach anyone can use. With the diastop inside slowing your intestine activity you can put to use this very timing with a recipe to feed your bloodstream with goodness, the very thing viruses don't like. Some choose really strong ingredients, but often it's the weaker that do the work properly. At this juncture, I would never say here you shouldn't take whatever medication is offered after your stool test, but do remember that some things also don't mix well with certain foods, this might be that one combination against you, generally either this strong food, or medicine, not both for the very reason of further and stronger runs. Now, serving this food is not simply digging in and eating it all up, with tongs plate-up just a small amount of the curried sausage, alongside just the plain white rice, and potatoes and bread, do not add any sauces, a little red type wine, not a cutty white, is okay. Do all this correctly with a simple cup of tea, never coffee, as your after drink, and no dessert. Remaining relaxed without excitement around your intestines for the evening, and keeping warm in winter months will absolutely go a long way to letting you feel better sooner than waiting for just nothing to be done. You will be bouyed by the progress this can bring, and yes your diarrhea may show up the next morning but it will begin to be the end of your woes. If your situation started back on monday, and you've been doing it tough with everything all over the place then you will need to have started an action plan before now, this is such a plan, here on friday. The point is the curried sausages are your little miracles as they move through along with the other relatively dry ingredients, between your quietened intestines, expect tailpipe exhaust, but it won't be off to the toilet. Follow up with another panzop re diastop in the morning while keeping an eye on any stomach loading, like from your intended dry breakfast, toast with butter and little jam, not wet cereal, and cup of tea. It's about grouping together specifics and not breaking that promise to be exact, one morning very soon after those nasty niggles in your guts will be gone, you'll be so pleased to be up and about finishing your clothes washing chores, truly! In another day stop the panzop, a total of two days only. Your blood and guts will surely be a little better conditioned, you will have rested better by judging your times up and down from bed to toilet, and can possibly go to half diastop tablets, then stop. It's not expected you eat the actual curried rice part until much later, or for another person at home, simply too strong in one go, just the sausage only. With all diarrhea stopped you should be able to slowely head away from toast back to perhaps a wet cereal again, whatever was your balance before all this began. Diastop, genuine dry help while repairing yourself. Live life folks!Follow up: Missing raw skin: At the end of the day having to put up with weeks of watery output for the lack of known medicinal help being available as standard is definately not sustainable for those who live with both severe abdominal discomfort and spinal pain respectively. I enquired recently as to what can be done, remembering a discussion with a doctor mid hospital hallway at four in the morning years ago, and declining a rectal tube at the time. It appears that such helpers, let alone diastop availability, is actually not present for ED attendees at their wits end from the ever wearing getting up and down from bed to empty out, including it's own high level of exhaustion in a hospital environment. It's not really good enough to be honest as there should be both remedies, or at least the champion tablet form of control to quickly return back to normal life. Let us not have a medical society that doesn't wish to address all issues. Both unliveable abdominal terrors and neverending bones not fun. Please supply both repairs above to ensure folks get back on our feet for remaining lifetime, not be worn into the ground. A better future.
Please never let another person leave due to miserable body and weakness. Thank you.
( And surprised at my local hospital for their reply. )
Conclusions, of sorts: Anticholinergic issues with diastop. The above diastop medicine apparently caused anticholinergic issues in the body. The following relates only to the effects of such a reaction and no background history as to how it was arrived at, or the resulting loss of medicine. One online article noting it may still be helpful if used short term, and honestly that's really the only length of time we would require. Basically as follows, an anticholinergic is a substance that opposes or blocks the action of acetylcholine, it inhibits or blocks the action of acetylcholine at a receptor site, and in turn acetylcholine is a neurotransmitter that is a derivative of choline; released at the ends of nerve fibers in the somatic and parasympathetic nervous systems, and finaly, choline is a B-complex vitamin that is a constituent of lecithin; essential in the metabolism of fat. So, given we can help most things, it would seem not impossible to negate even the smallest offset by helping with supplements, if only diastop was actually available to know for sure. I don't suppose any of those writers out there tried a few tests before it left us? What a shame losing a good medicine, so my original question still remains, can our medical society please reintroduce this for us please, even with conditions of script and or sale? It would definately be worth the effort.
CASE 3
- Neck: Keeping it straight and vertical. It becomes obvious both by feeling specific location pain and recognition of the spine process, perhaps by viewing a model with your doctor, and its bone shapes and protrusions how easy it is for agitations being setup after some incident, such as reaching low under a table picking something up, or thrown from a bicycle and twisting it as you land, or simply straining by lifting something far too heavy or odd shaped can lead very quickly to severe pain in the neck. These are all examples of having pulled tissue out of normal position, or shoved it against and into bones' way. The agitation continues on as the inflammed, enlarged and hot, internal area keeps rubbing away at the same spot, around vertebra, perhaps between the sides of discs. It's at this point you need to give it some immediate first aid to relax the surface muscles and hopefully inner soft tissue and nerves. At these times use a cool gel such as emulgel, never a hot topical that some might recommend to you. Only a day later when the main severity may have passed you can give the back of your neck a warm shower over the area to take care of any longer lasting peace, and further gel if needed. Remember to walk and sit with it relaxed but vertical until the pain subsides, and then onto normal activities a week or two later. And just as any of us can purchase a foam sling for an injured arm you can also buy a foam neck brace to help keep your chin from dropping too low due to the fatigued neck painful muscles can cause. Unless discussed with a doctor, wear it only for the duration of repair time needed. Outside of acute pain there is a range of other circumstances where longer wearing may be required, not least an eventualy non decision for surgery for the lack of accepted threshold requirements, ongoing chronic neck pain can damage a persons life forever. Soft tissue against bone agitation occurs far more often than medicine allows itself to determine for people. Only a concerted daily personal management can allow you a level of normality. Live as you can, chronic pain folks.( I will write more here as time allows )
CASE 4
- Complex Things and Mental Health: One would not normaly associate being spinal and abdominaly unwell with a passion (usually something no one else wants to do, or has time for) to help your local club, service or organisation particularly as you know it would release the hounds of assumed false claim by those who regularly go to work hard somewhere for pay and the masses expectation upon all others is overbearing at best, much further, particularly when you've already worked most of your life anyway with self expectation - but also a realisation of your body's new sickness burdens. That would be seen as blasphemy even by you - but wait there's more, twist that one more time in a third opposite direction that is edging on complete failure of this persons wellbeing, that you profoundly feel inside that you're not even going to be any good at whatever it is you get to try helping with even when you do finally get along to it one day. At that very point i could hear the self-helpers and righteous yawning and screaming just get on with it. Understand deadly sickness before you have the thought that utters your words please. I would not get to hear the term Imposter Syndrome for a long long time after beginning trying in little ways, all the while fighting with myself to just go and try anyway. People around you that are already on the few accepted standard paths in our kiwi life all together just have no opposite concept of what's going on inside the person. And truly, it really really stretches your own ability to cope in every direction, every part of you. I never wanted so much to escape my terrible health conditions and be well again while wanting to get back my original working life while believing there was not a show in the world i could actually achieve anything legitimate in others eyes. Something i briefly reflected on back in the darkest parts of page one. I was about to write a parallel example here but really i just felt i couldn't for all the forces at work against me, to just stop before ever starting. And yes, certainly, welfare policy does come into this big time as when you're on a benefit there is no just normal social place ever offered to any individual stuck in that locked in situation, a very terrible feeling. So one day in the midst of being violently ill you have this last or final life mindset come over you, that all is lost with both body and peoples mindset that cannot be healed and the disease will never really ever have any cure, so why try. But there's this tiny little iota pride in living this long and going through so beeping much of various hells in your decades ages, that it just seems beyond the worst a feeling like none other to commit social and political suicide in the eyes of everyone, to just finish life by doing any help and accept you'll run your body into the ground once and for all, so you try. And you do, and you immediately start paying for it from your body complaining bitterly with serious pain and heart problems, you get all nasty inside your self with i'll show them accusers i can i cant i want i fail they win against me, while your mind says 'overall, what have you accomplished anyway?' the answer ever more self doubt now with others chiming in to your already stupid headspace and welfare chasing you up. And by then if you have'nt realised to self it's now got out of hand with your body, you WILL definately die because you've pushed yourself too far and too hard in you earnest to proved to yourself, and separately everyone else, while not appreciating reality that if your'e shaking with pain from just doing some one hour of very little effort then you need to tell yourself in no uncertain terms to stop. Stop Now.And that is, all of what happened to me, you literally specifically come to a stop, your body cannot get up, even when your mind is saying if i just did a little less it would help, but your'e actually just kidding yourself by then. You've done that one a few times already. Since stopping i've realised all that big endeavour was spending my overall health currency while having not much left for my future old age to just not even move around the house easily physicaly anymore, and that just wasn't okay with me, i'd basically got this bee in my bonnet to go prove only to fail self, i asked self was it worth it, i said yes back, because i bothered to. But the real hardest truth is that it's stupid when you already know youv'e only got less left already with your previous work life upon your bones added into the mix. I ended up changing a number of daily object shelf positions for easier reach, taking better medicines to manage all the pain and try to stop looking insipid from serious daily sickness, to even try getting any little warm glow back into me.
I would say this to anyone who was contemplating pushing their own limits, seriously to be far more reasonable with your self's body and expections upon are unrealistic if you have three big things going on inside you already. Stop yourself going further, or the very least to set your wild excited horizon much lower given your health status.
It's not worth your actual mortal life getting all clever. You are making your mind suffer too. Unsustainable.
The things we cannot or don't want to see before starting down onto ourselves, folks.
Once a lot of fatigue swaps with nurturing your body thanks you.
Be sensible for once in your life !!!
https://www.verywellmind.com/imposter-syndrome-and-social-anxiety-disorder
( ...and yes, it's very real, please do add it into the psych Manual soon please ! )
( ...i also thought i'd have enough time for that, AND do my heath stuff daily ! )
( ...btw, you CAN die from any disease, if exhausted and finaly give up ! )
CONSULTATIONS
The normal path from unwell to better...
Most folk become unwell with any particular ailment and go to see their Doctor. They're happy to allow them to check for diagnosis and write a script. Medicine is taken and life goes back to normal. Further down lifes path they may find another which happens to be coincidental, connected, or result of the original problem. You then need to keep a check on this development for longer than previously realized. Perhaps the rest of their or your lifetime.
It has become something more than the first signs. From this time onwards it helps to become personaly proactive about your ongoing situation - as no other person can do this for you. Before travelling to your next check-up spare some time to write down any couple of things that are pronounced about your well being. As part of your consultation discussion speaking these issues may help with better understanding and medication.
We all start out quietly with our Doctor. But learn to speak up when you have times that seem to not have a better outcome for you. There's little point continuing a medication that has truly no objective or positive result for you.
Speak it slowely, speak it kindly. Doctors, although a business, will always listen if they care.
We can all help life along by the way we show our interest for ourselves and others.
There should never be any endpoint to that particular outlook or view.
EMERGENCIES
Personal Health Emergencies can happen anywhere, at any time. We become familiar with reading about crashes, sickness and the like through media and people around us. Not so familiar are the few times over the years that we ourselves become entangled in a poor health issue. What and how are always important pointers for us...
Never listen to others who say 'Oh that's nothing I get that all the time...' you are yourself, not another. Having a feeling about how you are is the bodies way of asking you to focus and define if anything is going on inside yourself. Being unwell does have a particular look about it, but not always. By understanding how life rolls along we become natural listeners to how we are. As many have learned preparing for that time is not so silly if it helps us recover.
I keep a large sports bag handy at all times for just such an occasion. It has a dressing gown (evening coat), socks, t-shirts, in fact all things to see me stay over for days or weeks in a hospital. Including medicines and medical notes. Without this, life in a bed, in a room, can be cold and hard to cope with in the face of illness. After a sudden procedure or operation this one bag contains my life. It can help give you back some humanity and comfort afterwards.
From the moment your body feels a little different than usual while ploughing through life, you need to ask yourself how things are right now, not later. Continue on, but keep a check on things, head back to that question as needed, and don't let it go over those days or weeks. Only stop when there are no other signs of a problem. If some time has now passed, and something is getting steadily annoying you need to see a Doctor sooner than later.
So you're not realy sure either way? Trust me on this, if you have been having some little nagging pain somewhere and you keep putting it off, then you will have a medical incident. For you it may be first thing in the morning or late one night when you're exhausted from the days work. But it will happen. It is right at that moment that you need to sit down and ask yourself if you need to be phoning for help, or not. Decide what is best for your life, right now.
If you are reading this page right now with a possible problem - Then err on the side of caution - Find help !
Based on what you already know just make a few notes with pen and paper. Write down how each of the past few days have been in your life, how your body has been operating, in the order of how things have happened. Keep these things in mind for when help arrives, speak this knowledge to them so they may help you better. Don't wait until they have arrived to figure out your health signs. Too often confusion reigns in the face of distress, speak carefully.
These days some people still hold back based on beliefs from older values. If you have been experiencing some physical or internal difficulty over the past year or two then you are most likely heading towards a medical event. While luck plays its card no one gets away free. Go and see your Doctor, or at the very least your local Nurse to get advice. There is little point in holding out for "...things will come right" when something massive may happen soon.
Before leaving turn off your heater and any other electrical items, put a spare bowl of food out for your pet, leave one (low wattage) overhead light on, leave your fridge running, let a friend or trusted neighbour know what's happening so they can watch your home. The last thing you want to come back to is a starving pet, burgled home, or a huge power bill, or worse. Prepare for your future life always. Taking chances is for people who don't care about themselves.
Once help has arrived, go with the flow and speak your knowledge as they ask you. Every trip is different for every single person. This may be the quietest ride you've ever had, or it may be that one time you need to step up and let your body defend itself more than ever before. Don't let your mind get in the way of progressing your health. Relax and let things happen that need to happen. We guess, medical staff know, all the things that we do not.
Soon things have settled, and your condition stabilized, just rest. Your body may be on the way back from somewhere, or waiting for the next step in help. Doctors may present you with options or surety as time progresses onwards. The next morning of that sleepless night will bring light in the form of a diagnosis, a prognosis, also perhaps an operation or procedure. Always think of your future life first. Before the here and now, outside life and bills can wait.
Fortunately operations these days can be less tiring or fatiguing than in the old days. As medicine learns new ways we are repaired sooner and can return to our daily life. All is not lost if we awake drowsy and with introveneous drips in our arms and a beep next to us, quite the opposite we are most likely on the mend from that point on. It just takes a little more time than we're thrilled about to get back on our feet. Allow your body to relax and heal properly.
Let the staff around you know what, and how you manage your other health issues, and what they may be able to help with during your stay. It can be the difference between an exhausting and painful ordeal, compounding your immediate health problem and recovery, or a short easy visit. Continuing your normal medicines may help. There is no point lying there in a bed not speaking and trying to be a hero not causing what you think is a hassle for others.
As time passes, we hear the tea lady, sounds of the night, and lights. One of many Nurses comes by and checks your heartbeat, a blood sample, a painpump topup, a bag change, another new day. We are actualy alive. Yay! The future seldom waits for us, soon enough we will be up and walking about in some manner. Doctors on their daily rounds will announce your short or long term lifestyle change if needed. Appreciate what they say, it is your new guide to life.
Before leaving a nurse will hand you a copy of your medical notes. Keep these safe and make further copies if needed. They are the only record you carry through time that displays your health for a given moment in your life. Given that you have just been through a life event adjust your own view to slowely getting dressed to leave hospital, don't rush. Going fast hurts and breaks. Keep this view with you until you begin feeling better and become active again over the weeks.
Putting your key in and opening your front door has never felt so wonderful. Sit at your dining table and let your home welcome you back. Have a think about what food needs throwing away, and what needs buying right now. Perhaps see if a friend can pick up a few fresh things and drop them off on their way home from work. If you feel like sleeping then sleep, your body needs rest and suitable food, not just anything. Take a hot shower, relax your scar, watch tv.
As you unpack your clothes and things review what happened perhaps by writing it as a diary or by chatting with a friend, this helps acknowledge your health in case it comes along again one day. Watch for similar symptoms that you had that day. Sometimes a similar feeling as you originaly had can be a good warning, again. Some folk can feel more than a little afraid if it was a terrible time originaly. But you be in charge of your health - Never let it scare you again.
While you're taking care of your body, help your head a little too. Its not every day you need to make such a serious choice to tear yourself away from normal life and its chores. Too many people these days say what nearly kills you makes you stronger, don't you believe it, there's no room for heroes in this lifetime. Only people who tread quietly get through the toughest moments. That I am certain of. Relax your mind, write it out of you, listen to peaceful music.
Travel slowely and with care. After a few days of lounging around and resting back home, phone your Doctor. Let them know you have had a medical issue, and been at the hospital for the past three weeks or so, and arrange a follow-up consultation. While there listen to advice on what you need to help yourself with for the future of your illness. Ask all the things you are curious about the ordeal so far, and make notes to read and remind yourself later to stay on plan.
If it was a broken bone then rest and ask for help from those around you. Do some exercise, but limit lifting that may strains other limbs, torso, and spine. If something more severe and internaly enduring, then rest for longer periods. For now stock your fridge and cupboards with only the things you can eat safely. Eat many but smaller meals to increase the ability to stay well without suffering. If tired then sleep, for times when you need to be up during the night.
There are many different types of things that affect all of us through life, not just one. If your stay was to give you peace of mind, then let your thinking rest. Your inner psyche may have been working overtime recently. One of the best things you can do right now is stay with just simple house chores, long walks in the sun, caring for your pet that's been missing you, tending your vedgetable garden. Chatting to a close friend can also help communicate with the world.
Unfortunately the world outside and around us is all too often a loud fast place. People do talk faster than they realise. When you are unwell life needs to go slower so you can read your minds' health signs. If only others could see us as we are inside they might slow themselves a little if they wish to really help us. Indeed 'be patient - patient' actualy goes both ways. Important things can get missed by both people, keep the communication going everyone.
Trust me on this, there isn't a human being anywhere in the world that hasn't lost their internal peace sometime.
( For crohn's sufferers : How the Gut's "Second Brain" Influences Mood and Well-Being ...have a read )
Without doubt having your own settled quiet home to head back to after all this, is always best. Wherever and however any of us lives dictates how fast we get back to life. Some live in their family home where Parents help daily, some a noisy appartment block, others a two bedroom house, still others a boarding room out the back, alone. We all survive lifes hardships in one way or another, and making our lot in life safer, simpler, and peaceful allows us to rest.
For long term illnesses you may be asked to visit a Specialist for your particular health issues. This is where you may need to delve into new knowledge, or separately research for your illness. Understanding the intricate mechanisms to yours may be just the leveredge you need to live a normal life. Overstating things to yourself can be as harmful as not knowing anything at all. Learn new parts. Be open minded to adjusting your view on specific points.
It is easy for any of us to become phased or overwhelmed by a health problem, and we all tend to kick back at the things we don't want to change in our lives for illnesses to not have their own way, but we need to. A willingness to survive any darned thing is what separates us from those who vanish around us daily. We must love our lot in life enough to be prepared to go through ongoing health issues. Never let others slow you from good health.
Down life's path, after the operation, keep life going, change to new interests. You may be older and wary now, but there will always be something you have never tried before. Change medicines if you need to, your body changes through time. This is the very nature of life. If you have always been active, this is as good as it gets. Let yourself understand this. There is absolutely nothing wrong with going along slower to stay alive.
Be happy with yourself, only you know what has happened, because you have survived this, not others !
Some have very dark days about their entire experience, its not worth losing your energy over !
Avoid using up all your other health resources, have this shower therapy for yourself !
If this all came about through no fault of your own, do not worry !
You are stronger than what life has done !
( Other times to consider a shower therapy is after suffering multiple diarrhoea sessions, it wonderfuly warms your spine and helps your nerves feed better signals to calm your instestines back into a normal rhythm. Makes your life more bearable )
BITS
With every flare-up of any Anything we learn more...
> Crohns: Not all events are the same but : The more self-guarded your abdo' the longer to recover, the problem is for each of us to learn how to 'allow' those muscles to relax, easier said than done, breathe regularly not just in long then short breaks.
> Crohns: While sitting-up waiting for your flare to subside, make yourself a cup of tea, the idea is to only take little sips and not drink the whole thing (one has to make a whole cup to get there), the idea is its better to drink warm than cold on such a body situation, plus it gives you milk and sugar too. Too much water will bloat you and make it all harder.> .
> .
> .
> .
> .
> .
> .
> .
. . . more added over time !
Best Christmas Ever . . .
One of my elderly neighbours had known I was ill for years, I was busy going through my own recoveries when he fell very unwell, he's been through surgeries and hospitals the whole deal, no one had seen him for months, we had become friends over the years and so I wished him survival in my own way, they thought he had about six months, and then on christmas eve he came to my front door and said merry xmas to me and happy new year and shook my hand smiling as he did, his now thin frame and white hair was so different but he was just so full of life I couldn't believe my eyes - and he knew it, that he made this trek to come over and see me was so wonderful. So bright and cherry ! ! !
He gave both of us a huge boost, he doesn't even know about webpages, any of this.
Thank You So Very Much
Merry Christmas and Happy New Year to all the unwell everywhere ! ! ![ 24/12/2016 ]
( made even better after i spent overnight a few days ago in hospital again )
( next year has got to get better than this year - seriously )
[ sadly he passed away the morning of the cup parade ]
[ https://youtu.be/Ee0yC2IIOpc ]
[ Rest In Peace ]
6 / 7/ 17
Scientists identify a new human organ.
https://au.finance.yahoo.com/news/scientists-identify-human-organ-181248506.html
[ see also: omentum, which is another helpful organ ]
Water is to carry medicine through, not just to swallow . . .
Tip of the day: Always drink plenty of liquids with your medicines ! ! !
[ ensure you have enough BEFORE you take your medicines ]
[ never get a burned throat or stomach ! ]
Morning is the time to listen to your abdomen, help set it up for a good painless day.
. . . a cup of tea can sometimes work better than water too !
Be well . . .
Hope all you lovely IBD'ers are watching that Xmas tucker ! ! !
Using a HWB behind your spine can help you go.
[ yep ]
MANAGEMENT
Part of being a human living in this world is that we accept that sometimes things can go a little astray just when you believe all is going to plan. As clever as we all need to believe those around us are, no one can foresee all given problems. All operations and procedures come with some risk of injury that we accept for the greater good of our overall survival. It's how it may have been caused, the extent of damage, and how it affects us within that matters most.
For example it is not uncommon for emergency and surgical cases to require a catheter to allow toiletry while we sleep and cannot attend the small room ourselves. Upon waking up or arriving home we may notice more or less bruising around the area, that may be rather painfull when cleaning, or uncomfortable while wearing clothing. This oversensitive feeling unfortunately occurs by the effort required by the post-operation nurse after leaving the operating theater.
Not all interventions are welcomed by our body and the following is another such example. Some internal surgery requires antibiotic medicine by way of introvenous drip. This internal cleaning may give a very particular feeling throughout the veins and arterys in some people. Again the amount needed to help may cause enough discomfort for you to discuss any further use with the ward nurse or doctor, with a view to it finishing earlier.
These are just two separate examples but it allows us an understanding of the reality of hospitalization, without actualy being there. Invariably some patients may indeed have both of these happenings, and further complications during their stay. It simply means we are riding a very bad wave, but one that will hopefully not last too long. Only recently there was a newspaper article about military staff with groin injuries that was heartening to read.
All medical staff and your doctor should be able to speak freely with you about these and any other problems. If all remains unwell your best advice is to write to the management of the hospital you stayed at for help. We are all adults and speaking openly and relative to the problem staff can ease our minds. It may take a little while but your unintended injury will heal over time with perhaps a topical medication and or rest. Be patient, patient.
It can be hard, and sometimes we just need to have someone recognize our situation for us to continue with life.
MEDICINES
Anyone taking medicines naturaly follow the instructions from their Doctor or label on the container. Some folk are fortunate to have an open ended regime, say of other pain relief, they can take almost any time to top-up their relief as needed to get them through the day. With some multi-conditions you need to limit the extra intake. Be aware always.
Always go out and about to get chores and purchases done when you're on top of things. Personaly, I never go out during times of pain. Moving about your home can be an almost effortless scenario for the unwell. Going out anywhere requires anyone to exert more energy, and thus experience body feedback in realtime, whether its just walking to a local shop or walking through a mall. Your internal and physical ability, and time outdoors, count towards tiredness and severe pain later on. Take your pain relief first and wait a little before leaving the door. Let your relief work first.
As simply a personal tip, I find that a small amount of Folic Acid (folate) taken each morning can help my mental fatigue during the day. So too with Magnesium which helps with nerve and general body pain. There should be no problem taking these after an operation, but always check first. These are just two at the top of my personal list but there are a number of others that you may find valuable. While reading up on them choose the topmost ones first.
When you do go out its best to always try walking and moving the way you would have normaly done before your illness came into your life. It not only makes you look young and fit again, but also reminds the body memory of how things were before. It can slow the onset of more dibilitating longer injuries with their own inherent problems.
Never worry about not going as fast as others on the footpath, but trying will help you continue life better.
Remember we are not all athletes, body builders or runners, chasing after medal wins !
Have a great a day but don't strain your body as it tries healing !
Right Click Save As: Medicines Reminder v2 (10Kb) HTA
Tip: Keep your cordless phone near you when exercising alone, better to be safe if a health issue arises !
DISEASE
All of life can be all encompassing, just like computer protection. As hard as this might be to understand, I never realy cared about my health. Working days just brought different problems. It wasn't until functioning got in the way of doing that I realised. Long ago I had an injury that I finaly took along to my Doctor a few years too late. And when my disease came along I couldn't run away fast enough from it. Both of these and a third item have compounded my life more than you can believe. I was someone who could never sit still but these things have put me in my place, and that is to slow down and appreciate pain. Understanding ones own age truly does mean not to take chances!
Beyond unseen injury, Disease is perhaps the most lonely of all illnesses. Not because those around you never ask after things, but because you are truly the only one that can know what you need next. Whether in a Hospital environment where it is quiet and others need help too, or getting your message across to your Doctor for the things you need, or moment to moment as a bad time unfolds over hours or days. Sometimes solace is your only friend, or times when you'd like to throw that out the window in return for a Nurse to help, or someone to just listen.
Having multiple illnesses can be even more difficult. You know how two different things are making you feel but cannot get the words out fast enough to effect relief. Because they are inside of your body, relating each one to the outside world can be an effort. Take it slow and let others fill in the gaps. In all these times take some comfort in knowing that so long as it remains manageable the difficulty will pass with time. Shorter, hopefully sooner.
The biggest problem with disease is that its persevering in manner. Learning to catch the peaks just before they occur is one of the handiest things I can speak to you. It's your lighthouse for getting out of trouble using techniques you've picked up along the way, or gives you time to phone for help. And it lowers the knock-on effect to your memory of your entire situation, in other words it helps ease things overall. Historicaly, it means less poor memories.
The biggest help comes in the form of Hope, yes Hope! When times are hardest think in the opposite direction of where things are at, and remind yourself of all the things you still want and need to do in your life. Have projects that are never quite finished but that you enjoy going back to. Find the comfort that helps.
Remember its a time to forget the rest of the world around you, and all its goings-on, all of that can wait for later.
Most of all quietly afirm your own value in the world, and never let anyone else change that !
Progressive people are not interested in truth, it is your life - not theirs !
ABDOMINAL
If you have just arrived home from IBD Surgery (including possibly diverticulitis) upon your intestines then you need to realise a few things we all take for granted as normal. As difficult as you may find it, eating food helps you go to the toilet, the more output you have the less faecal loading, and therefore far less discomfort or even massive pain, you will have to endure in either the short or long term. And that's before you arrive at understanding all of the regular type of pain crohns comes along with each day. Reading up on your crohns intestinal wall will help you understand this pain.
Lesson for today : Eat small meals through the day > eating pushes previous food through > helps empty your intestine.
Next : Do NOT take headache relief such as asprin (medicines with salicylates) which inflame your crohns intestine.
( Ask you doctor for an alternative to relieving yourself of headache. Various products also have this within )
Read : https://crohnsandcolitis.ca/Living-with-Crohn-s-Colitis/Complications
HELPERS
This section is written for those have spent much of their life performing very fast physical work where the body has become irreversably compounded by ongoing painful injury called Chronic pain. It is not intended for Acute one-off pain areas that can be dealt with by medicines, massage, various available therapies, or remedies.
The following may help you live a slightly less painfull daily life by following some simple guidelines...
First, don't use hot, for an already multi-pain sufferer, feed the painful nerve soothing only...
SPINES: For low back pain avoid wearing tight clothing with tight choking waist bands (including underclothes), leather belts, choking leg widths, or tight jacket waist elastic. Replace those items with lighter clothing to take the added stress off local muscles while moving about daily. We all like wearing jeans but they are a case in point, buy track pants instead. Restrictive elastic aggravates muscles, and makes hot muscle-rubs even hotter. If still requiring to perform lifting then buy a wide elastic belt (with velcro connect) to put around your waist first, remove afterwards. Leaning over a work bench is another killer, either sit with knees under the bench, or standing verticaly while close to the edge, and let your arms do the effort, instead of your lower back stooping over to reach everything. Add tools (and reminders) to your lifestyle, such as telescoping magnetic pickups or hard-to-reach claw pickups for light objects. Keep regularly used items in easy reach such as the next shelf up from the bottom, or down from the top. Work around something you are doing and not reach across it, like bed making. Use a ladder to change that bulb, not reach to it.
HIPS: One of the reasons that it's important to identify with labels such as Necks, Arms, Hands, Spine, Hips, Groin, Knees, Feet and others is to differentiate while knowing they all lean with their weight and torsion upon each others supporting structures down to the floor, and because they each have specific characteristics. This is important even when talking in simple terms about the body, for example the piriformis, a nervy spot location, and/or numb front thigh, a ball joint there, a loose pelvic bones/cartilage connection (not too different from clicky hip) can all add up to cause severe sudden pain. We each that feel, pain on one side can be attributed back to some event in time. Suffering an acute on chronic pain where the effects of that belt of pain radiates into surrounding soft and connective tissue and muscle and affects tendons when we ask it to, say, stand up suddenly. Can very easily become immediately long term and almost no amount of laying on the careful exercises will repair the physicality once done. For me these things came into my life via the bike crash, not a day goes by that i get up from a seat without holding on, waiting for it to pop back in so that the now dry piriformis is not strained and causing severe nerve pain for hours. The absolute desire is for no further damage to that important tendon slash nerve area. Extreme as this may sound, i do expect to be in a chair one day because the entire elasticity will be gone and the only way to get any peace will be to remain sitting while moving about, motorised by my own arms that leads to my two neck issues, and we know again how that will affect my life already, then perhaps an electic wheelchair. The quality of life must always come first, even as our age is forever against us. Don't believe for a moment your pains become less prounounced or dulled over time, additionaly pain psychology or not the pain will remain and it's absolutely why every person must lift objects and packages carefully and mindfully to avoid these very poorest outcomes into our futures. Don't push it - Take care of all of you !!!
GROIN: Groin type injuries are a pain in the proverbial and can definately stop you enjoying any relationship: If your'e anything like me and you've had a whole range of injuries and still trying to cope over the rest of your lifetime here's another pointer. Literaly the pointy problem of a multi broken tailbone and trying to sit down (or even on some days just walk about) especialy quickly onto hard surfaces or the hard edge of some chairs just don't work. Unknown to most there's actually a range of ways you can suffer one of these, everything from dropping down hard onto your bike saddlebar to falling and partial impaling through to the typical high school hard kick between and flooring you. ALL extremely painful and can leave you with nerve issues forever after, not least for a male along the underside of the private area right to the end. As a kind of parallel you may remember i mentioned elsewhere how having certain abdominal surgery where they enter down the front and through your tummy button can leave some patients with a particularly sickly sort of feeling on and off for years, so too a much more painful feeling in the end of your privates where it's most sensitive. It's much more than simply an annoyance with everything from underclothes triggering to toiletry pain, and there appears no available repair, so the next best thing is to wear light clothing and laying a soft foam squab on any regular chair or seat you use daily. As a form of chronic pain it is a sharp sudden pain unlike other types of injury that lasts many hours over each day. There's also no medicines or topicals except perhaps numbing gel for the underside, the only real help is to avoid aggravating the area entirely. Clearly ask for multi-angle x-ray set to determine which exact segments of your L5/S1 down to the tip have been damaged, not just the coccyx alone, and in what manner they are damaged with left over symptoms. IF at the future time of your injury DO ask what surgical remedy could be offered to avoid a remaining lifetime of not just discomfort but straight out pain. A lightly inflatable oval cushion can be your last option to keep your tailbone off any surface at all, the only offset is that it feels you are floating while trying remain still and relaxed, but still better than sharp pain. Best wishes on your personal pain management !!!
( https://www.spine-health.com/blog/chronic-pain )
NECKS: One of the most sensitive areas in your body, necks are naturaly prone to pain in the modern world. We all ask our necks to bend in every possible position, all that with a great weight on top. Most of us older folk could still have happy necks if someone had bothered to speak up with their ideas. Over the years the angles we could manage become more limited with either increasing pain or bone and muscle problems. Speaking about good posture does nothing to help without examples right there and then. Along the way we take all manner of relief, but sometimes the best is simply by keeping the weight of our head off this once flexible stem. Reaching for low items by squating with knees bent helps keep the neck and head vertical. To open windows high up use a tool to help, such as a pole with two notches in the end. Think ahead to what daily things you need to do and build or buy specific items to help. Your immediate goal in life is to avoid three days of massive intense pain, and loss of life times. The overall goal being to minimise even small pains through the rest of your years. Another is if you sit in an armchair, keep your elbows down by your sides, away from the chair arms which can cause pressure at the base of your neck. Only use them when leaning back. It comes down to height of chair arms and/or length of your upper arms to shoulders onto collar bones and then trapezius muscles and vertebra. Likewise when you go off to bed, your pillow not only keeps the natural curve of your neck braced when laying flat, but should also support you lying your head and neck either left or right, without pain accumulating by the morning. You shouldn't need to travel through life rubbing topicals into your muscles every single day. This is no advert for below, but going through the tricky best pillow for you quandry can help set you up for years, at least until you might be older and need to make some small change with a different shape.
- The following diagram is, again, for the use by Chronic neck pain sufferers, but Acute may also find this briefly helpful.
Always use a plastic or latex glove so you don't get your chosen topical, such as Tiger Balm ( real ), in your eyes after.Personaly i prefer the White ( not Brown ) version of Tiger Balm as it seems to help better for me...
Rear of body view...
zzzzzz
The muscle terms shown are : Temporalis ( slightly forward of upper ear ), Splenius Capitus ( follows horiz line back of skull ), and the Trapezius ( at back of shoulders ). Place a Lite amount of tiger balm on a gloved fingertip to these areas. It will feel hot upon the skin at first but does settle and then changes the tone of those muscles over the day.
The reason i chose this particular topical many decades ago is because of the many helpful ingredients that make their way past the skin and mend the muscle under pain duress. Always ensure your'e buying the real and not a fake jar.
You may also wish to take an Over The Counter pain relief such as paracetamol or as offered while there. The idea is to rest and do no further physical activity whatsoever, see how it feels the next day, repeat if needed or see your doctor.
Some people may have sensitive skin so avoid the stronger Red tiger balm which may ' burn ' the skin.
- If you have neck pain problems, like my disk vertebrae and narrowing around nerves, then help keep it warm and flexible in winter, and use muscle anti-inflamation medicines to give the rest of the help needed to function as best as possible for a person. If possible find and wear higher-neck tops that zip-up under your hairline at the back, along with a gel for that pain. Plus wear a wooly hat to avoid pain travelling up onto your head through nerves and bands of muscle tone. Remember hot tiger balm atop shoulder type areas only, and cool gel around sensitive tissue that the hotter balm annoys, makes your pain experience worse!
- NEVER use an Impact Massager on or around your delicate Neck during your lifetime !!!
- AVOID them, their damage says it all in the Advert : Electric Massage ' Gun ' !!!
- Sitting trying to eat yoghurt but your neckbrace spills it, tuck a tissue in !
- Use a Physio, who themselves avoid hands-on for very bad necks !
- Sales items everywhere reflect the maturity of the seller !
- Understand the ' action ' of any product first !
- Save (money) used Gel Tubes into a jar !
( https://www.sleepfoundation.org/best-pillows/best-pillow-for-neck-pain )
No one ever speaks about tools to help spine/neck sufferers, having to move first thing in the morning from lying down can be especially difficult. Here's one that helps me, find a one metre long (mild steel) rod that's only 5mm thick, get a friend with a vice to put a 50mm bend at each end, make sure they're pointed out the exact same way. One end works as a handle, the other as a hook. When finished it should look like a long thin staple, spray it a nice colour. It can be easier than using a pickup claw. Leave it by the bed and use it each morning to scoop up socks off the floor or drag shoes across to your feet, anything that's just out of reach. Don't let it get bent.
( https://www.spine-health.com/blog/9-lesser-known-tips-easing-neck-pain )
FOOD: After various internal surgery the intake of food is paramount to keeping your strength up. But eating our usual favourites is sometimes no longer possible. More often than not softer foods are your only real choice. And the correct type of soft food is more important again. What you were eating before going to hospital now needs to take a back shelf while stocking your fridge freezer and cupboard with all your newer foods. Preparation may take a little longer but its worth it if toiletry becomes easier, as a daily exercise. Spending time at 3am in the small room instead of sleeping steals time out of your day later on. Finding the right middle ground will always present challenges. If possible buy a little of each different soft food until you and your body become familiar, then choose those that worked well through you. Only go back to harder or stronger foods only if your body is ready to handle them again. Perhaps sadly there will always be foods we can no longer have, simply find another just as tasty.
HANDS: We only get one pair of these umm, handy things, so look after them like they're gold. As we go to pick things up to use, we are asking our forearm, wrists, and finger muscles to work in a very particular way. The heavier the object the more stress on all these including our shoulders and spines as well. How you regularly approach objects and how you lift them dictates how muscle tone is spread through the hands. Operating equipment whether cars, trucks, or levers also has a bearing on overuse, and eventualy fatigue. Just as we have eye exercises, so too massaging our hands can help with those types of tasks. Get a little olive oil on both hands, and just lightly spread it between your fingers, rolling your hands upon each other as you go. Let one hand of fingers comb through the other gently. Doing this while washing your hands is nearly as good. You are pampering the muscles you use daily. Wash and rest for tommorrow. It's the simple things around us. Use a thinner bath towel, they're lighter and easier to use for your limbs. And in the winter months wear wooly Wrist Bands (normaly for tennis) to keep your worn wrist muscles and bones warm. When picking items up like your kettle, try using your thumb straight into the upper handle and let your fingers grip the rest of the way, purposely picking it up (depending on the weight) at ninety degrees instead of positioning your whole hand around and onto the handle may help some pain cases by not bending straight out and tilt downward, and those who can comfortably rotate left may be better off. All pain is in the micro-movements we all do each day, you don't have to have some singular giant mechanical issue to put you out of life.
WRISTS: Speaking of wooly wrist bands, here's one of my remedies that comes in handy. There will come a point in time where, for all that you've been doing recently lifting this, carrying that awkwardly or regularly fetching something in a difficult way that you just suddenly cannot pick up another thing with that hand any longer, relying on your left hand instead. When your right wrist has got to this very painful place you can either let it hang down by your side and use the other, put the whole arm in a sling to stop yourself using it, or try the following: Go get your gladwrap out and slice off a one foot square piece on your bench and then fold it in half, now cover all around your wrist a lite coating of pain relief gel, place the back of your wrist down onto it and wrap the two ends around to the underside, still in position point your fingers together and slip your wooly wristband over your hand using your left fingers to expand it open and over the wrist, adjust to ensure proper coverage. Keep your arm wrist hand fingers down by your side for half to all day, this ensures no other muscles are pulling onto the wrist, it needs to seriously get some rest if you want to start using it again. Consciously let it be free next to you. Give it some hours out in the air without any coverage before using this method again. Afterwards, perform only lite duties with that whole limb, keeping the pressure off it will help most. Remember always, that lifting something even lite can cause a world of pain, chronic pain sufferers should learn to limit how much they use a poorly limb so as not to forever hurt. Doing just the necessities in life to get by saves you.
WARMTH: Warming your bones with heater troubles in winter? Turning one type of fan heater on during coldest mornings can suddenly begin to sound like a breakdown waiting to happen. The metal shaft although having grease at each end inside, can make quite the loud sound, as you hear it begin quickly turn it off and wait a few moments while that small amount of heat helps warm the spindle. It may even require a few more times, but should be all okay. Turn it back on low and hopefully all the parts will be warmer like any other normal day, enjoy the warmth. If this problem continues in the warmer months your heater may possibly have an issue, time for a new one.
FEET: Never underestimate these, they are the one thing that keep you moving about. We put one in front of the other, and suddenly your'e there. However they won't just keep going if we don't look after them properly. Toe bones, soles and ankles can all become fatigued if we don't rest regularly. Stiff joints happen and your feet will soon let you know by not walking anywhere. They will stop your plans for the day! Putting your feet up has never been so good for you. A warm footbath helps circulation, releasing inflammation, and relaxing the muscles. The shape of the shoes you wear, and the impact they can take away from your pounding feet go a very long way to having comfort. Arches are another case in point. Listen to friends who use sole inserts and try them yourself. And always buy the correct type of shoe for the purpose, and always the correct size and length to suit your unique feet. And if the souls of your socks have become sweaty and cold then your toes and feet are going to pay for it - go get another warm clean pair and put them on.
History is everything: If you've anything like my arches you'll need to remember to sit down and undo and put each shoe on one at a time. No longer like the old days pointing your toes all-together to quickly slip your socked feet into your steelcap boots before stepping into the forest or quarry, for now you are reminded of the immense muscle pain from those days clambering over bolders, logs and stumps, forever changing your footing to accomodate the best grip making it up the side of the hill, or back down without slipping with all your days tools. Working at all the many strange angles on slopes for hours on end would definately have been a major part to my individual damages over those years. These are your body's very painful memories, be kind to yourself. Later on lather-up in the shower and give them a soft massage. Sometimes even try a little olive oil or just skin moisturizer, never keep hard foot skin.
BURNOUT: These days my personal moto is: "I am never going to be better than the best I can try to be each day" But these words have come a long long time after everything beginning, happening, ending, and the subsequent fixing and huge changes in this guys life. Many folks are burning out in some way every other day somewhere in the world. And each one is unique, not easily realized, and hard to stop from continuing, let alone finding help for. By appreciating we humans can only fill our minds with a limited number of tasks and physicaly perform for every other person around us we may understand the signs that will tell us not just to slow down, but when to completely leave the entire arena we are currently working within. Only then can any of us begin healing, and very gradualy begin thinking for singular tasks again. It cannot be rushed, it won't let you force it, so be patient with your recovery. Anger and frustration will thwart yourself faster than the mind can know. Very slow, and steady, will help you the most.
PERSONALY: One of my greatest hopes is that all people come to know all natural medicines and how they can help in the living and working world, specific ailments that solve health in the present. For daily pain I very carefully use a gloved dot of tiger balm upon a muscle pain point, or emulgel upon hot pain.
Any time you sit in a cold chair - go fill yourself a hot water bottle, placing it behind your lower back !
Doesn't matter about the rubber smell people looking or anything else, go and do it !
You want to get better ? Then other people don't matter for this one !
( https://www.spine-health.com/pain-causes-and-treatments-a-z )
YOURSELF
Know thy self, something i've spoken for decades along with others to show another way.It means this: Appreciate your own body's natural disposition. That right there probably sounds far worse than it really actually is, but for just as long modern medicine has been mistakenly linking only your personality disposition to the former which is not an accurate account or sum total of your bones and soft tissues, it's simply too easy. Instead realise the body has all it's own various resting positions and no two are the same. Standing loose, sitting in a chair, relaxed on a sofa, all pushing into and relaxing in all it's differing places and ways, the mind perfectly knowing how to leave it half ready to get back up to make a cup of tea or simply make readjustments over the longer time due to pressure on some body points wearing in just a little too hard as discomfort causes reangled bones into softer positions. It's only after we know how we are in our myriad self regulations from one moment and position to the next that we can even begin to include how what we take away from our each day can reflect how our base selves when mind is restful to possible stressed sitting that leads us on to easily aquired aches. Take sleeping for example, when we put our head on the pillow our body follows, and we actually keep a relative position, a basic levitating upon pressure points until our deepest sleep appears, the matress fully absorbing us, literally taking the weight off, this is our comfort level, and as we begin hearing and becoming aware hours later we return to our muscles moving us back into a more comfortable range for our given awarenesses of the day coming towards us again. It is just as important to note here that too many over the decades have purposely aquired the desire to read too much into everything in life including this subject. Unless your surface has, or sometimes even in spite of it, has a broken spring under the upholstery, your body can either live with or dramaticaly be affected by it, and this is the range of motion you need to be more concerned with daily on your bones and connective muscles and tissue, your mental state only comes into the negative when you force yourself to literally plonk yourself down in any old way without caring, or straining against that chair and world in tandem soley based on allowing oneself to be carried by stress of the day only, showing yourself the freedom to both limit and ease-up provides longevity. Care for your longest existence, mindfully. Living well by looking after things for when you become much older. Life is, on the balance of every moment, much simpler than some would have you believe. It's as if someone needs to say, rest your body, but avoid not sinking in or over pressing it down, in that don't be so absolutely conscious of your every micro angle that you never allow your body to rest as it needs, and avoid making yourself strain against a soft chair or bed as to never fully let your weight be carried for you in order to get that rest. And so it is with walking and sitting and driving through our day, don't force it and it won't be a pain, likewise don't let yourself sink into the upholstery so as to put a balljoint out, so to speak. A view to full balance, without known stressors taking command of your body shape when trying to rest. Each one of us needs to settle on what our automatic settings are best for us, and let it happen forever of it's own. Our selves just keeping a quiet overall lookout that we don't get back to pain. Forget clinical posture, work with your body daily.
EXERCISE
Chores around the home help keep your digestion moving and turning to bolus for output, but not all illnesses have a means to an end, and some pains are cannot be released easily. Avoid the ugly tension behind your serious pain by doing some type of brief and careful exercise to ease even one symptom. Use it sparingly and at the right types of moments through life so as not to exacerbate or compound that existing pain, no differently from chosing the correct hot or cold topical on sore muscles. Never make it worse. Some people can only handle just five minutes on an exercise bike, or five minutes with dumb bells. Easy lite relief only.And if you happen to live among misunderstanding people or welfare regimes, then care for yourself more quietly !
You are doing nothing more than caring for your own body every painful day, while they target people !
They want you to go to work under any kind of painful duress, keep your mind at peace !
Every single one of us has the absolute right to defend our lives !
SPECIFIC
Older thinking would have us all believe our bodies can take any old battering and survive over the many years. Necks are perhaps the number one hassle in life. Whatever you do, or people offer, just never seems to be right or enough to get rid of the pain. The following technique is something I have worked on for many years, and definately gives me very good results personaly. Use the following in the lead up to your neck pain crisis...
From the very moment you go to get up out of your bed in the morning, or stand up from changing the oil filter under the car, or coming back down a ladder and you feel an almighty pain beginning to appear at the back or sides of your neck start keeping tabs on it in case it gets completely out of control later on in the day. People absolutely do end up a crying mess lying on their bed in massive pain! You can help stop that from happening to you!
Before beginning let only your head tell you what to do, tell your body to switch off, that's the part you are healing. No more body language for the day. Start running your shower and lay some warm fresh clothes out on the bed. For winter days, perhaps put a heater on low for when you come back to dress. Go and take a single normal (over the counter) standard pain relief tablet, nothing more. Relax your thinking - Think feeling better.
Run the shower luke warm upto body temperature at first. You want to check where your pain is at first. Hot or Cold needed? Feel, appreciate and then heal your pain. This is just for today and tommorrow. Have some mild soap handy and very lightly massage the area. Turn the heat up a little more. Use a light circular motion with your fingertips and whole hand and slightly more pressure. Turn the heat up just little more again and let the area be bathed fully.
If you are already in massive pain, just getting in and letting the water touch your neck will feel painful, stay with it.
A good self testing point is this: If you are in pain but the hot water tickles - you only have half the terrible pain you think you have. If that same hot water causes pain over the first few minutes then you realy do have serious pain. Either way continue with your remedy, but for a shorter or longer time respectively. Judge this timespan for yourself. Know and hold this knowledge for the next time, your accumulated information will guide and help you the most in future.
Remember: Neck pain can come on or be exacerbated by both poor vertebra and muscle activity when doing things.
Throw your days' plans out the window, this therapy is a half hour experience. While 'spot warming' stand up straight in the shower, but not rigid, vertical but loosen your body, lightly hold onto a shower rail as a guide and for support. Let your self healing desire gather about your mind and spirit. Closing your eyes is a good way to blank out external input, and hearing the flowing water is good for your senses. Mostly keep your neck straight, unless briefly removing a crick.
Don't just fall into a mull or become sleepy, remember to adjust the temperature as you help yourself, this is a therapy.
Myself and everyone I have ever known completely misunderstands or disbelieves the effect the weight of our small but heavy head (bone and organs) can have on daily life. Never lean our head (or spine) over to pick up the soap, shampoo, foot pumice, back brush, face cloth or anything else. The weight of our head in the wrong position is one of the main things that got us into this trouble in the first place, avoid making it worse. Use your knees (and torso) to lower yourself to gather those items, and then stand verticaly all the way back up until your body is tall and straight.
If you feel a crick in your neck while standing there, simply unlock it by slowely adjusting your neck to a new position.
The idea is to relieve the muscles of any inflammation by letting warmth spread outwards from the specific area, sharing the inflammation over a wider area and giving better blood flow around the muscles and skin generaly. Including all the small spots around or between trigger points, the ones that may even tickle, this is part of resolving all of the pain as one. Over time it may perhaps feel numb to the touch but the effect is exactly what is required. It is this very feeling you will need to maintain once you leave the shower room. Warm and relaxed - Not cold and hard all over again.
Carry a new view about posture even here, simply walk out of your shower, dashing for the towel undoes your wellbeing.
Upto half an hour is a good amount of time for the pores of your skin to become soaked and underlying muscles to relax. Any longer will not likely offer your body more help. As you come to finish this initial healing time, think about how you will go about reaching out to grab the towel, how you will move your limbs to walk out onto the floor, carefully, relaxed and fluidly as to not re-introduce pain. How you go about the rest of your day will show if you've done it right, never let the impulsive part of your thinking rule you, do better for yourself.
After drying, use a hair drier to ensure cold damp hair does'nt restart your neck pain, it also helps dry the skin for when you put a topical cream on. Maintain warmth around you for at least the next hour. Leave your stereo or audio player switched off, peace and quiet is one of our humans' greatest healers of all time. That also means: don't answer the phone, or the door, or play with your pet, or open high up windows, lifting something off the floor, nothing!
The entire back of your neck will begin cooling so you need to choose the most appropriate topical for your particular neck situation. Whatever you purchase for this - ensure that it is the genuine product. Use a cool naturaly produced cream on fresh skin just out of the shower. Similarly only use a hot rub on day old skin where you've been moving about and getting things done. The most effective cream is one that relieves and nourishes your muscles.
Move slowely about for the rest of the day. Don't trigger more pain by lifting things. If you came by this entire painful experience from a car crash or fall or some idiot hitting you intentionaly and you've been given a brace - then wear it. There are absolutely no heroes or heroines in the story of life. Things happen to us and we have to see ourselves right again until our body is at peace from pain - No matter what that takes. We have no time for pretending otherwise.
A poorer life doesn't start and stop with just your neck, every time we move our spine - those same paraspinal muscles pull down upon our neck muscles that are further up and over the top of our scalp as well. Buy yourself a long handled back brush and look after your spine so you can lead as normal type life as possible. A happy back is a happy life, we just don't know this until something goes wrong. Only then we wonder what we can do for something we can't see.
After an hour or two and you feel like you can get back into doing a few things, or performing some light effort then do so slowely and carefully. The moment you get excited about any subject the more tense your body will become as it gets ready for activity. If you are still in pain at this point in time consider how long ago you had that first relief, how much food you have had and what strength the next pain relief is - and how long the expected duration will be.
If it has become time for a meal eat foods that are blander than if you were to become busy soon. Foods like honey that gets us immediatly active is not a great idea. You want to be doing everything to let your body be relaxed and your mind at peace. That really does mean everything - don't worry about some chore that needs doing, or some neighbour being an apparent trouble maker - leave it all behind and just rest. It's not worth your soul to worry always.
The Medical Highway. Watch your weight as you travel your long term health path. Never let yourself become plump, nor too thin either. Simply because you may be afraid to eat. It's not worth far bigger pain. Don't reach the end of your journey before you need to. Have and hold deeper insights and self respect.
Another pointer is to have just even one hand rail installed in your shower at hip height. They normaly come as a 1m by 30mm round wood pole with two cone shaped wall mounts, don't use anything that cannot bear most of your weight like silly stick-on types. Use the hand rail to loosely put your hand around for balance while doing the shower repair above, hold tight only if you begin to wander. Use it as a guide and change hands as you turn your spine under the water. Keep hold until your eyes open again.
Some people find chewing (sugarfree) gum slowely after this time helpfull to gently exercise the jaw and neck muscles, just be aware it may also annoy the muscles that flow up over the back of the skull and help restart your original pain.
This is a serious way of life for many. Go back in a few days time and do all this remedy again if needed.
Make time to look after all of your body with the same respect. Know every therapy for your life.
The warmth from a shower over the spine also helps awaken sleepy internal organs.
The art of being and maintaining yourself as a happy human is paramount.
Small Imaging Viewer: http://www.microdicom.com/
Remember: We have to go through some body discomfort through life, but it should never develop into intolerable pain.
SUPPORTS
Never underestimate best possible everyday living . . .
The good normal version any of us are given or buy stays with us as the best experience forever . . .
Whether you need a hand/wrist support, wheelchair, sling for your arm, torso, neck or other support make sure what you buy is suitable - not every product has the same spec's as the best ones available for the price. Other times you may find the quality of the same as you've bought before has been lowered in its design - ask the pharmacy to open the box so you can at least visualy see it before handing over the dollars - if it's somehow less quality then shop elsewhere !
For example you may need to wear a brace when driving, it not only provides warmth but directional stability while discs / vertebra / cartilage slowely build back or mend, or for longer if you have a chronic degenerative disease happening for your remaining lifetime. The image below highlights the issue of quality, they are both for adult but only the lower version fits correctly. The upper is not long enough to attach around the back of the neck, making it a waste of your money !
Shortcut taking is a real issue in our modern age of manufacturers raw materials costs = limited product !
Check the length and other characteristics before you walk away !
Buy the better length, not all necks are skinny !
Overall muscle tone, or inflamation !
...upper 30mm short !
( pointer : if you are stuck with owning one, have a handy sewing friend add a short length of strong breathable material to one end, remember neck braces are about supporting under the front and sides of your neck, mainly ).
( note : avoid adding pressure to back of neck bones by adding it to the outer surface of brace fabric only ).
TECHNIQUES
Awaking each morning for necks. Compounded pain makes for a very bad day. Raising your head off the pillow means putting immediate strain on your neck bones and soft tissue from a completely relaxed position to full on effort as its very first activity for the day. Give it a better pain-free chance for the day ahead by doing the following: Use your left arm as a type of cantelever. If you are coming too with your Head Right Side on the Pillow, lift your Left Arm up as to put your Hand on your Head, but move it further past the center of your head over to the right slightly, and all in one movement use your right arm to push up from the matress and legs slid out over the side of the bed like a pendulum and carry the weight of your skull equaly as you sit up on the edge of the bed. Rather than allowing your head to droop to the right while sitting up and suddenly experiencing pain. This ensures fewer or no pain signals to start the day or for your pain map to deal with. Now slowely stand up and walk off to where you need to go, bathroom wherever but walk your first step slowely to let your spine align for the day. Use the opposite limbs for left laying awakening. Easy.
Part of managing your low spine pain is sitting having breakfast while leaning back on a hot water bottle, we do this in part to prepare those muscles for the day (from a warm not cold start), and help with existing pain. Normaly we all just go and stick our rubber bottle under the hot tap and feel it's all fine, but real chronic pain can also be aggravated by too much heat. The answer is filling it to the temperature and time we need it, and this depends on both the type of seat we'll be sitting into (a closed back or open airy seat) and how long we'll be there until we either shift away, has given us the required help, becomes colder than us, or no longer needed presently. So for a quick sit down a 2/3rds full will help out in the open, and a 1/4er full will be of most use in a warm surrounding chair, and for longer as your body helps keep the lasting warmth, better !
Medicines. If you have just been having a few days of terrible pain and have final gone for the pain relief, tell yourself this first: I must not do any activity even though the relief makes me feel better and can do anything now. Quite literally you need to stop yourself from getting up and using all of the same muscles and tissues and bones until you have resolved the underlying problems. That will possibly be over the next day or so. Healing: Stay Still And Rest.
It's very boring - but just do it !
BOOKS
Right from the start I guarantee you that ' false, positive belief ' books are more damaging over time. Buy a book of practicalities instead, not one that fantasizes about the brain and its workings to fool you into a different reality. They are written by people with a go-to-work-at-any-price agenda. Trust me on this one, I have been through all that a few times over. They are a waste of money, buy the real thing. One of the few worthwhile books I recommend is Controlling Chronic Pain by Connie Peck (fontana/collins) 1985, including Mastering Pain by Richard Sternbach (ballantine books) 1987, and certainly Your Painful Neck and Back by J. Fisk (century hutchinson) 1987. Lastly, go to the library or online, and learn about your spine and the way nerves travel to and from your various organs, veins and arteries too, the organs themselves, basicaly give yourself a background knowledge on how your whole body works. You are better for knowing these things before the far more intricate issues come into your life.
REALITIES
A glass of water before starting your day . . .
All kinds of people carry all types of views about all types of things, including the unwell. If you are unfortunate to continue on with chronic pain through life you will inevitably already know about those moments of pain while outdoors or at the local shops. However we must be understanding towards other folks who may misunderstand that blank look that comes over us as we experience some form of our gripping pain. The fact we sometimes cannot speak let alone walk on and away seems odd for the able bodied. Look on past them or away if possible for the duration. Once the moment passes, and if they are still looking or even staring, tell them by way of a simple explanation it was just your pain. Let it be, we know a part of us they do not. It would be unfair for us to believe they know. They simply do not.
It is much like how a caring owner who works from home, or the quiet person who has a serious condition feels when they hear a sudden sharp loud noise outside their place on the street. It is enough to make them jump up out of bed, or their tv chair, or raise the reading on their heart monitor. And it most certainly can trigger further unwanted anxiety and stress during a critical medical event during the afternoon or night. It is something often unrecognized by those who live a fuller lifestyle. Loud audio does shake those of us who are busy listening to our bodies for health and study sake. It would be lovely if it was a perfect world and all others travelled through our streets peacefully. Our lives deserve respect.
These days people wish to push fellow people further and faster into so called ' modern life ' albeit for lost medical arts. The rest just wish to turn a blind eye or get a definitive meaning first before attacking someone for no good reason. That is not life friends, your only Primary Job in LIFE is to preserve your Body, WellBeing, and Spirit. Know all of your body inside and out every living day. Make things easier for your body. The right-wing thinkers in our world wish to edit down everything to one liners. Others wish to remove labels that are actualy helpful in modern times.
Patients need to ride out each and every pain as it occurs. People and Doctors don't keep up with the extent of where pain is for the Person. Even if they were given the best highest dose of relief and told they can go off and do anything they like they will have still used even more of say - their neck bones and soft tissue for that duration. The body needs time to heal. They will be in two or three times the impossible pain they were in before. After that special relief has worn off they will be in absolute agony. And that is simply not a sustainable way of life day after day.
Just as with keeping an eye on all the obvious signs, never overlook the hidden side of pain care either. Avoiding pain means buying items like an Anti-Static Key-Chain to avoid jolting your neck. Foods too can play their part, for daytime stress try a finely grated ginger (diffuser) and honey tea can help. A little avocado for your first bite at lunch time. Then just a little fresh red onion with dinner can go a long way for some folks spine pain the next day, likewise eating a half teaspoon of rindless apricot jam works well for some folks for a better sleep, along with your nightly cup of tea.
Excema? Yes, excema that horrible little word, except this one is somewhere in between. If you wear eyewear and often sit quietly reading you'll most likely know that those little moving moisture air currents fogging the underedge of your glasses are likely causing a skin problem too. Simple bacteria are left between your nose and cheeks and can cause a broken skin irritation, which of course we rub with our fingertip...which can develop into a shallow blood spot. Go see your doctor and ask for some type of antibacterial cream/ointment, don't just go to the chemist for this one.
Come to think of it, I think there used to be a company somewhere that sold short thin clip-on under-frame guards?
EMERGENCY
9 to 5 means sleep when sick, not just work hours.
Write yourself an On Watch List and pin it to the wall. Somewhere like your own room. Get yourself a piece of copier or typing paper and a black marker. Write Emergency List at the top. Now put your first dash on the left with the name of your first Emergency Medicine. Write each one down the side with the name and quantity. Write each one as you would need to take given a normal emergency situation. Write clearly and relevant to your ailment. At the bottom write your local Ambulance or Emergency telephone number. Look at this list if you think something is beginning.
It doesn't have to just be medicines. It can be things you need to physicaly do for yourself too . . .
Quietly listen to your body . . . be sensible . . .
CHRISTMAS
Keep enough cash for christmas time. If you get a cold or virus you'll need to attend a different Doctor over the xmas period. Not being one of their usual patients means paying more for an urgent visit. Keep enough money to cover two to three visits, and for purchasing medicines from their pharmacy too. Including a taxi if you cannot drive presently. You may need to save upto three hundred dollars to see you through before your doctor reopens again.
JOURNEY
The long haul is when you know something about your own health (or anything actualy) that no one else does, but in fact often pretend to whenever they see you. If you have got to this place in the page you have most likely had one or two major operations. You have gone from being hit fairly hard to becoming super tired upon the next, and so on. If you have been diagnosed with serious, long term disease, or terminal illness you need to have a bigger than life view of surviving and suceeding each and every next time that it comes at you. Be a strong survivor when it arrives, and enjoy life as much as you absolutely like between times. Be organised and know the things you require.
SELFCARE
Having a stay in hospital is no different from living at home. You still need to keep up your personal hygiene if you don't want health issues later on that will cost you money, like the dentist because you didn't brush. Don't forget to take your selfcare items along whenever you travel to hospital. Face cloth, toothbrush and paste (including your usual floss and gargle), soap and towel, shaver and foam, shampoo, own particular toilet paper if softer needed, light warm blanket, walking stick, normal walking shoes, special clothing, and of course all your usual medicines too. Remember to ask the Nurse if you can shower just yet, you don't want your surgical tape or stitches to come undone.
DOWNLOAD
Every night we go to sleep, our body tries its very best to heal, what has been thrown at it today. A good work and life balance is important if we are all to survive our lifetimes as happy people. We can help those closest to us know where we are by leaving a simple note if they turn up at home for us. Or design your own one. Carry your needs with you, buy a jacket with deep pockets, or just a shoulder bag to carry your medical needs with you. Clean garments and medicines for those difficult moments. It should be of no other persons interest if you carry a bag or not. Let them assume, they don't know your health. See ' Daily Things ' inside Home Extras 10Mb ( ZIP ) download.
EXPERIENCE
Funny word, experience. But it means all that we have lived through and gained knowledge from. Our accumulated justification of how we feel this moment today and every other month and year. The making of me, or you comes from multiple experiences. Over a lifetime of knowing hereditary or instilled physical and psychological frailties. What makes us is far larger than what is written on medical textbooks. Not forgetting all our demeanor, or our spirit faiths either. What we happen upon, come by in life, becomes our eventual solid path till the end of our time. If you do not invest equaly your health and medicine and soul you will have nothing to carry you when times are hardest. Appreciating ourselves has never been more important in a world growing colder within while temperatures soar. And if only others became aware sooner of anothers plight I am sure that we as an entire population would care with a finer temperament than we have accomplished through all preceeding centuries. Growing our world means more than feeding people.
Difficulty with hard pain can be like this, when i go for a ct scan to check for damage the contrast knocks me immediatly, and having only a wheelchair without any headrest simply allows my head to topple over causing my neck to get into ugly pain again, even my brace cannot help stop that one. So you think, Next time i'll ask for a raised bed just to travel through departments. But you never actually remember, besides you don't want to be a pain . . .
The next morning my neck is still raw from it. Upto seventy percent of your pain can leave you overnight, but often another twenty will make it's way back the next morning from the moment you begin moving again, not forgetting the standard everpresent chronic nature of the pain can be a little or alot, the type of pain that makes your every living day very different from everyone elses. Constant. And you never get used to it.
This is just one of the many small ways in which the two or three things can come to aggravate life.
Combination pain lasts for days longer than perhaps people realize.
QUESTIONS
Why do we lose contact with a part of ourselves just when we need to know how some organ or part is feeling? To get a better picture before speaking to our Doctor or ED. Those of us who are already tuned-in to our existing health know well the many pointers and hints, but even we can be unsure of a newer turn of events. Take the intestines for example, most children grow into the world learning how they feel before and after eating and the amount of food is still passing through them while being processed. Other children are so full of life that they completely miss all the signals that would help them not feel uncomfortable by being overloaded, or completely empty. For them, asking questions is paramount if they are to get a handle on their workings and guide themselves on how much physical effort they can do, and avoid feeling unwell. There are many such basic questions that need daily answers so we can live, and understanding the many starting signs of your body is the most important.
SEASONS
Winter is a time we can wear cosy clothes, but Summer none of us can escape. Living year round we need to find ways to cool our homes in more economic ways, you could turn the air conditioner on and spend a small fortune over time, or use air flow to your advantage. If you know the sun shines harshly on one side of your house you could open all the windows on the other side. Or you could simply open one on the corner of the shady wall and one down the shaded side. Slight windows ajar give a cooler breeze than wide open which only serves to allow large volumes of very warm air. Don't be fooled by what seems cool moving air. As the sun moves along the length of your home open alternate windows, as the sun heads for the horizon open a few at the opposite end where the sun came up this morning. A window with a tree chops the heat down. Keeping cool can save much discomfort when unwell.
IMPORTANCE
The importance of experience. We all walk talk and surmise life on our feet. Hopefully we get everything right. This is my medical page of care, but everything costs your life both time and money. There are two sides to every reality. To rest in a hospital setting means a drip in your arm while being monitored for two to three days lying in a bed with absolutely nothing to do. Your normal daily life is left behind. You cannot complete the things you need to survive in the wider senses. You miss out on important family and local information. You cannot move your body to perhaps say, move things through your intestines or limbs by doing simple chores. Once you walk or drive away from your home your life is in many others hands and not your own. If it's not urgent, be sure of exactly what you want to accomplish for your health over the following days, or need to do right now. First.
NIGHTS
Sleep when you can. There are no hero's in this lifetime, just names in a phone directory. Never lie there in pain, recognise it and know how you can help yourself. Then just slowely get up and tread quietly to the kitchen. Take your 2am (or whenever) relief with a full cup of tea, not just a sip of water, avoid stomach aches. Nothing's worse than a tablet that just sits in your tummy doing its own thing. Go and sit in your easy chair and have your tea relaxed as possible. Take a small hotwater bottle with you, put a small sidelamp on. Read a book, not some lively television. Warm your bed to get the most hours sleep you can. If you are at home it doesn't matter when you eventualy awake. Have your normal breakfast and continue life. Do this each time as needed, make it your own plan.
For folks who need to visit the little room or make a cuppa during the night, purchase a small torch that has a folding hook on the rear. Unfold and hook onto your pyjama collar. Some are quite bright but can be angled downwards so as to not blind anyone else in the dark. It basicaly allows both hands to be free if you need to do something medical for yourself. Most handiest item ever.
Ensure you keep enough of your specific medical supplies.
EATING
Arriving home from any kind of surgery can leave you wondering what to eat. Some visits with 'nil by mouth' leaves you empty and hungry by the time you arrive home. No differently from walking through a dessert you need to introduce new food back into your stomach and intestine slowely and carefully. Potatoes and carrots are vedgetables we've all eaten, but carrots have more difficult fibre while peeled potatoes offer you a calmer digestion and kinder output the next day. If you wish to load your intestines potatoes, eggs, bread, pasta, fish, chicken and so on will all do that for you, they are relatively stable foods, it's all in the slow cooking. However a balanced diet means knowing that cabbage, brocolli, beans, peas and so on break down inside you in a different way, these are gas producing foods which can cause bloating in some people, and bloating can cause far more pain than folks may know. Simpler cereals such as wheatbix and ricies with plenty of milk can be a kinder start to the day than say bacon and eggs, or sausages and baked beans at lunchtime. Back to the other end of the scale, foods like courgette or capsicum or yoghurt are good cleaners individualy, eat a little as part of your entire diet. Cooked meats tend to travel through your system easier than fresh meats. Fun foods like icecream or chocolate may not necassarily work well for you sometimes. Foods and body relationships are a giant subject, for example some people have peanut butter difficulties, these are just a few basics that many are not aware of their impact. For me personaly I will once in a while prepare vedgies as chips, boil them timed for their thin shapes and then lightly fry them off with a little cooked meat on the side, but no rice or sauces. Other times I will eat lightly a little of all the typicals, other times I will fast for a day with just liquids. Yet other times requires simply steamed and skinned tomatoes on crustless bread. After leaving surgery dedicate your mindspace to eating suitably for your immediate conditions. We would hope that deciding our eating not be an effort before every mealtime, nor dealing with difficult output later on. Drink plenty of water!
DINNER
IF your stomach has become over-extended or in other words bloated from a known upper left side s/i stricture, then after a large meal you need to rest on your back or right side, whichever you feel is most helpful or an amount of time each way, so the very slowely digesting food and liquid has a better and easier path to even-out throughout the rest of your internal abdomen via intestines. Even as little as half to an hour can make a difference in reducing your sometimes overwhelming sick feeling that you may believe will end with throwing up. If that is the case always simply allow that to happen, but never force or induce it to happen unnaturaly. By laying there awake with abdominal sounds it will be processing your fluids from your latest main meal, simply go to the toilet as the bladder fills which will further relieve discomfort above. As the evening and night grows longer perhaps try releasing faecal output, every little bit will help relieve your discomfort. And remember the only fluids you should ever drink now is to help wash any medicines down with, otherwise a dry night and into the early hours. If you feel everything will be safe, only then you can let yourself fall asleep, a few hours after waiting patiently. Move yourself slowely. Never be sick while asleep!
EVERYTHING
So here now, for those who are experienced with life are a number of all other things to contemplate for your own medical space. Little lessons along the way. So you've just come out of a lovely shower. Put a T on before you start cooking at the stove or cooker, that nice fresh scar down the front will thank you. Protect it from raw heat. And that's before we even get to fried splatter. Speaking of which there are scar healing friendly oils you can buy from your pharmacy, running a line of oil down the stichline with your fingertip acts like a very thin bandage that promotes underlying skin refreshing growth, before you know it your scar has turned to a much thinner line. Some scars can be a little heavy duty to bear with, get yourself a simple waist belt if you perform lifting chores each day until it heals over. Getting to a happier place means thinking about your own particular operation or situation. If your clothing is a little too tight around that scar then wear looser clothing until you mend, learn sewing and let the waistband relax over your abs. Seeing life through to its proper moment requires a bigger self interest in overseeing yourself surviving. Idea is to supercede your own life expectancy by knowing and remembering all you need to do for any and all your health conditions including anything new that comes along. You want to be confident that you can succeed in looking after all of yourself and all things related to your ongoing life matters. Be a happy careful person in life.Next... So it's two three four or five in the morning? Awakening to very strong pain in the early morning hours means your nightly relief is wearing off. It's often better to head straight into breakfast mode than wait until six or seven when you do the usual wash and dress for the day ahead. Leave your night clothes on and head for the kitchen. Make all of your normal breakfast and either have a specifc pain relief or just all of your normal medications very early. Wasting time with other things means a delay in getting relief into you. Do it now, walking about tearful with pain is not fun, and then get those other things sorted at a slower pace. Remember that pain has woken you from much needed sleep that you cannot get back. Your body now needs to be up and about so the medications make their way through and you feel the relief effects, taking it very slowely afterwards can work as light sleeping in this case if you go to bed earlier that night. Then get your rhythm back the following day. Keep this in mind for future times.
Lastly... If you are one of those people who can gently roll your abdominal muscles then you'll also be aware they also help you go to the toilet by helping release difficult waste a little easier. We all have the ability but just need to show ourselves how slowely pulling in the lower and letting out the upper and back again in a slow rhythm while directing the action towards your lower abdomen we can carefully help a firm output release with less pain or discomfort for our crohn's. Go slowely, you don't want to cause a perforation to occur if you've had bigger issues lately..
If you sense your pain is giving your heart trouble, take a reading with your monitor, keep a notebook for readings.
There are often many such things to remember, it is a whole different world we live.
Right Click - Save As: Personal Blood Pressure Monitor Readings (HTA)
FRONTLINE
This is how it hits . . .
I was heading along to my normal doctors appointment and my disease began kicking at me earlier on since about four am. I was a little early and thought about turning back to grab another medicine, but I was virtualy at the surgery by then. Problem was I was starting to strain hard with the pain, long story short, some heavy duty relief and specialist medicine and mega-resting for the next forty eight hours, including extremely light diet. Got through that night without an ambulance to hospital, and began a very similar regime the next morning after sleeping, yay! But as soon as I began trying to lift or do anything one of my poorer spine discs and my whole chest let out a humongous helppp! trying to lift something. It very quickly came home to me that the massive strain had left a serious kicker behind for me to deal with. The main event was over but this surplus pain was almost as bad as the other had been. So nothing ! All day nothing ! Again no activity ! Very serious pain !!! Home again, time for some remedies, slow down . . .
Lessons from the front line, relax as much as you can when you are under severe pain.
Breath a little slower when you get to this point too, not just then.
I don't mind the furry head when massive is hardest.These you want the fewest of ever.
Be patient with your body.
Quiet saves you.
PEACE
Little bits of peace...The following is based on you having normal abdominal flow lately...
This is an area where i'll add helpful pointers i may have already worked out, or am going through...
1) Recently i went through a complete dryness of my small intestines and colon. This is fairly rare but it sure does give you an awful deadly feeling inside if you've just woken up out of bed. This is nothing like pain from a single stricture blocking a particular loop, those things we know what to do for over the days. No, this one is an accumulation of recently eating the types of foods that happen to run out of moisture early on in their digestion process, giving you a total dry out! When you stand and go to walk you feel like one solid object and every turn you make with your torso is felt. You may still be able to go, but it'll thicker. The idea is to get a range of small wet spoonful meals like yoghurt going, wet things like jelly (small i/cream only), cups of sweet tea, a nice yellowy jar of mustard pickle (usualy chunky but blend finer for toast) and it's also a stomach settler, lightly boiled courgette, cordial during the day, a little fine wet coleslaw (very slightly peppery dressing), poached tomatoes pulp (salted on halves on oiled buttered pan with olive oil on skins you pinch off), a teaspoon of cream cheese, a swallowed loosener up top, a bullet in the rear, only loose milky cereals breakfast lunch dinner, the simple sugars that only cooled watermelon can offer your guts, laying flat on and off during the day, lite pressing massage over whole abdomen, one teaspoon of apricot jam with your bedtime milky cup of tea, and personally conscientious hope that everything keeps moving through, while trying to go again, and yes the warm shower trick on the spine nerves as further smoothing signals incentive for your body to go, doesn't matter how loose output initially becomes, save yourself, it absolutely does all help!
Simply get wet foods going that you know will last the moisture distance onto the walls of your intestines !
IF this has not resolved either overnight, or over two days you will need to ring your doctor !
Your initial symptoms will be as above plus dry mouth, tongue.
A whole feeling of dryness throughout.
Remain calm, meds !
Be well crohns !
2) Sharp groin pain. A pointer for those trying to get past a normal Stricture blockage, on your left lower abdo' to the ileum loop, or on the way down through the descending colon to the rear, it can feel like an intermittent sharp pain at that time. Personaly i have found it can be a 'richness' of waste material biting at the nerves in your intestine wall and not always an alarm to something more. You will already know what soft or harsh foods and drinks you have eaten that later combine and what to likely expect for your toiletry. If you are unsure call your doctor and describe what you are feeling there. It may be that an x-ray could help determine if there's been any spillage by way of a s/i break.
Sit quietly and feel / hear your body for toiletry signals...
If sitting place your left leg out to give it all room...
If only rich bolus, releasing will ease symptoms.
Don't leave it too long if you're worried !
Any perforation is serious !
Phone !
( Note: if ONLY toiletry, an anti-inflamatory suppository will help calm remaining discomfort afterwards )
3) Another thing that can help in the lead-up to a likely abdo' issue is taking your dinner an hour ealier than usual, say 4pm rather than 5, with an added idea that helps me, is eating it just as normal but at the bench instead. The two things go together quite well, standing means there's a clear run to your stomach than sitting, you're not slightly folded over. And earlier means you can move about for the end of your day with just a few chores or things before sitting for the evening, it literally helps your dinner go down, simply eat at the same pace as you always do, and smaller meals !
4) I really loath in-body compounding issues. One such item that exists for me, and you may have one of your own too, is how if i eat the same size dinner but with one or two unsuspected dry or course foods, can give way to problems the next day, outside of usual crohn's awareness. Case in point, for me there is an abdominal area that shares around three differing but close quarter severe pain to be confusing to figure and solve when something is already underway. In the above scenario, this is how it played out yet again just recently, but as you will see there's no easy way to pre-empt. I had such a meal recently, following i had single long dry output, relief i first thought yay, then milky wheatbix breakfast yum, then off to sit and take medicines but half an hour later absolutely 11/10 excruciating pain and immediate requirement to knock it back with heavier relief. Please No ! - Well there's lots of time useage in waiting in a crohns life, so i thought it through, had i pushed too hard to pull open an olde side of sternum tear ( from hitting the steering wheel when someone hit me back in 2005 and again in 2007) or was it just the ever rawness of that large dryness moving past near my usual upper stricture where the s/i walls have long since become supersensitive, or yet still that stricture had once again blown up? As i look down over the area six inches from my chin into just below the surface a number of nerves come to radiate in very close vicinity to each other, sometimes making suitable diagnosis difficult in the moment. On the other hand there's nothing to say two or all three things didn't actualy take off on me, it does happen. But experience shows through, you get a particular flavour emanating up when these things happen, including reading how resting back flat on the bed tells you the story too. In this case i was happy to realise my tear needed to heal back into it's normal shape form and thus less pain would come, secondly by addressing the stomach directly with medicine and antacid to bring the pain closer to controlled, and then the actual pain relief finishing the task, i was able to ascertain about a third the way in that there was no stricture issue there today, i had indeed by deduction strained my sternum and this pre-existing tear was not happy about that, and the stomach (given that i feel my crohns in most of the main pipe) had two main spots of acute pain within. From experience i did the limited but sufficient things and resting to get by. A ton of quick accurate thinking while in serious pain pushes your boundaries but can be done. I still remember the first few times years before, i could only just work it out in time to do anything constructive outside of just morphine !!! Now i'm sitting here typing it up, you might imagine nothing even happened over the weekend seeing how i am now, however i can assure you the memory is very fresh. Terrible level of pain. This is why it's an absolute requirement to know all your medicines, have them on hand already, and make the best choices as the event unfolds in your immediate life today. Be fully sure !!! That just leaves aftercare, eating only a little, walking slowely with no bending to not agitate the sternum or whatever your old injury, these are the biggest times, shaking with pain and looking after yourself is no fun, fully calm balance foremost.
5) Night time: Any upper small intestine stricture near the stomach can be the most difficult to deal with because your food and liquids are still sitting waiting to go through. You cannot eat any further and it has become a waiting game for it to clear. Likewise you cannot drink very much liquid because it very seriously adds to the bloating already going on. IF you've been on spew watch for hours on end because of such a blockage, but you are now exhausted and seriously need to get some sleep, you don't want to be 'reaching' while asleep because any wet material coming up through your throat might block your airways. (It's the exact reason any of us are required to fast before major surgery in hospital.) So check which medicines you would normaly be taking and just this one time leave out any heavy sedative types so that you remain awake or aware enough to put your mouth over the side of the bed into a bucket. Otherwise take your pain relief if normaly done so, along with usual bedtime med's with as little water to ensure you don't throw up while asleep. You could also try sleeping in angled recliner chair to keep your head up, or raised upper bed if you have one. You can always leave a main or side light on so you can see where to walk if things start happening. This disease doesn't care what time it is. Do NOT choke to death while asleep - Keep safe with your crohns !!! Phone for an ambulance if you need help !!!
Notes: The art of relieving the stomach is all in your preparation, such as being one hundred percent sure you need to, including both protecting your knees with a soft carpet mat and having something to hold onto at the wall, placing a single sheet of t/paper to avoid initial splashing, removing any eyewear, sliding your sleeves up, and placing a tickly finger if you need to initiate it on rear of the tongue, patience. And also to remember to take breath's throughout during that time. Resting back when a lot has gone allows you to take a moment to check if you really need to continue. Even a small amount can give some relief while the activity can serve to loosen that stricture area, and letting some food to pass down through more normaly. Aftercare may seem obvious, but: brushing your teeth and a gargle, blowing nose and a drink of milk or antacid all helps removing smell within before trying to rest. Including washing the immediate area upon resting. Take a note of the day and time ! Your sharp hoarse throat will repair over the days.
6) Aftercare: feel out your pain, accurately, whether it's a careful fingertip or you personaly recognising something wrong in your moving, changing, or quiet life. A note for your future self that no one ever says aloud. You can't just take pain relief and think your illness(s) have all gone, you need to give your body whole care, again whether it's slight exercise daily or lasting medicines or particular foods including a refresh in thinking, never give up on self, believe in you because for the most part you can get there, and there's only one of you, and forever onwards !
7) See everything from your body's point of view: Life is busy, be positive about emptying your abdomen, your intestines of waste! Makes you feel lite-er! That's where i think people never really appreciate why a disease exists, it really keeps going on forever, never ending, always with the person, through all of their life's daily and hardest times. After awakening have a glass of water, waiting half an hour before breakfast can help your stomach to reset from dinner the night before, or prepare for next new food coming into it.
8) When you know something is in the way of normality, but you just can't get it out of your mouth: After one of my abdo' operations, i was about two weeks into my hospital stay. And was already on a drip for both cleaning up my blood from the surgery and separately for an in-ward bug that had broken out, particularly as there was a number of us infected. The antibiotic was added into the usuall pain drip, as i was also going through my neck and spine pain from lying stationary on the table for such a long period and plus i had limited other manual care along with me. Over the duration it began building in my system to quite the harshest extent, all of my head cavities with soft tissue began burning more and more with this chemical cleaner, including upset stomach and various arteries hurting too that i literally couldn't keep my mouth from gasping in pain, until one morning at a dead quiet ungodly hour i grabbed the nearest doctor walking through a corridor and called out for help. He eventually came back out of the nursing station and we spoke and he asked what it was i wanted him to do for me. But the real story is actually right here, all i could come out with is to end that drip now before it became impossible for me to cope with. That all he could come up with was, no - but he could have it reduced, tommorrow! Other than that there was nothing, when your head and body is buzzing with such terrible pain you have no voice - you just can't get the emphasis that needs to be urgently heard out of your throat, plus with that specific burning going on also, in the mirror my interior was literally yellow, and the absolute truth is the doctor himself did not volunteer any information or specific physical help during all those dreadful hours of pain, nor afterwards when the drip was turned down minutely, even upon putting in for my desire to leave from extensive discomfort also went unnoticed, i was having difficulty breathing as everything was so sharp internaly by then, that i realised no material help was going to be forthcoming for my condition at all. The moral of this story is simple, for patients and doctors alike reading this, it is specifically important for a doctor called on by a patient to profoundly investigate the symptoms under such circumstances, that a patient cannot be asleep at that time of night for the very real desperation to be seen urgently! That there is a definate source of validity if a medicine is being experienced in this way for so long. That the drip was still very much actively working so harshly in me as i had been dragging the drip along on a pole and was sitting there talking to said doctor at that moment, surely does require a more active doctor! Finding your voice in such a hard moment is impossible! It's a reasonable expectation that medicine comes to the rescue by knowing such extreme's need your own very experience to be available or to find someone who can reduce or lessen the severity! To recognise in a very real manner when any patient cannot speak up properly for themself! That leaving it for hours for some other staff to relieve a worsening outcome is simply not going to be okay. Please know when to speak up and help directly doctor !!!
Every doctor or senior nurse out there, please know something can be far away worse than what appears at face value, a mild sounding complaint, a voiceless or too-quiet person can be going through terrible hell.
Your attention is required immediately !!! Direct symptom peace needed now !!!
( Even upon finaly leaving later in the day with papers and arriving home i was unable to place food in my mouth from the harsh surface of the mouth flesh, water was too sharp and at most only milk was accepted for days. This is my all time worst hospital memory through any of the years visiting there. If YOU can find your way there through the pain within, do ask for help. Simply 'Is there a way to lessen this, doctor?'...would have been my question, if i could've.)
[ And this, nothing will change ever, if you don't highlight that one thing ! ]
[ No matter where or which hospital, speak up as best you can ! ]
[ It helps every other person that comes across the same ! ][ And it helps teach staff that are unaware of a problem ! ]
[ Medicine intensity really can do bodily damage ! ]
[ Do ask the patient further times if unsure ! ]
[ Voiceless can mask massive pain ! ]
9) Learn to help yourself, no matter how cartoon you think anyone else around you may see you! Experience is this: During a separate procedure that may have converted the day into staying for surgery i required to wait in a ward for the CAT to become available, and thinking it wouldn't be all that much of a wait i hadn't brought along a few of the things i always use in normal daily life. So rolling along to that clinic in a wheelchair, having the dye and scan all went perfectly well, until immediately afterwards. The human body can change tone quickly from fine to sickly - fast! And waiting for an orderly to wheel me back to the room just out in the clinic corridor would be where i would learn a valuable lesson. Only a relative moment before i was upright and swept along with such a simple day and hopefully off home. But right at that moment i was completely lost in my massive neck pain from the sickness within, and my neck could no longer remain upright and i had forgotten to bring my neck support along with me, basically because i never thought in the wildest dream that i would need to prop myself up after something so simple! Lesson is nothing medical is ever so simple!!! Always think in a realistic manner on how things can change at any given moment!!!
( It IS up to each of us to prepare self for outcomes unseen in the moment. To maturely be ready always ! ).
( Give yourself insight into how things that affect you daily - moves with you through other parts of life too ! ).
10) Before going through ANY type of therapy or treatment, recognise if whatever it is spoken to be, has actually been affecting you and in what manner?, satisfy this internaly and then along with how medicaly this will help you?, before simply saying yes or no. Be sure with yourself first, everybody !
NB: A brief note for doctors and specialist nurses, some grow up with a sufferer in our home during our childhood, however we are not always privy to all the details. Please introduce Terminology to us as new knowledge.
DOCTOR
Nothing is black and white. More than ever people need to consider how they are, not how they feel. People with chronic health issues require a longer view to care. A good normal doctor often asserts that a medicine they have selected for you will do the required task, often a short term pharmaceutical only. But to be sure is not always to be realistic. Any medicine may not be helpful for a range of reasons. The last thing you need to spend extra money on is to go back and ask for a different type of medicine to resolve an issue. Longer patients feel they need to move on to a better all-round wholeness, informed and with personal experience type doctor. An experienced doctor will ask a chronic illnesses patient if they feel a certain medication with known side effects will work in with existing difficulties. These patients are aware of and live daily with a variety of indicators and finding the best balance or strength of something new needs to be discussed first. Doctors that listen to their patient who manages their own daily regimes and medical hardships always provides the best ongoing advice, and over time gives continued hope in a sometimes hopeless life. Speaking freely with your doctor means everything in your world where multiple issues perhaps exist. Hold all things in balance by helping each other to manage your medicines and long term health always !
A separate issue alongside can also come to exist. That of length of time between doctor visits the patient has not been able to take a medicine that they have difficulties with can be alarming for the medical professional depending on the original severity or perhaps contemplated severity. What may seem high or an upper limit of symptoms may in fact simply be the patients own normal levels. Sometimes less can be more in medicine too as in other areas of life.
Our ongoing lives require considering all things.
FUTURE
Doing your own part . . .
URGENT : Can we have more Patient Pickup ' Car Parking Spaces ' at Hospitals please ? ( 30mins minimum ).
As you become wiser with your own ail, your own body, you need to arrange your own management more smoothly. Taking all the heavy duty medicines relies on eating all the specificaly correct foods pre or post each occasion. Anything else can lead your body into turmoil for days on end. Learn to package all this to take along to hospital too, so your visit there will be kindest. Not all foods may be available for a known momentary symptom, work around it with the next best snack. Ask if certain foods can be delivered per your requirements. This is just one example of getting by in your own future, now read on for general life . . .
People sometimes say the future of healthcare is uncertain. However we do already know what works and what does not. That giving help where needed saves lives, and better managing of ongoing misfortune through a patients life is paramount. I believe there are two areas of Future Medicine that will help. a) Timely reporting of test results to the patient so they may make personal decisions on what they wish to do for their treatment plan, whether government or privately funded, indeed whether bias exists for those on welfare, as it is their own body and they have a natural desire to maintain it. Knowledge saves lives: And equaly taking a note over the phone or messaging system of any further complications / incidents while at home by their local Nurse to record on their chart will help form a better picture of the persons health, for review by their Doctor over that time. And b) Openess about incidents. At some point each of us experiences some type of interference in our normal life by those who either make a known error or play havoc without reason. The patient can be left scarred and scared forever after by those who have few daily morals. The offender must be brought into the open and dealt with realisticaly. And the victim who began life with faith in the medical system helped back onto that same path by staff who really do care. Care and financial support together.
Along the same lines: I would like to see that all types of medical staff acknowledge each patient (person) that claims less life in themselves inside the years they present in. To make an active plan for their upkeep as those with an obvious lower wellness threshold need better looking after inside places as hospitals, no matter which age. To recognise differing living situations brings a poorer health status beyond those who are clearly fit, healthy, active daily. Literally those who sit most of their days from injury and unwellness who have no choice but to exist in this manner. That society does not have an across the board equaly healthy population and the affected maintain themselves more slowely.
All health services being able to take into account existing symptoms while person is visiting for a different service. Our forebears quietly put up with massive amounts of pain, we continue to let that happen if we don't care. Break the old cycles. Real time results help people survive. Indeed that means for the long haul psychologically long after we get home to fend for our body. Something we all want. Including looking after the finer points of individuals pain during their stay. Active doctors are best, one's that keep medicines handy, and understand differences.
An example for you the reader surgeon, doctor or nurse. I am sure that a slower expectation of food intake after a major gastrointestinal operation would be welcomed by the new ibd crohns patient lying 'motionless and tight' in their hospital bed. Far lighter foods need to be offered, and for longer weeks, a need to remain on items like jelly, ice-cream and warm drinks to avoid their first ever possible flare-up, of which they will experience many throughout their lives. Along with the usuall intravenous antibiotic drips harder foods and existing bolus can make for a very unpleasant post-op experience. Even the lighter foods can take a longer time to pass by fresh (almost inverted) stitching. Thank you for listening on this one.
The longer explanation is simply this: I awoke from my operation with the same volume of faecal loading as when i went in with a full stomach of food very late the night before, which by now had moved along and down closer to where the perforation had been operated on. New young doctors, nurses and well meaning meal staff wondered why i didn't eat if i'd already had my helpful operation, but sometimes the internal stitching area can become inverted and cause its own blockage, including for some the saline drip can be drying for a crohns patient. Personaly i would prefer my own bodily rythms and fluids and home meals take over afterwards rather than an antibiotic drip. To get the body back on line sooner with all things it is used to. I am certain feeling as one would take a far shorter time and allow better toiletry sooner. This is certainly worth mentioning, and should have done so for others years ago. Additionaly, i found oral medicines would not sit well in a body that didn't feel ready and with bloating already happening. Kickstarting your eating requires more of the correct fluids for longer. For me those are sweetened cups of tea or just milk. And the coldness of winter sometimes serves to further tighten an already taut ibd abdomen. Read your symptoms, and change your causes and effects as best you can.
Separately, undergoing a major operation is surely no small thing for both body and mind, but there can be one small thing that can remain unnoticed or unknown to staff. Some types of surgery means yourself remaining on the operating table for a number of hours. For those with existing spinal issues such as the lumbar and sacrum areas can come away with those areas in a great amount of pain. Simple issues can be the hardest to have help for. And while there is some foam support during, it is often used for elevating specific body areas. Help yourself by taking along some muscle rub such as tiger balm or cool anti-inflamatory gel and use before surgery begins and again later as you will still be lying down afterwards without any walking or pelvic exercise to re-relax those areas, per a normal day. You may also be fortunate to ask for padding between your lowest spine and table.
Invest in finding longer lasting relief for dental patients. Those folk who are suffering hard pain right now but their appointment is many hours away need to gain relief by local injection for the duration in waiting. Travel to their dentist for immediate relief and return for the main procedure will never be a problem for folks as it assures treatment. Far better than suffering while waiting. It means they can still eat and function in their useful daily purposes until the dentist is ready to see them.
Just one medical area, surely. But for so many years now i wish i could still take headache relief like disprin that solved about a third of my neck pain, but unfortunately also seriously threatens my ibd with not only extremely painful s/i flare-ups but possible further surgery for a likely perforated intestine. The other half of that whole requirement is for our relief to contain no salicytes. I would dearly love to see if a pharmaceutical could be developed that doesn't involve that or internal painful drying issues as seen with codienne. These are the real daily issues that give many peace or not. One less thing for us to monitor. A life more bearable. Pleeease?
A hospital stay or relapse of poorly symptoms can have us return to find help. However our lives have become personal to us as we try defeating disease within daily. It would be most helpful if medical conversations no longer took place inside ward rooms where others can hear our details and important points of conversation with a doctor or nurse. The need for medical privacy cannot be overstated in our modern lives. The olde argument that multiple unknowing ears won't matter hearing your ills doesn't add up when you need to remain private in order to focus on our own health needs. Conversations can be broad and technical, no one else should be privy to hearing what ails you or the specific information you need to speak about that may crossover and have a bearing on others situations too. That means an offer of kindness shown to us by staff asking if we would like to discuss any issues fairly and quietly elsewhere. As patients we absolutely do need the right to ask for our medical conversations to take place out in the hallway, no matter the physical requirements of briefly accessing that location, please.
Learn your illness(es). When medical staff ask you if you've seen a physical symptom lately, they will simply expect you to know what to look for, but they seldom speak up and give you any clue as to what it looks like, and your answer is expected right now. Sometimes annoyed and then left alone they hardly say to keep an eye out for it before your next visit. This can be doubly difficult if its been a situation of (for whatever reason) not getting to see the specialist for a long time after your operation. It's important to ask questions politely to prompt a fuller conversation so that you get to both appreciate your own damaged body better, and discover what they want to know from you. Literally, help both of you.
Chairside manner: Please avoid inflaming your patient doctor relationship by simply announcing some giant sized belief to your patient about how you think they may be, particularly when you know they may be putting up with daily difficulties throughout life. Rather than go straight to the terminology, ask them about their recent days, and never quieten them for their own good to give you their best reply, please. You will send them away wondering what to ever say next time they come to answer your questions and receive help from you.
All of these things may seem difficult for the un-initiated, but if your heart's in the medicine and people it will flow and won't be a such a strain after all. Staff are patients at some point too, everyone can move into understanding better.
Staff who don't already naturaly know or understand through training cannot contemplate or appreciate how people with multiple illnesses suffer daily. That it's often the little things that add up, beyond us keeping the main things under control. Total discomfort is arrived at quickly if certain pains arrive at the same moment, briefly standing or changing position or cushion support might help. This is borne out by once in a while asking for some minor comfort to help get through a procedure, but can be received as unnecassary if the staff may not see any point to your request. This is where we as patients can explain how this helps us here today, find the spirit to speak. Remember your main information points so they know for you next time. Avoid getting into shaking with pain. This helps everybody know.
Floor length windows in a highrise hospital are not likely to help aleviate either virtigo nor fear of falling for any patients placed right next to one in their hospital bed, perhaps we could return to having waist height window sills to help relax and allow a healing peace of mind again. Modern is good but they need to represent a solid wall at the end of the rooms. A mindful barrier such as glass just doesn't really do that for all people.
Things that shouldn't need to be advised: Surgery, dealing with any possible issues later relies on you keeping a parallel mindset as you we travel. Take an exact but relaxed notice of all things on your journey through the medical (or any other) system that you move through in life. Take your main notes along the way and make a point of writing specific occurances to yourself physicaly or spoken, perhaps even inferred. If anything becomes suddenly important and needs to be dealt with later on, you need that information to show how it came about. People can still save their own spirit for future life when no one else wants to, or has no interest in doing the right thing on your behalf. You need to avoid that situation of - When it's considered all too loose on people and times to be identified and considered and repaired for the patient, yourself. You may not realise it right now, but everyone in life needs to walk away from something that went very poorly, even you, not just physicaly but capably too. No matter how tough you think you are. Live in peace always, your whole lifetime. Other people DO need to learn from the things they do wrong to us !!!
It would be really very helpful if we could have our latex gloves dusted with powder again too. They are often used as a means to placing hot topicals as a rub on painful muscles and can be used upto six times each. Since becoming unpowdered we have been forced to spend more money on quantity. We should not need to use cornflower that is far more grainy and difficult to powder, not all of us like the smell of baby powder. Thanks in advance.
The load we all share, and suffer poorly from. The truth is every single person makes our world go round carefully. The realities of our world mean too many patients are now coming away affected by less than normaly satisfactory interactions with medicine. Some place this too often with the patient and not carefully balancing the views of all participants. While people require answers to issues and staff experience varying levels of overload it doesn't answer the need more than ever for very best chairside manners. Doctors are needed that keep both pace and peace in recognising their clients total daily disability when they come to see them. Indeed one of the biggest issues facing the consultations' future is in finding doctors who have the ability to help those who have been corrupted against and have lost almost total faith in what replies are handed to them by the rapid doctor making their way through the daily list. There literally needs to be doctors who are specifically trained in a similar manner to life coaches that can de-stress genuinely damaged patients that are having extreme difficulties, to not use divisive language before enquiring how their patient is today, or at all. The very ideal of medicine was to remain positive for the unwell, not throw context that ensures they do not feel restful or go away with severe worry for any or all further visits. Permanent worry for their own future by a poorly intended or worded conversation can be devastating for those individuals who often have it hardest among the living. First do no harm also means do not transfer depression by way of your own intrinsicaly technical life. The good any doctor can do for humanity is by far an open happy human care than darker self upon others. Never classify as deserving or undeserving of your time or belief in them, ever. The world is growing, there is never any time for toxicity to exist. Those you see are often learned in life while others less so, but are all the same. There should never be any need for you to quietly consider yourself as unbecoming or a problem to your own profession, for your own best balance in daily practice. Please feel to give a heartfelt apology where required through time for your own misdemeanours that mean much, your patient will surely notice. Thank you.
( Kindly consideration shown by doctors during any epidemic for an existing patients personal health appreciated too, meaning a cease of usual difficult health area conversations undertaken, to allow for survivability purposes helpful also. )
And lastly, it would be helpful for every Doctor and Specialist in their own field to visit a one of their local Support Groups (alternating) each year, and for each group to have a speaker that relates their story both personaly and medicaly. Making contact both with wider communities and themselves understanding entire systems hopefully works in everyones favour.
And never forget to check your filled scripts at the chemist before you leave. It could be that one medicine you need that happens to be missing just this one time. Smiling staff are sure they have, but be sure yourself. Caring for yourself properly means making sure everything is in order. It's your very own responsibility in this lifetime.
Dr, please never negate by time allowance an important conversation for the Patient - privately out in the corridor !
PRIVACY
Better Medical Privacy : will become something we need to speak more to as time comes along, if not already doing so. In reality we have a medical system that uses it's own intranet to exchange patient information outside of normal public internet. However at least one issue already does exist, as one doctor or specialist peruses a patients file they pick up on other readings, outcomes, or even medication list - and sometimes present these mostly extraneous pieces of information within a conversation with the patient, whether seated or by cold telephone consult, to ' help advise ' what he or she feels the person should do next. The difficulty for both is where rightful autonomy is seen clearly - or - when it's considered in the way of medicine. However this needs to remain where the patient retains their right to say or refuse a medical direction based on their wider living knowledge with any given condition. Keep with a straightforwards conversation rather than taylor it to your desired outcome please. Your patient today will become very concerned at the possible meddling of their other separate health issues being changed. This medical issue this conversation only please! No future issues for them elsewhere! Keep separate!
Precise Medical Sharing : is another area coming to light as the present difficulty within settings such as the local city Hospital system whereby a persons (patient) Contact Details with their own Family Doctor is automatically assumed to be their global contact details, which is not always the desired situation for them. Understand right now that the hospital is happy to collect in a means of communication from apparently yourself - including as fully unchecked for validity in person. Not forgetting presumed via a CallerID display. All mistaken ways matter. This is a double point i'm making here. For example, a sim card number for txt/sms messaging may have been soley offered to their Private Doctor as a means to making Appointment Times just with themselves and nothing more. But because it's included in their record - is then wrongly included globaly medicaly with the widest area with all others as assumed to be rightfully useable by all medical staff - when that was perhaps never the patients own original intention! What the patient believed was for use by their doctor has then travelled everywhere, quite often without ever being told that would be the case !!!
A secondary issue also arrises, upon the Patient requesting a Stop to using the old or wrong TXT/SMS number with whichever specific Department (health facet) they normaly deal with and spoke to, can unfortunately result in the Staff member alerting their Main Database rather than letting it arrive by its original means that began all this, which in turn unfortunately triggers a response email that again desires to 'Update your details here page or link', frustrating when all that is needed is for the staff member to back delete that contact field so its empty and save, thus letting it be realised wholey systemwide. And although that particular link page has been updated in recent times to reflect a better autonomy for the user, it is quickly unwelcome at a time when they are simply trying to get the number deleted task done foremost, without having to worry about which any next new contact detail they should even find to provide just yet. Please send such a request for user information at a later date, or asked via their specialist nurse at a consult.
Presently we have a situation in some areas where Staff who are not Doctors are not speaking in a professional manner when emailing say a family doctor about an upcoming procedure for their patient and are adding in their thoughts of what they've read in a specialists report but unfortunately completely out of context, thus leading to a poorly view of the patient for something that has occured and then lending it to a non required comment. Please ensure staff do not intervene in the individual Specialist/Patient conversational right of confidentiality and privacy at all times! They are not the doctor who was present nor the patient who knows exactly what they spoke about at that moment. It's not okay to assume one thing means another to suit a view of someone else! Included in these types of things is, please help show staff how to acknowledge emails they receive from patients, an email that kindly asks 'Please confirm you have received this email' is asking for a brief email back saying 'Yes we have', and no other action. Simple kind effective modern email etiquette when talking online. A simple request surely.
One way information gleaning not good enough in our modern world: Systemwide there appears to be a completely silent service running whereby a proposed 'requirement' from a patient is sent out perhaps by email with some link to confirm or refuse some piece of information 'needed from you', while telling the patient Not To Reply to said email giving absolutely no entry point to openly converse with the sender as to important things as to the secure validity of the supposed health service truly sending it, nor being given the opportunity as to how the email address information will be stored and or used in future, nor who will have access to it, considering the public have already witnessed wrongdoing and corruption at various times in the media. We MUST absolutely have an open communications and deliberations system if you are to serve every member of the public equally, please! Please provide fluently trained technical or policy staff to field emails, thank you. Absolutely needed into our futures.
An additional important point needs to be made here too, not all relateable numbers coming off sim cards have return or reply abilities in and from themselves. Sim card numbers can belong to a much wider range of communications devices such as all types of broadband modems that deliver Service Provider txt's to their Paying User only - but otherwise intended for incoming Internet Data Only and not txting outwardly, a once off mistaken use of a router sim number can also ellicit the wrong assumption also these days. Better care in both considering and sharing / using any such numbers needs to be set aside at the Primary Carer first and foremost, a simple patient Primary Data (within) and Global Data (all) in-house software update or addon would solve this serious privacy issue. A simple tickbox added alongside input fields at the primary care would indicate permission is then given or not. Never assume firstly !!!
Including one other serious point, for at least ten years or longer now, there has very much been the ability for the sneaky wrongdoer within/out of our society to download spyware and read private messaging and by assumption know a persons life from at least the surface level. This is no differently from how software was very wrongly produced that could read and piece together pager data many years before this too! Please be secure in your global approach, medicine! ALL doctors, nurses, staff, systems should be aware of this very point, that 'securely travelling patient information' be taken far more seriously. It's absolutely akin to speaking something out loud at one telephone while someone is listening or rather eavesdropping in the background right there, while the patient is worried on the other end of the line! Catch up with all forms of our modern reality please medicine by giving peace of mind to your patients with a better communications system in place !!!
Not forgetting hacking from a distance or the other still used drive-by data collection methods by a range of others !
We as Patient People need to see these two main issues play out better in real daily life, please !
A privacy issue is one that plays out in the wrong hands for ALL our lives !
Please take away the ability for bad people to change life !
Personaly i use Paper Mail only !
Or, then perhaps email !
A data trail !
INFORMATIONS
Further upon the above...
Where a one single email hub for passing messages to the various important staff and heads of departments it is most important that intermediary staff only forward email messages and not become involved with their own input to whatever the subject at hand. This was recently seen twice by myself, rather than the content cleanly sent through to that dr, no matter their perceived good intention. The person was spoken to and it returned to normal, all but for the future potential for the same again in future.
There should be mentioned also an important difficulty where if a patient cannot speak directly, cannot feel they will be able to speak candidly with an important staff member of a department in regards to requirements or pertinent personal information for an appointment. We as patients would feel more secure in emailing directly to the person.
The reality is any lack of manner of ages and levels of human interaction experience leaves an email hub open to inquisitive eyes perhaps not understanding the conversation, and then perhaps putting in a personal comment themself which they don't realise breaks the patients sacred privacy no matter what can lead to a breakdown in that endpoint medical relationship.
For these reasons it would be better to return to a senior nurse of the dr or surgeon taking and forwarding emails only, and not for general staff that may be swapped about.There needs to be a security of the impetus of doctor / patient desires getting through without interruption.
Wishing for a faster tracking modern world doesn't necassarily bring with it faith in the system !
When a return message is sent back through to the Patient it needs that Doctors name !
Separately...
Seeing and knowing whole picture...
Re-identifying the obvious can be tedious, detrimental...
The longest term care requires another level of respect for individuals...A batch of fresh new patients on your list ? But for the ' long in the tooth ' re-answering becomes impossible...
The other day a dr said to me he would naturaly hope that any other dr would always question the validity of some part of the whole, but what i wish i had replied was that those of us who have a higher self management experience absolutely need to be given a break anywhere we can get one, to not be removing a medication (example) all because they may be late to our newer specialists role thus consultations, and not just simply because it had already been arranged that way previously based on best knowledge going forwards. Multi-chronic, multi-facet folks work hard at it and need a refined method of communication instead of the newby question and answer slog !This should not be where the system replies ' but that has to happen ' is not actually true !
It's completely tiring perfectly managing all things daily !
The small things take us away from us !
Please help by leaving knowns !Thank you in advance . . .
MORALS
The way things were always meant to stay for us...Normality dictates every medical conversation is Confidential...
Sometimes it's time to highlight an issue of missing morals in medicine...
IF you are joining in to our health system for the first time, whether an existing resident or visitor, that there is no individual privacy with your health information as it is expected that you automaticaly agree that ALL departments and clinics apparently or self assumed have their own right to pass personal details on to others.
This is what they call progress, but which never teaches patients it's in their own hands.No one bothers to tell any of us to learn to speak up if we need to.
The widest possible imagineable conversations happen every minute of the day about each of us in a public health setting without us ever knowing, it pays for us to be more aware than we presently realise.
As just one single example there are times where you may speak to a specialist about some separate facet of your issue you don't require your doctor to be informed about, but alas there are staff who were not brought up in medical school with understanding a patients rights and never ask them for approval to pass such informations on, that indeed your private gp or doctor in any case does not require. Unfortunately there are those who have no concept of what is appropriate to pass along versus standard whole subjects regarding separate diagnosis and prognosis material only, and not private side issue questions.
Many other examples exist, such as a member of a family not requiring the whole family finding out about some private matter in your life that may change the perspective of others, it would be foolish to believe all knowing people will naturally turn a blind eye, as another human being thay may carry a point of view about you forever. Please appreciate medicine delves into more than simple physical injuries, and that other parts of you sometimes need defending too, a what should be natural process not always followed in this country of doctors and medicine as shown in occasional news stories that come to light to inform us all to care more overall for ourselves in what is too openly shared or too readily used without our permission first.
As such this part of our medicine needs to head back to a more secure time to give patients faith that what they discuss will not be aired or used to influence their own doctor in their coerced view of yourself. A simple informed consent already exists but only for actual medical operations but not conversational material. That needs to be updated to having privacy from each doctor you have a consultation with again as it was. Start this sooner...
Previously i would be asked if some point could be passed along, this no longer happens. Every person as a patient within the health system needs to indicate to that particular doctor by being asked by them whether they consciously mind that part subject be sent through. If your'e not being asked then you need to raise the point with each health professional as realised or required by yourself, be one with the ability to protect your own dignity, which happens to be written into law, to protect self.A few other things to remember, you are the patient, it's your own personal body that is going through living with an acute (temporary) or chronic (lifetime) illness so any information should come directly through to you first, and in any case you should always be sent an accurate equal copy of that which is sent to your doctor to read, to not necassarily act upon. You should not need to go to great lengths to explain your position on these points.
Including, you have the right to choose which medicine or direction to take for treatments into the future for yourself as you are the fullest most aware person regarding other combining medical issues that impact you and your living life continuously. Know and Listen to all the information first.
The next time you go along to your GP or Clinic you are allowed to check both your private communications details on file, and request the validity with each doctor on what has been discussed in that medical session will remain private, literally on a case by case basis through all time. A throw away society shouldn't have this lowered too !Here is another important part : https://www.hdc.org.nz/disability/the-code-and-your-rights/
Please remember, every other thing ever shared is another break of your privacy.
People often answer their own questions, but not for their own selves.
Do not go along believing this is decided kindly on your behalf.
You need to speak up at each and every important visit.
Please take care of your own information.
Understand your own approval.
Think before leaving.
For your own good.
Future.
SELF
Quite often it's only through pain that we come to know ourselves . . .
Feel and identify with your spine, give yourself a back rub. Simply find a couple of fabrics, a rough towel and soft woolen scarf, used separately or at different times. Use these as part of your meditations and healing every other day. Relaxed sitting or standing, arms outstretched holding each end, slide over your back from left to right, from the top down. Slowely, and feel your tissue and spinal nerves react to a new healing. Not unlike water in a shower, fabric can release positive warmth. A couple of moments alone is all you need to feel better than before. This method may also help some people with intestinal discomfort with release during toiletry times. It has certainly been a positive in my life through these later years. And remember pain alone can make us feel tired. It can also get very tiring looking after our illnesses, maintaining our medicine intakes and any excercises, doing all of the same things day in and night out forever, so ensure you get enough rest to do it all again tommorrow. Be well - always !
GOING
Everyone knows how to ' go ' right, i mean they write books for toddlers so surely us adults must know by now? But having Crohn's means a part of our gastro' walls are damaged and built back and forth over time, plus there's a small army of muscles that can slow things down too. It comes down to using the medicines we are prescribed such as mild suppositories to their best effect and at the best times, such as just a single one overnight when we feel our colon output is dry and glued up helps release that output. Slight differences in the shape of our internal structure can also make it difficult, one technique while sitting is to straighten your torso, adjust things apart and relax your output muscles by pulling only those in, not relaxing them alone. Literally doing the relaxing work ourselves by pulling our lower muscle floor up. Achieve smooth output, Yay! Strong post output pain can also be sharp and difficult further up where the colon turns the corner downwards, remember that ibd is throughout the entire gastrointestinal tract so it's about finding relief, sitting up in a soft chair get that HWB (hot water bottle and pain meds) behind your lower back and help relax your pain signals back down again. Those burbles you hear and feel is your colon relaxing back to normal plus leftover gastro fluids leaving the area normaly. For total body shakes and pain have a bed with a warming blanket for half an hour on your spine. The effect should be a settling of symptoms, and easier toiletry every single time. Just out of interest eating light food and warm drink and warming your back can be beneficial for many folks to go.
One other thing, never avoid going while at work (or home) like i used to once you become very busy with interesting tasks, it can only lead to dangerous levels of pain, and possible perforation, a trip to ED hospital. For crohns sufferers this can mean that waiting too long on that presently ready output material has the bolus' own moisture drawn away ever more than a normal persons body as you physicaly move about using that very energy up until it becomes too dry and a much harsher constipation occurs. And if it's further up in the colon can be an extreme 10/10 pain experience. It's why our lot MUST drink fluids during our day to lubricate the intestines literaly to make it as slippery and painfree inside. For my intestines that means a sweet sachet and water mix refrigerated drink that provides a continuous smoother runnings. No matter what you are doing press pause for just a moment and go, it will save your insides and yourself and your work efforts from a much bigger downtime.
If your abdomen is in trouble right now - go and take all the correct medicines and heal !!!
Go as soon as you feel the correct signals !!!
SAMPLE
There are too many things that only ever get spoken to you just once in life. The odd very important matter that is sometimes taken too lightly or there's not enough time to fully take in what that something means, now or later. A few days after my latest operation a nurse briefly came by and asked ' . . . would you like the tissue sample ? ' and i replied no thankyou. I didn't really see any point in retaining something that had become cut up and checked for the causes of my illness, or now looked rotten with age, and where on earth would i keep it anyway, in the fridge? and what would i think of having a look at it once in a while? But a funny sort of a thing was already happening by the time i arrived home back then, without it. There was an unexplainable part of me that was angry that i had so quickly turned down a small piece of me in a jar. Now finished with, thrown out because the patient confirmed by say no to us. But it hadn't quite finished. There's been a part of my internal spirit that has beaten me up for refusing to keep what was a very important part that once gave me life, now broken. To visually identify with it. Even one time. I now miss my piece of intestine, so much so that i offer the following to newbies. We as a person who has just had an operation should be asked this question twice, once after the operation, and again before leaving the hospital. Truth is if i had taken it home with me - i could've then made a better un-tired non-morphine decision to throw it in the rubbish, myself, or not. To give it a moment of recognition for my heart and mind and spirit that this was okay, not morbid. And yes a chance to see the actual damage and allow peace to come about inside me. Do say yes, hold that jar, take it home folks. Cry.
Gastrointestinal Research https://www.stuff.co.nz/science/111643349/national-portrait-dr-peng-du
HOME
A small uneven abode completely limits the human torso and wellness. It's never good for a person to be bent over while eating or your body and bones cramped up while trying to move about normaly in a non standard sized house. Keeping yourself standing and sitting normaly each day will help you avoid posture problems through ALL of your years. This becomes more important as we all age too. Open interior spaces also allow better airflow which helps with less bacteria in any one location for too long, also good for your breathing. A house with correct ceiling heights and walking widths will respect your body's natural loose posture, keeping your joints supple. Likewise with a normal spacious interior that allows your psychology and soul to feel freer and less tight. Restricted lifestyles lend ourselves to feeling poorer, your general health suffers. Things we know - a normal sized home helps humans best !
FOOD
Coming this twenty nineteen year, foods and meal ideas . . . for IBD
We are the people who live through events that others don't believe we understand as they unfold . . .
Too many people i have come across in my journey ' manage information ' but have rare interest in human feeling . . .
Some background first as to how i came about understanding my own abdomen for the very first real time in life. After my most recent operation, this one a resection. No one told me i have Crohns Disease, no one. I found out the hard way by questioning medical people and tracking down the written information. Hard but not impossible. Next, it would be two and a half years before i would be seen by anyone for any kind of followup help because my doctor already practiced corrupt thinking. Situated as a national follower he basicaly refused to believe any long term beneficiary patient could arrive at this point already with spine issues, and so to continue forwards with ibd should be an impossibility in his idealist mind. He nearly exploded. But no one can stop their body from failing, sooner or later. I live having to understand this unpeaceful anti-health politics.
Those two and a half years were easily the worst years of my life. I went through every kind of internal hell. From the moment i stepped into the hospital and catching an infection along with others while trying to cope with handling another operation and attitudes of a few staff and harsh medicine and one serious issue. Only to come home to abdominal pain i had never known before, for years on end. Not to mention reliving a few things later on. I absolutely write this here to help anyone who has never been given any sort of knowledge or aftercare howsoever. It shouldn't have happened to me and it shouldn't happen to you either !!! Now then... As you do your own research for yours please note i can only share what has helped my own self. My very best wishes for you and your own form of IBD . . .
My weekly grocery list has never been more varied in all my life to date. In fact, at the beginning it was mistaken variable intake that has both kept me out of danger of further perforations, adhesions or gaining more diverticula, including trying to desperately avoid my two strictures from billowing out and causing massive pain, and therefore ambulance trips because certain foods have helped break down solid bolus that would have otherwise lead me to many more critical moments, and taught me what to put down my stomach. My steepest ever learning curve to save my own life. If you have a read over the above section called EATING (nine sections up) you will note some very basic ideas that have been useful, however there is more to life inside of us.
I am an ex-labourer outdoor worker type and so my head was always in the eat tons of yummy stuff and go burn it all off doing work, which quickly became along with the very poorer discs in my neck and spine a foolish way to continue eating food and living. And old ways die hard unfortunately. Lunch needs to be lite until dinnertime, a single soft-poached or light butter fried egg is heavy but is also needed protein, and you want some thin white (easy breakdown) bread under that, but with the crusts trimmed off and not toasted, but with soft olive margarine atop, still stodgey going through but a chilled (mid range acidic) tomato with the ends sliced off and cut in two with the peel removed helps with both later digestion and some vitamin e for the skin of your sometimes raw painful intestinal walls - which are now your own personal focus.
Due to the internal sewing some of your earliest meals can be very uncomfortable for the first three months, but easier there as the two rings of flesh knit together and settle down. Think small nutritious unblocking smoothest types of foods and drinks. No alcohol. Rest. Continue your new gastro' medicines . . .
Once i came under the wing of gastroenterology my whole world felt completely lighter and possible again. I began learning all of the many parts of the whole that i had been missing out on. Medicines i had never known about now went to work in me. I cannot relate how fantastic that all was and how helpful for my management today and into the future.
It was literally a new start for me, just very very late. Let's not mess about here, if i hadn't got off the side of my bed late one might as tired as could be from my painful spine to go have this dealt with i would be dead from overnight infection. What i didn't appreciate was that i had already perforated and my levels were all up high.
I count every single day as fortunate, no matter how little i can physicaly do anymore.
. . . the dinner menu's coming up soon enough,
inbetweeners, just right click open into another tab and read between all . . .
Link: These simple food changes will help reduce the risk of stomach upset
Also: Think Twice: How the Gut's "Second Brain" Influences Mood and Well-Being
And: Your Digestive System & How it Works
Go slowely and we live longer, those who speed - forever need to take time out, just to recharge their minds.
Dinner. When i left hospital my saline/antibiotic drip and nil food had a huge impact on my eating, digestion and toiletry. So very many hours and days of torturous pain. In the earliest days i needed to eat yoghurt, then onto ice cream desserts for every meal, just to swallow anything, just to make or keep any energy at all. I was forever tired. I eventually worked my way up to rice bubbles, and then milky weetbix, with a banana! I'm talking months here. You know, I just love people who say they don't understand something I've needed to do with actually a medical or natural reason behind it, but work within the system, it's because they have no idea. Because you are employed somewhere important does not and cannot give you actual life experiences. That personal knowledge that you gain can then relate for others lives.
I literally needed to stop eating after that particular operation because almost every food was causing me serious pain as bolus moved it's way over the stitches, and pain from bloating, and not least dragging along my dry walls. (a desire for understanding and helping alleviate this specifically recieves little help by others). There were a few other procedures done within those repairs, some that i'd already had an inkling about but could never ask my doctor for fear of rejection of further help. Trying to sleep at night feeling food move through me was just so much fun. I also remember my own disbelief when finaly told intestinal dilation from ibd can cause some of the very worst pain of all. I had no idea, a few beers, burping right? Wrong. Nothing like the same. I have been through so many pain events that I stopped counting years ago. Next came putting on weight, within that first two and a half years I basically lost my tallish medium looking frame. It wasn't until that purposely delayed help started arriving that my intake began making more sense. Up until then i had been fighting with the fridge and my body pain.
This morning i've just had breakfast and signals continue the moving around of output, there is massive pain from something drier i ate last night, moving slowely across the top of my colon before the final turn downwards. It feels completely unbearable and this typing is all i can do to not move my body or get vocal about my agony. It's about sticking it out, staying completely still for fifteen minutes as it moves past, and hopefully no one will bother me for some menial reply to a common question or the cat get me up out of my chair. Perhaps ilius or sleepy colon is also present. Forever onwards.
I needed to start eating for the first time again, exactly like dad had done about fifty years before. Relearn what my intestines could cope with, but not necassarily what everyone else was suggesting. But most of all small, but tasty meals. Bread has been the biggest blocker of them all. I used to enjoy supersoft thick white, now i can only just eat supersoft thin white with no crusts. I also needed to quickly work out the foods that would help keep a smooth throughput such as legumes, certain tomatoes, potatoes without skins, mashed carrot, water-logged boiled pumpkin, soft poached eggs not fried (otherwise in butter), other types of milk, breast chicken not fibrous wings (meaning thin cuts slices across the grain so it breaks up easier on the way down), mashed potatoes - in fact every which way that's soft and gives you variety instead of the same old style night after night. Food becomes super boring super fast in this type of life. Along the way i have needed to give up almost every kind of yummy item, from slow roasted lamb shoulder chops that cause the quickest blockage (after bread), including the mint sauce that cuts sharp pain, to the gravy that causes the runs. Chocolate, or smooth peanut butter that glues together. And on it went, it still goes today.
Among that list is easily baked beans (harsh fibre), spaghetti (sticky), strong cheeses swapped for processed slices, standard red wine requires water added, string beans, pineapple, rindless breakfast jams are fine, turkey, capsicum (cutter but good cleaner when needed), beer (bloater), cabbage (massive gas producer), brocolli, even simple pasta, minimal satay tomato mayonaise aioli sauces, white wine (cutter), corn on the cobb with butter and holders very sadly gone (infact creamed corn gone from sandwiches too), crackers are one of the dry causing foods in summer months but a single snack of salted chips can cleaning and salt, strong bacons for lighter sliced, fun twisties for potato stix, very fine mesh grated fresh carrot (good cleaner), apples, honey roasted nuts, you get the idea - all my once upon a time favourites eaten for years and years. Many more. Enjoyed. Gone.
Tastebud susceptibility is a real thing, they get you into trouble wanting foods you must not have.
The search for real nutrition in amongst all your NO items becomes the only real priority.
Being brave's a giant negative, however i'll try luncheon sausage once in a while.
The mix of foods you have taken in changes the balance of symptoms.
Avoiding eating dry foods that block you saves your life ! ! !
Knowing you have wind is a healthy signal ! ! !
Which reminds me, staying away from simple everyday bacteria also helps keep your intestines happy. That muck at the bottom your teeth-mug gets swallowed with every fresh morning drink of cool water. Give it a regular scrub out, particularly if it sits inside a closed bathroom cupboard all the time. No air or light makes for icky build-up.
All my life I had never needed to look into other foods, i just ate the stuff and lived life. The 'what's more to life?' attitude like poor politcal policies that don't wish to see humans as real. To avoid or relieve difficult or adhesed areas suppositories help greatly, much like the breaking down of material in the upper areas with laxatives are my greatest friends, along with serious pain relief. Not to mention those for my autoimmune system keeping me alive. Indeed this page is a form of natural psychotherapeutic purging but with the added information for others going through similar medical events in life. It's not that I would love to go back to yummy burgers and all the rest of it, it's that i simply cannot go back. Because it would kill me from one stupid massive event. There are parts of this only i know about. That being internaly careful is the only real way to staying alive.
There has been far too much caused stress in my spinal and abdominal life. Along this journey people who should be in the know look at me quizzicaly when i say that my menu comes with me to hospital. But why, they ask, simple - i'm the only one that knows what will go through me for that day, week, month without a massive pain attack. In short, dinner presently for me is half a packet of bacon, a soft potato, a portion of boiled legume, bread no crusts. To take any one of my specific medicines both within their regime, and as required for symptoms. It is my fixed diet forever.
Here's a few of the pages i really could have done with after arriving home . . .
https://www.healthline.com/health/intestinal-obstruction#symptomshttps://www.healthline.com/health/diverticulitis
https://www.healthline.com/health/ileus
[ would've saved me so very much grief ]
And why bacon you might ask, because bacon is not the same as cooked ham, it is a thinner meat and when fried just lightly it breaks down into smaller particles upon chewing with the teeth actually replaces other types. Like sausages for example, which no matter how well meticulously masticated all comes back together as a mass further down. It also isn't made up of heavy acids and alkalines that can sting the walls as it goes down, nice and bland for us.
Truly one of my greatest hopes for future medicine everywhere is to understand what people are going through.
That old style cavalier didn't help before and still doesn't, that best help is personal care.
The best thing i have given myself is understanding symptoms.
Absolutely realistic every moment of life.
. . . next up, the psychology of it all
It's very fair to say IBD takes you away when you're not ready. Trying to rest? Nope!
Sorry, I will get back to this section in a while, but right now . . .
This is real life for those who don't know me . . .
Today my inguinal nodes down at my inner leg are hurting worse than the rest of the week. It used to be the majority of just one whole day, now it's starting to become two weeks long pain, not great can't even touch the skin !
And even though crohns runs the full length of the tract it took me by surprise today when my throat very suddenly became fully swollen and nearly choked to death, ripping my neck brace off and trying urgently to get air, even tip my cold drink down to quickly cool things down. Hopefully I just must've had a reaction to some food, or else it was a new symptom, or just a bigger flare up? This is forever, i know. Well, it was just small breath's until it came normal.My discs are in turmoil and my throat bones and muscles are just so beeping sore !
A few different things come with all things in life.
Doesn't help having mild asthma.
See you in a while.
( always leaves me with that same scared for life thing like after op's )
FINDINGS
This is a new section that will offer additional information gained from personal experiences.
- A rare esophageal spasm one day in your life can be caused both by your swallowing something like your tablets with liquid while an unexpected large burp is expelling from your stomach, causing you to contort slightly in your quick self-adjust internaly as you're swallowing rhythm muscles travel down meeting abruptly together at the lower area and causing an immediate pain. You may then experience pain at a small muscle perhaps to your right of sternum, which may be felt more the next morning as you move your torso about. If you feel this about to happen in future, momentarily ensure your body is upright and not reclining back in a chair to reduce this bruising discomfort. It can also help to quickly continue on with a warm cup of tea with sugar to warm and sooth the internal pipe area, ensuring also everything has indeed gone through to the stomach. Avoid aggravating that area for the next three days to a week.
CLINIC
For ANY type of Medical Staff to appreciate if someone comes in and gives them a note that says they Cannot Speak due to a massive pain situation - Please do NOT ask them to try speaking causing more pain !!!
The argument regarding relief before or after is of no concern here. It is the patient who is suffering this moment. Through initial common sense you are clearly not likely to get a word from them while they suffer. Hopefully they will have written something relative on their note as to symptoms and cause, how it came to be today. Solving the underlying is the medical professionals job to resolve the ongoing pain. To bring it under control so they can begin to relate through words.
They have not presented to give you grief. Please use your skills.Each sudden patient needs to do their part too.
Write it down.
LIFE
Home Health...
Hold and keep a view to living without pain forever...
Take the edge off your pain and you can move forward a bit further...
Post Op or Procedure have a chat with yourself, a kind of note to self for the future...
If you are sitting there reading this and in misery just remember this moment will be over soon...
There are far and away too many people in this world who are always too ready to spell things out for us, but few will ever remain alongside when things get tough personaly for us. Those people often move away from where they feel uncomfortable. They have little enduring spirit and have no way to console those that hurt. Zero.
If you don't presently lay claim to having a good working knowledge of your own body pain map, then learn how sooner than later. It's not that difficult, something you can build upon, and lasts a lifetime. Help yourself respect your own daily living. To begin ' what made you...' rather than ' what welcomed your spirit into trying?' Think it through...
If life looks grim right now, and with all of your pain, go out and do some outdoor activity, even if you already know it will get worse, have fun with something you've never seen or done before, always be realistic, as more time passes all our abilities, whether able or unwell it becomes less possible as we age, don't worry about others laughing, loathing or spying just go out.It may be all over tommorrow and you will have never completed a single dream in life.
Get as much done or enjoyed as you can before your life changes permanently. Whatever it is - Get it done soon !
Be safe while out with your new condition, you don't have to get physical to have fun. By keeping an Information Card with your trusted family member, friend, or neighbours phone number in your wallet may help medical staff let them know your condition to pass onto important people in your life. That person may also be able to keep an eye on your home, or ensure your pet gets food while in hospital, also at some other time in the future.
Whether we realise it or not life comes at us in no particular order, unless desired by others. We look to find the things we need to stay warm, fed, healthy, and happy as people. Living among others doesn't necassarily come naturaly to all, and its certainly made more interesting by poor health. From friends leaving because we apparently don't match their expectations and abilities any longer, or because they simply don't wish to know. Life still goes on...
We can either enquire and concern ourselves with what others think daily, or we can just get on with things without them, very simple realy. It's not at all negative to follow your own health to ensure no other symptoms arise and make things worse. After all this may now be your required skill set simply to survive, and without pain, now.
If not already, begin following an offline calendar for your blood tests, specialist appointments, minor surgery, and so on.
As others nearby fall behind, offer them some hope from your own book of care.
But leave them to be and continue on with your own life issues.
Put your already lower energy into self care.
Look after number one, Always !
ACCEPTANCE
If you are aware of where life is heading, be at peace with this daily. No one ever writes much about what is considered morbid when it never needs to be, it is how well you manage life around you, and feel inside. If you are dying find your way back home both within and perhaps physicaly. Life was as fun as anyone elses, rest with all your memories.
The course of a creative life. Here's to the Lili Boulanger's of our world too. We all matter. Convalesce.
Some have both: http://www.crohnscolitisfoundation.org/assets/pdfs/ibd-and-irritable-bowel.pdf
And: NZ has world's third highest rate of inflamatory bowel disease
Onto: 6-mistakes-youre-making-that-can-make-crohns-worse
This: World Inflammatory Bowel Disease Day
Also: Genetics Initiative
DEFEND
Humanities issues don't need to be continuous . . .Right in the middle of feeling extremely unwell and you desperately need your peace alone . . .
One day when you are feeling completely unwell, someone WILL say some ' thing ' to you out of turn. Some time in your life, count on it happening. They don't help in smoothing a harder life. Caring is just not in them. Speaking some monstrosity is for those who just cannot care for you and others !This section is for any individual that has had to put with a hassle from any other person, anyone at all, someone who already knows what illnesses you live with through life, someone unthinking about your situation, someone possesed to open their great big senseless mouth, blurting some horrendous out of context nothing wrong with you, comment at you. This is for you to show them your life matters.
Making lite of our health blocks our ability to think medicines through and from focusing on getting better, literally wishing ourselves well again. It all takes precious energy that others are knowingly happy to sap away from us by taking our attention away. Just a comment, just a something that doesn't require us, our getting up to help them, always again over the day!
Other people who have no cares show no care, from experience it comes from them arriving back from somewhere all jovial and just saying it, or after reading some magazine and talking reflectively and dragging some wishful bit of rubbish into life right now, all the way through to a few glasses of something that get's their tongue loose at the wrong time, or just unthinking whimsical musings that bypasses their ability to take real life into account first.Some people can have all the signs there and still be completely insensitive. Truly one of the most naturaly occuring war-making types of individual you can find are those who have no idea about how to look after themselves but tell everyone else to ' ...get over it ! ' They will NEVER ever learn about respect. They will continue haphazardly through their own years, going from one medicine to the next, asking the same questions through their life but never remembering the best solving answer, so enthused with themselves, their foolish cleverness.
Never get into replies like ' ...just wait until you have a few serious issues going off combining all at the same time and see how you feel when someone says something not just unfeeling but completely wrong about you ! ' because that will start something longer that your health is not upto and causes more aggravation anyway. Not helpful for yourself.
If you happen to be one of those types of people reading this, then chances are you need to be told to never be a miserable person to others who are suffering! It's one of many things children are not taught for when they become teenagers, and then into adults. Your own ugly comment stops you from appreciating just exactly how unwell we actually are. To look beyond yourself is one of the hardest human to human thinkings of all time. It's what builds understandings, or walls between people.The rest are just knowingly blatant and have literally chosen to run with the crowd and just open their mouth. It shows they havn't learnt life or care about any other fellow human. You go play with your own sort until you all teach each other that kindness realy does help the world turn. Just let us continue sitting there in peace getting better.
YOU DON'T NEED TO SAY ANYTHING - But unfortunately some still don't even understand this simple message...?
The only real problem we have is having to explain normal life to those who claim to not know, but just don't go there.
It makes us angry. But simply put, just don't speak to rude people who don't care how you are right now !!!Do NOT help them with anything in their lives, look after yourself first.
Never ever give them any feedback whatsoever . . .
Until they learn, and show care . . .
Others, Think Twice !!!
And here's the difference, a person who declares ' oh yes i remember you had a flare-up of symptoms and pain a few weeks ago, i remember that ! ' may well be saying so to be kind and identify with your plight in a positive manner, but in all truthfullness another can have no idea just how much pain we never let out to others. There is no room for facetious speak in our world. We do get to see this once in a long while, and it is nice to be noticed. It will unfortunately always feel a particular way to the sufferer, and to know all of this paragraph and ourselves we learn to let go, so, Thank you for saying something nice ! ! !
And many other conversations just like this one.
LOGISTICS
Chronic tiredness fails us...We each have our own set of energies...
Valuable lessons in life come in a range of types and sizes.Sometimes others say silly things, like : ' ...just go and try it anyway ! '
When you're younger, choices and decisions can come at you fast, all achievable...Too much of our population has reached a ' crowd belief ' that pain doesn't matter anyway...
Over the decades to becoming older, depending on the work you used to do or the types of physical things you're still required to acomplish just to live, you clock up a number of chronic illnesses along the way, just a fact of life. Perhaps it's an organ or disease, or chronic pain, something truly intractible, but you are still required to continue on through your years, both by your own accord and or others unlimited expectations...The pain increases exponentialy the more you go on your active way through the day...
But no one at all understands any of this whatsoever until they see you laying there.
People generaly think of logistics as the means for you to travel somewhere and regularly. But it is actually much more when related to medicine. The context then becomes if you are prepared for an upheaval from your managed medical daily life, perhaps to attend a therapy you are told you need to begin, and often, like many times per week, to perhaps save your life. Pretty serious. And this in turn truly becomes a whole new place in your human existence sphere, and you need to suddenly begin thinking very seriously if you have, if your body has, if your wholeness has what it takes to think through how you will do this. How you would be able to get to the point of actualy climbing into a vehicle to arrive there, do whatever which has its own set of thoughts, and back again. It can very quickly get to an ugly place in your mind as you begin to logicaly tally up your desire to become well again with equating how you see any of it actually getting underway, and travelling there for all that needs to be in reality sorted first, before any of it has a chance to happen. There is no overthinking for this area of life, you do need to know if you can make it properly, without parts of your life or actually yourself breaking for real under the new load.Because when it gets so bad the pain brings you to a stop and you cry just waiting...
And if you are lucky pain relief somehow gets into you but you can't always get up.
Unfortunately we as humans can be so too positive for our own good at times, and something fails in some mighty giant way, all because we didn't give the precursor to an event the proper respect it deserved prior. If you're already in that situation above with your painful life then you already know that normality for you is different than the able bodied, that you move slower each day, sometimes not being able to at all, and yet you've just been given a challenge by a doctor to attend a clinic. Straight off the top, avoid listening or taking in talk of how '...i have ninety years olds that can do this, so why not you!?' because that is just simply unknowing disrespect by someone who should know better in medicine. You just don't need that, not if you're already faced with consequences. And as a matter of course any medical person who says this needs real life experiences to put their view into correct. Not everyone has the freedom from body to just do as told, expecting so means they don't or have never learned all manner of ailments and their destructiveness to daily living upon the willing. Learn please doctors, nurses.
If you have needed to go through everything to get to this point your bones lock up...
You become terrified your neck will never move again if you move it, relax, wait.
And it literally goes like this, reality is a whole bunch of things very hopefully coming together in the best possible concerted way you have ever hoped for before: That you can quickly come around to re-setting your body and time clock back to everyday peoples timebase mainly because of what you go through, and medicine on balance should absolutely already be aware of this, occurs by simply being one hour out one day with critical pain that things annoyingly roll forward within your daily life, because you need to assure you don't go assuming with yourself that because you're single you need to ensure things like fixed amount of daily washed and dried undergarments and clothing is somehow even with all your lost energy be prepared for the next day, while having old but wearable shoes, while trying resting from that session, along with the darned global warming temperature that throws you quickly into soaking sweat exhaustion or even heatsroke getting there and back, including for your ability to spend on external foods as you travel, along with brilliant timing in your own state of serious pain will somehow arrive there settled and focused for your daily appointments, really does begin to add up piecemeal in a very definate way to make it very nearly one way or the other not possible for your many decades old age. To make it, for yourself, to survive. For weeks and months of it... yep !When you finaly get to escape the series of terrible nerve impulses you're so tired...
But there's yet another day and you're very sure by now you cannot do another.
I won't be the first or last to have this very same challenge, sorry 'set' of challenges, suddenly placed into my life, many others go through this constantly and get badly worn down, mentally and physicaly long term, some have sadly tried and failed and either gone on to succeeding their health cause in a whole different way than what was originaly 'thought' to succeed for you and win, or fail and pass on by way of the forever dreaded term, complications. This space of speak is not for getting clever or smarmy about, these are all of our, one day in the future, most serious but hidden sets of decisions we have to face if we want to hold on. Every life has it's own unique requirements, one could surely argue by making the very most simplest life with an empty house so to speak would give you the freedom to do anything you like at any moment at the drop of a coin, but real life doesn't work that way. You could too, say that no matter what material objects you need to control should be workable. Both positive thinking scenarios have at least one or two opposites that will negate success by the level at which all things stand for each individuals life.And this is where you have to come to a permament stop for days sometimes weeks...
You can have all the positives you like but it's not going to help you further.
Every one of our lives contain a full mixture of easy chunks and adverse pieces we need to get around for it to flow as easily as possible, and that's where a quick accurate mind can come into its own in delivering your own best decisions, except too often that chronic pain or whatever it may be at the top of this section unfortunately takes your concentration away from a perfect or near perfect weekly outcome for yourself. I literally take my hat off to those who can get everything down-pat at an older age than even mine !!!Meanwhile everyone else in life is moving about around not seeing what you know...
And it really wouldn't matter if you had the most exquisite words, they don't !
Well done, and in the meantime ensure you think about everything you are really being asked to accomplish by a doctor one day out of the blue when they reveal to you they didn't get all of your cancer after all, and give you only two and a bit options. That smallest option actually may be your very best hope, because by then you've realised all possible positives and failures in your accrued knowledge.And sadly i suppose it will always be that way with our fellow human beings...
Describing as best we can but never ever being believed through time !
That right there is your next hardest part that exists in parallel with this logistics article, the fact you need to quickly decide which of the two major options to you has the lesser badness attached to it before you go along. There's no point having any type of therapy if the side issues of medicines making you terribly sicker begins or does outweigh !
Until pain comes into their own life as doctors, or nurses, or staff...
Reality without any internal falsety to fake getting by !
No reasonable specialist, doctor, nurses should be expecting you to have the most uncomfortable ride of your life all because pharmaceuticals or device delivers an extremely harder edge to your supposed healing plan, folks. Look out for the severe side-effects too, plus the new med's that stop it, or less treatment, or longer damage from trying...
And having faith, good blood running through you, your diet and self positivity, and localised medicines instead, and a few other things may actually add up to your own realistic ever hope. Nothing else, just these and you.All including other responsibilities you may have in looking after a sick person nearby or other things daily.
Not least the actual limited amount of money you have to make any of your therapy really happen.
These are the very things that make deciding your own fate that much harder too.
Real life responsibility means making the very toughest decisions.
Think about all of it before beginning down their path.
Take time out and feel how things will be.
Do the best whole things for you !All of it, good folks !
Only you !
Stand in front of your proverbial gravestone looking out at the world coming at you,
not behind it holding on to the top afraid of what you'll find, heal how you can !
p.s : logistics is not just having someone helpfully pick you up for clinic, doctor !
p.p.s : truth, normal life can be deadly, realise it, now !
BEDSIDE
Reflect in words what you need to say...ALL parts of your life both seen and unseen are most important...
Medicine is about everyone being on the move being sick and others helping them...
From growing up as a baby and later a teenager then onto adult living out here in the world alone you will have come to fully know and expect a standard of medical care. Once in a long while you may come upon a new scene in your life where the doctor or specialist, while brilliant technicaly in their chosen field has very little or no hands-on real life experience. You may even find yourself needing to make serious decisions about which of two paths to follow are more important than the other for your continued pre-happy life.
It is expected that once you have navigated those early years that you become responsible for your own health foremost, both mentaly and physicaly and beyond all other parts of life, and that the public health system is there for you if you become unwell, or seriously sick and need their doctors medical assistance to become well again. There then becomes a required trust that such a large organisation with all its individual staff have the ability to repair and guide you onwards so you can return to your normal daily life.
In such large medical buildings such as hospitals and clinics spread across our landscape the specialists, doctors, and senior staff can and do move from one location to another as it may mean gaining further experience, which means you may have a new specialist looking after you just out of the blue one day. And naturaly you expect that from all you have learned so far from your brilliant previous specialist that this one will carry the valuable help onwards in your life, unfortunately this is not always so.
Making the very best decisions on behalf of yourself means taking in all pieces of information and giving them a value for each, one or more knowledges over others or perhaps above other facets about your medical condition. Where you can easily say that if you do or leave one thing/s out, then the other things will help you most over the longer term of your life. This is your clinic doctor and your own self through that period of time arriving either together, both similarly, or needing separately the very best overall decision.
People in society are generaly happy to follow the typical advice for any given medical malady that affects their health in some way because they can see a clear path ahead to a final consultation one day. Sometimes that is unable to happen easily if perhaps your specialist does not wish to see all other parts of your disease or suchlike due to their lack of real life experience that needs to be included in your personal decision going forwards, making the transition through that time stressful for you.
Be at peace internaly here, the law says we are each allowed to do what we personaly believe will be the best outcome, and except for the very most extreme situations we have the right of way through our life's decisions. You are not required to go with only one final decision by a doctor. If you feel they have not taken aboard all of what you actually face daily and longer then you need to take that upper hand and give yourself your own dedicated choice. No other person can do this for you, no matter what the believed outcome by others.
On rare occasions ongoing care conversations can become very difficult because one party does not respect the other. When you have ALL the known knowledge, and can explain your position clearly and accurately there should be no descrimination from any other person. Do the correct best things for You. If the medical professional is any way at all rude or unbecoming professionaly towards you then you can ask to change specialists, or if really needed to write a letter of complaint. At the end of the day it is your health, not theirs !!!
To all the many dedicated and truly caring specialists out there we absolutely do appreciate all your self and institute gained information through your years, particularly the older generations that have picked up on all the smaller but of no less serious importances on the very real daily health picture that perhaps a newer doctor cannot see yet in their young career, please lend your hand to them knowing these too so they will make better informed choices for their patients (people) thank you much in advance !
Do not ever hesitate to kindly clear any difficult air between yourself and doctor, it can help more if both of you can see both the short, medium, and long term pictures more clearly, all of it matters together, if not offer them one of these links in your email or txt to show you care about yourself more than they may be aware :
https://www.hdc.org.nz/disability/the-code-and-your-rights/
CANCER
It is true what they say, the news changes you, but it also allows you to get on with it and solve the problem !For myself, as this page can attest, i have been through multiple large health issues already !
None of it gets any easier because each item throws some hard thing at you !
Just be sure to make the best choices for you and body !
Remain Positive At All Times . . . !
You CAN Do It . . . !
PREAMBLE :
My existing chronic IBD Crohns Disease and Neck / Spine / Leg have zero commonalities.
But all require their own unique management techniques daily to live ' normaly ' .
Cancer is a whole other different monster as well . . .
Here for you now is my front to back cancer section as i finaly begin writing this whole new section properly . . .
Back a few years ago it was suddenly realised one day that i had Skin Cancer atop my noggin - NOT sebaceous cyst !
The following year i posted a few photo's of what it looked like on this here net thingy but went no further . . .
That's because a whole lot happened in my world with my crohn's med's weakening my system . . .
What follows will be ways for you and others to help with your own experiences too . . .
Recently i have needed to go through a second operation to get the rest . . .
Every life has a new starting point . . .
Hopefully.
POINTERS :
A friend already had internal cancer and was helping them get to and from the hospital clinic but wasn't prepared to hear about my own cancer From there it was a referral and serious decision making from my soul about treatments . . .
My personal goal from that moment was to be able to get up and comb my hair and go to breakfast each morning normaly - without assessing and treating my scalp multi times a day to keep it down, no matter what !
Awaking each morning and cleaning and applying a ' hot ' cream to kill both good and bad cells to get rid of the cancer was a no brainer but very painful to go through day after day but was the only way !
We allow ourselves to go through momentary pieces of hell in the hope there's light at the end of it all, and i am keeping that same view alive every day until this is all gone from me !
You learn a number of tips and methods on your journey - whichever cancer has come for you so do remember what you read here is for mainly top of scalp surgery only . . .
To help myself i went looking to read : https://www.thesun.co.uk/fabulous/8591251/mum-skin-cancer-crater-hole-scalp/
Mostly, my very best wishes to you . . .
METHODS :
Not all decisions come easily . . .
Options are spoilt for choice truly : Chemotherapy, or Radiotherapy, or Theatre / Local Surgery.
Chemotherapy was not a realistic personal option due to how active my crohn's disease is within me daily.
After being offered radiotherapy i needed to decide against it due to rare historical nuclear power reasons within family.
Surgery was not immediately available to me and was put on a list over a number of months, with interim treatment . . .
To set the context that i faced straight off from the beginning i realised a number of truths that meant i needed to find my own best way forwards, the first being that the Efudix cream prescribed for my cancer and it's instruction sheet was not going to even reasonably be possible and so set about making my own regime timetable.
Going no less agressively to ensure efficacy, in mind foremost : Less days cream on and half as much again recovery !
And NOT just some blatant fourteen days on and no real indication of however long off, or anything on the healing !
I wanted to participate and get this done but not just any old how, not with that level of pain. Remember what we're trying to accomplish is killing the cancer cells further down within the scalp layers, but trying also to achieve as much surviving normal skin at the same time !
And for the onlookers here, Yes Cancer Really Does Hurt A Whole Lot when it's on the way to trying to kill you !!!
You still do wonder after each procedure has come and gone . . .
Let there be no doubt !
SURGERY :
It's not unusual for you to be asked to take a common antibiotic some days leading upto surgery . . .
From the very outset i was fortunate and needing to select an ' awake ' mode surgery because of my two other active chronic illnesses that need my attention.daily. Except for any internal abdominal theatre surgery, management for this body is constant monitoring of how i can get away with movements for getting my life things done.
This surgery, being awake, is NOT for every person no matter what style of being you are internaly. From the moment you are recieving your numbing injections, all the way through the process of your leg grafting, and cutting of the cancer from your scalp and eventual placing of things and stitching is a very full challenge.
This is not for the hero or weak of mind or you think you can get through it just fine.
Not forgetting the aftercare also has challenges too.
Ask yourself seriously first !
As a sort of leading parallel, think about it like a burns patient needing to change their ' raw skin ' dressings !
. . . because physicaly, that's exactly what it's like !
> Also, normaly we are all asked to change into a pretty gown before a procedure, if you like myself have multiple ongoing spine issues then you know warmth is a factor in your life to stop things seizing-up and causing more pain while you're needing to lay there for an hour or more, see if you can place the gown over the top instead. It also makes sense in terms of the scalp being the surgical area and trying to get t-shirt and jumpers over the top afterwards !
> This is a realist page about health so i'm not about to pretend : When you most likely wish to suddenly vocalize the pain during this time it's very important you keep yourself perfectly still. You do not want to cause a mistake to happen on your scalp. One good way is to cross fingers hand in hand and rest them both over your chest while things are underway, find a comfortable position that works for you !
> Throughout this time in the room the Surgeon will let you know as they go from one part of something to the next, these are pointers that help you realise how the time is being used to remove your cancer, from starting the numbing, to perhaps preparing the graft skin, to beginning the incision and on to placing the skin and sewing, telling you how it's looking, to dressing what's correctly termed a wound.
> All of this can be overwhelming on a range of levels for anyone and this is why it's rightfully suggested you have someone come along so they can drive you home afterwards. It would be extremely difficult to keep your head up AND be able to focus on your driving ability to all the way home. Only someone who is normaly independent and has done this before might take that chance to drive. Experience.
> When you get home try and have yourself a good long sleep, you will need it. There's a range of aftercare you need to quickly get used to doing for your situation, start knowing your dressings on a table. Just remember to not scratch your head if it suddenly feels ticklish !!!
> Keep moving forwards with your daily life, the rest of today, try resting in the chair overnight, and tommorrow...
> Avoid being afraid of your medical life and the things you need to accomplish for you...
> Be positive and ask all the right questions as you go along...
> Afterwards : Right now be careful your first Main Bandage does not move ! ! !
> You will recieve further dressings at your first clinic . . .
> Rest until that appointment date . . .
> 7 days before first clean . . .
GRAFT :
Your first clean will see a nurse with swabs delicately wetting / cleaning the sewing edge. Can sometimes be sharp !
As per your first surgeon chat, the skin graft fills in the cavity of where your cancer layers were removed and needs to
both ' knit ' onto the surrounding skin and heal in-place perfectly, any wrong tampering will stop this happening properly !
Remember you are looking after two surgical areas, your main scalp wound, and your inner thigh wound . . . gently . . .
After week one or two you will need to take over from the nurse in softly bathing it with plastic mugs of warm only water !
The best place is over the bathub, one leg in for water run-off, with no rubbing - just pouring over - it's still raw !
Likewise with you scalp area, make a point of doing each one separately, not rushing to do both !
Let it just air dry / pat softly with a soft towel, and put a fresh dressing on, before next !
Use your mirrors to check how the graft is taking, or if there's any small gaps.
Let the surgeon know if there's any large-ish gap at one spot.
Be proud, this is You looking after Your Body !
And stay out of the SUN !!!
> Your inner thigh graft area is covered with one length of special pore dressing so it breathes and covered then wrapped cloth bandage with clasp to hold it. Care for this just as carefully as your scalp !
Tip : A ticklish wound can be a good thing, it means your skin is healing, changing from raw to healthy, keep it covered !
You will be given a range of wound dressings to suit each area, a few gauze, but mostly soft rectangular shaped sizes.
However there was no tape (such as micropore or other) last time so i held it all on with stockinette (white/widest).
With it halfway up leg near wound, use one hand to hold patch and gladwrap cover in place then pull/slide over.
Use those velcro leggings again upper/lower of stockinette ends to stop it from ' rolling ' up, so to walk about.
( A point here for the makers, above stockinette only just fitted my leg width, make wider for others legs )
[ REALITY : Too many medical and others are completely disinterested in knowing whether any person (like a headcrash) may or may not be able to cope being alone in life needing to take care of themselves, tidying up their hospital/clinic/violence wounds after the fact. All brought home by the quizical face looks by passers-by ! ]
. . . life is a whole lot more beyond what you know, such persons !
DRESSINGS
Information can rush past the best of us . . . anytime . . .Take notice of the dressings that you're given, the initial few are either for the graft, or the scalp, not both. That's because some have a smooth looking layer (non woven) and the others are normal ones. That's because some wounds are still busy bleeding and you don't want to be applying a surface that gets stuck there forever (graft), whereas the other has finished its bleeding (scalp) and is dryish and now healing faster. Make sure you know which is for what purpose before leaving the clinic. Or simply write Scalp, and Graft, and Both (covers) on those particular ones.
When applying the coverings at home it's normal practice to put the correct specific dressing on first, and then a normal cover type dressing over the top of that in order to soak up the blood, then tape or other holder.
HOME :
Sleep and rest is your next challenge, think about how you can help yourself through this time . . .
It's NOT natural for any piece of flesh, not least your scalp, to be suddenly cut and your body will let you know this !
Ask your usuall Doctor for a very strong pain relief to see you over the following month, maybe longer, First !
After the numbing all wears off it will naturaly feel hot and painful the next morning . . .
This is the time to have your breakfast and Pain Relief and sit quietly !
Avoid bending >>> your scalp skin pulling at the wound ! ! !
Protect the stitching by remaining still day / night . . .
Every movement shoulders, wherever . . .
Even smiling, yawning !
. . . eating !
> Sleep is best accomplished in your relaxing chair with a blanket !
> NOT laying your head / dressing down on a pillow !
> Expect some bandage bleed-through !
VARIOUS :
The other things fell into place as needed . . .
With the shaving of your scalp it can get pretty chilly once your dressings come off and you begin your own home based aftercare and ensuring the graft is taking nicely between your preset clinic visits !
Life IS absolute, where everyone knows what to do, how to do it, and without unhelpful stray thoughts taking over !
Look after your other chronic illnesses daily and nightly to survive kinder in your life !
. . . care, for your or another person, properly !
CLEANING :
After your bandage has been removed you May be given permission to clean it very carefully and gently . . .
This means having ' luke warm water ' only with your scalp over a basin, pouring softly over it . . .
Simply use a plastic cup to pour gently down over the whole area - NOT shower !
Do not do any form of rubbing with your fingers or cloth at all !!!
And dry blood will fall away naturaly . . .
Same for graft area too . . .
Air dry only . . .
Cover . . .
> There are moments when you will need to dab a specific yellow bacteria fluid sitting on the surface,
simply use a bunched-up ' flat area ' of a dressing, soaked with the saline, to lift it away Carefully !
You don't need to dab it dry after such a clean, simply use the ball of your finger to put paraffin on.
When you've got to this stage of maintenance you can walk about the house with it uncovered...
It's really only when you go out you need to use a dressing and hairband to keep out germs.
Remember with the paraffin to let it follow the sewing line, so its on the both skins, and
including over the middle of the new graft skin area too, paraffin is your next dressing !
Always wash your hands and area after any scalp cleaning.
> Also by now, you may notice a very then layer of fresh skin forming over your donor
leg graft area, this is why its important you only use luke warm water, no rubbing !
CHECKING :
The best way to check your progress is to buy a rectangular mirror, held high to your bathroom mirror . . .
Put the light on and see how the Graft is sitting - contact dermatologist if concerned . . .
Avoid touching it directly except for gently applying the parrafin cover . . .
Use the balls of your fingertips only - do not press !
Avoid cotton balls which leaves behind threads.
> As time moves along your scalp and graft are busy knitting away along the edge of the cut.
Weeks from now they will be attached to each other more closely all the way around.
Consider and touch it very carefully to avoid any non-healing areas of trouble !
If it ever goes wrong you'll need another graft to start again !
> Due to my chronic neck and spine issues i found it easier to set up a pole behind me with the mirror atop !
This leaves both hands free and standing alongside the bathroom basin to wash and maintain.
All you need is a base and pole, with clips at the top to hold mirror.
Stand it in the corner when not in use.
NB : Throughout all of these appointments and attending to your cancer, keep an eye on your food intake and crohn's symptoms or signs of any flare-up, there's absolutely nothing that says you can't have any other chronic condition giving you problems at the same time, literally making your days much harder, if not a living hell !
Keep yourself positive if one or more things become exacerbated, relax back and take it slower !
Some of the things that have helped me along the way are :
> The good old girly hairband to keep your dressing still on top of your head between warm water cleanings.
> Their parrafin based gel that helps ensure your whole area remains sealed like a wet skin cover.
> Long after finishing the above, a spray on Wound Care Solution that promotes skin.
> Or above cleaning sessions, later on Sorbolene cream to keep growing skin.
. . . all depending on how your dermatologist / surgeon see's it
> Including this wooly hat, which you can find a few differing varieties of to keep your head and brow warm !
Keeps the top of your scalp clear while your'e treating it and letting it heal around the house !
Remember to put a proper Hat on if going outside, both now and for Life !
TIP : have an itch ? brush over it with this soft wooly hat . . .
RELIEF :
Simply because your'e noticing the rest of life while awake doesn't make it any easier, no one can take pain away from trying hard not to detect it, it is a truly constant pain. At the same time, as your pain roll's along go carefully for the rest of your body sake with that strong pain relief, medicine doesn't come in a specific therapeutic dose just for you, if you need to have less then empty a little out or break it in half until the next one, take only what you need for now.Accumulated pain relief building up in your system as you go through taking more and more affects people differently.
ADVANCED :
There are one inch wide ' velcro bands or leggings ' that you can buy for holding your trousers for work. This may help you keep your Graft dressings secure over your leg or thigh as you move about the house slowely. Do not use tightly !
For this body area, you May be allowed to use sterille ' cling film ' type covering over dressing.
It's simply a means to giving it a splashproof cover only.
EXPERIENCED :
Buy an oversize Shower Cap for your scalp area if you wish to shower, without Head under the force of water !
Find a wide Bread Bag (open other end) for your thigh and use a waterproof tape, do New tape each time !
( ...for me, i found that electrical insulation tape ideal as it stretches over a distance, sticks onto itself )
Ensure you have ' NO femmoral nerve ' issues before your surgery / graft is performed.
Continue your pain relief to avoid loss of concentration. Finish later.
Gather your daily living strength for your Clinic visits !
Click to see dressings general guide only.
ONWARDS :
The wound will feel tighter over the days as the blood dries hard, persevere until your first clinic and tidy / cleaning.
It will then feel relaxed back, but will tighten again upto before the next clinic where the stitches will be removed.
And will remain sensitive for three - six months later, all the while using the spray, and later cream.
To be sure with yourself, do your first internal touches into the cavity via the mirror view.
It helps your body memory map for the finger to go there once learned.
TIME
Eventualy, when the disolving stitches and dressings are all gone from both places for weeks, when you finaly see no specific line between your graft and edge, there's no gaps anywhere across the grafted cavity surface, and it's just your normal shade of skin tone, you can then begin thinking about having a normal water pressure shower, albeit still cooler, and wash all of your hair properly. Simply keep an eye out for any disturbances on the skin.
The shampoo you choose can help condition your scalp skin so that, in parallel with using the sorbolene during the day, a shampoo such as one with turmeric extract and other ingredients may help you as it seems to have helped mine.
This is where you need to start taking notice of what's in your shampoo's that can help long term !
The level of skin within the cavity will grow to a reasonable height again, almost to normal.
Do expect your graft area to take about a year to get back to a normal skin colour.
Other : You may have a secondary or a few other skin condtions happening at the same time as your previous cancer situation, perhaps a version of psoriasis or excema, so do research online. One of the creams i use for dry itchy bridges of my feet is one called Neutrogena Hand Cream (fragrance free, norwegian formula) in a 56g short tube.
With the surgery still fresh be carefull and only use a fingertip to place a single dot on separate skin excema or psoriasis problem areas out side of the surgical areas only. Doctors and others tend to forget you still need to attend other health issues at the same time, and can actually stop certain things being done that need equally doing !
Look around for other remedies too !
KNOWLEDGE
Eventually, the open graft scar goes from bloody to dry in parts .. .
At around two weeks the graft area was moist with blood but hardening, and very painful continuously.
All of this is entirely up to you to follow or not, but i will add one personal difference to treatment here...
The graft area is re-accessed over a few clinic appointments and the dressing types may change.
For me, i found that continuing with any form of dressing was extremely painful and chose a
slightly different path than the dry surface rubbing against raw open flesh. A one time
applying of thin layer of micreme-h and covered with a cling type film served to
allow movement of my leg without dry dressings pain - on a day to day
basis - and changing it daily too - starting before their say so.
clean and dry and dress before your next appointment
hopefully they'll be impressed at the tidy / healing.
( layers : saline clean w/dressing, dab/air-dry, micreme-h, filmwrap, broad dressing, stockinette )
( personaly i get the feeling some of their own ideas are still new to them )
( they will learn better by patients own feedbacks )
PRACTICAL
Way back three years before now, a year before my first surgery i was busy keeping my scalp cancer tidy . . .
In the meantime, needing to maintain it in a range of ways, i came up with a Mirror on a Pole on a Stand . . .
I literally grabbed a wooden Disc, a couple of Poles from a clothes stand, and Coathanger with clasps . . .
And after finding a rectangular Mirror - put it together so i could see the back of my head for cleaning . . .
There may be a YT video coming along soon to show you how it goes together, really helpful !
Better than getting a tired arm every time holding it up in front of the bathroom mirror Daily !
Throughout all different times, with the effidix cream, later creams and so on, yep !
Look in Main Mirror - with Second Mirror behind you - to see Back Of Scalp !
Pole height to around 170cm tall, and flat wooden disk 400mm across...
End of pole has a thread for screw, base of disc needs sunk hole...
. . . it really pays to be the inventive practical type to help self !
. . . gives you two free hands - easy !
. . . good overhead lighting !
. . . my journeys !
MEDICINES :
Your normal medicines may make a difference to how the cancer doesn't keep growing !
Each chronic illnesses scenario is unique and different from other similar versions.
IF you have drugs that attend to your Immune System they may need to be
checked that they're not letting cancer exist at the same time.
Your goal should be to protect your internal organs first !
Whether surface surgery only occurs in place of
any deeper invasive procedures, it really
does come down to your decision.
Do the least damaging to you.
POSITIVES :
So i hear you wondering why on earth would anyone actually want to go through something so uncomfortable ?
Simple, you go in, have an extreme moment, come out and walk away back to your life, and then followups.
But it's more than that, or looking after my chronic conditions, it's about not needing to get a much larger
circle of flap lifted from your scalp because it's identified as to where most of it is, this way you're not
going to be laying up in a hospital bed somewhere not getting things done back home or infact
looking after your new large wound for your own self in your own timing. And the most
obvious part is hopefully the cancer will be gone !
Like i say it's not for everyone !
> Healing your body in your home environment provides you with a better post-surgery pathway.
You have everything you need there, ongoing life, food / rest, medicines, entertainment, support
with others, your pet, vehicle to gather needs, literally for an all-round healthy psychology.
( Do avoid if you have potential heart or breathing issues, things that might cause serious difficulties ! )
( IF very ancient / medical issues then ask for the asleep theatre version of this surgery ! )
HELPERS :
Buy and use a cheap tennis headband soaked (front of it) with a little cold water to keep your forehead only cool when you arrive home from surgery (or even during surgery to keep head cool throughout time). With your shower cap ensure no one else touches it, and wash the inside of it out - because it may have yellow pus and bacteria stuck to the inside of it. (same with hats if you havn't put a dressing on first). Speaking of hats, ensure you wear a hat wherever you go and keep one both at the door (so you don't forget when in a rush), a soft foldup one in your jacket pocket too, and one in your cars' lovebox while out and about. Don't forget to wipe your brow once in a regular while to avoid any of the paraffin running extremely slowely down your forehead and into your eyes during telly time or whenever, keep a tissue or hanky with you. Safest way to comb your hair is use a large open spaced comb and hold your fingertips down just outside of the stitched line before sliding the comb through very slowely or just a little at a time, expect dry blood particles, this protects the stitches from breaking. And last but not least, remember to not get water onto your scalp until the surgeon says you can start softly washing over it with luke warm water only !
> IF at any point in your life and you need to remove a main bandage at the correct time - alone : Place a finger (of one hand) down on the corner that is stuck down hard on your skin, and with the other hand use your fingers to gently and slowely uncover the skin by gradually peeling away the tape of that bandage - NEVER just pull hard on it - because it may just tear your skin. Even doing this carefully will be leaving red marks later as it is. And never use water or liquids in the belief it will help - the actual wound must remain dry to heal properly !
MASTERCLASS :
Things that may never be available can be the mother of inventions . . .
Think you cannot possibly have more info' than all of the above? I'm ex-advertising and an inventor of things, so yes i have thought of another item that may just help everyone with this situation too. Back in my heavy labouring days there was never any foreman or area manager that would ever tell us to wear a hat (like how they never told us to not do heavy lifting either) while working outdoors scrub cutting, tree chopping, ground clearing with shovels/picks, footpath making and so on out in the pouring nz sun where we just sweated flat out all day long - every single day, but as a hint of this cancer came into my life in these later years i needed to admit to myself i should've probably thought of it myself, so while it became a matter of accepting that i should have worn a hat even though it would've been massively hot and unbearable i got to thinking about how we all might go about protecting ourselves better. I had seen those head-umbrellas back in the eighties, and over a while came up with an idea as shown below. Far as i can tell this was part of some cooking gear, perhaps lid ? and was originaly a circular shape, but with a slight bend inwards from left/right it became an exact fitting scullcap shape which led me to realise it could be used as a temporary cover over my surgical site. And this is exactly how i use this today : By placing it over my scalp while getting into the shower and sealing the back edge leading onto the hair with my fingertips i can block any water from getting onto the wound, remembering the shower rose is above the head, and literally with my other hand get some shampoo onto the back of my hair, keeping my and down all the while and rinsing-off with the other hand means i can wash away the dried blood from the operation and continue normaly with upkeeping the rest of my scalp while i'm still healing !
This is by no means available or whatever to anyone, it's just my own little invention to help me stay clean, given that it's going to be ages yet before i can wash all my hair. You may use the idea if you promise to keep it away from product sales and just use simply as something to help you personally. You could make yours with shaped plastic i suppose, but do remember it may of course be frowned upon by medical staff, i don't know to be honest, one would hope it might be offered post-op in the future ?
Do be accurate with the shaping please, for your own good. Front/Back are differing proportions : pointed/round.
Remember the Oval to suit your own scalp. Notice the curled edging too.
Aluminium. Shape with hands.
jp.
> Idea : On a separate note i was thinking that if it was enamel spraypainted and wrapped in a sewn fabric it might have a place inside a Cap or other hat. It may seem strange to others but in the above working context where we couldn't get away from the scorching sun - we literally used to get a suntan through our clothes ! We would get home to shower and realise only our underclothes protected that skin area and wouldn't be affected. So it seemed to me, also that seeing as uv radiation still gets through clouds on a dim day too, that something like this may be able to protect your scalp better than just, say, a white cap or hat alone ?
Just an idea at this point . . . ?
Sweating, scalp . . . ?
Atop hat . . . ?
OUTLOOK :
After my first surgery a year ago we realised not all the cancer was taken, and we had the inevitable conversation.
And as much as you're shown why, it's very easy to feel aggrieved for apparent lack of expertise.
That settled, i began looking forwards to my second surgery one year after.
The timing was half my choice from a large committment.
A much larger piece of flesh was taken.
I remain hopeful !!!
Update : Today recieved my post-op' results, the remaining cancer has been excised down to the bone, it's all gone !!!
( it really has been quite it's own little big journey to get to this news, through so much pain and worry inside !!! )
( naturaly i thanked the surgeon and team for looking after me, if only could get a new spine and intestines ! )
Here's a little copyright picture of the second much larger surgery : Click only if you can handle it !
Remember my first cancer surgery was around a 100mm circle in the middle . . .
This was a giant sized arc across the whole entire area . . . to bone !
That means 8mm+ down through the skin & flesh . . . yep !
You know when you see fourteen syringes laid out . . .
And there's still enough pain to go around . . .
And parasympathetic(?) nerves after . . .
Think i might cry a bit now . . .
Yay Yay Yay ! ! !
14 11 23
Jeff.
UPDATE : I was going to skip reading the histology, until : Residual nodular deposits of squamous cell carcinoma !!!
It's just that this is my second time around and you worry about false positives or whatever again . . .
There is absolutely no line of text anywhere in it that says it's now all gone !!!
Please report writers, put a line at the bottom that says None !!!
Waiting for an email reply . . . had a chat instead . . .
So i need to accept it HAS gone . . .
Survivor - is not too big !
Yes, None !!!
> One funny side, sort of : You wouldn't believe how many times i've inadvertently hit this blimmin leg !!!
Whatever, leaning forwards, sitting with forearm on it, or a sudden tickle - scratch - owwww !!!
Later : Depending on a few things, you may wish to continue a lite efudix treatment plan around the border.
Ascertain this new period of time from all that you know of the removed cancer growth area.
Basically to just ensure nothing may begin small and grow larger again !
Read the biopsy report for yourself, not just doctors view !
Realise within how it is : More ? or, None ?
Continue the flow to get any further !
Be happy if all gone !
Remember that after all is said and done anything new long after then becomes a new cancer referral.
It's important for your soul to take the longest view of all this so you remain sane.
This article will be checked and updated over time . . .
Print this section out as your guide.
Dermatologist advice first !
FUTURE :
In absolutely all areas of promoting a normal healthy life...
Remembering that skin cancer takes in many face/eye/nose areas...
Medicine needs to recognise and address each different pain right there in the moment...
This entire procedure from absolute Start to complete Finish needs to be made Totaly Pain Free !
Through my medical journeys i can definately tell you there ARE helpful sedation methods !
There's no reason a few of those cannot be considered, with everything there available !
I hope that others do not ever need to go through the same amount of pain !
Future methods of this NEEDS to change permanently !!!
[ pref : s/a milk sol, or midazolam, 60mins ]
[ req : one staff to mon multi pat ]
Kinder for ALL please . . .
PRESERVATION :
Hard Operations can be super heavy on the soul . . .
Upper Thinking - don't think for a moment you aren't capable of doing it . . . !
Albeit for the reading of the above histology report properly, i have always taken an interest, via my headcrash from earlier in life (but rather disabling), a means to keeping my own sanity intact as possible. We all fall into a few different personal techniques for coping with extremes in our lives. One of mine is a method which i've discussed in these pages decades ago. It's literally a combination move by my brain to help overcome, like how did anyone think i'd ever let myself go for a second same operation if i already knew the high level of pain suffered from the first time around ?
You / We cannot just rely on time passing and forgetting these things, we have to come up with an idea to combat our own suffering, so we kind of don't let ourselves see it coming ! Simple really, after we have come through an extreme event we need to personaly try to forget it, meaning forgetting those unique details, meaning every time it so ever little presents a memory again we can learn to switch out our thought to a different subject, it can be anything else at all, whatever lets the memory slip away naturaly without any anguish or pressure from ourself within !
And yes, practice it, and it will work over time. Better than other methods i know of too, because we agree at the deepest level that we don't like remembering this one item in our lives. Literally one item at a time.
It's about giving yourself the understanding from life's outset that we are Personal Managers of ALL of us !
Remember to never overload your own self expectations in life !
Can get any person into a heap of big trouble !
Go gracefully with your mind daily...
jp.
p.s : never tell yourself you'll never fail with emotion, you're human, it's okay !
Next Bit : Already with other ongoing pre-existing scalp conditions, the surgery has brought about three extremely painful nerve spots, to the slightest touch. I'm hoping these will subside, but for the meanwhile i needed to the search for the cause. Google : why does it suddenly hurt when i scratch a spot on my head
Surprising how many have the exact same, something to figure out . . . ?
Just a tickle turns into excrutiating at a touch !
May be just a Free Nerve Ending near the surface ?
Interesting : https://skinkraft.com/blogs/articles/scalp-pain
...beeping hassle !
UPDATE : Turns out after having so many needle tips, sometimes in the same spot, has caused inner Scar Tissue !
. . . in no small way you get an extremely sharp pain just out of the blue as you're walking along !
. . . it happens anywhere around the scalp where the shots had been put in !
. . . remember these were told as one and a half inch needles !
. . . very painful along with inwards growing skin !
. . . a whole opposite type pain !
. . . this is healing !!!
While regularly, momentarily very painful, these ' hopefully ' won't be a lifelong niusance for me...
However, always be aware of interconnective organ postoperative complications and serious
affects in yourself regarding patient life quality going forwards.
IMMUNE :
Lastly, as if any of us thought all the above was all there is to tell . . .
I travel to a range of clinics for my chronic conditions, one of which decided to jump into my cancer situation at least half way through and came up with a command that i should stop my ' immunosuppressant (a drug that lowers the body's normal or over-active immune response ) medicine ' - just out of the blue one day by email !
The problem is multi-fold but which the doctor concerned could not see anything wrong with his choice, or decision, or whatever without further reasoning spoken to me. In amongst his various non-descript email banter that was going nowhere - i had just a few very simple questions - that it turns out - he still could not answer me about !
Q : 1) Did this mean i no longer had my other disease any longer ? 2) Did this mean i could live healthily without any threat of need for further surgery for my other disease later on ? 3) Why was he not openly offering me a new or replacement or separate medicine when that disease symptoms are still showing up ? 4) IF he is pertaining to this medicine helping cause my cancer why not just come straight out and say it ? 5) IF there is ANY possibility that they originaly got anything at all wrong about that disease - Does this mean i should never have been put on that medicine ever - and thus the cancer upon me ?
> Mostly why was he not trying to negate my having to go back to a poorly life with my symptoms - ongoing ?
> I NEED to hear from him these answers before i choose to stop them - forever !!!
> My responsibility lays with looking after my organs first !!!
> Whether i get skin cancer from it or not !!!
The very fact no doctor told me taking my immune disease medicine would bring me cancer is knowingly deficit of them.
They are not taking responsibility if they don't tell you at the outset !
Those left behind with nothings . . .
While there's time, before your passing . . .
Ask if they are not saying it, informing you . . . ?
This poorly situation can and does happen to any of us and you !
And modern medicine should be able to negate it !
Speak up please doctor - NOW !
. . . realise it early !
. . . luck ?
First Do No Harm - Should Also Mean Do NOT Stress Patient ( Whether doctor realises how so done or not )
I am not going to need your okay if i need to diagnose myself with ptsd !
. . . and try to get through ongoing life afterwards !
. . . still with both things above !
I have a huge amount of medical experience that lay-readers above will not necassarily understand . . .
In a support group setting this is akin to an open lesson outwards to medical staff everywhere . . .
Staff need to understand there Are No Exacts as we walk the halls with them . . .
We know our info' but it's how it comes out, and received too . . .
We are going through a tough time - while speaking !
Not so fast - thanks - realise more !
Cheers !
PLEASE Every Doctor And Nurse be completely open and accurate and speak what we need to know - immediately ! ! !
In-body experience both short/long, and accumulated lifetime details, alongside of what a doctor can tell you !
This Part Not good enough our health system.
A : I am still waiting a full year on - he still won't answer these important things even now ! ! !
I refuse to go the wrong path if i end up getting ugly cut open abdo all over again ! ! !
If he doesn't even know - he should just say that out loud for me ! ! !
Wake up please doctors - tell us people ( patients ) ! ! !
It will be akin to knowingly causing me grief ! ! !
. . . speak it properly !
. . . ?
Finally : My medical reasons and fortitude came from the one man i'd least expect given his history upon me, but it did seem on a separate level that if dad could get his fingers in around his stoma to clean it way back then to stay alive daily then i could at least do all the ones i've needed to do for my body without being too squeamish ! The rest of it is simply typing-up what i know as best practice so others who've just arrived home have somewhere to read.
Long after you have thankfully left your cancer behind you will return to looking after your crohn's, and spine, or whatever your chronic illness/s from before and throughout, hope you never gain any others !
Did my first proper wash today . . . please heal . . . please . . . !
Jeff.
. . . right now trying out a giant wedge pillow - by Bamboo ( memory foam ), wish i'd had at beginning
. . . life of combined chronic illnesses is more than most folks want to think about
. . . this page continues and shows how these are all part of Life
. . . to not let up realising how each needs attention
. . . older body issues are a continuation
Continue . . .
INVENTIONS
The following is a small project i have been thinking about over the years . . .It may or may not be of help with Rosacia, have a read first . . .
Eyewear Anti-Fogging Clipons (c) Jeff Phillips 2019.
Another one i'm trying to design for folks to easily put together is a sitting neck support.
It will be a very lite two-piece style for when summertime's too hot for the normal one.
At the moment it's in stainless steel for easy cleaning and soft shape.
I'll mention it here when there's one that's complete.
Summer Lite Style - Sitting Neck Support
Prototype works but isn't ready yet.
( you know those prices ! )
THOUGHTS
Moving through time and years your crohn's for you can change its own tactics, where once upon a time eating wetter foods to survive without pain can cause the runs, can one day become over time a help if only in the waiting for your body to arrive at different helpful stages. The more bulk type liquid foods can offer a means to pushing bolus through more successfully, not just wet bypassing harder material. It's about having faith that things will become easier. Then again, many still require to remain awake until some symptoms have cleared and finaly roll into bed at some ungodly hour of three in the morning. We all wait patiently for the danger to pass. Hopeful. Forever.
Carefully keep testing your ability to eat and drink normaly alongside your own individual lessons.
Adjust and invent food methods as you travel your abdominal lifetime.
There will never be that one singular comfort zone.
Simply a range of them you live by.
Remember them.
Always.
RE - ISSUE ?
Diarrhea : Hopes and wishes for Crohns folks...So there i was raw, smoothest toilet paper too rough, warm shower rose water the only soother...
For often the length of time it takes to get over diarrhea and the further misery crohn's sufferers can endure raw backsides before we realise a blood test is needed, before we need to wait for a culture to grow before we know whether it's a virus or bug and correct medicine to finaly stop our liquid sittings.
As you know there is only one major product for Diarrhea today...
Unfortunately it may make severe pain causing flatulence at a stricture...
The short of it is, Diastop for us sufferers was and still can be a real saviour...
Except no one makes it anymore, but does anyone really know why...?
Please can a private pharmaceutical produce it again please...?
My olde sheaf notes the following two ingredients...
...both Diphenoxylate hcl 2.5mg...and...
...Atropine sulphate 0.025mgAnyone able to begin, or restart this manufacturing line would be welcomed, truly !
Is this possible, quick easy to use tab that always got results !
All one can do is ask...
Cheers, Jeff.
UPDATE...
So it came to be that i located a company that have restarted manufacturing Diastop, but only for their own country.And it's unfortunate because there's no genuine other way, even with what i do know, to stop our issue.
Meanwhile i've been checking through existing issued medicines and there could be one.
But again, it's about checking each ingredient thoroughly against crohns.
SUBNOTE...
Apparently the whole complexion of this medicine and trying to find it has changed.
Turns out that it was being abused, much like pseudoephidrine decades ago.
Problem for us is that we suffer because there's only a substandard.
Well, my question does still remain, because it helps us !!!Please bring back Diastop as soon as possible !!!
The other is NOT serving us properly !!!
Make it a rated drug, we need it !!!
No more us suffering please !!!
( Lomotil is another )
( Including the separately very hard to find mylanta liquid version )
RIBBON
Our IBD Crohn's / Colitis Ribbon Colour Is Purple Crohns-Ulcerative-Colitis-Purple-Ribbon ( t-shirt )
REPAIRS
Quick and hopefully easy things you can do for yourself in your own time . . .Sometimes friends are unable to help us, or you might need to go through an agency to ask for assistance . . .
Often the simplest of repairs around your home can cost you nothing while avoiding added stress to get them done.
The following couple of things should help your life become more bearable while keeping your dollars ! ! !
Washing Machine Spin Repair . . . and . . . Screaming Tap Repair . . . hope those helped ?
Now you can continue your normal life without having to wait for someone to repair it.
Others including replacing a fuse or trip-switches for your power board.
Any and all things that are needed replaced immediatly.
Everyone else, please get fluid about all of life.
Hardness only serves to worsen health.
Little things along the way . . .
Go and sit with your back to the sun for a little while if you've just got home from abdominal surgery. Better ?
. . . a little on the front too
STUCK
If you feel jammed like your printer, then you need to re-focus on what you were going to do next. What was that one task or life change you were trying to complete or get to next? Forget the person who was chatting in your ear, it's not their fault - just go back to your original idea to start it up again and help yourself along in life.
Never wind yourself up, relax with yourself and your answers will come a little easier.
Get yourself back on track and put your life plan into being again.
Live well, Be well . . . read Basics.txt
INSIDE
Self : Masterclass.
This is a don't try this at home unless you fully love life article.
Mindful starts internaly, not externaly with the world around you, that's just general life. At some younger decades of ages, it pays to challenge your immune system, just at some time in the year, away from specific between dates, it's expected if you're reading this that you have a full understanding and keep a running mental log of all of how you've been and are daily, and are expected to be over the following months, including year, and lifetime generaly. Not just some guess as most of us started out in life did, well below basic. We all know how we are with ourselves daily and how we self care, and after the soothing joy when we feel our battery is low we charge it up with rest, food, activity. We follow that pattern, it's truly the best pattern over a lifetime. Once in a while, when we were younger we used our energy up on ourselves and felt weaker for it, at the wrong times, that's often where we got that throat or nose or all over a little shaking and chilled, we saw it only as a cold, but our inner selves know truth, too far. As we get older it's much easier how we do less for ourselves in this way but arrive at that same weaker body feeling, keep warm and wait a day, prepare a chicken vedgetable soup, time your body and real resources, have a little enjoyment and drop back again, eat well building your wellbeing and therefore stamina back for when actual bugs do come along, it's really only for people who appreciate their biology and not let themselves be taken away from a goal. Never just read these things and go for it, you really do need to be fully intertwined with body and self. Getting yourself a broken down system is no joke. Like i pointed out let it run just once in a loosely measured year when you're just at the best place internaly. Every other week or month just roll with careful non urgent life, a full body is not a weak one, it's your own quiet enjoyable medically safe life.
And will you feel the change inside your system, yes if all was accomplished just so.
On the other hand some years you won't, that's okay.
Mindful, no hero style.
Be well.
Note: You shouldn't need to, but if you've any poorly symptoms after refer to:
Always feed your body back with soups and medications to health.
https://www.healthline.com/health/cold-sweats
EVERYTHING
My latest fun . . .
The modern jeff, finally splashed out on an All Blacks Onesee the other day, mainly for those times when all i can do is sit in front of the box with everything going off badly. Very pleased with the warmth and got a larger size on purpose, looked at all the others like the grey bunny rabbit whatever but happy with this onesee, i don't even wear hoods but should be okay indoors, plus as you've always seen by my page i've never minded black, very nice . . . July 2020.
There's nothing worse than losing everything suddenly that doesn't agree with your crohn's stomach - in winter time. Your body is already shivering because i hadn't put the heater on, and now my entire chest muscles and abdomen is heavily bruised. The last time this full involvement happened was over thirty years ago. Summertime is a set of different things going off. Now in bed with a long body to even out the pressure, and lite abdo' massage, my hands-on healer, empty and afraid of food and sipping on a warm drink. Falling asleep for a bit helps a whole lot . . . June 2020.
ACADEMIA
It does still happen. No single person has all the care...Various information exists on all things. Never let medicine be only some academic process !
Why is it that depending on where you attend, the doctor and/or staff or individual specialist become surprised at your (apparently sudden) true interest or participation in self health? From a personal, patient, point of view the moment we leave the relative or hopeful care and protection of our parents we need to take our whole entire life's health in hand forever onwards until we eventualy pass away. What also alarms those same people is if you should be so forward as to offer what you think you require to help regain a healthy body status once again. This has truly always been a barrier to becoming better because it's predetermined only a health professional can supply the totality of all you require, that there's nothing left for you to do except take some tablet?!
Certainly, please provide a chance for us to speak at every consultation !
Our sum is worth more than the parts that make us up !
We too have a range of medical experience !
Particularly the older !
LINKS
Health information . . .
POLICY
Someone once said life was never meant to be easy, but it sure would help with a little forethought . . .
Unfortunately there is still one area in all our lives worldwide that has never been given due diligence regarding a growing number of people (patients) trying to get through their days while accomplishing all medicines. Far too often the situation we find ourselves in often through no fault of our own makes it impossible to look after ourselves.
It would be greatly welcomed and indeed helpful for all staff in all myriad areas of direct surgical and post care while in a hospital setting have a much greater awareness of the needs and practicals of multi-illness people (patients) in their wards and rooms and beds, whether pre or post surgery and during the time of their stay there with you.
One such an example of a person in this category is one who suffers with a number of damaged spine discs, a disease such as crohn's, including cancer, all existing in the one body and the resulting care they need to maintain both at home, out and about, or while in your care day and night. While we are now beyond the year 2020 most people both in family, society, and medicine are still very much unaware of the pressures on the person to maintain all three or more illnesses and still answer the requirements of others upon them at the same time.
In the hospital setting alone it is not understood how foods and medicines are best applied as it is at home where everything exists by the sufferer who already knows the best order of things throughout the days and weeks. In the forementioned hospital setting it neither is recognised upto a high level nor appreciated it as a patients burden to explain to each staff, and to actually perform in a post surgery difficulty of timing and ability along with resources to help make happen as if doing all required at home, from their bed instead.
The following is by no means a complete list, and may be added to over time, and should be read as a brief crash course on what is required to happen by the sufferer as reality dictates foremost: there are medicines required at different times and sometimes with certain foods or drinks to be smoothly taken and effective along with medicines throughout the day. All mostly achievable in between bloods, x-rays, ct-imaging and most other scenario's.
When we come in or arrive we may need to bring quite the box of required medicines and including a question or two about freely available foods and hot/cold drinks, as we are only in a new setting and need to maintain our bodily illnesses
Please do make a point of enquiring and noting the things we need to keep up to date with for our own good. The fact we know the onus is upon selves should be appreciated and worked in with what you require us to do or be.Unless extremely busy for a specialist, surgeon, doctor, or nurse, even med-students, all should be expected to be done at their cooperation. We need to survive normaly and properly every single day.
Crohn's for example is from mouth to bottom, so some of us even need to bring our own foods.
Including body support for our lifetime injuries in the way we support our bones.
Thank you for reading these very brief life maintenance notes . . .This is all about continuing our stay preparation . . .
These exist all hours of our day . . .
jp.
IMPOSSIBLE
Basics of life : There IS NO greater solitude sometimes in life.
People will be people : They surely will be themselves. Difficult times calls for your heavenly angel self to take over, even in the face of very greatest sickness, it does still fall upon us to take the upper ground. Earlier i mentioned how you are best asking for peace alone when very unwell, from all the hustle and bustle around the house. But sometimes that may not work out. When the going gets to it's worst for you, and there's an immovable human nearby. So long as you indicate early you are feeling VERY ill, you should be able to trust in other people to not bother you. However you will undoubtedly come across this worst case scenario one day, even if it's just the once. People who actually scream back at you when your'e in your most difficult of failing body organs and pain places looking for peace are actually selfishly believing it's just another arguing moment in their version of an apparently normal daily life, when it's very far from it. It's not actually yours to need to apologise. They are perhaps yet again proving they have no idea that other people go through in massively difficult times, no idea what empathy really actually means or involves from their side of life. They may also get louder at these times, even pushy in their wants from you, even though you're very sick, it's best to just stay on your own even keel and not say anything further to help yourself get through your terrible health situation internaly. Simply let your real symptoms, no matter how physicaly revolting or visualy icky they are - like throwing up massively, or body all over the carpet, and all it's sounds, be their sole visual recognition of what your'e going through. If they still don't understand after such sights of difficulty then you need to seriously think about having a seated chat when this is all over for you. It's absolutely multiplying in it's effects upon you when your body is going through torment to never let it happen again. Let them know they can help most by being calm inside them in your moment of need, that it isn't just any old day today. They need to change their attitude so you have better far reaching faith in them to be considerate. Full enduring balanced kindness and aptitude to help in just the right ways at the worst of times. Lastly, if this is still not going to be possible, you may need to make changes to your life to avoid them, much longer term. Explaining doesn't always get through. It's for your own best. People can unfortunately be unecassarily formidable when you just need a friend. Move on if they can't or won't.
Over the decades, individuals everywhere have needed to deal with ingrained situations...
Remember always, you owe it to your body to survive, foremost !
Find and rely on your inner repair strengths !
Try genuinely first !
RESOURCES
Sometimes URGENT needs to wait...Resources are everything you have at hand to live...
People expect you to do / get everything correct whatever age...
As told of us to others is not the full story of our lives for you to read within...
The ability to pay for, the ability to physically accomplish, long before present willingness to...
As older people we might find it harder to do, with every moment of that in the face of those who have no clue yet...
Every day we each do absolutely everything for ourselves from the moment we get up to going to sleep including a few overnight things and including any emergency we may need to deal with before hopefully getting the rest of our sleep. The more we can prepare our mindset and internal body abilities along life's whole entire way the more we will travel and enjoy a few good and interesting things and the further we will go, it just needs us and others to recognise only sometimes do we have the actual resources needed for the timing per a weeks pay to purchase or attend what's required of us by others.
When we go online to start finding and then purchasing we may need to signup to a sales site and then soon progress to realising a part of our purchase cost goes towards an agent that ensures everything goes smoothly all the way through the many various parts of having something desired, wrapped, labelled, sent on its way to use, the sometimes thousands of kilometres travel by van then truck onto plane until it arrives in your own land little by little up to actually recieving our parcel for us to enjoy. As we travel through the sometimes long arduous years and much longer overall decades we come to realise the various ways we have been making payment with our minds and bodies for our life that we live has actually more meaning as we appreciate the number of years we need to keep this going if we are to realise a happy older age passing into retirement that a few limits slow us. I still remember once identifying with and then writing that 'no one gets out of life free' many decades ago and using it as a stepping point to showing how we all need to be wary of what we're using up of our very selves and very possibly having nothing left to go on with to the end years, literally meaning we can end up stopping early, whereupon i re-wrote it as 'no one gets out of life alive' which is a reflection on how our minds can have thought all manner of literally everything and defended our existence for decades too, without any let-up from the world around us, but surviving. As we travel through life from the simplest bruises and scraps as children, to the loss of some part of us mental or physical and surviving to live yet more years while doing and forgetting and very eventualy repeating or finding our way through new but familiar iterates we similarly get by with what resources we have inside ourselves, we come out of each one with a deep sigh and glad to still be metaphorically breathing. With some of those parts of our lives being and one or other of love, work, living, finance, or perhaps a chronic health issue we put more energy away for or focus on accomplishing life alongside with the dropping of some other part of our interests, we console our selves as simply a part of life. We are okay with this. And by and large over our time here we can acquire a few other health issues that hold us back from long term interests, and one day out of the blue we are required to urgently visit an ED at our local hospital, to have one of our issues that has since become very active seen to, all the while witnessing a friend or aquaintance going through their own life matters and seeing how they're coping too, comparences. Along the way hard internal lessons make us realise it isn't any longer easy to just get in our car to go park in hospital parking from the associated cost or seeing a specialist that will help us down yet another path of managing an additional illness atop the two we are only now getting used to and managing better can certainly make us more tired daily, multi-chronic issues as a total creep upon us unsuspectingly over many years, some starting many years before, and all needing our attention in these later decades when we actually have less ways and means and energies to thwart them or even make an appearance. The reality sooner or later comes home to us that we may not have the stamina after too many issues to front up any old time our friendly and well meaning doctor helpfully points out something really is good for our welfare. The difficulty by then is of explaining how we are slower now, need to pack a bag of medicines and clothing and other essentials for us to make any such journey whether once-off or regularly to perhaps a helper clinic. And thus we despair and try pushing on as a last resort to do well by our body and show we can. But sometimes the very nature of what we have works against us, a car journey moves or even shakes our organs to a state of unwell, along with the jostling of our older bones. And for those who are long in the tooth and well versed in their own work and thus eventuating medical history can become tired in the much longer sense of going and doing the same things over and over again, a continuance of our longevity, we order our package and take it home to live another day, happy that we got done but only just this time, and what if anything else comes along, can we cope by then with so much being required of our standing orders mindness. We are far and away from what was our own specific set of young all the way towards midlife years by now. Acceptance was started long ago and begins to wane as time grows longest. We wonder why people around us feel vocaly we have the same abilities as their younger selves, that have they not thought ahead to the realities yet, what message is lacking making it's way through to them daily? And at some point we are forced to decide outside of our wanting attitude to say we cannot do the hard yards any longer, that there must surely be easier ways of accomplishing something for our own physical help than say visiting an ED miles away when we no longer have the resources to pay for the petrol to get there, or the almighty requirement that our past personal energy to organise has all but vanished because of one of our realisations perhaps by our aching bones simply won't any longer see us right anymore. The literal over domineering theme being human exhaustion and the severe discomfort of travelling the journey there and the hours waiting and then back just simply becomes no longer possible. For we no longer require accompanying voices to give suggestions as we know all the variables. It becomes one of a life preparing to live with what one has in life and living with it no matter what the daily draining challenges that no others see crossing between and back over the two or three illnesses. We have all to make up our minds this is not as good as it gets but as bad as we have to survive it out, now. Our each reality to the end. I would strongly suggest avoid recognising your path as long as possible, bliss it won't be and hoping doctors and staff don't go sending you on a round trip to nothingness, and knowing to never ask you to, as it may be your last effort of exhaustion, ever.
IF you cannot do something today then let whoever know so that perhaps an alternative idea can be realised to help you for the same end goal over time. We are truly just human and cannot be expected to last forever with illnesses.If you like me face weekly or momentary health challenges then please be at peace in your world.
There will be another day tommorrow and hopefully all you come across will be bearable.
Decide to not force yourself past discomfort and into a very terrible situation.
See a person collapse / remain seated from fatique and you'll know.
This has been a later life insight for those who disagree.
Please know all people have their own.
Thank you for reading.Be well.
jp.
FOREVER
It wouldn't have mattered what i was doing, some things you have to just drop your whole life for . . .
And that will never change, if it begins attacking again i simply need to stop and pack a bag for another trip . . .
Some ailments are unfortunately forever. During one of my flare-ups I needed to go to ED, and while there in the waiting room i overheard a conversation unfolding just like the one i had years before. Same place same problem another person. I felt like saying to her all the things i had learned since my beginning and that everything will be alright. That life will go smoothly again one day, just not for a while. No point saying it of course, it was just a wish for the best.
Keep a proactive healthy life, stay on top of each problem that comes along, don't be over active, nor let things slip . . .
And don't forget to take all your medicines to hospital with you, they don't know your normal life each day.
And then some days they find a new thing, and a new medicine starts, and it makes you sad.
Today I donated a bunch of tinned foods I can no longer eat to the needy folks.
Keep and Update your list of Illnesses and Medicines always.
That means an honest account of how you are.
Jeff Phillips, 24 / 5 / 18.
p.s :
As I walked around the ward pushing my drip for exercise I continualy told myself - heal for now, think about it all later.
For most it's a first time, for others it's a profound understanding what you knew has finaly arrived in full force.
And doing the things you enjoy in life means more than any other thing that others can throw at you.
I wonder if daily authority figures understand that small chunks of tragedy happen to others.
And to not blame those who are busy trying to get better of things not possible.
Or having to cope with three massive problems all at the same time.
In a better life I would dare you to go through the same.
Can you guess what my body goes through.
What people think I have in my life.Or how one cries for self.
No, no jar thanks.
p.p.s :
My other one . . .
The ones that completely freak you out . . .Once in a while i DO expect to have ever bigger health issues . . .
. . . it's just that it doesn't get any easier . . .
. . . very little pain just coldness . . .
Most know I have longer hair, while simply doing my hair tonight before dinner at fiveofive my neck
made an absolutely terrible sound and the bones almost went sideways, i literally had to quickly
push in half way down on the right to get it straight again, all in the moment i'm staring straight
into the mirror and listening to see if i got it right, quickly threw my brace back on, but then
there was an odd empty throat type feeling so chose not to eat just in case.
I have a known situation and i look after it but this was seriously terrifying ! ! !I'm quite seriously speaking it out NO NO NO NO ! ! !
PLEASE NOT NOW IN MY LIFE PLEEEASE ! ! !
Now sitting typing this as upright as i can be.
VERY VERY SCARY ! ! !10 / 8 / 18.
[ jeeepers!!! ]
. . . trick's to stay verticaly straight all over no matter what !
. . . it's a bit advanced, so i just cry wondering
Now my stomach proper is just feeling shaken and scared
. . . trick's to always stay as calm as possible
still got to get to sleep later ?
Jeff.
Calm : Is when you drop 300 really important tablets all over the carpet. And it takes you forever to pick them up.
. . . becoming more painful as you go !
COMMENT
Political Comment :
This section hopes to resolve Medical / Policy issues during these times living with severe illnesses...
A few of the items may make their way here from a separate more general commentary page...
They regard life where people live daily with multiple chronic health diificulties...
Conclusions arrived at are suited to the unwell, not the able...
Furthermore they are disease based items...
Not simply a broken leg...
It's hard to leave THEIR history behind . . .
Previous corruption is an issue . . .
Distrust is like this, folks . . .
When damaged before . . .
And over again . . .
|
WELFARE : Where Is The Service 2022 . . . ?
Slipping away, or really looking after the painfully unwell . . . ?Long before any red light setting many of us were doing all the correct things...
Why has welfare not putting more case managers on this time of the year...?
Seymour should be asking these types of questions instead of picking !!!
Help folks like us deal with the normal Annual things first / as well !!!
Nothing to with covid payments or whatever just normal welfare !!!
We should NOT be needing to wait for a 1 in 3 phone calls !!!
Any all of which we may miss because of our illnesses !!!
Needing to ever rest extremely important part of life !!!
Sometimes helping others with sickness too !!!
And if one does misse THAT call, well ???
Most likely end up getting blamed !!!Tune in to diseased needs !!!
January 2022.
|We have to prepare just to sit there...
Your requirement for us to wait stops us starting the new year !!!
From the Unwell perspective the Callback system problems are obvious but have not been addressed at all...
The year has now already started and we NEED to make financial plans for our year ahead to help us...
We can't do anything to help our health inside that whole week of days still waiting to be heard...
Compared with a firm Appointment date, we have to wait a stressful unknown gap in time...
Any noise away from waiting at the phone means we cannot get our chores done...
Most people with chronic health issues are tired and need help sooner...
After there's still no call days later we reasonably have stress...
Meanwhile others need to use the phone too...
Then wonder if we have missed out...
Completely unfair !!!
Older !!!
|
We're not fit and able like the young unemployed types . . .
How do you expect us to sit there for the ' 70mins ' you tell us . . . ?
PLEASE JUST GIVE US UNWELL A NORMAL SIT DOWN SURE APPOINTMENT !!!
. . . without falling asleep or needing the toilet and other things . . . ?
. . . please help our lot in a more timely manner please !
|
Dear Prime / Welfare Minister, i'm in waiting to get up in pain for the phone . . .
A better phone system would also inform us of the Minutes Remaining before our Call !
. . . better reality, why can we not yet have this idea like other companies use ?
|
[ ...this is exactly the type of reason it stressfully makes us yet further unwell ! ]
[ ...exactly why labour should have scrapped national's welfare nastiness ! ]
[ ...no good enough reason to keep those recommendations waiting ! ]
[ ...cannot get things done in a timely manner beforehand ! ][ ...cannot lead our pain existence waiting for you ! ]
[ ...outsiders just don't get our difficulties ! ]
[ ...why do i have to beg here ? ]
|. . . and lunch time !
And then we go picking up the phone to see how long still, damn, Call Us !
. . . and dinner time !
|
{ ...please help us folks keep living too ! }
{ ...not soul destroying us ! }
{ ...waiting stress ! }{ ...again ! }
|
I AM LOSING SLEEP !
|
( ...seriously, there's a disparity, you don't mind checking on us, but you can't get help done ! )
( ...rest of us are not the unemployed group which should never have been added to ! )
( ...makes us forever more wary and tired of your internal unspoken culture ! )
{ ...please stop seeing life as a challenge you must give us ! }
( ...you simply do not seem there for us ! )
( ...no real felt empathy ! )
( ...unfeeling ! )
( ...path ! )
morethanarockandahardplace
betterbodylifeplease
neveraskedforthis
painforever
- and please stop requiring device numbers to send confirmations to -
- its completely fools folly when it gets lost or stolen -
- only registered number on record, stupid -
- cannot get into your msd -
- security gone -
- even then, have people type it in -
- NOT phone a human with it -
...btw, pretty ironic if your call waiting music includes an ' ...if you're stressed ? ' service plays...
...imagine how their damage still feels on this side...
...trust is a lasting issue...
...forever !!!
{ ...only those without a soul are able to walk past that one ! }
{ ...don't worry about it i hear them say aloud ! }
{ ...wait till it affects their living life ! }
{ ...then we'll see !!! }
torturous
reallife
{ ...update : after a great deal of more vacant time waiting it appears i may have an opportunity to actually help the hurting ! }
{ ...i will be having a rare moment to speak for many of ours so that this is made more bearable in future ! }
{ ...i'm spending the rest of the evening preparing for that occasion, wish me luck ! }
{ ...seriously, because making things better is difficult ! }
{ ...ALL life is important steps ! }
{ ...update : after yet more waiting time and where even the music ran out and stopped, i needed to hang up ! }
{ ...rather, I travelled along with my severe pain to the meeting instead, which helped highlight this ! }
{ ...i'm back, still in pain, so briefly for now, our unwell section of society Can have, }
{ ...a seated, even if a few meters apart, our major meeting of the year ! }
{ ...also confirmed was i could echo this amongst our unwell ! }
{ ...i'll write more after my flare-up has gone ! }
Very briefly for now...
Unlike an open variable number of days waiting at phone, while sick, for their callback...
A fixed time appointment is definately easier on our very sick bodies, we can prepare to arrive there !!!
Help your body properly, Ask for a seated appointment please ' at the time ' of physicaly handing in your forms !!!
NOT Later over a long 1 and 1/2 hour phone wait to get through !!!
Ask then, at their Office, only !!!
...You ARE allowed to !!!
. . . i really felt i needed to step out even with severe pain this morning . . .
. . . i guess it's better if they see one of us like that too . . .
. . . best we can hope for, please ask for this . . .
. . . we live in nasty ugly pain days . . .
. . . ask for a note to be added for next time, too !
. . . arrange next time at your appnt only !
. . . far better for your sick body !
. . . resolve per person !
. . . i'm off to get serious pain relief now . . .
. . . notes to complete here . . .
thebiggesthurdleispeoplenotknowingeachhardpartofadiseasedayweekmonthyear
andthenknowingtheresmorethanonediseaseinsideonehuman
howthosecometogethermakinglifeimpossible
sometimeswewanttogiveup
beforethenormal
problems
...end
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