you are still disabled
your struggles are still valid
just because you arent sick all the time, it doesnt mean you arent sick.
just because you dont have many limitations, it doesnt mean you cant vent about the limitations you do have, because if your illness takes away even one experience/ability/feeling from you, its already taken too much.
dont let people invalidate you because you arent as “disabled as you could be”, because you are disabled, come @ them if they try to tell you youre not.
dont feel like you shouldnt be upset that you have this illness, just because it doesnt always affect you, or doesnt constantly affect you, it doesnt mean it doesnt affect you.
please dont feel like you have to constantly prove youre disabled, and if you do, remember that you are disabled, and you do have hardships and that you deserved to be believed.
I am so sorry you have to go through this, you shouldnt have to.
and above all
youre important and your issues, whether they be small or large, are important.
you matter.
reminder
So, the stick is back in use, at least for now. I’m finding my middle is very sore throughout the day and using my stick to move around when not at home helps take some of the strain off my muscles. It also gives me a little bit of security in that I know I’ll be able to get home eventually with it. Whereas without it, I’d feel stranded if I found walking too hard.
It sort of feels like I’ve taken a couple of steps backwards but I know it’s not something I can control. That doesn’t make it any easier to deal with, but I’m dealing. I hope.
Proper update
Ok, so let explained what happened yesterday; after I got to the hospital, I had bloods taken and a cannula fitted before being moved into the AAU (Acute Assessment Unit) where I experienced a major flare of pain in my stomach. They gave me oral morphine (which tasted like fruity vodka) but it didn’t seem to do a lot so a little bit later a nurse came over with two syringes of IV morphine which she gave me little by little. This helped to numb the pain enough for it to be bearable. They then took me for both a chest and abdominal x-ray before taking me up to ASU (Acute Surgical Unit). By this time, the pain had gone down enough for me to have a shower and change my bag but I was nil-by-mouth in case they needed to do surgery for any reason. I did notice my stoma was protruding more than normal but it seems to have gone back to normal so I’m putting that down to muscle strain.
Eventually, the doctors came round and I was seem a whole three times! (And on a Sunday too) They checked how my stomach felt and decided that I needed an ultrasound. They booked it for this morning but said I could go home provided I wasn’t in too much pain. Thankfully, the pain went away with the morphine and I’ve been given dihydrocodeine to take home.
The ultrasound was to check it was gall stones, which they’d remove if needed. And if it wasn’t my gall bladder, then they’d check for inflammation in my stomach. As it turns out, they actually couldn’t see my gall bladder because my liver has somehow become twice the size it’s meant to be, which would explain the pain. The consulting surgeon I saw after the ultrasound said he would refer me to a liver specialist but to take it easy in the meantime.
My boss has been amazingly understanding, as usual, so I’m taking the rest of today off work to rest my sore muscles.
I’m hoping this’ll be easily fixed and not affect my stoma or interfere with future surgeries.
Just a quick update.
I’m out of the hospital! I didn’t need to stay overnight but they do want me back in tomorrow morning for an ultrasound.
They think it’s either my gall bladder, an inflammation in my stomach or a sprained abdominal muscle. I’m hoping it’s the latter but we’ll see.
Well, that didn’t last long. I’m back in the hospital, admitted through A&E around three this morning, with severe abdominal cramps and vomiting. They’ve given me morphine for the pain and an anti-sickness that seems to be working at the moment. I’m nill by mouth at the moment because they’ve put me in the ASU (acute surgical unit) and they’re not sure what’s causing the pain. I’m just waiting for the doctor to come see me.
It might be too soon to really tell, but I tried cucumber (without the skin) this afternoon and, finger crossed, I haven’t had any negative side effects.
I’ve been told to only have very soft, skinless/seedless fruit and veg for now as it digests easier in the small intestine. I haven’t been eating much fruit or veg since my surgery but I am starting to reintroduce them one by one into my diet again.
So far, bananas, potatoes and strawberries are on the ok list and I hope to add cucumber to that list too.
My support belt arrived the other day so I’m giving it a go and wearing it to work today. It’s not that I’ve been advised to wear it a lot but I’ve found my stomach muscles hurt in the afternoon/evening if I’ve been working or just walking around a lot so I figured I’d try wearing the belt to see if it helps.
Surgery #2
So, I saw my new surgeon last Thursday and I think it went quite well. He explained everything that has been done already and what happens to form a J-pouch. He also reassured me that I can go back to an ostomy if the j-pouch doesn’t work out.
Apparently, they usually wait until six months after the initial surgery to do the next one but I said I’d rather wait until next year. I have another appointment with him again in December so I’ve got plenty of time to decided when I want to go for my next surgery.
I was thinking April 2018 but after speaking with my boss (who has a similar condition but hasn’t got a diagnosis yet), I think I’d rather do it earlier. She recommended January because the weather in April will be warmer which could effect my BM; the last thing I need straight after surgery would be complications because of the heat. I’m going to take a little more time to decided but I agree that earlier would be better. I found that over winter last year I could (sort of) control my UC symptoms a little better with heat pads, despite the meds I was on at the time not actually working without the assistance of pred.
Also, if I go ahead in January, hopefully all my surgeries will be over by April/May. My surgeon said they usually wait at least three months before doing the final surgery that’ll remove the blob.
It feels a little strange to think that I would have gone almost a year exactly from diagnosis to surgery and then another year from first surgery to final surgery. I’m a little excited; part of me wants to say “no, don’t wait! Get it over with!” However, I don’t want to be in hospital over Christmas so I think it’s worth me waiting until the new year.
I did a bit shopping today and, among other things, I bought a new dress. It’s nice and comfy, and it covers baggie without squishing it or making it hard to empty.
It’ll be ideal for when the weather turns cold but still good for summer.
Despite having to give Zynaida (one of my furbabies) playtime at 3 o’clock this morning, I’m not as tired as I thought I’d be. I’m currently on my way to the hospital for a consultation with my new surgeon. Hopefully, we’ll just be forming a plan of action today. My other surgeon said he didn’t want to do anything until next year which is fine by me.
I’m also going to have another blood test to see if I need more iron infusions.
What Can I Eat 