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Hospitals and Long Term Treatment: Chronic illness thread
Munkus Beaver
You don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
You don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
Ok, there have been a few threads recently that flirted with this concept, but I would like to offer a safe haven for those who have Chronic Health Problems. Not Mental Health issues or Hypochondriacs or those who 'get sick' and proceed to 'get better,' I am talking about those of us with physical conditions that we live with and try to 'placate' in the long term.
Because for us there is no real 'cure' or 'getting better,' there is 'remission' and 'flare-up.' If we feel depression, it's not due to brain chemicals being goof, it's due to the crippling physical pain that saps strength. We are those that go to the hospital and know more than the doctors do unless they are specialists at the top of their game. We have been around the block and know when a doc is lying to make you feel better, rushing to get you out the door so he can deal with an easier patient, and when a doc is actually taking his time because he gives a shit about what happens to your ass.
So let's share stories and updates on these lifelong conditions of ours. I've got a few stories, but I'll start with a brief description of my condition and an update on where I stand.
Munkus Problems:
Crohn's with the complication of a Colectomy (I had my colon surgically removed because they were sure I had colitis, they are wrong in these scenarios about 10% of the time apparently).
Dealing with Crohn's since I was 13, so about 13 years of Crohn's or about half my entire life. Crohn's also causes/is related to my other issues (anemia, arthritis tendonitis, psriosis, chronic epdidymitis, fistulas)
My update is that I have a slowing fistulazing tract causing enormous pain which is too close to operate at the places I've been but close enough to cause FUCK FUCK pain. Doctors think I am lying or seeking drugs, I put on a strong face for my best friend but this most recent visit colapsed and I am now hoping I get to go to the hospital because holy fuck it hurts. I just want an end to this endless parade of suffering and misery. I have few things, books or games, to keep my mind off. When I try to play the games I want to play, the pain sucks the fun out of it. So I don't know, I am at wits end and am trying to lose it. I haven't been around much here due to pain. I haven't kept up my social life due to real pain.
tl;dr - My update is that my Crohn's is winning the battle and the war against my body.
How about you, fellow chronic physical illness sufferers? Let's compare scars and war stories, vent about doctors and other such bullshit, share updates and reveal our sordid past with our diseases and cancers. Let's talk disease! Hospitals! Pain! Walking it off!
Because for us there is no real 'cure' or 'getting better,' there is 'remission' and 'flare-up.' If we feel depression, it's not due to brain chemicals being goof, it's due to the crippling physical pain that saps strength. We are those that go to the hospital and know more than the doctors do unless they are specialists at the top of their game. We have been around the block and know when a doc is lying to make you feel better, rushing to get you out the door so he can deal with an easier patient, and when a doc is actually taking his time because he gives a shit about what happens to your ass.
So let's share stories and updates on these lifelong conditions of ours. I've got a few stories, but I'll start with a brief description of my condition and an update on where I stand.
Munkus Problems:
Crohn's with the complication of a Colectomy (I had my colon surgically removed because they were sure I had colitis, they are wrong in these scenarios about 10% of the time apparently).
Dealing with Crohn's since I was 13, so about 13 years of Crohn's or about half my entire life. Crohn's also causes/is related to my other issues (anemia, arthritis tendonitis, psriosis, chronic epdidymitis, fistulas)
My update is that I have a slowing fistulazing tract causing enormous pain which is too close to operate at the places I've been but close enough to cause FUCK FUCK pain. Doctors think I am lying or seeking drugs, I put on a strong face for my best friend but this most recent visit colapsed and I am now hoping I get to go to the hospital because holy fuck it hurts. I just want an end to this endless parade of suffering and misery. I have few things, books or games, to keep my mind off. When I try to play the games I want to play, the pain sucks the fun out of it. So I don't know, I am at wits end and am trying to lose it. I haven't been around much here due to pain. I haven't kept up my social life due to real pain.
tl;dr - My update is that my Crohn's is winning the battle and the war against my body.
How about you, fellow chronic physical illness sufferers? Let's compare scars and war stories, vent about doctors and other such bullshit, share updates and reveal our sordid past with our diseases and cancers. Let's talk disease! Hospitals! Pain! Walking it off!
Humor can be dissected as a frog can, but dies in the process.
Munkus Beaver on
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Here until I go to the pain clinic and work out something intense.
I hate my life. It was jus salt in the wound that the day before I went in, my friend got in the blizzard MOBA beta right before my eyes. He was visiting, but with me in the hospital he cut it short and is gone. I will be here til Thursday when they will send me to the pain clinic to find a solution to work until I go to Mayo to hopefully have this fixed.
That sucks Eddy, I hope your boss was okay with you being late :? .
Skype?
My four year old niece tripped and took a face first header into a sharp point of molding earlier tonight and had to get four stitches right in her forehead between her eyes... We like to start them on head injuries young
if you have an ovarian cyst it can torse, causing the blood supply to be cut off, requiring emergency surgery to fix it
other incredibly painful things in that area include ectopic pregnancy
also constipation
basically what I'm saying is that sort of pain justifies a visit to the doc
Well I'm at the ER now so don't worry I ain't dumb. So far ultrasound didn't see anything but they're gonna give me a pelvic. It could also be a kidney stone or something so who knows man.
lots of small cysts consistent with pcos being a shithead but no large burst ones, but "well you do know you have a UTI", no I didn't, so three days of cipro and some lortabs. wondering if my humira is making me get utis/kidney infections way easier bc I'd never had one until I went on methotrexate and now I get 1-2 a year
Cancer, currently stage III-IV, depending on who you ask and how they view it. I have a constricting spiderweb of cancer from the bottom of my stomach, all the way to my colon. This causes extreme pain and gastro-intestinal issues aplenty.
Also, http://http://en.wikipedia.org/wiki/Diabetes_mellitus_type_1 , the "bad kind". The kind that doesn't result from being a fat American. The kind you can't fix with "diet and exercise". No, your prayer-chains and super-cinnamon won't do a God-Damned thing but piss me off.
Now, remember the cancer? yeah, that prevents food from properly absorbing into my system. Guess what gets really picky and acts like an absolute asshole about carbohydrates entering the bloodstream? Diabetes.
Guess what happens when your Diabetes is so wacky and fun-filled that your sugars are in a perpetual dance? http://http://en.wikipedia.org/wiki/Diabetic_neuropathy !! My nervous system very literally, very slowly, over time, and in a very painful way, short circuits and dies.
Now, are you still playing along at home? I hope so because now it gets fun.
Guess what really, really requires clear nerve signals in order to effectively work? Your circulatory system! That's right. So when that starts breaking down, what happens kids?
http://en.wikipedia.org/wiki/Stroke !! Yaaaaaaaay!!!! It's an awesome one-two punch from the universe that not only are you doubled over in pain, crippled, and slowly rotting, but now you randomly black out, shit yourself, and forget entire days.
I think that about covers it. In the end, I shuffle along like anyone else.
Please walk it off.
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Yay.
That means you get to give them all your health issues, right? Since they're now you.
I'm not sure what that means, but my guess is it's related to how my right hand is full of blood like a balloon.
Look unless you're volunteering to help don't criticise my shame business.
Look 50% of the words are accurate.
I'm kind of amazed they could get a hand fistula to work. When I first got one, the surgeon was like "yeah, it only works about 10% of the time, but we always try on the wrist/hand first"
And I ended up being one of the 90% so they had to do one in the upper arm anyway. But this way they get paid for two surgeries instead of doing the one that is likely to work first.
-Indiana Solo, runner of blades
My mom is not allowed to get cancer. She's just not.
(been there, it ultra blows)
Oh, no, sorry for the misunderstanding, mine is at my right elbow.
It just has tributaries running into my forearm, so there's decreased blood flow back out of my hand, or increased into it, or something, and they're not comfortable undoing/fixing/tying it off until maybe later this year or next year.
@Stale @Munkus Beaver I love you dudes, even if we ain't super duper close anymore
Hugs, dude. The stress of waiting and not knowing must be awful.
Oh Jesus.
So it's an embolism? Filled with blood? not because of an IV that was infiltrated?
One of the sharpest pain memories I have was from an embolism that formed because of a major error on my nurses part in giving me an IV that was unsuitable for putting contrast through.
So it infiltrated the moment the pump started and I had a huge amount of contrast pumped there, took forever for it to go down.
But if I recall, it was my 8th stick and they were just taking my advice, since a 22 is easier to thread the vein on my arms, but I had no idea just how unsuitable it is for receiving contrast.
I generally ask for 20s in my legs at this point, my arms are just wasted out veins.
Sorry again, sometimes (both here and in RL conversation) I forget that not everyone knows all my medical stuff because it seems so second nature to me, so sometimes I don't explain things properly.
What I have is a hemodialysis fistula created at my elbow, so they have connected an artery to a vein there to create much stronger blood flow in that vein to make dialysis easier, as a result of it misbehaving slightly some veins further down into my forearm are enlarged and my right hand has extra blood that is slower to move back out of my hand. The only real discomfort this causes is around the level of varicose veins (according to the doctors) and even then only sometimes, so an moderately strong ache that makes me somewhat unwilling to do anything that requires effort or movement from that arm.
Helpfully this was created pre-emptively and never got used, but even a year after the transplant (P.S. not one of you wished me a happy Kidney Day last Sunday, you monsters) they are unwilling to surgically get rid of the fistula (most common term I've heard doctors use is "tie it off") because of the concern that I may suffer rejection and need it after all.
Seriously. It's kinda fucked up when you have doctors going "Yeah, you need surgery. Badly." then: "Oh, but I would not be comfortable doing it." followed by: "It's not life threatening, it's only pain."
I don't think I will ever forgive them for saying that. I mean, I understand. Fistulalyzing Crohn's. You cut, you cause strictures, scars, and fistulas. Currently it's a tract that is burrowing and drains into a small abscess that is sooooo close to the intestines that it makes many people nervous about approaching it.
But I find it weird as shit you have a fistula on your arm...and they aren't doing anything about it? That's like...put a seton or a drain or even just excise it.
It's probably not until next month in upside down land place anyway.