10:08am May 29, 2015

autism problem #183

dendriforming:

chavisory:

autismproblems:

when people think if they carefully explain to you why being disabled is socially inappropriate, you will stop being disabled

It extends far beyond the “socially inappropriate” reasoning, too.
If you just understand well enough why you have to do this thing, then you will be able to do it, is some of the scariest reasoning of medical personnel that I have ever encountered.

Yes, this.
And at least in medical contexts, this increases the more disabilities you add in (or the more things your disability affects). No, I can’t stop being developmentally disabled just because it’s outside your specialty.

“No I can’t stop being developmentally disabled just because it’s outside your speciality.”
Oh. Those are the words. Thank you.

The most dangerous “outside your specialty” one I ever encountered was when I wasn’t yet diagnosed with myasthenia gravis or adrenal insufficiency. My mom was literally about to be diagnosed with myasthenia gravis while I was still in the hospital. I was about to be diagnosed with gastroparesis, but even that hadn’t happened yet (it would later on in the same hospitalization). I’d been hospitalized for pneumonia so bad that even my friends could sense death hanging around in the room – one of my friends took one look at me on a video chat and burst out crying, and then told me to go to the ER immediately.

So I had pneumonia, and that’s what I was admitted for. I was put on a cardiac ward as overflow. Cardiac wards are generally pretty quiet places, I’ve been on them before for actual cardiac reasons. People there may be seriously ill, but it’s not generally messy, violent illness. They put me on medications that, combined with the undiagnosed gastroparesis, had me vomiting so constantly that they moved my roommate to another room so she wouldn’t have to hear it. Then they closed my door so they would have to neither hear nor respond to it. They were cardiac people, they didn’t want to deal with vomiting, so they just… didn’t.

Myasthenia gravis means that as you use a muscle, it weakens, often dramatically. The muscles used in throwing up are remarkably close to the muscles used in breathing, which were already overworking from the pneumonia. I started breathing very shallowly and my oxygen levels went way down, but they refused to put me on continuous oxygen monitoring.

Meanwhile I was heading into adrenal crisis, which causes a severe overall physical weakness. I became too weak to get out of bed, too weak to roll over onto a bedpan, eventually too weak to move. I shat the bed, and because I had a developmental disability, their response to this was not “OMG you’re really sick we should look into this,” it’s “You shouldn’t get away with that, because if we let you shit the bed you’ll get used to it and never want to use a toilet again.” Which just added insult to humiliation.

Just before I got too weak to move, I curled myself up on the bed in a really weird position. I lifted up the top of the bed as high as it would go, and then I curled up so my back was facing the top of the bed and my face was pointed downwards. I reasoned that this way if I threw up I’d be the least likely to aspirate. It came in handy. Given that nobody was willing to clean me up, let alone help me stop vomiting.

At one point I heard a huge commotion in the hall and then a voice shouting “IF YOU KILL HER I WILL HAVE EVERY LAWYER IN BURLINGTON ALL OVER THIS PLACE!” My DPoA had sent her staff person, a cancer survivor and survivor of that hospital (which does have to be survived at times, because they’re as likely to, deliberately or inadvertently (it’s really hard to tell malice from severe incompetence sometimes), kill you as the illness is on some of the worst wards), come up to check on me. What she found was that they’d shut my door so they could ignore the puking. So she’d throw it open and they’d shut it again and after awhile she started screaming at them and that’s what I was hearing.

I went delirious shortly after that and don’t remember a lot of reality.

But one thing that happened that was utterly horrible: My first hospitalist got into an argument with my DPoA. My DPoA said I belonged in the ICU because the severe weakness combined with the nausea meant I needed a level of vitals monitoring that didn’t exist in the cardiac ward. The hospitalist told her – and I vaguely remember the conversation – “She came in for pneumonia. I’ll treat the pneumonia. That’s all I need to treat. I don’t really care what else she has or whether she’s been eating or any of that. People have survived pneumonia without eating just fine.” (I’d been either not eating, or eating only broth and crackers, for about a month before I came in, and had lost about 40 pounds. But because I was still fat, they didn’t believe me until they measured my weight, later, themselves. So he ignored how long I hadn’t been eating, and treated the “not eating” as if it began when I entered the hospital.)

My actual doctor, who wasn’t there at the time, tells me now that I not only belonged in the ICU, but that I’m lucky to have survived that first few weeks of that hospitalization at all given how little support I was given. I really needed steroids, breathing support, Mestinon, and constant monitoring, but I didn’t get any of those things. I knew I was near death, but I was lucky enough to be just far enough outside the event horizon to claw my way back to life with nothing other than stubbornness. But I was also close enough to death that if I hadn’t been fighting to stay alive, I would have died easily, and could have died easily, without anyone knowing I had a choice in the matter. There’s a weird limbo zone where you do have a choice, and I’ve encountered it more than once in these situations.

But yeah. “I’m only treating pneumonia, I don’t give a shit if something else kills you” is the worst sort of this thing I’ve ever gotten. When it was pneumonia, gastroparesis, myasthenia gravis, and adrenal insufficiency. I don’t know why I’m alive, because this sort of thing has happened more than once, although that was the most blatant example. My doctor isn’t quite sure why I’m alive either.