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6:04pm January 20, 2013

Okay update for feliscorvus and stuff

Ignore if you don’t like medical litanies.

Usually things get worse a couple days before antibiotics work.

I am having problems with brain drift. Huge ones. And weird drifty hallucinations. Think that wouldn’t happen if I hadn’t been not-fully-recovered from delirium though. Like this isn’t bad enough to generate hallucinations by itself. Only added to residual delirium can it do that.

It’s hard to think and hard to move. Feel really weak and tired.

On the good side, no fever, oxygen levels are decent.

Heart rate sometimes bad from dehydration. Trying to drink a lot. Wouldn’t have even thought of it if the oxygen meter didn’t also measure pulse.

Breathing sucks. Er pun not intended. Feel stuffy and like its hard to move air in and out. And hurts a lot. Not as much as bad pneumonia hurts. But aspiration and (pre-)infection are never painless and breathing hurts.

Shocked I could write all this because moving my hands feels like work. I get really weak if I try to move around the house.

This isn’t as bad as it could be. But it’s not good. My breath smells weird despite phlegm normal color. And by now I know the feel of an infection trying to develop, a body trying to fight an infection and dropping other necessary priorities, and strong antibiotics, all mixed together. That’s never good no matter how good it is.

My biggest concern, my DPA’s too, is that my body hasn’t been good lately. I haven’t recovered from the hospital. That makes even a mild aspiration/trying-to-be-infection a really bad thing. And that’s why I feel so much worse than I should, not as much energy reserves. I’m not really freaking out on a personal level, but I’m kind of intellectually scared if that makes any sense. Because I know… it’s never good to aspirate reflux, and it’s never good to get the resultant chest congestion even when it’s not as bad as it could be, and it’s never good to get sick in any way when your body hasn’t recovered sufficiently from five weeks in the hospital to pull entirely out of delirium. (My DPA always reminds me –“Your brain isn’t working because your body isn’t working and your brain is part of your body and your body had a really horrible experience recently.”)

My DPA is super-concerned about the frequency of these aspirations and is determined to find a doctor willing to look further into my reflux than people have before. Because clearly while I sleep, in normal daily conditions, it’s doing something very different than it does when I’ve been fasting and go through the tests. And I’ve literally been told by four different doctors they haven’t involved the local GI doctors because all they do is run that test and base all conclusions on the test rather than on the real situation ordinary people live on.

So she’s trying to figure out whether it’s truly impossible to control my reflux or whether I simply don’t matter enough to most doctors to bother trying. She strongly suspects the latter. Suspects no nondisabled (white, etc., all the other things that make doctors see you as a person) person would normally be told to prepare to die young and do nothing to fight it.

And I’m feeling less and less passive towards my body and the medical profession the more often I aspirate and have to go on antibiotics or go to the hospital or the ER or whatever. I’m so fucking sick of lung infections and everything remotely associated with them. And it’s clear to me – it just is, it’s an instinct deeper than I can explain – that even the mildest of these could turn fatal under the wrong circumstances.

On a milder note I’m pissed off that I can barely read my Peanuts comics on the app I got, let alone the Madeleine L'Engle I was reading before I got sick.

Wow. I have been having trouble chatting on Skype and I wrote this?! Yay! Put here because easier than writing to separate people.