as small as a world and as large as alone

10:10pm August 7, 2014

I hope I don’t look as messed up as my last photo.  I don’t feel as messed up.  I hope I never, ever get meningitis again.  I never really knew I had meninges, I learned about them in neurobiology but never paid much attention, but let me tell you they hurt worse than the worst migraine ever and then you get a migraine on top of that if they decide to go and get fucking inflamed.  Everyone was shocked I was calling it an eight instead of a ten (in fact I had a nurse arguing with me that it was a ten at one point), but it wasn’t making me pass out and it wasn’t making me delirious so I was calling it an eight.  Maybe I wasn’t being fair.  I don’t know.

I don’t know how I’ve gotten through the last few days.  It’s one of those things where you just live through it because you literally have no other choice.  It sucks.  A lot.  I slept.  A lot.  Whenever I could.  I couldn’t get on the computer much (I think there was a day when I tried to do tumblr, I don’t remember much of it though) because of the eyestrain of the light.  Today has been my first really good day.  I should be going home in the morning.  They were going to let me go today, but I told them I’d rather be sure that I’m stable.  Nothing sucks more than having to come back to the hospital, through a brightly lit ER, when you have a problem that involves headaches at any level.  And in general nothing sucks more than having to be readmitted after you were already admitted once.  And have to face a different ward, a different bunch of doctors, a different bunch of nurses.

I’ve been on the neuro ward and it’s been wonderful.  Everyone has been wonderful.  I haven’t had a single negative interaction with anyone at all.  Nurses, doctors, med students, all perfectly respectful.  I think you get more respect when you have something really definite like a positive spinal tap for meningitis.  (And you know you have meningitis when the spinal tap sucks much less than the meningitis does.  I barely remember the pain from that.  Whereas my first spinal tap, with suspected meningitis but no actual meningitis, was horrible.)

They’ve also been really really cautious.  Like, they know I don’t have bacterial meningitis, but I’ve been on all kinds of IV antibiotics, and they’ve had me in isolation (which is actually nice because the last thing I could have stood during the worst of this was to have a roommate), everyone wearing yellow masks and gowns and the whole deal.  It’s like just the fact that it’s meningitis means they’re being careful.  Which is probably good, given that if it was the contagious kind that would really suck.  But given that it happened right after an IVIG infusion, and given my test results, it’s really plain that it’s aseptic meningitis.

I’m really happy to be going home tomorrow.  I hope nothing gets worse and jinxes that.  As much as this has been a good hospital stay, it’s still a hospital stay, and hospital stays suck by definition.  They totally scramble your med schedule, they ratchet up my anxiety levels beyond any reasonable expectation, there’s always the possibility of getting assholes working for you, and in general they’re not like being at home.  

Skip this paragraph if you don’t want butt/feces talk.  I can’t even wipe my own butt here.  At home I have a bidet.  I hate having to ask people to wipe my ass.  It’s not that it’s intrinsically humiliating, but it’s that I’ve had people deliberately humiliate me for it before and it’s a risk every time I ask.  It’s at the point where I’ve asked occupational therapy to help me figure out what’s going wrong between my hand and my ass, because I can clean other people’s asses perfectly well.  So I assume it’s something about motor skills combined with not having the visual ability to tell what’s happening back there or the physical ability to feel whatever most people feel on their butts.  So maybe if I had a system of mirrors in place, I could wipe my ass in situations like this.  A bidet is still more efficient, but for hospital situations and travel, it would be nice to have another solution.  If I try to do it myself, right now, what happens is it gets all over my hand, and somehow doesn’t get off my ass, at the same time, which is just doubly pointless and disgusting.

Ass talk ends here.

Anyway, I’m not feeling good.  But I’m feeling immeasurably better than a few days ago.  I feel washed out, I feel constantly on the edge of a migraine, I feel terrible, really.  But it’s better than full-fledged meningitis.  I think meningitis may be my new measure of how bad a headache can possibly get.  It really sucks donkey balls.

Meanwhile Laura may be hospitalized here for all I know, she has a knee infection and I haven’t been in contact with her because that would involve using the computer.  So I have no idea how she’s doing.  And I’m worried about her.

(I’ve just realized I can call her and Skype her so I’ve just done that, I should be finding out more in a second.)

Anyway I’ll send this.  And I really hope to be on tumblr more soon.  And at home soon.  And back to normal soon.  Because even the best hospital stays are hell.  Especially when they’re only the best because people are respectful, and they’re actually pretty sucky because you have some awful disease.

tl;dr: For anyone who doesn’t know, I was hospitalized for aseptic meningitis due to IVIG infusions due to presumed myasthenia gravis.  I’m doing better and about to go home.

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