And at least I'm finally online again. It may be stupid AOL that keeps kicking me off every 2 seconds, but it's better than the internet withdrawl I was having for the first half of my hospitalization. (Thanks again Observer for lending me your laptop while I'm stuck here. Oh, and we finally figured out Friday night that AOL has to be installed as a 16 bit program to work right with Windows 2000.)

*Edit* Forgot to mention that my illness has confined me to a wheelchair, so any suggestions of things to do have to be sendentary activities.

This message has been edited by nautilus on May 27, 2001 at 01:33 PM

On the morning of May 1, I came down with a rare disease called Transverse Myelitis. TM is a sudden onset inflammation of the spinal cord, causing (among other things) loss of muscle control and sensation at and below the point of inflammation. In my case, it took only 4 hours for me to go from being totally fine to losing muscle control from my armpits down, as well as control of my bowels, bladder, and my senses of appropriate sensation (i.e. I can tell if my legs are being touched, but have no sense of hot/cold, wet/dry, or sharp/dull). I spent 9 days in a medical hospital having 2 MRIs, 2 spinal taps, and tons of blood and urine specimens tested trying to figure out what was going on. Their big fear (based on an abnormality that they saw on my first MRI) was that my TM was caused by an initial attack of Multiple Sclerosis, but last Friday we finally got test results that probably rule that out. They also ruled out bacterial infection, so they don't really know what caused my case of TM. (Oh, and to make life even more great, the day after I was admitted was my 21st birthday. Instead of going to a dance club and having drinks for my birthday, I got my 2nd MRI and 1st spinal tap. Boy, don't I know how to have fun.)

Anyway, on May 9 they transferred me to a physical rehabilitation center. As I am regaining some movement (as the steroids I'm on reduce the spinal inflammation, some movement comes back), my purpose here is two-fold: 1)To relearn how to use my legs, and 2)To learn how to live life in a wheelchair so that I'll be able to function once I'm discharged and until I regain more use of my body. They also work on teaching us how to manage our bodily functions, since they aren't really managing themselves right now.

All of this just takes lots of time and patience (which my boredom is causing to run thin right now), and since everyone rehabs differently they have no way of knowing just how long my inpatient rehab will take. (I'll still have to have outpatient rehab once I'm discharged from this center.) Right now they're giving me an estimated discharge date of June 20, which would be 6 weeks from the date that I came to this facility. The last prediction I got from my Occupational Therapist was that they are predicting partial wheelchair/partial ambulation at discharge. In other words, I'll be able to walk some with assistive devices, but for purposes of stamina and endurance, I'll still need to be in a wheelchair for many daily tasks. The other big challenge ahead of me is that I live in a 2nd floor apartment in a building with no elevators, so until I can easily negotiate going up and down 25 steps several times a day, I can't go home. If this goal is not attainable by my discharge date, I'll either have to go live with my aunt (she's here in Pittsburgh, about 30 min drive from my apartment) or go home to my parent's house in Louisiana until such time when I can get back into my apartment. Assumimg I stay here in Pgh, I'll also have to figure out if I can do my job from a wheelchair. (I work at the front desk of a hotel, and spent my entire 8 hour shift on my feet before I got sick.)

So ok, I thought I was gonna give the short version, and I guess in some ways I did (I tried to at least spare y'all most of the nasty details), but I think I may have given more of the long version than I thought I would. Oh well. If you read all of that, thanks. My month of May has been total shit, and most of June looks to be the same, so I appreciate anyone willing to share a little bit of my pain. And like I said, any suggestions of what to do with myself (and no, don't tell me to masturbate, cuz I can't feel it) while I'm here would be greatly appreciated.

quote:

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Originally posted by nautilus:
(and no, don't tell me to masturbate, cuz I can't feel it)

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oh.. my.. GOD.

damn, that really does suck, i feel your pain. did you ever consider medicinal marijuana? that could keep you amused for a while. have you tried gameboy, n64, PS2, or anything like that? i really dont know, but i am sorry you have to go through so much.
it really makes me kinda count my lucky stars i guess.

Well, this is a really old-fashioned idea... but what about reading? Just any good book (check the numerous threads). It ain't great to read all day but it might give you other ideas and distract you a little.

How about playing chess? Against a real-life partner or a comp?

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Ah screw it.
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ICEGAMING.COM

And I have tried reading, and done a lot of it. I've also done other "old-fashioned" leisure activities like playing cards, putting jigsaw puzzles together, and doing cross-stitch. It's worked well so far, but after 4 weeks that kind of stuff is starting to get boring, and I have almost that much time still to go. The weekends are the worst, b/c we only have one session of therapy on Saturdays, Sundays off, and b/c of the holiday only a one therapy session again today. And since my only visitors this whole weekend were my roommate and a friend from 8-9 last night, that leaves LOTS of empty time to fill during the day.

At least it's back to a full day of therapy tomorrow. And with any luck I'll have more visitors during the week, and may even be able to get a day pass next Sunday, so that would at least give me 3 or 4 hours to get out of this place.

SNOOD!

Well- geez that sucks! Hope ya get better soon though.

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L'absence est à l'amour ce qu'est au feu le vent; Il éteint le petit, il allume le grand.
- Comte de Bussy- Rabutin

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L'absence est à l'amour ce qu'est au feu le vent; Il éteint le petit, il allume le grand.
- Comte de Bussy- Rabutin

This message has been edited by Chrissy on May 28, 2001 at 07:25 PM

If you're looking for something to consume a lot of time, I'd say get someone to pick up a few technical books on something you've been wanting to learn (programming language, OS, carpentry, whatever) and get something so you can use this new gained knowledge, and just fiddle around with it.

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Net Syndrome - http://www.netsyndrome.net/
Spydir Web - http://www.netsyndrome.net/spydirweb/