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 ŕ 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 ŕ 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/ >

quote:

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Originally posted by Chrissy:
One word

SNOOD!

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LOL, my roommate last summer had that game on her computer...it is soo addictive, I'd be worried I'd miss therapy! Definitely wouldn't have to worry about passing the time though.

Found out today that my recreational therapist is taking me out w/ a couple of other ladies for my first "outing" tomorrow. We're going to a nearby mall. It'll be nice to get out, but I'm feeling a little nervous about it. For one thing, here in rehab everyone is in a wheelchair, so it's a very comfortable atmosphere. So part of me is nervous about the social aspects of being in a wheelchair (i.e. being stared at, treated differently). Hopefully though being with two other people in wheelchairs will help. The other thing is that since this is my first time out in the chair, it will be my first real test to see how well I can function while confined. (I just keep thinking back to when I worked at Hallmark and all the glass fixtures we had, and out ungraceful I am in my chair.) I guess I have to learn sometime, though, and now's as good a time as any.

Thanks so much to all of you for your well wishes. I'll be sure to write again tomorrow night and let you know how my outing went.

Well at least it's good news that they don't think it's multiple sclerosis. but that sounds like about the only sliver of luck you've had.

Err. Learn something new would be my advice, like a new programming language, or explore a branch of science that you've not looked at before. It can really be quite absorbing teaching yourself a new topic..

Edit: PS: WTF is a spinal tap?

This message has been edited by DuSTman on May 29, 2001 at 05:44 AM

a fake rock group that was made up for a funny movie.

where they take a needle and stick it into your back till it almost hits your spinal cord and draw out fluid for testing.

the second one realy sucks and if done wrong could do more damage.

Ill take the first one any day of the week.

wouldnt it make ur back spasm or something?

quote:

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Originally posted by Chrissy:
One word

SNOOD!

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Bah!

One word.

Diablo...uh 2

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Radio Dj: so now that your not on saturday night live what are you gonna do?

Jim Bruer: I dont know.. fight mexicans or something.

FUHAOHB2IPDEFCIPUDQNFQFYLOEGOGB

Well, the one good think about my spinal tap is that since most of my body is numb i couldn't feel them inserting the needle. The bad part about it is that the whole reason I had to have the second one done was that a portion of the first sample GOT LOST! Apparently there are only a few labs in the country that run the full battery of tests for MS (they are long, involved tests, and I'm sure the equipment is quite expensive) so they had to send my CSF (cerebrospinal fluid, what they collect when they perform the lumbar puncture) all the way out to California for testing. I don't even know if it got there the first time.

In other news, my outing to the mall this week was quite, um, interesting. A few highlights:
-Not all wheelchair ramps are created equal. I did okay on most of them, but there was one along a curved portion of a curb where, b/c it had been raining and both the ramp and my wheels were wet, I started to spin out and almost fell backwards. Very scary.
-Restaurants and clothing departments are not wheelchair friendly. Tables/racks are placed too close together, no room to maneuver a chair.
-Actually having to use a handicap bathroom stall is quite an experience. Fortunately the one I used (at Ames in Waterworks Mall, if anyone in Pgh ever needs to know) had an extra-spacious stall, and room to pull the wheelchair alongside the toilet. Most bathrooms aren't as generous.
-Most of the people we dealt with were pretty helpful though. Got a few looks, and a few people who acted put out when asked for help, but by and large I was quite relieved.

We can start with... syf0n, becuase he'd probably make fun of you... that asshole...

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

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