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minnie

you rocked int eh wheel chair. dude i have some other hot picture of you some where. with shaved head and braids and 80 nose rings.

badgerbag

damn, scan it! I have almost no photos of myself from that time. I liked my two middle-of-the-nose rings...

Wired

A request, for those of us new to the party.... is there a post about why you were in a wheelchair?

badgerbag

What, you didn't know about my tragic terminal illness????

Just kidding.

I don't remember what I've written about it here in the past. I usually give people a short answer of "residual effects of car accident, back and knees messed up" but that is not really the whole answer, it's just easier than explaining for half an hour. (Or, if I don't feel like talking about it, I simply say "car accident"...)

Really nasty sciatica, so that my right leg would just collapse under me. I couldn't move my right leg forward very well. Actually, the sciatica pain is bothering me hugely right now, ever since the plane ride back from austin. I'm walking okay though. Amount of pain doesn't correlate with the leg-collapsing thing.

I didn't have good health care or a car. I had a lot of complicating health problems including asthma and chronic bronchitis (I never really got all the way better from bronchitis for more than 3 years.) My knees were both also having some kind of mystery trouble which still haunts them today, and I had shoulder surgery ... On top of this, chronic insomnia. This snowballed into really terrible fibromyalgia (not that I knew what that was for a long time....)

But, picture all those problems, and then the leg-collapsing and severe back pain. My doctor told me to lay flat on my back for 6 weeks to heal up any low back damage... this is the worst thing you can do if you have tendencies to fibromyalgia. I ended up in severe pain all over my body... read the descrips of FM if you are curious, but if you touched my skin, pretty much anywhere but especially back and legs, I felt levels of pain as if you'd hit me with a hammer.

Physical activity is the only fix for this -- and sleep. since I couldn't WALK... the phys. activity part was really hard.

It was horrible, very confusing, and hard to come out of. I'd get a little bit better and then blow it again. Gradually as my overall level of health and activity improved, I got better.

In the meantime I was getting a lot of noise from doctors about multiple sclerosis and other nasty problems - but could not get a diagnosis of any kind. Without a diagnosis, no disability benefits. My boyfriend Severin more or less supported me and took care of me, and Minnie did too, though I paid as much as I could for things out of my unemployment checks. My parents stepped in to rescue me eventually, we made up a lot of our differences, they really came through for me, and sent me to an excellent rheumatologist, Dr. Albert Fritzsche in SF, who diagnosed me, focused on managing insomnia and on educating me about FM. My parents bought me my truck, so that i could get around (I could sling the chair in and out of the back of the truck. Actually on bad days I would ask strangers in parking lots to get it out and put it in for me. ButI could drive, and could get myself into the chair.)

I spent many long days/weeks just enduring pain and barely able to roll over in bed or get myself to the bathroom. Let's just say I know how to roll painfully out of bed and pee into a jar, okay?

Lately I often think of how Minnie said to me once, "I just can't take it when you call me up and are all happy and say, "Hooray, I walked to the mailbox today! It's too fucking sad." It was... it was very hard to endure and no one wanted to be around me, and certainly no one wanted to be responsible for me.

Physical therapy, swimming, sleep drugs, gradual gentle activity, all helped. Swimming in cold water was bad (cold and wet is still very painful for me) but hydrotherapy, aka senior aquarobics, in a body-temperature pool was GREAT. I would cry with relief at the weight taken off me when I got in the water. Then ... well... cry again when i'd force myself to do all the exercises, I had to re-learn to walk with a normal gait (easier to do in the water, without so much weight) and would do stuff like write the alphabet in cursive 10 times with each foot, underwater.

For a while i had this slow life, where I could get up, organize myself, do some leg lifts or whatever, and go out and do basically one thing. I could do an errand, or I could sit in a cafe for a while, but then would be utterly exhausted, so that it was like trying to move through syrup... plus, the pain. I would drive down to the Los Gatitos downtown, and wheel to the post office and cafe. My zine and snailmail exchanges, and chatting with people at the cafe, was my life... Minnie totally saved me by moving to CA...

Once I got a bit better I got jobs tutoring and temping.

This is all why when I fuck up my knee (my left knee) or the sciatica acts up (like now) it scares the hell out of me and I get kind of freakish and moody.

The severe FM level of pain isn't there anymore and my health is great. But I still have this basic level of annoying pain.. it is why I fidget a lot. Moments when I'm not hurting anywhere are so rare, and when that happens I'm incredibly happy!!!

If it were not for my parents stepping in, and then for M. marrying me and supporting me while I got back on my feet, I probably would not have gotten better. So, think of that next time you feel pissed at a poor person who is not able to manage health problems... I did not get better because of my indomitable will... maybe a little bit... but mostly it was getting to call on privilege, and being rescued.

badgerbag

Even without the FM stuff which later complicated everything, it was so terrible to drag my leg behind me like a dead thing...
God!!!!!

I forgot to say that there *was* a car accident that doctors kept saying had caused the low back thing and the knee and shoulder thing, but that car accident was in 1989 so... whatever... it's really hard to say.

I got hit by a car while i was riding my bike, and landed on my right hip, shoulder, and head. (huge concussion, in bed for a week.) So they said that tore my shoulder ligaments and messed up my lumbar discs or nerves or something, and it gradually degenerated.

I still don't have any clear answers on the sciatica or knee problems. It doesn't really matter since the answer is just "stay as active as possible, keep weight off knee if it turns bad"


Wired

Thank you. I was hesitant to ask, because usually it's so annoying to describe over and over again why you're "broken". Whenever I've been on crutches, questions the first day will get a technical answer. The second day a technical summary. The third day, a terse answer. After about a week, I start making reasons up.

I often wonder how my dad dealt with it -- he was on crutches for years, and never supposed to walk again.

I do know what you mean about freaking out -- I am having a recurrence of the problem that put me on disability for three months when I was 22. I know how to fix it, but wrestling with finding a new doctor to help me find a new pain management doc, all in one day a week, ugh. So instead I'm gerbilling about being "broken forever".

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