Diagnosis, sort of

I’d like to just give the short version for now and more diagnosing process will happen later.

I went to a neurologist. Dr. Capybara said I am obvious mid to high spinal cord injury, incomplete and high functioning. Whether it is the old car accident that did some bruising or compression, and it has been periodically aggravated, or whether it is some weird syndrome or degenerative thing, they will tell later, and also more precision about the level, but maybe c6 or upper thoracic, and it is also not necessarily pinpointable like that but is more complicated. So other doctors and ortho people were looking at my lumbar spine and sciatic nerve root and discs and not seeing anything and also noticing that my right leg has amazing muscle tone, and them figuring if i have a disc thing or muscle/ligament injury like a back sprain, I am not getting better fast enough which is somehow my fault. (And they’d do things like reflexes and poking me, and act like I was overreacting and faking pain.) But my leg has (legs have) amazing muscle tone and often so much pain, because they are spastic. As in spasticity. Like, not under my voluntary control. Also, the stuff with my arms that only acts up now and then, is not like RSI or some sort of separate neck thing that flares up, it is the same spinal cord injury. Or lesion. Or whatever it is. Maybe it is MS but maybe not. Whatever.

My assignment is to take these seizure meds at a low dose at night and then increase them slightly every week, and see if that helps the pain. Also I can have baclofen which (unlike regular muscle relaxants) might actually work.

How kind of the neurologist to gently take off my socks for me, completely understanding, and to then put them back on. And to believe in how bad my pain is.

Cold is so bad, mostly because of spasticity. But for years people kept just running blood tests on me and saying I don’t have arthritis so, the pain was… I dunno, just in my head? Or that I should exercise more.

This diagnosis, imprecise as it is, puts a different spin or frame on everything for me. Instead of being sort of a malingerer who doesn’t get better fast enough, I am something like a C6 incomplete para with very high functioning, who got better amazingly and slowly over time.

There is some backstory here:

2007: Day of things breaking This year’s flareup begins, stutteringly
2007: Sciatica pwned! more beginnings of this year, my hopeful feelings
2006: a little babbling while the drugs last In pain, I write a letter to my body, and photograph my uncooperative legs
2006: a little whining about my legs A bit of a flareup in 2006, pain and spasticity
2006: in which I pass the evils of capitalism across generations I describe a flareup in Feb. 2006 and remember the bad times
2006: Now with flames I muse upon my secret past as disabled person (expanded upon in comments)
2005: walkies One of those moments when I was feeling the pain and weakness and getting scared
2005: dyke march report – In which I march on legs, and reminisce about times past, and run into Joi who is also intermittently disabled
2004: giant pathetic rant from 1994 I transcribed a journal entry from a 1994 notebook, interesting
2004: Not at all meaning to be mysterious the story again including the car accident, concussion, original neck/shoulder/arm immobility (worst pain of my life, threw up and passed out), asthma, and degeneration sequence in 1989-1990.

(from 1989) I keep getting worse and worse shoulder and low back problems: same thing, I sneeze, or bend over to tie my shoe, and suddenly I’m sort of frozen in one position and can’t move and am gray and sweating with pain. The doctor gets more and more frowny. X-rays never say anything significant.

I remember these times, which haunt me,

I could no longer raise my arm above my head. Who knows… All sorts of badness then happened… My shoulder got better but my back and leg got worse and then the other leg started just collapsing under me. I would take a step and the leg would just buckle. No idea there. I lost my job.

After collapsing on the campus of DeAnza I ended up in Valley M3dical Center being kicked around from department to department having conversations like this: “I can’t walk, what am I supposed to do? My legs don’t work.” “They look normal on the MRI and the xray. Without a diagnosis, we can’t give you a wheelchair. You can’t get a diagnosis until you see neurology and they don’t have appointments and won’t talk with you until 9 months from now.” “But I CAN’T WALK.”

More detailed backstory, in a coherent narrative, with photos:

*Moody retrospective In which I start to tell the story of wheelchair, crutches, cane, walking and all those fluctuations. With photo of me rollerskating naked down Market Street in 92. I forget, often, that in 90-91 I often couldn’t walk, and doctors were telling me it was because of “referred pain” from pelvic inflammatory disease that mysteriously they could never find any evidence of, or because of internal adhesions and scarring. 1991 was the days of peeing in a bucket because I couldn’t get to the bathroom, and not knowing why, and welfare hospitals who treated me like I was a junkie seeking pain meds. 1990 was when I couldn’t ride my bike anymore, and couldn’t get to work, and many other disastrous things happened.
* Scrabble in the park How I saw mountains for the first time, and hobbled to Vernal Falls. Some horror stories of bad diagnosing from welfare hospital doctors. How bad the pain can get, trying to hold myself up with arms off the seat in the car, because of the vibrations. The feeling I have had for the years of non-disabilty, of effort and bravery and fear.
* Ms. Muscle How I stole a wheelchair.
* Between the post office and cafe Depths of the hard times, 1992 or 93, pain and disability level much worse than I am now. In which going to the cafe, or walking to the mailbox, was the highlight of my day. A lot of days on the porch wrapped in blankets, eating pot pies. I encounter people’s strange, rude, reactions to visible disability.
* All dressed up with someplace to go – babydyke badger with wheelchair, 93-94ish, going to parties and being a wild child no matter what
* Santa Cruz Mountains – 1994-ish. In which I treat my cane as a punk rock fashion accessory
* Growing out my hair – In which I could mostly walk, but sometimes wheelchair. Handrails and bathrooms explained.
* Cactus Club In which I get better slowly in 1996, onward, give away my wheelchair in 97, and limp for years. And then got pregnant 3 times and had Moomin. 2001 onwards, occasional winters on and off crutches.

I think of all the years that I had to explain things at work like why I needed to lie down under my desk, and just get horizontal; or why it was sometimes hard for me to walk across campus and sometimes not. I think of all the countless hours Rook massaged my legs, or that I had to lie down during our role playing games. All that time Rook always accepted me and without question helped me manage pain, ran me hot baths, sometimes would rub my feet for *hours* while gaming or while he watched TV. I worked hard on my own, but he got me through so much of it. All the times when for months I would manage a day, barely, but would come home from work and go to bed at 6pm, and he would deal with all the rest of our life and practical things. (Even when I was “not disabled” these last 7 or 8 years, this would happen.) All the times I was in university classes and would lie down on the floor to take notes and people acted like I was a freak. And I would just have to say, “Well, I have to.”

All the years when I couldn’t explain very well.

It is killing me a bit to think all that time, I was fighting a spinal cord injury, which if it were diagnosed, I would have had a lot of help, and real rehab.

As anyone knows who has not had a diagnosis and then gets one, it is a relief to have an explanation to give. No matter how scary the diagnosis.

I do (as always) feel proud of my years of struggle to get better, and I always respect the hard work that took. In job interviews where they ask what, outside of work, are you most proud of as an achievement, I always say “I was in a wheelchair and used a cane for most of the 90s, and got out of it.”

That sounds wrong in some ways because there is nothing wrong with using the wheelchair. But I am proud that I basically managed my own rehab, consistently, for years.

This post is longer than I meant it to be. I am having trouble processing all of this.

I trust that I will get back to where I was at the beginning of last week, and will be walking with almost normal gait for a block or two, and not constant pain. That is my goal. If I can get from Zond-7′s house to the cafe, and from my house to Hole Foods, then I will be very happy with that level of ability. And then from there I will set my goals further to walk more and more.

For now I would be happy to be able to *wheel* to the Hole Foods, but I can’t yet. I’m going to drive to work today, and ask for help, and lie down on the couch while working, to save my sitting-up time for the evening thing.

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16 Responses to “Diagnosis, sort of”

  1. Jo

    Wow, a diagnosis! I’m glad even though it is not a nice thing to hear, I’m sure, that you have a spinal cord injury.

  2. Yatima

    Fuck. Now I have to hit 18 years’ worth of doctors. *Heads off to charge taser*

  3. badgerbag

    Hahaha yatima! I’d like to see that! And I’ll be there by your side with my neuro-whip and a hot p*ker.

  4. Madeline F

    I’m really glad that you have a diagnosis, and a doctor who is good about the talking to you and the helping with socks! And seriously, walking off a spinal injury? Fucking metal.

  5. Rose

    OMFG. You are a rock star.
    I want to come when you and Yatima hit all the doctors. We may have to make a posse and hit six years worth of mine, too.

  6. Pretty Lady

    I’m really glad you finally have a diagnosis. Puts an awful lot in perspective. Now I’m compelled to go do research.

  7. Pretty Lady

    Good God. I’m reading stuff like this and my brain is going ‘chink chink chink chink chink.’ All those problems with insomnia you’ve had off and on over the years. The fact that you can’t lie still for long without fidgeting. The extreme sensitivity in places, coupled with capacity to tolerate intense stimulation in others. Possibly even the digestive problems are related, and the reproductive issues.
    Good God. It all seems so obvious, in hindsight, except it wasn’t.

  8. elswhere

    You know, I might even be able to hit some doctors on your behalf, after all that.
    So, so glad you have a diagnosis.

  9. freakgirl

    I just found your blog through BlogHer and it’s just remarkable. I’ll be going through the archives for the rest of the week, I imagine.
    Keep on fighting! You’re a rock star.

  10. Revena

    It sounds like Dr. Capybara is pretty awesome. I’m so glad you’ve got a new angle on this, and that you’re so confident and ready to deal with it.

  11. cynthia

    My goddess, it took them *eighteen* years to figure this out? The next time some wingnut blathers on to me about how we have the best health care system in the world, you’ve just handed me more ammunition to blow the s.o.b. away. It’s great that you finally have a clueful neurologist.

  12. Lisa Hirsch

    OMG, OMG. What an intense posting. I join everyone else in wanting to hunt down the doctors who missed what Doctor Capybara terms an “obvious” diagnosis. I understand your relief at KNOWING and hope that this leads to rehab and more effective treatment of the pain.
    As you say, there is nothing wrong with using a wheelchair. I think there is also nothing wrong with wanting to have more mobility on foot. Hugs from here.

  13. LIsa Williams

    You know, I think you’re getting at something fundamental here, too, about medicine and health. As time goes on, we’ve gotten a lot better at treating acute illnesses — trauma, heart attack, stroke, and many infectious diseases.
    What’s left are chronic diseases and/or illnesses and injuries we don’t know how to pinpoint.
    This kind of thing has affected me and my family, and it’s scary — you spend forever in diagnosis, often getting no real answers, and it’s not clear when, or if, things are going to get better, or which treatments will work, and there seem to be so many more people involved, most of whom don’t talk to each other. It’s exhausting and frightening and infuriating.
    I don’t think we do a good job, as a culture, of preparing people for what we actually face when something’s wrong these days. I feel like it’s hard to figure out how to think about the situation, to have the mindset that will keep me doing the right things, keep me on the path.

  14. Thida

    I’m so glad you finally got some kind of diagnosis. OMG. I’m so proud of you for persisting in the face of no medical answers and pushing past that internalized ableism of “I’m fine.” Something I still struggle with sometimes. And I mean pride as in disability pride, sister.
    When *competent* doctors do things over and over, it’s because they don’t understand your body. Your body is not doing what the medical literature tells them to expect. If I had a nickel for every repeated test or every time a doctor said words to the effect of “I don’t understand why you have this symptom” I’d be rich. That’s different from the doctor saying “You’re faking.” I used to hear that from shame and speak up less. Now thanks to the hard knocks school of dealing with my son’s bizarre and horrifying issues, I speak up every time. Sometimes nothing more happens, because they honestly don’t know what to do, but once in a while I get some treatment that actually does something, or something that actually helps.

  15. Pretty Lady

    What’s left are chronic diseases and/or illnesses and injuries we don’t know how to pinpoint.
    That’s precisely why I started studying ‘alternative’ methods of healing, over a decade ago. I used to work the information line of a major public library, and I heard stories over and over and over–chronic illnesses, autoimmune disorders, nervous system disorders, cancer, no diagnosis, misdiagnosis–and when I started researching their questions, it became clear that Western medicine is terrible at dealing with these things. If there’s no ‘silver bullet’ to ‘fix’ you, Western doctors not only don’t want to deal with you, they don’t want to admit they can’t ‘fix’ you. So they torture you in the name of ‘science.’
    Alternative therapies don’t ‘fix’ you either, but they do a lot less aggressive harm. As Thida says, once in awhile something actually helps.

  16. laura queue

    unfucking believable that it took them 20 years of fucking around to figure this out. so bizarre, all these things that women have that are never adequately diagnosed. some day it will be so apparent that our culture is fucking medieval with women and people will be aghast at the abuse and medical neglect.

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