We Are Librarians
Data Wranglers in the Edge of Chaos

The spinal cord in springtime

Email alert Wednesday morning that there was a message waiting for me in the patient portal.  Nervous as I logged in, anticipating the results of the previous afternoon's scan.

"Your cervical spine MRI looks good. There is some signal change consistent with old scar tissue. The lesion is slightly smaller in size and does not show any enhancement (active inflammation)."

Flooded with relief.  It's not a surprise.  It's what we expected.  I'd done a good job of not dwelling on the slender possibility that the inflammation would return, but there's no denying the fear.  Generally, transverse myelitis doesn't recur, but there's been nothing typical about my case, so that factoid hasn't given me a lot of comfort.  But now that I'm seven months from the last cyclophosphamide treatment with no recurrence of inflammation I can feel a little more secure.

Improvements continue, although they're slight and not very apparent to the observer.  For short distances (getting around the house, navigating a restaurant, making my way around a classroom building on campus) I can make do leaning heavily on a cane (I alternate between Mr. Whiskers and Roadrunner).  If I've got to do a bit more than that (for example, making my way around a conference) I use a walker, and if there are longer distances to negotiate, Lynn can push me in the wheelchair (Lightnin' McQueen).  It's not great, and I long for the days when I could stroll around interesting cities by myself for hours.  But I can still drive and throughout all of this I've kept up my normal work and travel schedule and gotten to much of what I would have done previously.  I'm grateful for that.

My hands remain too stiff to play guitar, but I still write in my journal with a fountain pen for an hour nearly every morning, and I can type.  I can cook, although I don't do it as much as Lynn or I would like. My overall stamina is the limiting factor there (but when I made the bolognese a couple of weeks ago I was on my feet in the kitchen for two hours straight).

I take baclofen daily, which minimizes the tremors & twitches & spasms that were so prevalent 20 months ago.  The arm, leg and back muscles are all in a constant state of tension, as if I'm flexing them all at once. They never quite relax. (As Hooks put it, I'm perpetually in neutral, never settling into park).  Instead of working smoothly in pairs, the muscles fight each other.  So all motion is difficult and tiring.  I started with a new muscle relaxant yesterday.  As always, we're in uncharted waters.

Strange to think that this has been going on for years.  Looking back, I now realize I was having symptoms three years ago, although it took another six months to get to the paralytic attack that sent me to the hospital the first time.  I don't expect ever to be "fully recovered" although it is still not unreasonable to think that I'll play guitar again and be able to walk more easily.  Exercise and neuroplasticity can achieve amazing things.

Here in the deep south we are fully into early summer.  When I drive home from work the trees on either side of the freeway are thickly lush in a calico of a dozen shades of green.  The good news from the scan of my poor chewed up spinal cord reminds me to pay attention and enjoy the gorgeousness of the sun splattered leaves even while I'm maneuvering through rush hour traffic.  I could be annoyed at the lousy drivers ahead of and next to me or I could grin with pleasure at the personalities of the trees.

Easy choice.

 

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