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Tiny Improvements Are Good

K., my neurologist, scolded me. Gently. He never stops smiling, the chiding is in his eyes.

"Once a month isn't enough."

"I know. My goal has been once a week, but I haven't been able to manage it."

"Busy at work?" One eyebrow up slightly.

"That, and the holidays. And all of the usual excuses that one comes up with." He grins. Point made. I will redouble my efforts to get to the pool once a week.

This was my six month assessment and it confirmed my subjective impressions. Improvements in strength and sensation. Slight reduction in spasticity. I'm bending at the knee more when I walk. Tiny, tiny improvements. This is good.  He thinks the lower back and hip pain that bedevils me periodically is sacroiliitis, brought on by the awkward way I've been putting weight on the right side these three years. An injection of corticosteroids should help.

That it's not a direct effect of the transverse myelitis is a great relief.  One of the constant dangers of a chronic condition is that you start to see it as the cause of every difficulty you're having.  Lynn cautions me about not identifying myself with my condition.  It affects every moment, but I can't let it be the substance of every moment.  The pain in the hip is suddenly easier to bear when I no longer worry that it's a manifestation of the damage in the spinal cord.

Since the spasticity and the spasms are improving, I'm going to start to cut back on the baclofen a bit. I'm hoping that will reduce the slight fogginess, the mental heaviness I often feel. It's a sensation of my head being encased in some kind of translucent capsule. I can think my way through it, but it can require considerable effort. Less baclofen might help. But it might also increase the spasticity, so I'll need to monitor that. Adjust as necessary.

K. continues to present cautious optimism. "Given the likely extent of the damage to the spinal cord, you're not going to regain full function, but improvements should continue."  As long as we're trending in the right direction, I'm happy with the tiny steps.  "Take your time," people tell me as they hold a door open for me.  I always do.  I have plenty of time.

Daily exercises.  More physical therapy.  The pool.  The things I do, not the things I am.


Eleanor Cook

T.Scott, you are going to think this is totally crazy, but if you are having a pain in one hip for no reason you should assess your mattress. Is the pain worse while in bed and in the morning shortly after rising? It could indeed have nothing to do with your chronic other health issues. If your mattress is over 10 years old, consider a new one. God knows there are enough mattress stores around these days!

A friend of mine with multiple health issues was having this problem and upgraded her mattress and the problem simply disappeared! I am having it now and am seriously considering this since our mattress is old although I thought it was fine -- maybe not though!

T Scott

Eleanor -- thanks for the thought, but I'm not having pain for no reason. Sensible diagnosis, good treatment plan. Mattress problems are not my issue.

Melissa Narans

I love that Lynn reminds you that everything isn't about the chronic illness. I do this as well. When I get a little winey Ed uses black humor and reminds me their are many people who would love to have the excellent healthcare I receive and great medication. Brain fog and fatigue are the symptoms I find most frustrating. Not being able to express myself the way I would like. Think of you often and send my love.

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