Tiny Violins

November 9, 2020 at 5:32 pm | Posted in Uncategorized | Leave a comment

This post was originally written in December of 2010, but I held off publishing it, even privately, for reasons that should be obvious.

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I’m about 6 weeks into this whole running experiment. Although officially I’m only done with week 3 of the couch to 5K program. I’m going super-slow because, in my estimation, my risk of injury is a lot higher than that of most people. I spent about 2 weeks on week 1 of the program, just because I was SO out of shape, and SO new to high-impact exercise. For those of you who don’t know, I’ve had rheumatoid arthritis since I was 17, and that’s approximately the last time both my feet ever left the ground at the same time during a workout. I’ve walked, and swam, used Stairmasters and elliptical machines, weight machines, balance balls, you name it. There’s not much in the low-impact category that I haven’t tried. But I’ve never been a runner.

Like 30 hour shifts in medicine, it was something I assumed was beyond my body’s capability to do, and so I didn’t try. I continued doing the kind of exercise I had done before developing RA. My doctor always said to rest instead of exercising, but my joints always felt dramatically better after exercising than they did after resting. I was a teenager at the time, so I did what made me feel better, instead of what the doctor said to do. There were days when my joints were so swollen and uncomfortable that they felt too unstable to use. But once the swelling went down enough to move the joint a reasonable amount, about half its normal range of motion, exercising at that point made the rest of the swelling go away faster, and kept it away longer. This was critical for me, because my RA was really bad.

Looking back, it was fortunate that I was in such excellent shape physically when I first got it. Joint inflammation produces a distinctly different kind of pain than that of muscle breakdown and repair. And I was familiar enough with the latter to know that the new pain was abnormal, and that something was really wrong with me. It usually takes anywhere from one to four years for a patient to get a diagnosis and start appropriate therapy for RA. For me, it took about six weeks from my initial development of symptoms until I was referred to a rheumatologist, and another two or three weeks till the actual appointment. That’s about two months from symptoms to diagnosis.

That’s also indicative of how rapidly progressive it was. I went from having one small inflamed joint to raging inflammation in nearly all of them in the space of 2-3 months. It was clearly either RA or lupus, and the early treatment was the same for both at the time.

Since then, it’s been a long battle between my immune system and the latest anti-inflammatory medications. Over the long haul, I’m winning, mainly because I have big guns in my corner, and an understanding of exactly how far it’s safe to push each of my joints over a whole range of levels of inflammation. I’d say the hardest part of college, for me, was simply learning how to function throughout the whole span of variation in limitation that I have, and simultaneously learning to manage the illness.  And what I’ve seen, over and over in my life, is that there are very few things I can’t do as well as someone without RA.  There are things people won’t let me do, because they don’t believe I can.  And there are things it took me a long time to try, because I didn’t believe I could.

It’s a developmental task most other people are exempt from.

But as I get older, more and more of my friends are having similar problems as I did 20 years ago. Meanwhile mine haven’t progressed too much. So, friends, welcome to my world!