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WARNING: Don't try this at home! What you are about to read involves decisions I believe were right for me, but that in no way means they are necessarily right for you.
It all started in 1977 when I was on prednisone. To be fair, the drug did keep me alive, but all the while my body was telling me bad things were happening, I just didn't know what until a couple of years ago when I stumbled chest-deep into some quicksand (part of life in the wild Northwest.)
A chiropractor reset both shoulders and, using hatha yoga, I eventually reset the rest of the dislocations. Subsequent x-rays, however, revealed dead bone tissue at the tops of both thighs - really raggedy stuff that had been grinding away at my hip sockets, lo, these many years. The surgeon said the damage had all the earmarks of a drug side effect and, suddenly, I was up for a hip replacement.
Then everything changed. The night before surgery, I was bitten by a very stressed little cat. My finger turned purple, the operation was postponed, and I came home to eat some antibiotics and rethink the whole thing because on the same day as the cat bite I'd learned something new.
When a normal person dislocates a joint, he goes to a chiropractor and the chiropractor resets it. But if someone with an artificial joint suffers a dislocation, he goes to the hospital and the surgeon resets it.
If that person has had good solid muscles around the joint, the odds of a dislocation would have been less, but what myasthenic can guarantee muscles around anything?
Big Turmoil
Big Turmoil! Should I skip the hip replacement? Give it a pass? That could preclude repeated surgeries over the rest of my life - but at what price? I'd already had two years of chronic pain and concluded I was against it. Maybe I should just go ahead and hope for the best.
This hand-wringing went on for weeks until I realized I was looking at things all wrong. My personal goal wasn't the substitution of body parts. It was a return to whatever physical freedom I had before the quicksand caper. Besides, who knows when some nice person might invent an artificial hip that can be reset from the outside?
After my discussing it with the surgeon, the operation was called off and I took charge of my own rehabilitation.
First priority was to realign my skeleton so as to properly support the pelvis. Some muscles had to be lengthened, some shortened, and all of them strengthened. Talk about a myasthenic challenge! Plus, I had no idea how much all this body-building stuff would hurt.
For pain, I turned to ibuprofen, acupuncture, and deep tissue massage. To rebuild atrophied muscles, I use an exercise bike, some super-easy hatha yoga, high quality protein, and I dance. We're not talking break dancing or Martha Graham here; just lots of rhythmic wiggling around. Surprisingly, dance has turned out to be the key to everything. Somewhere in that quicksand escapade I lost my coordination but dancing has brought it back.
I also learned something wondrous: The instant you take responsibility for your pain, it doesn't hurt nearly so much.
OK, so why am I telling you all this? Because heavy duty drugs are an inescapable part of life for many of us, and while we must be grateful for all they can do, we still need to keep our antenna up. Life happens. Sometimes that means we need to get a little creative. In this case, not only did having MG indirectly cause unexpected new limitations, but honoring the realities of that disease has led to a whole new path. It isn't an easy path, mind you. Progress has been achingly slow.
But there has been progress.