Things could be worse—I could be in the end stage of this disease.

I study the causes of pain because after two shoulder surgeries in one year, my pain is far worse than it was—and spreading—and my surgeon doesn’t know why. During my studies, I have occasionally come across RSD/CRPS (Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome). I’ve found strange comfort in its nightmarish nature because when my own hurting was at its worst, I could always tell myself, “I might be bad-off, but at least I don’t have that.”

Well, it looks like I do. At least, my internist thinks so. Usually talkative, he articulated the dreaded acronym and walked out without another word. I have no idea what he was thinking. I'm now awaiting a bone scan.

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”
Deborah M. Shanley
Executive Director
International Research Foundation for RSD/CRPS

I don’t see suicide in my future, although I think about it all the time—you might even say I’m obsessed with it. I don’t even see narcotics in my future unless my doctors can give me something that works a whole lot better than Demerol, Dilaudid, Percocet, Vicodin, and Norco, none of which helps enough to justify the side-effects.

But what DO I see in my future? Sometimes, the most cheering thought that I can come up with is that I’ll probably be dead in another couple of decades if I can but hang in there. It’s not a sunshine and lollipops sort of thought certainly, except in a “jump off a skyscraper to avoid being burned to death” kind of way.

So far at least, the pain is not so overwhelming, but what I can often enjoy my time with Peggy, and nothing means more than that. I get support from two places—her and my fellow bloggers. A few local friends try to be helpful, but they truly don’t have a clue, and when we’re together, it’s ever in my mind that I still look healthy. If I were they, I might very well be saying to myself that, surely, the problem just can’t be THAT bad.