So sang Warren Zevon in "Life'll Kill Ya," the title track to his next-to-last album. And as we all know all too well, some do get those diseases. Turns out that Alice B. Fogel is one of those people.
RSD--Reflex Sympathetic Dystrophy--is its old name, Chronic Regional Pain Syndrome the new, updated, one. By any name, it's an autonomic nervous system disorder, related in some ways to both Multiple Sclerosis and Muscular Dystrophy: with CRPS, the central nervous system keeps reacting to a simple injury (sprain, fracture, stroke, even surgery) as if it were continually new. It sends these messages to the brain, which goes into action to heal this "new" injury, though it may be months old (Alice broke a bone in her foot in September; that's what led to this situation, and, while that bone is healed, the foot is not). The body's own defensive actions cause it to eat itself, in a manner of speaking: bones, muscles, joints, skin are all targets of the body's defensive reaction, which can lead to atrophy of all of those things. It can spread to other parts of the body, spontaneously or through other actions; Alice's fall also resulted in a tear of the meniscus in her right knee, but she may not be able to have surgery to repair that, since that could worsen her disease, or at least give it another point of attack. And the pain that comes with and from RSD can be excruciating.
Alice got her diagnosis about a month ago. At that time, I sort of glossed over it, thinking, "Okay, she has this thing, but it'll pass. It can't really be that serious." A week or so ago, she sat me down and explained thoroughly and in detail what it all meant. Turns out it is that serious.
At this stage, we know that this is going to be life-changing somehow (obviously it already is for Alice), but it could have larger ramifications as things progress and we see exactly where they're going. Will she still be able to hike or run, two of her favorite, necessary, restorative pastimes? She's hoping "yes," but the future, someone said, is hard to predict. While, as she was told by one Dr. "There's no such thing as a 'mild' case," thus far A's pain is not constant, and seems to be manageable. I know, I know: easy for me to say, but she's a very tough woman and has a high tolerance for pain. I like to think that almost 30 years with me has contributed to the building of that tolerance. We all do what we can....
Although it may seem somewhat weird for me to post this on a blog, Alice asked if I would be the one to spread the word, as she just wasn't up to the task, and this seems like an effective way to inform lots of our friends and family quickly. It also feels like an opportunity to alert folks to the existence of this disease, which I was pretty surprised not to have ever heard of in my 60 years here. If I had just heard of it in another person, I'd likely have both "poohed" and "poohed" it, but now that it's in my life, I can't avoid it, and it feels important to sound an alarm about it.
Because CRPS/RSD is fairly rare, medical people don't often even consider it as a possibility until it's too late, but if it's caught in the first 3 months, through treatment (primarily Physical Therapy) its effects can possibly be reversed and eliminated. Unfortunately, even though she had tell-tale symptoms all along, it was almost 5 months after Alice's injury that it began to dawn on people that this might be what was happening. Seems like good information to have, to at least raise the possibility early if you or someone you love is in a potentially similar situation.
After all, the verse that lends this piece its title ends "Some people get to die in their sleep/ At the age of a hundred and one."
No comments:
Post a Comment