Life with inclusion body myositis presents some difficult choices. My latest circumstances found me spending lots of time at the local hospital wound care center, buying illegal drugs, and facing long periods of solitary confinement in a 3 foot by 7 foot space. Okay, so I’m exaggerating a little, but we have to make this interesting don’t we?
I’ve been in a wheelchair since 1999 and for the past several years I have not been able to get out of it other than to go to bed or visit the toilet. This means that I am sitting in one position for about 15 hours a day. That is never a good idea even for healthy skin, and my skin is far from healthy. Recently a large area of the region where I sit has lost several layers of skin. The wound care doctor said it was excoriated. This is a fancy word for saying that the skin has been scraped off. It doesn’t feel good, and in fact was at one time a favored form of punishment. The doctor also said the only way to prevent my wound from getting much worse, which could result in surgery and a lengthy hospitalization, was to go straight to bed and stay there. Two hours on one side and then two hours on the other.
The doctor also recommended I use a prescription ointment called Xenaderm. It works very well, much better than any of the other ointments or creams I had tried. But when I got the bill from my pharmacy I discovered it is not covered by insurance and costs $31 per tube. A little investigation revealed that the ointment is a Peruvian concoction not approved by the FDA and in fact was the subject of a major lawsuit in Florida. On the other hand, all three wound care physicians recommended it, it works, so I’m using it.
I have been following the bed rest instructions, up to a point, and I’m happy to report my skin is doing much better. However those who know me will guess that I’m not taking this lying down (sorry, couldn’t resist). I am working with my wheelchair provider, MDA doctor and a physical therapist to try to improve my wheelchair seating so I can resume a reasonably normal lifestyle. Right now I am sitting on a custom Ride cushion that cost several thousand dollars and is no longer comfortable. I think that as I have grown weaker my body shape has changed. My weight is still the same, but more of it seems concentrated in the worst possible place. I will record my progress with a new cushion on this blog in the weeks ahead.