Apr 182014
"Up against the wall and don't move!"

“Up against the wall and don’t move!”

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.

This Peruvian skin ointment was the focus of a federal lawsuit.

This Peruvian skin ointment was the focus of a federal lawsuit.

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.

  5 Responses to “Excoriation or Imprisonment?”

  1. Glad to see you’re still coping. Never give up!

  2. Hang in there, Mike……

  3. Mike, sorry to hear of your latest challenges. I’m glad to hear that you are getting better.
    It would be great if you could find, invent, or improvise a seat that acts like the bed covers we used to use in the hospital to prevent or treat bedsores in people who were incapable of turning themselves in order to relieve the pressure on whatever side they were currently lying on.
    Pressure sores is another term for bedsores, as I’m sure you know.
    Anyway, these bedcovers were of an airtight material, plastic of some sort, that had small pockets sealed off -half of them- from the other half- or thirds, whatever- these pockets would fill with air while the other ones would deflate, then vice-versa. This process continued as long as the air pressure machine next to the bed was turned on.
    This caused a sort of massage of the patients body surface that was lying on them.
    The plastic cover was covered with a sheet, of course.
    This product was in use 40 years ago (!) so my momma tolt me ( :)) !!!
    just think how it must have improved by now!
    Can’t you find anything like that currently available?

    • Gwen, thanks for the suggestion. I have a low air loss alternating pressure mattress does what you are talking about and then some. Unfortunately, my current condition was caused by shearing of the skin rather than straight pressure. I believe that my wheelchair is primarily to blame and I am visiting a physical therapist on Tuesday who specializes in this kind of issue.

      • Good luck in having Medicare approving the appropriate cushion for you.
        When they finally aporoved my Permobil C300 they would not cover a cushion that would prevent pressure sores, since at this point this could not be documented. We paid out of pocket for the pride cushion you mentioned. I strongly believe our Medicare system is controlled by insurance compamies that are only interested in the bottom line and the bureaucrats running Medicare do have no clue about disabilities or rare diseases. , ,i just came home after a three week stint in a specialty/rehab hospital . IBM finally caught up with me and none of the compensating techniques did work any longer. I was refused a hospital bed although nowI do need help with everything . I wish you the best of luck with your care and please hang in there. I am rooting for you. Sending hugs.

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