Happy 58th birthday! Uh… hold on… better make that “85th”

There has got to be a maximum number of diseases and disasters, conditions and catastrophes that one human body can handle before it just gives up and dives for the worms.

Surely two life-killing viruses, cancer, a liver transplant and all their attending “issues” is enough for one existence. You think?

Guess not.

This past month I’ve entered the brave new world of autoimmune disease. A couple of choices present themselves: one is called dermatomyositis, which is tthe operative definition at the moment, and it is NOT your friend. If you must read up, here’s a link, but don’t go there if you’re the least bit susceptible to internet-based too-much-medical-info-itis. My other option is graft versus host disease – GVHD in the jargon. This happens when a bit of the donor’s immune system gets into the recipient’s during transplant, and apparently requires (in non-marrow transplants, anyway) the recipient to have a weak immune system. Congrats, me! I win again!

The next doc who says to me, “Oh, but the odds are so small that such a thing will happen!” gets taken down.

Which option, or if it’s some other exotic autoimmune condition, is mostly a debate for medical folks contemplating how many viruses fit on a head of a pin. From my point of view, it’s all the same: think full body onset of severe arthritis, coupled with rotting fingers, inflamed mouth, and really achy muscles. And that’s just looking on the outside; I won’t let them look at my innards. This is a full-body miserable.

To put a Stephen King spin on it, it’s like aging from mid-fifties to mid-eighties in three weeks. A real joy, that. And I was so vain about my much-younger flexibility. Ah, vanity: you are so one month ago.

So now I’m being treated with HIGH DOSE PREDNISONE.

What’s really freaky about all this – beyond the miseries and the HIGH DOSE PREDNISONE (those who’ve experienced high-dose pred know why I shout; the rest of you just think Roid Rage) – is that I am not supposed to have this problem. Not in a teleological “oh why me poor me?” sense, but in a medical one. You see, the treatment for conditions like dermato-whosis-whatsis is… immune suppressant drugs. Not just any immune suppressants, but the exact ones I’m taking to keep my almost-three-year old transplanted liver happy. My immune system is already suppressed (just ask any cold virus) so I shouldn’t get no autoimmune crap.

WTF???

Lots of medical heads are being scratched over this one.

One of the dilemmas encountered writing about navigating an eternity of medical adventures is, every time you have another one, it gets harder to document and easier to whine.

Truth is, it’s hard not to whine, at least a little. I’m not Mother Theresa (actually, Mother Theresa wasn’t Mother Theresa either if you believe the reports; she complained quite bitterly about most everything). Today’s whine is because this situation is damned uncomfortable. More uncomfortable even than surgery. Yes, I’d rather be cut open again than go through this.

And I said painful, right? I’m learning a lot about chronic pain: I am reduced and humbled by it. I beg the forgiveness of everyone I’ve ever known who has been caught in its velociraptor jaws for not giving them the respect and concern chronic pain deserves.

Regular pain is to chronic pain as a bad mood is to a severe and unending depression.

Don’t know what happens next. I see three kinds of docs next week and “answers” will be “presented”. What answers, and what kind of life they lead to… well… One thing the gloomy ‘net articles all seem to agree on is, there’s no “cure” here, only “remission”. And there’s what my body’s telling me, which is I’m not leaving this People’s Republic of Autoimmune anytime soon – if ever.

Maybe a better way to phrase the question in the first paragraph of this rant is, “There’s got to be a maximum number of diseases before your mind just goes POP! and refuses to play any more.”

I’m one of those people single-handedly running up the costs of American healthcare, using just one tall, skinny body.

Too Stupid To Die, indeed.

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No Responses to “Happy 58th birthday! Uh… hold on… better make that “85th””

  1. Larry Ackerman Says:

    Owww! And here I’ve been complaining about pain in my shoulder joints. My sympathy. I just wish my experiments with the pain research group would result in relief for you. They might but in years down the road. I’ll send you the name of a good doc in the Pain Clinic if you haven’t already been there. Sorry I don’t know any immunologists. It’s okay to whine. I’ll listen.

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