Monday, September 25, 2006

The Heartbreak

"My disease." I hate that phrase. Stupid, imprecise, makes all kinds of assumptions. Just the opposite of what medical language is supposed to be. But I'm talking about my disease today, something I rarely do.

Eight years ago, at the end of undergrad, I discovered that my health coverage had a charming clause that capped not only my out-of-pocket pharmacy expenses, but the amount the plan would pay. I had used it up, because the topical gunk that dealt with my psoriatic lesions (we call 'em "spots" in the trade) happened to be this awesome synthetic vitamin D-3 analogue. Sunshine plus beeswax. Not available in generic, then or now. Sorry, kid, I was told, you're too sick to be covered anymore. So I did my best; I got by with OTC products for a few months, until I had a bad flare-up. Big lesions. Spots on my face, and up to then I almost never had spots on my face for more than a few days in winter. Cracks and fissures. Scales, peeling, crumbs in the bed that were totally unrelated to food. Dragonfly wings all over the house. All very Singing Detective. Desperate, maddening, and absurd.

And I called up my derm at the time, the man who would eventually semi-quasi-not-really retire to Mayo Scottsdale, the elder statesman who would later encourage me to go into medicine myself. This is a man who has a talent for saying simple things at just the moment I have become ready to hear them. He got me hooked up, I don't even remember with what, or how. Maybe it was after I started working at the dot-com, and the founder/CEO (another of my statesmen) started my benefits a month early. The derm-doc affirmed what I had been doing, and got me in for an office visit. Overbooked me, I think, if I remember right. When I said something dim about not wanting to inconvenience him, he said "yes... but you're suffering."

Hm. Hadn't thought of it like that.

Chronic illness is part war, part marriage. You want to fight, but if that's going to be worth anything, the fight can't be everything. You want to live with the situation, but without simply surrendering a whole corner of your life to it. You need to decide for yourself (and you can renegotiate anytime) whether the goal is to eradicate the offending nastiness from your life, or just get through to next month with a decent quality of life and not too much stress. Even the most battle-hardened, treatment-aggressive patient will, if he is paying attention, discover that being "sick" has something to teach. Even the most yielding, Buddha-like survivor knows that living with something is different from curling up in a ball and giving up (particularly if that sort of "living with it" means hitching your star to a poorly-defined symptom complex and a stack of presriptions). But yeah, this definitely sucked. I guess I was in fact suffering from psoriasis, at least at that point.

That was eight years ago. Since then, a rotating combination of cool pharmaceuticals kept me out of that kind of trouble. Since 2004, I've been on Enbrel, which rocks so hard I'll write a post about it alone. I love this recombinant human protein molecule so much, I would totally marry it.

I ran out in July. I have more coming, very soon. I've been off for about 6 or 8 weeks. Today I went to the Urgent Care, and they punted me to the ED. To my workplace. It's bad again. It will be okay, more okay than last time, and sooner. But yeah, it's bad today.

I'll talk more soon, because right now, more than 4 of 10 pain or unending static in my nervous system from itching, I am just too annoyed to blog. I don't like suffering. Particularly my own.

1 comment:

jenblossom said...

Chronic illness is part war, part marriage. You want to fight, but if that's going to be worth anything, the fight can't be everything.

This is one of the single most awesome things I have ever read.