Mail (August, 1998)

Dovonex Worked—While I Was Insured
from Faust

Hey Ed: Among other things, this (rather long) note is to thank you for providing a forum for us Flakers, a species of people who by and large are tough, smart, and funny as anybody I've ever encountered. John Updike once wrote an essay about his psoriasis, and I recall his mentioning that the Italian name for it is "morbus fortiorum", or "the disease of the strong." Not only are our immune systems generally, er, active, but we tend to have a grasp on the power of our own attitudes. This makes us tough. Nobility from adversity, and all that rot. Of course, if I were on the sunny Mediterranean coast myself, my attitude would be even better.

Flakers' notes are constant reminders that 'this damn [disease / condition / curse]' (pick a term and spit out the words while shaking a fist) is a bitch, and yet not quite enough to crush the indomitable spirit of people who are self-possessed and have a sense of humor. Or maybe we're just all tremendous pains in the ass, and refuse to give up. I was taken by the woman from Australia who delighted in torturing gawkers and clumsy questioners by explaining that her spots came from a large octopus attack.*

I've enjoyed your site for a long time, but I'm writing now because my own psoriasis is flaring to beat the band, and I feel the need to check in with "my people." I lost my health insurance, and therefore, no more Dovonex for me. Reading your report, Ed, I'm conflicted. I agree with everything you said, yet Dovo is the ONLY treatment that has done anything for me, and I've been through as much as you.

Dovo is tricky. I was on the bloody stuff for months without significant effect; I thought it was $100.00 a tube Vaseline; it cut down on cracking and sealed off the spots, but that was it. Slowly, very slowly, at a glacial pace, the spots started to thin, and then retreat from the middles outward, and then pale to a lovely dusty rose, and then a couple months ago they blended in with the surrounding skin at certain times of the day, or on good days. This process took like 2 years, I'd bet. Meanwhile, the petroleum-beeswax-lanolin base of the stuff became something I really liked for its emollient effects. And now, within 2 weeks, zap. I'm vacuuming my BED, fer cryin' out loud. This sucks.

The "invisible flakes" phenomenon you describe is pretty much right; I find that elasticity in the skin is everything, though. I'm coating myself with petroleum jelly now, to try to replicate that effect. I have big spots basically everywhere, for a total of... I dunno... maybe 40 to 50% of me. The chest, back, trunk and thighs are nasty when they're thick and full of fissures, since I need to, ya know, walk around and live my life. That skin has to stretch, so if oily goop makes it redder, or makes the scale clear and thin, I say okay. I don't run into too much trouble with bleeding, but then it's been a while since a flare like this. Apparently that 0.005% of Calcipotriene was important. I'm trying to stay in the sun as much as I can this summer, and hope I can hook up with health insurance soon.

One last thing. I'm a writer, among other things, and I like to find little romanticized ways to look at psoriasis, since it's settled in for the duration. I've got a slew of war analogies, of course. Stuff about it being me and yet not me; Zen-like dualities and the like. And the idea that we're all part dragon, like the kid in the Narnia books.

I've been kicking around this memory I have of being in 3rd grade, Mrs. Masbruch reading to us little Minnesotans about Norse mythology. I seem to recall there was a story where the hero—some clever little dwarf, or possibly the god of fire and mischief, Loki—made a deal with the bad guys, who were probably fire giants. This is all very patched together with my subsequent interest in mythology, so who knows how much I'm remembering and how much fabricating. Anyway, the deal was for something amazing in exchange for a pound of flesh. (No, this was not Shakespeare, but good point.)

The part that stuck was, it came time for the smart-ass hero (and this is why I favor Loki) to pay up, and he said, "You can have a pound of my flesh—but not one drop of my blood." The giants (or whomever) were befuddled, and had to let him go untouched. At the time I thought it was cool, and then went back to baseball cards. Now, I wish I'd payed closer attention. Anybody out there ever heard this story?

Thanks for the place to drone on. Remember, all my flaky brothers and sisters; there's gotta be something we know that the rest of humanity don't. I myself fervently hope it's something about happiness, self-esteem, or serenity, and not about moisturizer. Later! -Faust
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* This is a woman I could get to know, provided she has a sexy accent and the body of a (spotty) volleyball player. See what you can do, eh, Ed? [Readers, see link at end.]

*****

Ed's Response: How interesting, for a fellow whose handle is "Faust," to like a story where the small guy outwits the big bad guys with brains instead of brawn. I think I would have remembered that story about "take my pound of flesh—but not one drop of my blood" if I had heard it in third grade, but perhaps not. Of my third grade year, I remember only my classmate Melissa Anderson's wonderful back tickles.

Regarding your Dovonex experience, yours is the really sad case. Finally find something that works and its high cost makes you insurance-dependent to get it. When the insurance goes, so does the remedy.... But you don't want to get me going about health care and the capitalist ethic, or how P fits into the whole lousy scheme. (We Ps are about one power of ten short of representing a market of significant influence.)

I don't have the patience you demonstrated waiting so long for Dovonex to work, but the difference is, I know other less expensive topicals can keep my psoriasis endurable. Were Dovonex the only palliative that worked for me (as it appears to be for you), surely I would grow more patience, too.

You wrote, "I like to find little romanticized ways to look at psoriasis." I guess I do that, too. Perhaps we all do.

Sometimes it helps to ask yourself, "What has happened in my life that I'm glad about, that I can directly associate with my psoriasis? In other words, what good things have happened that probably would NOT have happened if I were not psoriatic?" I have lots of answers to those questions, but the most obvious one is this place—FLAKE HQ.

Stay in touch, Faust. We could definitely use more derivative Norse mythology here! -Ed

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