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Briefing (August, '00)
Cyclosporine Diary: Food for Thought
In the middle of last month I posted my "Cyclosporine Diary," which I maintained for the first 89 days I was on the regimen. In addition to my experience, this month you can also read Ria’s account — Cyclosporine the Only Thing That’s Worked — and Stealth’s account — Retrospective on Long-term Methotrexate and Cyclosporine Therapies — in the Mail.
At the moment I sit here as clear of P lesions as I’ve been in the last ten years. I’m as clear as I was for several months this year and last while taking methotrexate. I haven’t applied a topical steroid in weeks. I’ve cut my hair short for the first time in a decade. I wouldn’t hesitate to present my fingernails to a manicurist. If I owned any, I would wear short-sleeve shirts and no one would know I’m a flaker. And shorts. And sandals over sockless feet.
But a part of me wants a lesion — just one — to linger.
All this normalcy crept up on me. As you’ll read in the "Diary," my start with cyclosporine three months ago was very rocky. My methotrexate regimen wasn’t maintaining my clearance and my derm stopped it abruptly and started me on cyclosporine. I was probably experiencing some rebound from the methotrexate while, at the same time, my cyclosporine was incorrectly dosed for lack of a weight scale at my derm’s office! (I’d gained more weight on methotrexate than I thought, and cyclosporine dosage depends on body weight.)
If I’m lucky, the cyclosporine will keep me clear for the rest of this year and well into next. If I’m lucky my renal functions won’t be measurably deteriorated in the process — thereby requiring an early end to the therapy. (Cyclosporine is poison to the kidneys.) But in the best case this can only last until early next summer. Though some people — like Stealth, as confessed in his email — manage to stay on cyclosporine for longer than the recommended 12-month limit, I won’t stretch my luck. That means I have another rebound to worry about. Already my derm and I are laying plans. Rather than repeat the sudden adjustment I made three months ago, a little less than a year from now we’ll start to reduce my cyclosporine dosage and start again on a weak dose of methotrexate. I’ll be weaned off the one while breaking in the other. Hopefully this will be sufficient to deter rebound.
I am having a wonderful time appearing normal. My enjoyment, however, is mostly private. I’ve elected not to change my wardrobe — so my closet remains bare of short-sleeve shirts. I’m not throwing away my partially-used tubes of topical steroids. I haven’t stopped using my coal tar shampoo. I think any of these behavior changes would be complacent. The anguish of a severe rebound — or even a gentler return of the lesions — is too severe, in itself so stressful I believe it must feed its own cause. I experienced this for the first time in April and May.
I’m still trying to wrap my mind around the psychology of clearance and rebound. I’d read about it in so many emails from FlakeHQ correspondents I thought I understood it. I did not understand it, at least not on the psychological level. There is a part of my consciousness that shouts, Don’t ever let it all go away because you will be at risk of forgetting who you are.
I once knew a man, a well-respected and influential man at the peak of his career, who had a rude tattoo on his left forearm. It was about a four-inch long Vargas-style woman posing nude, cheesecake fashion. This tattoo was like his very own, indelible pin-up girl. During a normal business day no one saw this tattoo because his dress shirts and suit jacket hid it. But when the occasion was casual he wore short-sleeve shirts and his tattoo was quite conspicuous. I asked him on one of these occasions about his tattoo. As I had presumed, he acquired it overseas when he was a soldier during the Viet Nam war. I asked him why he didn’t have it removed and he said, "I used to think I kept it because it reminded me of who I was. But as I’ve grown older I’ve realized it reminds me of who I am." I pursued it no further.
His explanation is one of those rare utterances that has become a fixture in my mind. I never tire of thinking about it. I always come up with fresh meanings and implications. When I became psoriatic I thought about it even more. And, when my lesions cleared on the methotrexate regimen, his utterance stayed in my mind like a warning buzzer. Yet again, as I sit here typing this, I hear him utter it ... I’ve realized it reminds me of who I am.
I keep telling people, "Don’t let your psoriasis define who you are." Am I encouraging an unhealthy denial? I hope not. Our flaking is, at least, a part of who we are. I lived for 39 years without psoriasis and during that time I formulated my own strong opinion about who I was. When the P came, it came as an invader, a conqueror, and my sense of self took on the characteristics of a repressed and beaten people barely existing under the regime of some foreign dictator. But over a decade the unrelenting P was assimilated — at least to a degree — into my sense of self. (Being the host here, at FlakeHQ, for the past five years has had a lot to do with that.) Then, when the miraculous remission on methotrexate came last year it was like being liberated. But of course I knew I wasn’t really being liberated, simply being granted furlough for awhile. But I didn’t want to think about the end of my furlough! To save myself from anguish at the inevitable rebound, I needed for one lesion not to go away. A lesion that would remain so that I would look at it and be reminded of who I am. I think that would have buttressed me, psychologically, from the depression of rebound.
I suspect it will be many more years, and many more hundreds of emails, before I’m certain of the degree to which P has defined who I am. Lots of very balanced flakers have letters archived here that say outright, or imply, they don’t let flaking define them. They did not need me to say, "Don’t let your psoriasis define who you are." Somehow they have assimilated their condition so well it does not distinguish itself as a defining feature. Perhaps that is a goal worth setting. Perhaps.... -Ed