OR, Some True Things, Some Gross Things, and the Heartbreak of Psoriasis.
This post isn’t about diet. It’s only tangentially about exercise, but it IS about health! And a terrible secret.
Five years ago, spots, each the size of a pea, appeared at the center of the palms of my hands. The skin there was raised and red and crackly. It split open at any movement and I bled frequently (gruesome, ain’t it?) They hurt like a thousand cuts. It was the Lenten season, so, since despite my earnest piety I’m a smartass at heart, I held my hands before my husband and said, “LOOK! STIGMATA! LOL.” As months passed the spots got bigger and more painful, the stigmata spread across my palms and appeared on my fingers. I was always Band-Aided half to death, and learned a peculiar way of using my hands so that no one saw the palms, useful when serving communion.
There came the tipping point when I realized I wasn’t even WRITING because my hands hurt, much less taking care of the mundane chores of life like laundry and cooking and dishes and stuff. I went to my doctor who sent me to a dermatologist who diagnosed me with psoriasis.
He gave me a prescription for a cream and said “see me in three months.” We did that exact pas de deux for more than a year. I’d come back after three months, show him my hands, and he’d prescribe something else, and off I’d go.
Then it began on my feet, exactly as it had on my hands. The difference? I was a runner, and over the course of a year, I wasn’t able to take a step without misery. “OMG I’M THE LITTLE MERMAID, LOL!” But the funny was wearing thin.
The dermatologist sent me to a psoriasis specialist who started me on light treatments (you put your offending parts into a special light box for feet and wear special glasses and then your feet get an exposure of UVA light which helps psoriasis.) It helped marginally for a few months, then I inexplicably began to burn, even when they dialed the machine way back down to my original dose. This, I was told, can happen to some patients. BOO.
Then came months and months of the same treatment dance with the psoriasis dermatologist. I put the worst crap in my body, you have no idea. Methotrexate, which made me too sick to get out of bed for four days each week, Cyclosporine which did something bad I can’t recall, I think something found in my bi-monthly bloodwork. Some other pills. Weird, stinky creams, steroid ointments with vitamin D, etc. I faithfully used them all, I was the most compliant patient EVER. Meanwhile, I gained 60 lbs. over those three years of messing around with my palmar-plantar psoriasis.
And then came Raptiva. Sure, it was expensive and the insurance gods looked down and said, “LO, THIS COSTS TOO MUCH, NO WAI LOL.” And my doctor was all, “DUDES SHE RILLY NEEDS IT, SRSLY.” And they said, “WE SAY UNTO THEE, well, ok.”
I shot that stuff up for, I dunno, over a year and it was awesome. The first couple of shots were not so great, because they made me sick. I had a fever and the chills and a terrible headache and all. I was diagnosed with diabetes soon after the Raptiva shots started (not related, I was told,) but I got the blood sugar under control and by then I could WALK, and OMG I was healed!
I started working out and then runnning and in exactly one year after starting Raptiva I’d lost 50 lbs.
Soon however, there came disturbing reports of Raptiva patients contracting deadly brain infections. I hate it when that happens. My beloved Raptiva, my savior and my bane, was removed from the market last summer and I was orphaned. And the stigmata returned. In the months since I’ve slowly lost hand and foot function. And gained weight.
Humira, my last hope, doesn’t work.
BUT WAIT! A new drug! Stelara! She rides to my rescue! OH NOES, the insurance demons are laying traps in her path. HOW WILL IT END???
Some Psoriasis Facts:
1. Psoriasis is thought to be an autoimmune disease of the skin. It isn’t contagious. It’s like, say, lupus.
2. Caring for psoriasis is a part-time job filled with hours of boring routine and sticky messes.
3. About 2.2 percent of Americans have psoriasis. Which means that even if you cant see it hiding under their clothes, you know people with it.
4. My type of psoriasis is very rare because I like to be special.
5. My life with psoriasis gets very small when I can’t walk or do things. I worry that people who see my hands will judge me, think I have leprosy, and feel justified in their belief that God likes them more.
6. Diabetics don’t like leaving bloody footprints on the bathroom floor. In addition to the pain, it makes them entertain thoughts of infections and amputation.
7. Psoriasis is statistically linked to heart disease, diabetes (!) and other really crappy health problems.
So now you know what I didn’t tell you before about the stigmata and why it might make it more of a challenge to lose weight and work out and get fit and all that. I really believed in my heart that Humira would would be like Raptiva and I’d be pounding out my road work every day well before January first. I was sure that I’d TOTALLY drop 20 lbs in ten weeks and I’d just flip my hair and casually tell you how easy it was. Joke is on me, heh.