miss_swamp: (Default)
miss_swamp ([personal profile] miss_swamp) wrote2012-04-29 10:32 pm

the websites say to get a wig

Do you know why I'm a teacher? Is it because I love kids, or because I'm so good at it? If I'm being honest, those aren't the first reasons. I went into my teaching program at the end of college because I knew it would give me decent health insurance no matter where I lived. I turned out to be pretty good at it, but the reason I'm a teacher today is because I have lupus.

I was probably going to get lupus eventually anyway, but my trigger was a bad sunburn I got while sea kayaking with my brother Maine. I'm still suspicious of kayaks and I haven't been back to New England. I was 20, about to start my 3rd year of college.

As I started school again, the burn healed slowly, seemed to spread rather than retract. My face got rashes, my lips got sores. The dermatologist told me I probably had herpes, which horrified me as a careful young lesbian and which scared my friends off sharing our usual late night pints of Ben & Jerry's. Anti-virals didn't help much but the sores eventually went away--only to be replaced, on Thanksgiving morning, by painful, stiff joints. I hobbled around and had trouble using a pen to write class notes. My hair thinned. I borrowed a cane. Sometimes I needed help getting out of bed. By Christmas I had dropped one class (Greek--I was already realizing that seminary might be off the table) and was miserable enough to let my mom accompany me to the doctor. My girlfriend did research on this amazing new thing called the World Wide Web (whoa). "You have lupus," she said. It sounded right.

They took what seemed like a gallon of blood, ran dozens of tests. Gave me steroids which started my feeling human again. Diagnosis: systemic lupus erythematosus", no kidney involvement. I went to physical therapy, bought some nice thick juicy pens, learned to use my joints more gently. And by the time classes started up again at the end of January, I was determined to go.

And since then I've mostly been fine. I weaned myself first off the prednisone, then years later off the hydroxychloroquine (it can give you glaucoma, see). For several years, I'd get stiff joints around finals time, later report card time. I checked in with my rheumatologist at least every 6 months. "You're fine," they'd say. "You're lucky." And: "Your blood work shows you still have lupus. Be careful in the sun and listen to your joints."

The thing is, it helps to be happy. It helps to limit stress. I hadn't had more than a creaky moment around James (yeah, I'm allergic to cats, too, but have never had trouble with his--viva adrenaline ;) ). Then a week before the boys turned 1, I got pregnant with Ellen. Yes, on purpose, but the stress of parenthood combined with the body changes to knock me down a bit. I hobbled for a couple of weeks, called in extra help with the twins, took a few more pills, felt better pretty fast. I quit the lupus drugs entirely in the 3rd trimester because that's the recommended procedure.

Two years later, sometime in March, work got even more ridiculously stressy and the rash and sores came back for the first time in 16 years. My joints don't hurt, thank goodness, but my skin does. I've been wary of kissing even though I know it's not really cold sores. When I went to the doctor, she noticed a pretty significant bald spot behind my right ear. Alopecia. I had a student several years ago who had it. Maybe I can track her down, get advice on where to get cute hats or how to style my hair so I don't make the bald spot worse. It's pretty large, though fortunately in a decent location to be hidden. The drugs have me feeling a lot better (if hungry!), and the sores are diminishing. But it'll take a long, long time for my hair to grow back.

Still, I'll take baldness over kidney failure any day of the year.

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