I keep telling people it’s necrotizing faciitis…flesh eating bacteria. I think it’s funny because funny helps me cope, but they usually don’t get it. In reality, it’s a particularly stubborn chronic atopic allergic dermatitis. Something is irritating my skin causing an allergic reaction. Dermatitis, as I’ve learned in the last year, is an infuriatingly vague term for “we don’t know what’s causing your skin problems.”
It started last October as an innocent little patch of dry skin on my neck. Within months, it had spread, taking over from my nose to my collarbone. Then little itchy bits cropped up on my wrists. Since then, it’s all gone from my normal pale freckly skin to an inflamed, flaky, irritated mess.
My first dermatologist began treating it by lobbing various cream bombs at me. After two visits and more creams that didn’t do anything, he sent me to a specialist for an allergy patch test where myriad stickers infused with various allergens were firmly affixed to my back for three days.
Turns out I have become highly intolerant of four substances: nickel, fragrance, neomycin, and propolis. Sorry Bath & Body Works…we can’t be friends anymore. Bye-bye jewelry, Neosporin, and lavender dryer sheets. I am now living life unscented. Bye-bye candles, bath goop, perfume and 90% of my makeup. I am on a strict makeup diet. And I have a label: “Sensitive skin.”
First dermatologist, although adorable, wasn’t helping much and always seemed halfway out the door the entire appointment so I found another one who I feel is taking a holistic and somewhat more proactive approach. Unlike the first one, the second one listens to and answers my questions, explains how everything works and at least attempts to be simultaneously upfront and reassuring.
By the time I got to dermo 2, the itch had burrowed deeper so that no amount of scratching will suffice. My neck has turned pink. The spots on my wrists are huge and inflamed, and nearly perfectly round, like skin crop circles. Imagine you have the worst sunburn imaginable in your neck and wrist. Combine that pain with the itch of poison ivy. Then start stabbing the inflamed parts with a fork. Repeat until you can’t sleep. Don’t stop. Don’t try to resist the desperate urge to scratch. This is close to what I experience.
The good news? A biopsy confirmed I don’t have cutaneous t-cell lymphoma (that’s cancer). Today I was shot up with corticosteroids and advised to ingest Zyrtec (that’s “Zyrtec”) once a day for a month. Down the road? Might have to have another patch test. Might be my current dermatologist’s Show & Tell at dermo school. Might just have to learn to live with it.
My feelings include, but are not limited to: impatience (Can we just DO SOMETHING about this??) , frustration (Why won’t ANYTHING work??), embarrassment (This woman at work continually – loudly – points out when my “rash is back”), fear (Will I have to live like this forever, surreptitiously scratching my neck and wrists?), and a little shame (Some people have REAL problems. I have a skin rash. Can’t I just get over it? And please can we not cry every time we go to the dermatologist’s office?) Sometimes I can’t sleep because of the itch. Sometimes it’s all I can think about. Sometimes it makes me snappy. And it gets me VIP status at the Pity Party of One which in turn makes me feel even worse because, honestly, this cannot last forever and there are more important things to think about.
A few years ago, I worked with my friend K at a job neither of us loved that was a stepping stone to other things. She and I would IM often at work. One afternoon, someone started an IM thread about skin. Back and forth we went: My skin is so dry! Oh, I have terrible zits! My pores are huge! My forehead is oily! Finally, K, in complete earnestness, wrote, “At least I have skin.” I read it. I read it again. She wrote a follow up: “I can’t believe I just said that.” We both lost it. We excused ourselves to have a full fifteen minutes of belly laughing about her famous comic line, “At least I have skin.” It was macabre and weird, going through all the things you couldn’t do if you didn’t have skin but it was just what we needed at the moment. Since then, it’s become the refrain with us and a few close friends when things get tough. Burned your cookies? At least you have skin. Got a parking ticket? At least you have skin. Stub your toe? At least you have skin.
It’s a little messed up right now, but at least I have skin.