Hi, my name is Emily. I am not a vampire. However, at the direction of my dermatologist, I am living a “full vampiric life.” I swear, I’m not going to suck your blood. I don’t have sharp pointy teeth. However, I am, naturally, a night owl. I have horrible insomnia and I’ve spent most of my life sleeping during the day and staying up reading books all night. I do love reading vampire sagas. Hmmm…“Twilight,” I think at last count I had read the full series five times (mostly in the middle of the night when I can’t sleep), and have watched the movies 3-4 times. When the movies originally came out I actually went to the midnight showings with friends, however we were middle-aged moms, among a sea of teens and we were not dressed up. I’m still “team Edward” all these years later if you care to know…but I digress!
I’ve had dermatomyositis for close to 24 years now. My skin has never really responded well to treatment. I have all the classic skin symptoms: facial heliotrope rash, v-sign, shawl rash, Gottron’s papules on my hands, Gottron’s sign on my elbows and knees, ragged cuticles and capillary changes, periungual erythema, holster rash, and scalp changes with hair loss that I call “my disintegrating scalp.” I can’t go out in the sun. It makes me feel like a thousand little knives are stabbing me all over my body!
With the addition of Raynaud’s Syndrome in the past couple of years, the skin manifestations become more of a concern because I am not healing as easily. Last month I had a small sore on my hand that quickly turned into cellulitis.
Get yourself a brimless hat, put it on immediately when you wake, and take it off to go to bed. Wear your sun protective gloves indoors. Replace the overhead lights with Edison bulbs. Turn off the lights when you can. Wear sunscreen – even indoors.
I’ve tried nearly all of the available medications, topical and systemic, for both my skin and muscles. I react badly to half of them and the other half don’t work.
Recently, in a frantic call, about the cellulitis to my dermatologist, he told me to embrace the “full vampiric life.” I chuckled, but he was serious. I am already very careful about the sun, I wear long sleeves and long pants year-round. I’ve been wearing sun protective swim suits, really full body suits, for about 10 years. I am a reformed sun worshipper turned pale face. Unlike the myths I don’t turn to smoke in the sun, but I do melt. Unfortunately, he wasn’t joking, and he wasn’t talking about the lights you typically hear about. He meant all light is hurting me. Interestingly I already knew that bright indoor light felt hot on my face, but I didn’t connect that to doing damage. Interior light bulbs included. I told him I avoid those weird spiral bulbs, and only leave the house for my daughter’s skate practice, he countered that even incandescent bulbs are likely harming me at this point, and the rink probably has fluorescent. Uhhhhhh. Yeah. That made sense.
I can’t go out in the sun. It makes me feel like a thousand little knives are stabbing me all over my body!
“Get yourself a brimless hat, put it on immediately when you wake, and take it off to go to bed. Wear your sun protective gloves indoors. Replace the overhead lights with Edison bulbs. Turn off the lights when you can. Wear sunscreen even indoors.”
I’ve been doing this for about a month. The skin on my forehead, which looked and felt like an alligator leather purse, now has flattened out and is less flaky.
The hair I had lost is coming back in. The sores and crumbling parts of my scalp (well, really all of my scalp) are healing and regrowing! If I forget to wear my gloves, I can tell the difference. Who knew that indoor light could be so damning?
At first I was worried about another outward sign (wearing a hat that is obviously for medical reasons going into the hot midwestern summer) of my being sick. I already have the rash, I walk with a cane at times, etc. but I have to stop worrying about that and do what’s best to protect my body. The pain of the skin rashes gets worse every day. A little fashion accessorizing, even if not by choice, is worth it if it helps ease the pain.
Now, I sit in my coffin, I mean on my couch, in a room with lowered lights, and watch vampire shows like Buffy the Vampire Slayer, just waiting for the chance to tell another dermatomyositis patient about how the vampiric life changed mine! The only blood sucking going on around here is when I get blood drawn for tests!