Prednisone in July, Clobetasol in November, Methotrexate in January.
So this is having insurance? The 15 years of having this disease, 2010 was the first time in my life I have ever been insured. The absolute rage I’ve felt leaving a doctor’s office in the past feels now more like a timid, ‘is this really happening?’ After I pickup meds at the pharmacy, I feel for certain that some monster bill will arrive in the mail, sent with already past due fees. There’s no way it can be this easy.
Meds are working so slowly, but I am going through somewhat fewer vacuum bags a month. Saying ‘meds’ makes me feel like a phony.
As I sit here, literally contemplating my navel, it occurs to me that whenever anyone finds out about my psoriasis, after asking if it hurts, they tell me that it is caused by stress and I should not stress. I’d like to start writing about those things that fill my mind when I hear that. I want to write about growing up in abject poverty in Appalachia. I want to write about turbulent childhoods with mentally ill parents. I want to write about being old before I was grown and homelessness, betrayal by friends, unemployment, and the failure of a ten year relationship.
BUT, I can also talk about a different kind of stress, which was sometimes good. Stress that comes from going from a 17 year old, homeless, high school dropout to having a bachelors in literature, a law degree (JD), and a law masters (LLM) in intellectual property. I can talk about learning to paint, play the guitar, and write screenplays.
Staring at this crusty sore navel, the center of my core, I try to reconcile the good, bad, and interesting things I’ve done. I hope this journal is big enough for me to get it all out.
Wanna hear the sad-country-song-story of my skin? Here’s my parade of horribles from the beginning ~1997: 16 going on 17 and my mom left for a homeless shelter, dad was gone since I was 2, I worked nights, and tried to go to high school when I could.
It started with a bit of rough skin on my finger where I wore a cheap metal ring shaped like a snake. The red rash was joined by spots of unbearable itching and burning on my arms. Soon after, I was covered: face, ears, limbs and trunk.
No insurance, nowhere to turn, I wore that infected skin to high school and no one would even look at me. They were happy when I didn’t come back. Lost my job in a restaurant and embarked on an untouchable stretch of sick loneliness, homelessness and determination.
That poor bastard teenage me had no idea what was in store for him.
What do you see first? Gross hair? Scary redness? This spot is the size of a quarter and lives on the back of my calf. This morning it had a thick silver scale on it, until I flexed my leg and it tore itself free. The scale can’t stretch like normal skin. Moving about, I shed skin like Pig-Pen’s perpetual cloud of dust.
I get scared when I see the wet, not quite bloody, tender layer of new skin. I want to sing a lullaby to the hyperactive cells, gently quieting them to lay down their over regenerative tasks.
It looks like a wound, but it is actually an over abundance of skin production. I looks like something you could catch, but it is genetic and not contagious. It looks painful and embarrassing, and it is.