Sore Spots

Unflinching Photos of My Psoriasis This is not a gross out blog, or a place for posting home or medical remedies. Psoriasis sucks. The sight of open wounds on a person triggers ancient evolutionary imperatives to avoid that person. I would like to use this journal to write about my experience with that horrific gaze and possibly exorcise my own self loathing and antagonism towards my difficult skin.
I have no reason supporting my nascent optimism, but the voice of despair, the one that says things will never change, may be giving way to a new season. 

I have no reason supporting my nascent optimism, but the voice of despair, the one that says things will never change, may be giving way to a new season. 


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. 

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. 

I look at my family, my grandparents and great grandparents. This disease is genetic, they say. I think about all the wonderful things I was given by these people. I see their faces in the mirror and in everything I do. I can’t curse them for giving me their strange skin, but I do wonder which of them was it that dealt with this. There’s no story handed down about it. I’m left to wonder if they simply concealed it, or if it was such an inconsequential part of their lives it was beneath mention. 

Even when the skin clears and no one knows, I know. The disease has entered my head and no pills, shots, or ultraviolet light can burn it out. When you look at me on the street, at the office, or in a restaurant, I will never think you are checking me out. I will know, with an ever more anxious sense of dark dread, that you have seen something that creeps you out, that identifies me as disease. 

My confident persona, my invincible pride, do very little to stifle the cold distance of being shunned. Once that distance has been felt, and felt for a very very long time, I don’t know if I can make myself forget it. 

I was a happy kid… I think. My mom tells me her dominant memory of me as a little guy was the persistent sound of laughter coming from my room. More than once, my room was little more than a closet, and once, an actual closet. 

My parents divorced when I was ~2-3 years old. After that, my dad would be gone from my life until I was 18. I remember the sense of loss, the fear of the yelling voices, and the loss of security. 

Luckily, I was raised with my uncles and had no lack of powerful men to show me how to be a man. However, my rebellious phase was still extreme. 

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. 

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. 

I used to feel human.

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.

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.

My skin falls off all day, everyday. This is one morning’s accumulation from just my legs. I don’t know if I can ever have a normal job, when I can’t go 5 minutes without debris falling out of my sleeves or down my pants leg. At home, its a perpetual vacuuming nuisance, on the bus its merely a shameful disaster, but at work…  once it gets noticed all over the floor of my workspace, I’ll have to face it that my long sleeve shirts can’t hide this completely. I snuck a small brush and dustpan into my bag so that I can sweep when everyone goes to lunch.

Some days, I lose all sense of perspective on this disease. At those moments, my self pity expands like a pond taking in flood waters. My self pity is as loathsome as my skin sometimes. Complaining about a nonfatal, not really crippling, illness? I am trying to lighten up, but looking at endless flakes really ruins my mornings. 

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.

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.