Alone

I cannot explain the pain I am in. This time, I am not battling fissures, but raw, red, burning, itching, split, ugly skin. It is terrible. It stings when I pee, it burns and tears when I wipe and it itches non-stop. I wake up itching in the middle of the night and during the day it is hard to concentrate on anything. I can't remember when I was in this much pain. I am grumpy and it is affecting my life. I am so desperate, I am actually considering refilling my prescription for steroid creme when I know it will do nothing but thin my skin further and cause side effects. Maybe this time it will be different?!

When it gets this bad, I get a mirror and try to figure out what is going on. When I looked, I was devastated. I have never seen my skin this thick and white from scar tissue, peeling, small tears in multiple places, red and raw. There are parts that are disappearing and melting into other parts (which is part of the disease) and all I could do was cry.

I hate my body.
I hate that there is not a day that goes by that I am not aware of my disease.
I hate that I have to wear tampons during those times of the month when I have moisture (usually when I am ovulating) and can't stand wetness on my skin.
I hate that the thought of sex for weeks now sends me into panic attacks.
I hate that I can't sleep.
I hate that when I wake up, if I don't shower or rinse off immediately, I come out of my skin due to pain and itching.
I hate that I am back to showering multiple times a day despite having a bidet.
I hate that I cannot find a doctor to help me.
I hate that when I looked in the mirror tonight, I was disgusted and ashamed of myself.
I hate my disease.
I hate that I know no one that has it.
I hate that this is my life.
I hate that there is no cure.
I hate that I will once again pretend that everything is okay and go to bed without telling a soul.
I hate that most people don't know.
I hate that I cannot call in sick tomorrow (what would I say?).
I hate that no one asks me how I am.
I hate that I am going to cry myself to sleep.
I hate that I.am.alone.

~S