A time I'm unable to find the positive

Rewind back 17 years I had a horrible skin rash on my neck and legs it was Christmas time and I was in Utah visiting my family.

My mom took me to a dermatologist who said he thought I had a rarely diagnosed skin disease. He asked permission to do a biopsy I said if it helps figure out treatment go ahead.

Two weeks later I was told I had dariers disease and there wasn't any given treatment for it. It's something I was born with that went misdiagnosed for a number of years because I didn't exhibit its typical symptoms. It's an autoimmune disorder and genetically passed from mother to child. My mother does not have it nor its symptoms, but the active gene was passed on to me.

Here's where tests began. Steroid creams, cortisone shots, accutane which places it in longer term remission, but the side effects are horrible, required two negative pregnancy tests and birth control. The side effects of birth control lead to an ER visit with all the symptoms of a mini stroke. That lead to a choice to have an endometrial ablation which is a sterilizing procedure and the doctor asks if I'm certain I'm okay with not having children and he's shocked with my calm demeanor and my fear of the 50% chance of passing the skin disease onto a child. The ablation wasn't completely successful, but I learned a lot from the surgery. As if that wasn't challenging enough I also had to make a choice to have bilateral breast augmentation because of the lesions not healing.

I've learned to live with it and be tolerant of people who ask about it out of curiosity. Some times I'm more sensitive about it than others. The last time I went to donate blood I had a small flare and the rn commented on it. I was so incredibly uncomfortable after that and I've had a spot on my left arm that has been flaring and healing for over two months now. It's an incredible source of frustration and even more so because I want to donate blood but won't because I need it to heal. I've left two messages for a dermatologist here that a dear friend speaks very highly of, but it's upsetting to me that they want me to schedule a visit before I even have a chance to ask thow much they know about the disease itself or its treatment. The last dermatologist I asked about his knowledge of it went straight to offering the next worse alternative to accutane.

The hardest part for me is when my activity level increases or I get hot it often triggers a flare and it gets hot and itchy. The trigger points are usually the neck, upper back, ears, torso.

Tonight I got to play ultimate frisbee glow in the dark style which was great, but my skin decided to have an attitude problem.

I'm laying in bed typing this hoping the Benadryl decreasing the swelling and the zinc cream soothes the pain.

I think the largest lesson I've learned from this is that it isn't who I am, but it's what I have and it's a challenge I've been given to cope with. Today I'm not coping with it as well as I'd like!!!