My Whole World

My Whole World

Thursday, December 19, 2013

Confluent and Reticulated Papillomatosis Update

More stitches in my back. I had more biopsies taken to figure out what I have. They took pictures and possibly every doctor in a 20 mile radius, came in my little white room in the corner. White coat after white coat had the same expression of confusion and bewilderment. Neither are a good sign. I still have no answers or possibilities.I once was told CRP, and at one point Darier's Disease, but now I have no answers. Back to the blank canvas of wonder.

I do not want to post a picture. I thought at a point in my life that I could move on and not focus on the insecurities, or feelings of shame because after all the months and months of minocycline, accutane, creams, steroids, and random treatments, nothing. I have no control over this growing disease on my body. I gave up. After the treatments, money and lots of pain.... I gave up. I could no longer subject myself to anymore "trials" or "experimental treatments".

Then it started looking darker, and growing at a rapid pace. I started noticing it getting worse, but really stopped caring. Although I wear t shirts everywhere I go because it is high on my chest area and up the back of my neck, so maybe I do care if people see it...

Then I saw my primary care doctor. He was concerned and lectured me about the risk and he sent me to get it looked at by my dermatologist, who now has sent me to see a specialist at the U of U hospital. Now I wait. Now I care again, and now I have a glimmer of hope, that maybe someone will figure it out and help me.

Please don't let me down. Give me a diagnosis and let their be a treatment that works.