Originally posted on Scleroderma, Sarcoidosis and Box Wine on Wednesday, December 16, 2009.

I have been told my whole life that God has a plan. That we are here on earth preparing for the afterlife and everything happens for a reason. As I child, I went to bed every night afraid I “would die before I wake”. Until I was twelve, I tucked in my four stuffed animals and would lay down between them and the wall in my twin bed. Maybe I thought angels would take my stuffed animals instead of me. I did the sign of the cross, and silently said an Our Father, Hail Mary, Act of Contrition and asked God to bless everyone I could think of. On days I got in trouble, I would say a rosary- which was usually every day. After years of soul searching, nights of drunken stupors, years of angry words and of course, spending the 4th grade with bat-shit crazy Sister Kathleen, I have come to the conclusion the plan is- there is no plan. I had to accept anything can happen and I live in WhatTheFuck?-ville, Planet Earth.

Ten years later in 1992, the first signs appeared. They asked if I got regular periods. Several doctors at Balboa Naval Hospital told me this was all in my head, that I drank too much caffeine and maybe I need to quit taking birth control pills, (because nothing is more hazardous than preventing pregnancy-right?). Then, in 1994 at the VA in Madison Wisconsin, I was diagnosed with Scleroderma. Three months later I could almost pronounce it and one year later I could spell it (Denial? -oh hell ya).

I was in nursing school at the time and one of my textbooks had an exquisite picture of whatScleroderma could do to my hands. Crying hysterically I called my ex-boyfriend. I think anyone who saw this picture would have found it horrifying. Today I look at my curled fingers and frozen hands and laugh about how my ex-boyfriend told me I was being paranoid.

I have been to dozens of doctors. I have been prescribed “homeopathic” and “Natural
Remedies”, only to have them make my condition worse. For some reason it felt empowering to go ‘off the grid’ of western medicine. It made me feel in control. Before moving to WhatTheFuck?-ville, I made Denial my home.

I don’t waste my energy on anger and have no time for depression. I gave up on bargaining. Denial is my greatest defense mechanism and acceptance is not an option. Every now and then one of the five stages of grief worm their way into my head. Fourteen years, is that too long to be in therapy? What’s theanniversary gift for 15?

I am told that God has a plan and everything happens for a reason. I disagree. If he does exist; he created us followed by a series of random events he thought he could control. That’s no plan- he’s just as confused as I am. If he does exist, we are most likely floats in a terrarium he keeps in his office where he resides in WhatTheFuck?-ville, Universe, where he sits at his desk and procrastinates about writing poetry. Just like me.

Additional Links: CREST Syndrome
Elisabeth Kubler-Ross