The speed of falling apart

I saw my GI mast cell specialist today.  I have not been looking forward to this appointment.  I find that whenever the shit hits the fan with my health, it is always him telling me things I don’t want to hear in the small exam room at the end of hall. 

I am having major GI issues.  I am nauseous.  I vomit up most of what I eat.  I am reacting not just to food, but to the actual process of eating.  Beyond this, I have had a major change in lower GI symptoms.  I am bleeding from multiple places and spending a lot of time in the bathroom.  My abdomen is swollen and sore again.  If I lay back, I can literally watch myself digesting. 

We went through all my symptoms.  I told him about my endocrinologist appointment and filled him in on some conversations with my immunologist.  He examined me and palpated my sore abdomen, could feel that my colon was swollen. 

“Your problem is proliferation,” he said.  “If you started with two million mast cells, now you’ve got a hundred. Or more.”  I know.  I didn’t have anything helpful to add.  I really hate when I can’t pull useful more information out of my brain because it doesn’t exist. 

I already have a good surgeon, so he agreed to talk to him and get back to me on who wants to order what.  I will definitely need another colonoscopy with biopsies, at the very least, before they decide what to do for surgery.  He called my GI distress “incredible troubles.”  I laughed when he said it.  “Your troubles, they are incredible,” he clarified.  “A lesser person might not do so well.” But I didn’t feel like I was doing well today.  I wanted to go to sleep, quiet and numb, for as long as I could. 

I have said several times that this has been a strange year.  I feel like I can’t express what I mean by that properly.  While I have gotten sicker this year, I have at the same time found an increasing sense of peace.  I feel like I am helping people, and that was only possible because I am sick.  I learned about mast cell disease because I am sick, and I met all these people because I am sick, and I like this life, that I have because I am sick.  All of this is a side product of being sick. 

I skyped with one of my best friends tonight.  “I feel so guilty because I love what I do and I love all these people but it’s all because I’m sick and I don’t want to be sick anymore,” I cried to her.  I had a good long cry.  It was one of those days. 

But in the dark moments, when it feels like my soul is trying to swallow itself whole, I remember this year, and how as time goes on, I somehow feel less and less at odds with my disease.  I somehow feel the anger subsiding, feel this overwhelming calm as I learn how to live in this body each day. 

This year has been weird.  I am self actualizing at the speed of my body falling apart.