F**K SURRENDER: Dysautonomia and MCAD

My life for many years has been about surrender. Today I am saying: FUCK SURRENDER.

One out of every six people who read this could be suffering right now from Mast Cell Activation Syndrome or Mast Cell Activation Disorder. I think I am one of those people. I am starting on my quest today to prove it.

For those who haven’t known me for years, let me explain.

When I first wrote my first book, I signed with Llewellyn Press and then promptly took suddenly and lifealteringly  ill. Even though before that my life had been marked by seriously strange and rare occasions of horrible illness. It was nothing to the horrible downturn my health took after signing. I lost my contract and all the pre-book momentum I had worked to gain. I withdrew from the scene related to the book to like my wounds and learn how to deal.

I had a litany of strange and weird illness strike me down with even stranger presentations before that notable downturn. All these times of weird eventually cleared up and I was left with, “Wow that was medically strange.” Not an explanation, mind you, just “weird.”

Nearly everyone who reads this blog knows that this eventually has lead me to a diagnosis of familial or congenital neurocardiogenic syncope, an extremely rare and verifiable disease. One I had verified at Vanderbilt University. What most do not know is that this disorder, genetic condition DOES NOT really explain all the other weird symptoms and tribulations my body puts me through on a daily basis.

Enter Dysautonomia.

Dysautonomia is an umbrella term used to describe disorders of the autonomic nervous system (ANS)  (Freeman, Goldstein, and Thompson 2015). I liked this term because I felt it better described what I was experience: a whole bodily system failure. For many years I have religiously followed Dysautonomia International, an organization for connection with others who suffer, research, and dissemination of information.

Recently this lead me to purchase the book The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients. Also those who follow know that about six weeks ago, anomalies in my son, Tree Bear’s test results have me worried that he is similarly afflicted. I received my copy this week and read it in one sitting.

What gave me pause was the chapter called The Triple Threat: POTS, MCAD, and Connective Tissue Disorders in the Dysautonomias, by Lisa Klimas, MS (Freeman, Goldstein, and Thompson 2015; page 131) and another chapter called Mast Cell Activation Syndrome, by Lawrence B. Afrin, M.D. (Freeman, Goldstein, and Thompson 2015; page 135. I read these chapters with a sort of out of body understanding noting how many of the symptom boxes for MACS I could personally tick off.

As is my way, I sat on that. Yesterday, I ended up at a quiet dinner with my husband and was telling him about these chapters, upset I couldn’t remember the acronym. With a little help from Google, I found it and started using Wikipedia to tell him about the disorder. He was, like I, cautiously optimistic about how many of the symptom boxes I check off. I went home and re-read those chapters and noticed that Afrin had a book out called Never Bet Against Occam. The book was expensive and I downloaded it anyway. After about two hours, I was completely freaking out. This book could accurate describe and explain every single “weird” medical thing I had ever experienced.

As I read I learned that Afrin and others had successfully diagnosed these people with an actual disorder AND TREATED THEM WITH GREAT SUCCESS.

and treated them….

with great success……

I started reading out loud some of the excerpts from the book. My husband at one point said, “You made that up. The book doesn’t say that.” I turned the Kindle around and pointed. He sat there mirroring my absolutely stunned expression. My husband asked, “Did he [Afrin] interview you?”

I started to cry.

This morning, after some research, I made an appointment with a recommended doctor in Atlanta. I have an appointment with my dermatologist for the lesion on my leg and I know what test and biopsy I want them to do in preparation for the evaluation with the new doctor next week.

Those who suffer with chronic weird diagnosis suffer with a constant battle between the idea that you are making stuff up and knowing in your soul something is really wrong with you. The thought that there is treatment that might alievate this fatigue I battle daily is…. undiscribable.

My husband worries I will get my hopes up again with no resolution.

I am worried that I am going to suffer the rest of my life trying to fulfill all the god and goddess have called me to do with a broken body.

Even if it isn’t MCAD or MCAS; it gives me hope that not all the answers about the bodies problems have been revealed yet and I am not crazy.   My body may be broken and my mind is just fine.

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