Guest Post: The Unknown World – by Amber

Amber has been kind enough to write up a post to give everyone some more insight on her disease. Everyone’s support has been great.

Welcome to the world of the unknown. Today in 2018, I feel so blessed to be in Oregon with Alan and Elena – my loving and supportive family. I am reminded daily of how strange and mysterious our world and the science behind it, really is.

This is a story of our journey. After all, any health issue affects the entire family and friends, not just the individual.

Hi. My name is Amber. I am a mother and best friend to Elena and Alan Sherman. I was an avid runner just like Elena’s daddy, Alan. I ran marathons and trained alongside him. Little did I know that the last half-marathon I ran in the spring of 2006 would be my last.

Only four weeks later, I would wake up with strange unknown symptoms that would take me ten years to piece together. And, yes, through my own research, I diagnosed my own disease, found a specialist, and through self-treatment am living a full life.

Some of my doctors ask, “Where do you hurt?” and I say, “Everywhere.” They also ask, “What symptoms do you have when you get hot?” and I say, “My hands turn bright red. I feel like I’m shaking. I’m in pain and nauseous.”

Thus, began the unending visits to doctors to figure out what was wrong with me. After all, it wasn’t possible for a person to have four systems (cardiovascular, neurological, endocrine, and gastrointestinal system) not working at the same time. Could it be possible? Yes. I just got lucky.

I have a very rare disease known as mast cell disease. Very little is known about the disease.

Based on my review of the scientific literature and having spoken to over forty doctors at some of the best hospitals in the country including NIH, Hopkins, and Walter Reed, mast cells play a role in the immune system. The literature seems to suggest that these cells probably play a role in most diseases and cancer. There is some speculation that mast cell disease is an autoimmune disease. But, we don’t really know mast cells role because there are only approximately 350 cases in the world based on the World Health Organization.

Like I said, “I’m lucky!” By the way, “Did you know that all autoimmune diseases are one disease?” Yep. Just a little factoid.

Based on my own self experiments, I believe mast cell disease is an autoimmune disease. There is no known cure and very little treatment. Most people that get it are disabled. Unfortunately, it often turns into cancer or mast cell leukemia. If that happens, I’m implementing my Bucket List. 😊 But, with the help of friends like you and the love of my family, I’ll die an old and crotchety woman.

Every day is an unknown. I don’t know what’s going to set it off but through diet and mindfulness meditation, I’m able to manage my disease.

My disease has taught me about the beauty of life. I’ve learned not to worry about tomorrow. I only focus on today. And, if I’m having a really bad day, I may only focus on the moment. Moment to moment. Breath to breath.

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