Walking into the Cleveland clinic on January 14th I had high hopes for a diagnosis. As odd as that may sound, anyone who has gone through a similar experience knows that a diagnosis equals a plan of treatment. However, I was under the assumption that I was going to be given clear instructions. I thought the doctor would become the caption of my ship steering me safely to the shore.
However, MCAS is a very complex and unique illness. Although there are standard treatment protocols the illness varies greatly from one individual to the next. Meaning, what triggers my mast cells to degranulate (release histamine and other inflammatory chemicals) may be considered a “safe” food for another patient. After sitting with the doctor for nearly 2 hours my head was spinning with information. Walking out of that office there was only one thing I was certain of. In order to improve my health the captain of my ship HAD to be me. I had to take charge. Although I had people there to guide me, I ultimately had to take control.