Maydays_Fallout

When I was in 2nd grade I had my first ever MCAS induced migraine. It happened during a school assembly in which my favorite author at the time was speaking to our class and signing books. I was basically sitting there on the gym floor sobbing because I was in so much pain, and also lost control of my bladder in front of the entire class and my favorite author

Trial and error honestly lol. I monitor my heart rate to make sure I'm "safe". We also try to minimize me touching fluids such as sweat and ~other stuff~. I also do what I like to call "pregaming" where I pop an extra benadryl and a zyrtec before we get down to business lol

Despite being allergic to my emotions, I like emotional music. Anything along the lines of Fallout Boy, Mayday Parade, The Maine, Panic! At the disco, etc. So pretty much any emo, alternative, or pop-punk type stuff is my jam

I'm sorry that you guys are going through this. Honestly it is a very difficult journey, but it is doable. I got lucky. I had never heard of MCAS before I was diagnosed. I went in for an allergy skin prick test to renew my immunotherapy shots, and my allergist said "it's impossible for you to be allergic to this much. Something else is going on". He knew of MCAS so he knew what symptoms to look out for. He did very minimal testing. First he made me read off which symptoms of MCAS I had based off the wikipedia page. I had all but the two bone ones. He scraped a tongue suppressor across my back to test for Dermatographism. He then did a blood test for serum tryptase. It came back negative, which is usually indicative of MCAS (positive is more for Mastocytosis) so that confirmed his suspicions. I didn't have to do the bone biopsy or anything like that which is nice. There is a fantastic support group on Facebook called Mast Cell Activation Syndrome Community that has a map of competent physicians who know of MCAS and are able to diagnosis, and treat you. They also have subgroups for each region of the US, as well as for other countries (I'm the moderator of the one for the Midwest). I highly highly recommend checking the group out!

I have both mild and severe reactions! My reactions to things change from day to day as well. So one day I could only get a small skin rash from soy, but have severe life threatening anaphylaxis the next day from the exact same ingredient. Living everyday life is definitely difficult. I have two $300 air filters in my one bedroom apartment running constantly, I cant eat leftovers, have to take a total of 27 different meds daily (as well as two shots monthly), have to constantly monitor my blood pressure and heart rate, and any time I go outside or open a window I have to wear a special n95 mask to filter the air