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Mast Cell Activation Syndrome: My Body Is Trying To Kill Me

Mast Cell Activation Syndrome: My Body Is Trying To Kill Me

anaphylaxis chronic illness chronic pain epi pen mast cell disease naughty mast cells rare disease warrior yet another new normal Feb 23, 2021

I thought my time away from social media would be focused on adjusting to not having my infusions due to insurance issues (still an ongoing battle but I’m not dropping it!), but my body had other ideas.

After experiencing anaphylaxis for the first time as well as a bunch of other “lovely” new symptoms, I was diagnosed with Mast Cell Activation Syndrome (MCAS). I’m also getting some gene testing done to see if I have this other type of mast cell disease. I had suspected this diagnosis for years, but I had to focus on other things, like neurosurgery!

Four times a day I have to take liquid meds mixed in water and I now have to carry an EpiPen with me. MCAS is a special kind of a$$hole as I can be allergic to anything at anytime, and it can change. So one day I may have a reaction to strawberries or a lotion I’ve used forever, and the next day I could be okay. Or my body decides to hate strawberries or that lotion forever. There is no rhyme or reason, my body just wants to try to kill me.

Currently I am in a Mast Cell flare so my body hates everything I eat. My gums and tongue are constantly swollen and constantly burn. I also have random rashes and hives all over when my body decides it didn’t like something in my environment or just because. The list of symptoms goes on and on…

So that’s that. Onward I go!

Below infographics taken from

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