# alexis is allergic

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Sunday, July 14, 2019

Your world kind of just crumbles every time a doctor tells you that they don't know how to help you. You just spent at least half an hour in the waiting room, wiggling your foot back and forth, another half an hour in the actual room after getting your vitals taken by the medical assistant who doesn't understand that her perfume is making it hard to breathe because "she's worn it every day and it's never given anyone a reaction before"and now the doctor tells you that he doesn't know what to do because the easy way out is a different medication, but you can't take anything since you're allergic to it all and you realize that you just spent a chunk of cash that'll be applied to your deductible but was a waste for your health."I'm sorry" comes if you were lucky enough to find a physician that had a good bedside manner. And every time, your heart breaks a little bit more. It starts to tear apart your mental stability. You're failing. There's no longer control. Your body is no longer yours. Being disconnected from yourself is an entirely different sensation. You have no idea what's going to trigger you on any given day. Am I going to need my mask when I go out today? Can I fit the entire bottle of benadryl in my purse? Will I be able to walk through the grocery store without falling down? It's a guessing game with what your body decides to do.
It started with an avocado. Then a piece of fish. Finally, a banana almost killed me. With each week, then day, going by, every piece of food began to give me a reaction. A year and a half later and I got diagnosed with Mast Cell Activation Syndrome. It took a fifteen months to find a doctor that was willing and (kind of) able to help me. And in the past six months, I've had multiple appointments for blood work that all comes back normal, a genetic test that unexpectedly came back positive, a MRI of my brain, autonomic test that I thought was going to kill me, so many antihistamines, sick appointments, emergency room visits, weight gain and hair loss, and lots and lots of tears (crying makes me react, so this was done in the safety of my own home with my epi-pen and benadryl near by). I still have a skin biopsy scheduled, an EMG, a follow up with my neurologist and so much more that isn't planned but I'm sure my body is just getting prepared for, because apparently with MCAS, comes along other rare diseases that my body kind of just threw up all of these symptoms for at one time.
At this point, while I sit on the couch in a hoodie from some indie show (check out 'rx soul', 'whstle' and 'ufoufo') that my sister in law and mother in law took me to, I am scared. I'm finally actually scared of my own body and what it has in store for me. Because you kind of just prepare yourself before every appointment and test, thinking "okay, if it goes bad, this is what's going to happen and I can deal with it". But then those things really happen, those words literally come out of your doctor's mouth and you are absolutely crushed. So here I am. Broken, allergic, hardly any circulation to my extremities and scared.

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