What MCAS looks like to me

This is such a rare disease, I know of 2 other people in the Valley who have it. Because it's so rare most people don't know how it affects people. Here is what MCAS looks like in my life.

*I have constant stomach/GI issues. Most foods don't taste good to me and many make me sick.
* I have almost constant deep bone pain with the majority of the pain in my hips and legs.
* Taking a hot shower completely wears me out. Once I take a shower I often have to sit on my bed for 15 minutes just to get the energy to get dressed.
* I sweat crazy amounts and at crazy times, usually there is no reason for it.
* I require a lot of sleep. On Sunday we spent the afternoon at my in-laws eating dinner and putting a puzzle together. The next day I slept until 10:00 then was asleep, for the night, by 4:30.
* I take medicine 7 times per day. This includes 20+ different medications, 4 inhalers and a nebulizer.




* Smells at anytime can send me into anaphylaxis and I never know when those smells can affect me. I love good smelling thing; perfume/cologne, scentsy, shampoos. I don't get to enjoy any of these anymore.
* Since the end of December I have spent 18 days in the hospital most of those in the icu with hallucinations.
* I can react to about anything including band aids and tape. The tape used after my surgery caused me to blister. The red lines in the picture below are actually tiny blisters.






* My emotions are all over the place, as a disease that depression and anxiety are organic to, or naturally comes along with the disease, I'm glad that these are under control as much as they are.

I'm sure there are lots of things I've forgotten. But these are what I'm thinking of right now. So, as we interact please be patient with me.