Mast Cell Disease Awareness Day Thing #1: Meds 1

First meal of the day.

I wasn't gonna do this because I've been really self-conscious about sharing lately, but someone kinda gave me a nudge.

Mast cells are these little regulatory powerhouses that are located all over our bodies. They're in our digestive tract, they line our lungs, they're incorporated into our optic nerve, they're in our skin - they even play a role in what crosses the blood-brain barrier. When they work correctly they do everything from protecting us from disease to aiding in the fight or flight instinct.

When they work incorrectly, though, it can be a pretty spectacular fail. There are currently two recognized forms of mast cell disease. The first, mastocytosis, has been in the literature for decades and involves having way too many normally-behaving mast cells. The second, mast cell activation syndrome (MCAS) became an official diagnosis in 2010 and features the right amount of mast cells but they're super hyperactive. Both diseases result in too many hormones and transmitters and things beating the body down for what seems like an endless and ever-changing list of triggers, both internal and external.

We'll talk about meds more later (I have about five med moments each day) but I wanted to point out the liquid one in the little vials here. Most mast cell meds are kinda blindly thrown at symptoms but this one is one of the few mast cell stabilizers. It essentially tells the mast cells in your stomach to STFU for about four hours, hopefully allowing a bit more success at eating. The white capsule does much the same for the intestines, although they seem to have some effects outside of that role. Do they work? I've found the vial has decreased in effectiveness as my condition has progressed (more on that later, too) but I got some extra help from the capsule. I'm still quite limited but nowhere near as bad as I used to be.

...oh, the ginger ale? Yeah, so I get what I call "food shocks" where if I eat something (safe) and my mast cells aren't used to having something in the system they'll all freak out and send me into anaphylaxis and some pretty hefty nausea. That's easy to do in the morning, and last night I fell asleep on the couch which drastically increases those odds. The ginger ale gives me some gentle calories immediately after taking my meds. For clarity: all medication pictured here is used to treat MCAS and allergies, which has a significant overlap.