Mast Cell Hell

I’m beyond aggravated with this whole mast cell situation. Just yesterday I began to feel better for the first time in two weeks, but as soon as I left my house this morning, I got triggered all over again. I can’t even go for my pelvic floor therapy without getting triggered. I walked through the doors and the whole place reeked of bleach. Then I sat down in the outpatient therapy room and had to leave because two different women smelled like they bathed in their perfume. I was a headachy, snotty mess by the time my therapist called me back. I told her if I don’t get my masks in by next week, I may not come, but she showed me a tiny waiting room I can go to that no one ever uses where I can wait for her next time, in case they aren’t in by our next appointment. Given the bleach situation, I don’t feel completely comfortable with that, so I hope my masks come in time. I really don’t want to set myself back in my therapy.

What really sucks is that it’s interfering with my progress in several areas. I was just getting back on my feet after trying to drive with Uber, so I was just getting back to where I was with exercising and rebuilding my muscle. I was also just starting to make strong strides with the pelvic floor exercises and it’s still going well, but both my therapist and I can tell it made me weaker and it was slowing my progress and ability to do as much.

Another major bummer is that when my histamine load gets really high, it begins affecting my bladder and I start having accidents. When this happened last week, I completely freaked out until I put 2 and 2 together. Histamines get expressed through our urine and histamine overload causes bladder burning and pain and can cause incontinence when it’s bad enough. This confirms for me that pelvic floor dysfunction wasn’t my only problem in this department. Part of me was really hoping I was wrong about having mast cell, but it’s becoming more and more undeniable.

At least this prompted me to put in a call to the local mast cell/allergy specialist, something I’ve been waiting to do for way too long because I kept thinking seeing other specialists were more important. Now I’m thinking that since I didn’t really understand how MCAS works that I really have no idea just how much it might be contributing to keeping me down and if I have more help and medication support for the real allergies I have, I might get somewhere. I spent a good deal of time reading about some of the medications and things I can use that might help. Many of them I already take, but there are still some to explore. This seems like a pretty good site for this kind of info, in case you’re interested.

So I guess I’m going to be wearing masks out until I can get this all in check again, which may not be until next winter. I’m beyond tired of being exhausted, dealing with constant subluxations and dislocations, headaches, breathing problems and so on. I’m nervous about it. I hate using my wheelchair and braces and cane and anything else that makes me stand out and I don’t like the way people treat me when I do. I can only imagine how they’ll react to me wearing a fucking mask. I don’t know if I’d be better off decorating them and making them my own or leaving them as plain as possible so they better blend in with my face. I’m also claustrophobic, so I’m not crazy about having things on my face in the first place.  If anyone has any advice on pulling this shit off with dignity, I’ll take it, lol.

Mast Cell Hell Pin

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