A flare has me pretty disenchanted with the world right now. It also has me wondering if mast cell activation syndrome is the key to what keeps me in this strange cycle of never being able to sustain any sort of stability for very long. When you have an immediate, notable reaction to something that kicks off weeks of symptoms like I’ve been going through, it’s pretty hard to deny the direct link.
The irony is that I triggered a mast cell attack trying to address a different trigger. I noticed a little mold growing around my stabilization bar in the shower and I knew we’d run out of mold killer, so I picked up a gallon at Lowe’s and sat it in the floor of the back seat on my way to the grocery store. Well, it tipped over and I guess the lid wasn’t on very tight, so it began to leak. By the time I came out of the grocery store with a full week of groceries, my car was completely filled with the smell of bleach, which happens to be a very strong trigger for me going back to my childhood.
By the time I got home, I had a terrible headache and felt nauseated and confused. My lungs and sinuses burn and I’m coughing and congested. Things have snowballed into heavy fatigue and other signs of inflammation, including an overnight gain of 6 lbs. A couple days after exposure, I lost control of my bladder 3 times in 2 days, a very strong sign that I have an overabundance of histamines. Then the subluxations and dislocations hit because the inflammation always affects my joints. For three days, my left collarbone refused to stay in place. One of my lumbar vertebrae popped out for 24 hours, and both ankles collapsed.
To make matters worse, about 5 days in, I dragged myself to pelvic floor therapy hoping it would be the kick in the pants I needed, only to be confronted with a mop and bucket, the smell of bleach filling the wet hallways. This kicked things into overdrive, at least doubling the amount of time I was affected by all this. I could have just died when I walked in there and smelled that smell.
Now it’s been almost two weeks and I’m still struggling and trying to identify things around my house that might be contributing to my histamine load because I can’t seem to stop coughing or kick the fatigue. I can get the inflammation down superficially for a day or two by taking a toradol shot, but it just shoots right back up. I still can’t seem to get any real energy up and everything hurts. Even doing my pelvic floor therapy is a challenge. I have therapy again in two days, but I’m wary of leaving my house and keeping the cycle going.
To this point, I’ve avoided trying the histamine diet because I’ve had a nice long streak of doing well and haven’t had any noticeable changes in symptoms when I eat some of the things that are listed on the histamine diet. I mean, I try to avoid big triggers like bleu cheese, jalapenos and alcohol (both for POTS and MCAS), but I’ve tested tomatoes and have never seen any correlation in symptoms with them like I do when I indulge in a glass of wine. Generally speaking, I’d say that’s probably fine as it works for me, but I wonder if during a flare I shouldn’t be more careful, trying to get myself back under that magic number until I can get stabilized. I’m really still learning about mast cell and how all this craziness works. I don’t even have a diagnosis, though it’s pretty clear how much these things trigger me.
I guess if anything, this experience has caused me to reexamine the historical patterns of these unpredictable cycles and makes me realize that getting a diagnosis and some help with these problems is really going to be key for me ever finding any kind of stability in my condition, if that’s even possible. There are drugs to try that might help and if I want stability they are probably my best chance. I’m already on zyrtec, zantac, flonase, and singulair. I also take benedryl whenever necessary, and used to have an over the counter inhaler, but can’t find one of those anymore. What I probably need is a mast cell stabilizer like cromolyn.
I’ve been putting it off forever because in part, it’s like getting autonomic testing. They make you come off all the drugs and everything that’s protecting you from all the triggers and symptoms, so they can test you for it and it’s a huge disruption to your life and what precious wellness you’ve managed to make for yourself and there’s no guarantee that they’re going to capture you in the proper state even when you do. And even if everything goes as planned and they do get the results necessary to treat you, it just doesn’t seem like there’s that much they can do to help other than give you a drug or two to try, or throw you in a mask and say, “Yep, this is your life. Good luck living it functionally.”
Maybe that’s the decades of rejection and hopelessness talking. I hope it is. But it does often appear that way as a rare disease spoonie. Diagnoses feel good because they’re validating, but they so rarely ever lead to any significant improvements that it becomes disheartening to continue to pursue them, especially in the face of white coat syndrome, which is getting a little better since I switched to the University system hospital, but still something I have to battle through every time I walk through the doors of a medical office.
I suppose if, NO, WHEN I go through testing, I will simply have to open up that bottle of mold cleaner and take a huge whiff and then I know I will definitely get the reading intended. Of course, if I do that without all my meds, I could possibly have a real anaphylactic reaction and kill myself, but at least I would have an answer, lol. Maybe I should stick with something slightly less lethal, like 15 minutes in the sun. LOL. Allergen Roulette, anyone?