The standard protocol for treating mast cell disease is really simple: medication compliance and trigger avoidance.
Just two little things.
No. Big. Deal.
Take your meds and avoid all your triggers. That’s it! Simple (to say)! For me that translates to taking all seven meds every time, on time, and avoiding all 442,000,000 triggers (that I know of so far).
One of the worst mast cell degranulation triggers is stress. Physical stress, like vibration from a car ride or turbulence in an airplane, can trigger us. Emotional stress counts, too, of course. So we are supposed to avoid all of it as much as possible while trying to maintain our humanity, which is like telling a fish not to get too wet as it swims around its already too-small bowl.
It’s one thing to avoid cars and planes; it’s pretty impossible to avoid emotional stress as long as you’re still alive.
Yesterday our eldest son’s entire basement flooded. He just bought his first house a year ago at the age of 25 and we couldn’t be more proud of him. It’s a gorgeous little 1940’s brick craftsman on a quaint little tree lined street right near the main shopping in town. All of the homes in the area have been remodeled and updated recently and are really, really nice, inside and out, and his is no different.
Until his basement flooded.
They were able to figure out that it was a blockage in the line (on his side, of course) out close to the street. Which means he has to pay for it, or his insurance will hopefully cover it. The restoration crew is in there tearing out wallboard and pulling up all the new carpets that were put in just before he bought it.
It’s his first huge disaster/emergency as a home owner and as his parents we are being very supportive but letting him handle it, which he is doing brilliantly. He’s always been able to handle things well, which is why he is so far ahead of a lot of his friends in life and has a great job, owns his own home and drives a really nice car.
As much as I wanted to run over and get involved, I decided to stay home in order to stay untriggered. The old me wouldn’t have hesitated and I would have jumped in my car and headed to his place to help however I could. I would have probably been fine until an hour or so into all the drama before my mast cells would all go berzerk. Later I’d be paying for it for hours, or maybe even days, for sure.
So now that I know, I try to pull myself out of whatever drama or stress is going on and I’m trying to do it without seeming callous or cold. I make sure everyone knows it’s not because I don’t care, but because I have to do everything I can to stay un-degranulated.
The seven (!) medicines I take religiously now do help but to be honest, they only stave off the low-level stuff for me. They don’t stop the degranulation from happening if I do get triggered by a food or stress or a chemical or even too much sunlight and humidity (or a million other known and unknown things). It’s good that I take them or I’d be sick all the time.
There are way too many trigger possibilities going on with this disease and until recently I just didn’t realize how narrow my own view of that has been this last year since my diagnosis. I’m still wrapping my head around the fact that I have this disease and the enormity of it all is overwhelming.
It’s not just what I eat or drink or wear or breathe in or look at or feel or smell or touch. It’s all of those things. And more.
(Holy cow!) I am “allergic to the world” and I have to just accept it. I’ll take it a step further, I am also “allergic to being human”, especially being female since my own estrogen triggers me.
To stress is human, too, and avoiding it as a trigger is probably the most challenging and frustrating (aka stress inducing!) thing about living with mast cell disease. Sometimes I feel like I’m on Candid Camera, for real.
On a flip-side, I’m so happy the universe gave us Jack Johnson, though, because he definitely soothes the soul and helps bring me “serenity now”:
Ahhh. I love that guy!