One of the most frustrating aspects of mast cell disease is every patient has different triggers. The only way to learn is trial and error – it’s less like learning to ride a bike, and more like trying to run through a minefield. Oftentimes, success is measured by how many days in a row you’ve managed to stay out of the hospital.
Last week marked the two-year anniversary of my diagnosis. I’ve learned more about mast cells than most doctors, and yet, every day feels like a narrow escape. Even when I feel fully prepared and hyper vigilant, my mast cells surprise me – less like someone jumping out and shouting boo, and more like a coup d’état. My mast cells are ungrateful haters with a questionably dry sense of humor.
Here are the top four triggers that blindsided me this year:
This year, I discovered my mast cells hate plastic – clamps of IVs tubes; the shell of my FitBit; hospital wristbands. While they are not life threatening reactions, the rashes are painful and unsightly. Now I’m reacting to the nose pads of my glasses, even though I’ve worn them for the last four year. Of course, I have contacts… but those are plastic too.
#2 Ureteral stent removal
Need I remind you of my most painful reaction of the year? Of my life? I’ve already covered this in detail, but in short, my mast cells revolted against my ureteral stent REMOVAL. While I had prepared for a reaction to the 8” plastic stent being shoved up my pee hole, my mast cells decided to protest four hours AFTER its removal. And now I’m a urology legend.
#3 Wall art
Leading up to my kidney surgery, I was feeling a bit down, so I ordered a large canvas painting of birch trees to enjoy while I recovered. When it arrived, I unpacked it from its box and leaned it against the wall to admire the vibrant colors. As if I was in the forest myself, the scent of pine filled my lungs and I broke out in hives. The frame was made of pine, my most severe IgE allergy.
#4 Pumpkin scone
Every fall for as long as I can remember, I have stuffed myself with pumpkin bread and pie. This is why it took me two weeks and three pumpkin scones to realize why I was losing my vision and passing out in my office. The specific culprit? Soy.
Did your mast cells pull a fast one on your this year? I’d be surprised if they didn’t. Share your story in the comments below.