This week, I am celebrating TWO YEARS of mast cell activation syndrome (MCAS) remission. Most of my fellow skaters have no idea how terrible and scary my MCAS symptoms were from 2015-2021. They don’t understand how impossible skating was for me before remission. I look “normal” aside from my steady bursts of humor and wiggles.
Note: Competitive skaters with less severe mast cell activation (MCAS) symptoms do exist. I’ve met several of them! MCAS symptoms can range from discomfort to disability. My remission is incredible is because of the severity of my illness despite years of proper treatment. Many doctors gave up on me. I was told I would likely never be able to use stairs, let alone compete in athletics.
I never want to take my remission for granted. I never want to forget how without treatment, MCAS complicated every aspect of my life: eating, moving, sleeping, socializing, and breathing. Some people keep a gratitude journal; others do daily meditations.
I practice gratitude by counting the ways my pre-remission mast cells would have tried to kill me every time I walk into a skating competition.
First, assuming I could tolerate the usual fragrance (perfume, shampoo, detergent, deodorant, etc.) of a public event, one whiff of hairspray would swell my throat before I could set my skate bag down.
For me, this usually wouldn’t require a stab in the leg, a ride in a fancy taxi, and an expensive hospital bill with a side of medical gaslighting. (Like many MCAS patients, I haven’t had to use an EpiPen, but I definitely carry one.)
Hopefully, I would be able to force pills down my throat and play the game: should I stay or should I go?!
Obviously, fleeing toxic air is always a good idea.
Why would I stay? To overcome my disability and skate anyway? Absolutely not.
I would stay because of the bathroom, projectile vomit, and uncontrollable pooping. I don’t like squirming out of my skating dress on a good day, so I can’t imagine doing so in a full body rash. Best case scenario: I empty my guts and someone drives me home where I recover for three days.
Okay, so let’s pretend I got a disability accommodation to prohibit hairspray inside the arena and nobody smells like MCAS death.
My mast cells don’t like the cold. Once inside the arena, my mast cells would begin pumping chemicals into my blood–dilating and permeating my vessels. This can trigger poor circulation, dizziness, and weakness–a recipe for skating disaster. My numb, tremoring hands would likely need help tying my skating.
So why not just warm up? Well, my mast cells don’t like that either. Just a few off-ice waltz jumps would be enough to the ignite the inflammatory process–pushing my lungs, heart, and brain into overdrive and destabilizing my hips and feet.
As my body would swell, every rhinestone on my dress would be at risk of spontaneous ejection. Other skaters would attribute in my urgent and incessant need to pee to performance anxiety, when really histamine would be inflaming my bladder and literally making it smaller. In bathroom mirror, bright red rashes would outline my dress as my skin reacted to the synthetic fabric–definitely not the pretty lines Griffies aspires to.
No matter the temperature, I would be spinning before I got on the ice.
This where my gratitude practice ends.
Don’t worry, Coach Debbie–when I check in with the rink attendant, I stop envisioning my demise.
When step on the ice, I don’t think about my mast cells at all. I take a deep breath and my body swells… with gratitude.
6 thoughts on “Mast cells on ice ”
What an incredible story of remission! I’m so happy to hear you’re able to enjoy skating again. I’m in a mini-relapse now, so mention of perfumes and synthetic fabrics is making my skin crawl. I’m so grateful you’re free of those worries, at least for now. 😊
I can completely relate to you gratitude practice! My life was so restricted for so long that it’s impossible to take the little things for granted anymore.
Thank you for reading. I hope your mast cells stabilize again soon.
I am just going through the process of figuring out a diagnosis. I’m reading your blog and feeling so seen. After a POTs, Endometriosis (surgically treated) and interstitial cystitis…things aren’t better and infact I’m in a flare of all 3. Oh. Forgot about the seemingly perfect gallbladder but having textbook gallbladder attacks (yesterday all day and night) your blog is making me realize I need to take it further even if my own family don’t believe me.
Thanks for reading! I hope you can get access to testing and evaluation for MCAS soon.
Yours is an inspiring story – long may it continue!