Mast cells on ice 

Ice skater in a pink dress

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.

Finding my balance

Figure skater posing on frozen lake

On December 22, I celebrated 7 years of MCAS diagnosis. Yes, I say celebrated, because getting a diagnosis in 2015 was almost unheard of and without it, I wouldn’t have been able to advocate for myself and get treatment.

This is how I describe the past 7 years:  

  • 2016: Total destruction and despair
  • 2017: Renovating my life
  • 2018: Building a support system
  • 2019: Survival and self-advocacy
  • 2020: Dreaming again
  • 2021: Adventure and feeling
  • 2022: Finding my balance

Please note: the majority of MCAS journeys are not this extreme. Many people with MCAS are undiagnosed because their symptoms are not severe.

My 2022 holiday card

Remission has been interesting to navigate. Sometimes I catch myself subconsciously living like I am still controlled by MCAS. For example, for 5 years, I didn’t have enough vacation time to even consider taking the time off between Christmas and New Year’s; all my paid time was spent on MCAS reactions. Last week, after receiving my 9th auto response from a coworker, I seriously had to reassess my choices. I no longer need to fear going to losing my job because I want to spend two days relaxing and eating cheese. 

Last year, I had an unsatiable desire for adventure–not knowing what I liked or how long my remission would last. This year, the urgency subsided (but not my gratitude!). Instead of chasing adventure, I took pleasure in building habits. Until remission, my mast cells never permitted routine.

I did literally work on finding my balance: scratch, camel, and sit spins. However, the hardest work was learning how to balance adrenal insufficiency (a life-threatening complication of MCAS) and my newfound love of athletics. Although I’ve met plenty of competitive skaters with MCAS, I have yet to meet another competitive skater with adrenal insufficiency, because exercise requires cortisol. A few ruthless adrenal crises reminded me: even though my body CAN go longer, faster, or higher, it doesn’t mean I should. I need to really WANT to do the thing. And then stress dose accordingly. 

Speaking of stress dosing, isolation is terrible, but this year, I re-learned that human interaction is really complicated. It’s easier to set boundaries when you’re deathly allergic to people. Other people’s expectations are especially rampant in the figure skating world. You can’t go a day without hearing “axel” and “Olympics.” Meanwhile, I’m sliding around in a pumpkin costume, most interested in “joy.”

Two weeks ago, I found myself skiing 7” of wet, heavy snow, being chased by a professional race coach yelling, “Right, left, right.” My trembling muscles warned me this would not end well, but I told myself to be grateful for this unexpected private instruction. I did not feel grateful a few days later hugging my toilet in adrenal crisis and vomiting so hard brain juice shot out my old CSF leak. 

Remission or not, life is messy. I’m not making any New Year’s resolutions because I’m not pretending to be in control. Joy is my compass, gratitude is my motivator, and humor is my Band-Aid for when I inevitably get my ass kicked.

In case you missed it, on October 30, I had the pleasure of reconnecting with Dr. Afrin, my MCAS specialist from 2015-2017, in a live MCAS Q & A hosted by Mast Cell Research. Watch the recording.

And thank you to my Patreon supporters for keeping this blog going during 2022!

Trial and error

Ice skater falling

When I first was diagnosed with mast cell disease and learned my mast cells were overactive, I decided, “Okay, I’ll just be really nice to them. I’ll give them everything they want and they’ll settle down.”

Turns out, nobody, including the world’s leading mast cell activation syndrome specialist, knew what MY mast cells wanted.

Instead of receiving a set list of treatments, my doctor introduced the trial-and-error process, a methodical approach to medications and supplements, slowly and one at a time. 

Struggling to eat, move, and sleep, I wanted to say, “Excuse me, sir. But I believe I am dying. I don’t have time to waste. I have bills to pay and dogs to feed. Please fix my mast cells now.”

Luckily, I heeded his guidance. At first, I improved with each incremental change: my joints ached less, my intestines were happier, and I had more energy. Each time he added a new prescription, my specialist warned me MCAS patients often react to inactive ingredients (e.g. fillers, dyes, binders, and preservatives) in medications, and to be mindful of any new symptoms.

“Which ingredients?” I asked.

“We can’t predict that,” he said. 

For me, it started with FD&C Blue No. 1 Aluminum Lake. My mast cells didn’t care that my new medication was expensive, or that it was supposed to work. My mast cells only cared that there was a minuscule amount of blue dye in one pill and proceeded to sabotage my entire body. My vision faded, my heart raced, and I vomited like the girl in The Exorcist. One ER visit, three IV medications later, and two sick days later, I was still recovering.

My specialist urged me to try it without the blue dye.

“So, then it’ll work?” I asked.

“We can’t predict that,” he said. 

There’s a saying in skating: “If you aren’t falling, you aren’t learning.”

In November, seven months into MCAS remission, I decided to pursue my childhood dream of ice skating. I envisioned myself gliding effortlessly on the ice, wearing a sparkly dress. However, when I stepped out onto the ice in my new blades and boots, I realized, “Wow. This ice is hard and slippery.” 

I tried to avoid falling as long as possible, but inevitably my toe pick betrayed me, and I belly flopped onto the frozen pool. I moved just enough to indicate to others I was “okay,” whatever that means, and then laid motionless and contemplated my existence until the ice numbed my freshly bruised limbs and soul.

Not only are some of my skating falls pretty brutal, but if I want to get better, I have to get up and try again like it didn’t happen. If I hold on to my anxiety and anticipate a fall, I’m more likely to fail again, possibly worse. Same goes for mast cell disease. Mast cells are notoriously triggered by anxiety. If you are worrying about trying a new medication, your mast cells can become more reactive and therefore less likely to tolerate the new medication.

I often remind myself learning to figure skating has been much easier than learning to how to treat mast cell disease. It certainly has required less emergency medical care. Unlike skating with its tried-and-true techniques, every MCAS patient embarks on their own difficult journey to find their optimal treatment. There are many treatment options, but at this time, we have no way of predicting treatments or triggers of individual patients.

When I was diagnosed in 2015, my mast cell specialist said it usually takes 4-5 years of medication and supplement trials for an MCAS patient to discover their optimal treatment. 

I promptly ignored him. No patient actively getting their ass kicked by their mast cells wants to hear this. However, it was absolutely accurate for me. I reacted to more MCAS treatments than I tolerated. It took me 5 years of trialing medications and supplements to find my optimal daily combination to reach MCAS remission. There was no magic pill, just a lot of trial, error, and renewing of hope.

In skating, although falling still hurts, you usually do get better at it. Your brain learns to track your movement more quickly and your body learns to fall more safely, protecting delicate bones. Although the MCAS reactions don’t get easier, you learn how to identify triggers and stop reactions more quickly.

Here are some tips and encouragement for MCAS trial and error, learned through my own experience both as a patient and skater:

  •  Celebrate your courage and hard work regardless of the outcome.
  • Don’t quit, but do take breaks. Take time to recover physically and emotionally. 
  • A knowledgeable specialist may save you time and money in the long run. Most doctors are unfamiliar with MCAS treatment. MCAS specialists know how to methodically work through the treatment options and understand each patient is unique.
  •  Build relationships with other patients. They can help you avoid common pitfalls and cheer you on. Don’t forget to cheer them on too! 
  •  Keep calm and put on your crash pants when you’re trying something new. For me, this is taking time off work, having rescue medications ready to go, and planning check-ins with friends.
  •  Track your all medication and supplement ingredients, doses, and symptoms. Sometimes reactions can be subtle and build over time or with increased dose. Organized notes can help identify trends and triggers.
  • Compounding medications can help reduce inactive ingredients and risk of reacting. 

Last month, I participated my first figure skating competition. Despite preparing my best, I knew falling was a real possibility and I was absolutely terrified. I showed up, not because I knew I would perform well, but simply because I don’t want my life to be dictated by fear. I want to try to get better. 

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