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Did your doctor lack empathy or knowledge?

Or were clinic policies limiting their care? 

Did insurance restrict your doctor’s time or treatment?

We can’t improve our medical appointments until we understand why we aren’t getting the care we need. 

Dr. Linda Bluestein and I understand the pressures of being a complex disease patient and the challenges of the U.S. healthcare system. 

In our course, Maximizing Your Medical Appointments, we will teach you how to identify and address roadblocks to your medical care and advocate for your individual body’s needs.

Our goal is to improve your health care experiences, while saving you time, energy, and money.

Enroll by 10/15 to access this course before it ends!

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–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!