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.

New year, new me… mes

12/1/2021 Clinic note:

35-year-old female here for end of year evaluation.

Chief complaint is apathy towards bills and household chores.

Patient demands refill for doxycycline but is otherwise pleasant.

Exam is unremarkable. Patient performs unsolicited arabesques.

CBC and metabolic panel values have improved. Patient attributes this to her “nutrient dense diet,” which includes cheeseburgers, several pounds of tomatoes, and champagne.

Patient ask for letter of medical necessity for surf school in Costa Rica. Denied request. Offered preemptive orthopedic referral.

Okay, maybe I wrote that myself, but I DID send it to my doctor–actually, all of my doctors–on the back of my 2021 holiday card. I want them to know how profoundly life changing adequate MCAS treatment can be.
If only I could send them clips of my Finding My Range interviews as well. My first interview was recorded in November 2020, before my remission. My second interview was recorded in November 2021, as I was celebrating 7 months of remission. You can see and hear the incredible difference. I completely underestimated the impact of inflammation and pain on my personality. It is a great reminder to be gentle with ourselves and others when our bodies are hurting.
If you haven’t watched the latest episode yet, check it out to hear more about how I discovered I was in remission, how remission has eliminated my subluxations and dysautonomia, and how “remission” of symptoms is probably more common than we recognize.

After recording the latest episode, new research was published offering clues about why doxycycline may have eliminated my hEDS symptoms. Read the study. My case is encouraging this research team to think about a clinical trial for EDS. Of course, there are a lot of variables, but I am so hopeful my experiences and documentation will help lead to important discoveries to help so many people.

Of course, 2021 wasn’t perfect. My annual resolution is “more jokes, less pokes.” Although I only needed one IV for MCAS before remission, I was poked for adrenal crisis, skin cancer, and vaccination. Unexpectedly, remission made me so wiggly and excited I couldn’t sit long enough to perfect my one liners. With the help of winter, I am finally able to read and write again… in short intervals between adventures. 

My 2022 resolution is: New year, new memes. (Why the hell would I want a new me?) I have no idea what the content will be; I just know–with this glorious body–there will be no shortage of inspiration. I looking forward to laughing with you in 2022. 

Six years

Six years ago, I was diagnosed with mast cell activation syndrome (MCAS). Although no one is happy to have a disease, let alone one as complicated as MCAS, I celebrate my Dx day, because I know how incredibly lucky I was to get diagnosed. 
On December 22, 2015, I drove a mere 5 blocks (because I was so inflamed I couldn’t walk) across campus from my office and paid a $35 copay with no awareness that I was seeing a world leading MCAS specialist. At the time, I couldn’t even find a definition of MCAS on the internet, let alone treatment options.  I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis). 
Diagnosis provided so much validation, but it did not solve my problems. Calming my mast cells required an immense amount of work. Last year, I described the first five years:

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

This year, my dreams are coming true. Last week, I celebrated 6 years of diagnosis and 8 months of remission. Today, I am celebrating the launch of my first online course, Maximizing Your Medical Appointments, to help people with MCAS and other chronic illnesses.

Although on Instagram, my life looks like one nonstop gleeful adventure,  I have spent most of my free time in the past three months in front of a computer pouring my knowledge and energy into this course. I created the course that I wish I had in 2015. This information would have saved me time, energy, and money. 

MCAS is unpredictable. Continued remission isn’t guaranteed. I have no idea what next year will be like. But I refuse to waste a single drop of my glorious remission energy worrying about it. As long as I can, I will continue creating joy and hope for our community.