Tips for navigating MCAS remission

Just like there were no guidebooks for mast cell activation syndrome (MCAS) when I was diagnosed in 2015, I’ve had to navigate remission on my own. I began blogging to an extremely small audience, so part of me hopes someday this post will serve a bigger audience too. But mostly, I hope MCAS diagnosis and treatment improves so that no one has such a drastic journey from illness to remission anymore.

(Most cases of MCAS are not as severe as mine was.)

Today, I am celebrating three years of MCAS remission, and it still feels surreal. I still have imposter syndrome about the most mundane activities like riding in an Uber or going to a gym. I tolerate fragrances, although I still try to avoid them. I can eat whatever I want, but the majority of my food is organic. I am a competitive figure skater.

Remission has been challenging to document because I want to live, not write about living. Here are few tips I’ve complied from my chaotic notes over the past three years:

1. Do not go to a grocery store without a plan

You know how they say don’t go to the grocery store hungry? Well, definitely don’t go to the grocery store if you’ve been hungry for 5 years. For context, only 15 foods (no spices!) were safe for me to eat before remission.

The freedom of not needing to read labels is exhilarating! My joy, however, was quickly overshadowed but the realization I didn’t remember how to cook. I couldn’t even decide what I wanted to cook. At one point, I actually left the grocery store with no food because I was completely overwhelmed by the choices. Switching to online shopping and order pick up helped me plan actual meals instead of smorgasbords of histamine, salicylates, and FODMAPs.

2. Do not share your remission story at a bar; you cannot handle free alcohol

On related note, do not try to use your nausea repression skills on tequila. That’s how I learned I can shoot calamari out my nose.

3. Your MCAS fears will no longer serve you

I still have to give myself pep talks to overcome my MCAS fears, which most people can’t relate to. My illness was traumatic, so it’s no surprise my remission has been a psychological rollercoaster. Here are the fears I’m especially proud of overcoming:

Traveling alone with no service dog
Orange juice
Strength training
Hugs
Crowds
Leftovers

Again, there was no guidebook for my remission, so I just clung to my mantra: choose joy over fear. I have no regrets. (I still haven’t overcome my MCAS fear of jeans or bikini waxes, neither really spark joy either.)

4. Pursue your childhood dreams; no one will know your age anyway

In remission, you’ll seek adventure like a 20 year old, exude the joy of 7 year old, but have the wisdom of a 70 year old–and thanks to hEDS, no one will know how old you are. Although remission may enable you to do “normal” things, your MCAS experiences will probably set you apart from your peers, so you might as well as chase joy not the status quo.

Remission is the ultimate permission to do whatever the fuck you want.

Nobody, including myself, expected me to pursue my childhood dream of figure skating. Instead of worrying about my health history or other people’s expectations, I tried it and fell in love. I have skated 2-4 times almost every week since I started in November 2021, because it fills me with immense joy.

5. Beware of cults

The isolation I faced before remission is the hardest aspect for people to understand. I couldn’t even invite my mom over for my birthdays without risking a severe MCAS reaction to her clothes and hair. I craved community the most. When remission hit, I wanted to be EVERYONE’S friend.

I quickly learned: Many people will be attracted to your remission joy but repelled by your boundaries to protect it.

As an extrovert, I was so desperate for connection that I couldn’t recognize superficial relationships. I got sucked into a borderline cult before I could say “shake it ‘til you make it.” Although I accepted the glorified hospital socks, I couldn’t reconcile my boundaries with their marketing goals.

Remission is precious. It will take time to find an in-person community that values your presence, truly celebrates your journey, and respects that you will not take your health for granted.

6. The hard work of healing doesn’t end at remission

Remission doesn’t heal all MCAS damage overnight. It doesn’t even exempt you from doctor appointments. (I was so mad when I realized I had to return to the clinic for refills.)

Although my inflammation is down and my gut juices have returned to their appropriate spaces, some of the damage in my body caused by MCAS is permanent (e.g. gallbladder, kidney, GI tract, dura). Other parts (e.g. my muscles and adrenal glands) are still recovering.

Remission is the ultimate permission to do whatever the fuck you want, but if you want to do whatever the fuck you want for a long time, I recommend dedicating some time to healing. Every day of remission, I have taken steps to heal my adrenals and strengthen my body.

Even in remission, Dr. Afrin’s advice rings true: patient, persistent, and methodological trial and error pays off. Not only I have gained muscle while regaining my adrenal function, but I have also begun tapering my MCAS medications.

Interested in re-reading my remission journey? Read the posts.

Enjoy reading my remission posts and want this blog to continue? Become a Patreon.

P.S. April is Adrenal Insufficiency Awareness Month and Premenstrual Dysphoric Disorder Awareness Month! Both conditions can be caused by MCAS.

Mast cells on ice

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

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.

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 9^th 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!