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.

The ice age of MCAS testing

Most skaters daydream about going to Olympics, landing their hardest jump, or skating the perfect program.

I daydream about turning the ice rink into MCAS testing facility.

The idea began when I realized the ice arena was too cold for my Epi Pen and steroid injection for adrenal insufficiency. As various cases and containers failed to keep my meds warm, I flashed back to the MCAS Pee Cooler of 2015.

Mast cell activation syndrome (MCAS) testing is a rite of passage. Not only do you have to collect every droplet of urine for 24 hours, but you have keep it cold AT ALL TIMES. MCAS patients have higher levels of certain chemicals in their blood and urine, but these chemicals are extremely heat sensitive and degrade quickly. (On the positive side, thank goodness the chemicals do degrade or else we all might be dead from mast cell activation.)

Desperate for a diagnosis, I raced my pee from the toilet to the refrigerator knowing every second at room temperature risked a wasted test. At night, I worried I had added the new warm pee to the old cold pee too quickly and destroyed the specimen. The next day, my MCAS inflamed shoulder nearly dislocated hauling my pee in an ice-packed cooler to the clinic. Then I begged the nurse, who was not familiar with the test, to take care of my VIP.

No matter how diligent a patient is, all lab hope is lost if a nurse doesn’t put the blood or urine sample on ice immediately.

Which leads to my daydream:

An ice arena is the perfect place to collect blood and pee for MCAS testing.

Before you yell ew, just know we’re already peeing and bleeding on the ice anyway. Although I no longer suffer from interstitial cystitis thanks to MCAS treatment, my bladder is still vulnerable to blunt force. A figure skating coach assured me, “Everyone pees at some point. It’s inevitable.”

Don’t even get me started on hockey players.

Technically, the samples wouldn’t have to be taken on the rink, since the entire arena is cold, but in my daydream nurses assemble pop up ice houses for privacy, which honestly are more accessible than half of the bathrooms I’ve used in clinics.

My daydreams are fiscally responsible, so the test sessions would need to be group events, perhaps marketed as a MCAS lock-in party with entertainment, support groups, and prizes.

The details about food and keeping everyone from triggering each other are bit hazy, but one thing is for sure–at the end of the 24 hours, an ice cream truck would arrive.

The delivery person would hand out an assortment of allergy friendly ice cream, while the nurse loaded the samples into the temperature controlled truck to be driven to the laboratory.

It’s been 8 years since I’ve been diagnosed with MCAS and testing hasn’t gotten any easier. The only thing that’s changed is our awareness of how unreliable the tests can be.

Unfortunately, the solution is much more complicated that skating rinks and ice cream trucks. Even if the physician orders the tests, the patient follows the instructions, and the clinic ships the test perfectly, laboratories often do not handle the samples properly. Most lab staff are unfamiliar with MCAS. This is why seeing a MCAS specialist who has established a relationship with laboratory staff to ensure proper handling can be so valuable.

Even if we did have reliable test, we don’t fully understand mast cell mediators or how to measure them. To be fair, the first case studies on MCAS were published in 2007. Research takes time and money.

In the meantime, more doctors are learning how to clinically evaluate for MCAS and identify when treatment trials are warranted. My positive tests provided proof of my diagnosis and disabilities, but in the end, access to treatment was most important. Treatment changed my quality of life, not some lab results that researchers can’t agree on how to interpret. I dream of a day MCAS patients don’t have to put their pee in their refrigerators for concrete validation, but for now, I hope we can continue to make more people feel better.

Note: This post’s photo is absolutely photoshopped. I hope my days of carrying a pee jug in public ended years ago.

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.

Hell's Bells and Mast Cells