GUEST POST: The downsides of MCAS remission

Don’t get me wrong. MCAS reactions can be terrifying. I don’t wish them on anybody. I hate when anyone suffers.

For years, I took care of my mom as she struggled with life-threatening MCAS reactions. I could literally hear her heartbeat speed up as her body flooded with mast cell chemicals. I told her to lay down and promised I wouldn’t leave her side. I even followed her to the bathroom when her intestines swelled and cramped, forcing her to throw up.

Sometimes, the inflammation caused her so much pain she cried. I wiped away her tears and tried to distract her. In the moment, she was often too confused to appreciate my interventions, but she always thanked me later.

When we went out in public, I sneezed violently at anyone wearing perfume. I wish I could have pulled them aside and explained they are polluting the air we breathe. To be fair, I too have been guilty of rolling my body in a signature scent, but masking your skin with synthetic chemicals is unnatural at best. My mom always says that’s what a bath is for.

—

Then one day, my mom’s scary reactions stopped.

I didn’t question why. All that mattered to me was that she felt better. For the first time in years, she invited people over for cake to celebrate. I literally jumped for joy as the room vibrated with her laughter.

Our time together changed dramatically. Before MCAS remission, I had to encourage her to take small walks around the neighborhood. Now, she invited me on walks every day–sometimes twice a day! I was excited at first, but then she started to outpace me. A couple times, she made us walk so far, that I lay in the grass with exhaustion.

Of course, many people think the hardest part was when she told me she didn’t need me anymore.

Yes, she literally said that. Out loud. Then closed the door in my face.

And yes, I cried. It was a surprise retirement nobody prepared me for.

But over time, I learned to enjoy my new routine. I had more time to sleep and hang out with my brother. I even dabbled in interior decorating and DIY crafts, while my mom engaged in what can only be described as the human version of zoomies.

However, there is one part of her remission I will never embrace.

Before remission, her overactive mast cells inflamed and irritated her intestines so severely that she couldn’t properly digest FODMAPs or salicylates. Meanwhile, spices set off reactions before they ever got to her stomach. Chicken, beef, and flash frozen fish were fine, but no garlic, onion, or even pepper.

She didn’t have much energy or physical strength to cook either, so she’d regularly buy a fresh rotisserie chicken, portion it out, and freeze it with plain white rice. Same meal, seven days a week, without fail. She would get sick of it, but I never did. I happily ate all her leftovers when she was too disgusted.

When my mom went into remission, she swore she’d never buy a rotisserie chicken again.

Instead, she hauled bags upon bags of groceries filled with colorful produce and fragrant herbs into the kitchen, followed by clanking pots, sizzling oil, and a cacophony of spices that tingled my nose. I salivated with the anticipation of sharing new meals full of flavor.

She didn’t even let me taste them.

“You can’t have this; it’ll make you sick,” she said. “I’m sorry, but you’re a dog.”

But I live in the present! I cried. I don’t worry about things like stomach aches and diarrhea. Bring on the trial and error!

She ignored me.

For years, I did everything to keep her safe and happy, and now that she is finally in remission, I am the one with the restrictions.

– Sancho, retired service dog and very good boy

White and red colored toy poodle sitting with mouth open like he is smiling

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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.

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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.