Category: Hope

GUEST POST: The downsides of MCAS remission

Purple cartoon mast cells

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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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!

Trial and error

When I first was diagnosed with mast cell disease and learned my mast cells were overactive, I decided, “Okay, I’ll just be really nice to them. I’ll give them everything they want and they’ll settle down.”

Turns out, nobody, including the world’s leading mast cell activation syndrome specialist, knew what MY mast cells wanted.

Instead of receiving a set list of treatments, my doctor introduced the trial-and-error process, a methodical approach to medications and supplements, slowly and one at a time. Spoiler: Antihistamines were not enough. Mast cells releases hundreds of different chemicals that can cause damage to our bodies in excessive amount.

Struggling to eat, move, and sleep, I wanted to say, “Excuse me, sir. But I believe I am dying. I don’t have time to waste. I have bills to pay and dogs to feed. Please fix my mast cells now.”

Luckily, I heeded his guidance. At first, I improved with each incremental change: my joints ached less, my intestines were happier, and I had more energy. Each time he added a new prescription, my specialist warned me MCAS patients often react to inactive ingredients (e.g. fillers, dyes, binders, and preservatives) in medications, and to be mindful of any new symptoms.

“Which ingredients?” I asked.

“We can’t predict that,” he said. 

For me, it started with FD&C Blue No. 1 Aluminum Lake. My mast cells didn’t care that my new medication was expensive, or that it was supposed to work. My mast cells only cared that there was a minuscule amount of blue dye in one pill and proceeded to sabotage my entire body. My vision faded, my heart raced, and I vomited like the girl in The Exorcist. One ER visit, three IV medications later, and two sick days later, I was still recovering.

My specialist urged me to try it without the blue dye.

“So, then it’ll work?” I asked.

“We can’t predict that,” he said. 

There’s a saying in skating: “If you aren’t falling, you aren’t learning.”

In November, seven months into MCAS remission, I decided to pursue my childhood dream of ice skating. I envisioned myself gliding effortlessly on the ice, wearing a sparkly dress. However, when I stepped out onto the ice in my new blades and boots, I realized, “Wow. This ice is hard and slippery.” 

I tried to avoid falling as long as possible, but inevitably my toe pick betrayed me, and I belly flopped onto the frozen pool. I moved just enough to indicate to others I was “okay,” whatever that means, and then laid motionless and contemplated my existence until the ice numbed my freshly bruised limbs and soul.

Not only are some of my skating falls pretty brutal, but if I want to get better, I have to get up and try again like it didn’t happen. If I hold on to my anxiety and anticipate a fall, I’m more likely to fail again, possibly worse. Same goes for mast cell disease. Mast cells are notoriously triggered by anxiety. If you are worrying about trying a new medication, your mast cells can become more reactive and therefore less likely to tolerate the new medication.

I often remind myself learning to figure skating has been much easier than learning to how to treat mast cell disease. It certainly has required less emergency medical care. Unlike skating with its tried-and-true techniques, every MCAS patient embarks on their own difficult journey to find their optimal treatment. There are many treatment options, but at this time, we have no way of predicting how individual patients will respond to treatments.

When I was diagnosed in 2015, my mast cell specialist said it usually takes 4-5 years of medication and supplement trials for an MCAS patient to discover their optimal treatment. 

I promptly ignored him. No patient actively getting their ass kicked by their mast cells wants to hear this. However, it was absolutely accurate for me. I reacted to more MCAS treatments than I tolerated. It took me 5 years of trialing medications and supplements to find my optimal daily combination to reach MCAS remission. There was no magic pill, just a lot of trial, error, and renewing of hope.

In skating, although falling still hurts, you usually do get better at it. Your brain learns to track your movement more quickly and your body learns to fall more safely, protecting delicate bones. Although the MCAS reactions don’t get easier, you learn how to identify triggers and stop reactions more quickly.

Here are some tips and encouragement for MCAS trial and error, learned through my own experience both as a patient and skater:

  • Celebrate your courage and hard work regardless of the outcome.
  • Don’t quit, but do take breaks. Take time to recover physically and emotionally. 
  • Control the variables: sticking to one change at a time helps determine what works and what doesn’t.
  • Avoid new foods, activities, and environments in the when trialing a new treatment. Sticking to a low-stress routine can help your mast cells tolerate the change.
  • A knowledgeable specialist may save you time and money in the long run. Most doctors are unfamiliar with MCAS treatment. MCAS specialists know how to methodically work through the treatment options and understand each patient is unique.
  • Don’t ghost your primary care doctor; they can also prescribe some MCAS treatments. In my experience, they are more willing to do so when you are a regular patient. I explain how my primary care doctor helped me in this video with Dr. Afrin.
  • Track your all medication and supplement ingredients, doses, and symptoms. Sometimes reactions can be subtle and build over time or with increased dose. Organized notes can help identify trends and triggers.
  • Compounding medications can help reduce inactive ingredients and risk of reacting. 
  • Become friends other patients. They can help you avoid common pitfalls and cheer you on. Don’t forget to cheer them on too! 
  • Keep calm and put on your crash pants when you’re trying something new. For me, this is taking time off work, having rescue medications ready to go, and planning check-ins with friends.

Last month, I participated my first figure skating competition. Despite preparing my best, I knew falling was a real possibility and I was absolutely terrified. I showed up, not because I knew I would perform well, but simply because I don’t want my life to be dictated by fear. I want to try to get better. 

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