Trial and error

Ice skater falling

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. 

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 treatments or triggers of individual patients.

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. 
  • 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.
  •  Build relationships with 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.
  •  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. 

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. 

Related posts and resources

Restless in remission

Keeya standing on a paddleboard making the peace sign

You know that feeling when you decide you’re ready to be discharged from the hospital? Like you’re thankful for all everyone has done, but you’re about to rip out your IV and get the hell out of there? As the nurses finalize the paperwork, you’re sitting on the very edge of the bed, next to your packed bag, prioritizing your to do list. 

It’s been two months since I went into remission from mast cell activation syndrome (MCAS) and I wake up every morning ready to burst out of my condo. When I started this blog, I worried that I would not be able to write posts regularly because of chronic illness. Ironically, writing during remission feels impossible. After spending five years in pain and isolation, I’m not interested in sitting still.

Of course, I never imagined MCAS remission was a possibility for me. I had heard about it, but knew it was rare. Remission doesn’t mean I don’t have MCAS anymore. It means I don’t have the symptoms of MCAS on my current treatment. Please read my tick saga if you haven’t already to learn about how I went into remission and my current treatment.

Since MCAS remission, I have also stopped my dysautonomia medication and my dysautonomia symptoms have disappeared. My resting heart rate has gone from 81 bpm to 69 bpm! I am more active than ever, yet I have not had a single EDS-related injury or subluxation. Before remission, I experienced subluxations about every three days from walking. Clearly, mast cells impact our nervous systems and connective tissues. I hope my remission will encourage more dysautonomia (e.g. POTS) and Ehlers-Danlos syndrome patients to pursue MCAS testing and evaluation.

Everything is brighter, happier, and more amazing. Not only can I do all the things and eat all the things, but I am raving like a kid, soaking in every experience. I am overwhelmed, overjoyed, and a little lost. For the last five years, every hour was dictated by mast cell disease. There were so many rules, many of them conflicting. I had whittled my life to a strict regime dictated by pain, not joy.

I have been so isolated for so long that I just want to scream, “WHAT ARE MY CHOICES?”

In actuality, when I went to the grocery store and faced all the choices, I grabbed avocados, pasta sauce, and ice cream, before running out to avoid a panic attack. I can eat anything I want without rescue medication or feeling like I’m going to birth a demon, but I’ve also learned drinking four margaritas or eating an entire bag of sour cream and onion chips doesn’t make me feel great either. 

My favorite food is cherry tomatoes. I still hide in the corner on my kitchen and binge entire packages like I’m about to get in trouble. Before remission, I would have barfed before getting the second tomato in my mouth, because of histamine. Yet, my stomach pain has disappeared, and I have tapered of Prilosec completely. (Just 8 months ago, I had an endoscopy that showed inflammation and the gastroenterologist said there was nothing more he could do for me.)

Keeya and a big sandwich
I became vegetarian shortly after this sandwich. HA. Part of my spontaneous Florida vacation.

Every day I seek a new adventure. I assumed my muscles would be atrophied from five years of disability, but it appears they mostly just lacked oxygen. I rarely get sore afterwards. I don’t have to worry about one minute of sun or heat making me swell and vomit for the next 24 hours. I have paddled, floated, and swum in lakes, rivers, pools, and the ocean. My daily step average went from 5k to 15k. My cross-training includes weekly running, pickleball, and paddleboard. My lungs have never felt this clear; I have struggled with asthma my entire life. My worst injury has been blisters.

How remission how impacted my ability to compete in agility outdoors

See more photos and videos of my adventures on Instagram.

Several people have asked if I worry about remission ending. I don’t. The end of remission would probably be soul-crushing. No one knows how or when anyone’s MCAS baseline will change or if treatments will stop working. I am still susceptible to trauma, infections, stress, and so many other immune system triggers. Everyone is. But I know I can handle it. 

Fear limits our joy. (And is terrible for our nervous systems.) I have been given an incredible opportunity to experience the world in a way most people cannot appreciate. My gratitude neutralizes any bubbling fears. I’m too busy yelling, “I can see fish!” from my paddleboard.

Take that dysautonomia! Standing alone used to be a nightmare due to dysautonomia.

Related posts

It’s really hard to summarize how extensively MCAS, dysautonomia, and Ehler-Danlos syndrome controlled my life before remission, but here are some old posts and an article to provide perspective.