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

One year of MCAS remission

Mast cell celebrating

This week marks one year of me telling strangers, “I’m not supposed to be here.”

As they try to guess where this unsolicited conversation is going, I clarify, “Oh I don’t mean I should be dead. But I should still be in solitary confinement.”

I beam with the satisfaction of knowing I’ve already won the day, as they consider if I’m a public safety threat. 

Mast cell activation syndrome {MCAS) has never been easy to explain, so describing the freedom and joy of remission is basically impossible.

I try to relate in simple terms, “I couldn’t do stairs for 5 years. I could only eat 15 foods without any spices, not even pepper. I had to spend Christmas and birthdays alone.”

MCAS remission has affected every aspect of my life. My gratitude is endless. For example, I can buy food without reading the ingredients labels, I can meet new people and remember their names, and I can wear new clothes without worrying about losing my skin.

It’s okay if people don’t understand the details, but I desperately want the world to understand three things:

  • MCAS treatment can be life changing  
  • MCAS is likely prevalent
  • Most people don’t have access to MCAS testing and treatment

I want people to get access to help sooner than I was able to, so they can avoid unnecessary suffering and damage to their bodies. 

Thank you for your kind messages in response to my video on social media. I’m glad to hear my work is making a positive impact and inspiring hope. It encourages me to continue to share my story and create resources. 

Talk to all the strangers

Zumba class at Pier 62

You don’t just return to normal.

This spring, as people got vaccinated and re-emerged from their homes, the news media began reporting on “re-entry anxiety.”

I rolled my eyes, not because I don’t empathize, rather because I do. Face masks, social isolation, and now re-entry anxiety–I’m a damn trendsetter.

Of course, you’re going to struggle to re-integrate with people that could have killed you, intentionally or not. For the past five years, I isolated myself, because socialization was too dangerous. At worst, people’s fragrance sent me to the emergency room and destroyed my organs. At best, hanging out with even one fragrance-free friend caused me pain and fatigue for 24 hours. I couldn’t grocery shop or spend holidays with my family without jeopardizing my health for FIVE YEARS.

So, when I went into remission in April, I ate all the food, tried all the sports, and soaked in all the sun, but people still made me nervous. 

Psychologists recommend taking small steps to ease back into the world, like exposure therapy.

Of course, I did not listen to the medical professionals. I did not take small steps. I flew across the country.

When I landed in Seattle, my friend called me an Uber, because I didn’t know how. Overcome with joy and anxiety, I shouted to the driver, “This is my first Uber and I’m in remission!” After five years of life-threatening reactions, I’m terrible at small talk, so for the next 20 minutes we discussed the meaning of life.

A friend planned on joining me for Zumba on the pier, but I gave her the wrong time. I put on my neon pink skirt and walked over anyway. Apparently, the skirt was a giveaway, because a woman tapped me on the shoulder, and asked if I was going to Zumba. She introduced herself and we both admitted we were nervous about dancing in public surrounded by cameras. We instituted the buddy system, but the salsa music quickly evaporated our fears.

Keeya and others in a Zumba class on the pier
Photo credit: My new Zumba friend, Julie.

And then I made a lot more Zumba friends. 

Photo credit: We Move To Give, a nonprofit organization founded by licensed Zumba instructors and Sea Mar Community Health Centers volunteers to break the socio-economic barriers to fitness. (SO COOL!)

Apparently, dancing publicly with strangers was invigorating because I cranked out 27K steps (11.5 miles) before bed. 

Keeya holding Sancho overlooking Mount Tahoma
If you look closely, you can see me shooting a rainbow out of my hand. That’s how excited I was.

The next day, I crawled into a van with 8 strangers to spend 12 hours on a mountain. Our guide had a magical skill set–an environmentalist, hospitality host, and a group facilitator. Everyone was incredibly kind, as I hiked the trails sporadically exclaiming, “I’m so happy to be alive!”

After oversharing my remission with another Uber driver, she suggested I celebrate by getting pregnant on my vacation.

“You’re such a good dog mom,” she said.

“What about the father?” I asked.

“You don’t need him,” she said. 

Apparently, this is where I draw the line on new experiences. 

Instead, I drove with friend-of-a-friend I had only met twice to California. A few weeks before, I had heard about her travel plans, so I DM’ed her, “Let me know if you want a road trip buddy.” She’s a total saint for saying yes and we had a great time.

Of course, I saw old friends too. Like my best friend from 4th grade, another friend from 6th grade, and my high school ex-boyfriend‘s sister. (I hope someday you too go into remission so you can have dinner with your high school ex-boyfriend’s sister.)

By the time I made it to Southern California, I was so comfortable in my own body and grateful for the people around me, I didn’t care what people thought. As I l floated on my surfboard waiting to catch a wave, admiring the majestic ocean, I told my instructor, “I wouldn’t mind dying out here.”

“Right on,” he said. 

After my surf lesson, I had lunch with the best kind of stranger of all–another mast cell disease patient, Lisa Cairncross. Stranger, of course, is a bit of a stretch. Like most MCAS patients, we had never met in person, but Lisa has been a kind and generous friend for many years through social media. We shared stories and laughed at jokes that only those with mast cell disease can appreciate. I am hoping to visit her again this winter.

Of course, the trip wasn’t perfect.

  1. I thought that because remission eliminated my vertigo, I would no longer be afraid of heights. So, my friend and I rode Seattle’s ferris wheel. After five years of not crying for lots of barbaric procedures, I almost burst into tears a quarter of the way up. I seriously considered opening the door and jumping into the ocean. Instead, I did what I am trained to do when my body starts reacting inappropriately. I dug into my purse and dry swallowed two Benadryl out of sheer panic. Spoiler alert: Benadryl does not cure ferris wheel phobias either.
  2. We stopped for the night in Southern Oregon, which is closer to Mexico than Minnesota. So, I thought the Mexican food would be better. I ordered the vegetarian nachos. I had to ask my friend to help me identify the vegetables, because it was basically chips, cheese, and guacamole with onions, sliced and diced; squash; zucchini; carrots; and broccoli. No beans. If this is what being vegetarian means, I quit.
  3. I picked the full body wetsuit for my surf lesson, because I was worried I’d be cold (I forget I don’t have dysautonomia anymore). The instructor warned me the full-body wetsuit was a nightmare and he was totally right. My knuckles bled as I tried to drag it up my legs. My friend grabbed both sides and I tried to bounce in. When it finally scraped its way up to my waist, I cheered, but my friend gasped, “Oh my god. Your butt.” My butt blew out the wetsuit cheek to cheek, which I thought was hilarious, since I was wearing a swimming suit. Then my friend informed me my butt was no longer wearing the swimsuit. 

My vacation was amazing because of the people.

For so many years, I would say, “It takes me awhile to warm up to new people.” I considered myself an introvert, but really, I was a raging extrovert stuck in survival mode. When your body is screaming, connection is not a priority. 

When I went into remission, people got excited. I received more attention than when I needed help the most. I was congratulated and praised by people who let me down or hurt me.

The strangest thing happened: I let them be excited. I even made plans with some of them. I guess when the pain left, it took the anger away with it. I stopped holding space for the past and began meeting people where they were. 

So far, the best gift of remission is discovering people aren’t so terrible. (If anything is terrible, it’s chronic pain and illness.) Introvert or extrovert, we all need people–even if it’s just to wriggle us into a wetsuit and tell us our butt crack is showing.

For more video and photos from my road trip, check out my Instagram!