Category: Exercise

My adrenals didn’t RSVP to my MCAS remission party

Keeya and others in a Zumba class on the pier

When my MCAS symptoms went into remission in April 2021, everyone wanted to know how long it’d last. After years of trialing medications, suddenly fragrances no longer bothered me, I could eat anything I wanted, my joints stopped subluxating, and I could stand without fear of passing out. What if remission was temporary and I turned back into a pumpkin without warning? There was no research or fairy godmother to guide me. 

In June 2021, I wrote, “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.”

So, I set out on a 10 day road trip from Seattle to Los Angeles. Within 24 hours of landing in Seattle, I walked 22,937 steps through three different parks. Exhilarated by my body’s stamina, I wanted more, so I joined a group of strangers for a Zumba class on the pier in the 90F sunshine. I had zero interest in Zumba, and didn’t even know what it was, but because my mast cells would have despised it, I was determined to give it a try. I flailed and sweated, trying to keep up with high energy dancers. Drunk on exercise endorphins, I felt invincible.

Back in the hotel, my body revolted. As first, I assumed it was dehydration or heatstroke, so I chugged some water. Then I vomited and the bathroom began to spin. Within minutes, I went from “I absolutely deserve this” to “is this the end?!” 

I looked in the mirror. My face and neck were not red at all. My throat felt fine despite the light fragrance in the room. Maybe I caught COVID? I vomited again. A wave of doom reminded me this had happened before. Shortly after my MCAS diagnosis, I thought I could handle travel, but I ended up fighting for my life in a Florida hospital and wishing I’d never left home. Was this also a big mistake? 

I tried not to worry about the implications. I just needed to regain control of my body. I dug into my medication bag and retrieved my bottle of prednisone… which I had just stopped taking.

I started using prednisone in February 2015, months before my MCAS diagnosis. Like many MCAS patients, my MCAS symptoms had been ever-present since childhood, but since the diagnosis didn’t exist back then, I accepted my symptoms as background noise in my daily life. 

Mast cells don’t like to be ignored. 

At age 28, my mast cells ramped up to a new level of aggression, inflaming my muscles, joints, and tendons. Although the MRIs came back normal and I received a disability parking permit, I cried limping into work each morning. My hip sockets felt as if they contained shards of glass and my quadriceps felt like overstretched rubber ripping with every step. As a last ditch effort, my rheumatologist prescribed prednisone, and my pain subsided. My rheumatologist quickly warned me prednisone was not a long-term solution because of its risks like adrenal insufficiency. I begged for refills, so I didn’t lose my job, health insurance, and mental health while fighting for a diagnosis. 

Then on May 29, my throat swelled for the first time. We weren’t sure why, but my doctors threw prednisone at it without any hesitation. Throat swelling scares rheumatologists.

For the next six years, I took low dose prednisone daily in order to eat, move, sleep, breathe, and work in combination with other MCAS medications and disability accommodations. Prednisone was also part of my premedication and rescue medication protocols, helping me to survive severe reactions, surgeries, and procedures. (But not that one brand I’m allergic to!) For me, the risks of MCAS (e.g. GI bleeds, hydronephrosis, anaphylaxis) outweighed the risks of prednisone (e.g. diabetes, osteoporosis, adrenal insufficiency).

Within an hour of taking prednisone at the Seattle hotel, I started to feel better. I had stopped taking prednisone, because I no longer needed it for MCAS. Although I resumed my low dose for the remainder of the trip, it took me weeks to realized I had almost Zumba-ed my way into adrenal crisis. Both exercise and heat burn cortisol quickly. If you don’t have adequate cortisol in your body, you die. I would have never knowingly spent all my cortisol on Zumba, FFS. 

I thought I had tapered slowly enough to avoid adrenal insufficiency, but my assumptions were way off. (Spoiler: After 6 years of use, it took an additional 3 years to taper off. And I’m considered lucky.) I realized although I was in remission, my body was still healing from years of damage from MCAS. 

In 2022, I was diagnosed with secondary adrenal insufficiency by an endocrinologist after realizing I couldn’t navigate tapering alone. No test was necessary for diagnosis considering I was still dependent on steroids and had used them for many years. Prednisone and other glucocorticoids suppress the pituitary gland from creating ACTH which simulates the adrenal glands to make cortisol. (So, cortisol and ACTH blood tests aren’t usually helpful if you’re on glucocorticoids. I wish I had gotten baseline tests before starting prednisone.) If your adrenal glands are suppressed for too long, they can permanently stop making cortisol. 

Primary adrenal insufficiency is when there is damage to the adrenal glands affecting the production of cortisol and aldosterone. I did blood tests to rule out primary adrenal insufficiency. 

In our 2022 MCAS Q & A, Dr. Afrin and I discussed adrenal insufficiency.

This blog post is one of a three part series on my experience with secondary adrenal insufficiency. In June 2024, I successfully tapered off prednisone and my adrenal glands began making a normal amount of cortisol again. However, I still must monitor for symptoms of low cortisol.

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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.

Keeya holding Quixote next to a kayak on a river
Keeya playing pickleball
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.

We’re going to be on ESPN2!

Five years ago, I became allergic to exercise. When I ran, or even walked, my throat swelled, my organs screamed from lack of oxygen, and my heart pounded so loud I thought it might explode. I worried I would never be able to compete in agility.

Today, my heart still might explode, but only metaphorically. We did it! Quixote and I not only survived, but enjoyed the AKC National Agility Championship! I may be disabled, and he may be old, but we are athletes!

And we’re going to be on ESPN2 tonight! Quixote and I will be profiled during the airing of the AKC National Agility Championship, starting at 8 PM ET/ 7 PM CT/ 5PM PT. Our segment will run in the 2nd hour, after the 20″ dogs.

In the meantime, if you haven’t already, check out my AKC NAC video series. I will be releasing one more video after the ESPN2 profile. Thank you so much for your incredible support! I certainly couldn’t have done this on my own.