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.

Finding Your Range podcast interview with Jeannie Di Bon

Please enjoy my interview with Jeannie Di Bon about living with mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), and dysautonomia. In this episode, I explain how I’ve been suffering from these conditions literally since birth, even though I didn’t get diagnosed until age 29. I also share my tips for living with chronic illness, joy of dog agility, and hopes for MCAS, EDS, and dysautonomia patients.

In a world that generally doesn’t understand the challenges and limitations of hypermobility, I have appreciated Jeannie Di Bon’s exercise videos for years. Jeannie herself lives with MCAS and EDS. I believe we need more practitioners and therapists, like Jeannie, who truly understand these diseases and advocate for patients. Learn more about Jeannie Di Bon.

Beware of mast sails

I am terrified of sailboats. When I first heard the term “mast cell,” I immediately thought of a sailboat mast and shuddered.

Lake life is arguably the best part of Minnesota summers. Like many Minnesotans, I started swimming lessons as an infant and fishing as soon as I could hold onto a rod. I love motorboats, canoes, and kayaks.

But sailboats give me panic attacks.

Growing up, my family rented a cabin on a lake every summer. The water toys were always a determining factor in our selection process. When I was 10 years old, my mom picked a resort that offered Sunfish sailboat rentals and lessons–a seemingly idyllic family bonding experience.

On the morning of our lesson, the Sunfish looked deceiving cute bobbing near the dock, waving their bright, striped sails. My dad and younger brother selected a red boat, while my mom and I picked a yellow boat. As our instructor began rattling off sailing terms and warnings from his own boat, I was relieved to be paired with my mom, the more cautious parent.

We aimed our bows towards the middle of the lake and the wind whipped the boats to life. Our sails thrashed side to side, threatening to decapitate us. I slid aboard into the safety of the footwell, where I intended to remain the entire lesson. As my mom fought the sail into submission, the thick metal boom swung unpredictably above my head. When had inner tubes lost their novelty?

Somehow, all three boats made it to the center of the lake. My eyes were mostly closed. The instructor announced, “Now we are going to capsize our boats.”

I had not yet learned the swear words necessary to adequately express my shock.

The instructor attempted to explain how getting over the fear of tipping and learning how to right the boat is the first step in sailing. He showed us how to stand on the deck, grab the mast, and pull it over the side using the weight of your body. So basically, fall into the water with a boat on your head.

I looked at our row of cabins, small like my brother’s Legos, lining the shore.

“I’m out of here,” I yelled, stood up, and jumped ship.

Luckily, I was wearing a life vest, because my fear of the sailboat somehow outweighed my fear of drowning. I doggy paddled for 40 minutes back to beach, only looking back once. To my horror, I saw my mom dangling from the top of mast like a monkey. Apparently, she didn’t have enough weight to capsize or right the boat alone. Back at the cabin, she blamed me for this, but it only further validated my fear.

*****

When I was diagnosed with mast cell disease, suddenly everything seemed dangerous. My body no longer could discern real threats from healthy pleasures like sunshine, exercise, and joy. Faint fragrances on friends and family became one-way tickets to the emergency room. My own home wasn’t safe enough to coax my body out of fight or flight.

Even the path to healing was dangerous. I never knew if a new food or medication would cut off my vision or inflame my joints so badly that I couldn’t walk. Every mast cell disease patient is different, so there was no guide for cautious treatment. Many doctors refused to treat me because the unpredictability of the disease scared them. However, I knew if I didn’t overcome my fears, I never would get better.

*****

A few days after my “flight” from the sailboat, my dad approached me, “Can I take you out for a very calm ride on the sailboat? We won’t tip and we can stop any time. I promise.”

My thoughts on the sailboat hadn’t changed, but I knew my dad sincerely wanted me to have a good experience. Plus, he actually passed the first sailing lesson, unlike my mom. I reclaimed my place at the bottom of the footwell, while my dad sat confidently behind me with a rope in one hand and the tiller in the other. I gritted my teeth as light wind gently propelled us to the middle of the lake.

“Okay, we’re going to turn. Watch your head,” my dad informed me. I couldn’t physically get my head any lower than it already was, but I appreciated the narration. My dad smiled at me, “See this isn’t so bad.”

It wasn’t bad. If I hadn’t been bracing for death, it may have actually been tranquil. We glided back and forth across the lake for a tolerable amount of time before returning to the dock. My dad steadied the hull and the sail, as I jumped into the water with glee. My mom was proudly waiting for me on the shore. I stood up in waist deep water to shout how brave I’d been.

That’s when my dad lost control of the metal boom, and it blasted me in the back of the head, knocking me out in the water. Luckily, I was wearing a life vest.

My parents no longer ask me to go sailing.

*****

Mast cell disease has taught me healing is not linear and it takes an incredible amount of bravery. Healing is hard, slow, and can even feel counterintuitive. However, you’re allowed to go at your own pace. You’re allowed to declare you’re fucking done with sailboats, or whatever hurt you. Just look for the next tiny step and no matter what happens, know that you are braver than you think.