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.

Mac and cheese and other drugs: why ingredients matter

Macaroni and cheese is my one true love. It always has been.

When I was seven and it was socially acceptable for me to eat neon noodles every day for lunch, I’d stick my head in laundry chute and yell, “DAAAAAAAAD!”

“What?” he’d shout from the basement. (We use cell phones these days.)

“I’m so hungrryyyyy. I’m starrrrrrving. Feed me. Feed me. Feed me,” I’d chant, while stomping on the floor until I heard him coming up the stairs.

In the kitchen, I’d hand my dad the box of pasta and assume my supervisory chair at the table. I imagined the best thing about being an adult was knowing how to make macaroni and cheese. I had tried on my own, of course, but noodles, water, and the magic powder were surprisingly disappointing. I watched my dad carefully, trying to learn, but the counter was too high. I begged him to teach me.

“What comes next?” I asked, while he poured the cooked noodles back into the steaming pot.

“It’s top secret,” he said.

“Tell me!” I cried.

“Secret ingredients. That’s why it tastes better than mom’s,” he said. (Years later, I would learn mom skimped on the butter, but I would never understand why.)

“C’mon!” I demanded.

“All of your favorite things,” he said.

“Like what?” I asked.

“Peanut butter, “ he said.

“You’re lying,” I accused him. It didn’t taste like peanut butter.

“Well, what do you think makes it taste so good?” he replied.

I didn’t have an answer. I stood on my chair, trying to see for myself.

“Now the ice cream,” he said.

“Stop lying!” I cried. “Tell me how to make it!”

He went to the refrigerator, retrieved a half of gallon of vanilla ice cream, and set it on the counter next to the noodles. Turning his back to me, I saw him scoop the ice cream. I contemplated everything I knew about food. I had never tried this. Maybe he was right. My mouth watered imagining the peanut butter and ice cream mixing together.

“How much ice cream?” I asked hesitantly.

“Two cups,” he said.

I believed him.

*****

Fours years later, I finally was old enough to babysit. I was certified by the Red Cross, and eager to earn money. Unfortunately, my parents still hadn’t taught me the most important skill of babysitting: how to make macaroni and cheese.

“Do you know how to make macaroni and cheese?” my first client asked.

“I think so,” I said. “You mix the box with peanut butter.”

And yet they still let me watch their child.

*****

Making macaroni and cheese whenever I want is one of the best things about being an adult. However, my macaroni and cheese is no longer neon orange. Although it still comes in a box, it’s gluten-free, and I mix it with lactose-free milk.

I am no longer blissfully unaware of the ingredients in my food and medicine. As digestion became increasingly painful in my 20s, I began vigilantly reading labels in grocery stores. However, I never thought to read the all ingredients in my medications.

One of the first lessons my mast cell specialist taught me was many patients react to the inactive ingredients in medications. These ingredients (also called excipients) can include fillers, dyes, binders, and preservatives – not the actual medicine itself. I used to think brand name and generic drugs were the same, yet I had awful experiences when my pharmacy changed my prescription. While the active ingredients are the same, the inactive ingredients can vary greatly. Now I only use dye free medications, and have memorized a list of manufacturers my body tolerates.

The same applies to supplements. I learned this the hard way two years ago when I tried quercetin, a mast cell stabilizer. The brand I chose used the least ingredients: just quercetin and cellulose, a common binder made from plants. I even checked it out on their website: “hypoallergenic plant cellulose.” Sounds great, right?

Three days of flu-like lethargy and one seizure-like reaction later, I discovered the plant they used was Southern Pine. Pine is one of my most severe allergies. Why the hell would you put a Christmas tree in medicine?

Know what’s in your pills. It’s not sunshine and happiness. Or peanut butter and ice cream.

Happy first birthday, kidney stone

Yes, that’s right. I am celebrating the one year anniversary of passing my first kidney stone. Why would I want to celebrate such an excruciating memory?

Because it taught me I’m a badass.

Maybe a naïve badass. Initially, I tried to meditate through the pain, but couldn’t shake the fear that maybe one of my organs was about to explode. So I went to the ER and was diagnosed with a 5mm stone and a few smaller ones. Begrudgingly, I began pain medication around the clock. I started to feel pretty good. So naturally, I flew to Nashville for a work conference.

And then that f’er decided to move. Good thing “kidney stone” is free ride to the hospital from strangers. (“Oh, bless your soul, my daddy used to get those. A grown man, and he’d be on the floor crying.”)

To say I was a badass does not also mean I was a peach throughout the experience. I quickly surpassed the ugly cry. Every time the pain medication wore off, I became a werewolf, growling and clawing in my hospital bed, restrained only by the IV that became my lifeline. I was admitted for surgery, but sure enough I passed that f’er as the sun rose.

And I didn’t even get a gold star. Or card. As if nothing happened, I had to submit a summary of the work conference that I half missed.

Our society struggles to recognize the sour milestones of our lives. I celebrated my MCAS diagnosis with donuts. And it made everyone uncomfortable. One guy even tried to put a donut back once he realized the occasion. Although bittersweet, my diagnosis was a more memorable and life-changing milestone than any of my birthdays.

The internet says passing a kidney stone can be more painful than child birth. I abandoned the 1-10 pain scale long ago, but find the kidney stone pain comparison very useful nowadays. Instant credibility.

So today I’m celebrating that little stone that now resides in a laboratory in Tennessee. And the absence of any siblings since. Sometimes pain is inevitable and there is nothing to do but endure it. With MCAS, pain is a daily visitor. I suggest you celebrate when you escape it.