Restless in remission

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.

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