Celebrating 5 years since my MCAS diagnosis

Keeya Quixote and Sancho

Five years ago, on December 22, I was diagnosed with mast cell activation syndrome. 

As I entered the university’s cancer clinic, greeted by Christmas decorations and a volunteer dressed as an elf, I braced for a possible death sentence. For better or worse, my pain and exhaustion numbed my fear. I had spent the entire year unsuccessfully pleading with doctors to help me as I lost my ability to eat, move, think, and sleep. All I knew for sure was my lab work was positive and something was wrong with my mast cells.

Of course, I had never heard of a mast cell and I had to wait for an appointment. One lab test noted, “Systemic mast cell disease is a heterogeneous disorder.” So I googled “systemic mast cell disease.” After reading Mayo Clinic’s page several times, I surmised I had two diagnostic possibilities: systemic mastocytosis or mast cell leukemia. The median survival rate of mast cell leukemia after diagnosis was 6 months. I joined Facebook groups for mastocytosis, where some people briefly mentioned “a newer condition called MCAS,” but nobody could tell me if I was going to die.

Spoiler alert: I’m not dead yet.

While I felt like the most tragic soul on the planet sitting in that cancer clinic waiting room and glaring at the cheerful elf, I know now my diagnosis was arguably a Christmas miracle. I had walked a mere 5 blocks across campus and paid a $35 copay with no awareness that I was seeing a world-leading specialist. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).

Thankfully, I also had no idea the ridiculous amounts of science and policy I would need to learn to stay alive. On the five-year anniversary of my MCAS diagnosis, I would like a damn degree.

To my fellow MCAS badasses, I want to say MCAS gets easier. To everyone else, I want you to know every day is a painful nightmare. It is really a combination of both. You collect tools and learn how to adapt.

How I describe the past five years:

  • Year 1: Total destruction and despair
  • Year 2: Renovating my life
  • Year 3: Building a support system
  • Year 4: Survival and self-advocacy
  • Year 5: Dreaming again

For me, 2015 was much harder than 2020. Although MCAS wasn’t a death sentence, it did feel like torture. Every day was painful and treacherous. It felt like no one was willing or able to help me. Isolating wasn’t enough. While I know how lucky I was for receiving a diagnosis, I am certain an earlier diagnosis could have prevented the worst year of my life. This is why I get so upset that affordable MCAS testing and evaluation is no longer available at the university, let alone in Minnesota. At least, there’s a lot more information and support online today.

Today, I celebrate my diagnosis and the healing it has provided through treatments and accommodations. Tomorrow, I continue fighting for access to MCAS testing and treatment. 

The doshas of Candyland

Board game

When my new mast cell specialist told me she first trained in Ayurveda, I had no idea what that meant, but I was pretty sure it was a threat to my committed relationship with macaroni and cheese. While I braced for shaming, she asked a million questions–everything from my childhood to diet to sleep to how I like to relax.

“You’re a kapha,” she said, handing me a piece of paper detailing the three Ayurvedic doshas: Kapha, Pitta, and Vata. She explained Ayurveda is the traditional medical system of India and doshas are frameworks for understanding people’s constitutions based on five elements: ether, air, fire, water, and earth. Most people have one predominant dosha, which can provide insight into living a fuller, healthier life. Kapha types are composed of the elements of water and earth, Pitta of fire and water, and Vata air and ether.

I quickly looked to the Kapha column and read: Heavy, slow cold, oily. My face scrunched into a silent WTF, as she continued talking. 

“Some patients have tons of questions, others get overwhelmed and forget easily, but Kapha types need to be pushed and motivated,” she said. “Kapha is slow to learn, but never forgets.”

As someone who takes great pride in my memory, I decided to give her the benefit of the doubt. I figured if she took the time to learn the nuances of mast cell disease, I could at least learn a little about Ayurveda.

The earth and water elements were certainly accurate. In college, I seriously considered majoring in geology, until my professor gave a lecture memorializing her friends who had fallen into volcanoes for science. I like rocks, but I don’t like fire. That day, I decided my major was political science, because I didn’t want to die in a volcano, as if there were no other geological career options. 

******

Me: Why am I so hungry?

Nicolle: End of summer… time to fatten up for winter

Me: Apparently, I’m the overweight dosha in Ayurveda. Kapha, the heavy, oily dosha that watches lots of TV. The TV part upsets me as much as the oily part. 

Nicolle: You’re not going to get fat from one meal!

Me: Kapha types are also good managers, so that’s probably why I have so much couch time

Nicolle: It is ok to watch TV and relax sometimes… probably good for you actually

Me: I’m also soft

Nicolle: Did you take your relaxi taxi?

Me: Yeah, but I don’t feel relaxed. Am I lazy?

Nicolle: Is this real? No, of course you are never lazy.

Me: Ancient India real

Nicolle sends me a link to a Kapha description which reads, “Earth and water are both by nature: dense, heavy, cold, static, and dull.”

Me: NOW I’M DULL?

Nicolle: None of that is you

Me: Maybe my social media dosha is different

Nicolle: I don’t have the mental capacity to learn about this right now

*****

Of course, as a Kapha, I couldn’t forget those descriptors, but it took me awhile to warm up to the concept. I started noticing Kapha aspects throughout my day: how sitting in the woods relaxes me and day naps destroy me. I began paying attention to my strengths and weaknesses, not just my symptoms. Heavy and oily qualities aside, I began to understand myself in a new way. 

I also began calling myself Gloppy. You know the characters from the board game, Candyland? Specifically the 1984 version?

Gloppy bio reads, “Just before you get to the Candy Castle, you’ll pass through the Molasses Swamp, where you just might meet Gloppy. Don’t be afraid, Gloppy might look like a monster, but he’s really a lovable glop of molasses goo. But Gloppy gets very lonely sitting in the swamp all by himself. So, give him a hug and you’ll have a friend forever.”

I’m pretty sure Candyland and ancient Indian medicine are mutually exclusive, but heavy and lovable Gloppy is definitely Kapha predominant. No offense to ancient Sanskrit, but saying “Gloppy” is way more fun. And now I say it A LOT. Especially around six o’clock.

*****

Me: It’s Gloppy time! Kapha is 6-10 AM and PM, Pitta is 10-2 AM and PM, and Vata is 2-6 AM and PM.

Nicolle: So, these are supposed to be your best times of the day?

Me: Yes, which is actually true

Nicolle: What do they suggest you do during the other times?

Me: Lay in the dirt

*****

My specialist loves to say, “Ayurveda is the original personalized genomic medicine.” This didn’t mean much to me at first, but now after several appointments, I understand Ayurveda values the individual patient. Ayurveda is not a one-size-fits-all medical system. It embraces the personalized approach that every MCAS patient dreams of, since every MCAS patient has different needs and triggers. Additionally, Ayurveda not only addresses the patient’s disease, but their whole life. I’m glad to have a doctor with additional training outside of academic medicine, which frankly has caused a lot of harm to mast cell disease patients. It is empowering to be seen as something more than a disease. 

Clearly, I have a lot more to learn about how Ayurveda can support my life, and I’m grateful to have someone to teach me. For more information on Ayuverdic medicine and doshas, check out The Ayurvedic Institute. Also, I highly recommend this Podcast for Healing Neurology episode.

*****

For this blog post, I had to review my messages with Nicolle to quote it accurately. I was reminded once again why I am so glad Nicolle is still alive. She tolerates me.

Here’s to hoping Ayurveda will help with my apparent neuroinflammation!

P.S. Have you signed up for my monthly emails? Every month, I send out email-only content about my latest advocacy work.

7 ways dog gyms are better than human gyms

Toy poodle Quixote at the dog agility gym

Life changing differences I’ve noticed since starting dog agility

  • Peanut butter and cheese are encouraged.
  • The equipment is pretty basic. You know how a tunnel works. There are no weights. 
  • All shapes, sizes, and abilities are welcome–from Chihuahua to Great Dane.
  • No one stares at you in a room full of dogs. 
  • Barking drowns out your heavy breathing. 
  • When you get tired, you can just say, “My dog needs water.”
  • Someone will probably check out your butt, but they are likely a dog. 

Related reading: How dog agility allows me to exercise with mast cell activation syndrome (MCAS), Ehlers Danlos Syndrome (EDS), and dysautonomia