Six years ago, I was diagnosed with mast cell activation syndrome (MCAS). Although no one is happy to have a disease, let alone one as complicated as MCAS, I celebrate my Dx day, because I know how incredibly lucky I was to get diagnosed.
On December 22, 2015, I drove a mere 5 blocks (because I was so inflamed I couldn’t walk) across campus from my office and paid a $35 copay with no awareness that I was seeing a world leading MCAS specialist. At the time, I couldn’t even find a definition of MCAS on the internet, let alone treatment options. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).
Diagnosis provided so much validation, but it did not solve my problems. Calming my mast cells required an immense amount of work. Last year, I described the first five years:
2016: Total destruction and despair
2017: Renovating my life
2018: Building a support system
2019: Survival and self-advocacy
2020: Dreaming again
This year, my dreams are coming true. Last week, I celebrated 6 years of diagnosis and 8 months of remission. Today, I am celebrating the launch of my first online course, Maximizing Your Medical Appointments, to help people with MCAS and other chronic illnesses.
Although on Instagram, my life looks like one nonstop gleeful adventure, I have spent most of my free time in the past three months in front of a computer pouring my knowledge and energy into this course. I created the course that I wish I had in 2015. This information would have saved me time, energy, and money.
MCAS is unpredictable. Continued remission isn’t guaranteed. I have no idea what next year will be like. But I refuse to waste a single drop of my glorious remission energy worrying about it. As long as I can, I will continue creating joy and hope for our community.
When my body became a daily horror, I gave up on celebrating Halloween. Costumes, makeup, and candy–all triggered mast cell reactions. As I struggled with the wicked end of mold and ragweed season, I told myself I was too old to enjoy the festivities. Life was all tricks, and no treats.
Well, I most certainly am not too old, because this year, now in remission, I wore three costumes and celebrated harder than a sugar intoxicated 8-year-old. It all started with a Halloween playlist, and then it quickly escalated to dancing and social media.
I had a few enablers like Dr. Linda Bluestein, who responded with enthusiasm when I hesitantly suggested we learn the Thriller dance.
I had so much fun learning Thriller and dancing with Dr. Bluestein that I picked up some cozy skeleton pajamas and learned the Monster Mash.
At this point, it only made sense that I would enter my local AKC agility trial’s costume contest as Little Bo Peep with my sheep.
Little Bo Peep inevitably lost one of her sheep, but the other sheep triple qualified and titled.
As I ran around the agility ring yelling I LOST MY SHEEP, I realized not only was I having a blast, but I was making people all around me smile and laugh. Halloween isn’t childish or unnecessary. The true meaning of Halloween is creating joy and laughter, sprinkled with terror. Isn’t that basically the mission statement of this blog is anyway?!
On Saturday night, I attended my first party in six years. I danced to salsa, West Coast swing, East Coast swing, reggaeton, pop, and Middle Eastern dance music until 1 AM, while taking breaks for water, champagne, Thai food, and cheesecake. When Thriller came on, I pelvic thrusted my way to the center of the room, past the doctors and professional dancers (apparently this is a common mix?) who I had just met, and someone gasped, “Oh she’s really doing it, huh?!”
Oh yeah, I really did it. And I can’t wait to do it again.
This spring, as people got vaccinated and re-emerged from their homes, the news media began reporting on “re-entry anxiety.”
I rolled my eyes, not because I don’t empathize, rather because I do. Face masks, social isolation, and now re-entry anxiety–I’m a damn trendsetter.
Of course, you’re going to struggle to re-integrate with people that could have killed you, intentionally or not. For the past five years, I isolated myself, because socialization was too dangerous. At worst, people’s fragrance sent me to the emergency room and destroyed my organs. At best, hanging out with even one fragrance-free friend caused me pain and fatigue for 24 hours. I couldn’t grocery shop or spend holidays with my family without jeopardizing my health for FIVE YEARS.
So, when I went into remission in April, I ate all the food, tried all the sports, and soaked in all the sun, but people still made me nervous.
Psychologists recommend taking small steps to ease back into the world, like exposure therapy.
Of course, I did not listen to the medical professionals. I did not take small steps. I flew across the country.
When I landed in Seattle, my friend called me an Uber, because I didn’t know how. Overcome with joy and anxiety, I shouted to the driver, “This is my first Uber and I’m in remission!” After five years of life-threatening reactions, I’m terrible at small talk, so for the next 20 minutes we discussed the meaning of life.
A friend planned on joining me for Zumba on the pier, but I gave her the wrong time. I put on my neon pink skirt and walked over anyway. Apparently, the skirt was a giveaway, because a woman tapped me on the shoulder, and asked if I was going to Zumba. She introduced herself and we both admitted we were nervous about dancing in public surrounded by cameras. We instituted the buddy system, but the salsa music quickly evaporated our fears.
Photo credit: My new Zumba friend, Julie.
And then I made a lot more Zumba friends.
Photo credit: We Move To Give, a nonprofit organization founded by licensed Zumba instructors and Sea Mar Community Health Centers volunteers to break the socio-economic barriers to fitness. (SO COOL!)
Apparently, dancing publicly with strangers was invigorating because I cranked out 27K steps (11.5 miles) before bed.
If you look closely, you can see me shooting a rainbow out of my hand. That’s how excited I was.
The next day, I crawled into a van with 8 strangers to spend 12 hours on a mountain. Our guide had a magical skill set–an environmentalist, hospitality host, and a group facilitator. Everyone was incredibly kind, as I hiked the trails sporadically exclaiming, “I’m so happy to be alive!”
After oversharing my remission with another Uber driver, she suggested I celebrate by getting pregnant on my vacation.
“You’re such a good dog mom,” she said.
“What about the father?” I asked.
“You don’t need him,” she said.
Apparently, this is where I draw the line on new experiences.
Instead, I drove with friend-of-a-friend I had only met twice to California. A few weeks before, I had heard about her travel plans, so I DM’ed her, “Let me know if you want a road trip buddy.” She’s a total saint for saying yes and we had a great time.
Of course, I saw old friends too. Like my best friend from 4th grade, another friend from 6th grade, and my high school ex-boyfriend‘s sister. (I hope someday you too go into remission so you can have dinner with your high school ex-boyfriend’s sister.)
By the time I made it to Southern California, I was so comfortable in my own body and grateful for the people around me, I didn’t care what people thought. As I l floated on my surfboard waiting to catch a wave, admiring the majestic ocean, I told my instructor, “I wouldn’t mind dying out here.”
“Right on,” he said.
After my surf lesson, I had lunch with the best kind of stranger of all–another mast cell disease patient, Lisa Cairncross. Stranger, of course, is a bit of a stretch. Like most MCAS patients, we had never met in person, but Lisa has been a kind and generous friend for many years through social media. We shared stories and laughed at jokes that only those with mast cell disease can appreciate. I am hoping to visit her again this winter.
Of course, the trip wasn’t perfect.
I thought that because remission eliminated my vertigo, I would no longer be afraid of heights. So, my friend and I rode Seattle’s ferris wheel. After five years of not crying for lots of barbaric procedures, I almost burst into tears a quarter of the way up. I seriously considered opening the door and jumping into the ocean. Instead, I did what I am trained to do when my body starts reacting inappropriately. I dug into my purse and dry swallowed two Benadryl out of sheer panic. Spoiler alert: Benadryl does not cure ferris wheel phobias either.
We stopped for the night in Southern Oregon, which is closer to Mexico than Minnesota. So, I thought the Mexican food would be better. I ordered the vegetarian nachos. I had to ask my friend to help me identify the vegetables, because it was basically chips, cheese, and guacamole with onions, sliced and diced; squash; zucchini; carrots; and broccoli. No beans. If this is what being vegetarian means, I quit.
I picked the full body wetsuit for my surf lesson, because I was worried I’d be cold (I forget I don’t have dysautonomia anymore). The instructor warned me the full-body wetsuit was a nightmare and he was totally right. My knuckles bled as I tried to drag it up my legs. My friend grabbed both sides and I tried to bounce in. When it finally scraped its way up to my waist, I cheered, but my friend gasped, “Oh my god. Your butt.” My butt blew out the wetsuit cheek to cheek, which I thought was hilarious, since I was wearing a swimming suit. Then my friend informed me my butt was no longer wearing the swimsuit.
My vacation was amazing because of the people.
For so many years, I would say, “It takes me awhile to warm up to new people.” I considered myself an introvert, but really, I was a raging extrovert stuck in survival mode. When your body is screaming, connection is not a priority.
When I went into remission, people got excited. I received more attention than when I needed help the most. I was congratulated and praised by people who let me down or hurt me.
The strangest thing happened: I let them be excited. I even made plans with some of them. I guess when the pain left, it took the anger away with it. I stopped holding space for the past and began meeting people where they were.
So far, the best gift of remission is discovering people aren’t so terrible. (If anything is terrible, it’s chronic pain and illness.) Introvert or extrovert, we all need people–even if it’s just to wriggle us into a wetsuit and tell us our butt crack is showing.
