GUEST POST: The downsides of MCAS remission

Don’t get me wrong. MCAS reactions can be terrifying. I don’t wish them on anybody. I hate when anyone suffers.

For years, I took care of my mom as she struggled with life-threatening MCAS reactions. I could literally hear her heartbeat speed up as her body flooded with mast cell chemicals. I told her to lay down and promised I wouldn’t leave her side. I even followed her to the bathroom when her intestines swelled and cramped, forcing her to throw up.

Sometimes, the inflammation caused her so much pain she cried. I wiped away her tears and tried to distract her. In the moment, she was often too confused to appreciate my interventions, but she always thanked me later.

When we went out in public, I sneezed violently at anyone wearing perfume. I wish I could have pulled them aside and explained they are polluting the air we breathe. To be fair, I too have been guilty of rolling my body in a signature scent, but masking your skin with synthetic chemicals is unnatural at best. My mom always says that’s what a bath is for.

—

Then one day, my mom’s scary reactions stopped.

I didn’t question why. All that mattered to me was that she felt better. For the first time in years, she invited people over for cake to celebrate. I literally jumped for joy as the room vibrated with her laughter.

Our time together changed dramatically. Before MCAS remission, I had to encourage her to take small walks around the neighborhood. Now, she invited me on walks every day–sometimes twice a day! I was excited at first, but then she started to outpace me. A couple times, she made us walk so far, that I lay in the grass with exhaustion.

Of course, many people think the hardest part was when she told me she didn’t need me anymore.

Yes, she literally said that. Out loud. Then closed the door in my face.

And yes, I cried. It was a surprise retirement nobody prepared me for.

But over time, I learned to enjoy my new routine. I had more time to sleep and hang out with my brother. I even dabbled in interior decorating and DIY crafts, while my mom engaged in what can only be described as the human version of zoomies.

However, there is one part of her remission I will never embrace.

Before remission, her overactive mast cells inflamed and irritated her intestines so severely that she couldn’t properly digest FODMAPs or salicylates. Meanwhile, spices set off reactions before they ever got to her stomach. Chicken, beef, and flash frozen fish were fine, but no garlic, onion, or even pepper.

She didn’t have much energy or physical strength to cook either, so she’d regularly buy a fresh rotisserie chicken, portion it out, and freeze it with plain white rice. Same meal, seven days a week, without fail. She would get sick of it, but I never did. I happily ate all her leftovers when she was too disgusted.

When my mom went into remission, she swore she’d never buy a rotisserie chicken again.

Instead, she hauled bags upon bags of groceries filled with colorful produce and fragrant herbs into the kitchen, followed by clanking pots, sizzling oil, and a cacophony of spices that tingled my nose. I salivated with the anticipation of sharing new meals full of flavor.

She didn’t even let me taste them.

“You can’t have this; it’ll make you sick,” she said. “I’m sorry, but you’re a dog.”

But I live in the present! I cried. I don’t worry about things like stomach aches and diarrhea. Bring on the trial and error!

She ignored me.

For years, I did everything to keep her safe and happy, and now that she is finally in remission, I am the one with the restrictions.

– Sancho, retired service dog and very good boy

White and red colored toy poodle sitting with mouth open like he is smiling

Thank you patrons for supporting this blog post!

Want to learn more about my experiences and help others by supporting this blog? Become a patron on Patreon.

A wrinkle in my remission

Last summer, I got my fillers removed.

Not the gel type, of course. I would never threaten my mast cells like that.

After nine years of prednisone, I successfully tapered off and watch my face deflate. Corticosteroids don’t just cause appearance changes with dreadful names like “moon face” and “buffalo hump;” the redistribution of fat, particularly around joints, can be painful. Although my skin lost its prednisone glow, I was thrilled I could slip my arms into clothes and bend my knees without discomfort.

One of the very few perks of mast cell activation syndrome (MCAS) can be looking younger. Overactive mast cells can plump tissue, boost circulation, and remodel connective tissue, all while training humans to evade sunshine like a vampire. I wrecked my flawless skin no more than two weeks into MCAS remission when I flew to Florida before remembering beach vacations require sunscreen.

For five years, my skin care routine included Benadryl cream and cromolyn squirted into lotion to combat allergic shiners and facial flushing. Now I am using Tretinoin, which literally increases the number of mast cells in the skin, to fight wrinkles and boost collagen. Yes, my mast cells are so stable that I have a prescription to recruit more.

Soon after stopping prednisone, I developed a prominent wrinkle anyway. Rather than feel disappointed, I was perplexed. The wrinkle is on the bridge of nose, a horizontal line between my eyes. Who gets their first wrinkle on their nose?

When my mom informed me it’s called a “bunny line” I dismissed it as some kind of maternal euphemism. So, I Googled it and learned not only is that the terminology, but it can be caused by smelling something repulsive.

DID MCAS GIVE ME A WRINKLE? All this time I’d been holding onto the fact at least my mutated mast cells made me younger, when really, they were engraving my face.

Every time I entered a bathroom with an air freshener.

Every time a coworker entered a meeting wearing perfume (despite being told not to).

Every time laundry fumes wafted over the sidewalk.

Every time I scoured a new room like a blood hound hunting VOCs.

Every scented trash bag and Amazon package.

Every freshly sanitized room.

Maybe wrinkles should merely indicate where the smiles have been, but in my case, they indicate every MCAS ambush I fought to survive. I certainly have earned this wrinkle and I will wear it with pride–mostly because Botox seems like a terrible way to protect my remission.

Or maybe, I’m just overly expressive. And cute as a bunny?

Thank you patrons for supporting this blog post!

Talk to all the strangers

You don’t just return to normal.

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.

Keeya and others in a Zumba class on the pier — 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.

Keeya holding Sancho overlooking Mount Tahoma — 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.

For more video and photos from my road trip, check out my Instagram!