My body pranks me every day

It’s hard to make friends with mast cell disease. Sometimes, work is the only place I get social interaction all week, and even then, I spend most workdays alone in a HEPA filtered office with no windows.

Of course, my personality and service dog are magnetic, so I’ve managed to forge a few relationships on the way to the bathroom.  These colleagues have always taken a genuine interest in learning about my illness and disabilities. They make me feel welcomed and supported.

So naturally, I decided to prank them.

My colleagues were blindsided by my trickery, because I told them I was strictly off-limits on April Fool’s Day. My body does not handle pranks well. Any strong emotion, positive or negative, can trigger my mast cells and send me into an allergic tailspin. I declared this publicly last year on March 31, and then went home to craft my prank.

On April 1 at 2 p.m, when brains and tummies begin grumble, I skipped down the hallway, inviting them to my office for a treat.

“I made brownies!” is what they heard. “Gluten free!” I shouted to my co-worker, who can relate to my food sensitivities.

One by one, they followed me to my office, salivating like Pavlov’s dogs. Their eyes immediately located the brownie pan on my desk covered in aluminum foil.

“Help yourself,” I urged them. They eagerly peeled back the foil, revealing a piece of paper on the bottom of the pan lined with brown letter Es.

“Brown Es!” I cackled, as their bellies gurgled with disappointment. Turns out, my colleagues were really hungry that afternoon. For the rest of the day, every time I emerged from my office, I was greeted with a groan. But every groan felt like a gold star.

*****

Later that evening, I had trouble swallowing. My throat had been bugging me all day. It swells and itches frequently from mast cell reactions, so as long as it’s not life-threatening, I try to ignore it.  However, if it persists for more than a few hours, I begin to worry it’s a virus.

Eventually, I went to my bathroom mirror and aimed my iPhone flashlight into my mouth, expecting redness and inflammation. On the right side of my throat, there was a glaring white mass partially blocking my airway. I gasped while trying to keep my mouth open.

I have cancer! This whole time I’ve been blaming my mast cells and now I’m dying of cancer! Nobody is going to believe me. What are the chances! How the hell did this go unnoticed?

I began to mentally get my affairs in order. Who will take the poodles? Is it too late to plan their estate? Will I have time to burn my diaries? I turned off the flashlight on my phone and google “white mass throat cancer.”

For the first time in the history of the universe, Google assured me I did not have cancer.

Through hundreds of disturbing photos, Google taught me about another bodily horror: tonsil stones. As if kidney stones and gallstones aren’t enough. Google was less certain whether tonsil stones could be removed at home or not. However, the idea of setting up another appointment with doctor unfamiliar with mast cell disease persuaded me to give it a shot.

I thought the biggest challenge would be avoiding infection. No, the biggest challenge is most definitely not throwing up. I was certain I had eliminated my gag reflex after countless gallons of colonoscopy prep and oral contrast, but every time I tried to gently nudge the stone with the end of a sanitized toothbrush, I gagged. As my tonsil finally released the stone, my stomach released my dinner.

I wish I could say this was a classic case of karma, but my body pranks me almost every day. My mast cells’ favorites include stroke-like migraines, temporary deafness, and the occasional shart. In fact, I even blame my mast cells for the stone through inflammation. (My CSF leak was pretty close to my right tonsil.)

Today, I’m happy to be isolated at home, a safe distance from my co-workers. The Internet says April Fools’ Day is canceled out of respect for the COVID-19 pandemic. I couldn’t agree more. I just hope my mast cells got the memo.

COVID-19 and MCAS: My experience

Why do I strain my eyes to watch the thermometer sticking out of my mouth every time I take my temperature­, as if I can control the numbers with my mind?

The thermometer beeps adamantly at 99.6F. I yell, “No, no, no!”

My poodle, Quixote, looks at me, “I didn’t do it.”

I haven’t had a fever this high in four years. Usually I run cold, less than 98F, and I’m already on daily aspirin, a fever reducer. I’ve been self-isolating for two days, after begging my manager to let me work from home. Before that, I limited myself to work and the grocery store. There are only a few confirmed COVID-19 cases in my state, so I wonder if I have the flu. In 2016, the flu almost killed me, so this no consolation.

Soon after, I poop my guts out and decide to clean the toilet. I squirt the toilet cleaner into the bowl, standing as far away as possible, ready to run when the bleach hits my sensitive MCAS nose. Except this time, it doesn’t hit me. I lean in and sniff the toilet. Nothing.

I run to my closet, grab a bottle of bleach, insert my nose into the opening, and inhale. (Do not try this at home.) NOTHING. My throat should be swelling shut by now. My unrestricted breathing triggers my worst fear.

“I am dying!” I text my closest friends.

I message my symptoms to my primary care doctor. She says in order to meet the criteria for COVID-19 I must have shortness of breath or a cough. If these symptoms develop, she recommends I go to the ER.

I’ve played the wait-and-suffocate game enough times to have a panic attack when she tells me this. I know the criteria are arbitrary. As my service dog, Sancho, runs to my side, I flashback to my fight for my MCAS diagnosis. I knew something was very wrong; my body told me so every day. For a whole year, I begged for someone to take my body’s warning signs seriously. Countless doctors dismissed my fears, and I still live with the consequences.

On day two, the fevers and pooping continue. Benadryl does nothing. I know I have a virus, but I also know urgent care will dismiss me if I ask for a COVID-19 test. So, I ask for a flu test. I explain that both COVID-19 or the flu could kill me. The urgent care doctor orders bloodwork instead. The results are normal per usual.

“Your white blood count is normal, so I highly doubt you have the flu. The flu would have hit you harder,” he says.

I don’t disagree. I ask, “Would my white blood count be high if I have COVID-19?”

“No,” he says. “Often it decreases. But your white blood count is normal.”

“But I’m on prednisone,” I argue.  “So, my white blood count should be higher.”

“You’re on prednisone?” he asks, as he quickly clicks into my chart, which lists prednisone as a medication. “Huh.”

Nevertheless, my labs are normal, so he shoos me out the door. More cars carrying suspected COVID-19 patients pull into the parking lot.

For the next week, I try to manage my symptoms, while preparing for my demise. I check my oxygen levels every half hour with my pulse oximeter. I write an instruction manual for Quixote: We’ve been co-sleeping for 10 years, so good luck keeping your bed poodle-free. At times, the chills, headache, and sore throat are overwhelming; other times, I feel completely healthy. This virus likes to play mean tricks.

On day 8, my breathing worsens, despite nebulizing cromolyn religiously. My oxygen level drops to 95% and I begin negotiating with the coronavirus, imagining it is Ursula from the Little Mermaid.

“I just want to live,” I plead.

“We haven’t discussed the subject of payment,” the coronavirus growls.

“My voice isn’t all that spectacular, but how about my sense of smell? You already took it anyway. Where do I sign?” I ask.

Articles citing diarrhea and loss of smell as symptoms of COVID-19 start circulating the internet. I read several patients’ symptom journals; they resemble mine. I learn deadly pneumonia often develops days 9-12. I worry these might be my last few days. I watch several hours of shitty reality TV anyway.

My heart rate drops to 65 beats per minute for no apparent reason. I have hyperPOTS and have not seen my heart rate this low since the flu almost killed me in 2016. This continues for two days, and then my heart rate mysteriously returns to normal.

On day 11, my chest felt lighter until I eat lunch. Thirty minutes after eating pasta, I experience a severe, but familiar, asthma attack.

“Welcome back,” I wheezed to my mast cells.

Today is day 12. I’m pretty certain I’m going to live, because I started caring about changing my sweatshirt before my daily Zoom meetings with my coworkers. As expected, my mast cells are still fighting the virus that likely died a few days ago. I will probably need to keep dousing them with drugs for several weeks, but right now their exuberance doesn’t frustrate me. After all, they kept me alive.

 


 

Notes and acknowledgments

  • I was on 2mg prednisone the entire time. Other than the prednisone, I am not immunocompromised.
  • I continued my daily medications, including 325mg aspirin and 20mg montelukast sodium.
  • This would have been a lot scarier without nebulized cromolyn, an albuterol inhaler, and a pulse oximeter. I likely would have need to go to the hospital without these tools. I never developed a cough.
  • The flu in 2016 was a hundred times worse for me (my liver shut down), but I also didn’t have these tools.
  • Special thanks to my friends who left food on my patio, and Nicolle, who listened to my every symptom and fear… like EVERY symptom and fear because I still want to believe texting them makes them go away.

But you don’t look dead

In the 80s, HarperCollins decided to encourage children to read by scaring the hell out of them. The scary stories were cleverly disguised with “I Can Read Level 2” emblems. To be fair, I was the type of kid that got nightmares from Nancy Drew. However, I never suspected such simple words could wreck me for so many years.

I wouldn’t be surprised if millennials’ trust issues stem from one story in particular: The Green Ribbon.

Listen to the story with pictures from the actual book.

Basically, a woman named Jenny wears a green ribbon around her neck her whole life and won’t tell her husband why. When she is very old, she removes the ribbon and her head falls off.

No explanation.

Children need explanations to sleep at night.

Until that moment, I hadn’t worried about anyone’s head falling off. Would someone do that to me? Could I trust anyone? I became nauseous every time my mom put on a turtleneck.

Today, I no longer worry about anyone’s head falling off.

I’m too worried about my own head falling off.

You see, I finally understand Jenny, thanks to Ehlers Danlos Syndrome. I am able to look past the fact that she is dead and relate to her cranial instability. After all, I’m half-dead most days anyway.

I have great empathy for Jenny. Even if she did tell people about her cranial instability, no one would have believed her anyway. Doctors probably would have blame it on anxiety.

In fact, I wish I could commiserate with Jenny about the pressure to be alive. We would probably be great friends. She would have understood the complications of my cerebrospinal fluid leak and fear of sneezing. We would have rested our heads, while binging our favorite TV shows. I wouldn’t care that she was dead, as long as she laughed at my jokes.

Jenny would teach me the importance of having boundaries, that it’s not always necessary to disclose my medical conditions. I would tell her Alfred is an ableist asshole, and kinesiology tape is a thing now.

Jenny would never tell me, “But you don’t look sick.”

And I would never tell Jenny, “But you don’t look dead.”

Why are hospital discharge instructions so unhelpful?

Last month, I temporarily lost my vision from a cheeseburger. My iron was low, so I scheduled a cheeseburger like a healthy person schedules a haircut. Not just any cheeseburger, but a $12 grass-fed patty without any seasoning or toppings except cheddar cheese–the same burger I’ve been eating for years.

Less than an hour later, I lost half of my vision in a staff meeting. At first, it was fun to watch my coworkers disappear, but then the doom kicked in. By the time I got to the emergency room, half of my body was numb.

A few seconds later, I felt like I was making a cameo on Grey’s Anatomy. No less than six residents swarmed me. The supervising doctor said they were going to prep me for tPA, and I nodded even though I wasn’t sure what that meant. I knew I was in trouble when the nurse grabbed my service dog.

One resident warned me, “Okay now, big poke!”

I thought, “I think you mean little poke.”

Then two of them in chorus sang, “Big poke!”

I contemplated how quickly six residents would tackle me if I tried to run. In the end, it was a big poke and I have not eaten a cheeseburger since then. Although the doctors quickly ruled out a stroke, it’s terrifying when my mast cell reactions affect my brain. I worry about having a ministroke, if I don’t treat the inflammation quickly enough. I would much rather have hives and vomiting. I didn’t get any gastrointestinal symptoms, but the next day I had two black eyes. The restaurant staff could not have been more helpful trying to identify the culprit, but I may never know what triggered my reaction.

After steroids, Benadryl, and a few hours of observation, a nurse handed me my discharge papers and wished me luck. On the way home, I curiously thumbed through the packet. It’s always interesting what doctors list as the reason for my visits, since mast cell reactions are not an option.

On the sixth page was a 3-inch clipart image of a glass of wine. Below, it read, “Red wine is a common migraine trigger.”

Folks, I haven’t ingested alcohol, let alone a grape in the past four years. Red wine is a common migraine trigger because has enough histamine to give me lips bigger than Angelina Jolie’s.

I don’t know what was more appalling: the useless advice or the wasted paper. Don’t even get me started on clipart. At least, I am accustomed to the useless advice.

“Okay, the discharge instructions say come back if you develop a fever or hives,” the nurse often says.

“I have hives right now. I have hives every day of my life. I am not putting that gown back on,” I reply.

After my gallbladder surgery, I received advice on how to clean my wounds and keep my poop soft (and no clipart). What I really needed was some encouragement and a 24-hour prednisone hotline for when I wanted to punch people in the face.

I guess that’s what Facebook is for.

Messages I received instead of GoFundMe donations

I’ve spent my summer suffocating on laundry fumes. My neighbor values the noxious fragrance of his laundry over my human life, so I was forced to launch a GoFundMe to afford a lawyer and a contractor. Friends and strangers alike have been incredibly generous in their donations, advice, and encouragement. Asking for help was terrifying–it always is–but once again, I was reminded that people care and want to help.

Of course, there were a few inconsiderate exceptions that poked my funny bone.

“Have you tried celery juice?”

Does celery juice pay the bills? If you find a vegetable that can heal my bank account, please let me know.

“There but for the grace of God I go”

Apparently, this means you feel lucky you’re not in my position. Or that God has no mercy on me? Or you don’t have mercy on my brain fog? There but for the grace of GoFundMe I go.

“Do not use western medicine!”

So next time I have an allergic reaction, I should just ignore my EpiPen? Because the last alternative medicine supplement I tried gave me anaphylaxis. I suppose you don’t like to use western money either.