Remember me after COVID-19

Dear able-bodied friends, family, and co-workers,

We need to have this talk while your emotions are still raw – while you’re restless and missing your old life; while you’re anxious about your finances; while you’re worried you might die.

This pandemic has been challenging for me, but not in the ways that it is challenging for you. In many ways, I am actually thriving. For the first time in four years, my job is now accessible. My co-workers don’t forget to include me in staff meetings and I don’t have to worry about life-threatening allergic reactions. Without a commute, I finally have enough energy to make dinner every day. My body no longer screams at night.

Many stores that were previously inaccessible to me are now offering curbside pickup and free shipping. Grocers are offering special hours and facilitating social distancing, so I can shop safely. Even my doctor is offering telemedicine. The masks I wear in public are cool now.

The outreach and support I’m receiving is phenomenal. Every day, multiple friends and acquaintances offer their help. They ask me how I am doing and what I’ve been up to. Community members set up a Facebook group to help neighbors like me with errands. Organizations are offering free food, online courses, and mental health resources.

So why I am boiling with resentment?

Because your entire life has changed for the worse and you want to talk about it. You want to vent about the challenges of self-isolation and the fear of illness. You’re struggling to adapt to the uncertainty.

All of your feelings are valid.

But so were mine.

Five years ago, my life was similarly turned upside down by illness. I became confined to about 10 buildings due to severe reactions to fragrances and other chemicals. In other words, no shopping malls, air travel, or dinners with friends.

When I got a disability parking permit, one friend suggested I take advantage of all the places with tough parking. What I really wanted was for her to visit or at least call, but she never did. If she had, she would have realized I could barely walk. I lost many friends because they thought my lifestyle was a choice.

While medical debt threatened my financial stability, I almost lost my job too. My office was not safe, but my manager (at the time) told me working from home wasn’t feasible. After months of stressful HR meetings and medical documentation, I convinced my manager to allow me to work from home one day per week, even though I needed more. It has not caused any performance issues in the past four years.

I will never forget my first birthday in isolation, the year I didn’t receive a single card and no one visited. When I needed support the most, people forgot me. People argued that if I wanted to be included I would need to lower my accommodation expectations. Sometimes it’s just easier to spend Christmas alone.

This pandemic not only validated my grief, but confirmed that I’ve been unnecessarily suffering, because people were unwilling to adapt. 

I finally feel like I belong in society, and I fear that will be taken away. I feel an urgency to share my story and build empathy. My body depends on it.

How can we use these terrible experiences to build a kinder world together?

I know you are capable.

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.

Please stop calling MCAS rare

Maybe it’s the pain and prednisone, but I’ve been really peeved by the eagerness to raise awareness for mast cell activation syndrome (MCAS) on Rare Disease Day.

First of all, why wasn’t the MCAS community half as engaged on Mast Cell Disease Awareness Day?

Second, there is growing evidence that MCAS is not rare. Some researchers believe more than 5% of people have MCAS! Yes, some organizations currently categorize MCAS as rare, but only because that is the default categorization for newly-recognized diseases. For example, AIDS used to be categorized as a rare disease. Furthermore, there is growing evidence that conditions like fibromyalgia, which affects 3-6% of people, are symptoms of MCAS.

Calling MCAS rare is not only unfounded, but it hurts diagnosed and undiagnosed MCAS patients. It signals to doctors that they do not need to learn about the disease. It signals to drug companies that there is not enough of a demand for new, lower cost treatments, like ketotifen in the U.S. It delays the development of accessible diagnostics. It signals to policy makers, who often vote based on numbers, that they do not need to listen to us.

Worst of all, calling MCAS rare discourages undiagnosed patients from getting tested and learning about MCAS, because they believe it is improbable.

That being said, please support Rare Disease Day. At this time, MCAS patients experience many of the same struggles associated with rare disease. Furthermore, mastocytosis continues to be classified as a rare disease through evidence-based research and we definitely should support fellow mast cell disease patients. After all, mastocytosis provides the foundation for understanding MCAS. Finally, you don’t have to have a rare disease to support Rare Disease Day.

MCAS is rarely diagnosed and rarely researched, but please stop calling MCAS rare. Instead, start planning for Mast Cell Disease Awareness Day on October 20. I know I am.

Learn more about Rare Disease Day at http://www.rarediseaseday.org.

Why viruses are scarier with mast cell disease

While the new year promised a fresh start, my mast cells were still reacting to what happened in 2019.

Around Thanksgiving, I caught a virus. I dragged my feverish body to urgent care and asked for a flu test. I needed to know if I should pack my hospital bag, which should not be confused with my emergency room bag. My ER bag is always ready and with me.

“Good news, it’s not the flu,” the doctor said.

“How long do you think this virus will last?” I asked.

“Generally, about 5-7 days and then you should be fine,” he said.

“I’m not worried about the virus,” I said. “I’m worried about my mast cells’ reaction to the virus.”

He sputtered a bit and tried to use “degranulate” in a sentence.

“I have prednisone at home,” I said, as I grabbed my coat.

Most people are used to hearing the dangers of the flu and other viruses for people with weak or suppressed immune systems. The flu is just as dangerous for me, but not because I’m immunocompromised. In fact, just the opposite.

My mast cells fight wars they’ve already won. They swiftly kill the virus, and then proceed to kill me. My immune system doesn’t know when to stop.

After seven days, the fevers waned, but I did not feel better. I attempted to go back to work, but the floor started bouncing. Benadryl every four hours wasn’t enough. I worried the pressure in my head would cause another CSF leak. So, I dug out my favorite poison: prednisone.

Maybe Ebenezer Scrooge just needed some prednisone, because within two days, I was buzzing with the Christmas spirit. As the prednisone tamed my mast cells, I shopped, wrapped, and decorated like one of Santa’s elves. Usually the holidays are a nightmare of unrealistic expectations, but this year I crushed my to-do list with energy to spare, confusing everyone. Don’t get used to it; you’re all getting unscented deodorant and a “bah humbug” next year.

The time between Christmas and New Year’s, when no one needs a calendar or real pants, is the perfect time to taper prednisone. For me, tapering prednisone means laying on the couch and staring at the wall, as optimism drains from my soul. I aimed to get it over with before the new year, because I wanted to start the year off on the right foot. Or left. At least standing.

Within a few days of coming off prednisone, my ear tubes began to ache. My mast cells were still reacting to the virus they killed a month and a half ago. I ignored it, hoping they would calm down, but the congestion in my head continued to build.

One night, after hours of painsomnia, I dreamed I went on a girls’ trip. The five of us innertubed from northern Italy to California (via the Mississippi River, obviously). The water must have been pretty rough, because I woke up with a subluxated jaw. The inflammation in my ear had gotten so bad that my jaw slipped out of the socket. I tried to ignore that pain too, but a spoonful of rice left me crying for another round of prednisone.

So instead of starting the new year motivated, I medicated. Luckily, this was just a cold. In 2016, I caught the flu and needed an ambulance and hospitalization.

I wish my mast cells had a reset button. I wish people kept their germs to themselves. I wish I could take prednisone for the rest of my life and become the most productive person in the history of the universe. Instead, I’ll embrace my solitary confinement and remind you not to kill me.