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.

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.

Fighting for MCAS

In many ways, 2019 was my worst year. My home became unsafe due to my neighbor’s laundry fumes. Even with air purifiers and a Vogmask, I couldn’t use my own bathroom without suffering from MCAS reactions. I missed meals and napped on the floor of my office, because I had nowhere to safely make food or sleep. Due to MCAS, I could not stay at a hotel or a friend’s house. Moving was not a reliably safe option either. Besides, I was already drowning in medical debt, living paycheck-to-paycheck despite working full-time at a well-paying job. I cried often and worried I was going to lose everything. The toll on my body resulted in emergency surgery in September.

But that’s not how I will remember 2019.

I was diagnosed with mast cell activation syndrome (MCAS) in December 2015. For the first three years of diagnosis, it seemed like every minute of every day was spent fighting a reaction. Eating, working, and sleeping seemed impossible. Sometimes I couldn’t walk. My body felt like an unruly toddler, throwing tantrums despite every attempt I made to appease it. I quickly learned medications were not enough.

My mast cells wanted a safer environment. So, I resigned to solitary confinement. (Technically not solitary confinement, because I had internet access, but you should still feel sorry for me.) As my mast cells quieted down, I realized my body is not my enemy. My mast cells are simply trying to protect me from a world swirling with chemicals.

This year, I switched from fighting my body to fighting FOR my body.

For me, the worst part of MCAS is not the lack of treatments or the hospitalizations, but people’s unwillingness to accommodate my health: a coworker who sprays perfume at the expense of my lungs, a neighbor who values fragrant laundry over my ability to eat and sleep, or a doctor who refuses to follow my medication protocol because he’s unfamiliar with MCAS.

Our world does not support MCAS patients. It prioritizes chemicals over people. In 2019, I was done feeling like my body was the problem and undeserving of accommodations. Here are some ways I fought for my body this year:

  • Filed a complaint with the Minnesota Board of Medical Practice. In 2018, a hospitalist refused to follow my emergency protocol and cut off my Benadryl and Diluadid in the middle of the night (after my friends left) and ordered morphine instead. Morphine is dangerous for MCAS patients and listed as an allergy in my chart. The board did not discipline the doctor; however, the complaint is on her permanent file. More importantly, the hospital made sure I received excellent care for my emergency surgery this year.
  • Shared my story with my local newspaper. The reporter interviewed me for one-hour, requested supporting documentation, and interviewed two of my friends. The interview was more stressful than I anticipated (hives!), but the front-page story changed my life and my ability to get people to understand my life with MCAS.
  • Asked for financial help. I think I threw up seven times before posting my GoFundMe, but my options were to lose my condo or ask for financial help. My deepest fear was that I wouldn’t receive the help I need, and I would confirm my feelings that I am not worthy enough to keep my home and survive. (Not true!) I raised $3k for a lawyer and safety improvements to my condo. After my newspaper story published, a local family paid my medical bills and I cried until I had to stop and take Benadryl.
  • Requested air fresheners be removed as a disability accommodation. Two businesses I frequent had air fresheners in their bathrooms. This year, I submitted formal ADA requests in writing. Although, the businesses were resistant at first, after my newspaper story published, the air fresheners disappeared forever.
  • Filed a discrimination complaint with the U.S. Department of Housing and Urban Development. I asked for my condo association to implement a fragrance-free laundry product policy as a disability accommodation under the Fair Housing Act. Instead, my condo association recommended I move several times. That is discrimination. HUD is currently requesting my condo association adopt the policy.
  • Drafted state legislation. Can’t wait to share more on this soon!

I wanted to give up so many times this year! I cried until I puked and I screamed into pillows. Other times, I was so tired or in pain that I couldn’t imagine responding to anymore legal letters. When I hit these breaking points, I stopped everything and rested. I reminded myself I’m not just fighting for my life, I am fighting for all people with MCAS. Then I planned the next tiny step I would take when I was ready.

Let me tell you about a few more moments that gave me hope:

  • When I was admitted to the hospital, my nurse was excited to meet another mast cell disease patient. His son had mastocytosis.
  • My pre-op nurse said she knew exactly how to time my pre-medications, because she had a daughter with MCAS.
  • During an emergency room visit for a hemiplegic migraine, a neurologist asked me to give a 10-minute speech on MCAS for the residents. He ended my lecture by saying, “This is why we listen to patients who know how to manage their disease.”

This year, I was grateful and angry, hopeful and scared. I’m taking all of these feelings into 2020 and continuing the fight for MCAS. I hope you’ll join me.

Oversharing

My best friend was coming over to spend the night for the first time. I could barely sit still while my right foot soaked in a bucket of warm water before she arrived. I had slept over at her house many times, but she had been too afraid to sleep at mine. Her fear baffled me. We just had conquered first grade and she had played happily at my house for countless hours. Besides, the best part of a sleepover is escaping your parents and their rules!

My mom, sitting in a chair across from me, picked up my right foot, wiped it with a towel, and set it on her knee for our nightly ritual. A plantar wart had taken root in the center of my heel–evidence of a summer well-spent at the local pool. My mom assured me the wart wouldn’t hurt me, although as she scraped away the dead skin, I questioned her intentions and kicked her a few times. Afterwards, I admired the progress of the wart’s eviction–my tiny science experiment.

This night, however, the wart surrendered, releasing from my foot and dropping into the bucket of water below. My mom and I cheered. “I want to see it!” I begged, eager to size up the enemy. To my surprise, the wart floated like a tiny jellyfish with long, translucent tentacles swaying in the water. I assessed the damaged to my foot–a deep, yet, smooth, red crater.

“You cannot mention this tonight,” my mom warned. “You’ll freak her out.”

I had briefly forgotten about my long-anticipated sleepover. I imagined my friend’s overreaction, the horror in her eyes. “Duh,” I told my mom.

When my friend arrived, I raced to show her all the cool things in my house. Or least the most interesting things and tried to make them sound cool. After about an hour, I ran out of ideas. I sensed her boredom; she sensed my desperation. I closed my bedroom door and asked, “Wanna see my foot?”

I whipped off my sock and presented my heel. She didn’t scream or gasp. She stared as I told her everything my mom had taught me about warts. I assured her that it was no longer contagious. I studied her face. She seemed curious, not frightened. I put my sock back on to reassure her, just in case.

Later that night, when I was brushing my teeth, I heard my friend talking to my mom in the kitchen. I heard the phone be lifted from its receiver. My mom appeared in the bathroom doorway. “I told you not to talk about your foot!” she scolded me.

Fifteen minutes later, my friend’s mom came to pick her.

*****

So, the main reason I created this blog was because my Facebook friends couldn’t handle my oversharing. Turns out everyone wants to be your Facebook friend until you post something boring, frightening, or disgusting. Well, I’m not boring.

Chronic illness has increased what I like to call my “generous honesty”. Life is too short for small talk and I left all my shame in an ambulance in Florida. I have never sugarcoated my illness and if you ask me what I did last weekend, I am going to tell you which body part broke.

I share my experiences on social media for many reasons:

  1. I live in solitary confinement and poodles are bad listeners
  2. Sometimes I need validation that my disease is total shit and I am a badass
  3. Therapy is expensive and my last therapist quit the profession, which is way more insulting being unfriended on Facebook

But most importantly, my posts help people. Yes, my stories are terrifying and sometimes disgusting, but everyone has body that is probably going to do some scary shit before inevitably falling apart. I feel a duty to normalize illness and disability, because for every ten people who unfriend me, one person privately messages me and thanks me for sharing my experience.

*****

The next summer, shortly after graduating from second grade, the phone rang. “It’s for you,” my mom said.

“Hello?” I answered.

My friend softly stuttered on the other end. She said, “I have wart on my foot, and my mom and I were wondering how you got rid of yours.”

Why I made an encouragement board instead of a vision board

Every January, I make a vision board. To be honest, I enjoy the craft portion of the project most. A vision board is basically a pretentious collage that makes me sound like I have my shit together. It’s supposed to convey your dreams and leverage the law of attraction to make them happen. Yet, I never put a hospital on my vision board, but I can’t seem to stay out of one.

This year I am forgoing the traditional vision board for three reasons:

1. I am overly ambitious; my body is not

Before vision boards, I wrote resolutions. For example, here are my New Year’s resolutions from when I was 15 years old:

  • No chocolate except for special occasions
  • Find a volunteer job
  • Fix my many social problems or just shut up when necessary
  • Save $150 a month
  • Journal 3 times a week
  • Keep my face clear
  • Do all the other stuff I can’t think of right now

Well, that pretty much covers it. I was not a cool 15-year-old and I did not get more reasonable about my goals with age. I still eat chocolate every day and my face is usually dotted with hives. Let’s not even discuss the social problems. For the record, I did get the volunteer job… AT A HOSPITAL. These days I’m lucky if I can even keep my paying job. Vision boards and resolutions alike are loaded with guilt and regret.

2. The universe misinterprets my visions

In case you missed it, read last year’s warning about vision boards.

3. My friend refused to participate in our vision board tradition this year

Technically, we’ve only made them together once, but since my mast cells forbid all of my other traditions, it’s officially our thing. Maybe she refused this year because last year she was a little too scissor-happy with the yoga magazines and now feels guilty. Or maybe it’s because when we craft, I try to work “modge podge” and “she shed” into the conversation every 10 minutes, because I think it’s hilarious. She reminds me it’s actually called “mod podge” and I become more persistent. MODGE PODGE.

*****

This year, I decided I am making an encouragement board instead. Yes, that does sound even more nauseating than a vision board. Yes, a unvision board would be way more fun to make. (A unvision board is a collage of things you wish you could unsee. Yes, I totally made that up.) But after another year of pursuing the same dreams, getting knocked down and beat up, and feeling totally out of control, I need an encouragement board.

This past year, my friends and readers have kept me going. When I was in the hospital, your encouragement gave me strength to keep fighting and hope that I would recover. Oftentimes, I didn’t feel like writing, but the messages of support reminded me my writing helps people laugh and feel less alone. I dug up these messages time and time again when I felt low. Finally, it occurred to me to print these messages and make a collage.

Here’s what else my encouragement board entails:

  • A 11”x14” foam board
  • Scrapbook paper for the background
  • Inspirational quotes
  • Magazine clippings
  • MODGE PODGE (use doubled sided tape if you react)

Chances are you don’t have a blog and dozens of comments feeding your ego. However, I bet if you shared your dreams on social media, you’d also receive encouragement. Maybe from people you didn’t expect. And you can always print this out:

I BELIEVE IN YOU! YOU ARE AWESOME! – Hell’s Bells and Mast Cells