Sh%t I say in the emergency room

My nine-month emergency room boycott ended on Tuesday. Around noon, the floor started to bounce. I crawled around my office unconcerned for about an hour, until a migraine threatened to take my vision. Benadryl, my magic duct tape, did nothing. I told myself I was probably anemic again, and all I needed was simple blood test.

The emergency room is always a gamble. Sometimes I receive great care; other times I am completely dismissed, regardless of my symptoms. This makes me incredibly nervous. When I am nervous, I tell jokes uncontrollably.

A quiet emergency room is a sign of good luck. On Tuesday, the check-in nurse led me straight to a room. Within a minute of changing into a hospital gown, the doctor appeared. I explained my symptoms and concerns, searching the doctor’s face for subtle reactions.

She asked, “Any chance you’re pregnant?”

“No,” I said. She might as well have asked if there’s any chance I had traveled to the moon.

“How do you know?” she asked.

I tried to think of the correct answer, the answer she would like to hear. I had given the wrong response once before. An anesthesiologist had asked me, “Are you sure?” and I replied, “Unless I’m having baby Jesus.” He ordered a pregnancy test.

I hate this question, because it second-guesses women’s knowledge of their own bodies. Yet, having watched an entire season of “I Didn’t Know I Was Pregnant,” I understand why it is necessary. I feel like a more pragmatic question might be, “Have you seen a penis in the past nine months?”

As I tried to carefully formulate words, I got nervous and blurted, “Because the newspaper printed that I’m allergic to men.”

For full effect, I dug out a copy of the local newspaper from my tote bag, and plopped it on the hospital bed.

“That’s you,” said the nurse, pointing to the front-page photo of me wearing the same green gown.

I’m not sure which was most disconcerting to the doctor: my allergy to men or that I carry a newspaper of myself? To be honest, I packed it out of fear that I wouldn’t be taken seriously. In the past, doctors have even disregarded my emergency protocol. Perhaps, a newspaper would be more convincing?

I hadn’t anticipated using it for self-sabotage.

The ER doctor did not laugh at my hilarious joke. This just makes me more nervous and want to try harder to elicit laughs. However, she did order the blood tests and fluids, and even offered Benadryl. I relaxed and the jokes thankfully stopped.

P.S. Yes, my local newspaper wrote an article about me. Check it out.

How to tell someone they smell

Based on my research, people don’t react kindly when you tell them they smell. In fact, it seems to be the quickest way to evoke paranoia.

Technically, everyone smells. Whether it’s from a fresh shower or natural body oils, even the cleanest people have a scent. Just ask my poodle.

However, I am specifically referring to people who drown their bodies in fragrance: perfume, cologne, lotions, deodorant, and detergent. These fragrances can be life-threatening for people with mast cell disease. Just a few seconds of exposure can destroy my health for several days.

Although I try to stick to scent-free environments where people understand my fragrance disability, inevitably someone forgets or doesn’t care. When I was first diagnosed, I tried to be Minnesota Nice and avoid the offenders, but avoidance only left me with two choices: never leave my home or destroy my body. After months of puking, pooping, and gasping for air, I began confronting people.

3 ways to tell someone they smell:

  • Yell “Skunk!” and run away
  • Slap a Mr. Yuck sticker on them
  • Start a game of “Duck, Duck, Smelly Duck”

“You smell” became my default declaration. Every time I sputtered those words, terror swept across the offender’s face, as if they were the one dying. I realize my delivery was not great. In my defense, it’s about all I could manage to say. When your body reacts to fragrance, your organs swell and your oxygen levels drop. Sometimes I become so confused that I forget to flee the room or take my medicine. I fumble for words.

“You smell” was never meant to be a personal attack. I hoped any embarrassment would convince them to respect the scent-free environment. It usually did not. They did not understand the long-term damage caused by their fragrances. I realized it’s easy to tell someone they smell, but it’s hard to explain the consequences.

When I say “you smell,” I mean you’re killing me.

Since my mast cell disease diagnosis four year ago, I have become braver about educating people about my fragrance disability. I have learned requesting scent-free environments is not selfishness. Spreading awareness does not just benefit me; it protects the health of other people with mast cell disease and conditions that cause fragrance sensitivities, such as migraine and asthma.

3 ways to tell someone they smell and it’s harmful:

  • Hand them your EpiPen and say, “You might need this.”
  • Write a passive aggressive blog post and send them the link
  • Email, text, or talk to them after you recover from your reaction. Specifically explain how fragrance affects your body. For example, fragrance reactions can permanently damage my kidney. Probably try this option first.

Of course, you always run the risk of finding out someone is a complete jerk, who doesn’t care if you suffocate or lose an organ. There will always be that one person who suggests you “just wear a mask” without understanding masks don’t block fumes, but they do reduce oxygen flow. It’s best to avoid assholes, whether you have a disability or not.

Before you judge my dog’s birthday party

Last month, my oldest toy poodle, Quixote turned TEN years old! Quixote is my first dog and has boldly taught me everything I know about poodles. He is a ruthless, but effective physical therapist. He forces me to socialize in hopes of scoring treats from strangers.

Of course, I had to spoil him with the perfect gift.

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A Charmin Forever Roll! A 12” roll of toilet paper, one of Quixote’s favorite vices. At first, I wanted to order the Forever Roll for myself. Charmin offers a money-back guarantee: Go up to one month before changing your roll. As someone who endured two colonoscopies in one year, I feel like that’s a bad business plan. My mast cells love a challenge. Then I realized my blog readers would much rather see pictures of my poodle than hear about how much I pooped in a month.

Quixote’s birthday serendipitously fell on the same day as his weekly agility class, so I also threw him a birthday party. There were hats, treats, and party favors.

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I worried these Facebook photos might undermine the seriousness of my health challenges. I try not to care what people think, but unfortunately image does matter when you’re of the precipice of crowdfunding.

I know a lot people of people think dog birthday parties are ridiculous. In fact, some people believe all birthday parties are ridiculous. I have a couple words for these people:

  1. Don’t steal my joy
  2. Prepare to feel like an asshole

First of all, it cost almost nothing. You better believe I collected every half-chewed stream of toilet paper and place them in a bag by my toilet. The mini hats were on clearance, because they look absurd on humans, and the lottery tickets technically made money. The balls were less than a dollar, even though Boost the Aussie thinks they’re worth a million.

Second, I miss celebrating birthdays. In fact, I miss celebrating all occasions with others. Because of MCAS, I usually spend my birthdays and Christmas alone. I can’t go to restaurants or parties with friends and family anymore. At the same time, I need celebration more than ever to offset my health challenges. Right now, my life just feels like a series of fights and losses. Quixote’s birthday was the perfect opportunity to share joy in a safe space. Feel like a jerk, yet?

Furthermore, I’m allergic to men, babies, and baby-making. I cannot imagine how many ways childbirth would destroy my body, nor how I would take care of children when I can barely care for myself. Plus, MCAS appears to have a genetic component. Instead of wallowing in my fear that I may never be able to have kids, I am focusing on the family I do have, even if it’s not human.

Finally, my dog has helped me and continues to help me get through hard times. At first glance, his help appears self-serving. Quixote keeps me on a strict schedule of meals, bathroom breaks, and exercise. He is the reason I get up in the morning and the reason I go outside. He is the reason I regained strength in my body. He is the reason I learned how to ask for help when I need it. He is the reason I keep fighting.

P.S. I am honored to have been nominated as a WEGO Health Awards Hilarious Patient Leader. If you haven’t already, please endorse me to raise awareness for mast cell disease, EDS, and POTS!

 

The Three Little Pigs and the Big Bad Dryer

Once upon a time, there were three little pigs, all with mast cell disease. The pigs lived on an American farm where antibiotics and pesticides were heavily used. As the pigs became sicker, they decided to escape the farm and move into three condos in the same building in the city. They loved their safe condos in the city.

One day, all three of the little pigs felt very ill. They noticed a flowery fragrance seeping through their condo vents. Their throats and heads swelled. They vomited and couldn’t think. When they asked the condo association about the smell, they learned their neighbor had recently installed a ventless dryer.

The dryer huffed and puffed and blew volatile organic compounds (VOCs) all over the condo building to the detriment of everyone’s health, especially the three little pigs.

The first pig cried, “Not by the flare of my skinny, skin, skin!” and filed a nuisance complaint with the condo association. The association asked the neighbor to stop using dryer sheets, but decided the fragrance was otherwise negligible. The first pig had no choice but to return to the farm, and shortly after, was turned into bacon.

The dryer huffed and puffed and continued to blow VOCs all over the condo building, even without the dryer sheets.

The second pig cried, “Not by the flare of my skinny, skin, skin!” and filed an American Pigs with Disabilities Act reasonable accommodation request with the condo association. The association inspected the common areas of condo building, which were not affected by the dryer fumes, and consequently, could not offer any reasonable accommodations. The second pig had no choice but to return to the farm, and shortly after, was turned into sausage links.

The dryer huffed and puffed and continued to blow VOCs into the lungs of the building residents.

The third pig cried, “Not by the flare of my skinny, skin, skin!” and filed Fair Housing Act reasonable accommodation request with the condo association. The third pig also provided medical documentation of her disability. The condo association had never heard of this before, and didn’t take the request seriously until the third pig threatened to sue. The condo association passed a new policy requiring homeowners with ventless dryers to use low VOC, unscented laundry products. If the residents insisted on using fragrant products, the association recommended they use one of the vented dryers available to all residents in the common areas.

And the third little pig lived happily ever after, except for ongoing, non-dryer-related, life-threatening mast cell reactions!

Learn more about ADA and FHA disability accommodations for housing.

P.S. While I hope for a fairy tale ending, I’m still legally battling my neighbor and association.

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.”