Post-surgical rage

It’s been five days since my gallbladder removal. I just want to know if I’m going to poop my pants.

Everyone warned me fatty foods will send me running to the toilet. I asked every doctor and nurse if I was going to poop my pants. They all laughed and said no. They said I could eat anything. I don’t believe any of them.

So, I resolved to eat cautiously. I ate chicken and rice for two days. I iced my belly, and watched movies with my poodles.

Everything was fine… until the prednisone kicked in.

Low-fat dieting and 50mg of prednisone ARE NOT COMPATIBLE.

Even though I tried to taper the prednisone as soon as I could, my body is screaming for more food than my stomach can handle. On top of that, I am so angry.

I’m angry I can’t eat peanut butter cups.

I’m angry I’m in too much pain to make my own safe foods.

I’m angry nobody can tell me when I’m going to poop nor how violent it will be.

I’m angry nobody can tell me why my gallbladder was my latest mast cell disease casualty. (No gallstones.)

I’m angry I have to sit with this anger until it passes.

I’m angry that my anger is overshadowing the wonderful care I received all week from nurses and friends.

Finally, I am so angry that last night, as I took my dogs out to pee, my neighbor shouted from his patio, “How are you?”

I wanted to yell, “ARE YOU F%@$ING KIDDING ME?!?! I JUST HAD AN ORGAN REMOVED BECAUSE MY BODY IS DYING FROM YOUR LAUNDRY FUMES!”

I am so angry that nothing I could have yelled would have helped. I stomped off.

Soon I will poop. Soon I will feel better. Soon my neighbor will receive a lawsuit.

How to ask for a fragrance disability accommodation from a business

Pumpkin spice is here, whether you like it or not.

For me, pumpkin spice is synonymous with death. I don’t just mean in the figurative sense–the end of summer, trees shedding their leaves, and the demise of sensible shoppers.

No, I mean literally. Before September, I already had suffocated from a displaced pumpkin spice broom in a home improvement store. The cinnamon pine cones are sure to follow, filling everyone’s lungs with harmful particles.

Listen, enjoy your latte, but there is no need for pumpkin spice kitty litter. The cats are already suffering.

The problem with seasonal fragrances is I have no idea where they are going to pop up. I usually smell them before I see them, and then it’s too late. Even with rescue medications, my reactions last at least several hours, if not days.

Last year, I had a major victory. I requested my local grocery store remove its cinnamon pine cones… and they did! It took some time–because corporate bureaucracy–but they eventually responded:

“Over the weekend we were able to get approval to remove this product from our floral department. We won’t have them in store after today. Thank you for your patience while we found a resolution for you.”

A few weeks later, I requested another business to stop lighting a candle near its cash register. Their response was even better:

“I am so sorry our candles caused a reaction. We have had a handful of concerns so we understand now the issues the fragrances can cause and will remove them. Thank you for giving us an opportunity to hear you and help.”

In the United States, fragrance sensitivity can be considered a disability and the Americans with Disabilities Act (ADA) requires businesses to make reasonable modifications for people with disabilities.

“ADA requires businesses to make “reasonable modifications” to their usual ways of doing things when serving people with disabilities… Anything that would result in a fundamental alteration – a change in the essential nature of your business – is not required.” – U.S. Department of Justice

Tips for requesting a fragrance disability modification from a business

  • Write an email to the business. It is important to keep a written record of accommodation/modification requests.
  • I prefer to call it a “fragrance disability” instead of a “fragrance sensitivity” when possible.
  • Be specific. Name the store location and product.
  • Be reasonable. The businesses can deny unreasonable requests (e.g. removing all fragrances at all locations). A reasonable modification might be moving fragrant products away from high traffic areas, such as the entrance and cash registers.
  • Be kind and thank the business for its modifications.

Example email for U.S. businesses

I am requesting an ADA reasonable modification for my disability at [store name] in [city]. Today, I had a severe reaction to [product] at your store. I am requesting you to [move or remove the product from a specific area] from your store. I have been a customer for many years; however, I cannot continue to risk my health to shop at your store. A 2019 research study found 32.2% of adults suffer from fragrance sensitivity; this modification will likely benefit other customers.

Thank you,

[Your name]


 

I’d love to hear your experiences requesting fragrance disability accommodations from a business! Email me at hellsbellsandmastcells@gmail.com.

Sticks and stones may break my bones, but pine cones will surely kill me

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.

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.