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.

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.