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.

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.

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.

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:

Don’t steal my joy
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.