A letter for your members of Congress

Step 1. Read this letter.

Step 2. If you live in the US, find the contact information for the three members of Congress (two U.S. senators and one U.S. representative) that represent you.

Step 3. Copy, paste, and edit this letter. Here’s a Google doc version of the letter. Send it to each of your three members of Congress via U.S. postal mail, email, or webform.

Step 4. Let me know in the comments or on social media who you sent your letters to!


 

Dear [member of Congress], 

I am writing regarding the FDA’s request to remove all ranitidine products (including Zantac) from the market in April 2020. While ranitidine is commonly known as a medication that reduces heartburn discomfort, it is a critical daily antihistamine for people, like me, who have mast cell disease. 

Many mast cell disease patients depend on ranitidine to eat, move, and sleep. Mast cell disease causes excessive release of histamine. Ranitidine is an antihistamine that blocks histamine H2 receptors, which are located throughout the body, including the brain and cardiovascular system. Without an effective H2 blocker, mast cell patients can experience severe allergic reactions including nausea, vomiting, hives, migraine, sleep disruptions, asthma, throat swelling, pulmonary edema, and life-threatening complications. 

For many mast cell patients, the known benefits of taking ranitidine outweigh the potential health risks cited by the FDA. In its April 1, 2020 statement, the FDA announced, “NDMA is a probable human carcinogen (a substance that could cause cancer). In the summer of 2019, the FDA became aware of independent laboratory testing that found NDMA in ranitidine. Low levels of NDMA are commonly ingested in the diet, for example NDMA is present in foods and in water.” If ranitidine’s potential risk is less than common foods, such as bacon and cured cheese, doctors should be allowed to decide whether or not to prescribe ranitidine. There are no known cases of cancer caused by ranitidine.

The FDA seems completely unaware of the impact its actions on mast cell disease patients. While other H2 blockers such as famotidine (Pepcid) and cimetidine (Tagamet) may be effective alternatives for people without mast cell disease, this is uncommon among mast cell disease patients. As a result, mast cell patients are turning to medications, such as steroids and biologics, which have proven health risks.  

The timing of FDA’s actions is alarming. The loss of ranitidine puts unnecessary strain on an already overwhelmed health care system. Furthermore, the FDA’s actions have contributed to drug shortages of famotidine. At the same time, researchers are stockpiling famotidine for COVID-19 clinical trials. Many mast cell patients are struggling to access any (prescription, compounded, or OTC) H2 blocker medication.

Please urge the FDA to reconsider its actions and allow ranitidine to immediately return the prescription market.

Sincerely,

[your first and last name]
[your street address]
[city, state zip code]

 

What I miss most

Over a year ago, I had to quit my writing group. Not because they didn’t accommodate my disabilities, but even with accommodations, my body was too tired and painful to go to someone else’s house after work. I almost cried when my groupmates reached out last month and offered to meet over Zoom. Not only did I get to stay at home, but I had energy to enjoy it.

The pandemic continues to create new opportunities for me. This week, encouraged by my writing group experience, I signed up for a virtual writing workshop with one of my favorite authors, Samantha Irby. (Check out her new book, Wow, No Thank You.) The workshop challenged participants with the following prompt: What do you miss from your pre-pandemic life?

My immediate reaction was NOT MUCH.

Do I miss forcing my disabled body into the office every day? Peoples’ disregard for my health and safety? My friends forgetting to check on me due to busy schedules? Inaccessible authors’ events and writing workshops?

Brimming with gratitude and sarcasm, this is what I wrote:

I miss the fear I used to induce when wearing a mask. Before Americans cared about breathing, my N95 declared I was different. In a bad way, of course. I chose a black fabric to discourage any double takes. On the bad days, when my muscles ached with inflammation, I hummed the Imperial March as coworkers and grocery shoppers scurried away. No more wasting energy on small talk or pretending to fit in. Most people worried I was sick or weird–the difference didn’t really matter as long as it didn’t affect them. Only the bravest, people who had been through hard shit too, made direct eye contact and befriended me.

Now that masks are cool, I can’t distinguish the empaths from the assholes. Are they wearing one to protect others too or do they only care about themselves? Worst of all, I’m no longer protected from expectations or criticism. Recently, when I took off my mask in order to load my groceries into my car with adequate oxygen flow, a customer lectured me on the importance of masks. My disability parking permit just doesn’t wield the same power.

My worst Easter

Growing up, my parents were pretty sloppy about their holidays lies. Mostly, they enjoyed sleeping more than I did. When I was six, I discovered my mom hiding Easter eggs in the backyard just before breakfast. Instead of confronting my parents, I quietly watched from my bedroom window, memorizing each of her hiding spots. I didn’t want to ruin the Easter Bunny for my younger brother, but I also didn’t want him to get any of the eggs.

So, when I mom shook me awake on Easter morning at age 7, I was surprised and suspicious.

“Wake up! Wake up! Come look out the window!” she said, pulling back my covers. At first, it sounded like a trap, but then I remembered it was a holiday and there may be gifts involved. I followed my mom and my brother to the dining room window.

The sun had just started to rise behind the tall evergreens in our backyard.

“Look!” she said. I searched the greenery for the neon eggs I’d been trained to find. “Under the tree!”

A giant white mass stirred under the pine tree. It bounced towards the window and stood up: a seven-foot-tall creature topped with a bulbous head and two wonky ears. It waved at us with its white mitten. My brother and I gasped, but for different reasons. The oversized rabbit slowly turned, without moving its neck, and hopped in a circle with great effort.

The tallest person I knew was my dad. It must be dad, I reassured myself.

Just as I was about to take a deep breath, my dad entered the room and exclaimed, “The Easter Bunny is in our yard!”

My stomach dropped.

“WHO IS THAT?!” I demanded, as my heart pounded. The white monster was facing the window again and waving. Its big, blank eyes followed me as I shrunk behind my mom.

“It’s the Easter bunny!” my parents shouted with pride. My brother grinned and waved back.

“WHO IS THAT?!” I shouted. Grandma and grandpa were too old to play dress up. I couldn’t think of anyone else. The backyard had always been my safe haven.

“It’s the Easter bunny! It’s just hopping through the neighborhood,” my parents said.

“TELL ME!” I shouted with tears welling in my eyes.

This where my parents made their second mistake.

“We don’t know who it is!” they said, finally acknowledging that I was too old to believe in the Easter Bunny. Unfortunately, they did not acknowledge the trauma of being ambushed by a seven foot rabbit regardless of age.

“WHAT DO YOU MEAN YOU DON’T KNOW?!” I screamed.

Several hours later, after it was clear no amount of chocolate could justify the monster strolling through the backyard, my dad confessed the bunny was his co-worker. He definitely thought that would lessen my fears, but here I am, writing about it at age 33. Plus, have you seen Donnie Darko?!

*****

This year, people around the world are spending Easter in isolation due to the pandemic. To be honest, I’m grateful. This is my fifth Easter in isolation due to mast cell disease and I’m tired  of inciting pity and discomfort when I tell friends and co-workers that I spent a holiday alone. People assume spending holidays alone is the worst. It’s certainly not my first choice, but I also appreciate my holiday autonomy. I focus on activities I can enjoy, and abandon any traditions I don’t. Most importantly, I am safe from the Easter Bunny. (I shut my shades just in case.)

*****

A few years after the Easter Bunny incident, my parents went out of town. They let me sleep over at a friend’s house. She loved animals as much as I did, but my parents wouldn’t let me have a pet.

When my parents came home from their trip, I met them at the front door with a large hat and wand in my hands.

“I learned a new magic trick while you were gone!” I gleamed. “Abracadabra!”

I waved my wand, reached into the hat, and pulled out a black and white mini lop.

“Isn’t that an awesome magic trick?” I asked my stunned parents. “He’s mine now!”

The karma of bunny magic.