Fighting for MCAS

In many ways, 2019 was my worst year. My home became unsafe due to my neighbor’s laundry fumes. Even with air purifiers and a Vogmask, I couldn’t use my own bathroom without suffering from MCAS reactions. I missed meals and napped on the floor of my office, because I had nowhere to safely make food or sleep. Due to MCAS, I could not stay at a hotel or a friend’s house. Moving was not a reliably safe option either. Besides, I was already drowning in medical debt, living paycheck-to-paycheck despite working full-time at a well-paying job. I cried often and worried I was going to lose everything. The toll on my body resulted in emergency surgery in September.

But that’s not how I will remember 2019.

I was diagnosed with mast cell activation syndrome (MCAS) in December 2015. For the first three years of diagnosis, it seemed like every minute of every day was spent fighting a reaction. Eating, working, and sleeping seemed impossible. Sometimes I couldn’t walk. My body felt like an unruly toddler, throwing tantrums despite every attempt I made to appease it. I quickly learned medications were not enough.

My mast cells wanted a safer environment. So, I resigned to solitary confinement. (Technically not solitary confinement, because I had internet access, but you should still feel sorry for me.) As my mast cells quieted down, I realized my body is not my enemy. My mast cells are simply trying to protect me from a world swirling with chemicals.

This year, I switched from fighting my body to fighting FOR my body.

For me, the worst part of MCAS is not the lack of treatments or the hospitalizations, but people’s unwillingness to accommodate my health: a coworker who sprays perfume at the expense of my lungs, a neighbor who values fragrant laundry over my ability to eat and sleep, or a doctor who refuses to follow my medication protocol because he’s unfamiliar with MCAS.

Our world does not support MCAS patients. It prioritizes chemicals over people. In 2019, I was done feeling like my body was the problem and undeserving of accommodations. Here are some ways I fought for my body this year:

  • Filed a complaint with the Minnesota Board of Medical Practice. In 2018, a hospitalist refused to follow my emergency protocol and cut off my Benadryl and Diluadid in the middle of the night (after my friends left) and ordered morphine instead. Morphine is dangerous for MCAS patients and listed as an allergy in my chart. The board did not discipline the doctor; however, the complaint is on her permanent file. More importantly, the hospital made sure I received excellent care for my emergency surgery this year.
  • Shared my story with my local newspaper. The reporter interviewed me for one-hour, requested supporting documentation, and interviewed two of my friends. The interview was more stressful than I anticipated (hives!), but the front-page story changed my life and my ability to get people to understand my life with MCAS.
  • Asked for financial help. I think I threw up seven times before posting my GoFundMe, but my options were to lose my condo or ask for financial help. My deepest fear was that I wouldn’t receive the help I need, and I would confirm my feelings that I am not worthy enough to keep my home and survive. (Not true!) I raised $3k for a lawyer and safety improvements to my condo. After my newspaper story published, a local family paid my medical bills and I cried until I had to stop and take Benadryl.
  • Requested air fresheners be removed as a disability accommodation. Two businesses I frequent had air fresheners in their bathrooms. This year, I submitted formal ADA requests in writing. Although, the businesses were resistant at first, after my newspaper story published, the air fresheners disappeared forever.
  • Filed a discrimination complaint with the U.S. Department of Housing and Urban Development. I asked for my condo association to implement a fragrance-free laundry product policy as a disability accommodation under the Fair Housing Act. Instead, my condo association recommended I move several times. That is discrimination. HUD is currently requesting my condo association adopt the policy.
  • Drafted state legislation. Can’t wait to share more on this soon!

I wanted to give up so many times this year! I cried until I puked and I screamed into pillows. Other times, I was so tired or in pain that I couldn’t imagine responding to anymore legal letters. When I hit these breaking points, I stopped everything and rested. I reminded myself I’m not just fighting for my life, I am fighting for all people with MCAS. Then I planned the next tiny step I would take when I was ready.

Let me tell you about a few more moments that gave me hope:

  • When I was admitted to the hospital, my nurse was excited to meet another mast cell disease patient. His son had mastocytosis.
  • My pre-op nurse said she knew exactly how to time my pre-medications, because she had a daughter with MCAS.
  • During an emergency room visit for a hemiplegic migraine, a neurologist asked me to give a 10-minute speech on MCAS for the residents. He ended my lecture by saying, “This is why we listen to patients who know how to manage their disease.”

This year, I was grateful and angry, hopeful and scared. I’m taking all of these feelings into 2020 and continuing the fight for MCAS. I hope you’ll join me.

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!

 

I am disabled: How the Americans with Disabilities Act helps me every day

This post is for the people who cringed when I started calling myself disabled and, more importantly, for anyone who is uneasy about calling themselves disabled (because of the people who cringe). I get the sense that some people cringe because I don’t fit their definition of disabled or they dislike the word entirely.

Do you know what makes me cringe? The thought of losing my job. The thought of losing my health care. The thought of being unable to pay my bills, and losing my home.

I don’t feel like identifying as a disabled person was a choice. I started calling myself disabled in order to keep my full-time job. This is confusing to some people, who believe disabled people cannot work. The truth is the majority of disabled Americans do not receive disability benefit payments.

The U.S. government has multiple definitions of disability.The Social Security Act defines a person with a disability as someone who is unable to work due to a medical condition. However, the Americans with Disabilities Act (ADA) defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”

I benefited from ADA before I considered myself disabled. In 2015, before my MCAS diagnosis, I developed severe arthritis in my hips. Sometimes I wished I had a wheelchair, but I was certain doctors would fix me soon (hahaha). Eventually, the three-block walk from my contract parking space to my office building became impossible. I started calling in sick because I couldn’t tolerate the pain. Finally, I asked my doctor for a disability parking permit. Albeit, a temporary one.

But I didn’t get better.

About the same time I was diagnosed with mast cell activation syndrome, I started having life-threatening reactions at work to fragrance. Panic attacks pummeled me before and during work, as I constantly feared for my safety. This was no longer a matter of pain; it was life and death. I had to request disability accommodations.

Fragrance sensitivity is a difficult disability to accommodate, because it often relies on the voluntary cooperation of others. My employer tried to enforce a scent-free policy in our open office, but a few individuals continued to apply fragrance in the office, as if my life didn’t matter. After months of deliberation and a few emergency room visits, I was moved to an enclosed office on a different floor. My employer added an air purifier and sealed the air vents. I keep the door shut and rarely have visitors. The bathroom closest to my office is designated scent-free, but sometimes I still have to dodge plumes of perfume in the hallway and wear my Vogmask. At this point, I know which people to avoid.

On Wednesdays, I work from home. ADA does not require employers to allow telecommuting, and my employer resisted this accommodation request at first. I needed to prove it was a reasonable accommodation–that I could still do my job for home. My medical documentation explained working from home reduces my exposure to triggers, and conserves my physical energy. I have since disapproved my employer’s fears and demonstrated how working from home can decrease sick days.

Sancho, my service dog, accompanies me to work every day. Under ADA, a service animal is defined as a dog that has been individually trained to do work or perform tasks for an individual with a disability. Sancho alerts and responds to my mast cell reactions. I am safer with a service dog, especially since I am alone in my office. ADA also allows Sancho to accompany me in other public places, such as the hospital.

One of the unexpected benefits of having a service dog is visually reminding people that I am disabled. When my coworkers see Sancho’s vest, they are reminded I react to fragrances and have other invisible disabilities. Plus, people smile at me a lot more.

Finally, I fall down stairs. Vertigo, low blood pressure, and muscle weakness make me susceptible to gravity. Even if I manage not to fall, stairs can trigger mast cell reactions that last several hours. So, I avoid stairs with help of ADA-required elevators.

Disability is a non-negotiable part of my identity. When I say I am disabled, I simply mean I need accommodations to be able to function. I had to fight hard for these accommodations. They weren’t just given to me. I was met with skepticism and inflexibility. My doctor filled out loads of paperwork and I sat in countless meetings. So I don’t have much tolerance for people who get uncomfortable when I say I am disabled. Nobody wants to be disabled, but I am proud of my self advocacy. I proud to be redefining disability and accessibility.

Even though I read laws for a living, I wasn’t very familiar with ADA before I got sick, because I never imagined I would benefit from ADA. I never imagined I’d become permanently disabled. No one does.

Now I understand how critical ADA is for people with disabilities. Without ADA, I would lose my job, my health care, and eventually my home. I would get sicker and require more health care, but it would be harder to access. I am benefiting from decades of advocacy from the disability community. I am proud to be part of this community and hope I can make positive contributions as I continue to learn what it means to be disabled.

A recap how ADA helps me every day:

  • Parking
  • Workplace accommodations
    • Working from home
    • Scent-free, temperature-controlled office
    • Scent-free bathroom
  • Service dog
  • Elevators

 I also use FMLA leave intermittently. This is separate from ADA accommodations.

(Photo by Paul Battaglia.)

Reading is my therapy

I have no money. Initially, when I was diagnosed, my bank account grew. My mast cells reacted to everything: shopping, eating out, socializing, eating in. My sole hobby became staying alive in the security of my own home. Gone were the days of Target receipts as long as my arm.

However, soon enough cocktails at happy hour were replaced with IVs in the emergency room, costing me a couple hundred dollars a month despite insurance. Add in a few hospitalizations and pharmacy bills, and I’ve been teetering on the edge of financial ruin ever since. I’d donate blood to help pay off my debt, but of course, no one wants my mutant blood.

Anyway, while my world and bank account shrank, I sought solace in library books. My local library is one of the ten buildings I can enter safely without a mast cell reaction. It has high ceilings and good airflow, but the best part is minimal social interaction! I can peacefully check out my reserved books without having to talk to or smell anyone. (I think my disease might have turned me into an introvert.)

At first, it was hard to find a book I could enjoy. In addition to brain fog, all I could think about was my pain and fears. When I was able to concentrate, I couldn’t relate to most characters. The stakes mocked my real-life struggles. Every happy ending seemed suspicious.

One day, I picked up Behind the Beautiful Forevers by Katherine Boo. It’s a nonfiction book about the daily life and struggle to survive in a slum near Mumbai. The story is a series of horrors: poverty, heat, hunger, and violence, to name a few.

For the first few chapters, I tried relate in the only way I knew how. I imagined myself living in the slum and counted how many pages into each scene until I would inevitably die from mast cell disease. I died a lot.

I began to think about the book when I wasn’t even reading it. In the bathroom, I thought about pooping without a toilet. At night, I thought about sleeping on trash. In the morning, I thought, “If that child gets up every day to scavenge for garbage in sewage, then you can get up and take your pills.”

It was exactly the therapy I needed. This book changed my life, not because it reminded me to be grateful or that others have it worse, but because it unlocked my empathy. It stunned me into thinking about someone other than myself. I realized my grief and anxiety had driven me to self-absorption and I embraced it under the guise of self-preservation. It felt good to leave my body for a few minutes and imagine I was somewhere else, someone else.

Since then, I have regained my love of reading and acquired new problems. I’m constantly browsing the internet for new book releases and placing holds before my library even receives the copies. I obsessively check the statuses of my requests, trying to calculate whether the ebook will become available before the hard copy. Without fail, several holds usually become available all at once and I have self-induced anxiety trying to figure out how to read them all before the due date.

I prefer ebooks, especially in the winter, because I still struggle to get to the library. Hard covers often trigger my tendonitis. I love my fourth generation Kindle, which I regularly stuff into a Ziploc for Epsom salt baths. Sometimes when I’m having anxiety about due dates, I turn my Kindle onto airplane mode and hold an ebook hostage.

But then I have anxiety that an angry librarian will show up at my door. It’s totally unrealistic, but I let the ebook go.

Although treating prostaglandins has helped my brain fog, I can’t always concentrate. In the hospital, I managed to downloaded a free trial of Audible high on pain medication. I don’t remember the book title, let alone the plot; sometimes the goal is just to relax. For moderate brain fog, I recommend young adult and comic books.

Here are some books I enjoyed in the months after my diagnosis:

Easy to read

  • Miss Peregrine’s Home for Peculiar Children by Ransom Riggs
  • The Graveyard Book by Neil Gaiman
  • Heart and Brain: Gut Instincts by Nick Seluk
  • Adulthood is a Myth by Sarah Andersen

Humor

  • Furiously Happy by Jenny Lawson
  • I Feel Bad About My Neck by Nora Ephron
  • Dress Your Family in Corduroy and Denim by David Sedaris

Calming

  • O’s Little Book of Happiness
  • Why I Wake Early by Mary Oliver

 

Which books have helped you through a hard time?

Fake news

Imagine being limited to 10 buildings for the rest of your life.

Because of my severe reactions to fragrances and other odors, I can’t go to shopping malls or movie theaters. No concerts, bars, or sport events. I’m afraid to take vacations, because the last two out of three times I ended up hospitalized. Aside from the days I’m pumped full of prednisone, my life is contained to about 10 buildings I can safely breathe in.

For me, the hardest loss is eating out. I hate cooking and I miss socializing with friends. My diet is so restricted (low histamine, low FODMAP, and soy free) that even if I could breathe inside a restaurant, I wouldn’t be able to eat or drink anything. I can’t even drink the water.

Well, there is one exception: an allergy-friendly, burger joint with high-quality ingredients, disability parking, high ceilings, and good airflow. Although I have to premedicate and I still have mild reactions, I enjoy a juicy cheeseburger on special occasions.

Recently, I scheduled an office lunch at the restaurant to celebrate our interns. Although I certainly didn’t have to, I like to regularly remind everyone I am an excellent boss and a charming coworker. Food has way of connecting people, unlike my plastic-wrapped, HEPA filtered office with no windows and a locked door.

I snagged a corner seat at the end of a long table for maximum airflow. My service dog curled up underneath, while I popped a Benadryl and set my Fiji Water on a coaster. My coworkers and I ordered our food and began our pleasantries. I rarely see my coworkers ever since HR put me in solitary confinement. Still it’s really hard to give a shit about polite conversation when you’re constantly facing life-threatening situations. It’s even harder to offer relatable conversation when your personal life consists of Facebook, poodles, and texts from your neighbor checking if you’re alive.

My head bobbed as a tried to find a smooth entry into the conversation, like a game of Double Dutch. Don’t mention anything medical, especially not your CSF leak. Lately, everything seems unequivocally related to CSF leaks. “That sounds so fun. I’d love to try that… but my brain might hemorrhage out my ear!”

My focus was interrupted by a man approaching the end of table. He knelt down and began assembling a tripod. When he stood up again, I recognized him as a local reporter. My curiosity was interrupted as the waitress thrust a plump burger oozing with cheese in front of me. I grabbed the steaming tower of beef with both hands and inhaled the greasy goodness.

“Oh my god, why are they filming us?” a coworker exclaimed. Sure enough, the reporter was now hidden behind a lens pointed directly down the center of our table. My coworkers squirmed, trying to hide their faces, while sneaking bites of beef.

I snickered at their self-consciousness. I don’t worry about looking good anymore. Prednisone cured me of my vanity. I’m too busy convincing people of my disabilities, so I can get help. I’m constantly reminding everyone that I rarely leave the house and struggle with simple errands like oil changes and phone repairs.

In fact, I generally look pretty good considering how I feel. Here I was wearing a dress, flaunting perfect curls, and eating lunch with seven other people. Aside from the poodle hidden under the table, no one could tell I was disabled. Let the paparazzi get their shots.

I figured the reporter was collecting some b-roll for its evening newscast. Some friends and family would probably see it. They would be proud of me for appearing in public like a normal human being.

Or would they.

I turned my face away from the camera.

What if they see this and think I’m a liar? What if they suspect I eat restaurant food all time? What if they think these people are my friends and I’m having a great time? What if they think I lied about everything and no one ever wants to help me again?

I finished my burger, hoping it would push the paranoia out of my stomach. Instead, my nausea grew as I drove my coworkers back the office, a typical post-meal histamine reaction. I left work early that day due burger-induced cramps and fatigue. I spent the evening curled on my couch, waiting for the news, and preparing my rebuttal.