Oversharing

My best friend was coming over to spend the night for the first time. I could barely sit still while my right foot soaked in a bucket of warm water before she arrived. I had slept over at her house many times, but she had been too afraid to sleep at mine. Her fear baffled me. We just had conquered first grade and she had played happily at my house for countless hours. Besides, the best part of a sleepover is escaping your parents and their rules!

My mom, sitting in a chair across from me, picked up my right foot, wiped it with a towel, and set it on her knee for our nightly ritual. A plantar wart had taken root in the center of my heel–evidence of a summer well-spent at the local pool. My mom assured me the wart wouldn’t hurt me, although as she scraped away the dead skin, I questioned her intentions and kicked her a few times. Afterwards, I admired the progress of the wart’s eviction–my tiny science experiment.

This night, however, the wart surrendered, releasing from my foot and dropping into the bucket of water below. My mom and I cheered. “I want to see it!” I begged, eager to size up the enemy. To my surprise, the wart floated like a tiny jellyfish with long, translucent tentacles swaying in the water. I assessed the damaged to my foot–a deep, yet, smooth, red crater.

“You cannot mention this tonight,” my mom warned. “You’ll freak her out.”

I had briefly forgotten about my long-anticipated sleepover. I imagined my friend’s overreaction, the horror in her eyes. “Duh,” I told my mom.

When my friend arrived, I raced to show her all the cool things in my house. Or least the most interesting things and tried to make them sound cool. After about an hour, I ran out of ideas. I sensed her boredom; she sensed my desperation. I closed my bedroom door and asked, “Wanna see my foot?”

I whipped off my sock and presented my heel. She didn’t scream or gasp. She stared as I told her everything my mom had taught me about warts. I assured her that it was no longer contagious. I studied her face. She seemed curious, not frightened. I put my sock back on to reassure her, just in case.

Later that night, when I was brushing my teeth, I heard my friend talking to my mom in the kitchen. I heard the phone be lifted from its receiver. My mom appeared in the bathroom doorway. “I told you not to talk about your foot!” she scolded me.

Fifteen minutes later, my friend’s mom came to pick her.

*****

So, the main reason I created this blog was because my Facebook friends couldn’t handle my oversharing. Turns out everyone wants to be your Facebook friend until you post something boring, frightening, or disgusting. Well, I’m not boring.

Chronic illness has increased what I like to call my “generous honesty”. Life is too short for small talk and I left all my shame in an ambulance in Florida. I have never sugarcoated my illness and if you ask me what I did last weekend, I am going to tell you which body part broke.

I share my experiences on social media for many reasons:

  1. I live in solitary confinement and poodles are bad listeners
  2. Sometimes I need validation that my disease is total shit and I am a badass
  3. Therapy is expensive and my last therapist quit the profession, which is way more insulting being unfriended on Facebook

But most importantly, my posts help people. Yes, my stories are terrifying and sometimes disgusting, but everyone has body that is probably going to do some scary shit before inevitably falling apart. I feel a duty to normalize illness and disability, because for every ten people who unfriend me, one person privately messages me and thanks me for sharing my experience.

*****

The next summer, shortly after graduating from second grade, the phone rang. “It’s for you,” my mom said.

“Hello?” I answered.

My friend softly stuttered on the other end. She said, “I have wart on my foot, and my mom and I were wondering how you got rid of yours.”

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.)

I walk circles around the hospital

Everyone warns you that prednisone will make you fat, and when it does make you fat, they remind you that prednisone made you fat. Meanwhile, you’re just trying to stay alive. In 2015, before I was diagnosed, I became dependent on daily prednisone to control my symptoms and allow me to keep working. My weight gain did not frighten me; it seemed like a reasonable side effect in exchange for keeping my job, health care, and sanity.

However, no one warned me prednisone can cause muscle wasting. Contrary to popular belief, prednisone will not turn you into The Incredible Hulk. While it may incite bouts of rage, long-term use will actually convert you in A Blubbering Blob that has to ask grandma for help standing up. My arms became swollen noodles unable to compensate for my collapsing legs. I relied on my toy poodle to pick up items on the floor. (Note: get a bigger dog.)

Although I stopped daily prednisone four years ago, my muscles still haven’t fully recovered. To be honest, physical therapy hasn’t been a priority. I’ve been preoccupied with breathing and eating. Also, between MCAS and EDS, physical therapy can do more harm than good. Even well-intentioned specialists can cause injuries with life-altering consequences (e.g. CSF leaks). On the other hand, strengthening muscles can help stabilize joints and reduce injuries.

I have been walking a lot more lately though. Not because I want to rehab my muscles, but because I want to rehab my poodle’s muscles. Last fall, he injured his shoulder tendons and he had to wear a brace all winter. Now, his physical therapist has prescribed strength training, including daily walks.

Yes, I prioritize my dog’s physical therapy over my own. First of all, I still trust veterinarians; they understand my health issues better than most of my doctors. Second, my dog loves physical therapy. Maybe I would be more enthusiastic if someone fed me bacon or peanut butter every I lifted a leg.

Walking is my safest form of exercise, but it’s still difficult and exhausting. I worry about getting dizzy and passing out. I worry about getting stung by a bee and needing an ambulance. I worry about subluxing my hip or knee in the middle of my walk, and struggling to make it back. So, I walk circles around the hospital.

Trust me, it’s not as weird as it sounds.

I live next door to a hospital.

Okay, that part is slightly weird. I prefer to call it serendipitous. I bought my condo years before my MCAS diagnosis and subsequent emergency room visits. It is super convenient and it allows me avoid one of my greatest fears, asking for help. I just hobble over with my swollen throat, kidney stone, or spinal fluid leak. I never worry about my safety, even though passing out along the way is always possible. (I have considered a go kart.) Between the smokers, security guards, shift changes, and constant stream of ambulances, I know wouldn’t be left unattended for long.

Which leads me to my latest hobby: walking circles around the hospital. Sure, it’s no nature reserve, but I don’t worry about dying. Do you know what’s more soothing than chirping birds? The screaming sirens of ambulances rushing to save lives.

The sidewalk loops around the building for a perfect half-mile roundtrip. My poodle bounces along my side, putting much-needed smiles on visitors’ faces. Sometimes I consider waving through the window to the staff at the front desk, and shouting, “Hi neighbor! May I borrow a cup of Benadryl?”

My scale says I’ve gained a couple pounds this week. I hope it means I’m finally building muscle, not packing macaroni. I don’t need a bikini body, I just don’t want a weenie body, if I can help it.

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.