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.

The soup that helps me survive winter

I have never enjoyed cooking food. Maybe it’s because most food hurts me. Maybe it’s because standing in the kitchen makes me dizzy and exhausted. Maybe it’s because during my first cooking lesson, my mother told me that my great grandmother died in a cooking fire.

However, my body demands home cooked meals. Soy, garlic, onion, corn syrup, lactose, and high-fiber foods make me feel like I’ve swallowed a demon. High histamine foods, basically all the remaining foods, make me puke within 20 minutes of ingestion. It’s easier to explain what I can eat: fresh, plain meat; potatoes; rice; bread; and butter.

This makes lunch at work incredibly difficult. I cannot breathe in restaurants, and there are no safe takeout foods. I cannot eat refrigerated food, which increases histamine, but frozen is okay.

My friend encouraged me to make soup, which sounded tasty. However, when I learned her recipe involves roasting a chicken and simmer the bones, I abandoned the idea. The only thing I roast are bad healthcare providers.

I don’t appreciate food enough to spend hours of my precious energy preparing it. I often remind myself that in the event of a zombie apocalypse I will die because I don’t know how to roast a squirrel. But let’s be honest, I probably can’t catch a squirrel and I’d probably die from running out of my medications first. I’d be lucky if I lived long enough for a zombie to eat me.

This year, when Minnesota’s windchill dropped to -50F, my body demanded soup. I scoured Whole Foods for a gastronomic compromise. To my delight, I discovered the nectar I’d been longing for: a chicken broth made without garlic or onions. From then on, it was surprisingly easy to develop low-energy soup recipes.

Here’s my recipe for chicken noodle soup:

  1. Think about making chicken noodle soup. Eat air sandwiches for lunch and sleep through dinner time until you are so hungry that you can’t feel your joint pain anymore.
  2. Eat cereal for energy to go to the store.
  3. Go to Whole Foods at 5 pm, because that’s when the rotisserie chickens are fresh. Buy one plain rotisserie chicken, celery, carrots, green onions, and 48 oz of 365 Everyday Value® Organic Chicken Broth. Pray that you still have basil, thyme, and pasta at home.
  4. Eat part of the chicken and take a nap.
  5. Maim the celery and carrots. I hate celery and carrots. They taste shit and aren’t going to cure me. But I eat them just in case.
  6. Sauté the vegetables in garlic oil if you feel fancy.
  7. Squirt the box of chicken broth into a pot over the vegetables, emulating the sights and sounds of colonoscopy prep. This is my favorite part.
  8. Dump basil, thyme, and pepper into the pot until it looks pretty and bring the broth to a boil.
  9. Add 2 cups of tri-color rotini because curls have more fun. Boil for 7 minutes.
  10. Remove from heat, add chopped chicken and green onions, and stir until you get tired or bored.
  11. Spoon into Pyrex bowls and freeze.
  12. Tell the poodles to do the dishes.

A letter to patient relations

This isn’t a funny post. This is an upsetting post. In fact, writing this letter made me so upset it took me three months to finish it.

I am not sharing this letter with you to make you upset nor for sympathy. I’m sharing it because I know my negative hospital experience isn’t unique, especially for mast cell disease patients. I’m sharing it to raise awareness of the incredible amount of advocacy required to receive adequate medical care for chronic illness. I’m sharing it in hopes that if this happens to you, this letter will encourage you to write one too. Even if it takes three months.

*****

To patient relations,

I am writing regarding my 11/9/2018 emergency room visit and hospitalization, as well as my emergency room visits on: 8/2/18, 8/13/18, and 11/6/18.

I have Mast Cell Activation Syndrome (MCAS) and Ehlers Danlos Syndrome (EDS). MCAS is an immunologic condition in which mast cells are easily triggered to activate throughout the body, which can cause a wide range of symptoms and complications, including anaphylaxis. EDS is a connective tissue disorder characterized by joint hypermobility, skin hyperextensibility, and tissue fragility.

On 7/18/18, I had a chiropractic adjustment to address joint subluxations due to EDS. The following day, I had a headache and inflammation of my right eustachian tube. Two days later, on 7/20/18, my right inner ear was full of fluid; however, my primary care doctor did not see any infection in my ear. The only change in my routine had been the chiropractic adjustment, and considering my connective tissue disorder and the fluid in just one ear, I was concerned I could be suffering from a spontaneous cerebrospinal fluid (CSF) leak.  CSF leaks are a complication of connective tissue disorders such as EDS, and include symptoms such as fluid in one ear and headaches. Furthermore, lying down alleviated my head pain, a classic sign of a CSF leak.

On 8/2/18, my head pain became unbearable and I went to the Fairview Southdale emergency room. My MRI was normal; however, I had persistent vomiting, pain, nausea, and dizziness when I sat up. The doctordid not contact a neurologist despite my request. I explained MRIs do not always show CSF leaks. He said, “It’s not possible to have a CSF leak without a trauma, like a car accident.”

On 8/13/18, I returned the emergency room due to neck pain and a MCAS reaction. Pain is a mast cell trigger and, in this case, my mast cell reaction was causing a mild fever, a sore throat, and vomiting. The doctor tested for strep (negative), but did not investigate my concern about a CSF leak, despite explanations of my symptoms and the link between EDS and CSF leaks. He also did not consult neurology, despite my request. I was discharged without any treatment plan.  Feeling defeated, I ended up treating my MCAS reaction at home with Benadryl.

For two weeks, I laid totally flat in bed hoping the leak would heal on its own. I experienced some improvement until October. On 10/31/18, I began experiencing increased head pain and fluid in my right ear once again. The pain was triggering vomiting and high blood pressure, and I was missing work.

On 11/6/2018, I returned to the emergency room because I was once again having a severe MCAS reaction from uncontrolled head pain. My lips were swelling and my right arm was going numb. I repeatedly asked the doctor to consult neurology. He finally consulted neurology by phone; she recommended IV caffeine. After receiving the IV caffeine, I could sit up for the first time without pain. I explained to the ER doctor how MRIs do not catch all CSF leaks and asked if we could do other imaging. In his notes, he wrote, “I spoke with Dr. S from neurology who relays there is a small chance of a CSF leak secondary to minor trauma.” Although my medical record states Dr. S examined me that night, she did not examine me either in person or on the phone. She only spoke to the ER doctor on the phone.

Also, in his notes, the ER doctor wrote, “I do believe there is an anxiety component.” Ativan is a mast cell stabilizer. When mast cells are not stabilized, histamine is released and histamine can cause anxiety. The ER doctor would not prescribe Ativan tablets to help me manage my MCAS reactions until I could see my PCP. Meanwhile, my head pain was increasing, and yet again, there was no plan provided to me for pain management or treatment of the suspected CSF leak – that is anxiety provoking in itself. Although CSF leaks themselves are not life-threatening, they can cause severe complications for individuals with MCAS. I was discharged and the pain returned almost as soon as I got home.

On 11/9/2018, three days later, I returned to the emergency room. My head pain was unbearable and continued to aggravate my mast cell disease (vomiting, high blood pressure, hives, swelling). A front desk nurse, not the one checking me in, said in an arrogant tone, “I remember you. You would be in a lot more pain if you had a CSF leak. Have you contacted neurology?”

I said yes and neurology told me to go to the emergency room. I had finally gotten an appointment with a CSF leak specialist, but the appointment was still a few days away.

The nurse scoffed and said, “Well they always say that.” She dismissed my pain before I had even finished checking myself into the ER.

Once admitted to ER, I agreed to do another MRI, even though I know MRIs are not the best tool for catching CSF leaks. Because of MCAS, I need to be premedicated for radiology procedure with and without dye. The ER doctor ordered the proper medication and doses as recommended by The Mastocytosis Society: IV prednisone, Benadryl, and Ativan. It was a two-hour MRI, so I made certain to go the bathroom next the radiology room right before the procedure. I explained to the tech that I have mast cell disease and can react to radiology procedures, although that has not happened to me with past MRIs and I had fully premedicated. I also gave her my Epi Pens in case of emergency. About ¾ of the way through the imaging, my bladder began to feel full and spasm. I am used to powering through medical procedures, but I began to feel like I was going to lose control of my bladder. Often times, when I have mast cell reactions, I have activation in my kidney and bladder, causing spasms and swelling. I realized I was reacting to the MRI and I needed to use the bathroom.

I squeezed the call button and said, “I’m really sorry. But I really need to use the bathroom.”

The tech replied, “We are almost done.”

I said, “No, I’m sorry. I can’t wait.” I waited for to be pulled out of the machine. Nothing. Just silence. I squeezed the call button again and I said, “I really need to go the bathroom now. I am having a reaction.”

The tech replied, “We haven’t done the contrast yet.”

I said, “I know, but I am still having a reaction.”

The tech replied, “We are almost done. If I stop now, we’ll have to start all over. The images will have to be redone. We really can’t stop now.”

I felt completely panicked, trapped, and unsafe. I said, “I really need to go now or I am going to pee all over the table.”

She finally let me out and as I ran to the bathroom, she bombarded me with inappropriate comments and questions saying “I don’t understand. You went to the bathroom before. Is there something you’re not telling me? Some condition you’re not telling me? Now we have to do it all over again. I don’t understand. There are other patients waiting.”

I kept repeating “I’m sorry” while trying not to cry.  She made me feel guilty for having to start all over again.

My MRI was normal. I begged the ER doctor not to discharge me, at least not without seeing a neurologist. He agreed to admit me for observation.

The hospitalist, Dr. N, came to my ER room to discuss my admission. I had a friend with me at that time. I explained I have MCAS and need to follow the emergency The Mastocytosis Society’s (TMS) protocol until the CSF leak is addressed, otherwise my mast cell reactions can become more severe and painful. Sensing Dr. N’s reluctance, I showed her the protocol printed from The Mastocytosis Society’s website (written by Dr. Mariana Castells).

Dr. N said she could not follow the TMS protocol because it was not signed. This is not consistent with past practices. Since I was diagnosed with MCAS at the University of Minnesota in 2015,  I have been treated many times and once admitted at Fairview Southdale; following the TMS protocol has never been an issue. I have attached the protocol I showed Dr. N, although I’m sure it is in my file. I told her how it was imperative that I receive mast cell medications and this protocol was the standard emergency protocol provided by the The Mastocyctosis Society. I also told her to look at my chart. She left and I was moved to the observation floor. Around 10 PM, I received IV Benadryl, Ativan, and Diluadid. My friend left shortly after, assuming I was receiving adequate care and medication.

I woke up about 6:30 am on 11/10/18 in pain and alone. I noticed on the whiteboard that I was due for both IV Benadryl and IV Diluadid.  The whiteboard listed “medications”, “last given” and “available at”. I called the nurse and asked for the Benadryl. The nurse gave me 25mg of Benadryl, but it did not resolve my pain, so I asked for the Diluadid. She said I no longer could have Diluadid or more Benadryl (50mg is standard protocol mast cell disease). I asked for an explanation or to talk to the doctor. I asked why the doctor stopped my medications without talking to me.

The nurse came back and told me the doctor ordered morphine and Tylenol. I told her I am allergic to morphine and Tylenol. I told her to look at my chart and to look at the protocol paper I brought that specifically indicates my reactions to morphine and Tylenol. I asked why I can’t have Diluadid when the whiteboard indicated I was due for my next dose. She said, “We don’t have those medications on this floor anymore.” I demanded to talk to a neurologist since I was there for a spontaneous CSF leak and was still waiting to talk to a neurologist since the previous afternoon.

At 9:48 am, I called patient relations. Shortly after, the neurologist, Dr. S, came to my room. This was the first time I was examined by a neurologist. Dr. S admitted me to the neurology floor and recommended me for a blind blood patch for a suspected cerebrospinal fluid leak. I told her, near tears, about Dr. N stopping my medication and she promised she would make sure I received IV Benadryl and IV Diluadid.

I am extremely concerned that Dr. N ordered medications that can give me life-threatening allergic reactions. Not only are my allergies listed in my chart, but I showed her a protocol indicating I react to both. She made this change after my support system left the hospital and without consulting with me.

Furthermore, I endured unnecessary pain, inflammation, and anxiety because Dr. N would not continue the medications given to me in the ER. She ordered one dose of each medication the night before around 10 pm, and then arbitrarily stopped the medication in the morning without any warning. Stopping pain medication arbitrarily while awaiting treatment for a CSF leak is cruel and inhumane. Refusing to treat mast cell disease is cruel, inhumane, and can become life-threatening.. Dr. N never came to talk to me about the changes she made to my medications, despite my repeated requests for her to do so.

Thanks to Dr. S, I continued to receive the correct medications until my blood patch procedure on 11/12/18. Before the procedure, I was premedicated with IV Benadryl and prednisone per TMS protocol. The radiology team that performed the blood patch was fantastic. They told me they treated a CSF leak in an EDS patient the previous week. The procedure went well. My epidural blood patch was less painful and stressful than my MRI. My head pain disappeared almost immediately. I have not felt the head pain I had been experiencing since the blood patch procedure.

About ten minutes after I was returned to my room on the neurology floor, I urgently needed to go to the bathroom. I peed about 5 times in 20 minutes into a bed pan and then I began having kidney, ureter, and bladder spasms. I realized I was having a severe MCAS reaction and my right ureter was swelling shut, as the pain stabbed me. I have a history of right kidney hydronephrosis with mast cell reactions, and was even hospitalized on 8/22/17 on the same hospital floor. I went from peaceful bedrest to level 10 pain in seconds. I would rather pass two more 5mm kidney stones than experience this pain again.

I yelled for the doctor and when Dr. B entered I cried for an epi drip explaining I was having a mast cell reaction to the procedure and my right kidney was going into hydronephrosis. Dr. B said he didn’t have epinephrine on that floor and suggested a CT and that perhaps the pain was due to kidney stones. I yelled no. Blood patches do not cause kidney stones. I thought he was crazy to think I could endure a CT with this pain, let alone waiting to get a CT. I begged him to look at my chart, the notes from my hospitalization on the same hospital floor for the same reaction, and the notes from my urologist. I begged him to hurry, because every minute damages my kidney without proper treatment. I cried, “My kidney is going to shrink” because it already has as a result of my MCAS reactions. My friend pushed the TMS protocol into his hands, as he ran out of the room visibly flustered.

The nurse stood by my bedside tried to console me, as I endured the pain. After having spent time with me, she understood I was in a reaction. I threatened to grab my own Epi Pen and leave the hospital. One should not sit up after a blood patch, but I would have rather had the head pain than another minute of hydronephrosis. My friend held my hand and restrained me as I sobbed. I hoped I would black out. About this time Patient Relations entered the room to discuss Dr. N. I’m not unsure if Patient Relations’ presence changed the doctors’ mind, but shortly after the nurse pushed IV Benadryl, Ativan, and Diluadid and within minutes I was comfortable again. Patient Relations attempted to discuss Dr. N with me, but I was too exhausted and medicated to hold a conversation.

I endured unnecessary pain and suffering because Dr.B chose not to believe me. It is further infuriating that my medical records do not contain an accurate description of this event. My medical record says, “RLQ pain occurred after the blood patch procedure… She declined further imaging and the patient’s symptoms spontaneously resolved.” That is a lie. I was given IV Benadryl, Ativan, and Diluadid, and only then did the pain resolve. There is no mention of my hydronephrosis or my history of hydronephrosis being treating with MCAS medications.

Additionally, I am extremely concerned about Dr. B stating that there was no epinephrine on the floor of the hospital. If that is true, that is terrifying. Epinephrine should always be easily accessible in the case of a mast cell patient, no matter the floor. Patients with mast cell disorders can experience anaphylaxis to a huge variety of triggers – including pain, physical trauma, scents, and medications – and having epinephrine available is a matter of life and death.

I was so upset from my hospitalization that I did not seek medical care when I began experiencing benzodiazepine withdrawal the night of my discharge. In the hospital, I had received IV Ativan every four hours for 4 days, and Dr. B discharged me without any Ativan tablets or warning about withdrawal.

For the past three years, I have gone to Fairview Southdale for emergency care for mast cell reactions since my diagnosis by the U of M in 2015. The ER doctors have always followed The Mastocytosis Society Protocol. As I previously mentioned, I was admitted for observation at Fairview Southdale for a severe mast cell reaction including hydronephrosis on 8/22/2017 and the doctors followed the The Mastocytosis Society emergency protocol. My chart clearly indicates my diagnosis, my medication allergies, and how to treat my reactions. Dr. N and Dr. B disregarded this information. During my visit, I had to beg to see a neurologist, to receive MCAS medications, and even to go the bathroom.

The blood patch resolved my head pain, indicating I was indeed suffering from CSF leak. Dr. S, the neurologist, wrote in her notes, “In up to 20-25% of patients MRI brain imaging may be normal.” I incurred additional medical bills because I was repeatedly not believed. If I had been admitted for observation just three days before, on my third emergency room visit, I could have seen a neurologist sooner, avoided another emergency room bill, avoided missed days of work, and avoided the cost of hospitalization over the weekend, since blind blood patches are scheduled on weekdays.

I would like the hospital to take the following actions:

  • Revise my medical record reflect my mast cell reaction to my blood patch procedure and responsiveness to IV MCAS medications
  • Address the actions of these four medical professionals: Dr. N, Dr. B, the check in nurse, and the radiology tech
  • Dismiss my hospital bill and medical records bill

Finally, you must ensure this will not happen again. Inevitably, I will go the ER again for another severe MCAS reaction, possibly hydronephrosis. I want assurance The Mastocytosis Society Protocol (now signed by my primary care doctor) will be followed. I want assurance that if I experience hydronephrosis from a MCAS reaction again, I will receive swift treatment and pain medication. I want assuranceepinephrine will always be readily available for mast cell patients. Finally, I want assurance your doctors will not dismiss mast cell disease, simply because they do not understand it.