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.

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.

Why I made an encouragement board instead of a vision board

Every January, I make a vision board. To be honest, I enjoy the craft portion of the project most. A vision board is basically a pretentious collage that makes me sound like I have my shit together. It’s supposed to convey your dreams and leverage the law of attraction to make them happen. Yet, I never put a hospital on my vision board, but I can’t seem to stay out of one.

This year I am forgoing the traditional vision board for three reasons:

1. I am overly ambitious; my body is not

Before vision boards, I wrote resolutions. For example, here are my New Year’s resolutions from when I was 15 years old:

  • No chocolate except for special occasions
  • Find a volunteer job
  • Fix my many social problems or just shut up when necessary
  • Save $150 a month
  • Journal 3 times a week
  • Keep my face clear
  • Do all the other stuff I can’t think of right now

Well, that pretty much covers it. I was not a cool 15-year-old and I did not get more reasonable about my goals with age. I still eat chocolate every day and my face is usually dotted with hives. Let’s not even discuss the social problems. For the record, I did get the volunteer job… AT A HOSPITAL. These days I’m lucky if I can even keep my paying job. Vision boards and resolutions alike are loaded with guilt and regret.

2. The universe misinterprets my visions

In case you missed it, read last year’s warning about vision boards.

3. My friend refused to participate in our vision board tradition this year

Technically, we’ve only made them together once, but since my mast cells forbid all of my other traditions, it’s officially our thing. Maybe she refused this year because last year she was a little too scissor-happy with the yoga magazines and now feels guilty. Or maybe it’s because when we craft, I try to work “modge podge” and “she shed” into the conversation every 10 minutes, because I think it’s hilarious. She reminds me it’s actually called “mod podge” and I become more persistent. MODGE PODGE.

*****

This year, I decided I am making an encouragement board instead. Yes, that does sound even more nauseating than a vision board. Yes, a unvision board would be way more fun to make. (A unvision board is a collage of things you wish you could unsee. Yes, I totally made that up.) But after another year of pursuing the same dreams, getting knocked down and beat up, and feeling totally out of control, I need an encouragement board.

This past year, my friends and readers have kept me going. When I was in the hospital, your encouragement gave me strength to keep fighting and hope that I would recover. Oftentimes, I didn’t feel like writing, but the messages of support reminded me my writing helps people laugh and feel less alone. I dug up these messages time and time again when I felt low. Finally, it occurred to me to print these messages and make a collage.

Here’s what else my encouragement board entails:

  • A 11”x14” foam board
  • Scrapbook paper for the background
  • Inspirational quotes
  • Magazine clippings
  • MODGE PODGE (use doubled sided tape if you react)

Chances are you don’t have a blog and dozens of comments feeding your ego. However, I bet if you shared your dreams on social media, you’d also receive encouragement. Maybe from people you didn’t expect. And you can always print this out:

I BELIEVE IN YOU! YOU ARE AWESOME! – Hell’s Bells and Mast Cells

The Christmas cards are stacked against me

I’m not feeling the holiday spirit this year. Maybe it’s because the hospital almost killed me last month and still gifted me a $2k bill. Maybe it’s because my head is a ticking CSF leak time bomb and my neurologist says I will probably need brain surgery. Maybe it’s because my right kidney is still angry from last month’s contrast dye and throws a tantrum every time I drink water.

Or maybe it’s because Shutterfly sent me envelopes that smell like butt.

For the past decade, I’ve sent at least 50 Christmas cards each year. In the hospital, I swore I was taking this year off. However, a week later, I was invited to participate in a holiday card exchange for people with mast cell disease. I’m a sucker for fellow MCAS warriors, so I loaded up on steroids, put sweaters on my dogs, and trekked outside in the snow. The photos were adorable, so I ended up ordering 50 cards per usual.

As soon as my cards arrived in the mail, I set up my workshop: pens, stickers, and stamps. I was admiring my new cards, when it hit me. Not a chemical smell, nor a poop smell, but a foul butt smell. I put an envelope to my nose, and one whiff confirmed these envelopes had been stored in a sweaty butt warehouse for the past year. Unfortunately, by the time I moved them outside, my lungs were burning.

The only thing worse than getting sick from your own Christmas cards is getting all your chronically ill friends sick from your Christmas cards. I want to be known in the MCAS community as a great blogger, not the Christmas card killer. Again, I have ordered cards for over a decade, and I’ve never had this problem. Why this year?

Not even the Minnesota winter air could refresh the butt envelopes sitting on my patio. I waited two weeks for Shutterfly to send replacement envelopes. In past years, I would have been more patient. However, as a chronically ill person, I cannot crank out cards like I used to. Everything takes longer.

I considered sending the butt envelopes to my friends and family without mast cell disease anyway. I could just add “This is what my 2018 smelled like. Merry Christmas!” However, I usually I can smell things normal people can’t. So, my message would probably add further confusion and evidence that I am the most awkward person in their life.

As the Christmas deadline grew near, the pressure to finish my cards and my crabbiness increased. I began publicly proclaiming everyone would be receiving scent free deodorant for Christmas, because I am sick of trying and suffocating.

I was at the precipice of a Grinch-like meltdown, when I began receiving cards in my mailbox. Half of the cards came from cities I’ve never heard of, homes of other mast cell warriors. One of the cards contained a sticker that read, “Thank you for being.”

My shrunken kidney, two centimeters too small, did not grow when I read that, but I did feel a moment of comfort. The holidays have become painful reminders that everything is difficult or impossible for me: shopping, decorating, eating; socializing. The sticker gently reminded me I still matter, even if I can’t send Christmas cards on time anymore.

I considered putting an end to my shopping stress by just giving everyone on my list one of these stickers for Christmas. Then they would probably wish I had given them scent free deodorant. Holiday expectations are ridiculous.

Texts from the hospital

I’m recovering from a five-day hospital stay for a CSF leak. After two weeks of agony, adrenaline, and vomiting, a neurologist ordered a blind blood patch, and luckily it worked. Luckily, it’s still working. However, the leak, the MRIs, and the dye really pissed off my mast cells. And two doctors refused to give me mast cell medications.

I feel like I’ve been to hell and back, and I need to rest before I process the trauma.

I checked into the emergency room alone, per usual. I am my own best advocate and I hate asking for help. However, I underestimated the sedating power of Diluadid, Ativan, and Benadryl. I remember trying to text a single word to a friend for several minutes before giving up. Another friend suggested I dictate my texts and I thought that was a brilliant idea. Then I promptly forgot that idea.

My Facebook posts quickly devolved from official updates into a stream of consciousness.

“I hope Sancho visits me.”

Sancho is my toy poodle service dog. Instead of asking for someone to get him for me, I simply hoped aloud Sancho would make that choice himself – as if Sancho drives himself to the hospital. Luckily, my friends brought him to the hospital soon after my post. He woke me up at 3 am, when I pulled my IV out in my sleep. So. Much. Blood.

“At least I have corner room now. I’ve been watching humans park add snow all day”

I think this was the point in which my friends realized I probably shouldn’t be alone. On the 7th floor, I could see a nearby ski hill making snow. I watched it for hours, my own personal snow globe. Nobody else seemed to think it was as wonderful as I did.

My friends made sure I had everything I needed, making several trips to my condo. They even let me think I was still being helpful and orchestrating the details via text message.

“Ok but my mekhjnkr will have just to let you in”

Amidst all the cognitive impairment, I managed to purchase an Audible subscription and download several audiobooks. However, I listen for one minute before realizing I could not concentrate on a whole sentence.

On the fourth day, I became really pissed.

“Kidney swelled shit and cutie wouldn’t believe me… almost left crying”

 I have a couple names for the doctor that refused to administer mast cell medications when my kidney went into hydronephrosis. Cutie is not one of them. And by “almost left crying,” I really meant threatened to rip out my IV and flee the hospital screaming.

Without a doubt, I would not have survived this hospital stay without my friends. Perhaps the cognitive impairment was the blessing I needed to accept help. My friends reminded me that we all deserve help and we all struggle with autocorrect.

“She’s been through a lot this afternoon. But they finally have things almost under control. Her murder is fantastic.”

I have a lot to process: a leaking brain sack, a shrinking kidney, and a health care system that failed me. But my murder is fantastic. I don’t know what that means, but somehow I am comforted.

Candy WAS dandy

“Are you sure you don’t want to come with us?” my mom asked, standing in my bedroom doorway, alongside a petite, but bloody vampire.

“Nah,” I said, barely looking up from my book. I was thirteen, officially too old to tour the neighborhood with my mom and little brother, and all of my friends had retired from trick-or-treating.

As soon I heard the door slam, I dropped my book and sprinted to the living room window. Behind the curtain, I watched them turn right at the end of the driveway and disappear into the darkness. The silence of the house filled me with anticipation.

Back in my bedroom, I changed my clothes: black leggings and a black sweatshirt. I ripped the pillowcase off my pillow, grabbed the cat mask I had dug out of storage a few hours earlier, and laced up my running shoes. I snuck out the front door, undetected by my dad. At the end of the driveway, I turned left and burst into a full sprint.

The purpose of Halloween is candy. It’s not about visiting with your neighbors, or spending time with your friends; it’s about collecting the most candy. That year, I decided I was going to collect the most candy ever. Goodbye pokey family and doorstep chitchats. My mask would give me the anonymity I needed to speed up my hustle. I did not walk door to door. I ran.

I ran like a thief in night. Literally. I took more than my fair share of those unattended bowls of candy left on doorsteps. I learned to time my approaches perfectly, sliding into other groups just as the homeowner opened their door and the kids held out their bags. I rarely had to press the doorbell and wait. Sometimes I didn’t even say trick-or-treat.

Only the weight of the pillowcase could stop me. I returned home cradling my 20-pound pillowcase in both arms. I dumped its contents on my bed, admired the assortment, and congratulated myself. I rewarded myself with my favorite kinds first, but it didn’t really matter. I was going to eat it all anyway. It was just a matter of time.

Thirty minutes later, my mom and brother returned home. When my mom opened my bedroom door to tell me how I had missed out, she found me grinning wickedly surrounded by wrappers.

******

Skittles were one of my favorite candies. Particularly the purple Skittles. I think I started buying them from the office vending machine to try to beat the afternoon slump. This was four years ago, when my digestive issues were beginning to get severe. I was avoiding dairy and soy, so Starbucks was no longer an option. I had cut out gluten, and was resorting to all fruit smoothies for lunch, but my gut and butt were still angry.

A bag of Skittles seemed harmless given my current state. At least it would help my mental health, I justified. I spread the tiny spheres out on my desk, admiring their bright colors, as if it would slow my consumption. As soon as they were gone, I wanted more. My coworker caught me with the second bag and warned me I was going to be sorry. Maybe, I said, but I was going to be happy first.

One hour later, the Skittles started punching me in the stomach. I continued to work at my desk, accepting my punishment and accustomed to digestive pain. Suddenly, a sharp, overwhelming urge rushed me to the bathroom. I pooped the entire rainbow for the next 30 minutes.

If you know me well, you know this did not discourage me. In fact, they next day, I ate two more bags of Skittles and again, pooped my guts out. I wasn’t surprised by my belly ache, but the ferocity of the Skittles shooting through my system was terrifying.

I googled my symptoms and discovered fructose intolerance. People with fructose intolerance can’t digest foods like corn syrup, which is in everything! I refused to believe I could no longer eat my beloved candy, so I keep eating the Skittles for a full week. I spent a lot of time in the bathroom that week.

Eventually, I realized not only were the Skittles making me sick, but my lunchtime smoothies too! I thought all fruit smoothies were the ultimate health food, but I was wrong. It turns out a lot of supposed healthy foods make me sick. Soon after, I discovered the low FODMAP diet and have stuck with it ever since. My hypothesis is mast cell disease destroyed my body’s ability to create many enzymes necessary for digestion.

Now I binge on corn syrup free jelly beans. Sometimes by the package. You can take the fructose out of the candy, but you can’t take the candy out of me.