I’m allergic to exercise

I finally went to the gym!

…in order to cancel my membership…

…for the sake of my health.

“Can I help you?” the manager asked.

“I want to cancel my membership,” I said. Please don’t ask why! I know you have to ask why, but please don’t. I just want to have a normal human interaction for once.

“What’s the reason for canceling?” he asked.

“Health issues,” I said. Go me! That’s what normal people would have said. Brief, sufficient, no oversharing. Maybe I have a future in subtly after all!

“Well, there is the option to freeze you account if you would like…”he said.

“I am allergic to exercise,” I interrupted and then gave him my serious face. No, buddy, this is not a punch line.

“Like actually allergic?” he asked.

“Yep, I’ve got my Epi Pen right here, “ I said, patting my purse, ready to whip it out à la Annie Oakley at the first sign of disbelief.

“I guess I know someone who is allergic to water,” he said or asked. I’m not sure.

“Yep, allergic to that too. I can only drink Fiji water,” I said. He tapped on his computer and I squirmed from the self-inflicted awkward silence. “I mean I do try to exercise. I just can’t do this stuff. There’s like a sweet spot of adrenaline ­– about 30 seconds. I can only run for a minute or two.”

“I guess I should feel lucky I’m just allergic nuts,” he said.

“Yep.” Okay, he kind of gets it.

***

I hadn’t gone to the gym in two years, but I clung to my membership and the belief that one day I could return. Because an allergy to exercise sounds like the greatest excuse, right?

The truth is I can barely even get to the gym. Most weeks, I struggle to get to the grocery store because I’m allergic to the weather (sun, humidity, cold, pollen) or I don’t have any energy left. Some weeks, I am nursing injuries related to my hypermobility. If the journey to the gym isn’t exhausting enough, once I’m there, I risk exposure to fragrances, cleaning chemicals, and germs.

When I exercise too much, bad things happen. Simultaneously, I need to lay down, puke, and poop. I struggle to breathe and think, while my organs continue to burn, swell, and spasm. And you thought your workout was hard.

The benefits of regular exercise do not outweigh the consequences of a mast cell reaction. Sometimes my reaction lasts for days, affecting my ability to do basic activities like eat or work.

However, I’ve found ways to exercise at home in small doses when I am feeling up to it. Any exercise starts with Benadryl (in addition to the eight antihistamine pills I take daily). I stretch gently, walk on my treadmill, lift light weights, or run for a couple minutes. I also have two toy poodles that are pretty demanding. Some days going to work, taking care of my dogs, and making meals is a workout in itself.

Breaking up with my gym was hard, but necessary. They say you’re supposed to work on your revenge body after a break up. I’m guessing that doesn’t apply here.

I survived the salt cave

When my friend invited me to the salt cave, I was excited. Retrospectively, I’ve realized that’s because I was on oxycodone.

On the day of the event, I contemplated skipping it. I am not a woo woo person, but I am trying to be more positive (without the help of narcotics, which I should mention I was only taking for my epic flare). I thought, okay I’ll show up for the nap.

My biggest concern was that someone would fart in the tiny room and I would giggle or gag. My second biggest concern was that I would die from a mast cell reaction. In that order. Because some farts are more miserable than death.

The staff had assured me the salt cave was scent free, but when I walked into the waiting room I was assaulted by a pungent smell. My friend sprang to greet me and, after a year of not seeing her, I replied, “Hi, I might die.” I sat in a corner and focused on breathing deeply, until I realized my throat wasn’t swelling and mast cells didn’t care about the salty smell.

Just as I was starting to calm down, we were ushered into “the cave,” a small room dimly lit by salt lamps. The pink and yellow glow illuminated the walls plastered in white salt. Some sections were stacked with salt bricks, others seemingly dripped down the walls. Everyone trampled across the salt covered floor as if it were a gravel playground. Suddenly, the taste of salt hit me, the door to the room slammed shut, and I panicked.

I wasn’t aware that salt therapy involves aerosoling salt, but suddenly I was anxious for air. To be clear, I’m not claustrophobic. I can enjoy an MRI (not the one that requires a full bladder), but a small room of strange people and substances is terrifying if you have mast cell disease. Again, I signed up when I was on narcotics.

I committed to sitting, refusing to lay down like everyone else, in order to be vigilant. I had a moment of regret when I realized the salt floor was heated, and likely felt like a beach vacation when laying down. But then the singing bowls started.

As it turns out, I didn’t just sign up for the salt cave, but also a “sound bath”. A woman sat cross-legged in the middle of the room and began tapping on three large bowls. Unfortunately, singing bowls remind me of air raid sirens and the book, 1984. I was sort of hoping the vibrations might disturb my mast cells and then I would have avoid my singing bowl allergy for life. But they didn’t, so I resorted to trying to relax.

As the ringing ebbed and flowed, I envisioned myself riding a roller coaster, swooping in circles and losing momentum just to drop again. Like one of those roller coasters that you realize it not so scary and a little fun, but you still want to get off as soon as possible. I don’t like rollercoasters either. So I diverted my attention from the singing bowls.

I looked around the hazy room. I tried to imagine being on a beach. I would definitely be drinking something fancy. I missed being able to drink alcohol. I wondered how many margaritas I could make with all of this salt.

I realized I’m probably not allergic to salt. My favorite kind of chocolate is sprinkled in visible granules of salt. And I remembered the first time I tried salt on watermelon. So good.

I missed normal yoga classes, in which the biggest threat was losing balance. I wondered if I was subconsciously punishing myself. Why couldn’t I just take a normal meditation class? I promised myself I would sign up for a normal meditation class.

Eventually, the bowls stopped humming and they let me out. I hugged my friend. She thought it was because I was grateful for the experience. Mainly, I was just happy to be alive.

In sum, I didn’t die and all farts were masked by salt. I’m actually stunned I didn’t react at all. The next day, I noticed my eczema wasn’t searing anymore. Apparently, salt therapy can do wonders for allergies and asthma, but I’m unwilling to further test that claim.

New experiences are emotionally exhausting when you have a chronic illness, but I’m glad I went.

When things fall apart and you want to throw things

Last week, I picked up When Things Fall Apart by Pema Chöndrön, because things fell apart during my recent flare. Namely, my false sense of security.

Over the last year, I’ve rebuilt my life to accommodate MCAS and avoid triggers. My steady progress boosted my confidence in my ability to manage this disease. I thought I had woven my own safety net with a series of daily precautions.

But this last major reaction sliced that safety net in half and I plummeted without knowing how far I would fall. Overnight, I lost my ability to work, eat, or sleep. I reached for help but the hospital wasn’t safe and the emergency doctors were reluctant to do anything for fear it would make me worse. No one, not even one of the world’s leading MCAS specialists, could tell me for certain what was happening or how to fix it.

I was terrified.

So I read  When Things Fall Apart in search of peace. I found comfort in Pema’s wise words, but the funny thing is I don’t remember any of them. The only thing I distinctly remember is that she threw a rock at her husband when he told her he was having an affair and he wanted a divorce.

I never scored well on reading comprehension.

Upon further reflection, I realized that’s how I felt when I lost my sense of security. I wanted to throw things too. Specifically, I wanted to whip a full set of ceramic dinner plates against a wall like frisbees. The pain was too much, the situation was too scary, and I wanted to protest its unfairness.

I think I’m supposed to just acknowledge these feelings. However, I’m still holding out for a box of plates and a sturdy wall. My second takeaway from the book is I think I’m still eligible to become a Buddhist nun.

I probably should re-read the book.

I’m flaring like pants in the 70s

Sorry I’ve neglected you, reader. I’ve been very sick, because nobody warned me about the noxious tar fumes at work. For the last two weeks, I’ve been fainting, puking, rocking myself in the fetal position, and praying the following:

Dear God,

Please let me sleep through the night without pain or pain-induced nightmares about becoming the hobbit or a pregnant war bride.

Please don’t let my coworkers kill me.

Thank you for helping my dog not to shit all over my condo while I was in the hospital.

And thank you for oxy and Lily Tomlin.

Amen.

I haven’t forgotten you, reader, but I’ve learned I’m pretty rotten to be around when I’m in pain. This is the most inspiring post I could muster. Although I only used one swear, which happens to be biologically accurate. I must be getting better.

Perfume is the new cigarette smoke

It’s National Fragrance Day. I can’t think of a stupider occasion.

Conversely, it’s World Poetry Day. So, I wrote a poem.

Your smell

Makes me swell

And feel like

I’m burning in hell.

To be honest, I used to scoff at others’ fragrance sensitivities. I thought people complained because they didn’t like a particular smell. I didn’t understand it was a medical issue with serious consequences.

Here are few of my MCAS symptoms that are triggered just from 10 seconds of exposure:

  • Throat swelling: feels like someone is choking your neck
  • Nausea, diarrhea, and cramping: feels like food poisoning
  • Liver swelling: feels like being punched in the stomach
  • Hives: feels like mosquito bites on top of sunburn
  • Tachycardia: feels like running a marathon you never trained for

Recently, Dior came out with a perfume campaign that I can support. It’s called Poison Girl. In the commercial, a woman with no pants crawls across the screen and says, “I am not a girl; I am poison.” Yazzzz, that is what you are! But poison is not sexy.

I truly believe perfume is the new cigarette smoke. Our grandkids will think we were idiots for polluting our lungs with chemicals and destroying our immune systems. I predict over the next few decades legislation will ban fragrances in public places. In the meantime, stay the hell away from me, poison girl.

Rare and cheesy like a burger

Did you know February 28 was Rare Disease Day? I assume you did, because you read my awesome post on The Mighty.

Last year, Rare Disease Day was like my coming out as a chronically ill, disabled person. I announced to my friends and family, “I’ve been sick my whole life; I just didn’t know it!” They were suspicious and confused. A few responded, “But you look good!” And I was like, “That picture is 15 months old and since then I’ve gained 40 pounds from prednisone.” Then I posted an updated picture and some people unfriended me, because rashes aren’t cute.

This year, Rare Disease Day was a milestone. I celebrated by eating a cheeseburger, because I was hungry and beef can be rare too. Except I requested mine be well-done, because my life is exciting enough without E. coli.

I’m sorry if you are vegetarian or vegan and this offends you. I’m just trying to survive. I cannot eat one piece of lettuce without suffering 12 hours of knife-like abdominal pain. My soy intolerance also severely limits my animal-friendly options. But yes, I can digest a cheeseburger (fresh and grass-fed, of course). It’s kind of like being allergic to the smell of soap, but not body odor?

I’m not complaining. Rare disease has taught me to appreciate that I can eat food, however limited. So I savor cheeseburgers. Sometimes on a weekly basis. It’s okay; I’m not on prednisone anymore.

Third grade Valentine’s Day lessons

My best Valentine’s Day memories are not romantic. In fact, my fondest memory was the result of a lot of puke. In third grade, I woke up with the flu on Valentine’s Day. I tried to get ready for school anyway, determined to pass out the valentines I painstakingly crafted the night before, but I vomit-blasted the hallway with such ferocity that I quickly retreated back to bed. All day, I lay in bed, brokenhearted and feverish, with only an empty bucket to console me. (Okay, I’m pretty sure my mom was around too, but we remember what we feel, even if it is a little dramatic.) My valentine mailbox, a shoebox covered in construction paper, sat empty on my dresser.

That day I learned:

  • How to control vomit
  • Sometimes illness forces you to stay home, no matter what day it is
  • Valentine’s Day sucks when you’re all alone

Then, at 3:30, the doorbell rang. I heard my mom invite the visitor inside. A few seconds later, my bedroom door opened. My third grade teacher entered the room.

“AHHHHH, she in my house!” I thought, sitting in my pajamas, but feeling completely naked. “She is breaking the rules! How did she find me?”

“I brought you this,” she said, handing me a shoebox covered with red and pink hearts. “I hope you feel better soon.”

After she left and I recovered from the realization that teachers can leave school, I opened the box. Inside were 22 handcrafted valentines from my classmates, and one from my teacher.

I wish you a healthy Valentine’s Day, full of thoughtful surprises. And if that’s not possible, please don’t wait for your third grade teacher to show up at your door. Sometimes self-care is the best valentine of all.