3 tips for MCAS warriors

#1. Never underestimate your mast cells

Everyone has mast cells. Part of our immune system, mast cells keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.

However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.

#2. Do not ignore or argue with your mast cells

You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.

If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!

#3. When in doubt try Benadryl*

*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor.

BENADRYL IS MAGIC.

Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.

Vomiting, dizziness, IBS – Benadryl!

Muscle pain, bone pain, migraine – Benadryl!

Rage, anxiety, doom – yes, can you believe it?! Benadryl!

Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to histamine.

Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs. In fact, I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. However, Benadryl can be incredibly helpful in understanding mast cell disease.

When healing takes forever

Brain juice leaks are a real pain in the neck. Literally.

You know that feeling when you think you’ve recovered from an illness or injury, and then all of a sudden you projectile vomit? That’s how I felt two weeks ago when I stood up and realized my headache was gone. Hooray, no more bedrest! I leaped around my condo tackling all the things I hadn’t been able to do. Less than ten minutes later, a web of pain shot up my neck and into my skull. I paused, rolled my neck, yelped, and puked.

Although the CSF leak had healed, the injury severely strained the right side of my neck. Searing pain sent me back to bed. I cursed my luck – I can accept a sports injury, but a muscle strain while on bedrest?!

I know I should be grateful that I am healing, but honestly, I feel empty and trapped. I’ve mastered the Zen of kidney stones and anaphylaxis, but 38 days of pain and isolation are wearing on me.

Some people are graceful about pain and bedrest. Good for them. I turn into a monster. Constant pain induces desperation and bedrest invites me to ruminate about my mortality. Books and movies are temporary distractions at best. Nothing brings me joy, not even prednisone. I tried practicing gratitude, but acknowledging “at least I’m not a giraffe” did not make me feel better.

Over the last few years, I’ve learned three things about my shitty feelings:

  • Pain and mast cell reactions can induce shitty feelings.
  • Fighting shitty feelings is futile.
  • Shitty feelings are temporary.

I know this pain and these feelings will go away, even though it’s hard to be patient with recovery when I’ve already faced a shitstorm of health issues. So tonight, I will pop my muscle relaxant, wrap myself in a blanket, and embrace my shitty feelings.

“Simply be present with your own shifting energies and with the unpredictability of life as it unfolds.” – Pema Chödrön

“Acknowledge your shitty feelings when shitty things happen.” – Hell’s Bells and Mast Cells

P.S. Pain also makes me swear more. Not sorry. It’s a natural form of pain relief.

Brain juice is leaking out my ear

Day 23: I’m stranded on an island of pillows and sheets. I think the leak has stopped, but to be safe, I must stay here for a few more days.

While most Minnesotans are floating on lakes, here I lie on bedrest for a cerebrospinal fluid (CSF) leak that started last month.

Day 1: My right ear is taking on fluid. Just the one ear. No sneezing, no coughing, but maybe the start of a headache.

 Day 2: I pooped, then fainted. At least, I was able to pull able my pants before I fainted. I do not want to die like Elvis. 

Over the next two weeks, the pain at the base of my skull and behind my right ear became more severe, like someone had swung a bat at the back of my head. None of my mast cell medications provided relief. As an experienced medical detective, I retraced my steps and remembered, the day before my symptoms started, I had a chiropractic adjustment. The chiropractor had used her activator, a small metal device, on right side of my neck, just below my skull, the same spot as my headache.

My chiropractor specializes in Ehlers-Danlos syndrome (EDS), a connective tissue disorder associated with mast cell disease. Over the past year, I’ve experienced more joint subluxations and my chiropractor gentle guides my bones back in place. However, I know neck adjustments, even gentle ones, can be risky for EDS patients.

Day 13: I think my brain is leaking, I’m just not sure how to tell anyone.

Fully aware nobody likes a self-diagnosing patient, I emailed the facts to my primary care doctor without my hypothesis. She responded, “I have no recommendations at this time. Try more [mast cell medications].” At this point, the pain was causing me to vomit. I only felt relief after laying down. Classic symptoms of a CSF leak.

Day 14: The ER doctor is pretty sure I won’t die tonight. 

In ER, my doctor was concerned about a stroke or vascular dissection. When I suggested a CSF leak, he said that wasn’t a possibility, because I hadn’t experienced a head trauma. When I told him about my chiropractic adjustment and EDS, he paused and then left room, I think to Google. My MRI and bloodwork came back normal, and he sent me home. I really should have asked to see the neurologist on call.

Day 16: I yelled, “Brainjuice! Brainjuice! BRAINJUICE!” But the pain did not stop.

I instituted my own bedrest until I could see a neurologist. It’s not like I really had a choice. The ER doctor prescribed pain medication, but laying down was the most effective way to relieve the pain. My friends with EDS were also convinced I had a CSF leak, while the rest of the world considered I may be losing my sanity.

Day 21: The neurologist says I probably have a CSF leak.

The neurologist believes my CSF leak will heal on its own with more bedrest. It is nice to be validated, but mainly I am tired of enduring this medical circus. My healthy friends aren’t sure what to say, and neither am I. I’ve accepted becoming allergic to the sun, delicious food, and most people. But now if I poop too hard my brain may come through my ear? That’s where I draw the line, folks.

So, I’ll be in bed for the next few days, trying to focus on my gratitude for the Internet. The Internet that provides me with unlimited movies, TV shows, and books without having to lift my head. The Internet that allow me to share my jokes on social media, so I don’t have to laugh alone and continue to question my sanity. The Internet that provides me with research papers and fellow patients who urge me to advocate for myself when my brain juice leaks.

I have a lot of problems right now

So, inevitably, I tapered off prednisone and fainted all over my condo for three days. Then I decided to be brave and try a new treatment: quercetin, a mast cell stabilizer. At first, it felt amazing. My kidney inflammation completely disappeared. Two days later, I lost my vision and feeling in the right side of my body.

After I stopped the quercetin and my vision came back, I lost hearing in my right ear. I have no idea why my mast cells decided to trap a bunch of fluid in my ear. I tried to tough it out, but vertigo forced me to crawl like a baby. Sudafed opened up my ear tubes, but now the decongestant is pissing off my pee tubes.

And no one wants to hear about these problems.

So, here’s another.

A young guy moved into the condo next to me. This is significant because until now I was the token young person in the building. It’s nice to live next to another person with a job and other priorities besides monitoring me, my dogs, and my garden. (Stop looking in my window, Susan!)

As soon as he bought the place, he started tearing down the walls. I think it’s admirable when someone renovates their own place, so I didn’t even mind the noise. Although I did get nervous when my bathtub shook as his sledgehammer blasted the adjoining wall.

The following day, as he continued to work on his bathroom, I learned my shower wall provides practically no sound barrier. Even with my inflamed ear tubes, I could hear every word of his TED Talk podcast… in my living room. Of course, at that moment my pee tubes declared it was time to relieve myself. Reluctantly, I sat down on the toilet. This episode was about gender and genetics. So, he’s a handyman and an intellectual. And yeah, of course, he’s attractive. After all, one does not remodel without muscles!

First impressions are everything, and the sound of my tinkle is reserved for my closest friends. I held my bladder and wished I had to do another 24-hour urine analysis, so I could pee in a bucket in the privacy of my bedroom. Maybe I need to go to the hospital to get my problems sorted out. Or at least until my neighbor puts a bathroom wall up.

Why I only write when I feel like it

“Write every day” is common advice pounded into aspiring writers’ heads. If not every day, writers are encouraged to schedule writing time and stick to weekly routines. The purpose is to train your creative brain to produce a steady stream of writing regardless of inspiration.

I love routines. My perfect morning starts with making my bed, a chai latte, and breakfast for my poodles followed by twenty minutes of reading and a leisurely shower. I love how routines minimize decision making and ensure I focus on my priorities.

However, a routine is a luxury not everyone can sustain. My body is unreliable. My health changes from hour to hour without warning. It does not abide by any clock or calendar, no matter how hard I try to bribe it. As a disabled and chronically ill person, I have given up on routines.

When I first got sick, I thought if I followed a strict routine, I would feel better. I created a conservative schedule of medications, healthy meals, exercise, and sleep. I tried to follow it every day and every day I failed. My routine was destroyed by bouts of dizziness, midday vomiting, and nighttime muscle spasms. Instead of feeling better, I felt worse as I clung to my schedule and ignored my body’s demands.

Five minutes of writing a day may seem like an easy commitment (I have tried it!), but some days I can barely walk or shower. Some days I must choose between eating and resting. Some days brain fog robs me of my words. On a bad day, I don’t need the added disappointment and guilt of a writing routine I can’t maintain.

I am not less of a writer, because I can’t write every day. In fact, my experience with chronic illness and disability enriches my writing. Furthermore, I love writing and doing what I love, at my own pace, is healing. In the end, writing when I feel like it helps me feel like writing much more often.

4 tips for writers with chronic illness (and everyone else)

1.  Set realistic, meaningful goals
I have less energy than most people, so I must choose my goals carefully. A near death experience incited my desire to launch blog. I cannot blog every day or every week, but I strive to post every two weeks. I remind myself that the quality of my posts matters more to me than the quantity. I also decided not to monetize my blog in order to save my energy for writing.

2. Write when you feel good, wherever that may be
Inspiration is extremely elusive when you feel like crap most of the time, so I make every effort to capture it. I’ve trained myself to jot every idea into my phone no matter what I’m doing. I dictated half of this blog post into my phone while sitting in traffic. Notes and outlines help me write when I feel good, but I’m not inspired. I always bring these with me to my medical appointments, where I spend a lot of time waiting.

3. Enjoy less taxing, creative activities when you don’t feel good
I’ve learned how to enjoy myself when my brain feels like mush. Podcasts, books, movies, and coloring are low-energy activities that can be great distractions, while stimulating creativity. You totally have my permission to binge on Netflix. I also recommend networking with other writers on social media. Networking can be as simple as liking someone’s posts and sending goofy memes. The chronic illness and disabled writing communities are awesome.

4. Be kind to yourself
Your body is not the enemy. When I’m unable to meet my goals due to my health, I acknowledge that I’ve been busy trying to stay alive. There is no writing pace that guarantees success, but you do need be alive in order to write. Fighting your own body and criticizing your limitations is not productive. Self-care will make you a better writer.

What goes up must come down

When I was seven years old, I took my first plane ride to California. I was technically visiting my aunt, but we all know I was really there for Disneyland. My parents promised me the Happiest Place on Earth and I believed them.

My aunt had the honor of taking me. Holding my hand, she led me around the theme park, as I marveled at the attractions. The first item we bought was an autograph book, commencing the hunt for Disney characters. As the morning progressed, I became braver at approaching princesses. I even procured my own princess hat.

So, when my aunt suggested Splash Mountain, I was excited. I love water. She asked me if I was sure, and I said yes. To be certain, we watched several boats drop down the waterfall, as the photo kiosk captured gleeful riders.

I hopped into the seat next to my aunt and boat continued to glide forward through the towering rock walls. I grasped my aunt’s hand on one side and the handrail on the other. The first dip, a few feet, made me giggle and my hands relaxed. We drifted along the outside of mountain, and re-entered the dark cavern, this time surrounded by ducks, alligators, and bears. At each turn, new creatures sang and danced along to the catchy big band music vibrating throughout the mountain.

I snapped back to vigilance as we approached the first big conveyor belt. The boat tipped backward and I tried to determine how high we were climbing, but it was dark. I simultaneously wanted the rumbling of the boat to stop and to not stop. Finally, a small circle of daylight appeared at the top of the lift.

My aunt squeezed my hand and whispered in my ear, “What goes up must come down.”

I tried to pull my hand away. My aunt snickered. I tried to reckon with her warning. I imagined throwing a ball in the air. The ball fell. I didn’t want to fall. I was only seven years old, but I knew gravity always won. Why would my aunt do this to me?

My panic was interrupted by the sight of the tree line. I’m pretty sure I wasn’t touching the boat as we dropped down side of the mountain. The boat began to climb another conveyor belt and my aunt taunted, “What goes up must come down.”

“I don’t want to go up anymore!” I screamed.

*****

My mast cells are beating up my right kidney again. The pain got so bad I swore I’d never drink water again, but I need water to live, so I decided to try a prednisone burst instead.

I FEEL GREAT!

If you’ve never been on prednisone, it’s sort of like 3 shots of espresso, except the buzz lasts from 8 am to 4 am every day. In fact, I forgot to drink coffee this morning, as if coffee is optional. I was too distracted by overwhelming feelings of hope, determination, and joy. I spent the morning scanning documents, mending clothes, and vacuuming air ducts. I’ve eviscerated every miscellaneous pile lurking in my condo.

From there, I moved on to shopping, online AND in stores. My FitBit battery can barely keep up. I take breaks for eating, of course. Food tastes great and prednisone allows me to digest many MCAS forbidden foods like spaghetti and chocolate. It’s impossible to cook a meal without dancing.

I’ve got my ducks in a row. I’ve got my poodles in a row. I am the best version of myself.

Of course, I wish I could feel this way every day, but prednisone is black magic. The main side effect is total destruction of your body. It eats your muscles and bones, while you swell into a bulbous blob. After a few months, your can-do attitude is offset by atrophy and disfigurement. My body is still recovering from 2015, when I took prednisone for a full year.

I know what’s coming. I have already begun to taper my dose. In a few days, my heart will pound, my head will swirl, and I will struggle to sit up on the couch. I will want to sleep from 8 am to 4 am every day. I will tell my friends I feel like I am dying.

What goes up must come down, but I’m sure as hell going to enjoy this ride while it lasts.

Disneyland

Seven year old me trying to hold it together after a long day at Disneyland.

I did a thing

Do you ever get a strong urge to go somewhere or do something totally out of the ordinary? There’s no apparent explanation for it, but you MUST do the thing.

As soon as the snow melted, I NEEDED to go canoeing. I NEEDED to leave the city and paddle down a river lined with tall, green trees.

Maybe it was an instinctual calling after months of hibernation and mountains of snow? Or maybe it was my body craving a physical challenge as it slowly regained strength? Maybe it was just an excuse to put my dogs in their adorable life vests?

This urge contradicted every precaution I’ve taken every day for the past three years. I imagined how many ways canoeing could go wrong:

  • The sun could trigger anaphylaxis and I would need an emergency airlift. The helicopter pilot would find me by following the trail of vomit floating down the river.
  • My arms could dislocate or lose all muscle strength. I would lose control of canoe and end up floating into the Mississippi River. Maybe the Gulf of Mexico.
  • A bee or a swarm of mosquitos could attack me and trigger anaphylaxis. Another river of vomit; another airlift.
  • I might fall in, have trouble breathing, and depend on my two toy poodles to swim me to shore. Except they are toy poodles, so obviously we’d end up in the Gulf of Mexico.
  • Everything could go well, but I might lose all energy right before I needed to drive back to the city. I have no idea how much that Uber would cost.

I did not feel confident.

The urge continued to nag, “You really need to update your Facebook photos. Think of how cute your poodles will look!”

So, I texted a friend, “Do you want to go canoeing?”

I waited for her to tell me it’s a horrible idea.

“Sure,” she said, because I have supportive friends that let me test my horrible ideas.

So, I picked a 4-foot-deep river and a cloudy day.

Perched on the bow, I felt a bit more confident, like an explorer, brandishing my paddle. I only dropped it once. The river, aside from a few mild rapids, gently guided us down stream. Basically, we floated the whole two hours. Our only real job was not to make any sudden movements and tip the boat.

My only source of anxiety during the trip was when one of my poodles tried to fight a bald eagle. Quixote, who is 9 pounds and cowers at geese, had no reservations about barking and lunging at a bald eagle swooping increasingly closer to our boat. I imagine the eagle was ultimately dissuaded by his blaze orange life vest, completely validating the hour I spent digging the vest out of storage.

When we reached the landing, I leaped out of the boat and dragged it onto the shore declaring my victory. I was alive. I did the thing. My friend congratulated me on an uneventful voyage, but only I could truly appreciate what I had achieved. I knew my accomplishment could be attributed to luck (the weather was absolutely perfect) as much as determination (months of painful rehabilitation). But most importantly, it was about conquering fear.

And my Facebook photos got so many likes.

IMG_9247