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.

Death, and feeling like death, by chocolate

Three years ago, before my diagnosis, on a chilly fall night much like this one, I decided to warm my condo by baking. I cracked a couple eggs in a large bowl, stirring in water, oil, and my favorite brownie mix. The thick batter rippled into the square pan as I scraped the bottom for every drop of chocolate. For 30 minutes, I tried to occupy myself as the heavenly aroma taunted me.

I live alone, so you can guess how this story ends.

Yes, I ate the whole pan. What was I supposed to do? Share with my coworkers the next day? Don’t be silly. The brownies wouldn’t even be warm and gooey by then, which is the best part. So what if I tried to reframe the situation as an act of empowerment? Again, I live alone, so only my poodles were judging me.

And then I threw up the entire pan of brownies.

Turns out warm and gooey vomit is also less painful, but I couldn’t believe how my body was forsaking me. Chocolate is my solace, or so I thought. Maybe I had just eaten too much?

So a few months later, when I baked my next batch of brownies, I only ate half the pan. Surprisingly, I puked those up too. The next day, I tried a very conservative 2”x 3” piece, promptly vomited, and lost my desire for brownies. I have not had one since.

*****

My disease has forced me to give up a lot: sunshine, sports, and social events to name a few – but I’ve accepted the adjustments without much complaining. However, when I first read chocolate, specifically cocoa, is high histamine, I denied it. After all, chocolate always brought me joy and eased the tough days.I have fond memories of devouring rows of Oreos after a long day of school. I assumed chocolate was going to help me cope with this disease too.

I spent a full year in the “bargaining” stage of grief. First, I realized dark chocolate made me puke much quicker than milk chocolate because of the cocoa content. Luckily, I always have preferred the less dignified milk chocolate, and willingly gave up dark.

Next, I decided if I ate tiny portions of milk chocolate throughout the day, instead of a whole bar in one sitting, my stomach would be okay. I bought individually wrapped Dove Promises to help me ration. (Plus, I am fructose intolerant and Dove Promises don’t contain corn syrup.)

I wanted to ensure I received my regular daily serving of chocolate, so I usually began my doses at about 8 am every morning. My little reward for going to work, I told myself. Before lunch and after lunch, I’d have a couple more pieces. Then, almost every day, around 2 pm, I’d mindless demolish half the bag. I wouldn’t even pause to read the little promises in the wrappers. When the nausea and cramping began, I didn’t even feel regret. I took Benadryl and awaited my punishment.

One week, I was so tired, I ran out of chocolate. The craving gnawed at my concentration, but I noticed my belly felt remarkably more comfortable. I was spending fewer HOURS in the bathroom. A reasonable person would have stopped eating chocolate at this point, but I am not reasonable when it comes to chocolate. Instead, I decided the culprit was the soy.

Yes, I am ridiculous, but I was actually right. My chocolate addiction uncovered a severe soy intolerance. I had already cut most soy out of my diet, but of course I never considered eliminating chocolate.

Do you have any idea how hard it to find soy free, corn syrup free, milk chocolate? And how expensive it is? Soy free, milk chocolate also seems to have a higher cocoa content, so I settled on Theo’s Milk Chocolate Peanut Butter Cups as my preferred poison. Besides, peanut butter is protein, so basically, it’s a health food.

…which leads me to my current predicament. My local Whole Foods is out of my peanut butter cups. I guess I bought the entire stock. Then I went to Minneapolis, and bought their entire stock. I don’t know where I’m going to get it from next, but I’m certain nothing will stand in the way of my love for chocolate.

*****

P.S. Hell’s Bells and Mast Cells is now on Patreon! Please consider becoming a patron of this blog for as little as $1 per month to help me cover hosting costs. Plus you’ll get get exclusive writing and health updates from me! You can find more information about becoming a patron at www.patreon.com/hellsbellsandmastcells. Thank you for your support!

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.

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.

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