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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Choose your own (mis)adventure

“You and YOU ALONE are in charge of what happens in this story.”

This is the ominous warning given at the beginning of each Choose Your Own Adventure book, the popular 1980s children’s series. I used to check these books out of my elementary school’s library by the armful, enticed by the idea of being in charge. I carefully weighed the potential risks and rewards of each option at the end of a chapter, imagining my fate. Do I run for the nearest escape or defend myself? Should I ask the sorceress for help? Morocco or Boston?

The authors punished greedy and cautious readers alike. This pissed off my impulsive younger brother, who inevitably succumbed to flipping through the books in search of the most appealing outcomes. Then he would back track, memorize the best choices, and declare himself the winner.

To my disappointment, adult life is a lot less adventurous, aside from an occasional vacation and professionally led excursions. Instead, I am in charge of mundane misadventures. There are no new planets or ancient jewels. Basically, I’m just trying to stay alive and support my Etsy shopping habit.

My recent misadventure in healthcare reminded of these books and their valuable lessons: life is illogical and totally unfair. Oftentimes, health decisions are a gamble. Some options end up being a huge waste of time and money, returning you back to the original situation. Other times, all of the choices suck. To demonstrate what I mean, I present to you…

Choose your own (mis)adventure: Abdominal pain

You can no longer ignore the pain in your upper right abdomen. It has throbbed with increasing ferocity over the last two weeks, but you cannot recall any new changes to your diet or exercise routine. The Internet suggests it could be your gallbladder and upon inquiry, it seems like everyone you know has had their gallbladder removed. One friend warns you of the possibility of a gallbladder rupture. You wonder if this is related to your mast cell disease. Your back begins to spasm.

If you hope the pain can wait until you see can your primary care doctor, click here.

If you go to the emergency room, click here.


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Emergency room

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You check into the emergency room. Forty minutes later, you are ushered into a room and describe your pain to a doctor. The doctor orders an ultrasound and it looks normal. Blood and urine tests are normal, too. The nurse administers mast cell medications, but they have no effect on the pain. The doctor recommends following up with your primary care doctor. Although it cost you $100, at least you’ve confirmed you’re not dying. Right?

Click here to go to your primary care doctor.


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Primary care appointment

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In the clinic, your primary care doctor examines your abdomen and agrees your gallbladder is the likely culprit. She orders a HIDA scan to measure your gallbladder’s functionality. You drink 20 ounces of a milky sludge and lay still in a narrow tube for an hour. The HIDA scan is normal. You pay the $100 imaging deductible.

Meanwhile, the pain is affecting your ability to work and move. You research mast cell related gallbladder issues and discover half of MCAS patients feel better after gallbladder removal. Half of patients feel worse. Your primary care doctor recommends you consult a surgeon.

If you schedule a surgery consultation, click here.
If you decide to give up, click here.


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Surgery consult

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The surgeon acknowledges all your test results are normal, but agrees to remove your gallbladder with the recommendation of a gastroenterologist. You know two things to be certain: surgeons love removing organs, and this was a waste of time and $25.

If you schedule an appointment with gastroenterology, click here.

If you follow up with your primary care doctor in hopes of non-surgical solutions, click here.


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Emergency room 2

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The pain is shooting up to your shoulder and your back is spasming. Near tears, you hurry to the emergency room before the pain renders you unable to walk. The doctor reviews your chart. Blood and urine tests are normal again. The nurse administers pain medication and you have some relief, but no answers. Another $100 emergency room copay.

If you schedule a surgery consultation as recommended by your primary care doctor, click here.
If you get a second option in gastroenterology, click here.


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Primary care follow up

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Your primary care doctor examines your abdomen again. You break out in hives when she pushes in the center of your belly. She reassures you it is not a hernia, but suspects a muscle spasm. She says sometimes Botox injections can help muscle spasms in the abdomen. You hate needles and have no idea if you’re allergic to Botox.

If you give up and accept a life of pain, click here.
If you decided to try Botox in the stomach, click here.


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Gastroenterology

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The gastroenterologist tells you your gallbladder is fine and he doesn’t want to treat you because you have mast cell disease. He informs you that the clinic has hired a gastroenterology psychologist. He suggests she may be able to help you to learn how “food affects your mood.” You just wasted $25 and two hours of vacation time to be referred to a poop shrink. Your current psychologist agrees.

If you give up and accept a life of pain, click here.
If you follow up with your primary care doctor in hopes of a non-surgical solution, click here.


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Botox

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You died from Botox, but at least your stomach isn’t wrinkly. You didn’t leave a will for your poodles.

(Author’s note: It is unlikely you would die from Botox, but you really chose the worst option. Click here to give up and endure instead.)


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Give up and endure

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You swear off all doctors. You can’t afford them anyway. You self medicate with baths, HBO, and ready-bake chocolate chip cookies. If you could just figure out how to never move again, you would be pain free.

Four months later, a friend with MCAS recommends a chiropractor. You decide to go, because the pain is now causing your ribs to subluxate. The chiropractor adjusts your ribs, and you mention the pain in your abdomen. She palpates the pain and tells you its an adhesion. You wince and grit your teeth, as she massages the tender area. When she stops, the pain is gone. Forever.

The End.

(Based on a true story. What the hell.)

Mac and cheese and other drugs: why ingredients matter

Macaroni and cheese is my one true love. It always has been.

When I was seven and it was socially acceptable for me to eat neon noodles every day for lunch, I’d stick my head in laundry chute and yell, “DAAAAAAAAD!”

“What?” he’d shout from the basement. (We use cell phones these days.)

“I’m so hungrryyyyy. I’m starrrrrrving. Feed me. Feed me. Feed me,” I’d chant, while stomping on the floor until I heard him coming up the stairs.

In the kitchen, I’d hand my dad the box of pasta and assume my supervisory chair at the table. I imagined the best thing about being an adult was knowing how to make macaroni and cheese. I had tried on my own, of course, but noodles, water, and the magic powder were surprisingly disappointing. I watched my dad carefully, trying to learn, but the counter was too high. I begged him to teach me.

“What comes next?” I asked, while he poured the cooked noodles back into the steaming pot.

“It’s top secret,” he said.

“Tell me!” I cried.

“Secret ingredients. That’s why it tastes better than mom’s,” he said. (Years later, I would learn mom skimped on the butter, but I would never understand why.)

“C’mon!” I demanded.

“All of your favorite things,” he said.

“Like what?” I asked.

“Peanut butter, “ he said.

“You’re lying,” I accused him. It didn’t taste like peanut butter.

“Well, what do you think makes it taste so good?” he replied.

I didn’t have an answer. I stood on my chair, trying to see for myself.

“Now the ice cream,” he said.

“Stop lying!” I cried. “Tell me how to make it!”

He went to the refrigerator, retrieved a half of gallon of vanilla ice cream, and set it on the counter next to the noodles. Turning his back to me, I saw him scoop the ice cream. I contemplated everything I knew about food. I had never tried this. Maybe he was right. My mouth watered imagining the peanut butter and ice cream mixing together.

“How much ice cream?” I asked hesitantly.

“Two cups,” he said.

I believed him.

*****

Fours years later, I finally was old enough to babysit. I was certified by the Red Cross, and eager to earn money. Unfortunately, my parents still hadn’t taught me the most important skill of babysitting: how to make macaroni and cheese.

“Do you know how to make macaroni and cheese?” my first client asked.

“I think so,” I said. “You mix the box with peanut butter.”

And yet they still let me watch their child.

*****

Today, my macaroni and cheese is no longer neon orange. I buy organic, although still boxed, and use lactose free milk. Making it whenever I want is one of the best things about being an adult.

Gone are the days of blissful unawareness of the ingredients in my food and medicine. As digestion became increasingly painful in my 20s, I began vigilantly reading labels in grocery stores. However, I never thought to read the all ingredients in my medications.

One of the first lessons my mast cell specialist taught me was many patients react to the inactive ingredients in medications. These ingredients (also called excipients) can include fillers, dyes, binders, and preservatives – not the actual medicine itself. I used to think brand name and generic drugs were the same, yet I had awful experiences when my pharmacy changed my prescription. While the active ingredients are the same, the inactive ingredients can vary greatly. Now I only use dye free medications, and have memorized a list of manufacturers my body tolerates.

The same applies to supplements. I learned this the hard way two years ago when I tried quercetin, a mast cell stabilizer. The brand I chose used the least ingredients: just quercetin and cellulose, a common binder made from plants. I even checked it out on their website: “hypoallergenic plant cellulose.” Sounds great, right?

Three days of flu-like lethargy and one seizure later, I discovered the plant they used was Southern Pine. Pine is one of my most severe allergies. Why the hell would you put a Christmas tree in medicine?

Know what’s in your pills. It’s not sunshine and happiness. Or peanut butter and ice cream.

Going to the bathroom with a service dog

I have a service dog named Sancho. He helps keep me alive.

People often see him and say, “I wish I had a service dog!”

I want to ask, “Do you wish you were disabled too?”

I would gladly leave my dog at home in exchange for a life free of fainting and suffocating. People tend to forget I have a service dog because of my disability, and while I can bring my service dog most places, I can’t go most places because of my disability.

Furthermore, there is nothing glamourous about being leashed to a service dog all day. I receive constant unwanted attention. Sancho wears a large “DO NOT PET” patch to ward off inappropriate touching. Nevertheless, every single person within a 50-foot radius wants to start a conversation about my dog. At best, they smile and say, “Cute.”

I refrain from saying, “I know he is, but what am I?”

Sancho is basically my shadow. Again, this sounds great until you’re sitting on the toilet willfully ignoring the stare of a poodle. (To be fair, I do stare at him while he potties. Maybe I should be grateful he doesn’t command me to “go poo-poo.”)

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Sancho

When I started bringing Sancho to work, we had to learn how to cram ourselves into the bathroom stall without stepping on each other. (No accessible bathrooms on my floor.) Once inside, I had to teach him that peering underneath the stall was rude, no matter what you see, hear, or smell.

I believe public bathrooms should be a refuge of anonymity. I believe coworkers who start conversations while I’m in the stall should be fired. When I go to the bathroom, I want privacy.

In other words, I don’t want anyone to hear me fart and know it was me.

To my horror, I quickly realized Sancho’s furry butt revealed my identity in the stall. At first, I froze whenever someone entered the bathroom, refusing to make any noise whatsoever. Sensing the awkwardness, that person would then hesitate to make any noise whatsoever, creating a bathroom standoff. I waited them out every damn time. Soon I began to worry people would call me “the woman with the dog who hangs out on the toilet.”

To alleviate my anxiety, I came up with a more practical solution. I taught Sancho to tuck beside the toilet, completely hidden view. Now, after several months of practice, we enter the stall with the grace of Olympic ice dancers, and I rejoice in my dog’s ability to conceal himself.

Last week, I dropped Sancho’s leash on the floor, which is totally disgusting. (Another peril of having a service dog.) Within a split-second, Sancho picked it up, and I exclaimed, “Good job!”

Toilet paper rustled in the stall two doors down. I tried not to laugh.

Apparently, there’s a woman in our building who says good job to herself in the bathroom. Good thing no one thinks it’s me.