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.

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.

This is why I don’t go to urgent care

This week, I got normal people sick.

Luckily, I noticed the second my lymph nodes started to swell, because I am hyper aware of my body. I took a Benadryl right away.

Then I sat on the couch and contemplated if I was dying, because last time I got the flu I legitimately almost died from anaphylaxis.

However, I know catastrophic thinking is bad, so I decided to distract my thoughts by cleaning my condo. (Also, because I like to return to a clean home after near death experiences.)

Unfortunately, I started shaking from a low-grade fever and bronchospasms started stabbing me in the chest. I knew I should probably go to the emergency room to be tested for the flu, but sometimes I have to argue with the doctor just to receive fluids. The only certainty is the $100 copay.

I checked the wait time at my urgent care. None. Only a $25 copay. So, I drove to urgent care, which is literally one block away.

When I told the urgent care doctor that I was worried I had the flu and I have mast cell disease, she googled mast cell disease and told me I have a rare disease.

Fortunately, I held my tongue.

Unfortunately, my skin began to prickle.

So, I took another Benadryl.

I realized the doctor was terrified of me when, for the third time, she asked, “But you’ll know if you need to go the emergency room, right?”

I convinced her to order the flu swab test.

When she left the room, I looked in the mirror. Deep purple, bruise-like hives covered my face, neck, and chest. My lungs spasmed and I gasped for air. I needed to go to the emergency room.

Luckily, there was an emergency room across the street.

So, I ditched the urgent care and heaved myself through the darkness, snow, and winter air.

Although, it kind of felt good to be outside, because my entire body was burning.

Once I was in the hospital, I was totally disoriented and had to ask for help getting to the ER. The walk seemed a mile long, and I considered laying down on the floor until someone brought me a wheelchair or bed.

When I got to the ER, the staff was extremely nice. They escorted me to a bed, placed an IV, and gave me medicine right away.

Unfortunately, that medicine included steroids.

After several hours, my reaction went away, and I went home.

And now I owe $125.

The following day was Pi Day, and because I was pumped full of steroids, I was able to eat pie.

Because I was pumped full of steroids, I ate a concerning amount of pie.

The Hellness Assessment

Every November, I feel compelled to smash my computer and light the room on fire while completing my employer’s wellness assessment. The supposed purpose of the assessment is “to support your overall health and wellbeing”. In actuality, it raises my blood pressure and triggers hives and emotional instability. Nonetheless, I submit myself to its faceless insults in order to save $500 on my health insurance premium each year.

The assessment’s 50+ questions remind me that every aspect of my health sucks. As if I’ve forgotten. The “right answers” are obvious, but I am committed to living my authentic life and answer with unabashed honesty. Here’s an example:

Pain assessment

The assessment should have ended right there. They should have sent me a gift basket and left me alone.

But it continued:

  • Have you had a flu vaccine in the past year?
  • How much rigorous activity do you do in a week?
  • Do you eat high fiber foods?

I do not do any of these things, because they tend to send me to the ER. If the goal of this assessment is to lower my health costs, then I should be congratulated for not doing these things. Instead, the assessment ridicules me. “Eating healthy is like medicine – and you may want to try some of that medicine. Work more fruits, veggies, and whole grains into your diet to refuel your body and brain.” As if I shoved two colonoscopy tubes up my butt without trying eating healthy first? I bet these are the same people that think beans are a magical fruit.

At the end, the assessment tells me I am “going in the right direction” while simultaneously displaying a chart that shows I am “well below average”. Well, thank you for reminding me I’m merely surviving. My list of weaknesses includes nutrition, physical activity, pain and stress. Do you know what would lower my stress? Eliminating this damn assessment.

Finally, the assessment recommends a list of activities, or in my case, ways to die. At first, I was encouraged that this year’s assessment included a box to indicate a disability that limits physical activity. However, apparently it had no bearing on my results and the recommendations included biking to work every day.

There are two recommended activities that don’t threaten my physical health. However, one of them almost crushed my mental health: coaching from a certified nurse. Last year, I signed up for phone coaching with the hope of venting my frustration and holding someone accountable. On the first phone call, the nurse related what she learned about mast cell disease on Google. On the second phone call, she suggested more activities and I explained how each one would kill me. On the third phone call, she recommended I keep reading library books for pleasure and wished me luck. That was three hours of napping potential that I can never get back.

The other activity recommended by the wellness assessment, the one activity I am able and willing to do, is write an advance care directive. As if I wasn’t in a foul mood already.

Listen here, wellness assessment people:

I am enough despite your ableist assessment. Do not compare me to other people. Do not waste my time with your insulting questions and recommendations, while I fight bigger battles like ADA accommodations and access to medical care. I see more than a dozen doctors a year; it’s best to let the specialists make recommendations. I am a fabulous medical unicorn. I deserve infinite gold stars. And a gift basket.

Operation Crazy Straw Part Two: Delayed Reaction

“I don’t hate you,” I told my urologist when I return to his office for my stent removal.

“Not yet,” he smiled.

I don’t usually tell my doctors whether I do or don’t hate them, but my urologist warned me multiple times that I would probably hate him for placing a stent. Strangely, I had opposite experience, little to no discomfort for five days. At worst, I yelped when I bent over the straw poked me in the bladder. I took prednisone and Benadryl religiously to suppress any mast cell reactions.

I was most anxious for the grand finale: pulling the 8” crazy straw out of kidney via my pee hole without sedation. Fellow kidney stone suffers warned me that I might scream, but the pain would only last a few seconds. Before surgery, I told my doctor that I was most worried about the barbaric stent removal, not the pain itself, but a mast cell reaction to the pain.

I set my bright yellow EpiPen in front of my urologist, a subtle threat that I was to be taken seriously.

“You know how to use one of these, right?” he joked uneasily to the nurse.

“I’ll handle the EpiPen,” I asserted. “I premedicated an hour ago. Here’s my emergency protocol.”

I lay down on the exam table wondering if I should be more uncomfortable about my nakedness. Sometimes, it just feels good to lie down.

“So, how is work?” my doctor asked.

“Well…” I said, as I caught a glimmer in his eye and felt a sharp tug in my bladder that shot to my kidney. A confusing mix of nausea and relief rendered me silent as the plastic stent dragged slowly out of my kidney, ureter, and finally bladder. Yup, it definitely was over 8 inches.

“That was easy,” I said, sitting up bewildered.

At noon, I returned to work feeling like a badass with the urge to hula. I announced to my coworkers I had no pain for the first time in six months! Furthermore, I tolerated that crazy straw better than anyone! Better than a mother serving her kids milk! I updated my Facebook: “Stent removed. No anaphylaxis. No more pain!”

Around 2 pm, my badassery wore off and I needed a nap, so I drove home. Halfway through Despacito and my commute, I felt a sharp twinge in my ureter. The pain struck again and again, and I felt the prickly burn of hives erupting on my neck. By the time, I got home I was shaking in tears and I staggering to the emergency room. (Yes, I live next to a hospital. It’s weird and serendipitous.)

The pain in my ureter became so bad I prayed to lose consciousness. When my friend rushed in the door, I reached for her hand (a sure sign I’m in level 10 pain) only to realize I barely had the strength to grasp it. All of my muscles braced against the pain. I worried I would lose control of my bowels as I shook from exhaustion. I tried to muffle my sobs and slow my breathing to no avail. I would have rather given birth to twins. Naturally.

I believe I have (unwillingly) become an expert on the pain scale. MCAS can cause daily bone pain, neuropathy, cramping, and spasms. While I have not given birth to a child, I have birthed a 6mm kidney stone.

This was worse than passing any stone, the worst pain of my life. My CT scan showed right hydronephrosis and hydroureter. My mast cells had swelled my ureter shut and my kidney was backing up with urine. The nurse gave me IV Solumedrol, Benadryl, and Fentanyl. The Fentanyl allowed me to tolerate the pain until the Benadryl reduced the swelling (and hives all over my body).

With the pain and swelling under control, I went home to manage the reaction on my own with pills. BIG MISTAKE. About one hour later, I rebounded and blubbered my way back to the hospital on foot. (This is how rumors get started among watchful neighbors.) I knew I wasn’t going to die from my reaction, but for a few milliseconds I considered death better than the hell I was experiencing.

I learned two very painful mast cell lessons that day.

#1: Expect the unexpected.

Although I anticipated a reaction, the timing and intensity blindsided me. It would have been unsurprisingly if my mast cells had reacted to the surgical lasers or the stent. However, it’s incredibly rare (maybe unheard of) to react hours AFTER a ureteral stent is removed. Thank goodness I was close to a hospital.

#2: Do not feel silly for taking precautions. 

My anxiety about the stent removal was completely validated! In fact, I was not cautious enough! Retrospectively, I realized I let my Benadryl wear off right after the removal, because I felt okay. However, my mast cells needed continuous Benadryl.

So I asked to be admitted – my first hospitalization with mast cell disease.

To be continued…

I suck at four day weekends

I haven’t blogged in a bit, because I’ve been feeling sorry for myself. I squandered a four day weekend. Woe is me.

I rarely get vacation days, because all of my paid time off is used toward sick time. I think it’s mighty unfair that chronically ill people can’t afford vacation days because they spend their time on trips to Pain Island and Brain Fog Beach.

Yes, I’m in a sad and bitter mood, because I was given the rare opportunity of four days of rest and I completely overcommitted. I decided would compete in an AKC agility trial all four days. I would like to remind you that I am allergic to exercise. And also dogs.

Agility is the dog sport with the tunnels, weave poles, and other obstacles. Each run lasts about 50 seconds, so with premedication my body can tolerate a couple. But not TWELVE. I told myself all the pain would be offset by an armful of ribbons and maybe a new title. Instead, I came home with zero ribbons and a few embarrassing videos.

It turns out almost everyone who signed up for all four days regretted it. Why do we do this to ourselves? Why do I forget my limitations around others? Do I enjoy the disapproving looks from my poodle?

I struggled with overcommittment before I was diagnosed, which certainly contributed to the severity of my disease. However, now I face violent and serious consequences.

Like alien nightmares.

It was a short dream on Sunday night. I heard a siren and instinctively began running, trying to find somewhere to hide. Suddenly, the floor I was standing on started to rise toward the sky. The sides of the floor folded up like a box and then a spaceship, and I realized I had been captured by aliens.

I awoke sickened with terror, only to realize I couldn’t move at all. Bursts of hot pain began shooting down my arms and legs. I watched helplessly as my limbs shook from spasms. In reality, I had been captured by my mast cells in the dead of the night.

The attack left me exhausted physically and emotionally. I felt anxious about returning to work unrefreshed, but forced myself to attend the remaining day of the competition. When would I feel refreshed again? Weeks? Months? I came home and cried irrationally at the possibility of never enjoying a vacation again.

Then I ate a chicken quesadilla. I watched Season Five of Girls and read David Sedaris’ “Naked.” My mast cells settled down too. Self care isn’t hard. The hard part is saying no.

I bought some pictures at the trial to cheer me up. Because I look super athletic. (They cropped out my moon face.) I guess people usually buy the pictures for the images of the dogs.

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Photo credit: GreatDanePhotos