Messages I received instead of GoFundMe donations

I’ve spent my summer suffocating on laundry fumes. My neighbor values the noxious fragrance of his laundry over my human life, so I was forced to launch a GoFundMe to afford a lawyer and a contractor. Friends and strangers alike have been incredibly generous in their donations, advice, and encouragement. Asking for help was terrifying–it always is–but once again, I was reminded that people care and want to help.

Of course, there were a few inconsiderate exceptions that poked my funny bone.

“Have you tried celery juice?”

Does celery juice pay the bills? If you find a vegetable that can heal my bank account, please let me know.

“There but for the grace of God I go”

Apparently, this means you feel lucky you’re not in my position. Or that God has no mercy on me? Or you don’t have mercy on my brain fog? There but for the grace of GoFundMe I go.

“Do not use western medicine!”

So next time I have an allergic reaction, I should just ignore my EpiPen? Because the last alternative medicine supplement I tried gave me anaphylaxis. I suppose you don’t like to use western money either.

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.