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.)

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.

Sh%t my insurance company says – part two

She earned the name Nurse Not Helpful within two calls.

Sure enough, she had never heard of MCAS. The first call consisted of over a hundred questions about my lifestyle – an attempt to identify anything that may have contributed to my expensive medical treatments, except the disease itself. I tried to enter my meditative state as I pointed out the shortcomings each of her suggestions. It was exhausting. She said she would call me back in a month with resources.

Meanwhile, I caught the flu and it triggered life-threatening anaphylaxis (and an ambulance ride). I was so dehydrated from vomiting and incontinence that my body couldn’t even produce hives. My skin was gray and my organs were starving for oxygen. I never want to be that close to death again.

This is the perfect example of why ER visits are inevitable with this disease. I am allergic to flu shots and although I do my very best to shield myself from others’ illnesses, I am still exposed, in this case at work. So when Nurse Not Helpful, the insurance employee charged with the task of reducing my ER visits, called for the second time, I was eager to hear how she proposed I avoid these situations.

After suggesting several commonsense prevention tactics that I adopted long ago, Nurse Not Helpful said, “Well, this is just something for you to consider. I recently read a study that showed the benefits of swishing water in your mouth to eliminate viruses. Just regular water, nothing in it, every day. Maybe you could try that.”

I swear I could feel my mast cells pumping histamine into my body.Untitled design

Things I did not say because I’m a good person:

Wow, why hasn’t anyone on my medical team suggested this innovative treatment? In fact, why doesn’t everyone do this? We could eliminate flu season! Hey, screw the flu, call the World Health Organization –  let’s eliminate the Zika virus!

Did you know that stupidity is one of my triggers? Let me guess, you read it on the internet.

Instead, through gritted teeth, I said, “Sure, I’ll try it.” Now I’m a bad person anyway for lying.

Against my better judgment, possibly because my pain threshold is so high, I entertained a third phone call. This is all I remember:

Nurse Not Helpful continues with her haphazard line of questioning, “Well I’ve been talking with some providers familiar with your condition and they say that antihistamines are the first line of treatment. Do you take a daily antihistamine?”

“Yes, because otherwise I’d be DEAD. I take at least EIGHT antihistamine pills daily,” I replied, unfiltered. Apparently, our first phone call in which I spent 30 minutes listing my medications and doses was worthless.

I didn’t schedule any more phone calls. But she kept calling anyway. When I didn’t answer, she sent me a letter. Finally, I called her back and announced I was done with the phone calls, the “program” was unhelpful at best, and the insurance company should have contacted me a year ago when there was an opportunity to help. I may have also said that my time would have been better spent napping. Good riddance.

Sh%t my insurance company says – part one

Once a month, I am forced to take a phone call from Nurse Not Helpful. She works for my insurance company and, although she won’t admit it, has been charged with the task of reducing my emergency room visits. Because money. My insurance company flagged me as a “frequent flyer” as if I enjoy paying for these visits more than they do.

With MCAS, ER visits are inevitable, because anaphylaxis is inevitable. Although I try my best to control my environment, my list of triggers is ever growing and I can’t control other people’s actions, like wearing perfume. My reactions typically start with hives or shortness of breath and progress to nausea and swelling. I race the reaction by drinking Benadryl and then struggle to hold it down like a bad shot of tequila. However, if I start vomiting and can’t keep my medicine down, I have to go to the ER for an IV. Or else I die.

Apparently, eight is the threshold number of ER visits my insurance company uses to flag policyholders as potential money wasters. Never mind the countless, expensive procedures I endured pre-diagnosis, including a repeat colonoscopy and unnecessary butt surgery. They denied my three appeals to go to Mayo in search of a diagnosis. Now that I have a diagnosis and need a specific treatment only provided in the ER, I am being investigated.

It started with a letter. “When you have a health condition, you may not always know how to get the care you need. That’s why we provide you with access to a registered nurse to help you navigate the sometimes complex world of health care.  As a clinical advocate, I can help you: understand your condition; learn about treatment options and providers; and find resources in your community to help bridge any gaps.”

This triggered hives and the following thoughts:

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My poodle’s version of a face palm.

  1. I know how to get the care I need – now. Where were you one year ago when I was seeking help?
  2. I have access to over a dozen registered nurses and doctors. I see them more often than my friends. In fact, my mom is a registered nurse.
  3. I am making an assumption here, but how are you going to help me understand a condition you’ve never heard of?

After trash-talking the letter with my therapist, I scheduled a one-hour phone call with my new “advocate”. This action was motivated by a small fear that if I don’t comply, there will be greater penalties in the future, and my propensity to argue when I know I’m right.

To be continued…