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.

Rare(ly diagnosed)

Today is Rare Disease Day and I started the day feeling like a fraud.

Kind of how I feel like a fraud when I have appointments at The Cancer Clinic. In the waiting room, I wonder if all the other patients know I don’t have cancer. Can they tell by my thick hair and rosy cheeks? Do they know I haven’t even tried chemotherapy? I feel sorry for myself sitting alone at The Cancer Clinic, yet I don’t even have cancer!

The truth is mast cell activation syndrome is likely not a rare disease. Some researchers believe up to 5% of people suffer from it! It is, however, rarely diagnosed for two reasons. First, it’s a newly recognized and very complex disease. It is the most confusing thing I’ve ever tried to learn. For reference, I’ve also tried to learn Russian, tax increment financing, and Twitter.

Second, diagnosis often depends a cold piss relay race across the country. You have to collect 24 hours’ worth of your pee in your refrigerator, pack it in a cooler, and bring it to a lab. The lab then ships it across the country and you pray it stays cool the whole time. For reference, I can barely give a urine sample in the ER without spilling it on myself.

This year, I teetered back and forth about celebrating Rare Disease Day. I don’t want to be the woman who cried “rare” only to inform everyone that in fact naughty mast cells are lurking everywhere. Yet MCAS patients face the same obstacles any rare disease patient faces: lack of information; few experts; inadequate treatments; and little to no research funding. So where do we fit in?

It’s kind of like when the check-in nurse at The Cancer Clinic learns I have MCAS and insinuates that cancer would probably be easier. And then I have no idea how to feel.

The truth is they all suck: cancer, rare diseases, and MCAS.

Rare Disease Day raises awareness about patients’ lives and advocates for research funding for treatments and cures. MCAS taught me about Rare Disease Day, but I don’t need MCAS to celebrate it. I’ve decided, rare or not, I’m crashing this party (via the Internet (because my mast cells don’t like actual parties)).

Learn more about Rare Disease Day at

I’m allergic to the cold and my dog won’t poop

As a Minnesotan, I try not to complain about cold weather. All November, I tell myself winter teaches us how to fully appreciate the warmer things in life. However, when the wind chill drops below -30F and I have to put a second pair of pants, my attitude gets icy.

I don’t want to wear any pants.

Winter is especially hard for me, because I am legitimately allergic to the cold. (Yes, I know this makes me sound like an idiot for living in Minnesota.) Discomfort and frostbite are the least of my worries, because if I get too cold, my mast cells induce temporary paralysis. Yes, temporary paralysis, as in I lose the ability to move for several hours.

Like any Minnesotan, I am prepared for winter. I have a remote car starter, two attached parking garages, a face mask, and a grocery delivery guy who wonders why a single lady needs 24 rolls of toilet paper.

But I also have two toy poodles, one of which shows no concern for my well-being.

So last week, when the morning air was so cold it hurt healthy people to breathe, I thrust my poodles out my patio door. “Go poop!” I whispered as authoritatively as possible without waking my condo neighbors. The dogs trotted like two wind-up toys about three feet before freezing mid-step, each holding one paw in air. I ran out to retrieve my poodle statues.

As I untangled eight Velcro booties, I wondered if I was going to be late for work and if this was an acceptable excuse. I’m sure you’re not supposed to wrap the straps as tight as tourniquets around their paws, but I’ve played enough rounds of “Find The Dog Boot” to last a lifetime. Once again, this time with boots, I shooed the dogs outside. They high stepped halfway across the patio. One poodle pooped, but the other glared at me.

“I don’t poop in boots.”

“How about socks?” I negotiated.

If you think securing eight dog boots is a feat, try stuffing four paws into socks the size of a thumb. As I unsnagged each toenail from the knit, I tried to recall why the hell I bought dog socks in the first place. Since when does my dog have his choice of footwear?


The dog socks

He clearly preferred the socks as he romped around the patio. However, no poop – unless you count the rabbit dropping he ate with gusto.

The poop boycott continued for several days. Yet, dieting was not part of his New Years’ resolutions and he did not consider limiting his food intake. One night, I felt sorry for his discomfort, but mainly anxious about the impending spaghetti factory explosion, so I put on my coat, hat, boots, gloves, scarf, mask, and his socks. I took him to the other end of my condo building, where I could demand him to poop as loudly as I wanted. We walked concentric circles in the snow until he finally popped a squat and I squealed victoriously. Although most of my skin was covered, the cold permeated my bones as I waited for him to unload.

Twenty minutes later, in the warmth of my condo, I felt a wave of heaviness and doom, the funny feeling I get when my mast cells are about to wreak havoc. Quickly, I made a pot of organic mac and cheese, the obvious first step in triaging most of life’s problems. As my arms got harder to lift, I knew I had stood outside too long. I grabbed my bowl of pasta and phone, and settled into a nest of blankets on the couch.

I used to panic from these reactions, assuming I was having a stroke. When I realized I wasn’t dying, I’d channel my inner Jillian Michaels, “Unless you faint, puke or die… keep walking!” But my limbs refused to move. I tried to make the best of the situation and meditate, but instead I’d ruminate on everything I needed to, but couldn’t currently, do. In the process, I’d forget my paralysis and try to get up again, refueling my frustration and determination to will my body to move. Eventually, I’d fall asleep.

This time though, I scarfed down my macaroni (hunger and paralysis are a bad combination), turned on a podcast, and prepared for nap time. My poodle approached the couch slowly, requesting permission.

“Don’t you dare ask me to play ball,” I warned him. He jumped onto my lap and curled into ball.

I stopped keeping score of my poodle’s bowel movements, focusing on surviving the workweek with angry mast cells. The cold-induced fatigue forced me to skip dinners and resign myself to early nights in bed. By Friday afternoon, I was eager to go home and collapse.

However, when I opened the door, I was greeted by a pungent smell. My poodle was suspiciously waiting for me in the doorway.

“Where did you poop?” I demanded. He knew exactly what I was referring to, but remained committed to his belief that silence is the best defensive. So I began my Friday night with a turd hunt.

I tried to imagine where I would hide a poop. Behind the couch? Below the dining room table? In the closet, among my shoes? The smell was powerfully misleading. As I searched, I estimate how much of my damage this would cost me. In the end, I found it in the most unexpected room. And then I wasn’t even mad.


The deliberate accident

“Did you try to poop in the toilet?” I asked, trying not to giggle.

He wagged his tail.

My top 4 most surprising triggers of 2017

One of the most frustrating aspects of mast cell disease is every patient has different triggers. The only way to learn is trial and error – it’s less like learning to ride a bike, and more like trying to run through a minefield. Oftentimes, success is measured by how many days in a row you’ve managed to stay out of the hospital.

Last week marked the two-year anniversary of my diagnosis. I’ve learned more about mast cells than most doctors, and yet, every day feels like a narrow escape. Even when I feel fully prepared and hyper vigilant, my mast cells surprise me – less like someone jumping out and shouting boo, and more like a coup d’état. My mast cells are ungrateful haters with a questionably dry sense of humor.

Here are the top four triggers that blindsided me this year:

#1. Eyeglasses

This year, I discovered my mast cells hate plastic – clamps of IVs tubes; the shell of my FitBit; hospital wristbands. While they are not life threatening reactions, the rashes are painful and unsightly. Now I’m reacting to the nose pads of my glasses, even though I’ve worn them for the last four year. Of course, I have contacts… but those are plastic too.

#2 Ureteral stent removal

Need I remind you of my most painful reaction of the year? Of my life? I’ve already covered this in detail, but in short, my mast cells revolted against my ureteral stent REMOVAL. While I had prepared for a reaction to the 8” plastic stent being shoved up my pee hole, my mast cells decided to protest four hours AFTER its removal. And now I’m a urology legend.

#3 Wall art

Leading up to my kidney surgery, I was feeling a bit down, so I ordered a large canvas painting of birch trees to enjoy while I recovered. When it arrived, I unpacked it from its box and leaned it against the wall to admire the vibrant colors. As if I was in the forest myself, the scent of pine filled my lungs and I broke out in hives. The frame was made of pine, my most severe IgE allergy.

#4 Pumpkin scone

Every fall for as long as I can remember, I have stuffed myself with pumpkin bread and pie. This is why it took me two weeks and three pumpkin scones to realize why I was losing my vision and passing out in my office. What is fall without pumpkin spice?

Did your mast cells pull a fast one on your this year? I’d be surprised if they didn’t. Share your story in the comments below.

When mast cells commit the perfect crime

A new pain became the center of my universe last week. Well, it’s not really new, but I avoided telling you about it, hoping it would go away. I haven’t been able to sleep on my right side for weeks. I ignored it until last Monday when I threw up in my office and burst into tears in front of my boss.

That’s when I decided to go to the ER. I worried my gallbladder was about to rupture, but all of my labs and imaging were normal. At first I declined pain medication, but my pain became all consuming. Every time Twinkle Twinkle Little Star announced the birth of a baby on the hospital intercom, I could only think of pain. “Another ripped vagina,” I thought.

On Wednesday, I was injected was radioactive material to check the functioning of my gallbladder. For two hours, I lay strapped to the scanning bed as my right side stung and throbbed. The radiologist informed me the results were normal. I cried the whole way home, aching and hopeless.

As I pulled into my condo’s driveway, I noticed a woman walking a small, white dog. Its tail bobbed with each springy step. I wiped my tears and smiled for a brief moment, distracted by the dog’s contentment.

As I drove closer, I realized it was my dog. I forgot my neighbor had offered to walk my dog.

On Thursday, I met with a surgeon about removing my apparently healthy gallbladder. We both agreed my mast cells are likely to blame, but there is no evidence. My mast cells are committing another perfect crime. It’s possible gallbladder removal could relieve my pain, but there’s no way to know for sure. Meanwhile, I am losing my sanity (and weight).

I don’t know what I am going to do. Today, the pain is shooting up my back and into my jaw. The holiday season is compounding my hopelessness. Right now, my only consoling thought is imagining giving my gallbladder at my office’s white elephant gift exchange. Luckily for my coworkers, my gallbladder (if removed) will need to sent to pathology. Bah humbug.

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.

More mast cell grievances from Minnesota

My kidney still hurts. Removing the stones relieved the severe pain, but my mast cells are still spiteful from the surgery. I asked my urologist if I could try a mast cell stabilizer that targets the urinary tract. My hypothesis is it would decrease my kidney and ureter inflammation and consequently, I would collect less stones. My urologist said he hasn’t read any research supporting my claims.

Of course not. I taught him almost everything he knows about MCAS. Furthermore, I AM THE RESEARCH. Literally, I am a MCAS research participant. Am I supposed to jeopardize my body while I wait years for research to be published?

He asked me if anyone was managing my MCAS, which is the Minnesota way of telling me to seek help elsewhere. No, no one wants to manage my MCAS since my specialist left the state.

And then my urologist told me to piss off.

Okay, he actually told me to complete a 24-hour urine analysis. Another repeat test, another waste of time.

My desperation compounded when I learned Selena Gomez got a kidney transplant. If Selena, a multi-platinum singer, can’t save her kidney, I fear mine is also doomed.

Additionally, Selena’s friend gave her the kidney. I don’t even know how to ask my friends to bring me dinner. So doomed.

Find a new doctor, one might suggest. Unfortunately, the MCAS situation in Minnesota has gotten worse. As you may recall, the university stopped treating MCAS patients after my specialist left. The university recommended three doctors in other networks. Since then, all three doctors have closed their doors to mast cell patients. That sounds horrendous until you hear Mayo Clinic also refuses to see new MCAS patients. Apparently, Mayo Clinic is currently considering if they will see legitimate MCAS patients. Whatever that means.

Yesterday, I received a $500 hospital bill and a letter from the university, which will no longer treat me, requesting a donation to support its medical research. It’s a miracle I did not spontaneously combust.