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.
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. Is my thick hair suspicious? Can they tell I haven’t tried chemotherapy yet? 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 more than 5% of people have MCAS! Although MCAS is current classified as a rare disease (affecting less than 200,000 Americans), I wonder what this classification is based on. Did people just start calling it rare simply because it’s newly recognized? I have never seen an official count of MCAS patients, although pulling the ICD-10 diagnosis code data on MCAS would be an easy start.
MCAS is 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 Chinese, 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 www.rarediseaseday.org.
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.
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:
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.
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.