3 tips for MCAS warriors

#1. Never underestimate your mast cells

Everyone has mast cells. Part of our immune system, mast cells keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.

However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.

#2. Do not ignore or argue with your mast cells

You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.

If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!

#3. When in doubt try Benadryl*

*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor.

BENADRYL IS MAGIC.

Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.

Vomiting, dizziness, IBS – Benadryl!

Muscle pain, bone pain, migraine – Benadryl!

Rage, anxiety, doom – yes, can you believe it?! Benadryl!

Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to histamine.

Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs. In fact, I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. However, Benadryl can be incredibly helpful in understanding mast cell disease.

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.

Summer essentials for MCAS and EDS warriors

Minnesotans have a deep appreciation of summer. It is the reward for surviving blizzards and subzero mornings. As soon as the trees begin to bloom, we magnetize to our celebrated lakes for barbeques, swimming, and boating.

Too bad my mast cells hate summer.

Specifically, my mast cells hate the sun, the heat, and humidity. Fifteen minutes in the sun can trigger six hours of fever and vomiting. My mast cells hate the winter too, but that was easier to accept. The only fun aspect of living like a vampire is being able to say you live like a vampire. And to be honest, that hasn’t made me many friends.

This summer, overall my health is more stable, but my joints are not. It seems now that I’m less inflammed, my hypermobility is more noticeable. Like many MCAS patients, I also struggle with Ehlers-Danlos Syndrome (EDS). My mast cells are tolerating a more active lifestyle, but now my joints, especially my ribs, are slipping all over.

This year, I am determined to enjoy my summer anyway, even if that means getting up before sunrise. I’ve even assembled a survival kit of sorts. Here are the top five essentials I rely on to enjoy summer despite MCAS and EDS:

A cute hat

Emphasis on cute, because you should love your hat enough to wear it at all times. I have a huge head, so I’m a fan of straw, bucket hats, but UV protection hats are best. I am also a big fan of having multiple cute hats.

A fanny pack

Fanny packs are back! This is great for two reasons. First, they are perfect for carrying Epi Pens. I no longer fear a severe reaction when I walk my dogs, but I know one pissed off bee could put me in instant danger. Second, fanny packs easier to carry than most bags, meaning less joint problems . I’ve been eyeing this Lululemon bag.

Birkenstock insoles

Everyone has heard of Birkenstocks, but people rarely know about Birkenstock’s insoles. I actually find the insoles more comfortable. They provide both arch and metatarsal support and slide easily into any shoes. I can’t imagine my walks around lakes without them!

Zero gravity chair

When I asked other EDS warriors about patio furniture, the response was unanimous. I got mine from Target and it’s amazing. When my friend tried it, I worried she’d never leave. Perfect for outdoor reading, recovering, or wasting time on Facebook.

Signature (non-alcoholic) cocktail

Okay, it’s not really a cocktail at all, but this summer I’m observing happy hour. Every afternoon, when I slurpy my icy, mast cell stabilizing drink, I feel more summery. Your drink can be whatever you want. Here’s what’s in mine:

  • ½ cup frozen blueberries
  • ¼ cup raspberries
  • ¼ cup pomegranate juice (mast cell stabilizer)
  • ¼ cup lactose free Organic Valley 2% milk (easy to substitute)

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Wishing you an enjoyable summer! What’s your favorite summer essential?

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 http://www.rarediseaseday.org.

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?

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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.

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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.