Six years

Six years ago, I was diagnosed with mast cell activation syndrome (MCAS). Although no one is happy to have a disease, let alone one as complicated as MCAS, I celebrate my Dx day, because I know how incredibly lucky I was to get diagnosed. 
 
On December 22, 2015, I drove a mere 5 blocks (because I was so inflamed I couldn’t walk) across campus from my office and paid a $35 copay with no awareness that I was seeing a world leading MCAS specialist. At the time, I couldn’t even find a definition of MCAS on the internet, let alone treatment options.  I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis). 
 
Diagnosis provided so much validation, but it did not solve my problems. Calming my mast cells required an immense amount of work. Last year, I described the first five years:

  • 2016: Total destruction and despair
  • 2017: Renovating my life
  • 2018: Building a support system
  • 2019: Survival and self-advocacy
  • 2020: Dreaming again

This year, my dreams are coming true. Last week, I celebrated 6 years of diagnosis and 8 months of remission. Today, I am celebrating the launch of my first online course, Maximizing Your Medical Appointments, to help people with MCAS and other chronic illnesses.

Although on Instagram, my life looks like one nonstop gleeful adventure,  I have spent most of my free time in the past three months in front of a computer pouring my knowledge and energy into this course. I created the course that I wish I had in 2015. This information would have saved me time, energy, and money. 

MCAS is unpredictable. Continued remission isn’t guaranteed. I have no idea what next year will be like. But I refuse to waste a single drop of my glorious remission energy worrying about it. As long as I can, I will continue creating joy and hope for our community. 

The Haunted Laundry Room

I wait until the building becomes quiet before opening my door. With a basket on my right hip and a jug in my left hand, I carefully lumber down the empty hall, doing my best not to rouse anyone. I never know if I’ll have enough time.

At the end of the corridor, I set down the jug and unlock a door. The automatic light flickers on and I peer inside. Along the wall, the mouths of two machines gape open and empty. The table is bare. A familiar, putrid smell lingers in the windowless room.

I close the door behind me and begin cleaning the first machine. I spray the inside of the metal drum and scrub around each of the tiny drain holes. I work quickly, yet thoroughly, until the tub gleams and my nostrils sting from vinegar. I insert my quarters, load my laundry, and pour clear detergent and more vinegar into the machine. The machine jolts awake as I press start and I scurry back to my condo.

Thirty-four minutes later, I unlock the door and scan the laundry room again. I am still alone. I am safer alone. I quickly move the damp clothes to the dryer and refill the washer with more laundry. I toss six wool balls into the dryer and press start on both machines. The rumbling grows louder. Perhaps, this time everything will go as planned.

An hour later, I return to the laundry room. The machines are quiet, and the air is warm. I open the dryer door and scream. On top of my clothes lays a translucent white square. I stare in disbelief at this miniature ghost. I know I checked the dryer before loading my clothes. I always check. I seize the dryer sheet by its very corner and fling it into the nearby trash can.

With both hands, I draw a warm ball of clothes to my face. A sweet scent fills my sinuses. For a split second, I am transported back to my childhood bedroom, to my yellow blanket my mom used to wash. Suddenly, an invisible force begins to choke my neck. My skin prickles and burns.

I rewash the clothes, but still the scent haunts me. When I return to the laundry room for the fourth time, tired and swollen, a second basket looms on the table. Unfamiliar colors swirl inside the clear door of the washing machine. On top of the machine, a bottle of detergent drips with blue slime.

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. The specific culprit? Soy.

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.