It’s my party and my mast cells will react if they want to

If I go to the ER today, will they give me a free birthday IV? How do spoonies celebrate their birthdays?

Today is my birthday, the first since my MCAS diagnosis. My mom kept pestering me to tell her “what I want” for my birthday until I snapped “a fecal transplant”, because I don’t know what I want anymore and I’ve learned that mentioning poop is an effective way to end a conversation. (Although, I’m not certain fecal transplants are promising for MCAS.)

I know what I don’t want. Surprises. I suppose, like many people, I’ve been saying this for years, but this time it’s medically necessary. I am “allergic” to surprises. It doesn’t matter if they are good or bad surprises. If my heart rate increases, I start to react. Here’s an example:

It was a typical, weekday morning commute – sipping coffee, sleepy-eyed behind sunglasses, transitioning to wakefulness in traffic. Per usual, I was daydreaming about writing a bestseller, while listening to my favorite podcast, So You Want To Be a Writer. I like to think of the co-hosts, Val and Al, as my long-distance Australian friends, but really I’m just an adoring fan.

Several weeks before, I had submitted a listener question on Facebook, but it was never discussed. I assumed it was deemed stupid, because I am an insecure pipsqueak in the world of writing. (I still have normal people problems, too.)

So I was rolling alongside dozens other half-awake Minnesotans, when I hear an ominous, “Hello, Keeya Steel.” I swallow air in fear Al may jump straight through my car stereo next. Val echoes, “Yes, hello, Keeya!” For a second, I was convinced a direct line of communication between my car and Australia had been established. As they went on to address my (not stupid) question, I realized I was not in the Twilight Zone and my fear turned to my pounding heart.

IMG_1414 (1)

Although FitBits aren’t always accurate, mine helps me stay out of trouble.

Sure enough, what should have been a lovely surprise, triggered a reaction. I anxiously monitored my heart rate on my FitBit, chewed some Benadryl liquid gels (yes, disgusting), and prayed I would not need to be rescued on the highway. Thankfully, I made it to work, still breathing, albeit covered in hives.


So my wish is for an uneventful birthday.

I should mention, today is my 30th. This milestone compounds the pressure to celebrate. The truth is these “milestones” are a crock of fecal transplants. They don’t define how you feel or who you are.

This year has taught me to celebrate each day, whether I’m 29 or 30, well or unwell. I am grateful for my time in this wild world and for the crazy people who help me to be here.

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