Month: September 2016

My summer without sunshine

I’ve never been so happy for summer to end, happier than any eager student or pumpkin spice aficionado.

This summer, I was sent to mast cell disease boot camp. And the rules were strict. Here is a sampler:

  • No swimming.
  • No boating.
  • No bonfires.
  • No barbeques.
  • No ice cream.
  • No beer.

(Although, I’m unaware of any summer camp that provides beer. Don’t tell me if there is one. That would just increase my resentment.)

Basically, I was trapped inside my condo for three months, because I react to both the sun and heat. Like, instantaneous, severe reactions. My only escape was work; in the safety of my car, I tunneled from one attached garage to another. Grocery shopping and dog walking were perpetual struggles. There were nights I didn’t eat and the dogs didn’t poop.

(Full disclosure: this occasionally happened before my diagnosis, before my beer allergy. I suppose there are some benefits to alcohol intolerance.)

So on top of the logistical challenges, I grappled with deprivation. There was nothing left to love about summer. I banned myself counting the missed memories and dissolving friendships.

(Okay, I sometimes I caught myself tearfully singing The Little Mermaid’s “Part of Your World”.)

Towards the end, I developed a very Minnesotan coping mechanism. Whenever the meteorologist forecasted a heat wave, I pretended a blizzard was coming. Because in the winter, it’s okay to cancel plans and stay home. In the winter, a weekend surrounded by books, blankets, and dogs is cozy, not sad or weird. In the winter, you find ways to live, not just survive. Sometimes, I even shut the shades to ignore the cruel, taunting sun. No more FOMO.

Today, it is 67F and cloudy, my definition of a Top Ten Weather Day. I’m going to enjoy my errands and walk my dogs. And I might even get cozy, too.

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This is what heat does to my skin. It hurts, but not as much as the internal swelling that goes with it.

Happy first birthday, kidney stone

Yes, that’s right. I am celebrating the one year anniversary of passing my first kidney stone. Why would I want to celebrate such an excruciating memory?

Because it taught me I’m a badass.

Maybe a naïve badass. Initially, I tried to meditate through the pain, but couldn’t shake the fear that maybe one of my organs was about to explode. So I went to the ER and was diagnosed with a 5mm stone and a few smaller ones. Begrudgingly, I began pain medication around the clock. I started to feel pretty good. So naturally, I flew to Nashville for a work conference.

And then that f’er decided to move. Good thing “kidney stone” is free ride to the hospital from strangers. (“Oh, bless your soul, my daddy used to get those. A grown man, and he’d be on the floor crying.”)

To say I was a badass does not also mean I was a peach throughout the experience. I quickly surpassed the ugly cry. Every time the pain medication wore off, I became a werewolf, growling and clawing in my hospital bed, restrained only by the IV that became my lifeline. I was admitted for surgery, but sure enough I passed that f’er as the sun rose.

And I didn’t even get a gold star. Or card. As if nothing happened, I had to submit a summary of the work conference that I half missed.

Our society struggles to recognize the sour milestones of our lives. I celebrated my MCAS diagnosis with donuts. And it made everyone uncomfortable. One guy even tried to put a donut back once he realized the occasion. Although bittersweet, my diagnosis was a more memorable and life-changing milestone than any of my birthdays.

The internet says passing a kidney stone can be more painful than child birth. I abandoned the 1-10 pain scale long ago, but find the kidney stone pain comparison very useful nowadays. Instant credibility.

So today I’m celebrating that little stone that now resides in a laboratory in Tennessee. And the absence of any siblings since. Sometimes pain is inevitable and there is nothing to do but endure it. With MCAS, pain is a daily visitor. I suggest you celebrate when you escape it.