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Most people set an alarm to wake up. I’m fortunate — and grateful — that I’m not one of them. For several years, I’ve been self-employed in music and writing. This means I rarely need to be anywhere early in the morning. My music students don’t trickle in until after…

In 2004, when I was a teenager who hadn’t yet been diagnosed with granulomatosis with polyangiitis, I suffered a severe onset that required a drug-induced coma for treatment. I’d only been awake a few days when I heard a cheerful voice outside my ICU room. “Would your patient like…

Today is Lab Day. It’s been highlighted on my calendar for weeks, two words, stern and unavoidable. On the surface, it’s only a quick task: Show up, give samples, leave. But realistically, these visits demand a lot of my mental and physical energy due to the myriad little details. My…

We were 600 feet above sea level as we traversed a dormant volcano rim in Hawaii. We followed a narrow ledge with nothing on the trail to guide us. My friend, a Honolulu resident and avid hiker, told me that if we got lost, the only safety recourse was to…

“Do you want to get dinner this weekend?” It’s a simple question with a complex answer for a chronic disease patient. What time will we eat? At which restaurant? Does the menu suit my needs? Do I have the budget for it this month? Will I have the spoons…

I’m in the gym, on minute 17 of the stair-stepper machine, exhausted and desperately watching the timer count up to 20. That’s today’s goal: nonstop stepping on levels five and six for 20 minutes. This session is bookended by a 10-minute treadmill warmup and cooldown to get my heart rate…

When the weather is nice, I tend to forget I’m sick. The sun is shining, the yard is green and inviting, and I don’t even have to put on shoes to enjoy it all. (In fact, according to the grounding technique, it might be healthier not to!) There are…

Summer mornings in my house are deliciously slow. Around 8 a.m., the dogs know our first task is to go outside and tend to the plants. I fill a watering can and make the rounds: vegetables, herb garden, succulents on the porch, and tea plants on the patio. The better…

I wish I could go back in time and tell my middle-school self that one day, math would be a positive thing. Algebra, trigonometry, and even physics felt alien to me. No matter how I tried, my brain did not function in a way that allowed me to conceptualize anything…

Receiving a chronic illness diagnosis can be frustrating and full of apparent dichotomies. After years of searching for answers, a diagnosis is a welcome end, but it also signals a beginning.  The doctors pronounced my disease to be granulomatosis with polyangiitis (called Wegener’s granulomatosis when I first…