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I’ve learned countless new words since my diagnosis — phlebotomy, stenosis, biomarker, etiology, hemoptysis, to name a few. There are long strings of syllables for medications and treatment options. And various types of doctors with “-ologist” at the end of their title. Even the name of my disease is a…

Today, I woke up hurting. While it wasn’t the pain that someone with fibromyalgia or rheumatoid arthritis might suffer, it caused enough discomfort that I couldn’t ignore it. A dull ache had settled in, from my neck to my knees, making it difficult to get out of bed. The previous…

I’m so tired. That thought threatens to dominate my mindset. It affects everything, including my outlook, motivation, and productivity. Later in the day, it might even tip my appetite levels out of balance. I just want to rest. I close my eyes again, but my brain is already scrolling through…

Humans are configured as social animals, regardless of personality type. We rely on each other, not only at a basic level for security, comfort, and good conversation, but also on a higher plane for things like artistic inspiration and love. The necessity of having “our people” around is never…

Last weekend, a friend visited from another state. An enthusiastic cook who is curious by nature, he suggested we experiment with a new recipe. We decided to make Afghan ashak, which are leek-stuffed wonton dumplings with garlic yogurt and spicy tomato sauce, and topped with a garnish of cilantro and…

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…