Columns

It’s only March and I’m already running out of spoons

In her classic 1990s song “Ironic,” Alanis Morissette sings about spoons. Describing life’s little ironies, the Canadian singer proclaims, “It’s like 10,000 spoons when all you need is a knife.” Hey, if Morissette doesn’t need any of those spoons, I’d be more than happy to take a few…

My anxiety about the future manifests in curious ways

A few years ago, I shared an image on social media of my growing library. I love thrifting books just as much as I love reading them. It’s been a joy to invest in my collection of secondhand books in adulthood. A friend and fellow chronic illness warrior commented…

PH is rare; access to pulmonary rehab shouldn’t be

Do you know about pulmonary rehabilitation? Maybe you’ve participated in a few sessions or you have a loved one who did. I didn’t know about these programs until after I was diagnosed with pulmonary hypertension (PH). I also didn’t fully appreciate the hurdles that prevent some people…

Finding community among those with heart illnesses

Most of my memories with pulmonary hypertension (PH) can be summarized with three words: shortness of breath. I was always trying to catch my breath anywhere I went. But over time, as predicted, the shortness of breath began to cause other issues. As my pulmonary pressures worsened, my…

We need better access to healthcare in the US

Over the past 19 years, amid the challenges of managing a rare disease called pulmonary hypertension (PH), I’ve had countless encounters with doctors. As I’ve navigated the intricate landscape of chronic kidney disease, anemia, and various other health conditions, keeping track of all the specialists I consult…

Unwavering support: A love letter to my husband

A close friend and I recently discussed how our rare diseases affect our spouses. I have pulmonary hypertension (PH) and she has multiple sclerosis. Our partners provide unwavering love and support as we manage our chronic conditions. Afterward, I reflected on the conversation and on my incredible husband and…


A Conversation With Rare Disease Advocates