Dealing with the financial expenses associated with having a rare or chronic illness like pulmonary fibrosis (PF) can be tough. I’m responsible for making sure that I receive all the PF treatments available to me, but I’ve discovered that they come with a hefty price tag. Among the…
Columns
American comedian Bill Engvall is known for his punchline “Here’s your sign,” which he’d often say in response to an outrageously obvious question. I recently experienced two “here’s your sign” moments of my own after wondering if I’d contracted the virus that causes COVID-19. On Monday, April 3, I…
This week, while my husband, Jonny, and I sat at home in isolation after our tests for COVID-19 were positive, I struggled to feel joy. My friend sent me a video of someone singing a popular emo anthem while holding a wet strawberry — its soggy leaves pasted to…
A recurring topic of discussion among the rare disease community is whether people would consider donating an organ. I’ve heard varied comments, such as “No one would want any of my organs,” “My only good organ is my transplanted one, and it cannot be reused,” and “I don’t want to…
I wouldn’t wish the effects of a chronic cough on anyone. The cough that often accompanies idiopathic pulmonary fibrosis (IPF) is dry and persistent. It’s difficult to address and find relief, and it can be exacerbated by several things. That’s been my experience since I was diagnosed…
On Tuesday, Sept. 15, 2020, I received an email asking if I would participate in an exercise on how deceased donor organs are allocated. The opening statement read: “The Organ Procurement and Transplantation Network [OPTN] is developing a more equitable system of allocating deceased donor organs. The new approach, continuous…
My health journey began with a rare illness called lymphocytic interstitial pneumonia (LIP). Coping with the diagnosis was hard, but I knew I could do it. What I didn’t expect was that I’d have to handle several other conditions on top of it. I’ve also been diagnosed…
Writing can be therapeutic. As a therapist, I often encourage my clients to write as a way to process trauma, release emotion from their body, or organize their thoughts ahead of a difficult conversation. Whether they’re writing a letter, column, or journal entry that they plan to share or…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) on Jan. 31, 2017, I quickly understood three things about this disease. First, it’s chronic. Second, it’s progressive, though it progresses at different rates in everyone. Finally, there is no cure. One therapy available for IPF is…
One of the most certain parts of our lives is the order of the calendar. “Thirty days has September,/ April, June, and November,/ All the rest have thirty-one,/ Save February at twenty-eight,/ But leap year, coming once in four,/ February then has one day more.” Some might call this a…
