How does a person with a chronic, progressive lung disease of unknown origin live their best life? How do they continue to live their best life in a pandemic? In the days immediately following my diagnosis in January 2017, I made a couple key decisions about my relationship with…
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In times of hardship, I’ve found nothing to be more valuable than human connection. After I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a life-threatening and debilitating lung disease, it felt as though no one could relate. That changed when I started talking with other IPF patients. Sharing…
During an appointment at my clinic shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis a few years ago, I had a conversation with my pulmonologist about clinical trials. That discussion led to my personal commitment to support research as much as possible. The conversation ended with a simple…
One of the unique challenges of living with an invisible illness is figuring out how to tell others. Although I’ve lived with idiopathic pulmonary fibrosis (IPF) for five years, it’s still not easy for me to disclose my condition. Most people wouldn’t know that this life-threatening and relentless disease has…
I’ve found myself daydreaming lately about a return to normal. I long for the days when we didn’t need face masks, when I could see someone’s smile during a conversation, and when hand sanitizer wasn’t the most frequent smell I encountered. Most people who know me would describe me as…
I have several roles here at Bionews, the parent company that publishes Pulmonary Fibrosis News and other rare disease websites. I started with this humble column and eventually joined the forums team as a co-moderator. My most recently acquired title is “columns lead,” in which I manage and mentor…
As we approach year three of the COVID-19 pandemic, I am tired. I’m sure we all are. This pandemic fatigue, combined with the January blues, makes it a difficult time of year for many, and leaves the world feeling heavy and dark. While there is no immediate fix, being…
My plan for the holidays was to binge-watch all the Rocky movies. I love this character as played by Sylvester Stallone, and I can relate to how much he struggles to find his way through what life has thrown at him. I particularly identify…
“Every day is a new adventure!” This is often my response when someone asks how I’m doing. It also seems appropriate when looking forward to what 2022 may hold for me. I faithfully use my calendar to keep track of many tasks, both professional and personal. Before I was…
I thought I understood the role of a caregiver. It was based on what I learned and observed watching others. It turns out I did not fully appreciate the role until I had a caregiver. The role of the caregiver is not a single responsibility, but a collection of…
