Learning how to balance personal tasks with my health needs has been a difficult lesson since my diagnosis of idiopathic pulmonary fibrosis (IPF). It’s something I have not yet mastered. Previously, I sought recommendations from my healthcare team about how to do this better. They encouraged me to think of…
Columns
Last week was Global Tracheostomy Tube Awareness Week. The mother of a child with complex health challenges started it. Her goals were to educate people and normalize her daughter’s trach. While Trach Week focuses on the use of a trach as a long-term treatment, it got me thinking about my…
I am taking a deep breath as I announce to my beloved online community the following: I have COVID-19. I also have idiopathic pulmonary fibrosis (IPF). Until now, I thought this combination would be fatal, but I am here to tell you that this isn’t necessarily true. I’m a fairly…
Dear Christie, It’s 10 p.m., Dec. 26th, 2018. You just got this crazy phone call from Mom. She told you that her disease — which you still don’t know the name of — has a “cure.” You knew she…
As a young adult living with a chronic lung disease, I’ve heard horror stories of general physicians (GP) and specialists failing to listen to their patients. In the rare disease community, this is a common complaint by patients, and many of us wind up supporting one another when frustration boils…
Last weekend, my column turned 1! There were only a few weeks in the past year that I did not write a post for Pulmonary Fibrosis News. This means that I have had about 50 opportunities to share my family’s story with the world. I have tried to…
Most of my friends and family members would say I am an open book about my chronic illness. After the initial shock wore off from being diagnosed with a life-threatening lung disease at 28, I decided to share my story through writing. Serena Lawrence, the late senior managing columns…
This past week, I felt things. Like, I really, finally felt things. They were real feelings, not forced, and came without judgment. It’s been longer than I want to admit since I have experienced any emotion without it being tainted by anxious judgment. I have written many columns…
Self-isolation has become a form of survival for those with pulmonary fibrosis during the COVID-19 pandemic. I am a single-lung transplant recipient and have a compromised immune system. COVID-19 can devastate a perfectly healthy person, and someone with my current state of health is at even greater risk. The self-isolation…
I can’t recall how many weeks we’ve been enduring physical distancing unless I actually sit down to think about it. The days seem to blur together, and the time at home seems similar today to what it was yesterday, and to the days before that. However, if this is…
