I write a lot about the importance of person-first language and illuminating the identities that make me who I am. I often point out that my diagnosis of idiopathic pulmonary fibrosis (IPF) is just one part of me. In narrative therapy, we call these our preferred identities, a…
Columns
A Yiddish proverb states, “When a father gives to his son, both laugh; when a son gives to his father, both cry.” This is true when giving gifts of time, energy, and love, as in caregiving. A parent caring for a child is an act of…
Many Pulmonary Fibrosis News readers know that during the last few months, I have had several acute illnesses. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I ended up quite sick as a result. Since mid-November, I have been recovering from pneumonia, influenza A, strep…
Last week I wrote a column about energy expenditures and how I choose where to invest my energy in the multiple tasks vying for my attention. Unfortunately, since being diagnosed with idiopathic pulmonary fibrosis (IPF) four years ago, I just can’t give everything the energy I’d like. As a…
When I recall the times that loved ones were in the hospital for extended periods, I can still feel the energy of the waiting rooms. ICU waiting rooms have a particular hum about them, a palpable tension created by people in limbo, including those often too stressed to…
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…
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…
