During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead. Caregivers, whether working alone or as part of a team,…
Columns
Teaching has been a passion of mine since I earned my masters degree in sociology from the University of Houston-Clear Lake (UHCL) in 2013. Becoming a college professor gave me a sense of self-worth. I was proud of my accomplishments, especially since I obtained my degree so late in…
Is 90% of a message’s effectiveness dependent upon the way it is delivered? In terms of our rare disease, how important are the words we use to describe it? Many of us with a rare disease only learned about it when we were diagnosed, so we shouldn’t be surprised…
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…
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…
