The day my children entered the world I felt responsible for their future path in life. As they have grown, I’ve helped them learn age-appropriate skills to hopefully enable them to be independent, successful adults. Like most parents, I teach my kids the basics, such as how to walk, use…
Columns
Last year, we had a big health scare in our family — but for the first time, it wasn’t about me and my cystic fibrosis (CF). My mom was diagnosed with lung cancer. It was found early and by accident. She had a face and neck CT scan done…
One of the “pleasantries” of life with cystic fibrosis (CF) is navigating cystic fibrosis-related diabetes (CFRD). I’ve been periodically dealing with it since the summer of 2007. For the last two and a half years, though, it’s stayed with me like an unwanted memento. As I…
Born with cystic fibrosis (CF), I’ve been told my whole life that there’s a number on my head. I’ve written about my beef with life expectancy before, but to sum it up quickly, thinking about death and dying is normal for me. Mortality is a common topic of…
Imagine getting a $2.5 million hospital bill within days of putting in notice to quit your full-time job. That was the exact scenario I faced in February 2019. At that time, my daughter, Claire, had just been born with cystic fibrosis (CF) and spent 68 days in the hospital.
In my last column, I wrote about the psychological aspect of living with cystic fibrosis (CF) that I dislike the most: the focus on shortened life expectancy. This week, I want to offer more of an optimistic outlook, as I try to find balance in all things.
For a long time, the relationship between romantic love and disability was complicated for me. It’s taken time to heal from my traumatic experiences with dating. I honestly didn’t know what romantic love was until I met my fiance, Christopher. Because of my chronic health conditions, I was led…
Even though I already had one child when my daughter, Claire, was born, her birth was a pivotal moment in my life. I wasn’t just a mom anymore; I was a cystic fibrosis (CF) mom. With that title comes a lot of responsibility and weight. For me, it also…
I sat at the head of the table in my workplace conference room and looked out the window, trying to grasp what I needed to do during my break. The problem was, I couldn’t remember. Instead, I just kept looking out the window as Pixies’ “Where Is My…
For many years, I’ve had to endure the ongoing praise for life-changing cystic fibrosis (CF) medications. Let me explain. CFTR modulators like the most recently approved drug Trikafta (elexacaftor/tezacaftor/ivacaftor) have completely changed the way that many patients address the chronic challenges of CF. I’ve watched…
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Recent Posts
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