“Up, up, up!” my 1-year-old said to me the other day with both hands reaching to the sky. I was having a really bad day, and I was tired and achy from long coughing attacks and chronic pain. “Mommy can’t right now, buddy,” I said. The letdown on his face…
Dear “How are you feeling?” folks, Those of us with a chronic illness hear repeatedly — and secretly dread — questions such as the following: “How are you feeling? How have you been doing? Are you feeling any better? Are you hanging in there?” We try to smile and reply…
It’s true that having a partner in life can be a gift. Sharing the celebrations and sorrows makes life sweeter, especially when you’re living with CF. However, many people with CF struggle with the guilt of asking someone to tackle CF life alongside them. A relationship that includes CF almost…
It’s that time of year when we sit around our tables with carved turkeys, mashed potatoes, and a healthy dose of gratitude in honor of Thanksgiving. Sometimes I struggle to feel grateful. While gratitude may not come easily, the behavior can be learned and reinforced by making it part of…
The trailer for “Five Feet Apart,” the spring 2019 film about two people with cystic fibrosis (CF) falling in love despite cross-infection guidelines, dropped on social media this month. Like every other person with CF, I clicked on the trailer eager to see what my disease looks like…
With the dreaded cold and flu season upon us, my household is gearing up to protect ourselves and avoid sickness as much as possible. Everyone with cystic fibrosis is aware of how a simple cold or flu can evolve into a much more serious problem with lasting consequences. We all…
The passionate outpouring following Claire Wineland’s devastating passing last week has exemplified the influence she had on her friends and family, the cystic fibrosis community, and the millions of strangers she inspired. She was incredibly loved and admired — that was so very apparent. I’m sure you can agree…
This weekend, my son, wearing a tiny crown and old man suspenders, blew out the candle on his birthday cake. It was beyond adorable and tugged at my mama-heart in the saddest way. The blown-out candles marked the end of my first year as a parent. As I’ve written before,…
Cystic fibrosis requires a complex and time-consuming treatment plan beyond what many other chronic illnesses require. It’s important to identify the barriers to treatment adherence and find practical ways to address the issues. Forgetfulness We have all been there, the perplexing pause followed by the blank stare directed at the…
Happy World Breastfeeding Week! That’s right, in this column we are talking about breasts and the wonderful thing they can do: feed tiny humans. I want to dive into the reasons to breastfeed and how cystic fibrosis plays a role in the choice of whether or not to breastfeed.
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