Why I Sobbed Registering My Son For KindergartenI do a lot of self-reflection humbly standing at my kitchen sink. Lost in the mundane task of dishwashing, I find it easy to process through my emotions–sloshing, scrubbing, and...reactionscomments
How I Am Sleeping Through the Trikafta InsomniaSleeping has been a great difficulty since starting Trikafta. I am not alone, the Trikafta tribe are pretty much all in agreement on this one. Those peachy pills do not like...reactionscomments
CF and Partner PTSDBeing a partner to someone who has cystic fibrosis (CF) can be hard. It can be exhausting, scary, and confusing. As someone with CF who has a partner, my husband...reactionscomments
CF and VeganismAn essential part of staying healthy with CF is the diet. Often CF patients are told to include high-fat, high-calorie foods. In my experience, this was due to the probability...reactionscomments
Five Actions That Get in the Way of My AppetiteFor the first time, many people with CF have been able to focus less on gaining and maintaining weight and more on living life. Finally, they can eat a normal...reactionscomments
Feelings of Survivor's GuiltI hear a lot about survivor's guilt as a cystic fibrosis (CF) patient. I’ve had moments in my life I feel it creeping up when others talk about struggles with...reactions4comments
Family DynamicsFamilies have many dynamics. There is a dynamic between the parents and children. The children in a family have their own dynamic. And the parents have their own dynamic, too...reactions3comments
Creating A CF Exercise Regime That FitsWe all hear the physios harp on about exercise but sometimes it can be daunting thinking about where to start. It took me many years and the breakthrough of modulator...reactionscomments
What it Feels Like to Be in the Transitional GenerationA recent article in the New York Times Opinion written by Dr. Daniela J. Lamas, a pulmonologist in Boston, detailed the story of momentous change occurring in the cystic fibrosis...reactionscomments
Understanding Non-apparent Disabilities in the WorkplaceAbout 1 in 4 American adults live with a disability. Many people living with a disability are able to work and do. For those with an invisible disability, the decision...reactionscomments
The Many Colors of Cystic Fibrosis: Orange (Part 1)I love viewing my journey with cystic fibrosis (CF) through the lens of Joseph’s Technicolor Dreamcoat. If you’re unfamiliar with the biblical musical, just know that Joseph is gifted a...reactionscomments
What It Means To Be A CF WarriorSome of the fiercest people I know have CF. The strength, determination and sheer willpower to fight for another breath is formidable. To friends and family who don’t have the...reactionscomments
New CF Medicine StrugglesGetting a new medication prescribed can feel overwhelming. I was prescribed a new medication a few years ago. And this medication had very specific requirements and instructions. One of the...reactionscomments
Is CF A Secret?I have CF. For most of my life, that has been public knowledge. I shared it with people nonchalantly, as I would my favorite food. It was so normalized to...reactionscomments
CF Snacks My Five Year Old LovesI have yet to meet a parent whose child has a perfectly balanced and healthy diet 24/7. Sure, we would love that for our kids, but they also have minds...reactionscomments
My CF Exacerbation Complication: AtelectasisLiving with CF, I know pain–all kinds of different types, locations, and degrees of pain. Pain from lung infections and coughing, abdominal pain or “CF belly” pain, joint pain, and...reactionscomments
My 25-Year Anniversary of CF DiagnosisThe 25th anniversary of my diagnosis. It crept up on me without my noticing. I was on a meeting a week or so ago discussing when we started showing symptoms...reactionscomments
Painsomnia: The Unspoken CF SymptomPainsomnia became more of an issue for me in my twenties when I felt it was a symptom often overlooked by CF doctors. I explicitly remember telling a ward physician...reactionscomments
Getting Triggered By CF Medical TraumaI had cystic fibrosis (CF) exacerbations every other month for many years. The routine was pretty much the same. My doctors would tell me to call them if I felt...reactionscomments
What to Say When Your Friend's Child is Diagnosed with CFFive years ago, when my daughter Caroline was two weeks old, she was diagnosed with cystic fibrosis (CF). Initially, we kept her diagnosis private, only telling close family members. This...reactionscomments
