CFLF Blog

When Life Breaks Down into Pieces

Guatemala Flag w logo

I first learned about the dire situation of cystic fibrosis (CF) in Guatemala when Dr. Andrew Colin of the University of Miami asked the South Florida collaboration of CF centers to include the article below in the quarterly patient newsletter. This situation struck me as painful and scary to even consider a life in which common treatments of CF could not be accessed for financial or other reasons. The fact that so few patients ever live past the age of 18 is just horrific in a world where such advanced treatments exist just beyond the geographic horizon.

What I Weigh

Have you heard about the “I Weigh” movement? It’s something new on Instagram that allows people to showcase how they are so much more than their bodies. Celebrities and regular people alike are rapidly joining the movement to spread the message of self-worth, positivity, and inner strength. 

As a thirty-eight-year-old mom living in suburban Indiana, I’m kind of digging this more inclusive form of self-definition. 

It Depends

As a community we often don’t talk about the language we use in approaching cystic fibrosis, and perhaps it’s only a miniscule detail in the midst of more demanding things. However, I do know that our use of language reflects our values and helps shape the way we think, and vice versa. With this is mind, perhaps this facet of our lives merits a little more attention and thought. In particular, I’ve found myself a torn between the pronouns I and we. For example, is it we have clinic this Tuesday or is it Luisa has clinic this tuesday

Flip The Switch

Watch your thoughts for they become words. Watch your words for they become actions. Watch your actions for they become…habits. Watch your habits, for they become your character. And watch your character, for it becomes your destiny! What we think we become. – Margaret Thatcher

If we perceived thoughts like seeds, we would think differently. It is often the case that we are led to believe we can’t choose what we think about. Oh, all these thoughts running rampant through our heads… the stories we create… the ones that produce added panic and throw us into a funk.

Joy In The Journey

Two years ago I wrote a blog about Aging with CF, that was the year I turned seventy (70) years; a milestone birthday for anyone. Who would have guessed I would still be here two years later at 72 years and enjoying an active lifestyle. As I write this blog we are having record breaking heat in California even on the coast.

Community

Having Cystic Fibrosis can often be isolating. It’s hard to schedule and follow through with plans when you never know what your symptoms will be. But it’s so important to try, you have to put yourself out there and hope for the best. Life is too short to live in fear of the unknown. Take a chance, even if you have to cancel! Don’t let your chronic illness define you. You are so much more than a broken link in the genetic code.

10 Years At The Registration Table

During my college days I worked as a banquet server at one of the big hotel and conference centers in Burlington, Vermont. Our banquet team had so much fun working all those weddings and special events together, which is how I met and became friends with Brian Callanan. Brian was in graduate school at St. Michael’s College at the time and I was finishing school at the University of Vermont. We definitely kicked off a great friendship from those days. Our paths continued to cross when we both worked in social services helping families living in poverty.

How Do You Stay Motivated To Workout?

I want to address a question I get asked all the time by this wonderful community. This question has popped up in my social media messages and my inbox quite a bit lately as I’ve been sharing more about getting back into a more consistent workout routine.

You vs. Cystic Fibrosis: What Drives You To Fight

Cystic Fibrosis is a relentless disease. Every day with Cystic Fibrosis is a fight. Every day you enter the ring with your opponent, it’s the exact same opponent that knocked you out the day before. You know your opponent very well, you’ve been facing each other for years. You go toe to toe, sometimes for several rounds. Once in a while you think you may have the upper hand but your opponent is sneaky and tends to get you out of nowhere. You start to slip up, the punches are coming at all angles, blow after blow. You know you’re in trouble. You go down. The whistle blows.

Boys And Girls Of Summer

It’s Memorial Day weekend, and our family is more than ready to usher in the start to summer.  School is out, the pool is open, and the grills are fired up.  It’s time to bring on the s’mores, the sprinklers, and all the fun this season brings.

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