CFLF Blog

Pitty-Pats and PowerPoints: Five Years of CF Parenting

The other day, my five-year-old daughter and I found ourselves doing the pitty-pats, of all things. She was in day one of a nasty respiratory infection and said that the pressure of the vest was hurting her. So I fished out the old pastel pink and blue percussors from her memory box and brought them down to the couch. For the next fifteen minutes, I gently tapped on my daughter’s coughing body as I told her stories of the pitty-pat days gone by. 

Stop Apologizing

Dear Self,
Stop apologizing for being sick. Stop apologizing for the coughs that you can’t control. Stop apologizing to waiters for the strict diet you follow so you can maintain as much health as possible. Stop apologizing for the missed appointments and canceled plans. You can’t control these things, and they don’t make you any less of a person.

Something Good Coming

I’ve recently been looking back at where technology was when I was first diagnosed with CF Related Diabetes (CFRD) in middle school. I likely had diabetes for a solid year before actually getting diagnosed. It wasn’t until after I had diabetes that I could then pinpoint and match the symptoms of what I had been feeling for the majority of 6th grade. I had constant headaches, was moody, didn’t want to do anything active, always sleeping and had blurred vision but I was told that was all puberty. At one point in 7th grade, I was put on a steroid called prednisone for a lung infection.

Showing Up Without Fail

Every year on the last weekend in July in small town Bristol Vermont, a group of people gather. They show up, for hours, days, some of them weeks, and, a few of them year round. Often new people show up, but every year the core people return, making the boat float. They come to sweat, in god awful heat and humidity. They come with rain jackets for the annual rain storm that always shows up, just like them-without fail. They carry boxes, tables and tent parts. They sort through clothes, home items and sporting goods.

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.

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