CFLF Blog

Carving Mountains

“Eventually, all things merge into one, and a river runs through it.” – Norman McLean


We planned on a modest hike, roughly 900 feet in elevation to the top of a ridge where we were promised a scenic waterfall. Except, by this time of year, there’s no guarantee the waterfall will be roaring.

The sticky heat caused beads of sweat to run down my chest and back, as I puffed on my albuterol. I blocked the pain in my muscles as I forced myself to slow my breathing, regulating my heart rate while I checked my bag for salt tabs.

Memorial Day Birthday

Here I am living with CF and writing this blog as I am about to turn 74 years old. I was born on Memorial Day - May 30th. For many years of my life, I celebrated my birthday with the day off from school or work, often with a family picnic. Now Memorial Day is on the fourth Monday of May and I usually have to wait a few days to celebrate the birthday.

STROLO Star: Bree Labiak

“I've learned life is a lot like surfing. When you get caught in the impact zone, you need to get right back up, because you never know what's over the next wave... and if you have faith, anything is possible, anything at all.” - Bethany Hamilton

Keys to a CF Life

How do you know that you’ve stayed too long for lunch? When the waitress presents you with the same, identical tab, twice.

The conversation, which had been fostered from various years of Facebook followings and interactions between me and Cystic Fibrosis Warrior Stephanie Santana, led to that overstay at an eatery near her town in the Florida Keys. I had admired Stephanie over time for her personality, her talent, her tenacity, and her zest for being unique. 

Easy Spring Pasta

There are two kinds of people, those who love pasta, and those who are wrong. Okay, okay, I know not everyone loves pasta, and that’s okay, I just don’t understand it!

This pasta dish has been a favorite of ours for the past couple of years, we enjoy it best outside on the patio when the weather is just right.

Feel free to customize this dish to make it your own and fit your tastes!

The Kids Are All Right: How My Kids Taught Me Resilience in the Age of COVID-19

It’s been thirty-eight days since my family has ventured out of the neighborhood. Thirty-eight days since the kids have shot hoops with their friends. Thirty-eight days since they’ve played catch, colored the sidewalk, or done anything with anyone even remotely their age. Thirty-eight days of Mom’s non-award-winning cooking, Dad’s mildly successful attempts at sibling mediation, and the keen knowledge that anyone approaching our end of the cul-de-sac is to be avoided at all costs.

Three Points in a Star

I view the process of any transplant as a miracle. Particularly a lung transplant. Perhaps it is because I underwent such a course. It is due to that procedure, I am still here. 

Perhaps it is because I know of others who have had lung transplants. It is due to that procedure, they are still here.

And perhaps it is because I know of others who did not have lung transplants. It is due to the absence of that procedure, they are no longer here.

Putting life on pause for COVID-19

We are months into the COVID-19 outbreak in the United States and we are all experiencing a range of emotions. Everyone’s experiences, emotions and thoughts are unique to their own situation. I’ve found myself to be weirdly prepared for this situation. No, I’m not a paranoid doomsday prepper but because having CF for 26 years has, in a way, trained me for this lifestyle change that we are all facing together.

Protecting Our Healthcare Heroes

For those of us with chronic illnesses such as cystic fibrosis, our experiences with healthcare providers are different than the typical professional relationship. Inpatient for weeks at a time, sometimes months; the hospital becomes a second home. Various staff sit with us in our pain, wipe our tears (or our butts), and bring laughter to our chaotic situations. These people are our family.

Love in the time of Corona

A few weeks ago the world shifted. In reality it had already been shifting for months, as the first case of coronavirus was reported on November 17th, 2019, in China. It would be months before people, myself included, understood the seriousness of it though, worldwide. But on November 17th while that was happening on the otherside of the world, we were celebrating my son’s second birthday. For the next three and a half months life went on as usual.

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