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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.

COVID-19 and the CF Community

We realize this is an unprecedented time in our nation, and across the world, as we face a pandemic which greatly affects so many people, those with Cystic Fibrosis are one of the most vulnerable. For people with CF, every precaution should be taken to reduce exposure and help prevent infection.

Bionic CF Warrior

Bionic is derived from the Greek root word “bios," which means life.

So, how many transplants does it take for someone to be considered a bionic woman?

Rae is the name of this Cystic Fibrosis Warrior. This bionic woman. This Bionic Cystic Fibrosis Warrior.

The Power of Support

It was October 2013, and her name was Diane. There she sat in the basement of our local children’s hospital – drenched in a fluorescent glow and clutching a stale submarine sandwich. Her hair was cut into the pointiest of pixies, and her scarf had found that magical balance between perfectly styled and casually draped.

A Journey to the Arch of CF Warrior Hope, Strength, and Perseverance

I was in the middle of traveling when I received a message asking if I was in the St. Louis, Missouri area. My original intent had been to only visit a dear Cystic Fibrosis Warrior friend in Indiana and drive back to Texas the following day. However, in this instance it did not matter that I was on my way to spend the night at a hotel in Tennessee. When Miranda Hutson contacted me about a potential lunch with her in a state from which I was expecting to soon exit along Interstate 55, I made the instantaneous decision to alter my plans.

A New Challenge To Access

Challenge to Access

Life with cystic fibrosis (CF) can often feel like climbing a mountain that never ends. It is a lifetime of uphill challenges, which can vary in intensity. Sometimes the climb is very steep and difficult just to hang on. Other times the incline is less, and maintaining health is more manageable. The newer medications on the market don't necessarily take away the mountain, but they do help us to be better equipped for the challenges ahead!

The long road to Trikafta

The CFTR modulator program began in 2000. This was the biggest breakthrough for CF since the CF gene was discovered in 1989. There was excitement and real hope that researchers were finally able to understand the genetic disease and the underlying cause of it.

3,296 miles of inspiration. That was the journey.

You can not know someone through a relationship built from texts. Through messaging. From being friends on social media. You need to meet them. Hear their voice. Talk to them. This was my quest last week when I set out on a travel.

There were three fellow folks with Cystic Fibrosis who I wanted to meet. They are Warriors. I had known all three in one way or another for several years via Facebook. Facebook was not enough. I had to sit face to face with them over a lunch to hear their stories. And I did.

Reel Talk

It’s easy to fall victim to the comparison trap. We live in an age where digital interaction is more common than face to face. It’s an unfortunate truth that we hold the pretty, unadulterated parts of people’s lives that are portrayed on social media in such high esteem, completely negating the lack of human relatability factor or rather the necessity for it.


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