CFLF Blog

The Hands That Hold Us

In November of 2007, when I was 24, I went into the hospital for the first time with a bad case of pneumonia.  It was one of the biggest (if not THE biggest) wake up call I’d ever had.  I hadn’t thought about how much that first hospitalization affected me until I did the interview with my parents

Bags Packed Because I'm Coming Home

Here I am on day two waiting for a bed while sitting in the ER.

Thanksgiving in Yosemite

It is by far the grandest of all special temples of Nature I was ever permitted to enter. – John Muir

Running Against The Wind

“I began to find myself searchin'- Searchin' for shelter again and again- Against the wind.”

-Bob Seger

 

Thanks to the CF Lifestyle Foundation, I’ve been given the awesome opportunity to participate in the San Diego Triathlon, the Malibu Half Marathon, and the upcoming LA Marathon.

Sailing, CF and Windward Headway

Sailing banner

When I was in sixth grade my oldest brother, Billy, introduced me to sailing for the first time. He was relocated for work in Miami, and we went out on Biscayne Bay in his 22-foot boat for an afternoon. The warm turquoise blue waters, the heat of the sun, the wind splashing the waves – I was hooked. Little did we know at the time, that the particles of salt I was also inhaling were also doing me good.

Mermaids, Novelty and the Origin of CF

You don’t believe in Mermaids you say? Well, start believing. I once was one. My father runs the underworld and my mother is the queen. Mermaids are rare, almost extinct these days. As hyper social beings, I’ll have you know that it is hard finding companionship in the ocean. I would swim for days on end sometimes only hearing the sound of passing minnows constantly fleeing for their lives. What a way to live, always in fear. I would hear the occasional whale singing tales of love, hope and beauty.

Anything is Possible: An Interview with my parents on life, family, and raising a child with Cystic Fibrosis

Last week I drove out to my parent’s house, the house that I grew up in, and sat down with them, at the table where we'd had hundreds and hundreds of dinners and conversations as a family, and interviewed them about what it was like to have a child with CF.  Even though I had always felt like my family was very open, and not afraid to talk about anything, it was really the first time we'd had a conversation about my CF, as adults.

Living In A Dream

Someone once wrote, “What screws us up most in life is the picture in our heads of how life is suppose to be.”  From the moment I read that, it resonated throughout my core.

Climb Every Mountain

I was fortunate to take a 2-week trip in September to Germany and Austria. I stayed healthy the entire trip. Yeah! Traveling with my husband, Rich, we toured Bavaria and the Tyrol Alps region of Austria.

Piglet vs. Pooh: Surviving or Thriving with CF

Pooh Header

“Problems, be they economical, ecological, or whatever, are caused by a failure to see What’s There.  Unpleasant feelings come from illusions:  fear from What Might Be (which hasn’t happened yet), sadness from What Might Have Been (which is not necessarily what would have been), and so on. Piglets, living in fear of What’s Coming Next, What Can Go Wrong, What If I Do Something Foolish, and such, cannot enjoy and make the most of the present moment. Later, they look back and realize they didn’t live it.” (Hoff, B.

Pages

Support CFLF