CFLF Blog

Media Folder: 
Blog pics

Leveling CF

Champlain Sunset

I believe everything occurs in waves: light, sound, energy, life.  There are ups and downs; good and bad; busy and slow; rested and exhausted; lucrative and struggling; inspired and depressed.  Some waves are bigger than others, and some periods are relatively flat and calm. 

Chronic Love

I suppose, first of all, I should be divulging on how I believe we should all hold ourselves worthy of being loved, no matter what disability we have or have not. We need one another as we decipher this comedy/tragedy where we ALL are dying and, likewise, we all are living, dancing and being.

The Power of Expectations

A few days ago I listened to this great episode of a podcast called Invisibilia. I had seen it pop up a few times on Facebook by friends who had posted about it, so I had opened the link and left it up on my computer for days, waiting for a good time to actually listen to it. Lately my job at the CFLF has been a little intense. We are getting flooded with applications for our recreation grant program, which is amazing, don’t get me wrong, but unfortunately, we're having a hard time meeting the needs financially.

Ask the Athlete

“Boomer Esiason Foundation, how can I help you?” A deep booming voice answers on the second ring.

“Um hi.  Is this Gunnar?”

“I’ll transfer you, whom may I say is calling?”

“Um? Me?  Um yeah, Klyn.  Klyn Elsbury.”  I hate those moments waiting for the transfer when my mind starts to wander.  One of my idols is about to pick up the phone and be my very first interview for my new column, “Ask the Athlete”.  Breathe.  Slow.  Not that slow, you’ll start coughing.

Keep On Keeping On

I remember the first day I realized I was afraid to die. I was in the hospital and my doctor came in to show me an x-ray of my lungs. More importantly a part of my lungs that had collapsed and he didn't think would ever heal again completely. I am sure he said more than that, but that is all that I heard. My mom was there so I just held it all in. Told her it would be okay. Told her I was fine. But I wasn’t.

Beach Walking

I didn’t get to take my first beach walk in 2015 until January 9. For those who live in cold winter climates this would not be unusual. But I am fortunate to live on the California coast and regular beach walking is my salt water “high.”  I missed the ritual New Year’s Day walk as I did not start the year off healthy. I ended up in the hospital on January 2, with flu/pneumonia.  The flu was an unpleasant surprise, as I had gotten a flu shot.  The pneumonia was not, as I have had it more times than I can remember.

A Recipe for Health - Six Realizations

Champs Challenge 2007

1. HOPE - Over a bowl of cereal in 1989; it must have been Lucky Charms. I was 13 years old and in my usual fuzzy state before school listening to the Today Show ramble on about stuff that was just garbled morning mumble to me. "Cystic Fibrosis" was a headline. I perked up. I know that name. Wait, this is relevant. The CF gene had been discovered, mapped, and the Cystic Fibrosis Transmembrane conductance Regulator (CFTR) had been identified - whatever that meant.  This was huge.

Disease Gives Perspective

I recently completed an art project, the CF Art Dexterity Project, where 5 patients of CF were given the chance to have their photo taken and placed in the hallways of St. Joseph’s Hospital in Denver, CO. The Cystic Fibrosis Art Dexterity Project was created to encourage exercise for CF patients and to address the need for connective art in the hospital hallways. Walking around the halls and viewing the portraits becomes a way to bring patients into the “outside” world within the hospital walls and to create a community.

How to Survive Winter with Cystic Fibrosis

After almost 31 years of New England winters I feel like it's safe to say I've learned a thing or two about how to make it through the cold months in (mostly) one piece.  Having Cystic Fibrosis means being susceptible to getting every cold/cough/flu/etc. that comes within arms reach, and living in a place that has a very long, cold winter it can often be hard to not get sick at some point.  The last few weeks in Vermont the weather has been brutal, to say the least.  And even after all the years of equally brutal winters I'm still never really ready for it.

Interview with a Bestie

I first met Hannah (aka Papercut) in 2008, when she was the new team member to our college’s ambassador program.  Immediately, we didn’t like each other.  We were both hot, both dancers, both incredibly modest.   When we signed up to give tours to prospective students, we tried to track which ones later enrolled in the school and who was the better guide.   Our competitive nature reached a new peak when I found out she actually kissed the one guy in the school I had a huge crush on! 

Pages

Support CFLF