CFLF Blog

Nutrition and CF

For most of my life I’ve consumed the typical ‘CF diet’. You know the one, the one high in processed foods, fast foods, junk foods, high calorie food like products. There was a time in my life when lunch consisted of a bag of Dorito’s, a bottle of Coke, a Whatchamacallit, and a cheese roll the size of my head from the school cafeteria. For years my goal was just to consume as many calories as possible to help keep the weight on. Yet, I still struggled. I had a feeding tube placed when I was in the fourth grade and that sucker stuck around until I graduated high school.

When you’re doing everything, and it’s still not enough

Even after 31 years with CF I still catch myself getting into those ruts when I’m sick.  You wonder what you’re doing all this for, if it’s not going to keep you healthy.  And it always seems to happen at the time when you least expect it.  I had been feeling really good, and it was finally warm enough to get outside.  I’d been running everyday and feeling really healthy and positive.  And then BOOM.  I went for a run one afternoon and when I got home I felt like I had no energy at all.  Even taking a shower felt too extraneous.

Video Blog: A Day in the Life of CF: Episode 1

Here is my first video documentation of a day in the life of. I apologize for the shakiness of the camera and the holes in the continuity, but it’s my first time. And I am bound to get better! The purpose of these is to show what cystic fibrosis patients deal with day in and out because a lot of what we do to take care of ourselves is behind closed doors.

CF vs Everest

Hi my name's Nick, I'm a CFer in my late 30s. I'm based in London, but am a director of a global business, which means I get to travel a fair bit including to the US which is always one of my favourite destinations. I am lucky. Apart from a couple of near death experiences as a child, it has been possible for me to generally keep my health stable.

Ask the Athlete- Chris Kvam

This week I was incredibly fortunate to chat with Chris Kvam, an accomplished attorney, devoted husband, motivated athlete, and a fellow committee member of the Cystic Fibrosis Lifestyle Foundation. As if that wasn't enough, he also has Cystic Fibrosis. Although we are all familiar with the battles of this disease, his outlook is refreshing. 
 

Clouds

On my March 1st beach walk in Ventura, California I was enchanted by the clouds above the hills and beyond. Ventura doesn’t usually have such clouds. As I walked and thought about the clouds I couldn’t help but think of clouds in terms of life. The song, Both Sides Now[i] echoed my thoughts. I really don't know clouds at all.

All He Ever Needed to Know, he Learned at Summer Camp

Cystic Fibrosis is a genetic disease that is often detected in early childhood or even sooner. And for most CF'ers, they’ll say that the therapy and medications are all they’ve ever known. Dealing with enzymes, airway clearance therapy, nebulizers and frequent doctor appointments is just a normal part of their daily life.

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.

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