CFLF Blog

Blood Sugar Balance

Many of us with CF also have a diagnosis of CF related diabetes or deal with irregular blood sugars, so I felt compelled to share some ways we can help regulate or balance our blood sugars through nutrition and lifestyle choices.

When I Grow Up

Dr. Denning - Breathe Deep NJ 2011

In 1995, when I was 19 years old, I received some of the most upsetting news of my life.  Dr. Carolyn Denning, the doctor who had diagnosed my brother and I with Cystic Fibrosis in 1974 and 1976 announced her retirement.  While Dr. Denning was like a surrogate mother to me in her treating and care of this disease I was only starting to more fully understand, I knew that she had not only my complete trust, but also the trust of my parents in caring for the two of us.

How to talk about CF so people will listen, and listen so people will talk (about CF)

I’m sure there are other people out there who can relate to the story I’m about to tell. To some it’s all too familiar and in my case it seems to happen a lot because of the work I do at the CFLF. So it goes… I meet someone for the first time, they ask what I do, I tell them I work for the Cystic Fibrosis Lifestyle Foundation and then from hearing the words “cystic fibrosis” they tell me about a friend of a friend, or a distant relative, or someone they knew in college, or their wife’s best friend’s cousin who has (or had CF) and just what an awful disease it is.

The Nature of Broken

“The world breaks everyone, and afterward, some are strong at the broken places.”
-Ernest Hemingway

Notes on a Beat-Up Monkey and Miracles

It’s been three full months since I’ve been sick. This is the longest I have not been hospitalized or on IV antibiotics in two years. I’m learning something each and everyday because its taken more than a lot of patience and more than a lot of rest. I still get up every morning and chase my dreams, the sun and the moon. But some mornings I sleep in. I don’t always see the sunrise. Because that’s how it needs to be right now. However, on those days that I don’t get to see the sunrise, I do see the sunset.

The Gift Of Hope

When I was in elementary school I started wishing for a cure for CF. Each year when I blew out my birthday candles that’s the wish I made. I wished out of curiosity. I wished because I didn't like being different. I wished because it seemed like other people wished I didn't have CF. And then after my 18th birthday I didn't wish anymore.

Tis the Season...for germs.

I love this time of year and the spirit of the holidays that comes with it, however, I don’t like the colds, flus, pneumonias and other sicknesses that spike during this time of year. Especially because they seem to hit our community SO hard. With that said, I wanted to share some natural prevention tips as well as some tips for when you do find yourself down with something.

 

Making A List

The holiday season is upon us and we are all busy with holiday parties, gift shopping, and decorating our homes. Keeping up with CF treatments can be more challenging with a hectic schedule.  As an older CF adult I am coming upon my 69th Christmas.  I have been sick for some Christmas holidays but somehow rallied through them and made it to the next year.

What Is It Like To Be A Partner Of Someone With CF?

Marissa Brian at Beach

I met my girlfriend, Marissa, online in early 2013.  There was a certain unique and immediate comfort in communicating through email, chat and eventually phone right from the beginning.  Before we even met for the first time in person our lives became intimately connected.  After our first attempt at getting together to meet in person got postponed, I had to leave to go to New Jersey for the death of my second oldest brother.

Laying The Groundwork

Four weeks ago while recovering from sinus surgery in the hospital, the foundation for my new house was being poured. Almost a year ago my fiancé, Scott, and I decided we wanted to build a house. My parents offered us some land on their property and we of course took them up on it. After LOTS and LOTS of paperwork we finally got a construction loan to build the house. The plan is to have the house up and closed in before the first big snow so we can continue working on it through the winter. So far we’ve been lucky with the weather and the house is almost closed in.

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