CFLF Blog

Ventura Sunset - 2018

As the sun set on 2018, I reflected on what a good year it had been. I was in good health for the year with no hospitalizations. Here I am at seventy-two (72) years old and maintaining my active lifestyle: swimming laps, golfing, regular walking and yoga. It is not always easy to be compliant with daily treatments for CF but I am consistent and I am still here. I have had the benefit of Vertex, Kalydeco (Ivacaftor) for three years and what a difference it has made.

Lessons In CF Related Arthritis

We all know having CF is hard, for many different reasons. Physically, one of the most difficult aspects of having CF for me is joint pain.

It’s been more difficult than the two major back surgeries I had and even more intense the time I had to have the hole for me feeding tube reopened with no anesthetic, nothing to numb the area, and nothing for the pain. But that’s a story for another day, a rather interesting and wild one!

The Best Gift of All

It’s December 23rd, and I’m watching the Christmas lights twinkle on the tree.  We were going to get a real one until we remembered last year’s adventure, what with the tree nearly careening off the car into oncoming traffic four or fifteen times.  No, this year, we went with the old standby.  An artificial beauty that was efficiently pre-lit until the cat scaled the tree and gnawed every cord.  Still she stands, elegantly hoisting the dainty pre-kids ceramic ornaments just out of grabbing distance.  Her lower extremities hang low with hand-made treasures from our eight-year-old son and fiv

Knock Out CF- San Diego

I remember very clearly, to the day, when the Cystic Fibrosis Lifestyle Foundation saved my life.

I was visiting my family in Dallas, TX and they were out to get groceries while I stayed behind.

My wheelchair, was in the corner of the apartment. My medications littering the kitchen table, cupboards, and counters.

Faith in Humanity

In spite of everything, I still believe that people are really good at heart. – Anne Frank.

Everybody Fights

Fight banner

Next week the CFLF will hold it’s fourth annual KnockOut CF - Boston event at George Foreman III’s gym, Everybody Fights (formerly named The Club).

Pitty-Pats and PowerPoints: Five Years of CF Parenting

The other day, my five-year-old daughter and I found ourselves doing the pitty-pats, of all things. She was in day one of a nasty respiratory infection and said that the pressure of the vest was hurting her. So I fished out the old pastel pink and blue percussors from her memory box and brought them down to the couch. For the next fifteen minutes, I gently tapped on my daughter’s coughing body as I told her stories of the pitty-pat days gone by. 

Stop Apologizing

Dear Self,
Stop apologizing for being sick. Stop apologizing for the coughs that you can’t control. Stop apologizing to waiters for the strict diet you follow so you can maintain as much health as possible. Stop apologizing for the missed appointments and canceled plans. You can’t control these things, and they don’t make you any less of a person.

Something Good Coming

I’ve recently been looking back at where technology was when I was first diagnosed with CF Related Diabetes (CFRD) in middle school. I likely had diabetes for a solid year before actually getting diagnosed. It wasn’t until after I had diabetes that I could then pinpoint and match the symptoms of what I had been feeling for the majority of 6th grade. I had constant headaches, was moody, didn’t want to do anything active, always sleeping and had blurred vision but I was told that was all puberty. At one point in 7th grade, I was put on a steroid called prednisone for a lung infection.

Showing Up Without Fail

Every year on the last weekend in July in small town Bristol Vermont, a group of people gather. They show up, for hours, days, some of them weeks, and, a few of them year round. Often new people show up, but every year the core people return, making the boat float. They come to sweat, in god awful heat and humidity. They come with rain jackets for the annual rain storm that always shows up, just like them-without fail. They carry boxes, tables and tent parts. They sort through clothes, home items and sporting goods.

Pages

Support CFLF