CFLF Blog

Five Proverbs on Living with CF

Nelson Mandela quote

In the past three months, I have lived through one of the most physically painful periods of my life.  I underwent two back surgeries to repair injuries (herniated disc and compression fracture/bone spurs) from a skiing fall almost 20 years ago. 

At the time of the injury, I almost had to take a medical leave from college due to the immense amount of pain and medication required to treat it.  Three other times I have had to visit the Emergency Room for severe exacerbation, mostly stress induced.

Ask The Doctor

I first met Dr. Richard Belkin in June of 2010. After years of struggling with deteriorating lung issues I finally got a referral to him. He specialized in treating adult CF patients with the Santa Barbara Pulmonary Group in Santa Barbara, CA. I knew I was a CF carrier as I lost a sister to CF in 1971, but I had never been diagnosed with CF. Here I was 64 years old and thinking I might not make it through too many more bouts of pneumonia. Well thanks to Dr. Belkin I am still here and feeling better than I have in 10 (ten) years or more.

5 Reasons to Participate in this year's Champ's Challenge

With the annual Champ’s Challenge less than a month away, we have been discussing on our committee calls how we can boost participation this year. Whether it’s by riding, running, attending the BBQ, volunteering, or just sponsoring a rider/runner, we want to get more people involved and have this year be our most successful year yet.

My fun take on eating with CF

Let me tell you about what I had to eat last night. I began with a personal pizza- fresh dough, buffalo mozzarella and cherry tomatoes. Then I sauntered into a pile of clams and mussels marinara (complete with ample bread for dipping). My main course was two colors of homemade pasta- yellow and green, covered in a delicious puttanesca sauce complete with chunks of tuna, olives and capers. Dessert was tiramisu and a nice cappuccino. Everything was heavenly. I also took some samples of my wife's ravioli. But she didn't want my aggressive fork near her dish so I backed off.

Gut Bugs: The bad and the good.

A life with cystic fibrosis means a life with antibiotics. In a world where antibiotics are over prescribed for many of us they are absolutely necessary. Many of us are on more than one antibiotic at any given time, whether they be oral, intravenous or inhaled.

Just last month I was on three IV antibiotics, an oral antibiotic and an inhaled antibiotic. They did the trick. My sinuses felt the best they had in over a year and my lung function was the highest it had been in years. But along with the good comes the not so good.

Twelve things you might not know about people with CF, but probably should

I should preface this post by saying that the list I’ve created does NOT pertain to everyone with CF. I’m hoping that there will be a few that others with CF can relate to, but of course all people with (or without) CF are different, so this is just a list I created from things I’ve noticed in my own life and seem like common threads among all of us with CF.

Video Blog II: Denver Days.

Sitting in the hospital bed I am incessantly acknowledging being surrounded by these blank, art deficient walls and this view of the city below me with the brick that is growing out of the ground instead of grass or trees. I have to remind myself of how wonderful life is outside of these walls and why I need to be here, now, to be able to continue to enjoy it. Yes, I am hospitalized with a lung exacerbation and pneumonia in New York.

Sedona Vortex

Spring weather brought a trip to Sedona, AZ to gather with my college roommates from San Jose State University. Yes, we are all still hanging in here and enjoy getting together and being outdoors. The spouses even came along and were good sports. Sedona is known for its vortices and is a highly sought after spiritual and metaphysical destination. There are also abundant opportunities to visit National Monuments and go hiking. We did all of these. I was happy to be hiking around at 4,500 ft. elevation and not having any difficulty with my breathing.

Keep Living; Keep Loving

Nothing in life can be explained perfectly. That’s one of the first things that you learn in a statistical analysis class. You can add as many variables as you like, and you still will never explain the full phenomenon. Why am I the only one with Cystic Fibrosis in my family? Well, you can start by pulling out science and a Punnett square, explaining how traits are passed down through generations, etcetera, but you still never know the full explanation. Why did I make it twenty years before being hospitalized, when so many other kids with CF are admitted frequently?

My New Life Potential

Kalydeco Header

Living life with CF is challenging enough in itself. Adding in chronic pain adds a level of complexity and challenge both physically and emotionally that can be a real game changer. In the winter of 1995/96, I had a traumatic fall while skiing and found out almost 12 years later that I had broken my back.

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