20

Jun

No Control

Life is not a controlled experience whether you have a chronic disease like CF or not. But, as human beings, we desperately try to control all aspects of our lives. This is as true for me as for anyone else, READ MORE

05

Jun

Being “Normal”

  When I was a child, I was embarrassed for anyone to know I had cystic fibrosis. I just wanted to be like everyone else. For me, that meant hiding my CF. I didn’t focus on what I couldn’t do. READ MORE

29

May

I’m 61 from Brooklyn, New York and I’m a cyclist, a double lung transplant recipient and I also happen to have cystic fibrosis (CF). CF is a genetic disease that affects the lungs, digestive system and many other organs in READ MORE

22

May

When living with cystic fibrosis, knowing your mutation is key, but it doesn’t have to be the sole focus of living your life. In fact, it absolutely should not be. If you’re lucky enough to have the right drugs to READ MORE

15

May

Heroes

    According to Miriam Webster dictionary, the simple definition of a hero is “a person who is admired for great or brave acts or fine qualities; and a person who is greatly admired.” This definition doesn’t mention anything about READ MORE

10

May

As you all know, May is CF Awareness Month. There have been a lot of Facebook posts and talk about how awful CF is, and it is awful. You won’t get any argument from me on that. However, today, I READ MORE

01

May

  In The Wizard of Oz, Dorothy and her companions faced a dangerous journey down the yellow brick road… just as people with cystic fibrosis face obstacles every single day. Instead of lions, and tigers, and bears, (oh my!), we deal READ MORE

24

Apr

Dealing with Death

Death. Not exactly a topic to liven up a dinner party. But, people with cystic fibrosis face it and learn to deal with it at an early age. You know, I’d go in the hospital as a kid and get READ MORE

16

Apr

A Letter to my Donor

Six years ago, on April 18, 2012 I received the ultimate gift – a healthy set of lungs.     This is my transplant story and finally, an open letter to my donor Chris who gave me a second chance at READ MORE

10

Apr

Dealing with an injury or illness where you are somewhat tied down and forced to rest gives you a lot of time to  THINK . . . THINK . . . and then THINK some more . . .   READ MORE