Tuesday, September 7, 2010

CF stole my youth but I'm still kicking!

First, let me say that the 3 groups I've started on Facebook have been very well received. These are the three:

1) I have cystic fibrosis, depression and other emotional issues.
2) Cystic fibrosis was supposed to take my life yet here I am.
3) People with CF raising money to beat CF.

On my 37th birthday, I decided I wanted to get people together who are making a difference in the world of cystic fibrosis but I also wanted them to know that they are not alone when dealing with depression, addiction, compulsion and just an overall feeling of being overwhelmed when having cystic fibrosis. When we were kids, we had to deal with life-threatening doctor's appointments. We had to deal with the fear of cross-contamination and bacterial infections. A cold was not just a few days at home. It was a doctor's appointment followed by another followed by weeks of concern and confusion. Overnight camp was not an option and having a day without some type of therapy or taking some type of medication was the equivalent to a "normal" person going a day without eating or drinking.

CF has restricted me from many things. I had to stay close to home when I went to college. I could not have children without in vitro fertilization. I cannot eat anything with fat without taking some type of pancreatic enzyme. I do four hours of therapy a day, I take 20 to 30 pills and I go to a doctor at least a half dozen times a year.

Despite all of that, I sit here 37 years old and 3 days knowing that to this point this disease has not beaten me.

I've mentioned my problems with depression. I was suicidal in college and have thought about suicide off and on for years. I've dealt with childhood traumas - some I've mentioned and others I'm scared to confess. I've mentioned the problems I've encountered currently but I've held in some of my issues because I'm afraid how people will react. My book will do the confessing for me.

As I completed Step 7 and started Step 8 in my 12-step program today, I thought about what a different person I feel like compared to when I entered a rehabilitation facility nearly 10 months ago. I'm stronger emotionally, more prepared to cope and open and honest for the first time in my life.

This Thursday is Rosh Hashanah which is the New Year in Judaism and will soon be followed by Yom Kippur, the holiest day in the Jewish calendar. This is the day in which we atone for our sins. I think I can forgive myself now but I still must atone for a lot of things I've done wrong. I've hurt some dear people in my life.

So I go from sitting at home and praying all day Thursday to a doctor's appointment on Friday to see how my lung function is. It will be the first time I've been back since Dr. Wolfenden died. It will surely be hard to walk through those doors. I'm going to give it my all though as I know she would have wanted me to do that. I'm worried about my pulmonary function scores but I've worked hard the last few months so I can't fault my effort.

I'm looking forward to The Drive at 35 coming out in the next year once we get a publisher. I'm really excited about Celine Dion, Garth Brooks, Dale Murphy, Boomer Esiason, Robert Beall (President of the CF Foundation) and Frank Deford being on board to write forewords for the book.

Ethan continues to prosper despite the stroke he suffered at birth. Avery is a twenty year old in a four-year old's body. Andrea is doing well. She's on hiatus but her tennis season will resume shortly so I will keep everyone updated. My softball season begins next week. I think I've recruited the dream team of softball and I think this is my best chance to captain a champion. Avery's soccer team has been fun to coach and I look forward to our season opener in a couple of weeks. I know as much about soccer as Paris Hilton knows about modesty so it should be interesting.

That's all for tonight. I wish everyone a healthy and enjoyable week and to keep working hard to prove the naysayers wrong.

Best Wishes,



  1. Good, honest post. Its ironic, I just read another blog from one of Dr. Wolfenden patients and dealing with this doctors death. If your interested the blog is


    Good luck, Colleen