I think this quote sums up how we try to deal with CF...
"Keep your face to the sunshine andyou cannot see the shadows"Helen Keller
Hello CF Members
All I can say is Wow, you are a wonderful group of people and I see the same theme in all your posts, no one wanted this disease but hey You will do the best you can and deal with it. That is amazing. I do not have CF or a child with CF. I am a Mother however and I had a young, healthy 21 year old son die in a car accident................no one said life is fair, but we are alive and that makes it our job to attempt to live life as well as we can. You are all an inspiration to me.
I am a nurse and have worked with CF patients but I have no idea of what it is like from your side and won't pretend to.
I am just helping cover for Gem as she needs to be off for a short time. Other mods will be by too so if something comes up just shout.
Please email me if you need something. Gentle Hugs.
Hello. I would like to share my view of CF with you. My son was diagnosed at age two, even though I knew something was wrong just after he was born.
I feel that CF is a way of life. My son hates that he is different, and that he cannot spend the nights at his friends house because he has multiple medications.
He always asks me if he is going to die. My response is always the same..."we are all going to die someday."
I use to think that CF was pretty much an "easy" disease to deal with. I mean, I always thought things would be ok. Lately, the disease has taken more of a front running with our lives and is becoming more of a problem. See my son has lost 20% of his PFT value over the last 6 months. He has been in the hospital 3 times this year and is working on number 4.
For the first time, since his diagnose, I am truely scared of what CF is going to do to my baby. I am actually becoming less head strong and confident that we will be ok. I now know that things are not ok. He is on tobi, xopenex, pulmozyme, hypertonic saline, cipro (antibiotics) three times a day, plus his vitamins, plus his vest and tube feedings (which he is relying on more and more as primary nutrition.) He is coughing more and more each day and running low grade fevers almost every day, if not every other day.
I dont want sympathy, because that makes me think that everyone knows what is going to become of him if no cure or solution is found soon.
Thank you for letting me vent, this is my first time on a support group site...I think I really needed this.
Post Edited (diddles) : 9/11/2007 2:15:58 AM (GMT-6)
I'm 14, I was diagnosed with cf at 5 months. I cant forget I have it, I have to live with it. I try to take life as it comes, but sometimes I get so depressed. I used to think I was a burden on my family and friends and I thought about taking my life. But music and my best friend, saved my life, and I'm glad they did. I'm planing to become a nurse and life my life as normally as I can. A kid at school told me I was weak because I had Cystic Fibrosis. I didn't cry, (though I felt like busting into tears), I didn't give him the satisfaction of seeing me cry, I stood my ground and held my head high. I looked him square in the eye and said, "I may not be the strongest kid to ever walk the earth, but at least I'm not weak minded" I walked away calmly. It took all I had not to dent his head in, but I was proud of myself for not doing this. He didn't think a little girl like me(I'm only 5'1 and weigh 85 pounds) would stand up to him, the biggest guy in out class. His face was hilarious!
Anyway, I run cross country, sprint in the 100 meter dash in track, and I play point gaurd on my basketball team. I now try to make the most of life and I dont take it for granted. I stand up for what I believe in and those who cant stand up for themselves. CF has made me a stronger, smarter and better person than I would be without it.