Mamabear, Welcome from the world of lerking! We love contributors. And yes everyone's cf story is so different. What is most fascinating (and sometimes sad) is to watch over the years how people's views change as they learn more and as their own cf change/progresses.
Do you have an intro thread somewhere? I'd love to hear more about your cf.
From my perspective I'd imagine you may have at least one mild mutation and an FEV1 above 80%? Also that you have very little IV experience. I hope this is true but the fact that you have CFRD doesn't necessarily add up with these other predictions. When were you diagnosed CFRD?
Interesting when I joined this site in 2006 I had some feelings that seemed to align with some of the things you mentioned. Since then I've realized many if not a majority do. For example, it's very typical for cfers who haven't been around other cfers to feel they are better, healthier and somehow different than other cfers. I really did and have done everything I ever wanted in life. I have gone to 8 cf doctors (moved a lot) and have picked all their brains and have heard some harsh stuff. For example, I remember a doc telling me when my FEV1 was 83% that if it got any lower he wouldn't suggest a pregnancy? WTF? Man I went right home and ran my legs off just to show him and my cf that they weren't going to stop me. My cf has not stopped me except that I did have to stop working. This is only cf related because I knew if I kept going at the pace I was that I was shortening my life even if only by a little. Somehow I thought I could do it all but talking with my non-cf friends I realize this is a common misconception before children. Most eventually learn the rule of two.
It was humbling learning many people with a better FEV1 than I were doing a lot more for their health than I and were more compliant than I when I thought I was taking care of myself. What I learned was dr's don't always know best and that I better start reading and learning and being proactive about my own health. Damn if she could do I could too!
What has been interesting is people that join and think things are great and then you realize they don't even know what an FEV1 (or this or that element of cf that you thought everyone as an adult with cf knew) is and then they learn what it is and what their's is and realize it is low. Those are the people that are most fascinating to follow. Everyone starts somewhere. For example, wanderlost who has come to terms for sure. Here's her blog too. <a target=_blank class=ftalternatingbarlinklarge href="http://www.laviecystique.blogspot.com
">http://www.laviecystique.blogspot.com
</a>
My cf has been a very steady -almost unnoticeable progression - up until I had my son. Be careful delivering at a hospital. I picked up MRSA while in delivering my son and have had it in my lungs ever since having mastitis at age 10 days old (son's age). Although I have not lost a single % in the 2 years since delivering Isaac I have to be more focused on my health than before. So much so in fact that the government deems me disabled due to the frequency of my infections. I gave it a try totally expecting to get denied. Nope! I am at home on SSDI.
Do you have an intro thread somewhere? I'd love to hear more about your cf.
From my perspective I'd imagine you may have at least one mild mutation and an FEV1 above 80%? Also that you have very little IV experience. I hope this is true but the fact that you have CFRD doesn't necessarily add up with these other predictions. When were you diagnosed CFRD?
Interesting when I joined this site in 2006 I had some feelings that seemed to align with some of the things you mentioned. Since then I've realized many if not a majority do. For example, it's very typical for cfers who haven't been around other cfers to feel they are better, healthier and somehow different than other cfers. I really did and have done everything I ever wanted in life. I have gone to 8 cf doctors (moved a lot) and have picked all their brains and have heard some harsh stuff. For example, I remember a doc telling me when my FEV1 was 83% that if it got any lower he wouldn't suggest a pregnancy? WTF? Man I went right home and ran my legs off just to show him and my cf that they weren't going to stop me. My cf has not stopped me except that I did have to stop working. This is only cf related because I knew if I kept going at the pace I was that I was shortening my life even if only by a little. Somehow I thought I could do it all but talking with my non-cf friends I realize this is a common misconception before children. Most eventually learn the rule of two.
It was humbling learning many people with a better FEV1 than I were doing a lot more for their health than I and were more compliant than I when I thought I was taking care of myself. What I learned was dr's don't always know best and that I better start reading and learning and being proactive about my own health. Damn if she could do I could too!
What has been interesting is people that join and think things are great and then you realize they don't even know what an FEV1 (or this or that element of cf that you thought everyone as an adult with cf knew) is and then they learn what it is and what their's is and realize it is low. Those are the people that are most fascinating to follow. Everyone starts somewhere. For example, wanderlost who has come to terms for sure. Here's her blog too. <a target=_blank class=ftalternatingbarlinklarge href="http://www.laviecystique.blogspot.com
">http://www.laviecystique.blogspot.com
</a>
My cf has been a very steady -almost unnoticeable progression - up until I had my son. Be careful delivering at a hospital. I picked up MRSA while in delivering my son and have had it in my lungs ever since having mastitis at age 10 days old (son's age). Although I have not lost a single % in the 2 years since delivering Isaac I have to be more focused on my health than before. So much so in fact that the government deems me disabled due to the frequency of my infections. I gave it a try totally expecting to get denied. Nope! I am at home on SSDI.