tag:blogger.com,1999:blog-5054655337883254442.post4422806083249218851..comments2024-02-01T03:55:09.220-08:00Comments on Inhaling Hope: CF Awareness Month Blog- The First Year- The Worst YearInhaling Hopehttp://www.blogger.com/profile/10487999036810367535noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-5054655337883254442.post-68182913432801894792013-05-04T09:02:17.683-07:002013-05-04T09:02:17.683-07:00I think a late diagnosis adds an interesting eleme...I think a late diagnosis adds an interesting element to the disease. There is an adjustment period that isn't there for people who have been doing treatments since birth. I like finding others with late diagnosis as well because our experiences are slightly different from other CFers.Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-43590212561850417992013-05-04T09:01:00.097-07:002013-05-04T09:01:00.097-07:00I often wonder how much healthier I would be if I ...I often wonder how much healthier I would be if I had an earlier diagnosis and if I had been more proactive when I was first diagnosed. I think my parents thought (and still do??) since I had such a late diagnosis I must have a super mild form of the disease, but that obviously isn't the case. At least we are both being proactive about our health now!<br /><br />I agree that I could talk to you about this for hours!! Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-15820664544593082892013-05-03T06:25:13.205-07:002013-05-03T06:25:13.205-07:00Very interesting post!! Treatments in the dark mad...Very interesting post!! Treatments in the dark made me laugh. I think that is the first time I have heard anyone say that. <br /><br />IH you and I both were diagnosed later in life me before I hit my teen years. When I was diagnosed I didn't know anything about it CF. I just remember my mom becoming very upset when we found out. I just assumed ok I guess I will still be coughing and taking care of myself in a different way. At that time I was doing flutter no VEST. I didn't get the VEST until years down the road as my dr. said that flutter was sufficient. I am glad I finally did get the VEST. My CF today is a little different than when I was first diagnosed bc I can now tell that things aren't as healthy as they use to be but I am still the same old me. <br /><br />To both you and Colleen, I am so glad that I have found you on blogger and other social media sites. If you two ever want to talk you know where to find me :) Johnhttps://www.blogger.com/profile/06866357988143268043noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-5068890853220187612013-05-02T15:28:35.986-07:002013-05-02T15:28:35.986-07:00My CF became much more prominent in my life around...My CF became much more prominent in my life around the same age as when you got diagnosed -- when the Vest came out. You could have taken these words right out of my mouth, "My logic was that I lived 14 years without doing a single treatment I wouldn't die because I skipped one night. At the time I knew CF was progressive but was blissfully unaware that it was fatal so I did not totally understand the importance of treatments." <br /><br />That's why it kills me so much that my parents pretty much ignored my CF for the first 13-14 years of my life! Sometimes I think of how much healthier I could be if I did treatments my whole childhood (which I didn't until I was 14)...but then I have to push those negative thoughts aside and just worry about the here and now. I'm taking care of myself now and that's all that matters. <br /><br />I wish you and I lived closer because I feel like we could have a several hour conversation about this topic! :)Colleenhttps://www.blogger.com/profile/18246468485698360524noreply@blogger.com