The CF Foundation recently introduced a community blog to, in the words from their announcement, they “wanted to share some of our favorite blog posts that represent the reality of living with CF.” The announcement goes on to say:
The CF Community Blog is a space where people with cystic fibrosis, parents, volunteers, clinicians and friends of people with CF can share their real life experiences. The blog showcases all aspects of life with cystic fibrosis. The good, the bad … and the just plain messy.
Here are links to blog entries highlighted by CFF in October:
Orkambi: A Life Sentence – I’ve lived my whole life like it has an early expiration date. Recently, a drug was FDA-approved that could change that. I’m grateful, but I’m also scared…
Checking Yes – Annoying though it may have been for me, my mom was determined to raise a daughter who was healthy despite CF. However, we would both soon realize that not every symptom is visible.
My Small War Against the Feeding Tube – Why do we feel like failures if we can’t get our children to gain weight and have to concede the battle against the feeding tube?
Managing School From a Hospital Room – The only thing that is certain in my life is the uncertainty of my teenage daughter’s next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.
Seeing the Humorous Side – While my husband and I are learning more about raising a daughter with cystic fibrosis, we don’t let the occasional humorous moments pass us by. Being able to laugh about certain things lets us know that we have come a long way.
Full Disclosure – There comes a time when all cystic fibrosis patients must come out of the closet.