It’s day 9 of Cystic Fibrosis Awareness Month and time for me to share my answers to the rest of your questions (here’s Part I if you missed it)! After the video, I’ve provided a writeup of both the questions and answers, along with any links I promised I’d share, so you can refer to that if you’re unable to watch.
There’s no point in me rambling on, so here you go!
(Again, these answers are from my own personal experience with CF, and the information I’ve obtained on my journey living with this disease. Please don’t take any of what I say as advice or the only answer. Us CFers each have our own story and our own routine as prescribed by our care team. Thanks!)
Important links:
Katie asked: When are the times, or are there times, when you forget you have CF?
This is a tough one. I’m not sure I ever totally forget I have CF, but there are plenty of times when I don’t think about it. Like I talked about in part one, it’s important to remember that there’s more to me than having CF. Taking time to enjoy the rewarding parts of my life – like my husband, friends, family, the city I live in, hobbies – helps me not to dwell in the difficulties of having CF.
Kara asked: I love the Great Strides walks we do to raise awareness, just curious if there are any additional events or other ways we can get involved locally?
For those of you unfamiliar with Great Strides, it’s a national walk event sponsored by the CF Foundation – and it’s the biggest fundraising event they have. Last year nearly $40 million dollars was raised to help fund cystic fibrosis research (I talked about why fundraising for CF is so important in Friday’s vlog).
For other ways to get involved, the best advice I have is to check with your local CFF chapter. (Just check out the link above to help you find the chapter closest to you.)
Sarah asked: Do you feel like CF limits you from doing things on a daily basis? Not necessarily big life changing things, just little daily social events or activities?
Having my life be as normal as possible is incredibly important to me. That’s just one of the reasons I do my best to take good care of myself – that means no skimping on my daily treatments, working out as often as I can, getting enough sleep, etc. But there are days where CF gets in the way. I’ve had plenty mornings that I wake up coughing my guts out and have to forgo a workout. Time with friends that has to be cut short because I need to get home to do my treatments. Or nights with little sleep because of more coughing. I feel very lucky that right now I’m healthy enough to lead a full and productive life.
Please feel free to leave any other questions you may have – new ones or anything that relates to this week’s Q&A – in the comments below.
From A to Pink | A Blog by Katharine Scrivener 