Sunday, July 31, 2011


People with Cystic Fibrosis are not supposed to come into contact with other people with CF because they can share each others germs and/or get each other sick - makes sense, I suppose. But sometimes it's nice to be able to talk to someone who really understands what you're going through, and thankfully the internet is making that possible today. I recently joined a site called CysticLife which is a site where people with CF (or people that know someone with CF - like you!) can chat with each other, or post questions to everyone and get some advice and feedback.
I really enjoy being a part of this site, because although I know I have so much support from Tim, and my friends and family, it's hard for anyone to know exactly what I'm going through or how I'm feeling. It's nice to be able to hear what other people with CF are going through and see what works or what doesn't work for them.
Like I mentioned before, just because you do not have CF doesn't mean that you can't join the site. I am considered a "cyster" because I am a female with CF, the males with CF are called "fibros" and then everyone else would be called "husband, wife, mom, dad, friend, etc." If you're looking for a site where you can get more personalized stories, or you have questions about your role in a CFers life, this is the perfect place to go!
I'm very interested in hearing how other people feel when they have someone with CF in their lives. That's another part of the site I really like. I can read stories or answer questions from parents who have children with CF. It makes me think about how my parents must have been feeling when they were raising me.

What is it like for you to know someone with CF (maybe not just me)? Does it make you think any differently, or do you completely forget about it until I post something about CF? I honestly would love to hear other people's points of view on what they think about my CF, or what they thought when they found out, etc. Please feel free to share your thoughts by commenting at the bottom of the post (or if you don't feel comfortable doing it publicly, you could always send an email). :-)

1 comment:

  1. Wow, thank you so much for giving all that love to CysticLife!! We're so glad that you decided to come on board and are finding value in the site. Great blog cyster!!!