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CysticLife - A Cystic Fibrosis Community - Blog

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questions
999 Views ● 7 Comments
Relationships
I have to be honest with you guys, I've been getting a little stir crazy these last few days. As I've said in past blog posts, I actually like hospital stays. Ronnie and I tend to have a lot of fun while he's in. It's a good opportunity to spend time together, with no distrac...

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questions
715 Views ● 0 Comments
Cystic Fibrosis
Cystic Fibrosis!, Get off your ass and do something about it! - Fan Page Cystic Fibrosis!, Get off you ass and do something about it! - Group I have a CYSTIC FIBROSIS tattoo! - Group Bush's Team Breathe! - Fan Page ...

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questions
796 Views ● 2 Comments
Cystic Fibrosis
  After being in college for one whole semester, I've been thinking about what I have learned about myself and my CF just by being in college so here it goes: 1. I have the ability to take care of myself because I WANT to. It is rare ...

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questions
807 Views ● 4 Comments
Cystic Fibrosis
We’ve all been there, well many of us have. You know what I’m talking about, the “wake up and smell my reality” moment. The “whoa”, “ah-hah”, or “holy shit” moment. This is specifically the point at which, despite our most valiant effort...

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questions
1245 Views ● 7 Comments
Tips and Tricks
I'm constantly pleading with parents of CF children to not put their kids in a bubble. Not only does it end with the child being socially awkward, but it can also cause the child's immune system to be weakened. I have often pointed to studies that site that it is actually good for childre...

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I have a new year's resolution...kind of...that I wanted to share with all of you. This year, my resolution is to be more supportive. Now, I feel that I am extremely supportive by most standards, but I have realized this holiday season that I'm not exactly doing my part to get Ronnie back...

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questions
945 Views ● 3 Comments
Success Stories
It's so crazy to think that the year is already over. My whole life i've grown up being "The Class of 2009" and now it's a year of the past rather than a year that seems like decades away. But this year was certainly a great one. It marked a transition from high school to co...

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questions
Cystic Fibrosis
There's that moment when you're playing the piano or kicking that soccer ball or solving for X when everything just clicks. It usually comes after a fair amount of practice and nose to the grindstone, that 'A-HA' moment when you get it, finally, and you're so jazzed you don...

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questions
857 Views ● 3 Comments
Lifestyle
Just want to give a big thank you to everyone who has sent me messages about my ribs and offered there advice and/or kind words. A quick update: They were feeling great two days ago and then like an idiot I decided to hoist heavy mirrors and wall decor to decorate our new place. Bad decision. They'v...

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questions
925 Views ● 2 Comments
Clinic Visits
Yesterday we had an apptointment with a new clinic. We were not happy with the care we had been receiving from our local clinic. The drive was long (4hours) and the appt. was long (5hours). The kids got very restless in the room. I was pleased with the new clinic staff. We are starting all new again...

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So this is it. CysticLife.org is finally open to the public and we couldn't be more excited. After months of hard work by a great team (if we do say so ourselves) our dream is finally a reality...sort of. Let me explain.   The site design has been made. The pages are coded. ...

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