The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times in my journey with CF.
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When I was young, my parents tried to increase the appeal of hospital stays by calling them “sleepovers.” But as I got older, I realized that these two things are, in fact, not the same.
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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.
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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.
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Beth Evans, a 48-year-old with CF, is currently playing the lung transplantation “pre-wait waiting game.” She is sick enough to need new lungs, but not quite sick enough to get them just yet.
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A few years ago, CF started to take its toll on me. I kept getting sick, going on and off IVs, going in and out of the hospital. But through it all, I found a silver lining.
