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.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
When I ran into a particularly difficult situation with my last job, the “d” word entered my lexicon for the first time: disability. While my life doesn't look like I thought it would, I have come to accept where I am and gained a new perspective on work and life.
Going back to work was hard. So. Very. Hard. But with the mounting costs of cystic fibrosis, I didn't have a choice. The decision had been made for me.
Like many of my millennial compatriots, I was booted from my parents' health plan when I turned 26. While my friends were shrugging health insurance off as just another growing pain of their 20s, I was panicking.