I began to create videos and post them on Youtube several years ago because I had been sicker much more frequently than I had previously – as frequently as only 4 months apart. I found that a lot of people, even those closest to me, still didn’t understand what daily life with CF – home and in the hospital – was like.
I admit that it’s scary putting yourself out there, especially when you’re sharing yourself at your most vulnerable. It’s also scary admitting to others how much CF has affected me. I don’t want people to pity me, but I do want them to know my reality.
CF isn’t pretty, and I felt that I had a responsibility to myself, my husband, and the CF community to expose the terrible secrets this disease keeps – the often quiet progression of lung disease, the sometimes invisible effects of GI disease, and the fact that I wasn’t doing as well as many people had thought.
There is a huge need for funding further research to treat Cystic Fibrosis. We often use the phrase, “CURE CF,” but curing a disease that effects every single cell in the body is not easy. It’s with this knowledge that opened up my life to the world in the quest for CF Awareness.
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