Blog
Musings on Living and Laughing with Cystic Fibrosis
Feel Flow
On Finding Strength
This is not me! Recently I've been pondering the impact that continually seeking strength has had on my life. Clarity always seems to improve with hindsight, and as I can now legitimately call myself "old" (at least in CF terms), the influence of this seeking is...
read moreDepression Sucks…And What You Can Do About It
I've not been writing much lately, but that's because I've been busy becoming unstressed. It's an ongoing project, but suffice it to say, I think it's working. I have my moments, of course. While driving with three dogs in my car and one spots another dog daring to...
read moreI’m Getting Old And That’s Good, Right?
Wow, it has been so long since I've written anything! There are several reasons actually, but the biggest one is that I am falling apart. Not in a bad CF kind of way. Actually, since withdrawing from the trial of the miracle combo drugs (not a miracle for me), I...
read moreA BIG, BIG DAY
Just as we all remember where we were and what we were doing when JFK died, I remember where I was in 1989 when I learned that the gene coding for CF had been identified. It was a BIG day. Everyone in the CF world was convinced that a cure was just around the corner....
read moreMy Quantified Self Experiment: Can Heart Rate Variability Be Useful In Predicting A CF Exacerbation?
There is a movement afoot. It goes by a few names; quantified self, biohacking, and biologging are a few. The quantified self website has a tagline which sums up the purpose of this movement quite well, "self knowledge through numbers." By using technology, usually...
read moreJulie Desch
JulieDesch@gmail.com