The one thing that has been drilled into my head the most growing up is that CFers can be very dangerous to each other. The infections and bugs that we grow in our lungs can be very contagious. Therefore, we are not supposed to be within an arms’ length of each other at the closest. This makes it really hard to meet the people who you can relate to the most.
Continue reading “Cysters and Fibros and finding the right support”
I’m sure many people have been waiting to hear about what it was like being on the Vertex (Orkambi) drug trial. I haven’t been able to post about it due to the strict regulations that were put forth by the trial. Now that I have been officially terminated from the study, I can finally post about my experience! Continue reading “Vertex: The Journey to Orkambi”
A month ago I made the decision to get a port. It was a long and difficult decision for myself to make for several reasons. There were so many pros and cons in my head, but mostly it had to do with being stubborn. If you know me personally, that is not a surprise.. Continue reading “Journey to the Port”
A couple of years ago I decided that I wanted to be a little more active in the CF community as I was growing up. So I started joining Facebook groups and met a girl named Rachel Whidden. She was just someone who had similar interests as me, and happened to have CF too. So I added her. It wasn’t until this last week that we really started talking. We talked about our love of traveling, so I really hope she gets to get back to that life really soon! Continue reading “Rachel Whidden: A smiling Cyster”
This was by far my favorite day of Bonnaroo. We started out by sleeping for a few hours before we had to go back to volunteering at 2pm (We didn’t get back to our campsite until 9am from the volunteering the night before; see Road to Roo: Day 7). So that shift was super busy because people LOVE to lose stuff! At least the time went by really fast because I was being super impatient for the night to come… It was MUMFORD & SONS night! Continue reading “Road to Roo: Day 8”
This probably turned into the craziest day of Bonnaroo I’ve ever had, and that was simply because of the scheduling. First of all, I woke up at 7am because you can’t sleep any later than that due to the heat that starts to fill your tent. Then we hung around for a the morning, playing cards and chit-chatting with people. Some time in the early afternoon we got ready and headed to Centeroo (the main area of Bonnaroo with all of the stages and fun stuff). Continue reading “Road to Roo: Day 7”
This post covers three days of our vacation because not a whole lot happened. Most of our time was spent hanging around our campsite and meeting new (and awesome) people! We woke up early on Tuesday and got ready to head to Manchester, TN to meet our wonderful Bonnaroovians! We had a really yummy breakfast at Waffle House, which was a must since we were in the South. Then we headed to the Manchester high school for volunteer check-in. Continue reading “Road to Roo: Day 4-6”
Ahhhh! It’s been over a month since my vacation and I am only on Day 3! I haven’t even gotten to the festival yet! I am going to have to start posting more often to get more up-to-date on my life.
So anyways, the next stop on our vacation was Nashville. We went to Nashville the last time that we went to Bonnaroo, but we only stopped for BBQ and didn’t really do a whole lot. So this time we planned to spend the whole evening there. >
I was browsing the web and found this really interesting series on a site called Motherboard. I just read it to see what it was about, but I found it so interesting that I wanted to share it with all of you!
The Cure Culture by Jason Koebler is a written about his friend with Cystic Fibrosis. While there are thousands who have a story like his: a friend who has Cystic Fibrosis, struggles, and eventually loses the battle. Continue reading “Good Read: The Cure Culture”
The Living, Breathing Wendy 