Rachel Whidden: A smiling Cyster

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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!

Road to Roo: Day 7

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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).

Road to Roo: Day 4-6

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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.

Road to Roo: Day 3

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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.

Good Read: The Cure Culture

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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.

Road to Roo: Day 2

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On the second day of vacation, we travelled to the Lake of the Ozarks in Missouri and camped on the lake. We got to go swimming and walk around in the nature. It was extremely beautiful! I think my favorite memory was when we tried to build a camp fire and roast marshmallows. Every campsite had a fire ring, so we bought wood to build a fire. I was in the car for 30-40 minutes doing my medicine, and let Andy build the fire.

Road to Roo: Day 1

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So I’m sure everyone has been waiting to hear about my vacation, and I am extremely excited to share it with you. However, we had such an action packed super fun time that I’m going to have to talk about it in multiple posts… otherwise this one post would just be a novel!

So anyways, we left bright and early on June 6th at 7am to head to St. Louis, MO. When we arrived in St. Louis we headed straight for the Zoo! It was so much fun and the zoo was so cool.

Staff Pick #2

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Now that I am out of the hospital it is much harder to find time to write these posts, especially when I’m getting ready for vacation. WOOHOO!

Anyways, the second staff member at Froedtert Hospital that I would like to cover is Laura. She was my nurse for a few years and then got promoted (yay, Laura!). Luckily, this promotion meant that she still gets to stay on my floor and see me pretty much every day, just not take care of me. It was funny when Laura and I first met because we found out that we were from the same hometown. Then after some talking we discovered that I actually graduated high school with her little sister! So after that we had bonded.

Staff Pick #1

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First off… I wanna lead with my EXCITING NEWS that my PFTs were 81% today!!!!! (That’s higher than they’ve been in years!!!!)

Anyways, back to the real point of this post… While I’m in the hospital I just wanted to write about some of the amazing staff that takes such good care of me while I’m here. They can seriously make or break a stay. With being here for a couple of weeks at a time, it is very important to have a good staff. Luckily, many of the nurses on my floor are about the same age as me. I have befriended several of them (even though half of them have left me!). It’s always nice knowing that I’m gonna get to see a friendly face when I get admitted.