Thursday, March 29, 2012

Oli & Nush

This video is called Getting Nosey about CF with Oli and Nush and it's all about what CF is from a child's perspective. It's narrated by two English children (one with CF) and it explains about enzymes, vitamins, mucus, physiotherapy, nebulizers, hospital stays, IVs, but it's all explained so that children can get an understanding of what CF is, too. This is a very child-friendly video explaining the basics of CF and I definitely recommend it for children learning about others with CF, or their own CF, too.

Since we're doing a fundraiser at my school in a couple weeks for CF/Great Strides, I thought the students should know what CF is and why we're doing the fundraiser. I don't remember where I first got information about this video, but I sent the link to the entire staff hoping that they'll show their students the week of the fundraiser. This morning we showed our kindergarten class the video and explained to them (the best we could) that I have CF. Of course they didn't fully understand, but they asked a couple questions after the video was over. Several questions involved different variations of: Do you have to get shots? Do you have to go to the doctor/hospital? And then of course they had to tell stories about how they've all been to the doctor and they've gotten shots, too. Gotta love five and six year olds! :-) We're planning on showing it to them again after we come back from spring break, during the week we're fundraising. I'm also planning on bringing in a couple pictures of me doing my Vest and nebulizers -- mostly for the adults in the room, but I'm sure the kids will get a kick out of it.
I know I've said this before, but I absolutely love and I am so lucky to be working with such a supportive staff! They're all more than willing to participate in this fundraiser at school and several of them have registered, created and purchased Colleen's Cortland Crew team shirts, and have fund-raised on their own! Thank you to every staff member of Cortland Elementary for all of your support and encouragement!

Saturday, March 24, 2012

Great Strides!

Only 3 more weeks until the Great Strides event in DeKalb!!!! I can't believe it's coming up so quick - I've been planning it since before Christmas! Last I heard, there were over 70 people registered for the event and I know that more have registered since then. I've also got about 30 people from work who have donated and hopefully show up at the walk and I'm really hoping to get some students/families there as well.
I cannot believe how much support I've gotten this year, it's amazing!!!! This is by far, the most money I've ever raised before a walk with my page total being at $935 as of today! Plus however much my work team has raised thus far, which I think is close to $300! I've literally planned this entire event down to every donated raffle item and I can't wait to see it all fall into place in a few weeks. So far I've gotten about ten different local businesses that have donated gift baskets or gift certificates to enter into the raffle at the walk. I've never done a raffle before (especially because this is only the second annual at this location), but it looks like it's going to be pretty successful as far as the fun things we're raffling off. We have lots of restaurant gift cards, a beauty package put together by a salon, mini-golf certificates and a bowling party package -- it's going to be hard not to enter in a few tickets for myself! :)

We're also doing a change collection at my school the week leading up to the walk, and my goal for that is to raise $20 per classroom, which would make that donation total over $500! I am going to announce the class at each grade level (K-5) that raised the most, the one classroom that raised the most in the whole school and the grand total raised at the walk on Saturday, so I'm really hoping that encourages the students to want to attend the event, too. The class at each grade level that raises the most will win a prize (not yet determined) and the class that raises the most overall will win an even bigger prize -- I'm thinking something like a movie and popcorn party as the big prize, and maybe an extra recess or something for the other classes, but I'm discussing that with the staff this week at our staff meeting. I'm also hoping that as a school we can set a goal of raising $500, and if the students surpass that goal, the principals will do something fun for the kids -- ie: serving lunch for a day, wearing a funny wig/costume to school one day, etc. I want the kids to be motivated and I want it to be a fun experience for everyone -- thank goodness I work with such an amazing staff!!! :-)

On top of the raffle and announcing my school's successes, we'll also be having a DJ to provide some musical entertainment for walkers before, during, and after the walk, along with lunch to feed everyone after they've walked three miles. I've put some much time and energy into planning this and trying to make it more fun than it was last year, that I really hope people come out and have a good time. So if you're going to be in the area on Saturday, April 14th, please feel free to stop by and join in the fun! I'll definitely be taking lots of pictures (or putting someone in charge of it since I'll be at the microphone all day) and posting them after the event. If you are unable to attend and would still like to donate, please go to to help me reach my goal of $1,000!

Friday, March 16, 2012

I'm Finding "The Runner" In Me

I am feeling so much better since my last post. I ended up taking a personal day off on Friday to kind of relax and make sure I got in all of the treatments I needed. Friday, Saturday and Sunday I did four treatments a day - which totally sucked - and I went down to three on Monday, Tuesday and Wednesday and now I'm back down to two. I know I was supposed to do it for about 10 days, but I can definitely tell that I'm feeling better. My energy is coming back, I have much less post nasal drip (what I do have I think is just from allergies), and I haven't had anymore headaches. I've also stepped up my running thanks to this gorgeous weather we've been having! We've had some record-breaking temperatures this week up into the 70s and possibly even hitting 80 today which is very atypical for the Chicago area in the middle of March - it's usually 40s, 50s, maybe 60s if we're lucky.

This is how I feel it's been this whole week! :-)
It's been awesome having such beautiful weather because it's encouraged me so much more to run outside! I went running Sunday, Wednesday and tonight and I'm thinking I might tomorrow if it's still nice. I also bought adorable new running shoes and added a few pieces to my running wardrobe -- I feel like I'm really becoming a real runner now. :-) I'm planning on signing up tonight or tomorrow for my first 5K which will be on Saturday, June 16, so exactly three months from today! I'm also making Tim run it with me, so I'll have a running partner. I found a route around my neighborhood that's 2.4 miles and I've been trying to run a little bit more of it each time (less walking). Sunday and Wednesday I was able to go a mile straight before walking a little bit, then alternating running and walking the rest of the way. Tonight, I ran 1.67 miles straight before I walked (then alternated). I was so proud of myself that I was able to push myself to go that far! And I find it so funny that it's always my legs that crap out before my lungs do. I've gotten much better at breathing while I run so I'm not so short of breath as I'm running and I can tell that my legs are getting stronger; I just love that fact that my lungs can outlast my legs! I'm hoping that soon enough I'll be able to run my whole 2.4 mile route and then I'll have to add a few more blocks to it to get it up to the three mile (5K) mark. Who would have thought I'd be this into it - I thought for sure it'd be a chore/something I really dislike, but I enjoy the challenge and I love to see myself slowly improving. Yay, me!

Thursday, March 8, 2012


Today's clinic visit was long, to say the least. My appointment was scheduled at 11am, so I left the house around 8:30 to make sure I left plenty of time in case I hit traffic. It wasn't too bad on the roads, so I got to the hospital around 10 and checked into the clinic around 10:15. I brought along my book, Catching Fire, to keep me busy and got about 120 pages of reading in because I didn't get a room until noon!! Of course, they put me in a room and I didn't see the doctor til at least 12:30. This is very unusual for my clinic, so I tried not to get too upset over it, but I was so tired of waiting and of course, very hungry!
My appointment results kind of followed the same trend: annoying. I'm not very happy with my PFTs this time; my first FEV1 was 2.64L which is about 84%, so down about 4% from last time. Now if you would have asked me yesterday what I thought I was going to get, I would have told you it would probably be about the same as last time, but I guess not. I did the test two more times, and they progressively went down a tiny bit each time which really made me irritated.
When I saw the doctor, she said that I sounded hoarse and that I had a 'throat-clearing cough' that I didn't typically have and asked me if I'd been having a lot of post nasal drip. I thought about it for a second and realized that I have been pretty stuffy and having some sinus pressure the past couple days. Yesterday, in fact, all day at work I had a pretty bad headache, so she thinks that my body's working to fight something off. I also had a slight temperature of 99.1 today, so that reassures me that I might be fighting something.
We decided that I need to increase my treatments as much as possible over the next ten days-two weeks to try to fight off whatever I may be catching. I'm hoping that it doesn't go down into my chest and hopefully just stays in my sinuses. If the increase in treatments doesn't help in the next ten days or so, or if I have an increase in thick, green mucus, then I'm going to give her a call and she'll start me on some antibiotics. Even though my lung function is down a little bit, we've decided to not start me on Kalydeco just yet, but to keep it on the back burner as an option for later.
Also, I've been pretty busy with preparing for Great Strides, working after school and tutoring that I've been kind of slacking on my running routine. I'm really hoping as the weather is warming up I won't have to limit myself to only working out on Tuesdays and Thursdays at the gym, but that I can start running outside after work/tutoring any day. So today wasn't as successful as I had hoped, but I can't get discouraged. I need to rid my body of whatever it's fighting off and keep up my running routine to prepare myself for my first 5K in a few months. :-)

Monday, March 5, 2012


I am very sad (and mad, and disappointed) to report that I have to reset my compliance count. :-( This weekend Tim and I went out of town to celebrate his grandma's birthday and his great-grandma's 98th birthday!! We carpooled with Tim's aunt and uncle, so when I saw them in our driveway Saturday morning, I grabbed all of my things (about 3 different bags - one for Vest, one for clothes, the other for nebs) which I had all packed up and ready to go, and we were on our merry way. It wasn't until Saturday evening when I went to do my second treatment for the day, I realized I left most of my nebulizers and viles on the table - still drying from my morning treatment!! AHHHH!!! I was so MAD!  All I had with me was my Pulmozyme for that evening, but no Albuterol for that treatment and the morning one, and no Hypertonic Saline for my Sunday morning treatment. I did my Vest for thirty minutes like I usually do, that evening and Sunday morning, but it definitely wasn't as productive without my nebs.
When we got back last night, I did my regular round of treatments with all of my nebs, but I'm resetting the count for today since this is the first full day that I'm back to doing everything. I made it 215 days without missing a single Vest or nebulizer treatment, except in January when I had my little bought of coughing up blood and I was ordered by my doctor to stop treatments to give my lungs a break. I know it's not that big of a deal health-wise because it's not like I missed them for an entire week, but it just kills me that 215 days of hard work can be thrown away by three little nebulized viles and two nebulizers that got left sitting out. Of course, now my goal again, is to make it another year without missing anything!! - unless directed by my doctor.

Our new team shirts this year!
In other news, the weekend was great! We were able to see a lot of family, I passed out most of my Great Strides team shirts and ate a lot of food! :-) I'm really looking forward to this year's Great Strides walk in our town because it's only the second one out here, but it looks like it's going to definitely be bigger than last year! I've got a ton of people from my work registered, I'm working on getting the community involved more, and we're planning on doing a school-wide fundraiser at my work the week leading up to the walk! I'm very excited at the progress we're making and I really hope we meet our goal of $25,000 this year! If you'd like to make a donation to my team (Colleen's Friends & Family) please click on our team name - no amount is too little. The other day I was cleaning my nebs and refilling my vitamin/pill organizer and I realized how much 'equipment' and pill bottles I have everywhere, so of course, I took a picture of some of it.
THIS is the reason your donations are so important to me
This picture includes my nebulizer pieces, all vitamin, pill and medicine bottles and my Eflow pieces. It does not include, my Vest, nebulizer machine, Eflow machine, and all of my nebulizer viles. All of this stuff is so normal to me, I sometimes forget that other people don't have this stuff all over their houses too. I have all of my medications in the bathroom in containers, my nebulizers and pieces in the kitchen and on the kitchen table (to dry), my pill organizer and enzyme bottle always out on my kitchen counter, and my Vest and nebulizer machies always plugged in and ready to go at my desk. There's not a day, or really an hour, that goes by where I'm not physically reminded by my CF by something laying around the house, let alone taking my enzymes and/or coughing.
I cannot wait for the day when CF stands for Cure Found and future generations will not have this as their 'normal'. I am in no way trying to complain about the things I do daily to keep myself healthy, again because it is what I am used to. But for those who don't have CF, or are never around it, this is what it looks like. This is why it is so important to me (and for me) to have people make donations to the Cystic Fibrosis Foundation & Great Strides. I would not be alive today if I didn't have all of these medications available to me. These medications would not be available/created if it wasn't for the money donated for research. So thank you to anyone who's ever donated to CFF because you're helping to keep me alive! :-) Please consider making a small donation to my Great Strides Team Page to support the CF Foundation in helping make CF stand for Cure Found!

Finally, this Thursday I have my next CF clinic appointment where we'll be thoroughly discussing Kalydeco as an option for me -- another amazing creation from the donations of people like you! :-)