One Step Closer...!!!

Great news for CFers, and all of those who have donated to CFF, today!!! 

A new drug, VX-770, that is in Phase 3 of clinical trials is showing amazing results!! (More information in this New York Times article, too!) This drug directly works with the defective protein in patients with the G551D mutation, which only is about 4% of CF cases....BUT they're on the right track! Right behind this drug in clinical trials is another one called VX-809 which is going to be working with the most common mutation in CF patients (Delta F-508).

Each CF patient has 2 mutations of their CFTR gene (one from mom, one from dad) and doctors can perform tests to identify those mutations. I have one Delta F-508 mutation, and the other is unknown. So, the current VX-770 won't work for me, but it will help about 2,800 people world-wide! The next one coming up through drug trials, VX-809, might work for me to keep me living, laughing and loving!

This is what happens when all of YOU wonderful people make  

donations to the Cystic Fibrosis Foundation!!!! 

Books

I love reading! This definitely wasn't the case until I got to college. During high school, I felt "forced" to read, so it wasn't enjoyable. Throughout college, I finally started reading for pleasure, and I'm so glad I did. It's a wonderful stress reliever and I've become awesome at reading while doing my treatments (yes, I can read and shake in my vest at the same time!). Also during college, I gained a love for children's books and saw how important it is for children to have a love of reading, too. I have an enormous collection of children's books for either our future children or my future students...whichever comes first. Tim's gotten me several "banned books" for Christmases and birthdays that I learned about through my Children's Literature class, probably many books you've read or heard of (Lord of the Flies, James & The Giant Peach, Diary of Anne Frank, To Kill a Mockingbird, and A Light In The Attic...there are many more out there)


A few years ago for Christmas Tim got me a book called "Robyn's Book." I had never heard of it before, so I was very curious as to why he got it for me. This is a book that Tim found online written by Robyn Miller, a woman with Cystic Fibrosis born in 1964. It gives many details on her childhood and adulthood. Of course, how she managed her CF was much different than the way I manage it-with all of the new medicine and treatment advancements-her thoughts about living with CF are very personal and insightful. It's a great read, especially to learn more about what it's like living day to day with this disease, especially over 40 years ago.

Another book I've read is called "A Little Love Story" by Roland Merullo. I learned of this book from a fellow CFer I met through a CF chat room. It's a cute little story (fiction) about a new relationship where the woman has CF. This book addresses some issues that come up in a new relationship if one person has CF and has a very interesting ending.

I've also read and own several other books about CF. But, of course, I don't just read books about Cystic Fibrosis. Yes, I'll admit, I've read the entire Twilight Series twice. :) I'm currently finishing up "Harry Potter and the Goblet of Fire" (4th one) and am hoping to read the entire series before the final movie comes out. In college, I think I read every Nicholas Sparks books, but "The Guardian" was by far my favorite one because it's not his typical style. I've recently read "Something Borrowed", "Something Blue", and "Love the One You're With" by Emily Giffin. I'm totally into the girly, lovey-dovey books, but don't mind expanding my comfort zone and reading anything recommended by a friend or family member. I really hope you take some time for yourself and read-you really can learn a lot. There really is something out there for everyone--get a library card and explore the library; it's cheaper than buying books! Plus, books are always better than the movies!

Support

I have the best support system ever of friends, family and co-workers, but especially my new in-laws! Over the past couple of months, I've been trying to get everyone to register for the Great Strides Walk in DeKalb. Now that we're getting closer, I've seen a lot of people step up and step out to register and to get other people they know to join; it's fantastic! I've been doing this walk for years and I know that I've had our families' support every time, but this year I really feel like people are going above and beyond to try to raise money for CF through Great Strides. I really appreciate it!!! All of the money that you raise is going to research to keep me healthy and living a long life! I also know several other great people affected by this disease, so you're helping them, too! So, I quickly just wanted to say...

THANK YOU!!!!

Keep up the good work! :) Can't wait to see how much the DeKalb Great Strides raises for the first time! You guys are awesome!!

February 14th

(Warning, this post isn't all hearts and roses...)

Valentines Day, a day all about love, but what a girls holiday...it's true. I'm sure guys don't like it very much. It's always about chocolate and flowers (I'd definitely prefer flowers over chocolate)...what do guys like/want? Anyway...our first Valentines Day was the cutest thing, and I really wish I would have taken a picture! We had only been together for a few months, still in college in the dorms, neither of us had a car, so I thought we'd be spending a nice romantic dinner in the dining hall! :) The night before, Tim told me that we were going to dinner somewhere the next night, and he told me what time to be ready by. I had no idea where we were going, how we were getting there, what to wear (wouldn't tell me if it was fancy or not!), or what to expect...it drove me nuts, I think Tim loved that part. I debated all day long with what to wear, I didn't want to be over/under-dressed, so I tried to go right in between. Finally, it was time to go, and so I met Tim in the lobby of my dorm. He was holding a bouquet of red roses and was dress so nicely; black dress pants, a gray collared shirt and a black tie--it was the most I had ever seen him dressed up, I was so impressed! I still had no idea how we were getting to wherever we were going, but I assumed he had it all planned out. We went outside, to his friend Torry's car--she was kind enough to drive us around, with the company of Tim's two other friends. We went out to dinner at a cute little Italian restaurant, while Torry and the other 2 friends went to Steak & Shake until we were done. Then, they came to pick us up and we went back to Steak & Shake all together and had milkshakes, definitely a fun night! It was so cute! :) 

Exactly one year later, on February 14th, Tim and I experienced something many people our age, or many people in general shouldn't have to go through. Tim was coming to one of my classes with me in a huge lecture hall to try to make some guy in my class quit talking to me. We got to the building a little bit early, so we were just sitting on the benches in the hallway outside the lecture hall. Out of nowhere, we heard a loud, short BANG coming from inside the lecture hall, then there was a pause, then several BANGS in a row. My initial thought was the first sound was a door slamming, but after hearing the ones after, it hit me...gunshots. Tim shot up before me, realizing what it was first, and I got up as quick as I can after him to RUN. Several people were running out of the back of the lecture hall screaming as we were leaving the building. We ran together all the way across campus as police cars and ambulances were speeding the opposite direction. There were people outside in just their t-shirts and pants who ran from the lecture hall. Many students were just getting out of class at the time from other buildings who had no idea what was going on, so we had to let them know not to go to that side of campus. We had no idea how many shooters there were, if they were just in the one building or if they were going to run all over campus; it was terrifying. Tim and I stood in the same spot, where we ran to, for quite a while before we felt it was safe enough to start heading back to my dorm or Tim's apartment. Finally, when we felt it was safe, we took the long way back to my dorm first. Luckily, there were police everywhere so we felt safe walking back, but it was still scary not knowing exactly what was going on, so many unknowns. Security was tight when we came to my dorm, and they were reluctant to let Tim come in with me because he didn't live there, but thankfully they did. We went upstairs to my room, and my parents were trying to call me, but the phone lines were so crazy at the time, my calls kept getting dropped. I was able to tell my mom that I was OK, and that I'd talk to her later. I gathered up a few of my belongings, and Tim and I walked several blocks to his apartment, further away from campus. We wanted to get as far away from campus as possible at the time. 

February 15th, 2008

The story was all over the news; six people were killed in Cole Hall that afternoon, including the gunman who took his own life. I was able to talk to my parents later in the evening when things slowed down a little bit. It really was so surreal. I kept replaying it over and over in my head, I couldn't believe what really just happened literally just on the other side of the wall in that building. Tim and I talked that night, getting all of the "what if's" out. What if he would have waited 15 more minutes and done it during my class? What if you didn't come to class with me and I was alone? What if he came out of the classroom and into the hallway chasing people?....We just talked all night and got it all out. I don't know what I would have done if Tim wasn't with me that afternoon, I was glad (and I don't like to use that word, but I think you understand) that we went through such a horrible thing together because we knew what the other person was feeling. 

The following day, there was a Vigil held on campus for the people who lost their lives. (Tim and I went together where this picture was taken.) It felt like a sense of closure to attend the vigil and pay our respects. Many people left campus (it was closed for a week after), but we both felt the need to stay around the area. We didn't want to 'run away' from it. I felt that I needed to deal with it at my own pace, and going to stay with my parents would have just been awkward for me, so Tim and I stayed together that week and tried to go about our lives with work and homework. Going back to class after having that week off was tough, but it felt like the right thing to do; it was time, I was ready. NIU had crisis counselors available for anyone who needed to talk. Most of my teachers eased us back into the whole class routine again and were extremely understanding of students who were still having a hard time.  

I didn't know anyone that was killed that day, but I know I will never forget those few minutes when it happened and what I felt over the next couple days. Even when writing this, my heart started beating faster just thinking about those first scary minutes. 

I'm sorry to post such a sad story, but it's getting close to that day again and my mom was talking to me about it today, saying how she couldn't believe that was 3 years ago already. So, on Monday, February 14th this year, please support our Huskies by wearing your NIU gear or just some red and black.....and tell those people in your life that you love them, because that's what Valentine's Day is all about, right? <3

Smoking...

1) WHY?!?!?!

2) Okay, okay, maybe your parents smoked and now you do, too.
3) God gave you a good set of normal lungs, why are you ruining them when I was given crappy lungs?
4) Please stand 10-20 feet away from entrances to buildings (whatever the regulation is). Fine, you have to smoke, but it shouldn't have to affect me.

I know, this probably sounds harsh, but they're my initial thoughts when I think about people who smoke cigarettes. It bothers me. I'm not a super religious person, but my #3 thought is something I think about often when I see people smoking a lot. Recently we've been smelling cigarette smoke coming in through our vents, thinking it was coming from someone smoking in our building. We couldn't figure out where it was coming from exactly, but I found out the other day. Our downstairs neighbor doesn't live in her apartment full time--she comes and goes. Well the other day, about 5 minutes after she came home, I could smell it. I knew it was from her. It was constant all night, never letting up, and when Tim came home from work he said it smelled so bad like it was coming from our place.
This really bothers me. I feel that I should be able to live in my own apartment without being affected by someone else's nasty habit. I don't know what to do to be comfortable in my own apartment! Tim worked for our property management company last year, so he knows they allow smoking in the buildings because they just charge the tenants more for damage when they move out. I don't want to go down and ask her to stop because she's older and not very friendly....plus its winter, so I understand she doesn't want to go outside to smoke. Again, with it being winter, our heat is on a lot, which means it blows up in our apartment every time it kicks on.
If anyone has suggestions of what I can do, I'd appreciate it; it's very unhealthy for me to be breathing in this smoke. Also, if you live in my area and know of an apartment complex that doesn't allow smoking, I'm up for suggestions, too--our lease is up in the summer, so we're looking to move anyway. (Thanks)

I don't mean for this post to sound so negative, and I'm sorry if you're reading this, you smoke and I'm offending you, but it's a huge pet peeve of mine. I just want to be comfortable in my own apartment and to live in a healthy environment!

Snow Days

"Blizzard 2011", as many people have called it, hit over the past couple days and has given me two days off work. Tuesday at school, in my afternoon Kindergarten class, we had 9 students absent because parents didn't want to send their kids to school in such bad weather. Watching the weather getting progressively worse through the day through the classroom window was kind of scary, but it didn't get bad until over night last night. We ended up releasing the students about 1/2 hour early and it took me about double the time to drive home. Once I got home, I knew I wouldn't be leaving until I had to, haha! Just a little while ago, I learned that we will also be closed tomorrow, too. Just like students, I do like having snow days, but they're definitely not as fun as an adult--I'm bored! I should be productive, working on teaching applications, but I've instead watched some CSI and Dr. Phil and will probably be working on finishing Harry Potter 3 (book) later this evening because Tim's working tonight. Here are some pictures taken from inside our apartment...again, I'm not going out til I have to!

View from my patio door--you can tell how deep it is, especially by the handicap parking sign.

My lovely car (blue one all the way to the left) parked in a great spot with no snow on it! :)

The apartment across the parking lot--the snow was blown to cover almost all the way
to the landing. It took them a long time to clear that up!

Building next to ours--lots of snow piles from the lovely wind.

Huge pile across the street from the snow plows.

Gotta love Illinois weather...(3rd largest snowfall in Illinois history) Oh well, at least the groundhog didn't see his shadow today...early spring! :-)

Kinder Quotes

I work as a teaching assistant with Kindergarteners and I love it! Needless to say, they say the funniest things and make me laugh daily! So, I decided to start writing some of them down to share with you! (Hopefully you'll find them as amusing as I do--you just have to remember these things are coming out of the mouths of little five and six year olds!)

**This week is spirit week for the high school basketball game on Friday. Monday's spirit wear was "Sunday's Best Clothing" and a couple of the boys wore ties and some of the girls wore dresses. One of our super-distractable students wore a mustache! He was wearing a hoodie and cargo pants....and a huge black, curled at the ends, mustache! Apparently that's his idea of fancy...or his parents didn't know he left the house with it.

**We were talking in class about how the students have changed since they were babies, so they were sharing stories about things they did when they were babies:
"This is kind of inappropriate....but I pooped in the bathtub."
"When I was little, I was eating a hot dog and it wasn't cut up. My mom thought I was going to choke and she was terrified!!"
"Can you believe it?! When I was born, then it was only a few weeks before Christmas!!"
"A dinosaur took my pacifier." (The teacher asked her if she meant she lost it, or if maybe it had a dinosaur on it...but she was sure that a dinosaur took it. I guess that's what her parents told her!)

**I teach a small reading group and one of the students was counting something and obviously counted way too many.
I said, "Oh man, you can't count! You need to go back to preschool!"
And another boy replied, "Yeah, he's going old school!"
Another assistant in the room turned around from her computer and looked at me to see if I heard the same thing and we both started cracking up. I asked the student to repeat what he said and he goes, "Well, he can't count, so he should go back to his old school."  (Guess it was too good to be true...)

**Today, one boy asked me, "Are you a mom?" And I told him, "No."
A couple girls looked at me and said, "You're not?!?! Why?? Do you just live all by yourself then??"
I answered them, "No, I live with my husband, we just got married."
The girls still kept asking, "Well, don't you want to have a baby? Why can't you just get one?" I was afraid of where this might head...so I just said,"Yes, I want a baby, and maybe one day I'll have one."

**I mentioned this one in an earlier post, but in case you missed it (it's one of the best so far):
A little girl was going to the bathroom and I was standing in the hall waiting for her and she yelled to me, "There's pee and a big poop in the toilet! It's so cool, I did that!" Luckily for her, there was no one else in the hallway but me!

There are many more to come, I'm sure! I'm so glad to work with these little guys, they think everything is exciting and they make my day so much more fun! :-)

"I Have Cystic Fibrosis"

This post is all about what it's like telling people for the first time that I have CF. I can't imagine what it was like for my parents when I was born, having to tell my whole family that I had CF. No one knew what it was, so I'm sure they were all scared. Even today not a lot of people know what it is, so when I do tell them, I have to also explain what it is. When I was little, I feel like me having CF was kind of "hush-hush" and no one really talked about it except around the times I had doctor appointments or Great Strides walks. As a kid, that didn't bother me, I was used to not talking about it or telling people about it. But as I got older, I felt like it was a part of who I am and I didn't like hiding it from people. When I went to college, luckily I had a roommate who was a friend, so she knew about everything before we lived together; that made it easier for me when I had to do my treatments. When other students visited our room though, my vest was always sitting out (and it was still the huge one) so people would be curious about it. I really like to let people try my vest when they see it for the first time, so they know what it does/feels like...and it's really funny to see their reaction when they have it on!

When I met Tim, I was only a few weeks into my freshman year of college. When we started hanging out more, I knew I had to tell him, somehow, about CF but I was so afraid to. I never know how someone is going to react, so I was nervous to tell Tim especially because I didn't want to scare him away! I ended up telling him online because I was too afraid to do it in person. Of course, doing it this way, I couldn't see his reaction, but I later found out that he looked it up online as we were talking about it. I think it freaked him out a little bit, but it didn't seem to change anything between us. It felt like a weight lifted off my shoulders because then I felt like he knew who I was and I wasn't hiding anything from him. He has been so supportive ever since. He always bugs me about doing my treatments and making sure I am staying healthy. He came to the Great Strides walk with me in May 2007 after we were together for about seven months, and helped me create a team. He told his family about my CF and they were so supportive about it and they donate every year to Great Strides. It's nice knowing that his whole family knows about me having CF and accepting me for who I am.

I've always been afraid that when people find out, they're going to treat me differently because I have a chronic disease. I don't want people to think, "Aww, she's sick, I better treat her nicely" or "Aww, she's sick, maybe I shouldn't get too close." I don't know what people think when they hear I have CF. I'm never going to say to someone, 'Hi, my name is Colleen and I have Cystic Fibrosis.' To me, I'll tell people when it comes up--they see me taking my enzymes before I eat and ask about it, or they're coming over and they see my Vest. Sometimes if I don't know a person too well and they hear me coughing and ask if I have a cold, usually I'll just tell them yes because it's just easier. To me, the hardest people to decide to tell are co-workers. I worked at Menards for a few years and I finally worked up the courage to speak at one of our meetings about CF and Great Strides to try to get more people involved. After that, I didn't notice any difference in how people treated me, and honestly, I'm sure a bunch of people forgot after a while.

Now, working in the school district, I'm debating with myself again if I should tell people or not (the ones who are my facebook friends probably now know from this blog). I was talking to my principal one day (who is amazing!) about taking a day off work for a doctor's appointment and she asked if everything was OK, so I told her that I had CF and that I have to go to the doctor every three months. She was surprised because she had known me for a year and had no idea. She asked a couple questions about how I feel and if I'm doing well and that was that. A couple days later, I brought up the Great Strides walk to her and we decided to involve the whole school in fundraising. A couple weeks ago, I brought it up at the staff meeting and later in the day someone asked me who I knew with CF and why I wanted to raise money for it. I told her that I had it, and again, she was surprised too because this was the school I did my student teaching at the year before and subbed a lot, so I had really been there for a year and a half, and she had no idea either.

It kind of makes me feel good that people can't tell, because that means I just seem like everyone else (who probably just coughs more than everyone), which is what I want. But at the same time, it feels good when people know about my CF because it helps them know me better. I'm interested in what peoples' reaction was when they found out about me, or when I told them. If I didn't have CF, I don't know how I would react if I found out someone close to me had a chronic disease. What did you think when you found out??