Thursday, December 27, 2012


Well, it finally happened. I got the flu for the first time in years. Let me clear the air before I begin. I did get a flu shot. I apparently picked up a strand not covered by the vaccination. Even though I got sick even with the flu shot, I will always encourage people to get the shot.... especially those people who are high risk or who are close to someone who is high risk.

Being high risk, I never miss my flu shot, and up until this year, it has paid off. Once I realized I might have the flu, I went to my doctor so that I could start Tamiflu. After about a week of being sick, I started to feel a little better. That was short lived, because I took another dive. I ran a low grade fever almost everyday, and all of my energy was completely zapped out of me. I had a PFT done that second week of being sick. It showed that my numbers were down to 40% which is not good at all.

Shortly after, my doctor called and informed me that they wanted me to do IV antibiotics. My history with picc lines (IV that you can have at home) has not been great, so I was not thrilled to have to do it again. I had mine put in last Wednesday. Unfortunately, the only antibiotic that can be used to treat MRSA which is what I always culture in my lungs, tends to cause big allergic reactions in a lot of patients. Because I have never been on this antibiotic, no one here would give me my first dose for fear that I would be allergic. So, on Friday, I had to drive the 2 1/2 hours to Nashville to see my nurse at Vanderbilt for the first dose. Luckily, I had no reaction, and we left Vanderbilt a couple hours later with a weeks worth of my antibiotics.

This is one of my IV infusions. It's called vancomycin, and it takes a little over an hour to complete. I have to do that 3 times a day. 6:00 am, 2:00 pm, and 10:00 pm.

I felt horrible for the first 5 days or so on the antibiotics. I was weak, coughing up a storm, and all together miserable. Saturday morning, I woke with severe pain in my right side. Soon, I realized the pain was coming from my ribs. I had bruised a rib coughing in my sleep that night. Christmas Eve and Christmas Day were filled with fun and family, but I felt horrible both days. These past 2 days, I have finally started feeling a little better. I have more energy, and I'm actually able to eat food. For the past 4 weeks, I have had no appetite at all. I have lost a lot of weight as well, so having my appetite back is much needed! My rib is still in a lot of pain, and I'm coughing a lot more than I usually do, but I'm getting there.

Eldon and I on Christmas Eve. I'm pretending I feel fine.
I'm really hoping to be back on my feet by New Year's. It's a little depressing to be sick during the holidays. My last day of antibiotics is supposed to be January 2nd. I also have a follow-up PFT that day to see if I am improving at all. Fingers crossed!

Wednesday, November 21, 2012


I am so thankful for the people who love me so well. My birthday was on Friday, and I was blown away by everyone's kind words. My students were so cute. They sang "Happy Birthday" many times with the encouragement of another teacher. I received many handmade birthday cards complete with illustrations. One of my students even gave me a pencil as a birthday present!

My family and friends showered me with love and birthday wishes, and I couldn't have asked for anything more! My husband was supposed to come home Friday night around 8:00, and I was so excited to see him. Thursday, as I was getting ready for bed, he walked in the front door. It was definitely one of the best birthday gifts ever!

Fast-forward to today... I had my clinic appointment at Vanderbilt. I had originally set my goal for my FEV1 at 70%, but after starting my new job, I had some trouble getting into the routine of taking care of my health. I've also been working hard not to catch all of the little bugs my students keep bringing in. Long story short, I thought it might have dropped a little, and I was right. It dropped from 60% to 53%. I also lost 8 pounds. Those two things concerned my doctor a little bit, so he decided to put me on some antibiotics. I am supposed to go have another PFT once I'm finished with the round of antibiotics to see if it helped at all. I hope that it does something, but I know it won't do anything if I don't step up my treatments and exercise. I feel like I sound like a broken record, so it's time to put my words into action.

In happier, less stressful news, tomorrow is Thanksgiving! I'm so looking forward to spending time with family and just enjoying each others company! Not to mention, I get to have my husband home with me for five whole days! :)

Happy Thanksgiving!!!

Tuesday, November 6, 2012


Today, I am thankful for the right to have a say in my country's future. I voted two weeks ago, but I hope that everyone else who can vote does so. Take advantage of your right to vote! There are so many places that do not allow the people to decide on who should run their country. Why would you waste this opportunity?

Tuesday, October 23, 2012

Counting Down

I am a big believer in the idea of enjoying where you are instead of trying to rush onto the next thing, but I am guilty of not being completely content at the moment. The countdown is on for a couple of big events!

My next clinic appointment is the day before Thanksgiving.... 28 days from now. My goal is set at having a PFT of 70%. I've got to step it up to make sure I make it to that goal. I need to hop back on exercise train, because I have definitely let that ball drop. I have a very hard time finding the time or the energy to work out after working so much. I'm just going to have to suck it up. I tend to feel guilty because I feel like it should be much easier to motivate myself to do it. There is another reason 70% really needs to happen. I would love to be able to postpone my next appointment until spring break so that I don't have to miss work for it. Unfortunately, that is 4 months between appointments, and they don't like to let patients go longer than 3 months unless they are extremely healthy. Healthy... here I come. :)

Next countdown... Only 7 weeks until my husband finally graduates and gets to move back to Knoxville with me! I am more than ready to be done with this long distance marriage stuff. It makes things so much more difficult. I just can't wait! :)

Now, this one is kind of silly because of how far away it is, but I can't help myself. 28 1/2 weeks until the Great Strides Walk! :) I'm so excited about it, because I have some exciting things planned for this year's walk. Last year, my team was the top fund raising team at the Knoxville walk, and I have goals to raise even more this year. I'm also hoping to have a really large team because I have a whole new group of teacher friends to join me. :) I have already started thinking about the next "Kayla's Krusaders" shirts! I can't wait. I'm just not sure what color to make them. If you have any suggestions, lay them on me.

I'm definitely counting down to the end of this week. I get evaluated for the first time on Friday, and I am definitely a little nervous and stressed about it. Once the weekend hits, I will be one happy teacher, because all of that weight will be lifted off my shoulders. 

Finally, if you know me, you know that I am obsessed with Christmas and all the decorations that come with that time of the year. I'm not far off from starting to countdown to when I finally get to start putting up decorations! I'm that ridiculous person who sees the Christmas decorations at Hobby Lobby in July and gets  excited.

On that note, here's to enjoying where you are and living in the moment. ;) 

Friday, September 21, 2012

6 Weeks

Wow.... I've been teaching for 6 weeks already! I can't believe it... It has gone by so quickly! It has been extremely overwhelming but so amazing at the same time! I love teaching so much, and I can't believe how much I enjoy being around my kids.

In other areas of my life, things have been a constant crazy. I am currently living in a house with my sister taking care of 5 dogs. I moved in Labor Day weekend, and we are still working on getting used to having so many dogs. Eldon is still living in Murfreesboro while he finishes up school. He will be done in December, but until then, we are doing the whole "long distance marriage" thing. It has definitely been rough, but since we did long distance for 3 years while we were dating, the fact that it's only a semester has been helping me get through it.

Now that I've gotten my school life a little more put together, I need to really start focusing on my health again. It has been a struggle settling into a routine, but I can't put it off anymore. I'm signed up to run a 5K on October 6th, and I have got to get my act together if I am going to be able to run it at all. My next clinic appointment is in November, and my goal for my lung function is 70%. That is a really tall order, and I need to put in a lot of effort, time, and energy into my health.

In other news, I just registered to do the Out Run CF virtual race again! It will be on November 22, and you can run any where and anytime you want! That's my kind of race. :) There is so much less pressure. If you are interested in participating, just click HERE.

Happy Friday everyone!!!!

Saturday, August 18, 2012

One Week Down

Well, I finished my first week of teaching. I have never been so tired in my life! I am completely exhausted! That being said, I absolutely love it! It's definitely going to be a learning process. I already have some new ideas about how I'm going to do things differently this week. I'm excited to be teaching, but I was really glad to see the weekend. :)

In other news, Eldon went back to Murfreesboro leaving me here in Knoxville. We are going to be doing the long distance marriage thing until he graduates in December. I'm not excited about it, but we've had a lot of practice with long distance. Only 119 days until he gets to move back! :)

This was a short update, and I apologize, but life's a bit crazy and busy right now!

Happy Saturday!

Wednesday, August 1, 2012

Clinic Appointment Today

My clinic appointment was today, and I have to say that I was a little nervous about it due to the lack of exercise in my life lately. The good news is, I was wrong to be worried, because my lung function actually increased! In May, my lung function had fallen to 52%. It was extremely disappointing, but time had gotten away from me with all of the new stuff popping up in my life. The summer continued to follow the same pattern of being super busy, so I wasn't sure what to expect when it came to today. So, the results of my PFT today was..... drum roll.... 60%!!!!! I am back on track!

As I already mentioned, I have not been exercising like I should lately. I have a plan in place to fix that. I signed up for my first 5k run! It's a color run, so it will be a lot of fun, and it is October 6th. I figured that if I went ahead and signed up for one, I would have no choice but to train for it! To go along with that, my goal for my next appointment is 70%. 10% is a big jump, but I think I can pull it off if I really put everything I have into it! My next appointment is November 21st, so I have plenty of time to work on it.

Happy Wednesday!

Monday, July 30, 2012

The Beginning of Classroom Setup

Today was the first day that I have gotten to go into my classroom. I thought I had a good idea about what I wanted, but once I got in the room, it was much more difficult to visualize than I thought it would be. It's hard to start from scratch and to come up with a whole new idea for a classroom using very little past experience to get your ideas. Here are a few pictures of the classroom before we really got to rearranging everything:

It started to get a little bit easier once we started moving things around and getting a feel for where things worked well. Here are some of the pictures of the progress we made during the day.

That's how I left it today, but I'm going back tomorrow morning to work some more work in. I also made a nice list of things I need/want for the room. It's really hitting me that I actually have a classroom after searching for a teaching job for 2 years! I am so nervous and so excited about it!

Happy Monday, everyone!

Saturday, July 28, 2012

It's been 2 months.... Oops!

Wow... It's been a couple months since I have posted anything! I apologize for that. Life has been very crazy. I have been gearing up for this school year and finally being a teacher. For those of you who don't know, I am going to be teaching 4th grade at my dream school in Knoxville this year. The craziness has come from the fact that I have been living about 2 1/2 hours away from Knoxville in Murfreesboro. That's where I went to college, and my husband is still going to school there. He won't be graduating with his degree in teaching until December. So there has been a lot of transitioning going on in my life. I have moved back in with my parents while Eldon has moved into a tiny one bedroom apartment in the Boro. We will be doing a little bit of long distance marriage which will be fun, but we had 3 years of long distance dating before we got married. We've had a lot of practice with it.

In teaching news, I went to a 2 day new teacher training Thursday and Friday of this week. It was long and very informational. I left feeling very excited and slightly overwhelmed, but I think that's to be expected when starting a new job with so many responsibilities. My classroom has been cleaned and is now cleared for me to go in. I will be going there Monday morning and finally start to set up my classroom! I am so excited about that! I've been waiting for it all summer! :)

With all of the stuff I have been doing this summer, I have to admit that I have not been doing everything I can to keep myself healthy. That being said, I have been a lot better than I used to be. Now that I am settled in again, I plan to pick my schedule back up. It's going to be hard with all of the things I will be doing, but I am going to pull it off! I'm hoping that my slacking doesn't hurt my lung function too much, but I will find out the damage this week. I have my clinic appointment Wednesday. We'll see how it goes, but no matter what the outcome of my PFT, I am still going to have the same attitude about what I need to do. The only person responsible for my health is me, and if I fail, I let a lot of people down. I have a lot to stay healthy for.

So that's just a brief update on life right now. There will be a lot more posts in the coming weeks, because there will be a lot of changes in my life.

Thanks for reading! :) Happy Saturday! Enjoy the Olympics!

Tuesday, May 29, 2012

One Whole Year!

Yesterday was our One Year Anniversary! It's so hard to believe it's already been a year. People warned me that the first year would be one of the most difficult, but I have been blessed by having the opportunity to marry my best friend. It has been an amazing year, and I wouldn't trade it for the world! It worked out really well that our anniversary fell on Memorial Day this year, because neither of us had to work, and Eldon didn't have his class. We got to spend a whole day together! That's a very rare thing for us, and it was wonderful! We went to dinner at one of my favorite restaurants, Cheddars and then to see The Avengers (which was a pretty great movie). Then we came home and ate our surprisingly good year old cake! :) It was a perfect day! I'm looking forward to the years to come with this amazing man!

Saturday, May 12, 2012

2012 Great Strides Walk

Today was the Great Strides Walk in Knoxville, and it was amazing! It was definitely one of the biggest turnouts I've seen in awhile. There were a lot of team t-shirts, and it was so fun seeing everyone supporting those of us with CF. My team had a total of 25 people and 2 dogs! That's the most we've ever had! I felt so loved and supported!

Before the walk started, my family and I were recognized for continuing to participate in the Great Strides Walk every year and for putting in so much hard work into raising money. They informed us that in the last 7 years, we have raised over $50,000! That's only possible thanks to our very generous family and friends. And that's only a fraction of the years we have been participating. My parents started raising money the year I got diagnosed. That was 18 years ago! I'm so thankful to have parents who have instilled in me the importance of being involved with raising money and awareness for cystic fibrosis. In my mind, if I want to see a cure, you better believe I'm going to do everything in my power to make that happen as soon as possible.

Kayla's Krusaders got to start the walk! Here we are getting ready to go.

Here are a couple of pictures of the actual walk.

As of right now, Kayla's Krusaders has raised a little over $7,000 with a little more expected to arrive late! I can't even begin to express how thankful I am that I have so many generous people in my life! Thank you to everyone who made a donation or bought a t-shirt! And thank you to everyone who came out to the walk to show their support. Here are a few more pictures of Kayla's Krusaders.

Friday, April 27, 2012

Job News

It's been awhile... Life is crazy busy, but I do have some extremely exciting news! I have been applying for teaching jobs in Murfreesboro for 2 years now. This year, Eldon and I decided that I should expand my job search to Knoxville since that is where we want to end up anyways. I was a little hesitant, because he doesn't graduate until December which would mean that there would be a chance of us having to do long distance again. We had a long discussion about it and decided that since we did 3 years of long distance, we could handle a few months if I happened to get a job.

I had a few interviews at a couple of Knox County schools, but there was only one school that I really wanted to get a teaching position at. My sister-in-law works at the school so I had volunteered there and used her class for some of my assignments in college. The school quickly became my dream school because I loved everything about it. I love the student population and the staff. Long story short, I got a job offer at my dream school on Monday! I will be a 4th grade teacher for the 2012-2013 school year, and I could not be more excited!!!

In other news, it's the end of April which means the Great Strides walk is approaching quickly. There is still time to make a donation, and every little bit is appreciated! If you are interested in helping out just click here. It will take you to my personal Great Strides page.

Also, next week in my CF Clinic appointment. I have no idea where my PFT's will be this time. If you recall, my last visit was amazing. My numbers were up, and I was super excited. Since then, life has been crazy, and allergies have been awful. I'm hopeful that they won't go down at all, but I guess we will see.

Happy Friday everyone!

Wednesday, April 4, 2012

April Already?

I cannot believe that it's already April! 2012 is going by fast, and my goal of writing more blog posts has gotten away from me a little. Things have been crazy busy lately. I am still looking for a teaching job, but I have opened up more options for myself. I'm hopeful that the 2012-2013 school year will be my first year in a classroom. So I have been working on applications and other things involved with finding a job which has been overwhelming, scary, and exciting all at the same time.

I got in my first order of t-shirts, and they look great! I already have 4 more people who want to get a shirt. I have to have a minimum of 12 orders to make another order. If you would like to order one, please let me know. They are $20 each with any extra money going straight to the Cystic Fibrosis Foundation. Once I get everyone's money from the first order, I will be donating a little over $200 thanks to the left over money! So please think about getting a shirt. It really is making a difference, and you get a fun shirt out of it. :)

If you aren't interested in a shirt, you can also just make a donation to the CFF. You can do that by clicking on the link to my donation page. Kayla's Great Strides Page Please do not think that the amount you can afford to donate is too small. There is no such thing. It all adds up and adds tomorrows for those of us who have the disease. The walk is May 12, and I still have quite a ways to go towards my goal.

Happy Wednesday everybody!

Sunday, March 11, 2012

Interview with Robert Beall

Here is an interview with the president of the Cystic Fibrosis Foundation. He gives a little input about their methods of getting things done in the research community. Straight talk with... Robert Beall

Sunday, February 26, 2012

Shampoo, Rinse, Repeat

 I know I am repeating myself all the time with all of this fund-raising stuff, but here is why. Most of my goals in life surround the sole purpose of beating cystic fibrosis. I want to have children, live a long life, exercise, raise my PFT scores, etc... How can I consider myself a warrior against this awful disease if I am only fighting it in my personal life? I want to fight CF in every way possible. I want my hard work to go towards the health of more people than just myself. I want the cystic fibrosis community as a whole to benefit from my efforts. That is why I put everything I have into raising money for the walk. That being said, here are some more of my efforts being put forth. :)

I am truly blessed to be surrounded by people who really care about me and making a difference in the CF world. I have been blown away by the generous donations that have already come in from my friends and family. I have already raised $1,078!!! That is huge! This time last year, I only had $685 raised. I am extremely proud of what I've accomplished so far, but as usual with me, I'm not anywhere near done. I have set a goal of $3,000 for myself, and $7,000 for my team. So there is still a lot of work to be done.

So what can you do???

Do you have maybe a couple of dollars that are unspoken for? If you do, click the picture below and find the "Click to donate" button at the top of my donation page. When I say that no amount is too small, I truly mean it. Every little bit helps and adds up. Almost 90 cents of every dollar go straight to funding research to find new drugs, treatments, and maybe one day, a cure for those of us who have cystic fibrosis. Share the link with your friends and family to see if they would like the opportunity to make a difference.

Want to join my team and fund-raise yourself? Click on the picture below that will take you to my donation page. Find the "Join my team" button. You can set a goal for yourself and begin asking those around you for donations.

Want to join my team and walk, but you don't feel comfortable fund-raising? Click on the picture below. Find the "Join my team" button. It will automatically set a goal for you to raise, but you don't have to raise that. It is their way of trying to encourage everyone to raise money.

You can also come to the walk even if you haven't registered. Last year, my team had 10 people at the walk. I would love to double that. So, if you don't have anything going on May 12, at 10:00 in the morning, come out and support my team! :)

Finally, I am ordering t-shirts this year for my team, Kayla's Krusaders. This is something I have wanted to do for years, and I am so excited about actually doing it this year. I am charging $20 for the shirt. The more shirts I order, the smaller the actual cost will be. If the shirts cost less than $20 a piece, I will be donating the extra money to the Cystic Fibrosis Foundation. If you would like to order a shirt, please let me know. I will be ordering the shirts at the end of March.

If you have already made a contribution to my cause, I thank you from the bottom of my heart. I can never really express how truly grateful I am for all that you have done. If you are going to be walking with me in May, I am so excited that you will get to experience something that is so important and close to my heart. If you are still on the fence about making a donation, keep thinking about it. If you have any questions about where your money is going or what exactly all of this is about, please feel free to ask. To sum all of this up... Thank you! Thank you! Thank you!

Saturday, February 18, 2012


Alright everyone, here is an opportunity to get some money for the Cystic Fibrosis Foundation. All you have to do is click on the link, and vote for Kevin Willard in the East Region. The coach who wins gets $100,000 donated to his charity of choice. Coach Willard has chosen the CF Foundation. So, take a couple minutes out of your day to vote everyday. Voting ends Feb. 27, and Coach Willard needs a lot more votes to have a chance at winning.

Also, check out this amazing story about high school students who dedicated their time and effort to raising money for the CF Foundation. Here is the article.

Finally, you know I have to. If you are interested in making a donation to support me in the Great Strides Walk coming up in May, just click the Great Strides picture to the left. It will take you to my donation website! Thanks everyone!

Monday, February 13, 2012


This past weekend was such a wonderful weekend! As I have for the past 3 years the weekend before the Valentine's Day, I went to the Cure Finders' "A Special Evening... A Special Cause." It is a fancy dinner and dance complete with silent and live auctions in Pigeon Forge. I always enjoy dressing up to go to this fund raiser, but the best part of the weekend came earlier that day.

The guest speaker for the dinner was Richard Mattingly who is the Executive Vice President and Chief Operating Officer of the Cystic Fibrosis Foundation. Saturday afternoon, they had a meet and greet luncheon with him. Mr. Mattingly spoke about the new developments and research going on with cystic fibrosis. He spoke in detail about where the money that I spend my time and efforts raising have been going. They are dishing out millions of dollars to get major drug companies to actually invest in such a small disease. It is a big risk for companies to take on a disease that affects a total of 70,000 people worldwide, but money talks. And that is exactly what has been working.

This is a clip from an article that appeared in the Wall Street Journal:

"To further entice these small firms, the CF Foundation offered millions of dollars to do the drug discovery work. “We took the risk” so the companies would start and projects would develop the momentum, Beall says. The foundation has now given or committed to give $315 million to companies for drug research."

Here is another one from The Boston Globe:

"The Cambridge biotechnology firm FoldRx Pharmaceuticals Inc. will receive $22 million from the Cystic Fibrosis Foundation to develop and commercialize drugs aimed at treating the fatal genetic disease, a disorder of the lungs and digestive system that afflicts 70,000 people worldwide."

Over the years, the Cystic Fibrosis Foundation has gone out of its way to makes sure that these drug companies have no reason to say no. After the success of Kalydeco, Vertex has begun working on a combination of that drug and another called VX-809. This is a combo built for those with the delta F508 mutation (ME!!!). The CF Foundation has dished out more money to get the process to go quicker. Here is the kicker... Right now, if everything goes well with the trials for Kalydeco and VX-809, they are predicting it to get through the FDA by 2016!!!! There is a lot that has to go right for that to happen, but that is huge! Even if it doesn't work that way, they are on their way to finding something that does work! I have never been so hopeful for my future!

With all of that being said, the money that my friends and family have been so generously giving over the years, has been going exactly where it should. Money is the only way we get closer to a cure, and if you would like to contribute to that, click on the link below or the one to the left.

Friday, February 3, 2012

And the Fund Raising Begins

It is that time of year again. I am beginning my fund raising for the Knoxville Great Strides walk benefiting the Cystic Fibrosis Foundation. 2011 was a very successful year for the walk in Knoxville. A total of $108,000 was raised, and the goal for 2012 is $125,000. My team raised $6,105 in 2011, and I have set the goal for this year at $7,000. I can't reach that goal without your help. If you would like to contribute to my goal, just click on the link below or on the link to the left.

When you make a donation, almost 90 cents of every dollar go straight to funding research to find new medicines and treatments, and hopefully, one day, a cure. There have been huge steps forward lately in the fight against cystic fibrosis, and that has a lot to do with all of the donations that have been so generously given. Last year was the first year that there were more adults alive with CF than children. That's huge!!! That means that because of all the innovative treatments now available to those with the disease, we are living longer. Also, just this week, a new drug that treats the actual cause of cystic fibrosis instead of just the symptoms. It is called Kalydeco, and it is truly a first. Kalydeco only benefits about 4% of people with CF which I am unfortunately not a part of. Researchers are working on a combination of Kalydeco and another drug to treat those who have the most common mutation.... ME!

Every donation is greatly appreciated, and no amount is too small!

Last year, my team had 10 people at the walk, but I would love to see that number increase! You don't have to donate or raise money to be a part of my team. Everyone is welcome! If you are interested in joining me at the walk, let me know, and I can send you some more information.

If you are interested in joining my team and raising money, just click on the donate now link to go to my donation page. Then you click on join my team, and it will guide you through registering and setting a fund raising goal.

Finally, I am ordering shirts for my team this year. I am charging $20 for them, and any money left over after paying for them will go straight to CF. I will be ordering them at the end of March, so if you are interested in getting one, let me know. Here is what they look like.

I hope everyone has had a wonderful Friday! Have a great weekend, and enjoy the Super Bowl! :)

Thursday, February 2, 2012

Liebster Blog Award

This is a blog award that Jenna gave me. Liebster is German for favorite or dearest. It means a lot to me that she reads and enjoys my blog. With the award comes some rules.... so here we go:

1) Acknowledge the blogger who gave you the award by linking back to them. 
That was Jenna, and here is the link to her blog.

2) Give this award to 5 other bloggers who have fewer than 200 readers. Let them know through a comment on their blog. They are listed below.

3) Post this wonderful award on your blog. See cute badge above. If you're confused about how to do this, simply right-click on the image and save it; then, upload it as you would normally add a picture to a blog post.

4) Bask in the glory bestowed upon you and appreciate all the amazing bloggers out there.

Here are the winners that I have chosen:

  1. *Live*Laugh*Love*Breathe*- Colleen is another Cyster sharing her story about how she is living with cystic fibrosis. Her posts are so great to read, and she is incredibly motivating.
  2. Jamiebug- Jamie is an amazing inspiration. She received a lung transplant a little over 4 years ago, and her story blows me away.
  3. Breathe Easy- Jessi is a Cyster who is fighting CF with all she has. She is on the waiting list for a double lung transplant, and she is another person who serves as a huge inspiration to me. 
  4. Notes to Self- My good friend, Lacey is spending the year in Uganda, and this is a blog about her adventures. She is adorable, and her story is really great! 
  5. Life with my Boys- Marla is my sister-in-law, and she shares stories of her life with my two nephews.

Wednesday, February 1, 2012

Does Hard Work Pay Off?

Today was my clinic appointment. As you may recall, I set a pretty hefty goal for myself. I decided to work out like crazy and stay compliant with all of my treatments and medications. I was hoping to achieve a 60% on my FEV1. Well, I have been working out every day. I bought a treadmill that I have been using some (I could definitely up the treadmill usage), and I have now been 100% compliant for 93 days. So.... did the hard work pay off?????

At my last appointment in October, I was at 54%. Today, I blew a 63%!!! The work paid off, and I feel fantastic! I have never been so proud of myself or of my PFT, but I'm not stopping there. I already have a new goal in mind for my next appointment. I am shooting for 70%. My doctor thinks that it is possible, and I have a really good feeling about it.

My doctor asked me during my appointment today what had made me decide to work this hard to get my numbers up. I had to think about that, because there isn't just one reason. There is a whole list of things that has led to my motivation.

  1. Child-- I want to have a child. I want the experience of being pregnant and of holding my baby for the first time. I can only do that if I am healthy enough to go through a pregnancy. 
  2. Eldon--I have an amazing husband, and frankly, I am not ready to leave him yet! I want to spend as much time with him as possible. I owe it to him to try to stick around.
  3. Family and Friends-- I have a huge amount of people supporting me in my fight against CF. I would be letting them down if I didn't fight with all I had. 
  4. Quality of Life--When I work out and do all of my treatments, I feel so much better. Yes, I spend a ton of time making sure I stay healthy, but the pros outweigh the cons. 
  5. Accomplishment-- Giving myself a goal to work towards and meeting that goal makes me feel like I am really accomplishing something. 
  6. Motivating Others-- If someone reads my story and sees the difference that some dedication can make, maybe that person will be motivated to do the same thing. 
  7. Beat CF-- I want more than anything to beat CF. I want to live a long life.... not a long life for someone with CF. 
  8. New Treatments-- I want the opportunity to see what exciting new treatments are in store for those of us with CF. 
  9. Raise Money and Awareness-- I want to see the day when I tell the average person I have cystic fibrosis, he/she knows what I am talking about. Most of the time, there is a need to explain what CF is if it comes up in conversation now. I would also love to raise as much money as I can so that we will see a cure.... maybe even in my lifetime. 
There are probably more reasons, but those are the ones that come to mind right away. So I will work as hard as I can to get my lung function as high as possible. When my lungs reach their limit of improvement, I will work as hard as I can to keep my lung function there. While I have my sights set on 70% for May 2nd, my sights are set much higher for the more distant future. We will just have to see how high my lungs can go. :)

Tuesday, January 31, 2012

Good Things Coming

There is super exciting news in the world of cystic fibrosis today! Kalydeco, which is the first drug to actually treat the cause of CF instead of just the symptoms got approved by the FDA! It is only effective for 4% of those who have CF, but it is definitely a huge step in the right direction. Can't wait to see what they come up with next, and I have high hopes that it will be for those of us with the most common gene mutation, delta F508. My hopes are high.

This is the article from the Cystic Fibrosis Foundation. FDA Approves Kalydeco (VX-770) — First Drug That Targets the Underlying Cause of CF - CFF

This is the article from the FDA.

This is the article from Vertex which is the company that created Kalydeco.

Tuesday, January 10, 2012

Pretty Incredible

This is a woman who has a sister with Cystic Fibrosis. In honor of her, she ran 1,000 miles from St. Louis, Missouri to New York City in 65 days last year. She did it all to raise money and awareness for CF. Pretty incredible!

Sunday, January 8, 2012

Progress and Potential

I mentioned in my last post that I wanted to do more blog posts this year, so here's my first step towards that. This week has worn me out! I finished my first week of P90X, and every muscle in my body is sore which I love, because it shows me how hard I worked. I can't honestly say that I'm looking forward to week 2, but I am looking forward to being able to say that I did it. I'm working my butt off because my doctor's appointment is in 23 days. I want my lungs to be in the best shape possible! In that same area, I have now been 100% compliant for 69 days! I have never been so proud of myself, because staying compliant is much more difficult to me than anything else. I have always struggled with being willing to put the time into taking care of myself, but now that I finally am, I feel so much better. Amazing how that works. Ha! My husband told me the other day that he was proud of me, and I just ate that up! The support that I get from Eldon is phenomenal, and I really don't know that I would be where I am now without him. I am doing this almost more for him than for me. I owe him my healthiest self for as long as I can give him that. Plus, we both really want to have a baby, and I will not do that if my lungs are not in good enough shape. There is so much to work for and so much to look forward to. This is why 2012 is so exciting to me! There is just so much potential.

Thursday, January 5, 2012


I'm a few days behind on this one, but life has been a little crazy. 2011 had a lot of ups and downs for me, but it was one of the most life changing years so far. I got married and made major changes when it comes to taking care of myself! I couldn't be more excited about 2012 though. I have high hopes and higher goals. I decided that I would post some of my resolutions on here so that I will hopefully be less likely to fail. Here goes nothing:

  1. Keep 100% compliance with my treatments
  2. Workout everyday 
  3. Use my treadmill everyday (That can be for running or walking)
  4. Complete P90X (I fell off the train for a few weeks, so I'm starting over, and this time, my sister is doing it too. That way we can hold each other accountable.)
  5. Find a teaching job
  6. Read 50 books in a year (This one is hard, but I love to read. I really want to spend more time reading good books. )
  7. Be more artsy (crafts, DIY projects, paintings)
  8. Raise my FEV1 to 70% (atleast... the higher the better)
There are some others, but I won't bore you with those. These are the most relevant ones for my blog. I'm so excited about what is to come, and I really hope that I can start seeing a difference in myself.

Right now, I have kicked everything into high gear, because my next doctor's appointment is February 1st. My goal for that appointment is to have my lung function up to 60%. That's a big jump from where I was in October, but I think it is possible. I am anxious to see what all of my hard work has done for my lungs.

On another note, I would like to do more posts this year, but it is sometimes difficult to come up with topics to write about. If you have any questions for me or ideas for a post, please let me know. I would love some input!