Friday, May 31, 2013

The 4 Lessons of Cystic Fibrosis

Guest Post by Katie Broekema

Hello everyone! My name is Katie Broekema, I am a 22 year-old from Michigan who has Cystic Fibrosis. I am going to share a little bit of my Cystic Fibrosis story with you over a two-part guest blog, so after this post stay tuned to see the role Cystic Fibrosis plays in my life currently.

I was diagnosed with Cystic Fibrosis as a young child, but I never really knew what that meant until I was in high school. I was very healthy as a child; I did not even have a nebulizer until I was 16. My parents have always made a special effort to let me live a normal life, including forcing me to run cross country and track for my high school. I did not realize it at the time, but this was the best thing they have ever done for me. It has shaped the rest of my life, and the teams I have been on are the largest influences in my life. It is because of these sports that I have met my best friends, and it was with their help that I am the person I am today. The life lessons and friendships I have gained through this are unparalleled. I ran cross country and track in high school and in college, and this experience has been life-changing. I have had the most amazing support team, and they helped me become the athlete that I am today, with a 5k PR of 19:47 and 10k PR of 42:36. During this time, I have learned a couple lessons that I want to share with you because of their direct application to life with Cystic Fibrosis.

The first lesson is that you need to be willing to put in the work. Just like with running, handling your Cystic Fibrosis takes a lot of time and effort. There are definitely days in college that I did not want to get up and go to 6:00 a.m. practice, but I needed to. Doing the extra work is what made me be a better runner and a real competitor. Similarly, taking that extra time to do ALL your medication and treatments is necessary in order to be at your peak of healthiness. Just like with running, when you put in the extra effort you give yourself the opportunity to succeed. When you do not put in the effort, you rob yourself of the chance to see what can happen. I am not trying to sound pious, preaching this from the point of view that I always do my medicine, because that is not true. In fact, I didn’t do my medicine all the time during my freshman year of college and I got what I deserved; a 2-week hospital stay over Christmas. I have made it my goal to never be in there again because of something that I can control. I know that I will most likely need to go into the hospital again, but I also know that it will NOT be because I was not doing what I needed to in order to stay healthy. Unfortunately there is not a magical formula you can follow to run giant PR’s or to keep yourself super healthy, but doing what you are supposed to at least gives you a fighting chance.  

Along with the lesson about work follows the idea of trusting those who are in charge of you. For running, this is the coaches. Too often I have seen athletes who think that the coach is full of crap, and that they know better so they will do their own thing or not do all of what the coach asks of them. NO! If you are in a position where you do not trust your coach and believe in the running strategies, you need to seriously consider your position on that team; it may not be the right place for you. Similarly, in the healthcare setting doctors and the medical staff are your “coaches”. If you do not agree with the treatments and medications that are being prescribed, then you need to consider finding another place to go. It is not good for anyone if you do not do your treatments, for you or your medical staff. When you say you are doing a specific treatment, but really you are not, you are hurting yourself and the Cystic Fibrosis community as a whole. Medical professionals rely on us to tell them what does and does not help. When they see no change in you and the doctors think that you are doing a treatment but really you are not, it can cause them to doubt the treatment.  That treatment can make a difference is someone else’s life, or even yours, but you were unwilling to give it a chance.

This leads me to the next lesson that I have learned, which is to always believe in yourself. This is YOU we are talking about, who knows you better than yourself? Therefore you should ALWAYS make the final decision about your medical treatment or coaching regimen. This was a running lesson that I needed to learn the hard way. I struggled during my college career running because I did not listen to my body. I spent so much time trying to keep up with the rest of my team that I was not able to compete well during the races. An injury finally forced this rest time upon me, and it paid off when I ran my best time in both the 5k and the 10k during my senior track season. With running, this was something that was my fault. I was in a situation where my coach did not know what was going on with my body. How could he? He does not have Cystic Fibrosis; all he knows is what I tell him. Now apply this to your health in the doctor’s office. The doctors do have an idea about Cystic Fibrosis in general, but they do not know what is going on with you; what would work best for your lifestyle and for you personally. They can only learn this through a discussion with you. As an example, my doctors wanted me to be on Tobi every other month while I was in college to help keep my lungs clear. That is what the medication is supposed to do, in theory it seemed like that would be a good idea but it just did not work with my schedule. I was too busy to commit to that much treatment; and making the commitment actually made me sicker rather than healthier because I needed to sacrifice sleep to do the medication. After having a conversation with my doctor, we decided together that the best plan would be for me not to do the treatment. Without them knowing my schedule and how it made me feel, my incompliance would have seemed like an act of defiance when in reality it was a recognition on my part of what I was able to do at the time.

This leads to my final lesson, find a group of people who believe in you and are willing to be your support group. For me, my running support group and my Cystic Fibrosis support group are one and the same. This is actually very emotional for me to write this now, because they are some people who have been so significant in my life that I know I will never able to thank them enough for what they do for me. I challenge you all to find a group of people like this in your life. Find those people who push you, and make you better than you are now. They are the ones who will help make you strong and able to push past the difficult parts of this disease. This group wants you to succeed, and you want to succeed for them. Because I know once you find a group of people like this, you will be able to grow to your full potential in whatever you do.

These lessons have been instrumental in my life. Although some lessons may have taken me longer than others to learn, I know I am where I am today because I learned how to put in the extra work, I began to trust in my doctors and my coaches, I believed in myself and my abilities to discern what is best for me and I had an amazing support team. I firmly believe having these four things can also help you succeed in whatever you choose to do, like it helped me with my running and taking care of my Cystic Fibrosis. These lessons have also been helping me out with my schooling, which is something I am going to talk about in my next guest blog. Are these lessons something that you feel you have a firm grip on, or do you struggle with some of them?

BIO: Katie is 22 years old and has lived in Michigan her whole life. She graduated from Albion College with a double major in computer science and communication, and she is currently working on a Master’s degree from Central Michigan University in communication; with a focus on health communication. In her spare time, Katie enjoys finding new research topics, preparing to teach her COM 101 classes, helping coach the local high school cross country and track teams, running, cooking and convincing various family members that they should get her a Pomsky puppy. (Look them up, they are adorable!) She would love to hear back from people who have read her posts, her email is

Tuesday, May 28, 2013

Top 10 Tuesday: Best Things About Hospital Stays

It's no secret that Ronnie and I have always embraced hospital stays. They look different now that we have Mckenna, but we are still thankful for them and still have a lot we love about them! (List compiled by both of us)

10. Absence makes the heart fonder - While it totally stinks to not have Ronnie around, it does make me appreciate him and how much he does around the house, for me, and for Mckenna. So in that regard, it is a nice reminder of how much I love and appreciate him!!

9. Adventures - Mckenna and I have started using hospital stays to enjoy time together on adventures around town. We have hit up several fun kid spots around town and I think we both dig it.

8. Family time - Since my mom, step-dad and brother live down here in Tucson, I don't get to see them nearly as much as I'd like to. When I'm in the hospital though, I'm only about 15 minutes away from them and see them more than they'd probably like to :)

7. Family time part II - Even though my in-laws (Papi and Nana) are only about 45 minutes away from our house, we don't see them as much as we'd like to (if you can't tell, I'm a big family time kind of a guy). When I'm here in the Hole, Mandi and Mckenna "move in" with Papi and Nana which makes me feel a whole lot better about my time away. I know Mandi loves being around her parents and I'd bet that Mckenna loves it even more.

6. Home cooked meals - I often get home cooked meals courtesy of my wife when I'm at home, but there is always something to be said for my mom's classics. When I'm here in the Hole, someone brings me dinner almost every night and it's usually something made by my mom. Some of the meals brings me back to my childhood, which for me, is a good thing :)

5. FaceTime time - It's not often that Mandi and I have any reason to FaceTime when I'm at home, but we have all of the reasons in the world to FaceTime when I'm not. I absolutely love to chat with Mckenna on FaceTime because she always does something to make me smile. From holding the phone super carefully as to not hang up or giving me 102 kissies during the course of the call, I'm usually smiling ear-to-ear.

4. Rest - I feel selfish saying this, since I know Mandi experiences the opposite, but it is nice to experience unencumbered rest while I'm here in the hospital. I don't feel guilty to just lay in my bed or sit in a chair and not do anything. I tell myself that it's an important part of the tune-up process, and whether that's true or not, I take full advantage of it.

3. A chance to reset - Ronnie had been "off" for a few weeks before going in. I am so thankful he has a place he can go, to get better, and "reset". He always comes back the man I know and love and full of energy!

2. Hospital traditions - While Ronnie and I can't do all our hospital traditions as much now that I don't stay down there with him, we still get the chance to do some (Dunkin Donuts breakfast, listen to radio podcasts, etc) when I go down to visit. It's really nice to sneak in a few of them here and there.

1. Leaving - Even though it's a place we don't hate, nothing feels better then leaving the Hole!!