My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

Some Feathers May Get Ruffled

Ever so often, I'll write a blog on here that will ruffle the feathers of some in the CF community. It's rarely, if ever, intentional, and my intent is never to upset my readers or make them feel bad. It's something that goes along with the territory I guess. I think an ex-preseident of ours said it best: 

“You can please some of the people some of the time, all of the people some of the time, some of the people all of the time, but you can never please all of the people all of the time.” - Abraham Lincoln

Another thing that goes along with the territory is negative responses from some of my readers. These include, but are not limited to - personal attacks, attacks on my family, unfounded accusations and attacks on my faith. 

Fortunately, the positive reactions outnumber the negatives ones about 100 to 1. I always keep that in mind when someone decides to take it upon themselves to try and "hurt me" because I "hurt them". 

I'll tell you what the best medicine is though, it's getting responses like the one below to my blog yesterday:

Mama: Hi Ronnie, I just want you to know we are so grateful for you and how encouraging you are! [Son's name] is doing his treatment that he does not want to be doing and read your post about how you did not do your treatment like you should of and he said, "Man, mom, Ronnie is so encouraging!!!". Thank you sooooooo much ! 

Me: I'm so glad that he can find encouragement from some of my posts. My hearts desire is that others, the next generation, learn from my mistakes and don't make the same choices that I did. If I can change someone's life as a result of my stupidity, I'm glad to do it. Thank you for sharing that with me. Made my day!!! 

Mama: Are you kidding, you just helped me stop nagging, I get tired of hearing myself, too.

That's EXACTLY why I do what I do. I've been very upfront about all of the bad choices I've made. I talked about the different tricks that CF can play that I fell for hook-line-and-sinker. I write because I hope that people like the Mama above and her son are reading. I hope that something I say can help them make better decisions than I did growing up. Simply, I hope that the next generation treats themselves much better than I did.

I'm often reminded by this quote of a fellow cyster in the community that I think put it best:

"I wanna help as many CF'ers as possible. It's therapeutic to think my failure could be someones success." - Michelle Matta

I love it. After hearing that, I just knew that she had to write a guest post on RSBR, which she did, here. I reminded her however that failure only happens when we give up and it's an outcome of deciding not to try. Both failure and success comes in many forms and is different for each person involved. Fortunately, I've rarely seen anyone in the CF community flat out fail!

Lastly, I'd just like to thank all of you who send kind notes, emails and encouraging comments. You keep me going. I'll continue to write as along as there are people out there who will read, and hopefully, leave this blog feeling encouraged, motivated and/or inspired. 

I've come to realize this -  The feathers of my generation may get ruffled while I encourage the next generation to fly higher and straighter at any cost.

Cystic Fibrosis ALWAYS Gets Worse

Cystic Fibrosis always gets worse. It can't get better once you reach ____% lung function. Once you start going into the hospital multiple times a year, you'll probably go multiple times a year for the rest of your (short) life. When you lose lung function, you can't get it back.

Any of that sound familiar? I really hope it doesn't, but I have a feeling that some of you have heard all of those things a time or two. I know I did growing up, and the sad part is, I actually let myself believe some of it. I fell for the part of CF getting worse year after year hook, line and sinker. I was reserved to the fact that I would lose a little bit (or a lot bit) of lung function each year and there wasn't much I could do about it.

I mean, that's what my friends with CF said. That's what I read on the Internet. That's what I heard some CF docs say. It must be true then right?

Wrong. It's wrong for so many different reasons that I don't have the time to list them in this blog, but I'll tell you the biggest reason that it's wrong...

I got caught up in thinking about all of the things that CF could do and lost focus on what I was doing.

That becomes the problem. When we are so concerned with what could happen with our health that we let it distract us from actually doing something about our health now, we have an issue. I totally get it as much of society is stricken with the "it-must-be-somebody-else's-fault" bug.

If we don't feel well, it has to be because of CF. If we're having a bad day, it must be because of CF. If we're mean to our friends, it must be because of CF. If we flunk a test, it must be because of CF. If our lung function declines, it must be because of CF. And on and on and on we go, blaming anyone and in this case, anything else, before we're willing to look in the mirror and realize that we're the problem.

It took me 8 years of declining lung function and 52 days in the hospital to realize that. It took me not being selfish for the first time in my life and actually putting a special girl's needs in front of my own by actually taking care of myself the way that I should. It got cemented when I brought another special girl into this world and made a promise to her that I would always work my booty off.

What's it going to take for you to change?

And I know, I know, there are people out there who will say, "I never miss treatments and I always exercise, but my lung function continues to get worse." Yes, that can be the case (I used to exercise and do my treatments too while seeing my lung function decline - I just wasn't doing as much as I obviously needed to). It however is the case that you're lung function will decline if you don't do your treatments and you don't exercise. . It is also that case that some people wait for far too long before they finally decide to "never miss treatments and always exercise". To be honest, I was almost to that point 4 years ago, but by the grace of God was able to fight back.

So what brought this blog on? I had my 1 month post-hospital clinic visit yesterday and for the first time in 12 years, I had a FVC of 92%. My FEV1 was 75% which is still up from my "baseline" of 50% in 2009 that they said I'd probably stay at. They were wrong.

If you'd like to get healthy, do what you do in spite of CF. No matter how CF decides to act tomorrow, you just make sure to out work it. If your disease is being a little more aggressive, than you must be that much more aggressive. If things are getting better and CF is slowing down a bit, celebrate by kicking it's booty even harder.

I know you can do it, now you just have to believe that you can and will do it!!

Turning Back the Clock

Great question from a reader:

I have a few questions for you, I remember reading on your blog about how you raised your PFTs. I was recently told I can't raise mine and nothing motivates me more than someone saying I can't. I obviously went through the stage every CF patients goes through and stops or halfway does their medicine and treatments and stops working out. So my question is what all did you do to raise yours? What kind of exercise? And did you eat differently?

I was told in 2009 that I should get comfortable with blowing a 50%. As with you, that motivated the heck out of me. It took two years of crazy hard work and dedication, but I was able to blow a 73%. Since then, I've remained steady and haven't had too many drastic dips. I've even been able to inch them up a little more.

For two years, this was my schedule -

Albuterol/Atrovent 4 times daily
Pulmozyme 2 times daily
7% 2 times daily
Inhaled antibiotic 2-3 times daily
Vest 4 times daily for AT LEAST 30 minutes at a time
Ran for 20 to 45 minutes 5 days a week
Took daily walks and bike rides
Lifted weights 3 to 4 times a week

I didn't really eat all that differently.

As you see though, it was a big commitment and obviously one that has paid off for me. When I blew that 73% in 2011, it was my highest number since 2003. So you can't tell me that we can't "turn back the clock"!!

Anyway, hope this helps and please let me know if you have any other questions 

4 Minutes?!?!?

**At-home workout challenge - Hope all of you enjoyed your weekend!! For my cardio workout I did a 3 minute warm-up walk, ran for 25 minutes and then a 3 minute warm-down walk. If you're not at the point where running 25 minutes is an option, no worries, walk it!!

_____________

We've had a running toilet for about 3 months now. I don't quite know how he does it considering it's tough for me to even run 3 minutes! (Anyone?) But anyways, seriously, our toilet has been running on and off for the better part of three months. I'm the furthest thing ever from a handyman, but I have gotten better about at least trying to fix things around the house. I used to be held captive by the fear that I would break something completely or make it worse, until I realized that either way, I would end up calling someone or replacing it if I couldn't tackle it on my own.

So back to the toilet. I tinkered with the handle. I messed with the chain. I changed the height on the bobber thingamajig. I even went as far as to by another rubber ring, take the toilet half apart, change out the ring and put it all back together again (Applause??). But to know avail, the stupid thing continued to run. It wasn't running as much, but it was still going on from time to time. I had gotten so fed up with it that I would use the other toilets in the house and turn the water off to ours completely. Pathetic, I know.

About 1 month ago, we had a plumber out to the house for an unrelated issue. I told him about the problems I was having with my toilet and about all of the "fixes" I had attempted. He said that if I did in fact replace the rubber ring, I should probably get a piece of sand paper and run it across the plastic piece where that rubber makes a seal. Great, I thought, I'll get right on that and try it out.

And again, that was a month ago. I don't know why, but I never got around to taking a piece of sand paper to the toilet. Even though the running water annoyed me SO MUCH, I still didn't take the time to try everything. That is, until yesterday. I finally walked out to the shed, grabbed a piece of sand paper, lifted up tank lid, turned off the water, flushed the toilet, sand papered the seal, moved around some little white tube, put the lid back on and turned on the water. I went through the process, because although it sounds like a lot, it took me all of 4 minutes. 4 minutes!!! I can't believe I put off something for a month that took me 4 minutes to do.

Isn't life like that sometimes? We build up a task, event, conversation, etc in our head so much, that we are guilty of "making a mountain out of a mole hill". Or we say that something is bothering us like crazy, yet we don't take the time to address the situation. I know for me, I used to complain about how I felt, yet I wouldn't take the hour or so a day to do my treatments. It's like I was waiting to feel worse in order to react. Kind of like my toilet. Finally, yesterday, something snapped in me and I decided to walk my lazy butt to the shed and get what I needed to get in order to give fixing the toilet a try. Fortunately, my toilet didn't break to the point of no return, otherwise, we'd have a completely different mess on our hands. I'm glad that my urge to do something about it happened before we were faced with that type of situation.

So I don't know what it is in your life, but DO SOMETHING about it. Stop waiting for the perfect time. Or the right tools. Or a better situation. Or for things to get worse.

Don't be like me and the toilet. Oh, and by the way, the stupid thing isn't running anymore.

All it took was 4 minutes.

I never would have thought...

Sorry as I take a second to adjust my eyes to this new blogger interface. Okay, I'm ready.

Yesterday was a great day!

I guess technically I could start out every blog that way, but let me tell you exactly what I'm talking about. Yesterday as I was getting ready to go for a run, Mandi asked if I like to go run with her and her mom. As usual, when Mandi asked if I would like to go running with her, my answer was no. (I think I mentioned it on this blog before but I'm not a big fan of running with my wife.) It's pretty simple really -  she's really good at running and I'm not. Whenever I run with her I feel like I'm holding her back and the last thing I want to do is cause her to slow down. And although I love spending time with my wife any chance that I can get, running is not one of those times I like to take advantage of.

Mandi was a little more persistent yesterday. She's getting back into the swing of things and still not able to run at the higher end of her pace. Nancy, my mother-in-law, was also insistent that she had fallen a bit out of training and wasn't going to be going that fast either. It took some coaxing from the both of them, but in the end I decided to go with the group. As we all laced up our shoes we are exchanging reasons why none of us were looking forward to this run.

“I wish it were either colder out or warmer out. It's right at that temperature that I know when I start to run it'll be freezing, but as I start to warm up, I'll be ripping off my jacket as I cook to death”

“Trust me. I'm dreading this run is much as you are. My legs feel like they're weighed down with cement right now.”

“I'm still sore from my workout yesterday. I think I'd look forward to this run a little more if it didn't feel like I was getting stabbed in the thighs.”

Those were just a few things being thrown out before we started our run, but as always, we also knew that it wouldn't be something we regretted as soon as our run was over. As we made it out the door we started out at a leisurely walking pace just trying to warm up our legs and adjust to the temperature outside. We were still cracking jokes about how nervous we were with the run getting closer and closer to starting. We made a deal with each other that we would start running as soon as we got to that stop sign. That stop sign came and went and it wasn't until we got to this stop sign that we actually started to run. That's how it usually goes right?!?!?

Anyway, off we went!

For the first 1.8 miles the pace was absolutely perfect for me. Both Mandi and Nancy were going slower than normal and it just so happened to be my top speed at the moment. We were all in a good groove and by the looks of it, all feeling pretty good. It wasn't until about 1.8 mile mark that I started slowing way down and couldn't hang with the girls. However, I set a goal of making it all the way home which was another .4 miles away and that's exactly what I was going to do. Many things ran through my mind to get me to the finish line:

“Your wife had a baby 4 weeks ago and she's pulling away from you. Pick it up!"

"You've made it this far and to stop now would just be stupid."

“Think about how great you'll feel when you run all the way home. Now, think about how bad you feel if you stop now. I guarantee you'll regret stopping now and walking the rest of the way. You always do.”

“If you don't want to do it for you, do it for Mandi and Mckenna."

“Who cares if you're moving slowly, all that matters is that you're moving forward.”

As you can see, I do quite a bit of self coaching when I'm out on the run. You must understand, that this happens every time and not just yesterday. As stated many times before - I'm not the biggest fan of running and that is the absolute truth. It hurts. It's hard to breathe. I don't enjoy it. But, and this is a big but, I am 100% convinced that running is a major player in getting my lung function to a point that it hasn't been since 2003. I know full well that I don't want to run, but I'm convinced that I need to run.

So to make a long story short, although this is already been pretty long, I did in fact make it to the end. I ran 2.2 miles and it is by far the furthest I've run since rehabbing my foot. Like I said, I felt pretty good for 1.8 miles into it, and to me, that is simply amazing! When I started this running journey I could run for 30 seconds before being forced to stop because of either my lungs or legs. To think that I've been out of the running loop for almost 5 months now and I'm already back to running over 2 miles provides me with the joy that I can't quite explain.

I'll tell you happy also -  my lungs. 

You're Capable of More Than You Think

Guest Post by Jaime C.

My name is Jaime, I’m 26 years old, and on Monday, October 24th I ran a mile for the first time in my life. I mean EVER. Then, Tuesday I went and ran two. I know, I’m shocked also!

Those two nights were a triumph for me after five months of working out with a trainer and starting to run. I was a pretty active kid growing up, but after I graduated from high school and started college I just didn’t want to exercise any more--it got in the way of my social schedule and I didn’t want the reminder that my lungs were not cooperating with the plans I had. I was simply being lazy. This decision was quite possibly one of the worst I’ve made in my life.

Five months ago I moved to a new city with friends from college and transfered to a new office with my job. Deciding to move was a long and anxiety-filled process and taking care of myself kind of fell by the way-side. On top of that, the weekend of the actual move I caught a cold, which would. just. not. go. away. Prior to moving I had belonged to a gym but half-heartedly went a couple times a week and walked on the treadmill convinced I couldn’t really handle more than that because it was hard. My parents and new roommates (a couple of close friends from college) encouraged me to keep going to the gym and work with a trainer and really get serious about trying to get my lung function back up. I wasn’t really convinced that it would make much of a difference but decided to give it a try.

About a month into my “new” life I ended up having to do IVs which, as so many of y’all know, just takes it out of you! But one thing I did differently this time--kept working out (with a lot of prodding from my roommates). I took the full three weeks of IVs off of work and during that time got lots of rest, lots of awesome homemade meals (thanks to my church) and lots of time at the gym. After IVs my PFTs were back up to my baseline that I’ve had for the last few years, and fresh off that clean-out I hit the gym hard. The trainer I had been working out with had been doing his CF research and informed me that I was going to become a runner. I laughed in his face. And then he made me go run on the treadmill. And I did it. Very slowly at first and for very short distances, but I did it. It was really hard and I was pretty miserable for a long time. I think that much of the battle was mental for me--believing that what I was doing was, in fact, going to make a difference in my ability to breath, live longer, live better. And believing that I could actually do it.

One thing that my trainer said to me was that he thinks I am capable of more than I think I am. I was totally lame and started crying in the gym. Really cool. But it got me thinking, and I realized that there are a lot of things that I’ve decided I can’t do because of CF. I won’t go into that laundry list but the majority of it is ridiculous because I’ve done things in my life that were hard and out there and impulsive and crazy like moving to a foreign country for 10 months with a weeks notice. So why was taking care of my body and working hard, I mean really hard, to help myself so difficult? Why was I able to do things in other “areas” of my life that required a leap of faith with the absolute possibility of failure but not when it came to putting in the work to help extend my own life? I think it’s because I didn’t want to put in the work, experience the pain, deal with the emotions and the struggles and still get sick or have it make no difference. That feels so defeating and leaves me with a distinct feeling of helplessness that I’ve never experienced elsewhere.

I don’t have a good answer to my own questions or know of the best way to handle the possibility of working really really hard at something and having it go badly or not have miraculous results. But what I do know is that when I went to clinic last Thursday my PFTs were, and I quote my doctor: “the highest they’ve been in 5 years.” WHAT?! All I could do was start laughing. And almost fall off the table. I’m just not graceful. It’s ok, I’ve embraced it. But I digress. The moment after I finished my PFTs I knew they looked good, but having my doc go through my chart and really look at how high and low they’ve been in the last few years confirmed that my hard work was indeed paying off. And all of my miserable moments leading up to being able to run two whole miles were suddenly totally worth it!

Now I know that there will be times when I’ve been working hard and I might not see improvement. We all know the unpredictable nature of CF and that even when doing everything right things can still get worse; and yes that’s frustrating. I can’t in all honesty say that when I experience one of those times in the future, where, despite hard work I still get worse that I’ll have a good attitude about it. However, right now, on this side of that situation, I want to cultivate a lifestyle and disposition that reflect what I’ve learned from these last five months: when it comes to CF I am absolutely capable of more than I ever thought; that working hard through pain and burning lungs and muscles is worth it to take back my life and not feeling like CF has already claimed victory. I CAN and I WILL fight this.

Bio: I'm Jaime C. and I'm 26 years old from NC. I was diagnosed at 3 months old at Duke but have been seen at UNC by an amazing group of doctors since I was four. I work full time at a bank and have been doing that for the last two and a half years. Prior to that, I was a nanny in Italy, and before that a college student! I love my family, nail polish, exploring my city, finding new fun places to eat, cooking, the beach, baseball, fashion, traveling the world, learning about and knowing God more, and having a good beer with friends. I hope this little slice of my life helps others realize that they are stronger and capable of more than they think especially in regards to exercise.

Note from Ronnie: I can't thank Jaime enough for sharing her story. It rings so true to many of us in the CF community doesn't it? I know that when I started running, all I could do was picture failing. That fact the I decided to run was a victory in itself, but when I actually "hit the ground running" it became a battle of believing in myself. I think Jaime shows us that through some hard work, preserving and belief in oneself, anything is possible!! Thank you SO MUCH cyster!!

Workout Wednesday: Just Do It!!

I often get asked for advice about starting a workout plan or tips on how to accomplish one's goals when it comes to getting healthier. My advice is not novel nor is it mind blowing, in fact, I didn't even originally come up with it: Just do it. Sure, you probably need to know what you'll be doing, but I think a lot of us get caught up in analysis paralysis when it comes to working out. We worry so much about the nuances and the sets and the time and the reps and the heart rate etc. that we end up doing nothing. All that is important is that you set a goal and you take steps forward each and every day to achieve that goal. If your goal is to get healthier and you've decided the only way to get healthier is to add exercise to your routine in addition to your treatment schedule, stop thinking about it and just do it! And I'm not talking to you as someone who doesn't struggle with this myself.

When it comes to me and working out I would say that one of my biggest obstacles is analysis paralysis. I often find myself coming up with a variety of reasons of why working out today just won't work out. My stomach hurts. I'm hungry and I have to choose between eating and working out. I have a headache. I'm having trouble breathing today. Do I really have time? Is there something else that I should be doing instead? Does it really matter if I just miss one day? I've already missed one day what's the big deal if I miss two?

What I really want you guys understand is that this is a conversation that goes on in my head almost daily. See, I'm not one of those guys that has a burning desire to go to the gym and more so, I try to find every reason not to do cardio. Let's be clear, I hate running and I'm not particularly fond of getting out of breath. There is something I am good at however, and that is sticking to my word. I try very hard to say what I'm going to do and then do what I said I would do. I was convinced a couple of years ago that the only way I was going to get back to who I wanted to be, was to recommit to treatments and exercise. I made a promise to myself that I will wake up each and every day going forward and try to be the best version of myself. To be the best version of myself I need to be the healthiest I can be. No one can dispute that - without our health, the rest of our life suffers. I know full well that when I am healthier I am more active and when I'm more active, I am happier. And not only did I make a promise to myself but I made a promise to Mandi - that if she was going to be my wife I would do anything and everything to make sure I was in this for the long haul. I made that promise and I intend to keep it.

Now, is it easy? Nope. Not at all. The biggest challenge I face each and every day is actually willing myself to get my butt to the gym. Each and every day I go through a variety of questions and throw out a variety of roadblocks to try to cause myself to stumble. My mind knows that my body would rather sit on the couch and hang out with my wife. So my mind is a really good at convincing my actions that my body knows best. In fact, just today, the last thing in the world I wanted to do was go to the gym. But, as I said, I'm a man of my word and this morning I woke up and promised myself that I would do spin class. That's one thing I've discovered that really helps when it comes to sticking with a workout plan - don't worry about working out for all of next week, just worry about working out today!

Here's what you'll find: once you actually get to the gym you enjoy each and every second of it. You may even enjoy being out of breath! Like I said, the last thing on my mind today was actually getting myself to the gym and doing spin class, but just like each and every time before this, I left the gym with a smile on my face. I even told myself that I was going to “take it easy” at spin class today, but once I got started I really pushed myself. And I'm not kidding, that happens every single time I drag my butt to the gym. It's all about giving yourself an opportunity to succeed. Like MJ said, "We miss 100 percent of the shots we don't take". Stop holding onto the ball afraid you're going to miss the shot. Who cares?!?! Shoot the ball! Chances are, it will go in.

Thinking about working out today? Just do it!

Weight Loss Challenge...with Me and Only Me.

About 10 days ago I posted about my attempt to cut some lbs over the course of the next 6 months. If you missed the post and want to catch up, you can find it here. I figured I would update you guys on how I did on achieving my weekly goals plus let you know what my new goals are for this week. Here were my original goals:

Using smaller plates for my meals

Not returning for seconds

Eating more servings of vegetables and fruit

Taking more time to eat my meals

So far, I'm happy to report that I have not broken any of these "rules" with the exception being yesterday as all of our small plates were dirty. I however used the inner ring of the big plate as my guide, so I'm pretty sure that things worked out ok. It's pretty amazing how fast I felt these small changes. I mean, I'm definitely feeling hungry more often now, but as I told my coach, I'd rather feel hungry than feel overstuffed and bloated. The great part is that there are no calorie limits so when I am hungry I can eat. I've never been much of a snacker, just more of an over-eater during meals. Well now I find myself snacking throughout the day on stuff like carrots, grapes and peanuts.

After knocking my first set of goals out of the park, we decided to up the ante a bit and set some tougher goals for me to try and meet. My new goals are as follows:

I will continue with small plates and no second servings

I will eat three servings of vegetables at least 3 days per week.

I will continue to slow down my eating by chewing more and more slowly, and setting food/utensil down between bites.

I will lift 3 days/week and spin 3 days/week. I will also do a separate workout on one of the weekend days.

I will watch the videos (that were sent to me) and begin playing around with the 12 Kg kettlebell.

I will ride my bike while Mandi runs at least 3 mornings/week.

Seems simple enough. I will say though, these have already proven to be much more difficult. The ones that I struggle with the most are eating three servings a vegetables a day and eating more slowly. If it were three servings of fruit a day, I'd knock it out of the park. I'm constantly snacking on grapes, watermelon, pineapple and cherries. I think the main issue for me is I'm not a big raw vegetable fan. The only two that really come to mind are celery (with peanut butter) and carrots (with hummus). Maybe I'm just overlooking some that I would actually like? That's my hope at least. And of course, since I now am always very hungry for my meals, slowing down and setting my utensil down between each bite is quite a challenge.

So I now turn it over to you guys...Any recommendations on ways to get in my three servings of vegetables? Also, how about any tips to make myself slow down as I eat?

Oh yeah, as I reported, I started this journey at 205 and was down to 197 a week later. A week after that I was down to 193. Something's working!!

Gopher's and Cystic Fibrosis: Part II

Continued from Tuesday's blog...

On Tuesday I talked about the problems that are going on in my garden. To recap, in case you didn't have a chance to read Tuesday's blog (which can be found here), I had a gopher that was slowly making his way through my planters and garden eating everything in his path. It started out simply not knowing what the problem was, but as soon as I figured out that it was indeed a gopher I hesitated to react. At first I hesitated because I simply didn't know what to do, but after some research and figuring out exactly what to do, I still did nothing. This went on for a handful of days as I basically waited for the gopher to make his way to the largest part of my garden - the part full of strawberries, zucchini, cucumber, tomatoes, onions and a variety of herbs. I knew the time was coming when I would go out and find my garden completely destroyed, yet I did nothing.

Towards the end of Tuesday's blog I hinted at the fact that I thought the story had a lot of parallels with the CF life. Specifically, I think the story has a lot of parallels with some seasons in my CF life. I asked you all if you saw any similarities or parallels between the story of the Gopher in the garden and the CF life and a few of you gave some very good answers. In fact, there were some answers that I hadn't even thought about. I found it especially interesting to see which answers came from CFers in the community, and which answers came from parents in the community. It makes perfect sense why they would be different. It's certainly not too late for you to read Tuesday's blog and tell me what you think.

The purpose of today's blog, however, is to tell you what I think and how I think it relates to my CF life.

Let's get one thing out of the way, I've been far from perfect in navigating this life my entire life. There have been seasons that I have done really well for a really long time and there have been seasons that I've done very poorly for a really long time. There have also been blips along the way where I stumbled for a couple of weeks or conversely I was "on fire" for a couple of weeks. It is important to realize that although we all have a different story, many of us travel the same path for at least a little bit of the time. And just like the different answers and responses I got to Tuesday's blog, I may interpret the story an entirely different way as it relates to my life.

There have been times in my life when I knew exactly what I needed to do to give myself the best shot at being healthy, yet I did nothing. My parents, doctors and friends would tell me exactly what I needed to be doing (ie treatments, exercise, tuneups). However, even though I believed them, I acted as if I did not. I'm convinced looking back at all of the times I said, “treatments don't help me” or “exercising isn't worth it” that I was using it as a defense

mechanism. The bottom line was I simply just didn't want to do those things. I had the ability, the time, and the resources to take care of myself. I just simply chose not to. The crazy part is that I knew I was getting sicker, that I was feeling different (and not in a good way), and yet it's like I was waiting for it to get “bad enough” for me to do anything about it. I knew that they were all right and what they were saying was exactly what I should be doing, but at the time I just felt like they didn't “get it”.

The problem with how I handled those instances is that every time I allowed my health to get “bad enough”, I suffered for it. Take, for example, the summer between eight grade and my freshman year of high school. I spent all of my time with my friends having sleepovers, hitting on girls and preparing to be a big, bad, high school student. I certainly felt invincible, and was too "busy" to do my treatments. My doctors knew how important the upcoming football season was to me and stressed that I should buckle down on my treatments and take care of myself in order to be successful in the upcoming season. But I ignored them. In the back of my mind, I knew they were right, but I was having too much fun "living life" (as I said) to be bothered with doing everything they said I should do. Well, the end of summer came, and instead of heading out onto the football field, I had to go to the hospital for 10 days and missed the first football game - a game I had worked for, and looked forward to, my whole life.

Point is, even though I knew that not putting my health first would ultimately cost me, I still made the wrong decision. But all it took to snap me back into reality was missing that first football game. I remember getting phone calls from my teammates to my hospital room after the game and feeling a deep sense of regret. What if I would have put my health first that entire summer and not my friends or what I thought of as "life"? What if I would have given up just one hour a day to completely devote to my health? Would things have turned out differently? Of course I'll never know the answer, but I can say with confidence that putting my health first would have given me the best shot at playing in that game.

This scenario also wasn't just isolated to 1993. As I got comfortable and the harsh lesson wore off, I would slip back into non-compliance - sometimes for a long period of time and sometimes for a short period of time. But in those times I slacked off, just like that gopher, CF wasn't taking any days off. Just like that gopher, CF was going to continue on its mission. And it wasn't until there were consequences and lessons that I would intervene.

There are always consequences to my health and my life if I chose not to do anything to fight my CF, just like there are consequences in my garden if I don't do anything to fight off that gopher. So now I challenge myself each day to fight that dang "gopher," show it who's boss, and I will win. The fruit in my life is much sweeter and much richer than anything I can grow in my garden.

Gophers and The CF Life: The Similarities Are Astounding

For the past couple of weeks I've been playing a cat and mouse game with a critter that is getting oh so close to my garden. Before I get too deep, let's start from the beginning, let's go back in time about 2 weeks...

So I walked outside (to the side of my house) to some above ground planters, that Mandi and I planted cucumber and zucchini in, in order to do some pruning. I noticed that some dirt had been kicked up and the cucumber plant just looked a bit "off". At this point I thought that it was possibly the wind that had kicked the dirt up and shifted the plant enough so that it looked different. I went about my business and pruned both plants.

The next day as I was walking to my trash can, by way of the planters, I noticed that the cucumber plant was now a bit smaller (and not a result of my pruning). As I investigated further, I came to the conclusion that some bugs must have gotten into the plant and started nibbling away. I then brought out the bug spray and gave it a good dousing.

Then two days later when I was putting some recycling in the bin, I noticed that the entire cucumber plant was now gone! My first thought was that my neighbor was playing some sort of joke on me to be honest with you. Due to my very green thumb, I couldn't come up with many more answers other than bugs or pranks. That's when I noticed a mound of dirt about 5 feet away from the planter. Now, I'm no expert, but at this point I figured that there must be some critter making holes in my yard and then proceeding to eat it's way through my vegetables. I then noticed a very tiny hole in the dirt of the cucumber planter that after digging it up found it to be a much bigger hole. I didn't however see any critter.

The next day I noticed a new mound of dirt in-between the cucumber planter and the zucchini planter. Ok, I thought, this needs to be handled. I didn't want to lose my zucchini plant like I did my cucumber plant. Knowing that things were progressing with this little rat, or whatever it was, I new that I needed to kick my butt into gear. But it didn't. Could have done something that night, but I didn't. You can probably guess what I walked out to the next day.

Yup, the zucchini plant didn't look as vibrant as it did the day before. The dirt had been dug up and the leaves were already starting to wilt. I reached down, grabbed the plant and up it came. Not a root in sight. The little bugger actually ate all of the roots to the plant but had not yet made his way to the leaves or zucchini. I put the plant back down to grab Mandi and showed

her what had happened. After she checked out the damage and headed back in, I stood by the planter to decide what step to take next. It was then that I looked down at the hole this dude had dug and noticed his stupid nose pushing dirt literally 6 inches from my foot. Looking back, I wish I would have grabbed a shovel and done my best to "find" him with the end of it. I may have been able to take care of the problem right then, but I didn't. Instead, I picked up the zucchini plant and hastily tossed it into the trash can.

Then for the next week, I talked about how this critter, gopher to be exact, was making his way through my garden. I rehashed the story at least a dozen times and each time ended it with what I needed to do. See, by this time, he had moved on to another planter which is only about 10 feet from my main garden. I knew that I had to act in order to save the "prize" of my backyard. But, I didn't. Instead, I just talked about options. I told people who would listen that I really didn't know what to do. I mean, I knew something had to be done, but just what had to be done I did not know. I sat idle and complained even though I new the future. I knew, based on this gopher getting closer and closer to my full garden, and the destruction that had been left behind, exactly what was going to happen. It wasn't a matter of if my garden would be destroyed, but when. Yet, I did nothing. At this point, even though I didn't know what exactly needed to be done, I should have done something, yet, I did nothing. In fact, I didn't attempt to do anything. It felt like I was waiting for my garden to be destroyed, to then figure out what to do. Almost as if the garden being destroyed would somehow make this threat more "real". By that point of course it would be to late.

I could've acted a few days prior, but I didn't. I could've acted when I noticed a big mound of dirt and my cucumber plant destroyed, but I didn't. I could have acted when I was holding a dead zucchini plant in the air, but I didn't. I could've acted as the gopher made it's way towards my garden and proceeded to do what was almost a certainty at this point, yet, I did nothing. So what was it going to take to make me actually do something to solve this problem? Not sure, but apparently it hasn't happened yet. I just hope by the time I decide to act that it won't be too late.

So what exactly does this have to do with CF/Treatments/Life? Well, what do you think?

To be continued on Wednesday....

My "Increase Lung Function" Routine

Message from a reader and my response...

Hey Ronnie, Congratulations that must feel awesome! Do you have any tips? Do you practice doing pfts on a regular basis? I recently had my quarterly appt and I had been running about 25 miles per week for the 3 weeks leading up to my appt and I went down in my FEV1 from 51 to 47%. I was so bummed and ended up crying in my appt (which I've never done.) I know that running is great and it gets me to cough up soooo much junk and I do lift weights regularly too but is there anything else you do? I mean that is amazing to jump up like that....12 %?! I have never had an increase like that. my pfts have just been hovering around 50% for the past 6 years. Any tips would be greatly appreciated:)

Great job on running so much these past three weeks!!! One thing to keep in mind is that you've been hovering around the same numbers for 6 years, so you can't expect to see a big jump in only 3 weeks. I had a steady decline for 8 years until I finally said "enough is enough". I was prepared to put in at least 8 years of hard work. Know what I mean? It takes us quite a few years to get to where we are, so it may take quite a few years to get to where we want to be! The key is to just stay after it! Don't be discouraged by one PFT result. PFT tests are very finicky and for all you know your numbers could be better today. Use those results as wind to blow your sail and move the boat forward, don't turn your sail and try to go against the wind. As far as what I do...Before I get out of bed, I lay there for about 5 minutes and take deep deep breaths, as deep as I can, and exhale. I try to get all of that mucus out that made it's way up my lungs while I was sleeping. I do 3 to 4 treatments a day (albuterol/atrovent, Pulmozyme, HTS, Inhaled antibiotic, Advair, Vest) and I make sure to do SOMETHING each and every day. Whether it's the gym, walk/run, bike, skip, whatever. Stick with it and remember, even if your numbers don't go up, imagine them being the same in 5 years...that would be quite a positive thing!!!

**Now, before you comment that you do everything listed above and then some and your numbers won't budge, just keep in mind that I was asked what I do. We all understand that there are some among us that can do everything right yet they still suffer...just as there are some among us who don't need to touch a treatment or exercise in any way and do just fine. The CF population is like a big bell curve with many of us being able to affect how we feel on a day to day basis and then others on the fringe in the categories I mentioned above. For many of us, if we stay committed to treatments and exercise it will have nothing but a positive effect on our health. And please, before you comment that everyone you know gives it their best, just think about that statement a little bit. Our best? How would you define it? For me, a guy who devotes 3-4 hours per day on treatments and exercise, I know that I can still do better. I would contend that we can all do better. If you've mastered the ability of "giving it your best", I beg you, fill me in on the secret. I don't think it's a bad thing at all to wake up every day and try to be the best version of ourselves. Unfortunately, I still fail just about every day :) Maybe I need to lower my standards?

Walter's Story: Exercise & Cystic Fibrosis

Why am I 45 years old with Cystic Fibrosis? I was told I’d be lucky to see out my teens. Exercise has always played a big role in my life, and most likely is the reason why I am still in the land of the living.

My parents weren’t great sports fanatics, and I wasn’t much good at any sport. In fact I was always last to be chosen for any school team. I was the smallest in my class for most of my teens. I did love riding my bicycle to high school in Holland, 10kms each way! My parents could not get me to go in the bus, as I would always prefer to ride at high speed (with my neighbour) on the Dutch bicycle paths.

Once we immigrated to Australia, when I was 13, my family adopted an Irish Setter. I ran with it every day. In my late teens I also had a job as a milk-runner; delivering milk to peoples doorsteps from the back of a truck. I ran with ‘little athletics’, walked in the mountains with the FBI (Family Bushwalkers Incorporated), I did lots of outdoors activities with school such as hiking and caving.

Never was I very competitive, not ever did I need or want to come first in anything. My aim was to be outdoors and having fun. I don’t have a competitive bone in my body in fact. This also meant I didn’t have too many sport injuries in life. Even when I ran in marathons, half marathons and tri and duathlons I would only ever go in them for fun and just to finish them. I would cough so much during those events that people would regularly ask me if I was OK. My standard answer was; ‘Yes mate, I’ve coughed this distance before’. Swimming was the hardest for me. Maybe because in public pools it was not acceptable to cough and spit, so my training was limited there.

For me the exciting thing about exercise was variety. The more the better. I am easily bored, so I always tried new things. Loved roller blading, which I did with my mates on Sunday afternoons on an abandoned school play-ground. During the week, one of us bladers would sometimes find an adrenaline filled and mostly downhill course of 10-20 kms. When I was in my late twenties I beat the scuba diving medical test (by telling them I was a heavy smoker!) and started diving. After about 200 dives over maybe 5 years I realised how stupid I had been, or how lucky not to have had a pneumothorax! I was able to comfortably have huge coughing fits 20 meters under water, and even got my Advanced Open Water Padi certification. I still enjoy snorkelling, but when snorkelling I need a flotation device for when I cough, unlike when diving with a regulator in your mouth and a BCD (Buoyancy Control Device) keeping you steady.

Fun runs and community sporting events are always the most fun. Usually they have good prizes, and I often score an encouragement reward (and CF awareness!), or for having travelled the furthest to be there. And yes, sometimes I even end up first in my division (when I happen to be the only one in it!), like with Orienteering recently!

Last weekend I cycled in a big charity bicycle ride and I thought it was more of a social ride. Low and behold it was full of fancy gear road riders and I rode the entire distance on my own. I was the only one who brought lunch and snacks, and had a great ride on my own up the back.

Skiing is another great sport I loved doing. Although a little expensive now, I discovered that by doing cross country or trying out snow boards you don’t need the expensive full lift passes. I also discovered that if you rent a snow board they happily change it for cross country skis after lunch. When I was under 18 there were loads of affordable skiing offers for minors, complete with bus and lift tickets. I had rock-hoppers (old skis) that were so rough that I had no qualms about skiing down rocky patches, and got a ‘Wally of the Year’ award for skiing Thredbo from top to bottom when there was only half cover – with sparks. I had a lot of fun!

All through my life I have stayed relatively healthy mostly through sports and adventures, but of course my lungs have declined and are dipping towards the 40% of predicted FEV1. I still ride my bicycle everyday to and from my 2 hours a day desk-job, and try and do a daily ‘proper’ exercise (walk in the hills for an hour or so). I regularly take the kayak out for a paddle or go into the mountains, jog around the beach or play with the Wii inside. When I am lucky someone invites me to go sailing or mountain climbing, but mostly I do more accessible sports.

For work I have a casual office job where I do IT and Admin support for 2 hours a day in town, close enough to commute on the bicycle. I also do some freelance computer work which I can do from my laptop and I waste an awful lot of time doing just ‘stuff’ on the computer, mostly voluntary web work, blogs, and trying to write a second book. There is never enough time in my day as you can imagine, I also do a lot of volunteering where I can. A member of the local Lions group, and a Friend of the Lillico Penguins (a nearby colony of little penguins), help with bird counts and wherever people can use my help,...

And CF? Yes, that is a job on its own. Doing a thorough saline neb in the morning with huffs, puffs and flutter takes me a good hour, again at night with Pulmozyne too. My girlfriend ensures I never go hungry, feeding me day and night, and making sure I don’t forget anything (a huge job!), from Calcium tablets to insulin, reminding me to take my enzymes, my keys and my lunch. She comes with me on many of my exercises, including running with the Hash House Harriers (probably my most favourite exercise as it includes a beer or three), coming to Hobart to the CF Clinic, collecting for CF on 65 Roses day,... I think CF is team work, and we keep each other motivated. A while ago I took a cruise with my 77 year old mother (for her birthday), but even there I woke up at 6am every day to get to the ship’s gym for the onboard boot-camp classes, and on the island stops still managed to abseil down a waterfall... Never stop exercising!

I like to keep adventures on the horizon, like in the past when I rode across Europe (www.coughingthedistance.com), or last year when I climbed Mount Kinabalu (www.coughing4cf.com) and next year I am hoping to do the El Camino trail, a 6-week walk across Spain.

Next time I might write about all the alternative medicine and therapies I have tried with varying results.

BIO: Name is Walter van Praag. Born in Holland 8 July 1965, diagnosed with CF at age 10, migrated to Australia at age 13. Educated in Canberra, complete with BA in Philosophy and BSc in Mathematics (not because I was smart, just because university life was perfectly suited to CF!). Ended up working with computers for a living after having gone through numerous government jobs and even set up and operated a small transport business! Worked in HK for a year, 3 years in PNG, 3 years in USA, travelled the world on a budget at every opportunity. Greatest claim to fame was receiving an Order of Australia Medal for 'service to community health through raising the awareness of cystic

fibrosis'. My personal biggest achievement was writing my first book; 'Coughing the Distance - cycling from Paris to Istanbul with CF'.

Note from Ronnie: Thank you SO MUCH Walter for letting us peak into your daily life of exercise and Cystic Fibrosis. You've provided us with great examples of different types of exercise we can be doing and ways that we can "keep it fresh". It's obvious that exercise has played a big role in your life and there is no doubt it is a huge reason that you are still kicking major booty today! Keep up the good work and thank you for all of your time and effort put forth into CF awareness.

Want to live a "normal" life? Inquire within.

Guest Post by Ayn Learn

My name is Ayn Learn. I’m twenty-two years old, and was diagnosed at birth with DeltaF508.

Ronnie has asked me to share my story about my college experience with CF. So here goes...

First, a little background. I was a sick baby. I was cut out early and kept in the hospital for five weeks because of CF complications. A meconium ileus, massive mucus and water in the lungs, and a collapsed lung. The doctor’s told my parents that it was a miracle I was alive and that I wouldn’t make it to adolescence.

When I was four, my father started me running. My father is a distance runner and naturally he passed his passion on to his kids. Every morning my dad and I would go on a run, rain or shine. I clocked in serious mileage as a child and adolescent, and by age eight I was averaging 40 -50 miles a week, which is an average of about 6 miles a day. My lungs grew strong. I had amazing lungs growing up, and because of that, I never really thought about CF. The CF doctors would tell me that I had the best lungs of a CF child they had ever seen.

I grew up thinking that my CF was only a mild case. Even though my parents told me that the running was the key to my health, because I had never experienced anything too severe, I didn’t believe them. I didn’t realize that it was running an hour to two every day that was saving my lungs, and my life.

When I was eleven CF began to fight back harder, but I kept running and was able to battle it. I did my nebs everyday and I ran every single day. Combined with yearly piccs, I was able to stay ahead of the game and CF was only an “occasional” disruption to my normal life.

I ran cross country and track and field throughout high school. I had my share of piccs and hospital stays, battling pseudomonas strains all the time, but I never really felt unhealthy. When I graduated, my lung function was in between 77- 86%.

I went off to college and joined my schools cross country team. This was a time for freedom.

I was living in a coed dorm with my best friend, away from home for the first time. I didn’t think I needed to make CF a priority. It was embarrassing, too, doing nebs in front of my roommate and our friends in the dorm. I didn’t want to be labeled as ‘the sick girl.’ So I lost interest in taking care of myself. I was really relaxed with my treatments and did them maybe every other day at best. I did not make my health a priority at all.

Halfway through my first quarter I started feeling bad, and I began to experience extreme difficulty in running. Every step I took it felt like I was drowning. Running became hard and unpleasant.

A few weeks after that, I coughed up blood for the first time. This was terrifying. I had been coughing into tissues all night in the dorm room, and when I woke up I saw that those tissues were filled with nothing but bright red blood. I rushed to bathroom and coughed up mouthfuls of blood, probably at least half a cup total. I had never been so freaked out. I made an appointment with the CF clinic and proceeded to do the stupidest thing I could have done in this situation.

I quit running.

I can honestly say that that was the biggest mistake of my life.

The Biggest. Mistake. OF MY LIFE.

The CF appointment shortly after revealed pseudomonas and a decline in lung function to about the low 60s. I did a picc line while living in the dorms and my roommate and friends watched me ‘shoot up.’ For someone who didn’t want to appear different or sick, I wasn’t too happy.

Sadly, though, this wasn’t the wake up call that I needed.

Once I finished 3 weeks of treatment, I went back to my old habits of inconsistency. I wasn’t running now, and I wasn’t doing the vest (I didn’t have one at the time, never having need for it before because of all the running). I wasn’t doing my treatments consistently. I pretty much became a couch potato, my only exercise being the walk to my classes.

I still believed that my CF was “mild” and that I wasn’t like all the others who would get sick and die if they didn’t take care of themselves. I wanted so badly just to be normal. But I wasn’t. I continued to need more picc lines and soon I couldn’t even make it three months without coughing up blood and needing another picc.

I watched my lung function decline each month. In a year and a half, I watched my lung function drop from about 70% to 47% ... Simply because I stopped running and I wasn’t consistent with my treatments.

My CF clinic stopped treating adults and sent me away to a new clinic two hours away. After this, I felt abandoned. I felt like everyone was giving up on me and now, when I would try to do my nebulizers every day, it seemed to be too late. Nothing was working and my lung function continued to decline. I was sitting in the hospital with yet another picc, when I realized that things needed to change or I was going to die. I finally heard what my parents had been yelling to me over and over, what I had been too stubborn to hear:

That it is running that keeps you healthy. That it’s doing your treatments every day that keeps you alive.

It was both a horrible and wonderful moment. In that moment I realized that all of this was my fault. Sure, having CF wasn’t my fault. But not taking care of myself, slacking off on treatments, and refusing to exercise – that was all on me. But it was also wonderful, because for so long I had felt helpless; I had felt that CF was winning and that there was nothing I could do to stop it. Suddenly, I had the upper hand in this battle, and I knew the secret to winning this CF war. Nebulizers and medicine are only as affective as what they can reach. If your lungs are plugged up with mucus, the medicine isn’t go to be as helpful. If your lungs are too plugged up with mucus, medicine will only help so much. You have to get the junk out of your lungs. Airway clearance, in my case running, is the most important weapon we have against CF.

My first day off the picc I went for a run. It was more like an awkward shuffle and mostly walking after that, but I did it.

It’s taken me a long time to get back into running, and I do mean a long time. It’s taken me probably a full year and a half to get back into a schedule of every day running, because knowing what to do and putting that into practice are very different things. Regardless of my years of running as a kid, running was hard now. I couldn’t jog half a mile when I started back. Running too long would make me cough and throw up and it would make me so frustrated knowing that I had been a decent runner before and now I could barely run one mile. But I kept at it.

It’s taken a long time, but I now run every morning. And every morning, I do my treatments and my vest as well.

When I rejoined my cross country team last year, and was running long distances again, my lung function shot up to 67%. From high 40’s to high 60’s. The proof is in the numbers.

So college was a hard transition. Suddenly, when you get to college, you don’t have your parents there telling you to do your treatments and make you go run or do your airway clearance. You’re on your own and you want freedom and you don’t understand that by ignoring your responsibilities to CF, you’re slowly killing yourself. The way I see it now, is that I want the best possible way of life for myself. I hate feeling sick and I hate my lungs hurting all the time. Airway clearance and nebulizers and the vest, these things were all created so that we could better our way of living – so that we can live longer and fuller lives. And if we have these amazing weapons to fight CF, running included, why on earth wouldn’t we want to use them?

It’s hard to fit in that schedule with school and work, and life often gets way too busy. But I’ve realized that you can’t ignore CF. CF was there affecting my lungs every day, whether I acknowledged it or not. But by acknowledging it, you can fight it. And yes, it is embarrassing going out in public and running while you’re coughing up mucus everywhere and puking on the sidewalk in front of your neighbors. But you’re fighting a battle and you should take pride in the fact that you’re doing everything in your power to beat CF.

Currently I do not run as many miles as I did when I was on the team, and my lung function is down again to about 58%. However, I have now graduated college and have refocused my life to getting longer and longer runs in. My goal is to get up to 10 miles before this year is over, and I know I will succeed. I’m no longer afraid of quitting running, because I recognize that running is more than a health benefit, it’s a way of life. It’s something to take pride in every day. And you feel so much better after you run.

Of course there will always be ups and down, and hospital stays and picc lines and surgeries. But what I’ve realized is that you can’t let those things stop you. You have a picc? So what. You still go for a run, just like you still do your vest and do your nebs. Airway clearance should never stop because you’re sick!

So for those who are entering college, remember to make your health a priority, always. Because once you stop taking care of yourself and lose a good deal of lung function, it’s hell getting it back. It’s much easier to keep up with your treatments every day and exercise every day, instead of spending months in the hospital.

My leaving message to everyone here is to find your exercise of choice, and learn to love it. Airway clearance through exercise is the easiest, most enjoyable, and most effective way of getting mucus out of your lungs. So take your health into your own hands. Make exercise a part of your identity, and CF doesn’t stand a chance. Whether it be running, biking, swimming, hip hop dancing, whatever you want, just do it, every day, and the world is yours.

Ayn's Bio: My name is Ayn Learn. I was born on July 5^th, 1988 in Giessen, Germany. I was premature because of Cystic Fibrosis, and was diagnosed immediately because of CF complications. I moved to America when I was two and grew up in California, where I still live today. I have one older brother, Nathan, and I’m so lucky to have him as well as my parents who are so supportive. I love my family and our three kitties so much. I know I wouldn’t be the person I am today without them. I started running when I was four and ran throughout my childhood. I’ve had twelve sinus surgeries, one intestinal surgery, one deviated septum surgery, and a lot of PICCs and hospital visits, but fortunately CF hasn’t affected my education. I graduated from high school in 2006 and graduated from college this very month, March 2011 in English Education. I’m currently coaching two middle school running teams and I absolutely love it! I now plan to become a middle school teacher and will pursue my Master’s degree in the future. CF has definitely shaped my life, but it does not define me. I have many passions and I try to live my life without letting CF control what I do. I love to sing and to write songs on the guitar, I love to write and to read, I love photography and running, and I love the fact that medical advancements are getting better and better so that we may pursue and enjoy our passions in life!

Note from Ronnie: Thank you SO MUCH Ayn for taking the time to write this inspiring and powerful blog. You make it so clear just how important exercise can be when woven into our daily routine. Like you said, if our desire is to live a normal life, then we must be willing to do what it takes to take care of ourselves. Even though it wasn't always easy, you've showed just how powerful treatments and exercise can be, even if we fall off the wagon for a bit. Sometimes, sharing the bad decisions we've made can be just what others need to hear to kick it into gear! Thank you.