Outrun CF - May 12th

Welp, it's that time of year again...on May 12, 2012 it's time to Outrun CF. As you've maybe seen us post in the past, CysticLife teams up with The Rock CF Foundation a couple times a year to "outrun CF" through a virtual race.

Here's how it works, anyone, anywhere can register for the virtual race. You can run or walk (shoot, you can even crawl or skip or hop if you want) any distance, near where you live (or wherever you'll be on race day).

All registrants receive a t-shirt that is specific to this particular race (each run we have we have a unique shirt designed for). This go around we had a t-shirt design contest, so the shirt is an awesome shirt someone in the community designed (see picture).

Then on May 12th, everyone outruns (or outwalks) CF on the same day, in their shirts. We encourage people to take pictures and post them on our Facebook page!

So the question is, have you registered yet? Don't miss your chance to join us in outrunning CF. Plus, we always have people bummed that they didn't get a shirt when they had the chance...so be sure to register so you don't miss your chance to get an awesome tshirt - they're only available by registering!

REGISTER HERE: http://www.active.com/running/you-name-it-az/out-run-cf-virtual-run-spring-2012

Disappointed in...

I had a clinic appointment yesterday as a 6 week follow-up from being in the Hole. I didn't go into it thinking my PFTs were going to be awesome, but I didn't think they would be bad either. I was right. And sometimes, I hate being right.

There were a couple reasons I thought this:

Mckenna came down with Influenza A a couple of weeks ago, and although I avoided the full on flu, I definitely developed a cough that still hasn't gone away.

I was particularly tight yesterday. I'm not sure if it was because of dust in the air or some other environmental factor, but it definitely wasn't "just CF". My cough is generally fairly dry, but yesterday it was tight and dry. Glenda could hear it in my cough and was not at all surprised by my numbers.

Those are pretty good reasons for my lower lung functions, but, and this is a big butt, I mean but, those were in no way the biggest contributing factor to my lower lung function.What those are are excuses. They just happen to feel a little better cause it happened to be out of my control. They'd be reasons if I didn't know this...


The biggest reason my lung functions were down was because, get this, because of me. 

I've been doing a really good job at getting all of my treatments and then some in each and every day. I have however only been doing an average at best job getting in all of my workouts. Now, I'm active everyday without fail because of the many walk we take with Mckenna, but that's just simply not enough for me. If I expect good lung function, I have to do more.

I can't settle for only running 2-3 times this week like I have the previous month. I can't go to the gym only 2-3 times a week and expect my FEV1 to increase. Some people out there may do great with that amount of work, but for me, it's not enough.

How do I know? Because I've put in way more work in the past and have had way better results. It's not the lung functions that I'm so much disappointed in, which by the way were 67% down from 74%, I'm disappointed in my focus and effort. 

I know I can do more. I know my priorities have been shifted over the last month or so. I know that I was more worried about running being hard than I was about the results. I was focused more on how tired I was rather than how much more energy I feel when I'm consistent with my runs. I thought about how cruddy my lungs felt before the run and not how great they feel after. I was focused on all of the wrong stuff.

When it comes down to it, it's not about me. It's not about how I feel. It's not about what I think. 

It's about them. It's about the two people on this planet that keep me going. It's about the commitment I made to my wife. It's about the commitment I'll make to my daughter when she's old enough to hold me accountable.

I know what I need to do. Now I just have to do it.

I need to remind myself every day that it's not about me, it's about what I do, and who I do it for.

Sometimes, You're Just Going to Look Stupid

**If you're looking for the at-home workout challenge, you've come to the right place. Remember, this is just an example of something you can do. Feel free to go beyond this list and push yourself even more. If you can't fathom running then walk; can't walk? Crawl! Remember, the important part is to move; it's not important how fast you move!

Here is my workout for today:


5 minute warm-up walk
11 minute run
2 minute walk
11 minute run
5 minute cool-down walk


__________________


One worry that gets brought to my attention often from peeps who are thinking about starting a workout or running routine is that they are going to look stupid. Truth is, they're probably right - the fact is, most of us look pretty stupid when we're active. In case you haven't noticed, there aren't too many natural born athletes just walking around us and working out near our station. 


Now, you will come across some that just look like they were born to run, lift weights, etc, but remember, they are the exception to the rule. Do me a favor - next time your near the local gym, peak in the windows. You will see a smorgasbord of people all with the same level of intensity, coordination, looks, feel and clothing choices + or - 10%. There will also be people just like you who have never been in a gym or haven't been to one in years and are looking to make a positive change in their lives. Point is, there are plenty of "yous" in that gym.


Here's another favor to ask - pay attention to the people running on the streets. You'll notice that plenty of them move at a snails pace and don't exactly look like they're taking the running world by storm. I often point to people running and say "Look! There's my running partner" in reference to them moving so slow. But, and this is a big but, they. are. moving. I can assure you that many of them would love to go faster physically, but they just simply can't. They aren't physically able at this time. Just like you. Just like me.


What I have described above was easy as I was just telling my own story - especially when it comes to running. And again, I use the word running very loosely. There are times like today that many would consider what I did a slow jog or maybe even a fast walk. But do you know what? I don't care. I often catch the eyes of the people who pass me in cars, and what they are thinking is pretty clear - "That guy looks like he's hurting". They're right, I am! I can promise you that when I run I'm slow, I look the opposite of athletic, I'm in pain and mostly, I look really, really stupid.


So why am I even bothering to write all of this? Because I want you to look stupid too. More than that, I want you to take a chance on doing something active that you've never tried for fear of people giving you funny looks. I can't tell you the number of times people have moved off of the treadmill near me because of a coughing fit. Multiple people in the gym have told me that they don't want to get sick and to please leave the gym if I am. I've had more pairs of eyes look at me and think "that guy has no idea what he's doing" than I have had look to me as an example. For goodness sake, I've had a woman stop me on the road while I was running and offer to take me to the hospital!!


Each and every time this happens I react in the same ways - I either take it as an opportunity for Cystic Fibrosis awareness or I give them a look that says "What's up? Can I help you??". See, they don't have the opportunity to go home to Mandi and Mckenna. They don't feel what I feel when I breathe. They won't be doing a treatment for me. They will most likely never see me again. They don't have the same motivation to live that I do. They don't know why I'm there. They don't have the same skin in the game. They don't understand that I'll do anything to be at my best for my family. 


There's really only one thing I care about when I get those looks...


All I care about is being the best version of myself every time I put two feet on the ground, whether it's in the gym or on the pavement, even if I do look stupid in the process.   

Interval Training

"Has anyone else noticed that a minute of running is at least 45 seconds longer than a minute of walking??"


I posted this yesterday on Facebook after my cardio workout. I decided that I would do some interval training to switch it up a little as just running can get a little boring sometimes. (I would actually highly suggest interval training to anyone else who wants to change up their running routine as well). Basically, it's a series of sprinting, running, jogging and/or walking done in timed intervals. Yesterday I decided to do 1 minute interval training. I started with a five-minute warm-up walk and then immediately went into a 1 minute sprint followed by 1 minute of walking. I repeated the sprinting/walking cycle for about 16 minutes. All in all I covered about 1.5 miles of ground.


One thing that I love about interval training is that it always seems to get out more mucus than just straight running. I have a feeling it's because I bounce much more sprinting than I do when I'm running. And I know for a fact that I'm pulling for air much harder and it's getting deeper into my lungs. Doing the sprints followed by a 1 minute recovery walk lets me concentrate on getting as much air into my lungs as possible (as well as trying not to fall flat on my face from a lack of oxygen!). Yesterday was no different as I'm pretty sure I coughed up some stuff that has been down there for quite some time. Again, I would highly recommend this form of training to everyone.


But to get back to the quote I started with in the beginning -  it is amazing how true that feels. Like clockwork, I would look down at my watch 40 seconds into my sprint thinking that there was no way I would have any time on my minute left. And just like clockwork, about 1 minute into my walk I would look down at my watch swearing I was only 30 seconds into my recovery. It was seriously astonishing to me! It was consistent the entire 16 minutes and I can't help but think what my brain must've been processing each and every time I took off into my sprint. The hope of course is that those sprints feel shorter and shorter and those walks feel longer and longer. Although when I happens, I have to change up the routine!


Have any of you ever tried interval training?

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. 

Kicking Cystic Fibrosis!!

Guest Post by Eric Verdon

My name's Eric, and I'm 17 years old from the Great White North's capital, Ottawa. On October 27^th I officially made it 4 years that I have been blowing an FEV1 of over 100%, and I owe those numbers to exercise. At the age of 4 my parents put me in soccer, and it wasn't until I was 16 that I stopped playing. I've spent countless hours at the soccer field near my house, literally countless. I have spent summers there, the soccer field WAS my second home, and it really payed off. I managed to make a provincial team, and I played with them for three seasons. All of that time spent running around the field with a ball, practicing my shot, and whatever else I ended up doing there for hours definitely payed off for my soccer skills, but more importantly it payed off for my health.

This all started about 5 years ago, and during that time it definitely started to show that an increase in my health was being made. In about 2 years, I jumped 3 divisions and made it to a provincial level, and from 14-16 I continued to play with the same team. The practices were brutal and and honestly there were mornings I wasn't getting out of bed because my abs hurt too much, or because us scrawny soccer players can do a max of 15 pushups and our coach squeezed one more out of us. In the end it all really payed off, because once I made that provincial team my PFTs finally reached 100%. The amount of mucus I was coughing up was huge, disgusting really (ask my girlfriend), but great for me. The numbers didn't increase much for a good while after, not until I quit soccer and began running.

Running is such a simple thing (and free!) and so good for people like us with Cystic Fibrosis. I don't exactly know why running gets stuff up, maybe it's the increased and harder breathing, or maybe it's the vibration of both feet hitting the ground, but whatever it is it gets junk out of our lungs. I began running about 3-4 times a week about a year ago, and not long after that I did my first 10km run, and did it in a time of 44:37. That's when I hit my highest PFT at 114%! It's been all over the place since then, as I've dealt with minor complications, but not once did it drop below 100%.

Now I've added swimming, biking, and lifting weights to my regime, and am really looking forward to completing my first triathlon next summer! Every single Cyster and Fibro can benefit from running twice a week, even once a week! There are countless stories of CF patients increasing their lung function and living a better life because of activity, and it doesn't necesarily have to be running, go join a recreational soccer team, basketball or any of the sort! Go get a gym membership and start lifting weights, or use the cardio machines they've got there. Anything is better than nothing! If this 17 year old boy can take control of his health, then anyone can.

Bio: My name's Eric Verdon, and I'm from Ottawa, Canada. My parents put me in soccer at the age of 4, and I continued it until I was 16. When I stopped playing, I found a new passion in running. Today I swim, bike and continue to run in hopes to complete my first triathlon next summer. I absolutely love learning about the body and am planning on studying kinesiology next year in hopes to continue my studies into medical school, focusing on sports medicine.

Note from Ronnie: I just want to thank Eric for sharing his story. I think it's so important to remember something he touched on - something is better than nothing! Many of us decide that since we can't do a lot of exercise, we'd rather just do none at all. Just as Eric pointed out however, there are plenty of options available to us if we want to get active. It's all about us choosing to quit making excuses and as Nike says, "Just Do It!!". Thank you again Eric for sharing your inspirational story!

Extra Running Motivation

Had a pretty cool experience today -running with my daughter!

One of the gifts we received was a jogging stroller as my mom knew that Mandi would want to get back into running as soon as possible. Little did we know, that not only would it be something that I would enjoy, but something that I could use so soon.

As many of you know I have been rehabbing my foot for quite some time now and have not been able to run. It's been months now that I've been backing off any exercise that requires the pounding of my feet and strangely enough, I actually missed running. I would expect somebody who loves to run to feel those emotions, but coming from a guy who absolutely loathes running, I was surprised that I missed it. Fortunately while rehabbing my foot (this consisted of different stretches, ice, heat, rest etc.) I did discover a great way to get my cardio in, as I've also talked about on this blog, and that is spin class! Spin class is 45 min. of pure torture but it gets my heart rate going and keeps my lungs expanded for almost the entire time. I'm so thankful that I discovered that class.

Sorry, I'm getting off track.

Anyway, during the last couple of weeks I have been attempting to slowly get back into running. I'll go for a short run here or a quick sprint there, either on the treadmill or outside, in attempt to slowly work my way back into running shape. I've also been trying to pay attention to my body to make sure I'm not pushing it more than I should be. The last thing I want to do while getting back into this is re-injuring my foot. I was planning on going for a run today and when I mentioned this to Mandi she suggested that we run together with Mckenna in tow. I had first balked at the idea knowing that Mandi generally leaves me in the dust, but just as quick as I balked, she reminded me that she is also getting back into running shape. So off we went!

I insisted on running with the jogging stroller because I really felt like it was something that could come in handy as my legs started to tire. I pictured myself casually “leaning” on the stroller for a little bit of extra support towards the end of my run. Let me tell you, not only did I lean on the stroller a bit towards the end, but I also leaned on it a bit throughout the entire run. It provided some much needed support and I really feel like I ran faster than normal. I'm not sure if this is the case or not but sometimes the feeling of running faster is just as good as actually running faster :)

The last thing that running with the stroller provided was some good old-fashioned motivation. When I set out to run, in my mind, I didn't see us running as far as we did. That was the awesome thing about having Mckenna with us. Every time that I wanted to slow down or stop I just looked down and saw her staring back at me...well, she was asleep, but you know what I mean. Let's be serious, if I can't be motivated by that, I might as well pack it in.

I can tell you this, I won't be packing it in anytime soon!!

First Day Back in the Saddle

As many of you know, you're supposed to take some time to recover after having a baby. Makes total sense, you shoot a cannon ball through the eye of a needle, your body probably wants to take some time to heal. Generally they tell you to wait 6 weeks to really get back into your normal routines. However, 6 weeks seemed a little long to me. My discharge instructions were to not lift anything heavier than my baby...really?! They think someone can't and won't lift something heavier than 6lbs for 6 weeks?! That would mean I couldn't even lift a full gallon of milk on my own - a little silly if you ask me.

Anywhooo, I decided to just go by how my body was feeling, and slowly ease back into my normal exercise routine. Last week I started walking farther distances (2-2.5 miles) to see how my body did with that. I felt great and didn't have any increased bleeding (Sorry if you're eating lunch!! That's just one key thing they say to watch for to know if you're over-exerting yourself). Since I was able to walk farther and do more last week with no issues, I decided to try to run starting today. I'll be honest, I wasn't really looking forward to it when I woke up this morning. I was excited to get back into my normal groove, and this was the first step, but I wasn't exactly giddy about strapping on my running shoes. But today was the day that I had committed to in my mind, so today was the day I was going to do it.

I was nervous. Why? No clue. Maybe because I wanted so badly for it to be easy and comfortable, but I was a afraid I'd feel like Frankenstein, awkwardly making my way down the sidewalk. I decided to suck up the anxious feeling (what else can you do with an unjustified emotion, right?!) and hit the road. The first few steps felt just like I anticipated, awkward but exciting. I felt great. "I'm doing it...I'm doing it and I'm a rockstar!" I thought to myself the first 30 seconds. "People are wimps for waiting 6 weeks." I thought to myself as I hit the one minute mark. "Gosh. I stayed in better shape than I thought." I pat myself on the back as I made it another 30 seconds. "Ouch, what's that?!" I was quickly humbled 2 minutes in. "Yikes, that's a serious side cramp," my growing head began to shrink. "OOO yowzers, that doesn't feel awesome," I thought as my left knee let me know it wasn't excited about running. "OH" "EH" "OWWIE" I thought to myself as I Frankensteined down the sidewalk.

Never-the-less 2 miles and 20 minutes later the torture was over. I was back in my house, forgetting the discomfort of the first time back at it. "Ok, that wasn't so bad." I thought to myself as the discomforts from the run had already faded away....faded away just as quickly as they came; quickly enough to make me think, "Welp, at least tomorrow will be better."

Moral of the story? Running pretty much sucks for everyone who's out of shape! But I can assure you, there's no day as bad as the first day. So if you're out of shape and starting to run again...join me in my new anthem: tomorrow will be better!

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!!

Outrun CF Virtual Race: October 1, 2011!

The first Out Run CF Virtual Race was a huge success. Runners and walkers from all over the world came together with one thing in mind, to Out Run Cystic Fibrosis! This fall, on October 1, 2011, we plan to do it again. The Rock CF Foundation and CysticLife are joining forces, once again, to bring you another Out Run CF Virtual Race.

In case you missed out last time, or need a refresher, here is how it works. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! Participants will find a route near their house. Then on October 1, 2011, EVERYONE will lace up their sneakers and hit the pavement in their Out Run CF shirt (Each registrant will receive a t-shirt unique to this fall’s race from us in the mail).

No distance is too long, or too short. YOU pick YOUR mileage. 1 mile? 5K? 10K? 10 miles? Half Marathon? Marathon? It’s up to you! Nothing is too fast or too slow YOU pick YOUR speed. We just want to get the entire CF community out of their houses and into their running shoes on the same day, for the same cause.

Registrants can blog about their training, ask questions, and share tips on CysticLife.org. We want the entire site to be plastered with talk of exercise, running, and encouragement. On race day, we want people to post their times and their experiences. Let’s make this Virtual Race even BIGGER than the first one! Let’s make it the biggest race the community, and the world, has ever seen!!

So here again are the hard facts:

Who: Everyone
What: Outrun CF Virtual Race held by Rock CF Foundation and CysticLife
When: October 1, 2011
Where: Anywhere
Why: Because anyone can run—whether it’s for a minute or a marathon! Together we can Out Run CF.
How : Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

Helpful sites to get you started:

CysticLife.org—Blog about your progress, ask questions about training to the community, post Airwaves with your daily run updates, connect with others to encourage them and be encouraged

Dailymile.com—Make and account and join the Rock CF/CysticLife group to track your miles and keep track of others! http://www.dailymile.com/groups/1463-rock-cf-and-cysticlife-virtual-runners/

Facebook.com—Join the Out Run CF group to see how many people are outrunning CF and connect with them! http://www.facebook.com/pages/Out-Run-CF/164020056961598

Runnersworld.com—Get inspired, find training programs.

My Foot be a-Healin'!!!

I've been operating on a bad wheel for about the past month now but fortunately my exercising hasn't stopped. Soon after I got out of the hospital I went for a long run and since then my foot hasn't been the same. I had my lung doctor look at it (who also happens to be a runner) and she said that it sounded/looked a lot like plantar fasciitis. I've had foot problems since I started running so this was nothing new, it was just a bummer that it happened so soon after my hospital stay. I had started running in new shoes so we figured that could have been contributing towards the problem. Her recommendation was that I rested it as much as possible and stretch it from time to time. Since then my morning walks have been scarce (to rest my foot) and I've mostly been doing an exercise bike or my bicycle for workouts. But after a month of no running I'm definitely chomping at the bit to get back on the treadmill or street. This is definitely one of those classic cases of "you don't know what you've got until it's gone".

Yesterday, for my workout, I decided to walk at a decent pace on the treadmill. Like I said before, I'm usually on the exercise bike which doesn't put any weight on my foot so getting on the treadmill can always be interesting. I've been on the treadmill since injuring my foot but I've always kept it at a very slow pace (almost just letting the treadmill act as a stretching mechanism for my foot). Yesterday was different however. I continued to push up the pace until it got uncomfortable to keep up with it. And it wasn't my foot that was holding me back, but just my natural walking pace. I ended up walking for about 45 min. with minimal pain or discomfort in my foot (about 2.5 miles). This is the most positive sign in the last month and it's making me hopeful that I may be able to run again soon.

I ended up going back to my old running shoes as the new ones may have been contributing to the problem. I don't plan on going back to the new ones unless it's completely necessary. Now Mandi will tell you it is in fact necessary because I'm missing part of my shoe on the old ones, but my feet felt great after walking in them so they'll stay. The mistake I made in purchasing my new shoes was actually getting a half size bigger than my old ones. It's funny because the smallest things can really make a difference in running shoes. When I started running over two years ago I was in the absolutely wrong shoes for me and after most of my runs I couldn't physically walk without shooting pains in my shins, knees and hips. After getting fitted with proper shoes all the pain went away and I was able to run with ease...well, ease in my book.

Just thought I'd fill you guys in on what's going on with me, exercising and my hopeful return to running. I've been fortunate that my lung function has actually gone up since getting out of the hospital (61% to 73%), but I'm sure a lot of that has to do with continued treatments and getting in any kind of exercise that I can. I've also been doing breathing exercises each and every morning before I get out of bed. Who knows if that has anything to do with my increased lung function but I can tell you that I feel much better and my lungs feel open before I even set foot on the ground in the morning. I would recommend that everyone at least give it a shot. I know for me I have a ton of mucus that just sits there overnight while I'm sleeping and doing those breathing exercises gets everything moving around.

That's it for my exercise update. If you're the praying type keep my foot in mind and if you're not...well then I guess you're not. Any good thoughts, shout outs, well-wishes, or anything else that you can think of that has to do with my foot will be appreciated!

Thankful Thursday - Salty & Sweet

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for runs. I am finally able to run again now that my ovaries have shrunk back down to their proper size. I am slowly working back into it, but yesterday I was able to get a 2.5 miler in and it felt SO good. I'm hoping I can continue to work up to running 3-4 at a time, but I'm just so thankful that I can run at all!

I'm thankful for my Harkins Loyalty Cup. It's a cup you pay for at the beginning of the year, and then you get $1 drinks when you go to the movies. And while I'm thankful for that aspect, I'm more thankful that I've had a HUGE cup to drink out of around the house. It's a 32 oz ginormous cup and I've been drinking water out of it all day long. This wonderful cup has helped me drink a TON of water each day! And I'm sure peanut is thankful too.

I'm thankful for tradition. I got up early on Friday morning to watch the royal wedding and I found it all so awesome. I just think all the tradition is so fascinating. I am thankful there is such thing as live television and that I got to watch it all, just like I was there! Side note: Kate may be the most beautiful woman ever!!

Ronnie's List:

I'm thankful for a giving wife who speaks my love language better than any other. If you have no clue what I'm talking about in terms of love languages than you should check out the book The Five Love Languages. It's basically helps you narrow down how you receive love from another person and what you identify as "love". I forget my two main love languages, but I know one of them, acts of service. I feel loved when Mandi is willing to do stuff for me. Tonight was a perfect example of that; I really wanted something sweet and she offered to make me something. I didn't ask for it, but ended up snacking on Golden Graham treats made from scratch. Got to love it! Thanks babe!!!

I'm thankful for sweat. I may not always be thankful for the natural shower that my body gives me once in a while, but today, it was welcomed. Whenever I'm in the gym, I love to sweat. I once heard someone call it a "liquid confirmation that you are working hard" and I couldn't agree more. When I start really sweating in the gym I always get an extra burst of energy cause it feels like I'm "reaping what I sow" so to speak. Today I had a light grey shirt on which turned dark grey by the end of my workout - sort of the icing on top.

I'm thankful for my hospital including me in their CF Taskforce meeting. Basically, my hospital is trying to make the hospital a more enjoyable experience for all parties involved - CFers, nurses, dietitians, etc. They threw together a task force to look at certain issues that may happen during a hospital stay and figure out ways to improve upon the deficiencies. What was cool, was that I got an inside peak into "non-patient" issues and was able to look at certain issues as a healthcare provider. To really understand a lot of the issues we face in the hospital you've got to see it from both sides. I'm fortunate that I was able to hear from their perspective and I can only hope that I added value and a true patient perspective on my end.

So, what are you thankful for today?

Fun-Filled Saturday

I've been charged with writing a blog today, and by charged I mean I told Ronnie I'd write one to give him a "day off", then totally forgot that I told him that, and then remembered again at about 10PM last night. So here I am - getting ready to throw up some thoughts on a page. I sat staring blankly for around 5 minutes. Deciding I needed to put an end to procrastinating, I began looking through pictures, hoping that would get my juices flowing and I'd magically have something awesome to say. Unfortunately for you, no juices are flowing and so I have nothing awesome to say.

So my go to when I'm blanking? Random update blogs. Who's ready for a random update blog giving a little look into our lives, totally unrelated to CF and totally unrelated to baby (I'll try at least)?

First things first, I'm really excited for today. This week we decided to participate in Bountiful Baskets, a co-op type deal for food. "Huh?" you're thinking. Yeah, that didn't make much sense, I'm certain that is not their catch phase: "Bountiful Baskets: your co-op for food." I'll do my best to explain what it is, but I have a feeling visiting their website will be much easier. You sign up and pay $15 on a Monday or Tuesday online, then Saturday morning (between 6AM and 6:20AM, I'm not joking) you go pick up a huge laundry basket of fruits and veggies, all grown in state or in neighboring states. Apparently it's a great way to get a lot of fruits and veggies at a great price. The downside is that you don't get to pick exactly what you want, the upside is you're forced to eat tons of fruits and veggies before it all goes bad! I'm really excited to see what we get in our basket today, and see how the whole process goes. We'll take pictures to show you our haul!

I'm also excited for today for a different reason. And that reason is RUNNING. I haven't been able to run since we started my stim meds back at the very beginning of February. But at our last ultrasound (dangit, I said ultrasound, does that count as baby talk?) my ovaries were checked out and the nurse said she didn't see any more cysts. I didn't specifically ask if that meant I could run, but considering that was the reason I was told not to, I decided that was the clearance I needed to start pounding the pavement again. It's been awhile, so I'll have to work back into it with a nice and easy run/walk for the first few days, but regardless, I'm thrilled. My goal is to get back to a point where I'm able to run around 3 miles, 3-4 times a week. We'll see what my body has in mind though.

Today is also a good day (man, this blog is turning into the theme "today rocks my socks"...I'll go with it) because we get to bake. Ronnie and I LOVE making desserts. My guess is it's eating them rather than actually the act of making them, but what's the difference, right? Anyways, for our Easter family get together, Ronnie and I are in charge of bringing the desserts, so we'll be making two different desserts today to bring with us to our Aunt Janna's easter shin dig on Sunday. I haven't finished pinpointing the recipes yet, but we'll post pictures of the process once we find the recipes and make the goods. My guess? One chocolatey, one fruity - can't go wrong with a little bit from both ends of the spectrum, right?

Annnnd that's about it. I hope you all have a fabulous Saturday as well. Leave us a comment and let us know what fun things you have going on today!

Is Exercise for CFers Different?

I've had this question posed to me more than a hand full of times both on Facebook and CysticLife, so I thought I would answer it here as well as pull some quotes by other very knowledgeable cysters and fibros. The following question was posed by a fellow cyster and to be honest, I was a little bit shocked by her doctors attitude (although he may have had the best of intentions):

Okay, so whenever I think of excersize, I typically think of going to the gym, riding a bike, jogging, or doing something with a little sweat suit on. Basically, getting strenious excersize. So I told my doctor that I get totally short of breath when I do things like that, and on a bad day it's even hard for me to climb up my stairs at my apartment. So he told me that excersize for us, is basically something that gets your airways stretching and get's you huffing a little hard... And that if we are excersizing to the point of us laying on the floor sucking on our inhalers (which I have done, lol), we are actually probably doing more damage than we are helping ourselves. What do you guys do as far as a 'light load' of excersize, that gets your airways flowing, but doesn't make you totally SOB and have to sit down? I find it hard... Maybe it's just me.

The following was my answer to her:

I think it's important to understand that EVERYBODY sucks a little wind when exercising, especially those of us who are out of shape. I agree with your doctor to a point, but I myself wouldn't accept not striving to exercise like everybody else.

When I recommitted myself to exercising, last year, I couldn't jog 1 minute with out stopping. I got on a running program and in 10 weeks ran 3 miles. It's important to go at your own pace, but to also set yourself a goal and then set out to accomplish this.

It's also important to point out the benefits of exercise to lung health. Last January my FEV1 was in the 20's, I then recommitted to exercise and by October had my FEV1 up to 68%, the highest since 2005!!!

That's what I think is SO important for every cyster and fibro out there to understand, Exercise is tough for everyone, especially when just starting out. Think about it, why else would there be so many people out there that say exercise is their New Year's resolution, EVERY year. It's tough. It's NOT EASY to stick with. And yes, it may be tougher for those of us with CF, but the case can easily be made that it's also more valuable. I've never ever met a fellow CFer that regretted exercising. It's quite the opposite, they're ecstatic. To put it simply, do you find more joy when you accomplish something that took no work or sacrifice or something that took a ton of it?

I like how this fellow fibro put it (who by the way is training for an Ironman):

Even though we have CF we can still do anything anybody else can do our training is just going to be a little harder and we'll have to train a little longer, but we can do it. The biggest thing you have to learn is patience when it comes to endurance with exercise it takes us a little longer to build it up. Stick with exercise, it will only benefit you.

He's so right. We CAN do anything if we set our mind to it. It's often times just a case of setting a goal and doing absolutely everything to accomplish that goal. Don't let setbacks discourage you either, use them as motivation to propel you forward on your mission. Listen, there's days that I just can't drag my lazy butt out to run. It happens. But when it does, I make sure to really step it up the following days to "make up" for the time lost. We have a tendency to allow one bump in the road become an impossible obstacle and it doesn't have to be that way. Get over the bump and then put the pedal to the metal.

Tuesday's Tidbits: 18% & Taxes

We just got back from doing our taxes, my brain is a bit fried so I won't be launching into any long and thoughtful blog today. There are a few things however I can rant about and also a few updates for ya.

Getting back to taxes, seriously, what is with those things? I won't turn this into some big political debate, but taxes are something that I don't think I'll ever fully endorse. It's not because of the money or because of the huge brain freeze that it gives me, it's because I just can't trust a system that not one single person on earth truly understands. We had the sweetest lady helping us out this year with our taxes and although she was very knowledgeable, there were still plenty of things she was a little unsure about. I mean take one look at the tax code and you'll see why there isn't anybody on this planet that can ever claim to be an “expert”.

My foot is getting better but I'm still not to the point that I trust myself to run on it. For those of you that don't know, I injured my foot last week during a long run in which I've never fully recovered. I've been trying to take it easy and stay off of it best that I can and avoid any exercises that pounds on my foot. I'm doing the exercise bike a lot and have managed to get a couple good walks him. I'm really hoping that it continues to get better because I haven't been able to run for over a week and it is starting to get annoying.

I can't think of many things that I've enjoyed hearing more than my little peanut's heartbeat. We're fortunate that we've been able to see his/her heart beating almost every week now, but we've never been able to actually hear it. Well yesterday we had our first belly ultrasound and I was able to listen in on the music that the little peanut is creating. I wish you guys could of seen my face (this will be impossible however because they don't allow videotaping), but I can assure you that I had a smile from ear-to-ear.

I've been keeping up with gardening so far and I've got to tell you every time I go in the Home Depot I never walk out empty-handed. I must have some type of spray for just about any problem that could ever present itself in my "luscious" garden. I don't read too often, but I even picked up a book solely about gardening in the deserts of the Southwest. It's called "Extreme Gardening" and so far I've been able to pick up a couple of tips that I've actually put into practice.

I really feel for Butler University. I mean I was really sad when U of A lost to Connecticut last week, but I took comfort in the fact that the Cats overachieved and were really playing with house money. I also gave up the excuse that we picked a bad night to have our worst shooting performance of the year. I'm now convinced that it wasn't us playing bad offense, but it was Connecticut playing solid defense. They absolutely smothered Butler tonight with their stingy defense and forced Butler to shoot a season-low 18% from the field (which by the way as I understand it is the second worst shooting performance in the history of the tournament). So congratulations Connecticut, you guys deserve it and I promise to get rid of my Jim Colhoun voodoo doll.

Well, that's all I've got tonight. Have to hop on a treatment and go nighty night!

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.

I Outrun CF.

Yesterday was a great day for the CF community at large. All over the nation, and in fact the world, we got together (virtually) to "out run" CF. The Rock CF and CysticLife foundations teamed up to put on a special virtual race that could be run anywhere, by anyone and at any distance. When putting together an event like this you never quite know how it's going to turn out and I think that the foundations behind it are very pleased and surprised with the results. We had runners, joggers and walkers post pictures from all over the world on the Outrun CF Facebook page as well as their own personal blogs which I've included some examples here here here here here here here here and here. I mean seriously how cool is that? It was as simple as registering online (over 200 people did just that), putting on your T-shirt and getting a group together (or running solo) all in the name of out running CF. It really warms my heart when you can see the community get together and get behind something as simple as this. It was as if with one loud voice we all screamed that we were not going to take this lying down and we were going to do what we had to do to literally out run CF!

So how did I out run CF yesterday? Well, at 7:30 in the morning I laced up my shoes, mapped out my course and then hit the pavement (right after my morning treatment of course!). I set out to do a 5K not knowing whether I would run the entire time or do some walking intermittently between the runs. The answer is I ran as well as walked. I certainly wanted to run the entire time but I didn't have the legs nor the lungs yesterday morning. Good news is that my legs probably held me back more than my lungs did. This entire last week I ran every single day and by the time Sunday rolled around my legs were pretty fatigued. After being in the hospital for 28 days it definitely takes some time to get my conditioning to the point that I can run for three straight miles. However this time out of the Hole I'm further along than most times due to all the workouts I did while in the hospital. All in all I was very happy with my time and my distance and most of all that I was out running CF with each step.

Mandi also outran CF yesterday. Under doctors orders she's not allowed to run just yet however she did manage to walk 6 miles. I know it's killing her not being able to run and she is counting down the days until she gets the green light. Right now she just has to take it easy as our little peanut grows. Mandi's definition of "taking it easy" is different than most others though. She's been doing all that she can to stay active and generally takes at least two walks a day plus whatever she has going on at the gym. Her dedication to stay fit and healthy is such a large driving force for me in my journey to awesome health and lung function.

I encourage all of you to click on the links above, "like" the Outrun CF Facebook page and check out all the blogs yesterday that were out running CF. If you have any blogs or pictures that you'd like to share of you out running CF please include the link in the comment section below. Thank you all who participated and please know that this was not a one-time event! If you weren't able to out run CF yesterday I promise that you'll be out running CF in the near future!