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.

My dear friend...

I'm taking this day off of blogging to honor one of my best friends in the CF community.

We'll miss you Marisa and I promise that I will never forget the great times we had together. That first embrace with your sister must have been amazing :)

Question from a reader: Why Parents?

Ever so often, I like to share questions from readers and my answer to them here on the blog. This particular question I get asked quite often, so I figured I would share my answer with all of you.

You seem to direct a lot of your "messages" to parent's of CFers, is there any particular reason why?

So I guess I’ll first talk a bit about why I’m so passionate about CF parents. I truly believe that everything starts with the parents and the sooner we can deliver a message of hope, proactivity and confidence as well as messages like "treat your CF child like you would any other non-CF child" the sooner we can start to shape that child's experience of CF. The sooner we can get parents to buy into that I think, ultimately, the healthier our community will be and that’s what we all want.

I’ve been fortunate in that I've been able to meet so many parents and CFers within the CF community. It is my experience that 99/100 times the child’s attitude toward cystic fibrosis is a 100% true reflection of the parents attitude toward cystic fibrosis. What I mean by that is I have met parents who are very bitter, angry and play the role of the victim very well and wouldn't you know it, I then meet their son or daughter and they are the exact same way. I can tell you as a patient that when you fall into the trap of being a victim or being bitter and angry, unless you are able to harness that into a positive reaction (which most people simply can’t do), it’s very hard to have the energy to really live your life. A pessimistic attitude and a victim's mentality will more likely than not affect your health in a negative way. This isn't just my opinion either, research is constantly coming out that supports this "theory".

Let me give you a real example of this. I was reading through a study a couple of days ago that showed those in the CF community who felt like they were in control of their disease were more likely to exercise. We can debate what came first, the chicken or the egg all day, but I know that this has a direct correlation in my life. One reason I exercise the way that I do is because I truly believe that it has a positive effect on my health and my lung function. When I exercise and do my treatments regularly I feel better and my lung function remains steady (I'll take anything but down!) or goes up. Conversely, when I slack on exercise or treatments, I feel worse and my lung function goes down. Can you see how this can make me feel like I have some control over this disease? Of course my question would be, is it just a feeling or am I actually exhibiting some control? In other words, am I just getting lucky? Like my "good friend" Larry Bird said, "Seems like the harder I work, the luckier I get".

You can call it ignorance or you can call me naive, but I would like to think that the proof is in the pudding. I’ve been sick at times, I’ve been really sick at times, but I never believed that I had lost control and I always believed that I could "get it back". When my doctors would say "this is probably your new baseline" it only motivated me to take a step back, assess what I could be doing better and then work harder going forward.

I really think that if we can get parents to buy into this way of thinking early on and ingrain this attitude, from a very early age into their children, some very positive things can happen. We do have some control over this. Things aren’t always going to go our way, but we have to make sure we wake up every single day and do everything we can to stay one step ahead of this disease. I can say without a shadow of a doubt that CF never takes a day off and so either can I.

I have such a heart for CF parents not only because of that initial shock of getting this diagnosis, but because of the first thing they do, Google it. I really want to change the message that they first find. When a parent newly diagnosed family Googles CF I don’t want them going to sites that are doom and gloom and depressing. I want them going to sites like Run, Sickboy, Run or CysticLife.org and be able to comb through those sites and say "hey there’s hope and we can do something about this". From that point on I would expect them to realize that there are great meds out there and great plans of action, which, if implemented and stuck with, can provide great results and excellent health.

So why do I really like to deliver my message to CF parents? Well, it's because I have a big heart for CF parents and I love the CF community and want all of us to be as healthy as possible, and whether the parents like it or not, it starts with them. No pressure :)

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!

Top 5 Snacks for a Grazer

This blog is totally random. Well random for you all reading this, but not that random for me - since I've become even more of a grazer and I seem to think about food ALL the time.

I've never been a 3 meal a day kind of gal. I'm more a big breakfast, small lunch, HUGE snack, small-ish dinner - with a few tiny little snacks mixed in (like a handful of grapes or chocolate chips). So I figured I'd share some of my favorite snacks, maybe it'll help some of my fellow grazers switch up their grazin' grub. There are some my bigger snacks...sometimes even made as my lunch.

1. Apples, PB, mini-marshmallows - This is a favorite and probably why it came to mind first. I slice an apple, measure out 2 tablespoons of peanut butter, and grab a serving of mini-marshmallows. Then you dip the apple in PB, stick a marshmallow on it, take a bite, and repeat. A little fruit, a little protein, and a little sweet (for those of us who need some sweetness multiple times a day).

2. Veggies and hummus - This certainly isn't original, but it's a favorite. I love taking a couple tablespoons of hummus (garlic and roasted red pepper are my fav) and dipping any sort of veggie in it. Most of the time I go with baby carrots, cucumber peppers or celery. If I'm really into hummus but not so into the veggies on a particular day, I'll dip pretzels into the hummus.

3. English muffin, PB, banana - This is another good way to satisfy my sweet tooth. I toast 1/2 a cinnamon raisin english muffin, spread 1 tablespoon of PB on it, and then cut up 1/2 a banana on top. I'm now realizing that a lot of my snacks include peanut butter.

4. Yogurt and frozen blueberries - This makes for a yummy summer snack, as it's a nice substitute for ice cream. I take yogurt (Dannon Light & Fit) and mix in a 1/2 cup of frozen blueberries (still frozen). As you mix and let it sit for a few seconds, the yogurt coats, and slight hardens, around the blueberries. Occasionally I'll add some cereal, like Life or Kashi Go Lean Crunch.

5. Edamame - aka soy beans - We buy individual serving bags of frozen edamame and I devour them. All you have to do is throw the bag in the microwave and in a few minutes it's ready to eat. I love covering them in salt or dipping them in soy sauce - sometimes both.

Some of these snacks are a little more common than others. Some are easier to make than others. But one this is for sure, if you've never tried them, I highly recommend them. Have a favorite I haven't mentioned? Hook me up with your suggestions!