Great Day with Two Sour Notes + Movie Review

7:00am: Today was an overall great day with only two sour notes. We were all up early this morning cause we had to take Mandi's parents to the airport. That of course was one of the sour notes. It was great to be able to spend time with them, which we don't get to do often considering they live in China, and I hope they can have another long trip out here real soon. After dropping them off, Mandi and I got back on board with our weekend tradition, that's right, good ol' Dunkin Donuts! The bagel sandwich and coffee tasted extra good this morning after my long absence from it's sweet sweet nectar...wait, not nectar, but you know what I mean. From there we swung by my place and caught up with some DVR of "So You Think You Can Dance?". Does anybody else out there watch that show? If you don't, they're down to the final 5 couples and I would recommend watching an episode or two. It's amazing what these dancers can do, especially when it comes to styles outside of their own trained skill set. I have to watch it on DVR though so I can fast forward through one of the judges. I think her name is Mary and she makes my skin crawl, if you watch the show you know who I'm talking about.

9:30am : After a little bit of TV it was on to the gym. We had shoulders and legs today which we knocked out pretty quickly. My shoulders have been a bit sore the last couple of days for some reason so I took it easy on them today. It was nice getting to the gym early on a Saturday morning cause it wasn't busy and we still had the whole day ahead of us. We finished up the gym session with 15 minutes of cardio on the bike. Here's what's confusing though: Mandi and I did the exact same length of time and I averaged more RPM than her, yet she finished almost a full mile ahead of me in distance. She did have it on another resistance level, but we found it strange that that would affect distance. Anybody know the answer to that riddle? I sure don't but would love some insight.

Total Distance: 4.2 miles

Movie Review: I'm actually embarrassed to say this, but I went and saw that new movie Bruno today (the second sour note). Mandi and I went on a whim after the gym to the movie theater. Usually I will look up movies on kidsinmind.com (a service that rates movies on language, sex, and violence) before seeing any movie. Since this was a last minute thing, there was no consulting with that site before picking a movie. We had both seen Sasha Cohen's first movie Borat and thought it was funny, and although crude in parts, I didn't think that it was over the top. Bruno IS over the top. We both felt like walking out several times, but I think we thought that it would become tamer. It never did. How this movie isn't rated higher than R I'll never know. It is SO CRUDE that it is literally disgusting in parts and I turned my head away from the screen several times. Sad thing is, the movie was at it's best when it wasn't trying for just pure shock value. When he wasn't forcing it and seeing just how far he could take things, it was much funnier. He ruined the movie by doing things that he knew would push the envelope and frankly, are pretty detestable for film. I could never nor will ever recommend this movie. I felt dirty and ashamed after walking out of the theater and I can never just "go to a movie on a whim" again. BIG MISTAKE.

Total Distance for Day: 4.2 miles

Inspire Just ONE Person

First, I wanted to thank everybody who responded both on this blog and to my personal email about some changes that I could make with RunSickboyRun. I'm still looking for other suggestions (cause I didn't like any of the others :) just kidding) and by clicking here you can get back to that blog. I would love to hear any and all changes that you would like to see. It's very important to me that I write a blog that people will enjoy going to and then telling their friends about. It's all about awareness. It's amazing the people that will follow this blog daily now. I of course have other CFers and their families, but I also have runners, triathletes, old friends I haven't seen in 10 years, and random people from random places. If I could inspire just ONE of those people to join the cause and fight along side of me, I will feel that my mission was accomplished.

I think we're really close to giving CF a big blow to the gut and taking it down a few notches. We just need help with that final push. That's where all of you come in, we can't keep CF a secret. People need to know about the disease that has taken so many of my friends, caused heartache in so many families, and eventually will be the end of me. We can't sit back and just let this thing run it's course, we need to fight, and fighting starts with creating awareness. You can't support what you don't know. People won't part with their hard earned money unless you give them a reason. I think we can give them that reason, don't you?

On a completely different note, I didn't get to the gym until later today, but Mandi's dad was able to join us. I let him pick the workout, and sense he won't be able to workout for a couple days due to travel, he took us through a total body workout. We lifted arms, chest, back, and abs. Ok, so not total body, upper half of body :) It was nice to do something different for a change and at the pace we went my muscles got fatigued very quickly. Overall, we all got a great workout in and I'm definitely going to miss Eric (Mandi's dad) being around. Her parents take off tomorrow, but then Nancy (Mandi's mom) will be back in a couple of weeks. She then will go back to China around July 30th. It's been so nice to have them around and it really stinks to see them go.

And my last completely different note: You need to read this next link I give you. It's my gal CysticGal's blog and she wrote a GREAT blog about exercise and excuses. You need to go to it by clicking here. I can't be clear enough, GO TO HER BLOG AND READ THIS POST. It is certainly a post after my own heart.

Calling All RunSickboyRun Readers!!!! I Need Your Opinions!

I'm always looking for ways to improve upon this blog and I am asking for your suggestions. What does this blog need that it doesn't have? What does it have that it doesn't need? Does my writing style stink? Am I addressing topics you even care about? Would you like to see other features or information on this blog?

I started this blog as a resource for the CF community and to also make CF personal (hopefully) to those not personally affected by Cystic Fibrosis. It is also good place to track my progress and hold myself accountable, but that is not the main reason for this blog. So I am asking for your help to make this blog better. And in case you're worried about hurting my feelings or "stepping on toes", please don't be, I'm asking for you to be brutally honest. If you don't want your suggestions or comments seen publicly just email me at coachsharpe@cox.net

Thank you all so much and I look forward to your responses!

Ronnie

Exciting Day for Mandi

6:00am: It wasn't easy, but I managed to roll out of bed this morning at 6am. J Bell was looking a little depressed to me from lack of consistent walks, so I wanted to make sure I got one in this morning. The weather cooperated with the plan as it was probably only 85 degrees or so during the walk. I worked up a decent sweat, but I think most of that was from yanking on J's leash to stop her from going after the bikers whizzing past us. The road was absolutely full of them today, so I did quite a bit of yanking. If you told me that 50 bicyclist passed by us today I would not be surprised. Hopefully one day I'll be joining them, then again, I'm not so sure about the spandex.

The walk went really well but we walked at a slower pace. Again, a huge factor was probably Jezzy and her constant pulling on the leash, but I did feel that we were moving slower. Good news is that my feet didn't hurt at all during the walk and only started to hurt later on in the day after walking around in flip-flops. I should probably try to wear my shoes around more, but I love rocking flip-flops, especially during the summer. Maybe I can get a flip-flop orthotic? Are you reading this Lindsey? :)

Total Distance: 2.0 miles

Side Note: So I'm sure you're wondering from the title why Mandi had an exciting day....drum roll please....She got a new car!!! We were out car shopping with her parents today (after months of research) and had narrowed it down to a Honda Civic or a Toyota Corolla. We found that they were basically the same car and that it came down to preference in style and how good of a deal you could get. Mandi preferred the Corolla style wise and lucky for her, the Toyota dealership was willing to play some ball in terms of the price. She got a SMOKING deal on an '09 Corolla and she couldn't be happier with her choice. She was walking on air (or more accurately, bouncing around) the rest of the day and couldn't wipe the smile off of her face. I'm so happy for her! I remember purchasing my own car for the first time and it was quite the event. Remember that? I remember saying that I would only hand wash my first car...I'm pretty sure that lasted for about 6 weeks.

So what crazy promises did you make to yourself after buying your first car? Or any good car buying stories? I'd love to hear from you guys.

Total Distance for Day: 2.0 miles

Listen to Your (Lungs) Body

I can tell that I'm coming towards the finish line folks. It's getting harder and harder to fall asleep and then I of course feel more and more tired each morning. I realize it's a cycle that I need to break, but I also have other symptoms that point to needing a tune-up. Where should I start? I'm starting to cough up thicker, larger and greener blobs of mucus. I feel slightly sick after every meal. I'm not sleeping as well due to coughing during the night. My stools are getting to the point that we have to repaint the bathroom after every time I'm in there cause the paint starts peeling from the walls. I'm sure there is a myriad of other things but I don't want to sound like I'm complaining, cause I'm certainly not. My point is, when you know, you know.

As a CFer you need to get a good feel for your body and listen to it when it's either whispering to you OR yelling loudly in your ear. After 29 years of doing this, I'll I need is a whisper from my body and I know it's that time. Too many of my CF friends ignore what their body and specifically lungs are YELLING at them and put off extra treatment or a hospital stay. And I know you've heard this 1,000,000 times from doctors, but lung damage is irreversible. Now that doesn't mean that you can't improve you PFT's, but what it does mean is that if your lung turns to scar tissue in parts, that lung ain't coming back. And if that lung ain't coming back, the chance of your numbers increasing get slimmer and slimmer. You need to stop the downhill slide when you start down the hill, not when you've reached the bottom. Ok, enough preaching for today! Now on to my workouts.

6:00pm: So today was another crazy "off" day. It was busy in parts and slow moving in others, but by the time I was ready to go to the gym, it was too late. Don't get me wrong, I still could have physically went to the gym, but I didn't feel like fighting the crowd. From about 5:30pm to 7:00pm it feels like you're in some packed dance club. I'm not a huge fan of dodging people while I lift, so I decided to stay at Mandi's and use some weights she has at her house to lift on my shoulders. It went well, but I got pain in them shortly after the workout started, so I limited myself to just 3 different lifts. Free weights have a tendency to do that with my shoulders, but I was hoping that they wouldn't notice that I wasn't at the gym :)

After lifting, and eating some Indian food (I think) with Mandi's parents, Mandi and I set off on a dog walk. Jezzabel was super excited for her walk and grabbed her leash and started walking herself before I had a chance to grab it from her. Her excitement did fade a little bit though as we set out on our walk and the temperature of the air hit us like a hot punch from Iron Mike. As I type this (it's 11:10pm) it's still 99 degrees outside. That means that during our walk it was over 100! The sun was setting as we were walking which was beautiful to see, but that beauty certainly didn't stop the sweat from covering my body. I was dripping liquid by the time we got back to the house. In fact, when we got back inside, Mandi's brother said, "Apparently it's still hot outside" after seeing the streams of salt water fall off my body. Here's the best news of all though: My feet don't hurt one bit. Maybe these orthotics are going to do the trick?!

Total Distance: 2.0 miles

Total Distance for Day: 2.0 miles

I Got My Foot Orthotics Today!!! (pics included)

I bring you part two of my journey into the world of foot orthotics. Today was the day that I went to try on the new devices that could possibly put me in a much better position to take care of my lungs.

So, I wasn't starting out so hot. I missed judged how long it was going to take me to get there. I still had over 7 miles to go with only 10 minutes until my appointment. Thank goodness for freeways and high speed limits. I made it to the parking lot right at 11am.

I was excited like a little kid on Christmas to get these orthotics. I really hope they are what is needed to get me back on track...literally :)

While I was waiting for some tweaks to be made to the orthotic I read this story in ESPN the Magazine. It's about a 16 year old kid that sailed solo around the world. It's stories like this that make me wonder "Exactly what are you doing with your life?"

Good bye old normal came-with-the-shoe inserts. You gave it a good run, but you just weren't meeting my needs. Sometimes things just don't work out. Maybe I'll see you around.

And just so you know, Lindsey is also certified to handle breasts, post augmentation.

Well speak of the devil, no wait, angel, here she is with my new orthotics.

She even gave me the moldings of my feet in case I need them in the future...and to hang from my review mirror.

I was obviously very stoked to get them. Here's to new beginnings!

4:00pm: I got a late workout in today. I had trouble falling asleep last night, so I decided to sleep in a bit. A bit, ended up turning into 9am! I'm definitely slowing down some and it's getting harder and harder to get to sleep and then as a result wake up feeling refreshed. It's a never ending cycle that I know a lot of CFers out there can relate to. Rest is very important when trying to take care of yourself, but for me, it hurts my health if I sleep in too many days. There is no doubt in my mind that what is best for me is to get up early in the morning and out the door exercising. I cough up a ton of mucus that way and my lungs will feel more clear throughout the day as a result. Today though, I apparently needed the sleep, so my first (and only) workout got pushed to 4pm.

I went to the gym to do arms and get in the cardio that I missed this morning. Arms went well but felt a little weaker than I thought they would. Chest and back went so well yesterday and I expected arms to follow suit, but they didn't comply. Luckily, I didn't have to decrease any weight on any of my lifts, but I didn't get to increase any either. Other than that it was a pretty normal workout.

I finished it off with 30 minutes on the bike today. I was already sweating like crazy by the time I got to the bike and the bike just made it worse. Worse of course in a good way! I absolutely love it when I'm sweating like a pig. In fact, if I'm not sweating, I assume I'm not working hard enough and step it up. Could be faulty logic, but I'm sure I'm full of that, so I'll just go with it.

Total Distance: 5.5 miles

Side Note: You may be wondering why I didn't test out the orthotics today and try to run. I was told to give it at least a couple days while my feet get used to this foreign object in my shoe. Once I feel more comfortable with them, I can give running a shot!

Total Distance for Day: 5.5 miles

Great Lung Workouts

6:00am: It felt so good to get up early this morning knowing that I was going to be going for a walk with J Bell. What made it even more special was being joined by Mandi AND her momma! Mandi's parents are still in town and we have been living it up for the past handful of days. One thing I want to make very clear to all of you guys: I may have taken the last three days off, but I have been VERY active. We've been running around a lot with her parents and getting stuff done, but we have also had a ton of pool time. And when I talk pool time, I'm not talking about lounging around on a raft enjoying a nice cold beverage (although I did do a little of that too). We played so many water games this weekend that it actually started to get a little weird. Especially when we would make up games or think of a game that you generally play on land and then brought it into the water.

My brothers and one of my best friends were also around this weekend and got to join in on the fun which made it extra special. I would say that Friday through Sunday we spent about 10 hours in the pool, of which 9 hours were spent playing games. Most of the games we played required a lot of moving and jumping and swimming around like maniacs. We also did a lot of hold your breath for the longest (which I won exactly 0 times) and how many times and back we could swim across the pool on one breath (again, 0 wins). To say that my lungs got some great workouts in this weekend would be the understatement of the year. I was hacking and coughing up a ton of stuff all weekend and I was able to spit most of it out of the pool. I definitely think I did see some floaters though. Sorry guys :)

Well, anyways, today's walk was good. It was actually a pretty nice temperature outside and my lungs felt decent when I got up. They're certainly getting a little tighter the further out I get from my hospital stay, but some of that is to be expected. All I can do is continue to be active and be faithful with my treatments to put myself in the best position to succeed. As the walk got under way I was able to cough up some pretty thick, but clear, stuff that cleared the old air bags out a bit. Generally, that's what happens: Tight when I start, but start to open up about 5 minutes into it. I can tell you one thing for sure also, my lungs felt different (a good different) all day today and I'm almost certain it was because of my morning walk.

Total Distance: 2.0 miles Time: 38'02"

3:00pm: I was also very much looking forward to getting back to the gym today. It's only been 3 days since I was last in a gym, but it honestly feel like forever ago. The rest was nice though and I actually felt very strong today. It was a good thing too. Mandi's dad joined us and I certainly didn't want to get shown up by the old man (I know he doesn't read this and we'll keep this between us, right Nancy?). It was a great workout and felt so good to get back to. I keep all of my lifting sessions written down in a notebook (in terms of weight and sets) and it is pretty amazing the progress I've made over the last couple of months. When this all started, Mandi and I were pretty much using the same weights. Problem is, she weighs about 70lbs. less than me. But seriously, if you want to improve upon your strength, I can't stress enough to you guys to bring a little notebook and jot everything down. Then, each week, try to either increase the weight or reps of every lift you do. You will be amazed at the progress you can make in such little of a time.

Total Distance for Day: 2.0 miles

So Why Don't You Exercise?

With so many new readers popping up I've decided to start re-posting some of my favorite blog posts every once in a while.

E-mail: Hey Ronnie-I am pretty new here...but have been following your blog for the past couple of weeks. I am sort of in a similar situation. For as long as I can remember I have pretty much had one IV clean out per year which would last 2-3 weeks and leave me feeling great. However, this past fall I was on IV treatment for a full 10 weeks...it was hell and even after that was all over my PFT's were still at an all time low. About a month ago I went to see my doc and my FEV1 was at 43% and he is trying to convince me to go on IV again. So basically all of this has scared the crap out of me. Since then I have been working extra hard to try and improve myPFTs without IV meds. I have always been really compliant, but I've added even more nebtreatments & chest pt sessions to my routine. My efforts have shown some improvement in myFEV1...now up to 48%...but still not enough to make me happy.

The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)

Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}

Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:

1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.

2) You NEED the benefits of working out more than most people

3) Most people CLAIM to not have the time to work out

4) Without a job, you have MORE time than most people to workout

Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.

So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First,commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.

Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.

Please keep me updated with your PROGRESS cause I KNOW it's coming.

Do Life,
Ronnie

Random Picture of the Day

That would be me after an awesome (and muddy) ATV ride through the jungles of Cozumel.

Cystic Fibrosis Video "starring" Sickboy

Video about how Cystic Fibrosis affects people in their everyday lives. Recognize anyone?