Saturday, August 1, 2009

Locks of Love Got All of My Hair!!!

So I decided about 18 months ago or so that I wanted to grow out my hair to donate it to Locks of Love. The last 18 months were a test of endurance, commitment, and self-control...just kidding, it really wasn't a big deal. Hair grows, you cut it and then it grows again!

This was the last time a pair of scissors touched my head. The date was June 30th, 2008.

View from the front.

View from the back.

They had to put all of my hair into little pony tails to make sure there was enough length.

This is when Mandi started to get nervous.

Then it was time to shave off the pony tails!

I wanted to leave a little so I could have a mullet. Mandi said that would be fine if I enjoyed the single life :)

We managed to keep a little bit of hair, but if you look closely, it looks like somebody hit a sand shot from the top of my head and left a divot.

And there it is! 12 inches of hair to Locks of Love!!!

Even though all of my hair was gone, it still felt like I had my strength. Take that Samson!

40 Years of Hits=4 Chords

Why do all of the greatest hits from the last 40 years only use 4 chords? This video does a great job of highlighting them "all".

This is courtesy of my cousin Jason's family blog, which if you haven't yet, you should check out!

Friday, July 31, 2009

New Structure for RunSickboyRun

So I've been working through some possible changes for this blog with Mandi and this is the best that we have come up with. I've asked the you guys what you want out of this blog and most of you answered for me to be "more personal" and to share my "life experiences" with Cystic Fibrosis (as well as for Mandi to post more often :)). Well, I've listened and I think this new blog structure can accomplish that as well as hold me accountable in attaining my goals. So here it is, please let me know what you think and if you have other suggestions:

Mandi/Mom Monday- You've asked and I've listened. Mandi has agreed to post at least once a week on various topics including, but not limited to, relationship issues with a CFer, motivation for a CFer, workout/running tips, as well as anything else that comes to her awesome mind. I'm working on my mom to join in on the fun as well and post some blogs on her perspective of being a CF mom to an 80's baby. If your reading this mom, WE NEED YOU! I'd appreciate you guys leaving some encouraging comments for my mom and your need for multiple perspectives, especially from a mother who has "been there, done that".

Top Ten Tuesday- Here I will list my top ten of pretty much anything, CF related and not CF related. This will give you a chance to get to know me on more of a personal level. It could also e a fun thing for other bloggers out there to try!

Workout Wednesday- Every Wednesday I will update you guys on how my workouts are going as well as keep you informed on stats like my weight and total mileage for the week. This will still hold me accountable for trying to push myself to actually become a runner.

Thankful Thursday- Sometimes I think we can all get a little lost on how much there is to be thankful for. Here I will tell you what I am so thankful for in my life and why.

First Friday- This blog theme was started by some other fibro/cysta bloggers out there and I don't see why I can't make it a weekly thing. Instead of running down a list, I will take a single "first" in my life (could be CF related or not) and try to capture how I was feeling at that moment in time.

Sound-off Saturday- This day could turn out to be one of the more interesting days on this blog. We all have different views/experiences when it comes to life and how we see the world. I'd like to find two people with different views and have them express those on this blog. It could be anything from healthcare reform to lung transplant vs. no lung transplant to hospital stay vs. no hospital stay to how Mandi and I "saw" our date night. It will have the feel of a "he said, she said" forum. I'm looking forward to it.

Spotlight Sunday- Every Sunday I will highlight the Cystic Fibrosis blog that either touched me the most or just one that I feel people need to read. We have a lot of great bloggers in the CF community and I want to make sure that you guys know about them.

So that's what I'm thinking as of now. What do you guys think? Any suggestions? Are you guys still interested in this blog if I make those changes? Like I've said before, this blog is for you guys and I want you to love it as much as I do. So let the suggestions/comments/questions begin...give it to me. I'm ready!

Wednesday, July 29, 2009

Discharging of a PICC Line

So I'm finally back home and getting adjusted to the "real world". I wanted to take this opportunity to thank all of you for your well wishes and prayers while I was in the hospital. I can't even begin to count all of the emails and comments I received while getting my tune-up. I felt them more than you'll ever know and my only hope is that I can give back to you what you guys have given to me. This blog is meant to be a place to get educated, inspired and up lifted and I hope that is what you are taking from it. I certainly felt all of that coming from you guys and I can't thank you enough. Thank you thank you thank you!!!

I was able to get to the gym but had to take it slower than normal as I know it will be a little bit before I get into the swing of things. I'm also going to adjust the frequency of my workouts as well. I'm going to start next week by putting more of an emphasis on cardio and running. I got sidetracked for a couple of months because of my foot, but now I'm ready to go full steam ahead. Mandi has set some pretty lofty goals for us by October and I fully plan on meeting them. You'll also be seeing some changes to the blog in the coming week in terms of structure and content. As always, I enjoy your feedback and am doing this blog for you, so I need to know what you guys like.

Anyway, here's the last of the in hospital videos. WARNING: If you have a weak stomach do not watch this video. If you want to see something pretty fascinating then I suggest you watch it. I'm still amazed that a long "spaghetti noodle" can dangle in my heart and not present a problem. I now present to you, "The Discharging of a PICC Line":

Tuesday, July 28, 2009

Re-entering the Real World

My little wooly mammoth (you’ve seen the videos, you see the beard) is getting out today! When he’s in, I try to be there as much as possible, and when I’m not there, we webcam frequently, but there’s NOTHING like having him home.


By now I’m sure you can tell that I’m pretty energetic and easily excitable. Now add to that my giddiness (yes, giddiness) when I haven’t seen Ronnie in a while, and you have one bouncy, overwhelming monkey anxious to do everything you haven’t done for a few weeks together RIGHT when you walk in the door.


You may be thinking, “Aw, how sweet”...but for Ronnie, who is generally a little out of sorts when he gets out, not so much. I have learned that after being stuck in a tiny, bland room for so long, Ronnie’s body and brain go into system overload when he’s first out. Loud noises, people all around, screeching girlfriends all overwhelm him. So every time he gets out I have to do my best to suppress my prancing, clapping, wiggling, giggling, blabbering, blubbering ways for the first few days.


I’m happy to do my part because I know Ronnie does his. He tries to snap out of hospital mode a little faster than normal and not let himself go into overload (if you know Ronnie, you know he’s one of the most controlled, patient guys in history - one major point on which we differ - maybe he’ll rub off one of these days, but I doubt it), but there’s only so much he can do.


It normally takes the first day for us to get back into our grove and I’m sure the longer we are together, the better we’ll get at balancing the first few days post hospital. As for today, I’ll enjoy snuggling up and enjoying some quiet time with Ronnie home and save all my craziness for tomorrow!

Monday, July 27, 2009

Readers, I Need Your Help!!! Please Watch Video!

I need your help guys. As my hospital stay comes to an end, I need to know where to go from here. This blog started as a way to hold me accountable while I whip myself back into shape and get my lungs moving again. It has turned into a blog more themed around Cystic Fibrosis and my personal feelings about the disease (which is what was requested of me by the readers about a month ago or so). I need your help again and I'm asking for your input on how to make this blog better. I would also like to make this blog more consistent according to what day it is...something like Mandi Monday and Workout Wednesday or something (just a thought). So let me have it guys, I want this blog to be yours!

Sunday, July 26, 2009

Supplements and Cystic Fibrosis

Interested in taking supplements as a CFer? There are a few things you must remember before starting any supplement which I will go over in the following video. A lot of exciting stuff is going on at RunSickboyRun.com and I have all of you to thank for that! So THANK YOU!!


You can also check out this blog if you are interested in more information about supplements: http://noexcusesnoexcuses.blogspot.com/ or look her up on Twitter @CFResearch

Saturday, July 25, 2009

UPDATE: Running for My Life

I wanted to re post this blog because this last week I was named a finalist for the Nature Made: Fuel Your Greatness contest. I have been put in a great position to spread awareness for Cystic Fibrosis and I look forward to sharing my story with others.

Here's April's post:

**I recently submitted the following post to a contest being held by the company Nature Made. They were looking for stories about overcoming hardship, helping others, or making a difference in the world. I probably don't qualify, but I thought I'd give it a shot**

Two months ago I came to a fork in my life’s road. I had a choice to make: Continue on my current path, watch my lung function plummet, and die; or make a drastic change to take my life back.

Spending fifty days in the hospital can have many affects on a person. For me, it meant a total reevaluation of my life. I knew that I was going to have to make a change, and I knew that it would have to happen immediately.

I was born in 1980 with Cystic Fibrosis, a chronic illness that is the number one genetic killer of children today. When I was diagnosed at 6-months old, my mother was told my life expectancy was 19 years. This meant I shouldn't plan on going to college, I shouldn’t expect to have a wife and kids, and I certainly shouldn’t count on living an “ordinary” life. She took that to only mean one thing: Raise me to live an “extraordinary” life.

I began living life at full capacity. I played sports in high school, obtained a college degree, and devoted much of my time to be a blessing to others. In a sense, I felt I needed to pack 90 years of living into 19. I figured the more life I could squeeze into the time I had, the better.
This meant pouring my time into activities that I found most rewarding. I began working with various non-profit organizations and trying to be a help to those in need. Over the course of a few years, I co-founded a non-profit clothing and jewelry line that donates its proceeds to various children’s charities; established a not-for-profit coffee shop at a local homeless shelter; and worked hard to raise money and spread awareness for the Cystic Fibrosis Foundation.

My life, however, was turned upside down at the start of 2009. I began coughing up blood; enough of it to send me straight to the Intensive Care Unit for a week, and hold me in the hospital for an additional 40 days. My doctors and nurses were dumb-founded with my drastic decline. My lung function was low enough to put me on the transplant list, and I was unable to get enough oxygen into my system without the aid of a machine. My doctors became visibly concerned after I had been in the hospital for nearly fifty days, and had not yet reached my typical lung function. The doctors said there was not much more they could do. I began to realize that I was at an impasse. As a 29-year-old CFer, 10 years past my expiration date, I needed to take my life into my own hands.

From the moment I exited the hospital doors, I was on a mission. I began a strict routine which consisted of revamping my diet, exercise and treatments. I started excising daily, both lifting weights and running. As for my treatments, I committed to being more faithful with doing them than ever, ensuring that I do four, thirty minute treatments a day. And my diet began consisting of six, smaller, more nutritious meals, and adding several supplements and multivitamins to my daily pill schedule. I wanted to put my body in the best position to succeed.

In the 7 weeks since my release, I have logged more than 150 miles on my legs and 60 hours in the gym. It has paid off. I recently had my lung function re-tested and my lungs are now at over 75% capacity. That’s an increase of over 40% in 2 months! I feel better than I have for a long time, and I’m finally getting my life back.

The most incredible part of my transformation, however, was the unexpected opportunity that stemmed from it. I started this journey to help myself. To help myself, so I could help others. What I didn’t foresee, however, was its immediate potential to help others. I began to blog about my journey on a Web site called runsickboyrun.com. And in 2 short months, I have attracted several other CFers and their families, who have commented that through my story, and watching my improvement, they have been motivated to take on my mission as well. They have committed to fighting their decline and prolonging their lives.

Friday, July 24, 2009

I Would Choose Cystic Fibrosis

DISCLAIMER: This is not the opinion of the Cystic Fibrosis community, it is simply one opinion by one CFer.

It's a question I get a lot actually and one I enjoy answering because it often shocks people. So what's the question? If you could be born again, with what you know today, would you choose NOT to have Cystic Fibrosis? Here's one man's answer:


Thursday, July 23, 2009

The Daily Battles of Cystic Fibrosis

Hey guys, thanks for your continued support! I wanted to encourage you to try and watch the videos all the way through. I know I can become long winded and I'll try to make them shorter, but it's tough to squeeze in everything I want to say. I'll work on it though! But again, thanks for watching the videos at all, I just don't want you guys to miss anything! Take a look around the blog and check out all of the new features. I'm trying to make it easier for you guys to spread the word about CF and get it in front of people. I have also added some features along the left hand side of the blog including popular posts, recent comments, and my PFT history. I hope you guys enjoy all of the new stuff and as always, thank you for your interaction, thoughts and prayers.

Wednesday, July 22, 2009

PICC Line Dressing Change

You'll have to excuse my armpit hair hanging out of my shirt (what's going on there!!!???) Here's a video demonstrating a typical PICC line dressing change. Not sure what a PICC line is? Click here.

Tuesday, July 21, 2009

Has It Been One Week in the Hospital Already??!!

One week down and who knows how many to go? Well, I do actually. If everything continues to go as planned, I know that just one more week is very doable. I took my PFT's (wondering what a PFT is? Click here) again today and they slightly derailed my plan...initially. Never thought that I could LOSE so much lung function my first week here!


Remember to check out my PFT video if you haven't already seen it!

Monday, July 20, 2009

This Isn't the Cystic Fibrosis of the 1980's

So you probably wouldn't think that I could draw a connection between the fight against CF and NASCAR...but I can my friend, and I will.


Here are some other blogs you should check out:

"New" Treatment for CFers

So we tried a new treatment the other day (out of pure boredom) and I thought I would share it with you guys. It actually got me to cough quite a bit. Not sure how long the vest would last though with all of the beating it took!

Sunday, July 19, 2009

It's All About The Mucus!!!

So I've been in the Hole now 5 full days and I've got to say that I'm doing pretty good. I was super sleepy all day today, but besides tasting soap with my coffee (didn't do a good job rinsing the mug), I had a great day overall.

I now would like to present to you a video blog about possibly the most important issue to CFers all over the world: Getting that icky sticky ooey gooey green stuff out of our lungs. It's all about the mucus baby!


Saturday, July 18, 2009

Do I Ever Get Sick of CF?

Instead of a video update tonight, I wanted to share this exchange between myself and a parent of a little CFer that I met on Twitter. If you're interested in following my Twitter account you can find me @RunSickboyRun.

Question from Twitter: i have a question, do you ever get sick & tired of having CF & having to do all the treatments?

My Response:
So do I ever get sick of having CF or doing my treatments? Yes and No. Let me explain, I have never nor will ever get sick of HAVING CF. See, I know no different. Since I don't know how the alternative feels, I don't know what I would "want" if it not for CF. To feel normal you may say; to which I would respond, what is normal? See I may have CF, but CF doesn't have me. Plus, who knows the type of person I would be with out. I could be a better person, but then again, I could also be worse. CF has shaped how I look at the world, my life, and my loved ones. I value the time I have on this earth and I don't take anything for granted. I'm actually thankful for CF and what it has done for my life. I know it sounds strange to some, but I constantly say that I am "blessed with CF". Do I have my struggles? Sure, but every one does. I have to learn how to deal with those struggles and navigate my life just like every one else. I love who I am (sounds a little cocky when I say it :)) and I know CF at least plays a minor if not major role in that.

As far as treatments go, of course it can be frustrating. But as with all things in my life, I try to spin it into a positive light. Since I know I have to be sitting many times during the day to do my treatments, I started doing more and more things online in order to compliment my treatment time. I'm a very active person and love to exercise and travel and I know without being healthy I can't do either of those things. So for me it just comes down to a "necessary evil" in my life. If I want to continue to live the lifestyle I'm accustom to, then I'll need to stay faithful with my treatments. It's as simple as that. If you want good teeth, you better brush and floss. If you want good lungs, you better do your treatments. I see it no different than that. I'm willing to make the small sacrifices (time to do treatments) in order that the rest of my day/life is enjoyable. I know too many CFers who sit around there house and complain about how terrible they feel and how much CF sucks. And I say, while you're sitting around feeling sorry for yourself, stick a neb in your mouth and put your vest on. It's all about putting yourself in the best position to succeed. The CFF has put a lot of money into giving us resources to aide us in navigating our lives and putting us into the best position to succeed. Why wouldn't we take FULL advantage of that?

Yes, I am currently in the hospital and will probably be here for a couple of weeks. The hospital is another one of those things that I know I need to do in order to put myself in the best position to live a full, happy and healthy life. If I have to be in here 65 days a year in order to have a rocking 300 days the rest of the year, then I'll take that deal every time. Every year of my life I've had WAY more good days than bad, so why would I have any reason to complain?

I hope that answered your questions and I thank you so much for seeking my opinion. Please don't ever hesitate to email me other questions and thoughts. You may also enjoy some of my older posts on the blog, here are the links: http: //runsickboyrun.blogspot.com/2009/04/cystic-fibrosis-doesnt-define-me.html, http: //runsickboyrun.blogspot.com/2009/04/mothers-manual-to-cystic-fibrosis.html, http://runsickboyrun.blogspot.com/2009/06/attitude-and-perception.html

Do Life,
Ronnie
So what about you? Do you ever just get sick and tired of being "sick and tired"?
And what about your treatments, ever feel like giving them up and just dealing
with the consequences?

Friday, July 17, 2009

Clinical Trials for Cystic Fibrosis

So first thing that I want you guys to notice is that I changed my shirt. Second, thing you should notice is that Mandi hijacked my bed. Finally, I'd love some feedback on this blog post and some answers to my questions at the end. Thanks guys!

Thursday, July 16, 2009

Why I'm a Cystic Fibrosis Awareness Junkie

Let me come right out and answer the question that I know is on everybody's mind; yes, I have the same shirt on from yesterday. Whew, glad I've gotten that out of the way :) In the following video, I discuss why I am so passionate about spreading awareness for CF. Enjoy!

Wednesday, July 15, 2009

They Wouldn't Let Me Film the PICC Placement

It was a pretty uneventful day in the hospital today. They wouldn't let me film my PICC line being placed, but I'm going to have them talk to my "legal team" for the next one that they do. Most adult CFers can probably relate to how I'm feeling today; it feels like I got run over by an 18 wheeler.

If you want to get to the "meat" of the video blog you can skip to :59. I haven't learned how to edit videos yet so you get to see all of it.


I did find the following video on a girl getting a PICC line placed at her bedside if you are interested. Also, if you want more info on a PICC line please click here.

Hospital Stays Are What You Make Them

ENTRY BY MANDI:


It’s hospital time again. I am actually a little excited about Ronnie being in for his tune-up - and no, it’s not because he’s gone for 3 weeks ;-). I never thought I would actually be excited for a hospital stay because I used to hate hospitals. I’ve never be admitted to a hospital, or spent much time in one outside of the quick ER visit (although we all know ER visits are never quick). They always felt cold to me with their white walls and stainless steal. Ronnie had no idea how much I hated hospitals the first time I went to visit him. I drove to Tucson from Phoenix, in a terrible thunderstorm, and when I got there, I was informed that the power was out. Yes, the power was out IN THE HOSPITAL, I didn’t know that could happen. It felt like I was stepping into a horror movie as his brother, Grant, lead me through the dark, deserted halls. It was like one of those scenes in scary movies where you want to yell at the character and say, “What are you doing? You NEVER go into a hospital when the power is out.” But after I spent my first few days with him, I began to feel comfortable, and actually began to enjoy it.


I like our hospital time together for two reasons. First, and this may sound funny to most people reading this, but it’s a special time for us. It’s a rare time where we have nothing to do but enjoy each other’s company (and enjoy it we do; we play games, listen to old John Jay and Rich shows, talk, play catch, watch TV (especially 48 hours, dateline) and the list goes on). I enjoy being there.


Secondly, it helps make CF real to me and helps me understand everything that comes along with it. I’m a worrier. I’ll worry about anything and everything. So for me, it helps if I can see what’s going on. If I weren’t there when he went into ICU, I would have been terrified and worried. If I weren’t there to see him on the BIPAP, I would have thought it was scarier. If I wasn’t there when he coughed up blood, I would have panicked. Being there helps me see that each thing isn’t as scary as my mind makes it. And while it makes all the “hospital things” less scary, it makes CF more real. Ronnie downplays his CF and how much it really affects him. When I’m in the hospital with him, however, I can see and hear things first hand - not his diluted, “it’s no biggy”, version (although I must admit, he sure makes me feel like he can handle anything that gets thrown our way, whether it’s related to CF or not, and I do love that about him). This helps me understand more about how he’s really feeling and just how serious CF can be because it’s easy to forget when I’m with someone that seems “healthy” so much of the time.


All in all, I’m excited for this stay - I want him out and home in two weeks. Lucky for me, I can work from anywhere now, so I’ll be able to be here all week, working during the day and enjoying our time at night.

Tuesday, July 14, 2009

4 Attempts to Start an I.V.- All On Film!

WARNING: If you have a weak stomach, I would suggest not pressing play. These are videos of nurses attempting to start an I.V. on me. Enjoy!









So it took 4 attempts but we finally got one started. I go for my PICC line tomorrow morning. I'm hoping they'll let me film that as it will be even more entertaining.

A Panther at My CF Clinic

Here are some more videos from the clinic:

To understand the next couple of videos I suggest you watch this clip from American Idol from a couple of seasons back. His name is Eccentric and he is a self-professed panther. He's known for a couple of "panther" moves including his best, "the panther swipe". This clip makes me laugh every time.



So for some reason Mandi and I started talking about this guy in clinic (it can get boring in there) and she was having some trouble with the panther swipe. Not that I'm any better, but I think it sounds a little more like the panther himself. We got interrupted by the dietician (how rude :)) but Mandi was able to squeeze in one last swipe.



We were at it again after the dietician left and Mandi really started to get it down. She was becoming a panther right before my eyes. I'm so proud!


That concludes the panther swipe videos and I hope you enjoyed them. I still haven't gotten a bed from the hospital and I'm just waiting for the call. More videos will be coming your way shortly straight from "The Hole".

Monday, July 13, 2009

Pulmonary Function Test with Sickboy

So here I am at clinic doing some PFT's (Pulmonary Function Test). They are trying to determine how many liters of air I can inhale into my lungs (FVC) and then how much of that air I can blow out in the first second (FEV1). They have a certain number predicted for each measure based on my age, height and weight. The last time I did these (about 3 months ago) I was 79%/61% (FVC/FEV). That means that I could get 79% of the air in that they predicted I should be able to get in, and of that air I can blow out 61% of that air in the first second. I completely normal lung can of course get 100%/100% or even above that. So what were my numbers today?


76%/59%!!! So if you're keeping score at home, I decreased a little bit from the last time I did these tests BUT they're using a slightly different system now to keep it more standard across the board at every clinic. So, in actuality, my numbers are the exact same! For the last three months my PFT's haven't declined one bit. I'll still be going into the hospital though as soon as they can get me a bed though. I feel some kind of infection going on and it's getting harder and harder to keep up with life and work and working out. So we're going to nip it in the bud before it gets worse and hopefully it will be a short stay. Wish me luck!

Random Picture of the Day


This is the pool that I have spent about 3 hours a day in for the past 10 days...

Saturday, July 11, 2009

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

Friday, July 10, 2009

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

Thursday, July 9, 2009

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

Wednesday, July 8, 2009

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

Tuesday, July 7, 2009

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

Monday, July 6, 2009

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

Sunday, July 5, 2009

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?