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.