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