The Ten Things That Make My (CF) Life Easier

This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.

16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.

15. Foot Orthotics- The jury is still partially out on how much the orthotics will help me maintain my running schedule, but so far, so good. I haven't had any major pain to speak of since getting them made for me (Thank you POA and Lindsey).

14. Gyms- I've lived in Arizona my whole life and so far it's been 100+ degrees every summer. That's certainly not optimal outside work out weather. Luckily for me the concept of indoor gyms has been around since before I was born and I have taken full advantage of them. I've had a gym membership since I was 16 years old and although I have had several seasons of my life of consistently going and not going, the gym seems to always call me back to her.

13. My Friends- I've been blessed to always find myself with good friends. Friends who are there for me when I'm sick, but don't treat me like I'm sick when I'm healthy. They've always been understanding in that a CF life is atypical in nature but that it's important for that life to be as "normal" as possible. Often times it's completely forgotten that I'm "different" and they're always there to hold me accountable if I'm screwing up.

12. inCourage Vest System- Admittedly, I would choose a hand pound over the vest every day of the week. I got pounded by hand for the first 20 years of my life at least twice a day and I think it helped me immensely. But with that said, the vest is certainly better than a sharp stick in the eye and I'm thankful that I have a very light and portable one. I take it with me on every vacation and it's very easy to slap on while I work or browse the Internet. It's definitely an easy way to get in all of my treatments and I know that it's doing my lungs good!

11. Wintergreen Mints- It's probably just me, but I swear I breath better when I'm sucking on a wintergreen mint. I usually will have one in my mouth before doing PFTs as I think it opens me up a little. I of course have no scientific evidence to base this on, but sometimes believing that something good is happening is just as good as something actually happening.

10. Baby Bottle Cleaner- This is a fairy new piece of equipment in my house but so far it has produced wonders. I'm actually new to the whole nebulizer cleaning thing (didn't start consistently cleaning my nebs until March of this year) and I started with a hot pot at first and then moved on to just throwing them in a pot of boiling water. Now, I throw them in a baby bottle cleaner, add water, push a button, wait six minutes, and then presto bango, CLEAN NEBS! It's amazing I tell you and what I time-saver.

9. Protonix- So I used to throw-up every single morning of my life from about 1994 to 2004. This of course can be a major problem because I would eventually just be puking up stomach acid, which is not friendly on the throat, mouth and teeth. I had the same routine going of feeling sick almost immediately upon entering the shower and then about 5 minutes later I would start throwing up mucus that I had swallowed the previous night while asleep. I realize that much of this was probably psychosomatic and had just become a habit that I had fallen into, but when I started taking Protonix regularly the throwing up became less and less common.

8. Insurance- I know that I have some problems regarding insurance right now, but there is no doubt that I have been blessed with great medical care my whole life which has been paid for by my insurance company. I've really never had a struggle with getting stuff paid for, and with the exception of one time, they've never put the heat on my doctors for all of hospital stays (a direct phone call from me nipped that in the bud).

7. My Blog\The Internet- This blog has provided such a great accountability tool for me and a great way to express my views and opinions on CF and life (which happen to a lot of overlap). The Internet has allowed my to connect with people out there that I otherwise never would of as well as keep up with the happenings of the CF community and research at the click of a button. Have a question about Cystic Fibrosis? It's only a click away and you can actually get a straight answer from somebody who is going through the same kind of things.

6. Invacare 50 psi Compressor- Going from the PARI ProNeb to the Invacare Mobilaire has made a world of difference. I've cut my treatment times down by at least 50% and the medicine just makes me feel different when going in. It feels like it is having a larger impact on my lungs and it one of the best investments into my health that I've ever made.

5. My Love of Sports- Everybody who reads this blog knows that I preach being faithful with your treatments and staying active. Fortunately for me, I've always been 100% with staying active because of my love for sports. Whether it was tee-ball, YMCA basketball, high school football, or church league softball, I've always been involved in some type of sport. In fact, my longest career thus far has been coaching football which I did from 1998-2004. It required that I stay active just so I could keep up with my players!

4. Patience- Here's the deal, not everything in life is going to work out the way you want when you want. Throw a chronic disease on top of that and your life can be completely different than you ever imagined. There are ups and there are downs, but I've been given the gift of patience by God to see me through the down times. I realize that there is a plan and although I may not know exactly what that plan is, I know that He does and He'll accomplish His Will through me. I also know that His Will in my life will be 100% perfect and I was the man that he chose to carry it out. Sometimes it just takes a little patience for His Will to unfold, as it's not my timing, but the Lord's.

3. Mandi- There is no doubt that when God created Mandi, He had me in mind. There is no other way to explain that a woman exists that has everything I've ever hoped for and has opened my eyes to other qualities I never knew I needed. She is the biggest reason why I'm so committed to staying healthy. I want to be around for her for as long is absolutely possible. Not only do I want to be around, but I want to be the boyfriend/husband that she's always dreamed of. She is truly my best friend and a gift sent by the grace of God because I truly don't deserve a woman like her.

2. My Mom- When I thought of qualities that I knew I needed in the eventual mother of my children, many of them came from what I saw in my mom. She has absolute unconditional love and I knew that her family was what she cherished most. She has sacrificed more than I can list in order to provide me the best care possible starting in early childhood by selecting a job because of the benefits. She lived without so her kids could live with. She was incredibly soft and nurturing yet showed tough love when I needed it most (which was often). Most importantly though, she raised me to live my life and to never ever use CF as an excuse. That put me on the path in which I still live today, and for that, I'm eternally grateful.

1. My Faith- Truth be told, God has provided everything to me that has made my (CF) life easier. He chose my mom , He created Mandi, He gave me my talents and character, He provides me resources, and He put specific people in my life at specific times. I know that He also allowed CF into my life for a reason and that He also promises not to give His children things that we can't handle. He has already set my plan in motion and has given me the proper tools to navigate through life. I trust His plan is perfect, and thus far I wouldn't change a thing. Most of all, when I can't do it on my own (which is 99.9% of the time) He's there for me. When I need His strength it's available. When I need His grace, He provides it. When I feel uneasy, He gives me peace that passes all understanding. When I have doubt, He gives me clarity of mind. When I have sorrow, He is there to give me comfort. And when I have death, He will bring me home to spend eternity with Him.

Here's how I look at it: God and I signed a lease on my life when I was born, I don't know when the lease expires, but I do know that I'll go WAY OVER on the miles.

Run/Walk Challenge 2010

Hey everybody!! First, I just wanted to thank you all for the kind birthday wishes both on here and an Facebook. You guys went above and beyond and definitely made me feel special on the 30th b-day.

So, I was contemplating something yesterday and I wanted to get the RSR readers input on it before I "pull the trigger". I was thinking about bringing back the run walk challenge. Some of you from FB may remember the run/walk challenge from when I was in the hospital. It was pretty simple. Everyday that I went for a run or walk, I would document it on Facebook and "challenge" the community to match me. If I ran for 15 minutes, the challenge would be to either run for 15 as well, or walk for thirty. It seemed to catch on with many of you and I believe we had about 20 people taking part of the challenge.

Here's the questions for you all: Would you guys like me to get it started again? What shall we call it? Would you like to match time or distance? Should there be a maximum amount of days per week that the challenge can take place? What do you think the best way to track your individual performance would be?

I think that's all of the questions that I have for now! If you guys can think of anything I'm missing, please bring it to my attention. I look forward to seeing what this can possibly bring about!!!

Top Ten Reasons My Run Stunk Yesterday

Yesterday I decided to go for the last run of my 29th year. I haven't been nearly as consistent with running as I would like to be (I seem to be going on more long walks) and I knew that I would need to set a tone going into my 30th year! I wanted to tell my body who was boss, so instead of my usual warm up walk, I took off running only after about 2 minutes of walking. To challenge myself even further, I decided to do the first half of the run uphill (I'm not sure I really planned on making it to the top, but I knew it would be a nice reward on the way back down).

I spent almost the entire time up the hill trying to talk myself into stopping. I'm serious. On a handful of occasions I actually picked a landmark I would run to and then start walking from there, problem is, I actually never did stop. I guess it's not a problem per say, but it sure felt like it at the time.

I've created the "top ten problems with my run from yesterday" list. I assure you, (and if you've been reading RSR for any amount of time, you know this to be true) I did not create this list to complain. I created this list so all of you would know that you're not alone. I know that you guys attempting to run or exercise are having many of these same problems. I'm hoping that this list can provide some encouragement that you can in fact push through it and accomplish your goals!

Believe me, I wanted to give into my body. But after 2.6 miles of showing it who is boss, I feel AMAZING. I coughed up so much mucus that I won't be surprised if the city fines me to clean it up :) My lungs feel SO wide open and I'm taking deeper breaths today, than I did probably all of last week...just in time for my 30th birthday!

10. My left arch started to really hurt

9. My right ball of my foot was burning

8. I had a stitch in my side that wouldn't go away

7. I kept on burping up BBQ Chicken

6. My legs felt deader than a doorknob

5. I started to get a headache half way through the run

4. It felt like I was pulling for air...

3. ...and the air I was pulling in was really cold and made my lungs tighten up

2. It was really cold outside (so I put on a long sleeve shirt) but...

1. ...when I really got into my run it was too hot (but I couldn't take off said long sleeve shirt cause then it would be too cold)

Does this list look familiar? If it does, you're not alone. Working out is hard for EVERYONE. There isn't one person that I know who doesn't try to talk themselves out of running why they're doing it. Just keep pushing forward! I KNOW you can continue to push farther and farther as long as real effort is there :)

My Top Ten Most Frequented Websites

So I spend a lot of time on-line. Generally I will be working, but during my night treatment, I'm usually able to stop by some of my favorite sites to see what's going on in the real world! Here are my top ten most frequented site during the past six months:

1saleaday.com- I go to this site every night before I go to bed mostly just to check out the sweet deals on there. I have actually even broke down and bought a few things as well! I've gotten some Wii controllers for my little brother for free (just had to pay shipping) plus I got a Margarita machine for the Melin's that was 150 and I picked it up for 25. Check it out, you may just walk away for something.

Yahoo.com- For whatever reason, I've always like the way Yahoo presented there news, sports, finance, etc..I generally try to stop by at least once a day to check on the national/world news and the stock market.

Espn.com- I love me some sports. I generally read through as many box scores as I can during my last treatment (except for hockey) just so I can stay on top of team records and who's doing what.

WildAboutAZCats.com- I may love sports, but I love Wildcat sports even more! My beloved University of Arizona will always have my heart, especially the basketball team. Basketball isn't even my favorite sport (football is), but I've always felt emotionally invested in our Basket Cats. This site talks all things Arizona sports and is a great resource for what is happening with our teams.

Twitter.com- I'm not on my Twitter account as much as I used to be, but I still find it a very valuable resource for keeping up with what is going on in certain communities. I stay up with many in the CF and running communities through Twitter and I also tweet many of my blogs and CF news.

Facebook.com- I've met many of you through my Facebook page and I'm very thankful for this wonderful site. It's a great way to keep up with some in the CF community as well as flip through photos until your heart is content. There are also a bunch of good groups out there that serve the CF community that have pages on Facebook. One of my favorites is CysticLife's fan page :)

Movoto.com- I've been looking for a house lately and this site is simply one of the best for how much information it has on it. You can find out just about anything and everything about a house that peaks your interest and they generally have good pictures of the property as well.

TinyURL.com- I post a lot of links to interesting articles I find onto Facebook and Twitter. Since I usually don't want to take up a ton of space with a long URL, I'll shorten it with this free service. One thing I like about them is there is no account and no signing in necessary.

RunSickboyRun.com- Yeah, guilty. I spend a lot of time on this site. I probably should be spending more, but I have a little project going on right now that is taking quite a bit of my time, focus and energy. I really enjoy writing for this blog though and I really hope that it can serve as a source of education, inspiration and hope to many of you!

CysticLife.org- Believe it or not, this site has been taking up most of my time the last six months. We launched yesterday, so it feels real good to "release the site to the wolves" (that would be you guys)! If you haven't signed up for a profile yet, please do, over 300 people in the CF community did yesterday!!!

What are your favorite sites? Any that I just need to add to my daily list?

Sickboy's 2009 In Review

Here's the best that I can remember 2009....

January- I came back from China on the 17th and promptly went into the emergency room. I had been coughing up cups of blood at a time for 3 days in a row and couldn't walk more than 50 yards without having to take a break. My incredibly low sats and inability to breath without a bi-pap landed me in the ICU.

February- I celebrated my 29th birthday in the Hole. My PFTs were steadily improving, but not at the rate I was accustom to. At that point I would take just about anything though, since I checked in with an FEV1 in the 20's. This is when the light really started to flicker.

March- I got released from the hospital exactly 50 days from the time I had entered. It was my longest trip ever and one that I will never forget. At my release, I had an FEV1 of 51%. I knew I had to make a change. I started RunSickboyRun.com as a way to hold myself accountable while taking on the task of running one full mile.

April- Within 5 weeks out of the hospital I had gotten my FEV1 up to 61%, not quite where I wanted to be, but definitely moving in the right direction. I had still not run a mile and was wondering if running was really the monster that I wanted to take on.

May- This month was full of fundraisers for the Cystic Fibrosis Foundation. I've been very honored to be invited to speak at many events over the last handful of years and hope to continue to do so.

June- June was a big month with the annual family trip to Rocky Point, a trip to Flagstaff with Mandi and also the celebration of one year together with the love of my life. This was also when I realized that other people were starting to benefit from hearing my story and wanted to know more than just how far I was running. The transformation of RSR begins.

July- This was a big month for my "running career". I was seen by a foot doctor who was able to craft me some specially made orthotics to help with the extreme foot pain I was having while running. I also went back into the Hole for a short two week stay, but this time I entered with an FEV1 of 59%, 8% higher than when I left the Hole in March!

August- New structure for RSR is fully implemented with added features like Spotlight Sunday and Top Ten Tuesday! On a personal note, I started a clinical trial for the TOBI vs AZLI study. I was randomized to TOBI, so now I simply get paid to do my treatments :)

September- This was a turning point month for both me personally and this blog. While visiting Mandi's grammy down in Florida, I ran my first mile!!! In fact, I ran 1.5 miles that day!! As for the blog, it got some national exposure when I was named one of five winners for the Nature Made: Fuel Your Greatness competition.

October- We had another good month in the press when a Tucson newspaper ran a story about Mandi and I and our desire to increase my lung function through running. We were also very fortunate that it was picked up nationally by over 20 print and online publications. The daily unique visitors to RunSickboyRun are really starting to swell. I also had an FEV1 of 68%, my best PFTs since 2005!

November- Let's see, what happened in November, oh, that's right, I got engaged!!!! We also had a busy month with CysticLife as we traveled to Dallas, Texas to serve as a source of education and inspiration at the CF Concert Series. Upon my return, I was hospitalized again and saw my FEV1 drop to 41% within my first two weeks in the Hole. We also hit the over 100,000 hits mark on RunSickboyRun!

December- I got out of the Hole just in time for the holiday's with an FEV1 of 60%. It was a great month full of shopping, family and friends. I also had sinus irrigations done for the first time and my house got robbed while I was in the hospital. It was definitely a different kind of a month, but certainly had WAY more good than bad. I've had trouble getting back into rhythm with my workouts but finally got back in the saddle late in the month. 2010 better watch out!!

I'm so thankful for this past year as it has taught me much about myself and what we as a community can achieve if we put our mind to it. I have met so many wonderful people through this blog that I now call my friends and have been able to form relationships that I hope last a life-time. This has undoubtedly been one of the best years of my life and many of you are to thank for that. Here's the scary part though, it's only going to get better in 2010!!!

Why Runners Like To Feel the Burn

A good friend e-mailed this NPR clip to me today about running that I wanted to pass along to you guys. It's called "Why Runners Like To Feel the Burn" and it is very interesting. If you have some time today, I would highly encourage you to take the time to listen to it.

What compels hundreds of thousands of runners to compete in marathons every year? Ira Flatow and guests discuss running research — from how humans are adapted specifically for long-distance running to why working up a sweat might be good for the brain, as well as the body.

Guests:

Daniel E. Lieberman, professor, Department of Anthropology, Harvard University, Cambridge, Mass.

John Ratey, M.D., author, Spark: The Revolutionary New Science of Exercise and the Brain, clinical associate professor of psychiatry, Harvard Medical School, Cambridge, Mass.

Link to audio: http://www.npr.org/templates/story/story.php?storyId=114319707&sc=17&f=1128

I also wanted to post this cartoon that Mandi forwarded me today. Now, keep in mind that she NEVER forwards anything, but she said she had to because she laughed out loud. Needless to say, I laughed out loud also.

The Truth About Dinosaurs

The First Ever Post on RSR

**By the way, today is Mandi's birthday, so I sure wouldn't mind if you gave her some love in the comment section**

Some of you may remember this post from March 12th, 2009, but many of you will be reading it for the first time. I thought it could be cool to take a quick trip down memory lane. If you're a newer reader of this blog, I encourage you to take the time to read some of these older posts. It's been an amazing journey thus far, together we've raised my lung function from 65/51 (FVC/FEV1) to 80/67 and I can't thank you guys enough for that. Sure, the structure of the blog has changed over the past couple of months, but the message is the same: We DO have more control over our lung function than we often give ourselves credit for!

The First Cut is the Deepest

6am: Alarm goes off and I'm already thinking that this was a bad idea. I slept ok but every time I woke up during the night, I stayed awake for at least 5 minutes listening to the "submarine" that provides me oxygen. I hope I get use to this concentrator ASAP or the docs are going to have to come up with a new plan of action. Anyway, I role out of bed and I have a headache, I'm coughing up a bunch of mucus, and my right lung is killing me. Do I just scrap this whole thing and crawl back into bed? I thought about it. I roll downstairs to have a little bit of tylenol coffee to get rid of my headache and lace up my shoes. I'm ready for this. I start down the street and already I'm coughing my brains out. There is a trail of mucus following me marking every step that I have taken. I'm winded. I'm tired. I'm trying not to throw up. I am however dry heaving. I wasn't sure how far I was going to be able to go, but I decided to push through all the crap and just do it (that should be a slogan).Anyway, I'm in good spirits and I'm ready for this challenge. I just hope that walking my dog first thing in the morning gets easier.

Total Distance: 1.6 miles

9:30am: I was on my way to the gym when I remembered that I needed an oil change. So I went to the Honda dealership to drop off my car and from there do a run/WALK. I put walk in CAPS because I do mostly that, walk. I'm guessing that the furthest distance that I covered in a straight shot running was 100 yards. After about 1.5 miles of the run/walk my legs started to feel really dead and my back started to hurt. So, because it is the first day, I peeled back a little and walked the rest of the way back to the dealership. I will say though, my lungs still hurt pretty bad, but they felt better than this morning. I'm moving the right direction!

Total Distance: 2.3 miles

12:00pm: So I finally made it to the gym to prove to my mind that my body is weak. Let me tell you, I proved a good point. I was lifting lighter weight than when I was in 7th grade. I worked out my chest and back with various weight exercises. Everybody in the gym probably thought I was super cold because I was shaking so much trying to do the bench press. I've got a lot of work to do. Current Weight: 195 lbs.

6:00pm: Mandi and I decided to give it a go at tennis tonight. We arrived at the courts with rackets and tennis balls in hand, but there was a problem, no courts available. We made the best of it and hit balls back and forth on the basketball court. Luckily, Mandi's aim isn't the best, so I got a pretty good workout just chasing the balls around.I can tell you one thing: I cannot wait to get to bed.

Total Distance Run/Walk: 3.9 miles

I hope that walk down memory lane was as good for you as it was for me! This blog may have started as something to hold me accountable on my journey of taking my lungs back, but it became something more than that these last couple of months. I have met so many awesome people through this blog that I probably would have never met had this not started. I really think community is key when talking about Cystic Fibrosis and I'm so glad that we have a place to share our "playbooks".

Spread the CF Wealth (of Awareness)

First, I'd like to start with a little bit of blog updates and thingamajigs....

1. I would ask that you take a look at the new comment section under the post today, try it out and tell me what you think. I'm trying to spice things up a bit on this blog and I figure I would start with the comments section. Supposedly this platform allows you to connect with your profiles on other social networks (Facebook, Twitter, etc) and gives options not available on the standard blogspot comment section. If it stinks, it stinks; if it's good, it's good. So, please use it, comment and tell me what's up.

2. You'll notice that below each post are little icons of almost every social network on the planet. If you are familiar with them, I ask that you use them to promote anything Cystic Fibrosis. Whether the content is another Website, blog, article or here on RSR, I really think those of us in the CF community need to take advantage of the ability to "spread the word". The more people that are aware of what Cystic Fibrosis is the better and it increases the chance of getting support for our mission- a cure. If you are unaware of what exactly those icons mean, just click one and investigate a little- I promise it won't bite.

3. I just wanted to give all of you a sincere THANK YOU for reading this blog and your continued support. I promise that we are closer than ever to whipping this CF thing in the butt...I'm not even sure if that was used in the right context, but I know you guys are with me!

Without further ado, my post for Workout Wednesday...

Running has been going better than I could have ever expected. Now, EVERY run is at least 30 minutes long. In fact, my last run was 2.9 miles long which crushes my previous long distance of 2.25 miles. It took me just under 45 minutes (so if you're doing the math at home, I'm still incredibly slow) but I never ever stopped moving forward, and for me, that's what counts. About half way through the run my legs literally went numb and probably helped me push all the way through the finish line. For me, getting past the leg pain is half the battle, so when they go numb, I figure I'm ahead of the game. My numb legs and feet also "allowed" me to trip on a slightly raised sidewalk (don't you hate that?) and almost fall flat on my face, but that's another story for another time. Speaking of another story for another time, here's my teaser for my Friday Firsts post: For the first time ever, I was actually asked to stop running (in the middle of my run) by a complete stranger because I looked so "flush" as she put it. Stay tuned!

On a sad personal note: I was informed today that my grandpa in Iowa has been given about 3 weeks to live due to very aggressive and late-stage pancreatic cancer. I ask you to keep the family in your thoughts and prayers and that he will not experience much pain. Love you grandpa.

Check it out, hot off the press!!!!

Disease becomes a motivator

Tucsonan helping others while facing loss of insurance

By Stephanie Innes

ARIZONA DAILY STAR

Tucson, Arizona | Published: 10.04.2009

Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.

The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Singer Gavin DeGraw's "Free" plays on his iPod. Sharpe hates to run; he absolutely loathes it. But he forces himself to do it at least three times a week.

Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There's no cure, and Sharpe already has lost several friends to the disease.

He's garnered national attention recently, having won a contest sponsored by a vitamin company. The contest, titled "Fuel Your Greatness," asked entrants for inspiring stories. He wrote about his running.

A 50-day hospital stay earlier this year inspired the running fixation and a blog titled "RunSickBoyRun," which now gets an average 300 unique viewers per day from all around the world.

And a local executive whose child has cystic fibrosis is helping fund Sharpe's latest project, a soon-to-launch Web site that he hopes will be international in scope. CysticLife is designed to be a hub for his "cystas" and "fibros," and their friends, loved ones and the public.

But not everything is going well for Sharpe — he's set to lose his health insurance.

His mother, Christine Hiemstra, works in accounting for the University of Arizona's Campus Agricultural Center, and all his life Sharpe has been on her health policy. He's been allowed to stay on the insurance into adulthood because state coverage has always been extended to employees' dependent adult disabled offspring over the age of 23.

But a bill signed into law by Gov. Jan Brewer last month eliminates coverage for Sharpe and 360 other disabled adult offspring of state employees. Also cut from coverage are domestic partners of state employees and employees' offspring ages 23 and 24 who are full-time students. Altogether, about 2,200 people will be affected, Arizona Department of Administration data show.

Though the law took effect Thursday, those slated to lose their insurance are not expected to be cut from their plans until Nov. 24 at the earliest, state officials say. The legislation is still under legal review.

"I have faith," Hiemstra said. "I just don't believe the state will look at all these disabled adults and kick them to the curb."

Sharpe shares his mother's positive attitude. He credits it with keeping him healthy in the face of an illness that is the most common fatal genetically transmitted disease among North America's white population.

"I kind of signed a lease with God on my life. At some point, I'm going to have to return it to him. But I'm going to go way over on the miles," Sharpe said. "We do have more control over our CF than we hold ourselves accountable for. My lung function has gone up 10 percent since I started my running blog."

When Sharpe was born in 1980, the life expectancy for a cystic fibrosis baby was 20.

Dr. Mark Brown, a professor of clinical pediatrics at the University of Arizona who has been treating cystic fibrosis patients since 1983, said the UA's Cystic Fibrosis Center has a patient who is 69.

While he stressed that's rare, Brown also noted that survival rates have been steadily increasing due to better treatments and improved drugs.

The development of artificial enzymes that help those with cystic fibrosis to digest their food was a huge breakthrough during the 1960s. Before that, many children died of malnutrition, Brown said.

Sharpe takes nine pills containing artificial enzymes before each meal.

Because of digestive troubles, most people with cystic fibrosis are thin. And many, including Sharpe, have raspy voices from coughing and from some of their inhaled medications.

Sharpe is not thin. He stands nearly 5 feet 9 inches and weighs 185 pounds. Growing up, he played football, soccer, basketball and baseball.

His lung function isn't as strong as it was when he was in high school, and he now spends more time in the hospital than in the past. His average now is 90 days per year. He never gave up athletics, but after his illness earlier this year he decided to make a firmer commitment to fitness.

Each morning, he walks and coughs to remove what he calls the "junky stuff" from his lungs.

"If I eat too late or shower too early, I'll throw everything up," he said last week during a walk through his parents' midtown neighborhood with his dog, Jezzabel, and his girlfriend, Mandi Melin, 22. "My food digests really slow. Throughout the night I'll be coughing and swallowing mucus without even knowing."

He follows the walk with a shower, where he coughs more.

"The shower sounds like a war zone," Melin said.

After his shower, he begins the first of his four daily treatments. Each lasts 45 to 75 minutes. He puts on a vest with built-in equipment and that sounds like a washing machine and pounds his chest to help shake mucus from his lungs. He also uses a nebulizer, which delivers medications directly to the lungs. Before Sharpe got the vest, Hiemstra had to pound her son by hand — twice a day for 20 years.

During and between treatments, Sharpe is on his computer. He sends out short messages by Twitter, writes blog entries and works on the launch of CysticLife. Its funding came from local executive Court Gettel, whose son, Walker, has the disease. Gettel and Sharpe met at a fundraising gala last year.

"Ronnie has a lot of passion for life," Gettel said.

Melin said Sharpe is often on the phone with parents of newly diagnosed children, and also with teenagers who often want to speak with someone other than their friends or parents. Sharpe is a frequent presence at Cystic Fibrosis Foundation events in both Tucson and in Phoenix, where Melin lives.

RunSickBoyRun has sparked emotional debate by posters on issues such as whether people with the disease should be working full-time jobs, and what parents should do about having more children if they are both carriers of the cystic fibrosis gene, which means there's a 25 percent chance their baby will be born with the disease.

Melin graduated from Syracuse University in December and now works full time for CysticLife. She also helps with the RunSickBoyRun blog and is a constant by Sharpe's side.

"Mandi is my rock," Sharpe wrote in a recent blog. "I had my mom to lean on for so many years (and still do) that I knew that I would need a strong and confident woman in my life in order to make a relationship work long term. . . . Mandi does the perfect job of kicking me in the butt, but then bringing me ice."

The risks of exercising with cystic fibrosis include low oxygen levels and ruptured blood vessels in the lungs, which is extremely dangerous. That's why while Sharpe runs, Melin runs alongside, constantly checking phlegm he spits out for spots of blood.

Melin also sets Sharpe's running goals. He'd like to run one of the cystic fibrosis organized walks, which are 5 kilometers. But his runs are often difficult. Last week, he said his phlegm felt like Super Glue, and he couldn't speak for several minutes after he was finished.

Brown, the UMC doctor, said exercise is good not only for clearing out the mucus but also because the big breaths required for exercise help keep the lungs open. And exercise, among other things, releases hormones that promote the development of muscle tissue, so the benefits outweigh the risks, Brown said.

While Sharpe and his mother have faith that the insurance problem will sort itself out, Melin is more concerned. One of his recent hospital stays ran up a bill of nearly $400,000. He's had numerous surgeries, and his medications alone are thousands of dollars per month.

Sharpe has applied for the state's form of Medicaid, the Arizona Health Care Cost Containment System, in the past. Though he doesn't have an income, he has too much money in the bank to qualify, he said.

Melin said the solution may be marrying Sharpe and finding a job with good enough benefits to cover them both.

For now, Sharpe and Melin remain hopeful that a legal review of the new legislation will rule in Sharpe's favor. In the meantime, Sharpe is focusing on increasing awareness of a disease he believes will be cured one day.

And he continues to run.

"When you are feeling sick, that's when you want to push harder," he said. "For most chronic illnesses, a lot of it is your mentality. If you sit on a couch all day and do nothing but feeling sorry for yourself, you are going to die."

Contact Star reporter Stephanie Innes at 573-4134 or sinnes@azstarnet.com.

A RunSickboyRun News Story Teaser

The full story is set to launch tomorrow, but I figured I'd have you guys read the teaser...

Patient launches worldwide web hub for "cystas" and "fibros"

Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.

The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Gavin DeGraw’s “Free” plays on his iPod. He hates to run, absolutely loathes it. But he forces himself to do it at least three times a week.

Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There’s no cure and Sharpe already has lost several friends to the disease.

He’s garnered national attention recently, having won a contest sponsored by a vitamin company titled, “Fuel Your Greatness,” that asked entrants for inspiring stories. He wrote about his running. A 50-day hospital stay earlier this year inspired the running fixation and a blog called “RunSickBoyRun,” which now gets an average 300 unique viewers per day from all around the world.

To read the rest of the article, please click here

RunSickboyRun Featured on NatureMade.com!!!!!

Some of you may remember me entering the "Fuel Your Greatness" contest a hand full of months ago. Good news, I won!!! It was a GREAT opportunity to spread more awareness for Cystic Fibrosis. They interviewed me by phone and I provided them some pictures for the online photo documentary. I encourage you to check it out over at NatureMade.com.

If you didn't get a chance to read the winning essay, you can check it out here.

Looks Like I Need to Change My Banner

I'll write up a complete blog on this soon, but here's what you need to know:

I RAN 1.5 MILES STRAIGHT TODAY!!!!!!!!!!!!!!!!!

Great, so what do I do now?

Here's Where We are with the Whole Running Thing

So here's the deal with my workouts. I've always been a believer in switching my lifting routine up about every 6 to 8 weeks so that my body doesn't get used to certain lifts. Many muscle-heads and personal trainers recommend this also, so I figure I'll listen to the experts on this one. Another person that I trust with my health and workout routine is Mandi and she suggested that we switch things up again completely. A big reason for this is to concentrate even more on my lungs and less on my amazing (I'm currently making a fart noise with my mouth) physique. So this change was going to call for more consistent and farther runs as well as other forms of cardio. Before I went into the hospital I was lifting 6 days a week, walking Jezzabel everyday, and running every other day (when my foot had no pain). But I was having some well documented problems.

If you've been following the blog for a while, you know that the only problem that I encountered with lifting was on shoulder day, but running increasingly became more and more of a problem. After (or during) runs, I wouldn't be able to put any weight on my foot with out excruciating pain. I had to completely stop running for about the last 6 weeks before my hospital stay. Right before checking into the hospital, I was able to get specially made orthotics for my feet that hopefully will solve that problem. You can check out my days at the foot doctor and diagnosis here and here. I've used them for the runs while in the hospital and the few runs I've gone on while out. So far so good! What follows is my new schedule that I will follow to hopefully be running that first mile in no time:

Monday: Chest and Tricep, Dog Walk

Tuesday: New Running Routine (click here for details)

Wednesday: Legs and Shoulders, Dog Walk

Thursday: New Running Routine

Friday: Back and Bicep, Dog Walk

Saturday: New Running Routine plus possible additional cardio (ie Hiking)

Sunday: REST

I already did week one the the new running plan and handled it very well. Besides throwing up my lunch one day after the run, there was no other "hiccups". I'm looking forward to really increasing my mileage and one day maybe, just maybe, being able to call myself a runner. This is Run, Sickboy, Run after all!

My total mileage will be a little harder to calculate since the new plans calls for running for a certain amount of time and not a certain distance. As soon as it gets to a point where it makes sense to keep track of distance I will do so. And of course, when I run that first whole mile, you'll know about it.

Here is a picture of me my first day out of the hospital. I'm up to 192lbs (from 184lbs) and you can certainly notice a difference. The problem with gaining muscle rather quickly is that I lose it rather quickly as well. You can compare this picture to how I looked before I went into the hospital by clicking here.

That's all I got for this first edition of Workout Wednesday. As always, please don't hesitate to ask any questions or leave comments. I'm going to be busting my butt everyday to try and improve my lung health and PFT numbers (if you want to see a PFT on film, click here). I really appreciate you guys coming along for the ride!

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!

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