Clinical Trials, The Mine and My Competitive Spirit

Here's what I'm thankful for this Thursday:

- I'm so thankful for the availability of clinical trials for those of us with Cystic Fibrosis. I actually just started my first one in a long time and so far so good. Granted, I'm on a med (TOBI) that I've been doing for about 10 years now, but it's a head-to-head trial versus AZLI (Aztreonam). I had a 50/50 shot of being given either drug and I was chosen to do TOBI. Mandi asked if I was disappointed that I didn't get the wonder drug AZLI (it's been shown to increase lung function by 10-12% in a month) but my response was a simple one, "I just hope that someone with lower lung function is given the opportunity to take that drug".

- I'm so thankful for The Mine. The Mine is a bible study that takes place every Tuesday night at my church (it's almost like a church service as there is 500 people that attend) that really digs into the bible. We go verse by verse and really dissect each passage. Last night (Tuesday) was all about how important it is to have fellowship with other Christians who encourage each other to walk with God daily and strive for a life modeled by Jesus while He was here on Earth. I've been blessed to be surrounded by a great group of friends that do just that!

- I'm thankful for my competitive spirit. Although this quality has gotten me in trouble once or twice (ie church league softball and dodge ball), I'm so thankful that it is still in me today. Being in constant competition with myself is often the drive that keeps me going everyday as I am always trying to be better than I was the day before. It's what got me through my run yesterday even with a belly full of Dunkin Donuts coffee and lungs that felt they were swimming with mucus. I just refuse to lose...even to yesterday's version of Ronnie.

"Don't ever strive be better than someone else, just always strive to be better than you." ~Ronnie

Why Push Through the Tough Times?

Today, I wanted to talk about when to push through the tough times and the importance of making up missed workouts. I know better than anybody the ease at which we can make up excuses and continue to push-off exercise to the point that we just forget about it completely. It's vital to our health and our lives to stay ahead of Cystic Fibrosis and continue to "outwork" it everyday of our lives.

To see my new running routine click here.

To see my before pictures click here and here.

To see my way before and after pics, click here.

Asher's First Vest Treatment

I wanted to share this video of little fibro Asher doing his very first vest treatment. I've hung out with his parents Jeremy and Rachel and I'm very impressed with their great attitude and commitment to making sure Asher is the healthiest kid around. You can check out their blog at www.asherolimb.com plus follow them on Twitter at @RachelOlimb, @AsherOlimb, and @AbelDanger. Enjoy, this is a VERY cute video!

The Vest is here from zeropointD on Vimeo.

Proud and Looking to Brag

This Mandi Monday is actually all about Ronnie, but Ronnie Monday just doesn't sound as good. I write today to brag on Ronnie's behalf. I am SUPER proud of Ronnie's running this week, so I'll tell you a little bit about it, from my point of view.

I must say, I've seen Ronnie push himself out of his comfort zone quite a bit. Ronnie, if you haven't learned already, is very willing and eager to give anything a go at least once and gives everything his all. When we work out, he works up a pretty good sweat, gets pretty winded, often dry heaves or even throws up. I've seen him work out in the hospital, with his PICC line dangling, and seen him climb the Great Wall with a terrible cold, high fever, gasping for breath. But even after seeing him push himself through many other things, I have never been as proud as I was this last week.

This week we upped our cardio to running 4 minutes, walking 3 (x4). Tuesday was our first day for this time/distance. Ronnie seemed a little apprehensive about the shift from walking more than running, to running more than walking. But never-the-less, he eagerly laced up his now beat-up looking Brooks, and was ready to go. I tried to reassure him that he was fully capable of running 4 minutes and we were off.

About 1/4 of the way into it I could tell he wasn't feeling great. When we finished up the first running segment, his breath got a little strained. He put his hands on his hips. You could tell he had a little stitch in his side. He coughed a few times until it sounded like he was going to toss his cookies, but held it down. He was hurting. He stayed focused. He glanced at his watch (he pays attention to our time), gasped for a few last breaths, coughed once, and started running again. Each time our 4 minutes of running were up, he'd be more winded, coughing a littler harder and would take a little longer to catch his breath. But each time, he'd glance at his watch and when it was time, he'd start running again. I was impressed.

And when I thought I couldn't be more impressed, he amazed me. The last segment of the run, he ran longer than he had to, by almost a minute. Not only did he push himself to do what hurt, but he had pushed himself to do more than he had to. That I find truly admirable.

Here's the greatest part: he may not feel it this week or next year, but one day it will pay off that he has always done a little more than he had to. He will undoubtedly be able to run faster, run farther, and ultimately live longer because he always went "the extra mile" (terrible pun intended)--for that, I am proud!!

(I thought I'd throw in a video of Ronnie and me at the Great Wall for your enjoyment!)

So What's the Truth in Health Care Reform?

I know many of you are following this health care reform battle daily and trying to figure out what would be the best for you and your family. For Sound-off Saturday I've decided to provide 3 points of view (Click on titles to link to original article) that I've read over the last week and see if any of you out there have any insight onto what's actually going on with this whole mess. The first article is President Obama's bullet points on what reform will do. The second is from a House Republican Leader on what the reform will actually do. The third article is debunking the myths that the GOP is putting out there about health care reform.

I know one thing for sure: when it comes to politics, it's very hard to separate the truth from lies. So guys, tell me what you think!

Facts About Health Care Reform

Why we need reform:

Over 46 million Americans have no medical coverage at all; millions more are under-insured or fear losing coverage. If we continue on our current path health care costs will continue to soar and within the next decade one out of every five dollars will be spent on health care.

This is unacceptable, the system is broken and we cannot postpone meaningful reform any longer.

What's in it for you:

Your choice of doctors and plans will be protected; those that are happy with their current coverage can keep it or choose a new plan--including a public option.

Additionally, everyone will benefit from eight protections that will ensure stability and security for families across the country:

1. Coverage Regardless of Pre-Existing Conditions

Insurance companies will be prohibited from refusing coverage because of medical history.

2. An End to Exorbitant Out-of-Pocket Expenses, Deductible and Co-Pays

Insurance companies will have to abide by yearly caps on how much they can charge for out-of-pocket expenses.

3. Full Coverage for Preventive Care

Insurance companies must fully cover--without charge--regular checkups and tests that help prevent illness, including mammograms or eye and foot exams for diabetics.

4. No Dropped Coverage for the Seriously Ill

Insurance companies will be prohibited from dropping or lessening coverage for people who become seriously ill.

5. No Gender Discrimination

Insurance companies will be prohibited from charging people more because of their gender.

6. No Annual or Lifetime Caps on Coverage

Insurance companies will be prevented from placing annual or lifetime caps on the coverage people receive.

7. Extended Coverage for Young Adults

Children will be eligible for family coverage through the age of 26.

8. Guaranteed Insurance Renewal

Insurance companies will be required to renew a policy as long as the policyholder pays their premium in full. Insurance companies won't be allowed to refuse renewal if someone becomes sick.

"This isn't about politics. This is about people's lives.
This is about people's businesses. This is about our future."

-President Barack Obama

Top 10 Facts About House Democrats' Health Care "Reform" Legislation Democrats' Bill Would Increase Taxes, Raise Health Care Costs & Ration Care; House Republicans Are Proposing Better Solutions Washington, Jun 10 - House Democrats have begun rolling out their long-awaited health care “reform” legislation, and it turns out there’s not much “reform” to it after all. Instead, it would increase taxes, raise health care costs, ration care, and leave key medical decisions to government bureaucrats, rather than patients and their doctors – a proposal that House Republican Leader John Boehner (R-OH) warned in an op-ed published on Townhall.com could cause more than 100 million Americans to “be forced out of their current health care plan and onto the government rolls.” With a debate on health care reform slated to begin in Congress, here are the top 10 facts about the House Democrats’ health care proposal: 1. A Government Takeover of Health Care. The House Democrats’ plan will create a new government-run program, will make health care more expensive, limit treatments and ration care, and put bureaucrats in charge of medical decisions rather than patients and doctors. Translation: higher costs, lower quality, and fewer choices for patients. 2. Forcing More than 100 Million Out of their Health Care. The House Democrats’ plan will force more than 100 million Americans out of their current health care plan and onto the government rolls. A Lewin Group study confirms that under a new government-run health plan millions will lose their current health care coverage. 3. Rationing Health Care Treatments. The House Democrats’ plan establishes an “advisory committee” that will put bureaucrats and politicians in charge of deciding patient treatments and cures. Translation: The government will make health care treatment decisions rather than doctors and patients. 4. A New Mandate on Individuals. The House Democrats’ plan mandates that every American buy health insurance or pay a hefty tax to Washington. This would force more Americans into government-run system that will make health care more expensive, ration care, and put bureaucrats in charge of medical decisions. 5. A New Mandate on Employers. The House Democrats’ plan would impose employer mandates and cost jobs by requiring some employers – especially small businesses – to pay a new tax to Washington. The plan would also slap employers that are unable to offer coverage the government deems adequate with another new tax to Washington. These two new taxes will make it more difficult than ever for small business owners to reinvest in their businesses and create and retain good paying jobs. 6. Harming Small Businesses. The House Democrats’ plan doesn’t yet define “small businesses,” which is troubling news for millions of Americans who depend on these engines of economic growth. One Democratic draft plan revealed to date only provides assistance to ease employer mandates for small businesses with an average of 27 or fewer employees. This leaves a huge number of small businesses to deal with the onerous and expensive mandates of the Democrats’ government defined health benefit plan (“small businesses” are traditionally defined as employing less than 500 people). 7. Expanding Entitlements. The House Democrats’ plan expands the Medicare and Medicaid programs without reform, ignoring the pending insolvency of programs that millions of seniors and families rely upon. These policies will result in benefit cuts and premium increases for many Americans who depend on these programs. 8. Unfunded Mandates on States. The House Democrats’ plan creates new unfunded mandates for already cash-strapped states by expanding Medicaid, forcing both the federal government and states to pay more to finance this entitlement expansion. This will leave states no choice but to raise taxes or reduce services for citizens of those states. 9. How Many Taxes Will Democrats Raise? The House Democrats’ plan expands benefits and includes massive new subsidies and government-dictated benefits, but it doesn’t identify any significant savings to help pay for the new scheme, nor does it acknowledge the massive new costs it will impose on individuals, employers, and states. In the past, Democrats promised a series of new tax hikes to pay for their plan. How many will there be? When do Democrats plan to reveal them? 10. Shifts Massive New Costs onto Taxpayers. The House Democrats’ plan represents a bait-and-switch that will make health care more expensive and hit the middle class particularly hard with higher taxes, rationed care, and new health costs. As millions of middle-class families are struggling to make ends meet while making responsible choices, this plan forces those that make responsible decisions to foot the bill for those who don’t. House Republicans believe there is a better way, and led by Rep. Roy Blunt (R-MO) and his Health Care Reform Solutions Group, they are crafting better solutions to expand access to affordable, quality care regardless of pre-existing conditions; protect Americans from being forced into a government-run plan, making certain that medical decisions are made by patients and their doctors, not Washington bureaucrats; and let Americans who like their health care coverage keep it, while giving all Americans the freedom to choose the plan that best meets their needs. Will Democrats finally agree to work with Republicans on a plan to expand access to high-quality, affordable health care without raising taxes and rationing care? Or will they barrel ahead with their government-run plan? Middle-class families and small businesses are awaiting the answer. 8 COMMON MYTHS ABOUT HEALTH INSURANCE REFORM 1. It's a myth that reform will mean a "government takeover" of health care or lead to "rationing." To the contrary, reform will forbid many forms of rationing that are currently being used by insurance companies. 2. It's a myth that reform will bust the budget. To the contrary, the President has identified ways to pay for the vast majority of the up-front costs by cutting waste, fraud, and abuse within existing government health programs; ending big subsidies to insurance companies; and increasing efficiency with such steps as coordinating care and streamlining paperwork. In the long term, reform can help bring down costs that will otherwise lead to a fiscal crisis. 3. It's a malicious myth that reform would encourage or even require euthanasia for seniors. For seniors who want to consult with their family and physicians about end-of life decisions, reform will help to cover these voluntary, private consultations for those who want help with these personal and difficult family decisions. 4. It's a myth that health insurance reform will affect veterans' access to the care they get now. To the contrary, the President's budget significantly expands coverage under the VA, extending care to 500,000 more veterans who were previously excluded. The VA Healthcare system will continue to be available for all eligible veterans. 5. It's a myth that health insurance reform will hurt small businesses. To the contrary, reform will ease the burdens on small businesses, provide tax credits to help them pay for employee coverage and help level the playing field with big firms who pay much less to cover their employees on average. 6. It's myth that Health Insurance Reform would be financed by cutting Medicare benefits. To the contrary, reform will improve the long-term financial health of Medicare, ensure better coordination, eliminate waste and unnecessary subsidies to insurance companies, and help to close the Medicare "doughnut" hole to make prescription drugs more affordable for seniors. 7. It's myth that reform will force you out of your current insurance plan or force you to change doctors. To the contrary, reform will expand your choices, not eliminate them. 8. It is an absurd myth that government will be in charge of your bank accounts. Health insurance reform will simplify administration, making it easier and more convenient for you to pay bills in a method that you choose. Just like paying a phone bill or a utility bill, you can pay by traditional check, or by a direct electronic payment. And forms will be standardized so they will be easier to understand. The choice is up to you - and the same rules of privacy will apply as they do for all other electronic payments that people make.

The First Time I Died -Part 1

I was a high school senior. It was the first football game of the year. I was fortunate to be my team’s starting tailback. After a pretty good half (65 yards rushing and two sacks as a DE), my muscles started cramping up. I always had problems with cramping while playing sports. Staying hydrated was always a major focus of mine. There were two times before this incident when the cramps got the best of me. Once, the summer after 8^th grade, I was rushed to the hospital by ambulance because of severe muscle cramps and the inability to hold down any liquid (I was outside working on a house renovation in the heat of summer without any water. I know. How brilliant of me.) And also when I was visiting my father over one summer in San Antonio, I started severely cramping after a game of flag football. I was rushed by ambulance again to the hospital and luckily my dad (a military hospital administrator) was able to get his friend (a doctor) to meet me at the hospital doors and begin treating me right away. After blood and urine tests (in which my urine looked like Root Beer) the doctor said that he felt I was just minutes away from some of my organs shutting down. Both times was quite a shock to the system and even more of a shock to my parents.

Well, back to my senior year. This episode of cramps was like nothing I had ever felt before. We’re talking here about muscles cramping in areas that I had no idea contained muscles. They started during the game, but I was able to stretch them out. By the time half time hit, they were all over my body. There I was on the sideline, lying on the ground with trainers surrounding me trying to stretch what seemed like every part of my body. We soon realized that they were not going to stop. So now the question was, do we call an ambulance or do we just go to the ER? We decided to just go to the ER. Bad decision. My uncle carried me to the awaiting minivan and off we went. The whole time to the hospital he was rubbing and stretching all of my leg muscles. To try and describe the pain would do the pain an injustice. All I can say is, picture a “Charlie horse”. Now picture a bunch of Charlie horses all over your body. When I (or my uncle) would try to get rid of a cramp in my quad, it would move to my hamstring. Work on my cramping bicep and it would move to by tricep. I’m telling you, every muscle in my body was cramping in differing strengths for different lengths of time. There was a time during this episode that my eyelids cramped open. I couldn’t close my eyes. Never knew that could happen.

We arrived to the ER and my uncle ran in and got a gurney and a staff member. This is when we realized it was a mistake to not call an ambulance. In a move I can still not explain, they determined that I was not an emergency. There I was sitting, or more accurately laying, in the emergency room with every muscle in my body cramping. My mom and my uncle were diligently rubbing the various parts of my body that were affected as I was writhing in pain. We told everybody working there the situation. I had Cystic Fibrosis and this had happened twice before but not as bad. I pleaded with them to please just get me started on IV fluids. At one point, I banged on the glass partition and said, “You really don’t get it, I need help right now!” I felt helpless. Over the years I have learned to gage when I’m really in trouble and when it was something I could work through. I knew I was in trouble. I needed to be seen and I needed to be seen right away. Nothing seemed to get their attention.

That all changed when I started to hyperventilate and get tunnel vision. I had always heard about tunnel vision but I had never experienced it. I remember trying to catch my breath and just not being able to. I was looking at the ceiling and a dark circle seemed to be closing in around me. It got to the point that I could only see probably a foot or two of the ceiling. It was if I was looking through a scope. With this new development, they rushed me to the back.

When I got into the room, I was pretty much out of it. I don’t remember much in between the tunnel vision and actually getting back into the room. When I got back to the room, I do remember feeling a sense of relief. Finally I was going to get “better”. Boy was I wrong. It only got worse. They had started an IV on me and there were more and more people coming into my room. I remember looking to my mom and she was such a calming force. I thought to myself that something must be going on because there are now a lot of people around. I could not catch my breath and I started to panic. The last thing I remember was taking a ton of short and shallow breaths one after the other and a doctor saying, “Ron, you need to calm down and try to take deep breaths”. When she said this, the medical staff was in the process of sitting me up. That’s when it happened. I had respiratory arrest. My eyes rolled into the back of my head, I stopped breathing.

To be continued....

Part 2 coming next Friday

Miss the first "First Friday"? Click here to check it out.

I Know My Enemy...

I have so many things to be thankful for, but here are a few that are on my mind:

- I'm so thankful that I know my enemy. I know what I'm up against and better yet, I know what I can do to help me in my fight. There are so many diseases that strike suddenly and harshly with out any warning. I've been blessed to know my enemy since I was six months old and have been given a battle plan from day one. I know no different than to be in a fight every day of my life. I'm battle tested. Nothing that my enemy does surprises me and so far I've been able to fight back with everything I have. Over the last couple of years, I've been given more weapons then ever before and it's up to me to use them. For the first time in my life, I can actually see this war being won- and not by Cystic Fibrosis, by me.

- I'm so thankful for Twitter. That sounds funny when I actually type it out, but seriously, it's been such a blessing. I have met so many wonderful CFers and CF families that I can't even begin to keep a count. It's a great way to keep up on CF news, CF events and what's going on in the CF world in general. Setting up an account is very easy and you can be active on the site as little or as much as you want. If you need help setting up an account or have more questions, please, contact me. If you're on Twitter, you can find me at @RunSickboyRun. I'll give you some other great Cystic Fibrosis related tweeple to follow if you want to contact me through Twitter.

- I'm so thankful for people that have no affinity with Cystic Fibrosis that still pour their heart and soul into raising awareness and money for the CFF. I seem to be running into these people more and more and I am humbled and thankful every time that I do. Who knows who will be next to hop aboard the CF awareness train? Could that person be the next to raise millions of dollars? We never know, which is why I treat everybody I talk to about CF like they're the key to curing Cystic Fibrosis. Like I've said before, we may be just one person away from making a HUGE difference. Maybe you're the CFer or family who will bring in the next person who changes the game?

It all starts with sharing your story.

Running is very hard...

To compare this with last week click here

...and that's exactly why I chose that form of exercise over others. I realize that I could bike, or run inside, or swim, or take spinning classes or a myriad of other things, but I choose to run because it is such a challenge. The last time I ran a mile straight (outside) was in 1996. It was for a fitness test that was administered by our football coach. I ended up running the mile in 6m 14s but vividly remember collapsing on a mat that was set over a long jump pit. I was always good (and fast) at running short distances but would avoid running long distances like the plague.

Over the years, I have literally NEVER ran outside; I would always run on a treadmill. Running on a treadmill is so much easier for me and although I never ran consistently, I was able to do between 2 and 3 miles when I would commit to running for distance. But I didn't like it, it hurt not only my lungs, but my feet, ankles, knees, hips; if it was below my waist, it was in pain. Here's the deal though: It hurts for everybody. I think that many of us in the CF community (myself included) always think we can't run long distances because of Cystic Fibrosis. But I learned something very quickly when I started talking to other runners: I wasn't alone in my pain.

When I recommitted myself to this new fitness routine I wanted to challenge myself like never before. To do that, I knew that I would have to run. There was some problems though; I didn't like running. I found it boring. I found it painful. I struggled to run 30 seconds. I don't like doing stuff I'm not good at. I figured it was to late to become "a runner". I had joint problems already. It's hot in Arizona. My mouth get dry when I run. It's hard to breathe when I run. The list goes on and on and on. Now look back at that list- see anything there that is caused by CF? Neither do I. See when you run, CF or not, it's supposed to hurt. It's going to be hard to breathe. It may be boring. I have yet to talk to a runner that doesn't have breathing problems when they run. Sure, it may come easier to them, they may be able to catch their breath faster than I can, but I'm not trying to be them. I'm not trying to break any distance records. I'm not trying to be the best runner in the world. I'm just trying to be the best runner in MY world. When I run with Mandi, I'm never trying to be better than her, I'm only trying to be better than me. Unless you can find a carbon copy of yourself, there's no point in trying to compare times or the ease at which you run. All that matters is how YOU feel and what running (or exercise) can do for YOU.

Just remember, it's going to hurt. It may not be fun. It WILL be hard to breathe. But it will help with your lung function and your overall health. Isn't that what we all want???

Last weeks results:

Thursday: Walk 5 minutes, Run 2 minutes (4 cycles)

Saturday: Walk 5 minutes, Run 2 minutes (4 cycles)

Tuesday: Walk 3 minutes, Run 4 minutes (4 cycles)

Note: Tuesday's run was way easier than I thought it would be...on the first half of the run...which was downhill. I made it though and coughed up a TON of mucus along the way. I still don't see how I'm going to make it through this new running program, but I know I'll die trying...wait, maybe not die, but Mandi will have to pick me up off the ground :)

Another note: I was so happy after making the run that Mandi and I decided to celebrate....

...maybe it wasn't the best decision, but man did it ever taste so good!

My Top Ten Favorite Movies

This may not be a comprehensive list truly reflecting my top ten favorite movies, but I don't think by fretting over this any longer the task would be any easier. I started by jotting down movies that came to mind as a "favorite" and then paring that list down to a top ten. The movie links will take you to a movie review site that I use to help decide what movies to go and see (I also use KidsInMind.com which rates them based on sex, violence and language). The site is called RottenTomatoes.com and they rate movies by a percentage (50% would reflect half of the reviewers giving it "two thumbs up"). It's interesting to see what kind of reviews the movies on my top ten list received. I encourage you to check out how your favorite movies were rated. You may be surprised.

10. Wedding Crashers -I've seen this movie about 20 times and is one of two movies on my ipod. *(L CH)

9. Shawshank Redemption -An absolute classic that I think ANYBODY would enjoy. Great story with an intriguing beginning, middle and end. (L)

8. Scarface -As a man, maybe I just feel pressure to like this movie. Seriously though, AL Pacino at his best. (L CH V)

7. Dumb and Dumber -I don't see how any human being doesn't find this movie hysterical. Come on, who doesn't want to see the snow ball to the face scene over and over again. (CH)

6. Goonies -I've probably seen this movie more times than any other. I watched it ALL OF THE TIME as a kid. I wanted to be a Goonie...I turned out just being a Goober.

5. Gladiator (1992) -Not too many people have seen this movie. It's about a kid from the streets trying to make ends meat for his family by doing some underground boxing. Cheesy at parts, but I love the movie anyway! (L V)

4. Old School -This movie is Will Ferrel at his best. This is the other movie that I have on my ipod. (L CH)

3. Gladiator (2000) -If you haven't seen this movie, go rent it right now. Violent in parts, but it will keep you on the edge of your seat and entertained throughout. (L V)

2. American History X -Another movie that a lot of people haven't seen. I think this is the best role that Edward Norton ever had (Primal Fear a close second) and the subject matter in this flick is truly remarkable. (L V)

1. Braveheart (V) -"Every man dies, but not every man truly lives": That quote sums up the movie as well as my CF Life.

My top three is pretty interchangeable. I could watch those three movies every day of the week at anytime. In my opinion, they are all true classics.

*Warnings:

L= LANGUAGE WARNING

CH= CRUDE HUMOR WARNING

V= VIOLENCE WARNING

Mandi Monday should be renamed Mandi's Meltdowns

So in the act of full disclosure, I'll tell you that I actually wrote this last Tuesday. But I did it with your best interest at heart. I had a bit of a meltdown, unexpectedly (and to Ronnie's misfortune) last Tuesday, and figured I'd write about it right away to capture the raw emotion better...for your reading pleasure.

I had a bit of a meltdown today. Why, you ask? I have no clue. Ronnie and I were sitting having our breakfast and BOOM, meltdown about health insurance. How did it come up and where did my emotions and fear come from? I have no idea. Ronnie and I both can't remember the first words out of my mouth, maybe I blacked out as I hyperventilated through my sobs? Within a short span of time I said we'd never get married if we didn't start working on insurance now, tried to find career options for both Ronnie and myself, said I felt like it was all my responsibility, wished I had a job that gave him benefits, and the list of grievances goes on. Where did that get us? No where - as Ronnie continuously pointed out during the conversation as he lovingly tried to say, "why are you worrying about this right at this moment. Nothing will change at this second by you worrying and getting worked up" to which I would tearfully respond, "one of us has to worry about it or nothing will ever change" (not so logical).

Let me give you a slight background. I have medical benefits with my job, but I'm at a SUPER tiny company, so there's no way my plan can support him on it. Ronnie works for the same non-profit part time, but if he gets benefits through it, the company's premiums go up 10 fold. He's currently still under his mom's insurance, so if we get married, he is no longer considered a "dependent" on his mom, so no insurance. Which leads me to the kicker, we can only tie the knot once I have a job that has good enough benefits for him. It has been discussed that Ronnie work (part of my melt down was that it all depended on me, and I wanted him to try also). We'll explore that option, but it's obviously a little riskier because he needs to make sure he can keep up on his treatments, working out and hospitalizations while working.

So here leads to the bigger issue that I was upset about (I think...it's tough to quite tell). I feel a little embarrassed to actually express this, but I think it may help both CFers and CF significant others, so here it goes. I felt, in that moment, like I was having to sacrifice a lot. I felt like I had to leave a job I love to get him benefits. I felt like I had to work forever to keep those benefits, while I had always dreamed of being a stay-at-home mom (like my mom was). I then thought, "well we may not even be able to have kids" (something I've always wanted). I felt like we couldn't get married when we wanted (we've been ready for awhile now). I felt like we didn't have all the time in the world (I clearly never pictured marrying someone I knew could potentially just not wake up tomorrow). I felt like I was having to give up a lot of what I've always wanted to be with Ronnie because he had CF as all those unenvisioned circumstances piled up in my mind, I got more and more worked up.

But here is what I often think about, when I return to a rational state. There are two main things:

1. I may be giving a lot when it comes to Ronnie's CF life, but I am not giving up anything when it comes to Ronnie. Ronnie is just what I need. I cannot begin to tell you what he does for me. All we talk about on here, is what I do for Ronnie and his CF because that's what this blog is about, but that's only a small portion of our relationship and certainly only 1 side of it. Ronnie is my rock. He provides guidance, confidence, understanding, excitement, support, encouragement, comfort, joy, and countless other things in my life. At the end of a tough day, one conversation with him is all I need to put the day back into perspective and make me forget the stress of anything that may have come my/our way. His sense of humor has a way of cracking me up until I've got tears running down my face and I snort (yes, snort). Also, I'm very much a rollercoaster of excitement, anxiousness, sadness, happiness, goofiness, intensity, animation, etc etc, while Ron is a consistent, steady-eddy. That's just what I need (and certainly what my future family will need). He is very much like my dad. And I can tell you that there is no better father and husband than my dad and I'd be bless to marry a man just like him (not to mention I've learned how to interact with my dad for the last 22 years, so it comes naturally). So while Ronnie's CF presents a different set of circumstances that I maybe never pictured, Ronnie is the man I always wanted and never knew I needed. And he is very much the way he is because of his CF, so I would NEVER take that away. I'd rather have the challenges of CF then the man Ronnie would be without it.

2. I may have always pictured my life one way, but that doesn't mean God planned it that way. I pictured what I've always known. A dad/husband that worked, a mom/wife that stayed home, a few kids that came with ease - as fortunate accidents, a guaranteed long life with my spouse. That is what I envisioned as a perfect, beautiful life. But what isn't beautiful about this?: A stay at home dad/husband (that is FAR more patient, just as loving, and just as good of a role model), a mom/wife that works, a few kids that are miracles, and a blessed marriage that is full of love, happiness and memories. So sometimes I need to push aside my preconceived ideas of what I wanted my life to look like and let God show me what my life is supposed to look like.

I'm not sure if these are natural feelings that come along with a CF relationship. I would imagine that they are. I'd love to hear your thoughts if you've had similar ones, or if you never have, I'd love to hear that too. I think all to often we think it's not "appropriate" to share some of the negative thoughts or fears we have. But they are quite normal and therefore healthy to discuss. I think we're often scared to verbalize things like this with our CFers because we don't want to hurt their feelings or assume that it will be insulting, but if done tactfully, it can really strengthen a relationship. They have had their whole lives to figure out their perception of their life with CF, for most of us, we are new to figuring out ours. However, I will say, my approach, expressing all of this in a moment of fear, anxiousness and sadness, maybe isn't the best. I would guess that you can probably more tactful in your approach if conversations like this are had in rational, calm conversations, but sometimes, it's just not how it happens.

So bigger lesson of the day: Share your feelings, both good and bad, about CF with your CFer. There's nothing wrong with the way you feel about it and by talking about it, it becomes you and your CFer against CF, not you against you CFer, which could happen if you bottle it up.

The Night We Met by Ronnie and Mandi

In this first edition of Sound-off Saturday I decided that Mandi and I would recap the story of the night we first met. Here's the deal though: We each wrote separate stories and had no knowledge of each other's story while writing. So here it is, a "he said, she said" about that fateful night in June when Ronnie met Sally...I mean Mandi.

Ronnie:

I first want to stress that I had met Mandi about 6 months earlier during the Christmas season while she was home on break from school. It was a very basic meet and greet and I didn't come away with much of an impression. We literally said "nice to meet you" to each other and that was it. The only initial thoughts I had was that she was smart and kind of stiff. Not so much stiff should I say, but she just sounded proper and educated, plus she had these librarian glasses on. Other than that, I knew only that she was the little sister of my good friend's roommate. I wasn't in the market for a girlfriend (my girlfriend at the time actually met her at the same time that I did) and I was enjoying myself listening to some of my friends play in their band, so I wasn't being a social butterfly. The next time I saw Mandi again was June 27th, 2008.

At this time I was again a single man, but not back in the market (or so I thought). I had recently ended a relationship so I had decided to lay low for a while and not even make very many "public appearances". See, I meet people very easily. I'm able to hold a conversation with absolutely anybody at anytime and while I understand that I don't have to date somebody just because I speak to them, I wanted to take that option off of the table. Friday night of that week rolled around and I was planning a nice quite evening at my house to catch up on some movies I had yet to watch. I got a call earlier in the day from friends wondering if I wanted to join them for a movie and I politely declined. The night time had now arrived and just as I was getting comfortable on my couch I got a call from my buddy Bryan, "Dude, why don't you just came hang out with us?" he asked. "Because I don't feel like hanging and I've already sat on my couch to watch a movie" I replied. "If you're going to watch a movie anyway, it should be with us" to which I replied "Dangit Bryan, what theater are you guys at.". Usually I don't succumb to peer pressure, but for whatever reason, that night I decided to appease my friends.

Mandi:

I met Ronnie on June 27, 2008. I was home from school for summer break and since I wasn’t from AZ, I tagged along with my brother, Josh, and his friends to a movie. I had been hanging out with them for quite some time, so I knew all of the people going. We were sitting in our seats waiting for the movie to start (I think it was Wanted that we were seeing) when Bryan, one of Josh’s friends, said, “Ronnie’s coming, so we need to save him a seat.” A few minutes later, here comes a guy with khaki shorts, a t-shirt and “the messy hair look” walking up the stairs, stopping at our row. Everyone said their hellos (all knowing each other) and then Bryan said the words that would change my life forever, “Oh yeah, Ronnie, this is Mandi, Josh’s LITTLE sister.” Boom...fireworks, we fell in love and lived happily ever after. Haha I wish! We sat there waiting for the movie to start, Ronnie was telling riddles and having Josh, who’s a genius, solve them in a matter of seconds. Ronnie made several jokes throughout the first 5 minutes and had me cracking up. Point one for Ronnie: He was a funny man. Because he was so funny, I got super nervous to make jokes because funny people have a higher standard when it comes to funny...and I’m afraid I generally don’t make the mark. Suddenly, hunger struck and I went to get some candy. As I crawled over the other members of our group and passed Ronnie, who was on the isle, I asked if anyone needed anything, to which Ronnie replied, “I kinda need to pee, think you could do that for me?” I playfully rolled my eyes and said I’d see what I could do. When I got back I made sure to get a few sexy, intriguing lines in there like, “Want some m&ms” and (handing him the m&ms again) “Help yourself”. I made occasional eye contact with him as he made little comments during the movie, but there unfortunately, that was it.

Ronnie:

I show up for the movie just in time for the previews (which are my favorite part of the experience) and give a quick greet to everyone. I remember re-meeting Mandi and I believe a friend of mine was sitting in between her and I. I should just warn you guys now, if my story sounds completely different than hers, just believe hers is actually the way it happened. I have a TERRIBLE memory. I'll often recap a story to a friend about something awesome he missed to which he will reply, "Yeah, I was there. I was sitting right next to you". Whoops. Or when I asked Mandi about how much fun we used to have playing Boggle together to which she responded, "I've never played that game". Double whoops. Anyways, I'm getting off track. I don't think there was much conversation before the movie started between any of my friends (although now I'm starting to remember playing some kind of game, but that was a different time I think). So the movie Wanted (I think) started and was entertaining as I remember although I can't recommend it to any of you because of the language. After the movie ended we all decided to head to a local (and favorite) Wine Bar called Armitage.

We got there and claimed one of our favorite couches and just started hanging out. I'm pretty sure that Mandi and I started talking almost immediately when we sat down. I'm sure we exchanged some normal stuff but then we got into the heart of what dominated our conversation for the rest of the night- relationships. Since I had recently gotten out of a long-term relationship, the topic quickly started to focus on my ex. As I recall, I did a lot of mental "dumping" on Mandi about what I thought went wrong and what I would do the next time and what I was looking for and yada yada yada. She then analyzed me like an armchair psychologist and soon was telling relatable stories. It was so nice to meet someone who seemed to understand where I was coming from and could sit there and listen as well as dominate a conversation. I've always been used to being dominate in conversations (not that I want to), so this was a welcome relief. I was able to sit back and just listen to her speak (diagnose my situation). Now, she'll tell you the opposite. That I went on and on about my ex and wouldn't shut up. That she never got a word in. What I remember though was me dominating the first 40% of the conversation and then her bringing home the last 60%.

I also remember her completely ignoring some friends of hers that showed up to hang out with her. This told me something about her that night- she actually about what I had to say and was enjoying our conversation, not just putting on a show. I remember her making me feel like I was the only other person in the bar that night. I have to say, it felt really good. What other impressions did I form that night? Instead of thinking of her as stiff, I realized that she was incredibly smart, articulate, and well-spoken, but anything but stiff. She was full of laughs, jokes, stories and just down right entertaining. I was very impressed by her. Even on that first night I remember thinking, "Man, she's like the total package". There was a couple big problems though, I wasn't in the market for a relationship and she was the little sister of a guy in our "crew". I couldn't be that guy. Plus, if we're going to be honest (which Mandi has heard this before), I really didn't think she was my type. She was blonde and she had freckles- two looks that I generally didn't go for. Throw in the fact that she was "related" and lived 3000 miles away and still in college, the last thing that crossed my mind was a relationship.

Mandi:

After the movie we all went to one of our favorite spots, Armitage, to listen to live music. I “happened” to sit next to Ronnie (You will begin to realize, I’m a VERY strategic thinker). I began to ask him questions and soon realized he had JUST gotten out of a relationship. Minus one point for Ronnie: Baggage. I began to poke and prod about him and his ex (had to know why they didn’t work so I could know what NOT to do, right?). He had no bad things to say. One point for Ronnie: Nice guy. Minutes turned into an hours of talking about him, his ex, his life, his CF. What’s that? It was all about him? You betcha...I managed to make him think I wasn’t a big talker...SUCKER. No, I actually enjoyed listening to him talk about himself. He had a way of talking that hooked me. His laugh, his mannerisms, the way his eyes would light up when I would say certain things. I loved it. One point for Ronnie: He was interesting. So I just kept digging. I couldn’t tell you how long we sat there talking. Conversation just came easy with him. There was never a lull. I was hanging on his every word. I remember wishing this night wouldn’t end and that I could learn more about this green-eyed, playful friend of my brother’s. To ensure this wouldn’t be the last I saw of him, I began to plot again. At some point, someone was leaving and mentioned future weekend plans. I quickly threw out an offer to make everyone blueberry pancakes the next morning (genius: where there is food, Ronnie will come). Ronnie agreed to show and Bryan offered up his house. Perfect, this would not be the last I saw of him.

Ronnie:

We ended up hanging out for a bit after everyone else had left back in my truck listening to music. The conversation turned towards our tastes in music at some point and she had not heard of some of what I thought were "classic" songs I was mentioning. We chatted for a while longer as I played some tasty treats for her ears. I can't recall a single conversation that we had in my truck as we listened to music and I think I was half asleep, but I do know that I loved every minute about it. She was just so easy to hang out with. After an hour or so of music we parted ways and she left me with question (which probably put us on the road to success) "If I make pancakes tomorrow morning for you guys at Bryan's house, will you be there?"

I couldn't wait for the next day.

Mandi:

Ronnie and I continued to talk as people trickled out. We eventually decided to leave since it would be an early morning of blueberry bliss. But as we were wrapping up our conversation, music started to be discussed. One point for Ronnie: He loved music. (If you’re keeping score, he’s up in points big time). Ronnie tricked me into listening to the songs he was talking about that I had never heard. Could it be that he too wasn’t ready for the conversation to end? It gave me a little hope (although he’ll tell you he WASN’T interested at all and really just wanted me to hear the songs). We walked to his car, which, to my surprise, was a Ridgeline truck. Why was that surprising? I have no idea...just surprised me. I didn’t know then, but that was the first of many surprises Ronnie had in store for me. We jumped in the FRONT SEAT (for any of you who were trying to predict the story) of his truck and he began to play song after song on his ipod. Before each song he would swear was better than the last, tell a story to set it up, or act amazed that I had never heard it. We sat singing songs, talking, laughing. A few hours past, and we decided that it was actually time to wrap things up, as we would see each other in just a few hours. I gave him a quick hug, told him how awesome it was to meet him and get to talk (I tried to play it cool while still letting him know that I thought he was the coolest thing since snap bracelets), jumped out of his truck, and walked to my car, on air.

I don’t know if I ever told him this, but I had trouble falling asleep that night. I was like a little kid on Christmas eve, anticipating the morning, when I’d get to see him again. And if I had known what I know now about Ronnie, and if I had knew where we would be today, I would have been even more excited.

This is a bench outside of Armitage. Mandi made breakfast and we ate there for our first anniversary. See the post here.

Support Systems, Sunsets and (Foot) Support Systems

So every Thursday I'm going to highlight some of the things that I'm thankful for that week. Sometimes the negative issues that come with Cystic Fibrosis can overshadow all of the good stuff going on in our lives. I have so much to be thankful for that I will never be able to cover it all, but I figured that a nice little reminder each week could be a good thing. I hope you enjoy.

- I'm so thankful for my support system. This includes my family, my friends, my girlfriend, and all of you bloggy buddies (RSR had 948 hits yesterday!) out there. It's so important to have people to lean on when times get tough and I need somebody's strength and encouragement (or food) to get me through the day or certain period in my life. This is just a small example of something my support system does for me- When I'm in the hospital, I NEVER eat hospital food for dinner, you heard that right, NEVER. My family comes every single night and brings me dinner. Whether it's my mom, dad, brother, aunt, uncle, cousin, friend, Mandi or a surprise visit from a stranger, someone is there to keep me company and bring me some "real" food. This may seem like a small thing, but I appreciate it beyond measure and hope they feel as valued as I see them.

- I'm so thankful for the Arizona weather. Sure it's hot, but it's also clear blue skies (mostly) and beautiful sunsets EVERYDAY. I always have access to a pool and I often just bob up and down on a raft and appreciate the crystal clear sky above me. I've lived in AZ all of my life and have yet to get tired of clear, bright and sunny days. The sunsets? I must say "WOW!" 360 out of the 365 days of the year when I look west and see the sun falling behind the horizon. The colors that are produced in the sky are so vivid and wonderful that a picture doesn't even do them justice; you have to see it with your own eyes.

- I'm so thankful that my foot feels better. One reason I chose to start running was because I hated it. Seriously, I've never before run in my life. Sure, I had a couple months out of my life when I would run on a treadmill and such, but I never kept it up. I for sure never wanted to run outside on the hard surface of the streets or sidewalk. No way. Too painful. Too hard. I didn't want to go through the pain to do something that I wasn't very good at and couldn't keep up. So naturally, when I decided that I needed to change some things around in my life and focus even more on my health, I chose running. I needed an enemy to defeat. I needed something to challenge me and mock me if you will. Running does just that. I started to actually "enjoy" running after a while. Not because it felt better, it still hurts like heck every time I run, but because of the challenge. So when that challenge got taken away because of my foot problems, I was upset. I actually WANTED to run and admittedly, I missed it. I recently got some specially made foot orthotics and so far, so good. I'm back to running and I can't wait to defeat this "enemy".

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!

My Top Ten Favorite Songs

I think you can learn a lot about a person based on what kind of music they like. I figured for the first installment of Top Ten Tuesday I would reveal my top ten favorite songs ever. Now, I haven't gone through this list in about a year or so, but as soon as I do (and if there are changes) I'll make sure to post an updated top ten. I'll have links from each song title going to a site where you can hear part of the song to jog, or even start, your memory. My favorite songs from 10 to 1:

10. Breakin' My Heart (Pretty Brown Eyes) by Mint Condition

9. The Blower's Daughter by Damien Rice

8. Freek 'n You by Jodeci

7. Hands to Heaven by Breathe

6. To Be With You by Mr. Big

5. Everybody Hurts by R.E.M.

4. All Cried Out by Allure

3. You're My Inspiration by Chicago

2. When I See You Smile by Bad English

And my number one all-time favorite song, with out a doubt is..........

1. Lady in Red by Chris DeBurgh

So now the question is: What does this top ten song list say about me? I'm a little afraid to ask, but I'd love to hear your answers.

Allow me introduce myself...

You all already know me as Sickboy’s exercise buddy and partner in crime, but since you’ll be stuck reading my posts once a week, why don’t I tell you a little more about myself.

I grew up all over the place. Born in Ohio, I moved every few years (for my dad’s job) from Ohio to Michigan, Michigan to Pennsylvania, PA to Singapore (in Asia), Singapore back to Pennsylvania. Once I graduated high school, I moved to Syracuse, NY to attend Syracuse University. I just graduated from Syracuse (Go Orange) in December with a degree in public relations and minors and marketing and psychology and moved out to AZ, where my parents moved while I was in college and my older brother now lives. My parents still own their house here, but are living for 3-5 years in Shanghai (that’s what brought Ronnie to China over the holidays). I am currently working full time at a small start-up non profit -- but more on that later...

Now that we’ve gotten my standard story out of the way, let me give you a better idea of me. I think you can tell a lot about someone by the things they love...so here’s a short list of things that I love: sunsets, the first sip of coffee in the morning, traveling, sailboats, live music, running, sun dresses, Skipbo, the first few hours after the sunrises, chocolate chip cookies, graphic design, time with family, bonfires, any and all candy (chocolaty and fruity), House Hunters (HGTV), surprises, Dunkin’ Donuts, Christmas morning, romantic comedies, hiking, and orchids.

That’s my brief introduction...to give you a little glimpse into Sickboy’s lady and your Monday author. I’d love for you guys to introduce yourselves to me by giving a short list of things you love...

...I look forward to Monday’s with you. Thanks for taking the time to get to know me and for reading my ramblings :)