Do I Ever Get Sick of CF?

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

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

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

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

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

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

Do Life,

Ronnie

So what about you? Do you ever just get sick and tired of being "sick and tired"?

And what about your treatments, ever feel like giving them up and just dealing

with the consequences?

Clinical Trials for Cystic Fibrosis

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

Why I'm a Cystic Fibrosis Awareness Junkie

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

They Wouldn't Let Me Film the PICC Placement

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

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

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

Hospital Stays Are What You Make Them

ENTRY BY MANDI:

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

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

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

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

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

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

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

A Panther at My CF Clinic

Here are some more videos from the clinic:

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

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

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

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

Pulmonary Function Test with Sickboy

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

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

Random Picture of the Day

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

Great Day with Two Sour Notes + Movie Review

7:00am: Today was an overall great day with only two sour notes. We were all up early this morning cause we had to take Mandi's parents to the airport. That of course was one of the sour notes. It was great to be able to spend time with them, which we don't get to do often considering they live in China, and I hope they can have another long trip out here real soon. After dropping them off, Mandi and I got back on board with our weekend tradition, that's right, good ol' Dunkin Donuts! The bagel sandwich and coffee tasted extra good this morning after my long absence from it's sweet sweet nectar...wait, not nectar, but you know what I mean. From there we swung by my place and caught up with some DVR of "So You Think You Can Dance?". Does anybody else out there watch that show? If you don't, they're down to the final 5 couples and I would recommend watching an episode or two. It's amazing what these dancers can do, especially when it comes to styles outside of their own trained skill set. I have to watch it on DVR though so I can fast forward through one of the judges. I think her name is Mary and she makes my skin crawl, if you watch the show you know who I'm talking about.

9:30am : After a little bit of TV it was on to the gym. We had shoulders and legs today which we knocked out pretty quickly. My shoulders have been a bit sore the last couple of days for some reason so I took it easy on them today. It was nice getting to the gym early on a Saturday morning cause it wasn't busy and we still had the whole day ahead of us. We finished up the gym session with 15 minutes of cardio on the bike. Here's what's confusing though: Mandi and I did the exact same length of time and I averaged more RPM than her, yet she finished almost a full mile ahead of me in distance. She did have it on another resistance level, but we found it strange that that would affect distance. Anybody know the answer to that riddle? I sure don't but would love some insight.

Total Distance: 4.2 miles

Movie Review: I'm actually embarrassed to say this, but I went and saw that new movie Bruno today (the second sour note). Mandi and I went on a whim after the gym to the movie theater. Usually I will look up movies on kidsinmind.com (a service that rates movies on language, sex, and violence) before seeing any movie. Since this was a last minute thing, there was no consulting with that site before picking a movie. We had both seen Sasha Cohen's first movie Borat and thought it was funny, and although crude in parts, I didn't think that it was over the top. Bruno IS over the top. We both felt like walking out several times, but I think we thought that it would become tamer. It never did. How this movie isn't rated higher than R I'll never know. It is SO CRUDE that it is literally disgusting in parts and I turned my head away from the screen several times. Sad thing is, the movie was at it's best when it wasn't trying for just pure shock value. When he wasn't forcing it and seeing just how far he could take things, it was much funnier. He ruined the movie by doing things that he knew would push the envelope and frankly, are pretty detestable for film. I could never nor will ever recommend this movie. I felt dirty and ashamed after walking out of the theater and I can never just "go to a movie on a whim" again. BIG MISTAKE.

Total Distance for Day: 4.2 miles

Inspire Just ONE Person

First, I wanted to thank everybody who responded both on this blog and to my personal email about some changes that I could make with RunSickboyRun. I'm still looking for other suggestions (cause I didn't like any of the others :) just kidding) and by clicking here you can get back to that blog. I would love to hear any and all changes that you would like to see. It's very important to me that I write a blog that people will enjoy going to and then telling their friends about. It's all about awareness. It's amazing the people that will follow this blog daily now. I of course have other CFers and their families, but I also have runners, triathletes, old friends I haven't seen in 10 years, and random people from random places. If I could inspire just ONE of those people to join the cause and fight along side of me, I will feel that my mission was accomplished.

I think we're really close to giving CF a big blow to the gut and taking it down a few notches. We just need help with that final push. That's where all of you come in, we can't keep CF a secret. People need to know about the disease that has taken so many of my friends, caused heartache in so many families, and eventually will be the end of me. We can't sit back and just let this thing run it's course, we need to fight, and fighting starts with creating awareness. You can't support what you don't know. People won't part with their hard earned money unless you give them a reason. I think we can give them that reason, don't you?

On a completely different note, I didn't get to the gym until later today, but Mandi's dad was able to join us. I let him pick the workout, and sense he won't be able to workout for a couple days due to travel, he took us through a total body workout. We lifted arms, chest, back, and abs. Ok, so not total body, upper half of body :) It was nice to do something different for a change and at the pace we went my muscles got fatigued very quickly. Overall, we all got a great workout in and I'm definitely going to miss Eric (Mandi's dad) being around. Her parents take off tomorrow, but then Nancy (Mandi's mom) will be back in a couple of weeks. She then will go back to China around July 30th. It's been so nice to have them around and it really stinks to see them go.

And my last completely different note: You need to read this next link I give you. It's my gal CysticGal's blog and she wrote a GREAT blog about exercise and excuses. You need to go to it by clicking here. I can't be clear enough, GO TO HER BLOG AND READ THIS POST. It is certainly a post after my own heart.

Calling All RunSickboyRun Readers!!!! I Need Your Opinions!

I'm always looking for ways to improve upon this blog and I am asking for your suggestions. What does this blog need that it doesn't have? What does it have that it doesn't need? Does my writing style stink? Am I addressing topics you even care about? Would you like to see other features or information on this blog?

I started this blog as a resource for the CF community and to also make CF personal (hopefully) to those not personally affected by Cystic Fibrosis. It is also good place to track my progress and hold myself accountable, but that is not the main reason for this blog. So I am asking for your help to make this blog better. And in case you're worried about hurting my feelings or "stepping on toes", please don't be, I'm asking for you to be brutally honest. If you don't want your suggestions or comments seen publicly just email me at coachsharpe@cox.net

Thank you all so much and I look forward to your responses!

Ronnie

Exciting Day for Mandi

6:00am: It wasn't easy, but I managed to roll out of bed this morning at 6am. J Bell was looking a little depressed to me from lack of consistent walks, so I wanted to make sure I got one in this morning. The weather cooperated with the plan as it was probably only 85 degrees or so during the walk. I worked up a decent sweat, but I think most of that was from yanking on J's leash to stop her from going after the bikers whizzing past us. The road was absolutely full of them today, so I did quite a bit of yanking. If you told me that 50 bicyclist passed by us today I would not be surprised. Hopefully one day I'll be joining them, then again, I'm not so sure about the spandex.

The walk went really well but we walked at a slower pace. Again, a huge factor was probably Jezzy and her constant pulling on the leash, but I did feel that we were moving slower. Good news is that my feet didn't hurt at all during the walk and only started to hurt later on in the day after walking around in flip-flops. I should probably try to wear my shoes around more, but I love rocking flip-flops, especially during the summer. Maybe I can get a flip-flop orthotic? Are you reading this Lindsey? :)

Total Distance: 2.0 miles

Side Note: So I'm sure you're wondering from the title why Mandi had an exciting day....drum roll please....She got a new car!!! We were out car shopping with her parents today (after months of research) and had narrowed it down to a Honda Civic or a Toyota Corolla. We found that they were basically the same car and that it came down to preference in style and how good of a deal you could get. Mandi preferred the Corolla style wise and lucky for her, the Toyota dealership was willing to play some ball in terms of the price. She got a SMOKING deal on an '09 Corolla and she couldn't be happier with her choice. She was walking on air (or more accurately, bouncing around) the rest of the day and couldn't wipe the smile off of her face. I'm so happy for her! I remember purchasing my own car for the first time and it was quite the event. Remember that? I remember saying that I would only hand wash my first car...I'm pretty sure that lasted for about 6 weeks.

So what crazy promises did you make to yourself after buying your first car? Or any good car buying stories? I'd love to hear from you guys.

Total Distance for Day: 2.0 miles

Listen to Your (Lungs) Body

I can tell that I'm coming towards the finish line folks. It's getting harder and harder to fall asleep and then I of course feel more and more tired each morning. I realize it's a cycle that I need to break, but I also have other symptoms that point to needing a tune-up. Where should I start? I'm starting to cough up thicker, larger and greener blobs of mucus. I feel slightly sick after every meal. I'm not sleeping as well due to coughing during the night. My stools are getting to the point that we have to repaint the bathroom after every time I'm in there cause the paint starts peeling from the walls. I'm sure there is a myriad of other things but I don't want to sound like I'm complaining, cause I'm certainly not. My point is, when you know, you know.

As a CFer you need to get a good feel for your body and listen to it when it's either whispering to you OR yelling loudly in your ear. After 29 years of doing this, I'll I need is a whisper from my body and I know it's that time. Too many of my CF friends ignore what their body and specifically lungs are YELLING at them and put off extra treatment or a hospital stay. And I know you've heard this 1,000,000 times from doctors, but lung damage is irreversible. Now that doesn't mean that you can't improve you PFT's, but what it does mean is that if your lung turns to scar tissue in parts, that lung ain't coming back. And if that lung ain't coming back, the chance of your numbers increasing get slimmer and slimmer. You need to stop the downhill slide when you start down the hill, not when you've reached the bottom. Ok, enough preaching for today! Now on to my workouts.

6:00pm: So today was another crazy "off" day. It was busy in parts and slow moving in others, but by the time I was ready to go to the gym, it was too late. Don't get me wrong, I still could have physically went to the gym, but I didn't feel like fighting the crowd. From about 5:30pm to 7:00pm it feels like you're in some packed dance club. I'm not a huge fan of dodging people while I lift, so I decided to stay at Mandi's and use some weights she has at her house to lift on my shoulders. It went well, but I got pain in them shortly after the workout started, so I limited myself to just 3 different lifts. Free weights have a tendency to do that with my shoulders, but I was hoping that they wouldn't notice that I wasn't at the gym :)

After lifting, and eating some Indian food (I think) with Mandi's parents, Mandi and I set off on a dog walk. Jezzabel was super excited for her walk and grabbed her leash and started walking herself before I had a chance to grab it from her. Her excitement did fade a little bit though as we set out on our walk and the temperature of the air hit us like a hot punch from Iron Mike. As I type this (it's 11:10pm) it's still 99 degrees outside. That means that during our walk it was over 100! The sun was setting as we were walking which was beautiful to see, but that beauty certainly didn't stop the sweat from covering my body. I was dripping liquid by the time we got back to the house. In fact, when we got back inside, Mandi's brother said, "Apparently it's still hot outside" after seeing the streams of salt water fall off my body. Here's the best news of all though: My feet don't hurt one bit. Maybe these orthotics are going to do the trick?!

Total Distance: 2.0 miles

Total Distance for Day: 2.0 miles

I Got My Foot Orthotics Today!!! (pics included)

I bring you part two of my journey into the world of foot orthotics. Today was the day that I went to try on the new devices that could possibly put me in a much better position to take care of my lungs.

So, I wasn't starting out so hot. I missed judged how long it was going to take me to get there. I still had over 7 miles to go with only 10 minutes until my appointment. Thank goodness for freeways and high speed limits. I made it to the parking lot right at 11am.

I was excited like a little kid on Christmas to get these orthotics. I really hope they are what is needed to get me back on track...literally :)

While I was waiting for some tweaks to be made to the orthotic I read this story in ESPN the Magazine. It's about a 16 year old kid that sailed solo around the world. It's stories like this that make me wonder "Exactly what are you doing with your life?"

Good bye old normal came-with-the-shoe inserts. You gave it a good run, but you just weren't meeting my needs. Sometimes things just don't work out. Maybe I'll see you around.

And just so you know, Lindsey is also certified to handle breasts, post augmentation.

Well speak of the devil, no wait, angel, here she is with my new orthotics.

She even gave me the moldings of my feet in case I need them in the future...and to hang from my review mirror.

I was obviously very stoked to get them. Here's to new beginnings!

4:00pm: I got a late workout in today. I had trouble falling asleep last night, so I decided to sleep in a bit. A bit, ended up turning into 9am! I'm definitely slowing down some and it's getting harder and harder to get to sleep and then as a result wake up feeling refreshed. It's a never ending cycle that I know a lot of CFers out there can relate to. Rest is very important when trying to take care of yourself, but for me, it hurts my health if I sleep in too many days. There is no doubt in my mind that what is best for me is to get up early in the morning and out the door exercising. I cough up a ton of mucus that way and my lungs will feel more clear throughout the day as a result. Today though, I apparently needed the sleep, so my first (and only) workout got pushed to 4pm.

I went to the gym to do arms and get in the cardio that I missed this morning. Arms went well but felt a little weaker than I thought they would. Chest and back went so well yesterday and I expected arms to follow suit, but they didn't comply. Luckily, I didn't have to decrease any weight on any of my lifts, but I didn't get to increase any either. Other than that it was a pretty normal workout.

I finished it off with 30 minutes on the bike today. I was already sweating like crazy by the time I got to the bike and the bike just made it worse. Worse of course in a good way! I absolutely love it when I'm sweating like a pig. In fact, if I'm not sweating, I assume I'm not working hard enough and step it up. Could be faulty logic, but I'm sure I'm full of that, so I'll just go with it.

Total Distance: 5.5 miles

Side Note: You may be wondering why I didn't test out the orthotics today and try to run. I was told to give it at least a couple days while my feet get used to this foreign object in my shoe. Once I feel more comfortable with them, I can give running a shot!

Total Distance for Day: 5.5 miles

Great Lung Workouts

6:00am: It felt so good to get up early this morning knowing that I was going to be going for a walk with J Bell. What made it even more special was being joined by Mandi AND her momma! Mandi's parents are still in town and we have been living it up for the past handful of days. One thing I want to make very clear to all of you guys: I may have taken the last three days off, but I have been VERY active. We've been running around a lot with her parents and getting stuff done, but we have also had a ton of pool time. And when I talk pool time, I'm not talking about lounging around on a raft enjoying a nice cold beverage (although I did do a little of that too). We played so many water games this weekend that it actually started to get a little weird. Especially when we would make up games or think of a game that you generally play on land and then brought it into the water.

My brothers and one of my best friends were also around this weekend and got to join in on the fun which made it extra special. I would say that Friday through Sunday we spent about 10 hours in the pool, of which 9 hours were spent playing games. Most of the games we played required a lot of moving and jumping and swimming around like maniacs. We also did a lot of hold your breath for the longest (which I won exactly 0 times) and how many times and back we could swim across the pool on one breath (again, 0 wins). To say that my lungs got some great workouts in this weekend would be the understatement of the year. I was hacking and coughing up a ton of stuff all weekend and I was able to spit most of it out of the pool. I definitely think I did see some floaters though. Sorry guys :)

Well, anyways, today's walk was good. It was actually a pretty nice temperature outside and my lungs felt decent when I got up. They're certainly getting a little tighter the further out I get from my hospital stay, but some of that is to be expected. All I can do is continue to be active and be faithful with my treatments to put myself in the best position to succeed. As the walk got under way I was able to cough up some pretty thick, but clear, stuff that cleared the old air bags out a bit. Generally, that's what happens: Tight when I start, but start to open up about 5 minutes into it. I can tell you one thing for sure also, my lungs felt different (a good different) all day today and I'm almost certain it was because of my morning walk.

Total Distance: 2.0 miles Time: 38'02"

3:00pm: I was also very much looking forward to getting back to the gym today. It's only been 3 days since I was last in a gym, but it honestly feel like forever ago. The rest was nice though and I actually felt very strong today. It was a good thing too. Mandi's dad joined us and I certainly didn't want to get shown up by the old man (I know he doesn't read this and we'll keep this between us, right Nancy?). It was a great workout and felt so good to get back to. I keep all of my lifting sessions written down in a notebook (in terms of weight and sets) and it is pretty amazing the progress I've made over the last couple of months. When this all started, Mandi and I were pretty much using the same weights. Problem is, she weighs about 70lbs. less than me. But seriously, if you want to improve upon your strength, I can't stress enough to you guys to bring a little notebook and jot everything down. Then, each week, try to either increase the weight or reps of every lift you do. You will be amazed at the progress you can make in such little of a time.

Total Distance for Day: 2.0 miles

So Why Don't You Exercise?

With so many new readers popping up I've decided to start re-posting some of my favorite blog posts every once in a while.

E-mail: Hey Ronnie-I am pretty new here...but have been following your blog for the past couple of weeks. I am sort of in a similar situation. For as long as I can remember I have pretty much had one IV clean out per year which would last 2-3 weeks and leave me feeling great. However, this past fall I was on IV treatment for a full 10 weeks...it was hell and even after that was all over my PFT's were still at an all time low. About a month ago I went to see my doc and my FEV1 was at 43% and he is trying to convince me to go on IV again. So basically all of this has scared the crap out of me. Since then I have been working extra hard to try and improve myPFTs without IV meds. I have always been really compliant, but I've added even more nebtreatments & chest pt sessions to my routine. My efforts have shown some improvement in myFEV1...now up to 48%...but still not enough to make me happy.

The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)

Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}

Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:

1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.

2) You NEED the benefits of working out more than most people

3) Most people CLAIM to not have the time to work out

4) Without a job, you have MORE time than most people to workout

Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.

So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First,commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.

Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.

Please keep me updated with your PROGRESS cause I KNOW it's coming.

Do Life,
Ronnie

Random Picture of the Day

That would be me after an awesome (and muddy) ATV ride through the jungles of Cozumel.

Cystic Fibrosis Video "starring" Sickboy

Video about how Cystic Fibrosis affects people in their everyday lives. Recognize anyone?

Random Picture of the Day

This is Mandi and I doing out best impression of Miami Vice. What do you think?

Getting Thrown Off Schedule

5:45am: It was back to a 5:45 wake up call today cause I had to get to the gym early to cram in the plans for the rest of the day. It was shoulder/leg day so the lifting part went fast and without any hitches. I then did some cardio for about 15 minutes. I wanted to go for more time, but I knew that I didn't want to feel rushed getting ready for the day, so I cut it short. I still got a good workout in and my lungs held up pretty well the whole time. They are definitely getting gunkier as of late, but I've also been off on my routine and I think that has a lot to do with it. It turns into a crazy cycle of getting to bed later and later, not getting good sleep, and then waking up later in the morning plus being more tired. Then, I would generally go to bed later the next night cause I don't get tired as early. It's so important to stay on as consistent of a schedule as possible. When it gets thrown off, I feel thrown off. Something has been different these last handful of days and I'm thinking it's a direct result of the crazy schedule. Somehow I need to get back on track.

Total Distance: 1.6 miles

Side Note: Speaking of getting back on schedule, it's going to be really tough for the next couple of days. Mandi's parents flew in from China today so we're going to be spending a lot of time hanging out with them and doing fun stuff. Luckily they're active old farts (sorry Nancy, I didn't mean it) so I'll still be active and not sitting on my booty all day. I'm sure getting the gym in should be no problem, but I may have to be creative with cardio.

Total Distance for Day: 1.6 miles

New Negative Lifting Routine + Movie Review

3:00pm: I'll tell you what, it's getting harder and harder to get up in the morning. Now, I didn't wake up at 3pm, but it was the first time that I did any other activity besides work. If I don't get to the gym to do cardio in the morning, cardio just doesn't happen. I can still do it later on during the day at the gym, but as far as walking the old pooch around the block, ain't happening. It is too stinking hot and getting up before it gets that way is getting tougher and tougher. This morning I woke up to my alarm go off at 6am but then some how blinked my eyes and it was 8am. Whoops. The morning was full of work and a little tv, but then I finally made it to the gym around 3pm.

I did a different arm workout today than I usually do and it turned out to be pretty cool. I think my muscles enjoyed doing something different and experiencing other lifts. I did a lot of "negative" lifting today. Every time I would bring the weight up, I would do that fast, but then I would lower it at a very slow rate. This is a good way to really get the fibers shaking and burnout the muscle quickly. I also did different lifts than I'm used to so I hit areas of my muscle that haven't been hit for a while. By the time it was all said and done I got a very good pump and my arms were fried. After lifting I hopped on the exercise bike and did thirty minutes. I tried to keep up a good pace but I was distracted often watching Sportscenter on ESPN and catching up with the latest from some gossip magazine that Mandi brought. I guess there's some huge love affair going on with actors from the movie Twilight. I've never seen it (is it a movie or a tv show?) and I couldn't pick put the parties involved from the crowd. I guess it's a pretty big deal though. Those magazines sure do make the time fly by!

Total Distance: 6.8 miles

Side Note: I went to see the movie Public Enemies tonight with Mandi and friends. Here's my review: 5 out of 10. It's just an average shoot em up old timers gangster movie. They do a great job at developing the main character (Johnny Depp) but I found myself bored when there wasn't a bank robbing scene. If you like the classic gangster movies I'm afraid that this one falls short.

Total Distance for Day: 6.8 miles

Went to See the Foot Doctor (with pictures)

So if you have been following this awesome little blog for any amount of time, you'd have noticed that I have a bum foot. My stupid foot has kept me from running consistently and at times I have threatened to chop it off and hope a new one grows in it's place. Mandi has reminded me though that I'm not a starfish and I should first see a specialist. Like an angel from the sky I met Lindsey through a CFF fundraiser who happened to be a what, that's right, a foot specialist (she assesses and then makes orthotics). She offered to take care of my foot and got me in to see the doc.

Here is the foot doctor journey in pictures:

POA of Scottsdale

These front doors could represent stepping into a new future of feet...I know a stretch...Sorry

My left foot is the one that has given me the most problems.

Here I am sweating bullets. I'm not at all used to doctors (I hope you can sense my sarcasm)

Why do all examination rooms seem to look the same no matter what they are examining?

If I knew they were going to have to tear the skin away from my foot to diagnose what was going on I wouldn't have agreed to the appointment. It hurt really bad, but I pushed through it.

They had me push my feet into foam to make some specially made orthotics just for me!

Here's the lab where they make all of the orthotics and fake limbs

Here's Lindsey. She's the sweetheart that made this whole thing happen. Thank you!!!!!

So I know you are all wondering what the diagnoses was. It turns out that I have pes cavus which means "highly arched" feet. For years, and I mean years, I've been telling people that I have flat feet. Shows how in tune I am with anything not called my lungs. I also was told that I have a "functional forefoot drop". What this basically means is that my heal and forefoot aren't on the same plane. My heel is constantly trying to get on that plane and by doing so it is affecting my arch. They started by giving me some "heal lifts" to try and even out that plane and then I go back next Tuesday to pick up a specially made orthotic for my feet.

I can't thank Lindsey and POA of Scottsdale enough for taking time out of their schedule to try and help me out. Thank you! Thank you! Thank you!

Some Answers About My Foot

11:00am: So my day didn't actually start at 11am today, but that was the first time that I left the house. I decided to sleep in this morning a bit (until 7am) and by the time I got up it was a little too toasty to walk outside. I was very excited to get to the foot doctor today and see if he could get everything figured out. I got some answers which I will do a full blog on tomorrow with pictures.

3:00pm: It was off to the gym for a little chest and back. I've been a little tired today so I knew it was going to be a challenge to push through my entire workout. Luckily, Mandi wasn't really in the mood to be at the gym, so we were able to be unhappy together while we lifted :) We managed (somehow) to do the full workout and it was actually a decent one. I was able to increase the weight on almost all of my lifts and felt much stronger than I thought I would. I also sweat probably 43 gallons of sweat into my shirt. I was absolutely soaked. It looked like I had entered a wet t-shirt contest in Cancun or something. One reason I was so sweaty was because Mandi and I decided to take very short breaks in between lifts so the "misery" wouldn't last so long today. We both just wanted to jet. Like I've said many times though, if you can stay committed on days like this, imagine how easy it will be on the other days? Current Weight: 187 lbs.

Is a Little Infection Coming My Way?

6:45am: So here's what stinks about Arizona (just a little bit), I got out the door to walk at around 7am and it felt like I was stepping into an oven. It was barely even the morning yet! What's going on people?! About .5 mile into my walk I could tell that J Bell was dragging and to be honest, I think I was as well. I turned back to the house to get back into the comfort of some A/C. I figure that I either need to start doing cardio at the gym or I need to get up earlier. Since getting up earlier is become less and less of a viable option, it looks like the gym is going to have to be the place for the cardio. Luckily, J Bell was happy with her little one mile walk and was pretty pooped from the heat when we got back home.

Total Distance: 1.0 mile

The rest of the day was kind of blah. I had some work issues that were weighing on me a little bit but I think that overall I was just a little worn down. I wouldn't be surprised if a little infection is brewing as well. I've looked a little flushed at different parts of the day and have felt like I was running a bit of a fever. I ended up ordering some inhaled TOBI from the pharmacy that I will pick up tomorrow in case anything is going on. I took it easy for the most part today, but I felt like I had to do something since my walk this morning was only 1 mile. That something was playing in Mandi's pool with her and her brother Josh for about 90 minutes.

We played just about every pool game I can think of. We saw who could hold their breath the longest and I won!...just kidding, I held it for 30 seconds and thought I was going to pass out :) We did Marco Polo, we did sharks and minnows, and we did some other games that they might have not even come up with names yet. Mandi and I did some pool dancing and we tried to do some cheerleader lifts. That didn't go so well, I'm a bit too weak. I did however get some great cardio workout in and was moving some stuff up my horsing around in the pool. Just as a side note: before my last hospitalization I didn't have the energy to do pool games. Mandi even made that comment as we were playing around. It's nice to hear and see real progress like that.

Side Note: I'm going to the foot doctor tomorrow! They're going to check me out and see if a specially made orthotic will help with my foot pain. I'm soooooo stoked!

Total Distance for Day: 1.0 mile

24.1 Total Miles for Week of June 22nd

Week of June 15th: 11.85 miles

Week of June 8th: 6.95 miles

Week of June 1st: 10.6 miles

Week of March 25th: 17.85 miles

Week of March 18th: 11.75 miles

Week of March 11th: 17.2 miles

Week of March 4th: 17.7 miles

Week of April 27th: 15.7 miles

Week of April 20th: 22.9 miles

Week of April 13th: 18.75 miles

Week of April 6th: 20.95 miles

Week of March 30th: 31.7 miles

Week of March 23rd: 24.48 miles

Week of March 16th: 34.85 miles

Week of March 9th: 23.6 miles

A (1.7 million dollar) House Hunting Sunday

My Sunday started out like every other Sunday which is church and Dunkin Donuts. After church and DD we decided to do a little house hunting. Now, it's not really that I'm looking for a house right now, but if one fell into my lap that was a steal, I'd take it. The prices in Phoenix and in the surrounding valley are incredibly lower and I have a feeling will become even lower yet. The biggest reason we went on a house hunt today is because Mandi and I thoroughly love looking at homes and going into open houses. I find it very interesting when houses are staged and often times you can get great ideas on how to decorate your own home or which walls to paint what color and with what accent. Sorry, my HGTV spirit started to come out. We drove around a lot of Chandler weaving in and out of streets trying to get a feel for what type of homes are in the area. After many zigs and zags in Chandler we decided to switch it up a bit and head 40 miles north.

It's amazing how big Phoenix is. We drove 40 miles to the north of Chandler and were in city the whole time. We ended up looking at some custom homes outside of Phoenix that people ended up not finishing and were letting go at rock bottom prices. The only problem with the area that we were looking is even the nearest grocery store is quite a ways away. One thing that is very cool about the area though are the amazing mountain views, the wide open space, and the proximity to nearby lakes. We started to make our way back to Mandi's parents house by swinging through a "town" called Fountain Hills. We actually stopped about halfway through town and toured an open house. It had great views, but was a little outdated for my taste.

Before we went to Mandi's house we did stop at one more open house on the way. This one was in north Scottsdale in a gated community called Sierra Something or Other. The house was 6277 square feet with 6 bedrooms, 7 bathrooms, a theater, a gorgeous backyard, and about every upgrade you could imagine. It could all be yours for the new low low price of 1.7 million dollars. Here's the crazy part about that, it was recently reduced from 2.7 million dollars. To give you an idea of how impressive this house was though, it was rented out to Kid Rock for $10,ooo a week. VH1 rented it for 50,000 for two months to film the reality show Pick-up Artists 2. It was crazy cause I actually recognized certain parts of that house from the show. I was pretty awestruck my whole time in that house and I had one thing running through my head the whole time: If I bought that house, I would HAVE TO start an orphanage.

The day concluded with a trip to the gym. It was arm day and my arms felt pretty beat up after about two lifts. It was hard to push through at the gym today, but I'm very glad we did. I spent about 30 minutes trying to talk myself out of going until Mandi talked (twisted my arm) into biting the bullet and just going. It proved to be a good workout overall. I'm so lucky to have Mandi! Current Weight: 188 lbs.

Anniversary 2009- Pictures Included

Mandi and I took the day off today and just enjoyed each other's time. One year ago today, we had a real conversation for the first time. We both count it as the day we started our relationship, cause after that first conversation, we just knew. Crazy how things work like that sometimes. Anyways Mandi of course made it a very special day by setting up a breakfast at the spot that we had our first official "date". We actually sat on the bench in the pictures below until 6:00am the next morning and then decided to go to breakfast. It's been lollipops and gum drops since. After breakfast we went and saw The Proposal (started at 9:40am!) and I would HIGHLY recommend it. It's a good clean movie that had me laughing in many parts during the movie. It's also a great date movie if you're looking for one of those. The rest of the day was spent relaxing with Mandi and her periodically telling me to look in a certain area in her house where I would find little love notes that she had placed throughout the morning. She is seriously the sweetest and bestest ever! We capped the night off by going to my favorite restaurant in town (Havana Cafe) which is known for their great Cuban food. Couldn't have asked for a better anniversary day! Enjoy the pictures!

This is the exact table and bench that we stayed up all night talking one year ago.

Breakfast fit for a king: Waffles with strawberries, blueberries, and whipped cream

Not sure what was going on here but apparently I was enjoying the food.

A view from a little further out...and again, me enjoying the food.

Me and my baby

The Balance: When to Push and When to Nurture

**My fantastical girlfriend Mandi has agreed to do more guests posts after the overwhelming appreciation of her posts in the past**

I get that I don’t get it. I don’t know what it’s like to wake up everyday with lungs that feel tight. I will never know how it feels to exercise with “only a straw to breathe through”. I won’t get sick and tired of feeling sick and tired. I’ll never quite get CF!

But while I’ll never get CF, there are certain things, as a CF loved one, that I can work to understand. One of the most important, in my opinion, is knowing when to push and when to nurture. There’s a delicate balance between pushing someone to do their best and pushing them past their breaking point. At times, we all need to be encouraged to go further than we think we can. There are also times that we feel so crumby we just want to be loved on. For example, there are times while running that Ronnie feels like crap (excuse my bluntness). At times, it is advantageous for me to say, “Come on get going, your body is supposed to hurt like it is”, when he’s so winded and I hear him gasping for air. Now do I know that he is, in fact, supposed to feel like he’s feeling? No, because like I said, I don’t get it. But I have learned, that afterward, he often feels good, so I push. There are other times, like when we were making our way home from China, that he wasn’t supposed to hurt like he was hurting. How did I know that? I’m no doctor, but I certainly can tell when someone’s skin looks flush, they appear to be passing out in flight, and have trouble completing whole sentences without keeping their head from drooping, their eyes from glazing over, and gasping for air with a pained look on their face. Also, I know Ronnie and unless he’s feeling really bad, he doesn’t let on.

Now let me come back to the statement: “there’s a balance”. What is it? I have NO clue. I think it’s different for every CFer. For loved ones of CFers, I encourage you to watch your CFer closely. Study them. Learn what they look like when they’re “just being lazy” vs. when they’re actually suffering. A good way to tell is by trial and error. When you see them slacking, being lazy, not doing treatments, not exercising - push them. Pay attention to see if they end up being able to push through or not. Then reflect and make note what they were like prior to the success or failure and use that as the gage for next time. There is no science to this, unfortunately. For CFers, help us non-CFers out. Tell us how you’re feeling. Communicate with us why you can or can’t push through at certain times. That will help us help you be more successful in your day to day struggles. We don’t get CF; we can’t. But we want to get you, so help us out by explaining to us how we best can help you.

Workout Before Your Treatments

7:00am: Today was probably one of the best mornings of the week. I think stepping it up on cardio definitely helped clear out the lungs and keep them open. It's still harder to get up and rolling out of bed, but once I'm up and start moving, I feel much better. I'm sure I've recommended this before to all you CFers, but I'll say it again: Try to get up and moving around BEFORE your morning treatment. I always cough way more during my morning walk than I do if I do my treatments first thing in the morning. I realize it's different strokes for different folks and that it won't work for everybody, but I suggest that you at least give it a shot!

My foot actually felt decent today too. I heard back from a friend of mine that works at an orthotics place and she said the doctor is on board to look at my foot. I think I will be going in at some point next week. Hopefully it can get figured out and I can get back to running, I really miss it. Today was a good day though in terms of my foot and I was able to fly through this mornings walk. I at least hope my foot can stay at the level it is now. I haven't really limped from the pain for at least a couple of days now.

Total Distance: 2.0 miles Time: 36'17"

4:00pm: I had to rush through my chest/back workout today to be back in time to get ready for game night. I didn't miss any lifts, but I did rest less time in between them. When I was done with my workout I was drenched with sweat. What really got me today was the push-ups. Generally I do 3 sets of 10 with my feet on a ball and my hands at various widths apart. Today I did the same thing except for I did 3 sets of 15, 12, 10 and I put one foot on the ball and balanced myself. Does that make sense? Probably not, but just trust me, it wasn't easy. Although it was much better than a sharp stick in the eye so I'm not complaining. Overall, it was a great workout and I was able to increase the weight on most of my lifts. I really hope I can finish strong these next couple of weeks and be in as good of shape as possible before heading into the Hole.

Total Distance for Day: 2.0 miles

Please follow Streets of New York on Twitter!

If you have a Twitter account, PLEASE follow @StreetsofNY. They will donate 1 dollar for every new follower they get today, Friday June 26th. If you don't have a Twitter account, just go to Twitter.com, establish an account, and then follow StreetsofNY. We're all about the CF community and this is a chance to make a real big difference in one of our fellow CFer's life. Please do this for him, his name is Josh Willis. Thank you.

EFX Interval Training

6:45am: So this morning was a little tougher than yesterday morning and I really don't know why. I slept well and went to bed at a decent hour but I was still pretty groggy this morning. Maybe I'm tossing and turning more than I realize at night? I should set up a camera tonight and see how I'm really sleeping. Let's hope tomorrow morning is better. Anyway, my legs were pretty dead too, so maybe I just need to get more sleep. I usually get about 7 hours which seemed to be working pretty well up until a couple of days ago. My lungs are also starting to feel junkier and junkier so it's probably all related. I have a clinic appointment on July 13th and I wouldn't be surprised if I ended up in the Hole.

The walk went well this morning even though I'm pretty sure it was already above 90. I don't mind too much cause the sweating makes me feel like I'm working hard, but it also zaps my energy much quicker. My foot did ok, but certainly not to the point of being able to run on it. I REALLY need to go and get it checked out this weekend. Can somebody out there please hold me accountable on that?

Total Distance: 2.0 miles Time: 38'47"

2:00pm: Mandi and I went to the LA Fitness near her house today to do our legs/shoulders and some more cardio. We actually used free weights today with our shoulders but still kept it SUPER light. I used 10 lbs dumbbells for almost every shoulder lift we did. For legs we did a variety of squats and then some wall sits. My legs were shaking like crazy towards the end of our work out so I think we targeted them very well. After the lifting portion of our workout we headed over to the EFX machines (elliptical). Our original plan was to do the EFX for 15 minutes and then finish on the bike for 15 minutes. We both did the Interval program on the EFX which will do know incline for 2 minutes and then will switch to a steep incline for 2 minutes. It constantly goes back and forth for the whole workout and also changes how much resistance is given. If you haven't tried it, and want a good workout, I would suggest you give it a shot. We were enjoying it so much that we ended up doing the EFX for the full 30 minutes. At the end of the half hour, my shirt was absolutely drenched with sweat.

Total Distance: 2.8 miles

Total Distance for Day: 4.8 miles

Body and Soul of a 65 year old

6:30am: I think I'm getting older and older by the day. I've often told people that I have the soul of a 65 year old, but when I'm trying to get out of bed I'm pretty sure I have the joints and body too! It just feels sooooo good to lay there. Problem is, laying there is doing nothing positive for my lungs. I decided that I would do the gym this morning and get that out of the way cause I know it's going to be a crazy work day. It was arm day which as you is one of my favorites. My shoulders were actually giving me some problems this morning though so I actually cut out two of my tricep lifts. Both of the lifts (overhead tricep extension and dips) put unneeded strain on my shoulder and I got a good pump already from the other lifts. I really like getting my workout over and done with in the morning just sometimes I don't have the time due to other obligations. Since I still need to eat and do my treatments when I get home from my morning workout I can count on staying around the house for at least an hour. That's why I usually do Jezzabel's walk in the mornings cause it only takes around 40 minutes (and I cough a little bit more...and can spit it on the ground). Anyway, glad I've got the gym out of the way, now I just need to figure out what sort of cardio to do later.

So the rest of the day got sidetracked with a bunch of work and excuses. I WAS going to do more cardio but Mandi's brother grilled up some meat just before I was going to take off. I couldn't turn that down right? Then I WAS going to do cardio after dinner but I ate too much and felt super full. I'll tell you what, excuses aren't going to make these lungs any better. If I get sick I can't blame the excuses, I'll only have me to blame.

Before and After and After Pics

Back by popular demand are my before and after pics...ok, Mandi's mom reminded me that I needed to do a new one.

3/10/2009

4/20/2009

6/23/2009