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

Regular Hospital Stays

6:15am: When the alarm sounded this morning I have to admit, I hit the snooze button...3 times. I still rolled out of bed though at 6:15am so I guess that's not too bad. When I actually got out of bed I felt pretty well rested and was ready to get my walk on. I made the mistake of checking my email first which then turned into responding to all of my direct messages on Twitter. By the way, I would encourage you to set up a Twitter account. There are quite a few CFers on there that are tweeting very interesting stuff all of the time. I often tweet tips, tricks, research and a variety of other things that are CF related. You can get to my Twitter page through this link (@RunSickboyRun) and start following me there! I've met many other CFers through that medium and also made others aware who were not before. Alright, that's the end of my Twitter plug.

So by the time I was done on the computer it was 6:50am, which wasn't too bad cause it was still on the cool side outdoors. Don't get me wrong, the cool side is still a bit hot, but it's better than 100+. The walk went well and I definitely felt better than yesterday. Mucus still looked like Elmer's glue, but it was definitely easier to cough up and spit out. My lungs also felt a little better as well. With all of that said though, I still called and made a clinic appointment for July 13th. It will be over 4 months since I've been out of the Hole and I generally go in every 3 to 4 months. I want to stay on top of my progress and I'm finding it harder and harder to get up in the morning and sustain enough energy to get through my workouts. I can still handle it, but I don't want to all of the sudden get surprised and end up like I did in January. I'm hoping it will be shorter than my other stays (usually 30 days) and I could get on a every 4 months for 2 weeks at a time cycle. We'll see how this first trip back goes and then play it from ear.

Total Distance: 2.1 miles Time: 38'46"

4:00pm: Today, Mandi and I did a slightly different routine at the gym. It was a chest/back day but we didn't do the full workout. Instead, we did "burnouts". Let me explain...for bench press we both did sets of 10, 8, 6, 4, 2, 1 and increased the weight with every set. At the end of completing all sets I put four 5 lbs weights on each side of the bar. I then would press that bar as many times as I could until exhaustion. When I couldn't lift it anymore, Mandi would take off a 5 lbs weight from each side and I would then try to lift that as many times as I could. I repeated the same steps until I was down to nothing but the bar. I only could lift the bar 6 times! I was pooped. We did something similar with back and then we ended the workout with set of pushups and pull-ups. At the end we could barely move the upper half of our bodies.

It was then on to cardio. We both rode the exercise bike again today. I'm still staying off my foot until I can get it looked at. A girl that I developed a relationship with through the CFF actually works for a place that makes orthotics and she said to come in soon to see her. So hopefully I will stop making excuses and things will slow down a bit so I can swing on by. I guess I just made an excuse didn't I? Whoops. Anyway, we did about 25 minutes on the bike, sweated our butts off, and then headed back to my place to get ready for some Bible Study...and Dunkin Donuts. Current Weight: 185 lbs.

Total Distance: 6.0 miles

Side Note: While I was lifting one of the managers at the gym came over with a prospective client. He was showing him around the gym to try and sell him on a membership. He came over to me to say hello and probably show the guy that they develop relationships with people there who come to work out. I had befriended this particular manager at a CFF event that he volunteered at and challenged him to get his gym involved in the CFF. Anyway, he came over to say hi and then proceeded to say to the prospective client "Have you ever heard of Cystic Fibrosis? Well, if you ever hear anybody talk about make sure you get out your check book and write a check for CF...you ever hear of it?". I was actually surprised that the manager was talking like this, but being who I am, I was very happy and made sure to seize the moment. Just before seizing it though the guy responded, "Yeah, I have. My sister-in-law has it, she's 37". What a small small world.

Total Distance for Day: 8.1 miles

Rocky Point 2009 (pictures post)

Sorry it took so long to get these pics up! I'm slacking! Here are some of my favorite pics from my Rocky Point, MX 2009 family trip. Enjoy!

First stop: Dunkin Donuts

Second Stop: Grandma's house

All packed up and ready to hit the open road

Apparently I was getting ready to say something

My little cousin was giving manicures and pedicures...to boys ONLY!

We all know that I took full advantage of a little pampering

My cousin Janee even got into the mix by styling my hair

We had about 6 birthdays to celebrate while we were down there

This is where everybody generally ate

Mandi and I hanging out on the beach

I Coughed Up Elmer's Glue

7:30am: So I wanted to wake up a little earlier this morning, but when the alarm went off at 6:45am I still felt like somebody had put me into a medically induced coma. Since I woke up at 4am yesterday, I decided to cut myself some slack and sleep in for just a bit. It was very well worth it. I woke up feeling very refreshed and ready to take Jezzabel for a spin around the block. When I took off though, I could tell that this was going to be a more difficult walk. I think being off of my normal routine (with the vacation and all of the CFF events) has set me back a bit. My lungs have been way tighter the last couple of days and my mucus is much more thick and sticky. Luckily, it hasn't yet changed into all of the colors in the rainbow, so hopefully that's something I can avoid for a bit. It's also been tougher to get it out and up. I had to cough really really deep this morning to get the stuff moving and instead of it coming right up, it often took multiple coughs. It felt like I was working Elmer's glue out of my lungs and out of the back of my throat. How do I know what that feels like you say? Let me tell you.

When I was 8, I had a fascination with Elmer's glue. I would constantly be making little art projects with it on construction paper. You know the type: trees drawn with crayons and then cotton balls glued down to make the clouds. You could even color the glue green with food coloring to make the grass. Anyways, I always had Elmer's glue in one hand and a Popsicle stick (or some other applicator) in the other. One day I got the bright idea to taste the Elmer's glue. I didn't want to wait either, so I unscrewed the top, held it over my mouth and then squeezed. We all know what happened next, glue went shooting down into my mouth into my throat (and all over my chin) so much in fact that I started to gag. The gagging led to coughing and then at some point I inhaled. Boom, Elmer's glue down the ol' wind pipe! I coughed and coughed and coughed until I finally worked all of the glue out of my throat and out of my lungs. I also made the mistake of trying to wash down the excess glue with a glass of Kool-aid which then turned into a tummy ache for the next couple of hours. So anyways, that's how I know what it feels like (DISCLAIMER: That story was completely and utterly false. I was just working on my creative writing skills. How'd I do?)

Ok, back to reality. If I had to GUESS what it felt like to cough up glue, it would be what I felt this morning. I coughed most of the way through my walk, but towards the end I really started to open up and the mucus thinned out a bit. I'm going to focus on not missing any treatments this week (I think I missed 4 of 28 last week) and doing more cardio at the gym (definitely been slacking there). Let's hope this works and that I can stay out of the hospital for a couple of extra weeks.

Total Distance: 2.1 miles Time: 37'27"

3:00pm: So today was shoulder and leg day at the gym. To remind you, this is always the "easy" day cause I only do rehab type of lifts on my shoulders and then legs I tend to go light on the weight. It is a little tougher than my other workouts though in terms of cardio cause I never take a break. I alternate with Mandi from shoulder to leg to shoulder etc. I always have a good sweat going by about the 3rd exercise. The lifting portion of our gym session went well and then it was on to some cardio. I need to step it up this week because my lungs are a bit tighter and junkier than normal. Today, I chose to do the exercise bike. I'm not a huge fan of them because they always make my butt hurt, but I didn't want to pound on my foot at all. I picked up a July 2009 issue of US News and World Report and started pedaling my "little" tooshie off. 30 minutes later I was drenched in sweat and my lungs felt pretty darn good. I actually did less coughing than I expected to do (I'm sure the people next to me were thankful for that) but when I did cough I was able to get stuff moving. When I got off the bike I felt that "high" that only exercise can bring and made my way to the locker room...slowly, cause my butt was asleep. Current Weight: 186 lbs.

Total Distance: 7.1 miles

Total Distance for Day: 9.2 miles

Trip to Flagstaff

4:00am: Yes, you are seeing that time correctly. I woke up at 4am this morning! It wasn't to work out though, it was to take a little road trip. My little brother had a basketball tournament about 2 hours up the road in Flagstaff. I couldn't think of a better way to spend a Sunday than watching him hoop it up and escaping the 100+ degree heat for a day. The drive up is also a pretty nice one with all of the rolling hills and lush pine trees that are on both sides of the freeway. Don't get me wrong, first I had to get out of what seemed like an hour long of road construction, but once through that it was nothing but me and the open road, oh, and Mandi. The tournament itself went well with my brother's team finishing with a record of 4-2. It's always fun watching either of my brothers play sports, and yes, I am that guy that is yelling at the refs from the sideline.

6:00pm: I was very proud of Mandi and I that we made it to the gym today. After a "long" road trip and not much sleep the night before, I was dog tired. Hardly anything in me actually wanted to go to the gym, but I knew that I would regret it if I blew it off. Plus, it's kind of hard to skip anything with Drill Sergeant Mandi breathing down my neck. The workout went very well and my chest was still sore from what we did yesterday. That's always a good sign in my book! We tried to get through arms as quickly as we could so we could just get back to my house and relax. It was a pretty busy day, but we were able to wind down with some TV and dinner. By the way, if you've never seen the show Wipeout on ABC, you HAVE TO give it a shot. I literally cry tears every time I watch that show; it is so funny. Alright, that's my show plug for the day, you can make that check out to Ronnie Sharpe. Thanks ABC!!!!

Feeling Guilty About Sleeping In

1:00pm: Today was just a crazy day in general. I got home extremely late from last night's 80's party to benefit the CFF and by the time I did my treatments and got in bed it was well past 2am. For me, that is SUPER late as I am generally in bed by 10pm. Here's the kicker though, when I wet to bed I decided not to set an alarm and to try and sleep in. When I woke up I said to myself "I hope it's at least 8am" and grabbed my phone. It said 10:58am! I was in complete shock! I cannot think of the last time I slept in past 9am, much less to almost 11am! I felt guilty pretty much the whole day because I kept on thinking about how much of it I wasted.

I was able to get a good gym session in though and for that I am very thankful. I was worried for today's chest/back day cause I figured I would be a little weaker since I haven't lifted that muscle group since the 9th. To my pleasant surprise, I felt very strong and was able to increase the weight on most of my lifts. I think the whole Rocky Point trip really did a wonder for my body. I'm going to have to figure out a way to give myself some more rest from time to time. I have noticed though that I don't have as much muscle tone or bulk since the break, but my weight has gone up. Hopefully I'll be fully back in the groove faster rather than slower and I'll see some results again quickly. I wonder what the right balance between exercise and rest would be? Any suggestions? Current Weight: 187 lbs.

Dang You Global Whatever You're Called Now!

7:15am: Definitely felt a little junkier this morning than normal. Not sure what it is, but I was coughing up mouth fulls of globbery goo. My legs were also still asleep this morning when I woke up due to the intense leg workout that Mandi put us through yesterday. I had to shake them for a while before they would actually respond to any of my commands. When I finally got them to cooperate I was off and running on the ol' dog walk. Ok, I wasn't running, but at least I was off. It was another great morning and to me it seems unseasonably cool out. Don't get me wrong, we're still 100+ during the day, but I always remembered it being way hotter in the mornings. Dang you Global Warming, I mean Cooling, or whatever you're called now. Well whatever it is, I hope it keeps up cause I love the temperature to be in the 80's while I'm walking. So if you're listening Global Climate Change, if you could just keep it where you're at for a while that would be great, thanks!

My legs really started to get warmed up during my walk and my feet weren't sore at all. Maybe that's the key that I can take away from yesterday: stretch out my feet until they hurt so bad I can't stand and then look forward to a pain free day the next. Who knows right? Well I also coughed my brains out on the walk this morning. The good news is that most of the mucus was clear with just a slight yellow tint being in some of it. Bad news is I may have coughed up all of the colorful stuff while I was in bed and swallowed it which would explain my slightly upset stomach. But I did get a ton of stuff out this morning so overall I am very happy about that. I'm just hoping to avoid the lung pain that often follows mornings full of coughing.

The next couple weeks I'll be keeping a very close eye on my lung health cause I know it could be getting to that time to get a tune-up again. I am very pro-active with my hospital stays and as soon as I feel myself slipping, I go in. For me, I need tune-ups to continue living the lifestyle that I'm accustomed to living.

Total Distance: 2.0 miles Time: 38'12"

Total Distance for Day: 2.0 miles

Please Take My New Poll!!

So I've had a couple debates on what to call the general CF population, so I am wondering what term is best. I understand that none of us are defined by CF and if you have read my blog at all you know that I don't let CF define me. With that said, I still have CF, and so do 70,000 people in this world. When you refer to friends of yours with CF, what terms do you use? What do your doctors say when referring to you? I know for me, I have heard them refer to us as both Cystics and CFers. I for one don't care what the term is and as you can tell I don't get in the least bit offended. I gave myself the name Sickboy for goodness sake. Now you tell me, do I act like I have a helpless attitude because others refer to me as Sickboy? The more people that have CF on the tip of their tongue the better. If they think of me and then think of CF, great! Now I hope they get involved and they give to the CFF! Awareness is key to this disease and the more comfortable we are with a "label", the more comfortable other people will be with Cystic Fibrosis in general. Often, the general population's view of CF is a direct reflection of ours.

Just my two cents. Would love to hear your thoughts and see the poll results.

Thanks.

Tried the Bike for the First Time...

6:30am: ...and I loved it! Waking up wasn't the easiest thing this morning, but when I finally put my feet on the ground, I was ready and eager to get the day started. My foot was a little sore so I decided to try something that I haven't even attempted yet, I got on the ol' bicycle. It was actually a mountain bike, but nevertheless, it had two wheels, some pedals, and a chain thinger mibobber. Now one thing I need to warn you with right off the bat when riding a bike: although going down those hills are fun, you need to come back up those very same hills. I learned this the hard way. The first half of my bike ride was almost all down hill. I was thinking to myself, man, I really dig this whole biking thing! The wind blowing in my face, barely having to pedal, I could get used to this I thought. I ended up going 3.25 miles one way and feeling great when I had arrived at my destination. Then I turned around and saw this big beast of a hill staring right back at me. Let me tell you, when going up the hill I would be shocked if I ever went over .001 mph. It felt like I was moving in super slow motion and my legs where on fire, that I was sure of.

When I finally got to the top of the hill I started coughing like a madman. It felt great! I was getting up all kinds of gooey stuff. We of course all know what came after this: ride-by dry heaving. All I could picture was a fellow biker passing me by and getting thrown up on in the process. I ended up not blowing chunks, but there were tears rolling down my face as a result of all of the coughing and heaves. People passing in their cars must of thought that I was in some major pain and I must have looked like a real hot mess. It was worth every second though. I cleared a bunch of mucus from my lungs and they really opened up on the second half of the ride. Most of the ride back was on a slight up hill but no where near what I had come from. I kept a nice steady pace but I'm not exactly sure on the time. I'll have to continue this whole biking thing as much as I can cause it certainly isn't as hard on my feet and it definitely got the deep breaths going!

Total Distance: 6.5 miles

6:00pm: Mandi and I tried something a little bit different today for our workout. Usually on shoulder/leg days it doesn't take us very long at the gym, so instead of driving the 20 minutes to the gym, we decided to stay at her house and use weights there. She has an old set of dumbbells and straight bars and free weights which we took full advantage of today. Mandi took us through a leg workout in her backyard that absolutely kicked my butt. We were doing squats, and lunges, and one-legged squats, and who knows what else. All I know is that it took my legs about 2.2 seconds to feel the burn and old Mandelin didn't let up. She would just slap me on the butt and tell me to keep moving! We also did shoulders with the dumbbells and were able to do most of the exercises that we do when we're at the gym. I think my shoulders got a good rest while in Mexico cause they weren't sore at all today while I lifted. We'll have to see how long that keeps up.

Right after the workout we decided to walk J Bell. She was excited for her walk and the weather was perfect. The sun was setting as we walked and we had a perfect view of it the whole time. We cut our walk short cause we didn't want to press it with my foot. During our leg workouts it got really sore during the squats from stretching my arches. As I type this blog though my feet are feeling pretty good, so maybe that's just what they needed. Who knows though. I'll just have to bite the bullet and go see someone soon about these pesky little feet.

Total Distance: 1.25 miles

Total Distance for Day: 7.75 miles

Recovering from Vacation!

6:30am: I can't express to you how good it felt to wake up in my own bed this morning. I've been sleeping on a couch for the last four nights and it just doesn't compare to the cloud I sleep on at home. Don't get me wrong, the couch I sleep on in Rocky Point is more comfortable than any of the beds, but it's still a couch. I will be posting pictures soon from my trip so stay tuned for that.

Well, it was back to the grind this morning. I have definitely felt the difference in my lungs for the last couple of days while being in Mexico. It's not that I wasn't active, but it was just a completely different routine. We took plenty of long walks on the beach, played a lot of Frisbee golf, jogged around, and did some sea kayaking, but it just didn't clear me out like my routine at home does. There were also a couple of days that I only did three treatments instead of four so that could have made a difference as well. You should have seen the look on my little cousins' faces when I would slap on that vest, it was priceless. I offered to let them try it on multiple times, but they would politely say no and then run away! Can't blame them, I probably looked like I was going through some kind of Chinese Water Torture. I also have to give a shout out to my family for putting up with me starting my vest during breakfast almost every morning while people were gathered around the table eating and talking. It's not always easy to carry on a conversation while somebody sounds like they are jackhammering concrete right next to you. But after 29 years of this, they all take it in stride!

This morning I walked Jezzabel around the normal 2.1 loop. She was SO excited this morning for her walk that she could barely compose herself while I tied up my shoes. It was a slightly overcast morning so it wasn't quite as hot as it should be which I will always take on these summer mornings. The beginning of the walk was a little rough for me. I couldn't stop coughing and I was close to barfing about 17 separate times. I was slightly sick to my stomach and I ate dinner a little late last night, so I'm probably fortunate that I didn't toss my cookies. My legs felt very well rested but my feet did not feel great. I walked around Mexico with no shoes on for the last 5 days, and being flat footed, my feet did not appreciate that very much. I promise that I will go to the running store by this weekend and try to get everything figured out. Maybe some of my blogging cysters and fibros out there can hold me accountable on that one? All in all though it was great to get back into the routine and I'm excited to hit up the gym later today.

Total Distance: 2.1 miles Time: 37'34"

4:00pm: Instead of trying to figure out which day I left off on and which days I missed I decided just to start my lifting schedule over based on the day of the week. Today is Wednesday, therefore I had arms today. Mandi was excited to hear that since arms are her favorite day. She loves being able to flex her guns at me and ask "if I have a problem?". It makes me smirk every time. I must say though, if any 115 lbs girl could kick my butt, it would be Mandi. Anyways, I was looking forward to getting back in the gym and seeing how I felt after so many days off. To my surprise I felt very strong! I think the rest helped my muscles recover fully and I was able to maintain or increase my weight on every lift. Hopefully that carries over to my other muscle groups over the course of the next few days. One thing that also increased on my trip was my weight. There was an over abundance of food that I happily ate every free second that I had in Rocky Point. Someone in my family brought a bag full of Skittles and Starburst and I would be surprised if I didn't eat my weight in them. It all went to my gut, so I'm going to have to step it up on cardio the next couple of weeks to get my two-pack back :)

Current Weight: 187 lbs.

Total Distance for Day: 2.1 miles

Hope, Long-term Goals and CF

**The following is my comment on Megan's blog which I encourage you to read so that this post will make a little more sense. I would also encourage you to leave her some kind words and some advice if you have ever found yourself in the same situation. She need some support right now from people who have been in her shoes. Thank you.**

I understand the feeling of being overwhelmed by CF sometimes, but I've got to disagree with you on some of your worries. Now, first let me state that I don't know you, nor your CF, but I do know that some of the things you said aren't necessarily true.

There is no reason that you can't live to a super old age. They are making incredible progress with medicine and research and I am confident that in the next 5-10 years there will be a breakthrough. I understand that you have to be around to receive that new drug or cure, but judging from your lung function and the fact that you're able to exercise, I think that you can plan on being around. Be faithful with your treatments and exercise and you will put yourself in the best position possible.

I personally know more adult CFers that are married than adult CFers that are single. I think too many of us are caught up in this CF in the 1980's or 90's mentality. Sure, some freak things can happen, but if you are faithful in taking care of your disease, your chances of leading a "normal" life go way up. I can only speak from MY experience, but most CFers that I have known that died at an early age were often living risky lifestyles or would totally blow off their treatments. That's not to say that somebody who is not 100% faithful can't die, but we all know that it certainly doesn't hurt to take care of yourself.

I know that it can be scary, I'm not downplaying that, but maybe you can try and fail first before you give up on your hopes and dreams. Trying and failing is 100 times better than not trying at all.

I am always here if you want to bounce some stuff off of me or just need someone to listen. I really hope that you take to heart some of the stuff I have said because I see you as girl with a long, happy and productive life.

Ronnie

6.95 Total Miles for the Week of June 8th (vacation)

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

Attitude and Perception

Here is another great question by a reader:

Well, since you'll be surrounded by family, I'd like to know about the things your parents/family/extended did to support you with your CF as you grew up. Everytime I "meet" a cf'er who is committed to and passionate about maintainting their health/quality of life I wonder "How do I get Emily to grow up like THAT?" So, what do you think they did that helped to form that positive attitude in you. What advice do you have for parents of cf'ers?

Enjoy your trip!

One common question I get is, "How can you ALWAYS be so positive?". Now, before I answer that question let's just get something out of the way: CF sucks. I know that, you know that, we know that, now let's move on. I am a full believer in the power of thoughts and feelings. I know that we as humans can often talk ourselves into things we are not. For example, if you continue to tell yourself all day that you are in a funk, then guess what, you will remain in that funk all day. If you tell somebody else everyday that they are dumb, then chances are, regardless of actual mental ability, they will underperform and feel undervalued. I mean take for example American Idol contestants that REALLY think that they can sing, but are most likely some of the worst singers on earth. Why do they think that? Well, they truly believe that they sound good and those around them haven't said any different. How are they supposed to know what good is if all the feedback they get is that their voice sounds like it belongs on a record to be played for millions? For them, it's all about attitude and perception. Now, does there voice suck? Sure, but if they love to sing and their family enjoys it, who cares? I say, sing until your heart is content.

Let's relate that to my disease Cystic Fibrosis. My whole life, I have been treated just like all of the "healthy" members of my family have been treated. My friends might have known that I "couldn't sing as well as them", but they didn't care. Why didn't they care? Because they saw me "singing" without a care in the world right along side of them. I never seperated myself from the group. I never asked to be treated differently. A lot of this also stemmed from my mom. If you haven't had a chance to read my Mother's Manual for CF post, I strongly encourage you to do so. My attitude towards CF is a reflection of hers. Growing up, my mom made me feel like I was no different than any of my friends or family members. She would say, "Some kids are in wheel chairs, some kids have to take shots, and some kids have to brush their teeth everyday, you Ronnie just have to do your treatments everyday". It was as simple as that. And as a kid, I got it. My treatments were just something I had to do and my mom didn't make a bigger deal out of it. It was very matter a fact. It was also the same way with me being so active. She never told me to take it easy or to stop running cause I was having a coughing fit. She told me to keep running, she told me to keep up with the other kids and not to make excuses, she told me just to be a kid. That same attitude has stuck with me my whole life. I don't make excuses. CF doesn't limit anything I do. It may be tougher for me to get it done or may take longer, but that doesn't mean I CAN'T do it. This of course then translates over to the rest of my family. They feed off of my cues. I take the same bumps and bruises that everybody else does. I then pick myself up off the ground like anybody else does. So to directly answer your question, you treat your daughter the same way you would treat any other child. If you see somebody else treating her differently, you kindly remind them that she is no different than anybody else and should be treated as such. Kids pick up on that kind of stuff. If they get treated differently because of CF, they'll expect that to be that way their whole life. And let me tell you, nobody in the "real world" cares that I have Cystic Fibrosis. Not my teachers, my bosses, the police, landlords, nobody. CF doesn't give me a license to get away with stuff that "normal" people can't. I see too many parents treating there CF kids "with white gloves on" and I hate to say it, but those gloves come off in the real world.

Now, I did encounter people who would "baby me" or treat me different than other family members. If I was treated differently, I understood. I also understood that if I was treated differently, I was partly to blame. It is my responsibility (and yours) to share with my friends and family my attitude towards CF and why they need not pity me or "feel sorry" for me. They see that I don't take that approach myself and I have fully explained the ins and outs of CF. If my friends were to solely rely on the internet for info on CF, they'd probably think that I was supposed to die yesterday. But I'm not a statistic. I can't be defined as a number. I'm Ronnie. I'm my own man apart from CF and believe it or not I do have more control over my life than this crazy "little" disease.