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!!!!