Saturday, June 20, 2009

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.

Friday, June 19, 2009

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.


Thursday, June 18, 2009

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

Wednesday, June 17, 2009

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

Tuesday, June 16, 2009

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.


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

Monday, June 15, 2009

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.