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Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.
8:00am: I slept in this morning and it felt oh so good. I slept like a rock and didn't have to correct my oxygen too many times last night. I naturally woke up at around 6:15, but I forced myself to go back to sleep cause I have been feeling a little worn down lately. I realize how important it is to rest when my body needs it and I know that I need to back off when my body calls for it.
Mandi planned a little day trip for ourselves so we knew that the exercise and walking schedule was going to be thrown off. I wanted to get at least the dog walk in though, so as soon as I rolled out of bed I took Jezzabel for our normal 2.1. I felt really good this morning lung wise and my feet felt great. I was wanting to run today, but I couldn't squeeze it in. We were traveling most of the day, so the morning walk was all that I got in. That, I can deal with, I don't like it, but I can deal with it. The other thing that suffered today were my treatments.
I only managed to get in my morning and night treatment. I brought my travel neb and medicine, but for one excuse or another, I didn't do it. Let me tell you, I could tell throughout the day that I wasn't on top of my treatments. I was much tighter today than normal and just felt like it was harder to get in breaths. The one thing I want to do in all of this is not miss my treatments. I've done really well so far, and today was an anomaly, but I'm still mad at myself for not getting them done. There is just no excuse not to take another 30 minutes out of my day and puff on a nebulizer. I wish I could give you one, but I can't. They would all seem pretty small compared to my desire to take full and deep breaths.
6:00am: Man, this morning was full of coughing! The stuff I was bringing up wasn't as dark as it usually is first thing in the morning, which I guess is good, but I just couldn't shake the tickle that was making me cough. Most of my mucus was a bright yellow, almost as if somebody had used a highlighter and went crazy in my lungs. On my walk I was coughing so much that I had tears running down my face. I'm sure fellow dog walkers must have thought that Jezzabel and I were in a pretty bad fight. All I know is it looks like I built a yellow brick road going from my house around the neighborhood, but of course instead of bricks, I used my spit.
My legs felt good this morning and the heaviness from last night wore off. I did feel a slight shin splint coming on and my left foot started to hurt, but I'm hoping that it is just temporary. I REALLY want to run tomorrow. I've tried to do the right thing by not pounding my foot for a while and I just hope it pays off. My lungs need to get a good run in. They haven't been challenged for a while in the way that a run challenges me. Let's just hope that come tomorrow, I can pull it off.
Total Distance: 2.1 miles Time: 37'59"
3:00pm: Before I headed to the gym today I devised a new workout plan to start with the first of the month. I want to keep my body guessing and hit other small muscle groups. I put together a new workout for my chest and back that I pieced together using some sources on the Internet. The new back work out focuses a lot on lats which is good because I haven't worked them hardly at all over the past couple months. In my new chest work out, I don't even do a regular bench press. I noticed that the bottom portion of my pecs weren't really getting hit so I switched it up to a decline bench. I also added more fly type of motions for both chest and back. Most importantly however, I added push-ups and pull-ups. Those two things are a very simple way to get some sort of shape back and they definitely make you do some deep breathing. If you're thinking about starting a workout, I'd start there. Just do some push-ups when you wake up and before you go to bed. It's all about baby steps. Current Weight: 188 lbs.
5:30pm: It was actually a bit humid out for our walk tonight. Now, just to give you a heads up, I can't stand humidity. Don't get me wrong, I was probably at like 10 percent humidity, but I could feel it. It feels like somebody put a five pound weight on my chest when it's like this outside. Not a huge difference, but I could certainly feel the affects. The walk went well, but I did have some foot pain. I'll have to just make a call tomorrow as to if we attempt to run or not. I really want to run, but I don't want to further any damage. I guess I'll just have to play it by ear. Total Distance: 2.1 miles Time: 36'35"
6:00am: I had another good night of sleep last night, although it took me a little longer than usual to actually fall asleep. I think the reason for this was two-fold: I laid down yesterday on my bed from about 5:30pm to 5:45pm. I know it's not much, but I generally NEVER do that unless it's the weekend. And the second reason would be that I ate pizza last night and it felt like someone poured gasoline on my heart and lit it on fire (thanks a lot Tim and Gina). Oh, not to mention the spaghetti calzone that I also shoved down my pie hole. Tim, I know you read this, next time instead of gummy LifeSavers for dessert, I'm going to bring a bottle of PeptoBismol. Just give me a heads up! I'm of course kidding and just grateful that I get to spend time with my cousin and be confused together by watching LOST...not to mention they feed me. What more could a guy ask for?
So besides waking up this morning with a bloated belly (which I have since taken care of...twice) and burping up the last bit of fire, I felt like a rock star. My lungs felt better this morning than they have for a while and I wasn't coughing up that nasty dark stuff like usual. It started out on the dark yellow side this morning and not dark green. Maybe my TOBI killed off some of the infection? Or maybe I'm not getting up the crap that's way down in there? I can tell you one thing: I'll work like the answer is the latter of the two. Everyday that I wake up, I'm committed to working out with the mentality that if I don't, it could be the last day that I feel good. I never want to be comfortable with how I feel or get complacent. Believe me, it's happened before and I won't let it happen again. The minute you let up on your treatments or exercise is the minute that you open the door to infection. CF is lurking in the shadows waiting for you to slip, and as soon as you do, boom, it seizes the opportunity. I for one always want to stay one step ahead of this disease, who knows, maybe one day I'll be two or three steps ahead.
The walk went well and my feet feel great. If this keeps up I'll for sure be able to run by Saturday. Keep your fingers crossed!
Total Distance: 2.1 miles Time: 37'28"
5:30pm: Mandi and I headed for the gym after she got off of work. Today was legs and shoulders, which is generally a tough day. We ended up doing legs all at once using back to back to back exercises. We didn't lift calves because I think that calf raises are at least partly responsible for my foot pain. I seemed to have more foot pain the days that I would lift on my calves, so I have decided not to lift on them for over a week now. And because I had such terrible shoulder pain the last time I lifted my shoulders, I decided to do exercises today that would strengthen the ligaments and tendons that encapsulate the shoulder socket. I'm hoping that a month or so of doing these type of exercises will help with the pain. Current Weight: 185 lbs.
6:30pm: We took off for a short 1.1 mile walk right after we were done at the gym. Because of the lifts at the gym it felt like I was dragging around a couple of weights that were attached to my hips. Each leg felt like it was moving in slow motion. Our pace was pretty slow and at one point I turned to Mandi and said, "I literally can't get my legs to move any faster". Which she of course replied, "Step it up son!". Isn't she just a ray of sunshine? (I'm kidding Mandi darling, you are just what I need)
6:00am: When my alarm went off this morning I ended up talking to every single one of my body parts. And after doing so, this thought was confirmed: Not one single part of my body wanted to get out of bed this morning. But as I've always said, these are the days that it is MOST important to pull yourself out of bed. Cause if you can get out of the sack when every part of you says no, then how much easier will it be when maybe just half of you says yes? I can't stress that enough. Anybody can wake up early and go hit the pavement when they're fired up to do so, but can you do that when there is no desire inside of you at all? That's what I was facing this morning, so I did the only thing that I know how to do, I pushed through it.
The walk itself started with plenty of coughing. My prayers however were answered in that my junk came up a lot easier this morning. I think that really concentrating yesterday on fully breathing in all of my meds helped as well. There were points at my walk today though that because of the coughing, I couldn't even muster the oxygen to yell at Jezzabel. Sometimes she needs to be reminded that I'm walking her and it's not the other way around. She is improving greatly though and I know that she is trying really hard to please her daddy. My foot felt good this morning, so I'm hoping that continues and maybe I'll be in a position to run this weekend. Man, I would love that.
Total Distance: 2.1 miles Time: 38'21"
Side Note: A little side story here about J Bell. This morning as I was making my breakfast sandwich I had some meat left over that wouldn't have been enough for my sandwich tomorrow. So, I called Jezzabel over and had her sit. I through the piece of turkey at her that flew right past her snout as she chomped at it in mid-air. The piece of meat fell directly on to her back and stuck to her. She was SO confused. She was sniffing around all over the place and just didn't realize the meat was on her back. Eventually, she gave up and went to lay down in her doggy bed looking depressed about the meat that was gone forever. About 2 minutes later she heard some sound and got up to see what it was. With that, the meat fell onto her bed. She then proceeded to lay back down not noticing the turkey that was no more than 9 inches from her face. About 3 minutes later she got up to go and get a sip of water, and finally, when she got back to her bed, she found the slab of meat. Needless to say, it provided a good 7 minutes of entertainment for me this morning.
1:30pm: I was extremely weak at the gym today. I couldn't do some of the same weight that I did last arm day, so it was kind of strange. My body may be just a little fatigued or something. I really need to focus on getting to bed earlier consistently. I've been sleeping better as of late, but maybe those couple nights that my sleep was bad finally caught up to me.
In May, I'll be changing my routine a little bit in order to target other muscle groups. I'll still be doing arms, chest, back, legs, and shoulders, but I'll switch up the lifts. It will also help me to not get in a habit of just going through the motions. I'm looking forward to the change, and I'll make sure to update you guys on how my body adjusts.
My legs were still sore from my workout on them two days ago, but I decided to hop on the stair stepper cause I wanted to work up a sweat. And working up a sweat is exactly what I did. I put it on the same program as the last time, which is called "Fat Burner". Not that I'm trying to burn fat, but I like how it is constantly changing up the resistance during the workout. I did 40 floors again and everything felt real good when I was done. Current Weight: 184lbs
**I recently submitted the following post to a contest being held by the company Nature Made. They were looking for stories about overcoming hardship, helping others, or making a difference in the world. I probably don't qualify, but I thought I'd give it a shot**
Two months ago I came to a fork in my life’s road. I had a choice to make: Continue on my current path, watch my lung function plummet, and die; or make a drastic change to take my life back.
Spending fifty days in the hospital can have many affects on a person. For me, it meant a total reevaluation of my life. I knew that I was going to have to make a change, and I knew that it would have to happen immediately.
I was born in 1980 with Cystic Fibrosis, a chronic illness that is the number one genetic killer of children today. When I was diagnosed at 6-months old, my mother was told my life expectancy was 19 years. This meant I shouldn’t plan on going to college, I shouldn’t expect to have a wife and kids, and I certainly shouldn’t count on living an “ordinary” life. She took that to only mean one thing: Raise me to live an “extraordinary” life.
I began living life at full capacity. I played sports in high school, obtained a college degree, and devoted much of my time to be a blessing to others. In a sense, I felt I needed to pack 90 years of living into 19. I figured the more life I could squeeze into the time I had, the better. This meant pouring my time into activities that I found most rewarding. I began working with various non-profit organizations and trying to be a help to those in need. Over the course of a few years, I co-founded a non-profit clothing and jewelry line that donates its proceeds to various children’s charities; established a not-for-profit coffee shop at a local homeless shelter; and worked hard to raise money and spread awareness for the Cystic Fibrosis Foundation.
My life, however, was turned upside down at the start of 2009. I began coughing up blood; enough of it to send me straight to the Intensive Care Unit for a week, and hold me in the hospital for an additional 40 days. My doctors and nurses were dumb-founded with my drastic decline. My lung function was low enough to put me on the transplant list, and I was unable to get enough oxygen into my system without the aid of a machine. My doctors became visibly concerned after I had been in the hospital for nearly fifty days, and had not yet reached my typical lung function. The doctors said there was not much more they could do. I began to realize that I was at an impasse. As a 29-year-old CFer, 10 years past my expiration date, I needed to take my life into my own hands.
From the moment I exited the hospital doors, I was on a mission. I began a strict routine which consisted of revamping my diet, exercise and treatments. I started excising daily, both lifting weights and running. As for my treatments, I committed to being more faithful with doing them than ever, ensuring that I do four, thirty minute treatments a day. And my diet began consisting of six, smaller, more nutritious meals, and adding several supplements and multivitamins to my daily pill schedule. I wanted to put my body in the best position to succeed.
In the 7 weeks since my release, I have logged more than 150 miles on my legs and 60 hours in the gym. It has paid off. I recently had my lung function re-tested and my lungs are now at over 75% capacity. That’s an increase of over 40% in 2 months! I feel better than I have for a long time, and I’m finally getting my life back.
The most incredible part of my transformation, however, was the unexpected opportunity that stemmed from it. I started this journey to help myself. To help myself, so I could help others. What I didn’t foresee, however, was its immediate potential to help others. I began to blog about my journey on a Web site called runsickboyrun.com. And in 2 short months, I have attracted several other CFers and their families, who have commented that through my story, and watching my improvement, they have been motivated to take on my mission as well. They have committed to fighting their decline and prolonging their lives.
6:00am: So I wasn't as eager to capture the morning like I was yesterday, but I did get a MUCH better night of sleep. I only woke up a couple of times during the night to adjust my oxygen, but other than that I slept like a rock. It did take me a little longer to fall asleep, but by that, I'm talking no more than 15 minutes. Sometimes I have trouble turning off my brain from whatever was consuming me right before I head to bed. Last night, that was my problem. Luckily, it didn't keep me up for too long.
When I woke up, my legs still felt like they weighed 500 lbs. I think I worked them out harder yesterday than I even realized. They felt completely useless last night during my walk and I was afraid that they would be the same during this morning's walk as well. Fortunately, they didn't feel quite as dead and surprisingly I made REALLY good time all things considered. My lungs felt better than yesterday and I was moving a lot up this morning. The first have of my walk I was constantly coughing, but bringing up crap every single time. As usual, it started out pretty dark but lightened up quickly. By the time I was half way through my walk, it was clear. It is getting slightly harder to clear, so I really need to concentrate when inhaling my Pulmozyme. I also need to get my butt in gear and get some HTS. I usually only do it in the hospital cause my insurance won't cover it and it took so long to do at home. With this new compressor though, I really have no excuse.
Total Distance: 2.1 miles Time: 34'03"
3:00pm: At the gym today I lifted my chest and back. It was a very good day as I was able to increase the weight on every lift that I did. I've definitely been able to get stronger much faster than I thought I would, but, with that said, I am still very weak. I'm trying to obtain some mass for backup in case one day I need it to fight off an infection. I've always figured that it's good to have something in the reserves. At least that's always been my excuse for my buddha belly. I was planning on running a little bit at the gym today, but my foot was still sore and I didn't want to push it. I think I'll let it fully recover before I try to run on it again. Current Weight: 188 lbs.
I wasn't able to get another walk in today due to having to leave my house early to get to my Bible study in time. It will mostly be like this on all Tuesday's, which could turn out to be a good rest day for my foot in the upcoming weeks.
6:00am: Alright! Time for a fresh new week. Not that I was feeling fresh this morning, but I'm hoping my energy level starts to pick up. I didn't sleep well last night and woke up about a dozen times or so to mess around with my oxygen tubing. I would wake up with the cannulas blowing into my eyes, around my forehead, or one cannula in my nostril with the other out. My nostrils were also extra dry last night and possibly starting to crack on the inside cause I had a sharp pain inside of my nose every time I woke up. I guess it just comes with the territory. Sometimes you just have to take the good with the bad. The good being that I usually sleep like a rock at night now and I think the o2 has a lot to do with it. The bad being the bloody noses, pain, and oxygen tubing choking me out in the middle of the night. Oh well, gotta keep truckin!
The walk was alright this morning. I was coughing more than normal, but I was getting a lot up and it was clear in color. I still feel kind of tight so I need to really focus this week on opening these airbags up. My foot is becoming the bigger problem. Even with taking the day off yesterday, besides the morning walk, my foot was already in pain this morning. I really need to nip this in the bud, cause it will be tough to run a mile on one foot. I'm not sure what it's going to take, but I'll figure it out. Who knows, maybe by this afternoon it will be fine and dandy? I'll just have to wait and see. It did slow me down a bit on my walk, so it better shape up or I'll just cut it off.
Total Distance: 2.1 miles Time: 39'13"
3:00pm: I finally got to the gym today after a full day of working on some different stuff on the computer. It was legs and shoulder day which is never very fun. Today was no exception. My shoulders hurt from the very first lift, especially my left one. By the time I got to my last lift it hurt to put my arm over my head. I decided not to push it and only lifted the bar for my last lift to hopefully stretch it out a little. I'll be changing up my routine in May, and for my shoulders, this will include lifts that will strengthen the tendons and ligaments. I won't worry about the muscle for a while. It's getting to the point that I think I'm going to start to do damage.
I blasted my legs today. They were feeling pretty weak from the first lift on, but I challenged them on every lift and increased the weight. When I was done with my last leg lift, I literally had to catch myself on a railing when I tried to walk down some stairs. My legs completely gave out. They were absolute jello. It was such a strange sensation and in some kind of sick way, I enjoyed it. Current Weight: 188 lbs.
6:00pm: My legs never recovered from the workout early and by the time it came for Mandi and I to walk/run they still felt like they weighed about 500 pounds. I didn't want to just sit on my butt though, so we decided to do a quick mile. By quick, I mean, just a mile. We didn't walk it faster than normal, and in fact, took our time. The weather was gorgeous and we just enjoyed eachother and conversation. My left foot still feels a bit strained, so I'm really hoping that it recovers soon.
7:00am: I felt really refreshed and ready to hit the ground running this morning. I think my little cat nap helped yesterday coupled with getting to bed early. My lungs are still feeling a little tighter than normal though. My mucus seems to be thicker but I am still able to get it up and out. The good news is that it is mostly clear with it being yellow occasionally. I'll just have to keep my eye on it and make sure that the color doesn't get darker or the crap gets harder to get out. I'll also really focus on doing activities this coming week that really make me deep breath. If my foot holds up, I really want to try and run .6 miles straight. I haven't been running consistently for a while now because of my foot. It seems to feel great for a couple days in a row but then feel strained for four days after that. I may have to look into making some changes with my shoes or inserts.
My walk went well this morning though and my foot had little pain. It was perfect weather without a cloud in the sky and a cool breeze. I must also point out the J Bell is becoming a better and better walkee (is that even a word?). She doesn't try to sniff every 3 feet and responds well to a little tug on the leash. She still has a tendency to pee about 8 times, but I'll continue to work with her on that.
Total Distance: 2.1 miles Time: 36'58"
Mandi and I discussed taking the rest of the day off of working out. One, to rest my foot, and two, to rest her knee. After church we headed to Dukin Donuts for our breakfast sandwich and coffee and then up to her place, well, her parents (sorry Nancy) place to lay out by the pool. Nancy, if you are reading this, we saw 3 dead mice and one dead bird in your pool, not sure what you want to do about that. One of the mice looked like he died after taking a dip in your hot tub, he was just chillin on the ledge in between the tub and pool. First thing I'll do is tell Jezzabel to stop inviting her friends over for pool parties when you're not home and you'll have to tell us where to go from there. Anyways, so far it's been a very nice and relaxing Sunday. Later on, we will head to Wrigley Mansion to listen to some of our friends play with their band. There is a chance that we'll walk later, and if we do, I'll add it to the blog.