Clear Mucus Galore! (Goal Accomplished)

9:00: Man did it feel good to sleep in again! Granted, Jezzabel was at the door whining since six and I woke up about a dozen times between 6am-9am, but I certainly can't complain. Just being able to lay there and rest was much needed. A lot of readers have suggested to me that I either back off on my workouts a little or get more rest. Backing off on my workouts isn't an option, so I guess I'll have to concentrate on getting more sleep. I slept like a rock for the most part last night. I got to be later than usual (about midnight) because I was out with friends at a movie and then a restaurant. So, I may have not gotten more hours of sleep per se, but mentally it sure feels like I did. And generally I only sleep about 7-8 hours a night, so it is a slight step up.

Besides waking up to J Bell's moans and groans, I at one point in the night, woke up to my o2 tube being wrapped around my eyes. It was such a weird sensation when I woke up. I of course was groggy and not sure what was going on, and I couldn't open my eyes normally. It's amazing the places that the tube or the cannula's find themselves through the course of the night. Maybe one day my body will get used to the whole apparatus at night, but I'm hoping I won't need the o2 for that long.

The walk this morning went well. I kept a good pace the whole time and Jezzabel didn't insist on sniffing every square inch of land that we covered. She did however pee at least 9 times. I don't know what it is with her, but she's like a male dog when it comes to that. She'll squat to mark her territory and nothing will come out. She spent a lot of her puppy years with a male dog, so maybe she learned that from him, who knows.

I didn't cough up as much junk as I usually do. First thing in the morning I coughed up my normal darker glop, but it wasn't as big as it has been lately. I guess that's a good thing. After my first cough, everything else was clear. Also, I want to point out, that I'm not that used to having clear mucus. Before this whole exercise thing started my mucus would usually be at least light yellow when I got out of the hospital. It could be coincidence, but then again, maybe it's not. My lungs felt really good this morning and so did my legs. Do I see a new distance record coming today?

Total Distance: 2.1 miles Time: 34'03"

5:30pm: I did it!!!! Did what you ask? Well, you'll have to wait till the end of this entry to find out, let me set it up. Mandi and I took off for our walk planning on doing our 3 mile loop with some running and walking. During the start of most of my walks, my left foot usually hurts. So she said that we could wait to run until my foot felt better and my legs warmed up. My lungs felt great the whole time except for the wind that was constantly swirling around us. I will say though, I could breathe easier in the wind than I could 1 week ago.

So towards the end of our loop Mandi said "We're going to run .5 miles today". I told her that she was crazy and reminded her that I had only run .225 miles straight to this point. She didn't care. Apparently she had 100 percent confidence that I could do it. As I stood on the street corner looking at our destination, I'll be honest, I was thinking "I REALLY want to do this, I just don't think that it is physically possible at this point". That's when Mandi said three things that really changed my way of thinking, she said:

1) Running isn't supposed to be comfortable
2) It will never hurt this bad again
3) You are supposed to get out of breath when you run, so don't worry about that

After letting those comments sink in (and coughing up a little bit of mucus), I was ready to give it a shot. Right before we took off she said, "If you're feeling out of breath, just slow down your pace a little until you get it back". This advice ended up being the life saver.

And we were off. I started at a decent pace and felt really good for the first .2 miles, that is when I hit my first wall. I slowed down and pushed through it and in no time I was back on pace. I hit another wall at about .4 miles which caused me to slow my pace again. I never got back to my previous pace, but I never stopped running! It did feel like forever, but when I finally reached .5 miles, I was incredibly stoked. Don't get me wrong, you wouldn't have known it at the time. I was clinging on to some metal stair rails trying to extend my lungs so I could catch my breath. Mandi showed all of the excitement for me. She was very happy which showed when she jumped up and down with a school girl giggle.

I now only have one problem: Running .5 miles straight was April's goal, what in the world am I going to do now?

Total Distance: 3.0 miles Time: 45'32"

6:30pm: Today was arm day at the gym which of course I love. I mean, who doesn't love "curls for the girls"? We really pushed it today by doing alternating sets of triceps and biceps with no break in between. Towards the end of the workout it felt like I was curling 30 lbs. when I was taking a drink from my water bottle. I was able to increase the weight or reps on every exercise but 2. They were both towards the end of the workout, so I think my arms were pretty fatigued. I got a really good pump today and again, I was sweating like a pig. I've noticed more sweat since I started taking Omega Oils and Vitamin C. I wonder if there is any correlation? Current Weight: 187lbs.

Total Distance Run/Walk for Day: 5.1 miles

Switching It Up

7:00am: I had to sleep in a little bit this morning. I've been dragging a little bit during the last couple of days, so I wanted to give my body some extra rest. I was able to get in bed by 10pm last night and slept through the night with the exception of adjusting my o2 cord a couple of times (or unraveling it off my forehead). I definitely felt more refreshed this morning than I have for a while.

First thing I did this morning was cough up a, what felt like, golf ball sized glob of goo. It was pretty thinned out, which was nice, but it was also yellow in color. It looks like Pulmozyme is doing it's job, now TOBI just need to step it up and kill whatever little infection is going on. My lung pain is gone and they really feel open this morning. I also changed up the routine for today just to keep my body guessing. I woke up, ate, did my treatments, and then went for a walk. I'm a big believer in your body getting used to something and then just going into auto pilot. I don't want that to happen. I always want my body, and my lungs, to be working hard and pushing through tough situations. I'm sure there is no evidence that this is an effective strategy, but if I believe it, it must be so...right?

I can tell you that it may just be a coincidence or this change really did do something this morning. I coughed up a ton of crap before I even got to my walk. It didn't feel like that little surface crap either, it felt like it was coming from way down deep. Stuff that's been sitting there for a while just waiting for the opportune time to show it's ugly slimey face. I think only fellow CFers know the feeling of relief after getting up that much garbage. At least for me, my lungs feel more open, they feel lighter, and it feels like I can take in deeper breaths.


9:30am: The temperature difference between 6am and 9am is quite amazing. Not only could I tell by the sweat pouring off of my body, but also because there were times that J Bell's tongue was hanging 9 inches out of her mouth. I decided to go a little longer than usual on my morning walk since I got to sleep in this morning.


On my walk, I was still bringing up some stuff. It wasn't as much as earlier and it was clear. I walked at a pretty fast pace and tried to keep Jezzabel from stopping to sniff, poop, or pee every 4 feet. My left foot hurt in the beginning of the walk, but was completely pain free by the time I was half way done. My feet and lungs were feeling so good in fact, that I ended up running a stretch of about .2 miles! I'll have to go back and see exactly how long it was, but I'm guessing that I'm pretty close. I felt REALLY good during the run and recovered faster than I normally do. Maybe I'll start to gain some distance faster than I originally thought I would.


Total Distance: 3.0 miles Time: 48'38"

5:00pm: Mandi and I walked to the gym today to sneak in some extra mileage on our legs. We weren't able to get another run/walk in because we were short on time. A big group of us friends were getting together to watch a movie. We actually picked the 7:05pm showing because we're a bunch of old geezers...ok, well just I am, but I need to get to bed early. Anyway, the gym was good and I added a couple more lifts today. I was sweating like crazy again. Me sweating like a pig might have something to do with starting vitamin C and Super Omega oils the other day. Ever since I started with them, I get soaking wet whenever I work out or run. I think it's a good thing though, it makes me feel like I'm working extra hard. I was able to add weight or reps to almost every lift today and overall I felt really strong. It was nice to have Mandi there to yell at me too. I think her getting in my face and telling me that I'm a poor excuse for a man really helps....just kidding.

Total Distance: .8 miles

Total Distance Run/Walked for Day: 3.8 miles

What's With This Lung Pain?

6:00am: So like an idiot last night, I didn't get to bed at my normal time, so I was super dragging this morning. I went to my cousin's house last night to watch LOST and eat some homemade soup, but by the time I got home and did all of my treatments, it was 11:30pm. I never thought I'd say this, but 11:30 is late for me. I remember the good ol' days when I wouldn't think about going to bed before midnight. Oh when I was young.

I added TOBI to my treatment schedule this month, so I need to take that into account as far as time for treatments goes. I'd say that TOBI adds at least 20 minutes to treatment time. I better adjust accordingly cause I can't take many more nights of hitting the sack past 11pm. I slept like a rock, don't get me wrong, I just think it's a time issue.

My lungs have been a little sore the last couple days. And by couple, I mean yesterday and today. I started TOBI yesterday, I wonder if there is any correlation. I also started bleaching my nebs for the first time ever yesterday, can that cause lung pain? It's that kind of dull pain all over that becomes a sharp pain once in a while at a specific location. I don't really notice it more when doing certain activities, so I don't think it's muscular. But who knows, it could be from all of the coughing or from my lungs opening up more.

On the walk this morning, my legs felt really good. I was able to keep up a fast pace, with the exception of J Bell taking 3 dumps. I just don't get it. Why doesn't she just let it all fly in one big pile. Any dog whisperers out there know why she would want to hold it? Or can dogs get IBS? All I know is she slows down my pace, so she better get it straightened out with her doggy doctor. I wouldn't want to leave her behind. But I will do what I have to do in order to beat the clock. If you're reading this Jezzabel, I'm serious, get it down to one poop pronto!

My legs felt stellar this morning...my lungs? Well, I was coughing constantly for at least the first .2 miles. Good news: I brought up a ton of either yellow or clear stuff. Bad news: I was desperately trying not to barf up my coffee while tears were rolling down my cheeks. I guess that's not really "bad news", it's pretty much just par for the course. I cough with such power that I have to expect to get those other reactions from my body. The other option would be to not cough. That however would be suicide. If I'm not coughing, I'm dying. And if I'm dying, then I'm....well, I guess it would have to end there.

Total Distance: 2.1 miles Time: 35'56"

3:00pm: I've felt really tired the last two days and going to the gym was not something I was looking forward to. Especially because it was leg and shoulder day AND I was adding a lift to each muscle group. Man, it sounded tiring. And, it was. I was yawning and just felt like I was really dragging. I did however shorten my rest periods in between reps, so I was sweating like a pig. Overall, I got a decent workout in. I didn't get the "pump" I'm used to getting, but I guess I can't expect to have that every time. Sometimes you just have off days and I think today was that day for me.

I was able to increase the weight for a couple of my lifts, but most of them stayed at the same weight. Like an idiot, I added squats to my leg day and I am now paying for it. When I was done squatting, I would have sworn that my butt got detached from the top of my hamstrings. It felt like I tore something near the bottom of my butt. I of course didn't, it's just another example of how out of shape I am. I will say though, if I keep the squats up, I may have a booty by the summertime. Can anyone say man thong? Current Weight: 189 lbs.

6:00pm: Mandi and I took it easy on our walk today. We were planning on getting a run/walk in, but we got caught up in conversation and my feet started to give me problems. I'm thinking my feet will be fine for a run tomorrow but who knows. I really have to look into getting a street bike. That way, I could still get some really good cardio even if my feet are giving me problems.

Mandi and I mostly talked about our frustrations with the insurance issue. She feels a lot of pressure to get a job with good benefits if we're thinking long term. I just want her to be happy and work at a job she enjoys. I've been calling around and finding out what our options are, and they seem to get worse with every phone call I make. I will say though, Mandi has been a trooper throughout this whole process and has really gone above and beyond of what any girlfriend should be doing. I literally could not have a better lady. Plain and simple.

Total Distance: 3.0 miles Time: 58'36"

Total Distance Walked for Day: 5.1 miles

Jezzabel the Dragon

6:00am: I didn't think that I would feel yesterday's workout and run so soon! When my alarm went off this morning, I thought that somebody had come into my room last night and tied sandbags around each leg. They must weigh more today than yesterday. I wouldn't be surprised at all if I weigh over 300 lbs. right now. Usually it takes a couple of days for the tiredness and soreness to kick in, but it wasted no time this morning. Is it possible that my body is playing an April Fool's joke on itself? I sure hope so.

I was actually more awake this morning than I have been the last couple of mornings. I have no idea why that is. I got to bed later than usual and it felt like I got a pretty good night's sleep as usual. I was up rather quickly and excited to get to my walk. There was somebody else in my life excited to get to the walk too. Any idea who that would be? If you guessed Jezzabel, you would be correct. She was laying in front of my closed door in the hallway and periodically it would sound as if a dragon was breathing fire into my room. She tends to get all huffy and puffy like a little child if things don't go her way at the exact moment she wants things done. I'm pretty sure I could have sat by the door and felt the air that was being blasted out of her nostrils.

Side Note: Speaking of nostrils, a new routine of mine is to pick my nose in the morning. I'm sure you were just dying to know that. But seriously, it's amazing what some o2 blowing in your nose all night can create. I pull out some honkers from my very own "booger mine" that would probably make the common man a bit jealous.

My legs loosened up very early on my walk. I was however coughing a lot more than normal, but only bringing up clear stuff. The only dark crap I brought up was from my very first cough when I got out of bed. I coughed to the point of a dry heave and I had tears running down my face. I wonder what fellow walkers are thinking when they see me in that state? If only I could get into their mind. Anyway, I had a couple of leash malfunctions on the walk, so my timer got all messed up. I think I was slower than yesterday though, so I'll make sure to step it up tomorrow.

Total Distance: 2.1 miles Time: I screwed up again


11:00am: I headed off to the gym to do arms (with an apple in hand) and was excited about adding a lift to each muscle group. I added concentration curls to biceps, and a rope over the head cable extension thingy to triceps. Let me tell you, my arms could tell that they only had two days rest and not their traditional three. I was struggling at the gym today. I added weight to only one lift and reps to two others. There were lifts that were easy two days ago that I couldn't finish today. It was rough.


I muscled (pun intended) through it though and it ended up being a real good work out. I was sweating the whole time because I was only taking minute breaks in between sets. By the time I
got to my 4th lift on each muscle, I was pretty worn down. I did however have enough energy to do Mandi's ab routine which consists of 200 crunches in various positions. By the time it was all said and done, I couldn't wait to get back home and just relax on my vest. I have some errands to run and Mandi and I will do a run/walk when she gets off, so the relaxation won't last long. Boo Hoo. Current Weight: 188 lbs.

6:00pm: Since we ran so hard yesterday, Mandi and I took it easy on our walk tonight. We took a new route so we could enjoy looking at houses we had never seen before. We spent most of the time talking about medical insurance and how frustrating it all can be. It really seems that if you're disabled in this country, the government wants you to be poor. I won't even get in to the whole situation, but it feels like I'm stuck between a rock and a hard place. I'd like to spread my wings a little bit, but our whole system makes it pretty tough to do.

Ok, enough of that. Our walk went really well and it was nice not racing against the clock. I did time it, but we weren't concerned with what the time was. We were just enjoying each others company and talking about what we would do to each house that we passed. We held hands the whole two miles. It was just what we needed.

Total Distance: 2.0 miles Time: 40'41"

Total Distance Walked for Day: 4.1 miles

My Goal for the Month of April

Well, I met my goal for the month of March, which was to workout 6 of 7 days a week.

Time for a new goal: I will run .5 miles straight, by the end of the month.

Wish me luck!!!

Don't Knock It, Till You've Tried It

6:00am: I really wish I could name for you one of my body parts that was excited about getting up this morning. Wait, just a second, ahhhh, nope, still got nothing. I don't know what my deal was. I had to start talking to myself in the 3rd person just to set my feet on the ground. "Come on Ron, you pansy. Get up and get the day started" is what kept shouting in my head. I'm not sure why I was so tired. I got to bed at the right time last night (a little after 10pm) and I wasn't waking up multiple times during the night. One thing I remember though is that the times I did wake up, it was due to coughing. I think a lot of the times I cough and don't wake up, but never really fall into a deep sleep. This must have been the case last night. When my alarm went off this morning, I thought that maybe Jezzabel played a practical joke on me and messed with the clock. There was no way I just got 8 hours of sleep. But, in fact, I did, now it's up to me to just get out of my comfortable cloud and hit the road.

I must have been hacking last night. When I started my walk I was coughing with every step I took. My mucus was clear though right from the beginning. My first cough of the morning, while I was still laying in bed, did produce some color, but it wasn't too bad. That's pretty customary for me though. A big ol glob of crap first thing in the morning. Do you fellow CFers out there experience the same thing? I'm guessing that it's just from laying flat all night and not getting the stuff up and out for 8 hours. It must just pool together in our lungs until we force it out of there. So anyway, on my walk, I was coughing and making all of those after cough squeals that I'm sure a lot of you are familiar with. The squeals can range from me suppressing the cough slightly so I don't throw up, to dry heaving, to a high whistling kind of noise that honestly, I can't tell you where it's from. My mom tells me that sometimes I sound like a tea pot when I sleep. So I'm guessing that the crazy high pitched whistle noise is coming from that same region. I need her to tape me while I sleep and post it on here so you guys can hear what she hears. Maybe you could just start calling me "The Little Engine That Could", man, that should really be a children's book. Brilliant, I know.

Ok, so everything else about the walk felt pretty good. My feet were slightly sore in the very beginning but felt fine about half way through. I'm still getting used to the ortho inserts and I really hope that process is done sooner rather than later. I don't like the feeling of stepping on smooth boulders when I walk. That's the best way that I can describe it. It's as if somebody is sliding river rocks beneath my arches in the first half of my morning walk. Other than that, my legs felt great and my lungs felt great after I worked a bunch of the garbage out. J Bell was a little bit of a brat this morning, but she only pooped once for a change. She did however pee about 11 times in which half the time I would yank on her leash mid stream and she would finish while taking her first couple of steps. Don't call PETA on me, it probably sounds worse than it is. She is my little princess and besides shoving bamboo shoots under her finger nails (toe nails?, do dogs just have 20 toes?), she is treated as such.

Today is going to be a very busy day. I have to make up for yesterday by going to the gym twice. I'll go once on my own and once with Mandi when she gets off of work. We are also planning on a run/walk later plus running between sets at the gym. I'll make sure to fill you guys in on all of the details. That is, if I live through the day....

Total Distance: 2.1 miles Time: 35'53"

12:00pm: So I went to the first of my two gym sessions for today. On the agenda, legs and shoulders. I probably should have taken it easy on my legs considering that Mandi and I are going back to the gym AND a run/walk before that. Unfortunately for me, that's not in my personality. I have one gear: Balls to the wall. Pardon my analogy there, and to be honest I have no clue where it comes from, but my coaches used to always stress it. It doesn't matter, they said, if you do it wrong, just make sure you are doing it balls to the wall. I was going to jot down my best guess as to what it means, but I literally have no clue. Any suggestions out there? Let's see who can get really creative!

So anyway, I absolutely blasted my legs. I went all out on them and increased the weight on every single lift. For those who are curious, I do leg extensions, ham curls, and calf raises. Starting tomorrow I'll be adding a lift to all of my muscles. I had to prove to myself first that I could make it to the gym consistently before I really started pushing it. Mission Accomplished. April is a whole new month, and that calls for changing some things. I need to set some new goals and push myself more than I did in March. By the way, if you ever have a challenge for me, or a goal you think I should set, send it my way. I love challenges. If I think it's possible, I'll try it. And generally, if I try it, I'll do it. Or I'll die trying, whichever comes first. Bring it on!My shoulders were a bit sore but I was able to increase the weight or reps on all the lifts but one. They actually felt better today than they have at any other time during the last month though. We're moving in the right direction. After the gym it was my normal protein shake and treatments...and maybe I snuck in a bowl of Lucky Charms, or three. Current Weight: 186.5 lbs.

5:45pm: Mandi absolutely kicked my butt for the rest of the day. At times I hated her for it, but I couldn't do anything about it while gasping for air. We went on our run/walk when she got off of work...oh, AFTER she did her 3 mile run. I hate her. Anyway, we started off at a really fast pace because Mandi said that we should be able to do our 3 miles in 45 minutes. I told her that she was crazy, but I would certainly give it my best shot. She wasn't kidding about the time and she was going to do anything in her power to make sure we made it, even if that included murdering my lungs. After about a .2 mile brisk walk, she picked a spot up ahead for us to run to. Let's just say that mid-run she said, "I didn't realize how far it was". The spot ended up being .225 miles away. If you'll remember, the furthest that I have run in one clip is about .15 miles. Well, despite really feeling like I was breaking down towards the end, I made it!

I was really pulling for air when we finally reached our spot. I did however recover MUCH faster than what it took after any of my other "long" runs. My legs felt good for the most part, but they were definitely giving me more problems than my feet. Which for me, is a very good thing. I had some ankle and knee pain throughout the run/walk, but all in all it was very positive. My left shin splint creeped in at the end, but it didn't hurt as bad as it has the last couple of journeys. We did a couple more "long" runs and Mandi figures that we ran close to a mile in total. I'm so thankful for how hard she pushes me and I know, with her help, I'll be able to meet, and exceed, my goals.

Total Distance: 3.0 miles Time: 46'00" (One minute over our goal. I'll get it next time!!!)

7:00pm: After driving our run/walk route, it was off to the gym. We had some chest and back to get to and we really wanted to motor through it. We were looking at treating this more like a cardio workout by cutting the time between sets to practically nothing. We ended up doing just that, but for some reason I felt really really strong tonight. I was adding 15 pounds to some of my lifts and really challenging myself tonight. I don't know if it was the presence of Mandi or what, but I was throwing some weight around. It wasn't as embarrassing as the past when Mandi and I would lift basically the same weight. So like I said, we really flew through the workout tonight because it was my second time there today AND we couldn't wait to get our American Idol fix. Want a strange, and sad, fact about me? Probably not, but I'll tell you anyways. In all of the American Idol seasons to date, I've missed ONE episode. I know, pathetic. I will totally understand when my readership plummets after reading this post. Only one thing, don't knock it till you've tried it.Current Weight: 186.5 lbs.

Total Distance Run/Walked for Day: 5.1 miles

Out of Sorts

7:00am: I woke up a little later than usual because of a slight change in the morning routine today. I'm taking my grandma out to breakfast with Mandi, so I wasn't going to be on my same eating schedule. Of course I got crap from my mom (jokingly of course), she said, "I thought you were getting up every morning at 6?". I feel guilty enough for sleeping in already, thanks for that mother. I actually love it though. It feels like everybody around me is really diving in to this "new" me and helping to hold me accountable. Mandi is my little drill sergeant while my mom is that little "angel" on my shoulder politely reminding me to follow through with what I said I was going to do. They both love me and have my best interests at heart, so I have no problem with anything they say or do to me. Just don't get too crazy with it ladies!

Mandi and I did a different loop than normal to check out some new neighborhoods. We love looking at houses and discussing the changes that we would make to them. We have pretty different styles when it comes to houses though. She always jokes that I just like shoe boxes, while I always joke that she only likes mansions. It makes sense with me being in Arizona my whole life and her growing up in the Midwest. In the Midwest you can get a lot more house for the same amount of money to buy a "shoe box" out here. It's not the size that bothers her though, it's the shape. Many homes in the area I grew up are ranch style houses. For the most part, they are long and flat. That's the kind of house that I have always been drawn to. Mandi grew up around multi-level houses with large lots. I think that the AZ style of house is starting to grow on her a bit and today she figured out that it is more about landscaping with her. She's not into the dirt and rocks in front of a house. I agree with that. I think houses look much nicer if there is a little grass in front. My opinion may change though if I'm the one mowing that grass.

Back to my walk. I was coughing a ton this morning and moving a truckload of stuff up. I was coughing so deep and hard that I had tears rolling down my cheeks. There were times that I thought for sure I was going to lose my dinner. I didn't do the best of jobs sticking to my "diet" last night. Don't get me wrong, my diet has nothing to do with the kinds of food I eat, but everything to do with how much I eat. It has nothing to do with losing weight either. I just hate feeling stuffed and bloated and I have found that with smaller meals eaten throughout the day, that I feel much better. Well last night my mom got us all Peter Piper Pizza. Get out of my face diet. I love me some PPP. I ended up having 6 slices and I'm pretty sure that I only actually chewed 2 of them. If pizza didn't make me feel so bloated, I would have it for every meal for the rest of my life. And not just any pizza, Peter Piper pepperoni pizza with extra sauce.

I sure am getting sidetracked this morning, and now, I'm suddenly hungry. The walk felt really good and definitely opened me up for my treatments. My arches hurt at first but then started to feel better about half way through. It was nice to switch it up and take a look at different scenery. The only problem with something new is that J Bell turns back into Sniffy McSnifferstein and decides to stop every 3 feet. I do a lot more leash yanking when we choose a new loop. She only pooped once which was a refreshing change...and speaking of poop, I gotta go. Bye bye.

Total Distance: 2.4 miles Time: 42'47"

So the rest of the day was kind of out of the ordinary too and I ended up not getting another walk or run in. I also have to go to the gym twice tomorrow or workout 4 muscle groups to make up for today. Mandi had a stressful day of job interview stuff, so I thought that it would be much more important for her to be able to unwind and decompress. I'll be back in the saddle tomorrow ready to go!

Total Distance Walked for Day: 2.4 miles

My Cystic Fibrosis "Circle of Life"

So what does my typical day look like? The best answer is: There is no typical day. Relying on typical is hard when battling this illness. The thing to keep in mind is that there are over 1200 mutations of the disease. That means there are over 1200 different ways in which CF can affect somebody. If you add-in other genetic traits as well as environments, you’re literally talking about millions of ways. So remember, this is MY average day. There are some CFers that have my battles times 100 and some CFers that have no complications besides the fact that they can’t father children. CF comes in all shapes and sizes, but here is what I would consider to be my “typical” day.

I never know how I’m going to feel in the morning. Often times, I cough all night long or make wheezing sounds (so I’m told). When this happens I never fall into a really deep sleep. Without the help of a sleeping med, I usually feel like I haven’t slept the night before. With a sleeping med, I have to devote a certain number of hours to sleep, or I feel groggy in the morning. Therefore, if I can’t take the med and devote those hours, I generally feel like I haven’t slept (or slept very little) that night. I then of course feel tired and sluggish throughout the day.

With that said, the first thing I do in the morning is either workout or my treatments. If I’m able to breathe without doing my treatments first, I like to open up my lungs prior to my treatments with exercise. After exercise, I do my treatments. Treatments include aerosolized medication, oral pills and manual airway clearance. The treatments can vary, but they always include, a medicine (aerosolized albuterol and atrovent) to open my airways and decrease inflammation, a medicine (aerosolized Pulmozyme) to thin out the mucus, and a device that I wear to shake my lungs and try to move the mucus around and out. There are times that I additionally do a medicine (aerosolized TOBI) that is an antibiotic to kill infection. I also take about 40 pills a day. Most of these pills are digestive enzymes (Ultrase MT 20) and the others are vitamins, antibiotics (Azithromycin), and an acid neutralizer (Protonix).

After my treatments I usually take a shower. I only mention this because often times while in the shower, I vomit. Depending how much coughing I did the night before, I will generally vomit out all of the mucus I coughed up during the night. I feel nauseated most mornings. If I ate late the night before, you guessed it, that comes up as well. Most CFers have a malfunctioning digestive system. This causes nausea, bloating, irregular stools, and an inability to get the proper nutrition out of the food we eat. You can’t tell by looking at me, but many CFers struggle to maintain a proper weight. I have been blessed to be able to call myself “obese”.

After the shower, it’s on to the activities of the day. For me, that includes blogging, volunteering, speaking engagements, and trying to be a blessing to others. There are times that I find it very hard to get out of the house and get going. CF forces me find a balance between taking care of myself and “living life”. There is no doubt, that if I did 10 treatments a day, I would be healthier. But what kind of life is that? Treatments require sitting down and being still. Would anybody choose to commit themselves to 8-10 hours of their day to treatments? Making yourself in some regards “a prisoner in your own home”. I know I wouldn’t. I do, however, try and commit myself to at least 3 treatments a day and usually 4. This is what my doctors recommend, so that is what I try to do. Do I always do three a day? Of course not. But writing for RunSickboyRun.com has also provided me less of an excuse not to do my treatments. I'm already sitting down typing; I might as well throw on my vest and stick a nebulizer in my mouth. As I get older, my maturity and my health tell me how important it is to be faithful with treatments.

I live my life to the fullest. When I’m not doing treatments, I try to be active. This affects my health in a positive way as well. The more I move, the more I cough. The more I cough, the more my mucus moves around. The more my mucus moves around, the more easily I can get it out of my lungs. The less that’s in my lungs, the less of a chance of inflammation and infection. Less inflammation and infection, the easier it is to breathe. The easier to breathe, the better I feel. Ah, the “CF Circle of Life”. It sounds easy doesn’t it? I wish it were that easy.

My CF "Circle of Life" also includes hospitalizations every 3-4 months. I am hospitalized 3-4 weeks at a time. I stay in the hospital about 80 days a year. That’s about 20% of my (and your) year. I don’t say this for pity. I never seek pity. I say this simply as a dose of my reality. I’ve never met someone who likes being in the hospital. I can’t say that I hate it because I know I need it. I want to continue to live an active life and sometimes that requires me to be "locked up in the joint". Every time I get out of the hospital I am at my peak in lung function (With the exception being my last stay, which I will get into at a later time). Over the course of the next three or four months my lung function makes a steady decline. It declines until I put a halt to it. The hospital is that halt.

See, I can’t live my life without taking good breaths. Sure, I can lie around and do activities that don’t require a whole lot of deep breathing. But that’s not what I was created to do. I was created to interact. I was created to bless others. I was created to stare CF in the face and tell him that today won’t be the day I am defeated. I make CF plan around my life, I don’t make plans around CF. For me, CF is a being that I am in constant competition with. I guarantee you this, I will win. I will beat CF. There is no doubt in my mind. The day I was born I signed a lease, provided by God, to live my life. At some point my lease will expire, but I guarantee I will go way over on the allotted miles.

Yellow Junk Road

7:00am: I actually woke up at about 6 this morning, but I forced my myself to stay in bed longer. I slept well with the exception of having to unwrap my o2 cord from around my forehead a couple times throughout the night. I had a slight headache when I woke up, so maybe my SATs were dropping when the oxygen was going into my forehead skin instead of into my nostrils. It could have been just the pressure from the cord as well that gave me the headache. I was also a bit tight this morning and started it out by hoping in the shower to try and relieve my head and get some junk up. I was moving a lot of yellow crap out in the shower and of course the bloody boogers came when I blew my nose. A shower first thing in the morning can turn into quite a show.

Jezzabel was REALLY fired up about her walk this morning. I don't know if she realized that she got cheated out of a walk yesterday, but she was standing by my bedroom door when I opened it. She was looking up and it was if she was saying, "Don't forget about me again daddy!". She had a huge smile on her face and was wagging her tail so hard that I thought she was going to chip the paint off of the walls. This morning was perfect for a walk. The air was crisp yet the sun felt strong, so it was a perfect balance between hot and cold. When we first started, I was coughing quite a bit and actually had to concentrate on holding down last night's dinner. After securing the dinner in my stomach, I coughed away and moved up more junk. By this time it was clear and when I was done with all of the hacking, my lungs felt better and much more open. That's one thing I really love about getting up early and going for these walks, it really opens me up and feels like I'm getting in an extra treatment.

My left foot was slightly sore in the beginning of the walk, but definitely got better about half way through. I'm not sure if I'm still getting used to the ortho insert or I did slight damage to a muscle or tendon in there. A runner friend of mine said it took her feet at least 1 week to get used to her inserts. I'm really hoping that is what it is, because I don't want to take more time off of running if I don't have to. Much more of just this walking crap and I'm going to have to change the name of this blog.

Total Distance: 2.1 miles Time: 35'33" ( I believe that is the best time yet)

2:00pm: Mandi and I headed to the gym to work out our arms after our Dunkin Donuts had digested. Mandi continued her theme by showing me up at the gym and making me look like a poor excuse of a man. While I was huffing and puffing in between reps, she was busy doing abs 3 feet away from me. When she was done with her abs, she would jump right into her arms again. I spent the day just trying to keep her pace and it kicks my butt. I was able to increase my weight or my reps on every lift, so I'm happy about that.

We also ran on the treadmill between every lift which really gives me a good workout. It's also nice to have Mandi around for that cause she really pushes me. I usually just run 2 minutes at a 4 mile per hour pace, but she had me bump it up and increase it every time. She thought it would actually be easier for me to run at a faster pace. As always, she was right on. It was actually easier to run a little faster and it challenged my lungs more. By the end of our time at the gym, I was running 2 minutes at a 6 mile per hour pace! I ran for .2 miles straight and my legs and lungs could have gone longer. My lungs were definitely in worse shape than my legs and I was taking big ol' breaths in at the end of 2 minutes. My feet didn't hurt at all and I didn't feel any shin splints. I think taking it easy for a couple of days really paid off, so I'm hoping to get back into the full routine next week. Current Weight: 187lbs.

Total Distance: 1.03 miles

Total Distance Walked/Run for Day: 3.13 miles