Sunday, November 30, 2008

Day 15

Short update today! I can't believe I've been exercising for two full weeks now.

It was a really nice out this morning so I took a speed walk around the neighborhood. Ended up doing 2.6 miles in 40 minutes. I'm feeling pretty good considering this is cold and flu season. I hope everyone can keep their yucky germs to themselves!

Saturday, November 29, 2008

Elliptical Workout - Day 14

Goal: 30 minutes (fast or slow...) on the elliptical machine

Yay! Yippee! Wahoo! I got an elliptical machine at home!

One of my friends here in Elk Grove had an OrbiTrek collecting dust in her garage so I asked Paul if he could pick it up for me this morning. Now the Orbitrek is kinda like the Ford Pinto of Elliptical machines. But I am THRILLED to have it for FREE in my home! Having never used a $4,000 elliptical at the gym, this model that runs about $200 is just fine for me at this time.

We dusted it off and set it up in my bedroom (right in front of the TV). I got to jump on it just now and whew! What a workout for the old quads! It felt good but I felt like my legs got really tired long before I was huffing and puffing enough to cough any crap out of my lungs. I think I have a new plan to walk for a couple miles every other day around the block and do the elliptical workout on the days that I don't walk outside. No more running! Not anytime soon anyway. My right knee is still in a moderate amount of pain when I try and run. Stupid knees!

Friday, November 28, 2008

A Long Walk

My knees are still hurting so I decided not to push it today, after taking a whole day off exercising yesterday! My hamstrings are also killing me. I tried stretching them out and going for a walk. I walked 2.6 miles in 40 minutes. Woot Woot! But then I had to soak in a hot hot bath just so I didn't look like a 90 year old shuffling around out in public as we went out to dinner tonight. I celebrated my walk with a nice warm Pizookie for dessert. Yum Yum!

A friend of mine offered to loan me her eliptical machine. I'm going to take her up on that, because this pounding the pavement thing doesn't seem to be doing my body good. I really miss the days I ran from the street hockey court across the street to the soccer field for another game. Ah.. to be 20 again!

Wednesday, November 26, 2008

Day 11 - So Many Words

There are so many words that describe how I feel at this moment.


...just to name a few.

So I decided to push on, and go for the run today. Two steps folks. That's all I could muster as my knees screamed with pain. Ok, no running. I'll just walk briskly. As with my little experiment last week we all know I get the route done in just the same amount of time anyway. 2 miles and 32 minutes today. The pain is not so bad while walking. But I'm hurting right now. If I could amputate just above the knee right now... oh how sweet that would be.

Now if this was muscle hurt I wouldn't be complaining too much. Muscle hurt goes away. I'm very familiar with muscle hurt. You can't be an intramural hockey/soccer/water polo all star without having experienced muscle hurt. But this is like tendon or bone hurt. I'm really not sure which. It's very acute and sharp and only really when I run, or bend in funny yoga positions. I might still do the walk tomorrow, or I might take a day off. I did not have this kind of pain last week so I hope it's just a fluke. For now I'm going to go swallow a whole bunch of motrin. Sadly, it's the most potent thing in my medicine cabinet.

Tuesday, November 25, 2008

Back on the Horse - Day 10

After 4 days off, I got back in the saddle today. I was on vacation in San Diego and although we did do some walking, even a few miles, it wasn't much of a workout but it was exercise!

Of course today I have the twins with me, so it was a little bit different. I put them on their bikes and we set off on my 2 mile course. They were really dragging, and I thought they were slowing me down, but we ended up making it back home in 33 minutes. We took a small shortcut (skipped going through the park, so as not to make them jealous of all the kids playing)

As for me, I felt pretty good, but my knees were killing me. Like if you have one bum knee, you can always kinda limp, but when you have two bum knees, it's hard to limp on one, and then the other. It hurt pretty bad, but I just kept going hoping that maybe they were stiff from not running all weekend. Then I thought maybe they were sore from actually running last week.

I have figured out that I can jog longer if I don't go full bore the whole time. So I jogged quite a bit on our route today. Probably at least 8 minutes worth. I had the stop watch with me, but I was a little distracted crossing all the streets with the kids on their bikes, and then their complaining because they were tired. I probably looked like a crazy jogging hitch hiker because I told Tom there were going to be signals. Thumbs up if its safe to cross the road. And then we had a signal for "stay put, do not cross." So I'd jog out into the middle of the road with my thumbs up and kind jog in place until they were safely across together. It worked out well. I made these hand signals for them because I knew I would be too out of breath to actually speak to them. They listened really well!

I'm a little frustrated that I don't feel like I can run any longer than when I first started running last week. I'll keep at it, but I'm telling ya now, if I don't have results in six months, I'M QUITTING!

Thursday, November 20, 2008

Day 5 - A Run In the Park

Today didn't go exactly as planned. The twins don't have school on Thursdays and I didn't have anyone to watch them this morning, so I decided I would run laps around the park while they played. Well that went over like a lead balloon. They wanted to run with me! Only they didn't want to run, they wanted to walk because they got tired. But they weren't walking fast enough for me because I wasn't completely out of breath. We finally worked out a happy medium where I ran small laps that lasted 1 minute around the play structure. And then I'd walk a lap. Then run. This went on for about 25 minutes. So I'm not sure how far I ran. I probably ran for a total of 8 minutes, which is kinda pace with what's been happening on real work out days anyway. It was just mayhem for a while at the park until we got into our groove. We'll have to work on that for next week because I have the twins home with me all week for Thanksgiving break!

I'm not sure I'll be able to get any exercise in on Friday, Saturday and Sunday. I am flying to San Diego early Friday morning and spending the weekend with some girlfriends. I hate to stop running so soon, but I know I'll be back at at on Monday. Even if it's raining! (I hope the weatherman is wrong!)

Wednesday, November 19, 2008

Day 4

Last night I was talking to Paul about my running/walking routine and I said, "ya know, I think if I just speed walked the whole two miles I'd probably make it in the same amount of time."

Well, wouldn't ya know it, I was right. (I'm always right, aren't I?) So what does this tell me? I'm not quite sure. Is walking fast (out of breath to the point I cannot carry on a conversation to save my life, but not hacking up a lung) just as good as the run/walk combo? I think I still cleared out my lungs just as much as when I'm running, but I wasn't running. If you have any insight on the subject, do tell. For now, I think I'll continue with the run/walk combo next time. It's definitely harder to do, though both exercise sets are difficult for me.

Let's see what can I complain about this afternoon? I feel like I have a fever but I don't. I'm beyond tired, like all I want to do is curl up in bed but I have treatments to do. Oh and two kids to take care of. And my right leg is aching, like it used to do when I was a kid and I had circulation problems. Motrin usually clears that up, but I'm not due for my next dose until 2:45PM and it's only 1PM. Yup, I think that just about sums it up. Oh, and I feel like I moving in slow motion. Like I have lead weights attached to my arms and legs. I'm telling ya folks, exercise is not all that it's cracked up to be. But I push on...

Tuesday, November 18, 2008

Running Day 3

Goal: Run 2 minutes, walk 3 minutes. Repeat five times.

I woke up sore, wobbled over to my drawer of drugs and popped my first 800mg of motrin for the day. Don't worry, I'm not overdosing, it's actually part of my treatment regimen to take three of these puppies every single day. It reduces inflammation in the old lungs. My back ached as I stumbled out of bed today, but my right hip and right knee seem to be on the mend.

So today's goal was the same as Day 1 and Day 2. On those days no single running "burst" lasted more than 90 seconds, despite my goal. Well today (hold onto your hats ladies and gentlemen!) my first running burst lasted 2 minutes and 10 seconds! Holy cow I'm a rock star! But the next 6 rounds lasted anywhere from 1 minute to 90 seconds which is not so great, but not worse than the first two days.

My route is about 2 miles long and the first day it took me 32:30. The second day I shaved off 1 whole minute. And today I shaved off another minute, coming in the driveway at 30:30! When I got to the top of the driveway (I'm making that sound more grand than it actually is) I leaned over resting my hands on my knees to catch my breath. I stayed there for about a minute and it felt so good... just... to... stop. I stood up and got super dizzy. I'm pretty sure this is just a side effect of being out of shape. But perhaps it's a side effect of not oxygenating well during exercise. I must investigate further into possibly purchasing a pulse oximeter.

I'm not going to lie to you folks. This running thing sucks. It sucks, sucks, sucks. I hate gasping for breath. I feel like I breathe in and some evil barricade has been built to block the full expansion of my lungs. I want to breathe in more. I need to breathe in more, but it just stops. And I gasp and pant and wince with every breath. Then I choke and sputter and spit. It's really a beautiful thing. I'm just glad I picked my routes to line the outside of our neighborhood, so as to run into less people. More cars, but less actual people. I did run into one people today.. twice! This man was in total pedestrian clothes, like a button up shirt and khaki's and he was strolling around the block. About a mile later, I passed him again. He was going the opposite direction of my lap both times. But still, not breaking a sweat, just strolling along. Probably traveling the same distance as me and I'm practically dying, trying to make good time and there he goes. Strolling through the park. Ugh.

Monday, November 17, 2008

About Me

I'm writing this entry so you can get an idea of who I am and where I came from. I intend the rest of my blog entries to focus on my new exercise regimen. Without further adieu, my introduction:

I've been consumed by Cystic Fibrosis. I mean, literally I think about it all the time because it takes up all my time. In the last five years, my daily treatments have increased from a half hour twice a day to a whole hour three times a day. That's a lot of commitment for something I never signed up for. But I did sign up to get married and to have children and for them I will do anything to just keep breathing.

I was diagnosed with Cystic Fibrosis when I was 3 months old. I have a box full of all my baby pictures. In it you will find not one single roll of film developed in April 1976. That was the month I spent in the hospital, nearly dying from this disease my parents didn't even know I had. How devastating to find out your newborn baby has a genetic defect that will likely kill her before she finishes grade school. Children with Cystic Fibrosis rarely celebrated a 12th birthday in those days. But times have changed, now half of us live to see our 37th birthday!

When I was 8 years old I started going to a Cystic Fibrosis summer camp in Northern California sponsored by the ever so generous Cystic Fibrosis Research Inc. Camp became the single most important week of my life from the age of 8 through 18. Even when cross infection became a hot topic and most CF summer camps closed their doors I didn't bat an eye. Before the age of 18, I would have rather catch an awful bacteria in my lungs that could kill me than stay home from summer camp. I was going to die anyway, so why not have fun and enjoy living? But after I turned 18, there was college and I suddenly got too busy to return to the place that brought so much excitement and anticipation year after year.

Fast forward to today, where I am 32 years old, married, two kids and a dog in Sacramento suburbia. I don't take risks with my health anymore. I am vigilant with all my treatments and medications. This is not different from the way I grew up, thank god my parents were spared the rebellious teenager syndrome with me, but it's different today because the number of treatments has grown to the point of consuming my day. I can no longer hold a full time job. I am a disabled adult. I drive with a handicap placard in my car. I take over 20 different medications every single day, multiple times a day.

A few days ago I was reunited, albeit online, with an old camp friend. Before sending her a note, I browsed through the pictures she had in her Facebook album. I saw that she had one picture with the caption, "on my way to Stanford to get evaluated for transplant." I immediately thought well this is typical for a cystic our age. I wonder if she has been saved by a double lung transplant yet. Or maybe she's still waiting for one. Regardless, being thirty something and living with this disease you kinda have to expect this kind of hurdle. I have to admit, I was a little jealous. She was either already sick enough to get a transplant or maybe she'd already recovered from one.

A lifesaving double lung transplant is definitely something I want to explore when the time comes. But I'm not sick enough yet. I want to use up these old lungs as much as possible but at the same time, the life post transplant can look glamorous to someone in my condition. That is of course if you don't end up six feet under first. Transplants are not fool proof yet. They are not a guarantee to a better quality of life, just a chance at one.

I consider myself a fairly high functioning cystic, even as much as my lungs have deteriorated over the years. I keep close tabs on how well I am fighting this terrible disease by measuring my FEV1 at my doctor visits. I can usually tell you exactly what it's going to be before I finish the test. For the last year or so I've maintained a baseline of 1.50 Liters. However, at my last "well checkup" appointment two weeks ago my FEV1 was 1.38 Liters, and I wasn't even sick. In fact my doctor commented on how clear my airways sounded. I was doing great!... for me.

A healthy female at my age and height should have an FEV1 of about 3.0 Liters. In laymen's terms I like to describe the FEV1 as "lung capacity." As you can see I'm falling below the 50% marker even though I consider myself hyper-compliant with treatments. The typical threshold to start considering a double lung transplant is when your baseline FEV1 starts to teeter below 30%. It's much more complicated than that, but you get the idea.

I decided to get in touch with my old friend and find out how she was doing. The response I got was very surprising. It seems she did get evaluated for a double lung transplant but was deemed too healthy with an FEV1 of 40%. She'd been stuck at that level for years. She changed doctors and her new doctor told her she was too young to be this sick (any thirty-something cystic would find this statement shocking). In the next year her FEV1 rose from 40% to 71%! Her CT of the lungs showed minimal permanent damage. Oh what I could do with 70% lung capacity!

I had to find out what her secret was. I think I already knew, so I was a bit disappointed when she wrote me back and told me it was exercise! Now this friend of mine has inspired me to run for my life. It is possible I have far too much permanent damage, after all, every cystic is different. This disease can be ruthless. But I'll never know that unless I try. So last Sunday I embarked on a 6 month journey to see if this running thing can get me out of my lung slump. The rest of this blog will be about my running adventures. I have no idea what the next six months holds, but it's sure to be an interesting experiment!