Started a New Running Plan!

**I've been getting a lot of questions lately about how I started running and if there was any particular plan that I followed. Well, here it is, and I must say, it REALLY works! Just stick with it and I promise that you'll see great results :)**

So I was back to some running today and I must say, it felt better than I thought it would :) I was fortunate enough to be following the blog of my cysta Sara today after she posted a good running routine which should get my butt back into shape. I'm prone to listen to her since she ran in a half marathon only 35 weeks after her lung transplant! Plus, she is an amazing and awesome person with a super cool husband to match, so why not take her advice right? I started it tonight, but I plan on being on the 2nd week by Monday. And in the effort of full disclosure I did cough up a little bit of blood tonight on the run, but it was very little and mostly streaked, so I'm not worried. I did two sets of 7% pretty close together today so my lungs may be a little irritated, who knows. As long as there's not an increase in blood over the next couple of days, I should be fine.

So anyway, here is the running plan that she posted (courtesy of fitsugar.com):

	Mon	Tues	Wed	Thurs	Friday	Sat. or Sun.
Week 1	Walk 6 min., run 1 min. Repeat 3 times (total 21 min.)		Repeat Monday's workout		Repeat Monday's workout
Week 2	Walk 5 min., run 2 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout
Week 3	Walk 3 min., run 4 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 4	Walk 2 min., run 5 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 5	Walk 2 min., run 8 min. Repeat 3 times (total 30 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 6	Walk 2 min., run 9 min. Repeat 3 times (total 33 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 7	Walk 1 min., run 11 min. Repeat 3 times (total 36 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 8	Walk 5 min., run 20 min., walk 5 min. (total 30 min.)		Walk 5 min., run 23 min., walk 5 min. (total 33 min.)		Walk 5 min., run 26 min., walk 5 min. (total 36 min.)	Walk 5 min., run 30 min., walk 5 min. (total 40 min.)

Once you're up to running 30 minutes straight, try to stick with this four times a week.

My Top Ten Most Frequented Websites

So I spend a lot of time on-line. Generally I will be working, but during my night treatment, I'm usually able to stop by some of my favorite sites to see what's going on in the real world! Here are my top ten most frequented site during the past six months:

1saleaday.com- I go to this site every night before I go to bed mostly just to check out the sweet deals on there. I have actually even broke down and bought a few things as well! I've gotten some Wii controllers for my little brother for free (just had to pay shipping) plus I got a Margarita machine for the Melin's that was 150 and I picked it up for 25. Check it out, you may just walk away for something.

Yahoo.com- For whatever reason, I've always like the way Yahoo presented there news, sports, finance, etc..I generally try to stop by at least once a day to check on the national/world news and the stock market.

Espn.com- I love me some sports. I generally read through as many box scores as I can during my last treatment (except for hockey) just so I can stay on top of team records and who's doing what.

WildAboutAZCats.com- I may love sports, but I love Wildcat sports even more! My beloved University of Arizona will always have my heart, especially the basketball team. Basketball isn't even my favorite sport (football is), but I've always felt emotionally invested in our Basket Cats. This site talks all things Arizona sports and is a great resource for what is happening with our teams.

Twitter.com- I'm not on my Twitter account as much as I used to be, but I still find it a very valuable resource for keeping up with what is going on in certain communities. I stay up with many in the CF and running communities through Twitter and I also tweet many of my blogs and CF news.

Facebook.com- I've met many of you through my Facebook page and I'm very thankful for this wonderful site. It's a great way to keep up with some in the CF community as well as flip through photos until your heart is content. There are also a bunch of good groups out there that serve the CF community that have pages on Facebook. One of my favorites is CysticLife's fan page :)

Movoto.com- I've been looking for a house lately and this site is simply one of the best for how much information it has on it. You can find out just about anything and everything about a house that peaks your interest and they generally have good pictures of the property as well.

TinyURL.com- I post a lot of links to interesting articles I find onto Facebook and Twitter. Since I usually don't want to take up a ton of space with a long URL, I'll shorten it with this free service. One thing I like about them is there is no account and no signing in necessary.

RunSickboyRun.com- Yeah, guilty. I spend a lot of time on this site. I probably should be spending more, but I have a little project going on right now that is taking quite a bit of my time, focus and energy. I really enjoy writing for this blog though and I really hope that it can serve as a source of education, inspiration and hope to many of you!

CysticLife.org- Believe it or not, this site has been taking up most of my time the last six months. We launched yesterday, so it feels real good to "release the site to the wolves" (that would be you guys)! If you haven't signed up for a profile yet, please do, over 300 people in the CF community did yesterday!!!

What are your favorite sites? Any that I just need to add to my daily list?

Who Wants to Dream With Us???

Today is the day that Ronnie and I have dreamed about for what feels like forever. We have dreamed big and it feels so incredible to see our dream coming true. I could not be happier or more excited than I am today, to see where else our dreams will lead us. What am I talking about you ask? Let me back up and give you the full story so you can join in on our dream.

As most of you know, Ronnie and I have worked together for the last 10 months. In April of last year, Ronnie was asked by an incredible couple, the Gettels, to create a web site for the CF community. The charge was undefined, but the possibilities lit a fire under Ronnie unlike anything I have ever seen. His love for the CF community and his desire to support and encourage them fueled his imagination. Our life became one huge brainstorming session. This dream became a reality with the formation of an organization called CysticLife. And we were well on our way after assembling a dream team that consisted of Ronnie, two brilliant web developers, and his beloved (this would be me, Jezzabel prefers unemployment) to write, design and spread the word.

To us, CysticLife (CL) has become a dream not only for an organization, but for a community. CysticLife isn't just a new organization; to us, it's a new movement. We want CysticLife to be a place where people can come when they're down to be picked up, and a place to share your accomplishments when you're riding high. It will be a place to gain knowledge from your peers who have lived it and get it. CL is about becoming comfortable with who you are and what CF means in your life. It is about transforming the CF community into being their own cure. We want to give people the skills to manage their CF and take care of themselves. We want people to go through life with a smile on their face, a can-do attitude and the confidence to take on whatever challenges might come their way.

We have taken our first steps to making our dreams come true. Today, we launched CysticLife.org, a social network (like facebook) made specifically for the CF community. On CysticLife.org people can post blogs, ask questions, maintain a profile, contact others, and search members by age, location and relation to CF. This is going to be an incredible resource, and the best thing is...this is only the beginning.

We are super excited about this site and would love for you to check it out, and hopefully share in our excitement. We truly love and value each of you and your opinions. You never hold back on RSR when it comes to sharing what you think, so we're hoping you do the same for CysticLife.org. We know if you think it's terrible, you'll tell us like it is, and that if you think it's great, you'll join in our on dream. We're really shooting for the latter ;-) !!!

Oh yeah...in my excitement I forgot to give you the link. Here you go: www.CysticLife.org

Welcome to Joshland!!

Are you looking for a new CF/Life related blog to follow? Then look no further than Welcome to Joshland! Josh has got to be one of the most involved and inspiring fibros out there and I thoroughly enjoy the friendship we have built the last handful of months. Recently, Josh has been working on his YouTube page to be a kid friendly CF show of sorts. He has only filmed the intro "episode" thus far, but I'm sure with a little bit of nudging from you (and your kids) he'll be eager to do more. Josh has a BIG heart for kids and it really shines through with his warm and inviting personality. I encourage all of you to check out the "pilot episode" below and stop by Welcome to Joshland after you leave here!

If you didn't think that was enough, check out the talented fibro Josh and a couple fellow cysters contribute to The Breathe Song Event. This song has been a real source of inspiration to many of us in the community and, in my opinion, one of the best CF related materials ever put out to mainstream. Enjoy!!

The Cells of CF

I thought this article did a good job explaining what is going on in the cells of a CFer, cause remember, it's not a lung disease. Cystic Fibrosis is a CELL disease.

Inhibition of Proteostasis Restores Ion Channels in CF Cells

Tuesday January 5, 2010

Our cells are full of enzymes that mediate activities like growth, metabolism, replication,transcription and cell signalling. They are all unique in their structure, and have evolved over time to perform the specific functions for which they are made. Some enzymes are hydrophillic(water-loving, or water soluble) and remain in the cytoplasm of the cell, while others arehydrophobic, thus more lipophillic. The lipophillic enzymes are generally found embedded in cell membranes and tend to have roles such as mediating the transport of small molecules and ions across the membrane. Cystic fibrosis transmembrane conductance regulator (CFTR) is one such membrane protein.

In order to study its structure and function, it is necessary to first purify a protein. Like all hydrophobic transmembrane proteins, study of CFTR is hindered because it is difficult to purify and study in a stable form. However, it has been determined that mutations in the gene encoding CFTR result in an improper protein structure, that folds incorrectly, is recognized as defective by cellular machinery, and is destroyed.

Without CFTR, chloride ion transport in the lungs is hindered, resulting in a mucus buildup characteristic of the disease. Efforts to treat CF by altering the gene or protein structures in patients have not been terribly effective, but last month a study was published that showedrestoration of ion transport could be achieved by controlling the actions of a class of enzymes responsible for proteostasis (destruction of proteins) called histone deacetylases (HDACs). A compound called suberoylanilide hydroxamic acid (SAHA), already approved by the FDA for treatment of lymphoma, was able to restore up to 28% of channel activity in isolated cell cultures from CF patients. The authors, Hutt et al., postulated that by preventing destruction of imperfect proteins, those polymorphisms that are not completely disfunctional can restore some ion exchange capacity in cell membranes.

Full article at http://biotech.about.com/b/2010/01/05/inhibition-of-proteostasis-restores-ion-channels-in-cf-cells.htm

Make sense??

My Equipment

A lot of you have been asking me lately about what equipment I use in terms of a compressor, Vest and neb cleaner*. I thought I would re-post this just in case some of you were wondering but didn't want to bother asking.

My Vest:

The inCourage™ system offers state-of-the-art airway clearance therapy incorporating the most recent advances in high - frequency chest compression (HFCC) science. Demand is growing rapidly as physicians and patients alike express their preference for the advantages of theinCourage™ system. (http://www.respirtech.com/patients/respiratory-products/ICS1-overview.php)

My Compressor:

The durable MOBILAIRE 50 psi Compressor is ideal for use with medications that require more flow and pressure for proper nebulization. (http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=IRC607&catOID=-536885346)

My Portable Compressor:

The Invacare Stratos Portable Plus is a sleek, new portable compressor that will offer speed, ease-of-use and stylish design in one compact package. Small enough to fit in the palm of your hand, it will be ideal for those who desire mobility, expediency and efficiency in an aerosol delivery device. (http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=IRC1730&catOID=-536885346)

My Nebulizer Cleaner:

The Philips AVENT iQ24 Electronic Steam Sterilizer is the most sophisticated steam sterilizer you can buy and the easiest to use. It works quickly and continuously, keeping contents sterile until you need them, giving you more time to get on with your day. http://www.consumer.philips.com/consumer/en/us/consumer/cc/_categoryid_MCC_PREPARING_FOR_FEEDING_CA_US_CONSUMER/

*Oh, yeah, and I don't represent any of these companies nor do I benefit from them financially...my lungs do reap some benefits however!

Other links:

My Medications

My Supplements

My Pulmonary Function Test History

Light Poles, House Hunting and Sushi

On Thursdays I like to reflect on a few things that I'm thankful for just so I'm forced to sit here and think about how good I have it. Don't get me wrong, I generally think about how good I have it every day, but it's nice to get it down on virtual paper once a week :)

Also, HAPPY BIRTHDAY ERIC!!!!!!!! You're the best looking elder statesman that I know! (It's Mandi's dad's 50th birthday today)

Here we go....

I'm so thankful that I've successfully made it through two runs over 1 mile in the last 3 days! It may not sound like much, but after my last hospital stay, it took me a while longer to work back up to any sort of a distance. When working out, I'm always setting markers for myself and trying to approve upon them. For example, on yesterday's run I made it about 3 light poles further than I made it on Monday's run. On Friday, my goal is to run a handful of light poles further. It's all about going forward more than going backwards!

Mandi and I have stepped up our housing search for when we tie the knot! I feel so blessed to even be in the position to buy a home. There are so many people in this world that go their whole lives without ever owning a home. The fact that Mandi and I will be able to (hopefully, fingers crossed) start our lives in a home we chose and purchased, in a neighborhood that we picked out, is just mind blowing to me. Seriously, we are so so so so blessed.

I'm very thankful for being able to spend time with friends yesterday. It's been quite some time since we've hung with friends between being out of town so much and being so busy. We were able to get a small group together and catch up with the going-ons in their lives which was very nice. I'm also very thankful that things seem to be going very well for my friends also! We all caught up over some Happy Hour sushi at Ra which always makes me smile (I'll smile anytime I get something for half price)! Mandi and I are very blessed to have the group of friends that we do :)

Let me hear it guys, what are you thankful for today??

Who's Your Mandi???

Alright, alright, alright!!! I'm into the full swing of things with my workouts and running and thus far we haven't skipped a beat. That's the good news. And the bad news is....NOTHING!! But seriously, I did want to share with you guys my feelings and emotions during my first week of getting back onto the saddle.

The hardest part is obviously just making things a routine again. Going from laying in a hospital bed for a month and then getting right into the holidays doesn't do much for the ol'routine. I had to force myself to get up early this past week and start off every morning with a brisk walk. If any of you are out there and thinking about starting somewhere, I would start here. It is absolutely AMAZING how much mucus I cough up on my morning walk. We're talking gobs upon gobs of the green/yellow/clear super glue. The best part is, it really sets up my lungs for feeling nice and clear for the rest of the day.

We've also been hitting the gym up again. So far we've been circuit training each time cause I haven't written down an actual workout program to follow yet. Circuit training basically means working out each muscle group with lower weight and higher reps in one gym session. We've been switching up the lifts, but hitting all of the main muscle groups, except legs. Why not legs you ask???

Cause they're KILLING me from running. I started out slow last week and didn't push it too hard during my runs. I did some interval running which gave me a chance to catch my breath in-between each "sprint". Even with the ability to catch my breath though it was still incredibly tough. Well this week, Mandi really took no prisoners with me and bumped it up to the next level. We're really pushing for me to do a 5k sooner rather than later, so she challenged me on Monday to run 1.5 miles. HOLY COW! I think the actual distance that we covered was closer to 1.3 miles, but I can tell you without a shadow of a doubt that I couldn't have physically gone any further. I gave it absolutely every ounce of my being. When we stopped, I actually had to grab onto Mandi for fear of passing out. Luckily, I had 1.3 miles on the way back home to get my breath (and consciousness) back :)

So why am I saying all this? Well, I know I sound like a broken record to many of you, but working out and running is HARD. Especially if you've never done it or are just getting back into it. I can tell you that I want to increase my lung function more than almost anybody you know and I have the drive to do it and it's still tough. It certainly helps to have Mandi pushing me and for that I am very grateful. Honestly, I'm not sure that I could do it without her...well, maybe I could, but part of my motivation for taking my health back would be gone.

Do you have a Mandi in your life that can push you? If not, maybe it's because they don't know you want to be pushed. I encourage you to reach out to a family member or friend and let them know how important increased lung function is to you. I guarantee that if you take the first step in approaching your Mandi, they'll help get you across the finish line.

Top Ten Gifts I Wanted for Christmas

I actually wrote down the list of stuff that I could use or would want a couple days (December 21st in fact) before Christmas cause I thought it would be fun to see what I did or didn't get. Keep in mind, I actually didn't ask for any of this stuff. The only way anybody would have known would be through casual conversation or because they saw holes in my underwear :)

This list is in no particular order (gifts I received are highlighted):

Underwear- What do you know, I got underwear for Christmas! It's actually pretty funny why I received new chonies (can guys use that word?) as a gift. Mandi and her mom (Nancy) were folding laundry one day and Nancy held up a pair of my boxer briefs that had a baseball sized hole in the back and said, "Well, I know what I'm getting him for Christmas!" As they made it through the rest of the laundry it became pretty apparent that I needed some as I don't think I owned a pair without holes. Ventilation, right guys??

Germ Guardian- I've been using a baby bottle sterilizer to clean my nebs, but I was getting annoyed with how long they would take to dry. More than a couple of CFers have suggested the Germ Guardian (uses dry heat to clean baby toys) to me as a way to speed up the drying process. Guess what? I got one for Christmas!!!

Fizzy NAC- I've heard too many good things about Fizzy NAC not to give it a shot. I did not get any for Christmas, which would have been a complete shock if I had, so I will be ordering some sooner rather than later.

Hair clippers- Having a shaved head is one the the easiest hair styles around, but it still requires some up keep. My hair grows super fast so I really should be shaving it once a month. Problem is, I'm too cheap to pay 15 bucks a month to get my head shaved. We tried using a shaver that Mandi has, but I ended up having long hair, short hair and everything in between :)

Brita Water thingamajig- This is one of those things that every time I pass one in the store, I think to myself, boy, that would be nice to have. But again, cheap ol' me doesn't want to give up the 30 bucks to get one. I actually did end up getting one for my brother though as a present :)

Pots and Pans Set- Mandi and I like to cook (although we need to start doing it more) so we know that we're going to need some good pots and pans for down the road. Nancy and Eric (Mandi's parents) got her a nice Iron Clad set for Christmas!!! Nancy uses a website that carries imperfect sets for a fraction of the cost. We sent a couple back because the coating looked a little off, but they'll send us replacements shortly!!

Beach Cruisers- Mandi and I had such a great time riding beach cruisers in California that I figured it would be nice to have a set here. Plus, I'll be able to sneak in some exercise without really thinking about it. At some point this year I'll have to spring for some.

New shower head- My shower head has been duct taped on for quite some time now :) It actually doesn't bother me at all so I don't plan on replacing it. That's the joys of not having a wife around, just duct tape it and it's fixed! Won't be able to do that much longer!!!

Video camera- I didn't expect to get this for Christmas, but it's definitely something I want. I love to put videos on the blog and we'll need a nice video camera for CysticLife stuff. Mandi and I have talked about getting one for each other (we didn't exchange gifts so we could save money) so we may be doing that early on this year.

Cold weather running shirt- It's getting a little chilly outside (Arizona standards) during my runs, so I figured that a cold weather running shirt would be nice. I prefer to run with no shirt at all, but I tried that the other day and the cold wind stung a bit :) Time for a shirt!

I would be remiss if I didn't mention one other gift that I got for Christmas. My mom and step-dad got me a single serve coffee maker. The type that you put little capsules in for a single cup of coffee. They both know how fanatical I am about coffee, so it was definitely the perfect gift!!!

Holiday Highlights

HAPPY NEW YEAR!! I hope you all had a great holiday season. My mom left Saturday, my dad left Sunday, and today it's back to the grindstone for me. Before saying goodbye to my favorite time of year, I thought I'd relive some of my favorite moments with you all, in a photo montage I like to refer to as my holiday highlights...ENJOY!

A tradition started last year, Ronnie gives "suggestive" funny photos to my parents. This year, he was gifting himself to them as the newest addition to the family...ahh nothing says Merry Christmas like your future son-in-law pretending to be naked in a box!

I like to call this "scrapping paper". I "scrapped" most of my gifts this year. What is scrapping you ask? Take all the little random scraps left from cutting real sheets for other gifts and put them all together...Taaadaaa!

We realized on Christmas eve that we were short one stocking. Ronnie cheerfully said, "just give me a sock!" "NO WAY JOSE," I thought to myself, "EVERYONE NEEDS A STOCKING!" So 30 minutes later, he had one. Made for him by his very own little seamstress. **Please note the Christmas tree detailing with the fancy button on top!

Christmas morning! We have a photo of us sitting on a staircase EVERY year since we were born.

My parents gave me a BEAUTIFUL pearl ring to balance out my ring fingers...I think it was my dad's secret ploy to remain just as much the man in my life as Ronnie :)

Ronnie got a TON of games from his family for Christmas...but this one was my personal favorite!!! **Please note the cover of the box.

Not too long before 2010!! Ronnie was really excited about the new year ;-)

My New Year's Resolution...

...is not to make a resolution. Not that there isn't anything I want to get done or goals I want to meet, but I'm not going to tie them to any one day. If you look up resolution in the dictionary you'll find something like "a firm decision to carry out an action", well, I did that a long time ago. Since the day I was able to form my own thoughts, I've chose to live and more importantly, to do whatever necessary to live up to a standard that I've set. I admit, there has been times that I've been off track, but something always happens to whip me back into focus.

2009 proved to be a year that got me back on track. I think that in the couple prior years preceding, I had become comfortable with my lung function hovering around the low 60's. It took a crash and burn in the beginning of 2009 to snap me out of my comfort zone. Many good things have come out of that, but the most powerful has been getting my attitude back that "just being comfortable" is not acceptable. So actually, I changed my mind, here's my resolution for 2010: I REFUSE to be comfortable with my lung function at any point this year!

So, what's your resolution for 2010?

My First Kiss (of 2010)

Bringing in the New Year right with a kiss from my lovely fiancee....

...which happens to be one year to the day that I first told her that I loved her.

Sickboy's 2009 In Review

Here's the best that I can remember 2009....

January- I came back from China on the 17th and promptly went into the emergency room. I had been coughing up cups of blood at a time for 3 days in a row and couldn't walk more than 50 yards without having to take a break. My incredibly low sats and inability to breath without a bi-pap landed me in the ICU.

February- I celebrated my 29th birthday in the Hole. My PFTs were steadily improving, but not at the rate I was accustom to. At that point I would take just about anything though, since I checked in with an FEV1 in the 20's. This is when the light really started to flicker.

March- I got released from the hospital exactly 50 days from the time I had entered. It was my longest trip ever and one that I will never forget. At my release, I had an FEV1 of 51%. I knew I had to make a change. I started RunSickboyRun.com as a way to hold myself accountable while taking on the task of running one full mile.

April- Within 5 weeks out of the hospital I had gotten my FEV1 up to 61%, not quite where I wanted to be, but definitely moving in the right direction. I had still not run a mile and was wondering if running was really the monster that I wanted to take on.

May- This month was full of fundraisers for the Cystic Fibrosis Foundation. I've been very honored to be invited to speak at many events over the last handful of years and hope to continue to do so.

June- June was a big month with the annual family trip to Rocky Point, a trip to Flagstaff with Mandi and also the celebration of one year together with the love of my life. This was also when I realized that other people were starting to benefit from hearing my story and wanted to know more than just how far I was running. The transformation of RSR begins.

July- This was a big month for my "running career". I was seen by a foot doctor who was able to craft me some specially made orthotics to help with the extreme foot pain I was having while running. I also went back into the Hole for a short two week stay, but this time I entered with an FEV1 of 59%, 8% higher than when I left the Hole in March!

August- New structure for RSR is fully implemented with added features like Spotlight Sunday and Top Ten Tuesday! On a personal note, I started a clinical trial for the TOBI vs AZLI study. I was randomized to TOBI, so now I simply get paid to do my treatments :)

September- This was a turning point month for both me personally and this blog. While visiting Mandi's grammy down in Florida, I ran my first mile!!! In fact, I ran 1.5 miles that day!! As for the blog, it got some national exposure when I was named one of five winners for the Nature Made: Fuel Your Greatness competition.

October- We had another good month in the press when a Tucson newspaper ran a story about Mandi and I and our desire to increase my lung function through running. We were also very fortunate that it was picked up nationally by over 20 print and online publications. The daily unique visitors to RunSickboyRun are really starting to swell. I also had an FEV1 of 68%, my best PFTs since 2005!

November- Let's see, what happened in November, oh, that's right, I got engaged!!!! We also had a busy month with CysticLife as we traveled to Dallas, Texas to serve as a source of education and inspiration at the CF Concert Series. Upon my return, I was hospitalized again and saw my FEV1 drop to 41% within my first two weeks in the Hole. We also hit the over 100,000 hits mark on RunSickboyRun!

December- I got out of the Hole just in time for the holiday's with an FEV1 of 60%. It was a great month full of shopping, family and friends. I also had sinus irrigations done for the first time and my house got robbed while I was in the hospital. It was definitely a different kind of a month, but certainly had WAY more good than bad. I've had trouble getting back into rhythm with my workouts but finally got back in the saddle late in the month. 2010 better watch out!!

I'm so thankful for this past year as it has taught me much about myself and what we as a community can achieve if we put our mind to it. I have met so many wonderful people through this blog that I now call my friends and have been able to form relationships that I hope last a life-time. This has undoubtedly been one of the best years of my life and many of you are to thank for that. Here's the scary part though, it's only going to get better in 2010!!!

Finally Got Back Into the Gym!!

It's almost embarrassing to admit it, but I finally got back into the gym yesterday. I got out of the Hole on December 17th and it took me a full 12 days to get back into the land of dumbbells and bench presses. I really wish I had some great excuse to give you guys, but I really don't. Anything I could offer up would be just that, a poor excuse. Bottom line, I made the CHOICE not to go to the gym until yesterday and it's one that I hope I won't regret.

It's such a crazy feeling being back in that place. What's an even crazier feeling is actually lifting the weights. I fully expect to be incredibly sore tomorrow. We did some circuit training to get back into the groove and basically hopped from one machine to the next. The key now will be consistency. I'm usually pretty good about going once I get back into my routine, it's just a matter of actually getting back into my routine. Yesterday was surely a huge step towards that.

Today I hope to take another big step. I've been walking since I've gotten out of the Hole, but I have yet to get a run in. I thinking that today's the day to break out the old running shoes. I'm REALLY looking forward to it as I feel that nothing is better for me right now than running. I may only last 5 minutes, but that's certainly longer than I ran all of last week! As long as I'm making progress and moving forward I'm happy. It's those steps back that I try to avoid :)

Now the question is, in a very Jerry Maguire kind of a way, who's coming with me? Who will join me in my quest to get back into the gym and running regularly since leaving the hospital? Anybody???

Can CFers be Killing Too Many Bugs???

I'm constantly pleading with parents of CF children to not put their kids in a bubble. Not only does it end with the child being socially awkward, but it can also cause the child's immune system to be weakened. I have often pointed to studies that site that it is actually good for children to get sick in order to build up their immunities. I'd be much better to have a nasty cold as a kid with nice pink lungs than to get a nasty cold that you can't fight off with old and damaged lungs, like me.

I was given free reign as a kid and was not held back at all. In fact, I remember my mom encouraging me to play with kids who had chicken pox so I could get them out if the way (I never did get those)! Bottom line: Let your kids be kids. Kids like to get dirty. They like to play with other messy snotty nosed kids. They like to roll around in the dirt. Hopefully, by the time they get to be an old man like me, they'll be immune to every cold, flu, or ____ bug out there!

I also wanted to share an interesting article that falls along these same lines. I know a lot of parents out there who are disinfectant freaks. Now, I'm not saying to totally hold the hand sanitizer and whatever you clean your house with, but maybe you'll want to back off a bit after reading this article.

Disinfectants May Promote Growth of Superbugs

ScienceDaily (Dec. 27, 2009) — Using disinfectants could cause bacteria to become resistant to antibiotics as well as the disinfectant itself, according to research published in the January issue of Microbiology. The findings could have important implications for how the spread of infection is managed in hospital settings.

Researchers from the National University of Ireland in Galway found that by adding increasing amounts of disinfectant to laboratory cultures ofPseudomonas aeruginosa, the bacteria could adapt to survive not only the disinfectant but also ciprofloxacin -- a commonly-prescribed antibiotic -- even without being exposed to it. The researchers showed that the bacteria had adapted to more efficiently pump out antimicrobial agents (disinfectant and antibiotic) from the bacterial cell. The adapted bacteria also had a mutation in their DNA that allowed them to resist ciprofloxacin-type antibiotics specifically.

P. aeruginosa is an opportunistic bacterium that can cause a wide range of infections in people with weak immune systems and those with diseases such as cystic fibrosis (CF) and diabetes. P. aeruginosa is an important cause of hospital-acquired infections. Disinfectants are used to kill bacteria on surfaces to prevent their spread. If the bacteria manage to survive and go on to infect patients, antibiotics are used to treat them. Bacteria that can resist both these control points may be a serious threat to hospital patients.

Importantly, the study showed that when very small non-lethal amounts of disinfectant were added to the bacteria in culture, the adapted bacteria were more likely to survive compared to the non-adapted bacteria. Dr. Gerard Fleming, who led the study, said, "In principle this means that residue from incorrectly diluted disinfectants left on hospital surfaces could promote the growth of antibiotic-resistant bacteria. What is more worrying is that bacteria seem to be able to adapt to resist antibiotics without even being exposed to them."

Dr. Fleming also stressed the importance of studying the environmental factors that might promote antibiotic resistance. "We need to investigate the effects of using more than one type of disinfectant on promoting antibiotic-resistant strains. This will increase the effectiveness of both our first and second lines of defence against hospital-acquired infections," he said.

Keep in mind, this is coming from a guy who washed his hands maybe once a week and just started cleaning his nebs consistently earlier this year, so by no means am I the "clean police". So although I wouldn't advocate using my extreme of "paying pretty much no attention at all to clean vs not clean"; I would encourage you to balance life with your level of spotlessness :)

My New Year's Resolution: Getting Back into the CF Routine

I have a new year's resolution...kind of...that I wanted to share with all of you. This year, my resolution is to be more supportive. Now, I feel that I am extremely supportive by most standards, but I have realized this holiday season that I'm not exactly doing my part to get Ronnie back on track with his treatments and exercise. As most of you know and experience, the holiday season has a way of throwing routines out of whack. For Ronnie and I, this is very much the case. We haven't gotten back into our work out routine since he got out, we've been running around and having to squeeze in shortened treatments and even skipping a few here and there. While this is understandable and even somewhat acceptable for a week, but it's inexcusable beyond that. (Although I must say that when I say he's been slacking on treatments, I mean some days only getting in 3 or 2 and a quick 3rd. He never missed a morning or night.)

Now comes into play my new year's resolution...I think I need to step up my support in order to get back on track, together. I have to admit, ever since my half marathon, I have NOT felt like running or even really working out. But I need to remember, it's not so much about what I do or don't feel like doing. I need to say, "we're going to the gym" regardless, to encourage Ronnie to get back into the workout groove, even if I don't so much feel like it. He did that for me A LOT these last 6 months, and I need to do the same for him. We are a team. So even when I don't feel like working out for ME; I need to feel like working out for HIM. In regards to his treatments, I should come clean. You see, this last week, I have been VERY selfish. I have wanted to run around all day, keep up with my parents agenda, done what I wanted to do. But I need to break that streak and make sure that I put Ronnie's treatments back on my priority list, and right at the top. Ronnie would have been a lot better about his treatments this week if I didn't demand he follow my agenda.

I know it's not quite the new year yet, but it will be before I post again, so I wanted to make sure I verbalized my new year's resolution so that you all would hold me accountable and ask us how we were doing on getting back into our routine. Have you all thought about your new year's resolutions? Any good ones you've thought of? Any you want to come clean with so we can hold you accountable? I want to hear them and PLEASE ask us how we're doing getting back into the workout and treatment grove after this holiday season.

5 Rules in Raising a Child with Cystic Fibrosis

Originally posted August 2nd, 2009

Welcome to the first edition of Spotlight Sunday. Today, I am featuring a blog that has five simple rules to keep in mind while raising a child with Cystic Fibrosis. Lauren does a great job highlighting the "rules" her fabulous mother taught her while she was growing up (and I guarantee still hold true today). Make sure to stop by Lauren's blog "I Have CF. So What!?" and leave her some comments. You can get to her blog by clicking on the title "How I was Raised". If you'd like to see some blogs that I have written about my mom, please click here.

How I was Raised by Lauren "LauLau"

I've gotten comments about how my mom raised me to be so positive. So here is a post that me and my mom came up with:

Here are the five rules she lives by:

1) Always look on the bright side:

My mom always maintained that we must look on the bright side. If I had to go in the hospital it was "Well at least you'll be feeling better for the rest of the school year!" The rationale for doing my treatments was that it would make me feel better for the rest of the DAY. If I got a new medicine she said "well at least it's just a pill!" and I just added it to the rest of my pills. Looking on the bright side made everything seem o.k.

2) Never let em see ya sweat, but be honest in the most positive way possible

My mom NEVER let me see her worry. She admits that when I was in the hospital she'd be up all night worrying, or when she hears me coughing at night she is concerned. But I never saw that. It's ok that she was worried and scared, she's allowed to be... but the fact that I didn't know how hard CF was supposed to be made me think it WASN'T hard. However, she did deal with it matter of factly around me. She didn't give me false expectations, she was honest about how I would feel in the hospital but she didn't make me afraid when she told me these things. I remember when I was in the hospital with hemoptysis (coughing up blood) I was so scared, and she was probably even more scared. She sat by my side holding my hand comforting me, telling me that a blood transfusion would only help me. She was honest that I might need surgery to stop the bleeding. And I trusted her, I still do, she's a nurse and she knows what she's talking about. That trust is important to have when your young and you don't necessarily know everything that is going on.

3) Stay as healthy as possible (whatever it takes).

My mom was ALWAYS on my back about doing my treatments and taking my pills. Even when I cried about it she was still persistent. She always said "It will only make you feel better" or that if i didn't do it, I would have to go in the hospital. This was enough to make me shove my nebulizer in my mouth! Sometimes, she even pretended to call the doctor to tell on me! I hated when she did that.. but she was only doing it to keep me healthy, and it worked! Now I know that I have to do my treatments because it will help ME and because she made it a daily necessity, I now see that doing everything I'm supposed to is ABSOLUTELY NECESSARY!

4) Make things fun:

Every doctors appointment was an adventure for me and my mom. Whether we sang on the car ride there (we still do), or went to a fun place in boston, we always had fun. She would get me a gift from the gift shop, or take me to the Enchanted Village (a Christmas display). Sometimes we would go out to eat to Friendly's or the Hospital Cafe. In the hospital, she brought me games, movies, and crafts to keep me entertained. She would even bring my friends in to see me! While I was doing treatments she would play games with me or just sit and chat with me. Every thing I had to do CF-wise, she made it fun. And this made everything A LOT more bearable!

5) Live your life to the fullest, and don't live in a bubble:

My mom taught me to "dance like no one's watching." She didn't put me in a bubble because I had CF. I played in the cold, did sports, got dirty, and stayed up late some nights. She never told me I couldn't do something because I had CF. Even when I missed school for 2 weeks she made sure I was doing my homework and staying on top of things. One time, I was in the hospital for my first formal dance in 7th grade. She wouldn't let my CF get in the way of living my teenage life. She convinced the doctors to let me out for the night, even though I had just come out of surgery for complications after a sinus surgery. She wouldn't have done this if she didn't think I could handle it, and she waited outside the dance for 2 or 3 hours in case anything went wrong, and let me enjoy my formal dance. CF hasn't stopped me from living life because of my mom, and because of that I am able to remain positive.

If you are a CF parent, I hope our "rules" have helped. If you would like to comment or ask my mom anything her email is mamabombo@comcast.net.