I'll have my heart in San Francisco!

This weekend Mandi and I are packing up CysticLife and heading to San Francisco!! If you're in the area and would like to meet up, send me an email at ronnie@cysticlife.org. You could also come out to the CF Concert Series on Saturday night to show your support. We have an amazing line up including two cysters who can really sing the roof off of a building!!

Here are the details on the CF Concert Series:

October 9, 2010 VIP Party at 6:30pm - Show at 7:45pm - Studio 333 - Sausalito, CA

The CF Concert Series proudly announces our first west coast show ever - CF Concert Series San Francisco! Join us in the heart of the Bay Area, Sausalito, CA. The CF Concert Series began in Dallas in 2007 as a gathering of friends and music lovers with the common goal of finding a cure for Cystic Fibrosis.

The Line-up:

Mike Gibbons is a wandering singer-songwriter who found his home in Northern California in 2003 after growing up in locales such as Bangkok, Nairobi, Cairo, and Brussels. These wide and eclectic cultural influences play a large part in his music, which exhibits a global musical sensibility beyond his years.

Tess Dunn is a 15-year old singer-songwriter who hails from Santa Cruz, California. Diagnosed with Cystic Fibrosis, Tess faces issues of mortality that infuse her music and lyrics with radiant richness and haunting depth. Tess says living with CF is “…almost like having a clock ticking over your head, but it has a way of putting things in perspective.”

Rose Logue sings with a soul and depth that invites audiences into her magical world of love, mermaids, pain and heartache in her album, “Fly.” Rose’s voice has been described as sounding like honey mixed with thorns, gritty around the edges but soft and delicate within the melodies. She has a fantastic range that goes from ethereal highs to “lost everything” lows.

You can get all of these details and more at http://cfconcertseries.com/sanfrancisco/

Hope to see you there!!!!

What the _____?: October 7th, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

From left to right: Mandi, Me, Josh (Mandi's brother), Chrissy (Josh's wifey)

Alright, what do ya got!?!?

Last week's photo with the winning caption:

1st: "Now that we're married...I always have to say that it was ME who farted."

submitted by Jen

2nd: "Darn! Dunkin' Donuts is CLOSED!"

submitted by Marissa

3rd: "We're not morning people...come back in three hours"

submitted by Mindy

Let's just say we had our wires crossed...

First let me get some run updating out of the way before I launch into the story about Mandi and I getting our wires crossed (I think it's an entertaining story, but you can of course be the judge). Back to my personal run update: I've been improving on my pace ever since I got sprung from the Hole, but today I actually got worse by about 30 seconds. That's the bad news. Good news is that I ran the 1.8 mile loop with no walking breaks!!! Some of you are probably wondering how that happens (that I can take walking breaks yet have a better pace)? You see, for the past few days I've been doing a walk/sprint/run/walk/run/sprint kind of a thing. Today I just did a RUN kind of a thing! I'll still alternate between the two, because I really do enjoy the sprinting part, but today it was nice to try and keep the same pace the whole time. Mission accomplished!

Ok, now to me and my ever so lovely wife getting our wires crossed...

Ronnie: (totally out of breath after getting back from his run) Honey! I ran the whole time!!

Mandi: That's great babe! I'm so proud of you! (brief pause) Want to ride your bike while I go for my run?

R: Oh, you're going for a run?

M: Yeah, you motivated me.

R: Sweet! Let me go change my bike tire. (I put a "never flat" one on yesterday and I hate it)[Ronnie goes out to fix tire]

M: [Mandi comes into garage] Ready?

R: Yup, let's do it

M: Man, you've become a pro at changing that bike tire huh?

R: You know it

So we take off down the driveway and no more than 10 seconds into her run, my bike starts making all kinds of crazy noises.

R: Keep going, I'm going to see what's up with the bike. I'll catch up with you.

M: Ok

R: Where are you going?

M: Down E then left on Q

R: Ok

[Mandi is seen running down E as Ronnie returns to the garage]

So I get to the garage and flip the bike on it's bike side to discover that the chain is rubbing against the frame. I grab my handy bike tool, adjust the tire and everything looks good. I start going down the driveway, pedal once or twice and all of the sudden, my chain is around the pedal. Not good. Now I wheel the bike up to the driveway, thread the chain back around the pedal and onto the gear, flip the bike upside down, pedal the bike with my hands and the chain is rubbing again. Check Mandi's bike to see where her chain threads. Go back to my bike to see that it looks the same. Decide I'm an idiot (or as Mandi would say "a real pro at this tire changing thing") and just grab Mandi's bike.

Having no clue as to how much time has passed at this point, I decide that instead of going where Mandi was, I was going to go to where she was heading. I pedaled her little bike as fast as it would go, cutting across the entire neighborhood on Street M to Street C which meets up with Street Q. No Mandi. I then pedaled my butt off to street K knowing that she said it was going to be a shorter run and this was her shorter route. No Mandi. I go down to Street K thinking that Mandi must be incredibly fast until it intersects with Street M. No Mandi. Flip the bike around to go back down Street K until I get to Street C. Look both ways and there she is, waaaaaaaaay down Street C in the opposite direction of our house (her long route). I pedaled her little bike as fast as it would go because I know she doesn't like running alone at night. Then...nothing. Not only was it not her, it was literally nothing, a mirage of sorts. Flip the bike around and start pedaling up Street C to get to Street Q (no short distance mind you). Get to Street Q. Nothing. Turn down Street Q to head back towards the house and a half of a mile later I hit pay dirt!! (In total there was 4.12 miles of zig-zagged goodness).

Mandi: Where were you? (in a not so happy, out of breath, tone)

Ronnie: Looking for you! (in a matter of fact, out of breath, tone)

[At this point Mandi turn back to run towards the house as I ride beside her]

SILENCE ENSUES

[Back at the house]

Mandi: Where did you go?

Ronnie: [see above]

M: What happened to "I'll catch up with you?"

R: That's what I was trying to do!

M: But if all you did was drop off your bike and get mine...

R: That's not all that I did [give another brief version of the story]

M: So what, do you think I run a 7 minute mile?

R: I had no concept of time. I was trying to cut you off. I'm sorry.

M: I just don't know what happened with "I'll catch up with you"

R: Yeah, I know, I'm sorry but I've been riding my little butt of trying to find you. There certainly wasn't a lack of effort on my part. I mean, I had sweat running into my eyes and I couldn't wipe them because of the stupid grease on my hands from the bike chain.

M: You know I hate running at night. I was running all alone.

R: I know. That's why I tried to find you.

M: Why didn't you just go the way I went?

R: Because I was trying to be clever and cut you off. Next time I'll just go the way you went.

M: I've been running back and forth Street Q looking for you.

R: I know honey, I'm sorry.

SILENCE ENSUES

[roughly 3 minutes later]

Mandi: I'm sorry I got frustrated and I realize that you were probably just as scared as I was (while hugging me)

Ronnie: I wasn't scared.

M: Women running alone at night get kidnapped, I could have been kidnapped.

R: I passed three women running alone while looking for you and they were fine. (typical guy thing to say. idiot)

M: Then they're stupid.

R: I'm sorry that you were tired, running around looking for me.

M: I wasn't tired, just frustrated.

R: I'm sorry. Next time, I know just what to do. We just got our wires crossed.

M: Friends again?

R: Friends again.

M: You have grease on your forehead.

CUT SCENE

So that was my best recap of what unfolded. I'm sure Mandi has a different side of the story and I will say that I'm sure I left some parts out. I just thought it was funny and an interesting look into a silly "dispute" between Mandi and I. Hopefully you guys out there can learn from my mistakes :)

Sorry I bored you to tears. The end.

Worst (and best) Run Yet.

Today was definitely the worst and best run I've had since being out of the Hole. Let's start off with why it was the worst:

• I was super lethargic and tired after taking the weekend off (not going to do that again).
• I ate beef taquitos for lunch (never smart).
• It had just rained so I was dodging puddles (I'm a straight line kind of a guy).
• I felt extremely not motivated because all I wanted to do was snuggle up to my wife after work on a rainy day (not that that's not what I want to do on a sunny day).
• My third treatment of the day didn't get me as "loose", clear and open as it usually does (as the treatments get later, they seem to do more for me).
• My legs were extra pained by the fact that it had just rained (I'm seriously an old 30)
• My shins burned and pulled to the point that I was hobbling

Alright, enough of Debbie Downer!! Now for why this was the BEST run since I've been out of the Hole:

• This was the first time I've run right after a rain, so it was "extra" cool outside (running to 95 degree weather gets old , fast).
• I was actually yearning to run after taking the weekend off (never thought there would come a time when I WANTED to run).
• It started out with the longest straight run yet, which was just under 8 minutes (not bad, but only going to get better).
• For the first time since getting out of the Hole, my legs felt worse than my lungs (yay!)
• I pushed through more pain on this run than on any run for a LONG time (the more I fight, the better it feels).
• I was able to sustain a quicker pace for longer (I even managed to keep Mandi in my sites for almost 5 whole minutes and that never happens :) )
• Best news of all, I beat my fastest pace by 4 seconds (It feels GREAT to defeat Mr. Run on a day that seemed to be full of Ms. Debbie Downer)

So what's the moral of this tale? Push through! I know I've said it before, but I'll say it again. Doing a little bit of SOMETHING is better than doing a whole lot of NOTHING. Often times it just simply sucks to exercise, believe me I know. One thing is for sure though, it sucks for everyone, CF or not. We we don't exercise, it's not because we have CF, don't feel good or don't have the time - we don't exercise when we make the conscious decision to place exercise low on the list of priorities. I know a lot of cysters and fibros who have no time and don't feel good yet lace up there shoes everyday to do something active. I also know that it's paying HUGE dividends for most of them.

Now the question becomes, what's going to be YOUR little bit of SOMETHING today?

1,000,000 Hits and a Giveaway

WE DID IT!! Ronnie and I said FOREVER ago that we couldn't wait to see CysticLife reach 1,000,000 hits. Why 1,000,000? Because it sounds like a lot, but more so because of what it represents. It means that the thing we spent hours, upon hours, upon hours thinking about, dreaming about, and working on, was actually being USED. (Side note - social networks totally blow if no one uses them. Sites like CysticLife, where they're mainly user-generated content, absolutely TANK if no content is generated). I had many panic attacks picturing this skeleton of a site sitting unused...but that's not what happened at all (and I'm not surprised). The CF community has a way of rallying together, and is incredibly awesome at sharing, helping, discussing, and encouraging one another. We are just SO SO SO thrilled that people are using CysticLife as a place to help and love on each other. But I'm getting side-tracked, so let me cut to the chase.

When we realized that 1,000,000 (like that I write the number instead of just writing 1 million? I'll be honest, it just feels good to see the zeros!) hits was possible, we wanted to be sure to give back to the community a little of what they were giving to us. We wanted to spruce up and add to the site, so we gave it a facelift and added a new homepage. We also, wanted to move our mission offline so we launched the CysticLife Grant Program, where you can apply for an activity, medical, or educational grant. We are SO SO excited by this, and absolutely CANNOT wait to start seeing applications come in, so we can continue giving people the tools they need to be successful in their CF Life.

And here's where the whole point of where I'm going comes in (yeah I know, it took me awhile to get to the punch...that's typically how my stories are, just ask Ronnie). I know a lot of you guys are already members on CysticLife, but if you're not, I wanted to clue you in, incase you don't follow the CysticLife Facebook Fan page (where we'll be making this announcement). As of RIGHT NOW, the first 100 people (LIVING IN THE US) to register on CysticLife.org AND send CysticLife a message on CysticLife.org, will receive a free SideStream Plus nebulizer. Pretty awesome right!?!

So non-CysticLife members, here's what you do:

1. Go to www.cysticlife.org

2. Register (be sure that you receive the validation email, and finish the registration process by following the link in the email...sometimes the email can end up in junkmail, so watch for it)

3. Once you're a member, search for CysticLife.

4. Once on CysticLife's profile, click the little mail icon, and shoot us a message.

5. If you're one of the first 100, we'll send you a message back asking for your address so we can send you the nebulizer cup.

6. BOOM, it's that easy.

I am a HUGE fan of free stuff, so I couldn't help but pass on the good news to those of you in the CF community who follow the blog, but aren't CysticLife.org members yet. Didn't want you to miss out on the opportunity to win a cool new "toy" and a good excuse to get over to CysticLife to see why it got 1,000,000 hits, the new homepage, site design, and CysticLife Grant Program.

**If you are a member already, you won't be eligible for a free SideStream Plus, BUT you can head over to CL, check out the new homepage and site design to let us know what you think, AND be sure to think about how CL can help you be successful through a CysticLife Grant.

**Please note you must live in the US to qualify!