Showing posts with label CysticLife. Show all posts
Showing posts with label CysticLife. Show all posts

Monday, November 8, 2010

Miracle Marathoners and Radical Runners

Okay first of all, I think it's time for me to swallow my pride and offer you guys a serious and very heartfelt apology. I know I probably qualify for worst blogger of the year award at this point, a title that I'm 100% ready to accept for myself given the complete lack of updates for the past month. What I am not willing to accept is the fact that I apparently worried some of you with my unannounced hiatus taken right after the announcement of some minor medical issues. And for that, I am truly sorry. Please rest assured that I am fine, have finally come off of the IVs and many of the oral antibiotics, antivirals, and antifungals I was using to combat these infections, and have simply been taking some time to 1) live my life, and 2) reassess the direction in which this blog is going to go from here on out. But I'm back, I promise, and I'm going to be around a whole lot more starting right about now (cue the scary music, right?). So please stay tuned for some pretty cool new stuff that is in the works.

Anyway, I just couldn't let this weekend pass without mentioning a few absolutely awesome people and flat-out fantastic accomplishments. These four individuals inspire me to no end pretty much every single time I get the pleasure of seeing or talking to any of them, and I thought it important to share their incredible feats with the rest of the CF community.

1) Remember Ben? Well, on October 10, 2010 (10/10/10, for those who like that sort of thing), Ben ran in the Chicago Marathon to benefit the Cystic Fibrosis Foundation. Despite ridiculously hot temperatures that left him dodging fellow runners who lost their gatorade in the middle of the run (um, ewww), Ben not only finished but also beat his 2009 time for the NYC marathon and raised several thousand dollars toward a cure for CF. As an aside, tomorrow is also Ben's birthday (and that of his twin brother, Nate). Congratulations to both of them, and a HUGE thank you to everyone who donated, to Dianna and George (Ben's amazing parents, who were also a big support throughout my transplant), and all the runners on the CFF team. Well done, guys.

2) Many of you have probably heard of Emily Schaller over at Rock CF and Mandy Sharpe at Run Sickboy Run and CysticLife -- both incredible women doing awesome things for the CF community and beyond. Well, they've done it again. These two are collaborating to bring you the Outrun CF Virtual Run event.

-What: A fantastic event where CFers and their loved ones/supporters from all over lace up their shoes and hit the tarmac/trail/track to show their commitment to fighting CF and staying healthy. Held on March 20, 2011 (the same day as the Rock CF Half Marathon), this event will allow you to participate without the pesky trip to Michigan (although people in the area should totally head out to the real deal!).

-How: Easy. Just register, track your training using all the helpful tools provided, and then on the big day head out to run as much or as little as you can to show CF who's boss.

-Where: Your town, your street. No travel required.

-Who: You, of course. And all your friends and family. Naturally. Because I happen to know all my readers are some seriously cool people, and you must have some seriously fun people in your life willing to take this challenge for themselves and for YOU.

I'll be running, and so will Donor Bob (or his lungs, anyway). Hope we'll "see" you all there!

3) Okay, this one blows.my.mind. No joke. Nearly a year ago I was blessed to make the acquaintance of a very special man with CF who was also awaiting transplant at my center. He had a tough wait and many dry runs (though I would ultimately beat him on that score, ha), but his commitment to exercise and his never-say-die attitude convinced me beyond a shadow of a doubt that he would get his lungs...and he did. Several months before me, in Nov. 2009, my friend received his perfect match -- and then blew us all away by being out of the hospital in a mere 6 days! And now, less than a year later...well, I can't even describe the awesomeness of what he's doing. Just go HERE and see for yourself. Trust me, you don't want to miss this.

Congratulations, Tim! We are all so proud of you!

(His wife, Beth, also runs a CF charity that deserves a shout out as well. Check out Breathe for a Cause.)

As an aside, Tim and I were lucky enough to share a surgeon to whom we will both be forever grateful, as we are to the entire team at our center.

Love and light, beautiful people.

Tuesday, January 12, 2010

Do LIFE

So after months of anticipation and waiting, it's finally happened! This is the moment we've all been hoping for, and the one I hope will bring about some GREAT changes in 2010 for my life with CF . . .

www.cysticlife.org

Okay, okay, I know that intro wasn't exactly playing fair considering that this is a transplant blog, but in all honesty I'm really excited about this website. Started by my fabulous fibro friend Ronnie and his fantastic fiancee Mandi (of Run, Sickboy, Run fame), this is a new website for cystics, their loved ones, and anyone willing to "Join the Cause, Be the Cure." To better explain, I'm stealing a quote from Mandi's most recent post over at RSR:

"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."

So please, if you get the time (and really, who doesn't have 5 minutes?), go over and check it out, make a profile, and start connecting with other people who could use your knowledge, inspiration, and power! Just think of it as cystics without borders. Or something like that.

On a personal note, CF and transplant appointments this week, so stay tuned for updates.