Showing posts with label run. Show all posts
Showing posts with label run. Show all posts

Wednesday, October 2, 2013

recommitting myself to this writing thing

Well, I gave it the ol college try. And just like my real-life college experience, I started out really into it and did some killer work....and then crashed and burned.

Sorry Inhale-Exhale-Repeat. You deserve better. And better you shall receive!

So I'm back ladies and gents. And with my apologies.

Of course you can imagine the topics I intend to cover are gonna be pretty in line with what they have been - CF, transplant, etc - but be prepared to see the "etc" portion grow significantly. Since life has been pretty dull (THANKFULLY) on the transplant experience front as of late, I have been able to dive into things that I have not been able to in the past and I am loving it.

And I am not ashamed to admit that I need your help, support and, well, your money. I am shameless - get over it. You knew that about me when you started following this mess. I even put a disclaimer in the "About Me" section. If you didn't read that well, that's your bad.

Gotta love how I ask (beg) for your help, all the while criticizing (insulting) and scolding you right? I am a woman of many talents, what can I say. I think its all part of the charm. And I know that's why you love me. Or at least tolerate me and talk about me behind my back like normal people.

And now dear readers, lets address what I'm doing to make a difference and how you can (should) too!

Aside from gracing the blog-o-sphere with posts like these gems, I have committed myself to doing more work with a few groups (some still in the works, so we'll stick to the biggies for now). I'll focus on each one individually so that I can really commit to telling you what you need to know. See? I'm already doing better with this who recommitment commitment!

Number 1 - and the one you are gonna wanna pay the closest attention to - is the More Than Just Me Foundation. My friend Tommy Danger - no that's not his real name, but yes he will answer to it - made headlines last year when he completed a run of 3200 miles from Seattle to Daytona Beach to raise awareness for CF. Thousands follow him on all his various social media outlets. Building on the momentum of that run (labeled More Than Just Miles) he founded the More Than Just Me Foundation that has just spear headed its next campaign for CF called More Than Just Mountains. This crazy man and three of his crazy buddies head out to Mt Kilimanjaro in Africa next month to summit for CF! Through this #MTJMtns campaign, we hope to raise ONE MILLION DOLLARS for CF. These guys will be attempting to summit the seven highest peaks around the globe over the next few years. Through sponsorships for the climbs, we hope that ONE MILLION can be raised (through individual donations and commitments from companies) COMPLETELY FOR CF. We aren't just raising money so these guys can have a good time - trust me on that one.

THE CLIMBERS:
Clockwise From Top Left: Tommy Danger, Mark Noland, John Burkett & John Renken
 

 
 
THIS IS WHERE YOU COME IN. Got a friend at an airline? Work for a company that has a giving heart and would love to see their name and logo in news outlets around the globe? Wanna get your name on the flags that will be left at the highest summits in the world? GET INVOLVED and help us out. If you have connections of any kind, we'd love to see what kind of relationship we can build. These are the things we can use your help on, should you have the means:

GEAR - climbing gear for mountains like these don't just consist of a hoodie and an ENO hammock. It takes a lot of really high-tech, expensive gear to protect these guys from the incredible high altitudes and extreme climates. If you have connections with a company that can help outfit these guys with the proper gear please get in touch with me. Even local outfitting stores who have the ability to donate some goods at wholesale costs would go a long way. No help on this front, could be the difference between life and death for these guys.

AIRFARE - believe it or not, flying to Africa is not cheap. In fact airfare for these trips can costs thousands. I know, surprised me too. I mean all I could think of were these tiny planes half duct taped together landing in fields somewhere, and honestly how expensive can that truly be? But it is cause its not flight people frequent - its not like they have tons of airports and tons of flights to get you there. If you have frequent flier miles you can transfer to Tommy, a buddy who might be a flight attendant or captain who can hook it up with a few free or discounted tickets, or you yourself just wanna pay the airfare for one of these guys - give me a shout. We can't do any of this if we can't get there.

MONEY - the climbs themselves are pretty costly, and there are always unforeseen costs - travel, food, lodging - before and after the climb. We want the safest possible round trip for these guys as we can, so being able to make sure their bellies are full and they are able to stay in safe and clean lodging is a must. Please know that when you donate $$ to MTJMtns you are giving to people with a passion for what they are doing and commitment to cystic fibrosis that I have never seen. You can be assured that they will be thoughtful and respectful stewards of the money donated and will use it only if absolutely necessary. You won't see them dining at 5 star restraunts or staying at 5 diamond resorts. Hell, getting Tommy to sleep OUTSIDE of his van usually takes an act of Congress (which by the looks of how things are shaping up lately, is gonna be an even loftier task). Trust me when I tell you if Tommy could drive to Kilimanjaro and sleep in his van, he likely would.

LIKE/SHARE/RT/REVINE/ETC - get connected with MTJMe on Facebook, Twitter, Vine, Instagram and whatever else Tommy has gotten them on. Share the updates and news with your friends and encourage them to step up and support them. Post about them to your followers and ask them to do the same. More Than Just Miles started as a grassroots campaign and still uses that following to reach most of the supporters we have. We love likes and shares and such so hit em up and help em out!


I am excited to work with these guys, and you'll likely see me doing all of the above and reaching out and begging for support all over the world in the near future (if u haven't already noticed that). I am already so proud of what they have accomplished and am even prouder to be able to call someone like Tommy a friend. I have some great friends, family and supporters of my own and I hope you guys will join me in what I have deemed the "second chapter" if you will, of this transplant journey. We can refer to it as "The Aftermath" - in which Erin has recovered and been set loose on the world. You didn't know it, but this is what you got yourselves into last year when you came on this journey with me. I hope you stick around for this new leg and continue to support me as you have. I love you all and covet your support. It has made the biggest difference in my life, and now I am trying to focus it towards making a difference for others. A little pay-it-forward-action if you will.

So please, check this group out. Links are below. And enjoy this little video one of Tommy's buddies  helped make for us to help spread the word.

BIG LOVE - E

www.mtjm.org
www.facebook.com/mtjme
Twitter: @morthanjstmiles
YouTube: More Than Just Miles
Instagram: MTJME

CHECK OUT THIS AWESOME VIDEO!!
 

Tuesday, April 16, 2013

What a weekend...

This weekend I headed over to Daytona with some pretty awesome people to celebrate and welcome home Tommy Danger after an incredible endeavour:

The man RAN from Seattle to Daytona Beach. All in the name of cystic fibrosis.

When I first heard of this campaign I was not sure if I should be impressed or worried for his mental health. Turns out neither impressed or worried adequetly describes the More Than Just Miles campaign.

Cause thats EXACTLY what this was: MORE. More than just Tommy Danger. More than just the duo of Tommy and Timothy Ettridge sleeping in their van in a Walmart parkin lot, eating rice and noodles everyday, going through more pairs of shoes than most go through in a lifetime. More than just a run. It was MORE.

The campaign began when Tommy Danger learned of his friend's son Ethan who was diagnosed with CF. He knew that the lack of awareness this disease gets would do nothing to help find a cure. Cures are only found through awareness. Because without awareness, there is no movement. No movement means no funding, no research, which means no cure.

Through his 3200 mile run, he amassed a following of over 5000 people on his Facebook page alone. Thousands have been reached and touched by his commitment to this disease, myself included.

Its people like Tommy and Timothy and the rest of the MTJM family that brings hope to so many suffering far greater than I am with CF. My life with CF has NOT been pretty - but it was better than many. Growing up I was always healthy - a runner, an athlete, never sick. It wasnt until the last ten years or so my CF was even a true issue. Obviously a lot went on the last few years, but all that has lead me to this moment. One where I can make a stand with people like Tommy Danger, Timothy Ettridge, Cassie Snyder, Brent Snyder, Tori Simpson, Deanna Silva, Michael Silva, Carlton Clippard, Joshua Teague, Morgan Gridstaff, Karen Pollina, John Pollina, Ed Bono, and so many others affected by CF. People from a half-dozen states (including fom my HOME - North Carolina!! -gotta love these people-) converged on Daytona and it was incredible. We came together on Daytona Beach and stood together for those of us who are no longer with us, those who weren't able to come fordifferent reasons, and those who have yet to learn about CF.

Throughout the last 6 or so months, MTJM has raised of $10,000 for CF. And that is just the beginning. The real testament to this story is the awareness that has come from it all. Thousands across the WORLD have followed along, supported, and shared this journey. This campaign has sparked so much MORE - I mean would it be anything different with a name like More Than Just Miles? From this journey a new campaign is in the works - More Than Just Mountains. Tommy and a few others will be hitting the summits of 7 of the worlds highest peaks including Kilamanjaro and Everest. All in the name of CF. MTJM is also expanding into a non-profit who will carry the torch for awareness for multiple causes, other than just CF. More Than Just Me will bring to light causes that desperately need awareness. And I am so excited for the things that will come of it.

I hope you all will take some time to check them out. These guys are the real deal and I promise you, you will be in awe of their compassion and commitment. Get involved with them - volunteer your time or talents. Give of your resources  - whatever they may be, and follow along and lend your support and encouragement. MTJM is on the brink of big things - and I am so stoked to be even a small part of it.

Pictures below are just a few from the finish party. Enjoy!

Check out More Than Just Miles::

on Facebook: www.facebook.com/morethanjustmiles
on Twitter: www.twitter.com/morthanjstmiles
on Instagram: www.instagram.com/MTJME
online: www.mtjm.org


 


 

  
 



BIG LOVE TO ALL MY CF FAMILY.


Erin

Tuesday, April 9, 2013

5k Speed, almost

Wow. Been a crazy eight months. Yep you heard that right -- 8 months.
8 months since a young man in Miami passed away, and by his selfless gift he saved my life. It still is almost unbelievable some times. The idea that my lungs are not my lungs. That part of me is not ME. And that my body works better without ME in it. Weird. Does that make sense?

I dunno. Don't guess it really needs to.

More news on my bionic body :: she dragged her ever-growing ass across the finish line of her very first 5k post transplant this past weekend - The Gr8 to Don8 Organ Donation 8k/5k. Well, it was really the first in about 11 years, so lets just say it wasn't the most exciting run, nor the prettiest, but it was 3.1 miles and I ran (almost) all of it. I crossed the finish line with a mildly embarrassing 48min (pretty sure it was somewhere between 45-48, I didn't look until i had already crossed and remembered they had a big clock posted for time) 5k speed. A far cry from the 20min 5ks from high school, but what can you do.


Organ Recipient 5k run number - 64! (Square root? = 8!)


Official run tshirt!


Runnin the track during the last .1 of the race

I realized half way through the run why I felt so sluggish opposed to the memories of how it used to feel when I ran. Aside from the obvious lack of muscle tone (its a work in progress people), I am enormous. Yup, officially hit the 152lb mark. Through the run I was VIVIDLY aware of the constant jiggle coming from a mysterious place behind me, one that I have never been aware of before. It was my ass. Its finally happened. I have an ass. Don't get too excited, we aren't talkin about a JLo booty...just one that fills in the seat of my jeans. No more frog/old man butt for me! But it has been quite an adjustment. There is just so MUCH of me. I mean, Im not FAT - but it definitely feels that way! I am OVER 30lbs heavier than I was the day of my transplant, and I have NEVER been this heavy in all my life. Learning how to maneuver this weighty body has been a strange, but welcome sensation. Except when I learned that it was partly to blame for the slow go through the neighborhood during the race...

At any rate. I ran. And it was pretty stellar. My donor lungs and my body worked pretty well together. I wasn't breathless at all, so that was pretty fantastic...and thinkin about my donor during that run made me more thankful than ever that he decided to donate his organs and that I was the lucky one to receive them. These bad boys are the real deal!

April is organ donation awareness month. By choosing to donate your organs when you pass you can potentially save the lives of eight people, not to mention the healing of many more through tissue and tendon donation. Be someone's hero and sign up to donate your organs! Learn more at www.donatelife.net or by reading the organ donation/transplantation section of this blog. Even if you don't think your organs would be accepted for one reason or the other - sign up anyway! You never know what can be used. Id love to hear from those who are donors - new donors and previous donors!



8 months, 8 lives that can saved through one organ donor, race number 64 (8x8), today is April 8.... I like 8s. 8 is a good number.... :)

Thanks again for all the continuous support! Remember to recycle your parts! :)

Much love...
Erin