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!!
 

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

Thankful - doesn't even describe it

Happy Thanksgiving!!




Gotta love google right? :)

Chris and I just got home from celebrating with friends and family all day. I hafta say, this has been the best turkey day in YEARS. For the last few years, I have spent more thanksgivings sick and in the hospital that I have OUT of the hospital. And those I was out - I was still feelin like crap. This year -- total 180. We did the whole eat thing (and I'm fairly certain I ate at least HALF my weight in food - which is more impressive than it might sound considering the fact that I had to JUMP into my jeans today). I had fun, energy and even walked with my cousins, soon-to-be cousin-in-law, and a friend down to the intercostal waterway (annnnd a flooded field my cousin tried to present as the intercostal - we're smarter than you think Amy lol).

After our foot tour we left for a visit to a friend's house. God bless Italians. I'm not generally much for Yanks, but every so often you meet some northern Yanks or Pollocks and you just fall in love...(and I mean that sincerely, I'm not makin fun!)












To say that I'm thankful for the major change in my life would be absolutely INSULTING. The way this whole transplant thing is goin, I'm not sure I'll ever be more thankful to God for anything more. If there is something bigger ahead - well, I just can't see it. But then again I honestly didn't see makin it TO transplant, much less THROUGH it. So I guess anything is possible.

More than my life, I'm thankful for the people in my life. This entire journey would not have been the same without the incredible people who have stuck by me. My husband-who stuck by me at my absolute worst and who has driven me to the hospital more times than I can count in the wee hours of the morning. Who never left my side before or after surgery, and who has been better to me and for me than anyone I've ever known.

My parents - who traveled back and forth over and over, took a ton of time off from their jobs to make sure I was taken care of. My sisters who left their families at home to be with me during and after surgery, and who kept the pictures, phone calls and videos of them and my nieces comin when I was able to see them. Nothin can put a smile on my face quicker than those girls. Their husbands, my brothers, who have supported me and my sisters while I was in recovery and took care of the girls while their moms were with me.

The rest of my family - grandparents, aunts, uncles and cousins and in-laws who made sure we had what we needed and kept my husband fed while I was in the hospital.

My sweet sweet friends. All the beautiful women who I love so much. Whose love and support I couldn't have done this without. To so many amazing people back in Stanly County - they leave me at a loss for words. All the calls and cards and fundraisers for us has kept me in constant tears. Seriously I don't think I have cried as much in my entire life!! I def do not feel worthy of all the support, donations and most importantly prayers. You all have literally saved me. Without y'all I probably wouldn't not be where I am now.

My amazing doctors. Dr Layish here in Orlando has worked his butt off to keep me alive the last few years. And let me tell you - I made him work for his money!! :) He is one of the greatest doctors I've even known, and I am eternally grateful for all he has done for me and for his Mayo recommendation. He will always be a very special person in my life. My Mayo team - Drs. Keller, Mallea, Alvarez, and Erasmus. Truly some of the smartest men in the world and have saved my life. They took such incredible care of me. I'll never been able to repay them for giving me my life back.

My donor and his family. The 30 year old man from Miami who made the decision to donate his organs when he died. Who saved my life and gave me a life worth living. I wonder if he could even comprehend what he would be able to do for someone when he passed. I spent so much time at the beginning completely terrified of whether these lungs would "take." I don't worry about that anymore. Whether I get one year with these lungs or ten, I will always be thankful and grateful for the chance to live this way, even if its for a moment. I'm thankful for his family, that they decided to honor his decision instead of contesting it. I'm grateful for the life of their son, and their influence in it. His lungs were perfect. Whatever he did in life - he did good. I just hope that he's in heaven now, sitting next to Jesus thinkin, "That's awesome. That's why I did this." I also hope he knows how grateful I am, how I carry him, whoever he is, with me everyday, and that I will never take his life for granted.

Most importantly, I'm thankful for my God. For whatever reason, he put me here for something. I've been told so many time how inspiring my story is, what a miracle this all is, and how so many have seen Jesus' hand in all this. I don't know how or why - but I'm startin to agree. Like I said, don't know why it needed to be me, but Im ok with it. He's given me this opportunity. To some how make a difference somewhere, so I hope this wasn't my entire purpose, to go through this. But if it is...I'm ok with that. He's delivered me from the hell I was living in. And for that, I am eternally grateful.

I hope you all have had an incredible thanksgiving. You all have meant so much to me through this. I will be forever indebted to you all.


Much love...xoxo
Erin