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!!
 

Yup, I'm a slacker

I know it and you know it. Im not great at this blogging thing. Atleast I know where my strengths lie.


FAR AWAY FROM HERE.


Can you even consider this a blog if you don’t post more often than I have been guilty of lately? Obviously this isn’t something I have ever done before but I mean geez. I need to get back to this or just close it down.


As you may have imagined, posting to the blog was starting to get a little monotonous for me – and I am sure for you all as well. Not because of anything bad. But because everything was so GOOD it didn’t exactly make for interesting posts. Does that make sense? How sad it is that we (myself included) have been so conditioned to think that the only thing worth reading (or writing) is the uber exciting or unimaginably horrible. Average day-to-day activities just don’t excite anyone.


But I guess in my case it SHOULD.


How quickly I have gotten used to this new life. I’m going to be honest – I hardly think about what I have been through anymore. I am more focused on other things and other people’s struggle. I guess that’s a good thing. But sometimes I don’t even think about it until I am meeting new people. And usually I am not the one making a big deal out of it. I guess that just shows the impact it really did make on others. I still find it odd to think of it as a big deal. Cause I mean it was, but when you approach something that big and you don’t really have any other options it just sorta is what it is. And I guess because everything has been so EASY in terms of recovery…I guess it just seem like a big deal to me anymore. I know it was, but its hard to think of it like that anymore. In my mind it seems as routine as an appendectomy. In truth, I think when my appendix ruptured years ago the recovery from that was more painful and left me in “recovery mode” far longer. Now this transplant is just something that happened. Its done with, over. I’m just focused on moving on.


Sometimes I feel bad about that. Like I should be more conscience of what I went through and focus on it and my donor more. That’s not to say I don’t. I still have a point every day where that man – whoever he is – goes through my mind. But its no longer the consuming thoughts I used to have. I will never be able to express my gratitude to this man, but to dwell on him seems odd to me. I feel like he didn’t make the decision to donate his organs for the recipient to just sit around and dwell on him and not live. If it were me I would want the person who got my heart or my lungs or whatever organ they to LIVE.


And I plan on doing just that.


Im taking this part of him everywhere I go. I always know he’s there, just no longer at the forefront anymore. He’s along for the ride. Our lives will forever be intertwined, but this is still my life. A life I am still living because of him, but my life nonetheless.


So, all that being said - lets back up a bit and recap.


May was CF awareness month. Of all the things for me not to post about. Honestly. I am a sorry excuse for a CF advocate. I did lots on Facebook, but still. Oh well. What can I do now?


I also had a small hiccup and was in the hospital for a few days. Luckily this time I was not in for ANYTHING lung related. Of all the times I have been in the hospital this is the FIRST time I have not had to be on oxygen. It was the STRANGEST thing. I kept thinking something wasn’t right, like I was missing something. It was a fantastic feeling to be honest. I almost forgot all the issues I have cause it was such a NORMAL hospital stay (is there one of those??). Of course until the nurse comes in to give me pain meds or change out my IV and shes dressed from head to toe in the oh-so-lovely contact precaution yellow gowns, face mask and gloves! Then I was like “oh yeah.” Still technically “sick” I guess that will never not be the case, huh?


Like I said though, the issues I was having was female in nature if you get my drift. Without being to graphic (I can’t believe I actually wrote that here on this blog!), I have several issues with my reproductive system that causes tremendous pain and an amount of blood loss that actually caused me to need a blood transfusion while I was there. Obviously, anytime you have to have blood products as a transplant recipient there are tremendous risks involved. You can catch various things from donor blood, normally most isn’t an issue but with my almost-non-existent immune system, complications can arise. So its usually considered a last resort. But my blood work came back and all my numbers had tanked so it was necessary. Since the cause of these issues is still present I will be talking to Mayo when I go next to discuss more “permanent” fixes. Not sure exactly what that’s going to be as of yet, but the words “partial hysterectomy” were mentioned. I can’t have a blood transfusion every time I get a period so we’re having to go a little more extreme than others might have to. More on that topic once I know more.


So, on to June.


I would like to take this time to apologize to the graduating class of 2013 from Albemarle High School in Albemarle, North Carolina. Bless your hearts.


In case you didn’t know, someone had the brilliant idea of inviting ME to be the keynote speaker for my alma mater’s graduation this year. I know. I know.


Well, let’s just say it was prolly 1) not what the administration assumed I would speak about 2) they will likely never have another speaker like that ever again, and 3) I can say that because I am pretty certain they will never as me back and no one else is ridiculous enough to give the speech I did.


Let me be clear – I don’t THINK it was bad. I mean luckily I didn’t cuss a room full of children, parents and grandparents out and quite frankly that was a huge concern of mine. Turns out there was like a pool going to see how many cuss words I would let loose. Not sure if that was just a joke when I was told that, but I wouldn’t have taken that bet that’s for sure.


Still, when your mom counts how many times you used the word crap in a speech, there is prolly a little something lacking.


Just want to say I tried people. You took your chance – hope it wasn’t terrible for everyone.


I was a nervous freakin wreck with this mess. Turns out I’ll never be a motivational speaker!! Thanks to my sister who provided a little “liquid encouragement” in the parking lot I was able to get on stage and not lose it. Don’t get it twisted – it was just a SMALL encouragement. Maybe shouldn’t have mentioned that here, but what can they do to me. I wasn’t paid to do that so the only real thing they can do is not ask me back which, let’s be honest, prolly wasn’t gonna happen anyway.


I’m such an ass. Most people would get on here and speak about what an honor it was (which it actually was) to be asked to speak, and give their congratulations to the Seniors (which I do), but as you can see my focus is always just a little off. Sorta like my speech.

Jillian and I before I embarrassed my self.


*SIGH*


Anyway.


After that nightmare came our annual “Fam Jam” at Daytona Beach. Every year for as long as I can remember my family on my mother’s side as decended upon unsuspecting Daytona to wreak havoc on its beaches and in its bars. This year was no exception. Except that this year was a little different for me. Every year I have been since I moved down here has been fairly miserable for me. I am either just getting out of the hospital before, or right after the week is done I am IN the hospital. Quite frankly it was just annoying. And forget about me having a great time. I could hardly ever breathe, and toting around oxygen poolside is not exactly anyone’s idea of a good time. I was exhausted all the time, and walking from my room to the beach seemed like walking across country.

 

Sunnin poolside (and yes I am wearing like 55 SPF)
 

Unfortunate Karaoke evening 1

Ahhh..beach time

You can BARELY see my port anymore cause of all the FLESHY-NESS..

.do YOU know where it is?

Trying to act like I know what I am doing with a camera

 

Poolside refreshments

Typical FL weather....daily storm, like clockwork at 5pm

CORN HOLE

MASTERS OF THE BAGS

My sexy cousin Fat Jacob (love you boo ;) )

Pool, beach, cowboy hat, GOT LUNGS coozie, and a Coors Light? Sounds like

a good vacation to me.

Ummmm....

DAYTONA BEACH BABY

My glorious (and newly engaged) cuzzo Carly and I...typical

(check out her blog www.howdairyyou.com )

Last year I was only at Daytona for two days. Most of my time was spent going through my evaluation at Mayo. How crazy is that? How DIFFERENT everything has become in less than a year. I honestly was sorta thinking that last year was gonna be my last year going, which is why I went at all. Just to go one last time. Guess God had other plans! J

This year was a blast. I could walk and run. Unload my car all by myself. Haul things to and from my room with little to no effort. I even walked for what seemed like miles down the road from one bar to another one night. You can FORGET about that happening in previous years. I know – this doesn’t exactly seem like “exciting” accomplishments. But I’m telling you – unloading the car and pushing a heavy ass cart full of my crap across the parking lot and up to my room with no help was damn near a thrill for me.


The little things. Doesn’t take much does it?


 Now we are into July. Lot's more to come, and even more to update you guys on - including my most recent Mayo Clinic visit - but you'll hafta check back later for all that.



Hope everyone is having a great summer! XO

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