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

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

10 years, amazing people...one lucky girl.

This past weekend was my ten year high school reunion. Ten years. When I think back of what my life was like, what I was like....I can hardly believe it. So much has changed. The usual things have changed for all of us - big moves, marriages, babies, jobs - but my life, well its been a little cray cray. Going from completely healthy and normal, to spiraling towards death quicker than I think any of us actually realized at the time, to getting a second chance at a normal life after this transplant...well its been quite the roller coaster. Unfortunately, since I am still going through rehab and recovery here in Jacksonville I wasn't able to attend the reunion, which seriously bummed me out. I don't think lots of people really look forward to reunions, but I truly loved the Albemarle High School class of 2002. We had some awesome memories from those years and I was able to experience it all with some seriously awesome people. I really hate I missed it. But, if I had to miss it for anything, I guess a double lung transplant is a good enough reason! And hey...hopefully this transplant will get me to our 20th reunion!




AHS Class of 2002 10 year reunion - only about 1/3 of the class, but some awesome people turned out. And thanks to my girls for bringin my picture so I could make an appearance in the photo! LOL!!


While thinkin about all I was missing out on this weekend, I started thinkin about all the incredible people in my life. Ones who have been in my life since I was a child, to the ones who have been more recent additions. I realized that even though things haven't exactly gone perfectly over the last ten years, I have gotten through it and have been showed grace and blessings from God more times than I can count. And those blessing start with the incredible support system I have developed over the years. From family, to friends, to medical professionals - I have acquired an amazing group of people around me that, without every one, I wouldn't be here blogging about how incredible my life has become right now.




Me the week before my transplant - skinny, weak, on oxygen almost 24hours a day, and in a lot of pain. Very sick. Couldn't hardly stay awake to eat.




Nearly 7 weeks post double lung transplant - lots of color in my face (no more sickly gray), no more oxygen, gaining weight (20lbs and counting!), more energy than Ive had in years! Feelin Awesome!


I decided that this post should be less about me and more about a few incredible people in my life. People who have gone above and beyond these last few months to show me and my family an incredible amount of love and support. Way more than I deserve I can tell you that. There are many more than just the few I'll mention here today but trust me - before this is all over you'll hear about them all! In order to express our gratitude to everyone, it will def take more than one post.

The first group are my amazing girlfriends from Albemarle. Ive know these girls since I was very young. We have pretty much grown up together and been through A LOT to say the least. Our lives have changed so much the last few years - moving away to different towns (and in my case states!), weddings, babies, deaths of loved ones (we have seriously experienced the entire dang circle of life together). We are all spread around so getting together isn't very easy and only happens every so often. So you can imagine my surprise when I walked down to the lobby of our hotel the night I was discharged from the hospital after my transplant to see the sweet, beautiful faces of my best friends in the world - Janna Brown, Lisa Wray, Katie Adams, Adrienne Averette, and Sallie Spencer (we were minus one that night until later when Brittani Edwards arrived to further surprise me the next day!). I quickly dissolved into tears, something not very characteristic of me, and remained in complete shock for the rest of the night. Their presence right after the most life changing and stressful and amazing surgery of my life was EXACTLY what I needed. They will never, ever know what it meant to me that they had road tripped it down to see me, at the time not even knowing that I was out of the hospital yet. Ive loved these girls practically my entire life, but at that moment I honestly had never loved them more. And to keep the surprises coming, they had ordered these awesome bracelets and were all wearing one when they arrived. The bracelet they gave me is one of my favorite things in the world and I wear it EVERY DAY. It seriously hasn't left my wrist since I put it on that night. The bracelets are silver with the words Hope - Love - Breathe engraved on the outside and my initials engraved on the inside. They had actually ordered them from someone who was selling them to raise money for a family friend whos child has cystic fibrosis as well. So it not only meant as a symbol of support and love for me and what I was going through, it also helped another child with CF and that is so awesome. Did I mention that I love these girls? I do. A lot! We were able to spend most of the rest of the weekend together which was so much fun (albeit exhausting). It was the best possible to spend my first weekend post transplant and out of the hospital. I will never ever forget that time.




The awesome bracelets my sweet girls had made to show their support for me. I absolutely LOVE them - both the bracelets AND my girls LOL!





Dinner at Taverna in the San Marco district in downtown Jacksonville...super yummy and fantastic company! Couldn't have been a better day!


Another group of people I want to say a special thank you to is a group I am not going to name names specifically. Im not sure if that would make them uncomfortable or not, so to these people - and you know who you are - please forgive me for not naming names. These wonderful people have sent cards, gifts, gift cards, and financial donations to us in the last few months and we cannot begin to tell you how incredibly thankful we are to have each and every one of you in our lives. The contributions and kindness you have shown us has made these past two months so much easier to get through. Almost daily, a card or letter shows up in my mailbox with such incredible words of love and encouragement. I have saved each and every one of them and will keep them forever. They have carried all of us through this and we covet the love and prayers that have so generously been bestowed on us. Please know that we will never forget your generosity and we keep you all in our heart and prayers daily. You'll be hearing from me directly soon enough, but I wanted to be sure you all knew what an impact your support has made in our lives.

Also, right now are a few groups of people who are organizing fundraisers on our behalf. I am going to be honest, this actually makes me slightly uncomfortable. Having so many people coming out to support us - while absolutely amazing and overwhelming - is still embarrassing for me. I just keep wishing that it wasn't something that was necessary. But at the same time I am SO unbelievably humbled and grateful to everyone who is organizing and participating in each. We will never ever be able to express our overwhelming amazement at the generosity of so many. It is absolutely amazing the hearts of people. God continues to bless us, through all of you, and it is my fervent prayer that the blessings you all have given to us are returned to you in a huge way.

Thanks for indulging me a little tonight. I have tons more people to thank, but I want to make sure I can do it right and by trying to fit too many in on one post seems like it would get watered down a little. And the thanks we have for all of you is NOT something that should be watered down. Annnnd Ive got another day full of blood work, PFTS, xrays, and the ever exciting bronchoscopy tomorrow. I hafta be up and at em and a terribly ungodly hour, so its time for me to get some much needed sleep. My sleep patterns are still very crazy, so please send up a few prayers for them to regulate a little more, and of course, for positive results from the bronch tomorrow. I haven't had one in three weeks, and I am super nervous about what they will show. Ive been feeling great, and the fact that they feel Im doing good enough to move them from once a week to once every three weeks is a good sign, but still....going that long makes me super anxious. I feel a shaky, sweaty Erin comin on as I wait for my results LOL! So fingers, eyes, toes and anything else that be crossed for luck - please! I'll post more hopefully tomorrow, depending on how I'm feelin post bronch. You never really can tell. Last time I was OUT for like 6 hours. Time before that it was only an hour. So, we'll be playin this one by ear! So till then, I hope all is well for everyone! Nite all! :)




My good friend THE BRONCH...ahh we shall meet again soon my friend....


Much love...



Erin