Wednesday, July 24, 2013

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.


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.



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



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.



My glorious (and newly engaged) cuzzo Carly and I...typical
(check out her blog )

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

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