About Erin

All my life I've been a story teller. I love to tell stories, especially funny ones. I like to get really into them and I have a tendency to get loud and I use my hands a lot when explaining things. I've never been good at editing these stories so they are typically laced with odd details most would leave out, and a healthy dose of colorful language. I've been told for years I should write all these stories down. Up until now I've never had any desire to really write - for various reasons. One main reason was that I figured any stories I had to tell were worthy of what I affectionately refer to as "toilet reads." You know, those small books full of random facts, stories or quotes that you flip through while passing time on the toilet?

I warned you. NO FILTER. And I promise, it'll probably get worse, not better.

Lately though, things in my life have changed a bit. For those who don't know, I was born with cystic fibrosis. I don't know who might be reading this that doesn't know, but in the interest of getting everyone started on the same page, there it is. Cystic fibrosis is a genetic disease that affects the lungs and digestive system. A gene mutation leaves my lungs coated in super thick, sticky mucus that's hard to get out and provides the perfect breeding ground for life threatening bacteria and infection. The same thing happens in my digestive system which makes digesting food a major pain (figuratively, but sometimes literally) and absorbing nutrients a near impossibility. If you've ever seen my skinny butt than you know that to be true. This disease isn't just chronic though (there is currently no cure), it's also a killer. Most succumb to this disease by their mid-thirties, though advances in technology, treatments and medications keep nudging that number higher and higher every year. For those of us adults with CF, our best chance now is to fight off the infections as much as possible, cram our faces with food and meds and hope for something to come along before its too late. Don't get me wrong - there are many CF patients who live to their 40s, 50s and older. I hope to be among them, but I'm not gonna lie to you. It won't be any easy road.

Growing up my disease wasn't ever anything really worth talking about. I was super healthy, played sports, and lived by all accounts a very normal life. My cystic fibrosis was well managed and I never had what is referred to as a "tune up," which is generally a hospital stay and loads of IV antibiotics. It wasn't until I was in college that I finally landed myself in the hospital. Once I had that initial tune up though, it was like someone flipped a switch inside me. Like my CF was triggered by a switch and before then it had been sitting in the OFF position. It was ON now and would remain in that position. Of course, its always been there. There really is no OFF position for CF. No "trigger" that brings it screaming to the surface drowning you in a constant stream of IVs, PICC lines, a port, chest tubes, embolizations, IV antibiotics, countless blood draws and scans, and multiple other procedures and multiple diagnoses apart from cystic fibrosis. It was always there...I just happened to be lucky enough - blessed enough - to make it through my childhood without any issues.

Turns out - I'm really quite a mess.

Through all this though, I hafta say, I've had an amazing life so far. Went to college (Go Appstate!), took trips and vacations, and in 2007 married my best friend. We later moved to Florida from my native North Carolina, and have since watched my sisters and many friends get married and have children, and so many other amazing things. It's been quite a ride to say the least.

Which bring us to now. Its July of 2012 and I find myself doing what I thought I'd never do - write. Telling the biggest story of, literally, my life. And I'm not writing just anything. A BLOG of all things. They always seemed like a selfish form of writing and the rantings of narcissists bent on flooding the Internet with their opinions about everything from food to politics to religion and a million other topics that I quite frankly had no desire to hear (or I guess read) about. Yet here I am, going against all that and diving in. There are many reasons I decided to begin this, but one of the main ones goes back to my cystic fibrosis. My disease has progressed to the point that I am now in need of a double-lung transplant to survive. My lungs have begun to fail to the point that I have less than 25% lung function left. Without a transplant, my prognosis is not positive. To be blunt - I'm dying.

So, in efforts to help myself remain sane through all this, and to keep friends and family up to date with what I am going through, wa-la! I give you Inhale - Exhale - Repeat. Such simple commands. Ones usually offered to those who need help to remain calm and focused through different trials. Ones that I find almost physically impossible to do. Yet ones I know I MUST be able to do, in order to survive both the transplant and life. Mentally and physically.

I warn you now. This blog isn't gonna necessarily be pretty. At times I may offer up what some may think of as WAY too much information. And it may not always be happy news either. Hopefully, there will be more good than bad, but who knows how all this will pan out. Plan on a roller coaster of days, moments, events and thoughts. I'll do my best to keep things from getting too outta hand, but remember what I said at the beginning? I have no filter. Don't say I didn't warn you. You're not reading about rainbows and kitty cats here, people.

So enjoy. Feel free to leave comments or questions if you wish, and I promise I'll attempt to answer them. I guess depending upon their nature I'll either make it a point in a post or I'll message you directly. Thanks for caring about my journey. I hope it'll be worth the ride!

Much love...Erin


**On July 31, 2012 Erin recieved her double lung transplant at Mayo Clinic in Jacksonville, FL after only 9 days on the waiting list and 2 days before her 28th birthday.