i cannot deny that you were designed for my punishment

feeling: productive
listening to: "Smile, You've Won" by Lydia


I finished my first week of physical therapy and HOLY HELL do I hurt!! Scott has made me stretch muscles I didn't even know I had hahahaha. I seriously feel old though and don't tell me "You're too young...." I'm not. Thanks to Mason for this, he said, "We're young kids living in old bodies." That's so true. It's getting to the point that it's hard to sit at the computer anymore and even to lay in bed hurts sometimes. This isn't because of my physical therapy, it's because of all my meds taking their toll on me. It's over 3 and a half years since I had the transplant so it's bound to catch up to me sooner or later I guess. I just hate when my body doesn't function "normally."

I've felt so rebellious lately. I want another tattoo and although I've been told time and time again how bad it is I can't tame the urge. Some of you reading this (if anyone even actually read it) are thinking I'm being stupid. It's a tattoo.....who wants one anyway? I happen to love tattoos as a way of expressing myself. I got my Tinkerbell tattoo when i was 17 and don't ever regret it. It doesn't have as much meaning as some of the tattoos that I want today and I want to get out there and "redesign" my body. Getting tattooed is almost like getting a passport. Passports have a bunch of stamps tp represent places you've been and tattoos are like stamps to help you remeber certain points in your life. Its like a scrapbook for your skin haha. Besides, sometimes it takes pain like that to make you feel more alive. I've had a semi-major surgery since the transplant, a few little ones and a bunch of those dentist appointments that require the antibiotics. My question is, why can't I get a tattoo if I just took an antibiotic and made sure to keep it clean? Ugh.....

And I was going to say something else but my meds give me the memory of a goldfish. *pause for thought* Oh yeah!! I was going to say how much more confident I'm feeling about my French/American Sign Language. For those of you who don't know, I'm currently in school trying to be an interpreter for deaf people. The French is totally random but I absolutely love learning it and hope I'll some day be able to live in Montreal or something for a little while. This is one of the reasons I keep going. Being able to work really hard (like learning a language) and then having a huge goal (like living in Montreal) is what life is all about. After all, you gotta have goals- some fun, some serious because that's what'll keep you motivated from day to day.

let's get physical

Well, I guess I better start actually blogging now. I'm going to do it like I do in my journals so here it goes:

I'm feeling: calm
I'm listening to: "Gehenna" by Slipknot (I've been listening to this CD nonstop lately and this song in particular so you'll probably see me listening to it in the next blog too.... :P)

I went to my first day of physical therapy today and it went very well. First some background as to why I need it.... I apparently have peripheral neuropathy and the cause of it? No one knows. It could be the pills, it could be the fact that I was bed ridden for so long before the transplant or it could just be that my nervous system sucks in general. Either way I experience a sort of numbness all the time and it gets worse when I walk long distances.

The worst of this happened when I was a bridesmaid at my friend Meredith's wedding. Walking around in the heat in high heels and having numb legs is NOT a good combination. I just could not hold myself up anymore and after attempting to walk to take pictures and looking like I was drunk doing it, fell over simply because I couldn't support myself anymore. I just started bawling because it frustrates me when my body prevents me from doing things that seem so simple.

So, I've talked to doctors about it and many medications and tests later I'm still the same and getting worse. Physical therapy was once suggested but then also blown off as if it wouldn't help. I decided to go against all of my doctor's negative attitudes about it and try it. Why not, right? So today was my first day of actually working out. Last week I met the therapist, Scott and he said we would do 2 days of aquatic therapy and 1 in the gym every week. Today I was in the pool and I was so nervous!! First of all, no one is allowed to see me in a bathing suit, I'm so self-conscious of my body. But Scott, (who happens to be a total cutie) has scars too from an accident he was in. So, he actually does have a nice body and doesn't care about the scars so it helped me not to care either. Obstacle one complete. Obstacle two: I CAN'T WALK!! How am I supposed to sustain exercise? It actually wasn't bad. The pool actually gives you a good workout even while only doing simple activities so I felt like I got a lot accomplished.

We'll see how it goes but I feel really comfortable around Scott. I think he's really trying to help me and do what is in my best interests. I can't wait to see if I start feeling stronger or if I can go longer distances when I walk. My goal is to be able to go on a European cruise next summer and actually be able to do things like tours and stuff.

London. London. London. London. London. London..........

(London is my favorite city in the world by the way so being able to go again is my inspiration to make sure this therapy works. I gotta try, right?! Wish me luck.)

one last breath

I've been thinking about my friend Kristi a lot lately so I figured I'd copy my Myspace blog over here so you guys could learn a little about her....

I've sat in front of my computer screen for at least an hour thinking about what to write but I simply don't have the words. I got a letter in the mail today and I was excited because it was from Kansas, "it must be Kristi writing me back. And it's even thick....yay for pictures!!" As I open the letter I see a card from her mom. "Oh that's nice," I think. And then my eyes focus on the obituary in my right hand. Kristi's. I drop it on the table and run crying....WHY?!?! This can't be happening. Not to my Kristi.

I met Kristi in January of 2005. We were both wating for double lung transplants. I always felt like I had it a little better than her because she was forced to get exercise and walk up and down the halls with her trach tube. I got to sit on my ass. But every day she'd be walking back and forth and I'd wave admiring her strength and perserverance. We were the same blood type so technically, we were in a little competition to see who could get lungs first. I did but she followed shortly after and as I was waking up from mine, she was in getting hers.

Our surgeon, Dr.Charles Hoopes would give me updates on her since she was having a few problems and one time he told me to walk over to her room so I could show her how well I was doing and give her a little boost of confidence. I took the challenge even though I'd barely walked like 20 feet because Hoopes is VERY intimidating and also, I take on pretty much any dare. So I was gonna cheat and ride my wheelchair up to her room and then walk past her window. But nooooooo, I get to the end of the hallway and Hoopes is sitting there all omnious so I knew I had to walk because he would be evaluating me. I made it and I remember the pure joy on her face when she saw me. They made me go after awhile though, I think I was raising her heart rate (haha) but it was nice to see her regardless.

Kristi and I and Ila who later had a heart transplant were known as the three stooges because we all got along so well and supported each other during these crazy times. I remember seeing her walk around with a mask on (because we were at high risk for infection after transplant) and I was proud to know her and everything she'd been through. We'd done it together. And through these years we've stayed in touch through the phone, letters, and recently through myspace. We'd joke about how much the our medications suck or how we think Dr.Hays is hot and now, I'm all alone.

To me this is more than a death. A big part of me has died inside too. She was my equivalent in so many ways and it's like I see myself in her. I know I'm a ticking time bomb but I can usually try to put it out of my mind and deal with it. Losing Kristi is like losing hope. She was just like me, young and just wanting to have fun. She lived life to the fullest, for sure and at least I can say that she knew how to make the most of it all. How I can lose someone so strong like that is what tears me apart. I honestly don't have words to express exactly how I feel and most people won't even understand but if you're reading this, then please allow me sometime to reflect on this all. If I don't talk to people for awhile it's not your fault, I just need time to put all this together and tell myself that this is really happening. In the meantime, I hope all of you will think about this and are inspired to live like she did because you never know when your time might come. In her last blog on June 25th, 2008, Kristi wrote this:

Love yourself, make peace with who you are and where you are at this moment in time.
Listen to your heart. If you can't hear what it's saying in this noisy world, make time for yourself, enjoy your own company. Let your mind wander among the stars.
Take chances, make mistakes. Life can be messy and confusing at times, but it's also full of surprises. The next rock in your path may be a stepping stone.
BE happy when you don't have what you want, want what you have make do, that's a well kept secret of contentment.
There aren't any shortcuts to tomorrow; you have to make your own way. To know where you're going is only part of it. You need to know where you've been to. And if you ever get lost don't worry; the people you love will find you count on it.
Life isn't days and years, it's what you do with time and with all the goodness and grace that's inside you. MAKE A BEAUTIFUL LIFE....
The kind of life you deserve.

R.I.P. Kristi Daneen Medlen

February 15, 1978-July 18, 2008

moi

I guess I should start out with a little about me and why I've started this blog. January 7th, 2005 I recieved a double lung transplant at the University of California San Francisco. I was 18 years old. I've been through a lot in my life and instead of sitting around and feeling sorry for myself, I like to get out there and talk to or inspire people and hopefully make a difference in someone's life.

It all started when I was 14 years old and I was diagnosed with thyroid cancer the end of my freshman year of high school. I did get the benefit of skipping out on finals but little did I know about the road I had ahead of me. I had a total thyroidectomy and some lymph nodes removed as well. Unfortunately, this was such a difficult procedure that my vocal cord was paralyzed in the process. (This caused a whole different set of problems but we won't go there because it depresses me. ) I did eventually have a surgery to try to correct it but has still left me with a Marilyn Monroe-like voice which who knows, maybe some people think it's sexy. Haha.

The cancer spread to my lungs and the treatment for my type of cancer is radioactive iodine. Radioactive iodine is very cool in that it's so much easier to go through than chemotherapy. It requires me to go on a low-iodine diet before. My kind of cancer "craves" iodine so I "starve" the cancer and then give it a heavy dose of the stuff through a pill that also happens to be radioactive. So in a sense, the cancer seeks it out and kills itself. During this time, I am admitted to the hospital where I am quarantined in a private room and no one can come near me because I am radioactive. Even the food I eat has to stay in my room until I am cleared to leave as they need to take it down to a special radiation garbage in the bottom and hold it for years before they can bury it. My question is, what the HELL is that doing to my insides?!?! Haha. But at least the radiation only focuses on the cancer and leave the reast of my body unlike chemo.Long story short I had a few of those and it was no fun.

After awhile I noticed I was having trouble breathing. Turns out the treatments were causing pulmonary fibrosis in my lungs meaning scar tissue was taking up my lung space. I struggled through school (avoiding wearing my oxygen because I would look "different"-lame.) and by my 18th birthday I was admitted to the hospital with pneumonia. I was put on life support and the doctors expressed to my family how serious this was and that I was in need of a lung transplant.This is where it got tricky. I still had cancer in my body and no one wil do transplants for people with cancer because they see it as a "waste of an organ." So here I am thinking they are just gonna let me die until one of the doctors asked if I had any conncections. I did, with a doctor, Dr. Orlo Clark at the University of California San Francisco (UCSF) who had previously done some surgery on my neck. Turns out they had a lung transplant program there so I went to see Dr.Clark again for yet another surgery and stopped in to the transplant clinic to see if they could take me.

Well, that same trip I ended up getting penumonia again because of the surgery (this was about 2 weeks after I was released the first time.) Anyway, I was admitted to the hospital and again things were critical. They realized how bad I was and decided to take a chance on me and put me on the list for lungs under some direction from Dr.Clark so he could monitor the cancer aspect.So they worked together and I was finally placed on the list after a lot of tests and drama. I had to remain in San Francisco until I was called for the transplant because the time frame in which you need to get to the hospital is crucial. So,the doctors gave me 3 months to live and it was brutal, each day getting worse and losing more hope. Sure enough 3 months later I got really sick again and the paramedics had to transport me to the hospital. My surgeon told my family to call home and tell everyone to say goodbye, they were losing me. If he couldnt "find" lungs in 24 hours I wouldn't make it.He found them and I had the surgery on January 7th, 2005.

I've been through so much with the transplant alone that it's not even funny but it has all made me very wise, its made me stronger, and its made me realize how precious life is. Now, my goal in life is to inspire people, those who know nothing about transplants or organ donation or those who are waiting to be transplanted. I also go through any tests or studies that doctors ask me for because every one is a learning experience for them and if they can learn something from me, then maybe someone else won't have to suffer and we can slowly make medical advances.