Brand New

I've been thinking about the title of my blog. "The Journey to a Brand New Beth". I named it in the midst of the fundraising campaign to raise money for a stem cell transplant. It made sense at the time. I thought I would have this transplant and it would transform my life. I would have remission and hope, hope that my health would be brand new. Since I was rejected for the transplant, it's been difficult for me to see how that old title I chose could still apply. It seemed to me that the same old Beth wasn't becoming brand new. I was becoming a sick girl on a quick road to a short, stationary life.

And then a few days ago I was looking through pictures I had been tagged in on Facebook. I came across a picture that had been taken of me 10 years ago by my very favorite International student at college named Yoko. I was completely shocked at what I saw. I studied the picture and then clicked back to a picture of myself taken just a few weeks ago and couldn't believe the difference. I clicked back and forth and back and forth. An unbelievable thing has happened to me. I absolutely LOOK like a brand new Beth. Feel free to take a look at the difference:




Ten years have passed between these photos but my spirit feels just as alive as I was at 22yrs. I've learned a lot, some big lessons and a lot about love.

#1. I've learned to roll with the punches where my physical body is concerned. Ten years ago didn't look that great but I was VERY healthy. Now, I look ten times better but my body is incredibly unhealthy. Life's funny like that and physical beauty means so little when you're forced to get down to the core of who you are.

#2. Nothing on this planet can replace the love and importance of family and a support system. I'm the luckiest girl on the planet to have people who have sacrificed and continue to sacrifice time, money, work, and many times their own personal preferences to help meet my needs. I hope that when things get hard in your life, and they will, that you have even a fraction of the love and support I have. They make me strong and happy.

#3. I have learned over these 10 years what love is. The completely unselfish, 100% committed, humbling, real thing. And her name is Sandy. My mom has been my biggest teacher, supporter and example of love. She is responsible for me being who I am. (So if you don't really like me much, you might wanna take it up with her.)

#4. This is the biggie. Here's my single biggest passion and I've learned all about it. TIME. As in, it's here. And it's passing by. That picture from 10 years ago shocked me, but I can tell you this, when I look in the mirror I don't see that big of a change. Almost like no time has passed. It just goes so quickly and before you know it, a decade is gone. If I had known at age 22 what I know now, that I would have a progressive, incurable disease. That my lungs would fail me and my biggest dreams would always be out of my reach, OH how different these ten years would have been. The trick here is, we don't get that advantage. None of us. So stop and think now. Stop wasting your time. Here's what matters: God (or whomever/whatever you believe in) and your human relationships. And that's it. Period. Take care of what's important, stop being so serious and get over yourself. Stop worrying about failing someone else. Stop letting someone else tell you what you're worth. Stop waiting around for your future to fall in your lap. Stop being selfish and start being kind. And go live. Enjoy this time because you don't have a lot. Cliche of all cliche's but it's true.

The thing is, I am becoming a brand new Beth. You can see it in the pictures but more importantly I can see it IN me. I want to grow more and learn more and love more. I'm tested daily and trust me, I get testy! But I don't care about money or fame or status. I just wanna love and be loved, just like everyone else. And I'm not afraid to admit it!

The brand new me will come. I'm still on the Journey.

Happy Times!!

About 15 months ago, I made a promise to myself. I promised that I as long as I was breathing, I would never stop living. I want to experience new people and places and things. I have been blessed over and over with opportunities to do just that! Each experience has come about with its own set of unique circumstances. Instead of boring you with long-winded stories and commentary, I decided to put together a picture blog of the past year and a half. I have included as many events and traveling adventures as I have pictures of...some are not represented but every single one has made my life richer and fuller!




Sugarland and Keith Urban concert in Nashville!




Miranda Lambert at Ryman Auditorium with Erin!



Sara Evans in Indy with Claire!



Gatlinburg getaway with Emily, Erin, Rachel, Rebecca, Kasie and Vanessa!



Panama City Beach with my dad and friends. Nov 2009



Zac Brown Band with Emily at the Ryman!



New Years Eve at BB Kings in Nashville with Emily, Erin, Rachel, Sarah, and Vanessa!



Visiting my brother and family in North Carolina. Feb 2010



My niece, Lydia born 3/8/10!



Bon Jovi concert in Nashville with Claire and Rachel!



Memphis with Erin!



Claire and I spent a week in the Monterey/San Francisco Bay, California area. This is Pebble Beach.




Patty Griffin concert at the Ryman with Claire, Emily, Rachel and Erin!



Panama City Beach Girls Getaway! Fun in the sun with Emily, Erin, Rachel, Vanessa and Kasie!



North Carolina beach vacation with my brother's family, my mom and stepdad!



My 32nd Birthday dinner with Erin and Rachel at The Melting Pot!



Dinner pre-Chelsea Handler stand-up in Nashville with Carin, Erin, Emily, Vanessa and Rachel!



First time at Lucas Oil Stadium for Colts and Giants game. Colts win!



I got to meet Chris Franjola after his stand-up act at Zanies in Nashville!



Panama City Beach for golf with Emily, my dad, Barb and their friends!



Colts game number 2!! Ochocinco and T.O. were no match for my Colts!


I consider myself incredibly lucky and I am more than excited for all the things to come!

If we're talking about clouds, are they 'grey' or 'gray'?

My bedroom is warm and my TV is fixed on ESPN but the only sound is the hum of the ceiling fan. These are the dangerous times. It's Thanksgiving eve and here I am, thinking. It sounds a lot like complaining to say that the holidays just don't have the same shine they used to. At the same time, the more I think about it, I don't think that idea is all that uncommon. As we get older, I think the way most people look at the holidays or feel when they come around, changes. Life changes. Hearts get broken, loved ones pass, illness strikes, homes are lost...lots of things skew our view.
For me, as a child I was the type that loved every second of every holiday. And this time of year especially, I was happy and filled with excitement and just plain ol' happiness. Being with my family, helping prepare meals, holiday shopping, just the cool air and decorations energized me. Then my parents' divorce came. Some of those things changed and felt and looked different but over time I adjusted. So I guess you could say there was a tiny gray cloud over some of my favorite days.
Just a few weeks before Christmas, sometime in my mid-twenties, I met this guy. And I admit, I fell quick and hard. I lost my mind (in a good way) over that man and I spent a year in total happiness and bliss. I was in love and I found the man of my dreams and I trusted and believed in him completely. That next Christmas Eve I found myself in one of those movie scenes where the guy is at his girl's family Christmas gathering and he's getting on his knee in front of everyone there telling her how much he loves her and asking her to be his wife. I said yes! Fast forward a few months and he had changed his mind and wrecked my heart. The blow was devastating and the gray cloud grew a little, taking a wee bit more of my easy joy of the season.
Almost exactly two years ago, I had my very first Pulmonary Function Test. I knew something wasn't right and I was scheduled to see my Rheumatologist I'd seen a couple times for this weird thing that happens to my hands when they get cold. My little sister came in the room with me and as I took my first breath and following the instructions of the tech, blew as hard and fast as I could into that machine, tears immediately began to fall. I KNEW something was wrong and not just a little wrong, but life-changing wrong. Days later I found out just how right I was. I had scleroderma. Diffuse Systemic Scleroderma. And yes, it's just as scary and terrible as it sounds. At 30 years old I was told I had a progressive, incurable disease. And right in the middle of my 'joyful season'. Talk about gray cloud growth!
Over the last two years I've had nearly every up and down and all around experience you can imagine. Most of the people that will read this know, I'm holding my own at this point and I'm doing the best I can. And this year, that gray cloud is present, it always will be. It's part of life. Everybody grows one.

Be happy and thankful. I sure am. My bedroom is warm, UK is getting handled and I get to eat pumpkin pie tomorrow!

That list you get from a bucket

Part of this journey for me has been learning and accepting that there are things I have always wanted that just aren't possible. Lifelong hopes and dreams have been eliminated by scleroderma, a terminal prognosis and lungs that just won't stop scarring. Having a baby or buying my own home are completely out of the realm of possibility.

I have recently read tons of FB updates about friends getting pregnant, having babies, getting married, buying a new home, and starting new jobs. I have been genuinely happy for each of them but I would be lying if I said there wasn't a part of me that feels a sting each time I read them. There are all of these huge milestones in life that any normal person strives to reach and they just aren't going to happen for me. And that makes me sad sometimes.

Soooooo, instead of feeling sad, I dream about other things. And I made a list. It's a list of things I very much want to do and as of right now, am still able to do. It's not a list of EVERYTHING but it's a great start. These things are not in order of importance and I know some of these items may seem ridiculous to some and out of reach to others, but they're MY dreams and I can hope for them if I want to.

Beth's Bucket List

-Spend a week in Florence, Italy
-Visit a luxury spa for a day of pampering
-Ride the El in Chicago
-See Mary J Blige in concert
-Go to an NBA game (preferably a good team and not the Pacers)
-Eat a hot dog from a street vendor in Chicago and NYC
-Take a carriage ride in a large city
-Eat at a five star restaurant
-Have one more first kiss
-Watch Emily, Claire, Erin and Rachel wrestle a pig
-Go to the baseball Hall of Fame
-Sit in the Chicago Cubs dugout
-See a broadway musical
-Try Moroccan and Ethiopian food
-Be in a commercial or an extra in a movie (no acting please)
-Meet a member of the Indianapolis Colts
-Live to see Hannah Beth Scott graduate high school
-Attend an Olympic event
-Ride a passenger train

I Guess It's About That Time

It's been three months since my last visit to Vanderbilt. On Tuesday, I had appointments to see 4 different doctors and have a PFT (Pulmonary Function Test) done. Yes, that's a ton in one day. Yes, it was exhausting. And unfortunately, it turned out to be the most disappointing day since the whole Chicago/birthday fiasco in September.

See, I've been busy the last two months. I've been so blessed and reasonably happy. I've gotten to take a trip to California and one to Florida. I've spent lots of times at events and concerts with friends and family and to be honest, I've felt pretty good. Meaning, I've felt emotionally pretty good. I have some exciting family time and another beach trip planned. So, I've been looking forward to the next month. I walked into that day of meeting with doctors and truly expected to hear from them that I was relatively stable, maybe even a little bit better. What actually happened was so unexpected and made me feel so defeated.

My PFT results were more than 15% decreased since my last one in April. After a 6 minute walk test, we also found that my oxygen saturation is falling from the normal range when I'm at rest, down to the mid 70s with activity. If you're not a medically minded person, this is NOT good. As a matter of fact, it's "not good" enough that I'm now an oxygen tank totin' gal. I don't necessarily have to use the oxygen when I'm just sitting around but I have to use it when I'm out and about. I won't pretend that this is no big deal. To me, it is. It feels HUGE. It's incredibly emotional and uncomfortable for me. I feel sad and scared about it. I did know that this would happen eventually and yes, I realize it will make me feel physically better, but unfortunately that doesn't take away the less than desirable, accompanying emotions. So, this is an adjustment period. Adjusting to the stares and whispers, the sad looks and eyes full of pity, the running into people I know, the loss of parts of myself and my freedom.

In a choice to be positive, I say this adjustment period will be short. I have great support and just a flat out natural desire to be out in the world. I hardly expect an oxygen tank to be enough to stop me.

What if...

I have to get up sooo early tomorrow. Ok, so it's just 6:30 am and many people get up way before that, but I am not usually one of them. I'm heading to Nashville...again. I have another appointment with my rheumatologist, the 4th in the last 6 months and I actually have another appointment scheduled that not many people know about.

Several months ago, I was made aware of a few other people with scleroderma getting lung transplants. Although I have known about it for awhile, I hadn't really considered this as an option for me since a lung transplant won't make scleroderma go away. I mentioned it to my doctor about a month ago and she seemed to think it was a possibility considering I don't yet have any other severe system issues outside of my lung function. So fast forward to tomorrow and I'm meeting a lung transplant specialist at Vanderbilt. I wouldn't be able to have the transplant there, as they don't do them for scleroderma patients. In fact, there are only 3 hospitals in the US that do, the most likely being in San Francisco. I'm just going to meet with the specialist tomorrow and she'll do a sort of pre-screening to see if I'm even a possible candidate for referral to a program.

About a week ago the tranplant specialist sent a new patient packet to me with all the information I'd need and in it there was a booklet with facts and program outlines. I read through it and came to the section that listed the qualifications to be considered for a transplant. I stopped when I read that a candidate would have a life expectancy of 18-24 months. I'm telling you, I knew this already. I know this. But there are these moments that happen, where the reality of that timeline becomes acute and almost shocking all over again. Then I realize how precious my time is.

In the past couple of weeks, at times, I've wondered if I've already lost it. I almost can't believe I'm even considering something like this again. It takes a lot of energy and there's so much emotional and mental strain. And then I think, but what if you could live to celebrate your 40th birthday? What if you could see your oldest niece turn 18? What if you were made well enough to walk around Rome one day? I suppose all the "what ifs" are worth at least the first visit tomorrow. Then, we'll see.

This is what they're for

I have been so lucky to have many good friends in my life. Some from high school and college, some from church and work, some from living in Nashville or Louisville, some from random places or who were friends of friends. Even now, I have more people who I would call friend than I could name. Yet there is this group of girls that are so close and have been so important in my life that the word 'friend' doesn't quite fit.

Sure we do the normal friend things. We laugh, we talk, we cry, we complain, we celebrate. But these friends of mine aren't normal. It's not normal to be a young adult and have a close friend who is sick. It's not normal to sit with your friend during chemotherapy or sell half pot tickets at a fundraiser for her stem cell transplant. It's not normal to have to carry your friend's luggage or open her sodas. It's not normal for your friend to tell you she's dying. Before I found out I was sick, I would have told you I had great friends. Now, I know them, appreciate them and love them in a way I didn't know I could. I can't believe what they've dealt with from me and that they are willing to endure more.

Everything I want to say seems kind of cheap. I definitely feel like nothing I can write down is going to do justice to the privilege of having each of these girls in my life. I do want to say a few things. I want to write your names down and share just a bit of my heart about each of you.

Rachel, you are loyal and loving. You believe in me and support me no matter what. I never worry about your judgement or whether or not you'll be there. You let me go on and on about the same crap and you still listen. You, my friend, are the real deal.

Rebecca, you are probably the most thoughtful person I know. I have never, for one second doubted that you love me and you care for me. I know I can count on you to look out for me and you are always first in line to help. And really, what's Chicago without Peter Cetera??

Erin, girl you crack me up. We laugh so much together and I love every second of it. I feel privileged when you share your heart with me and I am so grateful that you allow me to share mine with you. I look forward to taking those ducks in the Pimpala to get some biscuit food.

Emily, I've known you since puberty. I remember meeting you in church in Junior High, being on the swim team in high school and you letting me invade your group of friends at the lunch table. We share similar taste in music, movies, TV and sports but thank God we would never like the same men! You're my fellow planner and adventurer and don't forget that "we only have each other."

Kasie, we've been friends for the least amount of time but most of the time it doesn't seem that way. There are many years between us, but there's a sense of familiarity in your character and values for me and your friendship has felt easy and natural.

Vanessa, I love you and I'm so glad we're friends. See, I can say that with no Captain! Can you??? Seriously, you've been such a great listener and a constant cure to my loneliness. I really am so so glad that we've grown to be such good friends!

Claire, you're the most difficult to put in words. We probably don't have the most 'everyday' things in common. We don't spend the most time together. We don't have similar families or dreams or beliefs. Still, I don't know that it would be possible for you to be any closer to my heart.

I can't believe you're all still hanging out with me. But I'm so glad you are. I am certainly the most blessed person to have friends like you. There are probably a list of things about me that drive you nuts and unfortunately I will likely give you many opportunities not to be proud of me but in this moment, as I write this I am filled with the certainty that you will be here with me. You'll walk, you'll fight, you'll sit, you'll laugh, you'll cry and you'll hold my hand. Thank you, my buddies, my chums, my comrades, my confidants, my cronies, my pals, my companions, my sisters, my friends.