Love & Marriage: I blame...

I was engaged to be married once. Almost ten years ago, my mid 20s. I dated this guy for a little over a year and he proposed. I said yes. We planned a wedding but before we got to the wedding, he decided someone else looked better. Three months before the mostly paid for wedding I get the news over the phone. Until that point in my life, I didn't know what it meant to be sad. I was devastated. Time and the hope of meeting someone new did its work on me. I kept it movin'.

So, today I was looking through some old pictures and I see the one and only photo I have of myself in the wedding dress I bought a decade ago. It's a photo of me in my purchased gown at my first fitting. Besides looking at that picture once or twice back then, I haven't seen that dress since. I paid for it and left it at the store. Ignored the boutique's calls for me to pick it up. And when I looked at that picture, I felt sadness and regret. A sincere longing for another chance.

Pause! Let me make clear what I'm sad and regretful of, what I want another chance at doing. It has nothing to do with the guy. He can have his "better" choice and whatever else. I don't have anything to say about him. I'm over him. What I'm not over, is the marriage. I'm not over having someone to share my life with. Life is a series of ups and downs, like a rollercoaster. It's fun and exciting and boring and sad. I unapologetically want someone to go through all of that with. So looking at that picture of me in a wedding gown makes me sad I never got to dress up in that beautiful dress and make a promise in front of my family to share my life and grow a family with a man I loved. I regret that I spent too much time more hung up on whether or not I was good enough than just going for it. I would give anything to have another chance to meet a great man, fall in love, have our wedding and then get to work living, together. I never invisioned this being a perfect life. I just invisioned it being a full life.

The truth is, now it's impossible. When I was diagnosed with Scleroderma that included all my lung involvement, I was told 5 years was the average survival rate. This fall is 5 years. I'm still holding on, although it be by a thread at times. So ya know it's safe to say finding a life partner at this point is not happening. No children of my own either. For some, that would be no big thing but for me, it's a rather painful subject. Being a mother is something I have always hoped for.

These are just a couple of the things Scleroderma has taken from me. The emotional pain that lingers from the death of this dream is particuarly foul. Looking at the picture of that wedding gown and feeling a fair amount of disdain isn't the dress's fault and it's not my ex's fault (totally), and it surely isn't my fault. It's Scleroderna's fault. And Scleroderma is a bitch.

I had such a beautiful & happy Christmas...

I had such a beautiful and happy Christmas I fully expected the afterglow to at least last until New Year's. Surprised the crap out of me to find that shopping would be the thing to kill my good mood.  For months both sets of parents have been asking me what I wanted for Christmas. A list, a thought, just an inkling of an idea of something I'd like. My answer to both, repeatedly was "I don't want anything" or "I can't think of anything I want". That was 100% true. It's not that I don't appreciate gifts but I literally have everything I need. I'm not being all deep and meaningful and only saying the good, right thing. I haven't been able to figure it out myself until today.

My parents both solved the present dilemma by giving me gift cards so I can pick out and buy whatever I want. Usually this is an awesome gift because I love shopping. In the past year, the amount of shopping I do in stores has almost disappeared because I can't really breathe well enough to walk. This is the part where I express how much online shopping has saved me and my sanity. I can still shop for sure and have depended on the trusty FedEx man! So, for Christmas I get all these gift cards and so I hopped on the internet to see what I might find on sale....

One site and nothing grabs me. Second site and I see a couple things I like but don't buy. Third site and I see some great sales on a couple things and then I see these beautiful brown leather boots. And the boots are half off. They'd take all of my gift cards together to buy. I don't care. I don't want anything anyway, I'll be happy with boots. I get to the checkout page and I think, "Ok I'll wear these at least a good handful of times before winter is over and then..." My eyes immediately filled with tears and it registered with me why I hadn't been able to ask for gifts for Christmas or buy any of the stuff I liked online. It's just stuff.

I'd spend a couple hundred dollars on those boots, wear them 5 times or so and then what would happen to them? They would see half a season of wear by someone who doesn't go anywhere 5 or 6 days of the week. The same would apply to any clothing item, really. Here's the truth of what got me: IF I am here, alive, next winter, I can promise you it won't be 1 or 2 days a week that I'm out and about. It will be zero. I'll be in my bed. I'm not being negative. I'm being real and serious. And when it comes down to it, I don't care about any damn boots. They simply don't compare to what I really wanted for Christmas. Time. Time to be normal. Time to love my family. Time to enjoy God's creation. Time to breathe.

My parents would give me anything. Just so happens the only thing I want is something they can't give me.

The shopping epiphany is a total bummer. Hopefully I'll feel differently/better tomorrow.

StoryCorps and storytelling!

In August, my brother and I had the privilege of sharing my story through an interview recorded by StoryCorps. StoryCorps is an amazing organization whose goal is to preserve stories of regular folks like us by recording them from our own mouths! And really what better way is there? We loved our experience and highly recommend anyone taking a loved one to record your story as well. We hope to have some parts of our interview available to listen to soon! Until then, I do have a link to a blog post that my brother and I were featured in from StoryCorps. Fell free to check it out!  StoryCorps Blog!

Now what?

This is what I'd like to do: I'd like to just present the issue and have everyone I know, well or otherwise, vote yes or no. Just make up my mind. Choose for me. You guys can do that, right? Make just this one decision for me. No biggie. Easy. Well, you know, except for the part where my life depends on it. I know, I know, not so easy anymore. Tell me about it.

I have pulmonary fibrosis and pulmonary hypertension secondary to scleroderma. If you're reading this and you don't know what that means, I have to assume you have access to google. So there's no cure for this stuff. I'm terminal. In the past 2 years, I've gone through the evaluation process at both Vanderbilt University and Cleveland Clinic to be listed for a double lung transplant. Both times I've been rejected. Neither were willing and/or able to take on the risk of a patient with my disease coupled with the fact that I have an esophagus that doesn't work. Since January I've been working to adjust to and accept the fact that I'm out of options. There's no fixing it or putting it off. The time I have left, is the time I have left. Period.

Except two months ago I met with my pulmonologist at Vanderbilt for a regular checkup and he told me maybe that's not quite the case. The University of Pittsburgh Medical Center has begun doing some transplants for patients like me. My doctor gave me some information and said to go home, think about it and let him know what I want to do. Obviously, that's not been an easy decision for me. Two months have already passed and I'm no closer to deciding. I know it sounds crazy. If I have a chance to live longer, why in the world wouldn't I take it? Why am I not running to Pittsburgh?

It's just not that easy. There are so many catches to this it's crazy. First of all, the evaluation process alone for this is the most intensive week of hell you can possibly imagine. I'm willingly signing up for something I swore 9 months ago I would never do again. Blood draws, IVs, scans, xrays, ultrasounds, freezing cold temps, etc. AND you want me to pay you $25,000 to let you put a tube up my nose and down my throat while I'm awake?? All that to tell me that MAYBE I can be listed for a transplant. No promise of how long I'd wait for lungs. No promise that I would survive the surgery. No promise of how long I would live afterward.

We're talking about one of the most painful, intense surgery recoveries possible. Assuming I live through the surgery, I'd wake up on a ventilator with chest tubes, IVs in my neck, a catheter, an incision that spans from armpit to armpit and a feeding tube. No eating food for like 3 months? Whaaaa?

Let's say I put away the fear of pain and just think about what I'd be gaining. Here's the truth: The average life of transplanted lungs is 3-5 years. About 80% of recipients live 1 year, with most of that first year being rehab. Right at 50% of patients live 3 years after transplant. Only 50%. That's not a lot for only 3 years. And with one year being recovery and rehab, what will the quality of life be like?

Then there's the financial cost. A couple hundred thousand for the surgery. The constant cost of drugs, doctor visits, travel to Pittsburgh & other medical supplies needed for the rest of my life. Yes, I have Medicare but it's not free and it doesn't pay for everything. Not even close. I have the most generous parents in the world, but there's a limit to their resources too. The weight of the financial stress doesn't even compare to the emotional stress to consider. I'm quite familiar with the building of hope. And the crashing as well. If this only affected me, I could make this decision. But it doesn't. It includes and affects every person that loves me. Not to brag but I have a heck of a lot of people who love me. I deserve none of it, but I have it.

I think about all of that. And I think, yeah Beth, just let go. It's so much. It's too much. BUT what if I could breathe again? Just breathe freely. What price, financial or emotional, do I put on that?

How much of this is bravery for daring to hope and how much is actually my courage failing me? Is it refusal to give up or a fear of accepting the end? Is the pay off worth the sacrifice? Being sick isn't fair but what about my responsibility to what's fair both emotionally and financially for my friends and family?

I don't expect anyone to have the answers for this. This is just what's happening in my head. A little glimpse into how this is all going down for me. I really don't know what I'm doing. I'll holla.

My Celebrate Day

Thirty-four years old. THIRTY-FOUR years old. I remember when I thought that was so far away, as if I'd be 20 forever. My birthday will be here in a couple days and for the first time in my life, I can't wait to celebrate.
I've always loved my birthdays. I LOVE getting gifts and having cake and everyone telling you how much they love you. What normal person doesn't love that? I can honestly say though, that I've never actually celebrated my birth, my life, what having another year means. This year will be different.
For the first time this year, I won't care that I don't have the career success I think I should have. I won't feel inferior for being in my mid thirties and not being married or having children. I won't be embarrassed that I'm living with my parents. (How can the most important gift be embarrassing?) I won't be stressing over whether or not I'm beginning to look that year older as well.
NONE of that matters. What matters is that I'm here. I made it. The doctors guessed 5 yr and I've made it 4...so far. I will take each and every minute, hour, day, month & year I can get.

I am going to celebrate on Friday and be thankful for everything that I've been given. The life I lead isn't a glamorous or wealthy one, but it's a true and rich one. No matter the struggle with my lungs, my life is a good one. I am overjoyed to see another year. I hope you are thankful and celebrate each new one that you are gifted.

What more could I want than to just LIVE

Late Night

There is approximately 0% chance that its wise for me to be blogging at this hour. Maybe less than that. Like I care. I just have a few thoughts and feelings I wanna force on you.

1. I love driving. I'd very much like to go on a roadtrip of 3-6 hours once a week. If I can help it, I do. Driving is probably what I'm best at with a close second going to roller skating circa 1990. If not for my continued ability to drive, I'd have given up by now.

2. I've learned I like music that tells a story that makes me feel something. A catchy hook only ends up on my nerves. Give me a singer/songwriter any day over some teenage boy dancin around in skinny jeans talkin' bout how he loves his "baby". Shut your face up.

3. I rarely get as excited for anything as I do the Summer Olympics. If nothing about it interests or captivates or moves you, then maybe your soul died. Also, it's the OLYMPICS!

4. I never ever thought I would say this but I miss dating. I thought it was torture when I was into dating and now that I can't really date at all, it's all I wanna do. I'll be 34 in September a date would be nice. Among other things. It's the excitement and anticipation. The great times when a man surprises me with being better than I imagined and even the times when it went all wrong. All good stuff. I'd take it back in a second.

5. 96 WSTO crowned me the dance champ in 7th grade in the Teen Garden at the Schweizer Fest. Maybe you were there. If not, I'm sorry you missed me winning 2 free games of bowling. I was probably really good at that too.

6. Even if I COULD run, I wouldn't. It sucks. And I'm not gonna pretend it doesn't. All you people talking about running and dieting and losing weight all over FB, well I'm very glad for you. I, however, don't feel the least bit guilty that I have no interest. Ya'll get healthy and I'll eat my lunchable and drink my Dr. Pepper. Thanks.

7. I feel like there's a difference between being nice and being kind. To me, being nice is more like being agreeable. Like you'd say or do whatever to remain in someone's good graces. I prefer to work on being kind. Respectful. Considerate. But honest. You can be honest & be kind. I feel like I cannot always be honest & be nice. Maybe it's just semantics but that's how I think about it.

8. I'm done telling you things. If you read this for real, I'm surprised and ashamed of you at the same time. Congratulations.

I. Am. Scleroderma.

I had my story published on the Scleroderma Foundation website! Feel free to check it out here:

http://scfo.convio.net/site/News2?page=NewsArticle&id=5316&security=1061&news_iv_ctrl=1101

Peace.

For me and for you.

As I'm trying to get some sleep, I came up with a few questions and I'd like some answers. I mean, what are we doing? What are you doing? WHAT AM I DOING?

Why are you taking things that aren't yours? Why are people being killed because their skin color makes them look suspicious? Since when is sexual irresponsibility and abandonment of a child's financial and emotional needs the norm? How is it ok to tell anyone whom they can love? Who do you think you are to spread vicious rumors about others? Why are you drinking, snorting or injecting mass amounts of poison into your body and calling it entertainment? When is objectifying women and abusing children ok? How could money ever be worth more than a human life?

Aren't there enough horrible things that we can't control? Why the hate? For others? For yourself?

Are you helping? Do you even want to?

I do.

If you've never taken Ambien, let me tell you what it's like.

"So how come when you eat green broccoli or orange carrots or red strawberries they all come out as brown poop? What happens to the color? Where does it go?"

That is a real text, word for word, that left my phone late one night. I cannot tell you how many times my friends have replied to me asking if I took Ambien already. Many mornings (late mornings) I wake up to texts asking me if the messages from the night before were Ambien-induced. Almost always my next question is, "Oh no, what did I say this time?"

This is really what my life has become. And it's totally hilarious. I need Ambien to sleep at night for a bunch of reasons I don't want to explain. There are some great and not so great things about it but mostly I get good sleep and have a bunch of funny stories from it.

Many of the texts I've sent are either really inappropriate or sound more nuts than I feel comfortable sharing. I know this is borderline but it really happened and was my first real "adverse" reaction to taking a sleep aid. My younger sister is a nurse and works night shift so I text her a lot to chit chat about stuff or make fun of things. One night I sent her a text saying something like, "Man, I took that Ambien and I've been awake for awhile. I have this weird urge to go lay on the living room floor and roll around. I feel like maybe this is weird, right?" Not surprisingly, my sister called me immediately and informed me it was neither normal nor ok to roll around on the floor. Right. Gotcha.

Let me just add at this point, if you've never taken a prescription sleep aid, you gotta understand what this stuff does to you. I will literally not remember this stuff I do and say. Or sometimes I will remember having a thought about something but have zero recall of voicing the idea or acting on it. It's like the hours between midnight and 10am are real cloudy.

Speaking of mornings in my house, I live with my mom and stepdad. I keep mostly to myself in my room, which I consider kind of my own little home. I have everything I need in here except a kitchen but really, I don't even need one of those. Anyway, this particular morning I woke to the strangest thing. My mom had walked into the room and it kind of startled me awake. She said, "What the hell are you doing?" Me, being still out of it a bit replied, "I was just looking for some beef stew." Sounds ridiculous but it gets worse. I was in the front room of our house and had somehow moved two wingback chairs face to face and was laying across them with a blanket, asleep. I don't know why. I don't remember going out there or moving furniture and I have no idea what beef stew had to do with anything.

This stuff is the reason my mom lectured me when I first started taking Ambien. She told me she was worried about me and that she's heard these stories of people taking it and then leaving their house and having sex with their neighbors. I laughed so hard thinking she was crazy. Now, I'm not saying I would do that, but honestly, I can't believe the things I HAVE done and said under the influence of it.

Late night internet browsing has become risky. A couple times my browsing has becoming purchasing and caused some mild panic. I got an email one afternoon from Amazon saying my order had shipped. I scanned down the email, not remembering ordering anything to find I had ordered 9 books. NINE books. Thankfully, they were all used and I read each and enjoyed them. Then there was the time I got a package in the mail I wasn't expecting and opened it to find a totally awesome ring. Then the panic set in and I realized I had no idea where it came from or how much I had spent on it. Once again, thankfully I found that even when drugged, I'm a bargain shopper with good taste. Also, I learned my lesson. The money gets put out of sight at night so it's not so easy to use it.

By the way, I'm not making this stuff up. I realize it sounds crazy. And it totally is but I'm having the best time writing this stuff down and laughing. Out loud.

My poor friends have been good sports too. I went on a trip to New Orleans with my friend Vanessa and it was kinda rainy and cool while we were there. We came in one night and I was cold so I turned the thermostat up to 75. Man, Vanessa was a good sport and didn't say a word. She knows I get cold. I had taken Ambien and we were in bed trying to sleep. The rest of this story is what happened as told to me by Vanessa. I couldn't fall asleep for anything and even under a down comforter, I was still freezing. I loudly call her name and she startles awake and asks me what I want. This is how the exchange when down:
Me: I'm cold
Vanessa: Girl, the thermostat is on 75.
M: I know, but I'm still freezing. Like to my bones.
V: Well, do you want my comforter too? I'm too hot and I'm not using it.
M: No, cause you're gonna get cold. My feet are like ice.
V: Are you wearing socks?
M: No, they're way over there in my suitcase.
V: Do you want me to get them for you?
M: Yes.
At this point, Vanessa gets out of bed and gets socks from my suitcase. She walks to my bedside and holds them out for me to take. Instead of reaching for the socks, I throw my blankets off and shove my foot in her face. I mean, I straight up stuck my foot out like "you put them on me." And she did. I'm not sure how she resisted cussing me out, but I appreciate the service, girl!

My absolute favorite Ambien story is also a great lesson learned. Or well, better a lesson I've learned and am trying to stick to. I was visiting my girl, Claire in Indy and when I woke up one morning she asks me what I meant by my Tweet the night before. I thought for a second and was like, "What tweet?" Then as often happens to me, I get this slight rush of panic and immediately check my twitter page and this is what I read, "I inevitably do the uncool thing. #ineverpromisedyouarosegarden". Whaaaaaat??? I don't remember exactly how long we laughed about it but it was definitely a long time. I have no idea what I was talking about or referring to or implying. Absolutely none. On top of that, why a Patsy Cline song? I haven't heard that song in a hundred years. Claire said she'd love to know what was going through my mind when I wrote that. I can honestly say I don't even wanna know.

"It would take an acrobat and I already tried all that"

I put this weird pressure on myself to make sure everyone I'm in contact with feels comfortable. I especially want them to be comfortable with my illness, my death. I feel like I need to only write positive things on public forums, or just keep my writing to a minimum. So, I keep a lot in. Really, think about it. No one wants to be the drag on someone's perfectly good day. When I first started this blog, I envisioned writing so much more frequently. The truth is, I had no clue what this would be like. I had no idea what it would take to fight.

Reality is, this is ugly. Attempting all that "I'm ok" and "It is what it is" talk is just not possible all the time. Not if I have any desire to be honest. The simple truth is, there's no point in having this blog or writing one word down if it's not real. I don't have the time to waste. Frankly, neither do you, although most think they do.

I'm not saying all that talk was an act. It wasn't/isn't. I just don't know that it applies anymore. I can't keep worrying about whether or not strangers and acquaintances think I'm a drag. I'm expecting a bit much of myself there, I'd say. No one has to read this if they don't want. I'm not apologizing or avoiding anymore. What good does it do me at this point to care who thinks I'm cool enough or together enough or whatever? None. At all.

Here it is, man. I'm not cool. I'm not together. Not even close. I'm a hot mess. I feel all of the worst possible things you can imagine. I feel scared and anxious and sad and bitter and cheated and there's nothing anyone can do or say to fix it. Absolutely nothing. And I hate it. No matter how much my family and friends love me they can't make this go away. There's not enough money in the world to buy me out of it.

Since my appointment with my doctor on Monday where we discussed my end of life wishes, I haven't been able to feel normal again. Up until this point I could always find away to put it out of my mind and truck through each day looking forward to whatever was planned next. I try to keep myself busy so I always want to keep going. Now, I can't seem to figure out how to push this to the back of my mind so I can just live. Each day, just a little. I want to feel alive enough to keep looking forward when the reality is I want to go anywhere but forward.

How do I do that? I don't know. Unfortunate thing is there's no handbook for this job. Trust me. It's a job. It's hard work to breathe. It's hard work not to be a jerk when all I ever am is tired. It's hard work to remain sane when some days all I want is to remember what it feels like to be a woman. A young, single woman with dreams and desires and all of those normal things. Yes, they still exist in my head and my heart and being confronted with them everyday and working to ignore them is really hard work. The hardest work is seeing the people I love hurt because of what scleroderma is doing to me. I'm more than sick of all of it.

The one thing I will hold back is the many expletives that really won't make anything I'm saying any more true, no matter how much I feel like saying them.

Bottom line is, I'd give anything to be going to sleep tonight in my own little crappy place with a totally flawed significant other only to wake up the next day to go to a job I only marginally like and barely pays the bills. I hated those days when I had them. Right now sounds pretty close to paradise.

The self indulgence was nice for a bit. Thanks.

Pause. Let me just say somethin'

I've been feeling a rant coming on for a little while now. Maybe it's not a rant as much as it is my need to share my feelings and help you out a little. If you sense a bit of sarcasm or an attitude, you aren't imagining it.

Attribute it to my desire to believe the best about people, but I seem so shocked all the time at how little people actually think about others. Thoughtfulness and consideration is a hard thing to come by. Understanding and acceptance? Even harder to come by. I've been feeling like I need to get a couple things off my chest...

1. IF you know me, then yeah, you know I'm sick. No doy. You know I have scleroderma. You know I have both pulmonary fibrosis and pulmonary hypertension. You know I've had an emotional, difficult ride through pursuing every treatment on God's green Earth. You also know, none have worked or been available to me. The prognosis is terminal. Time is limited. Alright, so now that this is clear, let me make something else clear. Please please think before you say things to me. I know it's a difficult spot to be in and knowing what to say is not always easy. So, how about this, JUST SAY NORMAL THINGS. I'm still me. There's no reason I can think of that I should hear either of these two phrases from anyone (including in emails, text, etc.): "You poor thing" or "Well, it could be worse". Huh? Think about that for a second. Want some quick info on how people like me die? They suffocate. Literally. So, nope, can't think of a way that could be worse. And yet I still don't want your pity. Or at the very least, I don't wanna know about it. You can feel how you feel, but don't tell me you feel sorry for me. Please!

2. Please don't be overly nice and talk to me in that sweet, fake concern voice. I'm not fragile. I've proven to myself that I'm much stronger than I ever thought. And I'm not saying I won't be nuts by the end of all this, but treating me like I'll break if you don't fall all over me when you see me feels condescending, even if it's not the intention! If you see me, just be real. If you're glad to see me, then say so. Just remember my body might not work well, but there's nothing wrong with my mind and really nothing wrong with my spirit at this point either. I'm doing ok. I think the biggest problem I have with this is, be kind, supportive and respectful to me because that's who you are. We could all do a little more of that in our treatment of others. If you are already kind and respectful then when you see someone that's going through some stuff, you don't have to flip a switch and be on. Just make it what you do. Always.

3. Which kinda brings me to my last gripe. You know what's really annoying? There are so many people who are straight rude and inconsiderate, especially to people who use wheelchairs or other ambulatory assistance. Now, I know what you're thinking. I just said don't be fake. I'm gonna tell you though there is a ton of area between being overly nice and being a straight jerk. I'm not gonna lie, there are advantages to using a wheelchair sometimes. No lines at the airport, close parking and usually people are nice enough to hold doors and make room in an elevator. Travelling a lot with my friends has really opened my eyes to what people with disabilities really have to deal with.
The worst is that if I'm in a wheelchair and you have a question, I'm gonna need you to ask ME. NOT the person pushing the chair. Look at my face and realize I'm making eye contact and I'm talking to the people around me. Obviously, you don't need to ask the person helping me if I can walk. I can answer that question. I can tell you if I want a refill. I can say excuse me and please and thank you. For the longest time, I thought the stares were the worst but the assumption that because your body doesn't work, that also means your mind doesn't, is so rude.

That's probably enough complaining. Just lettin ya in on a little bit of me you probably didn't wanna know about. Oh yeah and don't worry, I'm not into cussing people out in public or anything so you can still talk to me when you see me out. Ha!

I'd say that's my quota of run-on AND incomplete sentences. Way too many ill-placed commas and plenty of sentences ended in prepositions for one day. Clearly, I'm not a writer but I play one on this blog.

My first love.

After my parents' divorce, every weekend and every other Tuesday night my younger sister and I went to my dad's house for visitation, as the court called it. I can remember feeling the same way everytime I went. I felt confused and hurt. I was anxious about making sure everyone knew I was loyal to my mother. She didn't ask me to and no one asked me to betray her in anyway, but as a 10 year old, that's not how it felt. There was a stretch of time where I would go to my dad's house and then feel like I just wanted to escape. Everything about going to a separate home to see my own dad just made it more and more real that my parents' marriage was over and my life was never going to be the same. I wanted to run away. I wanted to hide and not deal with it. To pretend it wasn't happening. Slowly but surely, I started making up excuses and reasons to go hang out with my grandparents across the street from my dad's place. It started being about how funny my grandpa was while watching baseball. He loved the Cubs and man, he also liked to yell and always thought he was right. Since my dad didn't have cable and couldn't get WGN, I would get to his house and take off for my grandparents. I loved getting away and not having to think about my parents or what was happening to my family. Funny enough, along the way, I fell in love with baseball. And yes, the Cubs! That bond and escape baseball provided for me at that dark, difficult time, has stayed with me. Although my love has certainly expanded to include other sports, it is strong within me today.

Over the 33 years of my life sports have always played a huge role. I was a nominal athlete myself, but fandom has always come with great joy to me. I was always the one in my family or the one girl in my group of friends who could name every team in all three big sports. The one who knew most every player, position, rule and certainly the lastest stories as reported by ESPN. I've always enjoyed it but on top of it being fun for me, it was also an escape for me. Always. Anytime there was something stressful or difficult or heartbreaking or sad I would choose to turn on a game or Sportscenter or whatever ESPN was showing at the time. I could get caught up in the stories and people of any game. I still can. This has ALWAYS worked to relieve some stress and distract me and kinda relax my head a little.

I had an appointment with my pulmonologist today. This is what the whole appointment came down to, "You've taken chemotherapy. You've tried for a stem cell transplant and you've tried for a lung transplant. There is nothing else you can do. You are not going to get better. As a matter of fact, you're going to keep getting worse. I don't want to ruin your day but you need to start making decisions about end of life care. Will you sign a DNR, etc?" I have to tell you the truth, I appreciate his honesty. As soon as I got home first thing I did was turn on ESPN. I couldn't be distracted but tried again with a basketball game. No luck. Seems my trusty old friend isn't coming through in this case. Then again, what is worse? For me, as a 33 year old single woman with no children, the worse thing I can face is my own death, right? Wrong, it's not the death part that scares me. It's this period of time coming now. This time where emotions and fears will overwhelm me. My physical mobility will slowly fade away and I will become stationary. It's not a matter of yearssssss anymore. I don't know how long. No one does. I just know I turned that corner where making clear minded decisions about my future healthcare and after death care is necessary.
I wish some sportscenter would answer these questions, or at least make me feel like I have some hope somewhere else. Or maybe just help me escape long enough to forget I'm not just a normal girl. Those are the best times; when I don't even remember I'm sick. For now I just live. The best I can.

Twitter? Yes, Twitter.

I'm not the best writer and that's gonna be evident by this blog. The thing is, I love Twitter. I'm kind of an addict. I happen to think everyone should be on Twitter, whether you actually Tweet or just follow others. So let me help you get started or give you a few extra people to add to your follow list. Trust me, I know something about needing to be entertained. I've got alotta time to fill.


5. Sarah Colonna @sarahcolonna
I can't describe how funny I think this woman is. She is my favorite female comedian and I got to see her live stand up earlier this year. She often tweets sarcastic, irreverent jokes and rips on her castmates. She makes fun of herself including her dating life and where she's from. I never skip over her tweets and honestly, that's saying a lot. I can only say that about a fraction of the people I follow. Sarah's a roundtable regular and writer for Chelsea Lately and After Lately. She recently wrote a book called "Life as I Blow It" and also has a sitcom that just got picked up by the same name. Sarah's just plain funny and somehow she makes me feel like we could sit down for a drink and chat and be friends. Maybe that's just wishful thinking.

Nah, she'd like me for sure.


4. Lil "C" @kingofkrump
Look guys, there's something about me you don't know. Or I don't know, maybe you do. I confess, I LOVE hip/hop. The culture, the music, the dancing, all of it. I get it. It makes no sense. I grew up in Southern Indiana in a town of 8,000. The definition of midwestern small town. I can't help it, I've fallen in love with it in my adult life. So, who is Lil C? He's just the man responsible for an entire genre of dance called krumping, that's all. I don't want to cross any lines and explain krumping as hip/hop dancing. It's not. If you wanna understand it better, I highly recommend you look up the documentary called Rize. It's inspiring and shed light on a way of life I didn't know a lot about. I realize my limitations in understanding something that came from a world I've only read about. I just know that Lil C is an innovator, a creator and he's inspiring to watch and listen to. He dances, he raps, he choreographs, I don't know, he probably makes magic too. I follow him on Twitter to get access to his most recent work in music and dance. He's also got a way with words and is often poetic and thoughtful in his posts. He purposely misspells words and makes up his own. Maybe I have a little crush, but that doesn't mean I'm not objective.

He's def ##Bucc!!!


3. Jeff C @ajeffclawson
So, Jeff's not "famous" and you may not have ever heard of him, although I wouldn't be surprised if you did someday. Jeff's a teacher in the Indianapolis area and he's actually a friend of a friend. I know him from his work at local improv company, ComedySportz and as a member of long form sketch group, Three Dollar Bill. I only marignally know him but I gotta tell you, to me, he's one of those people whom you meet and you like instantly. And man, is he funny. I have so much fun watching him on stage and his physical comedy makes me laugh more than anyone else I've seen. Obviously, when I found he was on Twitter it was a no-brainer to follow. I haven't been disappointed. He uses really intelligent, sharp humor. I love that he has an ongoing commentary on different subjects using hashtags like #MyDumbassSuburbanProblems, #ILoveMyWife, and #BewareDaHorsies. If you choose to follow Jeff and you don't at least chuckle to yourself once a day, then I don't know what's wrong with you.

(No pressure, Jeff.)


2.My number two has been deleted because I changed my mind. Just follow me on Twitter if you wanna. @bethfortwendel


1. Stuart Scott @stuartscott
STUART SCOTT IS ONE OF MY FAVORITE PEOPLE I'VE NEVER MET! I'm serious when I tell you that following Stuart on Twitter has changed my life a little. Lemme explain. First of all, if you don't know who Stuart is, you need to watch ESPN like normal people. Seriously, I started following him because I LOVE sports. All my life I've been the girl who would choose ESPN or some baseball or football game over sitcoms and soap operas. I don't know what I'd do without ESPN and Stuart has always been my favorite Sportscenter anchor. These days, watching sports is a kind of escape for me. There's competition, heartfelt stories and hope. I love it and I get wrapped up so easily. Scleroderma has landed me on the couch more so than I appreciate and televised sports and sports news is a Godsend. So, thanks to ESPN for that. And Stuart entertains me. He's funny and uses clever, cool catch phrases. I wanna be cool like Stuart.

Second of all, Stuart is an awesome father/person. He uses Twitter often to tell stories about time with his children and the joys of parenthood. He shares his love for his kids and his hopes and dreams for them. He constantly praises them to all of us complete strangers and celebrates their unique qualities. I'm so impressed by this because I see parenting as THE most important job any one of us could have. I don't have children, but if I did I would want to have children with someone who views parenthood like he does. It's refreshing.

Third of all, Stuart has inspired me. He has cancer. At the time I'm writing this, I don't know what his current status is, but I know that for months I have read post after post of positive words and an attitude that I wish I could manufacture for myself. He has shared his journey through chemotherapy and tests with honest feelings about fears and triumphs. Each Tweet, each day that I read that has showcased his ability to look at life as a joy and something to be lived and not survived, has encouraged me. As a result, I felt strength build in me as well. Seems strange that someone I don't know and who only communicates through tidbits of his life in 140 characters at a time could affect me that much. But he has. Even after I've lived through the disappointment of being rejected for a life-saving stem cell transplant, I decided to push through all of it again in hopes of getting a lung transplant. All the paperwork, the tests, the poking, the proding, the hopes, the fears, the pain, all of it. I'm willing to do it all again based solely on the hope that I will breathe normally again. It's not likely Stuart will ever read this but I'm gonna say this anyway:

Thank you. For being honest and open and for sharing your struggle and your journey. Your story reached me and moved me.
Stay strong,
Beth

My lungs made me do it.

It's time for another update. I'd love to say that things are looking up. Ya know, it's positive and good things are on the horizon. Truth is, things are unclear, heavy and have been coming to me bearing my good old friend anxiety. There have been some wonderfully good things recently too though! I took a couple trips this summer and got to check off many items on my bucket list. In many ways it has been a very happy, fulfilling summer. I sat in the Chicago Cubs dugout, tried new, exotic and ethnic foods, added another stamp to my passport and even enjoyed my first experience on urban/metro transportation. I've seen some dreams of mine come true and I'm excited and grateful for each one. Happy, thankful tears have followed each new experience and my life and relationships are richer and fuller having shared them.

What in the world could overshadow such blessings? Unfortunately, I've found that interstitial lung disease can. No matter how hard I have fought to push the thoughts and the ideas out of my mind, the reality of what is happening to me and what I'm facing, it seems they always linger. Like a big ugly wart on an otherwise lovely hand. It's always there and there is no escape. Literally every step of every day is affected by my inablility to breathe well.

It's funny because I have, at different times in my life, found myself inspired by people in desperate or bleak circumstances. Those people who always seem to be positive and have this message for the world that no matter your struggle, life is good. I find myself wishing I could manufacture that attitude or outlook. I'd love to be the kind of person who could be 32 years old, dying and still telling everyone how wonderful things are. But I just can't do that. There is nothing extraordinary about me. I'm just a regular person who has scleroderma and whose lungs are slowly becoming rocks (almost literally). So I need others to understand that yes, wonderful blessings still come in my life. And yes, I am indeed thankful for them. But more than that, I feel like life is just hard. For real. THIS. SHIT. IS HARD.
Frankly, I have become such a complainer and so intolerant of things that I feel are stupid or a waste of good time and energy. I'm not good at faking any of it. I try but that seems to take energy I don't care to spend. On the flip side, I definitely think kindness is important and I do make efforts to be kind but man, the trivial things just get to me.

In about a week I'll start a process of pre-qualifying for a double lung transplant. (I can't believe I actually just wrote that sentence.) It's crazy I'm here. Already. There's a lot riding on these first few tests. Actually, my life is riding on these first few tests. Basically they need to know if my esophagus is working well enough not to destroy new lungs were I to get a transplant. The long and the short of it is that if my esophagus isn't functioning properly, I'm immediately eliminated from the possibility of a transplant. If it seems to be working ok, then I can continue on with more testing and searching for a hospital with a program that will accept me. And yes, we are this point. My lung function numbers have steadily decreased since my diagnosis and so much so over the past year that my oxygen use has doubled and my oxygen saturation has dropped, at times into the 60s without supplemental oxygen. (If you're not sure what that means, a quick google search will clear it up.)

So all this to say, sorry if I've been a jerkface to you at any point but the truth is, I don't appreciate this whole situation much and it's not really bringing me a lot of warm fuzzies. I'm doing the best I can with what I have but I admit a lot of times the best I can is just a lot of crabbiness. Maybe some epiphany will come that changes my attitude and brings some acceptance and understanding but for now, know that in my heart I'm not really a jerk I'm just a little pissed off at life. So, uh sorry I guess.

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.