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.