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.