Friday, April 27, 2012

I need help climbing onto this soapbox...

I don't care if you're a Democrat, Republican, or Flying Purple People Eater. It doesn't matter if you voted for Obama, or if you will vote for him again. Say what you want about our healthcare system- you are entitled to your opionon, and most of what you say, I probably agree with. However, if you are against Obamacare or healthcare reform, I'd really, really like to hear your reasoning, because if it weren't for Obamacare, I'd probably be dead.

When I was deathly ill, hacking up what looked like bloody pudding and bleeding from every orifice, Uncle Sam pulled the rug out from under me, washed its hands, and left me to die. I had to resort to selling everything and living out of my car, while working, despite being in no condition to do so. I was denied food stamps and welfare. I was denied insurance. Because my illness is so rare, and since most people simply drop dead from it rather than live with it, it is not a recognized disability, so I was denied that, as well. Only by literally selling my body to science could I afford my treatment.

Then, Obamacare came in and saved the day, just in the knick of time, helping pay for the two surgeries I needed within six months time. It paid for 90% of my care and saved my life. But, I guess you're right, the $20,000+ my family and I have paid out of pocket isn't much less than the $750,000+ my care has cost in just two years. I could've just split the difference by working some overtime, while I had swelling in my brain, failing kidneys, fluid-filled lungs, a paralyzed foot, etcetera, right? Sure, no sweat!

What if I was your child, and you had to put a second mortgage on your home to pay my medical bills? Would you support Obamacare then?

What if you were me, and you had to decide whether to eat this week or to buy your medicine. Would you want healthcare reform then?

What is it going to take? How many people have to die before we change our healthcare system?

How many more stories like mine, and like these, will it take?

Sometimes, I'm so overwhelmed, I joke that paying the doctors to keep me alive is going to be what kills me.

I am the 99%

...Okay, can somebody help me climb down, now?

Sunday, April 22, 2012

Go with the flow

I was just telling someone I haven't had a nose bleed in awhile. This is what I get. Jinx!

Friday, April 20, 2012

Crutch THIS

Back in December 2010, I was instructed to walk with cane, and thus, Scraper Cane was born!

Then there was the Scraper Cane: Holiday Edition

Which later gave way to the 4th of July Edition (which apparently I forgot to blog about. Fail!)

Then there was the Pirate Edition (we'll, come back to this one in a minute- I'm blogging about it now, at least.)

Then there was the Halloween Edition (I failed to blog this one, too?! *sigh*)

Fast forward from Halloween to ye ole wheelchair in December/January.

Then came the crutches...

And then stayed the crutches...

Here's a reminder of my recovery goals:

What I was told I'd do:
- 2 weeks of bedrest
- Then, 2 weeks of limited activity
- Then, 2 weeks of moderate activity + physical therapy
- At 6-8 weeks post-op, begin bearing weight
- At 3-4 months, ditch crutches for cane
- At 4-6 months, ditch cane
- At 6-12 months, regain normal activity: walking, running, climbing

What I said I'd do:
- 2 weeks bedrest
- Then, 2 weeks limited activity + physical therapy
- Then, 2 weeks moderate activity + bearing weight
- At 6-8 weeks, ditch crutches for cane
- At 3-4 months, ditch cane + walk
- At 6 months, climb
- At 6-12 months, run

And what has actually happened:
- 1 week bedrest
- Then, 1 week limited activity
- Then, 1 week moderate activity + physical therapy + bearing weight
I was off to SUCH a great start!
- At 2.5 months, ditched one crutch
And then things slowed down...
- At 3 months, began turning crutch around and using as a cane
And stayed slooowww...
- At 4 months, traded ankle brace for foot support
- At 5 months (exactly 20 weeks, to the day) traded crutch for cane

...And now we've cycled back around to the Pirate Cane!

I thought I'd be ditching the cane by now, and instead, I'm just now getting to it. This has been a huge lesson in humility and patience for me, two of my greatest challenges. It has also been an indicator of mind over matter and matter not always being controlled by mind.

Sometimes, no matter how hard you want something, how much you will it to be, it doesn't always happen the way you want it. And that's okay.

That being said, I'm working so hard, and I'd really like to be rid of this cane in 8 weeks.

My nerve damage has not improved and it's likely it never will. That means it takes double, triple, sometimes quadruple the effort to use certain muscles and to move in certain ways. It means some of my muscles don't work the way they are supposed to, and that, sometimes, other muscles have to double their workload to make up for the dead weight. It does not mean that I won't be able to do the things I want. It just means I have to find new ways of doing some of them. And luckily, I love a challenge.

Thursday, April 19, 2012

Planned pierogies, produced pot pies

Alright folks, I was recently back in the kitchen concocting new Bren-friendly recipes, so I have a new recipe for you.

My favorite food is pierogie, which is a Polish ravioli with potato and cheese inside. They are typically fried and served with sour cream (not a fan) or applesauce(yes!). My Mama always used to make them on my birthday, and since I was home close to my birthday this year we decided to try to make a modified version.

Stuff we used:
(these are estimates, as we didn't use any measuring instruments)
-Cup or two of rice flour
-A large egg
-Oil (we used olive and safflower)
-A sweet potato
-Vegetable shortening (that's fancy talk for Crisco, y'all)
-Cold water
-Wax paper
-Rolling pin
-Toaster oven (regular ovens are acceptable)

First, make a mountain with your flour (yes, I play with my food; and my Mama encourages it!) and make a hole in the middle. Crack that egg right inside that volcano you crafted, and pour a bit of olive oil in there for lava. Grab your fork and scramble up that egg yolk. (We also tried using Crisco instead of egg + oil, you'll find out how well that worked for us...)

Get in there and man handle it, kneading it all together. Add little bits of water as needed, while you knead.

Once it is well integrated, place the dough betwixt some wax paper. Roll it out.

Heat up a sweet potato (oven, toaster oven, microwave, the hot Texas sun- whichever you prefer) and mash it with some butter.

Remove the top layer of wax paper (you may need to slowly pry with a knife) and cut rectangles in the dough. Dole out your sweet potato. Fold over the dough and press the sides with your fork to seal the pouches. (Gently, lest you tear your dough!) Remove the finished product from the bottom wax paper with a spatula.

Heat some oil in your skillet and place the pouches in. (Again, be gentle- we lost a few from the wax paper to the pan).

As you can see, top right, the egg + oil version fried well. You can also see, bottom left, how the Crisco did not. Burned Crisco smells like something out of Anchorman! We decided to bake those pouches instead, as you see bottom right. (They fell apart when we tried to seal them so Mama said "forget it."

Here are the finished fried pouches. I'm sure you can surmise which is which.

The oil + egg, fried version worked well, but we should have rolled the dough thinner. (I couldn't break one of them open with my hands)

These fell apart in our hands and had the consistency of grits.

My Facebook status, post recipe attempt: "Attempted to make a favorite recipe Bren-friendly tonight, may have instead invented an impenetrable building material capable of space travel, and a version of edible play sand."

So not so much a pierogie, as a sweet potato pot pie, but with some applesauce on top, these were actually pretty good!

We give Scruffy a taste...

Saturday, April 14, 2012


Bren-friendly pancakes courtesy of my Mama.

You can find the recipe here.

Sunday, April 8, 2012

Texas Easter

My niece eyeing the ham. I know how you feel kid

Forbidden "fruit"

Cole slaw, cheesy rice casserole, ham, deviled eggs, fruit salad, carrot cake

Bren-friendly feast

Buffalo, green beans, sweet potato, red potatoes, un-deviled egg, applesauce

My Easter Peeps

Wednesday, April 4, 2012

Goodnight One Tree Hill

"Somebody told me that this is the place where everything's better and everything's safe." -Toad The Wet Sprocket

Tonight was the series finale of One Tree Hill. I've never been so affected by a show before, and probably won't be again. It has truly changed my life.

OTH came on the air when I was 18 years old. I remember watching the very first episode in my college dorm room my freshman year. I followed it through my college years, and grew along side the characters. There was something different about OTH. It wasn't just about entertaining its audience, which it did. It was about identifying with its audience, it was about connecting with them, it was about changing them for the better.

Although, in concept, OTH was about basketball and the rivalry between two brothers, it was so much more than that. At its heart, OTH was about art and music and literature, some of my very favorite things. It introduced me to new bands, it told me that my art and my voice matter, it recommended books for me to read. It also gave me some of my favorite quotes (I'm a quote-whore). It inspired me, it gave me hope, it made me grow.

"I think music can be the thing to change the world." -Peyton Sawyer

OTH was also about connections. Connections between the characters, connections with the audience, connections among the fans. At our roots, humans are just looking for connections, to be a part of something, to feel less alone. We found that in Tree Hill, and The Tree Hill family is something extraordinary and unparalleled. Through OTH I was able to connect with Hilarie Burton's company, Southern Gothic Productions, which has led to new friendships and expressive outlets. Through interacting with Sophia Bush and Austin Nickels and other fans, I learned of Crowdrise and Global Green USA, and have been able to help raise money and awareness for the 2010 Gulf Spill and other charities.

OTH explored revolutionary concepts and storylines that other shows wouldn't touch. In one of the most talked about and applauded episodes, a tortured student takes a gun to school and takes his own life. Moments later, the hero of the story is killed by his own brother. Real life experiences, that weren't glamorized or glossed over. The emotions were real and we identified; because in real life, our heroes don't always survive. Someone I know was shot to death when we were in high school, so it was very real for me, and I know for others, too. Unfortunately, these things happen, but it wasn't something often talked about, especially on teenage-focused dramas. OTH was honest and vulnerable, and that is what made it strong.

“There's a day when you realize you're not just a survivor... you're a warrior.” -Brooke Davis

After the high school years, OTH jumped ahead, skipping the college years, and landing the characters at the same age and jumping off stage as I was at the time. As they struggled to find their footing as young adults and start their lives, I was also finding my footing and starting a new life in California. So much of the show paralleled my own life, and the wisdom and insight I gained from it has helped shape who I am.

Then in Season 7, I don't remember if I forgot; or if I was too drunk to care; or if I thought the show had ended after Season 6 like it had been reported it might; or it was about my favorite character Peyton leaving; or what; but, I lost the show. I lost myself. I nearly lost my life. It was a time when I stumbled and fell. (OTH had some trouble finding its footing that year, too) I was emotionally, physically, and spiritually ill. I was hopeless. Then I got sober. Cheers! And then I got Aspergillosis. Jeers!

"The rest of your life is being shaped right now. With the dreams you chase….The choices you make….and the person you decide to be" -Haley James Scott

Those were hard days. Days sometimes I'm not sure how I managed to make it through. Somewhere along the way I remembered a song by one of the cast members, Kate Voegele. On those hard days, those kick you in the teeth days, when I didn't think I could go on, this song got me through, time and time, again.

“Sometimes surviving is about all the living I can handle.” -Peyton Sawyer

Then, I remembered my favorite show. I remembered how OTH had given me hope. I ordered the first six seasons on dvd. There were times when I was too sick to move (like this time, of many, that I had a bad ear infection) and watching the show got me through. After a few months of watching the dvds I wondered what the cast were up to and did some research. They were still taping OTH! It was like finding a long lost love! I started recording the new shows and the season I'd missed, at work, and watching them on breaks; while also re-watching my dvds at home. I even found old reruns on Soap Net! At one point I was watching Season 6 at home, and 7 and 8 at work, simultaneously. I don't know how I kept everything straight.

"Each morning you choose to move forward or simply give up." -Lucas Scott

This season I had a hard time with the show. It was different than I remembered. The quiet strength it once had was almost nonexistent. My favorite character didn't so much as call. I was upset that just when I'd found it again, I was losing it.

Then, I saw glimpses of what OTH used to be, and in the finale tonight, saw it for everything it was, is, and will always be. I forgave Peyton for leaving and never coming back, and I forgave the show for ending, just as I've forgiven and let go of loved ones I no longer have in my life. "People always leave," but that shouldn't be reason not to embrace them while they're here; to not love them; or to keep ourselves from being influenced by them.

In that same vein, sometimes, I have a hard time with my life. It is different than I remember. It isn't always what I want it to be. I've lost things I wanted to hold on to. But, damn it all, it's effing beautiful. All the things I love are still there, if I look hard enough. All the things I love about OTH were still there, will continue to be there, even though there will be no new episodes. And all the things I love about my life, or have loved and are now gone, will always be there.

"Life is funny sometimes. It can push pretty hard but if you look close enough, you can find hope in the words of children, in the bars of the song and in the eyes of someone you love." -Nathan Scott

When OTH began, they said it would never make it. It's ratings were low, and it was unlike other shows. Yet, it survived. It tried new things like fast forwarding time, twice, when other shows hadn't dared, and survived. It delved into issues other shows wouldn't touch, and survived. It reinvented itself multiple times, and survived. There were several times it was faced with cancellation, yet it survived. And all along it stayed inspiring and honest. It's been called "The Little Show That Could." The deck was stacked against it from the beginning, and a lot of the time it was uncertain if the show would be around the next week, yet it pulled through, over and over. I know a thing or two about that.

So, Goodnight One Tree Hill. Thank you for your inspiration, wisdom, and hope. Thank you (and All My Children) for getting me through some rough nights and some hard days. It sucks that both shows are now cancelled. Thank you for the laughter, and tears, and music, and art, and literature, and connections. Thank you for keeping your integrity and honesty. Thanks you for helping me through. Thank you for shaping who I am.

"I don't wanna be anything other than what I've been trying to be lately." -Gavin Degraw

Compliments of the chef

Mama's pasta sauce

Here's another recipe that my Mama came up with when I was visiting Texas in December.

-Heat some olive oil in a pan
-Add 1-2 tbs minced garlic
-Pinches of salt and pepper
-Chop up an onion, a tomato and a yellow pepper, throw them in
-Saute and simmer
-Dash in some Oregano

Optional additions: zucchini and/or butter

Pour over spaghetti squash, chicken, or rice noodles

Ohhh yeah, that's good stuff.

I will be in Texas next week and Mama and I are planning some new recipes- stay tuned!

Tuesday, April 3, 2012


Ok, I've had my meltdown, I've wallowed in self-pity for a few days, I've laughed over this; and now I'm ready to dust myself off and keep going. Focusing on my burdens can swallow me whole, if I allow it to. I'd much rather live by counting my blessings. When I do so, I am a much happier, more useful person.

Thank you to everyone who commented, emailed, messaged, texted, tweeted, called, smoke signaled, etc. me this weekend. Each one of you is a rosebud and I'm thankful to be surrounded by a garden of love. "I get by with a little help from my friends..."

Good things that came of this:

-Welp, now I know: I tried, I took a chance, and now I don't have to be left wondering "what if" I had done that trial; "what if" that could have been "it;" man, I wish I'd taken that risk; etc. I would rather try and fail than never try, because of the chance of failure. If we went through life with that mentality, there would never be any successes. You win some, you lose some. You keep going.

-$$$: I hate to say I was bought, but I'm not going to lie, I chose that trial because it paid well, and I desperately needed the money. Everyone has a price, and while I'm still debating whether or not my kidney function was worth the amount I received, I am glad to have some relief from the crushing weight of my medical debt. It is expensive to be alive! It was worth unloading some of that burden.

-I'm doing okay: While I am just now finding out the root causes of some of what I've been through lately, I've already been through most of it. I'm coming out on the other side, now. I'm not currently in kidney failure because things are under control at the moment, and I'm managing my medicine, diet, and blood. My foot is almost to where it was strength-wise before my surgery. With the added bonus of not being crunched up and floppy, at the same time. Seriously, that was beyond gross

-I know who to count on: The last couple of years have been a great spotlight on the people in my life, and each time my ship goes down it shows me who will be there to throw me a life jacket, and who will jump ship. I know who my real friends are. Thank you

-I'm alive!: I am still here. And if that's not a big ole yellow Texas rose...well, then this analogy sucks.

"With all its sham, drudgery, and broken dreams, it is still a beautiful world." -Desiderata

Sunday, April 1, 2012

When it's rough, break stuff

How I coped on Friday.

Be warned the lyrics are explicit...but, given my position, they were appropriate.