Can I tell you a secret?

As much as I pout and cry about scleroderma, it might just be the best thing that's ever happened to me.

I just planned a trip to Disneyworld with my dad and brother on a complete whim. I dreamily mentioned to my dad last week that I wanted to go to Disneyworld, and he asked, "When?" And it just took off from there. We're going on December 8.

I'm applying to work in California this summer, where I'll be on my own halfway across the country from my parents for the first time, and I won't be able to drive home when I need their help, but I'm not scared. I'm excited.

When I went to visit Chelsey in College Station, she asked me to go skydiving with her and I hardly had to think about it. We didn't end up skydiving, but we will in the near future!! But the point is that skydiving used to be on my list of "absolutely not"s, but I don't think of limitations the same way anymore. Instead of daydreaming about doing something epic that I've always wanted to do, I make serious plans to do them now.

It all started when I did my homework on scleroderma. The mortality rate is high, and I don't know what's going to happen. I figure if I have no control over when I'm going to die, I'm going to control how I'm going to live.

And although my body is in the worst state it's even been, I'm the happiest I've ever been. I'm not afraid to live my life anymore, and I think that's the best gift God has ever given me.

Summer 2009 wrap-up

Wow I haven't written in forever. I guess I'm just too busy living my life, and loving it!! But the whole reason I started this blog was to document my journey, so neglecting to write probably wasn't a good idea. Oh well, here goes.

When my blog left off, I believe I was anticipating the ever-uncertain medical trip to Ida Grove, IA. On May 31st, my mom and I flew to Omaha, NE where we rented a car (a very sucky rental car, but whatever) and drove the two hours from there to the tiny, provincial town of Ida Grove, IA (which has one single stoplight, by the way -- cutest place ever). The drive was so scenic and beautiful, the likes of which I've only seen on TV. I loved it, cow pastures and green farms from end to end of the horizon.

We finally arrived in Ida Grove and checked into the Delux Motel, the place where apparently all of the patients check into when they come to see Dr. Sinnott. At the check-in desk, I met a fellow patient who had been living with rheumatoid arthritis, another supposedly incurable auto-immune disorder, before she learned about Dr. Sinnott and his antibiotic protocol. This was her second visit to Ida Grove for IV's, and she says her rheumatoid arthritis is practically unnoticeable anymore. I was basically in tears by the time I got my room key. 

We met with Dr. Sinnott the next morning in the Ida Grove hospital and he ran some blood tests and such, then told me the story of how he came to use the antibiotic protocol to treat scleroderma, rheumatoid arthritis, and fibro myalgia. In short, he witnessed Dr. Brown (the founder of the antibiotic protocol) use it on several patients thirty years ago and saw that it truly worked, with no harsh side effects. So it's safe, and it's effective. The only problem is that it's not the textbook way of treating these diseases, and so other doctors are terrified of trying it. As far as I know from my internet research, Dr. Sinnott is one of only two doctors in the country practicing this treatment, the only treatment that actually works, and both of these doctors are already semi-retired. Where are people going to turn when they're gone and their last hope of treatment is gone with them? That's such a scary thought. 

The hospital where it all began

I began my treatments of two IV's a day for five days. The amazingly sweet nurses decided to give me an IV lock, which is an IV needle attached to a flexible plastic catheter, the latter of which would stay in my arm for the entire treatment process so that they wouldn't have to poke me every time. Well, since my veins are puny, it took about four nurses, twenty minutes, and four jabs of the giant needle into my poor arm to locate my vein. After that, though, it was fine. That is, until my IV site got infected four days later and they had to poke me again, but that's beside the point. My mom then decided that she also wanted to get treated, so we were in it together!! The only bad thing was that it was really, really difficult to take a shower with one arm. 

Have you ever seen someone happier to be hooked up to an IV?

My mom getting the IV, too!

Between treatments, we didn't really fancy staying cooped up in the motel, and let's face it, Ida Grove has maybe three restaurants, two gas stations, and one stoplight. The Pizza Hut was really cool, though. It was positioned in the middle of a lake where you could eat out on the deck and feed swans. Everything about that place was so beautiful.

As I was saying, between treatments we usually ventured into the surrounding cities, most of which were just as tiny and un-amusing. The closest major city was Sioux City, and we were there almost every day for the amazing shopping and dining. It felt like I was on vacation, and it was great bonding time with my mom. For once, it was fun to not know where the road was taking us and just take time to soak it all in. The unfamiliar sights and smells, just happy to be alive. Being a tourist was exhilarating. 

Since then, I've been taking two pills a day. I can't remember what it's called off the top of my head and the prescription bottle is in my purse somewhere, but so far my friend Joe says the improvement he's seen in me is astounding. I, myself, have noticed that I'm more energetic and altogether happier, but my joints haven't improved much. They don't hurt, which is a good sign, but my overall mobility hasn't improved yet. I'm not losing hope though, because I came across a forum of people who have been treated with the antibiotic protocol, and most of them didn't see any improvements until seven or eight months after the first treatment, but after that have improved significantly. If anything, I'm extremely hopeful and feel extremely blessed to have found Dr. Sinnott and his amazing nursing staff at Ida Grove.

This summer has been indescribable, even though it was unlike any other summer I've had. Usually, I spend my summers in California, and although I regret not being able to visit this year, I don't regret anything I accomplished this summer. A major step was taken toward my remission, and I've re-connected with my closest friends from high school, re-entering their lives and bridging the gap between us that was formed through our separation in college. I even got the chance to meet up my longtime best friend Chelsey in College Station. We spent two days catching up and almost, almost went skydiving, but the sudden bad weather forced us to reschedule jumping out of a plane for next time. That's okay. It just means that there will be a next time!

I'm getting ready to start my sophomore year at Sam Houston State University as a new Journalism major, and I couldn't be more ecstatic. I just moved into my new apartment right off campus with two roommates I couldn't be happier with, and I love it. More on that next time. 

Thanks so much for reading.

Not me.

This post is going to be slightly emo, but I'll do you a favor by starting off on a happy note. There are less than two weeks left of school before finals week, in which I have ONE FINAL by the way, so life is good in that area. Summer is almost here, and all I want to do is use the time to rest. Because I'm exhausted.

My mood has been a freaking roller coaster these past couple of weeks. I mean, I have my days, but I thought I had accepted it and was determined to just enjoy life and be happy with what I have right now. But... there's always "but". But I've just been a little stressed out, and in the midst of all that stress came the wave of self-pity and loathing. It just happens sometimes, and I don't like it. It's these specific low periods that I honestly just want to lay down my load, close my eyes and just leave it. And I hate myself for it. For actually allowing myself to believe that dying would be the easy way out. That's just how I feel right now, because I'm just so tired of fighting this fight. 

It's impossible to describe in words what this is doing to me, but I wish so much that I could explain. Because I need so badly to get it off my shoulders, for someone to be able to understand, for someone to relate. I just want someone to know what the hell I'm going through so that I won't be alone in this battle anymore. I hate this feeling of being trapped in my own body, of refusing to believe that this battered body belongs to me. That I was chosen to bear the burden of this defective product. I need God, but I feel so forsaken. What made Him think that I could handle this? I'm obviously not handling it. Sometimes, when I wake up in the morning, my hand will twitch out of reflex and such a simple action will send a jolt of pain down my entire arm, and it's just those tiny situations that serve as constant reminders of my misfortune. Misfortune? I don't know what to call it. Condemnation. Curse. Punishment for whatever horrible things I've done in the past. I find myself in bed twelve to fifteen hours every day, trying to sleep even when I'm not tired, just so I won't have to be in pain.

My friends have been really supportive and careful with me, which I appreciate so much. If I'm lucky, they'll slow down for me or even help me achieve daily tasks before I have the chance to embarrass myself by failing at simple tasks like opening a door or picking something up off the floor. Goodness, I feel so pathetic. But what I don't understand is when friends who know how fragile I am and how easily I hurt will be aggressive with me anyway. It makes me angry, at them for being insensitive and at myself for being so fragile in the first place. But it just makes me want to ask them if they hate me or if they're just sadistic to begin with. But I guess I can't blame them entirely, because they'll never be able to feel it for themselves. No one really understands why I can't do so many things, but it's enough that they nod their heads and try to help me out. 

I hate being this person. The person who can't.

Spring Break 2009

So for spring break, the usual five decided to go on a road trip to Lake Travis, our usual chosen destination for spring break road trips. Well, Ryan's mom recently rented a three-story condo with her new fiance and so we had somewhere nice to stay this time, instead of sleeping outside and getting raided by critters in the middle of the night. Yay. But wait, I'm getting ahead of myself. We couldn't leave Tomball until Friday night because Joe's spring break is the week after ours, and he had to fly back, while Ryan felt the need to spend his only real day home from spring break with his dad. So after we got everyone dispersed into three cars (Ryan, his younger sister and brother, and Joe rode in his car; Hillary and I rode in her car; & Tim and Ryan's brother Matt rode in Tim's truck), we hit the road... at 9 in the PM. 

Ryan was leading, with Hillary behind him and Tim behind us. With the weather and visibility bad enough because of the rain and, um, dark, it was pretty nerve-wracking trying to follow Ryan's pitch black car. About an hour into it, we're doing pretty well when Ryan doesn't see the Austin exit until the very last second and cuts across three lanes to get to it in time. Well, when Hillary tries to do the same, we realize that there's a white van in the lane we have to cross and end up violently cutting him off. And when we get to the exit lane, already sort of out-of-control due to the fast lane changes, Hillary's car completely hydroplanes on a giant puddle and we swerve around for a few life-changing seconds. Needless to say, a major freak-out ensued, especially when we looked behind us to see Tim's truck spun in the opposite direction. Tim called and said he was okay, he just needed to straighten out, and at the next gas station, we all got out to hug and celebrate our survival. God was with us.

We recovered and got back on the road. The next two hours weren't bad. Hillary and I jammed out to our old favorites and the Slumdog Millionaire soundtrack. We finally got to Ryan's mom's place, which was beautiful beyond belief, and sleeping arrangements were made and pictures were taken and Mario Kart was played. I just watched, because there were only four controllers anyway and I suck hardcore at Mario Kart. It was still fun togetherness, and we didn't go to sleep until around 3 AM. 

I slept through the night for the first time in months that night, and awoke to the smell of breakfast! Hillary and I went downstairs to eat, discover that all the boys were still asleep, and pretty much just wait for them to wake up so the day can start. We decide to spend the day on the town and leave to an outdoor outlet mall Ryan's mom had mentioned. (By the way, throughout this entire eventful day, I left my camera at the condo! GAH!) Anyway, when we get to the outlet, we realize that there's a Barnes & Nobles, the same Barnes & Nobles we had taken refuge at last spring break when it rained on us at camp! Funny stuff. We walked around, didn't buy anything, and since Joe really wanted to see "Taken" in theaters, we ate lunch and saw the movie (the second time for me and Hillary, but it was still awesome). After the movie, we went to Barnes & Nobles, where we didn't really read but rather sat in the Starbucks and talked. Oh, and we ran into Ryan's family there.

Then... the five of us decided to drive to downtown Austin, mainly to walk around 6th street. There were some super awesome little shops there. There was this hat store with super funky hats. We all picked our favorites and took a group picture. 

And there was this vintage music-themed shop with all this cool jewelry and artwork and there was this cat that looked just like my cat walking around the store!! I was sold. Then we visited the capital building, ate dinner at a bar, and drove back to the condo. At the condo, we played the Game of LIFE. I won. 

Before bed, we watched "The Pianist" (super depressing but super good). Then we went to bed, woke up, and had to depart. Sad day. Hillary, Joe, and I were all returning to Tomball while Ryan and Tim were to return to Waco later that day. The trip back wasn't bad. We missed the highway exit a couple of times because my GPS isn't updated and therefore confused, but we got breakfast at Sonic and it was smooth sailing from there. It was a great spring break. Oh! And I made my Montage #7: Spring Break 2009. Freaky thing is, my Montage #6 was done exactly one year ago, during spring break, at Lake Travis, with the same people (except for Nick and Austin). Everyone looks so different! Well, here's the latest montage. Enjoy.

Destination: Shawnee, OK

I think it's safe to say that this weekend was wonderful. Tim and I had been planning a road trip up to Oklahoma Baptist University to see our Joseph for several weeks now, and it finally happened, and it was phenomenal. 

My dad picked me up from SHSU at 12:30p.m. and we drove the 2 and a half hours to Baylor. Tim introduced me to his friends there, and Ryan came to say hi and see us off. Then Tim took his 5-hour energy shot and we were on our way. He experienced a couple of funky chemical reactions due to the crazy energy shot, but it worked for the most part. We listened to pretty much every CD in his CD wallet, and reminisced on all of the awesome times we've had together as a group, basically coming to the conclusion that our group of five was the coolest group of best friends known to mankind. Can't fight the love. When it got dark, we stopped at a Taco Bell to eat, and kept on remembering all of our fun times, which we never seemed to run out of now that I think about it. Back on the road, we finally entered Oklahoma and Tim tried to stay behind a certain truck that seemed really good at weaving in and out of traffic, but I think he noticed us tailing him and he succeeded in losing us. Shucks. Joe kept calling us for updates on where we were, while Tim and I noticed a lunar eclipse happening and almost saw it eclipse completely until the clouds got in our line of vision. When we finally reached OBU, Joe ran out into the street and attacked Tim's truck, then clambered in and directed us the rest of the way. It was all joyful screaming by then.

Joe led the way into his dorm building, where the lobby was packed full of his friends waiting to greet us. It was a nice welcome. After meeting everybody and checking out Joe's room, we all ventured outside looking for something do to. In a small town like Shawnee, "you have to make your own fun", as Joe puts it. After aimlessly wandering outside in the freezing cold, picking up friends here and there, we finally settled on getting out of the cold and playing Catch Phrase. One of the highlights of the trip was sitting on the couch in one of the lobbies with Joe and Tim on either side, just talking and laughing like we used to. It was so happy! At around 1 a.m., we went to IHOP and that's when I began to crash. The three of us shared the appetizer sampler, and I almost fell asleep on the table numerous times. Tim also found a new friend in Beth, the girl who relentlessly gave him foot massages on request. Poor thing.

After sleeping in and waking up just in time for lunch, Joe took us to Bricktown to see Slumdog Millionaire. Well, the movie was basically for him and his friends, since Tim and I had already seen it, but it was so good that heck, we'll see it again! I mainly wanted Joe and his girlfriend Savannah to see it because they just came back from a month-long trip to India, and I think that affected their view point on the movie quite a lot. Then Joe attempted to give us a tour of Shawnee but got lost in the process, and we retreated back to his room where Tim serenaded us on his guitar and I fell asleep for a good hour or so. Then dinner, and a basketball game. OBU won. The other team had these twin asians playing and Tim kept trying to insult them from the stands. That was funny.

The next morning, the three of us went to an early lunch at the Cracker Barrel, then said our goodbyes at a gas station. It was so depressing. We hugged for a good ten minutes before Tim finally pulled out and began heading home. The gas station was sold out of 5-hour energy shots, so he bought a Monster instead. When we stopped in Dallas to have an early dinner with Chelsey at Cheesecake factory, Tim was beginning to crash from the aftermath of the Monster energy drink. Seeing Chelsey was fun. We've been best friends since freshman year and it's almost hard to believe that our friendship has hardly changed after all this time away from each other. She took us to her apartment after dinner and we just relaxed for a while. Tim left eventually and Chelsey and I started watching "50 First Dates" until my dad came to truck me back to Huntsville. 

I love my friends. They make life amazing.

Handlebars

I just realized what a pouty little brat I am. All I do is sit on my lazy butt and whine about the things I can't do, the little extra difficulty involved in daily tasks, the annoying but bearable pain my body has to deal with. It was always "why me?" all the time.  

I just had the greatest day with my old high school family: Ryan, Hillary, and Tim (Joe's part of it, too, but he's in India at the moment). These four got me through the best and worse times of high school, and right now, they're seeing me through the hardest time of my life. We went to the Houston Zoo and saw and laughed at all the funny animals, took pictures, and I almost forgot about my scleroderma. Of course I could never forget it's there, but it hardly mattered as I was with people that I knew wouldn't judge me and who loved me before the scleroderma, and who love me now with the scleroderma. I'm no different in their eyes with or without the disease. After the zoo, we got stuck in traffic on the way home, so we listened to Enya and Josh Groban and the traffic flew by. 

We went to BJ's for dinner and Hillary gorged herself in the spinach artichoke dip and felt bad about it afterwards. Tim had a pazookie for the first time and we all fought over the ice cream and cookie because the four of us had to share one little tiny delicious pazookie. Hillary and I shared a giant stuffed baked potato and I don't remember what Ryan got but we were all a little jealous because it looked absolutely amazing. 

After that, we stopped by Redbox and rented Pineapple Express, which we didn't even get to watch because we got way too distracted playing Mario Kart and making music videos. We went to my room and made absolutely crazy music videos to "Hide and Seek" by Imogen Heap, "He Lives In You" from The Lion King, and "Don't Stop Till You Get Enough" by Michael Jackson, using props like a honey jar, a styrofoam noodle, and a pool table triangle. 

This was the last time the four of us would be together as a group until Spring Break as Tim and Ryan are going back to Baylor and me and Hillary return to SHSU, but that day absolutely made my Christmas Break. It was just a complete day spent with the people I love and trust and value like family. Then I realized just how lucky I am, no matter how often I like to think otherwise. Yes, I'm in a rough point in my life, but God has a plan. I may be in the sucky part of the plan right now, but He's not making me face it alone. I have these guys. I know without a doubt that He sent them to me to help me through this, and He knows what He's doing. They're keeping me alive. They're like my handlebars, keeping me balanced and focused and safe, as I ride through the obstacles God placed to make me stronger.

2009

Recover. Rehabilitate. 

These are my new year's resolutions.