Doctors Suck...

I had a Gastroenterologist (GI) doctor recheck today. Obviously, I'm not happy with the outcome. I'm here to tell you AAAAALLLLL about it.

First of all, I'm no longer at Children's Hospital of Philadelphia (CHOP) and I no longer have my doctor there of 3 years, Dr. Kelsen, who suffers from Crohn's disease herself. I've never liked any of my doctors, of any kind, they're all a bunch of lying assholes who don't know what they're doing or what they're talking about, but Kelsen was one who I could tolerate and who I semi-trusted. But I'm 18 now and neither the hospital nor Kelsen wants to deal with me anymore. So, to be closer to my college we went with a doctor who works out of Lehigh Valley Medical Muhlenberg. His name is Dr. Taus, and right away I didn't like him. But, as I said, I just don't like doctors in general, so that's mostly why. However, today I've come to like him even less.

I had a few things in mind to talk to him about before going in to see him. They were: When should my next colonoscopy be? And, to talk about these weird symptoms I had the night of my last Remicade infusion. (For those who don't know, Remicade is an anti-inflammatory and immuno-suppressant drug that I take to control my Crohn's disease that has to be infused into my bloodstream via an IV at a hospital for at least 3 and a half hours every 8 weeks). Though it wasn't pre-planned, when we got there, my parents and I, we also started to talk about the negative treatment I've been receiving at the hospital by the nursing staff, he really didn't have a lot to comment on that though.

So, he walks in and starts asking the normal small-talk "how are things going? how's school?" to get the conversation going. We first talked about my lessening tolerance for certain foods, which my mom sprung on me out of nowhere, and I wasn't very concerned about that. Then I told him about the weird asthma like, heart skipping beats and horrible pains in both my calves the night of my last infusion and whether it could have been a reaction to the premed steroids or the Remicade. He said he'd never heard of either of those symptoms as side effects of either drug, but I told him I've specifically read about muscle pains and similar respiratory symptoms on Remicade's official website. He said all we can do is wait and see what happens next time. I was kind of expecting that and I was fine with that answer. It was the last issue that bugged me.

After the symptom conversation was over we asked when my next colonoscopy should be. He said he doesn't prescribe procedures like that unless the patient is experiencing unusual symptoms. I DON'T LIKE THAT ANSWER AT ALL. I told him why I was concerned about that, which is, back in 2009 I wasn't experiencing any symptoms, no unusual bowel movements, no pain, no blood, absolutely nothing and my inflammation markers from blood tests had come back fine. However, I'd been on 6MP, my previous pill form drug, for about a year and Kelsen decided she wanted a colonoscopy just to see what things were like. That was the fateful colonoscopy where I woke up to the sound of my mother's tears and was told that ulcers were forming in my colon. I told him all of that, but he wouldn't budge. What's worse is that I tried to express my worries more and my mom tried to make excuses for me and saying that I'm a high anxiety person. I don't deny the truth of that fact, but I don't think that it was appropriate to try and defend the doctor in this situation.

I've always maintained that my disease can attack me in silence, and that has been proven by the colonoscopy of 2009. I don't think that being concerned about not having a colonoscopy unless I'm having symptoms is an irrational fear that needs excuses to be made for it. I mean, compare it to cancer. It's always best to find the cancer cells at an early stage because it means it can be more easily treated, can be more easily defeated, more quickly defeated, and will lead to a higher chance of survival. What if I hadn't had that colonoscopy in 2009 when I did? What if we waited until I was having symptoms? When my doctor caught them, the ulcers were extremely small and easily healed and vanished by a few doses of my new Remicade drug. If I was having symptoms wouldn't that mean it would have been much harder to treat? I think so. The ulcers would have been more frequented throughout my colon, they would have been bigger, and I would be in a much worse state. And this is the policy that he implements. Well excuse me for being just a little more than a tad bit concerned.

He also said that since I haven't tolerated my past 3 drugs there's not a lot to do if there was a problem except increasing the dosage. I 99.9% sure that's a load of bullshit. I've been on a lot of Crohn's disease related websites and I've seen many different medications for the disease. I don't know the potency of all these drugs, and that's why I can't know for sure if he's right or wrong, but I know we could try to switch to Humira which is a similar drug, but self injected. On the Humira website under Crohn's disease it even says: "It is also used to treat adults who no longer respond to or can not tolerate infliximab" which is Remicade. And I know that a lot of people are on multiple medications to control their disease, though I wouldn't want to be on more than one drug, if it's an option and would help I would do it. As I said, doctors don't know what the hell they're talking about.

So, we have to do my next Remicade at this hospital but after that we've discussed a few options. I don't much like Taus and I REALLY don't like the nursing staff at the hospital. We can look at another hospital near my college, St. Luke's, but it's not a major hospital and is probably much of the same, but Taus works out of there too. We can go to the specialized hospital of The University of Pennsylvania in Philadelphia that CHOP is affiliated with, get a new doctor, and miss a day of college classes every other month, which should be easily workable. Or, we could go to a specialized hospital called Summit in North Jersey and maybe miss a class or not, it's only an hour away, and get a new doctor. We have a lot to think about and all this stuff like this bugs the hell out of me.

In conclusion, doctors suck and Crohn's sucks.

Always in My Life

The words keep ringing in my head
And I can’t put them down to bed
No matter how I try
They just keep coming to life
‘Cause you whip me in the eye
When you feed me all your lies

And no matter what I say or do
I’m gonna have to face the truth
I’ll always end up stuck with you
What am I supposed to do?

When the world is falling down
And I’m flying ‘cross the ground
You’re always on the chase
And there is no escape
From the pain and your beatings
And I can’t stop the bleeding
You’re such a waste of life
I just want you to die
But I guess it’s not your time

I’m always thinking to the past
And how I landed here so fast
And then I put all of the blame
On the day I first heard your name
And now everything has changed
No, nothing stays the same

Then I count the things you stole
From my heart, body, mind, and soul
And though I cannot break your hold
This I just want you to know…

When the world is coming down
And I’m flying ‘cross the ground
You’re always on the chase
And there is no escape
From the pain and your beatings
And I can’t stop the bleeding
You’re such a waste of life
I just want you to die
But I guess it’s not your time

I always did my best
And I soared above the rest
But then I got burned
It’s not what I deserved
Now there’s no going back
From your ruthless attacks
And there’s no one here to save me
From the scars that you gave me

I guess you’re always in my life
You’re always in my life
Always in my life
My life
My life
You’re always in my life

When the world is falling down
And I’m flying ‘cross the ground
You’re always on the chase
And there is no escape
From the pain and your beatings
And I can’t stop the bleeding
You’re such a waste of a life
I just want you to die
But I guess it’s not your time

So you’ll always be in my life


I wrote that song. Enjoy it, interpret it, there ya go. That's it. See ya!

Odd One

"Odd one you're never alone,
I'm here and I will reflect you,
Both of us basically unattached to anything or anyone unless we're pretending,
You live your life in your head,
Some call it imagination,
I'd rather focus instead on anything except,
What I'm feelin,
What I'm feelin,
Odd one...

Hey,
It's gonna be OK,
Hey,
We're gonna laugh at this one day,

Odd one I wish I was you,
You're never concerned with acceptance,
We are all desperately seeking out and fitting in with any one who will accept us,
But not you,
Odd one...

Hey,
It's gonna be OK,
Hey,
We're gonna laugh at this one day,

Hey,
It's gonna be OK,
Hey,
Gonna laugh at this one day,

Hey,
It's gonna be OK,
Hey,
We're gonna laugh at this one day,

Don't let someone tell you you're no-one,
Don't let someone tell you you're no-one,
Odd one..."
By Sick Puppies
Music Vid: http://www.youtube.com/watch?v=Wgbv3d-k7sA

Got a ton of music from 6 different artists I recently got into for Christmas. Sick Puppies is one of them and is at the top. This song has to be my favorite. Love it so much! Why?

I'm weird with how I analyze songs, actually. Well, besides the usual fact that they help me cope with my disease and I twist the lyrics to fit around that situation. It's hard to describe, really. It can be different for each song, too, and it often is. In this song I can have a couple of different outlooks or points of views or whatever you want to call its on the entire song:
In the first stanza I relate it to myself. Mainly, the 4th-9th lines of the stanza. Even though in the song the point of view changes in those 4 or so lines, but in my head it stays the same. I twist all those lines into an expression of myself. I've ALWAYS lived inside my head and when I was very young, and still even sometimes today, it WAS/IS my imagination. But, also today it's become something very different too, and not so nice. This is how I tie in the last 4 lines of the stanza into my life as well. It's not just imagination anymore, it's....well, I don't know what to call it, but it's much darker than imagination. I guess it'd be called coping in a way, but it's not really anything that effective. Just dwelling, and wondering, and fearing, and thinking, and feeling, and obsessing, etc. all about the worst thing that's ever happened to my life. I'd rather think about anything else, but I can't seem to find a way.
The first part of the first stanza is a little less defined for me. I guess it's just the desire or hope for someone to feel that way about me and for me to feel about them. To have a connection with someone that I've hardly ever had before. The hope for a life partner, not so deep. ;-)
The second stanza is where I change my point of view. Not where I'm being sung about but where I'm the one doing the singing. I feel exactly the way the speaker does in this part of the song. I know some people like the subject of this stanza and I totally want to be like them. I'm always self-conscious about myself and always worrying about what other people will think. Especially with my disease, but that has gotten a little better. I've always been like this and it's another thing I wish I could change about myself. No matter what I do or what I tell myself I can't shake the idiocy of self-consciousness and caring about what others think.
The chorus; short, sweet, simple, and to the point. I absolutely love it! That's definitely a hope thing for me. The lines kind of give me hope of what I should and can be able to do. That, eventually, I can learn to live with this is a more reasonable fashion and learn to live my life to the fullest. That one day it won't matter to me, that I'll be COMPLETELY ok with it instead of just accepting that it's here with me. I hardly ever feel a hope like that, but when I listen to songs like these I can feel like that for a brief moment in time at least.
And the final lines. Just like the chorus I love how short and simple yet deep the words are. I think it's a very positive and useful message to anyone in the world, and it does a lot for me too. As I said before I care a lot about what people think and lyrics like these final ones in this song help persuade me to be different. Yeah, I haven't changed yet, but when I'm listening to the song it makes me want to be and makes me believe I can be. And I always try and sometimes it works. Sometimes it doesn't but the power and the hope the song gives me and the act of trying is all that I think really matters.

Well, this is the first of many song analyses I am going to be doing on this blog from now on. I hope you all enjoy.

Ghost Hunt and FRIGHT

I've been watching different ghost hunting/paranormal investigation shows for a little over a year now, and I absolutely love them. A lot of shows I have some problems with because I feel like a lot of the stuff they do are extremely faked by the crew and cast of the show. However, most of the time I am absolutely enthralled by the events that take place on these show. No matter how much I enjoy these shows I always had a little doubt that the stuff that happened on them aren't real. So when I got an email about a real, professional ghost hunter coming to Moravian College for a ghost hunt, I jumped at the opportunity.

Friday October 22nd, Ross Allison of Advanced Ghost Hunting Of Seattle-Tacoma (AGHOST) www.aghost.org came to Moravian College to talk about the art and psychology of paranormal investigation and to lead an actual ghost hunt with willing students at haunted sites throughout the college. The program started a little after 8, there were some technical difficulties so it got started a little late, and Mr. Allison began with a powerpoint. In this presentation he discussed how he got into the field, what type of work it entails, how to get into it, what to use, and things he has done with it. He also included evidence he and his team had collected from previous investigations, and I can even describe how creepy most of the clips were, both visual and audio.

At about 9:30 he finished his powerpoint and announced that we were gonna go out and do some investigating. He gathered up a team of 12 from the approximately 35 students who were participating to handle his equipment in pairs. I was on the team and handled one of the two thermometers. There were also 2 EMF detectors, specter wands and something else that I don't remember. We were originally going to go to a couple haunted buildings here on the north campus but they get locked up at night and campus security didn't know about the ghost hunt and wasn't allowed to open them for us. So we walked down to south campus to go in a said to be haunted dorm house/academic building.

It was the Brethren's House. This place used to be a civil war medical hospital in certain areas before it got taken over by the college. We started in the one main hallway with all the lights off. Nothing much happened at first but during the time Ross Allison took a picture that caught an orb on camera and I had some big temperature fluctuations at time. (76 F - 70 F). Then we moved over into a music practice room that used to be a hospital room and did an EVP session and there was a big EMF spike. Then we went upstairs to the 3rd floor music department hallway and Ross claimed to hear women whispering next to him (I didn't hear them and I was close) someone claimed to hear shuffling down the hallway, there were some temperature and EMF spikes and someone caught an EVP on their cell phone recorder. It was a very distinct female voice saying "Hello?" We went to two more rooms throughout the night but not much more happened after that.

I was blown away by this experience. It really got me more into it than I had ever been just watching the shows. It made me decide that I want to pursue this at least as a hobby. I'm gonna collect all the equipment I need to start at a beginner level for Christmas and read up on the science and workings of how to do things right. My best friend, Colleen, is going to join me and I'm gonna see if I can get some more people with me to form a team. Have a few places already in mind for easy availability to start things off to do some investigating. I already have a name picked out for our future group. FRIGHT: F(ph)antom Research, Investigation, & Ghost Hunting Team. I can't wait for this! I'm so pumped! I never thought of actually doing this stuff for myself. Thanks so much to Mr. Ross Allison for inspiring me!

Until next time, this is Lizzie

It never ever ever ever NEVER EVER ends

Ugh. Yesterday was so perfect. And today is so NOT. And I'm so sick of it.

Nothing is easy. Especially not this. It's not even just, 'we'll change your meds and you'll be fine' thing anymore. It's, "well, you'll have to come back to the hospital every so often for this one med, then we can put you on the other one, and we'll see how it goes.' (Well, actually the doc is still saying that, 'you'll be fine' bullshit but I didn't believe her when it first happened and I certainly don't believe her now.) Then, she tries to sugarcoat everything by saying the results of the biopsy were fine, nothing but those ulcers by my incision sight. Well, excuse me for thinking that those ulcers are more than enough for me to handle right now. In addition, now I have to go to CHOP for a certain time period, just because the insurance people are fighting with us?! I don't live in Philly, hell I don't even live in PA! It's gonna be a God damn 2 hour drive in, probably at least a half hour of waiting once I get there, get stuck with an IV and be pumped medicine in me for ?2 hours? (I heard talk of 2 hours when my mom was on the phone with the doc but am not exactly sure what it pertained to), and then another 2 hour drive back. And it has some crazy time schedule too. Something like once a week for the first 3 weeks, then every 2 for some odd amount of time, then after 2 months, then six months..............then the expensive drug.

I'm so damn tired of this shit. This give and take, push and pull, happy one day and crashing for the next week. This is not right. This shouldn't even be happening now, dammit!

Crap, this could have been thrown at someone 100x stronger than I am. Not that I wish this on anyone, no one on the face of the earth deserves this shit, but why me? I'm not Lance Armstrong, dammit. I'm not strong, I'm not brave, I couldn't handle it before, I can't handle it now, and I never will be able to handle it. I'm not an optimistic person. I'm not someone who can just say, 'oh everything will be fine, I can fight through this, it'll all work out in the end' no matter how much I wanna be. I try.........God dammit I REALLY try...............but every time I do start thinking like that something will happen to bring me back down, or my mind just doesn't let me keep that attitude long.

I've been living a gigantic lie for two years. Thinking that this would all just disappear except for a recheck every 6 months and actually trying to enjoy my life. No. This NEVER goes away. It is and will ALWAYS be there. There will always be something. Ugh.

Trileptal

Smash. Smash. Smash. Smash. Smash. Smash. Smash. Crash. Crash. Crash. Crash. Crash. Crash. Crash. Bang. Bang. Bang. Bang. Bang. Bang. Bang. Boom. Booom. Boom. Boom. Boom. Boom. Boom. Pow. Pow. Pow. Pow. Pow. Pow. Pow. Snap. Snap. Snap. Snap. Snap. Snap. Snap. Crack. Crack. Crack. Crack. Crack. Crack. Crack. Splat. Splat. Splat. Splat. Splat. Splat. Splat.

We'll that certainly helped. *eye-roll*

Ramblings

Sitting here doing the same stuff I always do. In other words, a bunch of meaningless crap. It used to be a way that I could shut my mind up for a while, but not anymore. Hell, guitar used to be a way to shut my mind up too but that doesn't work anymore either. In fact, it stopped working before all these computer distractions did. I don't know what to do about guitar anymore. It's lasted all of 6 months so far, and I absolutely loved it at first, but now its not the same. Nothing's the same.

Everything has turned from, 'I'm gonna do this because I want to,' into 'I have to do this because its the only way I can get by without losing my fucking mind'. I think that's a lost cause though, I think I've already lost my mind. Even days when I have a blast all day with friends and/or family, I come home and crash. There's nothing holding me here anymore.

Even the things I thought I would always love and would never change, have.

1) Writing.
I've been a writer since 5th grade....well I was kinda sucky then but I mean I've loved it since then. That was 6 years ago.....been evolving in it, continuing with it, developing more ideas, and getting better at ever since. How could something you've been doing for 6 years, been passionate about for 6 years, has given your life meaning for 6 years, suddenly turn around and not mean anything? I'm not even sure why I continue writing. I guess it's because I've been told that I'm good at it and I have people who prod me about what I've written lately. I don't mind the prodding, it doesn't really affect me one way or another. It just kinda makes me write, but not sooner than I can make myself. I guess I enjoy it when I'm doing it.....but it's such a miniscule and short-lived high. Once I'm done with a passage of something I don't really even feel good about it. I just sorta feel like, 'that took longer than expected' or 'crap that was so much work'. It drains me, most of the time. The last thing I worte and really actually enjoyed every second of it was 'Jailhouse Rockers', which I wrote exactly 1 month ago. I've written 3 other passages to something else since then and I've basically just been 'eh' about them. 4 writings in a month....I used to do more than that. It's just not the same and it kills me.

2) Music
I've had a good number of music related obsessions. The first few didn't last really that long (Wicked, Moulin Rouge!, Legally Blonde...etc.). I still enjoy the tunes if I hear them, but I really haven't given them much thought since....last year. It's closing on exactly one year ago that I truly discovered Goo. I do like that, in about a week it'll be my one year Gooeyversary. I even bought myself a little Gooeyversary present, the Music in High Places Alaska DVD. It should be here right around my first Goo CDs' arrival. Well, anyway, that's a thrill but it's still just a tiny one. I remember how Goo made me feel when I first got LLI and SSCW (Well, I bought them at the same time but it's really just LLI that stuck with me at first. It took me a while to warm up to SSCW). I felt everything that was hiding inside of me. John's words touched my soul and they literally became my life for at least 6 months. Yeah, I mean my ENTIRE life. I didn't listen to anything else, I didn't buy anything unrelated to them, not one thought in my head didn't have some relation to them, all the dreams that stuck in my memory were about them (I've had 8 gooey dreams in total, the latest one just last night), I couldn't have a conversation with someone without turning the subject to them, and so on and so on. Well, I still like them and I still LOVE John but even they're different now. I really haven't listened to them in a long time. Waiting for their new album isn't even the same. I'm beginning to care less and less about it each day. Huh, I guess they were really just another distraction in my life and even they've lost their touch.
AVA too. I've only been a fan of them for like a month and a half but I was so hardcore when I first got into them. I've said before that I thought I enjoy them because they give me hope rather than make me face my past. Well, actually it really is a little of both. But now, that hope part has died. I've acknowledged it as false hope. I can't even sing anymore. I think about the lyrics and pick them apart and realize I'm never going to feel the way he does. There's nothing out there that I could create my life around that will truly make me happy. "It's all success if it's what you need/Do what you like and do it honestly" What do I need? What do I like? Apparently nothing anymore. AVA's playing in the background as I type but I'm not listening to it, not really. It fills my ears but I don't really process it, don't really FEEL it. It's just there to keep me from 'feeling the silence' becuase when I do that I go 'smash.'

Why do I even do this? It doesn't make me feel better, it doesn't get me anywhere. *sigh* I thought there was a solution on the horizon but I can't even have much faith in that anymore. This is all so deep, so profound, so suffocating, so daunting, what could possibly kill it from my mind? Everything that used to doesn't any longer. The first thing I tried to stop it hasn't worked. Why should anything else I attempt?

I don't know what to say anymore. I just DON'T KNOW. anything. Whatever. Oh well. I guess that's my release for today. Though I don't really see a point to it. *sigh*