Stuck

I'm stuck. My mind has been on a stand still for months. Writers block I suppose..

RIght Now At 1:36 AM

Sometimes it's so hard to keep your head up when everything around you is pulling it down. Sometimes it's hard to smile and laugh hen you have a millions reasons to frown and cry. Sometimes when someone asks you how you're doing it's hard to say you're okay when you hardly ever are. Every single day is unknown territory. There's nothing to prepare you if you need to read lightly or if you can jump in head first. Even when it's a nice clear sunny day the rain can just hit you like flash flood. But I think the hardest part of everything is actually trying to do all that stuff. Actually trying to keep your head up, smile and laugh, and say everything's okay because it takes all the energy out of you. You'd think at the end of the day you'd be tired, and you are, but this disease won't even let you. With all the pills you take, 3 of the 9 night pills everyday specifically to help you sleep. Sometimes they work just like they're supposed to and sometimes they just don't. You would think with 3 pills every morning, 3 pills every afternoon, 9 pills every night and a 4th pill somewhere between afternoon and night that it would fix everything. You would think with all the damn pills and all the damn exercise and all the damn diet changes that you would feel better. But you don't. Sometimes you do. No guarantees though. Is some freaking sleep to much to freaking ask for?!?! Apparently it is. Because it hasn't been a bad enough week already, lets not let you sleep. Maybe you'll get so tired that you will literally pass out. You can only hope and dream. Dreams are nice, but you only get them when you can remember them and you can only remember them when you actually get good sleep. I think it's safe to say I'm in a really bitter mood. And I can be as bitter as I want to be right now because I spend every single day being positive and strong. But I have every right to sit here and cry because right now it sucks to be me. It sucks it sucks it sucks! RIght now I just have no energy to be strong positive fighter girl, right now the only energy I have is to lay in my bed and cry till I somehow fall asleep. I'll be strong positive fighter girl when I wake up though because that's what you do. You fight and you stay strong and that's that.

In Control

It's kind of an amazing thing to see puzzle pieces coming together all at once. I've always believed that everything happens for a reason, that God reveals things at a certain time and place in your life and that He never gives us more than we can handle.

I've had this post saved in my drafts for a few weeks now because I've been so overwhelmed everytime I go to write something. My mind has been stuck in a state of shock and relief and disbelieve and sadness and grief and anger and hate and loss. All while searching for acceptance of the fact that I have Fibromyalgia. I'm sick and I will never be cured. I'm not normal, my body doesn't work like a healthy persons does. I have to take medicine for the rest of my life. I have to change my entire lifetyle. Not that it's so terrible as it is, but it has to be even better. None of this change is easy, and it's going to take a long time to figure everything out. It's a lot to handle when you're not even 20 years old and you find out all the illness and ailments you've had to deal with are because you've been sick your entire life and no one even knew it. It's a lot to wrap your brain around.

I've had symptoms since I was 4. Weird problems that never seemed to all be conected to one thing. I missed half of high school, totally bombed my first year of college and lost everything that ever meant anything to me. Sometimes things just hit you all at once when you realize how much it really effects you, even though you think it doesn't, it really does and when you realize it, sometimes all you can do is just cry. Because there are just no words that describe what you're feeling.

I never realized how complicated of a disease fibromyalgia really is untill I knew that I had it and I started researching it like crazy. It effects the autonomic nervous system. It's widespread pain throughout pretty much every muscle and conective tissue in the body. Debilitating fatigue, sleep disturbances, difficulty with swallowing, bowel and bladder abnormalities, ringing in the ears, numbness and tingeling, and cognitive dysfuntion. Fibromyalgia derives from new Latin, fibro-, meaning "fibrous tissues", Greek myo-, "muscle", and Greek algos-, "pain"; thus the term literally means "muscle and connective tissue pain".

As I think back on times when I was sick and my parents had no idea why, I realize that it's all related to Fibromyalgia. I've had issues with bladder infections for as long as I can remember, not just normal bladder infections either, one day it's a but pinchy and you can tell it's starting and the next day I'm peeing blood and it's a full blown kidney infection, no gap or bridge in between. I got my first one when I was 4. I've had problems swallowing food for as long as I can remember too, I got food stuck in my throat constantly, so much so that my mom took me to get a swallow study done. Nothing showed up of course. Nothing has ever showed up on any test I've ever had because there is no test for fibromyalgia. It's a dissease of elimination. You have to eliminate every other possible option before getting a diagnosis.

A lot of people would take this as my life is over, or just be depressed about it and want to get disability and stay in their house and do nothing about it. Not want to better themselves. Honestly I cannot imagine doing or even thinking like that. I've already been to hell and back with all the medical problems I've had over my lifetime and I will continue to have them for who knows how long. Instead of moping around and feeling sorry for myself I'm doing something about my situation. I can't change a lot and I can't control much, but there are things I can control and change and I will.

I'm pretty much being forced to be healthy in a way, which isn't a bad thing at all. I've been really good about working out and eating right the past week. I've ran/walked over 10 miles this week. I ran a mile in 18:28 and the day after I ran it in 17:42, my goal is to be able to run it in 15 minutes. I'm running a 5K this July, the Color Vibe 5K in Aurora, IL and I am SO PUMPED. Everything has just been whirling around me like a tornado and I've had no control over anything but I have complete control over this. I finally feel like I know what to do and how to deal with all this stress and chaos that's been present in my life for what feels like forever.

Reasons

feels like I've been waiting for forever
I don't know what to do
will you try and do whatever
to help me make it through

I keep running out of reasons
I don't know what to do
will you hold my hand forever
because I have to make it through

help me sleep tonight
all you have to do is let me inside
let me know your love will never change
don't forget to call my name

coming undone
come and find me
take me away 
I keep waiting

maybe it's all this distance
wrong directions keep me wishing
what a beautiful mystery
a story never told

my bright eyes
they look upon your face
we caught fire
and set all ablaze around

ashes remain just look around
we don't make a sound
we crumbled on the ground
don't leave me in the dark

feels like I've been waiting for forever
I don't know what to do
will you try and do whatever
to help me make it through

I keep running out of reasons
I don't know what to do
will you hold my hand forever
because I have to make it through

Somewhere Is Better Than Nowhere

I had a homework assignment last week for my psychology class. It was to write my own obituary. I thought it was really weird and I had no idea what to write, but as I was actualyl writing it it made me think. What if I died right now. What would I leave behind, what would my legacy be. What have I acomplished in my barely twenty years of life. I have a hard time talking about myself sometimes, most of the time actually. I feel like I'm bragging and I feel bad. But when I really got to thinking about my life, I realized that I've acomplished so much. I have been through things that no one will ever be able to understand and as much bad that has come out of it, there's so much good. I have every right to brag, and I should.
 
Obituarys talk about the death of a loved one and who they left behind, what they acomlished maybe, mostly it's up to their family. If I died right now I would leave behing my mom and my dad, who would be totally devestated. They've raised me in the best way I could ever ask for. I'd leave behing my animals. My dog Aly and my dog Honey Bear, and my guinea pig Lizzy. They are my whole world, I can't even imagine life without them. I know what life without them would be because I've already lost some and it just sucks. I don't have any siblings, I'm not close with any of my cousins and I never see them. My pets are everything. I would hope people would miss me, I know a lot of people who really would.
 
Eventhough there would be a lot of negative if I died right now, there's a lot I have to be proud of too. I was a published writer at seventeen. Twice, actually. I won first place in a literary competition for a story about my life and my experience going through my first knee surgery. At that point in my life that was the biggest thing to happen and I though it would be the last, but little did I know then HAHA. I've writen lyrics. I've written music. Some of my writing and my thoughts have never been seen by another soul except me, but some of it has been seen by hundreds of thousands, who even knows. My words that make up my poems, the feelings behind them, that mean so much to me at good enough to be in books. I'm good enough to be published among hundrds of other kids like me, all throughout the country. My words were picked out of tons and tons of entrys. While other kids are sad because they didn't get picked, I did! Being good at something and knowing you're good is one thing, but when other people, strangers, see it too, that means something.
 
I'm a musicican too. A good one at that. I play tenor saxophone, clarinet, amd piano. I read music, I can sight read almost anything you put in front of me. My life would be empty without my piano. I can't go long without playing it or listening to someone else play it. It keeps me sane. I play everything. Pop, jazz, hymns, classical, you name it. Classical is my favorite. I love Beethoven and Mozart, Vivaldi and Choppin, Tchaikovsky and Bach. The list just keeps going on and on. I love Beethoven's Moonlight Sonota, it's hauntingly beautiful and it just takes me to a place that is the most serene and wondeful to be in. I played it for an audition. When I hear it, I close my eyes and I can just picture my hands moving on the keys, floating along the melody. I can't even explain it. I've recived over ten awards at solo and ensemble competitions in middle school, vocal and insrumental. I sang a song my eighth grade year, The Sound Of Music from the movie The Sound Of Music, I can play that one too, and I sing along and it takes me to another place again. I won a directors award too, which in eighth grade is a big deal. Someone once told me that the way I talk about my music sounds like it's a drug and that's probably the only way I can even describe what it does to me. It's my drug. My addiction. And I pride myself on my musical talents, and that's because to be quite frank, I am damn good at what I do. Yes, there are much better pianists, but that doesn't matter to me.
 
 I used to be shy about all of this. Blogging, writing, singing, playing my instruments in front of people and even just talking about it all. Everything. But I'm not anymore. Hell I want whoever reads this to know it all. I used to identify with the sick girl, the girl that was broken but still held her head high enough to keep breathing. I never let myself identify with the good. The girl thats published, the girl thats talented, the girl that's not broken anymore. I was scared to write and for people to see what I wrote. Fear of it not making sense to someone else, but it doesn't matter because it makes sense to me.

If I died right now it would be tragic and sad and horrible and devestating. If I died right now I would have a lot to be remembered by. I would be remembered well. I would have left a mark, to who or what I'm not really sure, but I know it's somewhere and somewhere is better than nowhere and that's perfectly good enough for me.  

Decisions

I think there comes a point in your life when you have to decide what's worth fighting for. What battles are you going to fight to the death and which ones you need to just let go. I feel like I've been faced with that decision a lot in my lifetime. I'm barely twenty but I feel as if I've been to hell and back and I have the battle scars to prove it and the knowledge to get through it, to get through anything with a smile on my face.

I've been sick, I've been wounded, I've been hurt, I've been sad, I've been negative when I had every right to be, but I've been positive when I had every reason not to be. I've pushed through things when I could have given up. I've succeded when I had all the odds stacked against me. I'm here standing tall when I could have laid down and crumbled a long time ago. I feel like God has kept his hand on my shoulders through everything, he's been here holding my hand and getting me through it. I had every temptation to question him and ask why and be angry and spitfull, but I never did. Because I really do believe that everything happens for a reason and God has specific plans for you and your life.

I thought that nothing could be worse than missing half of high school because you were literally too sick to function and go to school. I thought the toughest thing I would have to face was having major surgery on my knee and spending months in rehab only to have compications and have it be dragged out for 3 years only to have another surgery in the middle of college. I was wrong. My first semester of college just topped it all off. I've explained it so many times and so many ways that I can't even do it anymore, but one word sums it all up. HELL. Seriously hell on earth.

If there's one thing I've learned it's figuring out who's a friend and who's a foe. Deciding what and who is worth it in the end and if it's going to effect my life in a negative or positive way. It's really hard though. To know what you have and to know what you have to do to make sure you're looking out for yourself and make sure you're doing what's best for YOU and not everyone else around you. People come and go, relationships happen, sometimes they last and sometimes they don't. Sometimes they're toxic, sometimes they're negative, postive, serious, fun, friendly, romanic, you name it. People are going to want you, need you, exceed you, take you, love you, hate you, play you, rate you, save you, and break you but in the end thats what makes you.

I have a hard time letting people and relationships go. I always want to fix things and fix people and make everything bettter and I feel like when I let go I'm giving up and I feel bad about it. I've learned that just because you give up on things doesn't mean you fail at anything, it means you know what's best for you and you know when enough is enough. That's where I am now. I've had enough and I can't keep wishing and trying and making all this effort when I get nothing in return. It makes me sad because I always try my hardest and a lot of the time I end up right where I am now but it's okay because I'm growing up and you gotta do what you gotta do.

Unknown

It's another one of those nights, I can't sleep, I can't stay still, and I hurt. I ache. I kinda just want to cry at this moment in time. I probably failed my christian bible midterm I took today, no biggie, that's how I feel everytime I take a test and then I do super awesome right? Wrong. I think that and then I actually do end up totaly failing it. Normally I'm really positive and I never let anything get to me, I blow it off and keep moving forword, but lately I'm pretty much the opposite. I don't know why and I don't know at what point I started being like this. I feel sad, and in my thoughts I think 'I'm defeated'. I've spent so much of my time and my life the past 3 years strugling, pushing through all the bad shit, keeping my head just far enough above the water to not drown.

Sometimes I feel like I'm walking around in darkness trying to fight the light switch and I just keep stubmling around getting more and more lost. I think the only thing that keeps me grounded is my faith. I honestly don't know how I would still be here holding my head up high if I didn't believe in God. I listen to music when I write, and right now I'm listening to this song called Everything Falls by Free. It pretty much sums up everything in these lines, "when everything falls apart your arms hold me together, when everything falls apart you're the only hope for this heart, when everything falls apart and my strength is gone, I find you mighty and strong, you keep holding on, you keep holding on." If I had nothing to hold onto I would have fallen a long time ago, and every morning that I wake up I'm thankful that I'm still breathing, that I have another day to live my life to the best of my abilities.

Sometimes, which is almost all the time lately, I ache all the time, all over, and everything hurts, all the time, all over, no matter what I do. I try not to dwell on the fact that I still put up with this mystery illness, and the fact that I have no answers. But for as much pain as I'm in, I'm still breathing, I'm still walking, I'm still brushing my hair by myself, I'm still getting dressed and going to class, I'm still doing my homework, I'm still thinking clearly, because when I first got this mystery illness I couldn't do any of those things, and you never realize how much something means to you untill you lose it.

I'm tearing up as I'm wrting this, because I'm thinking so much right now. I don't do that a lot, this whole thinking about everything I've been through thing, because that's what happens, I cry. I've been going to a counselor the past two weeks, and I've talked about a lot of this stuff that I filed away in the back of my mind. When I talk about it, which is the entire time, I just want to cry. I don't know why, I don't know if it's relief, or happiness or sadness or whatever else it could be. I think it's because I don't talk about it, because I don't like crying on front of people. I'd much rather cry alone in my room curled up under my blankets with my bunny. No one really knows about it because I don't say anything, because I don't know where to start, and even when I do, they just look at me with eyes full of pitty or something like that and I hate it, because I feel like I'm weird. Funny how I'm the one that's sick but I'm the one that feels bad about it? Doesn't really sound right to me, but I don't know what else to say about that. When people ask me how I am I say I'm fine because if I really said what was going through my mind they wouldn't know what to say. I think another part of it is that I'm just a really private person, I don't want my business out there for everyone whos nosey to know. I don't know who reads my blog, but it's different because even when I see someone viewed it, I don't know who, or where they read it from, it's totaly unknown and that kind of unknown I can handle.

I really just want to sleep right now. I have a 9:20 am class, so sleep would be really helpfull right now. I start to close my eyes and fall asleep and then I get so sore in the position I'm sleeping in that I have to move and I start all over again and again untill eventually I'm so utterly and completly exhasuted my body just colapses. It's kind of like deja vu for me. This is how it was way back when alllll this started. I would lay on the couch with my mom and listen to the sound of the wind blowing that leaves around outside. She would keep the screen door open in the living room for me, and she stayed up with me untill I fell asleep. Most times I would only get a couple hours of sleep at a time, because my body just couldn't stay asleep for any longer than that.

I get scared when I feel like this, because I don't want to be back in that place ever again. My hands and fingers feel like they are on fire right now, and so so so incredibly achy. From the tips of my fingers to the tips of my toes.

I want to be in my dreams, because dreams are always better than reality. Dreams are everything you wish your life was. I know when I have bad sleep because I don't remember my dreams. I can't remember them. It sucks because the times I can't remember them are the times I need them the most. I can't write anymore because it just hurts too much. I'll try and remember in the morning, my sweet dreams.