Kissa da Fighting Fish

As the pain gets worse it is great to know there are others out there who are behind me http://www.shareandmakeaware.org/

I am starting to think my body has a mind of it's own. I always had soooo many dreams as a kid. When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. The called a squad but when they Came they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn't call the squad. My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to probe that i was really blind. I walked into a sharp edged table and put a gash in my knee. She still didn't believe me.This went on for 7 months,no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Ceribri which is a build up of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves. I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn't a cure for that either but there is a high rate of remission. I went in and out 2 times finally in for a while. Flash forward to 2008 April. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced and they threatened my job if i didn't take it out. I almost wished I had walked away but hey....anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart....big no no. It went rouge and ran into the back of my left heel....I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out.....blood in my shoe wasn't customer friendly so the let me go home but I went to Urgent Kare. They said i sprained it and might got something else and to follow up with a different Dr. So I did. Went to a mouse of a Dr. he put me in a walking boot. My foot started hurting....more then I would think a torn ligament and a sprain would be. I kept telling the Dr. but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace.....he went to look at the swelling in my foot and he barely touched it and i flinched and pulled away. He finally said.....it might be RSD...but nothing was really said after. I stayed pretty laid up for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn't getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had RSD. I was so pissed and frustrated by this time that I wanted to spit. My mom talked to a Dr. friend of hers and he pointed us in the direction of the best RSD Dr. in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympthetic Nerve Block and did different narcotics. I ended up in the hospital after that with double the pain now. Nothing really helped. So about December he finally said that I should get a Lumbar Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain.....It works to a degree but I still got about 50 to 80% pain most days. I got it in January and now it is June and they are talking bout taking it out and starting at square one. My physical therpy dropped me till my dr. figures out what the future will bring. I am praying it will be a lot brighter then it is today. I am one of the lucky few to find out RSD in its first year.

Things are really rough right now. Mom went into the hospital. She has 3 ribs broken. It is really rough.....my leg has been bad. I lost a few of my friends the last few weeks because of my RSD. So they say. I am tired of life and thinking of staying away from other people for a while.

You never quite know what you have until it is gone.
It was yet another dull day in the small town of Eve, Ohio. I walked down the dusty road to school, wondering how I couldn’t bypass the headmistress outside the gate and sneak off into the woods to entertain my time daydreaming. I knew thought if my mother heard that I skipped school again, that I would never hear the end of it.
“Daphenie,” I heard screamed in my general direction before I could even make a feeble attempt to go into the woods. “Drats,” I thought to myself as I gathered all the strength not to charge head-on into the woods. It was too late, Headmistress Cole already saw me, if I ran now I would be disowned or sent to government school. I couldn’t think which was worse; I was weighing the latter as the worst when I heard my name yelled again. I walked slowly towards the gate, keeping my mouth pressed together in attempt to not say anything stupid as I passed through the gate.
I sat down at my desk, my other classmates staring at me. Why was I the only rebel in the whole state of Ohio? Hadn’t any of my peers wanted to just run away, not listen to what the teacher taught us? Apparently not since the stares that my peers gave turned to scoffs and then to disappointment as our teacher Ms. Windsor snapped everyone to attention and started class.
“Open your text books to page 184 and follow along as I read,” she said in her low gruff voice. I always imagined Ms. Windsor would be a really good dungeon torturer, no prisoner would be safe from her wrath. Also if the torture didn’t work she could bore your brain into a pulpy mush, maybe which would be a better, to die of boredom then die or the hands of someone else. I tried to pry my mind from morbid thoughts and concentrate on the lesson in front of me. Today’s lesson was on how the great war of Tyranny was fought.
The great war of Tyranny was a war against anything and everything that went against the Book. This Book was passed down from father to son till it became the basis’ of our country today. It caused many a war, because its content isn’t the same for all. As my grandmother used to tell me that the contents of the Book are translated differently to different people. I always wondered about this. Ms. Windsor’s voice broke through my daydreaming. She was now talking about the day they outlawed color. Now mind you I have never seen color before but I was always told that it wasn’t a thing to be played with. It corrupted the mind and damned the soul for all of eternity. There were armies of people who fought to keep color legal, but the government was too big and soon overtook them. Art museums were torn down, theatres burned; whole sections of towns and their population came up missing almost overnight. The government said that they were threatening the wholesomeness of our fair country. People who stood by the idea of color soon became a myth, kind of like Unicorns. Ms. Windsor insists that the government just asked the people to move to a different place, but I don’t know.
I must of fallen asleep or was far gone in my daydreaming because before I knew it the last school bell rang. Had I gone through school like a zombie all day?
I pushed all of my stuff into my backpack and started down the corridor to the front gate. The Headmistress stared me down as I walked out of the gate. The old bird needed a new hobby other than making sure I wasn’t making trouble. I walked down the lane the colorless decaying trees around me put a spark of foreboding in the air. I walked past and the trees seemed to have shadows moving among them. I quickened my pace just a bit, afraid of what I might find if I stayed in this area too long.

I was almost to the bridge when I saw something in my path. It was a piece of fabric but its tone was something I had never seen before. It was almost Angelic in quality and hopeful in style. It made my eyes dance as I looked down at it. It was mesmerizing the greatest thing, seriously since I first was born. I bent down to grab the fabric. The fabric was inches from my grasp when I heard a rumble from far behind me. I grabbed the piece of fabric quickly and stuffed it tight into my grip, and turned around expecting to see the headmistress had followed me to give me a scolding again. Instead in the distance there was a dark man. Angry and brooding he seemed to double in size as he came toward me. I froze not really knowing what to do. He came closer and closer and yet my body was refusing to move. Everything inside of me was yelling “Move!” but my body had gone deaf at that time. I closed my eyes praying this was only one of my daydreams. I was about to open them to prove that it was just a dream when a small firm hand grabbed my arm pulling me in the opposite direction then the man. The grab was so startling that it caused me to drop the cloth from my grip and my gaze centered on who grabbed me. A girl, who had to be a year or two older than me was motioning for me to follow her. Not just follow her to run, but why? I ran a dozen feet or so towards her then looked back. The man was closer now, I could see clearly now that he was carrying what looked like flashlight. It would have looked like a normal flashlight but this one was emitting a dark mist. The mist made the man even more terrifying as he took it out and shone the light onto the fabric far in front of me and the mist seeped out and overcame the cloth causing it to disappear before my very eyes. The girl tugged at me again, but before I ran too far I noticed the man’s whole body was emitting the mist. The pit of my stomach turned and I snapped around and ran almost passing the girl. I ran until my legs hurt and I ran some more too afraid to turn around to find the Dark Man still following me, his dark mist ready to engulf me no questions asked.

I was running so fast and so far that I didn’t notice where I was going. Soon the scenery became odd and not familiar. The girl was a stride or two in front of me but I could not seem to take my eyes off the way is shined and bounced in the sunlight. Her hair was something I had not seen before. Like the fabric, her hair seemed to be glowing as if it was on fire. Yet it had a different quality, something that our fire didn’t have. The light that bounced off her hair was exactly like the embers and sparks that would leap off of the wood in my hearth at home.

I followed her still mesmerized by her strands that I didn’t notice she had stopped. I looked around; there wasn’t anything out of the ordinary. The dull boring scenery was almost like the forest by school. The more I stared at the scenery around me the more I noticed something was a little off. Unlike the trees the girl and I had been running through the trees directly in front of us were not moving. The girl calmly walked forward 5 large strides and knocked 3 times on a tree trunk. The sound her knock made was hollow and not what I expected to here coming from the huge tree trunk. The ground below us shook slightly and from one side of the tree trunk a door opened and the girl stepped and she ushered for me to follow her. The inside of the trunk was hollow and there was a spiral stair case. The girl was a ways ahead of me before I stepped foot into the trunk. As I followed down the mood of my surroundings shifted from dull and blank to something else that I couldn’t quite describe in words. The girl stood at the bottom of the stairs with the widest grin and her hands on her hips. Her smile was blinding but I didn’t mind she had just saved my life and now I was beginning to believe I was in heaven. There were rows and rows of tents, unlike I had ever seen, some glowed, some seemed to shine, and all of them were a sight to be seen. The girl pulled me forward and a man completely dressed from head to toe in the fabric from the road came boldly out of the tent directly in front of us..

You never quite know what you have until it is gone.
It was yet another dull day in the small town of Eve, Ohio. I walked down the dusty road to school, wondering how I couldn’t bypass the headmistress outside the gate and sneak off into the woods to entertain my time daydreaming. I knew thought if my mother heard that I skipped school again, that I would never hear the end of it.
“Daphenie,” I heard screamed in my general direction before I could even make a feeble attempt to go into the woods. “Drats,” I thought to myself as I gathered all the strength not to charge head-on into the woods. It was too late, Headmistress Cole already saw me, if I ran now I would be disowned or sent to government school. I couldn’t think which was worse; I was weighing the latter as the worst when I heard my name yelled again. I walked slowly towards the gate, keeping my mouth pressed together in attempt to not say anything stupid as I passed through the gate.
I sat down at my desk, my other classmates staring at me. Why was I the only rebel in the whole state of Ohio? Hadn’t any of my peers wanted to just run away, not listen to what the teacher taught us? Apparently not since the stares that my peers gave turned to scoffs and then to disappointment as our teacher Ms. Windsor snapped everyone to attention and started class.
“Open your text books to page 184 and follow along as I read,” she said in her low gruff voice. I always imagined Ms. Windsor would be a really good dungeon torturer, no prisoner would be safe from her wrath. Also if the torture didn’t work she could bore your brain into a pulpy mush, maybe which would be a better, to die of boredom then die or the hands of someone else. I tried to pry my mind from morbid thoughts and concentrate on the lesson in front of me. Today’s lesson was on how the great war of Tyranny was fought.
The great war of Tyranny was a war against anything and everything that went against the Book. This Book was passed down from father to son till it became the basis’ of our country today. It caused many a war, because its content isn’t the same for all. As my grandmother used to tell me that the contents of the Book are translated differently to different people. I always wondered about this. Ms. Windsor’s voice broke through my daydreaming. She was now talking about the day they outlawed color. Now mind you I have never seen color before but I was always told that it wasn’t a thing to be played with. It corrupted the mind and damned the soul for all of eternity. There were armies of people who fought to keep color legal, but the government was too big and soon overtook them. Art museums were torn down, theatres burned; whole sections of towns and their population came up missing almost overnight. The government said that they were threatening the wholesomeness of our fair country. People who stood by the idea of color soon became a myth, kind of like Unicorns. Ms. Windsor insists that the government just asked the people to move to a different place, but I don’t know.
I must of fallen asleep or was far gone in my daydreaming because before I knew it the last school bell rang. Had I gone through school like a zombie all day?
I pushed all of my stuff into my backpack and started down the corridor to the front gate. The Headmistress stared me down as I walked out of the gate. The old bird needed a new hobby other than making sure I wasn’t making trouble. I walked down the lane the colorless decaying trees around me put a spark of foreboding in the air. I walked past and the trees seemed to have shadows moving among them. I quickened my pace just a bit, afraid of what I might find if I stayed in this area too long.

I was almost to the bridge when I saw something in my path. It was a piece of fabric but its tone was something I had never seen before. It was almost Angelic in quality and hopeful in style. It made my eyes dance as I looked down at it. It was mesmerizing the greatest thing, seriously since I first was born. I bent down to grab the fabric. The fabric was inches from my grasp when I heard a rumble from far behind me. I grabbed the piece of fabric quickly and stuffed it tight into my grip, and turned around expecting to see the headmistress had followed me to give me a scolding again. Instead in the distance there was a dark man. Angry and brooding he seemed to double in size as he came toward me. I froze not really knowing what to do. He came closer and closer and yet my body was refusing to move. Everything inside of me was yelling “Move!” but my body had gone deaf at that time. I closed my eyes praying this was only one of my daydreams. I was about to open them to prove that it was just a dream when a small firm hand grabbed my arm pulling me in the opposite direction then the man. The grab was so startling that it caused me to drop the cloth from my grip and my gaze centered on who grabbed me. A girl, who had to be a year or two older than me was motioning for me to follow her. Not just follow her to run, but why? I ran a dozen feet or so towards her then looked back. The man was closer now, I could see clearly now that he was carrying what looked like flashlight. It would have looked like a normal flashlight but this one was emitting a dark mist. The mist made the man even more terrifying as he took it out and shone the light onto the fabric far in front of me and the mist seeped out and overcame the cloth causing it to disappear before my very eyes. The girl tugged at me again, but before I ran too far I noticed the man’s whole body was emitting the mist. The pit of my stomach turned and I snapped around and ran almost passing the girl. I ran until my legs hurt and I ran some more too afraid to turn around to find the Dark Man still following me, his dark mist ready to engulf me no questions asked.

I guess my RSD knows that it is RSD Awareness month. Reflex sympathetic dystrophy (RSD), also called complex regional pain syndrome (CRPS), is a chronic, painful, and progressive neurological condition that affects the skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain. And in some cases, no precipitating event can be identified. RSD/CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and sensitivity to touch. Pain may begin in one area or limb and then spread to other limbs. In some cases, symptoms of RSD/CRPS diminish for a period of time and then reappear with a new injury. It is estimated that as many as 8 million suffer from RSD in the USA alone, that is 8 million people without a cure. Find a cure. Give Hope!! Today is still an awful pain day. Both my leg and my surgery site is killing me. I am frustrated with my RSD it just doesn't quit, it doesn't sleep, and when it comes to me sleeping. HA! That is funny....no sleep lately. The Parents and I are planning to go away to get my mind off pain. No where special just middle of no where. We are taking the dogs too! Woohoo my pup is really happy this will be a first for her. Oh I only imagine how dirty she will get. lol Yea idk when we are going though but things are looking good! I will put up pictures, the dogs are getting pictures taken while we are down there. Well I am gonna head out and try to relax. Hugs!!!

I haven't updated in a while. I had my first hearing on Monday. It lasted all of 30 seconds! We won and I got an extra allowance to my workman's compensation claim. The Parents and the Dogs and I are planning a mini vacation soon here in the few weeks ahead. The dogs are siked because this will be a first for them. We are gonna get their pictures taken while we are there! ............ My leg is really bad lately and mom is trying to get me out as much as possible. I am going to be stuck at home more because do to lack of funds Grandma is coming home from the nursing home. We are gonna make it work out some how. A friend of ours who works at the nursing home is going to help us take kare fo grandma and I am gonna babysit her kids. It is a easy gig, but still going to be a hurdle to jump. Anyway I am gonna add some pictures I did these past few weeks.