why do i want to feel? I'm crazy!

you know that hopeless feeling you have when you cant find or see the good of what you are doing? i have been feeling that way recently. i do not see how far i have come sense i first started going to counseling. I am supposed to practice looking for the progress i made. i feel like i will never be able to see the good only the wrong things i do. i can not shake myself from judgmental thoughts. i often wonder if i will still be on earth in 10 years. part of me wants to be alive with a family. the other part that knows medically i am not stable, my body is ever getting worse i do not think i will be able to move in 10 years due to the pain. i feel like i am working so hard for no good long term reason. i wish i don't wish my EDS away it keeps me grounded to reality, but it is hard to see myself alive in the future. i just want a mercy killing in all honesty. i am sick of the pain of my night terrors and of the temptations that hold me captive. i am feeling much more then i have in my life and it is so strange to feel anger or fear and not shut down emotionally or mentally to protect myself and the others around me. i feel like i am a crazy monster women with raves. i am unsure what to do about this. feeling is scary and new for me. i wish i could turn it back off like a light switch like i used to. but i am so tired of feeling numb i want to be human again. i want to thaw out and feel and live. i don't understand why but i just cant let it go and quit. 

Davids Moods Swings are so Confusing!

Today I read the bible for the first time in a couple months perhaps longer. I feel refreshed but at the same time I am having trouble keep up and not get distractions. I am not only upset that I cant focus but I am very confused about David. The ways Davids moods swing so quickly make it hard for me to understand what is happening in his Psalms. 
At first David is comforted because God will never leave him and will protect him. Half way through the Psalm he becomes angry. He talks about how he hates these people and how he wants God to destroy them. How can he go from comforted to very angry so swiftly?

how to learn from Dodge Ball about life

i have been thinking much of late on the meaning of life. one thing comes to mind each time i set my mind upon the subject. i recall some months ago my school had a dodgball competition as a practice of encouraging each other. i learned that day a very valuable lesson it was much more important than what was intend to be learned.

being in a wheelchair and longing just for once to do what others do has been deep seeded in my heart and so i lined up with the rest of the upperclassmen and as the whistle blew i wheeled down to the line to try to get a ball, failing to do so i grew anxshuss for a ball to nail someone with in my haist i caused 5 people to callide into my wheelchair and hurt them self. at the time i blew it off as them being a tease. later that night i started to realize the smallest things will effect the big things in life. a simple game of doge ball seemed so harmless but as a  result of my desire to be like everyone else who walks i hurt others.

it is so easy to forget that life is made up of the little things that seem so meaningless but indeed make up the majority of life. i feel as though paying more attention to the small things would make more a wiser person in myself.

GI testing

Today i had an upper endoscopy done early this morning. My GI problems are getting worse i can only eat 4 foods and drinking is really hard. my GI doctor has ordered a series of testing to figure out what the problem is. today i had a scope done to get pictures of my upper GI tract and esophagus. tomorrow i have a modified barium swallow to have a clear picture of how well i can swallow and where i choke also will show us what i can and cant swallow. im hoping that these two tests will give us insight as to what is wrong so we can fix it. bland mushy food is getting kinda old...

living with elhers danlose syndrome

i have decided for this blog to be my outlet for me to exspress my life with my elhers danlose syndrome.
i was diagnosed with eds 3 years ago. i grew up with alot of medical problems being born 24 weeks early leaves you with repercusions so naturally i grew up in the doctors office. i always had alot of pain that was dismisssed as being a drama queen or growing pains nobody paid mind to it. as i grew older in junior high my shoulders and knees started to dislocate alot i was always on and off cruches and boot casts... the 2nd semester of my sophmore year my health really took a nose dive and thus i embarked into a spiroling mind boggoling search as to what was wrong with me. i went from doctor to doctor being poked prodded questinosed streched squeesed pulled and tested as though i was a lab rat not a human going through high school and having no energy to do my work in excroshiating pain and no idea what was happening to me. my migrain speshalist finally listened to what i had to say she told me she thought i might have eds so i went to a genetic speshalist where i was questioned streched bended and pulled once more and it was confirmed that i have a degeneritive conditon that can not be cured and there is very little to help me. if i have chilidren i can pass it on to them and cause them to have this horrible condition grow up in agony and lonesome life.

elhers danlose syndrome is genetic and degeneritive condition it causes your conective tissue to be lose and that makes you dislocate and have bad muscles. the only thing that helps is physical tharopy and sometimes medisons such as nuroton or lyrica can help. most doctors dont know what it is and there is little that they can do for you. as you get older the more you dislocate creating more agony for you to be in. you dont have time for dating or hanging out with friends because you hurt so bad and are so tired. if im not in teh doctors office i often am lieing down with high pain and am exosted. i feel like a hurmit that cant come out of its shell.
i need help doing simple things like getting out of bed puting cloths on showering rolling over. life for me is really hard i want so much to make a differnce in this world to live and to love for god alone. i dont want my EDS to ensnare me from that. for the past 3 years i faught to graduate high school and although it was really hard i was out sick a lot and in and out of the hospital. the last couple mounths of my senior year i went to home bound school and by the grace of God i graduated. some times i want to give up but there is a deep drive in me to press on to not let my EDS dictate to me. i want to fulfill all my dreams even if it takes a long time im determind to live life as best can.

what is life?

i feel trapped in so many ways
trapped within my mind
trapped within my soul
trapped within my body
trapped within the walls of my house
and of the walls of my doctors

i am ordered to get out to do normal things for my health
but how can i obey?
i am imprisoned forever it seems
i can only sit up for 2 hours at most
i have no time for anything not even needed doctors

i wish for life
i wish to make a difference in tis world
i wish for people know that disabled people are not helpless
but yet hear i am helpless imprisoned and longing to know the world out side
i look through a window into the lives of others
i know not their ways
i know not how they live nor what they do
this is aggravating

healthy people take for granted so many things i struggle to do day by day
i wish to teach them of our life of how we live
how can i do this if i am in bed?
what is my purpose in this life of pain and confusion

why is life so confusing?

i have been feeling like i have no purpose in live! i live in a world of doctors and lots of rest, my pain only gets worse, my muscles wont agree with my joints im in so much pain even though my muscles are getting stronger my joints get worse its terribly confusing. i am not able to work im not able to go to collage at the moment i cant really go out due to pain and i feel so useless it makes me restless... i don't expect people to understand what my head is going through its a big jumbled up mess i cant sort out, i long to do something good in the this world and how can i do that if i cant get out of bed or sit up for longer then an hour. what good am i? i don't want to be one of those people who gives up on life just because i have elhers danlose and hurt all the time i want to make the world a better place but how can i in  a bed? am i really any good to this world? what can i do? i need something of meaning to do or i am no good to this world... a friend said she will bring me to Joni and friends Arizona to meet her friends there, says my testimony will be good for them says my determination to be the best person i can will be a good thing but i feel useless right now. i wish god would tell me what to do... me and god haven't been so great right now which is another confusing mess i need to sort out in my crazy brain.. reading the bible is hard to do and praying im so out of practice.. i feel close to god and and yet far away... nothing in life seems to make sense, i hate it...

life in a nursing home....

today is my first offishal day in the nursing home were i will get intensive physical tharopy and rehabilitation. i gues its surves as a double for rehab to help get people like me or surgery paitains stronger... so far ive not found anything fun todo maybe ill go meet anne the knitter here she promised to teach me to make a hat i will see. im so board right now.... everyone here seems so loanly or screwed up i hope things get better soon... oh well im trying hard to trust in god that this will make my fibromiagia better. updates on what tomarrow brings will come.

God is always providing for me!

i have just come out of the rehab speshalist and the visit was very helpful she has ordered me a script for wrist braces that are speshal made i can even pick what color i want them to be and patterns! i also get speshal ankle braces and a back brace! im excited for all this because it means less disolocations i cant wait!

my wheelchair fitting is still unknown when it will happen but the chair will be manual with some power also it will be much more suportive to my hips and back which means less pain as well! All this to say i am in high spirits dispite the pain i feel all over.

God always provides for me and my needs, i even get a home teacher but am still able to be part of valley this means alot to me. when i was told i had to chose between health and school i couldnt do it so God provided me with the ability to have a teacher come from the tempe school district and work with me. im not sure when this will start hopefully soon but i am very greatful because it gives room to rest and go to my doctors with out worring about the work im missing. i dont know how all this home bound school stuff works but it sounds helpful and good so im game!

peanutbutter

i dont know if ive spoke of my beloved dog peanutbutter yet. but i have a sweet adorible hiper and protective dog who is very much like a child. i never thought ownig a dog would teach me parenting skills but i have been learning so much. controling my temper w hen he gets into things or runs me into a wal in my wheelchair on a walk because he wants to make friends witth the nabers mean dog behind a fence. ive had to learn what and how to teach him things. he is ver smart i taught him to bark when he knows someone is smoking becaue im alergic to the smoke this way i can avoid them but several weeeks after mastering that he tried to bite some ppor mans butt because had a cigiret and his pack was in his back bocket... after htat i learn i need to be careful of training him to do amazing things but work on control in it.

wow been to long!

dear reader my life has been very hectic over the last few months. my laptop has kicked the bucket completly so school work is all hand written (very tiresom) my health has been poor. my pain from the fibromialgia and elhers danlose has been so bad ive been hospitalized 3 times, december, last week and this week. its now to the point where my doctors cant really help  me i need to go to a speshal rehabiltation hospital for intensive care. at the hospital i will be getting majer physical tharopy, pshyciatry and counseling learning bio feedback and self hipnosis as well as do school work and who knows what else. they say this is best for me but i am not sure if i will do it, im so close to graduating i want to do it with the school ive worked my butt off to get where i am. i will have to talk with my school to see what options i have if i can cut back some classes and get a tuter i can do most of what would happen at the rehab place and still live at home and go to school part of the day. i want to do whats best for my body but the dissions are so big im not sure which way to chose. i think ill pray about it research and decide after i talk with my school. please pray for me either this is life changing and i do not want to quit school because of my sickness it would devistate me.