Tuesday, November 25, 2008

Sick of been sick

I am so sick of this life of mine . I can't even have one day with no pain , i am sick of the lies and i just want to crawl in a hole and never come out . My pain is getting worse and pain meds don't help at all and i just don't know what to do.

I am sick of people treaten me like shit and of people treaten me like i am crazy. i am not crazy i live in Hell . People are like will it can't be that bad . shit no one gets it or even trys to i wish some of these people would try to live in my world for one day ..

They would not be able to do it .. i can't do anying any more i can hardly walk , i can't get out of my own bed and i need help just to put on my socks.. i can't even rember the last time i did not have pain .

well i am going to be i hurt to much . here is a video i made

video

Monday, November 3, 2008

Going for yet another scan :S

Well i got a call from the doctors office on thrusday and they told me that my health incesurence finally said ok to the HIDA Scan. I have never even hear of this thing before so i go on wesday its at 8:00am so we have to leave the house around 6:30 or 7:00am .. I am not looken forward to getten up that early .

I have been haven alot of problems with my tummy and i see Dr, Saba my pcp on the 13th of this month for all the info on the scan's and test that we has been orderen on me . I never wish for anything bad but i just hope that they find something to tell me why i am in so much pain.

I have been sleepen alot and stuff and i have no erengy and i plane hurt . so here is some info on the HDIA SCAN and what i can and can't do !


HIDA Scan

HIDA With Ejection Fraction (EF)
Do not have anything to eat or drink for 4 hours prior to this test. Do not take any narcotic anagesics (pain medication) for 4 hours prior to this procedure. Do not have a barium or CT contrast procedures for 24 hours before this exam.

for info please go to this link !!!
http://www.webmd.com/digestive-disorders/gallbladder-scan

Sunday, October 26, 2008

What i do in my spare time

Well i got the idea from my friend bunny! i have started to make these like dolls that are half person and half bunny. I have made one so far and it did not turn out so great but i am worken on my 2nd one and this one looks better.

I have also been drawen alot and playen with my ps2 and on neopets. i have done 4 pics in the last 2 nights and i have been online alot .

well i have to get back to my doll maken ..

byebye

Saturday, October 25, 2008

Just something i wrote early in the year

If i think it i can do it.If i belive it i can do it.No one can tell me that i can't do it. Just because they think that they know me on the outside dosen't mean they know me on the inside. every day i think of the troubles that i have. I just keep telling myself yes i can.When i feel like i have no were to turn and i just stop and relaxe and dream in the back ofhead and my mind tell's me yes i can . When i go out to do my favorite things. People just belive that i can't be like them just because iam be different. They ask me all the time why do i continue to try .I say why not i am just like any other teen inside .Then they look at me and say on way there is no way you are going to try and play. They tell me to goway and get lost and. I try not to cry but then that little voice in my head tell's me to rember one small thing .If i cry i only let them win .but if i try i can only win .SO i would only say one little thing to myself and then.i would goout and do it because YES I CAN!!!
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I wake up in the moring and i can't get out of bed agian. i just stare at the wall hopeing someone will walk in .When mom walk's in she said honey do you need help getting up agian.I look at the with tear's in my eye's and just shake my head.I am sitting up looking out of the window .wondering what will my day be like.I start to move and i am filled with fright .Then i start to hear it my jiont's popping in and out . I just put my head in my hand's and i just want to shout.I why me why now i was so full of life and now and now my life is just shot down. And i alway's start thinking this.Why me why now .This is a test of my inner faith and will.But then i reamber what mom my alway's tell's me .You have your trouble's and i have mine .But we are living well now and in to the next day

Wednesday, October 22, 2008

Haven a ct scan in the am

Well i went to the doctor today and he ordered a ct scan of my tummy because i have been haven bad pain for like 2 months now and nothing we do has helped so he said lets try this and lets see what shows up.

So i got a call later in the afternoon and they told me what i can and can't do before the test and they said that i have to drink 2 Barium milk shake's (yuck ) those things are so sick :S . so my test is at 10:45 am and i have to drink one at 8:45 and another one at 9:45 so that is all for now !

i am going to bed because i am in pain and i have the flu too oh joy so so fun !

Tuesday, October 21, 2008

As if life is not hard now .


You know its hard as it is to try and live like a normale person when you have a chronic illness and when other people don't understand what your dealing with and it hurts more when doctors think you maken it all up or they think your after pain pills . But what hurts the most is haven people in your own family who don't understand or they think they you are maken stuff up just to get attention .


What makes it worse is when they talk about you behinde your back or to other people about and you find out about it by mistake. I mean if your normale that is fine but not everyone is the same i would think that people would under stand this by now . I know i have alot of problems that have come up more like with different pains and other things . But those people have no clue what i would give to have one day with no pain and no health problems.


I know and other family members know that i am not maken it up and because they see the everyday hell that i have to live with and these other people only see me off and on . But i know i am not doing this stuff to get attention from anyone for what it is worth i would love to be like that kid walken down the street who is healthy and normale .


So if you don't know what your talken about just stay out of it , Because i know i don't look sick ! Be geuss what I AM !! AND I AM NOT NORMALE!


My eds story

My life story starts the same as anyone else. When I was a little kid I was sick all of the time and I was in and out of doctor offices and hospitals all of the time. My family even now says that they can't remember when there was a time when I was not sick or did not have a injury. When I was young I started to have trouble with pain in all of my joints. But no one understood why. I had test after test done and nothing ever showed up. Doctors told my parents that these were just the normal pains of growning up but my parents did not take that as the problem. Not only were my mom and dad very worried because I was getting so sleepy all of the time, they told the doctors that I had trouble feeding when I was very small. But as I grew up it became more troublesome; not only was I having pain all of the time but now my joints were dislocating. I was very active when I was at this age and of course when I went to the doctors for the injuries they would say it was just a normal sport injury because so many people in sports dislocate joints. They would say the pain is just part of it and that it would go away in 2 or 3 days. But days and even weeks went by and I was still in so much pain. I would be back at the doctors "being so hard headed" but they would just brush it off. We were told that if we were so worried about me getting hurt just to wear support braces under my clothes when I did any type of sport. But my mom being a mother knew that something was not right. Over the next few years I was having more trouble with more of my joints so I stopped the hard hitting sports like volleyball and basketball; I even stopped dance classes because I was getting hurt so much. Things started to look up for a few months but then it happened: my hips began to pop out when I would try to get up off the floor or out of chairs. Then my knees started to go and I would fall over because my knee caps would move and my knees would give out from under me. But I was to afraid to tell my parents or doctors so I just kept quiet. In high school I joined the bowling team and I was having so much fun; but then my shoulders started to pop out and dislocated all of the time. Still I never said anything because if the fear of no one believing me or understanding me. But my parents knew I was in pain and that I was not telling them because I would go to bed with icepacks on my arms, shoulders and knees all the time. One day when I was bowling my arm dislocated so badly that I was told I would need surgery to fix it; however, when I was born I had a heart problem, so I had to get the "ok" from my heart doctor to have the surgery. Well when I went for my pre-surgery check-up my heart doctor said that I could not have it because there was still a problem with my heart.So at the age of 15 I had a heart cath' then 1 month later I had open heart surgery to fix something that was wrong with my heart. Well about 1 week in the hospital then I got to go home and I spent my sweet 16 getting better after heart surgery. Two months later, I started have pain in my shoulders and neck and no one knew why. So there I was, back in the doctor's office and when the doctors saw me I was rushed next door to the hospital for testing. They did blood work and a spinal tap (that is a big needle put into your back - not fun!!!). That showed nothing so I had a heart echo done and that showed a lot of fluid around my heart so the doctors had to drain it. After a few days in the hospital I went home I felt so much better after that. Well, a year passed and I had my shoulder surgery. That got fixed and I had no problems with it so I got to go back to school and I was like, "Ok, I am normal again." I went back to my old life of playing sports and hanging out with friends. One day I wanted to try out for the football team and one of my teachers was the coach. I asked him if I could and he said, "Sure." Well, it was almost the end of the day and I was talking to my friend when someone tripped me and my knee dislocated. So my friend helped me up and helped me walk to the clinic and I had to call mom to come and get me.We called my doctor when we got home and he told us to go right to the ER. We got to the ER and waited and waited. The doctor came in and said that my knee was dislocated and that they would have to pop it back into place. Well, the nurses came in and put in an IV and gave me some pain meds and something to knock me out. I woke but my leg was hurting so bad the doctors told me that I shouldn't be in pain because my knee was back into place. I told them I was in pain, and they were like, "Well the pain must be in your head!"Well my knee just kept popping out and so I had to have surgery on it too (when I was 17). That was the most painful thing I have ever had done to me. I hated myself for needing it done, but it did not do the job - I still have trouble problems with my knee. And, Christmas break and I fell down the back steps and I hurt my same knee so mom took me back to the ER and they popped it back into place. One of the nice doctors who knew me very well came in and talked with us. He asked if my knee was still popping out and we said, "Yes, along with other joints now." He told us that he would be right back. When he returned he had a medical book in his hand and he read us something he found in the book. He told us it sounded like what I may have. It was called EHLERS-DANLOS SYNDROME (EDS). My mom and I just looked at him I said, "What is it?" He said this syndrome can make you have many dislocated joints and a lot of pain. He told us he wanted me tested for it. So I went to one more doctor and they did some blood work and a bone scan done and guess what?I have EHLERS DANLOS SYNDROME. It took doctors over 18 years to find out what was wrong with me. Just to be sure, my mom and I went to USF and we saw a new doctor who took one look at me and said, "There is no way that you don't have EDS." So he did blood work and all of these other tests. That was over 6 years ago and I am not normal and I never will be but I can only take life one day at a time and that is the only way you can live life. I still live in pain all the time and I still have my joints that dislocate but as long as I have good friends that understand and my family, I know my life will be ok. The thing that needs to change is the awareness of EHLERS DANLOS SYNDROME. Because if you go to some doctors and you tell them what is wrong with you they will not treat you because they know so little about it and because they want clear-cut easy to treat patients. Well, some are like that and others are not. Please help share the word that EDS (EHLERS-DANLOS SYNDROME) is real and there are people out there who have it!"