Sorry Yall

hello everyone...I am sorry i havnt wrote in a while....its been crazy around here....i started school yesterday because they have finally agreed to acomidate me in anyway possible...i had to be checked out today though because all the stairs at school was making my right knee and ankle hurt....i told one of my new friends about my EDS and she seemed understanding....i told her because she went with me to the nurse today and she asked me what was wrong and i told her and she asked what it was so i explained it to her....I also have a new symptom, varacose vains on my neck and chest....i go to the doctor in the morning so maybe we will have some answers about that soon....i am going to have to go to another rhumatologist because my other one couldnt see me until december even though my peditrition called and told him that it was an emergency....everyone (even the doctor) is worried about my back and chest......they are also on my feet and hands....well i will update tomorra when we find out something....lots of love SARAH

Hello

hey everyone...how are you all? i'm good enough...the doctor says i have a cyst on my ovary because of the ehlers-danlos, it can cause cysts because my body doesnt use the collagen like it is supposed to so it dumps all of the collagen in one area which forms a cyst...im not really scared because they said that the cysts will be benign....i have found an online support group for anyone that is interested...if you dont mind me asking, does anyone live near Tuscaloosa Al and have EDS or know someone who does? well i better go for now...lots of love, Sarah

Hello

Hi Yall... How is everyone? Good I hope... I have had a pretty good couple of days except for being sick...The doctors think that my mom and sister have EDS which is flippin awsome.... my pain is getting unbearable...After everything that I am developing a state of depression and I have started writing poetry again which is something I only do when I am depressed....I am thinking of putting some of my writing on here but I usually dont share my writing....I am so sorry I have not been posting alot on my blog, its just I am having alot of problems with my fingers...It is AWFUL....Well as always I better go...if anyone has questions email me at hells_angel95@yahoo.com Luv yall

SO SORRY

Hello All...I am sorry I have not got got on my blog in a few days, I have been gone and the computer I was using was slow as Christmas...I may have already posted this but I got my test results back and My heart is fine...Yippy!!! I have had a fever for about 24 hours now so I really dont feel so good tonight...I have found a couple of people around my age that have EDS which makes me really happy...It is a really hard thing to deal with and I think it will be awsome to talk to people that have it too...Well this is it for tonight and I'm sorry...Luv yall SARAH

FFFFFFFFFINALLY

I got my test results in yesterday...everything is fine (or so they think)...that is the best news i've got in a long while...I went to my regular doctor today, it was kool I guess...may have to do physical therepy soon...well i have joined a support group which is cool...I have been hurting pretty bad today, my fingers were even swollen....which was not fun at all....well i better go for today...luv all...SARAH

Today 9/9/08

hi all, today has been terrible...i couldnt sleep last night because my head hurt so bad....it was terrible...anyways my joints havnt been so bad today but i can still feel them (trust me)....the bad thing is that not only do i have the problems of EDS I also have migraines all the problems of a normal teenage girl....my momma helps me through the day but i have to handle some things that she just cant help with on my own....sometimes its just so hard...well my fingers are hurting so im gonna go...keep ur head up...SARAH

Today 9/8/09

hey all....today has been a pretty good day so far....unlike yesterday i am not hurting that bad...I rearranged my room, which hurt especially since i moved my bed....so, i may get to go to france which i think could be pretty cool except the fact i will have to walk alot which could make me collapse with pain in my hips and knees....well i gotta go watch tv with my momma...keep yalls head up no matter what happens...luv yall SARAH

Still no results....

Hello all who inhabit the world....between today and yesterday im stressed out like crazy.... people getting sick and getting ill and people getting in and out of the hospital... anyways my blog is not about stress its about EDS....I watched house (one of my fave. shows) last night and it breifly mentioned ehlers-danlos, the episode is called house's head for all that want to know....My test results still have not came in so that is upsetting me alot...we tried to call the other day but they keep putting us on hold and then never answering...thats one of the bad things about doctors....so why does it take so long? The only answer to that i have is the amount of patients they have... My Little Sister,Lexi...Little Brother,Trey... and My Momma are the people that keep me going everyday....Sometimes its so hard to restrain from staying in the bed all day and never getting up.....I have only done that once and it was because not only did i have the pain of EDS but I was also very sick....I know that i will make something of myself one day and i'm not gonna let this crappy disease get in the way of my life....I want to become a hematologist so hopefully i will be able to volunteer in the hospital sometime soon....I know im old enough i just dont know when it starts....anyways, I drifted off subject again.... The pain today and yesterday is unbearable, I barely said a word all day yesterday and I spent what I could of the day rolled up in a ball on the couch....That didnt last as long as I wanted it to because I felt bad for not getting up and helping with what needed to be done....So, My mom went to the hospital the other day and they had never heard of ehlers-danlos so I guess its because its that rare....I think my momma may have it to since its hareditary.....those are just my thoughts though it is no for sure thing....i think that is what she thinks too.....well like i say on every new blog, keep going on day to day and dont let whatever mental or physical problems (or both) keep your head up and never let it hang down...luv yall, Sarah

cant talk long tonight...today has been a crappy day...i have been hurtin all day and i fell on my knee this morning.....i successfully made hamburgers today through all the pain and swelling....i still have not got the results from my echo. that was almost 2 weeks ago and i havnt heard anything from them....well sorry yall but this is as long as today will get....gonna go to bed and hopefully wake up to a better day.....luv yall and just remember to keep going even through all your obstickles and everything else tomorra....LUV SARAH

Just another day...not so bad

today has been alright...not hurting near as bad as i would be any other day...i have been concentrating on bellydancing most of the day which has got my mind off of the pain...i guess thats how it works today....the only thing that is hurting really bad today is my head....ehlers-danlos has changed my life dramatically because now i have answers as to why i am hurting all the time and other symptoms that i have had all my life...hopefully i will have the test results from my echo. monday or so.....a girl can hope right.....i really hope it comes out ok, im pretty sure it will but as of right now i am scared to death of what is gonna happen.....i was talking to my mom the other day about what i want to do with my future...i told her that i was going to have a carrer until the pain becomes so unbareable that i cant work anymore....i will have a family and friends...im not going to let all the problems that go along with eds put my life on hold....i refuse.....well i guess i better go....luv you guys and hold on another day with whatever problems you may have....Sarah

a new day

today is a sucky day...my sugar shot up really high today along with all the pain....i had to ride in the car most of the day which meant i couldnt move that much.....monday will probably be better because i get to exercise....i am still waiting on my test results which i hope will come back alright....anyways as bad as today has been my hands are hurting so im going to go ahead and get offline and go to bed so maybe tomorrow will be better.....luv you guys

Echo. Today

hi guys....i dont know how everyone elses day has been but i know mine has been crappy. I had to have an echocardiogram done today to make sure i didnt have micro valve prolapse, dont know the results yet but i will soon enough...I was so scared of what they were going to do but i ended up almost falling asleep. Every time i would dose off she would turn the volume up on the computer and my heartbeat kept me from falling asleep...everyone told me that there was nothing to worry about today but there is a little feeling in the back of me that keeps me from believing them...its one of the most scary feelings you can imagine not knowing for sure if your your heart could explode or anything else like that is really scary...I really just want to help people my age and/or younger understand that they are not alone and if they need someone to talk to, i really understand.....well thats my blog for today i may get back online later and give more updates and advice.....love yall

How it started...

hi guys...my name is sarah and i am 14 years old....for the past 2 years i have been hurting in my joints and other symtoms have gradually came along.....i have seen every kind of doctor that you would think about that would treat joints and never got any answers...for about 3 months i was in remission or so i call it and when the pain started again it was so unbearable i went to see a new rhumatologist who was amazing.....after 2 visits with him i was diagnosed with ehlers-danlos syndrom....that is about where i am in my life.....other than the pain and all of the other symtoms i am a normal teenager......well i will go...will have more news tomorrow....