Dealing with the never ending up's and downs of Ehlers danlos syndrome

It never change's

2010-05-15T17:09:00.000-07:00

I was layen in my bed the other night thinking about everything that has been going on and thinking what have we done to make all this bad stuff happend to us . I mean i know stuff happend's for a reason but there is no way that stuff can go so worng for so so long like for my poor mother been in and out of the hospital for the past 5 months and only been home for like maybe 5 week's out of those month's ...

Then my dad haven more of the spell's were he black's out and he will not go to the doctor and he fell just the other moring and his leg's are covered in sore's from him not taken care of him self and i have to dress and change the cover's on them. I have to help mom with shower's getting dressed and i do all the cleaning ,cooking ,wash and ect. in the house dad dose some but i do almost all the work then if i am in pain i can't stop because if i don't do it nothing will get done.

I have blacked out about 3 times due to so much stress and i have no one to help me .i have to go with mom to her doctor appt's and work my own appt's around her's , when dad dose go i have to help them both .... and no one is here to help me i feel so alone i have no friends to hang out with or to vist i am stuck in this house 24/7/365. I have very little time to myself .. I am breaking down all the time crying ,getting mad and so on but i can't help it i try not to get mad but you have to understand there is only so much one person can take.

I am so depressed ,alone, and i feel so useless in my own life i can't do anything like i use to . Mom and dad tell me all the time that i am such a big help but i don't see it all i see is someone who has no life, i can't drive because of my eyes and i don't know i just don't know..

Feeling so alone

2010-04-30T11:33:00.000-07:00

what do you do when you find yourself feeling so alone with no one to talk to . I find that i am haven such a hard time dealing with everything i am getting so sick of beening in pain everyday of my life and i am sick of family members asking me how i am feeling when you know what i am going to say.

Because if i say and i am not feeling well they get upset and then it makes me more made because if them know what i am going to say then why ask me . i know that i am not alone because i have my friends on facebook but still i am alone in my world . i have no friends where i live . and no one to talk to i have lost all my friends or so called friends from school .

never there......

2010-04-29T17:50:00.000-07:00

They say friendship's last a life time well in my case that is never true. When friends say that they will always be there for each other you think ( Great i have someone that i can talk to when i need support and they will have someone that they can turn to as well) But then more people come in to your life's and then you are just pushed to the side and then when something happend's you have no one to talk to but then when they need someone they call you and they want you to listen to them .

But friendship is a two way street not a one way and if your not going to be there for your friends then what type of friend dose that make you . i know i have many friends on facebook and please don't get me wrong i love you all !!! but there are a few that know more things about my past and more about my life and i have known these people for like 5-6 years.

But when your life is turned upside down and then you find yourself all alone it hurt's.

You can't trust family and more !

2010-01-03T15:48:00.000-08:00

For those of you who know me know that i have 5 step slibbing's and all HELL has broken out here . Last month i saw that one if them was posting very hurtful things on her facebook page like ( I am so sick of hearing someone talking about how hard their life is and she is not doing anything to make it better.) and ( Well if this persson would get off their butt and try to find a job that may help) . Well i though she was talken about one of her sisters but when i sent her a email and she never wrote me back i knew it was about me. Later that night my dad called her and asked what was going on and she told dad to tell me to stop posting thing's about how i am doing and feeling that she was sick of reading stuff that i post,

Well i was in the room with dad when he called her and he told her not to read my posting's if she didnot like reading what i posted. So a few hours past then i get a text sayen ( you always have to go running to dad don't you ! well i am blocken you from my page.) i texted her back and said fine i never want to talk to you again.

So that brings me today mom dad and i were sitting in the livingroom talken an dad sliped and said some thing well my bitch of a sister told him that i was ( maken all of the stuff that is wrong with me up , that i am a druge seeker and that not telling the truth ect.)_ So i hope to hell she is happy because i will never talk to her again !!! I HOPE YOUR HAPPY BITCH!!!

It's time to welcome a new year.

2009-12-31T18:15:00.001-08:00

Well thank god that 2009 is almost done!!!! This has been a very hard year for many people in my family and our friend's . Mom and i have been haven alot of health problem's and i need more surgery back in july and thank's to this world's health care system i almost lost my life . But i am still the care taker for both my mom and dad and i have to also have to take care of myself.

But something's have gone well i have gotten a pain mangment doctor to help me with this chronic pain from the EDS, FIBRO, CFS . he changed my pain pill's and changed my other pain med's and it seem's to be helping and i hope i can keep it under wrap's . I also have manged to get my headache under wrap's but some thing is telling me i will need to call my doctor because i have been getting small headache's.

But all and all i hope 2010 is a better year.

Good hope's for 2010

2009-12-26T16:33:00.000-08:00

Well with just a few day's felt in the year i hope next year will be better for us all. With mom's health and my health i hope this will be better for us and with dad i hope he will get better too. Thank's to my once stupied sister and her big mouth i will not be talken to her any more because what she did is unforgiveable. and dad is not speaken to her but i mean he has five other kid's and not one of the give's a dame about if they mess up christmas like they always do.

we all slepten in on christmas day and that was nice and we all got up and watched some tv then we all ended up fallen asleep. so we had our family dinner so that is about it for christmas.

no christmas sprite

2009-12-14T18:07:00.000-08:00

Some people can be nice all year round and then there are the people who love to hurt you!! i have a face book account and stuff that i use to talk to my eds friends and to keep up with family well someone in my family was posten very hurt full thing's and i foumd out they were about me .

they said ( i am so sick of hearn about how hard you life is, you don't do anything at all to make it better.) and this came from someone that i really loved so we found out who had said it and then i got an text message that said i am removen you and i nevre want to hear from you agian.

so i have one thing to said to that person and that is SCREW YOU !!!!!

November - The month of EDS

2009-11-15T18:48:00.000-08:00

November 3,2003 was a day that changed my life forever. That was the day we were told that i had Ehlers Danlos Syndrome. In some ways it was a shock to us and in other way's it was not many years had gone by and mom always knew something was different about me and she knew something was not right because i was getting hurt all the time and no one was able to tell us why but now we knew why we knew i had EDS but little did i know how it would change my life.

7 years have pasted and it has been a living hell for us all. Me haven to be in and out of the hospital for surgery's for problems from the EDS, Haven doctor's tell me that it's all in my head , friend's beening lost because of my illness and friend's dieing from it , and now haven a friend who is very sick because of eds.

But the thing that make's the hole thing so hard is that i went to USF on friday because my heart doctor was worried about EDS and heart problems . So i had this set up for a year so i go and the stupid doctor tells me that i don't have eds . I just sat there and cried for years i am told one thing and this person tell's me this without doing the test that my doctor asked to be done to check me for different types of eds.

I was alone mom could not come with me because she is not well so i went to the appt by myself and i am told that i am crazy!! that the pain i am haven is because of my depression and that i have no eds trates!!! My life is turned upside down i don't know what or who to beleave anymore.

So this is a life of hell...

New doctor today.

2009-10-30T01:19:00.000-07:00

Well the day is here i go to my frist appt with my new pain mangment doctor later this moring my appt time is 10:30 but i have to leave here around 8-8:30. to get there because he is along way from us if anyone knows about florida i am in saintpetersburg and this guy is in brandon so its a long drive.

Iam happy to say that my headache's have started to go away after a month and a half ugh i was getting so sick of my head hurten me all the time and this was not one of those headaches were you could just go on with your everyday life this one was keepen me down . I didnot come out of my room much at all i mean for like the past two week's i have maybe come out of my room 3 times but that was to leave the house for other doctor appt's .

Well i got back home around 2:30 this afternoon and i was so wiped out i took a nice hot shower and a nap . so here is the update !!! This doctor was so nice and he knew about eds and stuff so he was asken me where my pain was today and luckly this was a bad flare day so he could see how it effected me . So he asked me about all my med's and i told him that if my current pain meds were helping me i could not feel and diffrent. So he changed my pain meds and he upped one by 100mg's . and he told me he wants me to have phsical/aqua therapy so i will call the place on monday.

So all and all this was a great today !!!!

The Climb ( a song by young Miley cyrus)

2009-10-22T16:55:00.000-07:00

I can almost see it

That dream I am dreaming

But there's a voice inside my head saying

"You'll never reach it"

Every step I'm taking

Every move I make feels

Lost with no direction

My faith is shaking

But I gotta keep trying

Gotta keep my head held high

There's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be a uphill battle

Sometimes I'm gonna have to lose

Ain't about how fast I get thereAin't

about what's waiting on the other side

It's the climb...

The struggles I'm facing

The chances I'm taking

Sometimes might knock me down

But no, I'm not breaking

I may not know it

But these are the moments that

I'm gonna remember most, yeah

Just gotta keep going..

And I, I got to be strong

Just keep pushing on

'Cause there's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be a uphill battleSometimes

I'm gonna have to lose'

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb, yeah!

There's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be an uphill battle

Somebody's gonna have to lose

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb, yeah!

Keep on moving,

keep climbing

Keep the faith,

babyIt's all about

it's all about the climb

Keep the faith, keep your faith, whoa

Headache's

2009-10-18T16:39:00.000-07:00

Its so weird i will not have a headache for like 2 months and then out of the clear blue sky i get one and it will stay for like week's or months . I went to the nuro and he want a scan of my head and he put me on a new med but it was not cover and so i am still with no headache med's and the doctor cancled my head ct . No one even called to tell us that and we were on the way out the door to go.

But i geuss i will see what happend's well i am going back to bed my head is killen me

Pain

2009-10-15T16:15:00.000-07:00

This is something i wrote the other day when i was at the doctor's office

Why do i have to suffer alone in life
why must i fight this invisable fight everyday and everynight
Why must i lay in bed squrriming in pain unable to rest find my long to short day.

Why must i put up with people's give me dirty looks
It must be that they can't see my everyday fight. they judge me on my looks
and what i do why do you care it's not like its you.

I have many things wrong with me it's a given fact.
It must be it must be that you can't see what is wrong with me
So you seem to prejudge that.

I fight alone day and night this invisable fight
some people will never understand and that dose not seem right.
I ask god why must i suffer alone day and night
Why must i fight this disease all my life
why must i suffer in pain .

Everyday and Everynight.

By
Megan Tharp

Sayen good bye to my friend and new doctor's

2009-10-13T17:49:00.000-07:00

Well my friend Brittany and i have been haven a blast and we have been running all over saintpetersburg. Going to the beach , the pier, and the old fort and the Mall.. It has been so much fun hangen out with someone who get's me and what i deal with . But the only thing is that its been very very hot and ugh that has been hell to deal with and i live in this heat all the time. brittany dose not i mean its hot where she is but not like the heat down here...

Here sre some of our fun pic's

we did our hair !!

we are oooh so thug ..

Here are some photo's of my pet's she took!!!

These are some pic's brittany took..

I know we are weird hehe....

The shells we found when we were at the beach hehe it was fun ! Some of the pic's from Fort De Soato beach and historical park. It was fun and we got so much sun burn..

It was all going great but when we got home from the beach i could not touch my ear's and its because they both were infected .....UGH i will not get another any thing like that done again. So we had to go down to the er for them to take them out Oh God that HURT.....

My ear's before they got to them!!!!Nurse Phile

Sad because they are going to take the new ear rings out.

Callen dad and told him the news

Where the wild girl's stay !!!

2009-10-01T12:42:00.000-07:00

I know what you thinken what the heck is she talken about well saturday the 17th my best friend Brittany is commen !!!!

I asked her two year's ago if she would like to come and stay with us for a few week's and she was like yes!!! So last month i got her plan ticket can i told her that the dream trip was on !! I know she is worried about commen here and stuff because you see we have never seen each other we have only talked on the phone and on the web. I have to say i am a little worried to because i am scared that she will not like me but i know it will all work out .

So she will be here for 2 week's and thank god the weather is changen and getten alittle cooler so it will be nice . I do feel bad because she will be on a plan for like 5hour's but it will all be worth it just to see my friend for the frist time. I also know she is worried about money i told her not to worry this is a gift we both have stressful live's and it will be nice for her to get a way for a little while.

So brittany i will see you on saturday !!! CAN'T WAITE !!!

Yay and new doctor that can HELP !! WRONG!!!!!!

2009-09-21T21:13:00.000-07:00

Well today was the day i would see if this new doctor could help . Well my appointment was at 3:15 and mom and i got lost going to the office when we got there its was 3:45. and the girls in the front were very nice and they said it was not problem. so i did the paper work and then we were showen to a room and we were only in it for maybe 5 minute's if that before the doctor came in ! I was like wow that was fast. so he came in and asked us what was going on i told about how i was haven a horriable time with typen moven my fingers and how they would slip out of joint..

Then came the question very one who was EDS had been asked !! DO YOU KNOW WHY THIS IS GOING ON ?????? I proudly said yes i said i have Ehlers ~Danlos Syndrome!! The doctor looked at me then at my mom and said in such plane word's OH!!! He said he has never heard of anyone haven EDS nor has he treated some with it !!!

My high hopes went down the sink like my sprite did 2 minute's before he came in. Any ways he asked me to show him my hand's and i said ok hopen that he would not kill them . Here are some photo's of what he asked me to do.

He had me pull my thumb back on both hand's to see how far they could go!! upper is (left hand)

here is the (left hand)

hand layed out flat finger's hyper flexed!!

Well if all that was not bad enough he started tryen to pull my fingers out of their joint's so he is pushen and pullen and bending my finger's every way they could go. He then said well i don't think your finger's have ever popped out because i can't MAKE THEM POPPOUT OF ALINEMENT!!!! My mom's jaw dropped i said well they do popout just because you can't pull them out dose not mean they don't .

So then i asked him about the ring splint's for them and he said well you can't wear splint's on all your finger's or all the time. So long story short i am not going back to him and i am going to have to find another way to get my ring splint's . Below are how my hand's looked when i got home ..

Fave song that helps me in hard times

2009-08-28T14:02:00.000-07:00

I am a big David Cook fan and have been from the frist time i saw him on AMERICAN IDOLE. I listen to his songs on my mp3 player at night when i am tryen to get some rest but one song helps me keep my head up high the song is called (HEROS)

As the sun goes down in front of meIt reminds of me of where I want to beWith you and you aloneHold me in like you were made for meI'm losing faith in gravityI just need to let you knowAnd I just need to let you knowI'm not going to come downDown off of these cloudsAll these heroes come and goBut you're still standingYou teach me to rise upTo open my eyes upAll these heroes come and goBut you're still standingYou're still standingYou know the world's confusingI don't careI crawl into your atmosphereI know you'll make it rightYou're all I need to knowI'm not going to come downDown off of these cloudsAll these heroes come and goBut you're still standingYou teach me to rise upTo open my eyes upAll these heroes come and goBut you're still sandingI believe that you can save meAnd you'll never let me fallI'm not going to come downI believe in what you've shown meThere's ahero in us allI'm not going to come downDown off of these cloudsAll these heroes come and goYou teach me to rise upTo open my eyes up

Life sucks

2009-08-27T12:27:00.001-07:00

Finally more News updates!!!!

Well the Amoxicillin i have been on now for over 3 weeks is finally taken hold of the Upper Restory Infection . Two weeks ago mom had to take me down to Bayfront because i was getten sick and my Doctor was out of the country and i called the office and they said that i could not get in so mom and i end up going to Bayfront ER because that is were they told us to go and well we got there are 10:30am and did not leave till 6:00PM !!!
So i was give a diffrent type of amoxillin to take and it did not help so mom took me to the walk in clinic last Thrusday because i was still sick as a dog and getten worse . Well it turns out i all also had a case of very bad tonsil infection so geuss what had to come out NOW!!!! Great another trip to bayfront in the next few months.
Not going to be able to see the pain doctor because the car's A/C wants to act up so there gose that trip.So no pain meds for a month or two because my medacare dosenot start till october so and there are no more pain doc's that will take what i have now so i have to waite.
But on the hole i am doing better i am all healed up from my last surgery the doctor is going to keep me in his system because he is really the only doctor that will do surgery on me because of the eds. Soo that is all i have to report for now ..
C-YA

You find out twho your friends are (WARING HAS STRONG LAUNGE)

2009-08-18T16:43:00.000-07:00

I got a email from a so called friend last night i wanted to share it with you, I can't belive how hurt full the people you once thought understood you could be ...

Dear Megan.

You know i though we were best friends i call you up to hang out and you give me some stupid ass reason why you can't like your sick or your in to much pain ! Come on if you don't wanna hang out with me if then tell me and it would not be a problem but your not tellen me the truth and i know that there is no way your sick very week end and shit like that. Girl your such a fucken lier .

Your the worst frind someone could ever have , I wish i never got to know you, yes i tell all my friends about you and they all think your full of shit. I saw you at the store the other day with your mom and you looked fine your not sick you lien pice of shit!!!

I never wanna speak to you agian and i hope to hell your happy that you just lost a 2 1/2 year friend ship BITCH!!!

happy to be home

2009-08-03T09:48:00.000-07:00

Well i got home late saturday and the doctors told my mom anddad that the Ehlers danlos did cause the herina so we hope it willnot make any more of them . Then a nuse at the hospital almostkilled me she gave me to much pain med's it is stoped my breathenso i woke to a oxygen mask and all of these nurse all around metryen to get me to breath.
So after that i was not able to have pain meds for 12 hours andthat was HELL.. But i am home and i am happy to be home but i will update more later

2009-07-21T11:33:00.000-07:00

Starten on Wensday the 29th i will be at Bayfront Medical Center 701 6th St. S. Saint Petersburg, FL 33701. my surgery is at 7:30 am

Hospital main Phone 727-823-1234

Cell phone- 727-515-4990

so give me a buzz if you alike

We may be getten a new game plan going

2009-07-17T19:01:00.001-07:00

i have a friend who is 16 and she has eds and we are good friend of the family and her mom told us to call and to find out about something called (Palliative care) this is something that hospice offers !! Yes i said hospice but that is not just a place you go to died they can help you with dealen with pain and for people like us that may just what we need ,they help you live your life better .

A long painful road ahead for me !

2009-07-16T15:35:00.000-07:00

Well today started out like any other day for me and well that mean pain and more doctor appt's . well mom and i made a early moring run because i had to drop a gift off to a friends little girl at All childrens hospital ! well i was inside the store and i bent over then it happended part of my intestiens got twisted up in to one of my hernia's . Oh my god the pain was so bad i thought i was going to die the pain shot through me and in to my back , I could not sit stand or anything.

I got into the car and mom knew right then what was wrong i called the doctor and they told me to go to the ER even though i had only 1 hour before my appt. So mom ran me down to the hosptial and then she went next door to all childrens to drop off the gift. So i was in with the nurse at the er and this lady was just plane nasty to me she said ( well if you have a doctor appt in one hour why are you here !!!) I told her i called the doctor and he told me to come right down . Well after said was nasty to be i got up out of the wheel chair and said them to for get it because i did not need this crap right now.

So one of the men to take people to and from the hospital to their cars came and got me and mom looked at me i told her to forget it and so we called the doctors office and they said just to come down. So we got there i was not even in the door and one of the nurse came out and said come on back! So my doctor who is Dr. Huguet came in and told me that this has to be taken care of now !!

So i am going in for surgery on wesday the 29th of this month to have my hernia's fixed so that is my update for right now !

Some update

2009-07-13T17:55:00.001-07:00

Things have been a little hard for me from june up to now. I went and saw my pcp (main doctor) last week and he asked me about my pain in my stoumach and i told him its not that bad but i am haven bad crampen and alot of gas and i have not clue why??? So he is senden me back to the doctor who took out my GB to see if he can help with my tummy!
Heart wise i am going ok i don't have to go back to All Childrens heart clinic till the fall which is a nice break for me i mean i love my doctors there but not this much lol!! But DR. Martinze is keepen a close eye on my heart and my PVS to make sure it dose not get out of hand!
Eye wise DR.Hess said that my eyes are ok and he can't find any thing to do with eds in my eyes which is good .
The bad news time. I am haven alot more pain and joint problems and my left knee is action up agian this is the same one i hurt 2 year's ago when i fell.Also i have to get 4 teeth pulled because the eds is maken my teeth very thine and they hurt so this happends on the 23rd of this month Can you say (ALOT OF PAIN OH GOD NOT LOOK TO THIS )!!!!!!!!
Now for the big trip in the fall i am going to go back to USF Medcial center and going to be Re-typed for EDS to make sure there is nothing funny going on i go there in november on the 7th i think .
Oh Mom and i are going to be interviewed by fox 13 news same time soon and its goign to be a thing on EDS . I took to on myself and wrote to the doctor who has a spot on the news and she said it would be a great ieda to do a show on eds. Not sure when it will happen but i will post when i know .
WOW I GEUSS THAT WAS ALOT (LOL)
C-YA ZEBRAGIRL OUT !

On T.V.

2009-07-11T07:05:00.000-07:00

Big news my mom and i called the local news channel and they are going to do a story with mom and i about eds !! I don't know why it will be but i will update as soon as i know something

The worse friend!!

2009-07-09T19:21:00.000-07:00

I feel like i have let so many of my eds friends down because i have not been able to be there for them and i feel very bad because of this . My health is going down hill i have 4 more doc appts this month still no pain doc appt. I have to get 4 teeth pulled because of the eds and then i have to go see a doc about my tummy for more surgery!!

To all my EDS FRIENDS i am so so sorry i have not been there for you . i am just really fighten to get up everyday.

Sorry took so long

2009-06-22T08:34:00.000-07:00

Hey everyone sorry its taken me so long to repost but i have been haven a hard time . I have been in so much pain that i have been in bed for the past 3 days and i spent my birthday in so much pain i couldnot endjoy it . But i have been getten my headachs back so i have been so druges up and nothing is helpen . I called my doctor this moring and told the nurse that i want the number to the pain clinic .

So i hope he calls soon because i can't take much more of this pain. I have not been sleepen much at all and if i do fall asleep its only for like 1-2 hours. so i just wanted to pop in . My mom found a good way to help my dry mouth she got a snow cone maker from walmart and its been very handy

will but date agian soon.

New Stuff commen up !!

2009-06-10T17:40:00.000-07:00

Sorry i have not posted more but i was in the hospital for 4 days last week !! i called my doctor because i have been more stomach pain and it was not leten up. So he told me that if got any worse to go down to the Er and mom and i said ok. So on June 2nd my uncle and mom ended up taken me down i was in really bad shape i could not walk , stand ,sit , or for that matter lay down .

So we got to the er and they started a I.V. can gave me some pain meds and then the doctor order a C.T. scan and x-rays with all the info in hand the doctor came back to the room and told My mother and i that i was not going home . My mom and i just looked at each other and we said why ?? The doctor said you have a Intestinal obstruction !! I just sat there with a look on my face that said WTF!!! she told us that my intestinal track was twisted up around my colon.

So my mom went home with my uncle and i was taken upstairs to my room and they have me on just I.V. fluids and NOP ( nothing by mouth) it was like that for 2 dayz and i was so druged up because i was in so much pain. Well around 5:30pm i geuss it became untwisted because i felt soo much better and i was able to use the bathroom !!

So my doctor come in around 10:30 pm that night and asked how i was feeling i said well a lot better but i am still very sore. With out missen a beat he said you will be for a few dayz .

Well i have not been out for a week and mom had to take me back to the ER on Monday because it happened agian and this time i had to drink four glasses of contrast ( that stuff is nasty ) and it was twisted agian and so they gave me some meds i can't rember what it was but it untwisted it so..

That is what is going on i do to my doctor in the am to see what the plan is

TOOTH ACHE

2009-05-31T16:25:00.000-07:00

OMG when you have eds haven a tooth ache hurts worse then a normale one !!! I have a bear taped to my head to check my face warm ! the pain is so so BAD!!!!!!!!!!!!!

Newest up date !

2009-05-26T21:00:00.000-07:00

Hey everyone i am so sorry ihave not posted sooner but i have been sick and i have been very very down . Frist off i am out of my anit- depression med's and i can't get more beucase the mental health place is not going to carry the cymbalta anymore and then they gave me something different that i have tryed and its make me very very jumpy and i was breaken down and stuff like that.

So i have to waite till June 11th to go back to my (PCP) and see if he can give me the cymbalta agian because i was feelen pretty good on it . I am still haven trouble with my GI track and i have not been able to get to the GI doc because my health coverage has changed and i now have my medicade card so i i have to waite till june.

My pain (UGH GOD I HATE IT !!!) i am going to ask my doctor to send me to a pain clinc because the pain is getten so bad i am chewen on my lower lip and its all sore and bleeded and stuff. so that is not good . my lortabe is just not doing it any more and i feel so sick all the time and half of the time i do get sick !

I go back to the heart clinc on june 1st for them to check out my (PVS) and to see if my heart is ok from the EDS. but other then that i just try to take one day at a time because that is all you can do .. AND DUCK TAPE NEVER HURTS TO USE TOO ...

Not so good news :(

2009-05-14T16:52:00.000-07:00

Well i went to the doctor 2 days ago and i found out some not so good news ... Frist off we found out i have 2 hernia's one is on the wall of my stomach and the other one is looped around my colon. Now i have to wait to see a GI doctor god only know how long i will have to waite. But what got me mad the most is that i had this CT scan done at the ER last month when my mom took me and I can't belive my Doctors office didnot call and tell me or have me come in sooner.

I mean its bad now but with the EDS that makes it worse. I don't know what to think anymore..

sorry this is so short but we have bad storms in the area so i will make it longer later.

Carzy Life....

2009-04-29T08:41:00.000-07:00

Oh my god i feel like i have been running around like a chicken with its head cut off !!!! Between doctors , Er trips and more. Mom had to take me to the er last weekend because i was doubled over in pain becuase my stoumch was hurten so bad and we have found out that i have a ulcer..
So i have to stop taken some of my meds because they will make the ulcer worse but at the same time they are some of the meds that keep me going and that help with my pain. On top of that i am still waiten to get my new health card from S.S.. because my pcp wants me to see a stoumch doc and the health incs. i have now will not cover it so i am in hell so in the mean time my doctor gave me some thing called (carafate 1 mg) to help coat my stoumch and gi tracki have to take this before every meal and at night. and i was put back on (zantca 150mg ) two times a day.

My pain is getten worse and i need to see a pain doc which i will start next month i hope i have found one that will take me and he seems nice and he said he will do what he can to help me cope with the pain from the EDS, FIBRO, so that is nice to have a doctor like that . there has been talk about putten a med port in me so when i am in alot of pain they can just inject the meds but i will all so be on pain pills. and i will be going back to USF for more testing and to be retyped for EDS. because we know i have type 3 with type 4 overlay but my doctor and heart doctor want to make sure there is nothing els going on.

I am still able to walk (knock on wood ) becuase i have a lot of friends with EDS and its really i hate to use the word but its crippled them . I do use my cane and stuff alot more then i use to and i use the eleciitc carts at the stores.

well that is all for now ..
huges to all my friends..

New heart problem....

2009-04-09T06:46:00.000-07:00

Well i went to the heart doc yesterday for my bp check and for my pvc's. I have been feeling very run down and tried lately so my heart doc did a ekg and bp on me and then i was called into his office. My heart doctor is one of the nicest men in the world he cares so much about me and all of this other clinic kids and adults.

Well anyways i found out i have some thing called ( Pulmonary Valve Stenosis) this is when the valve opens to let blood flow from the right ventricla to the lungs is narrowing . In my case its not very bad right now which is good but if it gets worse they will have to do one of two things and others are 1. a heart cath .or 2, heart surgery agian soo well will just have to wait and see what happends .

But about my pvc's these are extra heart beats and it gets very boredsome to me so i have to wear a loop heart monitor till may 7th . I can take is one off and on for showers and stuff so . Dr. M said he is going to wait and see what comes up before he dose anything he said we may end up putten me on heart meds for it so . that is the update for now .

Oh and i am sick agian soo that is all

bye for now

I WON!!

2009-03-30T08:39:00.000-07:00

Well my day has come and i have finally won my S,S case !!! I can't belive it ! it's been 6 years and now i am soo happy . I will be able to go to doctors that i need to see have my med's all paid for . so i am just happy . i know this is short but i have the flu and i am back off to bed ..

Heart clinc @ ALL CHILDRENS HOSPITAL

2009-03-06T17:24:00.001-08:00

Well i got to ach at 9:30 am and i got checked in to the heart clinc and they did my EKG and stuff but when it came to my Bp amd heart rate we had a big scare. My Bp was 160/100 that is very bad and my heart rate was 105 so they did it two times and it was the same so they put me in a room and then doctor martinze came in and asked how i was feeling . I told him i was feeling very rundown my chest was hurten and stuff and then he saw what i chart said ! I though the poor man was going to hite the floor he said your bp has never been this high . so he went and got the nurse and he said your not leaven yet we have some stuff to do .So i had to go to 3north on the other side of the builden and get labs and a chest x-ray STAT !! well i got them done and half way back to the office i got a very bad headach and so when i told the girls i was back i just layed down on the row of chairs and then they took my Bp agian and it was 158/90 heart rate 96. so the nurse told me to lay on the table and she turned out the light for me . Dr. martinze and Dr. F came in and talked with me and all my labs were ok but one my infulmation (sp) one was high so i am now on mobic for the chest pain and i just now got off the phone with the on call doc because my Bp is back up agian so i have a feeling i will be back at ACH on monday !! Oh and i am on a 24 hour heart montior till then too .. fun fun !!

Keepen Hope Alive

2009-02-18T17:08:00.000-08:00

I try with all of my heart to belive that god has a plan for me , and that is why i must suffer but lately i find myself thinking that my life is more of a pain filled hell . I just can't understand why i have to suffer so much , what i have i done worng that god is maken me live a life of pain.My doctor's don't know what to give me to take the pain away, they don't know why i am haven chest pains , or why i am haven these headachs that have been going on now for 2 1/2 months . I am just finding it very hard to cope with everthing that i have to handle . I mean i am to young for all of these things to be holding me back . I was told that by the age of 23 i would be in a wheel chair full time . That has not happened but i am in one alot of the time and i have to use my cane and a walker but alot has to do with the pain . I just can't see the light at the end of the tunnal and i am running out of hope .But i know i can't let this illness take over and i know i can't give up but you have no clue how many times i have wanted too. I can't let this win i just hope i am storng enough to hold on to HOPE ..

Sick agian !

2009-02-17T10:43:00.000-08:00

Hey well i am sick agian i have been this way for two weeks now and i am not getten any better i have had two rounds of meds for this upper resptory infection. All i know is that i am coughing like crazy, My sinuses hurt ,and my throat is killing me .

What makes to even worse is when i am sick i hurt like hell and non of my pain meds are worken for the pain plus i have tooth ach on top of all of this .

Well i am going back to bed C-YA

Holding on to hope

2009-02-16T01:10:00.000-08:00

So many dame pill's

2009-02-09T06:56:00.000-08:00

This is my pill bag. this is every day.

I am so sick i needing to take so many dame pill's it never stop's . I think i am up to 13 aday now and that is not counting my 3 for pain ! Those don't even help anymore and i can't go to pain mangament because my health incsurnce will not pay for it . So i am stuck in pain hell ! I can't rember the last time i wasn't in pain.

Here is what i have to take-

Lortab 10/500 , Flexeril 10mg , Klor-con M20 20MEQ , Doxepin 25mg, Propranolol 40mg , Zantac 150 mg, Midodrine 5 mg, Fiorinal , Tigan 300 mg, Citalopram 20 mg , Gabapentin 300 mg, Meclizine 25 mg, Micronor pack 0.35mg , Centrum Cardio , Baby aspirin 81mg , loratdine 10 mg.

That is all of them .

Still dosen't get it !!!

2009-02-07T16:52:00.000-08:00

you know my dad still dosen't get that i am in chronic pain all the time i could be layen down because i am hurting and he still asked me to get up and do crap . I ask why can't you do it and i will get ( because i am asken you to do it ) or ( i hurt) Give me a break !! i know normale people hurt too but this pain is nothing like the pain i have to deal with day in and day out .

Yes i do things not because i wanted to but because i have to i have to pull myself out of bed every moring and go to doctor's , shoppen and other stuff even if i am hurting like hell and still no one get's it . I am on 4 things for pain one is for neavr pain and one is for muscle pain and then there is some thing for my head achs and then my pain pain.

So when you say you hurt and think i am going to feel sorry for you , GEUSS AGIAN !! Your pain goes away Mine DOSEN'T !!!!!!

Sick of been sick

2008-11-25T19:39:00.000-08:00

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

Going for yet another scan :S

2008-11-03T07:57:00.000-08:00

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

What i do in my spare time

2008-10-26T08:57:00.000-07:00

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

Just something i wrote early in the year

2008-10-25T09:17:00.000-07:00

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!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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

Haven a ct scan in the am

2008-10-22T16:53:00.000-07:00

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 !

As if life is not hard now .

2008-10-21T17:04:00.000-07:00

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

2008-10-21T08:07:00.001-07:00

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!"

Dealing with the never ending up's and downs of Ehlers danlos syndrome

It never change's

Feeling so alone

never there......

You can't trust family and more !

It's time to welcome a new year.

Good hope's for 2010

no christmas sprite

November - The month of EDS

New doctor today.

The Climb ( a song by young Miley cyrus)

Headache's

~~~~~~*Pain*~~~~~~

Sayen good bye to my friend and new doctor's

Where the wild girl's stay !!!

Yay and new doctor that can HELP !! WRONG!!!!!!

Fave song that helps me in hard times

Life sucks

You find out twho your friends are (WARING HAS STRONG LAUNGE)

happy to be home

We may be getten a new game plan going

A long painful road ahead for me !

Some update

On T.V.

The worse friend!!

Sorry took so long

New Stuff commen up !!

TOOTH ACHE

Newest up date !

Not so good news :(

Carzy Life....

New heart problem....

I WON!!

Heart clinc @ ALL CHILDRENS HOSPITAL

Keepen Hope Alive

Sick agian !

Holding on to hope

So many dame pill's

Still dosen't get it !!!

Sick of been sick

Going for yet another scan :S

What i do in my spare time

Just something i wrote early in the year

Haven a ct scan in the am

As if life is not hard now .

My eds story

Pain