Re: Get this guys---------- unbelieveable

[Guest guest]

TJ

You;re always welcome to vent. It is so very frustrating to have doctors

such as that jerk. I haven't had the medical problems like most of you on

the list but I know how I would be feeling if it was me. I am heading to the

US on Sunday (flying into Orlando Florida and then driving to Daytona BEach

and as per suggestions I am taking a crap load of medical information should

something happen. I also just wanted to say I have taken everyones advice

and gotten myself an appointment with a vascular doctor ( my request) also I

have an appointment with a neurologist to talk about my recent MRI. I also

am having an abdominal CT done in June (also my request). I have had an

abominal CT done 3 years ago but with this one they want me there 2 hours

before and no solid food 6 hours prior and also to drink 2-4 glasses of

water within 12 hours of appt. ANyone know why?

Anyway TJ you cake care and be better soon and by the way .....you are far

from a fool!!!!

Betty

Get this guys---------- unbelieveable

>

> Most of you know- that I have VEDS- and that I live in chronic pain and

am on many medications, including methadone/morphine and a few others.......

Well today- I woke in such severe pain - even with this high medicine load

and I tried to ignore it, thinking - Oh its just a bad EDS day- well , it

didnt let up and I was beginning to shiver/shake etc........ which only

worsened my pain......... and I am- forced into a wheelchair today as I can

barely move.......... Pain is still pretty severe.

>

> I called my dr. but after hrs and he is off duty so they gave me a diff

dr that is on call that Has never met me.

>

> Get this--------- He asked, " What can I do for you? " I said,,,, Well

, I want advice on which way to go- should I go in to ER or just try

something more of what I have on hand here to see if something can help cut

down my pain level.......

>

> He asked again what I had- and I said " Ehlers Danlos Syndrome " - he

said

>

> " Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

>

> I corrected him then - stating that I have Chronic pain --- etc etc-----

he was like in shock that EDS could do such a thing, grrrrrrrrrrrrr- so he

just suggested upping the methadone for the weekend then contacting my dr on

Monday - and if none of that helped to go into the hospital because he

couldn't do anything over the phone.....

>

> He even rudely asked " Well - what do you thing or what do you WANT to

do this weekend for it...... " Geesh, I wish I had not called him-----so I

did take an extra methadone- cut my morphine in half and took half of

it...... ( capsule) so that was fun. took an extra xanax and quinine and ok

yes I drank some beer....... I couldnt stand the pain anymore------ and I'm

still hurting like *********.

>

> Well, my mother came down to be with me for a while, yesterday I had

felt almost human and was so happy that my meds were finally seeming to be

of a help....... then bam----- can't even move and have pain so severe-----

I was feeling I was at death's door.

>

> After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

>

> Such a fool........

>

> But I am angrier than hell, scuse my french----- that the doctor on the

phone said EDS causes no pain.......... I wanted to reach through the phone,

grab hiim and let him have a feel of how much I was hurting !!!!!!!!!! What

ignorance...............

>

> Thanks for letting me vent............

> Hugs- TJ

>

>

[Guest guest]

I would have felt the same way, TJ! No one deserves to be treated that way!

Love Lana 0 :-)

Get this guys---------- unbelieveable

Most of you know- that I have VEDS- and that I live in chronic pain and am

on many medications, including methadone/morphine and a few others.......

Well today- I woke in such severe pain - even with this high medicine load

and I tried to ignore it, thinking - Oh its just a bad EDS day- well , it

didnt let up and I was beginning to shiver/shake etc........ which only

worsened my pain......... and I am- forced into a wheelchair today as I can

barely move.......... Pain is still pretty severe.

I called my dr. but after hrs and he is off duty so they gave me a diff dr

that is on call that Has never met me.

Get this--------- He asked, " What can I do for you? " I said,,,, Well ,

I want advice on which way to go- should I go in to ER or just try something

more of what I have on hand here to see if something can help cut down my

pain level.......

He asked again what I had- and I said " Ehlers Danlos Syndrome " - he said

" Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

I corrected him then - stating that I have Chronic pain --- etc etc-----

he was like in shock that EDS could do such a thing, grrrrrrrrrrrrr- so he

just suggested upping the methadone for the weekend then contacting my dr on

Monday - and if none of that helped to go into the hospital because he

couldn't do anything over the phone.....

He even rudely asked " Well - what do you thing or what do you WANT to do

this weekend for it...... " Geesh, I wish I had not called him-----so I did

take an extra methadone- cut my morphine in half and took half of it...... (

capsule) so that was fun. took an extra xanax and quinine and ok yes I drank

some beer....... I couldnt stand the pain anymore------ and I'm still

hurting like *********.

Well, my mother came down to be with me for a while, yesterday I had felt

almost human and was so happy that my meds were finally seeming to be of a

help....... then bam----- can't even move and have pain so severe----- I was

feeling I was at death's door.

After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

Such a fool........

But I am angrier than hell, scuse my french----- that the doctor on the

phone said EDS causes no pain.......... I wanted to reach through the phone,

grab hiim and let him have a feel of how much I was hurting !!!!!!!!!! What

ignorance...............

Thanks for letting me vent............

Hugs- TJ

[Guest guest]

I would have felt the same way, TJ! No one deserves to be treated that way!

Love Lana 0 :-)

Get this guys---------- unbelieveable

Most of you know- that I have VEDS- and that I live in chronic pain and am

on many medications, including methadone/morphine and a few others.......

Well today- I woke in such severe pain - even with this high medicine load

and I tried to ignore it, thinking - Oh its just a bad EDS day- well , it

didnt let up and I was beginning to shiver/shake etc........ which only

worsened my pain......... and I am- forced into a wheelchair today as I can

barely move.......... Pain is still pretty severe.

I called my dr. but after hrs and he is off duty so they gave me a diff dr

that is on call that Has never met me.

Get this--------- He asked, " What can I do for you? " I said,,,, Well ,

I want advice on which way to go- should I go in to ER or just try something

more of what I have on hand here to see if something can help cut down my

pain level.......

He asked again what I had- and I said " Ehlers Danlos Syndrome " - he said

" Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

I corrected him then - stating that I have Chronic pain --- etc etc-----

he was like in shock that EDS could do such a thing, grrrrrrrrrrrrr- so he

just suggested upping the methadone for the weekend then contacting my dr on

Monday - and if none of that helped to go into the hospital because he

couldn't do anything over the phone.....

He even rudely asked " Well - what do you thing or what do you WANT to do

this weekend for it...... " Geesh, I wish I had not called him-----so I did

take an extra methadone- cut my morphine in half and took half of it...... (

capsule) so that was fun. took an extra xanax and quinine and ok yes I drank

some beer....... I couldnt stand the pain anymore------ and I'm still

hurting like *********.

Well, my mother came down to be with me for a while, yesterday I had felt

almost human and was so happy that my meds were finally seeming to be of a

help....... then bam----- can't even move and have pain so severe----- I was

feeling I was at death's door.

After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

Such a fool........

But I am angrier than hell, scuse my french----- that the doctor on the

phone said EDS causes no pain.......... I wanted to reach through the phone,

grab hiim and let him have a feel of how much I was hurting !!!!!!!!!! What

ignorance...............

Thanks for letting me vent............

Hugs- TJ

[Guest guest]

God love you! I have forgotten my am meds too and thought I was dying

later in the day! Don't kick yourself-it is easy to do! Seems so many docs

haven't a clue about the pain aspect!

{{{{{{{{{{{{{{feel better}}}}}}}}}}}}}

Sue J.

Get this guys---------- unbelieveable

>

> Most of you know- that I have VEDS- and that I live in chronic pain

and am on many medications, including methadone/morphine and a few

others....... Well today- I woke in such severe pain - even with this high

medicine load and I tried to ignore it, thinking - Oh its just a bad EDS

day- well , it didnt let up and I was beginning to shiver/shake etc........

which only worsened my pain......... and I am- forced into a wheelchair

today as I can barely move.......... Pain is still pretty severe.

>

> I called my dr. but after hrs and he is off duty so they gave me a

diff dr that is on call that Has never met me.

>

> Get this--------- He asked, " What can I do for you? " I said,,,,

Well , I want advice on which way to go- should I go in to ER or just try

something more of what I have on hand here to see if something can help cut

down my pain level.......

>

> He asked again what I had- and I said " Ehlers Danlos Syndrome " - he

said

>

> " Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

>

> I corrected him then - stating that I have Chronic pain --- etc

etc----- he was like in shock that EDS could do such a thing,

grrrrrrrrrrrrr- so he just suggested upping the methadone for the weekend

then contacting my dr on Monday - and if none of that helped to go into the

hospital because he couldn't do anything over the phone.....

>

> He even rudely asked " Well - what do you thing or what do you WANT to

do this weekend for it...... " Geesh, I wish I had not called him-----so I

did take an extra methadone- cut my morphine in half and took half of

it...... ( capsule) so that was fun. took an extra xanax and quinine and ok

yes I drank some beer....... I couldnt stand the pain anymore------ and I'm

still hurting like *********.

>

> Well, my mother came down to be with me for a while, yesterday I had

felt almost human and was so happy that my meds were finally seeming to be

of a help....... then bam----- can't even move and have pain so severe-----

I was feeling I was at death's door.

>

> After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

>

> Such a fool........

>

> But I am angrier than hell, scuse my french----- that the doctor on

the phone said EDS causes no pain.......... I wanted to reach through the

phone, grab hiim and let him have a feel of how much I was hurting

!!!!!!!!!! What ignorance...............

>

> Thanks for letting me vent............

> Hugs- TJ

>

>

[Guest guest]

God love you! I have forgotten my am meds too and thought I was dying

later in the day! Don't kick yourself-it is easy to do! Seems so many docs

haven't a clue about the pain aspect!

{{{{{{{{{{{{{{feel better}}}}}}}}}}}}}

Sue J.

Get this guys---------- unbelieveable

>

> Most of you know- that I have VEDS- and that I live in chronic pain

and am on many medications, including methadone/morphine and a few

others....... Well today- I woke in such severe pain - even with this high

medicine load and I tried to ignore it, thinking - Oh its just a bad EDS

day- well , it didnt let up and I was beginning to shiver/shake etc........

which only worsened my pain......... and I am- forced into a wheelchair

today as I can barely move.......... Pain is still pretty severe.

>

> I called my dr. but after hrs and he is off duty so they gave me a

diff dr that is on call that Has never met me.

>

> Get this--------- He asked, " What can I do for you? " I said,,,,

Well , I want advice on which way to go- should I go in to ER or just try

something more of what I have on hand here to see if something can help cut

down my pain level.......

>

> He asked again what I had- and I said " Ehlers Danlos Syndrome " - he

said

>

> " Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

>

> I corrected him then - stating that I have Chronic pain --- etc

etc----- he was like in shock that EDS could do such a thing,

grrrrrrrrrrrrr- so he just suggested upping the methadone for the weekend

then contacting my dr on Monday - and if none of that helped to go into the

hospital because he couldn't do anything over the phone.....

>

> He even rudely asked " Well - what do you thing or what do you WANT to

do this weekend for it...... " Geesh, I wish I had not called him-----so I

did take an extra methadone- cut my morphine in half and took half of

it...... ( capsule) so that was fun. took an extra xanax and quinine and ok

yes I drank some beer....... I couldnt stand the pain anymore------ and I'm

still hurting like *********.

>

> Well, my mother came down to be with me for a while, yesterday I had

felt almost human and was so happy that my meds were finally seeming to be

of a help....... then bam----- can't even move and have pain so severe-----

I was feeling I was at death's door.

>

> After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

>

> Such a fool........

>

> But I am angrier than hell, scuse my french----- that the doctor on

the phone said EDS causes no pain.......... I wanted to reach through the

phone, grab hiim and let him have a feel of how much I was hurting

!!!!!!!!!! What ignorance...............

>

> Thanks for letting me vent............

> Hugs- TJ

>

>

[Guest guest]

Thanks Sue-

I had refilled the seven day container- and was thinking about which have to

be renewed when and I guess I figured I took em..... who knows...... all I know

is it was a horrible - horrible day- and the atmosphere around me didnt help

much- My 11 yr old went on a brat binge........ ( he apologized later ) but wow

to know your mother is sitting there, actual tears- and thinking about ER and to

be as mouthy as he was being was horrible........ I know he's going through a

lot- divorce/ his dad remarried ( fast ! )- and to have mom not be able to do

all she used to but still no excuse for that type of treatment....... and his

dad removed him from counseling........ what a world........

So they are refilled now- and I do think I am going to take an email sent thru

here's advice and take what helps me and tell the dr what I need to work......

I'm tired of hurting that bad and still being on meds........ doesnt seem right

with today's technology.

Definite on the dr not understanding but what if I were assigned his patient

had it been an emergency deal- how scarey - that this dr is going around without

proper knowledge...... I am making sure my dr makes sure that dr see's that CD

that I got to hand out- sounds like he definitely needs it.

Am feeling some better today- but not where I should be- and its my own fault

for making that mistake........ would kick self but legs hurt too much to do

that............ LOL..........

Even people without VEDS , I mean other types of EDS hurt am I wrong? He

seemed so shocked when I said- well- I belong to a few EDS groups and most are

taking pain medication........in high doses even........

I told mom when I hung up- that I almost hung up on him before he said I hope

you feel better soon.....

Hugs- And hope you are as well as can be-

TJ

God love you! I have forgotten my am meds too and thought I was dying

later in the day! Don't kick yourself-it is easy to do! Seems so many docs

haven't a clue about the pain aspect!

{{{{{{{{{{{{{{feel better}}}}}}}}}}}}}

Sue J.

Get this guys---------- unbelieveable

>

> Most of you know- that I have VEDS- and that I live in chronic pain

and am on many medications, including methadone/morphine and a few

others....... Well today- I woke in such severe pain - even with this high

medicine load and I tried to ignore it, thinking - Oh its just a bad EDS

day- well , it didnt let up and I was beginning to shiver/shake etc........

which only worsened my pain......... and I am- forced into a wheelchair

today as I can barely move.......... Pain is still pretty severe.

>

> I called my dr. but after hrs and he is off duty so they gave me a

diff dr that is on call that Has never met me.

>

> Get this--------- He asked, " What can I do for you? " I said,,,,

Well , I want advice on which way to go- should I go in to ER or just try

something more of what I have on hand here to see if something can help cut

down my pain level.......

>

> He asked again what I had- and I said " Ehlers Danlos Syndrome " - he

said

>

> " Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

>

> I corrected him then - stating that I have Chronic pain --- etc

etc----- he was like in shock that EDS could do such a thing,

grrrrrrrrrrrrr- so he just suggested upping the methadone for the weekend

then contacting my dr on Monday - and if none of that helped to go into the

hospital because he couldn't do anything over the phone.....

>

> He even rudely asked " Well - what do you thing or what do you WANT to

do this weekend for it...... " Geesh, I wish I had not called him-----so I

did take an extra methadone- cut my morphine in half and took half of

it...... ( capsule) so that was fun. took an extra xanax and quinine and ok

yes I drank some beer....... I couldnt stand the pain anymore------ and I'm

still hurting like *********.

>

> Well, my mother came down to be with me for a while, yesterday I had

felt almost human and was so happy that my meds were finally seeming to be

of a help....... then bam----- can't even move and have pain so severe-----

I was feeling I was at death's door.

>

> After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

>

> Such a fool........

>

> But I am angrier than hell, scuse my french----- that the doctor on

the phone said EDS causes no pain.......... I wanted to reach through the

phone, grab hiim and let him have a feel of how much I was hurting

!!!!!!!!!! What ignorance...............

>

> Thanks for letting me vent............

> Hugs- TJ

>

>

[Guest guest]

Thanks Betty- hugssssss

As for the drinking 2-4 glasses of water before the abdominal CT- that one's

beyond me- I had this test ran recently - well within 1 yr and they didn't have

the water regulation then....... but I was already in hospital so not sure if

that makes a big diff or not.....

I think its great you are requesting all these tests- better to be safe and

knowledgeable than to be sorry...... How are things coming along with getting

your son tested..... You have mentioned that he will be tested----- how and when

will this all begin......... Am praying he doesnt have it as well.......

And thanks for saying Im not a fool but when you hurt that bad ---- I mean , I

have to hurt realllllly bad to even mention the possibility of going to the

hospital----- I hate it there------ not that it isn't a nice place- I just

prefer home and my own stuff....... and being around my own family......... but

it takes a heck of a lot of misery to get me there........ ( finding morning

dose still there was really a shocker- they still aren't kicked in as should be-

am so off track----- but hopefully it won't take too long to get back on track

as it was only a day that seemed like a month) ---- am hoping with enough rest

and catching back up today and throwing in a few extra this or that- I'll be on

the normal pain range again instead of the full blown knock ya in the dirt pain

range ..........

You take care of yourself too lady and please be very careful on your trip

.......

More hugs--------- TJ

Get this guys---------- unbelieveable

>

> Most of you know- that I have VEDS- and that I live in chronic pain and

am on many medications, including methadone/morphine and a few others.......

Well today- I woke in such severe pain - even with this high medicine load

and I tried to ignore it, thinking - Oh its just a bad EDS day- well , it

didnt let up and I was beginning to shiver/shake etc........ which only

worsened my pain......... and I am- forced into a wheelchair today as I can

barely move.......... Pain is still pretty severe.

>

> I called my dr. but after hrs and he is off duty so they gave me a diff

dr that is on call that Has never met me.

>

> Get this--------- He asked, " What can I do for you? " I said,,,, Well

, I want advice on which way to go- should I go in to ER or just try

something more of what I have on hand here to see if something can help cut

down my pain level.......

>

> He asked again what I had- and I said " Ehlers Danlos Syndrome " - he

said

>

> " Ehlers doesn't cause pain----- it just makes your joints

flexible........ " I said , Excuse me ? He said, thats correct maam------

it doesnt cause pain.

>

> I corrected him then - stating that I have Chronic pain --- etc etc-----

he was like in shock that EDS could do such a thing, grrrrrrrrrrrrr- so he

just suggested upping the methadone for the weekend then contacting my dr on

Monday - and if none of that helped to go into the hospital because he

couldn't do anything over the phone.....

>

> He even rudely asked " Well - what do you thing or what do you WANT to

do this weekend for it...... " Geesh, I wish I had not called him-----so I

did take an extra methadone- cut my morphine in half and took half of

it...... ( capsule) so that was fun. took an extra xanax and quinine and ok

yes I drank some beer....... I couldnt stand the pain anymore------ and I'm

still hurting like *********.

>

> Well, my mother came down to be with me for a while, yesterday I had

felt almost human and was so happy that my meds were finally seeming to be

of a help....... then bam----- can't even move and have pain so severe-----

I was feeling I was at death's door.

>

> After mom left- I came in here ( in wheelchair to my office )- and for

some reason I move my medicine holder and it sounded like there were more

meds in it than should be......... so I peeked......... Guess what........

this fool ( ME ) had morning dose ( the most important one- and the most

full one ) still full........... in other words- I forgot morningn

dose....... no wonder I was so miserable................ so I just took

those now........ I feel like a fool...........

>

> Such a fool........

>

> But I am angrier than hell, scuse my french----- that the doctor on the

phone said EDS causes no pain.......... I wanted to reach through the phone,

grab hiim and let him have a feel of how much I was hurting !!!!!!!!!! What

ignorance...............

>

> Thanks for letting me vent............

> Hugs- TJ

>

>

[Guest guest]

You got that right Lana- thanks and hugs- will definitely request his presence

be removed if he is ever shown my hospital room when Im in.

Hugs and hope you are feeling as well as can be-

Love TJ

I would have felt the same way, TJ! No one deserves to be treated that way!

Love Lana 0 :-)

[Guest guest]

Hey -

Just be glad you didn't think your forgot your meds, then took them again! I've

done that, but luckly with just very small doses, so I didn't get any major

problems, like you could have gotten if you had taken 2 doses!

Sorry you suffered so long though. Maybe, this doctor will take some time to

find out a little about EDS now. We can only hope. !

Maybe he'll go in on Monday and talk to your doctor about it. If he's any kind

of a good doctor, he will.

So, are you feeling better now? I bet that beer tasted good! I've had some

over the last few days, cause I'm pretty much off my meds now. Just 2.5 mg of

meth a day now. It's been sunny and warm here, and nothing tastes so good as a

cold beer on a warm evening! hehe. I hadn't had any in so long cause of my

meds.

I would have gotten mad too. It's so frustrating. Like 2 steps foward and 3

back.

Something has to be done about the ignorance in the medical field of this

horrible disorder that so many are suffering with every day.

We need Oprah!

Hugs,

[Guest guest]

In a message dated 4/30/04 9:50:40 PM Eastern Daylight Time,

moondancer@... writes:

<< that the doctor on the phone said EDS causes no pain.......... I wanted to

reach through the phone, grab hiim and let him have a feel of how much I was

hurting !!!!!!!!!! What ignorance............... >>

This is why we all need to actively educate all doctors. Next time get his

name and send him some information about EDS/VEDS.....and the good article on

EDS and pain. In fact if you want, send along his name and address and I will

send along some info. I have a professional letter that I use for doctors and

other healthcare professionals, and I include articles that are geared

towards the physicians specialty as well as good general information. This

doctor

is just uninformed....and this needs to change in order for you or others with

EDS to get proper and appropriate care. This situation may arise again when

your doctor is off duty. In my letter I always include information about

scheduling a professional presentation on EDS, either for their office or local

hospital. When doctors can see a variety of individuals with EDS and hear their

stories, it is much easier for them to understand this disorder. Let me know

if you want me to forward any information to this doctor.

Hugs,

Sue

[Guest guest]

Ah TJ --

I am so sorry you had to deal with such an idiot - EDS doesn't cause pain??????

--- what planet is this guy from -- certainly not this one!!!!! I do hope he

gets educated so he does not treat other people this way.

Take care and I hope you are feeling better after getting your meds straightened

out (I've forgotten to take mine, too -- although mine are heart meds, not pain

meds).

Love, Patti

Get this guys---------- unbelieveable

[Guest guest]

Ah TJ --

I am so sorry you had to deal with such an idiot - EDS doesn't cause pain??????

--- what planet is this guy from -- certainly not this one!!!!! I do hope he

gets educated so he does not treat other people this way.

Take care and I hope you are feeling better after getting your meds straightened

out (I've forgotten to take mine, too -- although mine are heart meds, not pain

meds).

Love, Patti

Get this guys---------- unbelieveable

[Guest guest]

Yes I do please- would love to have a couple sent ----- even one to my own dr so

that he can be sure to inform the others--- it can't hurt either to have on

hand----- correct? Would really appreciate one for the upcoming hearing as well

if you think it may help...... She still asks for information ( my lawyer )

geared toward EDS for the Judge etc.........

Am not sure though if the letter would make my doctor think I think he's a dud

though? Because - even though he is not totally informed- I feel he is at least

trying...... so wouldn't want him to receive it with the idea that I feel he is

not doing his job?

Let me know what you think?

Hugssssssssssssss, TJ

Re: Get this guys---------- unbelieveable

In a message dated 4/30/04 9:50:40 PM Eastern Daylight Time,

moondancer@... writes:

<< that the doctor on the phone said EDS causes no pain.......... I wanted to

reach through the phone, grab hiim and let him have a feel of how much I was

hurting !!!!!!!!!! What ignorance............... >>

This is why we all need to actively educate all doctors. Next time get his

name and send him some information about EDS/VEDS.....and the good article on

EDS and pain. In fact if you want, send along his name and address and I will

send along some info. I have a professional letter that I use for doctors and

other healthcare professionals, and I include articles that are geared

towards the physicians specialty as well as good general information. This

doctor

is just uninformed....and this needs to change in order for you or others with

EDS to get proper and appropriate care. This situation may arise again when

your doctor is off duty. In my letter I always include information about

scheduling a professional presentation on EDS, either for their office or

local

hospital. When doctors can see a variety of individuals with EDS and hear

their

stories, it is much easier for them to understand this disorder. Let me know

if you want me to forward any information to this doctor.

Hugs,

Sue

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca