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

[Guest guest]

Tj

Thanks for the hugs....as far as our son being tested ---the genetecist says

to go through the family doc and when we do that the family doc isn't sure

what to get re: type of tube, what test urrrrrrrrgh - what is so damn

difficult about this syndrome that everyone seems to never kbow whats going

on. My son is fine with being tested and of course he knows about me as

well --he took it very well - he's so logical and down to earth. He's been

away for 4 days on a school band trip and man is it ever quiet here. Thank

God I have been working. plays the clarinet and the tenor sax. Was it

Kenny that played sax?? loves it. Anyway better run as dinner is

ready. Please take care of yourself and yes I will be careful on the trip

Hope to have a reasonably good time ----you know what I mean.

Talk to you later.

Hugs

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

> >

> >