Re: Drs are so grrrrrrrrr at times/TJ

[Guest guest]

Even though I stated I won't be going back there- I did indeed call him last

night and due to be after hours - his phone answering gal paged him and he

basically stated that he could do nothing until morn and hoped I would wait it

out- not needing to go to ER and just go back on the Avinza ( Morphine ) today.

He seems that he does want to learn- told him I will print out some info on him.

So- maybe once he reads these it will help to shine more light on it for him.

Am sorry I seemed so upset but I just sometimes feel like Im going thru More

heck than getting proper help.

The doctors at ER last night though are very uninformed about EDS- they do not

understand Chronic pain. So they gave the shot after a 4 hr wait and sent me

home- but doctr there said, sure hope you get off these narcotics- they aren't

good for aanyone . But you are right- if they could feel it daily - they would

think differently.

Hugs- TJ

Wont be going back- let alone talk to him........ I feel like a total

fool....... Vicodin puts me in the hospital so no worries there- no one could

pay me enough to go on them again.......

~~~~~~~~

Oh TJ, I'm sooo sorry to hear that the MD is such a fool!!! Sounds like he

just doesn't want to learn or " get it "

Keep your meds for the future. They won't go " bad " , even after the expire

date.

You can vent here any time!!!

And no, you're NOT faking it, making it up, or living a lie!!! You have pain,

and all the problems associated with it... If people could just live in our

bodies for a day...they'd GET IT!!

Bonnie

[Guest guest]

Even though I stated I won't be going back there- I did indeed call him last

night and due to be after hours - his phone answering gal paged him and he

basically stated that he could do nothing until morn and hoped I would wait it

out- not needing to go to ER and just go back on the Avinza ( Morphine ) today.

He seems that he does want to learn- told him I will print out some info on him.

So- maybe once he reads these it will help to shine more light on it for him.

Am sorry I seemed so upset but I just sometimes feel like Im going thru More

heck than getting proper help.

The doctors at ER last night though are very uninformed about EDS- they do not

understand Chronic pain. So they gave the shot after a 4 hr wait and sent me

home- but doctr there said, sure hope you get off these narcotics- they aren't

good for aanyone . But you are right- if they could feel it daily - they would

think differently.

Hugs- TJ

Wont be going back- let alone talk to him........ I feel like a total

fool....... Vicodin puts me in the hospital so no worries there- no one could

pay me enough to go on them again.......

~~~~~~~~

Oh TJ, I'm sooo sorry to hear that the MD is such a fool!!! Sounds like he

just doesn't want to learn or " get it "

Keep your meds for the future. They won't go " bad " , even after the expire

date.

You can vent here any time!!!

And no, you're NOT faking it, making it up, or living a lie!!! You have pain,

and all the problems associated with it... If people could just live in our

bodies for a day...they'd GET IT!!

Bonnie

[Guest guest]

Methadone definitely is Not a light weight drug- you got that right- but

Vicodin is something I can't take and havent in many moons. I was on 90 mgs of

avinza- he decided to just try methadone and lortab/10 , and the 10 mgs of

methadone- were written as 1 to 2 tablets 3 times a day..... with the lortab/10

Acetaminophen/hydrocodon 500/10 - 1 tablet four times a day as needed for pain.

I did try the methadone- but ended up in hospital and I think it was from the

Methadone, not sure- they gave me a shot of morphine and something for

stomach......and this morning my Dr put me back on avinza but also wants me to

try to get on the Methadone even though its making me sick.

First week- morphine 90 mgs and 1 methadone- 2nd week,, morphine and 2

methadone,,,, 3rd week - morphine and 3 methadone and so on........ but that 3rd

week , to me anyhow sounds a bit steep? I mean isnt that a bit much?

Boy the trip to ER was something else- I can't believe, I lived there almost a

year and still no one understands Ehlers and Chronic pain........... they all

kept saying it was wrong to be on any narcotic for 2 yrs or more and that I need

to get down to no meds for it......... and where is your pain anyhow they'd

say......

As for those papers- he did indeed already do them........ and I am worried

about how he filled them out- mercy he has me half dead on them from the way I

read them..... I made a copy and will let you see what he wrote........ But I

knew I wouldnt see him again before the hearing and had to have them filled out

and as nutty as his secretary has been , I was worried to leave it in their

hands so he did it with me right there in the room.

I really need to get those cd's or whatever you mentioned to me before and make

sure my doctor and that hospital gets one and then make sure they

listen/watch/read - whatever them........ I am beginning to feel like I am

nothing but a liar/faker , seriously........... because they all seem to act

like I dont know what I'm talking about.

Hugs, TJ

P.S. Sue- I did e-mail you b4 I went - stating that you had much on your plate

and that I was just going to take them in as they were? You didn't get the

e-mail? Thank you much though for all you tried to do.......... I will never

put out a friend like that again and totally apologize for asking for your

help......... especially knowing you too feel like *crap* most of the

time....... Did you get my sons autopsy scans then?

TJ and Everyone,

I have been on Morphine and it did not work at all. I was then put on a

" lesser " med, and it works much better. Methadone is no light weight drug and

with Vicodin for breakthrough........if it works better. Give it a try TJ, at

least the methadone. And then call the doc back and tell him whether the

Vicodin bothers your stomach or not. Sometimes just a brand name switch can

make a

difference. How are you surviving if your not taking these meds......you

could go through some serious withdrawls. I hope you are still taking

something.

Do you need me to help fill out those papers if he did them already?

Hugs,

Sue

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

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[Guest guest]

In a message dated 3/20/04 12:00:56 AM Eastern Standard Time,

concreteangel@... writes:

<< and where is your pain anyhow they'd say...... >>

You should have told them VEDS is a lifethreatening disorder and they don't

worry about medicating cancer patients do they? Ask them how long they think

you will live? Tell them your son passed away from it! This really makes me

mad. For those of us with VEDs, we really do not know how long we have left.

Are we just supposed to live our lives miserable, how ever long that may be?

go here and copy this to take with you to the ER and any docs you do see:

http://www.geneclinics.com/servlet/access?db=geneclinics&site=gt&id=8888891&ke

y=seIwswVOIlxXS&gry=&fcn=y&fw=EJCM&filename=/profiles/eds4/index.html

This an article that is on VEDs and was published in a genetics journal. And

yes, you should get the VEDs CD, but until you do have this article with you.

I sent you who to email for the CD in a previous email, OK?

I didn't ever get a copy of your son's autopsy...don't worry about it, unless

you really want to send it.

Oh, and if your doctor has you half dead....be happy this is how you need to

appear in order to get SSI, LOL!!!!! I know it is difficult to see yourself

described in this way, but you are seriously ill and that is why you need SSI.

hang in there.

Hugs,

Sue