<Long again..to Byrd>

[Guest guest]

Hi again,

Hey again with the relating...I too could do many many things which

....in actual fact...I can still do ...*IF* I want to hurt for their sake

and " pay " for doing so for many days...I haven't started any physio and/or

exercises with this particular O.T. because he said lets take one thing at

a time...and do the orthotics first then once I have adjusted to those we

could start anew and slowly into the other 'program " ...in the meantime

however...the referral that had been put into the Arthritis Clinic had

come through and I just was there last week...mostly am interested in the

aquatherapy program...but we had discussed posture and " land "

exercises...that was when <after> just having an ROM with very little

resistance aspects to it I had my right leg/hip act up badly... & this is

what I was posting about last week...so am going to go there and just

start with the one thing (being the aqua classes...so as to not overdo/

overwhelm...and also that could confuse why/if there are any problems....

i agree with Lana to persist to your G.P. about the " real " experience

of pain management...be well informed and well armed with material...I

took him a binder (with the mosst pertinent postings) as well as

medical articles (which related) for him to take home...I figure

whether he was to read them or not...he would ahve a hard time

justifying not responding to my needs ...if he wasn't willing to do a

little research/reading at the very least...So if your Docotr doesn't get

and validate it by responding with trying an Rx or wanting more info or

whatever...then time to move onto a new G.P.

My G.P. really (like most) doesn't know a hell of a lot, but ...he does

follow my lead...I am the one learning, living with and the one persuing

knowledge on the subject...so I figure that I am to be " listened to "

....Even when he may not agree with my line of interest...ie: when I was

looking into Prolotherapy...we discuseed the subject and I wanted him to

refer me to at least meet this (former Anesthesiologist/Pain management

practioner.. to check it out thoroughly....I haven't felt confident

enough about this procedure yet to persue it ...but he trusts my

judgement enough to understand my need to find out...Also I had " put

off " for a very long time even trying the NSAIDS...which I have now but

find " minimally effective " ...so went back and told him I want to go to the

next level and at least have a stronger drug available...He knows I don't

do this lightly...and may find I don't like/tolerate andor may not even

use them much...but they are now there for me ...He prescribed me Dilauded

and when I do try them I have to monitor my reactions as I have had a

strong reaction/sensitivity to narcotics post-op...so we'll see....

I hope this encourages you to fel a little more empowered when next

encountering your Doctors...and *you* decide if it is worth whichever

route. I think that we really need to feel that we have our " primary " med

practioner " with us " ...that in itaelf goes a long way when struggling such

a poorly understood and usually mis or undiagnosed condition...(as EDS)

Hey I would have <likely> *never!* known anything if I hadn't pursued this

myself...and now thanks to CEDA...and this list ...have felt better...if

not sooo much physically then much relief in the " validation and

understanding of not being so alone in this experience....

Whew!....Geeesh...well time to get off the pulpit for one night! eh?

<grin>

Well Byrd...wishing you all the best...post me if ya want or need...

hugs

cheri