--- In rsdsupport1@yahoogroups.com, Anna Daley <atrag2@...> wrote:
>
> Ladies,
> Brooke, I agree w just about all u said. I have been put thru hell for
the last 23 months because I want a scooter and the insurance wants me
to have an electric wheelchair. Why, because it is more expensive, they
do not care that the apt. I live in, it will not fit thru the doorways
and around xharp turns. Then I find out on Fri. they approved me for the
wheelchair anyway 2 weeks ago and NOBODY informed me. These dr.'s are
all morons anymore, I don't even call them dr.'s, I tell them they ar e
maintainance people-LOL and do they get pissed. And the neurontin, oh
God, please don't take that one, I was a total zombie. As I told you my
main problem is I am allergic to 99% of the drugs they give me, thsat is
why it is so hard for them to find something to control my pain and the
rsd. 2 mths. ago O tried Soma, well I ended up fainting, having body
convulsions, coming too and was totally blind, all an allergic reaction!
I have to get such tiny increases in my pump that
> after 4 mths. I am still 1/4 of the asmount I should be getting
because of they give me too much I am like a junkie, I nod off, my face
has actually fell into my plate as I ate dinner-no good. My pain dr. who
is supposed to be an ex[pert on rsd did not even know that when it comes
on a person quickly and severly over 85% of people lose their teeth, and
yes I have lost just about all, when I told him he was like where did
you read that one! I gave him the Harverd Journal of Medicine link and
there it all was, guess I taight him something! Now I MAKE them listen
to me, they have no clue what it is like for over 4 years to live in a
10+++ pain scale, to be housebound for almost 3 years, to be
incontinent, to not have a sex life for 4 years, then they have the
nerve to ask why u r depressed! Gee I just can't inagine. But no matter
how bad a day it was I still thank the Lord for the gift of another day,
because that is what it is, a gift, and I try to find some beauty
> somewhere every day. Then I realize I really don't have it that bad,
my son, well my g-daughter is terminal, is 6 yrs. old and is like an
infant, and she will not be here much longer, so to say I live in hell,
well it cannot compare the hell they live in 24/7.
> So both of you take care, and J I hope that hubbie of yours is
starting to be more uinderstanding.
> Anna-group 2
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> brook_s2001 brook_s2001@... wrote:
> My dear Shala,,, So sorry that I have been slow about getting in my
> emails too see this post. My dear,,, you have too deal with insurance
> companys n drs on your terms. Letting them know it is your body n your
> pain. Sometimes you have too put them people on the spot. In my
> dealings, when they were wanting to say NO with n to the dr. I stopped
> them asking them,, what would you do with this kind of pain in your
> body? What n how would you deal with this stuff n with ones that have
no
> understanding with what is going on in this body of mine????? This
> helped in getting my drs n insurance company working with me. If they
> are all on your side working for YOU and YOU alone, this will make
> them deal alot differently!!!!!!!! In my situation,, I added the fact
> to this,,, with,,, If 3 drs were dealing with this all,,,, 2 of them
> would have committed suicide long before this meeting I am feeling
> mighty retarded that I have let this go on like this!!!!! We all
> have to do what we know is rite. We cannot loose focus on our future n
> what all it can n does hold for us!!!! At least we are knowing that
> there are drs behind the scene working on finding answers for us!!!!
> There are no doubts of that for us!!!!! Know that we do care. Maybe
> slow in answering,,, we all have issues that we are dealing with. But
> we are here and we do care. Just alot for any of too deal with... The
> pain is awhole lot too deal with cause of it taking so much from
> us!!!!!! Now,,, please talk with the dr about the Neurotin that rotten
> drugg with take n do alot more than u want it too... Especially in
> adding to pain. The medical bible tells the drs about adding too pain
n
> robbing us of our teeth n alot more!!!!!!!!!! Non of them phsyco
druggs
> we need ,,,, we sure do not need the kind of addiction those put on us
> in no way!!!!!!!! Them kind of drugs we certainly do not need as they
> add more n more negative thots into our brains that we certainly do
not
> need. The physical problems that they add n create in us we most
> certainl do not need. Hope that this helps.. Huggzzz Annie
> --- In rsdsupport1@yahoogroups.com, jeanette polk
> turkeylips_sammon@ wrote:
> >
> > Shala, I too read the posts and sometimes if I feel it is important,
> and I do think your pain is worth a few words. I can relate to the
> insurance deal as they have refused the SCS because they say it is
not,
> in their minds, a suitable treatment. I too have been frustrated and
and
> even with the meds. the pain is still an issue. I feel bad most of the
> time, I don't go anywhere with friends or family every once in a while
I
> will go to a family gathering in which they can see the pain in my
face.
> You can't hide from it and when you try to explain it, nobody has
heard
> of it. With all this you can't let the monster RSD win, there may be
> someone out there with the same feelings whom you may give hope. Even
if
> you take one day at a time or one minute at a time don't give up.
There
> are a lot of us out here who have the same thoughts from time to time
> but at the end of the day when we are so exhausted from the pain,
> hopefully the dreams of the night will get you
> > through the night and give you the strength to keep the hope.
Jeanette
> >
> >
> >
> > ----- Original Message ----
> > From: Winter winterwhitefox@
> > To: rsdsupport1@yahoogroups.com
> > Sent: Friday, June 6, 2008 10:34:15 PM
> > Subject: [RSDSupport1] i read
> >
> >
> > i sit quietly and read all of the stories and weep because i feel
like
> > i am reading about my own life and pain and it is so scarey. The
pain
> > is non relenting and eats away at me and the pain meds keep it at an
> > 11 on a scale from 1 to 10...It's scarey knowing that some insurance
> > companies dont agree with what the doctors are doing and it has
taken
> > me a year to get an appoitment with dr. schwartzman. What happens if
> > the insurance says no to what he wants to do, then what??suicide
> > perhaps? would that make them listen more or think more. This RSD is
> > the worst pain ive ever had in my life that never quits.
> > Perhaps you could ask about the lollipops they have for breakthru
> > pain..see how it works. i myself am on 100 micrograms of duragesic
> > every 3 days, depakote 2 times a day and nuerotin 2 times a day and
> > ambien to sleep and lots and lots of vitamins.... .i wish u all well
> > and just because i dont say much doesnt mean im not watching and
> > listening and learning and praying for you all......Shala
> >
> >
> >
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> Anna Daley
> `Unique Jewelry for the woman who dares to be different'
> http://www.Picturetrail.com/Beadfuldelights
> http:/www.Homegrownmarket.com/annmarie
> and for the younger scene:
> http://www.Flickr.com/photos/atrag
>
>
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