Re: please help, I am so scared

From: LNewman@milbank.com
Thu Dec 9 15:24:46 1999


Already have and she has written back. I'll send up our chats tomorrow because I have some stuff I have to get out before 5:30.

> -----Original Message-----
> From: Bernie and Beverly Doucette [SMTP:bnb@cybrzn.com]
> Sent: Thursday, December 09, 1999 3:02 PM
> To: Multiple recipients of list ADHESIONS
> Subject: Re: please help, I am so scared
>
> I too wrote to Alexandra Alger, and the National Institute of Health, a
> few Congressmen from our State, Hillary Clinton and Tipper Gore...and I
> intend to write to Stone Phillip of the news talk show, " Weekend Edition
> "...and if more ARD sufferers write to Alger and impress upon him ARD and
> the sufferring that exists with this sidorder, wh may soon see an article
> specifically about adhesions...and that would be a major breakthrough for
> the IAS and all of us! Please think about dropping a line to Alger c/o
> Forbes magazine. Just clock on the website Helen sent regarding that
> article and in the left column click on letters to the magazine...that is
> all it takes.
>

>> ----- Original Message -----
> From: LNewman@milbank.com <mailto:LNewman@milbank.com>
> To: Multiple recipients of list ADHESIONS
> <mailto:adhesions@talk.obgyn.net>
> Sent: Thursday, December 09, 1999 12:14 PM
> Subject: RE: please help, I am so scared
>
> Sue Ann, no, Dr. R's office did not recommend anyone to me;
> actually, I saw his partner, Dr. Vidali (I took the train to NY) and he is
> of the impression that surgery may not be an option for me. It cost me
> $350 for that opinion (see what I mean about the cost?). Since you will
> need to contact the clinical trials nurse, can you ask her if they still
> need volunteers for any new pain management studies? You may give her my
> e-mail address. At this point, I am at a crossroad with my pain and I
> have to decide what I am going to do with the rest of my life. I am with
> a wonderful group of drs. but they seem as though they have no clue as to
> what more they can do for me and watching their faces just makes me more
> depressed than I already am, then, they want to know what is wrong. One
> of my drs., as tender as he is, said to me when I started crying in his
> office on my last visit, "It is the holiday season that is making you more
> depressed than I am used to seeing in you." As much as I like him, I
> wanted to punch him in the mouth for saying such a patronizing thing!!!
> I am crying because I'M IN PAIN, and I cannot take it anymore!!! The
> holidays had absolutely nothing to do with it; he just needed someplace to
> throw my feelings in because he can't handle the truth. Now he wants to
> try a procedure called "hypogastric block" (sp?) that is supposed to
> (hopefully) ease the pain at least in the pelvic area. I went on the Net
> to find info on it and couldn't scare up a thing. He gave me a sheet of
> paper (about 3/4 of the way down) on it but it was just not enough info
> for me to be sure I am doing the right thing. I am so tired of having to
> endure great pain for a few hours (if lucky) of relief. I am going
> through with it though, because I have no other options left. I am
> already on Morphine (an implanted pump) and I take Neurotin and Elavil but
> they are like taking aspririn for a migrane. Sorry to ramble on like
> that; it just helped to vent and I am so glad to have you to talk to.
>
> By the way, I just wrote to Alexandra Alger and I will let you know
> what her response will be. I will also attach the letter I send to her.
>
> -----Original Message-----
> From: Sue Ann Murray [SMTP:murraysa@penn.com]
> Sent: Thursday, December 09, 1999 2:12 AM
> To: Multiple recipients of list ADHESIONS
> Subject: Re: please help, I am so scared
>
> >Sue Ann, did Intergel work for you? I had wanted to see
> Dr. Reich (I have
> >suffered since 1977) but he was too expensive for me. Do you
> think your
> >doctor could recommend someone in the Washington D.C./Metro area?
> >
>
> Well, the doctor who did the surgery is convinced it worked
> very well. But
> the follow-up surgery was only two months after the first one, so
> while
> little had reformed then, who's to say what it's like now? I can
> say that I
> haven't had the same problems that I guessed were adhesion/endo
> related
> since then. I do still have some pain, but it is mangeable and I
> have too
> many other health problems to always know what's causing what pain
> in any
> case.
>
> I'm guessing Dr. Reich's office didn't have anyone to
> recommend? I can ask.
> I need to e-mail the clinical trials nurse about something anyway,
> so I'll
> try to remember to ask her since she sees the doctor all the time.
>
> Sue Ann
>
> <http://www.adhesions.org/forums/listcmds.htm>
>
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