Re: please help, I am so scared

From: Bernie and Beverly Doucette (bnb@cybrzn.com)
Thu Dec 9 13:01:01 1999


RE: please help, I am so scaredI 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 To: Multiple recipients of list ADHESIONS 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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