Re: Saw the surgeon today regarding adhesions-Chris

From: Ginny King (gking@myrick.com)
Thu Sep 2 19:08:46 1999


Hi Chris.

I do understand and sypathize with you on your frustrating experience. I find if I talk to the doctors with logic and control they don't understand or believe the pain, yet when I get frustrated and emotional they are so quick to diagnose depression! You can't win. I spoke with my GI today who had told me to call her after two weeks and let her know how I was doing. Well I called her today and let her know that some of the symtoms are better, but the pain is still just as intense and that the surgeon wanted to get with her to discuss sending me to a pain clinic. She first said, "Oh, sounds like you are still having problems with your gallbladder" then she told me to just wait a month and call her again and to see how I'm doing. This was the first time anyone even mentioned gallbladder to me. I don't know where this came from and to be honest I'm impatient and don't want to hear wait a month. I've been in pain for years and I'm tired of waiting. Oh well, play a little pity violin for me. Why is it some people go in with the slightest complaint and come home with a fist full of medication. All I want is for someone to be proactive with me and give me suggestings on how to control the pain and they give me nothing, suggest nothing, and tell me to call back if I'm still having problems. How long should you have pain before they do something about it? I had hoped with the diagnosis of Crohn's someone would start to believe I'm sick. I think the surgeon was going to talk to my PCP who at this point seems to be the most understanding even though I have had problems with her in the past. I guess I'll just wait and see what she suggests. When you have pain from several sources I guess you just have to peel off one layer at a time before you get to the bottom of it. I probably put too much faith in the medication they gave me for the Crohn's hoping it would be the magic pill to help me. I have read enough and should have known better. Keep plugging away at your problem, hopefully you will get to the bottom of it soon. You have my prayers. Ginny

>
>Hi Ginny:
>Don't apologize for being confused. The doctors are confused too. I'm
>sure part of the problem is me in that I don't communicate very well
>about the pain. I have it all analyzed and compartmentalized in my head
>but for some reason can't get this across to them. (in the 15 minutes
>you get with them) The best I could do was with the pain doctor when I
>told him I was obsessed with the pain and it was ruining my life. So
>what does he conclude- "definitely some degree of depression here." UGH.
>What did he expect me to say "Golly gee, this pain is a nuisance but
>hey, no problem, I can handle it." My only hope is my long term
>relationship with my pcp coupled with my persistance or else a severe
>flare that the doctors can't ignore.
>What the celebrex seems to have done is separate the different pains
>from one another. It's hard to do that when you have pain from
>different sources. Celebrex has helped the deep, aching, boring pain on
>the right side (which is what was really getting to me) plus the pain in
>the back rt SI joint. What I am left with is some residual burning type
>pain on the right side, just enough to remind me that my problem is not
>solved, only covered up. I have no idea what this is (it could be
>something else like the adhesions, or the bowel, or it could be
>breakthrough pain from what I think is the SI pain) but I can function
>with it. It's hard to discuss with the doctors what this is when they
>haven't yet agreed what the problem is!
>That's interesting about your pain from prolonged lying in bed being
>relieved (somewhat) when you got up and around. You always think of bed
>rest for back problems, but my pcp did say that what you and I
>experienced pointed towards a lumbar-sacral problem. That really
>surprised me.
>As far as handling the emotional side of pain, I'm no help there. I
>have held out with my normal routine for as long as I possibly can but
>am starting to give in a little.
>Yesterday my husband remarked I had quite a puss on and so I just said
>"well, you have to understand I am in considerable pain." (from the
>mouth ulcer)but I haven't been very open with people outside my family.
>Maybe the anger etc. is something you just work through as time goes
>on. You are one step ahead in that now your problem has a name and
>doctors can deal with that. I think that I would be more willing to
>open up with others if I had a label to put on it. Every aspect of
>chronic illness is very frustrating.
>
>Chris


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