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» LymeNet Flash » Questions and Discussion » General Support » When people mean well-went to cfids and fibro meeting and...........

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Author Topic: When people mean well-went to cfids and fibro meeting and...........
griswoldgirl
LymeNet Contributor
Member # 5365

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I have this one woman who keeps insitisting I see her CFIDS and Fibro specialist. He is well known and is published and has a lot to offer if that was what I was going through.

Before starting Iv therapy and it was just fibro and 19 other diagnosis's things were different and I cannot seem to politely let her know that he cannot help me right now. I have enough cooks in the pot--DR, J, a medical psychologist and a shrink. All my medication comes from 2 sources as to not mess up a reaction etc.

she has invited me to swim exercise over and over and i keep telling her I have a pic line adn cannot go--but the message does not get through.

I am in Charlotte, NC-all lyme meetings have disbanded as far as I know-have reseached prettey well so I went to fibro/arthritis meeting to meet some new people--I am lonely and have no friends here-just moved her last august.

I feel bad. I emailed her and let her know that if I still have fibro and cfs problems after IV and lyme treatment is over I will be glad to give him a shot. I am just doctor burnt out. I have seen over 40 doctors in 8 states and no one until now caught the lyme--I have been diagnosed with everything from fibro, ms, possible lupus, IC, IBs etc etc etc etc to the all too famous shrink referal. I am finally happy with myhealth care team and want to be left alone in that area and still when up to it participate with the group--they were positive ladies and I need people in my life-but I do not want to exoend energy defending how my situation is different than theirs--herxing is something that until you experience it you cannot explain it.

I feel the same way that someone else posted that we should inject our docs with the disease so they can see what it is like first hand. LOL


Posts: 192 | From Myrtle Beach, SC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
minoucat
Frequent Contributor (1K+ posts)
Member # 5175

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Hi gris. It's frustrating but it's kind of funny too. Us Lymies see LD everywhere; CFSers sound the same. Get 'em in the same room, and it's the battle of the diseases...

Remember that you can get hypersensitive with LD, and you might be thinking you've upset someone when you really haven't. I used to obsess for days over something I'd said or done, long after everyone else had forgotten it.

I've found I far do better with people who are less intent on "helping" and more concerned with how to get through the day/week/year. I hope you can find someone like that in your group.

I have one good friend who's severely diabetic; she told me I'm one of the few people who never, ever says to her "have you tried x,y,z". I had to laugh, since I know from experience there's nothing more annoying than someone who's never been in my situation saying "you must try this wonderful new multiple vitamin..."

[This message has been edited by minoucat (edited 05 June 2004).]


Posts: 2331 | From WA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
PinchotGail
LymeNet Contributor
Member # 5066

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Hey Gris, hang in there!!!! You're right you shouldn't have to expend your energy defending yourself....so forget it. They still won't get it anyway. Just smile and keep on doing what you're doing. How's the IV going?? Take care

Gail


Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
   

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