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  • auntiedeb
    replied
    I like all these ideas. While I was sitting here reading through them, I thought about a board on self estemm how the ic affects you and your body? How do you cope with the esteem? We may have a board on that. I would love to hear more from Jill and the other Icn moderators to see how they ared doing and coping. I knw that they are all busy. I appreciate seeing Donna on the boards and she is always a help

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  • wanda.c
    replied
    What about an inspirational topic or positive things life qoutes, positive encouraging outlooks,......etc. It seem if we always focus on dark and gloomy things that is what we feel and see. It seems like a lot of people focus more on negative and it comes easy for them, and few focus on positive. Creative healing (poetry, qoutes, passages,helpful sayings that were used as we grew up, values,,,,,,,,etc. I hope this is helpful. I know it is a focus I try to keep when working with others. We need others to help us stay focus and positive. Wanda wink

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  • liz2
    replied
    What about a section that gives day to day survival tips--everything from traveling or taking cruises to grocery shopping or clothes shopping to trying to do household chores and to cook. I have even read on here that someone uses a notebook computer in bed to pay her family's bills. The info about buying stamps through you mail carrier is just the tip of the iceberg as is the travel johnnie.

    Also, just what physical activities (besides sex) set off an IC flare. I can't vacuum without spending a week flat of my back afterwards. And, yes, I can think of some interesting responses, too.

    Yes, the exercise tapes help to some degree, but we desperately need more daily survival tips.

    How do people pack a lunch that can be eaten at work or on the go? What do they take, etc.

    --------------------------------------------------
    Hope is the thing with feathers
    That perches in the soul,
    And sings the tune without the words,
    And never stops at all. --Emily Dickinson

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  • sanctuary
    replied
    A great and necessary topic would be drug content. The doctors either don't care, or don't want to learn about drugs that cause urinary retension. A quick look in a PDR would have saved me a lot of money and pain from thoughtless doctors who were too lazy to read! Vioxx and Detrol, Elmiron, Elavil and a host of toher offenders and especially Oxycontin as with many pain meds cause at least some urinary retension that makes pain worse and then the doctor just ups the dosage and masks pain..and so it goes until you're fried..I think SOMEONE needs to look at retension caused by the drugs. I found Elavil and Elmiron caused this too and I thought it was helping but it masked symptoms not helped me. Dyes are also a probelm since most of us try to use generic drugs which the pharmacy told me.."According to FDA standards, generics can have a variance of plus or minus 20%" and that 20% is usually binders, coloring, presevatives,and a lot of JUNK we don't need and will cause us to flare. I think there should be a class difference of drugs for us, and why not?? WE matter too!! I hope this is addressed soon. sanctuary

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  • Teri
    replied
    Kelli~ I totally agree. I think it could be a board dedicated to incontinence AND to retention. The two seem so unrelated but the are the same, just the complete opposites.

    JILL O, can you hear us

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  • Kelli
    replied
    Thanks Poet for your message......don't make me beg Jill lmao

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  • poetgirl
    replied
    This sounds like a great idea, Kelli. A bunch of us definitely deal with varying degrees of incontinence, and it would be nice to have a board to discuss these issues.

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  • Kelli
    started a topic suggestion for new topic board

    suggestion for new topic board

    I noticed we don't have a board about incontinence. For some IC patients that can be a problem. I would be willing to moderate it as well. I think it would be a great idea. You could put in in the same section as IBS. Other members leave a message on what you think of this idea?

    Kelli
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