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  • Feeling lonely

    Hi everyone - just came on to browse + let out my feelings. Does anyone else feel so alone with ic? When I can't go out or do things I feel guilty. I just need a bit of support. I feel guilty for not being healthy. At the moment its really getting me down - haven't had a flare up for a while but going through a bad one now Any advice would be greatly appreciated. frown

  • #2
    Welcome to the IC Network. You will find many supportive people here --- you will never again be alone with your IC.

    You did nothing to cause your IC. There is nothing you can do to cure your IC --- there is absolutely no fault on your part and you shouldn't feel guilty about having IC.

    I do hope you are out of your current flare soon so you will go back to feeling better.

    Sending warm healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      Hi Lou hi and Welcome:

      I know exactly what you mean by feeling guilty for not being able to do what needs to be done. I've always been a VERY independent person, both emotionally and financially. I haven't been able to work since last July and I feel so responsible for our (my husband and I) financial struggles. I was making good money before all of this crap and I sometimes catch myself thinking of where we could be by now. We'd have a new house, I'd have most certainly become pregnant by now and we would be moving on with our joint goals. I get really depressed sometimes too.

      What I try to do is think of how I can make things better and to try and learn from this situation. Since I'm home now, I get to spend more time with my hubby. In the near future, I hope to get the Baltimore/Washinton DC support group established. I converse on these boards just about daily to try and help anyone else who's feeling down. I also think to myself that there is a reason for why this is happening and God has something really special planned for all the trials and tribulations my husband and I are going through. I'm grateful for what I have presently and try to maintain that day-by-day, living in the moment attitude. So far, that's the biggest lesson IC has taught me. I'm sure there is more and it's not done with me yet.

      Take care and, to ward off your loneliness, I hope to see you around the boards!>Tina
      What you are is God's gift to you...What you make of yourself is your gift to God.

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      • #4
        Hi Lou, you are not alone. Find friends that are supportive of your illness. These boards are great. I work 34 hours a week. Not easy to do, but I do it. I hope your flare goes away soon. I will be praying for you. Hang in there.Deb angel
        Hang in there , There is hope.
        There is hope. Prayer works.

        Love, Debbie

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        • #5
          What am I supposed to say to my nosey co-worker who constantly comments that in this day and age there cannot be a disease that doctors don't know the cause of or cannot "cure". I always answer - the common cold, cancer... And my co-worker comments that if there is such a disease I wouldn't be the one to get it!!! It's not like winning the lottery! And when explaining that I'm too ill to have children at the moment, reply, "Gawd! Are you still sick? Aren't you ever going to get better? Is it going to be your crutch all your life?" And of course, helpful information is offered, such as, "The brain's of people who have chronic pain adjust to handle that pain. So that the brain of a person who has been in pain for over a year will start blocking that pain. So if you've been sick for over a year, in fact you don't feel pain anymore".

          So instead of following my instincts (which would probably land me in prison), I just smile and respond- "Really, that's interesting," and I move on. wink wink wink

          Chris

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          • #6
            I had a so call friend at work make fun of me going to the bathroom all the time, I had to take it to my supervisor. Well it didn't stop there, she got my close friend who I work with involved again and then I told her I if she continued going to this person, that I would go to manamgement. I said to her Kristen, if you have a problem with me, call me or come to me and not to anyone else. Well she did it, She went to Shelby. So of course, I had to go my supervisor and management. I didn't want to take it that far. I am dealing with enough stuff on my own. You are doing good grinning and bearing it. Just ask her if she if ever had a bladder infection? Someone suggested that to me. You are not alone. Gentle hugs to you. Love.
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie

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            • #7
              Yes, Lou, I felt that way in the beginning. Thank God I found this site and some of that loneliness ended. Finally other people who knew what the disease was, who had it, who had journeyed through it: some were where I was and some who had moved to a point of feeling better.

              I do not know where I would be without the ICN. It has been the biggest help in dealing with my IC. So glad you found us and posted. It will make a huge difference in your life if you keep coming back.
              Kim

              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

              *****************************

              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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