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  • feeling down

    hi everyone i havent been on here in a while.its hard for me to share on a computer.i usally deal with this alone. my husband is the only one who sees me in so much pain. i have had ic for 4 years now and i have accepted it and the pain that comes with it. But a person is only so strong i go from having a flare up straight into having yeast infections all the time. why cant i have time were nothing is wrong.sometimes i feel like this disease is taking little bits of myself away. i stay strong for a while then when it gets to be to much i brake down and loose control. i have never thought of taking my own life but sometimes when the pain is so bad and im having more than one health problem at a time i think god why me? i tell god even though i dont mean it at the time that if i have to live like this then just take me to be w you. i love my husband and i have 2 kids i would never want to leave them but the pain and the disease and going to drs all the time is really depressing. please someone tell me how you handle this because its getting to hard for me.my family and friends dont undestand what im going through they dont understand why i cant eat at family gatherings.i feel alone with this. its so hard for me to share my feelings on this matter. im 36 and was diagn.w ic when i was 32.does everyone have a remission sometime in there lives or only a few?if someone could please just give me pointers on how to stay strong for my husband and my 2 precious little boys.thanks.

  • #2
    The best suggestion I can think of for you is to see a counselor to help you deal with having interstitial cystitis.

    You didn't mention what kinds of treatments you have tried --- there are so many options out there that it's worth pursuing them until you find something that helps you feel better.


    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
      (((leslier)))
      I am so sorry for your suffering. Boy have I been there. Be very good to yourself right now. Do something that helps you to feel pampered and even a tiny bit better. Warm bath, massage, pedicure, a call to an old friend? Don't deny yourself the very things that may help in some small way. Sometimes we are so down that we think we don't deserve the very things that can help make us feel special and comforted. I imagine with a husband and small children that you give more of yourself than you think right now, and little thought is given to what your own needs are.

      If you don't have a good therapist be sure to turn to one for support. They can help so much with that fatalistic thinking that gets us so down. If you are a member of a church, spiritual counseling should be available to you.

      I'm glad you posted. You are reaching out for help That is awesome! We can support you here but make sure you are looking for support there at home, too. Most times we have to make it we happen, as the people in our lives don't know how bad we are suffering, and even if they do, they don't know what to do to help. So action on our parts is necessary.

      Meditation is something I use now to manage stress, anxiety, grief, depression, etc. I won't lie, it takes practice and diligence and discipline to reap the benefits from it, but once learned it is a lifelong skill that helps with so many things. Even just deep breathing and clearing your mind can help.

      Hope any of this helps. Take care and please keep us posted.

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      • #4
        thank you so much for your words of encourgement. you have helped and touched my heart just by showing you care. i think i do need theropy. i have been thinking about that alot latley. i do take medication for the disease i take elmiron 3 times a day. amtitriptyline 50 mg at night ,hydrocodone 7.5 and muscle relaxer 4 mg 4 times a day also nuerontin 6 a day. but even with all that i still feel like i get up fighting this disease every day. its always a battle but thanks again for your encouraging words i dont know what i would do without someone to talk to.

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        • #5

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          • #6
            I'm am so sorry for your suffering. I was wondering what meds you are taking and right now it seems you are doing a lot. I also think therapy could be a good thing right now. I just wrote on another post that I decided to see someone to cope. It's hard to deal with any chronic illness/condition and sometimes having someone to talk to helps. In the past when I've been in therapy (for other issues) I gotten some great advice and found the therapist was actually a good resource for me.

            I've been where you are many times and post here a lot for support. I thank God every day for the folks here and kindness they've shown. I've asked God why I have this but belief that it's just reality, because in this world there are so many diseases. So I'm praying he shows me his will in this and that he gives me the strength to endure it while I'm on earth. I think he will show you too.

            Have you noticed any improvement at all with the diet or medicines?
            Frances

            Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

            Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

            Other conditions: Migraines, allergies, mild IBS.


            "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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            • #7
              I really wish there were more support groups available for this but they seem to be few and far between. It would have made it so much easier had I had a group of people to share this with who knew exactly what I was talking about. Seeing a counselor sounds like a good idea to help you cope. I found myself getting very angry over having to deal with this condition, and counseling has been a big help.

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