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People who are doing great often don't post - I am one of them!

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  • Jinny Jean
    replied
    Thank you SOOOO much for posting this ! I am in tears, but they are good tears. I wish so bad that people who are feeling good would come back and tell us its gonna be ok, so many of us need hope SO bad and its all we cling to!!

    THANK YOU THANK YOU. Thi is what I needed today!!!

    Jenn

    Leave a comment:


  • sjoprice
    replied
    That's wonderful. I was also feeling great, but got cocky and the "brown monkey(Diet Coke)" found its way back into my diet. So here we are again! I see some more Elmiron in my future, but this discomfort is motivation to tread the straight and narrow again! My heart goes out to everyone here who has more severe symptoms. Just my minor little case causes me a lot of distress. So many strong, supportive, and inspiring folks here.

    Leave a comment:


  • izazen
    replied
    Ditto!

    I feel completely normal.

    I can drink coffee, white wine, take a normal daily vitamin, etc. Thank God and the information received on the ICN.

    P.S. Drinking nothing but Evian water for 2 months!

    Leave a comment:


  • earthlady
    replied
    Glad to hear how well you're doing. I'm also doing well (pain free) and have been off my meds for a while now, only taking supplements now and then and watching my diet. I never thought I would be back to a normal life either but I am. It took a lot longer than I thought it would for the diet to have an effect but now that I know what my triggers are it's so much easier to stay pain free.

    Leave a comment:


  • HKay66
    replied
    Originally posted by Landish View Post
    Did you notice any improvement in your symptoms taking plaquenil? I am curious to know if it will work for IC.
    It is so hard to say, I often wonder this myself and wish there was a study on this. I trully believe, at least in my case, that IC is autoimmune related
    like my sjogrens....so, if plaquenil helps autoimmune conditions you can't help but wonder if it woud help some with IC. I have definitely gotten better since being on plaquenil, but hard to say what helped the most. I still take Elmiron 2X a day and did bladder instills off and on for 9 mos and PT for a few months.
    I still totally avoid citrus (haven't tried any though) and can only have limited amts of coffee, pop and chocolate. Most other foods don't cause me flares.
    I did do the elimination diet for close to a year and once I really could identify triggers started adding back food. I am still slowly getting braver
    and was a slow process as I never want to go back to the horrible pain I used to be in 24/7.

    I would love to hear if anyone else had any experience with plaquenil or changes in symptoms once they were on it!

    Leave a comment:


  • KarenAnne
    replied
    Holly, So glad you are doing well. I too am leading a normal life & pop in at times to give updates. In fact, I just started a thread to see what you have all been up to this summer. Stay well & have a great summer!!!

    Leave a comment:


  • Bojana
    replied
    Thank you for your post.
    It would be so nice if all people who got better would make a thread like you because it is so important for the rest of us to see that there is hope

    Leave a comment:


  • kadi
    replied
    So glad you are feeling better & thank you for posting - it gives us all hope!!

    Leave a comment:


  • Landish
    replied
    Originally posted by HKay66 View Post
    I first started having IC symptoms in Jan 09 and was in so much pain it was crazy. It took until April to get diagnosed. Once I started treatments, diet and meds I slowly got better. It takes time, but you can get better, have hope!!!
    Did you notice any improvement in your symptoms taking plaquenil? I am curious to know if it will work for IC.

    Leave a comment:


  • ICNDonna
    replied
    Thank you for sharing your success.

    Donna

    Leave a comment:


  • People who are doing great often don't post - I am one of them!

    I just wanted to say when it is posted that when people feel good they forget to post and go on with their busy lives - I have to say it is true.
    So many of us really get to the point we feel almost normal and slowly
    post less and less, even if we don't mean to.

    I used to be on here all the time and got such wonderful support and information. I have gone from utter misery to feeling good most of the time.
    I was just thinking about how much it meant to read posts where people got better and wanted to say it is possible and to have hope!!!

    I first started having IC symptoms in Jan 09 and was in so much pain it was crazy. It took until April to get diagnosed. Once I started treatments, diet and meds I slowly got better. It takes time, but you can get better, have hope!!!

    I still take Elmiron and watch my diet, but no longer need to do PT, or bladder instills and haven't for about 1.5 yrs. I now can eat fairly normally, but still have to almost completely avoid pop and coffee or will flare up very quickly if I cheat very often.

    I just wanted to share this quick post to let you know there are probably many people out there that have this condition, but have it under control
    now.....so for those of you newly diagnosed, please know it can get better.
    I never thought I would feel like a "normal" person again, but I do.
    Please have hope and I hope for healthy days ahead for all of us!!!!
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