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Thread: A Friend

  1. #1
    ICN Member Jinny Jean's Avatar
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    Apr 2011
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    Sicamous, British Columbia, Canada
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    A Friend

    Just wanted to say that I met another girl with IC the other day! She actually happend to be WORKING WITH ME too! She just started last week! :) Also I know one other lady in my town who has confided in me a few times about some of her symptoms. I was able to give her links to the diet and help with some of her symptoms. It felt so good to help someone else :)

    Even though I wish she didn't have it, I have to say that it is nice to be able to TALK to someone who knows! FACE TO FACE, which I never thought could happen.

    She lives her life just like me, she works, she has a boyfriend, she is happy and she does very well!!! Proof that IC can be successfully lived with :D

    Jenn
    25 yrs old,

    Flaring: 20-25 x's, raw feeling in my urethra just before urinating.

    On a regular day: My frequency is normal 5-8 x's

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 14 months now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil and PROBIOTICS!



    Me in my graduation gown!



    My boyfriend and I


  2. #2
    ICN Member curlycue's Avatar
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    Jan 2004
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    A Friend

    Yes Jenn you are right it is very nice to see someone face to face that has this , I was in a conference in 2005 I think here in San Diego and meet a few people with IC but there is nothing like having a friend face to face to talk to ? I am glad you have meet some ladies you guys can help each other now and place IC with a face!
    Blessings,
    Ruth

  3. #3
    ICN Member curlycue's Avatar
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    A friend

    PS my mom and daughter want to go to Canada on a trip I have seen all of the Anne of Green Gable movies, so we are going to plan on that for next year? if everything goes well.
    Blessings,
    Ruth

  4. #4
    Support Leader kadi's Avatar
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    Dec 2003
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    California
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    At my last job, a coworker also had IC. I was sorry she had it too, but it was a relief to occasionally talk to someone who understood. And when we had treat days at work, we'd look at each other's plate and laugh. That helped keep it in perspective somehow.

    I'd say meeting Ruth was one of the high points of the 2005 IC conference for me! To actually meet someone I'd posted with was really great:) To meet some of the doctors who care so much for us and are trying every day to find a cure was also enormously encouraging.

    I love Canada! But you know that from my vacation post already:) I'm planning another trip to Quebec City next year and thinking maybe Nova Scotia after that! (Vancouver BC was a very IC-friendly vacation also - went with my mom a few years ago & we rented a hotel room with a kitchennette, saw the whole city on one of those hop-on/off buses! I really recommend it.)
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    This week's favorite one-liner:
    "Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
    "


    New second favorite:
    Please, Lord, let me prove that winning the lottery won't spoil me.
    - Unknown


    Adding a third because I'm just so darn easily amused...
    "Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
    - Bruce Graham"



    Current treatments:
    -IC diet
    -Elavil 30mg at night
    -Ditropan 5mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed, usually once a week or so
    -1 Vicodin at bedtime,
    -Flexeril 10mg at bedtime
    -Dye Free Benadryl for allergies occasionally
    -Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
    -Managing stress
    -Fur therapy: Hugging the cat!

  5. #5
    ICN Member curlycue's Avatar
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    Jan 2004
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    Riverside County
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    Friend

    Oh Kadi that is so nice, thanks I felt the same way. You know I was thinking why don't we have a conference of our own so we can all meet each other? I mean who ever would want to attend? I know I would.
    Blessings,
    Ruth

  6. #6
    ICN Member
    Join Date
    Jan 2011
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    381
    Thats great Jenn!

    I want a friend! :( xx

    Diagnosed with:
    TMJ Dysfunction 2009
    Vulvodynia and/or PFD 2010
    IC, based on symptoms alone 2010.
    PCOS March 2012
    I'm Pregnant
    Currently using: IC Diet, prelief with suspect foods and acupuncture.
    Medications / treatment tried and discounted:
    Fluconazole 150mg 1 per week for 6 months (yeast)
    Endep 25mg - 4months
    Lyrica 75mg - 2 months - FLARE
    Oxytrol patch - I think this caused retention.
    Countless creams, lotions and potions.
    Cystoprotek - no change in symptoms
    PT - for 1 year, has helped with pain with intercourse but not daily vulva pain. Seems to make daily level of pain worse.
    Various herbs and supplements

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