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    Another post made me wonder if it is possible that keeping our disease so close/private to home is actually counterproductive.

    I realize that these are private issues, but I have been telling everyone I know that will listen about IC and what I am going through, not just physically, but also with doctors and the run around about getting a diagnosis.

    It isn't because I want sympathy or because I want pity. To the contrary. I just want people to know that others can be suffering silently.

    IC isn't a stroke, or a heart attack or something that can be "seen", so would it be better to quiet the snide voices in our head that want to say something nasty to impolite people or quell the urge to poke their eyes out with shrimp forks so that we can calmly and matter of fact-like tell them what IC is and how it is common and quite sufferable?

    Please discuss.
    Sonja

    Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

    Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

    IC Diet: Very diet sensitive, esp. to spices.

  • #2
    Sometimes I try to inform people and it just doesn't work. Have come to the conclusion that people w/out IC will never "get it". I tried to be open the other night and they acted like I was lying b/c to most people there's no way that some one could not have so many "natual foods" or vitamins, or anything else that triggers flares. Whenever I flare at my parent's house, my dad always starts in on how "there's no possible way that I could actually be peeing every 15mins and something is coming out". He says its not physically possible. Sometimes I'd like to just take him with me and say "see, do you hear and see that...still peeing...you're right, it's 'impossible'...It must just be all in my head" So frustrating!!!!!!

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    • #3
      I tell most people I have IC if it naturally comes up in coversation - and I did when I was symptomatic, too. But I have been fortunate to be surrounded by people who were supportive and believed in the disease and the awful effects it can have.
      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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