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  • What's Wrong With You?

    I've had IC for years (and years, and years) now and I still have trouble answering this question: "What do you have?" or "What exactly is wrong with you?"

    (I know what it is - so I'm not asking that)

    I've tried the long version and the short answer but still am at a loss everytime I'm asked. I've hid and trivialized my health issues, I don't want to anymore.

    Sometimes I feel I need to say something because I might cancel plans a lot all of a sudden. And sometimes, like in a new relationship or friendship, I want to stress how huge this is for me.

    Saying "I have food allergies" because I have to be a picky eater, seems trivial. I have a real condition. How do you tell someone with out making it sound to....serious or too trivial?
    Last edited by tialia; 06-27-2011, 05:21 PM.

  • #2
    How about something like "I have a sometimes painful bladder disease called interstitial cystitis that forces me to avoid some foods and drinks." If the individual asks questions you can respond with more information.

    Donna
    Stay safe


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    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

    Comment


    • #3
      I do the same as Donna, but I sometimes add that it's "auto-immune" or that it's "genetic", which in my case it is. (My mother & grandmother have IC, just milder than mine.) That seems to either open the door to discussion or closes it. If that day, I don't feel like having IC become the topic of discussion, I change the subject immediately & most people take the hint. I hope that helps a bit!
      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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

      Comment


      • #4
        Originally posted by kadi View Post
        sometimes add that it's "auto-immune"
        This is what I say most times. Most people just don't understand IC, even if you try to explain it. Hell, I HAVE it and still don't understand a lot about it. As it turns out, many people seem to at least have a concept of auto-immune diseases. I've been surprised by the number of people that have responded with something like, "Oh, I'm so sorry. I haven't heard of IC but I have fibromyalgia." Or Grave's Disease, or RA, etc. etc. And if they don't have it themselves, many people know someone that has a kind of auto-immunity issue. Even without going into all the details of IC, if I say, "I have a condition where I feel like my own body is attacking itself sometimes" a lot of people I've talked to about it at least understand that it's painful and must be managed, and not just something you can take a couple pills for and "get over."
        Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

        Current medications/treatments:
        Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

        Previous medications/treatments:
        Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

        Comment


        • #5
          For me, it depends on who's asking. I have found that men in particular tend to be uncomfortable as soon as I say the word "bladder," yet there are other people I don't mind telling.

          So, my generic answer is, "I have a chronic medical problem that can cause me pain; controlling my diet helps me manage my problem." If I feel like I want to tell all, I do. I do try to tell women more because you never know who might have symptoms but not realize there is an actual condition called "IC."
          Lori

          40 y.o. mom, wife and marketing manager

          "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

          IC symptoms began Feb 2010; diagnosed Mar 2010

          Treatments:

          Oral
          Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

          Other
          Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares

          Comment


          • #6
            I've only had disclosure go bad once in 8 years. Recently at a retreat, the people at the table asked about my diet. I explained and one of the men at the table told me he is a certified acupuncturist. After most of the people left, I asked him if he knew a good acupuncturist in my community and he told me that he himself treats a lot of women with pain in the vulva & he reached under the table and squeezed right above my knee and told me "there's an important pressure point there." I was so surprised, I just said, "Oh, ok, thanks.", asked him again if he knew someone in my area, then slowly picked up my bag and left the table. I think he was a little disappointed I didn't react. (I taught at a very rough high school for 8 years, so it takes a lot to ruffle my feathers now). But I thought it was strange & a bit creepy. It didn't scare me, but I didn't sit near him again for the rest of the weekend. Overall though, most of the time, it's not a problem to give a brief explanation, and I know of at least two women who were diagnosed & got treatment that improved their lives - because I talked about IC.

            But, again, depends on my mood, who I am with, and what the context of the situation is, as to how much I say about IC. I have a new job I'm starting & while I've already explained it & given my medical letter to my boss for accommodations, I won't be talking about it until I know my coworkers better...
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment


            • #7
              Your IC Elevator Speech

              Oh my, Kadi! Was he flirting? ::shivers::

              I actually wrote an article about having an IC Elevator Speech ready for media occasions, but I think some of what I said applies here also.

              Here it is:

              http://interstitial-cystitis-diet.bl...peech-did.html

              The idea is to give as much information in as few of words as possible As Kadi said, if people want more information, they will ask.

              I was on a cruise last fall, and I was able to go 15 days with three other couples at our table and three servers without going into detail. I just said I have a number of food sensitivities. I think because there is so much of that these days, no one blinked an eye.
              Julie Beyer, MA, RDN
              IC Dietitian, Patient Advocate, Speaker, & Author


              Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

              Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

              You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

              ........ ........


              Other IC Diet Resources:

              IC Diet Webinar
              IC Diet Website
              For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
              Free IC Diet Booklet: What Can I Eat?
              Confident Choices IC Diet Blog
              IC Diet Newsletter


              *Let's Connect!*

              Comment


              • #8
                I hope not--his wife was on the retreat!
                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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment


                • #9
                  ive found that i have to say that if i eat foods im sensitive to, i will be in a great deal of pain. friends who dont understand that will say "oh, you just have to try this... a little wont hurt", as if im just on a "diet".
                  i usually just tell people "the lining of my bladder doesnt protect me from what i eat, so i have to avoid spicy and acidic foods or else i feel it burning my bladder and it's very painful". that works for me.
                  my closest friends are always trying new things just for me. they enjoy the cooking challenge and it makes me feel important/special to them. that's probably why they are my closest friends!

                  Comment


                  • #10
                    I just say "I have a disease with ulcers in my bladder, and certain foods cause pain."

                    I've found that to be the shortest, easiest explanation. It works for me!
                    Conditions:
                    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

                    Medications
                    Elmiron 3x day
                    Trazadone at bedtime
                    Tramadol as needed for pain
                    Monthly B-12 injections
                    Continuous Birth Control (even though I had a hyst, to control cysts)
                    heating pad, hot epsom salt baths, strict IC diet
                    Interstim implant 9/11
                    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

                    Failed Bladder Treatments
                    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

                    Comment

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