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  • Official dinners and office Christmas party

    Hi everyone,
    This season is challenging for us, at least I experience it this way. The doctors still don't give me a clear diagnose, I seem to have PFD and even inflammation in the ligaments and in the nerves that go to the urethra and bladder. I have urethral pain, almost constantly, the diet is only preventing the worst pain, that is when also my bladder 'speaks up'. I tried the diet for 2 months, then stopped it with the result that after two weeks with wine and other no-go food I had a really bad day with bladder pain. So I learned that and stick now to the diet. It seems I tolerate a certain amount of acidic or spicy food, but only in very moderate quantities (which is not to bad in relation to others). But as I said, I don't want to risk another flare.
    Here in Denmark, were I am living, the office Christmas party is really a big thing and unfortunately is most of the traditional food impossible to eat for us with bladder problems. Pickled herring, smoked salmon, red cabbage made with spices and red wine and so on ... It is basically only potatoes, maybe part of the meat and the rice pudding I will be able to eat. And people drink alcohol, a lot. They know that I live nearby, so the excuse that I have to drive is not a possibility. I am simply afraid of being asked why I don't eat all the other stuff and why I don't drink ( I drank alcohol before). And I don't want to tell them about my condition. So, what shall I do? This fall I tried to avoid all official dinners, but I am a very social person and it is making me even lonelier than I feel already.
    Any advice here? What's your experience?
    All the best from Denmark, and I also just would like to thank everyone here ... You help me to hang on in this ...
    Pernille
    Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
    Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
    Greetings from Denmark!

  • #2
    Re: Official dinners and office Christmas party

    Dear Pernille,
    I so understand what you're talking about. I live in California and most of our catered events here are Mexican food, which is mostly impossible on the IC diet. I usually go to the first half of a holiday party if it's one I can slip away from. The more people drink, the less they remember (and the less pleasant they often become), so by going in the beginning, people are more likely to remember that I was there and they are less likely to get aggressive or overbearing the way some people do when they drink.

    About the food & drinks, I usually just say I'm on a limited diet because of a medical condition, and here's the trick - immediately change the subject to something that you mutually share. A lot of people don't know what to do after someone says they have a medical problem and to keep the conversation going after you say that, they will start to pry or offer suggestions, or worse, pity. If you immediately change the subject, "So how long have you worked here?", "How's your grandson doing?", there's no awkward pause and you've given a polite message that you're not wanting to talk about it. If someone does press me on it, I just say, "This is a party & I want to enjoy it, so let's talk about ______ instead." Rarely do I have to get to that though. Most people graciously take the way out that you show them in conversation.

    Good luck (and good for you for getting on the diet! It really does help!),
    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


    • #3
      Re: Official dinners and office Christmas party

      Hej Kadi,
      Thanks so much, great advice, I will try that. To change the subject might really make them stop. The Mexican food might even be worse ... The rice pudding is really good, can recommend it!
      Whether the diet is really working for me, I will find out. My doctor thinks I have basically PFD and a pudendus irritation. Diet would not help, but I assume that even then the bladder nerves are somehow connected and the diet will help not to irritate them further. I also try to eat food that is low in oxalate, this is a bit of challenge because it reduces the list of the non-bothersome foods further. At home the diet is no problem for me. I feel a bit self pity when I am in the good food store with lots of forbidden delis, but I actually use less money for food and I lost 6 pounds. So, I try to accentuate the positive ,
      Have a great Christmas time and thanks!
      Pernille
      Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
      Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
      Greetings from Denmark!

      Comment


      • #4
        Re: Official dinners and office Christmas party

        Hi Pernille,

        Oh yes, for Mexican food, I love the rice pudding, flan (that's the best!), pan dulce (pastries), and atole (a cornstarch drink flavored with brown sugar).
        For main dishes, I make my own tacos (Trader Joe's taco shells or homemade tortillas, ground beef seasoned with garlic, salt & oregano, mozzarella cheese, romaine lettuce, and a little Philadelphia cream cheese instead of sour cream). Quesadillas with homemade tortillas, mozzarella, and sauteed red bell pepper. Bean & cheese or egg, bean & cheese burrito for breakfast.

        I hope you'll find you can eat lots of foods, but with a little creativity, the IC diet gets easier over time!
        Have a great time at the party!
        Kadi
        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


        • #5
          Re: Official dinners and office Christmas party

          Kadi has offered good advice. I have found that a simple "no, thank you" - said with a smile - works very well for me when I'm offered a food I can't have. Most of my friends know I have health problems so nobody ever pushes me.

          Good luck! And have a good time at the Christmas parties. The parties are the only thing I miss from my working life since I retired.

          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

          Comment


          • #6
            Re: Official dinners and office Christmas party

            Thanks a lot for your answers. I will try my best to have fun ... I guess the most important thing is to be firm in your answer that you don't like to eat something. So, I have to put my self-pity away...
            Is it possible to have IC without any pathological signs from the cystoscopy? I had a hydro under anesthesia in January 2012. Nothing abnormal, also no mast cell growth from the biopsies. Therefor they told my I didn't have IC. But the pain was still there, though with months in between where I didn't had pain. Now I have pain (mostly urethral pain, but sometimes also frequency and pain in the bladder) since May. My new doctor wants to look into everything, the manual assessment showed that ligaments might be inflamed or irritated. I will have a MRT the 17th of December and another ultra sound of the ligaments the 20th of December. Meanwhile I keep the diet, though the pattern of how food is correlated with pain is not very clear. But I guess I will find out over time. I take glucosamine, Quercitin, valerian and calcium/magnesium citrate. I ordered also desert harvest aloe Vera. I couldn't order Cystaq or Cystoprotek because of the regulations, that was at least what amazon said. They cannot ship it to Denmark. The IC shop also mentioned problems shipping to Europe. So I take the different parts of these medicines, which ironically enough I can buy online or in the pharmacy.
            Well, again: thanks so much! And I will try my best. I hope that if I have a proper diagnosis things get easier. Then I will simply tell them.
            All the best
            Pernille
            Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
            Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
            Greetings from Denmark!

            Comment


            • #7
              Re: Official dinners and office Christmas party

              Oh and Kadi, your Mexican food sounds delicious, I will have to try this!! You I inspired me to make a tomato free pizza today, just with red bell peppers, mushrooms, squash and mozzarella.
              Thanks!!
              Pernille
              Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
              Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
              Greetings from Denmark!

              Comment


              • #8
                Re: Official dinners and office Christmas party

                I feel you on this one. I just came from a christmas party today and there wasn't one single thing there except for cold shrimp and some crackers that I could have. So I nibbled on that and when the servers came around with little nibbles on trays, I asked a lot of questions about things and said 'no thank you' and left it at that. I brought my own water with me, and poured it into a plastic cup and sipped that. one person said "is that special water" and I said "yes" and they looked at me like it was vodka or something and I just said "I have to drink a high PH water" and she gave me another look and said I just ignored it. I used to worry about what people would think, but now I just don't give a fig.

                someone asked me if I was having wine, and I said no. And they asked why and I told them that I am taking some medication that doesn't allow alcohol with it and they left it alone. I find that works better than "I don't drink."

                And I make a lot of tomato free pizzas! I'm on a huge butternut squash as a base kick. It's yummy!!

                Hope you have a great time at the parties!
                ----------------------------------------------------
                My blog on IC, adoption, and academia: the garlic whisperer

                Diagnosed Jan 2013. Currently taking:

                200mg Elmiron morning and night
                25mg Elavil at night (no drowsiness or weight gain)
                culturelle in the morning
                SLIT drops for allergies (environmental) 3 drops/night under the tongue
                zyrtec 24 hour nightly (recommended by uro)
                Instillations 3x/week: Parson's Solution
                uribel and prelief as needed

                Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
                No longer need them, so I only take them during flares.

                Comment


                • #9
                  Re: Official dinners and office Christmas party

                  Hi,
                  Well, this sounds like you didn't have such a great Christmas party ... I am sorry for that. Your co- workers seem to be not very emphatic. But on the other hand most people cannot imagine how it is to live with this disease. My father cannot stop asking me, whether I possibly can have pain all the time.
                  I had a look at the menu and there is not much I can eat. I will take something with me, just some salat and there will be white bread. I hope they will soon get to the dancing part, that' s fun and I like to dance.
                  Butternut squash I never used, do you use it on the pizza?
                  And by the way: feta cheese is on the ok list, I am a bit doubtful. I bought the mildest type of feta but suspect it to cause the itching and sore feeling in my urethra. But as it is always, I am not sure. I find it difficult to track the problem foods down. My pain level is always going up and down between 2 and 5. And sometimes it is clear that no food was involved.
                  All the best
                  Pernille
                  Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
                  Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
                  Greetings from Denmark!

                  Comment


                  • #10
                    Re: Official dinners and office Christmas party

                    I love a butternut squash, kale, chicken pizza. I roast the squash in the oven at 400 until soft and then mash it. I spread it in a thin layer on the pizza like I would sauce. Then add whatever toppings I want. I usually do chopped kale and some roasted chicken. I did steak once with it too and it was good. Then I sprinkle with a little granulated garlic. I've added chopped pear too for a little sweetness. Then I take string cheese and put that on top. It's soooo good. I've also made a quesadilla with this exact mix. Amazeballs.
                    ----------------------------------------------------
                    My blog on IC, adoption, and academia: the garlic whisperer

                    Diagnosed Jan 2013. Currently taking:

                    200mg Elmiron morning and night
                    25mg Elavil at night (no drowsiness or weight gain)
                    culturelle in the morning
                    SLIT drops for allergies (environmental) 3 drops/night under the tongue
                    zyrtec 24 hour nightly (recommended by uro)
                    Instillations 3x/week: Parson's Solution
                    uribel and prelief as needed

                    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
                    No longer need them, so I only take them during flares.

                    Comment


                    • #11
                      Re: Official dinners and office Christmas party

                      Thanks Miniguinea, next time I make the pizza with butternut squash, sound really delicious!! And I kale I really like but never thought of using it for pizza.
                      Thanks for inspiration!!
                      Pernille
                      Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
                      Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
                      Greetings from Denmark!

                      Comment


                      • #12
                        Re: Official dinners and office Christmas party

                        you are welcome!
                        ----------------------------------------------------
                        My blog on IC, adoption, and academia: the garlic whisperer

                        Diagnosed Jan 2013. Currently taking:

                        200mg Elmiron morning and night
                        25mg Elavil at night (no drowsiness or weight gain)
                        culturelle in the morning
                        SLIT drops for allergies (environmental) 3 drops/night under the tongue
                        zyrtec 24 hour nightly (recommended by uro)
                        Instillations 3x/week: Parson's Solution
                        uribel and prelief as needed

                        Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
                        No longer need them, so I only take them during flares.

                        Comment


                        • #13
                          Re: Official dinners and office Christmas party

                          I am 0 for 2 at Christmas parties (been to 2, had a good time at 0, still have more to go). Among other things, while everyone was getting fancy drinks, I couldn't even get water without lemon!

                          Comment


                          • #14
                            Re: Official dinners and office Christmas party

                            I give you a high-five just for attending them, I just don't go. I have so many other food restrictions beyond IC that it's not something I would consider. I'm just not into watching everyone eat and drink things I can no longer enjoy.

                            Originally posted by sdm View Post
                            I am 0 for 2 at Christmas parties (been to 2, had a good time at 0, still have more to go). Among other things, while everyone was getting fancy drinks, I couldn't even get water without lemon!

                            Comment


                            • #15
                              Re: Official dinners and office Christmas party

                              I went to one this year, and I'm calling in sick for the others. I just don't feel like it. I'd rather sit at home watching Charlie Brown Christmas with my puppy dog in my PJs in a dark room with the tree lit. Makes me happy and it's peaceful. That's what's important during this season...us being at peace.
                              ----------------------------------------------------
                              My blog on IC, adoption, and academia: the garlic whisperer

                              Diagnosed Jan 2013. Currently taking:

                              200mg Elmiron morning and night
                              25mg Elavil at night (no drowsiness or weight gain)
                              culturelle in the morning
                              SLIT drops for allergies (environmental) 3 drops/night under the tongue
                              zyrtec 24 hour nightly (recommended by uro)
                              Instillations 3x/week: Parson's Solution
                              uribel and prelief as needed

                              Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
                              No longer need them, so I only take them during flares.

                              Comment

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