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  • #1

    Flaring 3:57am

    AAAAGGGHHH.
    I'm so frustrated - flaring. Could be from some new cookies I ate last night (though I didn't see any problem ingredients on the label) or from leaving the instillation meds in longer than usual (probably that one).

    Whatever. It's 4am, I've had about 3 hours of sleep tonight & in an hour & a half I'm getting up to go picket outside my school since we're (teachers) still on strike. They want us picketing at our job sites for 9 hours (6:30am-3:45pm). That's not going to be me. I think 6:30am-12pm (picketing & lunchtime rally) will be plenty. This is very stressful, which is probably not helping my flare.

    I took 2 Darvocets at 10pm & a Pyridium, am using a heating pad & electric blanket. Have done 2 crossword puzzles, listened to a bible study tape & worked on the workbook, answered my emails, eaten a bowl of cereal, watched a bunch of infomercials....

    Now I'm going to go back to bed & listen to my cat snore. She, it seems, has no trouble sleeping.

    Thanks for listening to my vent. (I know you all understand!)
    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!
    Tags: None
  • #2
    Kadi,
    I am so sorry to hear that you are in such a bad flare. Not being able to sleep just always make mine worse. I will be thinking about you today and hope that you're picketing will go by quickly and before you know it you'll be back home in bed getting some rest.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment

    • #3
      re

      The Magic Bullet..and Proactiv solutions are my favorite informercials. You know... I bought them both!

      Anyway...drink lots of water..
      Quit ELMIRON due to hair loss
      Cystoprotek ROCKS!

      find me on FACEBOOK -
      search my email [email protected]

      Current Meds:
      AM Cystoprotek & ATARAX 50mg
      Dinner CYSTOPROTEK
      PM Elavil 25mg

      Comment

      • #4
        If you're still in pain, it should be okay for you to go back home to bed.

        Sending healing thoughts,
        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

        • #5
          Hugs Kadi, hope things ease up for you.

          I have to agree that Magic Bullet seems like a good kitchen tool.

          Comment

          • #6
            Gotta love informercials.... I too hope you are feeling better and fast - there is nothing worse than feeling like crud and not being able to sleep on top of it/because of it. I know it makes me feel that much worse... Let us know how the picketing goes for you - and I am with Donna, if you feel punky, don't feel bad on hightailing it home!!!

            Hugs!!!!
            Hugs,
            Tracey
            How do you eat an elephant? One bite at a time...

            Harry arrived 2/23/09!



            *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            IC Diet Cheat Sheet:
            http://www.ic-network.com/diet/2009icdietlist.pdf


            Dx's:
            IC dx'd Nov 2004
            Lymphocytic Colitis dx'd July 2005
            Possible IBS
            Current IC Meds
            Vistaril 25mg in the evening
            Previous IC Meds taken:
            Cystoprotek - 2 caps 2x's a day
            Elmiron, 100mg 3x's a day
            Ditropan, 5 mg 3x's a day
            Others:
            Wellbutrin 150mg 2x's a day for Anxiety/IBS
            Pepcid 40mg a day for GERD
            Zytrec for Nasal Allergies
            Align Probiotic daily for IBS

            Comment

            • #7
              Thanks! I made it picketing from 6:45-10:45, then a rally from 11-12:30. I'm doing much better now. I think the slow walking actually helps my bladder. But, very very tired, so I'm making lunch, then I'll lie down for a few hours. Maybe a little gentle yoga & bath after that.

              What has been awesome is how much the community is supporting us-- most parents kept their kids home, which is probably safest, since the district was only able to find 2 scab substitutes to cover the 125 teachers & aides at my school. Out of 2200 students, only about 50 came to school (and I think a lot of them sneaked out at break--bored, they're herded into the cafeteria & given magazines to read.) The substitutes unionized this year & they've been going to other districts for work & not crossing our picket lines. The city where I work has a lot of present & former union workers (lots of former farmworkers, teamsters & autoworkers), so there has been lots of honking & cheering for us. Every time I've walked with my picket from the shopping center to the district office, someone comes up & wishes us good luck. It helps. I'm still worried, how long will this take, etc. But, I do believe in this strike for this situation (very hostile work climate as well as salary issues), so I'm hanging in there.

              Thanks for listening. I appreciate all the support right now!
              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

              • #8
                Glad to hear that you are feeling better. Who knows--this may turn out to be a real blessing since you seem to think that the slow gentle walking helps you. Hope you get a great nights sleep tonight.

                Janice

                Comment

                • #9
                  gladyou are feeling better.. I was up with you here with a sick baby. too bad we didn't know we could have chated on the puter.
                  'The will of God will never take you where the Grace of God will not protect you.'

                  Comment

                  • #10
                    Kadi,
                    Glad to hear you're feeling better. Take care of yourself!
                    mom_in_ma

                    Comment

                    • #11
                      Shoot. It was the cookies (Annie's Organic Bunny Grahams). Everything looked "safe" except the "natural flavorings", but since that was almost the last ingredient, I thought it would be ok. Wonder what it was that got me (twice!). Darn. Oh well.
                      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

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