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  • Need a prayer for Tuesday..

    Tuesday i go back to long island to have my 2nd round of botox with dr. moldwin. Just need some prayers that everything goes well. I have regents exams as well including the day after the procedure so another prayer is that i can make it through the exams and do good on them. Thank you all so much!!
    Laura

  • #2
    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

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    • #3
      !!

      Thank you!!

      Comment


      • #4
        I'll be praying for you that everything goes well.

        Ansam

        Comment


        • #5
          Prayers coming your way!
          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


          • #6
            I'll be thinking of you.

            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

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            • #7
              !!!!!!!!!!

              Thank you all so much for caring!!
              Laura

              Comment


              • #8
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                ICN 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.

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                • #9
                  (((hugs)))
                  Sharon

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/diet/


                  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.

                  Comment


                  • #10
                    Dear Laura,
                    I pray along with you that your second round of botox will bring as much or more relief as the first. I also pray that our prayers will be heard and that you will have success on your exams, despite the difficulties and treatments you are undergoing. I also pray that Dr. Moldwins' hands, as a reknowned urologist, will be guided by God so that you will be in the very best of hands and get the very best of relief from your suffering, and so that your doctor's gifts will once again be known and will be able to help not only you, but many others in the future. Keep us posted on how things go!

                    Comment


                    • #11
                      Oh wow!

                      That was an amazing prayer i thank you so much. For both my parents being pastors they would appreciate that. Thanks again so much and i will keep you all posted!
                      Laura

                      Comment


                      • #12
                        SEnding some prayers your way that everything will go smoothly all around.
                        ~ Stacey

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                        • #13
                          !!!!!!!!!!!!!!!!!

                          Thank you all soooooooooo very much. I really appreciate it!!!!
                          Laura

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                          • #14

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