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Grateful for Jill and the moderators at ICN

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  • Grateful for Jill and the moderators at ICN

    Hi everyone,
    I was just sitting here today and I started to think about how much work it is for Jill and the moderators to run this place and the main ICN network. The moderators volunteer so much time and energy to help this place be the wonderful place it is for all of us. I especially am grateful to Donna, who has been doing everything she does with DIALUP!!! You are a true angel Donna. And so are you Sarojini, Sandy, Tiggergal, Tracey, Kara and every other moderator on here. Sorry if I left out any of the names, I am just naming off the top of my head. I thank you very much.
    Jill- you are a very special person. I am always amazed at the compassion, energy and dedication you show towards the issue of IC. And i am amazed whenever I read about the other causes you support, many that are related to animal protection.
    Sorry if this is a little jumbled, I am still really jetlagged but that doesnt diminish my appreciation for all of you!
    Love Sarah
    Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

  • #2
    I second that Sara...
    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.

    Comment


    • #3
      Thank you, Sarah. I know now and then moderators especially need to hear this ----- now was one of those times so thank you for posting what you did.
      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

      Comment


      • #4
        Yes it was Thank you so very much. ((hugs))
        lets not forget how important you are too, and the support you give.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          Thank you! Your message couldn't have come at a better time!

          Warm hugs,
          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
            This was great. Thank you so much
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.

            Comment


            • #7
              Thank you, I agree it was great timing.

              Comment


              • #8
                Thanks for all you do
                Miss Bessie

                Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                Comment


                • #9
                  No, thank you guys!! LOL. Seriously though, I know that many of us may think about how much you gals do and how much work it is but probably don't say thank you to all you personally. Sometimes it is just nice to hear an actual voice of appreciation though, I am sure.
                  I am sorry if I left out any names, I wanted to go back and edit to add more but I dont have a full list of all the mods! All of you are wonderful though.
                  Sarah
                  Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

                  Comment


                  • #10
                    Let me add my thank you as well! So nice to hear!!!!!!

                    XOXO
                    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


                    • #11
                      Thank you for your timely post! I agree, they are all wonderful and really put their hearts into what they post. Thanks for your lovely post! Hugs, Amy

                      Comment

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