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  • thankful for such nice people on here!

    hi everyone!i wasn't sure where to post this but i just wanted to say how thankful i am to have found this web-site and such a wonderful support group of people.you ALL have been very kind in answering my posts and everyone elses for that matter.you've given your kindness and support and that is what each and every one of us came here for was support and understanding.that is what i have found here and just wanted to say ,"thank you ALL!"


    duana
    Last edited by duana; 09-21-2009, 12:55 PM.

  • #2
    I am glad you have found some support! I feel the same way about this forum as you do. I have learned SO much from everyone and they've all been so nice and helpful.
    -24.

    -Started having symptoms in May 2009.


    -Doing pretty well on diet alone.

    Comment


    • #3
      I agree and I'm glad you're here too Duana
      ~Ashley

      Comment


      • #4
        Glad you like it here!!
        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


        • #5
          I'm very glad you found us. I agree that there is a wonderful group of people here.

          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 website has been a godsend in so many ways. I am so greatful!
            Angela

            Diagnosed in 3/09
            Symptoms since 8/08

            I have found nothing that has worked for me and I have tried:

            Elmiron (2 mos)
            Elavil (2 mos)
            Vesicare
            Detrol
            Toviaz
            Hydrodistention
            DSMO instills
            Markain cocktail instills
            And I have had the Interstim implanted.

            Comment


            • #7
              Thanks to Jill, we have a place to come to for information, support and friendship.
              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


              • #8
                Duana, I'm glad you found us. I say ditto to all of the comments in the replies. I truly don't know what I would do without this wonderful website. Keep us posted on your progress and feel free to vent any time you feel like it. Lord knows this disease requires plenty of venting.

                Hang In There
                TexasHoney

                Let's keep praying for a cure.
                IC Symptoms began in early 2001
                Divorced : Sept 2002 (Partly due to IC)
                Diagnosed with IC in April 2004
                Most recent injury - Rupurtured Left Achilles Tendon
                Wed Jan 28 2009
                (Ice Storm Accident)
                2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                Other Injuries
                Broken Left Ankle - July 2004 ( fell off ladder)
                Broken Left Ankle (Again) - May 2005 (car accident)
                Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                CURRENT MEDS
                Elmiron, Pyridium

                Comment


                • #9
                  thankful for such nice people on here

                  I completely and totally agree, this website was a lifesaver for me when I was first diagnosed, I was literally so depressed and feeling so alone and in so much pain. I found the network and it was a wonderful and uplifting experience to be able to know that others knew exactly how I felt and were there for support. I have always said that this support group is just wonderful and always to know that there are caring people who will help you through the dark days, saved me in so many ways. I do not post as often as I used to but always try and get back whenever I can to the people who literally at the time saved my life. I think Jill has done, and is doing a wonderful job in helping us all through the bad times and know we have a great support group behind us at any time we need loving words and help. I cannot imagine my life without this support group in dealing with my IC. Iris.
                  Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

                  Comment


                  • #10
                    I say "dido" to all, these boards have been a Godsend to me!!!

                    hugs and blessings
                    MARY


                    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

                    Comment


                    • #11
                      This is a great place*

                      I am greatfull I found this fantastic web site , and support group , Full of wonderfull people.

                      And the fantastic smiley icons really help me vent my frustration with this illness.:woohoo:

                      Comment


                      • #12
                        I feel the same way! It is great to vent sometimes and to try to be positive for others too. I've only been coming on for about 1and1/2 months, but it was like an aha moment seeing some of the posts that I could so relate to. I felt like I was constantly explaining how I was feeling to friends who had a hard time understanding it, and here I always feel understood..We share so many of the same experiences.
                        I also feel greatful every time I have a good day where I am active and 'normal.' Whenever this happens, I think, wow, it's over!! (I so wish, but then reality hits the next day.) Anyway, I am greatful for my own optimism. haha
                        The advice I have recieved on this web-site and the medical info I have gained has been priceless!

                        Comment


                        • #13
                          I would feel so alone and isolated if it were not for this site!

                          The day I found this site I was so excited but reading others posts broke my heart, but at the same time I felt right at home from the get go. I was welcomed by others, and others have been so helpful for insight.

                          I want a cure, or atleast some relief. I have the peeing somewhat under control thanks to this website and suggestions I was given on things to take. I get scared to say that though as it seems when I boast, then it backfires on me and the peeing begins! The pain though, oh the horrid pain which I take pain pills for never seems to go away and has only seemed to get worse and worse.

                          I pray that one day I will come to this site and it will say at the top "Breakthrough...a cure has been found for IC!" wishful thinking, dreaming, hoping...

                          Thank you all who have been so sweet to me. This place helps me tremendously and I would be lost without it.
                          Last edited by asIshallbe; 10-25-2009, 11:27 AM.
                          As I think, so I shall be....

                          I have had IC for 4.5 years now. I also have fibro, sjogren's syndrome, and vulvadynia. I live in immense pain. I often daydream of life before this demon . When I feel good, I embrace it with all of my heart! I pray that someday I will feel 100% again, we all deserve it!

                          Medications:

                          Vicodin (as needed, so daily!)
                          Percocet (morning & night)
                          Klonopin (.5 mg at night)
                          Zanaflex (2 mg each night)
                          Thyroid med for low thyroid (hypo)
                          leuko-stim
                          Vitamin D (4000)

                          Diagnosis:
                          IC, CFS, Fibro (it is really bad it has taken so much from me and changed my life), Anxiety, Depression from it all, & Hypothyroid.

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