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  • #16
    It does very much concern me that there are those who are in need, but are hesitant to join an unknown website and might miss all the info, support and affirmation these boards supply. I was one who lurked, read and learned for almost a year before I got up the nerve to even register and it took a lot longer for me to begin posting. If the boards had been blocked when I was a newbie, I would not have joined so I could see if there was anything of help to me inside. I would have just kept on searching and would have missed out on all the wonderful friends, support and benefits available here.

    With that said, I have to agree the safety of all must be of paramount importance. I'm sure you have carefully weighed all the factors, Jill, even those that are not apparent to all of us, and have made the best decision. Yes, it's inconvenient that I must log in if I just have a minute and want to quickly check the boards, but that's such a minor inconvenience and one I gladly accept to keep every treasured member of the family here as safe as possible. Thanks for caring so much about all of us!

    Ulcerative Colitis and IBS
    Pelvic Floor Dysfunction

    Retirement is great! Work is highly overrated!!!
    ---My dear hubby

    Never go to a doctor whose office plants are dead.


    • #17
      The Internet is like the Wild West -- no one is in actual control, and it can be very dangerous out in the ether. I say this as a computer scientist; security is not my area of expertise, but it is my husband's, and he was relieved to hear of the measures that Jill has taken.

      Given that registration is free, I don't see this as a huge barrier to people seeking information. I'm not clear on exactly how you intend this to work. If you're saying guests would have to register and sign in, wouldn't that just mean you're setting a "no guests" policy? Or is the plan to require something less than full registration as a member?

      It would be possible to make ONLY the names of the sub-forums, the number of members, and a few sample posts visible to guests, but it would take some work. Well, quite a bit of work, really. Let people sign in. It's not that hard

      Thanks, Jill, for continuing to make this a safe space for all of us. My heart goes out to whoever it is that was being stalked.
      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
      Wishing you happiness and good health, and all the best out of life.

      Peace, Carolyn

      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

      On the Beach with IC


      • #18
        From the number of registrations I have processed today, I would say that the "guests" are registering. Hopefully they will become active members. It's always good to see new people.

        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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:


        Diet list:

        AUA Guidelines:

        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.

        Anyone who says something is foolproof hasn't met a determined fool


        • #19
          Annie I agree with you, I lurked to for a while. but, if they really want to read they will join.. kinda like if you build it they will come.. lol.. oh boy I think the pain meds are kicking in... sending cyber grandma huggies,
          'The will of God will never take you where the Grace of God will not protect you.'


          • #20


            This is great! I love the security.

            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


            • #21
              I totally agree this is the best policy for the safety of each and every one of us. No doubt about it, safety concerns (along with legal issues) really MUST come first. I just wanted to express my concern new people might be put off by not being able to see what the boards are about and, therefore, not join in this caring sanctuary designed for all. I'm glad to hear so many new registrations are coming in!

              Cyber Grandma sends great big hugs back! Guess I really should have picked Grandma Wannabe as my screen name.
              Last edited by Annie2; 02-15-2007, 05:55 PM.

              Ulcerative Colitis and IBS
              Pelvic Floor Dysfunction

              Retirement is great! Work is highly overrated!!!
              ---My dear hubby

              Never go to a doctor whose office plants are dead.


              • #22
                This is a good idea, especially because someones safety is involved.
                Hopefully, it will also encourage more people to post now that the board has been made more private
                IC Live Journal


                • #23
                  Thanks Jill for your wise concern.


                  • #24
                    Thanks Jill! Keep up the good work...



                    • #25
                      Jill- Thanks for your concern for all of us.


                      • #26
                        Great idea, Jill. It makes me feel safe! Thanks!

                        Meds I take:
                        Elmiron, Elavil, Vagifem- for IC
                        Albuterol, Flovent, Atrovent- for Asthma and lung problems
                        Paxil, Clonazepam- for depression and Anxiety
                        Atenolol- for rapid heart rate
                        Nexium- for Gerd
                        Levothyroxin- for Hypothyroidism
                        Lasix, Pottasium- for edema
                        Lipitor- for High Cholesterol
                        I coated aspirin
                        02 at bedtime


                        • #27
                          i know some people were sayig it was hard for them to get on here,and that it took awhile.i have this website on my favorites,so all i do is just click favorites,scroll down to the message boards,and click,i'm on in 3 seconds.didn't know if anyone wanted to try that.


                          • #28
                            whoops one more thing,i have never had to even log in this way,i guess i am just always logged on,but,i can be on in seconds


                            • #29
                              Great move, I guess I just don't understand people out there enough who really want to hurt someone else. That just blows my mind.
                              Kat's current Medication:

                              Flomax .4mg pm
                              Celebrex 200mg in pm
                              Singulair 10mg in pm
                              Nexium 40mg am and pm
                              EstratestHS .625mg every day
                              Tramadol HCL 50mg (for pain)
                              Albuterol (asthma)
                              Bladder Installations:
                              8.4% Sodium Bicarbonate 10cc
                              Marcaine 0.5% 10cc
                              Dexamethasone Sodium Phosphate 4mg 10cc
                              Heparin Sodium 4mL

                              Therefore I say to you do not worry about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food and the body more than clothing? (Matt. 6:25)


                              • #30
                                Again Jill & the ICN team , Thanks for all you do for us !
                                Hugs Sandra
                                "Never Give Up."

                                To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

                                My Photobucket Link: