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  • Whew!!! It's been a big week in our office!

    Hey folks... Just thought I'd fill you in on what we've been up to for the past month!

    (1) We've just finished our Spring IC Optimist which, you can see in the left hand column in the boards, is a gorgeous picture of a woman with green eyes. Why do I select younger women?? Because that's our market. IC is not a disease of post menopausal women. It affects younger men and women in their teens, 20's and 30's and, simply put, we're trying to change the image of IC.

    But I'm very proud of this issue for it's content. We've featured an extensive 8 page interview with Dr. Moldwin, the author of the IC Survival Guide. Stacey Shannon, our IC writer extraordinaire, has written a lovely article on Eosinophilic cystitis! Frannie Rose offers an excellent column on coping with pain and, wait, there's MORE!!!

    So, if you like the IC Network and would like to support our efforts, we hope you'll consider purchasing an ICN subscription and/or individual copies of our newsletters. We work so hard on them!!! Enjoy!

    (2) Please Understand - The IC Guide For Couples is now available!! Yahoo!! We've just received our first order of 80 copies and they are now available in the ICN Shop. Many of you should remember this from our IC conference last summer and fall when the authors, Gaye & Molly, gave a lovely lecture on our website!!!! In any case, it's very affordable at just $11.99!

    (3) Our Top Secret project, a brand new book on IC, is nearing completion !!! The only hint I'm going to give you is that the artwork is FABULOUS!

    (4) The new ICN Shop (http://www.icnsales.com) , with a brand new shopping cart, should be available for purchases in... ***gasp**** a week! This after nearly a year of testing software, servers, plug ins and the like! Yowza!! OMG, you would not believe the headaches this has given Janice and I. Oh, the drama!!! In any case, it will feature many new features like your recommendations and reviews of products, best sellers and more! Whew!

    Oh gosh!! There's more but that's a good start. That's why you've seen much of me on the boards!

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    Wow Jill, it really does sound like you've been busy. I am very excited to be getting my first IC Optimist in the mail. I just joined and got my welcome packet last weekend. The Special Report on Pain is great and I've been wearing my IC awareness bracelet non stop! Thank you for doing so much for us around here.
    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
      Hey Jill, ever thought of adding paypal as an option for checkout at the ICN store. It is so muich easier if you don't want to use a credit card to use paypal with checking acct info. Just a thought.

      Comment


      • #4
        Thank you for all your hard work!

        Jill,
        Thank you for all of your hard work! All of the items sound like winners.

        I do have a question about subscriptions and being what is it called an angel contributor? How do we know when it is time to renew? Do we get an e-mail or a letter in the mail? I can never remember when it is time.

        ads

        Comment


        • #5
          Thank you.

          Jill - I just want to say "thank you" for everything that you do! You are my new hero. I also recently joined and received my subscription packet in the mail. When I opened the packet, I suddenly felt like I was no longer standing alone. I felt like I was standing together with a community of courageous women and men.
          Thanks again to you and the rest of the IC community...linda
          Last edited by lan; 05-03-2007, 03:53 PM. Reason: spelling
          Sudden onset of UTI like symtoms on Dec 27, 2006.
          Diagnosed with IC on March 12, 2007.
          Current Meds: 50mg Elavil
          "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

          Comment


          • #6
            Hi Jill. Thank you for your hard work. Just one thing= 20's & 30's turn into 40, 50, 60, and more. Ziggy

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            • #7
              Whew!!! What a week for you!!! Seems like weeks from heck are going around.... but I'm so proud of you and the rest of the ICN staff for doing all this stuff for us
              ****
              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


              • #8
                Jill or someone, how do you join to get a subscription? Please let me know. Thanks.

                Comment


                • #9
                  subscriptions

                  Mary - just scroll up to the top of this page and click on NEWSLETTERS & SUBSCRIPTIONS. On that page (you have to scroll down a little) you will see the subscription options (angel, gold, silver). Hope that helps...linda
                  Sudden onset of UTI like symtoms on Dec 27, 2006.
                  Diagnosed with IC on March 12, 2007.
                  Current Meds: 50mg Elavil
                  "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

                  Comment


                  • #10
                    Question about paypal.

                    You know, the problem with paypal is that the seller is greatly disadvantaged which is why there are so many problems over on ebay right now. Basically, someone could order $200 worth of products and then claim, through paypal, that they deserve their money back because the products didn't arrive. And, even though we have proof of delivery, we still LOSE.

                    The other issue with paypal is that when someones account is based upon a bank account, that account isn't checked for overdrafts, etc. Thus, if they place an order for $50... and even though paypal approves it. When paypal tries to obtain the money from their account, it's empty... then we get the chargeback EVEN THOUGH they approved the transfer.

                    So... there's just no way we'll go to paypal. It's not worth the headache... but we may go to the new google service.

                    Also... FYI... we were just royally ripped by a German sale who ordered items... then picked the cheapest form of delivery.. which also happened to be untrackable. They then requested a charge back to AMEX who asked us for proof of delivery but, of course, the customer picked shipping without tracking. Soooo, we're only going to ship Global Express Internationally now. It's much more expensive but, honestly, I'm not going to take another $200 loss for what is clearly a conman!

                    You should see the stolen credit card orders we get... you'd be amazed at the african scams out there. Each month, I end up doing a CODE 10 stolen credit card alert with our Visa/MC provider. It's just sick that so many people have stolen identities. Luckily, they are very obvious... because they request products to be shipped to Africa and they also usually order like 20 of single items. I think the scammers just surf the net looking for stores once they have a stolen card.
                    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                    Comment


                    • #11
                      Wow I had no clue that people would try to fraud this site, with such distinct products. THat is just wrong.

                      I didn't realize the headache you had to go through to do paypal. My mistake for asking I really didn;t have a clue.

                      Comment


                      • #12
                        Thanks again Jill to you and the IC staff , for all you do for us!
                        Hugs Sandra
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

                        My Photobucket Link:
                        http://s237.photobucket.com/albums/f...ramack_photos/

                        Comment


                        • #13
                          Thank you Jill for everything!


                          Kara
                          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:
                          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

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