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Announcing our **NEW** ICN Blog - The IC UNDERGROUND A news service for IC patients!

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  • Announcing our **NEW** ICN Blog - The IC UNDERGROUND A news service for IC patients!

    Well, I finally did it. I decided that we needed a blog to store our new "daily" news stories, etc. etc. because it's cool... but it will also help with our search engine ratings.

    I'm calling it the IC Underground because I want it to reflect "more" than just the status quo and/or official announcements that we usually see. I'm going to be putting any new Jill's Journal articles in there... and I'm going to use it to reflect the more liberal tone of the IC Network. I rather despite the "conservative" IC movement because it's so constrained that they forget that there are real patients involved. Imagine going to a conference where patient care is rarely discussed. It's as if we're an afterthought. So, this blog will be more patient focused. Atleast I hope so!

    So, you can check it out at: http://www.ic-network.com/blog/

    All comments, questions and feedback welcome! I would have combined it with this forum but this current software doesn't yet allow that to occur. It should be coming soon though!

    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
    This is exciting. I have never blogged. Lately, I have been hearing a lot about it. I am not sure what it is or how you do it. -Vicki
    Blessings and Hope

    Current Meds.
    OFF MY MEDS
    Vivelle Dot: .10 changed every 72 hours
    Compoounded Progesterone 25mg/night

    Current Supplements
    Hydroeye: 2 pills AM

    Diagnosed
    1995: Endometriosis
    1998: Interstitial Cystitis
    2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
    2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
    2012: Laparoscopic Removal of Adhesions and Staples

    Comment


    • #3
      Lookin' good, Jill

      Vicki, blogging is like keeping an online journal; you just write down what comes to mind. You can have a main topic (like IC) or you can just talk about whatever's on your mind.

      Many sites have the capacity to allow you to create a free blog. MySpace.com, Diaryland.com, etc are good ones to start a basic blog, and it is SO easy. The sites guide you through every step.

      I blog at MySpace sometimes, although I've been a bit lax about it, and I blog about IC in particular at the RevolutionHealth site.
      ****
      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


      • #4
        Look's great Jill. As usual you & your team do a outstanding job.
        Thanks Sandra :woohoo:
        "Never Give Up."

        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

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

        Comment


        • #5
          Yay!

          How exciting! Just when the support couldn't get any better... It does! I am about to open my email and get my password! I am so blessed to have found you all here, and can't thank all of the administrator's and moderator's enough for all that they have done, to better serve the community for the purpose of understanding the numerous and complex issues that we face today. None of us would be here if it wasn't for their hard work, and compassion, and soo... :woohoo: and and to you all!!! I also look back, and realize just how much harder it must have been to find a diagnosis, the years prior to the millenium. Hence, all the respect in the world, and grateful thanks, to all whom have made I.C. the medically accepted condition that it is this day.. we are eternally grateful, and in fact, facing the possibility of remission only with thanks to such dedicated, heartfelt, determined individual's!!
          Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

          Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

          Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

          Comment


          • #6
            Jill, this is really great. I noticed the report on Detrol. Oh I know that medicine does do a number on me, but I don't really have a choice. I try to get off of it so many times and it just don't work. It's horrible when you have to make a choice in dealing with the side effects of medication or dealing with IC.

            But Jill it is good to know what we are dealing with so we can also try to make a way to handle it.

            Thank you so much, Trishann

            Comment


            • #7
              I really like it Jill, keep up the great work.
              Jolene

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

              Information for Patients can be found here.
              http://www.ic-network.com/patientlinks.html


              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel 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
                I know blogs have become an extremely powerful movement in the USA, and could be great for the IC community. Will the information on the blog be totally different from what is put on the ICN website? I understand Jill's announcements will now be on the blog. The main reason I was asking because the ICN already provides a tremendous amount of high quality life changing informtion, so people shouldn't miss any of it. (It is hard for some of us to sit at the computer for any amount of time.) Until the blog is merge with the message board, how will the newsletter and this differ?

                What does the title "Underground" mean? I thought perhaps it was suppose to be a secret board, but everything appears to be open without membership. Will things that wouldn't be appropriate to discuss with ones doctor or the medical community be on this blog?

                I am sure it will be great and help patients. It will be an exciting to watch this concept develop for IC.

                ads

                Comment


                • #9
                  This is terrific but I'm really about to put a hole in my wall...

                  Umm...visions of struggling with high school chemistry and learning to respackel (sp?) wallboard after a 10 pound text book got hurled at it are coming back to me....I've been trying for three days to get into to this new "cyber place" and I'm either struggling with new pain meds or just plain stupid. I got the funky password (the temporary) and attempted at least 20 times to get in with that...finally it suddenly let me in...why? I dunno...?Maybe it felt sorry for me. So I filled in my profile and I got to where I could change my passcode and I did (b/c there is no way in heck I would remember that jumble of letters and numbers.) It kept bringing me back to the profile page with the passcode I choose erased, no rhyme or reason..it was just erased. so I finally ignored it and i went into the first page (after all, it did say HOWDY...) once there I tried every opportunity given to go to a webpage and it just kept telling me I didn't have adequate clearance...to even go look at my "web"page and see how I wanted to set it up or join in a blog. What am Idoing wrong...I would like to do this to distract me from all me other issues going on right now,,,,

                  Thanks...\\
                  I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                  Medications I CURRENTLY take:
                  90 mgs Ms contin (45 mgs Am/PM)
                  Percocet as needed
                  Topomax 100mg day
                  Ambien 10 mg bed
                  desipramine 25 mgs




                  If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                  Albert Einstein

                  Comment


                  • #10
                    There are issues with the blog software right now I think. I'm still figuring it out... so please be patient with me.

                    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.






                    Comment


                    • #11
                      Ok....I saw every one else was successful and thought I was just being a goof somewhere. (and it was 12:30 am and I was in pain) I wasn't "hollering" at you...just frustrated because everthing is going upside down right now and NOW I can't even get a website to open...Grrr. Thanks much for your work on this!
                      I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                      Medications I CURRENTLY take:
                      90 mgs Ms contin (45 mgs Am/PM)
                      Percocet as needed
                      Topomax 100mg day
                      Ambien 10 mg bed
                      desipramine 25 mgs




                      If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                      Albert Einstein

                      Comment


                      • #12
                        Can you make one of your topics pain management....and how do get comments that we've replied to show up. (I replied today to the Detrol one a couple of times but it kept showing up that no comments were made) And if it's because of problems with the sight that's cool, I'm not a website guru by any means....ha!)
                        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                        Medications I CURRENTLY take:
                        90 mgs Ms contin (45 mgs Am/PM)
                        Percocet as needed
                        Topomax 100mg day
                        Ambien 10 mg bed
                        desipramine 25 mgs




                        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                        Albert Einstein

                        Comment


                        • #13
                          yeah

                          haha... yeah, i was really excited too about it, and then I got my password and it wouldn't let me in either... After trying it a few times I figured it was just me, or an error in the creation of the page..I don't know much about computers and webpages, but if you need any help working through it, my boyfriend is a Computer Database Administrator, so I am sure he would be able to help on this one.. so just let me know.. if you'd like me to ask his advice.. thanks again for everything!!
                          Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                          Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                          Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                          Comment


                          • #14
                            This seems really exciting, but I have never used a blog before. I am not really sure what to do but I must say that I really like the banner at the top of the page. Hahaha I know thats sounds odd, but I think it is sleek and pretty...but relaxing.
                            IC Awareness

                            Comment

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