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Is Facebook a good place for IC support?

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  • #16
    I also love this site. But sometimes when I post here it takes a while before anyone responds. I do love everything that Jill and all of the other support people do

    Comment


    • #17
      I love Facebook & have met online quite a few women who have IC. We still keep in touch, though it is thru private messaging. All my friends on FB know of my disease & I will post when I am in alot of pain, just to get some cyber hugs:-) I personally feel that thanks to FB I was able to make some friends with the same disease as me & keep in touch.
      Karen
      Currently Taking:
      20 mg Celexa
      fentanyl patch 12.5 mcg chgd every 3 days
      morphine IR 15 MG, up to 3x daily
      Xanax 1mg as needed (not taken daily)
      900 MG Oxycarbizine (mood disorder)
      300 MG Welbutrin
      Tizanidine 4 mg up to 20 mg daily as need
      Prevacid 30 mg
      Ambien as needed

      my heating pad is my best friend, use daily on my lower back & pelvic area
      blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

      Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

      Comment


      • #18
        I got onto FB because a friend from highschool talked me into it. And, it's a great way to keep in touch with my family since we're in the navy, currently stationed over 2,000 miles away from everyone I know. Then I started playing games.. then I ended up with friends from all over the world lol But, I also used it to talk to other people about my endometriosis in groups over there. And, I managed to inform other ppl who were/are struggling with it. And, turns out, a friend I made on FB through an endo group and I both have IC. Diagnosed just a few months ago after we had endo surgeries with a top specialist a month apart. If it wasn't for her, I would have lost my mind dealing with all this alone. And she says the same thing about me

        I believe information is key. I'm not going to believe some random person in a group just because they say whatever is true. I have to go out and find out for myself (which is how I found this awesome place). But, I know a lot of ppl will believe anything.. so I like to inform and help whenever I can over there.

        And, I do talk to my friends on FB about my endo and IC (a lot of them are awesome cooks and have helped me cope with the diet). I get some awesome support, and even found out that maybe half a dozen ppl who were just game friends have endo and/or IC too.

        And the crazy thing.. my mom has just gotten onto FB within the last yr.. and she'll see my posts and then tell me she had no idea the pain was so bad, and how sorry she is that she never knew. The other day she told me "That IC thing sounds horrible! And I thought my MS was bad; sounds like you have it worse!" Wow. Ironically, FB has brought me and my mom closer.

        Comment


        • #19
          This is a conversation you and I have had over the last couple of months Jill, and I totally agree with you. I have personally changed the way I respond to people on the IC Diet facebook page, providing only general tidbits and advertising my book or pointing to interesting articles. In fact the American Dietetic Association has issued a concern about those type of social media in fear that interchange between "patients" and clinicians of one sort or another is a violation if HIPAA confidentiality laws....HIPAA regulates the electronic transmission of health and insurance data. Very scary from a provider standpoint....there are nurses, dietitians, physicians, psychologists, physical therapists etc who could be putting their credentials on the line.
          As for myself, I visit facebook a couple of times a day, but always make it a point to check in here. This is where I began.....this is where I feel safe posting the most personal stuff.

          <3 Julie
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author


          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........


          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter


          *Let's Connect!*

          Comment


          • #20
            Personally, i would not feel comfortable posting anything about such a personal medical condition on Facebook because it is too public. I don't have thousands of Facebook 'friends' as many people do, but even so, my 'friends' include many work collegues whom i would not want be reading things about my IC. It's just too public for me at this stage of my life. I recon in time though, when my career is not such an issue, i might be in a place in my life where i feel comfortable enough to publicly talk about IC. I support anything that can help raise awareness for IC because the more people know about it, the easier it might make things for all of us in time. Right now, Facebook would not work for me, but i'm sure many other people would find it valuble for communicating and sharing ideas with other ICers. As always, thanks for all your effort and support Jill <3
            I've just turned 27 and Dx with IC in Sept 09- Never had a single UTI in my life! My symptoms came on very suddenly and include frequency, urgency and a lot of pain and abdominal swelling. My cysto/hydro showed extensive areas of bleeding in my bladder.

            Tried: Detrol, Oxybutinin, Lexapro, Codeine, Elmiron, Pyridium, Tramadol, Meptazinol, Temazepam, Diclofenac- all did nothing. Weekly Heparin/Marcaine instills and vicodin gave short periods of relief.

            Currently:
            *Strict IC diet- really helps control my frequency
            *OxyContin helps my pain- i am so grateful!
            *Heat patches- love them! since i can't sit in a hot bath all day- though i would if i could lol
            Weekly Cystistat instills- don't seem to be doing much
            Hydroxyzine (Atarax) before bed
            Just learned to do home rescue instills- heparin/lidocaine/sodium bicarb as needed

            "Every star is made brighter by the darkness surrounding it"

            Comment


            • #21
              I would say no because you don't want your social life on FB. There are people I know that have no ideam of my medical conditions, and I don't want everyone knowing. Say I wrote on Tracy's wall, who ever Tracey's Friends can see it, if Marg, Tracy and I are talking in a wall post who ever is there friends knows our business. Hope I explained that right. Thats why 98% of the people on my FB do not have IC. If we are friends and have IC they are on my FB. I just think some things have a limint
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #22
                I use FB to keep in touch with friends, check out their pictures, chat with people I rarely get to see. I do not post day to day info on there. I would never post my medical info on there. I feel it has pluses & minuses like anything else. Thanks for always looking out for us Jill!

                Comment


                • #23
                  I use facebook alot. I go on most everyday but wouldn't even think of facebook for support or chat or advise for my IC. That's what I come here for

                  Comment


                  • #24
                    I agree that FaceBook is not the place to discuss private medical issues. I am much more happy coming to a special website such as this for that type of thing.

                    I would never post the things on FaceBook that I post here, or on the MS site I belong to. Everyone on my FB list doesn't need to know/see those things. Most people on FB don't even know that I have IC or MS and that is the way I prefer it.
                    Colleen

                    * ITP - autoimmune blood disorder - spleen removed 1978 and in remission since
                    * MS- diagnosed Jan-2010
                    * IC - confirmed by cysto and hydro Nov-2010 - currently taking no medication
                    * possible adenomyosis - suspected by urogyno May-2010
                    * low Vitamin D levels - taking 2000 IU daily
                    * sleep issues - 1/2 alprazolam

                    Comment


                    • #25
                      Not only am I worried about misinformation being spread, or people's mental health issues not being addressed properly, I have seen soooooooo much SPAM on facebook for a variety of products and all of them that I have seen, so far, could really hurt an IC bladder.

                      At least here we have the moderators to try to catch those things and delete them. It is very hard to monitor on FB..............
                      Julie Beyer, MA, RDN
                      IC Dietitian, Patient Advocate, Speaker, & Author


                      Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                      Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                      You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                      ........ ........


                      Other IC Diet Resources:

                      IC Diet Webinar
                      IC Diet Website
                      For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                      Free IC Diet Booklet: What Can I Eat?
                      Confident Choices IC Diet Blog
                      IC Diet Newsletter


                      *Let's Connect!*

                      Comment


                      • #26
                        Face Book

                        Hi
                        I just had to chime in and say that I completely agree with Donna and others who feel that Face Book is okay for fun browsing and saying hi to friends and relatives, but that's all.
                        I don't have my picture on there, and no one has posted any pics of me, my profile is brief and I am super careful about what I say.
                        I think it's an okay site if you know what it's about and what the potential problems are, but, IMHO, it's not a place for discussing really personal or even politcal issues.
                        BTW, there was a very interesting show about Face Book on CNBC last night, saying exactly what some here have said. Fun site to play with, but privacy is NOT well protected. They told about one woman, a teacher, who either lost, or might loose her job because she said some inappropriate things about teaching and the kids, etc, on FB. She was "talking" to some friend, I believe,(I only caught part of the story, sorry), and somehow the conversation got out to where it was not intended to be, and was read by many people.
                        I guess everything cyber has it's good and not so good points-except for this support forum, which is wonderful!
                        Laurie

                        Comment


                        • #27
                          I wouldn't use Facebook for anything related to ICN. In the past they've made changes to their privacy policies that are opt-out, meaning that new options are created that have sometimes revealed things to do with privacy that I would not have knowingly agreed to reveal. It's hard to keep on top of these changes that they make.

                          I sometimes receive invitations to things (not IC-related) and those invites can only be opened in Facebook. So I find it necessary to have an account. But I don't like it, and have learned not to trust it.

                          I'm not interested in reading (or exchanging) any info from ICN within Facebook.

                          And I'm not comfortable with the idea that anyone might be able to Google or Facebook their way to information about my health / medical condition.

                          I would rather that we brainstorm ways that we can improve 'social networking' aspects within the ICN site, if needed, or ask members what experiences they have within Facebook, that might add to their online experience in ICN.

                          My two cents.
                          ______
                          Severe IC developed fairly quickly, autumn 2010.
                          So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                          - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                          - Methadone 9 ml/day
                          - Instillations:
                          - 40ml Kenalog (steroid for inflammation) 2 x per
                          week, along with rescue cocktail of heparin,
                          lidocaine, sodium bicarbonate
                          - 20ml Uracyst, monthly @ $100/per
                          - Depo lupron injections for endometriosis, monthly @ $88/per

                          Comment


                          • #28
                            I just re-joined facebook last weekend and I love the updates from the ICN. I don't tend to come here everyday (and often I just check the threads I already posted in that I got e-mails that there were new posts in). I think it's going to be a great way to keep up with actual IC news. I added a couple of people from the board too...I thought it'd be a good way to keep in touch. I wouldn't post anything private about IC though (or any health issue), I'd send it in a private message. I have my privacy settings so that no one can see anything about me except my friends, but I know people find ways to do it. All of my friends on there already know I have IC or I don't care if they know. I don't know it's just part of who I am...I want to be a nurse practitioner and treat people with IC, I should be able to talk about having IC. It has been difficult for me in the past when people have found out who I wasn't comfortable with knowing (like my boyfriend's parents), but I can control who sees my facebook, so it should be fine.

                            Everyone is entitled to their own opinion of course.
                            Last edited by LithEruiel; 03-10-2011, 12:56 PM. Reason: adding more
                            ~Ashley

                            Comment


                            • #29
                              And I was just invited to yet another IC group on facebook. I have to say, if IC wasn't my business (selling the books) I wouldn't have anything at all on there about IC. I just wouldn't want to talk about it that much.

                              Recently a patient wrote to me about all the negativity on the facebook groups. She was distressed, but thanked me for my positive outlook. I sent her hear. You should have seen how happy she was to find us!! :-)
                              Julie Beyer, MA, RDN
                              IC Dietitian, Patient Advocate, Speaker, & Author


                              Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                              Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                              You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                              ........ ........


                              Other IC Diet Resources:

                              IC Diet Webinar
                              IC Diet Website
                              For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                              Free IC Diet Booklet: What Can I Eat?
                              Confident Choices IC Diet Blog
                              IC Diet Newsletter


                              *Let's Connect!*

                              Comment


                              • #30
                                Oh, well I guess I should clarify I'm not in any of the groups I just liked and joined the ICN and ICA...that's too bad that there's a lot of negativity on there.
                                ~Ashley

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