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Is Facebook a good place for IC support?

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  • #31
    i havent been brave enough to join an ic facebook group yet. from what ive seen theyre pretty cliquesh..really dont know where i fit in with this.anytime theres a bunch of women theres bound to be drama/people who dont like each other.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    tramadol-allergic
    DMSO treatments(5-6)
    probiotics

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    Add me on facebook Angela Hasic

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

    Comment


    • #32
      I think it is personal preference

      I have been reading the posts about why people do not share information on facebook and I understand your concerns and I can see why you don't want to. I have used facebook since it was originally for college kids and as long as I set all my privacy things I don't worry about the wrong people seeing my information. I use to connect with my family that is all over the place and also friends and even classmates I have lost touch with. I never used to share my medical conditions on facebook and my friends never knew how sick I truly was but then I started getting questions so I wrote notes here and there mostly about my neurostimulator and it helped people understand my situation. I also started talking about my IC not in great detail but because I was in the hospital and again there were questions. In a way, I am glad I finally posted about it because it helped me not to be so embarrassed or feel so ashamed about IC or other conditions. I also like to keep people informed that they should always be pro-active in their health care and not rely on their doctors to always be right. I do post about bad medical experiences but never any names or anything like that, my thinking is that I would rather keep people from experiencing the same bad situation I have gone through. I think if you want to use facebook to talk other people who have IC just use messages if you don't want everyone to see it, because if you post on the wall then everyone sees it. I also think that the more support you can find will help you deal and cope with your health problems/conditions better. Sorry it turned out so long but I wanted to share my thoughts on it.

      Comment


      • #33
        To answer the subject line in 1 word - no. I love facebook but it has limitations for sure, especially for me because I've added co-workers to my friends list. I have to be VERY cautious about what I post.
        When I first got it, I wrote 1 thing about IC and that was "I met another person with IC today!" I got questions about what IC was. And then, it was weird describing it in 1 line to friends I hadn't seen in 10 years. So, I never really wrote anything more about it.
        I much prefer this site because of the privacy.

        Comment


        • #34
          FB is for enjoyment, hooking up with old high school friends, keeping up with people that you you don't talk to everyday. You don't really want to discuss certian things on FB, unless it is a page for it. I would rather post whats going on with me here then there. Why? Because we all have the same thing wrong, or people here on the icn are supportive, and want to try to help whereas FB its just not that comfortable to do.
          Also my FB isn't where I want to discus my IC. I need that outlet that does not involve my IC.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #35
            I am on Facebook a lot. I also have 2 accounts. One is for those people who I know in real life. It is a way to make contact quickly and not have to make a phone call to do so. I use it as a form of E-mail. IC is never mentioned there unless it is a private message to a person who knows about IC because they are very close to me. I have used it for IC Awareness to those people.

            My other account was created for IC. I wanted a place where most everyone had IC and other related conditions. I also wanted a place where I was not a Support Leader and did not feel I had to do Support Leader stuff...just be an everyday Jane...,but where I could offer support sometimes, but mostly just a (((hug))) and a "I understand". Although, I must confess that the Support Leader comes out now and then. That is when I wish I could do something about the argumentative, ugly posts, and profanity like I can here. I have actually found myself looking for my delete button. Habits are hard to break...LOL

            I also use 2 different profile pictures of myself on the 2 accounts. I use the Profile Picture you see here on the ICN for the "IC FB" so people might recognize me from here. My other Profile Picture has me in shadow. If you did not know what I look like you could not figure it out very clearly with that picture.

            As far as confidentiality, like here on the ICN, I do not use my last name like most everyone else does on FB for privacy reasons. I do not have much personal information listed at all. I was very careful not to do that.

            I do believe that both methods of contact have good things about them. Here, we can ask questions about the condition we all suffer from, get some great information from everything Jill has made available to us and those who have history with this disease, help others, especially newbies, and be a comfort to those who are suffering so badly with something we understand without have to ask questions.

            On Facebook, we can get to know people through the personal things they post, like pictures of trips, family members, etc., but still have the connection of having IC.
            It is always fun to see the personal side of those I have originally grown to know here on the ICN. It kinda completes that connection.
            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


            • #36
              FB seems to be a good place to connect to IC peeps.

              I find lots of Fibro patients on Twitter, but Twitter seems to lack IC promotion ( I am slowly but surely TRYING to change that )

              But for now FB seems a lot more active with IC people who post openly about it.
              DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

              Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

              My Pelvic Pain Blog

              FB Fanpage for My Pelvic Pain Blog

              Comment


              • #37
                I post on FB I will talk about the fact that I have IC...and I will post IC articles in an informational way or have casual conversations about it.

                But I don't post in graphic detail on there like I would on here about personal treatments, odd habits and rituals I have for my pelvic pain management etc.

                I have had people private message me desperate for help...people who have not found a forum like this and I am happy to be more personal or direct them to other resources.
                DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

                Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

                My Pelvic Pain Blog

                FB Fanpage for My Pelvic Pain Blog

                Comment


                • #38
                  Just to add

                  I would love to "friend" anyone from ICN on my FB. Right now there's not a whole lot of interesting things going on and I can tell you that I don't really discuss IC there as I'm "friends" with lots of different people including ppl that work for my husband, who would try, but just wouldn't understand. I come here for IC support. But if you would like to friend me on FB I'd love it. You can see the pictures ofmy baby/Yorkie. And it would be fun to get to know you better. Just let me know you're from ICN and I think it would be great!!! (Katie Barnes tx)
                  Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                  Lexapro-20 mg
                  Aciphex
                  Ambien-as needed
                  Percocet-7.5 up to 3 per day as needed
                  Valium-10 mg x2 per day
                  Phenergan-1 at night
                  Prelief w/everything
                  Now recovering from acute pancreatitis

                  Currents treatments that help somewhat:
                  Heating pad
                  Hot baths
                  Ice
                  Being VERY still while lying down with legs elevated

                  Comment


                  • #39
                    Facebook --- not so good

                    What I don't like about facebook is the lack of privacy. A lot of my "friends" on facebook are actually people I work with. I don't want them to know when my pee is orange or if I had to go to the bathroom 50 times per day. I feel much "safer" and more open to share in a more private setting, like right here.

                    ~~Heidi~~
                    My issues:
                    Adenomyosis -Diagnosed 2010
                    Fibromyalgia - Diagnosed 2009
                    IBS - Diagnosed 2007
                    IC - Diagnosed 2003
                    Endo - Diagnosed 1998
                    Cystic Acne
                    Migraines




                    My meds:
                    Elmiron orally 100 mg 2x per day
                    Effexor 75mg 1x perday
                    Welburtin 150 mg 1x per day
                    Maxalt (as needed for migraines)
                    birth control pills


                    Comment


                    • #40
                      Honestly, I've never participated in IC Network discussion on Facebook because I don't want to "come out" as having IC. My network on Facebook includes hundreds of professional colleagues; friends from elementary school, high school and college; and extended family. I don't want them all to know I have IC - and frankly, I don't think most of them would want to know, either.

                      Comment


                      • #41
                        It seems like the general consensus is that people don't want the general public to know they have IC, yet when I posted about being "outed" to people I didn't want outed to everyone said I overreacted...
                        ~Ashley

                        Comment


                        • #42
                          For me, I wouldn't say that my having IC is something that I don't want people to know about. It's more like I look at IC as something I have, and even though at times it can have a huge impact on my life, IC isn't me. So I'd rather it not be used to describe me, on Facebook, or in the real world.

                          Certainly if my IC has the possibility of impacting someone else (like a car trip?) I will offer a brief explanation and give fair warning of what may occur. I guess I share any health issue on a need to know basis, and I feel most people just don't need to know. -And probably don't want to know either.

                          Vicki
                          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                          Comment


                          • #43
                            I guss I don't want to be "outed" as having IC because I'm so tired of trying to explain it!!! If it were to go out on FB, I can imagine my inbox full of emails saying "Whats IC"!!! I'm done with the explanations to people that are probably not gonna get it anyway!!! I may not be the best "explainer" of all times, but it's exhausting!!!
                            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                            Lexapro-20 mg
                            Aciphex
                            Ambien-as needed
                            Percocet-7.5 up to 3 per day as needed
                            Valium-10 mg x2 per day
                            Phenergan-1 at night
                            Prelief w/everything
                            Now recovering from acute pancreatitis

                            Currents treatments that help somewhat:
                            Heating pad
                            Hot baths
                            Ice
                            Being VERY still while lying down with legs elevated

                            Comment


                            • #44
                              I have deleted my facebook account, as it was a waste of time for me. Since then, I have been meeting more friends face-to-face, which does take a little more effort, I must admit, but is much more gratifying. That said, I am thankful for ICN format about the rather private subject of IC that I would never discuss in a public forum like Facebook.
                              When the world says "give up," hope whispers "try one more time."
                              Diagnosed in 2010 by cytoscopy with hydrodistention after 1+ years of searching for answers and seeing multiple physicians. Finally was referred to urogynecologist who made the diagnosis.

                              Medications tried, but did not work: Elmiron, Elavil, quericitin, aloe vera, cystoprotek.

                              Current medications/supplements: Lyrica, Ativan, Prozac, Prelief, marshmallow root, calcium plus magnesium, Ester-C -- this cocktail seems to keep me 80% plus controlled.

                              Diet does help too, but not without medications.

                              And, I drink low-acid Kava coffee without a problem.

                              Comment


                              • #45
                                App?

                                I agree, many of the IC communities on Facebook lack much needed control, which in result leads to inaccurate information and therefore, alarming circumstances.

                                However, I wish there was a ICN Forum app so, this IC community could be more accessible from my smartphone.
                                Tierney
                                Message me and add me http://facebook.com/tierneybrielle.

                                Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

                                Do you have a question? Feel free to ask me anything; I am an open book!

                                I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

                                Comment

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