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  • How has the internet/ICN helped you?

    I am taking an advanced presentation strategy class this fall I would love to do a presentation on how having this community and having the internet has helped you in your life with IC.

    For me, I can think of moments when I was so despondant that I wanted to put holes right thru the walls, and I came online...........the support was definately life changing and possibly life saving.

    I also can say, that there are friends I have met from here that fill my life with such joy, I can't imangine them not being there.

    Ok, I want YOUR story though, the talk can't be about me personally, but about the general idea of internet HELPing people.

    Thanks in advance!
    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!*


  • #2
    Julie B......first of all.....I MET YOU!!!

    No, but seriously. Ive made friends. Friends who understand what Im going through. Thats important.

    I think one important thing to mention is that with IC, the treatments are not black and white and are VERY individual. Although a doctor can help us work through what treatment options are available to us, it is often helpful for ICers to have a reference of others that have tried that treatment. It can help you through the decision process-- and weed out whats helping, whats not, what causes what side effects, etc etc.

    I think what you mentioned-- crisis moments, the ICN is always here-- thats key.

    And also just a forum for expressing our feelings. Its tough to live with a chronic disease. Most hospitals have diabetes support groups, etc etc. IC is not as common, so we meet here. And it reduces stress levels. Well, mine at least!!

    I can also say personally that I find it gratifying to be able to (hopefully) help others in their moments of crisis.

    I hope this helps you!!
    BIG hugs,
    Rachel
    @[email protected]
    "Well the Secret O'Life is enjoying the passage of time." ~James Taylor

    Comment


    • #3
      Well the internet helped me to find this site. I need to find some support. There aren't any groups in my area. No one knew what I was going through.

      So when I stumbled upon the ICN, I lingered as a guest for awhile, not sure if I anyone really knew what I was going through. And then after reading some posts, I registered, and realized that everyone knows what I deal with--since you all deal with it too.

      That's how it helped me. I made friends that understood me, and are here for me when I need support most.

      Hugs,
      Jess
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

      Comment


      • #4
        Hi Julie, this board was here when I was diagonesed for the second time in 98 and went through a bad time and then went into remisson. When I got a diagonsed again 2003, I found the icn again and registered. It has been such a great support for me and it helps me to help others out with the same disease. I have learned new things and made friends on the net and they are real and true to me. I have even called a couple of them. I know a couple personally from her via email and phone calls and support groups. I am lucky I do have an ic support group a half hour away from here which meets once a month and it helps. The interent is really good for researching and reaching out for help. this is a God send for me. I hope your paper gets an A. Thanks for asking.
        Hang in there , There is hope.
        There is hope. Prayer works.

        Love, Debbie

        Comment


        • #5
          The internet helped me a lot, as when first diagnosed, I asked if there was a support group in the area, and there was not, so I turned to the internet. Found this site and knew that this is exactly what I needed, information about my disease, people dealing with the same problems that I had, different ways of helping with the stress of living with IC and most of all a support group of caring, loving people who knew exactly what I was facing and helping me to deal with it. It is quite true that in times of lots of stress and pain, and those moments where I felt so despondent, the internet and my group were there to get me through, the internet has really been a life saver for me. I do not know what I would do without the internet and the means to get the help I needed from people who are dealing with a chronic illness like myself. I have made some great friends through this support group, and cannot imagine dealing with IC without them. They and the internet are very important to me. Iris hi
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

          Comment


          • #6
            Like to add Julie I think the ICN is one of the most awesome web sites on the internet that covers so much of our disease. There is so much information and also the means to get things through the ICN store that help to make our lifes a little more comfortable. Good luck with your paper, let us know how you do, hugs Iris hi hat
            Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

            Comment


            • #7
              Ok, another part to the question.......I suspect one reason why this type of message board is so important is that talking about a bladder disease is not exactly dinner table conversation or pillow talk. Add that to the fact that many people with IC can't travel well (too much pain too tired etc) and the fact that not as many people have this that have arthritis., for example, and it is really can be a lonely disease.

              I don't want to put words in people's mouths, but do any of you have thoughts along those lines as well....breaking the loneliness, breaking the silence......etc.......?

              BTW..........this is for a speech, actually, but some of the information may end up in a paper someday. My program is in Technical Communications and I am focusing on speaking and technology rather than technical writing.
              Hey.....you guys are the best! 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


              • #8
                Julie,

                This sight has given me a wealth of information, but the most important thing it has given me is support. My first posts were answered quickly and compassionately by so many. I was at the end of the line deciding whether to sink or swim. Well you guys got me swimming again. It is slow going, but just knowing I can come here anytime for help it so comforting. I hope someday I will be able to say I have Interstitial Cystitis and that nobody will say "Have you tried Cranberry Juice?" Anyway Julie, I hope this helps.

                Kristi

                Comment


                • #9
                  Hi {{{{{{Julie}}}}}} hi It's been a long time.

                  After being diagnosed with Eosinophilic Cystitis, I was completely alone. At that time (1993) there were fewer than 250 documented cases of EC in all of medical history. For years I searched the internet daily and emailed dozens of doctors around the world hoping to find information about this rare disorder. The hours I spent each week at public and medical libraries turned up nothing. I traveled half way across the country to see "specialists" in several states who had no advice to give. They were just extremely curious. I felt like a sideshow freak.

                  When I had finally reached what I thought was the end of the line, God led me to the ICN. Even though I didn't have IC, I was welcomed with open arms by a most loving and accepting 'family of friends'. Finally, there were others who understood the pain and frustrations I lived with. Finally, there was someone to talk to, to share with, to lean on. My husband, children and close friends did the best they could to help, but trying to explain EC to them was like trying to explain colors to a blind person. I thank God for blessing me with their love and support, but they just didn't have a clue.

                  I still search the internet for EC news. There are well over 1,000 web pages that mention EC, but after the repeats, definitions and veterinary pages are eliminated, the end result is 56. That's far better than the 19 listings 10 years ago! Every once in a while I find something interesting, but nothing that will help. [Never take for granted all of the IC research that's being done!]

                  In spite of all the challenges, life is basically good. Can't help but smile because of the understanding and support I've received from the IC community here at the ICN. You're all angels and I'm so very thankful that God allowed me to cross your paths.

                  The internet in an invaluable tool for research and communication. Doors are now open that, prior to the internet, never existed. Now, how cool is that?!

                  Julie, you'll do well with this assignment... I just know it. kissing

                  I keep you in my prayers.

                  With Love,
                  Cricket
                  "The beauty of the human mind over the body is that if you can't run, you can walk; if you can't walk, you can crawl; if you can't crawl - stay still and imagine getting there. ~ Johnnetta B. Cole ~"

                  Comment


                  • #10
                    AMEN <<Kristi2>>! If one more person tells me I should drink more cranberry juice!! Then, when I tell them that actually, that is the worst possible thing I could do, they either want to argue or look at me like I'm clueless. I'm thankful for them that they aren't dealing with our pain; but, man, it really irritates me sometimes. Then, it has been difficult too trying to explain IC to people that have never heard of it.

                    So, Julie, in response to your original post, this site is a Godsend to me too! To just have other people that understand what's going on and the "real" pain that I have, is priceless.
                    Luanne

                    Comment


                    • #11
                      Okay --- here goes! Before I went on the internet and found the IC Network, I did feel terribly alone with my IC. I had met a few people with it, but none who had any real knowledge about it. I'm very fortunate to have an excellent, caring uro, but I also have a need to interact with others who also have IC.

                      I don't feel alone with my IC any more. If I'm having a problem --- or just have a need to vent --- I know there are many, many people here who understand.

                      Warmest hugs,
                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      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: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      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.
                      [3MG]

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

                      Comment


                      • #12
                        Here geoes!
                        I started having all these bladder problems and didn't know what it was. When i finally got a possible name I was relieved but then scared after researching it. I became so depressed that suicide was an everyday thought. I became so depressed that my family was in shambles and my kids were without a mother. I came across the ICN one day and for almost a year continued to read the boards but i never posted. I got to where I knew most everyone without ever even talking to them. After becoming so scared I had nowhere to turn I posted my first message. The people here have given me advice and helped me thru some of my most difficult decisions. I have found encouragement and support as well as made alot of friends. I'm still at my wit's end trying to figure out what's wrong but I know I will have support in whatever happens!

                        Michaela

                        Comment


                        • #13
                          Julie, I have tried to break the silence about my Ic at work and at home. Noone understands it. they think I am cured since I had the bladder supenson done. I said I still have ic and will have good and bad days. If they don't have it, they don't understand what you are going through. I was at my ic support meeting today and alot of heads were knodding about the cranberry juice, they say can't you just drink cranberry juice and I try to explain to them it is too acidic for the bladder. It is hard to break the silence about ic. Sometimes I feel so ashamed and embarassed that I have to go the bathroom more times than others and that I get tired easily. Stress makes my ic worse. I know I am flaring and I am going back to work on Monday. How do you get people to understand about this ic? Not easy is it. thanks for asking. I know that you will do well on the paper. Praying for you. grouphug grouphug grouphug
                          Hang in there , There is hope.
                          There is hope. Prayer works.

                          Love, Debbie

                          Comment


                          • #14
                            Hi Julie, as for your second question about breaking the silence of IC. I was able to talk about my IC very openly to my friends when I knew what I was dealing with, and when I had been able to overcome my own feelings of being completely alone, also finding the IC network and the IC family which has really given me the extra support and caring, that I needed to be able to talk frankly about what IC is, and that it is classified as a chronic illness. I found to my surprise that they were really curious to know all about the disease and if any research was being done to help us out. I only wish that more people were curious about IC and we could really get it out there and break the silence. Only one friend mentioned the cranberry juice idea, and I mentioned imagine having an open wound on your arm and pouring vinegar on it, the expression on her face told me that she really got the hint of IC and how it felt. Take care and thanks for asking the qusetions, hope everything goes well, hugs Iris
                            Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

                            Comment

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