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IC Related PR -- Getting the Word Out

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  • IC Related PR -- Getting the Word Out

    Hey all,

    As an Angel of the Airwaves, one of my primary duties is to try to get information about IC and stories of IC patients out there, whether it be in newspapers, on TV, on the radio, in magazines, or anywhere else!

    Recently I've received a couple of requests and inquiries about writing to Oprah's show. About once a year, people on the boards bring this up and we have a small group who writes in with stories and requests for shows on IC -- but, as you all know, we have not been granted this wish and we have never heard from the producers.

    My feeling is that if you all really want to be part of an Oprah show on IC, this year we are really going to have to work HARD. It's become pretty darn obvious that we are going to have to yell louder and be pushier than ever before if you want this to happen.

    This year, instead of just having a few people write in, let's absolutely flood the show's inbox with requests for shows on IC, personal stories, and stories from those who care for IC patients. We need each and every one of you who is capable of writing in to do so, and we need each and every one of you to ask at least one sympathetic friend, family member, co-worker, or even DOCTOR to write in to the show as well.

    You do not have to write a long, drawn out story. You do not even have to know how to write well. All you need to do is write down how you feel in your own words and hit "send." You can be as quiet or as vocal as you want, and you can be as ambitious as you want. Your letter can be short and sweet, requesting that they research IC as a condition and do a show on it because it affects millions of people worldwide but yet no one knows about it. Or, it can be a detailed account of your own struggle with IC and how it affected your life. Plus, your spouse could write in and describe his/her own struggles with your condition... and your friends can too. It's always good to have letters from all points of view.

    If you're ambitious, volunteer yourself to be a guest on the show or suggest someone you think would be a great representative of the IC community -- producers love it when you can suggest things like this, because if they do decide to do a show on IC, they won't have to work so hard to find guests. If you can, provide them with resources they can use to start their research as well -- mention the ICN website, the ICA website, the Survival Guide by Dr. Moldwin. If you like your doctor and think he/she knows IC in and out, suggest him/her for a medical panelist -- you know Oprah and other shows always have doctors that specialize in the disease in question on the show as well as patients. Again, this will ease up their workload and make a show about IC easier to produce.

    Here is the website for submitting ideas to Oprah's show:
    https://www.oprah.com/plugger/templa...lugId=B2100004

    If you really want this to happen, and I'm pretty sure you all do since we talk about it all the time , write! I want to log in in a few days and see that the site has crashed because so many of you have written letters.

    There is power in numbers, the saying goes -- yes, one well-written letter is sometimes all it takes, but a hundred letters from people of all walks of life shows them exactly what we want... that there are a LOT of us out here, that IC affects all kinds of people and their families, and that WE WANT TO BE HEARD for once.

    Please consider participating -- don't sit back and say, "Someone else will do it." What if everyone said that?? This time, BE that someone else. Be that tough, strong person I know you are!
    ****
    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.

  • #2
    Aye Aye Captain! I'll give 'er all I've got!!!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *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.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

    Comment


    • #3
      I have sent emails to cbs, nbc, Dr. Phil, Oprah, Katie Couric, Today Show, The View and a few others. I never get a response, but will keep trying!! I watched the girl that was on the Today show a few weeks ago that had the hiccups for 3 weeks and how much of a big deal they were making. I know she was in pain, but I sent an email about all of us and our pain and that we would love to have our story told. I gave them this website address and everything.

      Tracey

      Comment


      • #4
        Hey,

        Great idea. Actually, I think that BECAUSE Womens Day just wrote up an article we might have a better shot this year!!!!

        Here's to hoping, good luck!

        PS, Any and all men out there should write too. Even the little amount of awareness thats out there is generally about women.

        Comment


        • #5
          Just submitted mine. Thanks for the idea Jen!
          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


          • #6
            Tracey, I've written to all of those places too and haven't gotten a response either (and I was so annoyed about the hiccup girl on the Today show -- they did that but won't face a bladder problem affecting millions). It really, really annoys me when I get no response at all and I often feel like giving up... but then I think, well, if I give up, then FOR SURE no one's going to hear about IC.

            My feeling is that maybe, to start off the new year, we could just do a writing campaign and see what happens. Maybe someone is ready to listen now. *shrug*

            We shall see what 2007 brings in terms of IC Awareness!
            ****
            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


            • #7
              Oprah

              Sarojini, I am a nurse in Georgia that believes, treats, listens, and constantly researches this horrible disease that you suffer from. I have given my input to Oprah, and I hope for all of you that she can be your voice. You all are in my prayers daily. I hope we find a treatment that will take all of the IC patients misery away. Have Faith, it will happen. We are working on it.


              DKB

              Comment


              • #8
                Jen,

                I think this is a great idea! Count me in! I will definately write this time too. Maybe with everyone writing at the same time, we can finally get them to do a show about it.

                Hugs,
                Amy

                Comment


                • #9
                  The Dr Phil show was doing something on vaginism(spelling?) and they did reply to me about my VV issue, but they were taping that week and it was too short of notice, plus im single and it seemed to me that they were looking for someone in a relationship as they were showing how it affects relationships.

                  How about Rachel Ray too- I once saw she made a special meal for a boy who had food allergies. I was thinking maybe she could help an IC patients prepare and IC safe meal.


                  Lyme disease diagnosed 11/05
                  vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
                  IC diagnosed with hydro/cysto- may 17, 2006

                  Over growth of lactobicilli found 8/07 treating with doxy.

                  Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

                  8/22/07- was able to get my first speculum exam, with pap

                  Strep D found in bladder with United medical labs May 2006
                  2 strains of strep in stool culture 9/06
                  high Strep ASO titre found 10/06

                  NEW MED

                  Capsasin cream-once a day for 20min,
                  BUt wont lie it does burn

                  About to start valium supositories for PFD

                  Trigger point injections- oct 07

                  Current meds:
                  Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
                  Zanaflex 2mg
                  IC and low oxalate diet, no sugar diet
                  Xanax for appointments to help relax me since they cause so much pain

                  Started PT 3/07, PT has really helped me in ways I never knew that it would

                  Meds ive tried
                  Lyrica
                  Klonopin
                  Singulair
                  Claritin
                  Pyridium
                  Soma- can barely tolerate half a pill
                  Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
                  Estradiol cream
                  Urelle- caused worse bladder spasm and retention

                  Various antibiotics for lyme which caused yeast and made the IC and VV worse

                  waiting for the next chronic illness to pop up


                  "Did you know?
                  Every 15 seconds,
                  a person is
                  diagnosed with
                  interstitial cystitis."
                  Source: J. Dimitrakov, MD

                  Comment


                  • #10
                    Sure, keep the ideas coming Actually I'm going to start another thread asking for ideas for places to write/call.... we can all post there....
                    ****
                    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


                    • #11
                      GREAT idea Jen...you can count me in. We have got to get the word out!
                      Minds are like parachutes-they ony function when they are open.
                      -Thomas DeWar-



                      ICN Newbie Volunteer


                      *ICN 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

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