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  • IC PR -- Ideas other than "The Oprah Show"????

    Okay, folks... I've got one thread going asking people to write in to Oprah's "story idea" website since I've gotten a lot of questions about writing in to that particular show lately.

    Now what I want from you all are ideas of other places we can write or call. They can be TV shows, radio shows, magazines ... anything you can think of. Let's make the biggest list we can and then organize ourselves so that we can get letters out!

    For example, I plan on submitting a "query letter" to Good Housekeeping magazine. That means I am going to write in with the idea to write about my IC struggle, but I am going to offer to write the article myself so they don't have to pick a reporter. They take articles about women who have been through a long medical drama, and I hope to get my idea accepted and my story published. It's aiming really high, but setting big goals is just part of me.

    PLEASE REALIZE YOU DO NOT HAVE TO DO THAT MUCH. You can just post a suggestion here about somewhere you think we should contact, and if you have a specific idea to sell, let us know. You can also watch this thread and if you see something you'd like to work on, you can go for it. All you need to do, for example, is write a quick letter to, say, the Dr. Phil show with the suggestion to do a show on IC.

    We have written to many of these places before, but sometimes it takes multiple tries to get your story heard... let's just go for it. We've all been too quiet in terms of PR for IC-- Jill has done a LOT, but we all can get involved too.

    Just want to let you know that you CAN get yourself heard.

    Okay -- let's get the ideas out here
    ****
    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
    I think that is great idea...
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN 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


    • #3
      I agree that this is a great idea! We definately need all the publicity we can get. The Woman's Day magazine article was a good start, but it lacked alot of basic information, such as a symptoms list, and this website and other sources of help and information. Also, since the article was about 2 sisters, it made it sound like it was some obscure, genetic disease, rather than a common random one.

      I really, truly hope that with everyone trying this time that we finally get thru to some major media outlets. I would love to see it covered on "Good Morning America", "The Today Show", "20/20", "Dateline NBC", "60 Minutes", and also written about in major newspapers such as "The New Yorker" and "USA Today". The more coverage, the better! Maybe someday we can even get to the point where we will be able to tell someone "I have IC." and they will know what it is without our having to explain it! Maybe we might even get to the point where we can say that to a DOCTOR, and not have to explain what it is!!! Wouldnt that be awesome????!!!!

      Thank you, Jen, for bringing up this much needed topic. After all, if we dont get the word out, who's gonna?

      Hugs,
      Amy

      Comment


      • #4
        Dicovery health/TLC

        I am addicted to those medical shows they do and one of my favorites is "Mystery Diganosis". I am not sure if lots of letter would help or how they gets their ideas for the shows, but they do use real people and give very detailed explanations about what the diseases/conditions are and what treatments did/didn't work for the individual featured. So many women here have suffered for years without any answers and have gone through countless unecessary surgeries/procedures. I letter from an iC patient who suffered for a long time without a diagnosis would be very powerful. I have seen things on this show that are actually not as uncommon as you would think; from AIDS, to Ovarian cancer, lupus, to lyme disease. Unlike many of the shows mentionted I have found that Discovery channel shows tend to not avoid a subject because it is "embarrassing" (you know, it uses words like "vaginal" and "bladder", heaven forbid!) And all of the episodes of this show I have watched were very informative and personal. Just a suggestion. It is cable, but alot of people are just as addicted to these shows as I am!

        Also, I am writing letters to my two state senators encouraging them to pass legislation that will make it so patients with medical conditions will be able to use employee rest rooms if they show their patient alert card or note from Doctor. Not exactly IC PR, but still very important. I really am hoping for a day when patients like myself here in NY( and hopefully all over the USA) will not have to be rudely turned away and suffer humiliation and incontinence.
        Rachel
        DX's:
        IC; PFD; possible Fibromyalgia; IBS;

        Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

        I've Tried:
        three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
        Currently using:
        Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
        Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
        I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

        Comment


        • #5
          I have sent to rachel ray already a couple weeks ago]

          Comment


          • #6
            Oprah

            I've written to Oprah several times without any luck. I "dido" the suggestions Amy made! Also, maybe we should try our own home-towns newspaper?

            Also, maybe we can pick dates to write differents shows? That way maybe if we flood them with the same suggestions (about airring a segmant on IC), they have to take a look?
            MARY


            Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

            Comment


            • #7
              I have made it a monthly thing like pms emailing talk shows.. there just not interested in us..
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                1. Keep the ideas comin', ladies and gentlemen! These are all great... I'm sure there are more out there too

                2. Rachel, what a great idea about the medical mystery show on the Discovery Channel!! I love that show too. When I've got a little time (this week is horrible with regard to work and doctor appointments and the like, so probably over the weekend, I will browse around their site to see if I can find any info about submitting an idea there. Don't be afraid to check it out yourself though and post it for everyone's use if I'm taking too long, though

                I'm really happy you're writing to your elected officials about IC issues -- we have a type of disability too, and we should be allowed to use the restroom in emergencies too!!

                3. Mary -- you are right that local newspapers are a great way to start out in the IC PR world. I think I've posted about it, but shortly after moving to Winston-Salem, I wrote to the Winston-Salem Journal and asked if they'd be interested in doing an article on IC. My letter started with a description of the disease, who it affects, what the symptoms are (in gory detail)...etc. Then I described a bit about my own struggle with IC and asked them if they'd be willing to consider writing an article on IC.

                It worked and it even made the front page of the "Health" Section!! I met with one of the health reporters at the coffee shop in the hospital I work in. The interview lasted about an hour, and she then went and interviewed a urologist who treats IC as well. A few days later, they came to my home to take a picture for the article (you can always decline this ) -- I made sure I had them come after a long day of work so I looked IC-flare lousy for effect. I'm only partially kidding. I combed my hair so I wasn't embarrassingly awful, but the rest was left as is! LMAO

                To write to your paper, you can find their email address on their website. Usually, an editor checks the mailbox for things that look interesting, and then if he/she finds something, he/she will assign the idea to a reporter, who will contact you, so make sure you give an email address or phone number.

                Just a tip: when you write your query letter or email, make sure it's concise and clear -- detailed, but not so much that it runs over one page. Usually the really long ones get tossed, unfortunately, because they get so many they just don't have time to read them.

                3. Dates for writing to certain shows. This is something I've been tossing around in my head as well. Big shows like Oprah, The Today Show, and the like usually have many producers and editors that wade through all the suggestions -- they kind of "take turns" checking the mailbox associated with the website or the suggestion box. So, if one of us were to write Monday, we'd get one production assistant who might toss the note, and if someone wrote, say, Thursday, a different person would get the note and toss it again.... it would take a long time to get the one sympathetic production assistant who'd take our story to her (or his) bosses! However, if the same person kept getting emails about IC all in one day because we had a mass emailing session, he/she would probably start to realize that "Hey, there is a real problem here; perhaps it's worth looking into."

                Is anyone out there willing to help me organize something like this? PM me if so. Maybe a few of us could discuss it in cyberspace and find the addresses for these shows. Then, we could designate say, April 24th "TODAY SHOW DAY." (I just picked that 'cause it's my birthday and a writing campaign on my birthday would be a great present ... LOL). This way, everyone on the boards will know what day we are writing in ahead of time, so we can all prepare our letters ahead of time and then hit "send" on the appointed day. Whaddaya think??

                Keep up the GREAT WORK. We ARE going to get the word out. Do not get discouraged because things aren't happening quickly. All good things take time!!
                ****
                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


                • #9
                  Tig, yeah, I know... it feels that way, doesn't it?

                  BUT I refuse to give up. That's why we need lots of ideas about shows, magazines, etc to try, new methods to try, and the like. We will just have to outsmart them!
                  ****
                  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


                  • #10
                    Jen..
                    I have not wrote any shows or magazines, But I have a pretty big email address book, so I copied and pasted a really good article on IC and sent it to my friends and I ask them to send it to thier other friends..I also have my email addy on the bottom, to see if I get any replys with people who have been dg with IC or have symptoms of IC.. I have had a few responses from people saying they have had IC symptoms a long time, but have never heard of the disease..

                    But anyways this is just a thought..
                    Hugs
                    Ronda

                    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                    Link to Patient Handbook:
                    http://www.ic-network.com/handbook/

                    Diet Reference Sheet:
                    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                    Meds I have Tried:
                    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                    Lexapro< Bad reaction to this med!
                    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                    Dx With IC in Nov 2006 with Hydro/Cysto
                    Hydro/Cysto Caused Bladder to Rupture.

                    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                    ICN 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


                    • #11
                      Those are all great ideas! Jen, I didnt realize that alot of times, different people read the letters on different days. That is very good to know! I do believe that persistance pays off! I will do whatever I can. I believe that it is so important for all of us to get the word out there. I realize we dont have a big PR machine behind us the way they do with Breast cancer, and other things, but we have alot of motivated people with some awesome ideas! All it takes is one person (on the right day), to read an email and to believe our story is one worth telling. I just saw on here today that there are over 14,000 members registered now. That is alot of power! And that's not even counting our families and friends!

                      Thank you, Jen, for bringing up this topic! It is time we made someone listen to us!

                      Hugs,
                      Amy

                      Comment


                      • #12
                        Jen

                        Jen,

                        You have my vote on April 24th for THE TODAY SHOW.

                        Here are more ideas:

                        1. Someone writes a generic letter that we copy and paste and basically send out to all shows. People, places and things. Signing our own name of course.

                        I absolutely suck at writing. From my Social Work background, I am much better in person or one on one. Writing, just is not my cup of tea. I believe if we had "a" letter more people on this site would be much more prone to send it. We also would not have to keep writing a different letter each time we want to send it to different shows and such. I for one just do not have the time nor the energy it takes to write alot.

                        I for one nominate, Amy, and ICLori, they are both fantastic at getting their point across, as you are as well, from all the posts I have read from you all.

                        2. Someone needs to come up with and post a CALENDER OF EVENTS, A SCHEDULE OF SORTS:
                        Shows, dates, ect. Such as APRIL 24TH, THE TODAY SHOW.

                        3. Also do we have a Month that is chosen for IC AWARENESS MONTH? I think that we need to choose a month like Breast Cancer Awareness, Heart Awareness Month and so on......

                        I for one would love the Spring.......Since our site here is adorned with a butterfly motif (sp) That to me represents a transformation that takes place in the spring when the moth transforms into a beautiful butterfly. Such as the transformations that not only our bodies undertake, but as well as our "whole" being with this disease.

                        4. Shirts? I have a wonderful idea for shirts. The only thing stopping me right now is funding. I'm in the process of calling local companies that work with screen printing to see if they will donate the first batch.

                        Would you ALL be interested? If I can get some printed up and sell them here on the site, take the money, donate some of the proceeds to our site or other IC events as such, put the rest back into getting more shirts printed? My husband said he would be proud to wear one.

                        Thank you Jen for doing all this, IT HAS BEEN TOO LONG! COME ON LADIES LET'S GET FIRED UP! :woohoo: :woohoo: :woohoo:

                        GOD BLESS YOU ALL!
                        MARY


                        Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

                        Comment


                        • #13
                          I think the shirt idea is a very good idea
                          Hugs
                          Ronda

                          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                          Link to Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Diet Reference Sheet:
                          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                          Meds I have Tried:
                          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                          Lexapro< Bad reaction to this med!
                          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                          Dx With IC in Nov 2006 with Hydro/Cysto
                          Hydro/Cysto Caused Bladder to Rupture.

                          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                          ICN 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


                          • #14
                            I'd definitely like to be a part of raising IC awareness; please keep me posted.

                            Some ideas I have are:

                            1. Awareness in the work place. I agree that it's important to have a nation-wide level of awareness but how many of us struggle in the work place; having to make people understand what IC is? I think that's a good place to start.

                            2. I think it would be nice to get some type of symbol for raising awareness; many different causes have ribbons etc; I would like to see a symbol that people can identify IC with and then perhaps have stickers or other things with that symbol.

                            3. I think a book containing a collection of short stories, poems, ideas for IC patients would be lovely. The money could contribute towards research on IC.

                            That's all I can think of for now. Blessings!
                            Last edited by isles; 03-30-2007, 10:37 PM.
                            "I can do all things through Christ who strengthens me." Phillipians 4:13

                            Comment


                            • #15
                              These are all good ideas.

                              Ok, if you want ICLori or Amy to write a generic letter, please PM them and tell them what's up and see if they are willing. However, it may be better and more powerful if everyone writes about their OWN story -- everyone's is different, and to read different stories is much more heartbreaking than to simply get a form letter, IMHO.

                              Also, help me make a list of shows we would like to write. We know the Today Show, Oprah, Dateline... where else?

                              We don't have an IC Awareness month yet, but it would be nice to arrange it. We need to research how to do it

                              Shirts -- "Moonheart" has an online store that has "IC Team" shirts and other items for sale. Her signature contains the link.

                              Workplace awareness is very important, you are right. However, we are going to have to research that as well and come up with a plan for how to do that. Brochures to distribute, etc? What does everyone think?
                              ****
                              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

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