Tuesday, July 23, 2013

TWEET FOR #ICAwareness

I am sure many of you are aware that, in addition to this Blog, I have also taken to Twitter to help raise #ICAwareness. Well, today I am very excited. It has taken persistence, dedication and time but I now have 41 "followers". Of course, I'm no celebrity with thousands of followers, but the point of getting followers is that, if they have a lot of followers, then my Tweets go out to all of their followers too and it's exponential. 

I have been truly excited and honored to have gotten some big health organizations to follow me such as the American Urological Association (AUA); the Urology Care Foundation; C. Michael Gibson, M.D.; Brigham & Women's Hospital; Urology Times; Congressman Brad Schneider of Illinois and of course the ICA along with many IC patients and more. I have also gotten some great Re-Tweets from Dr. Nancy Snyderman, Dr. Lisa from The Doctors, the ICA, the National Organization for Rare Disorders; and again other IC patients.

Anytime I can get an important doctor, medical organization/publication to follow me or re-Tweet me, I am reaching thousands of people to help spread the word about IC! The more the better, of course!

But today is a landmark day for me. I now have 41 Followers and I've sent out 3,473 Tweets about IC! I am following 149 people/groups/organizations and Tweet almost every day about IC. If all of us suffering from IC did this, imagine what we might accomplish!

So won't you all join me on Twitter and help raise #ICAwareness about #IC! 


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  2. Coey; Thanks for following my Blog! That's OK if you can't Tweet. But if you want to help spread the word about IC, share this Blog with other IC patients that you may know or ask others you know that DO Tweet to follow the ICA's Twitter page or mine. Regardless, I appreciate you following my Blog; it's good to know who is following so thank's for this post!

  3. I definitely spread the word. My medical "team" in Columbus are all aware of my situation - now that I am at this point in my healing. I share the publications from both the ICA and NVA with all of my providers. My primary care doc even said now when she sees recurring UTIs, she now thinks about potential IC, which is wonderful.

    I saw 8 gynecologists, 5 urologists, 1 allergist/immunologist, 1 vulvar specialist, 2 gastro doctors and 3 primary care doctors from 2007 to 2009 to get to where I am today, so a total of 20 doctors.

    I have the beginnings of a book about my pain journey. A couple of the years were so bad, but I kept pushing and moving from doc to doc and putting the pieces together myself. I had no one to advocate for me. My current doctors consider me a success story, but of course none of these 3 disorders will ever go away, one just has to manage them with diet, RX and wellness activities. I see a chiropractor once a week as well as an acupuncturist. I have good and bad days, especially when my eating is not pure. My bladder tells me almost immediately when I eat something that it doesn't like.

  4. Good for you Coey! Love to hear stories of patients advocating for themselves and taking charge of their medical care!