Winner, winner! Inspirational role models we look up to. Ostomy awareness involves advocacy, and to be effective in advocating for change we need influencers. Advocacy can be standing up and speaking out for a cause, voicing concerns about misconceptions, or connecting with individuals and organizations who need support. All of these exceptional women have won awards this year for their public advocacy efforts. Amber Wallace won a WEGO Health Award. View image on Twitter WEGO Health@wegohealth Congratulations to 2018 #WEGOHealthAwards Best Kept Secret winner Amber Wallace! @ostomydiaries Check out all the finalist & winner videos from this year’s celebration here: https://wegoh.co/2OWMWdb 4:50 PM – Oct 8, 2018 4 See WEGO Health’s other…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
Real Talk about Ostomies
On the eve of World Ostomy Day, I write this blog post in hopes of debunking many of the myths surrounding living with an ostomy. So here goes nothing… I always get super excited when friends and family muster up the courage to ask about my ostomy. It makes me feel so connected to them and like I’m being recognized for all of me and not just the healthy-looking parts of me. I feel their concern, their love and most of all, their interest in how I live my life, chronic illness and disabilities abound. See, the thing is, living with an ostomy is often the proverbial elephant in the…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
The Value of Support Groups
In a world where medical professionals have only a few minutes to go over a whole slew of symptoms, medication interactions, and surgical complications, it is impossible to cover the psychosocial aspects of one’s condition(s). These aspects include methods of coping with the emotional roller coaster of living with inflammatory bowel disease (IBD).This is where support groups come into the picture. They fill that gap between doctor-patient interactions and provide real-time support and understanding to patients caught in the rigmarole of hospital visits, health insurance, and invasive testing. But more than this, the true value of support groups lies in empowering patients by fostering lifelong friendships through a deep understanding of…
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The Waiting Game
Does nail-biting anxiety wash over you as you await results after a colonoscopy, MRI, or CT scan? Or restlessness while waiting for your latest round of biologics to start kicking in? Yeah, me too. I sit here today twiddling my thumbs endlessly as I await my ileoscopy and upper endoscopy biopsies from last week. This form of anxiety is all part of the waiting game. We patients live in constant agony while test results are pending, especially when a definitive diagnosis depends on those results. We worry as we take dose after dose of the latest round of immunosuppressants, earnestly hoping that this medication will be “it” — remission, finally. These feelings…
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MC Capital T Reppin’ from the BK Walk!
Thanks to the Crohn’s & Colitis Foundation for the opportunity to serve my fellow IBDers by sharing my experiences as well as introducing past and present Honored Heroes at the Brooklyn Take Steps Walk. Hats off to all of you for being brave enough to share how miserable these diseases are and how you are working to transcend #IBD. And a special thank you to all the doctors/surgeons and Lyfebulb for coming out to support us patients in our struggle! Even though I look well in the above photo, after the walk, I quickly deteriorated. I was dehydrated, had trouble breathing and had a partial bowel obstruction. Luckily, the Foundation…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
12 News to Your Health IBD Segment
My TV debut with News 12 NJ! I discuss having inflammatory bowel disease (IBD) and ostomy surgery alongside Rosemarie Golombos, Executive Director of the NJ Chapter of the Crohn’s and Colitis Foundation. Thank you, Prashanthi Musapet, for the special segment and for helping to create awareness and acceptance for these awful diseases!
- acceptance, awareness, caregivers, colorectal cancer, coping with flares, Crohn's, Father's Day, living with IBD, patient rights, stigma, Ulcerative Colitis
Honoring My Late Father
(Daddy at his Doctoral Commencement at Columbia University in the ’70s.) This Father’s Day I honor all fathers. I especially honor my father who devoted his life to the sciences and to his family. He toiled endlessly until the very last minute working until he couldn’t anymore all to ensure his wife and daughters could get by without him. Not a day goes by that I don’t wonder how much better life would have been if he could have lived to see his girls all grown up. ? His battle with Crohn’s and later colorectal cancer may have taken his life but he has become my inspiration to fight incessantly for my…
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A Day on the Hill: Putting a Face on IBD Legislation
As I walked up the steps toward Capitol Hill, the realization finally struck: I was really doing this. I was really lobbying for better healthcare legislation for patients like myself. More than 100 volunteers and I had traveled from all over the country to Washington, D.C., as part of the Crohn’s & Colitis Foundation’s Day on the Hill program (DOH). And we all shared one mission: to bring our stories forward to advocate for improvements in legislation for all of us suffering from inflammatory bowel disease (IBD). (Courtesy of Tina Aswani Omprakash) This was the first time I had lobbied for anything, let alone for IBD. I was nervous and excited…