What Really Happened Between NPR, USPF and Me?

Protected: What Really Happened Between NPR, USPF and Me?

Published on November 23, 2018August 22, 2019 by Suzanne

Suzanne

Hello Luvs, I am a survivor first! I am also a Chronic Pain Patient who is a Deafie. I live with Systemic-Full Body RSD/CRPS. It is the highest form of chronic pain, at #45 on McGill Pain Scale. Along with RSD/CRPS, I live with several other high pain chronic illnesses, including: EDS4, Dysautonomia/POTS, Gastroparesis, Chiari, Migraines and more. In May of 2019, I had a brain tumor/auditory tumor called “Cholesteatoma” found. In July 2019, I had a Big surgery called “Tympanomastoidectomy” with a prosthetic Anvil-hearing bone to replace my diseased bones and oscillar chain. I’m Deaf/HOH and I wear 2 hearing aids. I am a proud member of the ASL Deaf community. In an attempt to keep my spirits up and to help others, I am involved with a few Awareness and Advocacy activities online: 1) I continue to be a mentor for newly DX RSD/CRPS patients for RSDSA & I do guest blogging for them 2) I'm a blogger and freelance writer 3) I’m a Patient Leader for WEGO Health 4) I’m a Mentor for persons with RSD/CRPS (I volunteer for Jim Broatch at RSDSA). In the recent past; I’ve helped IDA during Invisible Disabilities Awareness weeks On other Social Media; I am a Deaf Performance Artist and I teach American Sign Language culture, history and vocabulary on Instagram and on YouTube @ASLSuzyQ. I have a Facebook group “ASLExpress” at: www.facebook.com/groups/ASLExpress. My Facebook Page @ASLSuzyQ is for Deaf current information, ASL, History, Community and Culture. I not only blog for my own therapy of sorts, but with the hope of helping others. Some other areas in which I try to volunteer when Im able, are: 1) I've been a Chemo-Angel, Card Angel, Special Assignments Angel and Prayer Angel for the "Chemo-Angels" program since 2005. 2) I've been a Patient Health advocate since 2007 3) I also have a sign Language Youtube channel where I post ASL Covers of Many different kinds of uplifting songs and Deaf History, Culture, Language (ASL) and Community. (*My ASL Youtube page is found at: www.YouTube.com/ASLSuzyQ). Along with doing these things; I have held awareness events, fundraisers and have helped with other programs. In January 31, 2018, I was asked to be on the US Pain Foundations Board of Directors. I did not actually start until end of March. I was an active Board Member on for only 6 months. I left after finding out about their internal turmoil and corruption. At the beginning, I tried to stay to help rebuild USPF, but it felt to me as though things went from bad or worse. My integrity pushed me to leave USPF and I resigned 9-2018. I was given a "Special Tribute" Award in 2017. This award was given to me by then MI Governor, Rick Snyder, for my advocacy and social work within the Pain Community. I always say that "HOPE is a verb, and in order to have it, you must do something". To keep it, you have to keep doing, trying and not give up. **I am not a Medical personnel nor do I claim to be an expert regarding any of the subjects I may write about. I write from my own experiences. Also, Please don't copy or reproduce any part of this blog without my permission. Thank you!

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