I am a survivor first! I am also a Chronic Pain Patient who is Deaf/HOH and lives 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. 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 & oscillar chain. I’m Deaf/HoH & wear 2 hearing aids. I am a proud member of the ASL Deaf community.
In an attempt to keep my spirits up & to help others, I am involved with a few Awareness & 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/HOH Performance Artist & I teach American Sign Language vocabulary on Instagram @ASLSuzyQ & Facebook group 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) & Community.
(*The 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 2018, I was appointed to the US Pain Foundations Board of Directors. I stayed on for only 9 months due to internal turmoil & corruption. 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 behind and I resigned 9-2018.
I was given a "Special Tribute" Award by the State of Michigan 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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