Dysautonomia and POTS Information

Published on June 9, 2014 by Suzanne

Dysautonomias_Handbook6X9small.pdf · version 1

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!

Personal Links

Verified Services

View Full Profile →

True Colors -ASL (From Trolls Movie) youtu.be/GF8-p5dFdzg via @YouTubeA few Recent Tweets from me on ASLSuzyQ 10 hours ago
I went to virtual online #youtubecreator workshop and @YouTubeCreators @YouTube provided me with an #aslinterpreter… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 1 day ago
I’m Mad At Disney #ASL #shorts video youtu.be/Pj63p5J-4sYA few Recent Tweets from me on ASLSuzyQ 1 day ago
📹 [description: Hey it’s me, Suzy! I have long, dark hair & brown eyes. I’m wearing a Minnie Mouse shirt & I have a… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 1 day ago
Just posted a video instagram.com/p/CFih7GAhia7/…A few Recent Tweets from me on ASLSuzyQ 1 day ago
📷 Hanging out with my hubby #grandkidsofinstagram #iloveher #ilovethem #mysweetgirls #youtubecreator @ ASLSuzyQ… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 1 day ago
📹 Happy International Sign Languages Day! My husband and me doing a tiny acting skit just for fun. It’s for this sp… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 2 days ago