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 hard of hearing 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 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 the Social Media Assistant for Jim Broatch at RSDSA. In the recent past; I’ve helped IDA during Invisible Disabilities Awareness weeks & was featured on their "Invisible No More" YouTube Channel in 2010 or 2012. On other Social Media, I help teach American Sign Language vocabulary for the "Deaf Socials”. 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. (*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 always say that "HOPE is a verb, and in order to have lit, you must do something". To keep it, you have to keep doing, trying and not give up. Most everything you need to know about me, or to find me on Social Media, you can find at: about.me/suzydukettes ...OR at TearsofTruth.com **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!