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 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 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 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 volunteer by teaching 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 it, 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!

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Pain Awareness month 2018 Canton MI Public library display

Pain awareness month Beautify in Blue 2018

Pain Awareness month 2018 Canton MI Public library display

Pain awareness month Beautify in Blue 2018

Pain Awareness month 2018 Canton MI Public library display

Pain awareness month Beautify in Blue 2018

Pain Awareness month proclamation from MI Gov. Rick Snyder

alot of CRPS awareness

helping with the students at the University’s project about CRPS

spreading awareness with our Soldiers

awareness event and me at a table talking to people, advocating

me at EMU for awareness event

just Me “Keeping Hope Alive”

talking about CRPS for Awareness at EMU in MI

Processed with PICSPLAY

kitty cat awareness for CRPS

support group “meet ups” in MIchigan

friends with CRPS “Meet up” Processed with PICSPLAY

just me

setting up for awareness review

my husband, craig sporting his RSDHOPE.ORG t-shirt and supporting Awareness for CRPS

Processed with PICSPLAY

working with the College students

a collage of support for CRPS

CRPS Awareness ribbon

awareness jewelry at: Support In Jewelry on Facebook (www.facebook.com/supportinjewelry

House Resolution #267 that I for Michigan in 2013

me with awareness in mind

a GIF

my husband & Me for CRPS Awareness

https://15andmeowing.com

A not-so-crazy couple with 15 cats

My Pets weird behavior

BeingCharis

a voice for many

Chronic Pain India

A Charitable Trust trying to raise awareness in India about various chronic pain conditions and chronic illness which are usually invisible to naked eyes.

Site Title

Flutterby's Rantings and Ravings

Me, what I'm going through, family - hope it's interesting to some!

chronicpainhowcanisurvive

nellhomewithpain

At home with pain, but seeking life!

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