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 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!

Personal Links

Verified Services

View Full Profile →

-Hey it’s me, Suzy! I have long, dark hair & brown eyes. I’m on left side of duet with jatchle “Marie” she’s on rig… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 3 hours ago
Hey it’s me, Suzy! I have long, dark hair & brown eyes. I’m with my husband, Craig. We are wearing our T-shirts fro… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 10 hours ago
#Repost isignusign with @get_repost ・・・ STOP HATE WITH LOVE.⁣ ⁣ #georgefloyd #stophate #equality #love #peace… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 21 hours ago
Hey it’s me, Suzy! I have long, dark hair & brown eyes. I’m wearing tie dye #ily shirt from deafloveily and the gir… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 1 day ago
Hey it’s me, Suzy! I have long, dark hair & brown eyes. I’m in duet with lady_bumface and she’s using #Auslan & I’m… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 1 day ago
Hey it’s me, Suzy! I have long, dark hair & brown eyes. I’m wearing several different outfits and at the end is my… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 2 days ago
This full video with more sports/recreation ASL signs is at my YouTube channel at: ASLSUZYQ (link is also in my Bi… twitter.com/i/web/status/1…A few Recent Tweets from me on ASLSuzyQ 3 days ago

Follow @ASLSuzyQ

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

%d bloggers like this:

S	M	T	W	T	F	S
1	2	3	4	5	6	7
8	9	10	11	12	13	14
15	16	17	18	19	20	21
22	23	24	25	26	27	28
29	30

Share this:

Like this:

Related