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Dysautonomia and POTS Information

Published on June 9, 2014 by Suzanne

Dysautonomias_Handbook6X9small.pdf · version 1

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Link•Categories Dysautonomia/ANS failure/POTS, Miscellaneous•Tags Dysautonomia, faint, fainting, NCS, Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, POTS, RAS, STARS, Syncope

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Suzanne

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

Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
Pain Awareness month 2018 Canton MI Public library display
Pain Awareness month 2018 Canton MI Public library display
Pain awareness month Beautify in Blue 2018
Pain awareness month Beautify in Blue 2018
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Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder
Pain Awareness month proclamation from MI Gov. Rick Snyder

Pain Awareness Month 2018

check out the new gallery of photos for Pain Awareness Month 2018.

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other LINKS

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personal Links

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  • Facebook Jewelry Page : SUPPORT IN JEWELRY
  • Facebook Page "AETOPP" (Association for Ethical Treatment of Pain Patients)
  • I am a WEGO Health Patient Leader
  • People In Pain Unite on Facebook

Suzanne Stewart

  • Suzanne
    • No Pain Act
    • Accessibility A Legal Right
    • Testimony From A Pain Patient, Re: Suboxone And Bupenorphrine
    • Cholesteatoma, Deafness And ASL
    • Justice Served? What’s your opinion?
    • Regarding Buprenorphrine-Suboxone
    • Trauma Resurfaces The Pain of Yesterday!
    • Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice
    • New Card Helps Deaf Communicate With Police
    • Pondering Pain Awareness Month 2019
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  • ASL Cover Songs-You Tube Channel Info
  • Copyright info…2/6/07
  • Dysautonomia/POTS And S.I.B.O
  • My Advocacy Pages On Social Media:
  • My ADVOCACY You Tube Channel FOR Chronic Pain And CRPS Patients
  • My Featured Videos
  • Quotes to live By & to Ponder!
  • SupportInJewelry.Tumblr.com
  • Link to PDF file RSD/CRPS” by Dr. R. Swartzman MD

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Recent Posts: The Kitty Cat Diaries

I Got A New “I” Pad!

I Got A New “I” Pad!

It’s Been Awhile!

It’s Been Awhile!

Dear Diary, It’s All Up To Me!

Dear Diary, It’s All Up To Me!

Headbutts & Purrs

Headbutts & Purrs

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Cat Scouts and Happy New Year!

RASE For CRPS

RASE For CRPS

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th_ACFD6255-6663-428A-9487-BA1E67965A30_123215615_10155743417870561_5942308632967212196_oIDADSC_5357-2DSC_5359-2DSC_5362-2DSC_5412-2DSC_5372-2DSC_5408-2DSC_5384-2
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Support IN Jewelry…..Awareness/Support & More-Designs By Suzanne

Support IN Jewelry…..Awareness/Support & More-Designs By Suzanne

My Most Recent Posts

  • No Pain Act December 7, 2019
  • Accessibility A Legal Right November 17, 2019
  • Testimony From A Pain Patient, Re: Suboxone And Bupenorphrine November 11, 2019
  • Cholesteatoma, Deafness And ASL November 7, 2019
  • Justice Served? What’s your opinion? October 30, 2019

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Directory of This Blogs’ Pages

  • Home
  • My Advocacy Pages On Social Media:
  • My Featured Videos
  • ASL Cover Songs-You Tube Channel Info
  • My You Tube Channel For Advocacy And Info
  • Link to PDF file RSD/CRPS By Dr. R. Swartzman MD
  • SupportInJewelry.Tumblr.com
  • Quotes to live By And to Ponder!
  • Copyright info 2/6/13
  • Health Advocate
  • chronic pain
  • Opioids
  • Dysautonomia/POTS And S.I.B.O
  • Articles Authored by Me On National Pain Report

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CRPS Advocacy Photos

File Nov 13, 11 14 51 PM
alot of CRPS awareness
alot of CRPS awareness
helping with the students at the University's project about CRPS
helping with the students at the University’s project about CRPS
spreading awareness with our Soldiers
spreading awareness with our Soldiers
awareness event and me at a table talking to people, advocating
awareness event and me at a table talking to people, advocating
me at EMU for awareness event
me at EMU for awareness event
just Me "Keeping Hope Alive"
just Me “Keeping Hope Alive”
talking about CRPS for Awareness at EMU in MI
talking about CRPS for Awareness at EMU in MI
Processed with PICSPLAY
Processed with PICSPLAY
Photo Nov 08, 10 01 38 AM
kitty cat awareness for CRPS
kitty cat awareness for CRPS
support group "meet ups" in MIchigan
support group “meet ups” in MIchigan
friends with CRPS "Meet up" Processed with PICSPLAY
friends with CRPS “Meet up” Processed with PICSPLAY
just me
just me
setting up for awareness review
setting up for awareness review
my husband, craig sporting his RSDHOPE.ORG t-shirt and supporting Awareness for CRPS
my husband, craig sporting his RSDHOPE.ORG t-shirt and supporting Awareness for CRPS
Processed with PICSPLAY
Processed with PICSPLAY
working with the College students
working with the College students
a collage of support for CRPS
a collage of support for CRPS
CRPS Awareness ribbon
CRPS Awareness ribbon
awareness jewelry at: Support In Jewelry on Facebook (www.facebook.com/supportinjewelry
awareness jewelry at: Support In Jewelry on Facebook (www.facebook.com/supportinjewelry
House Resolution #267 that I for Michigan in 2013
House Resolution #267 that I for Michigan in 2013
me with awareness in mind
me with awareness in mind
a GIF
a GIF
my husband & Me for CRPS Awareness
my husband & Me for CRPS Awareness
file-jan-06-9-12-00-pm

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Tears of Truth Facebook Page

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Instagram RASEforCRPS

‪#internationaldisabilityday deafness & chronic pain illnesses,don’t define me.I use assistive devices to keep hope alive.I try to do things to help others also to keep their hope alive. Don’t ever give up.Don’t ever let anyone make you feel that you cannot do something! You can!‬ @invisibledisabilities
All of you who live with RSD/CRPS (like I do)...this lovely friend of mine makes these “I love you sign” Shirts and she has ORANGE for us!!! I just wanted to share this for anyone who might want one and who might want to support a Deaf owned business too!! 🤟🏼❤️🧡🧡🧡 #Repost @deafloveily with @get_repost ・・・ “Orange” You Glad It’s LOVE! ~ Here is Kellene showing her priceless face when she got her surprise LOVE shirt in the mail. deafloveILY never forgets the generosity and support that she extended to this brand while spreading LOVE in Dallas. You were such a wonderful addition to our team on that day and your enthusiasm to help spread LOVE was noted. We truly do appreciate you, Kellene, and may you always be reminded of that. Love does begin with you. Always keep shining and proud of all your recent accomplishments through studying ASL! God bless and much LOVE to you! 🤟🏻🧡 ~ #deafloveILY #deafLOVE #spreadthelove #lovebeginswithyou #youmatter #beautifulsoul #Dallas #LoneStarLove #interpreter #makingadifference #shineforth #spreadkindness #community #support #thankyou #asl #signlanguage #ily #love
‪#wearthemsharethem #wearthemsharethem4crps #wearthemsharethemforcrps19 #rsd #crps #crpsawarenessmonth‬ @internationalpainfoundation @invisibledisabilities
#Repost @kateceberanofans with @get_repost ・・・ I love this idea!! Tag someone in the comments and leave an emoji for them! Orrr... write your own compliment and then pass this on!! Let’s get in the habit of lifting people up!! ✨✨ #Repost @julesvonhep ・・・ Dropping this onto your scroll to remind you that our appearance does not define who we are, so why do we comment on others so much in society? And while I understand it’s nice to hear something positive about how we look, it’s not the be all and end all. There are plenty of other ways we can spread the good vibes and positive energy that help others glow from the inside babe. Tag a friend below with the ❤️💚💟 that you want to say to them and pass on the goodness.
#rsd #crps #awarenessmonth if you don’t what what my worst painful illness is....you’re very lucky!🔥🔥🎗🎗🎗🎗🎗#nervepain
For Our friends & family who have passed away. We are thinking of them especially during this RSD/CRPS Awarenress month... #rsd #crps
Description: hey, it’s me, Suzy! I’m wearing an RSD/CRPS Awarenress shirt. I live with several high impact painful illnesses, but this is the worst & most painful. I have long dark hair and dark eyes. I’m teaching a few ASL signs for #pain and #awareness #signlanguage #deaf #hoh #hardofhearing #deaftalent #deaf-pride #hearingaids #signing #asl #rsd #crps #chronicpain #spoonie #americansignlanguage #deafpride #justforfun #deafcan #tiktok #deafculture #deaf #videocreator #youtube #deafawareness #tiktokcreator at asl_suzyq & #youtuber at ASLSuzyQ @invisibledisabilities
My arm hurts so badly! No broken bones though... just added pain after falling last Sunday evening 😓#rsd #crps #pain
I fell and that was 2 days ago. I’ve been in horrible pain and lots of swelling and bruising. I had 4 Xrays today and even if. I thing is broken, I’m in such pain...& extra pain!! Oh My Gosh! RSD/CRPS Awarenress month 2019 !! ‪#wearthemsharethem #wearthemsharethem4crps #wearthemsharethemforcrps19 #rsd #crps #crpsawarenessmonth‬ @internationalpainfoundation @invisibledisabilities
Please visit: http://lddy.no/b0u6 ****** Get My ID” and use this link & put in “SS” as your code! I got my medical ID bracelets from this company! Honestly, they have really nice and pretty items or as plain as you want! It’s all attached to one profile! I also got a sleeve for my Apple Watch! I thought if something happens to me, I want the paramedics to know that I’m Deaf/HoH too, so I had that also put on my bracelet!! Like I said, everything is attached to one profile !! Don’t forget to use code SS and go check out the amazing ID sleeves and bracelets/jewelry/sports bands at: “ http://lddy.no/b0u6 “#getmyid @getmyid #medicalid #deaf #hoh bracelet with #invisibledisabilities #invisibleillnrsses #chronicillness #rsd #crps #eds 4 #cholesteatoma #chiari #dysautonomia #pots

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