Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain and I’m a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


#WhyISign


This is my story for # Why I Sign? Transcript: Hello,, my name is Suzanne, last name Stewart. #Why I sign? I have a story: I was born Hearing & my family is hearing. I’m the past, I babysat for 6 Deaf kids, children. They lived next door. A Deaf family, full Deaf with 6 Deaf children. One day I was babysitting & something happened. But before that, we were playing games, learning signs for colors, numbers, Fingerspelling, days, months and family signs and different things. One day, one of the little girls, ohh about 9 years old was behaving badly. I said “come here… go to your room and stay there”. She was crying a little bit. She ran out and came to me bawling. She told me something but it went over my head and I understood nothing! I was thinking “hmmm… No, you need to go back to your room and stay there. She ran out to me again bawling, crying so hard. I said to her, “what’s wrong? What’s wrong? What happened? Whaaat? She started to slowly Fingerspell “b-e-e in my r-o-o-m”! Ah haa “Wonderful!!” I finally understood what was wrong! “Ohhh..Poor baby!” I felt awful! …..I said “I’m so sorry, I feel awful!”  I said “please forgive me”? She said it was Ok, she was fine! I became more fascinated in learning ASL/Sign language. I just love it so much! (*No English word exactly for “hand kiss”- but it kinda means I just love it so much” or “it’s my favorite”) … I got books and learned more signs on my own. I went to College and graduated 1985! Then I worked as a hospital Interpreter, a school Interpreter and I worked at a Deaf school in AZ. I flew to Arizona and lived there for 2 years! I worked there and enjoyed it and had so much fun! I missed my family so I went back home.Then in 2002, I was in a very bad car accident. I had so many injuries, it was bad. So many pain problems and 10 surgeries, they kept adding up! My hearing deteriorated! Isn’t it Strange for an Interpreter to get hearing loss? It’s true, I have two hearing aids. But it doesn’t matter,I’m fine. I don’t care. I’m happy and proud! I already know ASL/Sign language! THATS #WHYISIGN ….bye ..Love you!

Click here for video #Whyisign
Made with #VideoShow-https://itunes.apple.com/app/id1112850631

Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

Please Take 1 Minute


I am excited to announce that I have been nominated for the Wego health “Best in show-Blog” award category in the sixth annual Wego health awards.

Wego helped is a mission driven Company connecting healthcare with the experience, skills, and insight of patient leaders. They are the worlds largest network of patient leaders, working across virtually all health conditions and topics. Click here: to learn more about their patient leader network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of Wego health: to empower the patient voice. The 16 award categories, the Wego health awards are the only awards across all conditions and platforms, that recognize the over 100,000 inspiring patient leaders who raise awareness, share information, and support their communities-but often without recognition.

First, I would like to say “thank you” to those who nominated me for this award. I appreciate the time, the kindness in your heart and thoughtfulness that it took to nominate me & this Blog, “Tears of Truth”. To be nominated for this award category “Best in Show-Blog” means so much to me. It means that I am reaching people and they enjoy reading what I write. I truly pray that I am helping people and reaching people who otherwise wouldn’t get some of the information that I offer and share. In being a patient leader I have gotten to work with many wonderful people, made new friends, and have had chances to do research on bio similar medications and other subjects to do with many aspects of various illnesses.

This year, the 16 Wego health award winners will be honored at the 5th annual patient advocacy summit in Washington, DC October 23 and 24th, 2017. I would love to be able to attend this advocacy event and collaborate with the industry leaders. If you’d like more information about the summit you can learn more if you Click here

I am now looking to my incredibly supportive network to help endorse me for this award. There is an easy way to endorse it only takes seconds of your time!  Click here to be taken to my Wego Health awards profile where you can click “Endorse” under my nominee photo.

If I had ever supported you, made you laugh, or inspired you to keep fighting-please consider endorsing me for this award? In advance, I would like to say once more “thank you so much”. Without you I wouldn’t have a popular blog and I wouldn’t be nominated for this honorable award.

@WEGOHealth

Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

Please Help This Blog Win?


Hello Luvs!

This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!

 Here’s the link:

https://awards.wegohealth.com/nominees/562