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


Dear Editor 


Dear Editor,

Do you remember the last time that you fell & you were bruised? Do you remember how badly it hurt, how distracting it was, how you couldn’t get your mind off of the pain? But after awhile you were feeling better and you were glad that the pain went away. You could get on with your life. 

Now imagine if that pain, but worse, never went away. 

That’s what it’s like to live with chronic pain. I have lived with chronic pain since 2002, after a man ran through a red light and “T-boned” our car. I’m not alone, because 100 million Americans live with chronic daily pain. That’s more than the number of Americans living with heart disease, diabetes and cancer combined. In terms of impact, chronic pain is the leading cause of long term disability and its cost (including lost productivity and treatment expenses) is higher than $635 billion annually. 

Pain has affected every aspect of my and my family’s life. I’ve not been able to work, and a large part of our expenses goes towards my healthcare. Also, the number of office visits has now doubled because of these new CDC guidelines. That means double co-pays, double the amount of time driving and having my husband leave work to take me to the Dr. appointments. My husband is retiring and instead of taking it easy, he takes care of all the household responsibilities. Therefore, I miss out in spending that time with him. I also cannot do the things that I used to love, like going shopping with my friends. Going out to lunch with the girls, and going for long walks. I’ll most likely never be able to actually walk on a beach while being barefoot in the sand.

Despite the prevalence and consequence of chronic pain, people with pain are very much overlooked and under treated. People who live with daily chronic pain are often labeled as “lazy” or over dramatic and not taken seriously. Very few treatments such as physical therapy and even most durable medical equipment are not fully covered by insurance. As of today, less than 1% of the National Institute of Health’s budget goes towards pain research.

It’s no surprise that those living with daily pain are suffering-and not just physically. In one survey, more than half of the respondents felt that they had little or no control over their pain and more than ¾ reported feeling depressed. In fact, research has shown that Chronic Pain patients are twice as likely to commit suicide as the average person. Many chronic pain patients feel alone with their pain and they become cut-off from society and friendships that they once cherished. I can speak from experience when discussing the feelings of aloneness. You can have loving people in your immediate household, but still feel alone with the pain. I speak of this from experience because I was feeling isolated and as though no one was listening to my pleas. That was until I got connected to and started volunteering for the U.S. Pain Foundation.

People with pain, like me deserve better. My family deserves better. Imagine if we took that $635 billion in lost productivity and health care costs and invested it in preventative care, new treatments, research and emotional support for pain patients? In honor of September as Pain Awareness Month, I encourage all Michiganders to join me in advocating for positive change for the pain community. Our Governor, Rick Snyder and the Supervisor of Canton Twp. Michigan have joined me in helping to raise awareness this month. They’ve each signed a Proclamation & a Resolution proclaiming that in Canton Twp.and in all of our great state of Michigan, they are recognizing September as “Pain Awareness Month” for 2017! To learn more or to become involved, visit: http://www.uspainawarenessmonth.org ,

Sincerely,

Suzanne Stewart 

Canton, MI

Pain Awareness Month, Take Our Hand!



Do you know that according to the Institute of Medicine, there are approximately 100 million chronic pain patients in the U.S.A.? Also, 20% of children in America have chronic pain. “Chronic pain” is described as pain that has continued for longer than 3 months. Those of us who live with pain know how much it impacts our lives and the lives of our families/friends. It affects every aspect of our lives including the ability to work, sleep and go out and have social interactions and activities. Did you know also that chronic pain costs  our nation an estimated 560 to 630 billion dollars annually in medical expenses, lost wages and productivity?

Well, my friends, as an Ambassador for Michigan, of the U.S. Pain Foundation, I’m here as a chronic pain patient myself to tell you that you can make a difference.  As Margaret Mead, a famous anthropologist, once said, “Never Doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has”.  The U.S. pain foundation which started out as one person’s dream, has turned into a mission. One which is to  inform, empower and advocate on behalf of the over 90,000 members throughout the country and all those who live with chronic pain. The U.S. Pain foundation also provides education on pain management skills and constructive ways to cope with pain and find fulfillment in life.

We can find fulfillment in life and we can be “taken by the hand” of a beautiful non profit organization, such as this.  They help us find that fulfillment, by providing chronic pain patients with increased awareness about the effects of chronic pain.  This in turn, helps result in increase access to quality pain care and empowerment for those living in pain. So, please take our hand and join together, starting this September 1st, 2017.  This is the beginning of “PAIN AWARENESS MONTH”.  Instead of running through those Facebook, Twitter and Instagram messages from other pain warriors who are participating in “Pain Awareness Month”; why don’t you take our hand and join us?

Throughout the month there are a number of things that you can become involved with. We have many awareness events and projects that you can be a part of, right from the comfort of your own home.  If you can not get out, then join in the awareness of chronic pain online. Post Memes, stories and even your story to help make others aware of our chronic situations.  Take the negative out and add some positivity and then you will get “HOPE”. You can “Beautify in Blue”; by getting permission and then putting up ribbons and signs around your community.  Another choice, if you live near something special and beautiful, such as: Mackinaw Bridge in MI, Niagara Falls in NY, or any landmark; you can get permission and ask the city to “Light Up the Landmarks” for Pain Awareness Month. Turn the lights blue on those landmarks and shout to the rooftops that “We are a part of the 100 million chronic pain patients in the USA and we want to be seen and heard”! There are also many other things that are very easy to do. Please feel free to ask me about the awareness events and fundraisers for the U.S. Pain Foundation during Pain Awareness month and/or any other time throughout the year.  You can do something as easy, like I mentioned above; like posting about your pain and Pain Awareness month on Instagram, Twitter, Facebook, Google+ and more. The list and the possibilities are endless when you just try to make HOPE a verb and DO something about it.

Pain Awareness month will start on September 1st, 2017.  It continues throughout the entire month of September each year. It doesn’t stop for us, after the month of September has ended.  We continue to support and empower you throughout the months and years. Consider being a part of something bigger and better. Think about joining a wonderful “family” of pain warriors who all help each other and help others as well.  My hero, Helen Keller, once said “Alone we can do so little; together we can do so much”.  So starting with this September, let’s all join forces and let the rest of America and the world know who we are and what chronic pain is all about.  We need you and who doesn’t like to be needed? (For information about PAM please contact me at: @PeopleInPainUnite or @RASEforCRPS on Twitter or my email at: RASEforCRPS@yahoo.com. You may also contact the U.S. Pain Foundation at:  www.uspainfoundation.org).photo sep 01, 3 13 51 am.jpg

 

#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:

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

We Must ROAR 🐯 for PAM


Pain Awareness Month is fast approaching! September is the month for spreading awareness! This is an American Sign Language video of the song “Roar” , by Katy Perry. Let’s be strong and try to reach out to others living with chronic pain. (This will take you to my YouTube page “ASLSUZYQ”, feel free to Subscribe! Thank you!)