Dear Senator


Hello Luvs,

Below is a copy of a letter that I’m sending to my Senator and possibly to a few other legislators. Of course, I will change it up a bit for the others.

Please give me any constructive feedback or ideas to add to the letter that I’ve written. Be kind and let me know what you think? Thank you so much! I appreciate it.

I have the letter that I got back from the Senator, in response to my first letter to her almost a year ago! So here’s my letter to her, straight out of my email draft! Thank you again.

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Dear Senator Stabinaw,

Thank you for your response to my 1st letter. Although I think it must have been a response to someone else’s letter to you? My letter was addressing the 26 million intractable chronic pain patients who now find themselves cut off from any kind of opioid pain relief therapy. There is a place for opioids, when many other methods of pain relief have been tried and failed for one reason or another. The opioid “crisis” has truly zero to 1% to do with chronic pain patients and has much more to do with the illegal fentanyl and Cara-fentanyl brought over to the US from China etc.

I was asking you to help the chronic intractable pain patients in our state and in the USA. They are being forgotten in all of this. The government needs to stay out of the Dr. /patient relationships & exam rooms. That’s a wonderful thing to stop drug abuse and substance abuse disorder. But not at the expense, loss and inhumane treatment of the chronic intractable pain patients lives.

The chronic pain community is seeing a rise in suicides with the gross reduction in opioid prescribing. We had another fatality just this week (April 2018), I will include a link to that story with this letter. A young mother who loved her 11 year old boy and her husband, was ill before & during every pain Dr. visit (due to anxiety/fear of upcoming appointment), most recently especially.

Patients are experiencing PTSD symptoms as they await the cut off and/or tapering of their safe and effective, long term opioid pain medications. These persons are not afraid of losing the opioid pain meds. They’re afraid of living with the excruciating & horrible intractable pain on a daily basis for the resting their lives.

Please help these patients by also alleviating the fear of career loss or even jail time; for the Drs who prescribe these medications. The pain specialist goes to school for sometimes 15 years, to learn how to treat these patients. But now, legislators are taking over this “specialist” role. If you’d like to sit down with me, hear my story etc; I’d be more than happy to come. I’d love the opportunity to speak with you and anyone else who can help the chronic intractable pain patients in Michigan & the USA.

Thank you for your time. I’ve enclosed the links to a couple of stories on YouTube , the Pain News Network & the National Pain Report.

1. https://youtu.be/u4vHSLeTe-s

2. https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935

3.https://www.painnewsnetwork.org/stories/2018/4/30/death-of-pain-patient-blamed-on-dea#.Wuf0unJ0GX8.twitter=

4. https://.com/2017/12/14/pain-acceptance-the-newest-lie/

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

U.S. Pain Fdn. Ambassador/Advocate/Board Member, Recipient of Pain Ambassador of the Year Award‘16, Mentor for CRPS patients RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL

DISCLAIMER: The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We can not and do not give you medical advice. The information in this e mail should not be considered complete. Information obtained in this e mail is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this e mail. If you think you may have a medical emergency, call your doctor or 911 immediately. US Pain Foundation inc. does not represent to be an authority but is just helping pass information from other organizations, advocates and or websites.

On Jan 30, 2018, at 5:36 PM, Senator Debbie Stabenow <senator@stabenow.senate.gov> wrote:

Dear Suzanne,

Thank you for contacting me about the treatment and prevention of drug addiction. I share your support for strengthening programs that help individuals overcome addiction and lead healthy and productive lives.

That is why I cosponsored the Comprehensive Addiction Recovery Act (CARA), which was signed into law on July 22, 2016. CARA expands and strengthens substance abuse prevention, education, treatment, and monitoring programs around the country.

Substance abuse and addiction have devastating physical and mental consequences for millions of Americans. Drug abuse has increased dramatically nationwide, and in Michigan, the drug overdose death rate is above the national average. That is why I fought for passage of a demonstration project based on my bipartisan bill, the Excellence in Mental Health Act, which will expand access to mental health and substance abuse services in the community and ensure that more people can get the quality care that they need. I have also fought to strengthen substance abuse prevention and treatment through the efforts of the Substance Abuse and Mental Health Services Administration and the National Institute on Alcohol Abuse and Alcoholism.

Thank you again for contacting me. Please continue to keep me informed about issues of concern to you and your family.

Sincerely,

Debbie Stabenow

United States Senator

U.S. Senator Debbie Stabenow

The United States Senate •Washington, DC 20510

stabenow.senate.gov

A Million Dreams & Story of My Life -ASL


Hello Luvs,

I have been working on a couple of new song covers in American Sign Language. I thought I’d share them with you as I love to do. This on is the song called “The Story of My Life” by a group called, “One Direction” and if you click on the blue link, it will take you directly to that video.The Story of My Life – ASL

The second one that I have done most recently, is called “A Million Dreams”. It is sung by Hugh Jackman & Michele Williams. It’s a very popular and lovely song from the newest hit movie, “The Greatest Showman”! If you click on the name of this song in the blue link, it will take you again, directly to my You Tube Channel. Please remember to Subscribe to my Channel and you can click the 🛎 bell , if you’d like to be notified when I do new songs in ASL. If you don’t want the notifications, you can still Subscribe, but don’t click on the 🛎 bell, that sends the notifications. Also, please “LIKE” the videos if you enjoyed watching them. Please also “LIKE” the videos if you didn’t enjoy watching! 😂

Here’s the second song in ASL: “A Million Dreams”:

A MiilionDreams – ASL

Thank you so much for visiting my blog and I’ll be back soon with another article for you!

This Me -ASL


The movie “The Greatest Showman” is a great movie! The music is beautiful. After seeing this movie (the 1st movie I’ve seen in over a year), I had to come home and gloss the song “This is Me” and then sign it & post it ChanneYoutube.com/ASLSuzyQ. I am Hard of Hearing and I can hear and feel the music but the words get “mushed” together. So I learn the words and then gloss it into ASL and then I sign it.  I am part of the Deaf and Hearing community and have been learning ASL since I was 11 years old.

Here is a very special song in American Sign Language. It’s the song from the above movie, & it’s called “This is Me.” If you enjoy my ASL videos, please Subscribe to my YouTube Channel. Again it’s at: Youtube.com/ASLSuzyQ…Thank you for visiting and watching.

photo aug 17, 8 29 39 pm (1)

ASL is a Cultural Identity


I love American Sign Language 🤟🏼 ! I am a part of the culture and I’ve been since I was 11 years old! I was mildly hard of hearing due to many ruptured eardrums, untreated. (long story-see private posts and just email me for the password. Email me at: ASLSuzyQ@gmail.com)

Hearing or loss of it, is not a handicap and neither is it a weakness or a disability. Deafness is a cultural identity. I became moderate Deaf in my right ear and Severe in my left; after a Traumatic brain injury due to a motor vehicle accident in 2002! I am proud to be in a culture of warriors and Deaf historians! I’m not totally Deaf, I can hear music but not the words exactly with the music. It’s all a bit mushed together. I miss a lot in verbal conversations. I nod my head and wish for the best. But once in awhile that may happen to me in a room of native ASL users as well. I feel a bit lost sometimes in such instances. I’m so very lucky to know what I do know about the naturally formed language of ASL. I’m fortunate for my experience as an Interpreter at a hospital and at Universities and school settings in the past. Ironic isn’t it, how life can take a turn?

But what does bother me is when people pretend to know ASL, because they know “signs”. The first lesson in ASL is that a sign does not equal a word! A sign equals a concept! I go on YouTube all of the time and I see people acting as though they know the language. They post a song and then post a “tutorial ” and then proceed to teach others incorrect signs and fake ASL; which is PSE at best. But do you know that PSE is not a language? It’s just a mush mash of signs in English word order. So then, you’ve taken a beautiful Language like ASL, and desecrated it! Anyone can do anything they want because it’s the internet. If you want to post songs and such in “Sign Language “, then by all means, feel free. Just write up a bio and explain that you’re just trying or you’re practicing your use of ASL. Say that you’re doing your best or that you are learning the language. But don’t call it ASL, unless it is. Then please do not post a tutorial unless you’re truly sure it’s correct and grammatical ASL. It is just the respectful thing to do. We don’t like our language polluted & then taught incorrectly to others who are vulnerable and learning.

I have a few videos up from at the beginning, right after my car accident and TBI. Those aren’t my very best ASL. But I always post about the reason why it’s not my best, in the comments. But I don’t make tutorials because each person may sign the same song a bit differently. It’s a choice in lots of instances; a choice of which signs for the concepts you want to convey.

Yes, please learn the beautiful language of American Sign Language, ASL! But don’t be arrogant and don’t be a student teaching other students! Let the teachers, native ASL language users, Deaf community & CODA’s teach those who wish to learn! I honestly do not mean to dissuade anyone from making videos and having fun. I only mean to please not make tutorials if you truly don’t know for sure that it’s ASL. Don’t be the “blind leading the blind”! That’s what I’m getting at most of all, I suppose.

Feel free to join my ASLExpress group on Facebook. We are a group of people who love the language of ASL. We enjoy Deaf culture and we share communications and stories in ASL. We are a group of Deaf, HH and Hearing persons who love, use and respect the language. We are a combination of all levels of ASL users; from beginners through native Deaf. We like to teach, learn and make friends.

I also have a page called “ASLSUZYQ”; on Facebook, Instagram, Musically & Tumblr! I don’t claim to know it all. I learn new signs everyday! I’m always willing to help and take advice from the Deaf”elders” in ASL! I’m actually taking an online course in ASL gloss for songs. It’s called “Beyond Words” with Rosa Lee Timm! It’s a blast, though due to chronic pain and illnesses, I’m a bit behind. Thanks to the Internet, I can go at my own pace.

One Call Away in ASL is my new ASL Cover on my YouTube Channel. This link will take you to my YouTube Channel @ASLSuzyQ, My ASLSUZYQ Youtube Channel !<br<br<br
nddaughter and I have 3! I'm teaching them ASL while they're small because young minds are like sponges. The littlest ones learn the language so fast!

Grown Up Christmas List And Two Other Holiday Songs In ASL


Here are a few Christmas songs done in American Sign Language. I am Hard of Hearing and I also used to be an Interpreter for the Deaf. I worked at a school for the Deaf in AZ and in MI, I worked as an Interpreter at University of MI hospitals for several years. I was injured in a MVA in 2002. I can no longer hear well enough, and have too much pain to hold my arms up for any length of time. I interpret songs because I learn the words first and then I feel it in my heart. I love to do this and it makes me happy. I hope you enjoy…First one is “Grown Up Christmas List” by Kelly Clarkson, the second Interpretation in American Sign Language, is “Oh Holy Night” by Mariah Carey and the Third one is “Where Are You Christmas?” by Faith Hill….Enjoy (please Subscribe to my YouTube Channel at ASLSuzyQ if you do enjoy it….thank you so much! :

 

 

 

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 & RSD/CRPS.  I’m also 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
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