Part of Two Worlds


Hello Luvs,

Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally deaf. I can hear various pitches, frequencies and sounds. With my hearing aids in, I can hear a bit more of the letters and words in normal conversation. But add in background noise and people who mumble or talk very fast. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces then trying to “fill in the missing pieces”.

In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 4 or 5. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, I did feel better, but each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 9 years old. They were surgically placed multiple times and for several years.

Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.

I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural moderate/severe hearing loss in both of my ears L>R. Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.

It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.

Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.

The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.

Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!

I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!

I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.

I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.

Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.

After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.

I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.

Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!

I have a Facebook page at: Link to my ASLSUZYQ Facebook page

I have a Facebook group called “ASLExpress” at:Link to join Facebook group ASL Express

Lastly, I have an ASL group for allowing people to post ASL covers in a safe place, called “ASL Song” at: Link to ASL Song Facebook group

“Silent Impressions Productions” & I’m 2nd left
Me Interpreting at church before MVA
Me Interpreting a Song in “Silent Praise@ group

Me working at Deaf preschool
I was in newspaper when I taught elementary kids

My hearing aids

Health experts offer solutions for unintended consequences of opioid crackdown | Fox News


Hello Luvs,

This information came to me via an email & so I wanted to share it with you:

The most urgently needed first step to addressing the misunderstandings about Centers for Disease and Prevention opioid prescribing guidelines, many clinicians and health experts say, is for the agency to clarify – in a high-profile way– what the guidelines were meant, and not meant, to do.
— Read on www.foxnews.com/health/undoing-the-harm-of-the-response-to-the-opioid-overdose-epidemic-health-experts-suggest-solutions.amp

Also, here is The Fox News Sequence of Stories Regarding the Opioid Hysteria & Chronic Pain Patients .

One of several very special physicians, who’ve been helping fight for the rights of Drs and chronic pain patients is Dr Stefan Kertesz, MD. He is quoted in this article on Fox News:

  • “We’re targeting the most vulnerable and sickest people who have been on opioids a long time”.

Dr. Stefan Kertesz, addiction specialist and professor at the University of Alabama at Birmingham School of Medicine.

Richard Lawhern, a very staunch advocate for chronic pain patient community; is also quoted in this report. He is also advocating for his wife daughter, who live with chronic pain. Here is the quote from Richard aka “Red” Lawhern:

  • “The [CDC opioid guideline] document is fatally flawed and needs to be withdrawn for a major revision in an open public process by qualified experts in community practice for chronic pain treatment, assisted by representatives or advocates from chronic pain communities.”

— Richard Lawhern

Lastly, Lauren Deluca, founder of Chronic Illness Advocacy & Awareness Group“,(an ever growing & popular Non profit 501/3c) is quoted here:

  • “Too many flawed approaches and policies targeting pain patients, she said, “will take many years to undo, but we can’t wait years.”
  • She also was quoted as saying this: I myself was a healthy 36-year-old professional embarking on starting a family and in a blink of an eye my life was destroyed due to a denial of care,” Deluca said. “It’s not just about pain; it’s about quality of life. Now we are teaching doctors to ignore pain, which not only leaves the patient suffering but likely will lead to many not getting diagnosed, therefore not only will they not receive pain medications they will not even receive basic care.”

Please read the entire Fox News series of three stories. They are focused on different aspects of this Opioid Hysteria. Also the lack of treatment and compassionate care for the chronic pain community. *The current story, (3rd in a sequence of three), and the other stories in the sequence can be located above. They are the first two, blue hyperlinks, near the top of this blog post.

Lastly, I wanted to share something on the same subject but different platform. As I mentioned above, Lauren Deluca is the founder of CIAAG. (a Non Profit 501 c-3. The link to her group website is above, but let me add it here for you as well: Chronic Illnesses Advocacy: & Awareness Group)

Link to The Documentary Trailer “Untreated: The Healthcare Crisis”

She recently attended an International Meeting with the United Nations in Vienna. According to her website, Lauren spoke about the inhumane  treatment chronic pain patients are facing due to the ‘Opioid Crisis’ in the United States. 

Here’s is a link to get you to a YouTube video that shows her speaking in person at the event:

United Nations Office of Drugs and Crime: 61st Commission on Narcotic Drugs

Please look over everything, that I’ve tried to present to you in one neat little blog post. I hope that you feel updated and possibly more optimistic about the changes coming in this New Year, 2019.

Something must be done to change the deplorable conditions that have been put upon the chronic pain community! These great leaders and others, working together as a united front; that is how we are going to help make the changes that we need to see happen this new year!

Thank you for coming back to visit and read “Tears of Truth”.

They Fell like Dominos: My License, My Certification, My Profession


Hello Luvs,This blog post is actually something that was written and sent to me by Dr Mark Ibsen, MD, a physician from Helena, MT. He wrote and says:

“I had similar experience. 
Guilty. 
Not even “guilty until proven innocent”
Just guilty. 
Once they set their sights on you,
You
Are
Fkkd. 

This system is feudal. 
Primitive. 
Insensitive. 
Ineffective. 
Unchecked, as in no checks or balances. 
Run by appointed people who are completely unaccountable. 
No recourse. 
In the name of “safety”, 
With no evidence of harm. 
Like a trip to the Gulag. 

The key is for patients to realize that doctors have become so vulnerable that we cannot risk ANY exposure to ANY accusations. 
A risk-averse environment due to the hostile regulatory environment we now have. 

So, as more and more patients despair over being abandoned by this system, the sacred physician patient relationship is further tarnished. 

I, for one, will continue to stand by the patients I can, and pray for those I cannot.” 

Here’s the article that accompanied the email from Dr Mark Ibsen, MD:

They Fell like Dominos: My License, My Certification, My Profession

Mark Ibsen MD
Helena MT

Nightmare of A Pain Refugee


Hello Luvs,

This Youtube video was sent to me by my friend, colleague and mentor ; Dr Mark Ibsen MD, from Helena MT.

This brilliant talk by Hooman Noorchashm MD

Discussed the nightmare in his life from interacting with Brigham and Women’s hospital, after his wife’s cancer was spread by a surgical procedure( morcellation). 
They endured ridicule and shunning. 
The nightmare of pain refugees is a parallel ethical quandary.  You can watch it here or click on the link below that:
Please 
Watch
Digest
And address your ethical gaps. 
**Who watches out for the patient?
MMA?
Bome?
Public officials?
Elected officials?
AMA?
Journalists?
Activists?
Insurance companies?
Agents?
Mark Ibsen MD. 
Helena Mt. 

AMA Guidelines


Hello Luvs,

I wanted to make sure that you all have heard about the new AMA Resolutions, regarding the CDC Guidelines for opioid prescribing? The guidelines that have been taken as the “word and the law” by many pain management physicians and others.

Those CDC Guidelines are and were supposed to be voluntary and just be what they’re called, “Guidelines”. Doctors, pharmacists and government officials have been turning them into “law”. Many people in the chronic pain community have been negatively affected, including me!

I wanted to post a copy of just the AMA resolutions that pertain to us; the chronic pain community. Below I will have that available for you to print. You should take it with you to each Dr appointment & especially your pain physician. But first let me give you the link to the full AMA Resolutions here: The AMA Resolutions for Chronic Pain Patients

*(The above link is working again)

***Also, I’ve posted just the AMA Resolutions pertaining to the chronic pain patients: Please be sure to print out and take to each of your physicians & especially your pain Physician:

Sending Hope, Light & Peace!

Suzanne

Letter To Brandeis University


 The letter below was written by Richard “Red” Lawhern & signed by many Physicians, Pharmacists, Nurses and pain patients/Advocates (Including Me). It was sent approximately October 2017. Here’s a full article from the Pain News Network about it: https://www.painnewsnetwork.org/stories/2017/10/3/patient-advocates-call-on-brandeis-to-fire-kolodny and below is the letter in full, and which I signed:(my name is in bold print just here to share with you)….sadly, it didn’t do anything, but seemed to give Kolodny more resolve. We need to keep fighting this! We cannot give up. I’ve lost my LA/ER pain meds now and I’m not stopping the fight until my last breath. Here’s the letter in full:

To:  Ronald D. Liebowitz, President, Brandeis University [president@brandeis.edu]

       Nancy Winship, Chief Philanthropic Adviser to the President, Brandeis University 

winship@brandeis.edu  

       Constance Horgan, Founding Director, Brandeis University Institute for Behavioral Health,  [horgan@brandeis.edu]

        David Weil, Dean, The Heller School of Social Policy and Manageme  [davweil@brandeis.edu]

       Mark Allen Surchin, President, Brandeis Alumni Association msurchin@goodmans.ca

    To the Administration of Brandeis University,

I write as corresponding secretary of the Opioid Policy Correspondents List.  We are a group of medical professionals, healthcare writers, social media group moderators, knowledgeable chronic pain patients and family members.  This group of volunteers receives no funding from any source.

We call upon the Opioid Research Collaborative and Brandeis University to immediately reevaluate your relationship with Dr. Andrew Kolodny, MD and to consider termination of his relationship with Brandeis.  The basis of our request is as follows:

   1.  Many of us are patients dealing with medical disorders thatcause levels of intractable pain among the most severe known to medical practice.  Others are physicians and nurses who have treated such disorders, most of which are incurable at the present state of medical knowledge.  Several of us have published work on this area of public policy and are highly conversant with the practice standards issues involved.

   2.  For millions of Americans, prescription opioid analgesic medications are a central element of patient pain management plans.  Without compassionate care employing these analgesics, many tens (perhaps hundreds) of thousands of patients will lapse into agony and disability.  Some will very likely die. We have each been witness already to multiple unnecessary deaths reported in social media and in articles by medical professionals. 

   3.  Chronic pain patients are increasingly being denied access to these essential life supports — in large measure due to the actions and advocacy of Dr. Andrew Kolodny and like-minded others. 

   4.  Because of genetic polymorphism, many pain patients are “hyper metabolizers” or “poor metabolizers” of one or more opioid medications.  Opioids are broken down in their livers at much faster or slower rates than in average patients.  To manage their pain, many require much higher doses than the 90 Morphine Milligram Equivalent Daily Dose (MMEDD) threshold of risk that is asserted in the March 2016 CDC opioid prescription guidelines.  No provision is made in the guidelines for hundreds of thousands of such people.  Based on his published work, Dr. Kolodny seems to ignore that such people even exist, despite the well established body of science thatdetails their conditions.

   5.  Dr. Kolodny has been prominent in a National campaign to deny chronic pain patients even minimal management of their pain.  His actions are directed toward forcing draconian restrictions or outright withdrawal of this class of medications from medical practice. He calls for forced tapering of patients formerly prescribed opioids. Policy positions for which he advocates are leading to the deaths of hundreds of chronic pain patients by suicide or pain-related heart failure and medical collapse — also incontestable facts that Kolodny has publicly denied.

   6.  Dr. Kolodny was a central figure in panels that wrote the 2016 CDC opioid guidelines.  The resulting document is widely understood by medical professionals to be profoundly flawed and actively dangerous.  The guidelines incorporate gross errors, anti-opioid bias, cherry-picking of published findings to support a political agenda, and omission of pertinent research thatcontradicts guideline recommendations.  As a consequence of these distortions and of a related US DEA witch hunt against pain doctors, large numbers of physicians are leaving pain management and hundreds of thousands of patients are being deserted and abused across America.

   7.  Dr. Kolodny may also have failed to acknowledge financial and professional conflicts of interest incompatible with the work he was hired to perform at Brandeis. He helped to found and runPhysicians for Responsible Opioid Prescribing (PROP), an anti-opioid lobbying group.  This organization has several times petitioned the FDA to restrict opioids (many aspects of PROP petitions have been outright rejected as unfounded).   He has also been Chief Medical Officer for Phoenix House, a chain of addiction treatment centers which has been challenged over deaths among those they have treated and released without follow-up or community support.   He has represented the interests of insurance industry groups that seek to deny coverage to chronic pain patients because of associated expenses. None of these affiliations is compatible with balanced or science-based positions on opioid policy.

   8. Some who have described Dr. Kolodny in public press have characterized him as “controversial”.  This designation is entirely too kind.  Among people in pain, he is one of the most polarizing and hated figures in medicine.  His public statements are widely rejected by those whom they directly affect.

   9.  Although Dr. Kolodny has a work history in public health and addiction psychiatry, he is neither qualified nor Board Certified in pain management — a closely related field that has been profoundly and negatively impacted by his assertions concerning public policy.  From his published articles and interviews, it is clear to many readers that he knows or cares little about chronic pain patients and their treatment.  A lot of what he thinks he knows about addiction is unsupported or contradicted by medical evidence and by the lived experience of many thousands of patients.    

  10.  In our view and those of many people whom he has harmed, Dr. Kolodny makes no positive contribution to the work or reputation of Brandeis or its research centers.  To the contrary, we believe it is ethically and morally imperative that he be dismissed immediately from the University, before his presence further damages both your reputation and your financial endowments.  We urge you to engage staff in a due-diligence review of his published positions and advocacy, to verify the concerns we have offered above.  

You surely cannot align yourselves with someone who has made the following kinds of public statements:

“We lack evidence that opioids help chronic pain. Evidence is mounting that tapering improves pain and function.”   [From a Tweet by Dr. Kolodny addressing his statements in a CNN article at http://www.cnn.com/2017/07/17/health/chronic-pain-opioid-tapering-study/index.html ]

“When we talk about opioid pain medications, drugs like hydrocodone and oxycodone, we’re talking about drugs that are made from opium the same way that heroin is made from opium.  The effect that hydrocodone and oxycodone produce in the brain are indistinguishable from the effects that are produced by heroin.  [When] We talk about opioid pain medicines we are essentially talking about heroin pills…”  Summer 2017 issue of Heller Magazine

“Prescribing opioids for chronic pain is pennywise and pound foolish….” …”overprescribing of opioids is associated with sharp increases in the prevalence of opioid addiction, a chronic disease that is expensive to treat and strains the economy in many other ways. Some of these costs were nicely outlined in a recent New York Times article called “The Soaring Cost of the Opioid Economy.” 

“We’re just talking about the economic costs but we also have to consider human costs. By prescribing opioids to chronic pain patients, a treatment that’s unlikely to work and may even worsen pain, the medical community is undertreating pain and failing in its responsibility to ease suffering. And if the pain patient becomes opioid addicted, they’ll be left with a devastating chronic disease that may kill them. Of course, there’s also the collateral suffering experienced by friends and family members, especially when an opioid addicted individual dies from an overdose.” https://www.centerforhealthjournalism.org/2013/10/24/qa-andrew-kolodny-busting-pain-medicine-myths-0

 

“Outside of palliative care, dangerously high doses should be reduced even if patient refuses.  Where exactly is this done in a risky way?” wrote Andrew Kolodny, MD, Executive Director of Physicians for Responsible Opioid Prescribing (PROP).  “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion. Where is this happening?”   

https://www.painnewsnetwork.org/stories/2017/7/20/prop-founder-calls-for-forced-opioid-tapering

 

 

 

Among many published articles that contradict positions advocated by Dr. Kolodny are the following:

Neat, Plausible, and Generally Wrong: A Response to the CDC Recommendations for Chronic Opioid Use, by Stephen A. Martin, MD, EdM;  Ruth A. Potee, MD, DABAM; and  Andrew Lazris, MD.  https://medium.com/@stmartin/neat-plausible-and-generally-wrong-a-response-to-the-cdc-recommendations-for-chronic-opioid-use-5c9d9d319f71

Opioid Abuse in Chronic Pain — Misconceptions and Mitigation Strategies, Nora D. Volkow, MD, and A. Thomas McLellan, Ph.D.  N Engl J Med 2016; 374:1253-1263, March 31, 2016.

The MEDD myth: the impact of pseudoscience on pain research and prescribing-guideline development  Jeffrey Fudin, Jacqueline Pratt Cleary, and Michael E Schatman,  J Pain Res. 2016; 9: 153–156. Reprint at Medscape:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809343/

An Opioid Quality Metric Based on Dose Alone? 80 Professionals Respond to NCQA  Stefan Kertesz, MD, MSc. Medium, March 22, 2017. https://medium.com/@StefanKertesz/an-opioid-quality-metric-based-on-dose-alone-80-professionals-respond-to-ncqa-6f9fbaa2338

Pain Wars, Suzanne Stewart, Opinion, National Pain Report, September 20, 2017,  http://nationalpainreport.com/the-pain-wars-8834381.html

Let’s Stop the Hysterical Rhetoric about the Opioid Crisis, Jeffrey A Singer, MD, Cato Institute, August 31, 2017. https://www.cato.org/publications/commentary/lets-stop-hysterical-rhetoric-about-opioid-crisis

Even the most basic due diligence will find many more substantive contradictions to Dr. Kolodny’s public statements. 

This issue is not going to go away.  Brandeis needs to act promptly and decisively to preserve your academic reputation,lest you provide a forum for biased science or fraud.  We look forward to your confirmation that action is underway to separate Dr. Kolodny from your institution.  

Note:  you may also receive amplifying letters from others among our membership.  

All of the following have authorized their do-signatures here:

 

Richard A. Lawhern, Ph.D., Healthcare author and 20-year patient advocate
Corresponding Secretary, Opioid Policy Correspondents List

 

Dr. Forest Tennant, Editor Emeritus “Practical Pain Management”

 

Dr. Aimee Chagnon, MD

 

Dr. Steven R. Henson, MD

 

Dr. Mark Ibsen, MD

 

Steven Ariens, P.D., R.Ph. Owner/Operator “Pharmacist Steve Blog”

 

Thomas N. Dikel, Ph.D., Developmental Psychopathologist; Pediatric Neuropsychologist; Adult and Child Clinical Forensic Psychologist.

 

Jon Aumann, certified in Community Based Participatory Research and as Biomedical Research Investigator

 

Kristie Walters, RN, medically retired as a chronic pain patient

 

Jennifer Barnhouse, LPN, medically retired as a chronic pain patient

 

Julianna Hodgman, RN, Chronic Pain Patient

Michelle Wagner Talley MSRC, LPC, BCPC

 

Patricia Davidson, medically retired EMT, 12 year chronic pain patient

 

Duane Pool, Former Registered Nurse, Technical Writer, Social Media Consultant

 

Kristen Ogden, Co-founder Families for Intractable Pain Relief

 

Louis Ogden, chronic pain patient and advocate

 

Sherry Sherman, CRNP, MSN, BSN, CPC, CCS, CCA, CPPM, US Pain Ambassador,            NAPW 2014 Woman of the Year 

Tammi Hale, surviving spouse of a pain patient suicide

 

Angelika Byczkowski, chronic pain patient, advocate, writer, and blogger

 

Donna Corley, Co-director ASAP – Arachnoiditis Society for Awareness and Prevention  

 

Denise R. Molohon, LTCP, CLTC, chronic pain patient, patient advocate: ASAP, Arachnoiditis Society for Awareness & Prevention

 

Susan J Elliott, chronic pain patient

 

Duff Lambros, chronic pain patient stable on opioids over 20-years of treatment 

 

Suzanne Stewart, chronic pain patient, patient health advocate, CRPS Mentor, blogger & freelance writer (>30 articles in National Pain Report).

Mark J. Zobrowski, chronic pain patient and advocate

 

Spencer Dunstan: chronic pain patient and advocate

 

Sandie Hamilton, Community Care Coordinator, Hope Outreach Ministries

 

Timothy E. Mason, BA Chemistry, Research Chemist

 

Kevin Mooney, chronic pain patient

 

Michelle Ziemba, Writer and Editor, Chronic Pain Patient: Trigeminal Neuralgia (13.5 years),

 

Robert W. Schubring, BA, U.S. Co-Founder, GivePainAVoice

 

Gary Snook, chronic pain patient

 

Shirley Wallace, chronic pain patient

 

Sally Balsamo, chronic pain patient

 

Nancy Calahan, chronic fibromyalgia patient, prescribed Tramadol

 

Caryn Abrams, chronic pain patient

 

Sandy Hamilton, chronic pain patient

Lisa Hess, chronic pain patient

 

Steven Rock, chronic pain patient

 

Tootie Welker, MHS Rehabilitation Counseling

 

Randie Parker, chronic pain patient (diagnosed hyper-metabolizer)

Robert D. Rose, Moderator “Veterans and Americans for Equality in Healthcare” 

Lana Kirby, chronic pain advocate and activist 

Greg Downey, medically retired machinist and chronic pain patient

Shirley Wallace, chronic pain patient

Anne Fuqua, BSN, pain patient / patient advocate

Roberta Glick, chronic pain patient, social worker, advocate

Heidi Schlossberg, chronic pain patient

Christine Falk, chronic pain patient (fibromyalgia, sarcoidosis, rheumatoid arthritis, failed back surgery)

Audrey Liebl, owner of “Fibrom-L”, former EMT/firefighter, chronic pain patient and advocate since 1998

Christine Smith, B.A. Social Welfare, M.A. Rehabilitation Counseling, CVE, retired. disabled. chronic pain patient 

Kathy Kempken, chronic pain patient 14 years (trigeminal neuropathic craniofacial pain syndrome).  Fifteen years professional experience in safety, health and environmental affairs for The Boeing Company

 

Kimberly Miller, Director of Advocacy, KentuckianaFibromyalgia Support Group 

 

Stacey Milligan, chronic intractable pain patient 

Mary A Rooney, LCSW, chronic pain patient.

Theresa Boehm, chronic pain advocate

Rose Bigham, disabled chronic pain patient 

Elana Trefzer, chronic pain patient

Kena Gottier, RN, CMT-US Group Administrator, Chronic Pain Patient

Calvin Kramer, chronic pain patient

Richard L Martin,BSPharm, chronic pain advocate

David Becker, chronic pain advocate

Cathy Kean, chronic pain patient, writer, advocate

 

 

Why I Resigned From USPF


Hello Luvs,

It is with sadness that I write this blog post today. I would never intentionally hurt anyone. Therefore, any part of the following letter, that could in any way divulge information which I’m not at liberty to share; I have put “X’s” in the place of the words I had written. But I wanted my followers/friends in the pain community to know that this was the most difficult thing that I’ve ever had to do. I loved doing this volunteer work for USPF. They always told me that we were a “family”. Yet, the very day that I lost my Long acting/Extended release pain medication, I opened an email that was just the opposite of everything I thought we stood for. Since that email, I have contemplated resigning, but did not want to “hurt” anyone or do anything to leave them without enough board members etc. But from that day on, things just went down hill. Next, I saw a trailer for a movie that stars actress Karen Duffy and our Interim CEO, called “Balancing the Pain Scale”, that I found out has been in production for 2-3 years. As a Board member, I knew nothing about this movie until someone else alerted me. I went to the trailer and was saddened when I saw the words get “beyond the pill bottle” as I was losing the one thing that had given me some semblance of a life; and so are so many of you.

Lastly, I must add that in the past, I was sent copies of kind emails that pain patients would send in about me. I was also sent emails about patients who needed my help. I never received any emails/letters such as these since becoming a Board member. Not until a disgruntled pain patient who was removed from one of my groups for being disrespectful and unkind sent the interim CEO an email. This person spelled my name incorrectly as “Susan Stuart”, she obviously does not know me and did not know me at all. I felt belittled and reprimanded by being sent the code of ethics. Especially when the issues had nothing to do with USPF and I did not use my role in any conversations with that person. I did not receive a personal phone call, nor did anyone request any information or clarification regarding the absurd complaint; after my years of loyalty to USPF. Therefore, you can read the end result in my recent letter to the Board members below:

Dear Nicole, Wendy, Ellen, (XXX & XXXX,(*2 attorneys)

When I was initially asked to join the Board of Directors of the USPF, I was pleased and excited to be joining a group that I feel is  doing wonderful things and representing the interests of the pain community.

Very quickly, (XXXXXXXXX) XXXXXXXXXXXXXXXXX However, I decided to help shoulder the burden of guiding USPF through the trauma of the aftermath of XXXXX & more. Also to stay & help with USPF losing its founder and CEO. As time went on, XXXXXXXXXXXXXX kept adding up. I decided that it was my duty to stick by Nicole  & the other Board members & our legal team, to help clean up this mess & help to guide US Pain Foundation in the right direction.

I have become increasingly frustrated because everything that was promised to me upon becoming a Board member has not happened. I was told that I could represent US pain foundation at Pain week in Las Vegas 2018. I was also told that I would be put on an advisory board and be given a program of my own to run and see through to the end. I have been told repeatedly that as a Board member I cannot officially run any programs, but others do. I feel that those things I’m most passionate about are marginalized. I feel that somehow I was inadvertently sought out & appointed to the Board, because somehow, some person(s) thought that I would just agree and not ever express my own voice and opinions. But I do have opinions and a voice. I’m sad that as a board member I don’t know who any of our donors are and I didn’t find out about the movie that’s been in production for three years, I was told? There’s so many things I don’t know but then XXXX told me that “there’s no one higher than the board”? It’s a bit confusing in all honesty. I feel “kept in the dark” about many things.

One big reason or probably the that I feel the need to resign from the board of directors of the US Pain foundation starting immediately, is due to the lack of  insurance for Board members & support group members. I don’t feel “safe” being involved with voting on big decisions yet being “left in the dark” much of the time. I don’t really know where money is going or where n it comes from in all  honesty. All the things that I used to love I’m not able to do anymore because “I am a board member“.

Last of all & sadly, I received an email today with a copy of the code of ethics from Nicole. A disgruntled pain patient from Canada, sent her note full of horrible lies & accusations. I was not consulted privately via a phone call or even given the benefit of the doubt. I have never had any trouble with not one person since I joined this or any organizations. I don’t speak or claim to speak for the USPF in any of my groups that I run. I only give facts with links to back up what I say as chronic pain patient.

For all of the above reasons and due to the fact that I don’t feel respected, I must tender my resignation from the Board of Directors  of the US Pain Foundation immediately.

Sadly,

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

Recipient of USPF’s Pain Ambassador of the Year Award‘16, Mentor & Social Media Assistant RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, patient advocate for Deaf/HoH

“Out of suffering have emerged the most massive characters are seared with scars” ~Khalil Gibran~

Thank you for taking the time to let me share with you. I feel a deep sadness and broken at this time.