What My Pain Dr Told Me


Hello Luvs,

I wanted to write to you today to share with you something that I know many of us are dealing with these days. It’s about what happened at my pain management Dr. appointment on 11-8-18. First of all, every 30 days, I have to go and endure this treatment and I live with PTSD. It always rears its ugly head the day prior to my appointment with this Dr. or any new Dr. appointments. I’ll just refer you to my other article “Down the Rabbit Hole” if you need a reminder as to what has occurred up until now.

I arrived at the appointment which was in the late morning this time. I usually go in the afternoon because mornings are difficult for me, with my pain issues. But the past 6 months or so, I’ve had horrible anxiety when I know this appointment is drawing nearer. The closer it gets, the worse I start to feel psychologically and physically with the above symptoms on top of the pain. I decided to make this appointment in the morning because I thought it would not ruin our day so much. Just “get it over with” and be done; get on with our day. But it once again, did ruin my/our day.

I’ve had this pain management Dr. since July 2015, after my other Dr. of 15 years left suddenly. At that time I had been on the fentanyl patch and the lollipops for 10 years. This Dr. told me he would only accept me if I took myself off of the lollipops and I did it. I had to suffer through physical dependence withdrawals. I did it at home with my soulmate, my husband.

I’ve never rescheduled an appointment with him, nor have I ever been late. I’ve never run out of meds or asked for them early.  He knows of every medication that I take or have taken and honestly, I don’t feel like its up to me to have to “remind” him that I sometimes take Fiorcet for Chiari Migraines. He and I had a mutual respect sort of Dr./patient relationship up until April of this year 2018.  But that day everything changed and it turned out to be nothing that I did wrong. He had forgotten that I take Fiorcet and it doesn’t always show up on MAPS (Michigan Automated Prescription Service – *explanation found here*: https://www.michigan.gov/lara/0,4601,7-154-72600_72603_55478—,00.html) because its such a low risk medication and not a high class either.  But whether it shows up on the MAPS is not up to me. Nor is it my fault in any way if it shows up or not, as long as he’s known from the beginning that I’ve been on it for more than 7 years.  This one particular day in April, he started being rude to me for no reason whatsoever. I went to my appointments in May, June and July.  But I was horribly anxious and very “ill” prior to each appointment, due to anxiety and PTSD symptoms.

This last visit was another horrible appointment and was the final one for me. I am done being treated like a criminal or an addict! I’m tired of feeling “put down”! I’ve never smoked or drank; nor have I ever taken any drugs. I received one more short acting script and now I will be tapering myself slowly off of the short acting medication as well. It will be horrible because it’s already horrible. It will be difficult and it’s already difficult.  He lied to me in July, telling me that “in Michigan, Fentanyl patch is illegal for him to prescribe (he is a pain management Dr. and Anesthesiologist MD), unless someone has malignant cancer”. I know this is not true and he told me that “I am smart and should be able to verify this online”.  I checked Michigan law and the fentanyl patch warning on the box. It says only that it is “for chronic long term moderate to severe pain that will not be going away.” If anyone has any idea where I can find this in writing; I welcome that information.

I got a letter from my GI Dr. (*see letter below) because he felt it was dangerous to take me off of the Fentanyl patch. With Gastroparesis, SIBO and Chronic Erosive Gastritis; along with EDS type 4/vascular and more, I am not able to metabolize the long acting oral meds. Believe, me, I’ve tried many things and either was allergic, got very ill, it did not help at all or it had large valleys and spikes. The patch just worked for my pain and it was the best match for me and my multiple co-morbidities.

Yesterday’s appointment he told me that “Chronic pain does not kill anyone”. I told him that I was in my recliner now 16+ hours per day due to the pain. He responded by telling me that my cardiologist should not have put me on Clonidine. I’ve been on it since 2015, but went off of it for awhile in between. He knew this also but apparently it slipped his mind because that must be what’s making me “tired.” But in reality, it’s the pain that’s keeping me down. Also, I only get about 4 hours of sleep on a good night.

My cardiologist told me to take 1/2 of only 1mg at night. He prescribed it for me and said it would help with the physical pain & dependence withdrawals. Thank goodness someone cared enough to help me a bit!

I tried to explain that I had resigned from many activities that I was able to do with the medications. He told me that none of this has to do with the medication for pain being taken away after 14 years. He went on to say that “Susan (you’d think after 3.5 years he’d get that my name is “SUZANNE” not “Susan), you and other chronic pain patients are hostages to the pain medications”. These are the same medications that he was fine with for the 3.5 years I’ve been going to him! He also knew that my history was even longer. I’ve been taking opioids since 2005, in order to have some semblance of a life. But just for the record, I’ll let you know that I tried everything else possible fir 3 years, before resorting to the opioids.

This pain management Dr. has told me all along that he cannot make my pain go away. But he can help lessen the pain by prescribing opioids. When he made the “hostage” comment, I responded with; well “instead , now I’m a hostage to the pain”. Yesterday he told us (my husband & me), that all of his patients still tell him they have pain “with or without the pain meds”. I responded by telling him “Yes, that is true, but I had a life with the meds and I have no quality of life now. The pain medication dulled the pain without ever giving me any kind of “high”. Now the pain is much more sharp, pronounced and at the front of my thoughts. I’m not able to concentrate much or put the pain in another place at the back of my brain.”

I started to explain to him that I have several “Physicians, pain physicians and nurses that are my friends online”.  I added that this past week I was diagnosed after an echocardiogram, with “left atrium enlargement”. I’ve had a heart attack, a CVA and a TIA twice. I have Atrial fibrillation, Sick Sinus Syndrome and a pacemaker since 2003. I’ve never had CHF but that’s what this means. I told him that “chronic pain can kill and under treated chronic pain can make blood sugar and blood pressure rise”, which has been happening to me.  He became very upset with me and started to pontificate about how “each symptom needs to be treated by a Dr. who takes care of that problem.  If my blood sugar is high, I need to go to a diabetes Dr. and if my blood pressure is too high, then I need that addressed by a physician who takes care of that issue. He went on to say that “chronic long term pain does not and cannot kill you.  Only acute pain can possibly make BP and HR etc. rise.” But from Dr. Tennant’s own account in his article (Practical Pain Mgmt. By Dr Forrest Tennant MD , from another article, by Pharmacist Steve Ariens, ( Harmful Effects of Untreated Pain )  and this article that I had written last year (that was also published in Ntl. Pain Report), “Chronic pain can kill” (Untreated Chronic Pain Can Lead to Sudden Cardiac Death ), he is the one who is lying.

Untreated: The Healthcare Crisis-A Documentary


There are several people and organizations making Documentaries about pain patients getting “left behind” in all of the opioid hysteria right now.  A few that I’ve personally taken an interest in, are awesome. I feel that some Organizations, are trying to sway the chronic pain community into thinking that the physicians who are afraid to treat them now with any opioid therapy are correct in doing so.  There are those who promote techniques such as “grounding”, massage therapy, acupuncture and mindfulness as relief for life long chronic & painful illnesses.  There is a place for some of those things. If it is the patients choice, they could be added to other type of medicinal therapies, such as CBD oil, Medical cannabis, Kratom and/or Opioids.  But alone, these “alternative pain control therapies ” don’t help to control chronic &/or intractable pain permanently.  They also won’t help much when someone is living with high amounts of chronic pain from several illnesses on a daily basis. In my opinion, they won’t help someone who had been doing well on other medication therapies for many years and who suddenly got force tapered or stopped from something that gave them some semblance of a life, for over a decade in many cases.

But there is a new documentary coming out soon and it appears to be one of the best that I’ve seen. It looks very professional and it is in no way a “home video” or a “YouTube” video. It appears to be very well done and I really thought the message was and is clear.  Get the government out of the Doctor and patient exam rooms and relationships. Give the physicians back the power to decide along WITH their patients, what method is best suited for the control of their pain. Keep Hollywood, Andrew Kolodny and Dr. Phil out of our personal medical histories and give the chronic pain community back their lives. We are not expendable just because many are unable to work. Most of us worked for many years and paid into the Social Security program and had to have enough “points” from working, in order to receive the SSDI. So we are not “leaches” nor are we taking from our Government.  Most have been very dedicated to helping in society and being a part of every day life. Many chronic pain patients are former chefs, Interpreters, Secretaries and even teachers. Give us the benefit of the doubt and stop treating us like we are unworthy or expendable.

This documentary “Untreated: The Healthcare Crisis” is directed and produced by Time Thread Studios & their production crew, alongside Lauren DeLuca and Jayne Flanders. Lauren & Jayne are the original founders of CIAAG or “Chronic Illness Advocacy and Awareness Group”. They have a support group online and run a Nonprofit for chronically ill and disabled persons living with pain.  I have donated a small amount of $25.00 to this documentary because I believe in it. If you can contribute in any way, even $5.00 would help. If many people could donate even that amount, it would really help in getting this documentary out to the public.  What is stated in this documentary is true; “What we have is an epidemic of ignorance and fear and its ruining healthcare “.  The epidemic is not an “Opioid Epidemic” but one of instilling fear and panic to the non-pain community so they won’t truly understand.  Not until they or someone that they love is living with daily chronic pain and suffering due to the under treatment of pain today in the USA and Canada.

You’ll see in the movie’s trailer, that even the CEO of Reckitt Benckiser, Rakesh Kapoor has stated that “every major deal we’ve done actually, has created good value for share holders”. They are the makers of Suboxone, Bupenorphrine etc.  If you read a couple of my other articles (About Suboxone, Bupenorphrine & Naloxone and another Regarding Bupenorphrine- Suboxone and also Pain, Politics, Suboxone & Bupenorphrine ) regarding these drugs made for addiction, not pain; I believe that you will see a trail of money leading directly from them to this fake and manufactured Opioid “crisis”. “The goal is profits”, it says in the documentary’s trailer. It is without regard to the millions of chronic pain patients.  This movie will show how the Government is trying to control this “crisis” by limiting the supply of opioids for the pain community. It is stated that 319 medications have “no competition”.  The question arises “Is the FDA dragging their feet?” Also you will see that physicians are afraid to prescribe pain medications and we all know that is true. Then there is this statement, that “the intentional removal of effective pain medications”…. from people who live with daily chronic and high pain illnesses, “that is the definition of torture”.

The link to “Kickstarter.com” and the movie trailer is listed below. You’ll notice on the Kickstarter website that they have goals and various gifts for supporting this film.

Please check out this documentary and lets truly try to get this movie out to the public via Netflix and other venues. This documentary has our hearts and our souls in it. It is, in my opinion, a really effective trailer and the documentary, I believe, will even exceed our expectations.  “The pendulum has swung much too far in the wrong direction”, is another quote from “Untreated: The Pain Crisis” movie trailer. Please help by any donation that you can spare and/or by sharing the link below and/or this article to people in your own pain communities.

Click below, to see the trailer:

Untreated: The Healthcare Crisis Movie Trailer

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.

Something Emotional


Hello Luvs,

So the things I’ve written lately, have been pretty “deep”; to say the least! I thought because you know that my Language is American Sign Language, and since things have been a bit “heavy”; I’d take it down a notch! I hope you enjoy this beautiful song about the crazy state of the world these days. Where the right and left are fighting and the chronic pain patients are losing life saving/giving pain medications. This song is called “Bleed the same” by Mandisa & with Toby Mac & Kirk Franklin. This is me signing in ASL to this beautiful song! I hope it lifts your spirits as it has mine!

https://youtu.be/aD1YKgpk5X0

Bleed the Same in ASL

Down The Rabbit hole


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I want to inform the pain community about my situation because this is happening to many chronic pain patients. I’ve been a voice in the pain community and now I too, am going “down the rabbit hole”! Before I become possibly incapacitated; I want you to know what is happening. For those like Kolodny, who believe that we should “get beyond the pill bottle”; I say, unless or until you are in my shoes and live with my experiences, stop preaching silly things like “pain acceptance”, will help. It cannot help all of my pain conditions combined. Stop acting like you are better, mightier or stronger because you might feel better from “grounding” (which is in essence, touching the earth with your feet, being “one with the ground/nature”, to make your pain lessen or disappear). The bottom of my feet are covered with open sores due to the stage of CRPS that I live with. This has become insane, while there are individual cases in where opioids are the preferred treatment and they do continue to reduce our pain.

*A bit of history if you want it: I won’t start at the very beginning because that would be much too long. I will tell you that I’ve been on SSDI since 1999 and initially for PTSD (*they said that I was the “worst case of childhood trauma/abuse they’d seen in 36 years) and kidney failure. Then I was hit by a car that ran through a red light. One minute my husband & I were sipping lemonade at an art fair.  The next minute, (as we travelled through a green light to have dinner afterwards) he was really bruised & shaken and I was unconscious & strapped to a back board, on route to the hospital. That experience is a story for another day. The entire auto insurance bullying and fear mongering was another traumatic debacle. These experiences have continued, one after another; which brings me to today and this article. 

After our accident in 2002 and upon being discharged from the hospital; I was sent to doctor after doctor. I was also sent to TBI rehabilitation, PT/OT and also to Tri-County pain clinic in MI. I was totally new at all of this & it was my first experience with this type of physical pain. Although, I have had 2 C-sections and I’ve lived through childhood, ex-spousal & other abuse throughout my entire life. At the pain clinic, I received various epidural nerve blocks, trigger point, cortisone and other injections. I also saw a Pain Psychologist, did Biofeedback and did many other types of therapies. The Pain Psychologist wrote in his report, by the way, that I “do not fit the profile for an addictive personality.” He attached me to an EMG type of machine where he can “see” your pain spiking via a red line going upward. Mine went off the charts. This was prior to my diagnosis’ of: systemic CRPS, EDS-4/vascular (aka Polyneuropathy in Collagen Vascular Disease), R.A., Dysatuonomia/POTs, Gastroparesis, S.I.B.O., Chiari and more. At that time though, I was diagnosed after the auto accident with: many physical injuries and a TBI. I went through 8 surgeries, 2 screws in my left shoulder, metal in my jaw, 2 AFO’s, prisms in my glasses, 2 hearing aids, a dual chamber pacemaker and a hospital bed in my home. I have a walker, loft-strand crutches, wheelchair, motorized scooter, leg braces and also knee, neck, hand and shoulder type of braces.

After going through all of the “hoops” at the pain clinic, I was found not to be a candidate for an SCS (spinal cord stimulator) nor a pain pump (intrathecal). I was diagnosed with CVID or “Combined Immune Deficiency” disease. They informed me that I would be sent back to my primary dr. because they could not give me the medication that I needed. In 2005, they were already saying that they could not prescribe pain medications (which they felt I needed) because they had to “stay under the radar of the DEA”. I went back to my PCP and for the next 10 years he prescribed pain medications.  Until one day in December of 2014, I arrived at my PCP’s office and was told that it was his last day working there. I received no other information and I was terrified because I did not know where to go or what to do. Dr. Bullach MD; promised me that he would personally make a call to my former pain clinic and Dr. Dobritt, my former pain physician. He also promised me that my treatment would remain the same under his partner. I returned the next month to see his partner and was condescended to, teased, put down, and told that “all of the other dr’s patients were “drug addicts”, “drug seekers” and unworthy people seeking pain medications. He promised to see me for a couple of months because he had known me “to be a good person” since my children were small. But over the next 6 months I had to put up with derogatory remarks.

Dr Bullach never did call Dr Dobritt, nor did he send any of my updated records. I found that out when I went to see him myself again. I had been a model patient; and the way I was treated when I went back to see him was horrible. He would not take me back as his patient! He told me that’ “he couldn’t see me because I was part of “Dr Bullach’s mess”! I had no idea what he was talking about!

I sought out a pain physician and found one near my home. He told me that if I could take myself off of the medication that had been prescribed to me since 2005, that he would “accept me as his patient”.  I was very ill for about 11 days and for up to 6 months, I was not feeling well aside from the pain issues. But I got through it and would not ever want my worst enemy to go through that experience. I did it with my loving husband by my side because I was not addicted to it. My mind did not care at all, but my body was dependent. When that ordeal was over, I saw my current pain dr; the one I still see today. Things had been going well and I have had some semblance of a life. He had told me that I was a “complicated patient” and that I did not have to worry about my medication being stopped.

For several days prior to these appointments, I became very apprehensive, nervous and had many of the PTSD symptoms recurring monthly. Then his attitude towards me changed from a mutual respect to him being the “Wizard with a magic wand” and Me being a peasant “needing his magic”. Thats the only metaphor I can come up with. It was bazaar. I had a routine urine drug screen test in April 2018 and he knew before I left his office that something was not “right” with it, but he failed to inform me prior to leaving. At my next appointment he informed me that I had had a positive urine test and so he sent it into a lab for more testing. It came back as a “false positive” because of the migraine medication that HE KNEW WAS PRESCRIBED to me for many years. I take very little, but he knew it was in my records; he knows that I take it.  In the end, we got stuck with a $265.00 bill for testing that I did not agree to pay for. We got stuck with this large bill for something that I did not do and would never have done. It was his mistake, not mine that he forgot the medications that I am taking and that it can show up as something else, as he explained later.

He has had an “edge” to his treatment of me since that date. I am literally ill prior to each monthly appointment. Nothing changes in 30 days anyways? Why in the world do we need to go so often? This is ridiculous.  Just as a person with diplopia or myopia needs glasses; just as a diabetic needs insulin and a depressed person needs anti-depressants; I am a chronic intractable pain patient and I need pain medications.  I’ve never done anything wrong as far as I always pick up my meds on time, I’m never late for my appointments and I’ve never been a “no-show”. But I showed up on July 9th, 2018; and was suddenly without explanation, cut down to 75% of my LA/ER pain medication. He was going to stop it abruptly that day, but I did not get hysterical. I reasoned with him, adult to adult. I reminded him of my prior heart attack, the CVA (stroke) and my complicated medical history with multiple co-morbidities. He agreed reluctantly to taper me a bit. He informed me that he was doing this to get me “psychologically ready” and that next month I would get zero.  I’m not “Psychologically addicted” so that made no sense at all, but I went with it for my own comfort and safety.  He went on to tell me that suddenly the patch is  now “only for cancer patients”, which he does not treat. He also told me that I was “not heavy enough” for the patch and “I was probably only really getting 30% of the medication”. I did not say a word as I was prescribed down from 100 mcg per hour, every 48 hours (due to hyper metabolizing), to 75 mcg every 72 hours. So not only 25% less medication, but now being stretched out a full 24 hours longer each patch. The first few days were difficult as I had a few withdrawal symptoms. But the rest of the month, I’ve had increased pain, exacerbation of my CRPS, and fatigue. Also, every 3rd day I was in bed, very ill. We all know that for especially those of us who hyper-metabolize (due to the types of pain illnesses that we have), the patch never works on the 3rd day!

I have a loving, supportive husband and my support “team” online which consists of a few people who have been there for me throughout this ordeal. I had websites, stories and ideas sent, all in an effort to help me reason with my pain dr. On 8-10-18, I showed up well prepared.  I had with me, the 2013 FDA’s response to Andrew Kolodny, when he wanted Fentanyl labelling changed for non-cancer pain. They told him this, in their 2013 letter (Docket No. FDA-2012-P-0818):  “It is FDA’s view that a patient without cancer, like a patient with cancer, may suffer from chronic pain, and PROP has not provided scientific support for why labeling should recommend different treatment for such patients.  In addition, FDA knows of no physiological or pharmacological basis upon which to differentiate the treatment of chronic pain in a cancer setting or patient from the treatment of chronic pain in the absence of cancer, and comments to the Petition docket reflect similar concerns.  FDA therefore declines to make a distinction between cancer and non-cancer chronic pain in opioid labeling”. My dr responded that “this was not about Fentanyl” and that I am educated and should be able to find out about this?

Next, I brought to his attention, a letter that I received a copy of, from a good friend of mine on LinkedIn. He had written to the CDC and asked about the horrific state of affairs within the chronic pain community. We covered his name and I showed this to my dr as well. This letter, which is directly from the CDC and dated 4-8-18, states these things:

  • chronic pain patients deserve safe and effective pain management
  • physicians should continue to use their clinical judgment and base their treatment on what they know about their patients. That includes the use of opioids if they are determined to be the best course of treatment. The Guideline does not support involuntary tapering.
  • Obtaining patient buy-in before tapering is critical to successful dose reduction.
  • The Guideline is not a rule, regulation , or law.
  • The Guideline is not intended to deny access to opioid pain medication as an option for. pain management.
  • The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain.
  • The Guidelines are not intended to take away physician discretion and decision-making.
  • Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy.

In the end, none of the information that I presented, made any difference to my pain dr.. He just kept repeating “the guidelines, the guidelines, the guidelines”. He told me that in all reality, I was not worth saving, because if I look at his waiting room, he has all of those other people to serve, who also live with pain. If he helps me, he risks losing his practice and then he would not be able to help all of them. He informed me that “everyone is looking at him the same way” and they are also “pleading with him” for their medications.  I told him that he’s told me that I am “different” and that I am a “very complicated case with multiple co-morbidities”.  I told him that I researched Michigan Law and that there are no changes in the care or plans for chronic pain, only acute pain. None of this mattered because he just looked at me, after I showed him the letter from my G.I. dr.. A letter written by him on my behalf, states that “Suzanne has been stable while she received the fentanyl patch”. It goes on to say that I have “RSD and severe Gastroparesis and this could “exacerbate the illness of a patient who was difficult to stabilize” due to Q-T prolongation, her allergies and intolerance for oral medications”. He said that “he strongly recommends that my pain management not be altered unless there is a strong medical reason.”

My pain dr looked at me and said “This is bullshit! His license is not any better than mine! If he wants you to have the fentanyl patch then let him prescribe it for you. You’re also welcome to find another dr and get a 2nd opinion. I won’t be upset if you do that, although Im not kicking you out or anything.” He repeated that “the CDC guidelines are specific for fentanyl” and there was no way in hell I was ever getting that from him ever again, an neither is anyone else; no matter what! He pretty much told me if there was an exception, I would be it, but there are no exceptions. He repeated to me that I am educated, and have access to the internet. If I do my research, I will know that what he’s saying is true. I have done a ton of research and I know that what he’s saying is not true. He is violating his Hippocratic oath “to do no harm”. Many other physicians are also doing this instead of defending the fragile people who need them during this opioid hysteria

WEGO Health 2018 Awards


I am very excited to inform you that I have been nominated for two WEGO Health Awards in the 2018 WEGO Health Awards season. The two areas in which I’ve been nominated are: “Best In Show Blog” (for this Blog “Tears of Truth”) and also for “Best In Show Facebook” for my many facebook groups:

  • (International CRPS Support group, RASE for CRPS (research,awareness,support and education)
  • Dysautonomia Support Network
  • Michigan/Midwest & friends
  • Chronic Pain Support Group
  • Deaf/Hard of Hearing and Living with Chronic Pain
  • People In Pain Unite
  • ASL Song and ASLSuzyQ (these last two are ASL, or American Sign Language groups).

Also for my Facebook Pages:

  • RASE for CRPS,
  • RASE for Invisible Diseases,
  • Dysautonomia Network,
  • Association for Ethical treatment of Pain Patients (AETOPP),
  • People In Pain Unite,
  • Gone But Not Forgotten Friends and Family
  • ASLSuzyQ)

WEGO Healt is a mission-driven company connecting healthcare with the experience, skills and insights of the patient leaders.  They are the worlds largest network of patient leaders, working across  virtualy 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.  With 16 award categories, the WEGO Health awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information and support their communities but often without recognition.

I want to thank those who nominated me and thought enough of my advocacy/awareness work to think of me for these awards. It means so much to be nominated because though I don’t do what I do in order to get anything from it; I appreciate being recognized for the work that I do. It means that the work that I do voluntarily to help the several communities that I am involved with, is not going unnoticed. Thank you so much for that.

I feel that I deserve the “Best in Show Blog” award because my blog, ‘Tears of Truth”, has become a large network and a plethora of information for patients who live with various illnesses that especially cause chronic pain. There are many resources and so much information here to address patients with various needs. I feel that I also deserve the “Best in Show Facebook” because I serve several different patient communities who live with chronic pain from various illnesses. I have created 6 chronic pain support groups and 2 ASL groups that support Deaf/Hard of Hearing community (including myself, as I am HoH). I try very hard to work closely with several different non-profits and I do not ask for anything in return. These awards, even just being nominated gives me that feeling of being appreciated.

This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in Octoer, co-hosted by the Society of Participator Medicine at the Connected Health Conference. It is very important to me and I would really love to attentd this event to collaborate with industry leaders. Also, I would truly love to meet all of the people who I’ve been working with and talking with all of these years, since 2010 or so, when I first became a WEGO Patient Leader.

I’m now looking toward YOU, my incredibly supportive network to help endorse me for these two awards.  There are two easy ways to endorse me, (*Wordpress does not allow me to put a badge on this blog. Therefore the link is on the column to the upper right side of this blog (on a computer)…or you can easily choose the method below)….that will only take seconds of  your time, I promise! (I would love to be endorsed in both categories because they are equally important.

If I have ever supported you, made you laugh, given you inspiration  or cheered you on to keep fighting – please consider taking just a few seconds to endorse me for these awards. Thank you in advance, from my heart.

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