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
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
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 possibly 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.
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 [firstname.lastname@example.org]
Nancy Winship, Chief Philanthropic Adviser to the President, Brandeis University
Constance Horgan, Founding Director, Brandeis University Institute for Behavioral Health, [email@example.com]
David Weil, Dean, The Heller School of Social Policy and Manageme [firstname.lastname@example.org]
Mark Allen Surchin, President, Brandeis Alumni Association email@example.com
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?”
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
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.
Peace & Hope,
Suzanne B. Stewart
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.
*********PLEASE NOTE THAT THIS IS MY ORIGINAL ARTICLE!!! WHAT GOT POSTED IN “NTL PAIN REPORT” TODAY (9-22-18), WAS EDITED AND CHANGED INTO SOMETHING ELSE. I’M NOT A WHINER NOR AM I WEAK! I HAVE A VOICE & I’M VERY STRONG!! I SENT IN SOMETHING WRITTEN FROM MY HEART & SOUL. IT’S BEEN CHANGED INTO SOMETHING UNRECOGNIZABLE! THOSE ARE NOT MY WORDS OR THOUGHTS AT ALL. THIS IS MY ORIGINAL ARTICLE AND BELOW, YOU CAN READ MY OWN THOUGHTS AND WORDS:
In this time of uncertainty for chronic and/or intractable pain patients please stop telling us to “make peace with our pain”. Until you have walked in my shoes, do not try to dictate what is best for my situation. If you hurt your back momentarily or you have several aches and pains, then by all means, use “mindfulness”, “accept your pain” and then “make peace with it”. I don’t care what you do with it honestly, but stop telling me/us to “make peace” with now, uncontrolled chronic daily pain at a 7/8, knowing that it’s forever. My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now.
Unless you actually live with daily intractable pain, don’t to tell me/us how to manage it. If you’re a writer, motivational speaker or a politician, stop giving advice when you don’t truly understand the nature of living with 8 chronic pain illnesses. If you have one chronic illness and “accepting the pain” or “making peace” with it works for you, then by all means, go for it!
Let me explain for those who don’t really know the person they are preaching to on social media. It’s not always Psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes things just happen that cause a very strong person to live with very high pain. When that pain gets more complicated and worsens as time goes by, and it is forever; that is when acceptance, making peace with your pain, grounding and mindfulness don’t work very well.
I was a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language. One day a man ran a red light and changed all of that for me. Afterwards, I worked very hard at 3 years in TBI rehab, 9 years of PT/OT, driver rehabilitation and speech therapy. I ended up with 2 hearing aids and prisms in my glasses for a long time. For 3 years I refused opioid medication due to the stigma or “taboo” of taking it. I did Biofeedback and the red line was “off the charts” showing that my pain was very high and I needed some other intervention. I was the woman who graduated with honors, never drank or smoked. I was not taking that medication. I worked with a pain Psychologist at a pain clinic. I had several epidural nerve blocks, trigger point injections, cortisone injections and other medications(*most either made me violently ill or I was allergic). I endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I finally accepted the fact that just as people with hearing loss need hearing aids and those with vision issues wear glasses and Diabetics take insulin; I needed to take pain medication to give me back my life, or some semblance of a life.
For 13 years, I’ve been as active as I can be. I don’t lay in my bed and wallow or feel sorry for myself. I have been a US Pain Ambassador, on the Board of Directors and even won “U.S. Pain Ambassador of the year 2016”. I’m a patient Leader for WEGO Health, have been on 3 different radio shows and I have been a mentor for newly Diagnosed CRPS patients. I have a popular blog and write for National Pain Report. I’ve done many fundraisers, awareness events and still currently lead several online groups while helping several non-profit groups with whatever they need help doing. I live with several high pain chronic illnesses, including: systemic/full body CRPS, EDS type 4/vascular, Chiari (with migraines), Right Long Thoracic Nerve Neuropathy, Autonomic Neuropathy, R.A., Dysautonomia/POTs, Coronary Spasms (Prinzmetal Angina), Degenerative Disc Disease with multiple herniate and bulging discs, Spinal Stenosis, Chronic erosive Gastritis, Gastroparesis, SIBO and multiple heart issues.
I’m at 25% of of what I was taking for the past 13 years. Two of my specialists wrote letters on my behalf, to my pain Dr.; explaining that with the multiple illnesses that I live with, the patch is and has been proven to be the very best thing that works for my pain. One of my specialist physicians wrote “why break what doesn’t need fixed? She’s been active and doing so well and this could land her inpatient and in declining health”. My pain Dr. said “this is Bullshit, his license is not any better than mine. If he wants you to have the patch then let him prescribe it”.
I continue to be quickly tapered against my will. I’m in my “Lazy Boy” recliner 16-18 hours every day.
This is what my “forever” is looking like now. I went from teaching aerobics, American Sign Language, being the Elementary schools’, Jump Rope Team coach and an active mother and then grandmother, to “living” in a recliner daily. I’m not focusing on the pain, in fact I’ve done everything to not focus on it. I went through 43 hours of labor and then a C-section, twice; while being sent home with Motrin 800 per my own choice. I’m not a “baby”, nor am I an “addict”. In fact I have a letter from the Pain Psychologist, stating that I “do not have an addictive personality”. So stop telling me to plant my feet (with open sores on them, by the way) into the earth to practice “grounding”. Don’t tell me to “make peace with my pain” or accept it; unless or until you have walked one full day in my shoes! If you haven’t experienced pain on these levels, then stop preaching to the choir. I, for one am getting very tired of defending myself and the rest of the pain community on the subject of opioid pain medication therapy. It does work for some of us just as Insulin helps the Diabetic to continue living.
**The Article Ed edited & changed totally & which appeared to be written by an illiterate 5th grader. Is in its entirety at the Ntl pain Report but for your convenience I’ve recopied what Ed Coghlan wrote in place of what I had sent to him:
Making Peace With Pain (by: Ed Coghlan)
Please stop telling me to make peace with my pain.
I can’t right now and haven’t been able to do for many years.
And it’s getting worse.
My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now. If you have daily intractable pain, you know what I’m talking about.
It is not always psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes you just hurt—a lot.
I was once a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language.
Then a man ran a red light and changed my life. I have endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I said ok
For 13 years, I’ve been as active as I can be. I have been active with a national pain advocacy group and I contribute to the National Pain Report and have worked to advance the wants and desires of the millions of people like me—people who suffer from this cruel condition.
This “reduction” in opioid prescribing has hit me hard. I’m taking about 25% of what I was taking for the past thirteen years. Specialists who treat me have written letters to my pain doctor explaining that with the multiple illnesses I live with, the patch is the best thing for me. My pain doctor, feeling the pressure of the CDC guideline, refused to do it.
Now I’m in a “Lazy Boy” recliner 16 hours a day because I’m being tapered against my will.
Not what I want. Not what I’ve been.
I could tell you much more, but if you’re like me, you know.
It’s not fair.
Suzanne Stewart is a chronic pain patient (and advocate) who lives in Michigan. She is a contributor to the National Pain Report.
This Bio which is usually on all of my NPR articles, is missing today….. here’s what it normally says:
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com
This was my photo + Bio on them”staff columnists” Page under the “Our Team” Tab.
This is the email I rec’d from Ed Coghlan, after I was trying to let him know how upset I was that he “gutted” my (this) article. He added words that I hadn’t written. He changed the powerful message that was in my original story; to one of weakness and whining! Needless to say, I don’t want to write for someone that would call this an “edit”. Then send me an email at 12:05 AM, saying that he was going to publish this article in the morning (6 hours later); without ever allowing me to see the “edits”! I finally asked if I could please see the final copy and about 1:00-1:30 AM, I received the skeleton of my former original article. I begged him not to post it as it was. He’d gone to bed and scheduled it to post at 6:00 am! I was getting all kinds of comments from persons who recognize my writing when they see it and when they don’t! The rest is history!
PS- Btw, he couldn’t get hold of me on Saturday because I have recently been quickly tapered against my will; from my LA/ER pain medication that I’d been taking since 2005. I was in horrible pain from the added emotional strain from my resignation from US Pain Foundation Board of Directors & from USPF. Then the very next day this happened.
My husband called Ed in my place because I’m conscientious and would never just not respond. He told my husband that “he was not comfortable talking with him”! Well he’s also my caregiver and I wasn’t able to speak at that point. It all came tumbling down!
The New Year always brings hope of a new beginning and fear of the unknown. Especially in this time of unrest and uncertainty; there is a panic in the pain community. I see it around me and I feel it each new day. People are starting to come apart and pull away instead of moving together as a community to fight the thing that we all fear most.
Nobody wants to be left to die. We don’t like feeling ignored and uncared about. Drs are running away and leaving in droves. There’s no one left to listen, care or treat those with horrible & high chronic pain conditions. There are groups sprouting up from other groups. It feels as though there are many who wish to be the one to “save the pain community “. But in reality we each can be our own hero. We need to depend on ourselves to get out of this mess.
Try your best and do whatever you are able to do. I’m sure you talk with your families on the telephone? So call up your Senators office and tell him your story! You’ll probably get a staffer, but that’s OK! Write emails much? Write an email to your state reps, Senators and your Governor. You don’t need to be eloquent. They need to see faces, hear stories and come to know us as a community of real persons. Ask them if they can remember a time when they had the worst pain ever? Tell them that this is how we feel most days! Let them know that our Drs need to do the Doctoring. The government has enough to deal with; and so allow the Drs to make informed decisions. After all, they went to school for 12-15 years, some of them. They do know what they’re doing.
Turn your fear into action and if you’re just too sick; see if someone will advocate on your behalf? If nothing else, we need to realize that we are worthwhile individuals. Each of us has something to offer in this life and we are not expendable. We deserve to have love, respect and caring. We have a right to be taken care of just like anyone else does.
We must remember that there are bad people in every walk if life and in each profession. There are the good and the bad; the ying and yang with a balance someplace in the middle. There are good and bad politicians, teachers, and more. Drs, go into this career mostly because they want to heal and help others. There are bad patients too, but most of us just try to do whatever we are told and we follow protocol.
The thing that those in power are forgetting, is the balance. They are going with an all or nothing attitude. Why not realize that there are many precautions in place now with the PDMP and more? The people who want to break the law are going to find a way to do it! Those who are good, law abiding citizens living with daily chronic pain are the ones suffering. I think somehow they know we are physically weak. They think we are unable to fight for what we need and therefore they will make decisions above and for us. But we are not mentally weak. We must join together as one voice and support each other. There is no glory or fame here! There are peoples lives at stake. The right of every human being to live in some semblance of comfort.
A not-so-crazy couple with 15 cats
Lets Talk About Pets.
a voice for many
An effort to raise awareness in India about various chronic pain conditions and chronic illness which are usually invisible through naked eyes.
Me, what I'm going through, family - hope it's interesting to some!
a.k.a. Duane Pool