Gaslighting: How A Flicker Of Self-Doubt Warps Our Response To Sexual Harassment and pain 


I was so touched by this email that I received from my friend and colleague, Dr. Mark Ibsen, M.D.. I wanted to re-post this here in my blog, because I thought you would enjoy reading it.

**This is a guest blog post written by Dr Mark Ibsen MD***(He’s referring to this article: https://www.npr.org/2017/11/25/565729334/gaslighting-how-a-flicker-of-self-doubt-warps-our-response-to-sexual-harassment)

********

When I read this,

I could see how pain patients are often gaslighted

Out of their story, their reality

By the domination structure.

Not always male ( think Jayne Ballentyne)

But

Very similar to the harms associated with

Sexual harassment/abuse that is so currently in our national focus.

Whether male or female

Pain makes us doubt our own reality.

This is what makes it such a terrorist.

IMHO

Can we piggy back into the abuse conversation?

Can we make the case that those with arachnoiditis, for example

Were harmed by needle jockeys

Then

Dealt with dismissively ( no one will believe you)

Then

Cowed into submission by being threatened with loss of their medication?

Or

Cancer patients who survive,

Yet can’t get pain relief for their neuropathy,

And get the message:they should  be grateful to be alive…

Or

Wounded warriors who return from Iraq or Afghanistan with

Severe injuries and ptsd

Who must reinvent their entire persona?

Maybe there’s something useful in being with this issue in a new way…

https://www.npr.org/2017/11/25/565729334/gaslighting-how-a-flicker-of-self-doubt-warps-our-response-to-sexual-harassment

Or any kind of harassment.

I’ve been gaslighting myself for years in response to the attack on my practice by

The Montana BOME,

Along with the ptsd from hearings where my

Personality was attacked

My integrity impugned

And

My mental health repeatedly called into question.

Of course the financial disaster of

Loss of my business

Medical costs

Legal wrangling

Has been great,

But the greatest impact has been on my confidence

Faith

Optimism

And

Open hearted empathy.

Yet,

Overcoming these self doubts,

While a daily regimen

Has taught me to be more authentic

Has shown me that being Raw upgrades my intuition and healing skill set,

Making a wider range of emotional states available to me, as well as the opportunity to transform these states.

So- yes Pain IS an F/N terrorist.

And

While I have yet to develop gratitude for

Mike Fanning and the Board

Sarah Damm

Dea agents Addis and Tuss

Pharmacists who refuse to follow the CSA and refuse to fill my Rx

And

Others who ripped me off when I was reeling,

I also

Have learned the validity of Winston Churchill’s statement from WWI:

” nothing so enlivens the soul as to be shot at without result”

It took me 4 days of the Thanksgiving holiday to get to this place. Thanks to friends

Community

Therapy

And

Alanon

And Candy

Be well

Mark Ibsen MD

Helena Mt.

Forest Is One Tree That Will Not Fall Without Being Heard!


Hello Luvs,

I just wanted to get something up today that would let many more people know & learn about Dr. Forest Tennant. I want everyone to know what is happening to this good man; this awesome wonderful doctor and friend of mine. I’m working on my own blog post but I wanted this up so that you could learn quickly and start helping. I want you to learn about Dr. Tennant and what he does for people. He helps the sickest of the sick. He helps people that other doctors don’t want to be bothered with; they just want to throw them away! Dr. Tennant is a good man and he doesn’t deserve what is happening to him. What’s happening now, is like what we think might happen in some Third World country!! Our country is changing for the worse! This isn’t the USA I ever remember and loved! What’s happening is fear mongering, craziness, bullying, and who knows what else?

Dr. Jeffrey Fudin, is a very close friend of Dr. Forest Tennant. I asked him if I could re-post this story from his blog today. He gave me permission to do so. I need to make sure you know that I did not write this piece. It is totally all Dr. Fudin’s writing & work here today except for this introduction. Please visit his blog @Paindr.com :

**(Copied with permission from Dr Jeffry Fudin, B.S., Pharm.D., FCCP, FASHP)

Diplomate, American Academy of Pain Management

#DropTheTennantCase

Forest is one tree that will not fall without being heard:

I was shocked to learn of the Gestapo tactics the DEA organized in the attack against Dr. Forest Tennant.  What kind of world do we live in? I am not at all surprised however to see the outrage amongst my peers to rise up in support of Dr. Tennant’s well-mannered and careful dedication to his patients. When asked an open-ended question by a prominent professional group regarding this mockery, my first response was, “Perhaps the DEA did the world a favor – this time they screwed with the wrong person and their bungling actions will reverberate pervasively.” I suspect almost every leading pain clinician scholar will line up to offer expert witness services in support of Dr. Tennant should the DEA contemptuous actions against Dr. Tennant ever make it to court.

If anybody Tweets, posts, or shares any comment on social media, please include this hashtag, #DropTheTennantCase.

In the last few hours we already see two posts, The DEA Raids the Offices of My Friend and Colleague, Dr. Tennant and DEA Raids Dr. Forest Tennant’s Pain Clinic. Keep them coming and be sure to add #DropTheTennantCase.

Dr. Morty Fein was kind enough to provide some backdrop and clever insight to the alternative news associated with the DEA raid on Dr. Tennant and the patients the patients and community that will be harmed as a result.

Here’s what he had to say in his piece entitled,

The Fifth Vital ….Sigh

When there is regime change there is often a purge of anything and everything associated with the prior (often disgraced) movement and its rulers. History gets rewritten and we move on to a new and improved world. In pain politics, the opiophiles have been replaced by the opiophobes in power and every remnant of prior rule, every concept and tenet ends up getting dragged through the mud and discarded. Sigh.

Witness what has happened to the notion of pseudoaddiction. It has been ridiculed without a critical look at its continued importance. Because an executive from a company accused (often correctly but just as often overzealously) of overzealous marketing of opioids wrote an “n of 1 paper” based on a sincere and accurate appraisal of a troubling observation during his early years of pain practice – many years before he left practice and became an executive – the notion has been tied to overpromotion of opioids in the media and by opiophobes. Never mind the fact that the notion is even more important now since the stingy approach to opioid availability is daily leading to even worse pain control for millions and in turn causing desperation. And desperation can lead to people acting in ways that are uncharacteristic of them and their behavior construed as a sign of addiction. Happens every day. Often. Several authors, including the original authors, have over the years written about the need to re-evaluate the concept; not the validity of the observation but in what clinicians need to do to safely respond to it. The answer is not the knee jerk raising of opioid doses that became a bit of a caricature during the early days of the opiophile revolution, but a reappraisal of the totality of the patient’s pain regimen and approach and a sincere respect for the fact that a person taking liberties with their opioids or augmenting with anything including street drugs can indeed trigger a behavioral loss of control that needs to be addressed and not solely relying on improved analgesia to stop the behavior. Loss of control and uncontrolled pain are not mutually exclusive. Regardless of what drives the drug taking behavior and loss of control, abuse and even overdose can result. Perhaps this is why lowering MSEs nationally is not decreasing the number of opioid overdoses and in fact they are increasing them. The notion is self-effacing for us HCPs – that it is our failure to control pain that can drive the desperation and we have the responsibility to help fix it and the behavioral syndrome accompanying it – if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And of course, the pain as the 5th vital sign movement has also been ridiculed as a simple ploy by pharma to lead to more pain assessment solely because it would lead to the more opioid prescribing not to simply bring pain and suffering out of the shadows and raise awareness. Outrageous and laughable contend the opiophobes. That people suffer in silence, that they are afraid to tell their health care providers, that unless they are asked they will often assume that discussion of their pain is not the purview of the providers with whom they are interacting is a trite every day observation doesn’t prevent throwing the baby out with the bathwater. Pain as a 5th vital sign is a movement about communication not treatment. Let us not go back to the bad old days of don’t ask don’t tell about pain and suffering. Want to change the name of it? Fine. But we shouldn’t stop efforts to ask about our patients’ experiences of suffering. We should avoid knee jerk reactions driving what we are going to do about it. Simply because someone reports their pain as “8 out of 10” doesn’t mean we should knee jerk raise their opioid dose nor should we knee jerk increase the frequency of their meditation sessions. It requires time and thought and a self-effacing attitude that we can do better for the person and a commitment to do better for the person. If anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And while we are on the subject of regime change, some of the most expert, most ethical and most erudite former leaders in the opioid movement are being dragged through the mud and the legal system on virtually a daily basis nationwide, tormented by district attorneys and ambulance chasers who would beg any one of them to care for them or their family members if they were stricken with severe and unrelenting chronic pain. Virtually everything they ever wrote, said or did being misportayed and  misrepresented as they get held responsible for consequences of treatments that occurred in jurisdictions they never set foot in. As if writing or talking or doing everything they could for opioid safety was just a ploy for pharma to push more drugs. No, it was a move to try to help others if they were going to do opioid therapy to adopt a seriousness and responsibility and acquire expertise like their own. They may have overestimated the integrity of their peers that went on to run pill mills but they never advocated for pill mills. They may have underestimated the size of the gap between their own expertise and that of their brethren that would try to emulate them. But they never advocated for carelessness or lack of responsibility. They wanted us all to take a self-effacing (i.e. that we all need to learn more about pain) and responsible and thoughtful approach. As if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

This brings me to the raiding of the home and practice of the beloved and venerated Dr. Forest Tennant. His Thanksgiving gift was a storm trooper’s boot in his door – by a cop who has a better sense of what the doctor’s patients need than the doctor (with 50 years plus of experience) does. And who I am certain would beg Dr. Tennant to care for him and his family if they were stricken with unrelenting chronic pain.  Dr. Tennant called them and their scare tactics out in an interview right after the events and he intends to fight. Be Brave! Don’t run Forest, don’t run!

Free the Opioid 5 I say.

It is time to stand and fight. Regime change and the re-writing of history must stop now. Our support for these 5 is vital. Sigh.

This is taken with permission, from the Blog of Dr. Jeffry Fudin @paindr.com and here’s the link: http://paindr.com/forest-is-one-tree-that-will-not-fall-without-being-heard/

Here’s some information about Dr Fudin. This information was taken directly from his own website/Blog , also at paindr.com…. I didn’t want to get anything wrong and so this too, is directly copied from his Blog. All rights are reserved by him and everything here today is all his work and his writing and not mine! Please read about Dr Fudin:

Jeffrey Fudin, B.S., Pharm.D., FCCP, FASHP

Diplomate, American Academy of Pain Management

Founder & Chair, PROMPT (Professionals for Rational Opioid Monitoring & Pharmacotherapy)

Owner & Managing Editor, PainDr.com

Director, Scientific and Clinical Affairs, REMITIGATE, LLC in Delmar NY

Director PGY2 Pain Residency Stratton VA Medical Center in Albany NY

Adjunct Associate Professor, Western New England University College of Pharmacy

Adjunct Assistant Professor of Pharmacy Practice, University of Connecticut School of Pharmacy

Section Editor, Pain Medicine

Dr. Fudin graduated from Albany College of Pharmacy & Health Sciences with his Bachelors Degree and Pharm.D. He completed an Oncology/Hematology fellowship at SUNY/Upstate Medical Center.  He is a Diplomate to the American Academy of Pain Management and a Fellow of both the American College of Clinical Pharmacy and the American Society of Health-system Pharmacists.

Dr. Fudin is a Section Editor for Pain Medicine, Founder/Chairman of Professionals for Rational Opioid Monitoring & Pharmacotherapy, and peer reviewer for several professional journals.   He has participated in developing practice guidelines for use of opioids in chronic noncancer pain (APS, AAPM collaborative) and participated in national and international guideline development for arthritis, fibromyalgia, and palliative Care. He has also participated in the development and co-author guidelines for the treatment of opioid-induced constipation. He is consultant to a national panel to develop consensus guidelines for the proper use of urine testing in addiction medicine, a collaborative effort with the National Association of Addiction Treatment Providers (NAATP), Center for Lawful Access and Abuse Deterrence (CLAAD), and the American Society of Addiction Medicine (ASAM). And he is a panel member for new urine test guidelines under development by the American Academy of Pain Medicine.

Dr. Fudin is President and Director for Scientific and Clinical Affairs for REMITIGATE, LLC, a software development company specializing in opioid safety. He practices as a Clinical Pharmacy Specialist and Director, PGY-2 Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany NY.  He holds adjunct faculty positions at University of Connecticut School of Pharmacy, Western New England University College of Pharmacy in Springfield MA, and Albany College of Pharmacy & Health Sciences.  Dr. Fudin has been an invited speaker on pain management nationally and internationally.

Dr. Fudin is founder and Chair of Professionals for Rational Opioid Monitoring and Pharmacotherapy (PROMPT), owner and managing editor for paindr.com and founder of Remitigate LLC, a software development company that has launched an application to help clinicians interpret urine drugs screens with several pipeline products including a pharmacogenetic applications and other opioid safety software initiatives.  He is a prolific lecturer, writer, and researcher on pain management topics and he served as a Task Force member for the Board of Pharmacy Specialties (BPS) for role delineation study/practice analysis of pain and palliative care pharmacy. He was awarded the American Academy of Pain Medicine’s Presidential Commendation in 2014, in recognition as “a voice for scientific integrity and an advocate for people in pain.”

Run Forest, Run!


This was written by Dr Mark Ibsen, MD, who has become a close friend of mine; as has Dr Tennant. My thoughts and blog post on this subject will be forthcoming ASAP! But for now, just for this moment, here are Dr Ibsen, MD’s words regarding this abhorrent situation with Dr Forrest Tennant:

Dr Tennant recently came to Montana to testify for Dr Christensen. Sadly, while in the home state of many of his intractable pain refugee patients,

His home was invaded and business ransacked by agents who allege he was “overprescribing”. 

Just what IS overprescribing?

And what would Underprescribing look like?

This term would imply that there is a ceiling dose of a medication that has been prescribed. 

It would also imply that there is a “Goldilocks Dose” that is not too high

Not too low, but “just right”. 

Dr Tennant,

An endocrinologist,

Has been on the forefront of research and therapy for the intractable pain that patients developed after years of medical or interventional management, or mismanagement. 

These are patients with adhesive arachnoiditis, complex regional pain syndrome, trigeminal neuralgia, failed back syndrome, traumatic brain injury, and various other accidental and iatrogenic pain syndromes. 

The law enforcement and regulatory agencies Who are threatened by the Obi-Wan Kenobi of pain medicine do not have the sophistication,

compassion,

Or training to realize that they are not dealing with El Chapo. Drug dealers don’t actually care how their clients are doing. In fact, when a drug addict dies of an overdose, sales most often go up. Dealing drugs that are unregulated and often fatal is not what doctors do. 

Most people who suffer cardiac arrest have some type of medication on board. We don’t arrest their doctor for prescribing a Statin or aspirin or blood pressure medication in an attempt to enhance or prolong a persons life. 

People have hypoglycemic reactions every day,treated for their diabetes. We do not arrest their doctor for “overprescribing insulin”.

All doctors are required by their oath to do no harm-to try to hit that “Goldilocks dose”

When cancer patients die,

Do we blame there oncologist for killing them?

There’s a reason medical doctors train for 12 to 20 years, then continue to study and research the literature their entire careers. Could it really be true that Dr. Tennant is sidelined by a DEA agent with 12 weeks of training?

Are doctors no longer protected by the regulations outlined in the Controlled Substances Act?

Dr. Tennant treats the sickest of intractable pain patients. I too have referred intractable pain patients to him, I have taken his courses and follow his protocols.

Now, who will testify for me and protect my patients?

According to the World Health Organization North America provides the best pain care management on the planet. Dr. Tennant has always recommended following the world health organization pain ladder. 

Doctors like forest Tennant, William Hurwitz MD, Ronald Myers, and Chris Christiansen are simply guilty of trying to relieve the suffering of their intractable pain patients. 

This often requires us to

“Increase the dose”

If we as a culture continue to punish pain patients and the doctors that serve them no one will be safe accessing the incredible medical system we have developed in the US. 

Yes, complications occur. 

Yes, people are dying. 

From heroin/ fentanyl injection ODs,

Not

From responsible informed and well researched treatment of those in intractable pain who have failed every other therapy available.

“Run, Forest, run!”

Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

Please Help, Your Comments Are Needed


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Andrew Kolodny, the Executive Director of PROP (physicians for responsible opioid prescribing) has filed a peitition on behalf of PROP, to the FDA.  He/they want to limit the amount of milligrams in certain herigher milligram opioid tablets.  Kolody/PROP continue to make very wrong, bad and unproven claims, in my opinion and in the opinion of many other health advocates, pain physicians, general physicians, pharmacisits and chronic pain patients. They are trying to get these higher doses banned altogether, which could make the chronic pain patients lives even more difficult and their ability to get prescriptions filled an even more arduous task.

The American Academy of Pain Medicine has written their comments regarding and opposing the afore mentioned petition by Kolodny and PROP. If you aren’t convinced that what’s happening to chronic pain patients is totally wrong and cruel, then please read the full comments written by this AAPM and the comments of all the other patients, physicians and more; already posted for the public to see. Here are a few of the points that the AAPM makes:

  1.  They state that there are false and misleading statements in this petition. That the writers of it have stated that the “CDC’s consensus was that increasing dosages to 50 or more MM#/day increases overdose risk without necessarily adding benefits for pain conrol or function”…..THE CDC made no such conclusion whatsoever. They just said that there wasn’t enough evidence base for the benefits of long term use.  The CDC guidelines were supposed to be for chronic opioid use in primary care settings and do not discuss at all, the use of opioid therapy in the pain management physicians setting.
  2. The AAPM shows us how Kolodny and his minions lied, just outright lied when they said the AAPM had explicitly endorsed the “notion that opioids should be prescribed without an upper limit”.  They never said that, it is a false statement.
  3.   They say Kolodny and co. seek the removal of “ultra-high doasage unit” opioid formulations.  But there is no definition of this at all and it is, according to the AAPM, just a “creation by the authors”. They also say how Kolodny & PROP limits their request and exludes the transdermal medicaions, and this demonstrates the “idosyncratic nature of their concept”.
  4. They prove how Kolodny and PROP literally lie about how children die from these higher doses but actually AAPM says children can die of respiratory distress even at the lower dosages.  They say that these guys are assuming that children are less likely to ingest several lower dose pills instead of a single higher dose pill and that is just a guess.
  5. The American Academy of Pain Management understands that there should be provider and patient education regarding opioid therapy.  There should also be interdisciplinary care for chronic pain patients.  But they also agree that there are times when Opioid therapy is indicated and there can and should be safety measures in place for inadvertent exposures. Things such as Naloxone can be used but not just arbitrary dose manipulations.

There’s more, but I think you get the idea.  The AAPM even states in their comments, that Kolodny & crew have set some dangerous ideas with their “cavalier assumption” that when higher dosages of opioids are required in some patients, that Kolodny thinks that reducing or taking the opioids away from these patients would be “unlikely to result in a significant inconvenience or hardship.” The AAPM says “this could not be farther from the truth”.  In Summary, the American Academy of Pain Management states that Kolodny’s and PROP’s petition, “if implemented, would cause great harm to our nation’s health.”

Please read the petition at the following link:  https://www.regulations.gov/document?D=FDA-2017-P-5396-0001

Please, I am asking everyone who sees this blog post, to pass it on to another person. Then to each person, I therefore ask you to please write your comments in right now. All comments must be in place before February 2018; when comments will close.  But I warn you that if you don’t do it now, today; you may forget and miss a chance to get your comments written and read.

Below are my comments posted October 18, 2017:

Suzanne Stewart wrote:

It is wrong to do this as we are not a “one size fits all” society. Everyone is different and has different needs  I have many allergic reactions to other medications. I have long QT syndrome and so I am unable to take many many medications. Legacy patients should especially be exempt from this craziness.  Also exempt should be anyone for whom a licensed pain Management physician  feels should be exempt! Pain Dr’s went to school  for many years, a very long time, and they specifically learned about pain and how to treat it.  This man, Andrew Kolodny is not a pain Dr. and he did not go to school to learn anything about pain or how to treat it.  He should in no way be directing what is to be done with the chronic pain community.  The pain community is falling through the cracks in this “opioid crisis”.  This crisis is that pain patients are dying daily and committing suicide because of our lack of access to opioid pain medications.  The Cochrane report of 2010, states that “only 1% or one half of 1% of chronic pain patients ever become addicted!”  This man, A. Kolodny is also trying to state that cancer pain is different than non cancer pain. That cancer deserves pain alleviation but chronic pain does not.   But the FDA said that “theres no scientific evidence to this” and they disagreed with him!  So please realize that he is not doing this for any good or helpful reasons. He is not a “good Samaritan” looking out for all of mankind. He has his own best interests at heart and his own treatment centers to make money for him through this crisis for chronic pain patients.  Sometimes the oral transmucosal opiates or the higher dosage of opioids might be somethng that a legitimate schooled pain physician feels is the best for his/her patient(s).  I don’t think there are any pain management Doctors that would give those out lightly.  There would be a reason and they know the reasons why they would be using these medications or analgesics.  If a legal legitimate pain management Dr. feels this medication is appropriate, then allow him or her to be the Doctor! The Government of the United States of America needs to stay out of the Doctors office and out of the patients rooms and records!

The link to go to for making a comment is below. Please, I am begging each and every one of you to go to this link and make a comment against this petition by Andrew Kolodny and the PROP physicians.  All comments are Due by February 18, 2018.

LINK:

https://www.regulations.gov/document?D=FDA-2017-P-5396-0001

Thank you so much!

Suzanne Stewart,

Patient Health advocate, RSD/RPS patient mentor, US Pain Ambassador, WEGO patient Leader and member of ATIP (Alliance for Treatment of Intractable Pain)

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Introduction To: Inside Incurable Lives


We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis.  Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony.  This is the true “Opioid Crisis”.  But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan.  She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media.  She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”,  came out in September 2017.  In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?”  The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode  2  finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.

Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.”  She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.

The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities.  She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey.   She also wants to do whatever she can so people learn about her feature documentary. 

Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis.  I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.”  She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel.  Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?”  My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families.  Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to.  But we are trying to fight because our very lives depend on it.

Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain.  Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.

Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”.  I think that it taught her and hopefully will teach others about “Invisible Illnesses”.  She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”.  She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community.  If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue.  I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide.  It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.

Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

Help Spread Awareness of RSD/CRPS This November 2017


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    Imagine that one moment you are walking around, sipping lemonade at a Summer arts festival and the next you are admitted into a hospital after a man ran through a red light.  You awaken after a catastrophic motor vehicle accident feeling incoherent and in a lot of pain.  That was what happened to me in 2002.  I endured 3 years of brain injury rehabilitation, 8 years of Physical therapy, speech therapy and 8 surgeries. But this story is not about those days, it is about later getting diagnosed with RSD/CRPS.

     I went in for surgery on my right foot, in April of  2007.  Six weeks later I had my post-op check up. I knew something was wrong, before I arrived at my appointment.  I was in more pain and it felt as though my foot was “on fire” and had “exploded” on the inside.  I was told by the surgeon that day, that I “had a little RSD” and I was given Lyrica.  I could not take the Lyrica, as it made me very ill.  After researching “RSD” online, what I read sounded horrific!  I decided to get a second opinion. After visiting an Orthopedic foot/ankle specialist, I was told that I had “Classic RSD” and he sent me to a Pain Management clinic.  I did not go because I’d recently been through all of the “hoops” of the pain clinic, following the car accident.  I wasn’t a candidate for a pain pump or a spinal cord stimulator and so I was sent back to my primary care physician.  The pain Dr. had told me that “they are looked at under a microscope by the government”, therefore I had to have my primary Dr. do the prescribing.  I ended up getting medications to try and help with the pain.  I tried to finish up the PT but any touching of that foot was unbearable.

     I was getting by, just trying to live day to day. Then in 2013, what was supposed to be a pacemaker replacement surgery turned into a total pectoral muscle rebuild and more. I was diagnosed with “severe systemic/full-body CRPS. I am very lucky to have a Neuro-Cardiologist who’s done research on RSD/CRPS. He tried to head off the full blown systemic CRPS by taking several precautions. Unfortunately, it did not work for me.  Now I’ve explained how I got the CRPS but I’ve not told you about the depth of pain people endure when living with this Neuro- Inflammatory Autoimmune illness that is #43 on the McGill Pain scale.  The copyrighted flame CRPS awareness ribbon is a perfect example of what it feels like. Personally, it is as though the entire left side of my body, inside and out; is on fire.  It feels like a deep burning fire within and yet I feel and icy coldness as well. My knees, feet, hands and chest feel as though they might explode at any given time. This is only one of 8 or 9 high pain chronic illnesses that I live with. I think it is the illness with the worst kind of pain.

     November is the month dedicated to Awareness of RSD/CRPS, also known as “Reflex Sympathetic Dystrophy” and “Complex Regional Pain Syndrome”. Health advocates and patients join with non profits, such as RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and we spread awareness. This is a complex and somewhat rare high pain illness. It is classified as a rare disorder by NORD (National Organization of Rare Disorders) and the FDA, but about 200,000 people are diagnosed annually.  According to the RSDSA website, “CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.”  Usually it follows a surgery, a period of immobilization after a musculoskeletal trauma or some kind of injury to the nerves.  It steals the very life out of so many people who are unfortunate enough to be diagnosed with it. Early diagnosis is the key to some instances of remission. Sometimes it takes years to even get a true diagnosis, due to the fact that many physicians don’t even know anything about it.  But there are some people who can help.  RSDSA  is a 501(c)3 non profit organization based in Connecticut and was founded in 1984.  I’ve come to know and love, the Vice President/director, Jim Broatch, MSW.  Annually, during the month of November, we have quite a campaign going. RSDSA is always there to “provide support, education and hope to all affected by the pain and disability of RSD/CRPS”. They are always striving to do more research and develop better treatments.

     Some of the events that I have going for this month, include a campaign that I call “#wearthemsharethem for RSD/CRPS”. You see, when the former RSDHope.org closed their doors in June 2016; there were many treasures “gifted” to me by my “adopted” family, the Orsini’s. I was given a number of temporary tattoos with the copyrighted CRPS flame awareness ribbon on them. I have put those to good use 2 years in a row, now. I ask people to just send in a SASE (self-addressed stamped envelope). I return their envelope with several of the temporary tattoos inside.  I only ask for them to send me a photo of themselves or someone they love, wearing one of the tattoo’s, so I can post it to my Website  “RASEforCRPS” (R.A.S.E. represents: Research, Awareness, Support & Educate). I use the hashtag #wearthemsharethem and we post to Instagram, Facebook and Twitter, in order to raise awareness. Also I have gotten a proclamation from the Governor of Michigan, Rick Snyder every year since 2013. The proclamation declares that in the state of Michigan, we recognize November as the month dedicated to the Awareness and support of RSD/CRPS. Then there are 3 fundraisers that I have going on this month:  a Facebook fundraiser lasting all month, a LuLaRoe Album sale on Thursday, November 16th through Friday, November 17th for 24 hours, and a Pizzeria fundraiser and Awareness event on Thursday, November 30th from 5:00pm until 8:30pm. One more activity for Awareness and education that I did last year and am doing again this year is the “#30factsfor30days of November”.  I post a daily fact about RSD/CRPS on each social media site.  All facts are taken from the RSDSA website, with their permission of course. 

     Aside from what I am doing, which also includes writing, posting, blogging and sharing; RSDSA has many events taking place during the month of November also.  They have an “event Calendar” on the website, but just to name a few:  there is the 4th annual Central New Jersey RSD/CRPS Walk for Hope, Saturday, November 4, 2017, the 5th annual Fight the Flame 5K, in Charlotte, NC, on Sunday, November 5th, 2017, the Fight the Flame 5k, Mentor, Ohio, Sunday, November 5, 2017, CRPS Meet-up and Scavenger hunt by CRPS Forum, Los Angeles, CA Monday, November 6, 2017, Charity Ride for CRPS, New York City, Saturday, November 11, 2017, and Color the World Orange, World Wide, Monday, November 6, 2017.

   Please help us share this information and raise awareness and support for this painful illness. The RSD/CRPS community truly comes together at all times, but mostly during this special month.  We are not ones to sit in the side lines. This community comes together and creates a beautiful month of togetherness, awareness, support and raising money for the much needed research.  The monies raised, also helps RSDSA provide patient assistance.  One of the funds that helps RSDSA assist CRPS patients is the “Maria Lane Fund” and another is the Brad Jenkins memorial Fund.  You can find out about these assistance programs at the RSDSA website as well. There is also an RSDSA informational YouTube channel at https://www.youtube.com/user/RSDSAofAmerica. The other part of RSDSA’s mission, is to fund research. They have funded more than $3 million dollars in pilot studies and pain fellowships.

     Lastly, I want to personally thank Jim Broatch and RSDSA for the letter that they sent out on October 9, 2017.  I was touched and I stand along side of many other RSD/CRPS patients/advocates. This letter that was emailed to it’s members, states that they “Oppose Cigna’s decision to Not Cover the cost of OxyContin in 2018” and they wrote also “We will continue to stand with our community during the War on “People in Pain”. Thank you to all who are doing their part to spread awareness and try to educate the medical professionals and the public regarding this illness.

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