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.”

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

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

We Are Not A “One Size Fits All” Society


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I’ve had a few interviews recently, with people who want to know about “my story” mostly. But I’m finding out more and more that so many in mainstreamed society do not understand chronic illnesses or pain whatsoever.  There are 100 million people living in the USA, who live with daily chronic pain. We truly need to “talk about” this.  I’ve even been speaking with legislators to try and get some of these House Bills to NOT be permanent law. The people who are sitting on these committees do not understand anything about chronic pain, yet these are the persons making the medical decisions for us instead of our physicians. Most or many chronic pain patients visit their pain management physicians, now monthly. The pain doctors are the ones who went to school for many many years to learn about how to treat people who live with real pain on a daily basis. Why are these Bills being turned into laws without the consent of a pain Dr.? Why were there no pain management physicians sitting in on the meetings when the CDC guidelines were being discussed?

The CDC guidelines that were put into place in 2016, were done behind “closed doors” and in “secret”; without any pain management physicians there to guide them at all. No, there was only PROP (physicians for responsible opioid prescribing), including their guy, Andrew Kolodny; who is a Psychiatrist.  He is an addiction specialist, not a Physician trained in the treatment of chronic pain. Why would the CDC set guidelines like these and allow them to be done like this in secret, by a person who is not even trained in the management of pain? Next, these guidelines are supposed to be just that, “guidelines”.  Somehow they have become the “law” without actually going through the right chain of events to become a “law”.  Physicians, pharmacies and others are now adhering to these “guidelines” that were meant for general physicians, not even for Pain physicians.  But some pain management Dr.’s have seen their colleagues have their livliehoods taken away by the DEA now, and they are fearful.  They fear losing their practice and everything that they went to school all of those years  to do.

These CDC guidelines are not the law but Dr.’s are being “bullied” into making them the law in their own practices.  They have famlies and a life outside of pain management. They don’t want to lose everything and I undertand that.  But someone has to stand up for what is good, lawful and right!  We need to remind our physicians that these are just guidelines and not anything that legally must be done right now.  The guidelines, after all, were also supposed to be about stopping the overprescribing of opioids right after an injury or a surgery.  They weren’t meant to take the very lives away from the chronic pain patients; yet that is what’s happening.  People are dying and suicides are rising even though in the last several years, the prescribing for opioids has actually gone down.  Did you know that legacy chronic pain patients, those who were already on an opioid pain medication plan that was working for them, before the  2016 guidelines came into effect; are supposed to be exempt from them? But that’s not what is happening in many cities and states.

Today, in 2017, in our United States of America; people are being tortured. Yes, it is true.  Our service men, the Vets who came back from combat, after fighting for their country, return home to live with terrible and painful wounds.  They were the first to be denied pain medications and now everyone else is following. How can a country let those who lost a limb or more, fighting for them; just live with pain and not try to ease that pain?  If you read the CDC guidelines in the link that I’ve provided above (in the second paragraph), you will be able to read that the guidelines spell out these words “reduce opioids UNLESS THERE IS HARM BY DOING SO”.  So many in our country are now being harmed by these guidelines that are being abused and played out as “law”. Do you know that the elderly in nursing homes are now being denied opioids and left to live out their days in agony and chronic pain at various advanced ages? This is called “torture” and “abuse” and it’s just wrong! Just as it is wrong to make everyone be at the same dosage of opioid pain medication.  We are not  “one size fits all” human beings. Just as 90MME or less, will not work the same for everyone. We all metabolizes differently.  Some physicians & legislators are listening again, to the non-pain management Dr.’s, who think that 90 MME is the highest amount that every single person should be allowed to take, no matter the circumstances.  This is truly torture for patients who are in need of more than that amount.  There are patients who must take more than that in order to have some semblance of a life outside of their bed. They are not groggy or high.  They are just trying to get by and live their lives the best way that they possible. To the surprise of the journalists and legislators that I’ve spoken with, the chronic pain community that I know and love, doesn’t want more opioids for pain relief.  They want only what is needed to get by;  to live some kind of life with lessened pain.  I was asked “If I could have more opioid pain medication, would I want more?” I responded vehemently, “Absolutely not!” If I did not need to take the medications that give me some pain relief, then I would not take them.  I don’t want more and more pain medications.  I only want the amount that is necessary for me to have some kind of life outside of my bed.

Of course, I understand that opioids normally are not the very first course of action for a chronic pain patient.  We have to go through the rigorous pain clinic “steps”.  There are the trigger point injections, different kinds of Nerve blocks, biofeedback and occasional trip to see their pain Psychologist. Once found to “not have an addictive personality” they will try different medications.  There are persons who have tried many non-opioid pain medications and either they got deathly ill from them, were allergic or they didn’t work. The next step is usually invasive and expensive surgery to either get an intrathecal pain pump or a spinal cord stimulator. People have varying views regarding these surgeries and the outcomes. I don’t think anyone should be forced to have an invasive surgery.  One in which a catheter or electrodes are stuck into the patients spine.  The patient is then given a remote control device that controls the amount of stimulation they receive for pain relief (if it works). Otherwise the pain patient has pain medication filled into a “hockey puck” -like device (pump) placed inside of the abdomen area.  They visit their pain Dr. monthly to get this pump filled. The intrathecal pain pump, I was told, is equal to about 1/300 of the amount of oral pain medication. It is dripped slowly into the spinal cord to help with pain. Dangerous granulomas can form and there may be other complications. I must also mention that afterwards, you are then “married” to that specific pain Dr. for the rest of eternity (for the most part).  I also must add that most everyone who has these invasive surgeries, still need oral opioid pain medication for “breakthrough pain”.

There are persons who aren’t candidates for one reason or another and they are not able to get a Spinal cord Stimulator or an Intrathecal Pain Pump.  After trying many non-opioid medications and not being a candidate for either of these surgeries; there are not a lot of other options.  But I want the decision to be between my Pain Dr. and me, alone.  I don’t want the government in my patient room, uneducated in pain management but trying to make all of the decisions.  I honestly believe that me and my pain management physician, who went to school for approximately 13 years, or more, to specialize in taking care of people who live with pain; should be the ones to decide whats best for me. In my opinion, no one should ever be forced to have invasive surgeries; if there is a pill available that has little or no side effects, when taken responsibly.  All medications should be taken responsibly because a person can overdose on insulin, heart medication or anti-depressants. It’s not just opioids that are harmful if too much is taken. Lastly, I was asked if I am “pro-opioids”.  My answer is “No, I am pro-patients”.

 

Invisible Disabilities Week 10-15 Through 10-21-2017, You Are “Invisible No More”


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Several years ago I was approached by a YouTube channel called “Invisible No More TV”. They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”.  They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more’.  I agreed and I’ve been featured on that channel ever since 2012.  I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”.  The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”.  I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.

First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabili.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.  Unfortunatley the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgements.”  The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed.  One week during the year, the third week of October is the time to share your journey with invisible disabilities.  This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”.  During this wek, we will be posing many interactive posts on Facebook, Instagram and Twitter.  These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share. This is YOUR week to meet new friends, post a video or share  stories with others.  The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.

This is how this week will play out:  On Monday we want you to “share your story”.  You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best). Please note that you can post your story throughout the week, but Monday is the starting date for this activity.  On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life. You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes. If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at:  www.InvisibleDisabilities.org).  If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities.  IDA is on  Instagram at: http://www.Instagram.com/invisibledisabilities, on Twitter at: http://www.twitter.com/InvDisabilities and on Facebook at:  www.Facebook.com/InvisibleDisabilities. You can use the tag #InvisibleDisabilitiesWeek.

Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”.  They believe that “together we can make a difference in our communities and around the world.”

But now I just want to tell you a little bit about my friend Sherri Connell was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed.  At first friends and family were understanding and supportive.  She has been able to regain some use of her legs with a lot of work and effort. She still finds it difficult to stand and walk around.  But because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding. It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too.  She could not care for her own daily needs.

Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness.  He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”.  Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world.  These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.

So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mision to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the  Globe”!  If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above.  Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.

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No Competition, No Winners!


We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.
Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.