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)

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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.

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

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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