Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Becoming Incurable Magazine Feature


Hello Luvs

I’m really excited to share this with you today! The US Pain Foundation has teamed with Victoria Suan, the producer, creator & Director of her Documentary “Becoming Incurable “. I’d written to you about 6 weeks ago regarding the feature film etc. But today I want to share this online magazine that she’s made to compliment the video compilations and her Documentary!

I am the middle of 3 persons being featured in this online magazine. I’m being featured for the illness of CRPS. This is thrilling and just so very exciting to be a part of this beautiful project to spread awareness of chronic pain and illness.

Becoming Incurable magazine feature

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.

A Body Of Hope



Hello Luvs,

I was reading my news feed today, feeling very much alone in my pain. I have a wonderful husband who does so much and he’s my soul-mate. I have two lovely daughters and 3 granddaughters, ages 1,3 & almost 5!

We had the 2 older ones sleep over last night. So far we have only had the eldest spend the night. That was easy and awesome. I love them all the same! They are my little blessings. But now I’m in so much pain, that I read the following post with tears in my Eyes. I feel like I’m swimming against the current bcz I try so hard to be upbeat and as “good as I can be”! Today’s been really tough and I’m hard on myself ! This writing is beautiful and the writer is not only a long time friend & Facebook friend; but she’s a talented writer. I have reposted her writing here, to share with you her beautiful words. She has a blog called “A Body Of Hope”. I hope you’ll check it out! Without further hesitation, here’s Mary Mattio’s beautiful words:

*********************************

~If you’re having a bad day…this is for you
You have every right to feel overwhelmed, as though no one understands, maybe you feel afraid, or even hopeless. As far as I know, everyone living with long term illness understands these feelings. I know I do.

Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones needed to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of stress, constantly, over a long period of time that can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like, serotonin, oxytocin, and dopamine are no longer in balance to counter the feelings of uselnessness, loneliness, and hopelessness. What might be a passing thought, thanks to the rigors of chronic illness, becomes a spiraling pit of despair. Pain gets into your very soul, and exhausts every resource. 

This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness and pain swallowed me up.

If anyone is reading this and is being swallowed up, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has blocked. 

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be. 

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning things from this battle that no one can ever take from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing. If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them? 

You can do this. Though you may be exhausted and even fragile right now, you aren’t even sure how you’ll go on another day. The pain is pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every treatment, surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today. 

You are beautiful. Sometimes we lose touch with our bodies, to separate and protect ourselves. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (PS. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.

You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from our loved ones. Who we were can float away, and illness begins to take us over. You are still her! You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s. 

One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perspectives change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness. There is no doctor or article online that can assure you of what tomorrow will hold. As much as your body and mind yell words like “incurable, degenerative, progressive, comorbidities,” instead let HOPE be your weapon of choice. 

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

-Mary Mattio

@abodyofhope
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

A Health Advocate’s Response To Andrew Kolodny 


This was my comment in response to the article that was in the national pain report on October 3, 2017. The article was written by Ed Coghlan,  the publisher of the health news magazine the “National Pain Report”. I thought that this was important for people to see!  Here’s the link to the exact article in which Andrew Kolodny was offered to write something in Response to my article the “Pain Wars”, that he did not like & thought was “unfair“.  Here’s my comment:

“What Ed is saying is spot on exact! I know in my heart, that some of what I had originally written are Kolodny’s “opinions”, we all are aware of those; because he’s proven his opinions over and over again to all of us. But it’s true, there were two issues to which I could not find an exact citation. I rewrote the article with citations down to the details. This time there was no reaction from him? The fact that he thinks Intractable and/or chronic pain patients should be able to be ok with Tylenol or Ibuprofen is just laughable. It reads on the bottle of Tylenol “for minor aches and pains”. Obviously Andrew Kolodny, Psychiatrist; has not ever lived with chronic intractable pain. What’s interesting is that he doesn’t treat Chronic pain either!How is he able to dictate what happens to the chronic pain patients?

What I find also odd, in a way, is that he thought what I wrote was “unfair”? What about what he’s doing to a large number of chronic pain patients? I want to scream that it is UNFAIR that he is responsible for the rise in suicides due to the immediate drop or quick tapering of our pain communities medications that are & have/had been used as directed and reasonably. He has our communities deaths from suicide on his conscience, on his hands. He is lying to the people, tugging at unknowing, good peoples heartstrings, so to speak. By telling them that these medicines are killing people and they are dangerous etc.; he is getting many of these people side with him! They are only “dangerous” if misused or taken improperly, just like anything else! Water is dangerous and you can die if you drink too much!

The Dictionary’s definition of “enemy” is = a person who is actively opposed or hostile to someone or something. Also it states that “enemy” is a thing that harms or weakens something else. Well, Andrew Kolodny M.D., may harm us and we may die due to suicide or increase BP and HR from higher pain levels; because of his opinions. This is on his conscience as well. But he will never weaken the strength of compassion and endurance in the chronic pain community of the USA.

What I don’t understand is why can’t the government officials see through him?

Why don’t they see him trying to have “saving the addicts” (certainly not saving the chronic pain patients) as being his claim to “fame”? Why can’t anyone else see that he owns treatments centers with a “revolving door” policy and he makes a ton of money off these poor people? He tries to tug at the heartstrings of those who have lost loved ones to addiction. Chronic pain management and addiction management are two different areas. Those who have lost someone want all Opioids gone now, because someone that they love has passed away due to addiction and /or the misuse of opioids. That’s horrible and terrible and unimaginable to say the least. But Well, now we, the chronic pain community are losing people daily; due to the quick tapering and abrupt ending of opioid treatment to chronic pain patients. Chronic pain can kill as stated in the National pain report article from June 20, 2017. The terrible true fact is that Opioids don’t kill people any more than guns kill people? If you misuse either of them, you can die. If you don’t follow the instructions of a legitimate pain management physician; (*who went to school for many years longer than Andrew Kolodny, to learn specifically about how to manage chronic pain), then you have a higher chance of dying from overdose. One can overdose on insulin that they have in their home for Diabetes. Just as someone on High blood pressure meds, anti-depressants and other medications can overdose if they misuse their medications. We are not children and if we are responsible adults who are doing well on opioid therapy and do not get high, do not ask for more, are not groggy or foggy from the medications, and we don’t take more or less than prescribed; then we should have a right to live our lives in as little pain as possible!

They need to totally get rid of the CDC guidelines start over from the beginning. They need to do so with educated pain management physicians and not PROP and /or treatment center owners who stand to make money from the drop in pain medications. This entire conversation has the pain community afraid, panicked and in more pain because of their fear of living in pain or dying because they cannot live with it.

It seems to me that Andrew Kolodny will not write in this blog because he knows that Ed Coghlan is an upstanding publisher. He doesn’t allow people to use propaganda or say things that cannot be proven. This Health News magazine has a great reputation and that is because many peoples voices are allowed to be heard. Ed offered Andrew Kolodny to have his voice heard here, in this venue. But that won’t happen because here, he is the “enemy” and not the “star”. These are only my own private views.”

How Great Thou Art -ASL


A beautiful song was in my soul today! I went to church and asked if I could use the chapel! So this is “How Great Thou Art” sung by Carrie Underwood! I hope you get chills like I do!

We ARE In The Room



If you visit the Emergency rooms in Michigan, you see and feel many horror stories.  I don’t visit the ER and have not since 2007, when I was diagnosed with CRPS.  I had chronic pain even before that, from several chronic pain issues and illnesses stemming from a car accident and other reasons. But the last time that I went, I was treated like a pariah because I was taking pain medication.  They never asked me about all of the different therapies and non-Opioid medications that I’ve tried.  They don’t know all that I’ve been through.  They also don’t even ask me if I’ve ever been addicted to anything in my life.  The answer would be “NO”. I’ve never smoked anything and I don’t even drink “once in awhile” socially, not ever!  Yet, the Dr.’s and nurses treat people that take small amounts of pain meds as if we are someone to be scorned.  The amount has gone down but it’s not ever going up.  It works for me and for about 25% of the chronic pain population. Only 1% of  legitimate chronic pain patients ever become addicted to pain medications given to them by a pain management physician.  For some people this is what works after numerous other medications and therapies have failed.

I want to share with you just an overview of something I read in a Detroit Newspaper article yesterday (Link to Detroit news article  .  This is what is happening in Michigan in 2017. I’m praying for change and I’m going to advocate to help the legitimate chronic pain patients. I have already written to and gotten a response from the other letter that I wrote to the White House and Governor Chris Christie.  All that I got in return was a fancy form letter from “The White House”.   I can’t give up.  I refuse to give up hope, without hope, we have nothing left.  We must not give up and we need to keep hope alive.

This is just the summary of what actually happened to a family in Michigan.  I read in our Detroit, MI newspaper recently, and it is just a summary:   “Over on a gurney, a woman screams out writhing from pain. A Dr. stands idly by, just watching a monitor. He stood away from her as she was doubled up in pain, screaming about pain in her abdomen.  Her husband walked in and saw this and he new about his wife’s chronic pain condition(s), but had never seen anything like this from her.  The Dr. was expressionless, as if she was not even in the room and as though she was a non-feeling “thing”, a non-being person with feelings and a soul”. Imagine if it was his wife, his mother or child? Would he still feel the same?

So moving on, …”as the husband approached this so called “Dr.”,  the physician was startled and reached out his hand to introduce himself. He said to the husband, “yes she’s “complaining” about pain. He said “we will “try” to address it. Next, he said something horrifying, but not new to our American chronic pain communities.  He said “addicts often come to the emergency room looking for opioids”.  The woman’s husband knew about her medical condition and he knew enough to realize that something must’ve gone terribly wrong after the nerve block procedure she’d had done earlier that day, while he was at work.  They’d been to Cleveland and Mayo clinics and even to the U of MI hospital. This poor woman had gone through numerous medical procedures and attempted over 40 medications. They finally had found a regimen that worked to relieve enough of her pain so that she had some semblance of a life now and then. The only effective regimen was very complicated but it included Opioids”.  The way she was treated just recently, in 2017 is barbaric to say the least.

This is happening not only here in Michigan, but all over the USA.  Just today, 9-17-17, I read an article that was sent to me through my email. The article written by Julie Mack in “MLive”, discusses many statistics about Michigan deaths from “overdose of Opioids, including Heroin”. Opioids for legitimate and suffering chronic pain patients and Heroin, should not even be compared in the same sentence; let alone included together in the same article showing numbers of deaths.  The article even states that “these numbers are based on death certificates and list only deaths that specify “Opioid and/or heroin” as a factor”.  I want people to see the difference here. Legitimate chronic pain patients who’ve been doing well, taking opioids, after trying many other methods to relieve their pain; are not even in the same same category as heroin addicts.  Unfortunately, from the death certificate, they just lump everyone into one category and that’s hurting the pain patients.  We are suffering due to the ignorance of certain Government officials and the paralyzing fear that has been put into our legitimate and caring Pain management physicians.

In Michigan, a bill was recently introduced into the House of Rep.  This HB 4601 would put absolute limits on the dosages that chronic pain patients may receive. The patient’s medical history, illness(es) or lack of any proof of abuse or addiction are suddenly irrelevant. The Government would be mandating that “no doctor may prescribe opioids to a chronic pain patient exceeding 100 morphine milligram equivalents per day.” No matter what! Oh my goodness, everyone’s bodies are different and dosages can affect people differently.  If this bill goes into law,  legitimate pain patients will be bedridden and writhing in pain.  Please help us and learn about this side of HB 4601. Our Michigan Government needs to step in now, to help other government leaders and those in Washington D.C., to understand this huge gap between pain patients and drug addicts. There are two distinct groups included in HB 4601, but we are being “lumped together” as one.

In Oakland County Michigan, the Board of Commissioners has taken a stand against this historically old proposal. They unanimously passed a resolution stating that HB 4601 “infringes on a doctor’s ability to care for patients by substituting  the Legislature’s opinion for the opinion of individual medical professionals.” The board also advocated a balanced method “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary”.  Please help the chronic pain community. We are human beings and we deserve our rights and our lives protected by the state of Michigan and the USA government as well. Please don’t take the rights of our educated physicians away from the decision making process. Educate them more in the area of chronic pain management, but the doctor patient relationship should still stand.  Our Senators, Governors and even our President, need to be educated in this area.  They need to understand the differences between addiction and dependency; along with the difference between drug addicts versus legitimate chronic pain patients.

I implore you to help stop this in Michigan and everywhere. I understand that balance is hard, but we need to think of the real people that HB 4601 affects.  Slashing dosages of opioid pain medications or taking it completely away from people that it has been effectively helping is cruel and abusive. This is America! What is happening to us when the government steps in and takes away a doctors right to treat his patient effectively?  If we can focus more on the people, we would start tailoring laws to address societal harm and avoid legislative dragnets that sound good in headlines but bring danger and harm to too many  citizens. We need to do better for the legitimate chronic pain patients for whom all other methods have failed.

We ARE here, we ARE in the room.  Please join me in helping to make the government and elected official listen to our plea!

Excerpts taken from DetroitNews.com

9-12-17 “Opioids Treat Real Pain; Don’t Limit Drs”