I Cannot Do Everything, But I Can Do Something


Don’t let anyone tell you that one person cannot help to make changes within our society. When someone takes the necessary steps to help make changes happen, they are assured to be part of the outcome. Let me make this less obfuscatory and explain it in a more concise way. Back in the Summer of 2017, I had read an article from a Michigan newspaper, that explained how a husband had gone to the emergency room of a hospital, to find his wife (then girlfriend) on a gurney, writhing in pain, while a physician stood by watching monitors. The emergency room physicians had “marked her as a drug addict”, before knowing any of her history or taking the necessary steps to find out. The Dr. told her husband that his wife was “complaining” about pain. Then in his next sentence, the Dr. said that “addicts often come to the emergency room looking for opioids”. The husband was very upset by this because his wife was not normally a person who “complains” often. He knew she’s had a “nerve block” procedure that day and something must have gone wrong. She has had damaged nerves in her back since a skiing accident long ago. She had had tried over 40 medications and a number of procedures. The only thing that had helped this chronic pain patient who was lying there in horrific pain, was a “complicated treatment plan, which included opioids”. The emergency room physician finally relented and gave her just a fraction of her regular dosage, but this was at least enough to get her out of there and taken home.

This story is not unlike many others that I’ve been hearing and reading about for the past couple of years now. Some of the stories ended much worse that this one. What if this woman had no one there to advocate for her? I was upset by this story and it stirred something inside of me. Not only does it tear me up inside to hear stories of others being treated badly, but also, I am a chronic pain patient. I had already written letters to the President of the United States, the head of Health and Human Services, to my two Senators, my Governor & Lieutenant Governor. I wrote about the under treatment and loss of treatment to the chronic pain community since the CDC guidelines were revealed and then used as if they were “law” of the land. I had found out about a new Michigan HB-4601 that was going to become a law in the Summer of 2018, if I did not try to do something to change it. I decided to write a “plea for the chronic pain community” a bit closer to home. I sent a letter to the representative for my district, in the Michigan House of Representatives. Instead of the regular “form letter”, I actually received a note from him; asking me “if there was anything he could do”? He told me to contact him, “if I had any questions” and so I did. I asked if he would meet and speak with me for a few moments regarding HB-4601(*this was a House Bill that was to become law on July 1, 2018. Stated in that bill, was a 100MME ceiling limit for all chronic pain patients. Mixed into that bill, were new rules about acute pain. There was a 7 day prescription limit & persons had to physically go into the physicians office after the 7 days were up; and then go to the pharmacy to get the new script if needed. There was a bit more, but that was the gist of it).

I met with my House Representative because I just needed to do something to try and change this upcoming Bill so that it would take become the law. I don’t like to complain unless I know the I’ve done all that I could do to help others and myself, if needed in the future. If passed, this law would make a 100MME for everyone with the exceptions being: hospice care and cancer care. But the FDA already stated that “there was no scientific evidence that cancer pain was any different than other chronic pain conditions”. (*This information is found by googling: fda-2012-P-0818. Then by looking on page 9, paragraph 3 of this “e-copy” response to Dr. Andrew Kolodny, from the Department of Health & Human Services on September 10, 2013.)

I went to my meeting with confidence, kindness and some research that I had done. Human beings metabolize medications differently, as do various illnesses. I spoke to him about the HB-4601 and I told him my own story. He saw a person and could put a face to this issue afterwards. For the first time, he was introduced face to face, with chronic pain in a real person who was sitting across from him, talking and sharing.

At first, he was taken aback that someone could be on a normal dosage of Opioid pain medication and not be groggy or sleepy or “high”. He told me that he had not thought about the difference between dependency and addiction. We had a very nice conversation and then we went our separate ways.

Afterwards, I sent him Kate Nicholson’s “Ted Talk” and the information from George Knapp’s video about Opioids and the “The Other Side of Opioids” . Whenever something that might help the pleas of the chronic pain community became available; I would send it to him. My hard work finally seems to have helped. On December 28, 2017, Michigan’s Governor, Rick Snyder signed into Law, SB-027. That Senate Bill which passed, is now Public Act 251 of 17. In researching that law, I found that there is allowed a partial fill of a prescription for acute pain. It limits a first prescription to 7 days and then a physician can verbally call in to the pharmacy or fax a subsequent prescription for acute pain, if needed. This is good news for the chronic pain community of Michigan. That HB-4601 is now going dormant and nothing more will move on that, according to what I was told by the House Reps secretary. The entire Law or Public Act-251 of 17 can be found here: http://legislature.mi.gov/documents/2017-2018/publicact/pdf/2017-PA-0251.pdf

The board, unanimously passed a resolution finding that the original 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 further advocated a balanced approach “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary.”

Government can and must think about and help to resolve the opioid epidemic. Too many people are dying from the abuse of painkillers. But more and more they are realizing that the problem is not the prescription pain medications given to legitimate chronic pain patients; but they are seeing more and more Chinese Fentanyl sent through the U.S. mail service. We need to address this but at the same time we should not have to sacrifice chronic pain patients lives in order to save the drug addicted persons. We don’t have to hurt someone in order to help another. We can protect people and not swing to the extremes, one way or the other. We can be thoughtful and diligent in helping those that suffer the disease of addiction without being thoughtless to the chronic pain community; a group of people already suffering.

I accomplished most everything that I have done, from the comfort of my own home and even my recliner. The only time that I had to go out of the house for any of this, was when I met with the House Rep., in early September 2017. He met with me very close to my home because I’m unable to drive more than a couple of miles for “personal errands’. We met in a coffee shop and had a very real conversation. We must let our stories be told and our faces be seen. Our government leaders need to hear true stories and see that we are real people who are suffering and who can and will be affected by their choices. In the words of my personal hero, Helen Keller, I say this: “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something that I can do.”

New Year, Old Fear


The New Year always brings hope of a new beginning and fear of the unknown. Especially in this time of unrest and uncertainty; there is a panic in the pain community. I see it around me and I feel it each new day. People are starting to come apart and pull away instead of moving together as a community to fight the thing that we all fear most.

Nobody wants to be left to die. We don’t like feeling ignored and uncared about. Drs are running away and leaving in droves. There’s no one left to listen, care or treat those with horrible & high chronic pain conditions. There are groups sprouting up from other groups. It feels as though there are many who wish to be the one to “save the pain community “. But in reality we each can be our own hero. We need to depend on ourselves to get out of this mess.

Try your best and do whatever you are able to do. I’m sure you talk with your families on the telephone? So call up your Senators office and tell him your story! You’ll probably get a staffer, but that’s OK! Write emails much? Write an email to your state reps, Senators and your Governor. You don’t need to be eloquent. They need to see faces, hear stories and come to know us as a community of real persons. Ask them if they can remember a time when they had the worst pain ever? Tell them that this is how we feel most days! Let them know that our Drs need to do the Doctoring. The government has enough to deal with; and so allow the Drs to make informed decisions. After all, they went to school for 12-15 years, some of them. They do know what they’re doing.

Turn your fear into action and if you’re just too sick; see if someone will advocate on your behalf? If nothing else, we need to realize that we are worthwhile individuals. Each of us has something to offer in this life and we are not expendable. We deserve to have love, respect and caring. We have a right to be taken care of just like anyone else does.

We must remember that there are bad people in every walk if life and in each profession. There are the good and the bad; the ying and yang with a balance someplace in the middle. There are good and bad politicians, teachers, and more. Drs, go into this career mostly because they want to heal and help others. There are bad patients too, but most of us just try to do whatever we are told and we follow protocol.

The thing that those in power are forgetting, is the balance. They are going with an all or nothing attitude. Why not realize that there are many precautions in place now with the PDMP and more? The people who want to break the law are going to find a way to do it! Those who are good, law abiding citizens living with daily chronic pain are the ones suffering. I think somehow they know we are physically weak. They think we are unable to fight for what we need and therefore they will make decisions above and for us. But we are not mentally weak. We must join together as one voice and support each other. There is no glory or fame here! There are peoples lives at stake. The right of every human being to live in some semblance of comfort.

Take Our Hand – The US Pain Foundation


Take our Hand- The US Pain Foundation

It’s the New Year of 2018 and I’m reflecting on this past year, 2017. Many people ask me about the US Pain Foundation. They ask me “what does the US Pain Foundation do? What are they doing to help with the Opioid crisis?” I thought I’d explain what they are doing and what kinds of things that I do, as an Ambassador for US Pain.

The first thing to know is that they are not about accolades nor do they have a need to be in the spotlight. They do so much for those of us who live with chronic pain. They rarely ask for anything. I have noticed that when I do fundraisers; they’re more interested in how many people were helped with “Awareness”?

But for right now, I’d really like to inform you of some of the different projects that are going on within this non profit organization. Right now there are so many people being affected by issue of chronic pain patients being under or untreated. They are also being quickly tapered off of their life saving and life giving pain medications. US Pain Foundation saw a need and heard the cries of the pain community and they responded. I also want you to know that they are not all about “rescuing” people; but rather, teaching and giving the tools so that people can help themselves. If you visit USPainfoundation.org; you’ll see a myriad of resources to help.

One of the many things they are doing for the chronic pain community is that they and 31 other patient & professional organizations/groups have submitted a letter to Congress. In December 2017, these groups sent a letter urging Congress not to repeal the Ensuring Patient Access & Effective Drug Enforcement Of 2016. If it is repealed, this would hurt protections for chronic pain patients. This law would stop the DEA from limiting controlled substance pain medication distribution in a transparent way; also lacking due process and/or safety! (see this article: https://USPainfoundation.org/news/-31-organizations-speak-repeal-Patient-access-act/ )

The entire move to repeal was ignited by the “60 Minutes”story”EX-DEA agent: Opioid Crisis-fueled by Drug Industry and Congress”, which was on TV in October 2017. The persons at US Pain who deal with many of these kinds of issues, are: Shaina Smith, the Director of state Advocacy & Alliance Development.and Cindy Steinberg, the National Director of state Advocacy.

The US Pain Foundation is being very proactive for patients during this time of unrest and uncertainty. They have devised a plan for patients.. This plan can be printed out and used by patients during an emergent situation; such as being dropped from their pain physician or if they feel desperate and/or suicidal. There’s an article and resource here: The US Pain Foundation is here to help. Here’s a plan to print out & use if you’re denied pain treatment .

Lastly, I wanted to end with this quote from this article: https://www.indystar.com/story/news/2017/11/05/when-Patients-have-give-up-their-pain-medicine-Opioids/776067001 , that I truly was inspired by, “Legitimate patients with chronic pain are being forgotten,” said Paul Gileno president and founder of the US pain foundation. “The disease of addiction is taking over the disease of pain and everyone is forgetting about the Pain Patient.” It is the truth and the US Pain Foundation is trying to give Chronic pain patients the tools needed to feel more empowered. They also have designed a new app called “Ouchie”, where you can keep a log of your pain journey. Then there is Ellen Smith who is helping with another alternative to Opioids, which is medical marijuana. Ellen is a Board Member and she does webinars and teaches people about the correct use of medical marijuana.

There is a whole Myriad of options for programs and resources found on the US Pain Foundation website. We have Awareness programs, Educational programs, Support programs and fundraising programs. So please go and have a look around at www.uspainfoundation.org . You are welcome to always ask me anything, but please know that the US Pain Foundation is there for all of us!

(These views are my own & not necessarily the views of the US Pain Foundation)

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

Pain Acceptance, The Newest Lie


As I was listening to the Vox.com podcast a few days ago, I heard the voice of PROP’s president, Jane Ballentyne, surprised and complaining about how she’s been treated recently. After hearing about her belief regarding the “acceptance of pain”; several pain patients wrote negatively to her in the comments of articles and a podcast.  Some people even wrote to her employer at the University of Washington and wanted her fired, she says. I’m wondering, why she is so surprised? But obviously those who agree with her and think this is a good idea, have not lived with daily, unrelenting, horrible pain such as the kind that comes with  illnesses like:  CRPS, Ehlers Danlos Syndrome, Ankylosing Spondylosis and many others.

What I don’t understand is that in these modern liberal days of persons not having to accept anything else about themselves, why are pain patients being forced to “accept” their pain? Today in 2017, people are allowed to change their gender, nationality and  their bodies.  There’s nothing wrong with a man becoming a woman, or a Caucasian man becoming a Filipino woman; as I saw on the news the other night. In 2017, there’s nothing wrong with a woman getting liposuction on her hips, if she feels they are too big, or breast implants if she feels those are too small. If other human beings are “allowed” to do all of this, then why are chronic pain patients supposed to or urged now, to accept their torturous, horrific daily 24/7/365 state of living with chronic pain?? Now days nobody has to “just accept” anything about themselves. Something is really “fishy” here? In my own personal opinion, I feel like the United States is trying to kill off it’s weakest and most vulnerable chronic pain patients. Why do you think this might be the case? Again, my thoughts are that it is because they are concerned that the “baby boomers” are going to deplete the Medicare/Medicaid system and there won’t be anything left soon. Why not “get rid of” the sickest and most weak of Americans to save some money? I don’t know this of course, but it sure is a scary thought when everyone else is allowed to surgically change everything about their gender, race and body; but the chronic pain patients are now not allowed to have the simplest pill that can help to lower their chronic pain.  Suddenly, opioids are now being considered evil and all must be destroyed.  We must learn to “accept our pain”.  I don’t want to just accept my pain, anymore than someone who feels that they were born the wrong gender, should have to stay that way forever and just “accept” it.

So I’ve been researching other countries and speaking to other chronic pain patients around the world, thanks to the internet.  I was discussing the “opioid crisis” with my friend in Israel.  He sent me a piece of information about a University of Michigan Coursera. You can look at what I looked at here:  Teach-Out: Solving the Opioid Crisis/Coursera.  He told me that he had been seeing what’s happening in the USA and how concerned we are about the topic of Opioids.  He wanted to know if this was truth or not?   Naturally,  you must take the course to learn about what they want you to know. But just from the introduction that I read, it is packed full of disinformation. They tell the same “lies” that were exposed in Andrew Kolodny’s article “The Opioid Epidemic in 6 Charts”. Josh Bloom, a journalist and PHD, exposes how Kolodny, those that follow him, and some of the media (it seems), are changing the truth to their advantage. In his article, The Opioid Epidemic In 6 Charts Designed To Deceive You , Josh proves how in Kolodny’s orginial article, The Opioid Epidemic in 6 Charts, deceives us with false numbers.  The first sentence that Kolodny writes in his editorial states “drug overdose deaths” are about 60,000 annually. When we see that we immediately think that he’s talking about prescription pain medication overdoses. But, Josh Bloom points out that actually 30,000 people were killed.  This included all opioids including heroin.  The actual true number of deaths just from prescription pain medications or opioids used for chronic pain; was about 17,000.  Also, in Mr. Blooms article as cited above, he states that the number of 17,000 is “half the number of accidental falls”.  But 17,000 is not exactly right either, because that includes all opioid overdose deaths which were in combination with other medications.  The true death by opioid pain medications is about 5,000, according to this same article.  That is much less than Kolodny’s original “60,000 deaths”, scare tactic, from drug overdose.

Also, why are we not looking into the deaths by alcohol?  According to the NIH (National Institute of Health), the NIAAA (National Institute on Alcohol Abuse and Alcoholism) and this article Alcohol Facts and Statistics, “88,000 (62,000 men and 26,000 women) people die from alcohol-related causes annually”.  This makes alcohol the third  preventable cause of death in the United States. Do you know that the first and second causes of preventable deaths are from tobacco and poor diet/physical inactivity? So why are we not talking about the Alcohol and/or tobacco related death epidemic? Do you want to know why? I know I sure would like to know the answer. I know that my friends in other countries are telling me to come and live there. They don’t understand why this is happening over here in the USA? The friend that I was referring to earlier on, who lives in Israel; cannot believe that this is happening to the people he knows here in the USA.  He even said that he sent me the information regarding the Coursera, because he “had a feeling they were lying”. He asked me “Do you have any guess why they are doing all of these things to hurt all of you?” The only answer that I could come up with is, “Money”. The reason that I stated above, regarding Medicare/Medicaid and the baby boomers. I was embarrassed to say that to my friend, but I still did. His response was “this is horrible”. He said that “in Israel you can get as much as you need; as long as it is opioids and not medical marijuana”.  It is totally opposite of that here in the USA.  In Israel, the primary care doc can prescribe what he believes will help the diagnosis of his patients. Imagine that! Oh wait, that is how it used to be here in the USA also! But not anymore!  I asked my friend if his primary  or pain Dr. helps him more? He told me “My primary helps me, of course! She helps the most.  She is nice, caring and gave me the pain medication with out any pain doctors advice.  On her own, because she is a DOCTOR herself…..you know? AS it should be”! Also, as I feel it should be in the United States once again.

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.