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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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:

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~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

The Enemy of The Pain War


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I know in my heart, that some of what I had originally written in my first “PAIN WARS” article (9/19/2017 see it in its almost original form below—I did still change a few small details. But for the most part, the original article is below ) in the National Pain Report), are Kolodny’s true “opinions”.   We all are aware of those; because he’s proven his opinions over and over again to all of us. But I made a mistake and 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; no response 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, the shrink/Psychiatrist; has not ever lived with chronic intractable pain. What’s interesting is that he doesn’t treat Chronic pain either!
IF he is not educated in the treatment of chronic paian, then how is it that he is able to dictate what happens to the chronic pain patients?

What I find also odd, in a way, its that he thought what I wrote in the original article 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 been used as directed and in a responsible manner. He has our communities deaths from suicide on his conscience and 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 to 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 to an overdose 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, 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, then you have a higher chance of dying from overdose. People 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! Nobody should be forced into having risky and/or expensive surgeries either.

Whatever works for each specific person, is what should be done to allow that person live the best life that they possibly can. If medical marijuana is legal for you and it works, then you should be allowed to make that choice. If acupuncture, yoga or meditation relieves your pain, then so be it. Everyone should leave you to do whatever works for you. But for me, with my complicated medical history, Long QT syndrome and more; the opioids have no side effects and they are still working, without raised doseages.

They need to totally get rid of the CDC guidelines and 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 respond to the National Pain Report 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. That Health News magazine has a great reputation and that is because many peoples voices are allowed to be heard. Andrew Kolodny was offered the chance to have his voice heard.  He wont respond because in the pain community, he is the “enemy” and not the “star”.

These are my own private views.

                 Pain Wars – Uncensored 

(*This article was posted originally and then removed because I made a mistake. I failed to post 2 citations.  I rewrote it, changed it a bit. I added some information and subtracted a few items. The end result was posted on National Pain Report on September 20, 2017)

There’s a lot going on with regards to chronic pain during the month  of September. There are events and fundraisers in the name of raising awareness for persons living with chronic pain illnesses.  These are good things and they help dismiss the myth of the chronic pain patients. We are not addicts; we aren’t complainers or whiners. We are real people living with chronic pain and high pain illnesses 24/7/365. The majority of the chronic pain population sees a pain specialist, a Dr. who helps with pain, or we visit a pain clinic and do whatever it is that is requested. Whether it be to urinate in a cup, give blood or jump through any and all of the other hoops asked of us, we just do it. The end result is to relieve our pain.
But our day to day life, as hard and complicated as it can be, is becoming more difficult. This doesn’t help with things such as depression and/or anxiety; which often go hand in hand with chronic pain, especially in these uncertain times. There are things that are happening around us that we feel no control over. Our feelings are correct. I read an article the other day that pretty much says, Andrew Kolodny, a PROP (Physicians for responsible Opioid prescribing) physician and Dr. Jane C. Bellantyne, the president of PROP; both feel that we all need to just, in other words; “deal with it”. Bellantyne says that “patients should pursue coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.” They both have said that “patients should not focus on reducing the intensity of their pain, but their emotional reactions to it”. I’m feeling that maybe the two of them need to take a “pain challenge” and be part of an experiment where they somehow feel the pain that many of us feel and they don’t know the time frame for how long they will feel that way? I’m not sure they would feel the same way afterwards, are you?

Andrew Kolodny is a proponent of a law that can detain pain patients against their will. According to the National Alliance for Model State Drug Laws, 37 states already have statutes that allow substance abusers who have not committed a crime to be briefly detained against their will. Often they must find that the person being committed is a harm to themselves or others. Well, that is “substance abusers”, but Kolodny wants to increase that statute to include chronic pain patients deemed to be taking “too many” Opioids. But to Kolodny and others, this can be subjective, what is “too much”? Are we still living in America? If this is the case, then why aren’t we putting people away for having heart disease then, if they continue to smoke? We don’t institutionalize persons who are diabetic and who don’t manage their diets well? (Yes, I’m being facetious here but just to make a point).

Kolodny and his minions feel that pain patients and drug addicts are not two distinct groups. He says “the opioid crisis is about addiction, and the reason that overdose deaths are at historically high levels and the death rate for middle-aged white Americans is going up, is due in large part to the epidemic of opioid addiction with overdose deaths occurring most commonly in people with legitimate prescriptions.” Do we have a buzzer or a gong here? May I push it? Andrew Kolodny you are wrong! The problem is actually illicit, NOT MEDICAL, drug use. A Cochrane review of opioid prescribing for chronic pain found that less than one percent of those who were well-screened for drug problems developed new addictions during pain care. A more recent review put the rate of addiction among people taking opioids for chronic pain at 8-12 percent. What this truly means to us is that all of these limits on Opioid prescribing for chronic pain patients puts us, the pain patients, at great risk of harm. But guess what? It is not going to do much to stop addiction!

We, the chronic pain community not only have to live with physical agony but with this “Opioid Crisis”. The the true crisis is that the chronic pain community is losing access to reduction of their pain. This is affecting the patients work, if they in fact are still able to work. It is also affecting our families, relationships and at its worst, our sanity! The American Academy of Pain Medicine says that there is a “civil war” going on in the pain community. Their president, Dr. Daniel B. Carr, says that “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain”. Our Pain specialists are saying that nothing can be done? We must continue to stand up and keep fighting for what we need. Andrew Kolodny says that in the end, chronic pain patients need more and more opioid medications in order to curtail the pain. But there are an abundance of pain patients who never increase their dosage of opioid medications throughout many years. They are are still getting pain relief. Stanford University’s Dr Mackey said that there are some risks for some people but that “nearly 15,000 people die each year from anti-inflammatory medications like Ipbuprofen. But people aren’t talking about that?” He also feels that “there needs to be a thoughtful balanced approach”. He said “Opioids are a tool-they’re more often a fourth or fifth line option.”

What’s happening right now with this crisis is that pain patients are having their medications taken away “cold turkey” or reduced greatly; thus causing them great pain and torture. All of this just proves how the PROP Dr.’s and others, are taking the CDC guidelines to the extreme and hurting and demeaning innocent people who already have to live with sometimes several chronic high pain conditions. What I find interesting from my own research is that many of these PROP Dr’s like Kolodny and Ballentyne,, have a lack of empathy and also have a stake in making money off of chronic pain patients; in that they own drug treatment facilities. We’ve got the medical wars on one side and then the government people stepping in, who have no idea what they’re doing. All that they know is that “drugs are bad”.

Turn Your Fear Into Action



Yes, it’s a sad day when the U.S. government starts messing with the Dr. and patient relationship. Our legislators are not trained in the management of chronic illnesses nor in the management of chronic pain. This is also true for the pharmacy chains. Since when does a “drug store” get to tell a legitimate M.D. that they won’t follow their instructions? The chief medical officer at CVS health says “We have some situations, in which we feel that there are certain physicians who are prescribing way too high of doses and way too strong of medications,” he said. They are now beginning to limit prespcription opioids. But they don’t have a Dr./patient privilege. They do not know what is wrong with each patient in any given situation, due to that privilege. So I just don’t understand how they are the ones to control this situation? In my opinion, this is for publicity due to what is happening right now with all of the hype of the so called opioid crisis. There are legitimate avenues for the pharmacy chain to report certain specific physicians about whom they are concerns. There seems to be no reason to punish the entire medical profession and pain community for the sins of a few.
 The CVS policy is going above and beyond the “VOLUNTARY” recommendations of the CDC guidelines. These guidelines were given and intended to be only advice for Primary care physicians who treat chronic pain patients. This is even taking the patient care out of the hands of the trained pain management physicians, in my opinion. In an article in Today, by Charles Shamard M.D., on September 22, 2017, it states that CVS plans to roll out the initiatives to control opioid abuse as of February 1, 2018.

“Daily dosage limits will be based on the strength of the painkiller and CVS pharmacists will require the use of immediate-release formulations of opioids before extended-release opioids are dispensed, lowering the risk of tolerance to the highly addictive drugs”.
Stop and take a deep breath, just for a moment. Think about this logically and clearly for a moment and make sure that you read everything you can get your hands on before you become terribly upset. I totally and 100% understand why the chronic pain patients and many physicians in the communities are upset. The government and pharmacies should not be controlling or meddling in these kinds of situations. But if you look closely and think very clearly, this is for new prescriptions. Also, if. You have ever had surgery, the first 7 days are the worst, right? If you need more, then the Dr. may possibly be able to write another one for another 7 days? But in opioid naive persons, a 7 day supply may be alright following a minor surgery? I feel that the surgeon would be the one to know for how long his patient should need to take stronger pain medications. Just try to remember that most of the new guidelines are not for legacy chronic pain patients, who have been doing well on opioids for several years and on steady doses. 
This is the time to not over react and not just complain. This is the time to put on your “thinking cap” and get to work. Find out who your legislators are and send them an email. It’s super easy to do. You just google your state and add “.gov” after the name of your state. A list will appear and you can choose who to write to. Go to the link that says “contact” and send them each an email. You can do it from your bed or your sofa and from inside of your own home. You don’t have to go anyplace or use up much energy. Write something kind and to the point. Most of them do not know the difference between addiction and dependency. They are just going along with the mainstream media hype concerning opioids. You may find that their hearts are in the right place but they just haven’t received any positive information regarding how helpful the opioids can be to some persons with long term chronic pain and chronic pain illnesses. They may not know about how the suicide rate has been rising since all of these restrictions have been put into place. According to Dr. Stefan Kertez, M.D., “A significant number of chronic pain patients are killing themselves, and that should be a concern to a society at large when people die as a result of something done to care for them.” These CDC guidelines are not a law. They are “guidelines” and mostly for Primary Care physicians and not legitimate Pain Management Physicians. But most certainly, I just cannot imagine that they were meant for pharmacy chains. 

Comment:  A friend of mine, named Bob Schubring, wanted to write these comments but WordPress isn’t working properly & it won’t allow People to leave a comment? I don’t understand what’s wrong but I did want his comments to be seen: here are the comments from Bob Schubring :  

Hi Suzanne:

Patients need to form a union.

Individually, we are powerless against corporations, politicians, bureaucrats, and demagogues. If we organize, we can get a lot more done.

A starting point for a National Patients Union, is to create one of the new Association Health Plans (AHPs) that are about to become legalized by an executive order, that will allow people to shop for health insurance sold in another US state, than the state they live in. If we patients unionize ourselves, we could create an AHP and buy healthcare at the best available rate, bargaining collectively with the insurance corporations to get that rate. Our union could bring great pressure on a corporation like CVS, because we could offer them an alternative solution to their governmental problems, than the cowardly solution they are now pursuing.

CVS’ cowardly fear, is that they will be sued for malpractice, whenever a liar checks into a rehab clinic for addiction treatment, then comes out seeking money, and sues CVS for “enabling” his addiction. And CVS’ cowardly solution, is to form an alliance with an enabler of al that lying, addiction “expert” Andrew Kolodny, and attack pain patients and everyone else who is not an addict.

What a National Patients Union could do, is offer the competing drugstore chains the exclusive right to fill our prescriptions. As a union, we could simply agree not to make lies up about the causes of addiction nor to use those lies to win money we don’t deserve, in court. That would give the competing drugstore chain that wins our business, the same protection that cowardly CVS wants to get from liars and cheats, by attacking the rest of their customers

________

That’s my comment.
Hope you are having a low-pain day today.

Bob Schubring

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.”