A Letter To Our Leaders, Regarding The Pain Crisis


I have copied and posted below, this 2nd & 3rd letters that I’ve now sent to our President and several other politicians/legislators. If you have someone else that you’d like to send this to, please feel free to copy & paste my letter and send it to any legislators.

Here’s a list of recipients so far:

  • President Donald J. Trump, 1600 Pennsylvania NW, Washington DC 20500
  • Michigan Senators Debbie Stabinaw & Gary Peters:
  • 1: senator@stabinaw.senate.gov
  •  Senator Gary Peters  C/O Patrick V. McNamara Federal Building, 477 Michigan Avenue, Suite #1837, Detroit, MI 48226

**my US state of Michigan representative Hailey Stephens: Washington, DC Office   

**my US State of Michigan representative District #20:

***mailto:MattKoleszar@house.mi.gov

Dear Mr. President,

I represent only one out of 100 million people in the chronic pain community. Out of that number, there are an estimated 26 million of us who urgently need your help.  Many people in the United States of America are  dealing with horrific pain on a daily basis.  I stand along with them  & implore you to help put an end to the violation of human rights that is taking place. 

The CDC, DEA and “Big Brother” Pharma companies are “hurting” the American chronic pain Community. We are losing access to medically necessary medications that enable us to live some semblance of a life. 

We are and have been losing access to our pain relieving medications since the implementation of 2016 CDC Guidelines.  Those guidelines were written by addiction experts and there was not one Pain management Dr. present. They were also written in secret, behind closed doors by a group of people who know nothing about high impact, ongoing, chronic, painful illnesses.

A Dr. should not be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our pain Physicians are leaving in droves because of them & the 2016 CDC Guidelines. 

The  “Opioid epidemic” is about illegal/illicit fentanyl brought here from Mexico & China. It’s not about us, the 100 million chronic pain patients in the USA. Only 1% of legitimate chronic pain patients who are legitimately prescribed opioids, for high amounts of pain, ever become addicted. It’s as though our country is now torturing and punishing people for being ill.

Mr. President, we are not addicts and we are not “addicted”.  A person can be “dependent” on a medication and not be addicted! They are two very different situations. We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their “drug of choice” at any cost.  They look forward to taking them because of the “high” they get. A legitimate chronic pain patient who’s done well for years on a stable dose of opioid pain medication, doesn’t get any sort of “high”.  We also take our medications responsibly.  We get some relief and reprieve from the daily chronic pain that we live with. 

Please help us get back the physician / patient relationship, without interference from Pharmacy’s, insurers, the government and politics.  Please help us to keep our Drs in charge. It should be the decision between patient/physician to choose what is necessary and best for our pain control. They went to medical school and the government did not.

Many pain management Dr’s are leaving the practices they’ve built and the profession they’ve worked hard at, to achieve. They’re  afraid because they are being wrongly targeted by the DEA . They aren’t free to prescribe medications that help to relieve pain anymore. 

People in the USA in 2019 are being tortured and hurt by this on a daily basis. Just yesterday, I read the story of a 94-year-old woman who shattered her kneecap and was taken to the hospital emergency room. They immobilized her knee and sent her home without any pain control at all. Can you even imagine shattering your kneecap and not getting any thing to help with a torturous pain like that?
Mr. President, please help us? I understand there are people who die from overdoses. But they are a totally separate group of people who need a different kind of help. It shouldn’t be at the expense of an entire separate community of citizens. People In pain are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and they’d been living some semblance of a life while on a regimen of medication for pain control. But because of “fear”, Dr’s are taking away the little bit of life that some of us have left. 

I also don’t believe that anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when an inexpensive & safe pill, with little side effects can help so much. 

I implore you to help the estimated 26 million chronic pain patients in the USA, who are “dependent” on opioids for pain control & who are diligent and take these medications responsibly. Help us to get back the freedom of choice. Get us back to the pain management medication regimens that are life sustaining for us with more tolerable pain levels.

Please read my letter and talk to me if you’d like. We need you to understand that we are “chronic pain patients” and not “addicts”! We are just real people living with unfortunate circumstances & high pain illnesses. Please help us to receive the medications that give us some semblance of a life for ourselves & our families.

Sincerely,

Suzanne B. Stewart
Recipient of U.S. Pain Ambassador of the Year Award‘16, Mentor @RSDSA, freelance writer, Blogger/Blog “Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, Director of communications for Deaf/HoH for CIAAG, patient advocate for Deaf/HoH

Don’t be afraid of opioids


There is a gene called “addiction” that some people are born with and others are not. This gene can cause a human being to become an opioid addict. It is not the medication that causes addiction. The medication is just a tool, that if used improperly can become deadly. But again, the medication is an inanimate object or a tool! Similarly a gun is an inaminate object; but when people use it in the wrong way, it can kill!!  Therefore, people should not be afraid of Opioids any more than they should fear Insulin if they are Diabetic. When used responsibly and properly, as the high majority of chronic pain patients do; opioids can give back lives and save families. Just the same way as a gun can save lives and families, when used properly and for specific reasons. The idea that those opposed to opioids for chronic pain need to understand is that

  1. No one will force them to take opioids, so they should stop trying to force a ban on opioids for chronic pain patients.
  2. Opioids don’t “kill people”. They are only a cause of death if they are taken incorrectly (as with most medications) or if they are used inappropriately.
  3. Chronic pain patients are not addicted to their opioid pain medications. They may be dependent or tolerant but again, there is no “high” involved. There is no scrambling for a “fix”

I found more interesting information about the confusion surrounding opioids and addiction. If you try to GOOGLE “how many people have died from PRESCRIPTION drug overdose in 2018 or 2017?”, it doesn’t give you a straight answer! But if you go to this article written by Josh Bloom Who Is Telling The Truth About Prescription Opioid Deaths? DEA? CDC? Neither?  It becomes much more clear what is happening, sort of?

Let me explain in a bit more detail. You see, Andrew Kolodny, the “king of detox houses”  has become very rich.  He appears to be greedy for more. This man just cannot tell you enough about how chronic pain patients and drug addics are in the same category. Yes, it’s true and he says those words directly on this video at time spot:  1:37 to 1:54 Washington Post Video: “Dr Andrew Kolodny; opioid crisis “not and abuse crisis, it’s an addiction epidemic” ….therefore, I have surmised (along with many other advocates, that this man is just trying to prey on those who are lost to addiction and those who have lost someone to addiction overdose. But do you realize (I’m guessing he does not or he’s covering it up?) that the opioid deaths are not from prescription opioids! They are from illicit Fentanyl/Carafentanyl from Mexico and China mostly. These are deaths that are from mixing illicit drugs possibly with some opioids and the PROP and CDC etc. are then calling them all “opioid deaths”.

In Josh Bloom’s article above he shows the lies, the outright blatent lies that people are being told by the DEA and others. Read this quote from his article above, dated 11-5-18, “Controlled Prescription Drugs (CPDs)…are still responsible for the most drug-involved overdose deaths and are the second most commonly abused substance in the United States.”  (from the  2018 National Drug Threat Assessment,Drug Enforcement Administration, October 2018) ….but it’s not true…it’s deceiving. Josh Bloom adds that “there was a newly released 164-page report by the DEA manintaing that controlled prescription drugs are killing more Americans than any other drug”.   He concludes that this is either deceiving or just confusing.

You see, other drugs are included in these “death tolls” from Opioids. It’s not just prescription opioids but there are depressants,  stimulants and other drugs responsible as well. They are all being “lumped together”. There is even a CDC chart in his article that shows how they seemingly intentionally misled all of the readers. The chart shows “drug poisoning deaths” and in very very small print it states “The CDC drug poisoning death category medications” was formerly “prescription drugs” but was changed for two reasons: 1) the category includes Over the Counter Drugs…..” So now OTC drugs are added too this mess as well. He also included that “annual deaths from NSAIDS vary widely they are significant:  3,000-16,000 deaths per year.”

Medications for chronic pain illnesses are not “bad” and should not be causing so much turmoil in peoples lives. The PROP and people like Kolodny and his minions, have decided that they are “evil” and so now they are spreading it like wildfire. There are his drug treatment centers and the creators of Suboxone/(Buprenorphrine-Reckitt Benckiser and others who want to “get rich” by hurting the innocent people who are chronically ill. The RBI corp. even went to far as to pull off a shocking scheme to profit off of heroin addicts in 2016. You can read about that in my other article called “About Suboxone, Buprenorphrine and Naloxone” . Andrew Kolodny even made a statement to the effect of how this generation of chronically ill/disabled persons living with chronic pain need to die off, so that the next generation won’t be addicted to opioids for chronic pain. Can you even believe that train of thought? The next generation won’t even have the option to have opioids for chronic pain (*or experience pain relief). This in an attempt to stop addiction and overdoses from occurring. In other words,  let’s just knock off  the elderly, the disabled and the chronically ill; so they won’t be a burden to anyone, is that it? Get rid of all of us so that we won’t suck the system? So our kids won’t know anything about pain control? They will be brainwashed into thinking that mindfulness, acupuncture and grounding can “cure” chronic pain illnesses? Do people really believe that? I do believe that some of the complimentary therapies may alleviate a minimal amount of pain for the short term. But they’re not a long term answer for chronic pain.  I know of one U.S.A. Pain organization that really “pushes” the complimentary therapies. Consequently they have actually abandoned a large number of the pain community who rely (*or did rely) on opioid medication therapy for pain control. Where are the human rights groups and other organizations who have the power to affect a positive change for the pain community? Why hasn’t anyone physically helped to change the misdirected concocted fear of opioids?  I’d truly like to have an answer for these questions? It’s hard to believe that those who blindly play “Follow the Leader” to the likes of Andrew Kolodny, just want chronic pain patients to “go away”? But as I write this article, there are more states petitioning to become “right to die” or assisted suicide states.  It is already legal in:  Washington DC, California, Oregon, Colorado, Vermont, Hawaii & Washington (still being disputed in Montana). Are we really 100% useless and disposable, like garbage to be thrown away?

Thats a scary thought to ponder! There are people such as Andrew Kolodny and Organizations such as the CDC, DEA and PROP, who would rather that I die than stay here with my husband, children and grandchildren for as long as humanly possible? All I need to be able to do is to take a pill a few times a day or wear a patch and I can live some semblance of a life outside of my bed or the recliner that I now live in for the best part of most days now. The Opioids do not make us “high”. I’ve never been “high” and all they did was take the edge off of a whole lot of pain; due to a long list of high pain chronic illnesses. Most of us, who are living with chronic pain, just want to live some kind of life. Don’t we have that right, just as others without pain do? Many of us were victims of accidents or crimes or just plain unlucky. Why do they want to make our life unbearable? Or even worse yet, why do they want us dead? Is this Eugenics coming back from the early 1900’s?

 

About suboxone, buprenorphine and naloxone


The current Opioid Hysteria was started several years ago with a rippling effect and has become worse over time. A company that has much to gain from this hysteria around opioids is called Reckitt Benckiser. According to this article in “The Daily Beast” from 10-05-16 : https://www.thedailybeast.com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts , the company was about to lose their patent and came up with a “fake opioid hysteria”.  According to this article, “Reckitt Benckiser sought to exploit the nationwide hysteria over the increasing use of opioids to line its own pockets by blocking competition….”.

The drug Suboxone has a Generic name of buprenorphine and naloxone (oral/sublingual). If you visit https://www.drugs.com/suboxone.html you will notice that Bupenorphine is  also considered an “opioid medication, sometimes called a narcotic”.  Naloxone “blocks the effects of opioid medications”. Naloxone also blocks any pain relief or feelings of well-being, according to this article. The drug, “Suboxone is used to treat narcotic (opiate) addiction”. Suboxone is not to be used for any kind of pain relief or as a pain relieving medication. What I don’t understand are the warnings on Suboxone and these medications associated with it in generic form. The same warning is used on the label as is used for many opioids. The warnings state that if you used Suboxone, Bupenorphrine  and/or Naloxone it may be “habit-forming” and can cause addiction, overdose or even death. The company Reckitt Benckiser is trying to get rid of all other opioids so that they can profit off of having a monopoly on their own medications. They claim that all chronic pain patients are suffering from “opioid use disorder” or addiction, in other items that I have read.  Other warnings on the labels of these 3 drugs, state that  some other medications, if taken simultaneously with Suboxone, Bupenorphrine and/or Naloxone, can cause a serious medical crisis called “Serotonin syndrome”. They state that you should be warned and inform your Dr. If you take any herbal supplements, depression medications (*or if. You have any mental illness), Parkinson’s disease, migraines, serious infections or any medication that helps stop nausea/vomiting. The label states that these medications can cause “life threatening withdrawal symptoms”. Some of the side effects are: weak/shallow breathing, confusion, weakness, blurred vision, slurred speech, liver problems, low cortisol levels (nausea, vomiting, loss of appetite etc).  One of the most interesting side effects listed are “opioid withdrawal symptoms” (shivering, increased sweating, runny nose, watery eyes, muscle pain and diarrhea). Tell me again, why this medicine is “better” for chronic pain patients to take than long acting or really any opioids? How are these side effects and warnings any better? Also, as long as a chronic pain patient has been doing well on long term opioid therapy, why switch to something that could be potentially harmful or cause them death? Also, women or men who are still thinking about having or starting a family, do you know that Suboxone can cause infertility (*this article states that long term opioid use can also cause infertility?).  Many other medications will affect Suboxone, such as Benzodiazephines, other narcotic medications & cough medicine. It states that Suboxone is used to treat drug/opioid addiction. It does not say that it is for chronic pain in any way, shape or form.

Don’t let anyone tell you that buprenorphine is “different from suboxone” because from my research it is just a generic form of that drug. It is an opioid but has not yet been approved for use with chronic pain. Dr’s are required to take an 8 hour class in order to prescribe these drugs to patients. They are supposed to be prescribed for addiction and/or substance use disorder. The latter is what our friend, Andrew Kolodny has labeled all chronic pain patients who use opioid therapy, as having. When I looked up the classes online, that physicians, nurse practitioners etc. are required to take in order to prescribe the drug “buprenorphine”; it states this is a  medication for addiction and opioid use disorder. Physicians must apply for a waiver to prescribe bupreorpnine to their patients with opioid use disorders.

I noticed an article last week that was discussing suboxone, that it is only approved for addiction. The active ingredient in this drug is Called buprenorphine, which is known as an “opioid partial agonist”. This just means that it interacts with the same receptors in the brain, as heroin and oxycodone. The difference they explain, is that people don’t get a “high” or “cravings” for buprenorphine. But then why can’t chronic pain patients who have been doing well on opioid therapy for several or many years be left to the opioid medications that they may have been doing well on for many years? Patients who have been on a steady dose of opioids for possibly multiple chronic pain conditions, do not get cravings or high either? Why introduce these chronically ill people to something new, something else that will cause them new and or worse bad reactions/side effects?  I found in this article (www.crchealth.com/addiction/heroin-addiction-treatment/heroin-detox/buprenorphine-suboxone-vs/) that suboxone  contains buprenorphrine and naloxone. The naloxone keeps people from abusing the drug. It is an opiate antagonist. But why would anyone give these meds to chronic pain patients who do not use the opioids for any other reason than to have some semblance of a life with lesser pain levels? It states right in this last article above, that “If you take suboxone as directed…..the buprenorphrine will travel to the brain and you will feel relief from withdrawal symptoms. Chronic pain patients should not have to go through withdrawal symptoms. This is what I’m trying to get through to persons who are “pushing” these drugs on the chronic pain population now.

In this article called “The truth about suboxone” (www.thefix.com/content/stigma-maintenance-treatment9216), Maia Szalavitz discusses maintenance therapy for addiction with suboxone, Methadone or Naltrexone. She explains something that I’ve known to be true about opioids as well. If they are taken in irregular time and dosage then you will get a high. But if you take them in a regular reliable schedule and dosage, then “getting high is visually impossible”. Next, I read an article about different people who had been given the “bupenorphrine isn’t suboxone” speech. They were told that it would help them with withdrawals etc. But guess what? The person who told his story first, in this article, stated that withdrawals from the buprenorphrine were much worse than anything he had expected, encountered or had been told. I read his story here: (https://www.medhelp.org/posts/Addiction-Substance-Abuse/Suboxone-Good–Bad–and-Ugly-Truth—168-days-off-SUB/show/1502381) . I have been researching these drugs.  In my humble opinion as a non-medical personnel, who has been through hell and back; trying different pain treatments and medications over the past 15 years; that I would not ever take suboxone, or buprenorphrine even if my life depended on it! I finally found something that worked to lessen the chronic pain due to several chronic pain illnesses; I agreed to take it after being pressured “to trust them”(doctors). But now only to have it taken away 15 years later because of some crazy opioid hysteria going on so that “he who shall not be named” can become more rich and have a monopoly on suboxone, bupenorphrine etc. by “getting rid of all opioids”.

We live in America and we should be free to have choices as to what medications we want to take, knowing the risks and benefits. Just as we have freedom of speech, freedom to bear arms and now even freedom to have gender neutral restrooms! We deserve the right to have freedom to choose with our own personal physicians who are trained in pain management etc; the right to take the best medications for our own personal situations. The government needs to step away and stop trying to politicize this opioid hysteria. Stop trying to demonize the organizations that support our freedoms of treatment options! This has turned into a deadly nightmare for many of us and now myself included.

***P.S.

I also want to inform you that each time I tried to look up or research “buprenorphrine” it came up as “suboxone”. Buprenorphrine is a generic form of suboxone. In addition, naloxone is the ingredient that immediately makes you go through withdrawals if you do take another opioid/narcotic while taking suboxone. Hmmm….suppose you were in a car accident, maybe like the one that started all of your chronic pain in the first place? Suppose the EMT’s or an ER Doctor gave you an opioid to help with burn trauma or gunshot trauma wounds or horrible car accident trauma? You would be really “in trouble” would you not? Anyways, just another informative message from me to you. I hope this helps someone. Sending Love and low pain your way.

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

This is where I got some of this information:

1. https://www..com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts

2. https://www.drugs.com/suboxone.html

Articles that Explain The Bad effects of suboxone, bupenorphrine etc.

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

*****Several of the articles used in this blog post were provided to me by my colleague & friend, Jonelle Elgaway *** please visit her website at: CAW Nation

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 me because I write truth. I don’t use propaganda or say things that cannot be proven. 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”.

Dependence Does NOT Equal “Addiction”


One thing to know is this …Physical dependence and tolerance are “NORMAL” physiological consequences of extended opioid therapy for pain and should NOT be considered “addiction”….(*FROM “Michigan.gov)determination-quotes-2b65cd82f385b22d6dd21fd2f9ce5bf9f

Hello Luvs,

Today I have so much on my mind and I have a lot of information to share with you. Most of the information that I have is from my own support group, my own experiences and Internet sources (which I will list).  I was in a Motor vehicle accident in 2002. I have been through so many medical issues due to that accident. I have suffered through 8 years of PT/OT, 3 years of MTBI rehabilitation, approximately 10 surgeries, worsening Dysautonomia/POTS/NCS, a CVA (stroke), Mild Heart Attack and just too much to list here today without boring you to tears.  I have chronic pain and along with that, my body ended up with a Neuro-autoimmune disease called “Complex Regional Pain Syndrome Type II”. It’s also known as “Reflex Sympathetic Dystrophy type II”. Some people will call it “RSDII or CRPSII”; as there are two types of this disease: type I is from an Unknown etiology and type II, the one I suffer with, is a result of a Foot surgery in 2007, 5 years following the car accident. My type is also called “Systemic”, which means it is in my body pretty much everywhere now. That happened by accident through years of it’s continue spread.  Then following my 2nd pacemaker surgery in 2013, the absolutely wonderful Neuro-Cardiologist, who did the surgery researched the disease and found that sometimes a surgeon can help prevent the disease from spreading or going systemic, by doing an internal surgical wash of “Bipvucaine”. I was hopeful and happy. I just knew it would work. The fact that he cared enough about me to even try that, made me just feel so happy and cared about. But unfortunately, it did spread and mine is now systemic.

At first I was tested, re-tested, Neuro-Psych tested, Psych tested, Pain clinic tested and given just any and every kind of test available. I had several specialists including:  a Physical Medicine and Rehabilitation physician, G.P, Neurologist, Cardio-Neurologist, Cardiologist, Psychologist, Neuro-Psychologist, Orthopedic specialists of different types and more! I ended up being hospitalized for “Pain control” by the  G.P.that I had been seeing since 1986! When a newer physician in his office came to see me and he was quiet and kind and really seemed to “listen” well etc. I asked if I could “switch” over to him, as it was the same office. It was all good and I had been referred to a pain specialist, Dr. D. Dobritt in Michigan. He helped me for 3 years and I did everything asked of me. I even got a medical record letter from the Pain Pycshologist and Psychiatrist Dr’s that he uses, stating that I do not have an “addictive personality”. I never smoked, drank or did any recreational drugs. I barely ever took an Aspirin if I had a headache prior to that car accident!

I stopped going to the pain Dr. because he told me that he wanted me to have an “Intrathecal pain pump” surgically placed into my spine, which would drip 1/300th of the amount of oral medication I would need. But I had been in an auto accident and I was tired of “fighting” for everything I needed with them. I did win a lawsuit and I was put into “Catastrophic claims”; but still could not get them to pay for the pump. I surely didn’t have the money and my regular insurance would not pay since it was not their place to pay for auto claims. I was going to try the pump trial at least, just to see what comfort it might give me. The auto insurance said “NO” and I’d about had enough of IME Dr’s and fighting for what I needed. I gave up and quit everything finally after 8 years of PT/OT and 3 yrs of TBI rehab and about 10 or more surgeries. I think I told you already that I’d been tested by the Psych Dr’s at the pain clinic and they gave me a medical record letter stating that “I do not have an addictive personality”.  It’s true and even when the Dr’s gave me Vicodin and other meds to try and help my pain, I suffered through the pain and always took less than what I was prescribed. The Psych Dr. even wrote in my letter that “Suzanne does not want to take the medicine for pain as it is prescribed, but instead tries to get by with less”. He continued by writing that He told me to take the allowed or prescribed amount and “not to worry” about it because the Dr. has prescribed it for me.  Well, if you know me at all, I’m a person who does not like being “controlled”. I did not ever want to be feeling “controlled” by some medicine or feel “married” to my pain Dr. !!  As time went on though, I didn’t just suffer from the events of the car accident. I acquired a very painful or the “MOST” painful of all chronic pain diseases, called “RSD- Reflex  Sympathetic Dystrophy” . I was first diagnosed with CRPSII by the surgeon who performed the foot surgery. I got a second opinion only because I’d never heard of that disease before and I just wanted to be certain. I got a 2nd opinion from a well known staff Physician who specializes in Orthopedics of the foot/ankle. Then I got a 3rd opinion and 4th opinion. My pain got worse and I was forced to take the medicine prescribed for me.

When I chose to not get the pain pump, that pain Dr. told me pretty much to “get lost”. No, he did not use those words, but that is how it felt to me. I always was a good patient and did all that I was asked to do and tried to do it even taking less meds than I was allowed to take. He would not even talk to me again or let me set up an appointment, but instead, he had his physician’s assistant, Jim G., give me the news.  He called and told me to “just go ahead and have my General Practitioner, Dr. Pete Bullach Jr, take over prescribing the pain meds because he, as a pain Dr., is “under a microscope” and prefers that the pain meds are not provided via his office. He said that “Dr. could consult with him any time needed”. He told me not to make another appointment because “there was nothing left he could do for me and my pain”. I was devastated because I felt that we had a good working Dr/patient relationship. I felt believed and I believed in him. But as usual, I just did what I was told to do and kept seeing my GP and he did the prescribing.  Unfortunately as my pain got worse due to more surgeries and the spreading of the RSD/CRPSII, and the new diagnosis’ of R.A., Chiari I malformation, Degenerative Disc disease and now Hypermobility syndrome III and more, the doseage was just increasing.  Dr. Bullach just increased my pain meds and offered me no other future or help for the future.

The past 3 years, I was asking him to take me off or down from the pain medications. I was afraid that I was taking too much even though it was helping. He told me time and time again that I should “just let him worry about it”. He also told me that the medications “got me out of the hospital bed that was in my living room” and I “don’t want to go back to that”! He told me to “let him worry about the pain meds and just continue to do what he said”. Every time I would bring up trying to go down in doseage, he would tell me to “just let him worry about it”! He even told me that he had a plan worked out that when he felt ready for me to go down on my pain meds, that he would just put me into the ICU at the main hospital. He would “knock me out” for a few days and they’d watch me carefully because of a previous CVA and heart attack in ’05 and ’06. When I awoke, I would be “off of the medication” and not have to go through any withdrawls, or at least not remember or feel it at all. I would be safe and watched in the ICU. In no way did I feel like I was an “addict” or a “bad person” at that time. I felt that I was doing everything I was told to do by a Dr. that I trusted with my LIFE and my husband’s LIFE!

Well, from my couple of previous posts about this subject, you can understand how totally betrayed and flabbergasted I was in December 2014, when with only 2 days notice, I was told that Dr. Bullach “was leaving and going to work at an Urgent Care an hour away in Jackson, MI”. Later I’d find out that he’d known about his new position since October 2014, but failed to share that information with me and many other of his patients.  In October I had even brought him a letter from my medical insurance company, stating that they would not pay for my pain meds any longer in the doseage that he was prescribing, after March 11, 2015; unless a certified pain Dr.agreed with his treatment plan. I brought and showed him that letter in October and he told me “not to worry at all”.  He said that he “would personally speak to my old pain Dr., D. Dobritt, and he would send a letter explaining everything to him and some of my records that he would need.”  He told me that I had nothing to worry about, that he would “take care of me and of everything”.  When I walked into his office that December day, in 2014, you can imagine how blindsided I felt.  Then later to find out that he was investigated by Federal marshals or agents (I found this out from a legitimate source or several actually)for over medicating many of his patients and he was actually “fleeing” to get out of trouble before trouble came to him first!!  He fled to an Urgent care facility where he’d be incapable of writing such prescriptions again. He lied straight to my face telling me how he was “working too much and he missed his sons and he was going to work someplace else to be able to free up time and be with his wife and kids more often”. It was a bold face lie, he betrayed me and it feels really awful.

I went to the pain Dr. appointment on Jan 2, 2015 and in my previous posts, I think I already explained what happened. I told him that I did not want to and would not go to a “Detox” clinic. That was not what I deserved after being told even by him several years ago to “trust him” and “take the meds prescribed” and that “it was OK and it was safe”. I am a strong and motivated person. I’ve been through alot of terror and frightful experiences, including painful ones. I can do this and I will do this. My husband called and made a second appointment for Dr. D. Dobritt, the pain specialist. He told the secretary that I’d been going down on my own, with the pain meds and that I’d gotten down at that point, at least by 75% of what I’d been taking at the time of my visit one month prior!  I went to my scheduled appointment that was at 8:00 am on Feb. 16th, 2015. If you know anything about pain, you know that is very very early for someone who has a hard time just putting their feet on the floor in the mornings, due to extreme pain. Add into the equation 75% less pain medication and you have a woman in some real pain, but a determined woman who was doing everything on her own with the love and support of her husband. When I arrived at the pain Dr. appointment, they let me sit in the waiting room for about 1/2 hour, only to find out that “the Dr. will not see me”!  What??? Why?? Why would they let me make the appointment? I smelled something rotten going on there and it was an awful feeling.  I had some young office girl tell me that the Dr. refused to see me “unless he had a letter signed from the DETOX Dr. (*Dr. H. Malinoff) that he had recommended that I see at my last visit”.  I told the girl that I’d already gone down on my own 75% or more! I told her that I didn’t need anyone else’s help. I was not an “addict”, I would Never take Methadone or Suboxone and after researching that Dr. who Dr.Dobritt wanted me to see, I realized that he was not for me! A person who is on SSDI for PTSD and who’s suffered at the hands of numerous “bullies”, just did not need another “bully” (Dr.) in her life! I read 16 reviews of this physician. ALL 16 were really bad reviews! People said he was “Dr Jekyll and Mr Hyde” and that he “put them into tears by calling them names”. I don’t go by reviews usually. I know that disgruntled people or patients will write bad things when they don’t get what they want sometimes or when they are angry! I don’t put alot of heart into what I see usually when others write bad things like that about Dr’s or places even. I know that there are disgruntled pain patients out there who want more meds and when they don’t get them, they go to the computer and write nasty things about the person who didn’t get them what they wanted. I know this is true of SOME, but not of ALL!  I know this because I am one of the valid/honest writers & readers not asking for anything except the truth and peace.  I’m not being vindictive in any way.  This is just a venue to allow my readers and other pain patients hopefully, who are like me, to know the truth of what has happened to me and what can happen even to honest and good people.

This “detox” Dr., as I read more about him on his own website; told of a story how he broke his foot and “walked on it for 3 months.” His wife finally forced him to go to Orthopedics and he had a surgery. He tells of how he “went through all of this without taking any pills for pain”.  He also stated how if someone wakes up in the morning, puts their feet on the floor and they have “no pain”…then they should “look in the Obituaries, because they should be dead if they have no pain whatsoever”!  I could not believe this was a Dr. who was revered by this other pain Dr. and the physician in the GP’s office who took over a few of Dr. Bullach’s patients!  This guy who takes people off of pain medications from the moment they walk into his office, and puts them on a program of Methadone or Suboxone or worse; and then forces them to go to 12-step programs can NOT understand what living day in and day out, 365/52/7/24 in chronic intractable pain is like?  Having a broken foot for 3 months and it “hurting when the weather changes” is still not the same as having: systemic CRPS II, RA, OA, Chiari I, Long thoracic nerve pain, bilateral patella femoral pain, Lumbar and Cervical Radiculopathy, Polyneuropathies, and Degenerative Disc Disease all at the same time!! He does not know what PAIN truly is.

A true pain patient like myself tries hard to hide it. This is sometimes mistaken as “not really feeling that badly”. We try hard to hide our daily struggles with pain because of this exact situation. We try to hide it because nobody really understands. Try to think of a time when you were in really bad pain, then multiply the intensity by 10 times or more! Then imagine having that intensity of pain day in and day out like I mentioned above for 365 days per year, 52 weeks per year, 7 days per week and 24 hours every day without relief or without very much relief! Try next to imagine this pain is never going to go away! It’s going to be there for the rest of your life. That kind of pain is hard for anyone to imagine, but it’s nothing like a broken foot for a few months! Also, taking medication that several Dr’s all knew you were on for 12 years or more and doing exactly what you are told by your physician, your GP, does not make an “addict”.  Just because I put on make up and try my best to look as good as I am able, does not mean that I feel wonderful at all!

I feel as though I am “stuck” in a body of which I have no control. I have to go each and every day with nobody truly understanding what I go through. If I talk about it too much, then nobody wants to be around me. If I don’t talk about it, then they think it’s not there. It’s a no win situation even when I visit the Dr’s office. They want you to give them a Number of how you feel, on a scale from 1-10, with 10 being the worst pain you have ever felt.  First of all, that would be different for everyone because maybe the worst pain you’ve ever felt was an ingrown toenail (and those do hurt, by the way!)?? What if the worst pain you have ever felt was childbirth? At least you get a “prize” at the end of it and there IS and END to it! So you see that cannot work for everyone. Just like my pain is in various places throughout my body. My shoulder may be a 3 today but my lower back may be an 8! But they only want “ONE” number to describe your pain that day!!! Geesh!

I’m luckily getting some guidance from a GP that I’ve known since 1986. But he really doesn’t want me for a patient. He feels “stuck” with me because my GP left in a Hurry and I had no place to go!   I refused to go to a pain /detox Dr. who wins prizes for writing these “great articles” about how he “helps” people with pain get off of their medications. This detox Dr. gets articles in “Detroit Hourly” magazine for his “greatness”.  Well, talk to the patients because anyone can be “book smart” and write an article with precision and big words. But not every Dr. can have empathy and accept a challenge with dignity and kindness. That is what I want, a physician who will treat me with the respect that I deserve. One who will look at me and not my husband, when I bring him into my appointments with me. Lastly, I want a Physician who will listen to me and believe in me as much as I believe in myself.  It’s taken many years for me to believe in myself. But I know that even though this is awful, painful and very difficult; I can do it!  But then what next? I will always need something for pain! What do I do as I decrease my pain medicine dosage even more? The pain is increasing and my mobility is decreasing. I can now do something for an hour before I need to stop and go home to rest. Prior to this time, I could at least go out for a few hours before having to go home and rest.

Lastly, just because a pain patient can do something one day, such as go shopping for 2 hours, doesn’t mean that the next day or next week they’ll be able to repeat that. Chronic pain is such that it is just as confusing to the patient/sufferer as it is to their friends, family and physicians. It is like “hot and cold”…..one day we can do something and the next day we may not be able to do it. I may wake up tomorrow and not be able to “go out to lunch” as I had planned. Friends and even family get upset when we cancel plans. Each day is different and we never know how we will feel. I try very hard to be “normal” and chronic pain is hard to understand if you do not suffer with it. The Dr’s who are “pain” Dr’s have not suffered from it, for the most part. They don’t know what it feels like, they only know what they learned from a book and from their patients. If they are a good pain Dr., they will learn from their patients.  Remember, nobody WANTS to feel this way. Shame on the Dr. who sent me away because I wouldn’t go to the “detox” Dr. whom he wanted me to see! Shame on him for not helping someone who he’d already known, trusted and believed at one time and for 3 years! He wiped his hands of me and didn’t want to be involved with helping someone else’s “mistake”.  Just shame on him! The worst thing that you can say to a chronic pain patient  when they are taking pain meds, is to say that they have a “drug addiction”. People who do not have a history of addiction or problems with drugs, and who are living with chronic pain, like myself, do NOT WANT to take these medications or narcotics!! WE/they need them to function and get through the daily activities of living. Our Body is physiologically dependent on them and we are tolerant of them.  But a definition of “addict” is not equal to “someone in horrible chronic pain with a legitimate chronic pain disease who has been prescribed Narcotics / Opioids to help ease their pain for years and then suddenly someone decides it’s time to take them away and send them to Detox!

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I am a Health Activist


I have been a Health Activist and/or Advocate for several years now. I have a support group, that is “closed & secret” to help people in the group feel free to get out their thoughts. If someone wants to join, they just have to PM me or email me and ask. The group is called “Invisible Diseases, Especially Chronic Pain and RSD/CRPS”.  I have been the administrator and sole moderater since 2007, when I was diagnosed with RSD/CRPS. This group has over 850 people in it. We all  listen to and help eachother.  I also have fund raisers to help raise money for RSDHOPE.org and in the future I hope to help RSDSA also. I have another support group on Google+ too, but it has only about 120 people and I don’t moderate it much as it is more of an open group. It is called “Be Aware & Care”. I am a Chemo-Angel and have been since about 2005. This means that I get assigned a “buddy” who is going through Chemo therapy and I send him/her weekly notes, small gifts etc; that are uplifting and only positive. I do not expect anything in return. My last “buddy” was a 4 yr old child and my kittly “Luna” was her “Angel Kitty Luna”. I thought it would be more fun for a child to receive gifts/cards from “Angel Kitty Luna”, than an “old lady”….LOL.  She loves my Luna and so much so that I made Luna a page of her own on Facebook, if you want to stop by and visit.  It is called “Angel Kitty Luna Skye”.   Lastly, I have a website at :  http://www.freewebs.com/jewelrymkr and a Tumblr page at:  SupportInJewelry.Tumblr.com where I showcase Awareness/Support jewelry items that I’ve been making since about 2005 also.  I’ve been unable to make any or much jewelry except for “special orders” for the past 2 years or so. My pain has increased since my Physician left abruptly and nobody else wants to  prescribe pain meds anymore for the real people who truly need them.  I try my best to help others because it forces me to focus on something and someone else instead of my physical pain and the rest of it.  I wanted to inform you also that I have  a couple of uplifting pages and another group that is closed but not “secret” on Facebook.  The pages are:  “Hope For Invisible Diseases” (page), “Angel Kitty Luna Skye” (page), “Hope and Freedom From Abuse & Betrayal”(page), and “RASE For Invisible Diseases”(page AND group both).  I hope you feel welcome to visit and “Like” them and stay awhile. You may even add something of your own that is helpful.

I wanted to just share my photo’s from the newspaper a couple of years ago. It was exciting to be one of just a few advocates to get nominated for the Wego Health’s “Unsung Hero Health Activist Award”. Thank you for allowing me to share with you. A new post is being worked on right now and it is coming soon. It is going to be about Chronic Intractable Pain and pain doctors and Opioids. It is going to be discussing the difference between being “addicted” and being an “addict”. Believe me, there is a big difference.  One is being tolerant and phsiologically dependant on a drug for pain that a physician prescribes for you.  The other is being overly consumed with thoughts of and compulsive actions regarding an Opioid medication.  So…watch for that one…coming soon!