Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

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

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.”

We ARE In The Room



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

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

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

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

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

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

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

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

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

Excerpts taken from DetroitNews.com

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

Pain Wars


September is Pain Awareness Month – and people should be aware of what chronic pain patients go through.

To read the media, you’d think we are pill-popping complainers. We aren’t addicts, and it’s definitely not all in our head. We are real people living every day with high chronic pain illnesses. We do whatever 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 National Survey on Drug Use and Health, has done studies that say “75% of all opioid misuse starts with people using medication that wasn’t prescribed for them” but obtained from a friend, family member or dealer”. ? As Maia Szalavitz wrote in the Scientific American, “Do you know that new addictions are uncommon among people who take opioids for pain in general All of this means that steps to limit prescribing opioids for chronic pain run a great risk of harming pain patients without doing much to stop addiction.”

We have seen our lives change in the last couple of years – and not for the better. There are things that are happening around us that we feel no control over. Our feelings are correct.

The people who use opioids are under attack and the lead attack dog is Dr. Andrew Kolodny. I read an article where he says that Tylenol essentially works to combat pain as well as prescription pain meds.

“And medications that can be just as effective as, or even more effective than opioids are Tylenol and Advil”. He says that these two OTC medications “work differently, so it’s safe to take them together.” He also states in this same article that “They really are safer than opioids, and we sometimes forget how helpful they can be”. In another article, “Kolodny states “many Americans are truly convinced that Opioids are helping them”. They can’t get out of bed without them”.

One would surmise, after reading several of these articles, that Kolodny thinks that we as pain patients should just accept the pain as if it is just a nuisance. If it were as easy as taking a Tylenol, (which on the bottle it actually states that it’s for “minor aches and pains”); there’d be no rising suicide rates within the pain community.

In 2015, the New England Journal of Medicine published a commentary in which two physicians, Dr. Jane Ballentyne and Dr. Mark D. Sullivan argued their position on chronic pain and acceptance. Our own National Pain Report published an article on November 29, 2015, “Accepting Pain More Important Than Reducing Pain Intensity Because Opioids Are Harmful, Docs Write in NEJM Commentary”. The first line of the article is “People suffering in chronic pain need to learn to accept it because achieving a balance between the benefits and potential harms of opioids has become a matter of national importance. Dr. Bellantyne, the president of PROP (Physicians for Responsible Opioid Prescribing), says that “patients should pursue coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity. Dr.’s Bellantyne & Sullivan (Dr. Sullivan is the Executive Director of Collaborative Opioid Prescribing Education (COPE), stated that the patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substance use or other mental health conditions. Instead of opioids, these doctors say that an interdisciplinary and multimodal treatment coupled with coping and acceptance strategies are critical. In addition, they conclude that a willingness to accept pain and engagement in life activities despite pain, may reduce suffering and disability without necessarily reducing pain intensity. The two Dr’s also said that “patients should not focus on reducing the intensity of their pain, but their emotional reactions to it” (NEJM 2015 Commentary). I’m thinking that maybe all of those who, in my opinion, feel that we just need to accept and cope better, need to take a “pain challenge”.

Maybe they should volunteer to 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?

Kolodny and his minions appear to 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.”

Dr. Kolodny this is 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 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”. 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.

As pain patients, we simply must fight back. The people at PROP have grabbed the initiative and turned concerns about opioid addictions into an attack on millions of chronic pain patients.

It must be pointed that people who own drug treatment facilities are benefiting from Dr. Kolodny’s efforts at demonizing the pain patient.

In the meantime, state agencies, federal bureaucracies and others simply stay silent on what will happen to pain patients if opioids go away.

We cannot allow that to happen!

 **The views and research in this article are solely my own and may not necessarily be the views of the U.S. Pain Foundation. 

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Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain & RSD/CRPS.  I’m also a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595