Fighting For Chronic Pain Patients


This is the “Roy Green” syndicated radio show that is heard in Canada & the USA each week. I was contacted by Roy a few days ago and asked to come on the air and speak with him regarding the dire situation that chronic pain patients are living and dealing with these days. I also spoke of how I was informed that I’m losing my own ER/LA pain meds in 2 weeks. The starting point of my segment Is at 39:12 through 54:15. Please feel free to share this with our pain community. Thank you!

Suzanne Stewart on the Roy Green Show, Fighting For Chronic Pain Patients

Keeping Hope Alive is Tough!


You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now. I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive. On my WEGO Health profile, my favorite words are posted. These are words that I try to live by and a phrase that originated with me, “Hope is a verb, You have to DO something in order to have it”. Now I have to practice what I have been preaching.

I think most of you know that in March 2018, I visited my pain Dr. And he did the usual random urine test. I was told in April that it showed a positive for PCP and something else, I cant even think of right now? Probably because I have no idea what these are and did not ever take them. It ended up being a “false positive” after we were charge $300.00, because HE forgot that I was taking a migraine medication that did not show up on the MAPS. He says it shows up sometimes, not others?

My PTSD symptoms have gotten worse prior to each upcoming pain Dr. visit. He has become less respectful towards me. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

The past few appointments I have not felt that respect that I had felt in the past. My Dr. was treating me differently. He got angry if I got weepy at all and he yelled at me for crying. Something changed in him and I could see it and feel it, but I was not sure what it was or why it was happening? This week I went to my appointment on Monday, 7-9-18. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me, when he used to chit chat a bit and even smile when he told me about his children. At the end of the visit, he said this to me “so we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 yrs and taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. I’ve been doing quite well and now he was taking away something that I’ve been doing very well with. Then came the “big lie”; (*which I know is untrue because I asked my Neurologist and Cardiologist and I was told it was not true whatsoever). He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me. My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8 month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, its best not to say anything”. What the heck is that all about? We are supposed to be lambs/sheep and follow orders and jump off the cliff if told to do so, without ever asking any questions? I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

Lastly, I put myself into old “abuse mode”. It was the same as the “old days” and I put myself in another place, disassociated until we could get the hell out of that room. All I wanted to do is cry and be hysterical for a few moments with the one person who loves me and who protects me to the best of his abilities and who is my soul-mate, my husband. I heard him tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

We are now at the mercy of the government in our patient rooms. He says that the state and federal government are making him do this to me. But there is no “law” that I can find in Michigan yet, stating that all persons taking Fentanyl for chronic pain must be removed from taking it now. I’m sorry that I don’t believe that you must be “heavy person” in order for the Fentanyl to work, because I was pretty much anorexic when I started it and it’s always worked for my pain. I have never had a “high” or any feelings except some relief from the pain of the several high pain illnesses that I live with and have lived with for many years. He also told me that “only those who have cancer are allowed to have these fentanyl patches now”. There is no evidence to prove that cancer pain is any worse than the pain that many of the chronic pain patients have to endure. I know there is a NORD website quote or a quote from the AMA, regarding this but I’m too sick right now to try and find it for you, I apologize. It’s easy to give advice, hope and love to people going through this, but when it is YOU who is going through it, all the love, advice and hope won’t make it better.

The same day that this happened, I awoke at 4:00 am with a feeling like someone was pressing on my left eye. When I opened my eyes, I could not see out of my left eye at all. It was totally pitch black. After a few minutes of screaming hysterically and my husband rushing to my side, I started to see patches of light in a dark mass. Then patches of the living room came into focus. After about 5-10 minutes, I could see again but not as sharp as usual with my glasses on. I went to sleep and in the morning I had a dull ache in my left eye and went to the hospital’s eye clinic that day. The Dr. Said that I had a “mini stroke” or “TIA of the eye”. My blood pressure had been high at the pain Dr. Appointment and my heart rate was 100 bpm before he even came into the room to tell me the news. He told me it was probably from stress and nothing they could do for me after all of the special testing that they did, they sent me home. I visited my heart specialist the next day and filled him in. He concurred with the eye clinic and said it could even have been an Ocular Migraine, but either/or both are from stress and can be a dangerous precursor to a stroke. I had a CVA or stroke in 2006, so I’ve been there and done that already. Today, we are like lambs going off to slaughter and nobody cares if we live or die. As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual? Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic? I guess only time will tell and all I can do is try to “keep hope alive”.

Becoming Incurable Crowdfunding Campaign


Please watch this short video and see how this film producer is bringing awareness of Chronic pain and Chronic illnesses to the big screen!

If you prefer to visit my advocacy YouTube Channel to watch this, you can visit: WWW.YouTube.Com/Suzydukettes….

BUT my newest Youtube video is right here for you to watch -and it’s only about 4 minutes Long: I hope you will enjoy, learn & help in any way possible with the crowdfunding campaign, at: http://www.seedandspark.com/fund/becomingincurable

Here is a very short 4 minute video: (Thank you for Watching):

Becoming Incurable Crowdfunding Video

Human Rights Group Addresses Opioid Issue


 

I was uplifted to see that someone is finally standing up for the rights of 100 million chronic pain patients in these United States of America. We’ve been waiting for a group, a person, a physician or anyone to stand of for this group of people who are mostly too busy worrying about Dr. appointments and just carrying out daily tasks of living to advocate for themselves . Those who deal with daily pain are often too weak to form a huge protest, fight with signs and stand on Capitol Hill for days or hours at a time. Many of us have written letters and tried to encourage people to respond to the FDA docket. Many people have done what they could do to help, while living with illness, chronic pain and debilitating fatigue.

This past week I was so happy to find that a Human Rights group called “Human Rights Watch” has taken an interest in our cause. Someone has finally noticed that ignoring a large group of citizens who live with chronic pain and who are being largely untreated or under-treated, is inhumane! This Human rights group has reported on other forms of torture throughout the third world countries as well. They are based in New York and at last, they are looking towards helping the people at “home”, in the USA. They were doing research on cancer patients and were shocked to find that so many had lost their pain control/relief. This is considered torture in many other countries. Before this Opioid issue began, I never would have believed that the USA would want to torture their most fragile citizens? Hopefully this advocacy group will truly help this cause. They could begin by reversing the effects of the CDC guidelines and by helping to keep the government (and politics) out of practicing medicine. In my opinion, it feels as though some legislators who may want to be re-elected, make a name for themselves or get news media attention have been “using” the chronic pain community for their own gains. One example of politics mixing with medicine is the “Lifeboat tax”. A group of Senators want patients who are taking Opioids, to pay for addiction treatments centers by forcing a tax of .01 cent per milligram of Opioids prescribed daily. But the majority of people who are legitimately prescribed Opioids are not “addicted”. This is wrong and someone has to take a stand, be brave and help those who truly cannot always fight for themselves. Living with untreated and under-treated chronic pain is definitely a human rights issue because people can and do die from it! They pass away because increased amounts of pain can cause very high blood pressure, high glucose level, stroke and a heart attack. But it’s the “living” without pain relief that is the torturous part.

Honestly, removing Opioids from the bigger picture of high pain illnesses, is inhumane. I hope this Human Rights Watch group will help the chronic pain community, curb the fear in our physicians and stop the Government from creeping into our patient/Dr. Relationship and exam room. This group found that nobody has been paying attention to those suffering because their physicians “jumped ship” and abandoned them. They found that the testimonies given by some patients who have lost access to appropriate medications for pain relief, “were similar to those who were victims of police torture”( https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients. We needed someone to be brave and step up to help our community.

If you want to help the chronic pain community and/or if you have a story of your own, please write to this group? Share your story in just a few lines. They have asked for people to send these stories to: Human Rights Watch, email researcher Laura Mills at millsl@hrw.org…They also have a Facebook page: https://www.facebook.com/HumanRightsWatch and they have a Twitter feed @HumanRightsWatch. The more true stories about increased pain and loss of treatment that can be sent to them, the better. The more real human faces that they can connect with this Cause, the more it will help to stop the continued torture of Americans who rely on Opioid therapy for relief of chronic pain Illnesses.

Give Pain A Voice


By: Suzanne Stewart

(With excerpts from Tina Petrova)

Tina Petrova is a motivational speaker and an award winning filmmaker. She is also a person who lives with chronic pain and knows what it feels like. Along with many others, she agrees that pain is being under-treated in both America and in Canada.

She and film partner Eugene Weis are trying to bring awareness of the dramatic loss in pain-care through their new Documentary film “Pandemic of Denial. “ It is their hope that this film will help educate general society about what it is to live with a life long diagnoses of Chronic Pain.

Tina shared with me “there isn’t any real “guide book” to give direction as to “what to do next,”when living with daily chronic pain”. The film follows the lives of families torn apart by suicides due to chronic pain, those who contemplated it during filming and those left behind to grieve.

Her pain physician in Canada believes intractable pain has to do with pain being an “outward sign” of a damaged or traumatized “pain system”. He believes that humans have a “pain system” just like the other systems in the human body; for example: lymphatic, cardiovascular etc. In his views, the chronic pain patients struggle to makes sense of their lives after being productive and then suddenly not being able to do what they once could do.

Tina shared with me , that she felt if a patient cannot make sense of such a dramatic life altering event; then how are our loved ones and colleagues supposed to do this?

We all agree that chronic pain can end dreams and even lives; especially with medical complications and now today, with the rise in suicides due to under-treated and untreated chronic pain. This film tries to help us all make sense of what is happening to one in four North Americans who live with daily pain.

The filmmakers have said that “this disease now affects more people than cancer, heart disease and diabetes combined… It is no small disease, ”which is the reason for the title of their new film, “Pandemic of Denial”. There can be article after article to read about chronic pain and how it is affecting people even more so now with the “War on Drugs”. But when you turn the channel and a compelling film, with interesting footage, comes to life on your Television screen; you are more likely to become engaged with the story that is being told. We are drawn in by the images, voices, music and drama.

This film focuses on the main themes of “abandoned chronic pain patients, pediatric pain and the collateral damage of suicides due to under or untreated chronic pain.” The Filmmakers feel that while “addiction and overdose are important issues to tackle, Chronic pain is equally serious and important.”

This writer agrees that addiction is also important, but these are two very different illnesses being “lumped together” as one. While the addicts are being given clean needles at a free clinic set up in several cities; the chronic pain patients are being turned away by their Physicians, Pharmacists and lawmakers; to fend for themselves and live with horrendous daily pain.

Addiction is being talked about and it is a serious disease as well. But these abandoned chronic pain patients , the tortured existence of the lives they must now live, are not being discussed nearly enough. The film explores how these people could once work outside the home, even part time. They were raising a family and housekeeping. But now pain patients are left to be bed-ridden in torturous pain with no relief and no end in sight.

The film “Pandemic of Denial” also addresses the current hostile regulatory environment towards our medical professionals. It shows how the pendulum has swung much too far the one way; while marginalizing and making outcasts of one group of human beings. In this respect, they are talking about long term chronic pain patients and putting them in one small group, with a “one size fits all” mentality.

It also sheds light on physicians who have been also living with many losses; such as their practices, livelihoods and even their careers at times.

Some of them losing all of this and being “attacked” while still try to uphold their Hippocratic oath and continuing to treat those who live with the tortures of under and untreated daily chronic pain.

Without this kind of education, discussions and strategies on how to face this health crisis that we are already living in- we are going to be facing new hardships with a population that is ever growing and aging. Filmmakers like Tina and Eugene are trying to educate the public on this “Pandemic of Denial”.

NOTE: Tina and Eugene hope to have the film released widely in 2018. At this moment, they are “still seeking Pain organizations, Broadcasters and Distributors who would like to partner with them to reach the maximum audience for the biggest impact.” They are also compiling a list of interested persons who would like to co-host screenings in their local communities. For regular updates you can follow their official Facebook Film page, at: http://www.facebook.com/pandemicofdenialmovie. You may contact them at: pandemicofdenial@gmail.com

Inhumane Treatment Of Pain Patients In USA


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

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

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

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

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

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

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

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

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

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

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