Nowhere To Run



Going to the doctors office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5 year old deep down inside, more afraid of doctors than ever before. Why do they have so much power over us? Why do some use that power to make us feel inferior? Eleanor Roosevelt said “No one can makes us feel inferior without our consent”, but I feel it and I don’t remember giving anyone permission? We are living in difficult times for anyone who has debilitating, intractable chronic pain. There also is no place to “run”, no matter how big your suitcase is or how much money you have. There’s no grandparents at the other end to scoop you up and tell you that “it’s going to be OK”. Mostly, because it’s NOT OK.
Have you ever seen an action/crime movie where an innocent person was being tortured and/or thrown in jail, for something they did not do? A person being “beat up” but totally innocent? This is what is happening to the chronic pain patients in America today. I’m going to share a short story about what happened to me the other day. We always think these things only happen to “other people”. That “it won’t happen to us”. That is wrong and untrue. We live in a civilized nation, or do we? How can they treat us like this?
Here is a summary of what happens to me every 30 days. Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my upcoming appointment, I get more frequent stomach aches. I want to stay inside more and just sit in my “Lazy Boy” chair, with my blanket and with my cat cuddled up next to me. I wonder if “this will be the visit that “it” happens to me”? As the appointment time gets closer, I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. Then the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house. I cannot leave because no matter how much I talk myself out of these feelings, they won’t go away. My blood pressure, which has normally been low to normal, is very high for me at about 150/95 to 155/100. I feel sick and afraid. But I’ve never smoked anything and I have never taken any kind of medication or “drug” that was not specifically prescribed to me by a licensed physician.
The time of the appointment grows closer and I get even more distressed. Sometimes I cry and I just verbalize to my husband that “I don’t want to go”. I wonder why is life so cruel to those who are already living with agonizing pain and illness? I’m not one to feel sorry for myself. I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. He has no reason to believe anyone and he must go by what he sees in text. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.
It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30 minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”. We arrive at the pain Dr.s office. There are cameras everywhere, in the parking lot and in the office. For all I know, theres one in the restroom? I know that I left a urine sample last time, so I feel pretty calm about that not going wrong. I had not heard from them, so Im just sure that there’s no “false positives” with me. That only happens to other people, right?
We sign in at the front desk. I answer the several questions that I am asked every 30 days now. For crying out loud, what changes in 30 days? It’s just too often to put people through this, aside from the cost. My name is called and my stomach is in knots. I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”. I hear the footsteps faintly coming down the hallway and then a knock at the door. I calm my inner fears and I tell myself “Suzanne you are a good person. You’ve never done anything wrong and you follow the directions exactly. This is crazy, why are you so afraid?” I’m afraid because of the horror stories of others who are also innocent. The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue. But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab. In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.” I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had ben positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guiilty”. It doesn’t matter that these tests are many times false positives and false negatives. Nothing matters anymore. The truth doesn’t matter any longer. I was literally terrified just hearing those words come out of his mouth. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.
We had received a $265.00 bill from a lab just a few days prior. We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it? Next time there is a “false positive”,they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever? It was explained to me that no matter who I am, how exemplary of a patient I might be and no matter how long I’ve been going there with a perfect “record”. I will be treated as if it were my first visit and there are no second chances. We are perceived as “guilty, bad and lying” if the tests says it is so. Yes, there is a second test, but then you are hit with this grossly overblown bill and there’s no way to pay for it. The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means every once in awhile there can be a glitch or a mistake. That means that every once in awhile someone gets hit with this huge bill, through no fault of their own.
I am tired of people telling me that I should not be on this medication. People who are supposed to love me or at least care about me. It feels like nobody understands the predicament we are in. I take medicine that still helps to relieve my pain even though I’ve been on it for quite awhile. I have almost no side effects and I’ve tried many many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. I get the pleasure of being a grandmother. Without it, I would be in bed or in my chair 24/7. I’ve been there and done that. I don’t want to go back. I’m tired of being judged by people who don’t know me. I don’t get a “high”, and I never take more than prescribed. Why can’t I just continue to do what has worked for me? Why can’t we all? Why do we have to feel persecuted and judged? Why do we need to feel traumatized and terrorized every 30 days, to the point of feeling physically ill?
My story up to this point, ended on a positive note. My Dr. still had to send out the first test because he said that “it is the law”. I have never done anything remotely considered to be “bad” or “wrong” and definitely not “illegal”. I’m a good person who graduated college with honors. I raised my daughters mainly by myself for about 8 or 9 years. I worked full time and took care of everything and everyone who needed me. I try to be kind, thoughtful and I am always trying to think of new ways to help others. Nobody deserves to feel this way. Theres something definitely wrong with this and someone needs to fix it.

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

The “O” Word


Hello Luvs,

I have just uploaded a video to my advocacy YouTube channel. I have called it “The “O” Word (The Opioid Issue)”,  It explains a lot about Chronic pain and the issue involving Opoids for the relief of chronic pain. After a pain patient has tried a good number of treatments and they have not worked out, then a patient should be able to make the choice WITH their pain management physician, to either take Opioids or not.  This would be in order to give them some semblence of a life outside of their bed or recliner.  The video is right here, below.  My YouTube Advocacy/Awareness channel is located at: http://www.youtube.com/Suzydukettes.

I don’t want to give too much away, but here is the video:

The “O” Word- The Opioid Issue

I Cannot Do Everything, But I Can Do Something


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

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

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

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

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

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

The board, unanimously passed a resolution finding that the original HB 4601 “infringes on a doctor’s ability to care for patients by substituting the Legislature’s opinion for the opinion of individual medical professionals.” The board further advocated a balanced approach “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary.”

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

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

I Am Invisible No More!


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Hello Luvs,

I wanted to post the video that I made for Invisible Disabilities Association. I was hoping to ask you for a favor? I have entered this video in a contest, in order to spread awareness of Invisible Illnesses. Would you please be so kind as to just click on the video below and then watch the 3 minute long Video? Then right above the video, after you click on it, you’ll see the word “VOTE”! Please click on that word and that will cast your vote for me!

Thank you so very much! If you could, I’d be so obliged if you could SHARE the video on your Facebook pages and in your groups, Tweets etc. It would be really awesome to make Invisible illnesses more known! Thank you for your vote, in advance. I appreciate it so much! Ohhhh please always us the hashtag #Iaminvisiblenomore thank you !

My video “I Am Invisible No More” Is Right Here, When You Click!

http://woobox.com/yskmzt/gallery/0by3nprZkI0