Why I Resigned From USPF


Hello Luvs,

It is with sadness that I write this blog post today. I would never intentionally hurt anyone. Therefore, any part of the following letter, that could in any way divulge information which I’m not at liberty to share; I have put “X’s” in the place of the words I had written. But I wanted my followers/friends in the pain community to know that this was the most difficult thing that I’ve ever had to do. I loved doing this volunteer work for USPF. They always told me that we were a “family”. Yet, the very day that I lost my Long acting/Extended release pain medication, I opened an email that was just the opposite of everything I thought we stood for. Since that email, I have contemplated resigning, but did not want to “hurt” anyone or do anything to leave them without enough board members etc. But from that day on, things just went down hill. Next, I saw a trailer for a movie that stars actress Karen Duffy and our Interim CEO, called “Balancing the Pain Scale”, that I found out has been in production for 2-3 years. As a Board member, I knew nothing about this movie until someone else alerted me. I went to the trailer and was saddened when I saw the words get “beyond the pill bottle” as I was losing the one thing that had given me some semblance of a life; and so are so many of you.

Lastly, I must add that in the past, I was sent copies of kind emails that pain patients would send in about me. I was also sent emails about patients who needed my help. I never received any emails/letters such as these since becoming a Board member. Not until a disgruntled pain patient who was removed from one of my groups for being disrespectful and unkind sent the interim CEO an email. This person spelled my name incorrectly as “Susan Stuart”, she obviously does not know me and did not know me at all. I felt belittled and reprimanded by being sent the code of ethics. Especially when the issues had nothing to do with USPF and I did not use my role in any conversations with that person. I did not receive a personal phone call, nor did anyone request any information or clarification regarding the absurd complaint; after my years of loyalty to USPF. Therefore, you can read the end result in my recent letter to the Board members below:

Dear Nicole, Wendy, Ellen, (XXX & XXXX,(*2 attorneys)

When I was initially asked to join the Board of Directors of the USPF, I was pleased and excited to be joining a group that I feel is  doing wonderful things and representing the interests of the pain community.

Very quickly, (XXXXXXXXX) XXXXXXXXXXXXXXXXX However, I decided to help shoulder the burden of guiding USPF through the trauma of the aftermath of XXXXX & more. Also to stay & help with USPF losing its founder and CEO. As time went on, XXXXXXXXXXXXXX kept adding up. I decided that it was my duty to stick by Nicole  & the other Board members & our legal team, to help clean up this mess & help to guide US Pain Foundation in the right direction.

I have become increasingly frustrated because everything that was promised to me upon becoming a Board member has not happened. I was told that I could represent US pain foundation at Pain week in Las Vegas 2018. I was also told that I would be put on an advisory board and be given a program of my own to run and see through to the end. I have been told repeatedly that as a Board member I cannot officially run any programs, but others do. I feel that those things I’m most passionate about are marginalized. I feel that somehow I was inadvertently sought out & appointed to the Board, because somehow, some person(s) thought that I would just agree and not ever express my own voice and opinions. But I do have opinions and a voice. I’m sad that as a board member I don’t know who any of our donors are and I didn’t find out about the movie that’s been in production for three years, I was told? There’s so many things I don’t know but then XXXX told me that “there’s no one higher than the board”? It’s a bit confusing in all honesty. I feel “kept in the dark” about many things.

One big reason or probably the that I feel the need to resign from the board of directors of the US Pain foundation starting immediately, is due to the lack of  insurance for Board members & support group members. I don’t feel “safe” being involved with voting on big decisions yet being “left in the dark” much of the time. I don’t really know where money is going or where n it comes from in all  honesty. All the things that I used to love I’m not able to do anymore because “I am a board member“.

Last of all & sadly, I received an email today with a copy of the code of ethics from Nicole. A disgruntled pain patient from Canada, sent her note full of horrible lies & accusations. I was not consulted privately via a phone call or even given the benefit of the doubt. I have never had any trouble with not one person since I joined this or any organizations. I don’t speak or claim to speak for the USPF in any of my groups that I run. I only give facts with links to back up what I say as chronic pain patient.

For all of the above reasons and due to the fact that I don’t feel respected, I must tender my resignation from the Board of Directors  of the US Pain Foundation immediately.

Sadly,

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

Recipient of USPF’s Pain Ambassador of the Year Award‘16, Mentor & Social Media Assistant RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, patient advocate for Deaf/HoH

“Out of suffering have emerged the most massive characters are seared with scars” ~Khalil Gibran~

Thank you for taking the time to let me share with you. I feel a deep sadness and broken at this time.

Pain, Politics, Suboxone & Bupenorphrine


Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.

Pain, politics & Suboxone/Bupenorphrine

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