Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!
What do you think? Has justice been served?
Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!
What do you think? Has justice been served?
It is with sadness that I write this blog post today. I would never intentionally hurt anyone. 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, Leah & Bruce,
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, (due to Paul’s behaviors+), I discovered that this perception was not true. However, I decided to help shoulder the burden of guiding USPF through the trauma of the aftermath of of Paul’s mishandling of funds & more. Also to stay & help with USPF losing its founder and CEO. As time went on, shocking details of misuse of funds & other inappropriate behaviors kept adding up.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 Leah 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.
Peace & Hope,
Suzanne B. Stewart
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.
We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis. Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony. This is the true “Opioid Crisis”. But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan. She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media. She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”, came out in September 2017. In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?” The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode 2 finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.
Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.” She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.
The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities. She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey. She also wants to do whatever she can so people learn about her feature documentary.
Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis. I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.” She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel. Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?” My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families. Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to. But we are trying to fight because our very lives depend on it.
Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain. Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.
Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”. I think that it taught her and hopefully will teach others about “Invisible Illnesses”. She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”. She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community. If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue. I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide. It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.
Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:
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”
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
Do you know that according to the Institute of Medicine, there are approximately 100 million chronic pain patients in the U.S.A.? Also, 20% of children in America have chronic pain. “Chronic pain” is described as pain that has continued for longer than 3 months. Those of us who live with pain know how much it impacts our lives and the lives of our families/friends. It affects every aspect of our lives including the ability to work, sleep and go out and have social interactions and activities. Did you know also that chronic pain costs our nation an estimated 560 to 630 billion dollars annually in medical expenses, lost wages and productivity?
Well, my friends, as an Ambassador for Michigan, of the U.S. Pain Foundation, I’m here as a chronic pain patient myself to tell you that you can make a difference. As Margaret Mead, a famous anthropologist, once said, “Never Doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has”. The U.S. pain foundation which started out as one person’s dream, has turned into a mission. One which is to inform, empower and advocate on behalf of the over 90,000 members throughout the country and all those who live with chronic pain. The U.S. Pain foundation also provides education on pain management skills and constructive ways to cope with pain and find fulfillment in life.
We can find fulfillment in life and we can be “taken by the hand” of a beautiful non profit organization, such as this. They help us find that fulfillment, by providing chronic pain patients with increased awareness about the effects of chronic pain. This in turn, helps result in increase access to quality pain care and empowerment for those living in pain. So, please take our hand and join together, starting this September 1st, 2017. This is the beginning of “PAIN AWARENESS MONTH”. Instead of running through those Facebook, Twitter and Instagram messages from other pain warriors who are participating in “Pain Awareness Month”; why don’t you take our hand and join us?
Throughout the month there are a number of things that you can become involved with. We have many awareness events and projects that you can be a part of, right from the comfort of your own home. If you can not get out, then join in the awareness of chronic pain online. Post Memes, stories and even your story to help make others aware of our chronic situations. Take the negative out and add some positivity and then you will get “HOPE”. You can “Beautify in Blue”; by getting permission and then putting up ribbons and signs around your community. Another choice, if you live near something special and beautiful, such as: Mackinaw Bridge in MI, Niagara Falls in NY, or any landmark; you can get permission and ask the city to “Light Up the Landmarks” for Pain Awareness Month. Turn the lights blue on those landmarks and shout to the rooftops that “We are a part of the 100 million chronic pain patients in the USA and we want to be seen and heard”! There are also many other things that are very easy to do. Please feel free to ask me about the awareness events and fundraisers for the U.S. Pain Foundation during Pain Awareness month and/or any other time throughout the year. You can do something as easy, like I mentioned above; like posting about your pain and Pain Awareness month on Instagram, Twitter, Facebook, Google+ and more. The list and the possibilities are endless when you just try to make HOPE a verb and DO something about it.
Pain Awareness month will start on September 1st, 2017. It continues throughout the entire month of September each year. It doesn’t stop for us, after the month of September has ended. We continue to support and empower you throughout the months and years. Consider being a part of something bigger and better. Think about joining a wonderful “family” of pain warriors who all help each other and help others as well. My hero, Helen Keller, once said “Alone we can do so little; together we can do so much”. So starting with this September, let’s all join forces and let the rest of America and the world know who we are and what chronic pain is all about. We need you and who doesn’t like to be needed? (For information about PAM please contact me at: @PeopleInPainUnite or @RASEforCRPS on Twitter or my email at: RASEforCRPS@yahoo.com. You may also contact the U.S. Pain Foundation at: www.uspainfoundation.org).
We are in a group doing role playing above
Beds were brought in for people who needed to lay down awhile. That’s me with the blue blanket on the bed!! Isn’t that so thoughtful, accommodating and awesome? The US Pain Foundation did this for us!
I wanted to write something about my experiences this past weekend when my husband and I went to Connecticut. I was invited to go to a weekend seminar to learn how to be a “support group leader” and how to host an “in-person” support group for people living with chronic pain . I was a bit nervous at first because going on even a short trip is difficult for those of us who live with debilitating chronic pain on a daily basis. We worry about being in pain far from the comfort of our recliner, bed or even our own home. There are worries about taking medications or durable medical equipment on a trip or to a hotel. Then we worry about the airplane ride or the long car trip and the ensuing pain it will inevitably bring. But guess what? It is always worth the extra effort because our home, bed and recliner will be there when we return.
The U.S. Pain Foundation and their program called “Pain Connection”, hosted this two day workshop in Connecticut, not far from the U.S. Pain Foundation home office. As with everything else that I’ve ever done with or for them, I was never alone. They walked with me through each and every step of the trip and the workshop. The main thing about any trip is the pre-planning. It makes everything easier if you can call the airlines and arrange for a seat placement that gives you the most amount of comfort. You can do everything from your bed/recliner and home. All you need is your computer or a telephone. I got an employee of the airport to assist us to the gate, get me and my wheelchair onto the plane ahead of everyone else and all it took was a phone call. They needed the height and weight of my wheelchair and that was all. Everyone was very kind and cooperative. They let me take my wheelchair all the way to the door of the airplane, they took my chair and then assisted me to my seat. It was much easier to take only “carry on” luggage. This way we had nothing to “check in”. I brought my gum, headphones, music and smartphone. Everything went smoothly and all of the persons involved were accommodating. I even spoke to the staff where I had to be “patted down” because of my pacemaker. I’m not able to go through the scanner or have the wand put around my body because of my implanted medical devices. I told the staff member that I have a nerve disease and she was very cooperative and kind. She very gingerly patted me down and I was not in any discomfort. You just have to be prepared, verbal and have a kind attitude yourself.
We arrived at our hotel which was a wonderful accommodation and again everything was great! They even had a coffee machine in the lobby with my favorite and special kinds of coffee. We arrived on Friday evening and my husband went to the pool, while I sat at the pool area and rested from the day’s journey. We had a more comfortable bed than mine at home! I slept a whopping 6 hours and the most I ever get is 3 to 4 hours of sleep at home! I’m not sure if it was actually the nice bed or the fact that I was exhausted? Either way I was rested and ready for the day ahead. On Saturday we went down to a conference room and to my elation, there were several beds ready for takers; along with nice and comfortable tables and chairs. I had my wheelchair with me, but I quickly snatched up one of the beds and would have gladly shared if anyone had needed it or asked. We had introductions and proceeded to be trained to work with people who live with chronic pain and their families in a group setting.
Some of the tools that were taught included: relaxation, the “treatment tree” plan, self-compassion, meditation, self-massage and more. We learned the Psychosocial stages of chronic pain, the grief process and we had a question and answer period with discussions. We watched a couple of videos and did role playing on Sunday. We laughed and cried with each other and truly got to know our peers. I formed many new friendships during those two days. These are persons who literally live what my husband/caregiver and I both go through on a daily basis. The leaders were so wonderful and they too, laughed and cried along with us. We learned some techniques of Acupuncture and Acupressure and how to lead successful groups. One part of the weekend that especially touched my heart was when the caregivers did their presentations. These were the caregivers to the leaders of this training program. They spoke about how families are affected by chronic pain. Then we had a group discussion. Again on Sunday we learned even more about things such as: guided imagery, breathing techniques, pacing & respecting limits, how to maximize group member engagement and then we learned about flare-up relapse prevention.
At the end of the two days full of enrichment, learning and building friendships; we all received our certification for “group leader training”. We were called up individually and sat on a chair in the middle of the room. It wasn’t intimidating in the least! It was exhilarating to hear the kind words that were said about each person. They went around the room and everyone said something kind and wonderful to the person sitting in the chair. Maybe it was something they learned from them during the weekend, or it may have been something about their personality that was especially positive? Either way we laughed and cried again, together as a group and individually, personally. There were polished stones laid out on a table. Each stone had a word carved or painted on it. Some of the various words were: Courage, Hope, Love, Kindness, Healing, patience and so on. Everyone chose a stone that had a special meaning to them and that is when we sat in the “hot seat” and we were given positive feedback from the weekend.
I always felt comfortable to eat, drink or get up and move. I even wasn’t embarrassed when I fell asleep for a few moments during the comforting music and guided imagery session. When does a pain patient get to feel so relaxed and comfortable? It is when we are together with others like ourselves and feel comfortable enough to share, laugh and cry together. I know that many of us were so happy and felt very accommodated and comfortable during this workshop weekend. Even though I was “wiped out” from the day on Saturday, my husband and I did something that we had never done before! I called an “Uber” to take us out to dinner with some of the staff and other friends who were there. We had a fun time of chatter and more laughing and much sharing. We went back to the hotel and crashed after that, but it was worth it.
We arrived home but returned with many tools, more knowledge and several new friends. I now feel that I have the tools and am more confident to start and run a support group near my home in Michigan. I want to give special gratitude to the U.S. Pain foundation and their program called “Pain Connection”. I also wish to personally say “thank you” to Paul Gileno, Lori Monarca, Gwenn and Malcolm Herman and Cindy and Marty Steinberg. I encourage anyone to be more empowered and try to do things that you think you cannot do. Lastly, I would like to say that whomever wants to know what the U.S. Pain Foundation is all about, read this article again. You can visit their website and become and Ambassador and have a more fulfilling life. There is so much that you can do right from your own home. You can even use tools such as Skype and “Google hangouts” to connect with more people. I encourage you to look for a support group near your home and if there is not one available, think about trying to start one yourself. Helping just one person, reaching one person’s heart is worth its weight in gold.
I run several support groups for various Chronic Pain illnesses. This was posted in a couple of my groups by Dr. Red Lawhern, PhD. He got a note from Dr. Forrest Tenant; who is a legitimate and well known pain specialist. An M.D., Dr. Tennant is a supporter for the appropriate use of opioids. Here’s a copy of the note from Dr. Tennant to patients, caregivers and advocates for people with chronic pain:
The following is by Dr Forrest Tennant, MD, who is board certified in both pain medicine and addiction medicine. I have his permission to pass it on to pain patients and their families.
HYPERALGESIA: NO REASON TO STOP OR REDUCE OPIOIDS
Forest Tennant M.D., Dr. P.H.
Please circulate to patients and families who need guidance on this subject.
One of the excuses that some health practitioners are using to stop opioids is to claim a patient has hyperalgesia (HA). This is a most dishonest, devious, and dangerous ploy.
First, the definition of hyperalgesia is simply that a stimulus such as hitting your thumb with a hammer is more painful than usual. Second, there is no way to measure or quantify the presence of HA in a chronic pain patient who takes opioids. Practitioners who claim that a chronic pain patient has HA usually do so because they don’t like the dosage that a patient must take to relieve pain or they have a bias against opioids. Some practitioners are actually telling patients that HA is harming them, and that their pain will improve or even go away if they stop opioids!! This dishonesty and deviousness may go further. Once off opioids, the practitioner may recommend that a patient have expensive, invasive or unneeded procedures. Danger may come with abrupt cessation of opioids in a severe chronic pain patient. There may be a combined or dual result of a severe pain flare along with severe opioid withdrawal symptoms. This combined effect may result in a stroke, heart attack, psychosis, or adrenal failure. Some patients may commit suicide.
All who read this need to know that many expert pain specialists either do not believe that HA even exists or that it is irrelevant to clinical practice. In other words, if a certain dosage of opioids is effective, continue treatment with opioids. There is no reason to stop or reduce opioids just based on HA.
Any time a patient is told they have HA and should stop or reduce opioids, they and their family or advocate should ask the following questions of the prescribing practitioner:
1. What test or evaluation did you do to determine that I have HA?
2. If I do have HA, what damage is it doing? (Show me some studies!!)
3. When did I get HA? (Nothing has change in some time!)
4. I’ve heard that HA may be the result of too much neuroinflammation or hormone deficiencies? Don’t I need to be tested for these?
5. If I stop or reduce opioids and still have some pain, what are my alternatives? (Will you return me to my original opioid dosage?)
The author’s personal recommendations are: (1) If your opioids don’t seem to be as effective as they once were, get a hormone panel blood test. I’ve seen many patients boost their opioid effect by replenishing pregnenolone, testosterone, estradiol, or another hormone that has diminished.; (2) If you wish to reduce or stop your opioids, reduce your dosage about 5% a month. By slowly tapering you may be able to greatly reduce or even stop opioids.
Please inform all parties that HA is not, per se, a reason to stop or reduce opioids. More important, if you reduce or stop opioids, what is your alternative, and, if the alternative doesn’t work, what will you do?
Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge. I’m feeling both proactive and protective. I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about. While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing many lives in a negative way. Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”. He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”. Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening. I’m trying to get someone to listen to us. As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players. When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story. When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin. There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”. I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.
I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”. I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict! That is not the same thing as someone living with daily chronic pain and knowing that life will always be this way. Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available. We realize that we need to give different options a chance. But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options; then they/we need reassurance. We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!
I am in a group of people called “chronic pain patients”. We are not drug addicts! The definition of an addict, according to the Dictionary (on Definitions.com) is this: “to devote or surrender oneself to something habitually or obsessively”. I can speak for myself and the hundreds of chronic pain support group members that I mentor. We take only the medications prescribed to us by our physicians and/or Pain Management Physicians. To clarify, I will explain further the difference between the addict and the pain patient. The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly. The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor. Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking. On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly. They can’t function because they’re thinking about their next dose all day long.
I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me. It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts. She wrote about the deaths of people who have overdosed. But how many of those deaths were people who took only their prescribed dosage of pain medications? I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”. The CDC has qualifiers for their “Morbidity and Mortality weekly report. She researched the information that she was given and found that those qualifiers are as follows:
The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?” Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication. We just can’t lump medications and street drugs together, that is irresponsible. Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”, according to our own National Pain Report in November 2015. As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others. We don’t become “addicted” to our prescription pain medications. Our bodies may become tolerant or “dependent”, but we are not addicts.
There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless. They empower us and encourage us to do whatever we can do but never more than that. We have a voice and it needs to be heard. Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365. When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief. But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month that goes by. We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.
I feel that people who are doing this are doing it for the wrong reasons. People need to be educated regarding Opioids instead of being afraid of them. There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS). Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel. Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.
A not-so-crazy couple with 15 cats