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.

With Gratitude From A Pain Ambassador


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Hello Luvs,

I have an exciting story to tell you. So here we go:

As I sat in my “Lazy Boy”chair with a pillow under my knees and a soft blanket over my body, I flipped through my smartphone. I was checking my email on a cold Winter’s night and suddenly I was filled with a feeling of friendship and a special kind of love and appreciation. I received an email stating that I was “nominated by a group of my peers, for the U.S. Pain Foundation’s 2016, Joselynn Badman, Pain Ambassador of the Year Award”! I was surprised, happy and filled with a feeling of being appreciated. No matter if I win or not, I thought; how nice was it to be nominated by my peers.

I don’t participate in competitions or contests where I have to ask people to vote for me. I had at one time done that, in the beginning; several years ago.  But it didn’t give me a good feeling inside. It felt like a popularity contest. It felt as though others might think that I was doing good things in order to get something.  This was a nomination that i had known nothing about and didn’t ask anyone for anything. It was awesome to be nominated.

I filled out the questionnaire that I received from the U.S. Pain Foundation and waited for the results to be announced in the New Year of 2017. Then one day in January, I opened up an email message from my dear friend, Ellen Lennox-Smith; in which she was congratulating me on “winning the Joselynn Badman Ambassador of the Year Award” for 2016.  I had no idea and I got so excited that I think I would have jumped up and down if I could have! My husband was sitting next to me and I told him about it. He was so happy and then we furiously looked to find out more information. I hadn’t read my earlier email yet and there inside of an email from earlier in the day, was the U.S. Pain Foundation’s Monthly Newsletter. I opened it up and the first item on it, was a photo of me holding my “special tribute” from the Governor and a House Rep. in Michigan. Then I saw the words, “2016 Ambassador of the Year:  Suzanne Stewart”.  I looked to my earlier emails for that day, and there was a beautiful note from Lori Monarca, the Executive Office Director of U.S.Pain Foundation.  It reads ” Congratulations to  you Suzanne on your nomination and honor for the Ambassador of the Year Award!!  What a great honor to have you win this as you have put so much time and hard efforts in such an amazing way throughout the community during the year!  Your determination and dedication is unbelievable and you are so worthy of this award. Thank you so very much for being a part of our U.S. Pain Family!” I proceeded to get beautiful and loving notes, one after another from these persons who I call my U.S. Pain “family”.

I later got emails from Lori and from Paul Gileno, the President of the U.S. Pain Foundation.  Paul congratulated me and told me that he was going to fly all the way from his home in CT. to my home in Michigan, to give me my Award in person!  I was so thrilled and couldn’t and cannot even believe the love and kindness shown to me by this pain family.  This is the U.S. Pain Foundation, my “family” that is made up of many other persons who also live with pain issues.  They strive to advocate and try to always help others. A family of pain patients helping other pain patients.

If you know anything about my life, you will know that things had never been easy growing up. Life just kept getting harder and more painful. Bad things kept happening to me, one after another.  I’ve never won anything and I never even thought about it.  Mostly because I’d always thought that “those kinds of things happen to other people”.  I’ve continued onward to be the best person that I can be. I try to think of others and treat people how I wish to be treated. I’ve made my fair share of mistakes and I’ve had days when I didn’t behave or speak in a manner that I would prefer. But I get up each day and keep trying to move forward in a positive manner; to the best of my ability.

As time went on, there were emails exchanged and plans were made for Paul to come to my home and present me with the Award. I was so excited and then nervous to make sure that I made a good impression, of course. But then again, I’m not sure why I was nervous? I had spent several days “hanging out” with Paul and everyone from U.S. Pain, last Summer at the Pain Summit!  We ate lobster together and even wore those little bibs ..LOL.!  The day arrived and it was Thursday, February 2, 2017.  I think that I changed my outfit about ten times that day.  I didn’t want to be too dressed up or not dressed up enough. I wanted to be dressed appropriately but what is appropriate, to wear for receiving an award?  We were going to go out for dinner and my family and friends were invited. It was all very exciting and I think I emailed Lori more than a few times within that 24 hour period, asking many questions. I even asked if I should wear my U.S. Pain Foundation, collared shirt, with their Logo on it. She was so kind and told me to just be comfortable.

I had nothing to fear, because once I opened up the door and saw Paul standing there; all of my nervousness disappeared. I only felt calm, happy, excited and appreciated. He is one of the most kind men I’ve met in my lifetime.  He came into our home and my husband and I chatted, laughed and joked with him for quite awhile. I felt very comfortable  and then he gave me the most beautiful crystal award. I’ve never seen anything so beautiful and with such wonderful, kind words engraved on it, too. It says, “U.S. Pain Foundation” (and their Logo)…then it says: “AMBASSADOR OF THE YEAR 2016–presented to SUZANNE STEWART, In Recognition for your Outstanding & Dedicated Services to the Pain Community”….I was in awe, my jaw dropped and my heart was beating quite fast. I feel so honored and humbled to receive such a beautiful award with words on it that are so meaningful.

I am quite humbled by this Award and by the entire experience.  I’ve never expected anything for what I do. I love people and helping persons with chronic pain illnesses, like myself. I simply do what I do because it honestly helps me to stay positive and gives me more of a “purpose”. Keeping other pain patients hopeful, positive and sharing information with them via my writing and support groups etc.; makes me feel happier. Like I always say “HOPE is a Verb. You must DO something in order to keep hopeful and positive”.  Helping  the U.S. Pain Foundation by holding Awareness events, being an Advocate and fundraising is another way that I get to help others living with Chronic Pain. It’s just in my blood because before I was disabled by chronic pain, I was an Interpreter for the Deaf. I worked with Deaf children doing speech, auditory training and taught American Sign Language. These days aside from being a chronic pain patient, ironically I have two hearing aids. I have hearing and vision issues since a car accident in 2002 left me with many health issues, several chronic pain illnesses and a Traumatic Brain Injury. But I’m always happiest when doing something for others.

A group of my peers anonymously nominated me for this award and the U.S. Pain Foundation gave it to me. To my peers,  I say “Thank you so much for the nomination. I have made some wonderful lifelong friendships by being an Ambassador for the U.S. Pain Foundation.  I’d like to reiterate that I feel humbled and so honored to have been nominated for and to receive this special award.  But U.S. Pain Foundation are the ones who deserve something wonderful for all that they do for persons living with daily chronic pain. They go “to bat” for all of us when they visit the state and federal legislators. They not only fight for our rights but they teach us how to fight for ourselves. There are:  conferences, webinars, Twitter chats, Social media days for sending out love and Information regarding rare diseases, Invisible illnesses and more!  They hold the annual Pain Summit to educate us more about ways to help ourselves. One of the main things U.S. Pain likes to teach us is to “take care of ourselves first”.  I really want to reiterate my gratitude for Paul coming all the way to our home in Michigan, to give my award in person and in front of my family and best friends. With that gratitude I also want to add the wonderful dinner and conversations that we shared. A chronic pain patient himself, Paul Gileno, flew several hundred miles to personally give me a beautiful, meaningful experience along with a lovely award. Again, I say “Thank You  very much from the bottom of my heart. I only hope that I can follow Joselynn Badman’s example of a true Pain Ambassador and Pain Warrior. I will continue to learn, advocate, share awareness and speak about HOPE for persons living with chronic pain”.

The Opioid Conundrum 


 


Hello Luvs,

In light of this 2016 “Pain Awareness Month” and with what happened so recently to my friend, fellow pain warrior and fellow U.S. Pain Foundation Ambassador; I feel the urge to tell a story. It’s actually two stories, hers &  mine, but they are  within the same idea and fit in this article.

So our own dear Emily was out of town doing some advocacy work and ran out of her pain medication! She takes a synthetic opioid “Tramadol”. Her Dr nor pharmacy would help her as she was miles away in so much pain that she could not drive! She tried to call in and ask if she could just “get a few meds to get her through until she returned home”. Again, the answer was “No”! She was crying and almost hysterical calling around to different places, asking for help. She knows, she said “what she must’ve sounded like” to those on the other end of the telephone! But just like me, Emily never wanted these medications! Like me, she was reluctant to start them because she never wanted to be dependent on the meds! I went through that same dilemma for 3 years, until the PMD had his pain Psychologist, talk me into it and told me “not to ever be afraid” and to “trust them”! They even tested my psychological profile, which proved that “I don’t have an addictive personality “!

I have been through this similar situation once on a trip and then again at the end of my journey with one type of pain medication.

My family and I were returning home from AZ during our February break vacation. It was about 2009 & many planes were not leaving on time or at all! I had my wheelchair, which had already been boarded onto the airplane. I was prescribed Fentanyl “lollipops” for breakthrough pain and only brought enough for the trip. Suddenly on a loud speaker, it was announced that our plane could be delayed until Wednesday or Thursday! This was Sunday at noon! Let alone the fact that my husband is a teacher and had to return to work that next day, Monday! I was frantic, afraid, hysterical and worried all in one big thought pattern!! My wheelchair was already gone onto the plane and I could be in pain for those next 3 or 4 days! I’d already lived through a heart attack and a stroke /CVA ! I would go through withdrawals! I’d feel horribly ill and possibly suffer seizures or subsequent stroke!!??? I was so afraid and finally relieved when at the last minute they told us to board the plane quickly “because the pilot & staff had to be up in the air within 10 minutes or they’d be grounded due to too many logged working hours”!! We made it home without a trauma, but I knew in my heart that I absolutely despised being “married” to these medications!!

I relented and started taking the Opioids after 3 yrs of epidural, injections, PT/OT (for 8 yrs total), biofeedback & more! I was convinced to take them and told “not to fear”! 

In 2014, I got a letter from our medical insurance company, stating that I “had to have a pain management physician agree with my General physicians treatment plan” or they’d stop paying for my medications altogether!  The very next day I had an appointment with my GP. (*side note:  after 3 + years of the misc treatments , including pain meds, my pain managemnt Dr. told me that due to my Combined immune deficiency disease, I was no longer a candidate for the Spinal Cord Stimulator or the Intrathecal Pain pump! He told me that he was “looked at under a microscope by the Federal govt.. Therefore he was “passing me over to my GP” for medications only. He said he’d consult whenever needed for ideas etc.)

I went to my scheduled appointment with my GP of 13 -14 years, the next day. I spent the entire appointment crying, while the Dr. I’d entrusted with my medical care for all of those years, blankly stared at me! He  only muttered the words “I’m leaving, today’s my last day. I want to spend more time with my kids so I’m going to work at an Urgent care!” First of all, that was very “fishy” from the start! When he became a Dr., married and later had 2 kids; he knew what he’d signed up for! 

I left and had to pay a $30 co-pay to cry for 40 minutes! Most of that time was with the M.A. Consoling me as she reaffirmed that “nothing would change”! That Dr., his nurse & his MA, told me that “the other Dr. in that practice would take over my care & nothing would change”! My ex-Dr also told me that he’d “personally speak to my old pain Dr. & get him to sign the papers for the insurance co. Not to fear”! Secondly, he said that he’d forward my treatment plan and records to that PMD, and all would be fine, and everything would stay the same!

A few weeks later, I went to see my old pain Dr and he told me that he knew that “my pain was real and that I have multiple real and high pain issues”! But that I was to go to a “treatment center “! Then afterwards I could possibly see him again. But only after I went to his “friend”! He next explained to my husband and me, that “it wasn’t me; but he wanted no part of that other Dr.’s mess!”(my old GP). He explained that my old GP had been investigated by the Feds and had to go work at an Urgent care because he was fired from that practice  & unable to write “for pain meds”any longer! I was in tears crying and begging him to take me back! I cried and through my tears, I explained that “I had never even smoked cigarettes, did never do any kind of drugs and had not drank alcohol!” I promised him that “I was strong & I could get down off of the Fentanyl lollipops all by myself, with my husbands love and support! I made an appointment with him for 2-3 weeks later and I promised him that I’d wean down by myself. He allowed me to make the appointment! 

I returned to that PMD’s office 2-3 weeks later and down off of the Fentanyl lollipops by about 70%! He had a young 17 yr. old office girl come to tell me that “he still won’t see me unless or until I see his friend, the addiction specialist” (I researched & later found out this info.)! I cried and begged for help and I was afraid! 

I visited at least 5 Pain Management physicians! All of them looked at me like either  I was a “Lepar” or my case was too difficult and they did not want to bother ! Time was drawing near when I’d be totally out of those lollipops for good. Finally, the partner, actually the owner of the GP’s practice,(who’s known me and my family since the 1980’s), told me that I’d proven to him that I could go down on my own and he’d “take me on only if I was 100% off of the lollipops AND the oral meds &/or patches that I’d been prescribed”!  I promised that I could do it. I was terrified because no one had my best interest in their heart or mind! I had no way for future pain relief and the nation was going berserk over pain management Opioids!

What happened to this nation? Why am I suddenly categorized and scrutinized? Some movie stars and magazine reporters family members had died from over dosages; therefore now I’m an “addict”!?? There’s a big difference people!!! There’s a huge personality profile difference between an addict and someone who is dependent on Opioids for several nerve pain diseases and high pain diagnosed illnesses! An “addict” craves their “fix”! They live to take  medications, whereas, I take my medications to live! The addict gets a “high” from the Narcotics or Opioids.  I wouldn’t take them if they did not relieve my high amount of nerve pain due to RSD/CRPS and other pain illnesses from A to Z!

 I did finally find a good, kind and respectful Pain management physician. He did tell me that I had to discontinue the Fentanyl lollipops if I wanted him to be my Dr. He told me to take my last one on the eve of July 12, 2015. He gave me different Opioids and he was pleased that I’d gone down by myself, to 1/2 of the amount of Fentanyl patch than what Id been on under that first GP’s care.

I took my last Fentanyl lollipop on July 12, 2015. I had to go through withdrawals even though I’d decreased the lollipops by 90%! It was a horrible, awful and painful experience that I’d never wish on my worst enemy! I needed something for my blood pressure spikes! The nausea and vomiting too! I needed meds for calming me and I just needed time to get off of them 100%! I was in pain and miserable for a good 3 weeks, then down just a notch for 3 more. It’s was scary for my husband and a nightmare for me. I thank God that I’m a very strong willed person. I did it and I came out the other side! I NEVER want to go through that again!

I never want to be dismissed and sent to an opioid treatment center because….. I did it myself! I certainly didn’t want that following me around in my medical records for the rest of my life; when I never have never been and never will be an addict!! Yes, I’m still taking an oral Opioid and 1/2 of the amount of Fentanyl patch that Id been on under that GP’s care! 

I thought he cared about me as a long term patient! I thought he was kind and that he was the best Dr ever, because he “listened” to me! Well, do you know what? That’s all he did! He listened to me & then he wrote prescriptions and stared off into space with a kind look now & again. He never tried to help me by physically “doing” something for me–except lifting a pen!  He knew how much medication I was on! He knew it was a dangerously high amount of Opiods for someone like me; No…for anyone!!  He was not doing me any favors and he was digging me an early grave! He  didn’t care at all for my husband, daughters & granddaughters; my family or my life.

What happened when my ex-GP got in trouble and left, was a blessing in disguise. Yes, I had to go through a lot to get where I am today! I’m thankful that I have God in my life and that I’m a strong person. I thank God that I had my husband there by my side to help me through it all! I also thank God that I am here today and that I can tell my story. I only pray that my writing &  my story will help someone else in the future.

It’s because of Doctors like my ex- GP, Dr Bullach, who didn’t truly care about curing or attempting to fix medical problems and/or pain; but who only wrote prescriptions. Also then due to the actions of some celebrities like Prince, Michael Jackson and the others that abused medicines for pain; that we are in this situation today. Also the “regular non celebrity people” that abuse, modify & sell these opiods.  It is all of them who’ve ruined it for all of us. We are the faces of the people who are dedicated to getting well and trying to live some semblance of a life. All the while we are also struggling with the management of our high pain illnesses. We fight against labels and against those physicians involved in the group called “PROP (Physicians for Responsible Opioid Prescribing)”, and others in the medical profession who give us these labels!

Lastly, I need to say one more thing while Im on my “soapbox”. If someone who you loved died from an overdose, I send you my most sincere condolences. But because of your anger, loss and fear; please don’t take it out on the people who are diligent in taking these medications responsibly?! Please don’t pull the rug out from under my life, our lives because you are mourning. Maybe you feel that you must right a wrong!  Please everyone, do not put all of us into the same category as those who abuse illegal substances! Most importantly, if you are in a position of being a reporter or news writer or Television newscaster, please don’t abuse your privileges by using your job as a stage for fighting against your own personal demons!

-References: Emily’s story from U.S. Pain Foundation website at: USPainFoundation.org (originally from Rep-ap.com article: “Side effect of drug fight means some are left to suffer”)

-Feature photo is originally from: USPainFoundation.org


Canton woman is a pain warrior


Joanne Maliszewski, jhometownlife.com 5:31 p.m. EDT September 9, 2016

Suzanne Stewart of Canton lives in pain – all of the time. And she knows plenty of others who share a similar lifestyle.

“It’s up there with cancer, childbirth and amputation of a finger without anesthesia,” said Stewart who suffers from a nerve or Neuro-autoimmune disease (RSD/CRPS). She also lives with: Chiari, R.A., O.A., Degenerative Disc Disease, Dysautonomia/POTS, Polyneuropathy in Collagen a Vascular Disease (= to EDS type 4,Vascular) and other issues.

As an ambassador for the U.S. Pain Foundation, Stewart – who attended an educational retreat in August – has a host of events and displays this month in Canton to spread awareness of living in chronic pain. The U.S. Pain Foundation serves as advocates for pain management through a variety of methods, including medicines.

Stewart’s life of pain began following an auto accident in 2002, which led to eight surgeries. She has since had a pacemaker installed, has had a stroke and heart attack all by her current 54 years of age. “One in three Americans lives in chronic pain,” Stewart said.

Suzanne Stewart and her husband, Craig, showing the
Suzanne Stewart and her husband, Craig, showing the display for awareness of chronic pain. (Photo: Submitted)
As a result of the auto accident, Stewart suffered nerve damage – a cause of much of her continuing pain. At times she is in a wheelchair, other times she uses a walker or a cane. She suffers continual swelling on her left side and has lesions from one of the autoimmune diseases.

As society fights against some types of prescriptions, Stewart wants the public to know that those medicines are necessary for her and others with chronic pain, to live their lives. She also wants the public to know that while no one can see her chronic pain, it’s there and it is very real. Offering an example, Stewart said she has a handicapped permit for her car. But she has had people gawk at her and question her because she does not look ill or handicapped.

“They don’t see it, but I can feel it,” Stewart said.

That has led to her making fliers and signs that say, “People with pain matter,” because she urges others to avoid judging those who live as she has to. “Don’t judge what you cannot see,” she added.

As part of increasing awareness and understanding, the U.S. Pain Foundation has kicked off a project asking those with chronic pain to send in their stories. “It’s really more of creating an understanding,” Stewart said.

Locally and for starters, Stewart has a display in the Canton Public Library through Sept. 16. It’s a display of facts and information about chronic pain and awareness, as well as information about he U.S. Pain Foundation and additional data about RSD/CRPS, the autoimmune diseases from which she suffers.

On Tuesday, Sept. 13, she will attend the Canton Township Board of Trustees’ meeting to accept a proclamation designating September as “Pain Awareness Month.”

Other activities will include:

Wal-Mart in Canton, store No. 3476 on Ford Road: 1-3 p.m., spreading awareness of chronic pain with items from the U.S. Pain Foundation.
Monday, Sept. 12 from 10 a.m.-noon, Stewart will have a booth for “Senior Day” at the Canton Summit ..She will hand out items to increase awareness, as well as offering 400 bags of information and items for Seniors.
Stewart also plans to fundraise for the pain foundation and plans Someday, to head to Washington D.C. to meet with officials of individual states to raise awareness and to make changes for people living in pain, she said.

 

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original article is here:  http://www.hometownlife.com/story/news/2016/09/09/canton-woman-pain-warrior/90134682/