Source: My Pain Is Not Me!
**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN, FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016
***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”
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
If you see the pictures on this page you will notice that I was or have been nominated for a few, “WEGO health Activist Awards” this year for 2016. I was really excited to find out this news. I mean, I worked really hard this year and it’s such a “high” to think that someone thought inspired enough about the things that I have been doing all year. I was nominated for: Best in show: BLOG …for THIS BLOG….now that is pretty cool, right?! Next up is: Best in show : Instagram, Twitter, Facebook and Pinterest. How fun is this, right?
Well, it might be fun, or it might not? I never mind the hard work part. I love social media, computers, gadgets, and technology in general. But I remember a few years ago, when I was a finalist for the “unsung hero” award. I realized that just being nominated was exciting. Becoming a finalist was very fun. I humbly and gracefully accept these nominations. But I am respectfully pulling myself out of this “game”.
I have been a health advocate since 2005. I started out a Chemo-Angel and I’m still in that program. I am a Card Angel, Chemo-Angel, prayer angel, and special assignment angel for the program. When I got Diagnosed with RSD/CRPS in 2007, RSDHOPE.org put me in touch with a “mentor”. This was someone who’d had the diagnosis much longer and could answer my questions and just sort of “take me under their wing”. Later, I became a Mentor for newly Dx CRPS patients, myself; and have been one ever since that time.
I have always worked alone, never really a part of any big group or “family”. I was part of the Orsini family at RSDHOPE.org, since 2007. I still worked alone, made up my own awareness events, and started my own fundraisers. In 2014, I made several RSD/CRPS bracelets. I raffled them off during the month of CRPS Awareness, which is November. I made $250 and sent it in to RSDHOPE.org.. Mom Orsini was so kind and thankful, I’ll never forget her kindness.
So now I have joined a bigger “family” and it is the U.S. Pain Foundation. I joined this group, this wonderful, loving and kind group of fellow “Pain Warriors” just last year in 2015. I love being a part of the U.S. Pain Foundation family. We look out for each other, and they look out for me. My husband and I went to their advocacy retreat in August, this Summer 2016. I/We had some of the most awesome times of our lives. We made real lasting friends and memories to cherish. I have found my little places in the pain world and they are with the U.S. Pain Foundation and RSDSA. I have more than enough to keep me busy and they always tell us to “take care of ourselves first”. We cannot be any good for anyone else, if we aren’t taking care of ourselves first.
I have great respect for the people and the organization at WEGO Health. I have done some research for them this year and enjoyed the online discussions afterwards. I got to meet “Julie” and I have become close to her. I would and will always help them at any time they need an extra set of eyes, hands or ears. I feel like our organizations together can empower pain patients by working side by side and giving a sense of “belonging”. This then makes us feel less alone on our pain journey.
I am very proud that WEGO health recognizes health activists and advocates annualy. But I am very happy to have been nominated because that nomination alone is a little bit of validation that I am inspiring someone and/or making a difference. To me, this is my “winning”. I want to do wonderful things and help the underdog, the sick, the people with chronic pain and invisible illnesses. I honestly, do not want to spend my time getting people to vote for me so that I can “win” an award. I have my “win” and it’s in my heart and soul. My “win” is hopefully that I’m helping others like myself. I pray that I am spreading HOPE and even inspiring others. We need to keep HOPE alive in order to make sense of some of the outrageous things that have happened lately in the world of chronic pain patients. We cannot let things turn dark or lose HOPE. We have each other and together we are empowered and we are strong. This nomination is enough for me and I thank you so much for those because that is my win, just being nominated.
This month was very busy and the next few months are going to be very busy for me. I have full body /systemic CRPS, along with many other health and pain issues from “A to Z”. I need to put my energy into raising awareness for Chronic pain and for U.S. Pain Foundation. Spreading optimism and positive energy is where I wish to be. I will also be very busy with the quickly approaching month of NOVEMBER. It is the month of spreading awareness for my invisible most painful illness of Systemic CRPS! I will be on the front lines with RSDSA, raising awareness and hopefully fundraising for them during this upcoming November 2016. As I’ve said before, “HOPE” is a verb. You must DO SOMETHING in order to have it. Then you must continue to do something in order to keep HOPE ALIVE. I just prefer to spend my time helping others, tweeting, writing and blogging for the pain community and the RSD/CRPS community. I don’t want to spend my time begging for votes from people and bothering everyone I know to vote for me every day so that I may be recognized or “win” something. I am winning now. I am winning half the battle just by trying to be as kind and loving as I can to all people I meet. I am winning by spreading awareness and optimism and Hope. If I can keep one person’s HOPE alive, then I have already won. If I can keep my HOPE going along with it, that ‘s all the better!
Thank you so much everyone for your kind words and your faithfulness. Thank you for these nominations below and I will wear them with pride. I want to keep inspiring and winning the war against stigma of invisible illnesses and chronic pain patients. I want to fight against our losses in the medication issues we face now days. This is where I want to focus my little bits of energy each day. I want to stay focused on the issues stated above and not on myself and “me, me, me” . I prefer to focus on YOU, my chronic pain family and on my darling very young granddaughters. With these I have JOY along with HOPE and that is the best of both worlds for a chronic pain patient. I thank you again and I humbly want to withdraw from the WEGO Health awards 2016. Good Luck everyone.
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.
original article is here: http://www.hometownlife.com/story/news/2016/09/09/canton-woman-pain-warrior/90134682/