OPINION: Advocacy, Opioids & Being the Change

OPINION: Advocacy, Opioids & Being the Change

By Suzanne Burnett Stewart

suzanne-burnett-stewart

Suzanne Burnett Stewart

I am guessing that we pain sufferers all feel the way that I feel today, at one time or another.  Today it feels as though things are piling up.

Not to me, I say. After all, I’m a Health Advocate, Awareness Warrior, Pain Warrior, Ambassador, Mentor, fundraiser, event planner, writer, fact finder and guest blogger.  Of course, I’m also a chronic pain patient, but feel that I should have big shoulders, whether they hurt or not.  That’s been my place in this not so new life, since 2002.  The pain is not my choice, but how I choose to deal with it is up to me. I choose and have chosen to help myself and others. By advocating, fighting, writing, posting, protesting, tweeting, & attending conferences for all of us.  Like Ghandi said “Be the Change you want to see in the world.”  I say change starts with me!

I try to listen.  I don’t mean just “hear what is being said” but hear what’s not being said and try to make something good happen in all our lives.  I like to make change that is good, even if it is only to put a smile on someone’s face for one day.  I truly enjoy caring about other people and making them feel good or better about themselves or their situations.  I remember one time, in one of my own support groups that I still moderate today; I got to do something extraordinary.  One woman had a wheelchair that was too big for her.  I found a man who had one that was too small for him.  I got the two of them together and they swapped wheelchairs.  The joy on their faces and the feeling of warmth that I got from that experience, was the best medicine that I could’ve ever had to help “me feel better.”

And yet it is suffering that is happening right now, today in many doctors’ offices, pharmacies, emergency rooms and patient homes.  But I won’t allow us to suffer in silence.  It’s happening and has happened to me.  I’m not watching the “Opioid War” play out on a television show – I’m living it.  My husband dropped off my legitimate prescription for opioid pain medication 6 days ago.  He took it in 2 days early, as per our routine, to be filled on the 3rd day.  This happens monthly, not only to me, but to many other chronic pain patients.  After suffering for 3 days without my pain meds and being at the mercy of the Pharmacy/Pharmacist, I finally obtained my medication.   It’s not safe to abruptly stop taking these meds for several days.  I’m in a small subset of pain patients who are candidates for opioids for medical reasons because they do help to lessen the pain.

This is not an “Opioid War.”  It’s a “war” being fought by chronic pain patients and some supportive physicians and organizations that stand tall with us.  It is all of us against the mainstream media, PROP, addiction specialists (who only see dollar signs in our pain), the CDC, the DEA and some unfortunate people who’ve lost someone to an overdose, I’m afraid.

The reward for my advocacy work is inside my own heart and soul and gives me an inner happiness or peace that nothing material can top.  It feels good in my heart and soul when I’ve helped another pain patient feel revived or even just a little bit better, less afraid, less alone.

But today, I am feeling sad.  This is the harder part of my journey; along with the loneliness, stigma and then of course my own pain which echoes within me and vibrates like an earthquake.  I know other pain patients feel that it seems insurmountable at times.  I am a chronic pain patient just trying to survive one day at a time, like everybody else.

So, let’s remember this!  These opioid pain medications are available, have low side effects and they are not expensive.  People who need them and who get relief from daily chronic pain, should be able to have no problem getting these medications. A true chronic pain patient is not “addicted” but “dependent” on the opioids.  We do not get a “high” and we do not “crave them.”  We take our medications responsibly.

These opioids help many of us who’d suffer in pain daily without them.  My favorite advocate, Helen Keller, once said “I am only one, but I am still one.  I cannot do everything, but still I can do something.  And because I cannot do everything I will not refuse to do the something that I can do.”  I will continue fighting for our cause as long as I can breathe.

We must fight because we cannot afford to lose.

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth”(suzydukettes.wordpress.com).

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There are 22 comments for this article
  1. Tim at 1:40 pm

    I have been a chronic pain opioid prescribed non cancer paient for almost twenty years. I too am in the group of patients that HAS to see a Pain Management Specialist every two months. My pain medicine is starting to be reduced by 80% as per the CDC guidlines adopted by the individual states and I see intolerable pain ahead. Even on current medication I live in pain 24 hours a day. I sleep on average 2 to 4 hours per night at best “dozing”. I tuly do not know how to handle the coming storm. I have had one back surgery with another to follow a year later to fuse my vertabra together. I was placed into the “failed back surgery syndrome”. It has taken many years to find a pattern of rest, using ice, oral medication, and a lot of prayer to get to the point of thinking maybe I can hang on a little while longer. Quality of life is bad. Pain is an actual disabling health condition that needs to be treated on an individual basis. My pain doctor is fantastic and actually understands and has feeling for his pain patients. Strict contract, every visit a urine test, every visit a pill count. I have been responsible, my doctor has been responsible, yet the CDC and other agencies find it appropriate to “punish” all because of the mortality rate of opioid users. I do not drink alcohol yet if I wished I could go buy as much alcohol as I wanted. What am I charged to do with the alcohol as an individual? Drink responsibly! Don’t get me wrong, I do not “slight” those who choose to drink. I am just saying there are those who will drink responsibly just as there are those who will medicate responsibly but it seems as everyone is put inot one basket. I read Suzannes article and I admire her, yet there are some folks that are not even able to fight the good fight except from their computer. It seems the chronic pain impaired have no voice even though there are literally millions nationwide?

  2. Anne Fuqua at 11:26 am

    Suzanne, your story is truly inspiring. Thank you for all you do to help fellow pain suffers. We all owe you a deep debt of gratitude for your hard work.

  3. dave at 12:04 pm

    Being an advocate in todays world is no easy thing and i credit Suzanne for her kind hearted and inspiring efforts to develop to improve civil society and the lives of those in pain.
    I have to admit, when i was in pain for 4 years i did next to nothing to help others- i was consumed by my illness, my pain- and my desire to becme disease free. Only 8 years after becoming pain free -when i witnessed many people suffering pain and not getting thehelp they needed- was i willing to do something about the sorry state of pain care in America. And i know firsthand how clueless, stubborn,judgmental indifferent, lazy, certain government and providers are toward people in pain. As the saying goes- Hacer el Camino al andar- we have to create our own roads by walking. Im glad to see Suzanne walking the walk and creating a road for people to travel on to a better life.

  4. Leigh Peltier at 12:02 pm

    Thank you so much for this. As always, we’ve gone too far the other way in dealing with opiods. So that people like you who need pain meds and take them responsibly, have to feel like an abuser and desparate. I just looked in my pain med container and I’m going to have to order some next week and I always feel like a junkie when I have to ask my rheumatologist. Fortunately he’s great and knows my history and use of the meds and will always give me some, but I’m not sure if that will always be the case.
    Thanks for supporting chronic pain patients and for being a voice for us!

  5. Suzanne Stewart at 5:11 am

    Thank you so much for your lovely comments. The kindness and warmth is overwhelming. It makes me feel, that on those days when I don’t think I can do it another moment, I can keep going because of all of you! The place to start is to go to the http://Www.USPainfoundation.org and get info about things as easy as tweeting our congress people. Writing to them and even tweeting the presidential candidates! US Pain helps My giving talking points when you don’t know where to start! There are many programs to get involved in where you don’t even have to leave your house! Also, RSDS.org has much info and many ideas to help from your home! It’s a place to start! If you need anything, feel free to visit my blog and contact me there. Thank you so very much! I’m an Ambassador for U.S. Pain Foundation, If you want to ask questions there, you can write for info/help too, at: info@uspainfoundation.org

  6. Shirley at 1:59 am

    Hello Everyone! To each and everyone of you I wish, love, peace, endless hugs, healing hands of your God to touch you and a gigantic smile for your beautiful face. Now to business. I contacted my States Governor, Larry J Hogan about all of our problems. SIT DOWN, TO READ MORE… He wrote to each local department and asked them all to help me get anything that I’m having problems with. My phone and Gmail is ringing and dinging every day with someone offering to help me. It literally made me sob uncontrollably because he truly cares. Them he donated a few million dollars for DV issues, which is what started my problems. There are those in high places who get it. DON’T GIVE UP. IT’S OUR WILL TO SURVIVE THAT’S GOTTEN US ALL THIS FAR, KEEP UP YOUR FIGHT EVERY DAY! CONTACT YOUR GOVERNOR, SENATOR AND CONGRESSMEN. KEEP DOING IT. ALSO, PLEASE KEEP PRAYING FOR MARYLANDS GOVERNOR, LARRY HOGAN, HE RECEIVED CLEARANCE FROM HIS FIGHT WITH CANCER, TRUST ME, HE UNDERSTANDS US. ALL MY LOVE. Shirl <3 🙂 , ,

  7. Rick Kelly at 9:31 pm

    God Bless. I’m on your team. Put me to work. I have mad talent and contacts but unfortunately typing hand issues. I’m a generalized CRPS late stager w many spinal complications. Both legs smashed too. Unless you have this modern day ‘leprecy’ there is no way to explain the excruciating bite. I’ve had a collar brake, kidney stones, appendix burst, and full torso road rash, & nothing compares. Our ‘nanny’ govt is only gaining more power.

    Got to stay positive so suit my dumb a** up and put me in coach.

    I figure God honestly that I’m ‘under’ medicated 80% of time, over medicated 10%, and functionally 10%. They say they only want u to use the ‘bare’ minimum. Huh?

    Am I wrong or is that f*%#^<up!?? Would Dr. Dr. grant you enough insulin to advert emergency?

    We need a lot more than the pathetic 6 replies you received. 🙁

    Keep up the good fight and count me n.

  8. Dooney at 9:26 pm

    Suzanne Thank you for your advocacy of pain patients. No one should have to go through 3 days without their meds. Would this happen for someone without chronic pain, probably not.

    I left the big chain pharmacy where I felt judged, no one knew my name, and could care less if I had any issues with insurance, no meds in stock. Etc

    I transfered my meds to a grocery store . It was like being on another planet. Caring, kind, compassionate techs and pharmacists who helped me numerous times. I suggest anyone having issues with the big chains to try and switch. Of course I had some issues with meds out of stock but they ordered ASAP I have to take a brand name so it has to be special ordered. Evem though it was theit fault, I never got upset with them because they are so good to me .. I don’t have anxiety anymore when I have to walk to the counter now to get my rx.

  9. Jess at 4:23 pm

    A mass youtube hunger strike. Its the only way. They want us to just kill ourselves quitly, unseen so they can blame it on drug abuse. BUT A HUNGER STRIKE THEY CANNOT SILENCE, IT IS THE ONLY WAY NOW TO DO ANYTHING TO CHANGE THE COURSE AND WAKE UP THE AMERICAN PUBLIC, IF WE ARE STRONG ENOUGH TO LIVE WITH ALL THE PAIN THEN WE CAN SUFFER 45 DAYS WITHOUT FOOD AND OUR SACRIFICE WILL HELP MILLIONS OF OUR CHILDREN SO THEY WONT HAVE TO LIVE LIKE WE DO.

  10. Sheryl M Donnell at 3:56 pm

    Well said my dear friend! And as this witch hunt progresses we are now finding out there has been no real change in deaths in “our” group at all. The CDC changed its methodology for classifying what an opioid death is to include every.single death where a person had been taking opioids. Have a heart attack at 95 while taking a single Percocette once a day for pain, it is an opioid related death. Die in a car crash as a passenger and you took a Vicodin recovering from surgery. Opioid related deaths. Died from alcohol poisoning but took a Percocette for pain at 8 am, you still had uncontrolled pain all day so you drank yourself to death to try to number the pain? Opioid death. Heroin overdose having never taken a prescription opioid, opioid death. Died taking an entire bottle of Valium and accidentally took one Norco mixed in that bottle?Benzodiapams death? Nope…Opioid death. And now we hear that big financial houses (Bain for example)have been selling futures on Opioid Rehab since 2012 and people are making a fortune. Follow the money. Unfortunately, they knew we were to sick to mount a huge counterattack, OR ARE WE? WATCH OUT .WE ARE WARRIORS!!!!

  11. Brenda Dunn at 3:21 pm

    I just had back surgery l4 l5 and the day of surgery after surgery I was told in the hospital that I could not have pain meds because I had a marijuana card. I told them not true don’t even smoke it. But they the doctors said I do so I went all that day and night in such pain I cryed all night the house doctor finley prescribe to me but only two weeks worth. I have to drag my self out to have a drug test every 12 days.. This is sick what is going on to treat people like this for God sake. HELP

  12. Sj94510 at 1:50 pm

    I am a fellow pain suffer like all of you. I have been through believe it or not at least two doctors that had license revoked. This had nothing to do with ME. But, when you see another doctor they often treat you like a risk. Now recently this Sept. a doctor a was seeing in the Bay Area Northern California just up and left the practice. I think he made a great decision based of the other NP’s and a D.O. that are with this practice. I have never been injected so many times every two weeks. Pain was aggravated and unfortunately dr. never wrote script correct so he wrote to little pills. Then I was accused of misuse, abuse, addict, then forced to a life threatening taper or asked to leave. This cost me $1,500+ for 2 week supply of meds. All due to these over aggressive practitioners. Now after running out of my meds for 3 days, I have kidney stones? I’m back with a Pain Management Doctor that is an Addiction Specialist. He is giving me a safe dose, not a comfortable dose. If I take 1 more a day I am screwed. Trying to stick with it. I have been chronic pain patient for 20 years, on medication that is life threatening to cease abruptly. I have to go to Dr every two weeks $$$ my bills are costly. I am with you and want to participate in anything that can help us pain sufferers. Bless you all be well!

  13. Lillian Holly at 11:17 am

    As Ms Stewart, I too get relief from chronic pain by taking opiate medications. I am also very concerned about the availability of these medications in the future as well as physicians who will write the scripts. My family physician will no longer treat my chronic pain and I am now going to a Pain Clinic. I find it frightening when I hear about similar situations. I just recently read about a gentleman with severe chronic pain whose Pain Clinic closed abruptly, leaving him with a month’s refill and no referrals elsewhere!
    I am not sure what one person can do concerning this dilemma but I like Ms Stewart’s attitude! I started with this email and I hope I get some feedback om other means of action I can take. Just think if we all take that first step!

  14. Renee Mace at 11:04 am

    Suzanne as a fellow pain sufferer I have your back, if you start a protest, count me in. I hate what this lower of my life saving pain medication has done to my life. I live just for the few moments when my pain is managable, then the rest of the time, I needlessly suffer.

  15. Annette Merkley at 9:46 am

    My heart aches for all the wonderful people such as yourself that suffer from this disease. With all the horrible things that are happening in the United States today, our own government (that is supposed to be for all the people) taking away the rights of pain sufferers to have access to the only medication that helps them is the worst! Folks with a legitimate diagnosis of RSD or CRPS, etc., should not have to be made to jump through all these hoops, fight with doctors and pharmacists, and be treated like addicts as they try to get their prescriptions to live with less pain and function on a daily basis. I am the parent of one of these people…I’m getting up in years and praying that I live long enough to see this travesty of justice reversed. All the emails, letters, rallies are of no use…the CDC, DEA, Congress, etc., are just not listening! What is it going to take to change this unjust government takeover of our healthcare system?

  16. JesikaEdith at 8:32 am

    Thanks so much Suzanne!!!
    Lots of us , pain suffers , are trap in this wrongfulness assumption that all opiods users are addicts !
    The truth is … We can’t function without our Meds and taking even one pill affect us tremendously now imagine those who had loss them all !!!!
    Is a cry for help that keep being ignore no matter how hard we try to fight and be heard !
    Raising awareness and advocacy is more need it than ever … Thanks for doing your part !

  17. Jess at 8:19 am

    Thank you suzanne, thank you so much for acting where you can and being a voice for those that cant or are a afraid to speak or act.

  18. Carla Cheshire at 7:54 am

    Nicely written Suzanne. I too have faced this pharmacy dilemma when for some reason they “forget” to have the medication on hand when you need it. I always call a week in advance to make sure the pharmacist orders it. When I spent last winter in FL I had to go 7 days waiting for the pharmacy to process my Rx. All this talk about how the pharmacy was rationed for narcotics and the warehouse only allots so much. I wrote to CVS and called Customer Service but never received a satisfactory answer. They wouldn’t treat a cancer patient like this and I know because I was one. People bend over backwards to help you then.

  19. JERRY LA BATHE at 6:16 am

    Thank you for all you do for us who unfortunately are in this position and not by choice. Keep up the fight for us and God bless you!! A well-written Blog that says it all.

  20. Tracie at 6:06 am

    Bravo, Suzanne !! Giving the right to Pharmacist to “hold” of medications is appalling! The doctors write the prescription, the pharmacist have to run it through the database, to make sure we’re not addicts. I take pain medications and follow all the rules, I go to a pain management clinic where I’m treated like a drug addict. I’ve signed all my rights away in order to get my prescriptions. My pain contract States, all my confidential information is available to all doctors and hospitals, pharmacist, the state in which I live and the DEA. I’ve never abused my medication, it’s always had extra on my bi monthly count. I’m sick of drug test, I’m sick of being afraid. I have some unusual and huge stressors happen last month. I have an anxiety disorder, I see a psychiatrist, I take a very low dose of a narcotic for my anxiety. My psychiatrist called in my medication early, the pharmacist is not legally able to give it to me. I must wait 30 days since I filled my last prescription. This is horrible on my body, as we all know stress causes pain. We must keep fighting for our rights. It’s absurd that I have no doctor patient confidentiality no privacy in my life, health professionals making decisions based upon the new opiate laws.

  21. Signe Topai at 5:42 am

    Suzanne Stewart,
    Bless you for your courage, determination, and beautiful soul. You stand for all of us who still curl inward from the relentless pain. I wish/want to be more like you! God Bless you, the work you due and your family.

    Signe

  22. Marty Wolfe at 4:53 am

    Dear Susanne Burnett Stewart,
    I also have CRPS/RSD in both feet and my right knee after nine foot surgeries. I live in constant horrific pain and have tried almost every procedure, therapy, and medication known. The only thing that lowers my pain to a livable level on some days is opioid medication. I have always been 100 percent loyal to my opioid contract and take my medication exactly as prescribed. Since the new March 2016 CDC opioid prescribing guidelines, my PM PA doctor for five years has reduced my four daily dilaudid prescription to one per day. I am constantly way behind the pain curve and now live every day in sheer agony. I now see a therapist weekly because of my constant thoughts of suicide. Life is horrible constant pain, and my PA pain doctor could care less despite my protests. What ever happened to treating the patient? The CDC guidelines are the worst possible thing to happen to chronic pain patients that play by the rules and need opioid medication to live somewhat of a life. Thank you Suzanne for fighitng the good fight on our behalf! I would like to turn my overwhelming anger at the CDC and DEA into action. What specifically can I do to help? I am 57 year old and have been disabled for eight years so I have a lot of time and determination to help in any way I can. Please let me know. May God bless you, and all of us who suffer/survive with chronic pain on a daily basis. Marty Wolfe

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