
No Competition, No Winners!
by Suzanne Stewart
We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST. What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.

Suzanne Stewart
Consider Brian Greene’s idea, as he writes about the string theory in clear English: He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, the patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life. Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse. It even gets more difficult to find things that make you smile again.
Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them!
The new “CMS strategy for use/misuse of Opioids” is happening as I write this article. Let me explain, this is the Centers for Medicare and Medicaid Services -they intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain.
There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017; to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out. We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief. (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!
There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications.
Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them.
I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form. That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in! My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up! I have to keep on fighting for my rights and for all of our rights!
After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.
Every one of us has real fears, anxieties and true pain. I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman, in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living with chronic pain have not been able to achieve any of those things, not yet, anyway.
What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair” or that our pain is “the worst”. But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.
We cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation.
For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).
Suzanne,
Thank you for a heartfelt and thoughtful report about your battle. I will share it with our CRPS patients.
Wishing you less pain every day, and more good days than bad on the road ahead.
Dr. Michael Cooney
Hi Janice,
You can find your congressional district representative here, by zip code: https://www.house.gov/representatives/find/
How would one go about finding a “list” for each state, city’s ” representatives” that one could write, flood with emails? Along with the incopendent DEA? I personally see no positive action from our current administration thus far. Too many so many are suffering. There are medications right now to help ease chronic pain . Yet many lives are being abused by the denial of fair access. Everybody please keep up your spirits this seems to be a true test , one no one should have to take. If I could know who specifically to contact, I wouldn’t leave them be until a difference for the better came about. Keep the faith everyone. Maybe the medical professionals should begin to referr to the medication chronic pain sufferers take not as Drugs, but as medication resolve necetation. Would the DEA be so in editors to go after those taking medication resolve necetation???
Here’s a link to the US Pain Foundation Newsletter that is referred to in the article.
http://myemail.constantcontact.com/March-newsletter–U-S–Pain-launches-support-group-training-program—Points-for-Pain-raises-nearly–9-000-in-three-games—Take.html?soid=1103157487426&aid=GI2V7K2s0GY
It seems to me a more timely notification would have been appropriate.
After being on prescribed opioids for severe chronic pain for 23 years I’m now without my medication without the ability to leave my home I’m now fully disabled cannot leave my bed. All because my doctor dared prescribe over the “recommended daily morphine equivalent”. These drugs had given me an almost fully functioning life. The suffering will only get worse. I’m a mother a wife I’m 35 years old and my life is already over. This is inhumane it’s cruel. I’d be better off either dead or addicted to illegal drugs but as a mother can morally justify neither of those options. Any doctor going along with these opioid guidelines deserves a life of pain and a special place in hell.
Yes Suzanne you are absolutely right on most points. The sentence that you said “could hurt many pain patients” though is wrong. The fact is that they are hurting a lot of pain patients.
As proven many times before & in several letter writing, phone call & email campaigns to bureaucratic agencies and and elected officials. This hasn’t worked in the past. Not because of the lack of trying by those who participated, but because of lack of participation by those who should be. Organization and tactical planning is the key and the only way any of this will work.
Representatives and Bureaucrats are not swayed by thousands of letters and calls. It’s going to take hundreds of thousands or even millions of calls, emails and letters to these corporate and political puppets. They have their goals and Tunnel Vision to boot. Their actions are always in a strait line to get to their destinations unless something is in their way. This is where pain sufferers must block their path forward. But, we have to be smart, peaceful and professional in every action.
We cannot allow our pain to be our excuse not to participate anymore.
We have to STOP feeling sorry for ourselves and quit hiding behind our pain.
We ALL have to participate in one way or another. We don’t have to leave our homes to make calls.
We don’t have to leave our beds to write emails and letters.
If we’re able to tell our stories on Facebook or comfort our friends in closed groups who may have had a bad experience, than we are able to present our case to those who are attempting to hurt us.
Now, here’s how we can make a much bigger impact. Search your state and local area for an Indivisible Group on Facebook. Within each one of these groups they have subgroups for Disabled people.
Indivisible has a well though out and organized plan that’s not specific to any one cause. I’ve found that joining the Indivisible Group I did has introduced me to people in pain and other disabled people in my area. Our biggest battle has been the lack of support from the general public. I now have people outside of the chronic pain community who are listening to what has happened to us and are joining the chronic pain movement.
We need to remember that all actions against people in pain are political and from both sides of the Isle so we have to put our party preference aside and fight our battles our way and for our cause.
We the guilty until proven innocent by taking UAs when literally never failed one. I was an extremely successful Health Researcher until my medications were taken away. I can not think when in that horrible level of pain. So now I wait to die because my middle class salary has been replaced with disability I am ashamed of. I acan’t even work part time.
Please speak out against the new laws and blatant disregard for not having any quality of life.
Thank you, thank you!
You write with such compassion! And it was something I really needed today. I’m working on lowering my med doses…slowly. But this last step down (from 60 to 30, I won’t leave other details) has been SO HARD!
I needed your pep talk & comfort.
Knowing someone else understands is a big deal.
With love,
Jo
Thank you for all you do that helps those of us who can’t do it for ourselves.
Ok I found and article about it but was not on National-pain report, and the availability to make public comment on this new proposal has past as of March 3, 2017. This is such BS, so many people who NEED medication have already been taken off of it “Cod-turkey” because of tightened regulations, or had their meds severely reduced! The DEA/FDA are over stepping their reach, and it is affecting people’s lives!!! The war on drugs in this country, as suppose to be overseen by the DEA, they have done such a terrible job at doing anything about the war on drugs( here i’m speaking of slowing down the illegal drugs coming across our borders, and on the illegal drugs on the streets and such) The DEA has failed miserably at getting any kind of a hand on this, so to for them to prove their worth, they are going after us! people who are on medications for legitimate reasons, because heck, were easy to go after, their are records that lead straight to us, so because they have failed so miserably to get any kind of a hand on drugs on the streets, in the last 20 years, more drugs pore across our borders then they did 20 years ago, that is proof that the DEA has failed at their job, so instead they go after us, people who need medication in order to have any kind of a quality of life!!!!!…Yes, there are some people who misuse their medications, or abuse them, but studies have shown for the most part that more of us use our medication responsibly, and for good reason, so this just is not fair, not fair at all, and people who these regulations cause to lose their medications, some of these people end up dead, because they can’t handle a life of unbearable pain!!!!….these regulations are killing us!!!!!!!!!
I don’t know about this “new strategies” your referring to, how do I see the National pain report article from Feb.1, 2017, that you are referring to? someone please tell me how to access the article that is being refered to in this aricle
They don’t listen because they don’ care! They don’t care that they are supposed to be physicians , who along with saving lives and healing illnesses, are supposed to relieve suffering. The entire medical profession is failing us. I am glad to no longer be identified as a physician. The entire group is driving me to pessimism and disgust! Have they become only interested in that monthly income?! Money was never supposed to be the reason to become a “healer”!