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).
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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???
First of all, I want to say “thank you” to Jean Price and to Doug, for agreeing with me. Doug, I was not wrong actually. I was stating that this “could hurt many pain patients” and that is true. You say that “this will hurt many pain patients” and essentially we are saying the same thing. I am literally speaking of only those of us who depend on Opioids for pain control. That is not the total amount of the pain community. There are those with SCS and pain pumps….and there are others who do Acupuncture and Ketamine infusions and other kinds of pain modalities that are offered. So I was only speaking at that point that these CMS strategies for USE/MISUSE of Opioids, could hurt many pain patients; meaning the ones who this is affecting and will affect. Jean Price, I thank you too, for agreeing with me. I can always count on you for commenting with a Nice article to my article. Thank you so very much Jo Dawn, Lisa and Connie, you are so very very kind and you made my day! You made me smile and you are so thoughtful to take the time to write such kind words. As for Danby, I am so very sorry for the loss of your friend and I will keep him and his family in my prayers. In fact, I keep all of you in my prayers! If you would like to know more about what is coming with this and the CMS strategies, you can see my live video and my post on my facebook page Called “People In Pain Unite” as it is all there! Visit: http://www.facebook.com/peopleinpainunite and scroll down to the March 3rd video and letter posts. I disagree with those who feel that writing letters and talking to people in positions of state or federal Government doesn’t help. I firmly believe that these actions can and will help. to make changes. But that’s just my opinion and it’s not better or worse than others, it’s just mine. I also want to let you know, especially Jean; I’m not totally positive and perky person or anything like that. I have to work at it. I have gone through many “dark” periods in my life when I didn’t understand why these things were all happening to me? I used to ask God , how could he love me and let me be abused my entire life? By person after person after person and by those who I was supposed to trust! The disability people told my husband that I was a the “worst case of childhood abuse/trauma they’d seen in 36 years.” The Psychologist I used to know, told me that people who’ve gone through what I’ve gone through (*and that is before I ever started my medical/physical pain journey) can usually turn out in just a couple of different ways. They can be: crazy, abusive, or some die. He told me that I was “not the norm, in that I turned all of that pain into trying to make sure that it doesn’t happen to anyone else as long as I can help it”. It’s true and things continue to happen to me somehow and I get more and more illnesses on top of what I already had and it gets maddening sometimes. So many of us all feel that way too, I know I’m not different. But I just wanted to let you know that I have my days and times of being flat out in bed and unable to function. But I found that wearing a necklace with “HOPE” around my neck for years, did nothing for me. Until I actually started to use the word “HOPE” as a verb; I didn’t have any. Once I saw it and used it as a verb, I realized that one must DO something in order to have HOPE and/or Positivity in their life. So I got off my self pity train and got up with my wheelchair, motorized scooter, seated walker or my cane, depending on the day; and I did something about it. I stopped complaining so much because no one that I ever complained to could actually fix anything. I had to be positive, speak positively and kindly and believe in my own positivity and my own good attitude. Now I try to use it or to turn the pain around and I use that energy whether it be from my bed, under the covers or from my Recliner; I just start writing and writing and writing some more. I don’t just write but I “do” things whenever I can and whatever I can “do”. Stick together and we can all help each other. Love and hugs to all and thank you..once more
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.
It’s not easy to count our blessings until we have AFFIRMED the awfulness of living in pain! In fact, if we try to do this WITHOUT the affirmation…our blessings can seem a little hollow somehow! And although we all likely know someone who is worse off, pain is so very personal!! And it’s our pain, our life, our family, our finances, our doctor, and our medicine needs…OR OUR LACK OF CARE…we EACH deal with. So how do we get this all important affirmation? So we CAN count our blessings…and allow them to pull us through the hardest of times!
Well, it can be very difficult to get that needed affirmation from others…especially right now when pain seems to have become synonymous with “those people who take drugs”!! Often our families may give us a little…yet just as often, even they really don’t understand the depth of our struggles, and they want us to feel better so THEY will also feel better. Or they may just want to ignore it all, because it hurt them to see us hurt!. The same with most of our friends…the ones we still have any contact t with! (Unless they are the special friends made in association with our pain.) We all know there are few doctors willing to affirm our pain and the difficulties we have in functioning, since many are now much more focused on reducing our lives even more…by way of reducing the appropriate medications we get some relief from!
So WHO will come to our rescue and just say…”I’m sorry you hurt so much, this just has to be really difficult! It’s not at all fair! How I wish there was something I could do! You’re so brace to face each day with pain! I don’t know how you do it! And I’m so glad you do, because you’re so special! Once we hear this, we can then find our own hope and count our blessings fully, willingly, and gladly…and honestly! Yet without this…what are we to do?
Well, the best person to do this FOR you IS….YOU! YES! You are the one who knows how hard it really is! You are the one who wishes there was something else to do! And you are the one who IS courageous and strong, facing each day as best you can…and fighting to get as much out of life as possible…even WITH PAIN! WE truly can learn to AFFIRM OURSELVES…and we must!
For one thing, it’s all true! We ARE strong and this IS hard and we don’t deserve this…yet we KEEP going. Even now, with all the discrimination and the senseless guidelines that have so decrease our lives! And we are good, wonderful people who are STILL creative and compassionate and talented and intelligent and caring and loving and honest and…well, WE ROCK!!! Even with pain! Despite pain! AND when we learn to AFFIRM ourselves, to refuse to look at our limits and let ONLY that define us…we can see how many little AND large ways we are blessed, and feel fortunate to still be US! And to still be worthy and very special!
Regardless of the restrictions on medications or the questionable quality of care, NO ONE can take this away from us, (unless, of course we let them). So as we work to make things better, to communicate with those who have the power to change this and return to appropriate care, it’s good to remember we are not less because of pain! We are not less because be often can’t do as much as others. We just happen to have restrictions, and struggles…and yet we know much more of what is TRULY important in life and…and we know WE are part of what IS IMPORTANT!
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.
Well done again Suzanne! Your words speak all truths from personal to perspective of other’s pain. These words are exactly what I say to my best friend of 45 years as she is now beginning her journey of chronic pain. Because she is only beginning to go down this “rabbit hole” I’m always there to give her the support she needs because we all remember when we were just entering through the Looking Glass. It’s been 20 years of Chronic Pain for me, 10 of which I refused to take medication and became a workaholic so as not to think of the pain. But what I gave up during those ten years I will never get back and that is giving all my attention to my young children of 3 and 7. When my permanent disability started after my third cervical fusion that left me in unspeakable truths of what Chronic Pain was really like. The loneliness that came with it as I knew no one who was dealing with the same issues I was. My friends prayed for me as I went into each different procedure or another spine surgery, but even my own husband could not understand that the more I did the worse I felt and he would just watch me do things around the house that I wasn’t supposed to do, but otherwise it never would have gotten done. We finally got a housekeeper in once a week because I can not clean keep up with the cleaning of my home and he didn’t want to do the floor washing and vacuuming and all the rest to keep our home clean. But like you said, my pain is different than your pain and your pain could be worse than mine. For the past two weeks I went through horrors at the pharmacy and with Medicare and spent an agonizing total of 4 hours in the pharmacy last week waiting for approvals to the insurance company. I went in at 10:30 am as I had a family emergency I was trying to get to as fast as I could, and after 4 hours of waiting, I could wait no more and had to leave without my morphine. What I went through that weekend was nothing short of misery until I was able to return home 2 days later and finally get my morphine. I spent over an hour on the phone with Medicare that following Monday and would not let them off the phone until they found their “glitch” as I knew it was the doctor’s error or the pharmacists error as I did finally get my medicine. Ninety minutes later, the girl on the other end of the line finally found the problem and yes it was on Medicare’s end and no one else’s. They had the wrong “factor” in the data field. It should have said “Safety Risk, Talk With Patient” but instead read “Prior Authorization Needed.” And yes, this is the same medication I’d been on every month for the past 10+ years. But my story has a small happy ending here, because like you said, what might be my worst, is not the same as another’s. Yesterday, I spent the entire day with my BFF. For weeks I’d been trying to tell her what she needed to do to “get her arms and legs to feel better” to get her muscles working again and how she needed to fight against the pain forefront and place to to the back of her mind. I think she understood, but was in too much pain to understand how that could possibly work if she couldn’t even lift a cup of coffee or how it took her 10 minutes to climb the steps to go to her bed, so there she lay on her sofa for weeks. Yesterday was her first real venture “out” of the house other than doctor appointments. She knows how much I understand what she is now dealing with and when she would talk, I’d always say “I understand,” however, yesterday she said to me “I know you understand, but please I need to talk about how I’m feeling so please just listen,” so listen I did. But it’s what I did afterward that I think gave her the understanding of how to cope and live with the pain instead of the pain taking over her life. I took her out to lunch and kind of “tricked” her into going to a craft store to look for just this one thing I thought they had (I knew they didn’t have what we were looking for.” Well, we were there for 2 hours walking around, enjoying every thing we saw and while waiting in line to pay, I noticed she was swaying with the music that the store had in the background. And I said to her “Look, your dancing! YOU ARE DANCING!” I know I paid for the hours on my feet last night and today, but to finally see her beautiful smile and now she knows she can still do things and not think about the pain was worth every minute of the pain I have today! I told her she has something today to help her that I did not have. She has me because I’ve been down that same rabbit hole time and time again over the past 20 years. Back then I had no one who understood what I was going through and I always felt like I was a burden to others when I needed a ride for a procedure or surgery or doctor’s appointment. There were times that I had to have procedures that I should have been asleep for, but because I had to drive myself, I was awake through them and through the horrendous pain I would never have felt had I been asleep. I’m glad I’m there for her because I can help guide her through the difficulties we all now must face with the government believing it knows so much more than our own doctors do about what we need to have any type of quality of life. Suzanne, your writing is beautiful, thank you.
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
Excellent article! When I apply it to my situation, part of me knows that there are so many who suffer in far worse ways than I do. But, I also know that very few people have experienced an electrical injury like me and have little to no knowledge of the type of head pain I experience. I’ve been told by my doctor that my pain and the brain damage suffered from the accident can be compared to the pain that a brain tumor can cause as well as traumatic brain injury. He says that the football players who’ve had multiple concussions and experience the resulting aftermath after retirement is probably the closest analogy to what I am experiencing.
However, I know, without a doubt, that many suffer far worse than I do. I became friends with a chronic pain sufferer. We shared a bond that only chronic, intractable pain can create. For 3 years, we tried to meet at least once a month, sharing frustrations and difficulties that no one else could really understand. His pain was a result of treatment for cancer in his spine. The radiation resulted in terrible pain, and he was slowly losing the ability to walk and drive. He was lucky if he could find a comfortable position for 10 minutes. As his pain continued to worsen, and he began to have difficulty getting the medication he needed because of the opioid paranoia that was in its early stages (2 years ago), he told me that he couldn’t take it anymore. I completely understood and there was nothing I was going to say to try to talk him out of what he’d decided to do. He called me for the last time on a Saturday. He thanked me for my friendship and the time we spent together that helped so much. The following Monday, I was informed that he had passed away.
I miss my friend, but I know his terrible suffering is over. I’m also glad he’s not around to witness the persecution of chronic pain sufferers (who need opioid meds to survive) that exists today.
I think of him often, especially when I’m hurting so much that I wonder how much longer I can take it. I know that I haven’t been to an ER for pain relief in 14 years due to finding a doctor who has prescribed the appropriate meds that manage my pain better than anything else I have tried over the 26 years of suffering. But, I am starting to believe that the writing on the wall is actually going to start happening, especially when Medicare gets involved with their limits on the amount of pain meds that Medicare Part D will cover. Of course, they aren’t taking into consideration that I’ve built up a tolerance over these 26 years. What is an outrageous amount of medicine for one person is barely enough for me. And I think of my friend when I consider what I will do if my meds are cut back. I wonder if I will see him again, much sooner than I imagined just a few years ago.
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”!