I wanted to share this very important piece of information from another of our leading advocate Physicians, Dr Thomas Kline MD ( on Twitter @ThomasKlineMD). He wrote this article explaining the palliative care “loophole” for getting chronic pain Patients proper care.
Since the 2016 CDC Guidelines have somehow become “law” and set into place in the USA: pain Patients have had a horrible time getting proper pain care. Dr Kline has said that in most all of the 50 states, palliative care patients are exempt from the horrible restrictions for opioid pain medication therapy. In his article posted below, there is a certificate that helps to exempt the chronic pain patients from these opioid treatment restrictions. Of course the form needs to be filled out and signed by a qualified Physician.
Palliative care is defined as: “an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness”. Wikipedia
Below, I have attached Dr Kline’s article with the palliative care form for you to take to your Dr/Drs.:
I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?
How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!
“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!
This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!
You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!
What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!
Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.
Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!
Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?
Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!
A beautiful song was in my soul today! I went to church and asked if I could use the chapel! So this is “How Great Thou Art” sung by Carrie Underwood! I hope you get chills like I do!
This is my story for # Why I Sign? Campaign at #whyisign on YouTube, Instagram & Facebook. The CC is right there on YouTube and there’s one right on the video in my Instagram too! The link to my story in Instagram is here: Link to my #WhyISign Video withCC on Instagram and then the link to my #WhyISign story on YouTube (which also has CC for the “Sign Language Impaired” **Lol …just teasing) is just below this paragraph. Thank you for stopping by to find out my story and the reasons “Why I Sign”!!
AND….THATS…. #WHYISIGN ….bye ..Love, Suzy
Wego helped is a mission driven Company connecting healthcare with the experience, skills, and insight of patient leaders. They are the worlds largest network of patient leaders, working across virtually all health conditions and topics. Click here: to learn more about their patient leader network.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of Wego health: to empower the patient voice. The 16 award categories, the Wego health awards are the only awards across all conditions and platforms, that recognize the over 100,000 inspiring patient leaders who raise awareness, share information, and support their communities-but often without recognition.
First, I would like to say “thank you” to those who nominated me for this award. I appreciate the time, the kindness in your heart and thoughtfulness that it took to nominate me & this Blog, “Tears of Truth”. To be nominated for this award category “Best in Show-Blog” means so much to me. It means that I am reaching people and they enjoy reading what I write. I truly pray that I am helping people and reaching people who otherwise wouldn’t get some of the information that I offer and share. In being a patient leader I have gotten to work with many wonderful people, made new friends, and have had chances to do research on bio similar medications and other subjects to do with many aspects of various illnesses.
This year, the 16 Wego health award winners will be honored at the 5th annual patient advocacy summit in Washington, DC October 23 and 24th, 2017. I would love to be able to attend this advocacy event and collaborate with the industry leaders. If you’d like more information about the summit you can learn more if you Click here
I am now looking to my incredibly supportive network to help endorse me for this award. There is an easy way to endorse it only takes seconds of your time! Click here to be taken to my Wego Health awards profile where you can click “Endorse” under my nominee photo.
If I had ever supported you, made you laugh, or inspired you to keep fighting-please consider endorsing me for this award? In advance, I would like to say once more “thank you so much”. Without you I wouldn’t have a popular blog and I wouldn’t be nominated for this honorable award.
We all lose hope at some point in our lifetime or another. We get sad and start feeling hopeless when too many things happen all at once; that we consider to be “bad”, hurtful or depressing. We may start to feel overwhelmed and this causes some of us to lose hope. Sometimes it is the way we feel inside because of something or some “things” that others have said or done to us or said about us. Certain words or situations might hurt our feelings or even our ego possibly? The holidays seem to bring about an overabundance of feelings, situations and even hopelessness. At a time when Charles Dickens’ ghosts would be telling us that we need to learn from our past, live in the present and look forward to our futures. It’s not as easy as it seems. Even the Hallmark Christmas stories, have characters who, by the end of the story, are healthy, happy and hopeful. Those of us living with daily chronic pain are not immune to the difficult, hopeless feeling situations that actually multiply for us during the holidays. You see, we get these feelings on top of debilitating pain and most often, that brings with it, several illnesses and disabilities.
You might say to yourself, “What is she talking about? Why is she writing such a “downer” as this, during what most see as a happy time of year?” I’ll tell you what I’m talking about. It is this 4 letter word “HOPE”. It can be anything you make it, if you just think about it for a moment. People want “HOPE” to be brought to them. They want it as a “gift” from God. Some others think of it as a noun or a “thing” that we are entitled to. But in my lifetime I have come to love this sometimes mysterious 4 letter word. It intrigues me so much that I wear it on a chain around my neck. I have worn HOPE around my neck for years and years. It is my favorite of all words. I always thought that I’d get out of a bad situation if I just had “Hope”. Things will get better if I just keep “hoping”. I always thought that if I continue to wear my “Hope” necklace, then one day I will have “HOPE”; the noun, the “thing” that others seem to have.
But I did not “get” HOPE because you cannot wait for it, for the noun or the “thing” to come to you. I have learned that “HOPE” is a verb. A verb is an “action” word. I have found that HOPE is also an action word and you have to DO something in order to have and keep HOPE! If you keep waiting for it to come to you, that is when you will lose it. For example; as a chronic pain patient, in order to find a good Dr., one whom you trust and respect; you must continue to look. You can’t sit back and “HOPE” that others will find the Dr. for you. You must do the work of looking, hunting on the internet and reading the different reviews about many many physicians. You might have to do the tedious work of going to 3, 4 or even 5 different Dr’s before you find the right “fit” for you. But after you do the actions, then you can receive the “HOPE”. It will be rewarding to actively do the “work” or the job of looking for and getting what you want or need for yourself. Along with this comes the feeling of accomplishment and when you put those things together, you will feel more secure, happy and hopeful. See how it works? If you choose to do nothing, feel sorry for yourself most of the time, and let others do it all for you; then there cannot be much HOPE. If you try your best and keep making the end goal of having and keeping HOPE; making it a verb and doing the actions; I think you will be surprised at how much better you feel inside.I’m not saying that you can never feel sad, loss or grief. It is OK to feel sad sometimes, as long as you can get yourself back in time, before the loss of hope comes.
I have an example for you, and it just happened to me during these past few weeks. I was feeling sorry for myself and a bit hopeless. Silly as it seems, I had taken off my “HOPE” necklace and everything just appeared to be a bit bleak. I was experiencing higher pain levels because we live in Michigan and it’s been so very cold. I don’t like going out much or at all during this part of the year because of the higher pain levels along with extreme cold. But I do want to go out, because this is my favorite season of helping others, HOPEfulness and cheer. I love the lights, the music and the Christmas trees. I usually feel happier even when staying inside with my cat in my warm, cozy chair. I enjoy drinking something hot and watching the overly dramatic Christmas movies. But these past few weeks I had been feeling down and a bit hopeless. I was feeling that I was trying even when I didn’t feel good enough to try anymore. I continued “doing” when I didn’t feel well enough to do the things that I just wanted to do. But I was adamant about doing those things anyways. I realized that you must stop and take a time out, when you need one. It’s OK to be sad for awhile, but just when you feel that HOPE is lost, that is when you are keeping it as a noun and something that is given to you. But things will turn around when you remember to keep HOPE as a verb. Keep it as an action word and one in which you have to do something in order to have it. When you make HOPE a verb,something always happens to change the negative feelings in your life.
Just when my HOPE was draining, I received a large envelope in the mail. Inside was a blue folder with the seal of Michigan on it. When I opened it, I started to cry and I was ecstatic. What I held in my hands was a “Special Tribute” from the Michigan House of Representatives and from the Governor, Rick Snyder! I’ll Post a photo of the “Special Tribute” here so that you can read it. I have been rewarded when I have never asked for any rewards. I received a special tribute for the advocacy work that I do and my “compassion for others”. I don’t have any idea where it originated? I know who signed it and sent it to me; but what, how, why me? All I know is that I was feeling down and tired of constant pain, even though my pain is somewhat controlled. I was losing HOPE because I was waiting for someone to give it to me. I had to remember again, that it is an action of “doing something”. Though I did receive something in the mail that truly cheered up my spirits. In the end, I did something to make it happen.
Don’t lose hope because it’s not something you can “hold or touch”; it’s something that you “DO” or “act upon”. My hero was an Advocate, Helen Keller. She was blind and Deaf, but she never gave up. She was tenacious and I strive to be like her. Especially in that I’d gone to University to be an Interpreter for the Deaf and blind. I worked at a major Hospital as an Interpreter and at magnet schools for hearing impaired children. Then, in 2002, my car was hit by a man who ran through a red light. I won’t go into the multiple injuries and surgeries. But I will tell you how ironic it was/is that I am fluent in American Sign Language. Deaf culture & ASL have always been something that I love. As a result of the car accident, I also suffered a “Traumatic Brain Injury”. Part of that includes hearing loss and vision issues. I have a convergence insufficiency, chronic dry eye, my own hearing aids and prescription eye drops that I must use on a daily basis in order to keep from going blind.
Whenever I feel that I’m losing HOPE, I remember all that I have been through and all that I still CAN do. I try to remember to never stop doing the actions that keep my HOPE alive. Lack of action makes hope die and that is when I remember what my “hero”, Helen Keller, once said: “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”
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, do you know what I’m trying to say? 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. A friend of mine who is in my international buddies/bloggers group *( ladies trying to reach out via blogging, to help those of us in pain), she said this and I asked her if I could quote her here in my blog; she approved :
“Consider this idea from Brian Greene who writes on 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/ understanding. One person could feel that their situation is the very bottom of the “pit”. The very “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 RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine. She may scared because she is so young with 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 the love or the dream of being a mother and holding that baby for the first time? Maybe their dream is something different and they’ll not 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 and then even harder to find things that make you smile again
As for me, I’ve lost so much… and 2002-thru now has been a bit more than very difficult. I mean how many people have : lost their mother, their whole family and even their 18 yr old daughter; after raising her almost solely as a single mother? Then later, missed her wedding, and never even knew about having a granddaughter for a very long time; without ever meeting her? How many people have at the same time, suffered from: a CVA(stroke), PTSD from a history of abuse, POTS/Dysautonomia/NCS, a heart attack, TBI w/ 3 yrs of PT,OT & TBI rehab; all while enduring 12 surgeries following a terrible car accident?? Also at the same time, still suffering an added degenerative disc disease,A trial fib, 2 pacemakers, pectoral muscles totally needing to be rebuilt and R.A? All of that,along with “full body RSD/CRPSII”?? What if their RSD/CRPS is in their mouth, eyes, feet, legs, back, neck, knees and even into the chest wall and heart muscle?? Suppose this person also has nerve damage to ears, eyes, legs, feet, back, shoulders & hands? What if they have lost vision and obtained 2 hearing aids as well? Have you guessed yet, that this person is me? I went from leg braces to wheelchair for anything more than 10 minutes walking now. I have a motorized scooter that I cannot use anymore because my shoulders hurt horribly and I suffer from Long Thoracic nerve damage and have other Neurological damage/pain too. I have RA now and cannot take the immuno suppressant meds due to my immune deficiency disease called “Hypogammaglobulinemia”. Oh yes, and I have something called “Long QT syndrome”, an elongated QT line in my EKG, that gives no symptoms but is silent in that it only causes “sudden cardiac death”! My heart also suffers from MVP, Pulmonary valve hypertension, and tricuspid valve prolapse as well. I suffer every day from the TBI and the horrible forgetfulness and memory issues. Not soley “CRPS memory fog”, but deeper memory issues which people don’t understand unless they have true Cerebullar damage to their brain because a man ran through a red light one day while fighting with his wife. Then there is the CKDII and Asthma….. just so many health issues that are too many to mention here.
After my heart surgery this past February, 2013; I found out that my RSD/CRPS has traveled to my heart as well as my whole left chest area. I have so much pain in my neck, my knees, lower back, hands, feet, arms, legs etc, from several of these issues. At times, I’m afraid, I’m sad and I’m lonely. But I know that this is only “MY” worst, not any of yours; not anyone elses. We all have our own certain issues that are specific to each of us. We are all going thru each of our own private” HELL”.
I’m so sorry for each of you in your own separate situations…I cannot take the pain “journey” for you or go thru it with you in a personal way. But I can be your good friend, walk with you, next to you; next to your heart. I can love you and when you’re afraid; I can talk to you and virtually hug you and love you. We all separately need to know that we EACH feel like we are at our “worst” at different times. It depends, but every person has real fears and real pain.. Our own worst is still something we own as our personal “worst” experience, just as we experience our own personal best situations. I hope you all understand what i mean. I have recently read a story of 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 saw read about another, younger woman in the same kind of horrible pain. Both of their personal deep fears and pain came through. The younger one feels that she has so much to lose as she hasn’t even started her life yet. Some of us already have had our children and we’ve had real jobs for a while and may have even been through some good &/ or exciting adventures prior to becoming a Chronic Pain patient. Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger ones in pain, have not gotten to do any of those things, not yet, anyway. What I see through my advocacy with pain, Invisible Illnesses and RSD/CRPS; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the worse off”. We each may feel that our pain is “the worst”…our own personal worst. When I think about it this way, I realize what we are all feeling and I can empathize better with others in pain. I know that they also share these same ideas and solitude in pain. I just so badly wish i could just fix everyone. I love you all so much.. We will not give up, we will not give in and we will not stop trying to fight for a life that everyone deserves.
This is an article that I found online….I copied it for you here & I hope it helps people understand What those of Us with RSD/CRPS May go through! I am one of the “lucky” ones because this hasn’t happened to me much at all! I had an Immunologist say to me “sooo what’s RDS?”….My husband & I looked at each other…got up & walked out! I had one Rheumatologist say to me “well, I cannot confirm or deny your other Dr’s diagnosis of CRPSII, Because I see no evidence of it today!”…. Well he must’ve been blind because I could see and feel it AND I showed him photos of flares..Again we walked out, but not without telling him first, that I was not there to ask for confirmation of my full body RSD/CRPS! I had confirmation from 3 Dr’s already at that point! Everyone else, as far as medical professionals, have been kind and knowledgeable with regards to my illness! But as my friend and co-CRPS’er, Barby Ingle writes in her book “The Pain Code”..”Healing starts from within”….she talks of hope being a big part of dealing with pain issues! Here is the article that I found at http://www.wendyweckstein.com:
Complex Regional Pain Syndrome, CRPS has been called the invisible disease – and for a few very good reasons. Although there are some who are more severely debilitated by this disorder, there are many patients who suffer horrific, agonizing pain each and every day without any obvious outward sign of disability. There may be no wheelchairs or crutches, no big casts or bloody gashes to define the pain for the untrained eye which may otherwise easily miss a slight limp or a red swollen arm resting snugly against a protective body. In addition, many with CRPS often manage to function on a daily basis by going to school, work and participating in social outings whenever possible; all with a level of heightened pain that would knock the rest of us off our feet – helpless in bed. They actually smile when with a friend and carry on normal conversation as if nothing is wrong. The only way I can explain this is to say that when living with this level of excruciating pain twenty-four hours a day, every day, months after month, year after year the human spirit prevails. I watched my son find ways try to continue functioning, if at all humanly possible, with friendships and social outings, even school. He desperately wanted his life back and he learned that it was advantageous to add normalcy to his routine if he was able, despite having to cope with surviving this living hell.
It is possible then, to see someone suffering from this invisible disease walking down the street, attending school, smiling and talking with their friends and for you to think there is nothing wrong. It makes it even trickier with children, who have an even easier time smiling, having pleasant conversation or having fun with their friends while in a state of long term chronic and horrendous pain. Physicians are so stuck on the universal Pain Scale (designed for the adult population) which correlates terrible pain with grimacing, crying, screaming and sadness…that when a child walks into their office, and carries on a pleasant conversation – perhaps even sharing a smile or two; there is no way they can believe that this same child is suffering from intractable pain at 7 out of 10 on a pain scale. This is obviously a malingerer and very quickly a diagnosis is made, “psychosomatic!”
Lastly, it is important to note that CRPS is one of the few illnesses for which there is virtually no reliable diagnostic test. Complex Regional Pain Syndrome often starts from a minor injury or surgery, but that injury is usually long gone and well healed by the time the CRPS has set in. With Complex Regional Pain Syndrome, EMG’s, MRI’s, CAT scans, and X-rays are typically all negative. (Occasionally bone scans will reveal decreased bone density and this can help with a diagnosis). Because of this many physicians, with limited knowledge about CRPS, assume there is nothing physically wrong with the patient because testing keeps coming back negative. It is very common, at this point, for doctors to begin wondering if there is a psychosomatic component to the pain.
A couple of things come to mind when I think about this dilemma. First of all there is the obvious need for more awareness about Complex Regional Pain Syndrome amongst health care professionals and physicians world wide so that the signs and symptoms of this devastating disease can be more easily recognized. Second, although I understand how a physician must always keep his or her mind open to the possibility of psychological issues interfering when making an accurate diagnosis, I also feel strongly that it should never be assumed that a patient’s pain is not real. If a person is telling you they are in pain… they are usually in pain. I would hope that physicians would begin with this premise, stick with this premise and believe in their patients unless proven otherwise – lack of diagnostic testing does not prove otherwise. Fortunately there are many wonderful doctors out there who will go to the ends of the earth to help their patients (we were fortunate to have found a couple and I am extremely grateful for their care), but there are also far too many who somehow feel that there is an epidemic of psychiatric issues amongst their patients and pain is most definitely just the secondary symptom. These physicians often place a psychiatric label on the patient before an evaluation is even complete, causing unnecessary increased stress and suffering on the patient and family; not to mention months sometimes years of precious lost time.
There is a term for this in the medical profession called “cubby holing”. Sometimes physicians fall into the trap of categorizing patients into groups and basically place them into pre-set “cubbies” with pre-determined judgments. When my son Devin was being evaluated by one particular pain specialist, he quickly placed Devin into a nice little “cubby”- a young teen who must have too much stress at school and home, most likely problems with friendships and siblings and a need for secondary gain. He even insinuated that my husband and I must be having marital problems which was causing additional stress. Thus, I had fallen into a “cubby” of my own. It floored me at the time, for Devin had two adoring siblings, loads of friends, no stress at school and two parents who love each other very much. No matter how many times I tried to tell the doctor this reality, he kept saying, “Wendy, this is what all moms say to me”. Troubling to say the least, but a great example of a doctor who used “cubby holing”, perhaps without realizing it, to make nice, tidy pre-determined judgement about my son and I, leading to his pre-determined conclusion that Devin’s pain was psychosomatic.
So what does one do about this situation? How do you avoid being cast from one physician to the next being told, “Your pain isn’t real…Its all in your head.” My best advice is to trust your instincts. You know yourself and your child better than any physician who is just meeting you or your child for the first time. Move on immediately and find a physician who will work with you and help you find the right treatment for you or your child’s CRPS. Don’t get sucked into staying with a physician or health care worker who does not believe in you. There are good physicians out there and there are people who can help.
If you are having a hard time locating a physician or program in your area contact the Reflex Sympathetic Dystrophy Syndrome Association, RSDSA. Parents with children with CRPS, I strongly encourage you to contact The Children’s Hospital of Philadelphia’s Amplified Muskuloskeletal Pain Syndrome (AMPS) Program run by Dr. David Sherry.