I Cannot Do Everything, But I Can Do Something

I Cannot Do Everything, But I Can Do Something

By Suzanne Stewart.

Last summer, I read an article in a Michigan newspaper that explained how a husband had gone to the emergency room of a hospital, to find his wife (then girlfriend) on a gurney, writhing in pain, while a physician stood by watching monitors. The emergency room physicians had “marked her as a drug addict”, before knowing any of her history or taking the necessary steps to find out. The Dr. told her husband that his wife was “complaining” about pain. Then in his next sentence, the Dr. said that “addicts often come to the emergency room looking for opioids”. The husband was very upset by this because his wife was not normally a person who “complains” often. He knew she’s had a “nerve block” procedure that day and something must have gone wrong. She has had damaged nerves in her back since a skiing accident long ago. She had had tried over 40 medications and a number of procedures. The only thing that had helped this chronic pain patient who was lying there in horrific pain, was a “complicated treatment plan, which included opioids”. The emergency room physician finally relented and gave her just a fraction of her regular dosage, but this was at least enough to get her out of there and taken home.

Suzanne Stewart

Ask yourself this: What if this woman hadn’t had someone there to advocate with the doctor for her?

I was upset by this story and it stirred something inside of me. Not only does it tear me up inside to hear stories of others being treated badly, but also, I am a chronic pain patient. I had already written letters to the President of the United States, the head of Health and Human Services, to my two Senators, my Governor & Lieutenant Governor. I wrote about the under treatment and loss of treatment to the chronic pain community since the CDC guidelines were revealed and then used as if they were “law” of the land.

I had found out about a new law, Michigan HB-4601 was going to become a law in the Summer of 2018, if I did not try to do something to change it. I decided to write a “plea for the chronic pain community” a bit closer to home. I sent a letter to the state representative for my district, Jeff Noble. Instead of the regular “form letter”, I actually received a note from him; asking me “if there was anything he could do”? He told me to contact him, “if I had any questions” and so I did. I asked if he would meet and speak with me for a few moments. Stated in that bill, was a 100MME ceiling limit for all chronic pain patients. Mixed into that bill, were new rules about acute pain. There was a 7-day prescription limit & persons had to physically go into the physician’s office after the 7 days were up; and then go to the pharmacy to get the new script if needed.

I went to my meeting with my representative with confidence, kindness and some research that I had done. Human beings metabolize medications differently, as do various illnesses. I spoke to him about the HB-4601 and I told him my own story. He saw a person in chronic pain and I hoped after meeting me he could put a face to this issue afterwards.

At first, he was taken aback that someone could be on a normal dosage of Opioid pain medication and not be groggy or sleepy or “high”. He told me that he had not thought about the difference between dependency and addiction. We had a very nice conversation and then we went our separate ways.

Afterwards, I sent him Kate Nicholson’s Ted Talk and the information from George Knapp’s video about opioids. Whenever something that might help the pleas of the chronic pain community became available; I would send it to him.

It may have helped.

On December 28, 2017, Michigan’s Governor, Rick Snyder signed into Law, SB-027. That Senate Bill which passed, is now Public Act 251 of 17. In researching that law, I found that there is allowed a partial fill of a prescription for acute pain. It limits a first prescription to 7 days and then a physician can verbally call in to the pharmacy or fax a subsequent prescription for acute pain, if needed. This is good news for the chronic pain community of Michigan.

The board ultimately passed a resolution that found HB 4601 “infringes on a doctor’s ability to care for patients by substituting the Legislature’s opinion for the opinion of individual medical professionals.” The board further advocated a balanced approach “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary.”

Government can and must think about and help to resolve the opioid epidemic. Too many people are dying from the abuse of painkillers. But more and more they are realizing that the problem is not the prescription pain medications given to legitimate chronic pain patients; but illegal drugs are. We need to address this but at the same time we should not have to sacrifice chronic pain patients lives in order to save the drug addicted persons.

I accomplished most everything that I have done, from the comfort of my own home and even my recliner. The only time that I had to go out of the house for any of this, was when I met with Representative Noble in early September 2017. He met with me very close to my home because I’m unable to drive more than a couple of miles for “personal errands’. We met in a coffee shop and had a very real conversation. We must let our stories be told and our faces be seen. Our government leaders need to hear true stories and see that we are real people who are suffering and who can and will be affected by their choices. In the words of my personal hero, Helen Keller, I say this: “I am only one, but still I am 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.”

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. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of 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. You can follow her here: TearsofTruth.com

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Authored by: Suzanne Stewart

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I undefstand that medicare is federal the point I was trying to make is this the mi. legestration has made it impossiable to use my medicare how I got caught up in this is unbelinable I talked to my poloticians they told me they need a standing dr. to get my records my dr abandoned mr they say get a lawyer look all I need is treat ment but not getting any help any where I guees I do not exsite after 30yrs. they will be right my whole being has revolted with no end in sight but one looks better every day thess days

Hello To Joe Caralon in MI; Medicare & any kind of “National” health care, would have nothing to do with Michigan in all honesty. That would be Federal government not state. Just in regards to your question. Thank you

Kel b

Great info Suzanne! Thank you again for all you do!!
I truly believe we all need to meet our reps face to face, the more the better. Most reps have multiple offices throughout the state they represent. Its part of their job, they work for us, they represent us. If they don’t know the facts we need to share the facts. They don’t know anymore than the average citizen watching the nightly news! We need to share OUR info with them AND THE NIGHTLY NEWS.

Reporters will come to you, invite them over! Most stations have investigative reporters on “your side” segments, etc etc.

They all reported on the overdoses, info from DEA, Sessions, Kolodyn, police, when do we get to be heard?? Now is the time!! Everyone together all across the country, that would really make it interesting! They may keep you off camera if you request it for those of you who are too shy. Email, call, facebook multiple reporters everyday, someone will respond. .
If you are near me and want a ride to see your representative ill give you a ride!!

Thank you for sharing your story and for working to make sure chronic pain patients are not treated as addicts. I’ve been with my Primary Doctor since 2015 I had finally found a doctor that I trusted and that listened and trusted me. Because this opioid epidemic which I don’t believe should effect real patient’s and there doctor’s because it is really the drugs that are coming from illegal places .In my thoughts this is a heroin epidemic. Drug dealers got their hand’s on opioids and are the one’s killing people not our doctor’s. To get back to what I was saying is that I have had the same Doctor since 2015 and the same pharmacy since 2014. Now my doctor that I trusted with my care is sending me to a pain clinic I knew it was coming but wish that it didn’t have to as does she. When you have severe chronic pain it is hard to find a doctor you can trust and that listens now I have to start with another in hopes they are as caring as she has been. At my last appointment she warned me to not get upset but that they will look at me as an addict and to just do as they say and jump through their hoops. She said she would write a letter on my behalf but to remember how strong I am and that I have tried everything including pain rehabilitation finishing all the programs they asked of me. So I guess I understand why she fears continuing with my pain management care but I don’t think that I should be looked at like I’m an addict. I’m glad she warned but wish it could be different and I could stay with the doctor I trust who knows me and knows my needs and never looks at me with judgement.

So once again, those who are doing illegal activities make victims of the innocent and the responsible. If one cannot trust the doctors to make medical decisions, why would I trust a non medical, non professional on medical care, a.k.a. the government, to decide what treatment plan is right for my needs?

Thank You

Kathleen C Harrington

After reading these horriffic stories I realize that as a chronic pain patient for 30 years I have been lucky. I have only had one dose of 1 medication taken from me, and my muscle relaxer is gone due to my rx insurance writing a letter to my PCP. Apparently the street pill poppers and junkies like to take my muscle relaxer, Soma, with zanax and oxy for a ‘great buzz’ they now call The Holy Trinity. I had neck injury in 1974 and it has gotten worse as I have gotten older and have many issues with my spine. My cervical spine is crumbling and surgery scares me. I have had lumbar surgery, finally, after suffering with nerve pain so bad my hair was falling out. Not to mention the increase of lines of pain and suffering on my face. At no time was a referall given to me or an order for an MRI to see why I was in so much pain. Finally I had to do it myself. I found an Ortho doc who told me my left hip was perfect, go see this neurologist. I did and thank God, as I was close to suicide. He found spinal stenosis like he had never seen in his 30 year practice. At L2-3 my spinal canal was almost completely blocked due to a disc that had ruptured. He actually asked me how I was still living with this. Never was I given anything for the nerve pain. I take 2 pain meds and no pain med in this world will take care of nerve pain. Again, I had to ask for some Gapapentin and I only got that weeks before my surgery. My Neuro apologized as he thought I was for sure given this medication.
What ever happened to the original fight of getting HEROIN off the streets? Pain patients are much easier to find and almost kill by taking their meds away. All the news shows showing heroin addicts nodded off, possibly dead, at traffic lights with their small kids in the car has been forgotten. They cannot stop heroin from hitting the streets and don’t try. They say they need more money to fight this problem. NO, just do the job you took an oath to do as law enforcement. It is apalling that junkies have been and always will be able to call their dealers for a fix, while honest cpp just wanting a better quality of life are writhing in pain contemplating suicide. Thank you for fighting for us Suzanne, I live in Michigan as well…now I know why my meds are not gone.

Hello Everyone! Thank you for your kindness and kind words. I promise you that I don’t do all of this just for me. I do it for all of us and for each of you. For Lori T., I’m so sorry, I was hoping this story would give you & others hope. That your day might be a bit brighter knowing that someone cares. For everyone, thank you so much as I have tears streaming down my face from the kindness that has been shown to me here today, in these comments. You know, I was, and always will be a part of the wonderful and caring, supportive Us Pain Foundation family; as long as they’ll have me! They are supportive of everyone and they have all kinds of help available if you just go to the website and look for it (USPainfoundation.org) . There is a free webinar re: insurance help, and many more like that one! We are trying to help get “The Opioids, Stop Pain Initiatve Act” passed. It’s for more research to be done with Chronic pain and more! We have a 2-page article for all pain patients who have been under treated or un-treated. It tells you what you can do and who you can call etc.! I am going to be taking some of these stories without your names of course! I am going to be writing a story about all of you! It will be on My blog tearsoftruth.com, in the near future! I’m so sorry for all of you.

In response to Ann Beauregard’s comment, I also was left high and dry several years ago, when my wonderful doctor (GP) who treated my chronic pain of many years from the onset, was one day just GONE. He treated many pain patients, probably was the best suited at the clinic, or actually had the compassion to help those suffering. He had been receiving “flack” for prescribing pain meds and was told to cut back. He never cut mine back because he knew I needed it. Well, they probably had enough of his noncompliance or he had enough of their “requirements.” They would not tell us where he was, what happened, and there was not a doctor who felt comfortable writing my Fentanyl perscription. It was a very pathetic situation they left us all in. Finally, someone wrote the script, and they sent me to a pain clinic. My meds were also cut down because the dose is only now for cancer patients. People are not all the same. The pain levels between individuals is varied. It is a sad situation we are in. I am doing what I can to help and will continue to do so.

our government in mi. has made it imposable to even use medicare dr. are to afraid to take paitents what about national health care will that ins just pick an choose what to treat?

Lori T.

A few weeks ago I subscribed to this site and have been reading all of the commentary. With each post I read where good folks have been tormented by their state laws and the medical profession, I come away with tears streaming down my face, a knot in my gut and feelings of sorrow and dismay at what I call one of the biggest witch hunts in our nation. What is happening to chronic pain patients is absolutely horrific. I too am a chronic pain patient who has to take opiods for Crohn’s disease. My morphine dose that I take per day is quite substantial. I have a great pain management doctor that I have been with for many years. He is very sympathetic to my plight and continues to prescribe medication to keep me functional with semblance of life. I follow all the rules, drug testing, signed the chronic pain document stating that he alone would prescribe my medication and that I use only one pharmacy (the same pharmacy) to get my medications. But what will happen to me when he retires or God forbid, passes away? Living rural I would be in a world of hurt. Hearing everybody else’s plight with having their pain medications cut in half or completely stopped is absolutely heartbreaking. I am a retired registered nurse. When I practiced medicine in many hospitals and nursing homes across the nation during my 30 plus years of nursing, I made it a priority to administer pain medications within a three minute timeframe to patients who were hurting from post surgical procedures and the like. I found that by staying on top of the pain issue, my patients recovered better and were able to go home earlier. That was the general position that most old nurses of my time held. Today, there seems to be a new breed of medical professionals. Mocking and labeling people as being addicts or drug seekers seems to be the rule these days. It seems like nobody cares anymore. This is very unfortunate. The profession I spent many years in college to earn has now gone to the birds because of this so called opiod epidemic. This new breed of medical practitioners seems to have no compassion for their patients. Many have the attitude that everyone who walks through the door has a drug seeking agenda. I truly think these people are woefully misinformed and afraid or unwilling to fight for their patients needs. Why practice medicine in any capacity if you have no intentions of helping your patients. Pain in any form is a huge driver in seeking medical assistance and opiods have a place in medical care. What we as chronic pain sufferers need is a Bill of Rights to to be drafted and passed in every state if not nationally. This would protect doctors, nurses and pharmacists as well as the chronic pain patients. It would give reasonable guidelines for everyone to follow. We need to band together and… Read more »

Great news, thank you for all you do, it’s been a long hard year to get where we are. I wish you all the luck. I want to give up and then I hear things might get better so I’ll try to hang tight. I’ll keep sending letters and using resist bot till we get the answers we need.

Ann Beauregard

Thank you for all you do for all of us. I wish more of our representatives were as open & available to their constituents. But most of all I really wish the medical community would fight for their patients. But I guess they have learned by seeing the bullseyes placed on colleagues, I had an incredible Pain Provider for years, who truly cared about the wellbeing of her parents. Well it got her under investigation, losing the ability to write any prescriptions related to Pain, while conducting their witch hunt. Being a pain Dr, who ran a 1 Dr practice, now had patients left high and dry, many went into severe withdrawals. Thank God my primary was willing to step up till we located a new provider. Needless to say meds were cut more than half. It took 8-9 months to find a clinic to take me…1hr away, even though there are at least 10-15 places within 20 min. But because of news that travels about others, all her pts were looked upon as drug seekers. After everything they found nothing! But she closed her practice and went back to Social Work! My new Pain dr cut all meds to what’s allowed for Pain pts, except for terminal cancer pts, I told her that’s great but what about those non terminal or cancer patients who want to LIVE.

Carole Porter

Thank you for all you do!

Susan swack

I didn’t know that there was anyone in the world advocating for me (acute pain suffer). I want to thank you Suzanne. A friend sent me this info. I live in tn. And they are taking my pain med doses so far down I’m bed ridden several days a week now sometimes everyday. I just want you to know what a good thing u did. I don’t know if the state of tn. Will ever get on board. If I tell my pain doctor I’m hurting badly then all they say is well we need to lower your dose. When they have lowered it so much I no longer have any quality of life.

Lori

Bravo, Susan! Proud of you!

ruth white

Thank you, Suzanne, you encourage others to speak up, not give up. Remaining silent increases suffering. Those that are capable must ACT for those unable to stop the suffering of millions of CP patients. “Pain is inevitable; suffering is optional”.

Lora

Suzanne, thank you so much for being such a strong advocate for all of us with chronic pain!! I really appreciate everything you do that will help so many people across the country.

Jill Slovacek

THANK YOU ! We need to MEET face to face with our elected officials or, the health care liaison for their office! Be the “unlikely who will do the impossible” ( former President Hinckly . of LDS church )

Barbara W

That is excellent news & a great example of what we all can do to help! Thank you Suzanne u are such an inspiration to all of us with all of your writings from the past as well!

Deborah Fochler

Thank you for what you have done. I am going to tell a story now that I havent told anyone because it makes me so angry I cant help but cry. I have been on morphine since 1990 when I suffered multiple spinal fractures. I was on heparin at the time and it actually damaged my spinal cord. I underwent multiple surgeries. After he fourth surgery failed my doctor told me it was time to stop. We discussed the pain and the fact it would never go away and I had to learn to live with it – some way. The morphine gave me my life back, I could work part time, enjoy my family, and even take a vacation. I have never overdosed, never taken more than prescribed and alway always follow the rules. Last year I fell which I do often but this time was face down on pavement. I had a broken nose, skull fracture, broken arm, broken wrist and broken knee. Someone called 911 and they hauled me off to the ER. She asked me to take a drug test – sure why not. She came back and said they wanted to admit me. She asked if I had any medications in my purse. I told her I did because I was returning from Maryland. She said they needed to take them and would give me my own meds. I trusted her. She they took me upstairs to a room. Did xray after xray after xray. I was hurting. She said my oxygen levels were low and my blood pressure high. As the night went on the pain got worse and worse. She supposedly gave me my morphine. The next morning I couldnt get out of bed I hurt so bad. Couldnt eat. Just laid there with tears running down my face. The nurses kept checking on me. One said she was going to try to get me some more pain meds. Came back and said the doctor said no. Next day I am in agony, throwing up and by now I cant help but moan and cry. My third day with no food. The nurses are concerned at this point. I can hear them talking outside my sroom. I hear one say “This is bullshit. When does she get off” She then comes in and tells me to hold on onto another doctor comes on duty for the weekend.I finally get some morphine in my iv. What happened – she gave me NO pain meds while I was in the hospital. She lied to me. One of the nurses told me later that she said she was going to prove that I didnt need morphine. Going to see how much “that Bit*h can hurt”. The nurse who told me was a friend of my primary care physician. She was worried and I told her I wouldnt tell anyone she told me. I checked myself out of the hospital against advice. For this reason above, I… Read more »

Necia Saltmarsh

I wrote a letter to the editor, which caught the attention of a reporter. He did a story about the many problems I have encountered at pain clinics. Believe it or not. we made front page headline news. I sent this to my rep, as well. Repeated emails have been ignored. Everyone has to start screaming. This is abuse, plain and simple. They wouldn’t do this to a dog’ but they are trying to sweep us under the rug. BTW, my crime is having progressive MS and severe Fibro.

I am a chronic pain patient, I was just totally cut off my fentanyl. I have been on it for 15 years. I am going to be going through major withdrawals possibly I might die, Im so sick I can barely move. Please PRAY. Without my meds I cannot work. I am worthless,My Dr has maxed out as far as appeals. He was trying different meds to see if they would work so I could take less, Now I am going to die, What o I do, I cant fight Im to ill??

Lisa Murphy

I applaud your efforts and persistence! Thank you for sharing your experience and writing about it. I too, have written my Senators,etc. I think we all need to band together and at least try to do One thing to advocate for ourselves. These new laws are hurting chronic pain care, and we need to have our voices heard. We should not have to suffer with intractable pain, due to other people who have a different disease of addiction.
Sincerely,
A Chronic Pain Patient of 26years
Lisa Murphy

Thank you! This article makes it so clear that this government needs to examine with intelligence their “opioid epidemic” policies in the same manner as your Michigan lawmakers did. They need to stop punishing severe pain sufferers by restricting availability of opioids and realize that these medications are absolutely needed in order for them to live a semi-normal life. If they would only take the time to read the medical data on pain conditions such as CRPS, RSD and other severe 24-7 incurable pain conditions they would hopefully learn to temper their fanaticism for passing unjust regulations that make it almost impossible for pain suffers to get the medication they need. If they would only take the time to listen to people such as yourself and realize that these folks are not addicts, substance abusers or even chemical copers and adjust their new regulations accordingly. This article helps me be a little more hopeful that more lawmakers in this country will wake up to the harm they are doing and become sympathetic to the pain suffers point of view. If it is appropriate, I would like to make copies of your article and send it out with yet another letter from myself to politicians ~ thank you.

Caryn Abrams A.T.I.P. Member

Great job. There is s pattern of abuse, indertreameat, assumption of addition and plan of prejudice based on the ignorant information Kolodney and his people are infecting hospital care with. He is on the lecture circuit going to major Hospital all over the Country telling them that Pain Patients are addicts and it’s toxic. And he is being paid well to spin his garbage.
It happened to me in New Jersey and I am fighting back from being labeled not only an addict when I went in very very sick and the hospital brought in an addition specialist pit bull to slander and bully me. It’s a horrible story of abuse and I’m fighting back. Keep up the good work as this Attack on Pain Patients must stop now!
I stayed home WAY too long VERY VERY Sick because I knew they were going to do something bad because I’m in pain meds under care of a pain mgmt contract care dr. And I was right. Should we die at home because we get ill and need medical care and are being abused at hospitals?
I think not therefore we must fight even when we’re sick. Always bring your records your Pain Drs contact info and like me, my gastro dr was there and they still snuck in a shrink who had an agenda to label me and cause me harm!!
Must must stop this [edit] now!!
Good job on your behalf. Keep it going!!
Caryn

Great work,thr problem I have is why are we having to educate the people running our government. It doesn’t make sense think about it they’re the ones making the laws that are ruling our health and they don’t know the first thing about pain or chronic pain your conversation with your state representative shouldn’t have been educating him it should have been him understanding that yes there are chronic pain patients and there are dope fiends out there. Obviously there’s a total total disconnect between the government that’s trying to run what are doctors are supposed to be doing and what’s going on if they don’t understand the difference between dope fiends and chronic pain patients then they need to sit down with somebody other than us from the get-go and find out doctors surgeons orthopedic surgeons this is what I don’t like idiots riding laws and telling people like are doctors emergency rooms nurses pharmacies what to do with us when they don’t even know what the hell needs to be done themselves something has to change and it has to come from the higher-ups!

Carla

Suzanne, Thank you for sharing this information, the article and everything You are doing for all of us chronic pain sufferers. I am one of the people you mentioned in your article (not having anyone to advocate for me if/when I need to go to the hospital, doctors etc) my husband of 18yrs left me aprx 6 months ago and I still don’t know how I am alive and dealing with that, losing my home, personal belongings during the time my doctor wants/needs to take my pain meds away after being on them for over 30yrs! I pray this so called “Epidemic” gets resolved soon…I really don’t know how much more I can take! Thank you again and I will be sharing your article with my Chronic Pain friends and Groups because they need to know we do have some great people advocating for us and I hope it will give them more knowledge on who, what, where and how they can maybe do something within their means to help in this matter to make a change in this terrible predicament Chronic Pain Patients are in! Thanks again!

Cherie Hunt

Most doctors now are labeling patients as addicts. I know I am speaking from experience also. For five years I was viewed as a hypochondriac. Until 11/22/17 I was diagnosed with SLE. Now that I have been diagnosed I am labeled as a drug seeker. I just left a doctor and reported him to the medical board. He would give me a drug test the same time as my primary doctor. Both doctors used the same lab. First strike he said you have amphetamine in your system . In response I said to you have my information there if you would look in see my primary doctor writes me ADHD medicine. I told him as that you trying to play me like a dummy but I know that all my doctors are connected. You have my information right there. Last strike he said you have Fentanyl in your system. I called him a liar to his face. At the time I did not know that a shot of Kenalog has Fentanyl in it. My primary doctor gives me a shot of Kenalog everytime I have a flare. At the time I did not know that Kenalog has Fentanyl in it. Since this incident I am at a new pain doctor. Still being viewed as a drug seeker. I recently emailed my governor. All I’m asking is treat my chronic pain. Don’t treat me no different than anyone else. I have also been diagnosed with fibromyalgia and osteoarthritis. I just thought I would share my story.

Maureen M.

Suzaane, as always…great writings! I think it is amazing that your Rep took time to meet with you, let alone outside of his office! Kudos to him!
Thank you for continuing to be a strong advocate for our community.
I wish you a ‘feel better’ kind of day!

Excellent Article – always on a role advocating for so many across the country – so proud of you and all the work you do! It is amazing how one voice can make changes and educate.