The “O” Word


Hello Luvs,

I have just uploaded a video to my advocacy YouTube channel. I have called it “The “O” Word (The Opioid Issue)”,  It explains a lot about Chronic pain and the issue involving Opoids for the relief of chronic pain. After a pain patient has tried a good number of treatments and they have not worked out, then a patient should be able to make the choice WITH their pain management physician, to either take Opioids or not.  This would be in order to give them some semblence of a life outside of their bed or recliner.  The video is right here, below.  My YouTube Advocacy/Awareness channel is located at: http://www.youtube.com/Suzydukettes.

I don’t want to give too much away, but here is the video:

The “O” Word- The Opioid Issue

We ARE In The Room



If you visit the Emergency rooms in Michigan, you see and feel many horror stories.  I don’t visit the ER and have not since 2007, when I was diagnosed with CRPS.  I had chronic pain even before that, from several chronic pain issues and illnesses stemming from a car accident and other reasons. But the last time that I went, I was treated like a pariah because I was taking pain medication.  They never asked me about all of the different therapies and non-Opioid medications that I’ve tried.  They don’t know all that I’ve been through.  They also don’t even ask me if I’ve ever been addicted to anything in my life.  The answer would be “NO”. I’ve never smoked anything and I don’t even drink “once in awhile” socially, not ever!  Yet, the Dr.’s and nurses treat people that take small amounts of pain meds as if we are someone to be scorned.  The amount has gone down but it’s not ever going up.  It works for me and for about 25% of the chronic pain population. Only 1% of  legitimate chronic pain patients ever become addicted to pain medications given to them by a pain management physician.  For some people this is what works after numerous other medications and therapies have failed.

I want to share with you just an overview of something I read in a Detroit Newspaper article yesterday (Link to Detroit news article  .  This is what is happening in Michigan in 2017. I’m praying for change and I’m going to advocate to help the legitimate chronic pain patients. I have already written to and gotten a response from the other letter that I wrote to the White House and Governor Chris Christie.  All that I got in return was a fancy form letter from “The White House”.   I can’t give up.  I refuse to give up hope, without hope, we have nothing left.  We must not give up and we need to keep hope alive.

This is just the summary of what actually happened to a family in Michigan.  I read in our Detroit, MI newspaper recently, and it is just a summary:   “Over on a gurney, a woman screams out writhing from pain. A Dr. stands idly by, just watching a monitor. He stood away from her as she was doubled up in pain, screaming about pain in her abdomen.  Her husband walked in and saw this and he new about his wife’s chronic pain condition(s), but had never seen anything like this from her.  The Dr. was expressionless, as if she was not even in the room and as though she was a non-feeling “thing”, a non-being person with feelings and a soul”. Imagine if it was his wife, his mother or child? Would he still feel the same?

So moving on, …”as the husband approached this so called “Dr.”,  the physician was startled and reached out his hand to introduce himself. He said to the husband, “yes she’s “complaining” about pain. He said “we will “try” to address it. Next, he said something horrifying, but not new to our American chronic pain communities.  He said “addicts often come to the emergency room looking for opioids”.  The woman’s husband knew about her medical condition and he knew enough to realize that something must’ve gone terribly wrong after the nerve block procedure she’d had done earlier that day, while he was at work.  They’d been to Cleveland and Mayo clinics and even to the U of MI hospital. This poor woman had gone through numerous medical procedures and attempted over 40 medications. They finally had found a regimen that worked to relieve enough of her pain so that she had some semblance of a life now and then. The only effective regimen was very complicated but it included Opioids”.  The way she was treated just recently, in 2017 is barbaric to say the least.

This is happening not only here in Michigan, but all over the USA.  Just today, 9-17-17, I read an article that was sent to me through my email. The article written by Julie Mack in “MLive”, discusses many statistics about Michigan deaths from “overdose of Opioids, including Heroin”. Opioids for legitimate and suffering chronic pain patients and Heroin, should not even be compared in the same sentence; let alone included together in the same article showing numbers of deaths.  The article even states that “these numbers are based on death certificates and list only deaths that specify “Opioid and/or heroin” as a factor”.  I want people to see the difference here. Legitimate chronic pain patients who’ve been doing well, taking opioids, after trying many other methods to relieve their pain; are not even in the same same category as heroin addicts.  Unfortunately, from the death certificate, they just lump everyone into one category and that’s hurting the pain patients.  We are suffering due to the ignorance of certain Government officials and the paralyzing fear that has been put into our legitimate and caring Pain management physicians.

In Michigan, a bill was recently introduced into the House of Rep.  This HB 4601 would put absolute limits on the dosages that chronic pain patients may receive. The patient’s medical history, illness(es) or lack of any proof of abuse or addiction are suddenly irrelevant. The Government would be mandating that “no doctor may prescribe opioids to a chronic pain patient exceeding 100 morphine milligram equivalents per day.” No matter what! Oh my goodness, everyone’s bodies are different and dosages can affect people differently.  If this bill goes into law,  legitimate pain patients will be bedridden and writhing in pain.  Please help us and learn about this side of HB 4601. Our Michigan Government needs to step in now, to help other government leaders and those in Washington D.C., to understand this huge gap between pain patients and drug addicts. There are two distinct groups included in HB 4601, but we are being “lumped together” as one.

In Oakland County Michigan, the Board of Commissioners has taken a stand against this historically old proposal. They unanimously passed a resolution stating that 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 also advocated a balanced method “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary”.  Please help the chronic pain community. We are human beings and we deserve our rights and our lives protected by the state of Michigan and the USA government as well. Please don’t take the rights of our educated physicians away from the decision making process. Educate them more in the area of chronic pain management, but the doctor patient relationship should still stand.  Our Senators, Governors and even our President, need to be educated in this area.  They need to understand the differences between addiction and dependency; along with the difference between drug addicts versus legitimate chronic pain patients.

I implore you to help stop this in Michigan and everywhere. I understand that balance is hard, but we need to think of the real people that HB 4601 affects.  Slashing dosages of opioid pain medications or taking it completely away from people that it has been effectively helping is cruel and abusive. This is America! What is happening to us when the government steps in and takes away a doctors right to treat his patient effectively?  If we can focus more on the people, we would start tailoring laws to address societal harm and avoid legislative dragnets that sound good in headlines but bring danger and harm to too many  citizens. We need to do better for the legitimate chronic pain patients for whom all other methods have failed.

We ARE here, we ARE in the room.  Please join me in helping to make the government and elected official listen to our plea!

Excerpts taken from DetroitNews.com

9-12-17 “Opioids Treat Real Pain; Don’t Limit Drs”

     Dear Mr. President 


March 12, 2017

President Donald J. TrumpThe White House1600 Pennsylvania AveWashington, DC. 20500

Dear Mr. President,

My name is Suzanne Stewart and I urgently need your attention please, Mr. President. I’m so sorry for all that is happening these days that is making it so difficult for all of us and for you as the President. I know goodness will prevail. I need your help on behalf of millions of real and true Chronic Pain patients. Please don’t stop reading this letter now because of those words. For some reason they seem to make people nervous. Let me explain briefly, what I am asking from you.  Mr. President, so many chronic pain patients in these United States of America are really and truly in horrific pain on a daily basis. I live with a horrible nerve disease called “RSD/CRPS” and aka “Reflex Sympathetic Dystrophy” and “Complex Regional pain Syndrome”. It is #43 on the McGill pain index; only superseded by terminal cancer and about as painful as the amputation of a finger without anesthesia. There are many very real painful illnesses out there and I have several of them, following a car accident in 2002. A man ran through a red light and totaled not only my car but my body as well. I have had 8 surgeries and after the 7th, I was diagnosed with RSD/CRPS. In 2013, I was supposed to have a pacemaker replaced, but instead I ended up with a total pectoral muscle reconstruction surgery. The Dr. tried to head off “full body/systemic” CRPS, but it did not work for me. I now live with full body, systemic, CRPS disseminated and severe. I also have several herniated/bulging cervical and lumbar discs with Degenerative Disc Disease, Arnold Chiari Malformation I, with Chiari migraines and Polyneuropathy in Collagen Vascular Disease (which is equal to Ehler’s Danlos Syndrome type 4-Vascular, or EDS-4) and there’s more but I don’t want to belabor this subject.

There are many Americans who live with daily chronic pain illnesses and we implore you for help. The CDC and DEA and “Big Brother” Pharma companies are trying to “hurt” the American chronic pain people. We need your help and the help of Tom Price, the HHS person, who you chose because he would do a good job, right? Please help us, your pain community to not lose the medications that many need so badly. We seem to be losing our medications because of heroin addicts being “lumped together” with us. Every time a celebrity dies of an overdose, they blame it on the pain meds and not the misuse and abuse of pain medications along with the use of recreational street drugs. You are an NRA spokesperson and you believe in the constitutional right of the “right to bear arms”. Then you need to believe in the right of the established and true chronic pain patients, to have the right to take the appropriate pain medications that have been prescribed diligently by their Physicians and/or Pain Physicians. No Dr. should be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our Physicians are leaving in droves because of all of the “uproar” about an “Opioid epidemic”. Senators, Joe Manchin (D-WV), Amy Klobuchar (D-MN), Angus King (I-ME), Heidi Heitkamp (D-ND), Tammy Baldwin (D-WI), Bill Nelson (D-FL), Chris Murphy (D-CT), Elizabeth Warren, (D-MA), Maggie Hassan (D-NH), Jeanne Shaheen (D-NH) and Richard Blumenthal (D-CT) proposed a “Budgeting for Opioid Addiction Treatment Act” (aka “LifeBoat Act”), to force chronic pain patients pay a tax, called “the Lifeboat tax”. It would have meant that pain patients would have to pay .01 cent for each milligram of Opioid pain medication that they take on a daily basis! This money was then going to be used for addiction treatment centers! This is not right, just as that tax on medical devices was and is completely wrong and punishing people for being ill.
Mr. President, we are not addicts and we are not “addicted” to our medications. We only use them for pain control. If you ask most true chronic pain patients, they would tell you that they hate taking the medications and wish we did not have to depend on it. This is the key word, sir, and that is “dependent”! We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their drugs at any cost and looks forward to taking them because of the “high” they get. As pain patients who take our medications responsibly, we get some kind of relief from the daily chronic pain that we live with. Imagine that just taking a shower, takes so much out of you because of the pain? Just showering and possibly doing our hair and brushing our teeth makes it so that we cannot schedule anything else that day! We are “dependent” yes, but NOT “addicted” to our medications. We need the physician / patient relationship to choose what is necessary and best for our pain control. The P.R.O.P. Dr.’s who are against Opioids and others against them, are just misinformed and some want to make money off of us. Some of those against Opioids for pain control, don’t want us to take them because they own treatment centers. They get money from chronic pain patients who are then treated as “addicts”. Some pain patients go there because its a last resort and nobody will help anymore. So many Dr’s are leaving and afraid because they aren’t able to prescribe anymore and not even for the true persons living with real and true pain on a daily basis.
Mr. President, please help us. I understand there are people who die from overdoses. But those people need help with depression maybe? They are fearful that the life that they have known with a little bit of pain control from the Opioids for years, is going to or has been ripped away from them? People are being told that they will have to go to the Dr or the pharmacy every 5 days in order to get a prescription for pain medications. Well that is just ludicrous because most of us can’t even drive or drive very far. We don’t feel well enough to get out and go to the Dr’s office every 5 days. Would they ask a Diabetic to do that? NO! They would not do that to a High blood pressure patient or a heart patient either. I take Beta Blockers and I cannot go off of them abruptly, or I could die or have a heart attack. People are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and where they are known and believed. But because of this “fake fear” in the people and the government right now, Dr’s are taking away the little bit of life that some have left by taking the pain meds away.
I am an Ambassador for the U.S. Pain Foundation, sir; and I am a patient health advocate. I do public speaking, write for the National Pain Report and I am a patient leader for WEGO health. I am completely disabled and depending on the day, I use a wheelchair, walker, motorized scooter or a cane. I described several of my health issues above, but there are more, in that I had a CVA in 2006 and an M.I. in 2005. My pain is much lessened due to the medication that I take. I have been living with several high chronic pain illnesses since 2002. I’ve tried so many different medications and many other treatment modalities. I also have an Immune deficiency illness that prevents me from being a candidate for a Spinal cord stimulator or a intrathecal pain pump as well. I don’t think anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when a pill with little side effects could help them so much. But you see, the money is in the surgeries and the Spinal cord stimulators and pain pumps. Mr. President, I am imploring you to help me and the 100 million other chronic pain patients in the USA, who are diligent and who take the medications responsibly. Please help us to be allowed to continue our pain medication regiment. The only thing that these proposed strict rules will do; is to turn chronic pain patients to the streets and then many more will die from getting the wrong kind of pain medications mixed with “who knows what”? Its just as the NRA says that the “bad guys will still have guns” if you take the guns away and make them illegal. The good pain patients who are left with no other choice; I feel, will be desperate. I’m begging you sir, please read my letter and please talk to me if you’d like. I’ll do anything to help my fellow pain warriors and myself. We need your help to understand that we are “chronic pain patients” and not “addicts”! We are just real people with true high pain illnesses. Please have Mr. Price to talk to pain patients like me and listen to the U.S. Pain Foundation’s ideas. We believe that something needs to be done. I don’t mind if they make medications that cannot be crushed, melted or changed in any way. That would help to keep the drug addicts from melting or chewing it in order to get high. But please see the difference between pain patients and drug addicts. Help us, the true chronic pain patients not lose our medications that give us some semblance of a life with our families.
Sincerely,
Suzanne Stewart

Ambassador, MI- U.S. Pain Foundation Author/Blogger, Patient Mentor RSDSA, Patient Advocate, Patient Leader WEGO Health

CC: Tom Price, Health and Human Services 200 Independence Ave SW,           Washington, DC. 20201