Without Our Consent


Hello Everyone!

First, please watch this 1 minute video….(then return to this page in order to watch the rest of these videos. They will explain what is truly happening to our most vulnerable, chronically ill and disabled pain community members):

The Link to my Video “They Are Watching”

*******************************I APOLOGIZE BUT ONLY THIS 1st VIDEO & “FIGHT FOR OUR LIVES”, ARE AVAILABLE AT THE MOMENT. I WILL TRY TO MAKE THE OTHERS AVAILABLE AGAIN ASAP. *************************

I wanted to give you a “one -stop” place to get a few very informative videos regarding the pain community and the opioid hysteria. Just below is a video titled “Without Our Consent”. It is about how the pain community is being used as human subjects of a government experiment without our consent!

NOTE: **Please excuse the 2 small Captioning mistakes. I don’t hear or see well. I did the best I could do to get you the information. Most persons, whether they’re Deaf, Hard of hearing or hearing; wont mind too much if it says “vide” instead of “video” at 1:30 minutes into this video. I’m sure everyone can understand the meaning.

**Also at 3:30 minutes in, the Captioning failed to post. The information I added did not post for the CC. It’s supposed to read “by myself, I did it”….(it states “Please input message”)

I apologize for these 2 small mistakes but I do not feel well enough to redo the entire video bcz of this. Please feel free to remake this video and I’ll gladly remove this one. I thought that the chronic pain community should have this information. Then they can decide for themselves what they want to do with it. The video itself is totally fine so unless you’re deaf/hoh, you shouldn’t need the CC. I’ve written my corrections here for My Deaf/hoh community and they will forgive me for not being perfect.

**The Chronic pain community has been studied like lab rats and left to suffer needlessly all for filling the wallets of our Government bureaucrats

Link to my Video “Without Our Consent”

Next, I have this video that I made just recently. I titled it “Fight For Our Lives”. I had asked the pain community to send me videos of themselves. I wanted their stories about losing pain medications after having done very well for many years. Look carefully for a woman named “Dawn Anderson”. She submitted her story to me. She was doing well for years and then list her medications. She has just recently passed away! Dawn died writhing in pain daily! She was pleading for help! Nobody listened. But I did and I tried to help! But nobody who could truly help her, did that! She’s dead now and it is very sad because it may have been easily avoided, had she been getting pain relief. Here’s the video that I made. This is the short version of several pain patients stories . This video contains several patient advocate stories. I did my best to do the things that I’m able to do..

Here’s the link to “Fight For Our Lives”

Next, I’ve posted here for you, the link to my video, “Pain, Politics & Suboxone”, about Suboxone & Bupenorphrine. It explains how these medications are not for chronic pain patients. These medications are for addicts and have a very low analgesic effects.

Here’s the Link to: “Pain, Politics & Suboxone”

Lastly, this video is from just after the “CNN Town Hall Meeting With Anderson Cooper”. They shut out the entire pain community and did not give our representatives a chance to speak out! The got it entirely wrong! Here you go, watch this:

Here’s the link to this last video: “Let The Chronic Pain Voices Be Heard”

I hope this list of videos helps you get as much information as possible. Please note that each video is closed captioned for my Deaf/Hard of Hearing community.

*******************************PLEASE SEE THE PHOTO OF THE PRESS RELEASE BELOW. This is where the information came from regarding the “prescription writing for opioids being at a 25 year all-time low”

Thank you so much!

Giving PAIN To Help With Pain?


I read this article called “How to Ease pain without Opioids? Specialists are finding Ways” by Steve Dorfman from Palm Beach Post, a staff writer. He is writing about a clinic that opened in Florida. We all know that Florida is the very worst or one of the worst states to be living with chronic pain and residing in. Does this make any sense at all to the chronic pain patients or any sane individual? The interventions that are being outlined in this article are tortuous to say the least! 

This Dr. Tapia outlines several different approaches to use instead of narcotics or opioids. Why aren’t sick people who are legitimately living with daily chronic pain, allowed to take a pill like everyone else who is really sick? It has NOT been proven that cancer pain is worse than any other form of chronic pain. The CDC rebuked Andrew Kolodny when he tried to use that line on them. It just is not true. I have two family members with cancer and they told me themselves that their pain is “not that bad” and definitely not as bad as many other chronic pain illnesses. At least with most other illnesses there is an end in sight or a treatment that helps but now the chronic pain population are being forced to do painful, torturous and just plain “stupid” things that are supposed to “trick our minds into believing that we feel better”. That is my opinion!

First of all, people who live with daily intractable pain, do not get high, do not abuse their pain medications and do not do anything they should not do with their medications. They use them for pain relief only! The chronic pain population should not be made to continually suffer and die because there are “bad” people who brought “bad” drugs like cara fentanyl over from South America and elsewhere! This is insane! If someone starts abusing insulin to lose weight and then people die, will they start taking insulin away from the Diabetics in America? Guess what? I bet you that won’t ever happen!

This Dr.  In Florida has several approaches.  He and other pain Dr’s who are now “afraid” to prescribe medication that can easily help their patients without giving them more pain on top of the chronic pain they are enduring; are calling this “Interventional Pain medicine”.  They are doing some things like this:  more injections (that sounds fun), nerve blocks (yep they hurt worse and then maybe help for a month, but guess what?? You cannot do that forever!!!), and what they like to call “minimally invasive outpatient surgeries.  This is ludicrous and crazy!

There is this method they are doing where they take your red blood cells out (ouch) and they “spin them around in a special centrifuge machine that separates and concentrates platelets and growth factors, and then it is injected” …get this…this is the “good part”…”they INJECT IT INTO THE PAINFUL AREAS!” That sounds like something I want to try, with systemic  CRPS….NOT… I’ve heard that this may help some forms of Arthritis! But what about all of the other horribly painful illnesses Like Arachnoiditis, CRPS, EDS and many others??? Then there is a high intensity laser therapy “believed by some to promote tissue healing”….yea…sorry…load of crap!  They also have this recently cleared by the FDA device called NIP procedure (NIP stands for noninvasive pain). They use a microchip and acupuncture needles, placed “strategically behind the patients ear”.  This technology transmits a flow of signals to the patient for as long as they are “wearing” the device (usually 4 or 5 days). Well, Ok but what about the rest of your life after 4 or 5 days??

I am talking about intractable pain, chronic pain and pain that will most likely never disappear. These kinds of treatments are asinine for these kinds of chronic pain patients. I’m sorry but taking a pill a couple times a day, that has absolutely no side effects and does not harm me in any way, is a much easier approach for those already living with daily struggles of constant pain that will not eventually disappear.  These “pain interventionists” are just making a lot of money and taking advantage of the chronic pain population. I’m sorry but you cannot just “think this kind of pain away”. You cannot wear a couple of needles behind your ear and watch it “Poof” away! These are insane ideas from an insane culture who are being hysterical about opioids. Opioids have a place in the chronic and acute pain world.  We need palliative of life care. We aren’t going to live as long as the “normal” person anyways. I am not an addict. I am NOT afraid of losing my pain meds, I’m more afraid of feeling the pain when it is not controlled!

My specialist physician told me the other day that “unfortunately, I am collateral damage to the hysteria that is taking place in our society today”. He’s 100% correct and I will probably not live through this again. I lost my physician 3 years ago. One day he was there and he was my Dr. For about 15 yrs. The next day he was gone without an explanation. I was caught going off meds for pain after 12 years “cold turkey”. I was very sick and my blood pressure went high, my blood sugar went high and it was torturous. Last Monday, I was told that my 100 fentanyl patch was being taken away. No tapering, just “one more month to help me get ready psychologically”. What the heck is that about? The safe way is to wean someone 10% every couple of weeks or so. On August 10th I will not be given the patch again. I was offered some other oral extended relief medication but I have Gastroparesis. In what lifetime doesn’t a pain Dr. Or any Dr.  know that Oral opioids, especially extended ones, are not recommended for people who live with Gastroparesis (another painful condition)?? No one cares? I’ve written to my Senator, the president, my state rep and I’ve made videos and blog posts and news articles. Nobody cares about us anymore. Nobody cares about my life or my quality of life any longer? What happened to these United States of America? 

(My information is from http://www.palmbeachpost.com May 21st, 2018 *Please go over there and post comments about your feelings regarding this insanity)

     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

My Letter To CNN


img_7340

Tonight I watched a CNN “Town Hall Meeting”, with Anderson Cooper, Dr. Sanjay Gupta, Dr. Leana Wen and Dr. Drew . This was nothing like what a “Town Hall Meeting”  is supposed to resemble! It was “one-sided” ……..and there was no one sticking up for the rights of chronic pain patients. Oh,I know that they were there. They were in the audience just hoping and waiting for their chance to get out “our” thoughts on the subject of Opioids. They’re  being slowly taken from us as we writhe in pain and the so called “Dr’s against opioids” want us to “think our pain away”!  Better yet, why not have a CRPS patient with Allodynia (hypersensinsitive to touch)/ pain patient, get a massage??  Once & for all,  an “addict” is not the same as a chronic pain patient!  Pain patients are not addicts. We do not “crave” our pain medications. We do not have overwhelming thoughts about our meds and we do NOT get any kind of “high” by taking our prescribed dosages in a responsible manner!  This is what I’d like to say to the producers, Dr’s & Mr. Cooper, at CNN!  Those persons who hijacked what was supposed to be a “Town Hall meeting”. But in real such arenas, you get to hear from both sides. This meeting was more like a documentary against the use of Opioids!  At one point Anderson Cooper allows a long time Opioid user, who’s a chronic pain patient, to take the microphone. She says that she’s been having a better life while taking the Opioids responsibly for over 20 years! She was “cut off” mid sentence by Dr. Drew, who tells her and everyone else that “she us NOT the Norm”!  It got worse and more against “us”/ the people living with chronic pain, as time went on!  Here is what I’d like to say to them should I get the chance:

This letter is not only for CNN’s Anderson Cooper, but for Dr. Sanjay Gupta, Dr. Leana Wen & Dr. Drew;

First of all, I’m writing not only for myself, but on behalf of all Chronic Pain patients. Number 1: The Disease of addiction is NOT equal to the Disease of Chronic Pain! They are not one in the same! That so-called “Town a meeting” on CNN this evening was not one at all! A true Town Meeting is an open forum that promotes Democracy! Tonight, Anderson Cooper & CNN’s “get together” with Dr.’s Drew, Gupta & Wen; was more like a one sided opinion/discussion meeting! Only one true chronic pain patient got to speak! Not only was she interrupted, but then Dr. Drew had to make sure to say that she “was not the ordinary”!

I’ve been a patient with chronic pain since 2002 s/p a MVA! Then after those multiple injuries, 8 surgeries and more pain than I want to remember, I got the worst form of Chronic Pain, called “Complex Regional Pain Syndrome”(it is #43 on the McGill Pain Scale. It’s right up there with cancer, childbirth & amputation of a finger). It was then, that I truly knew what chronic pain was all about. Or so I thought, until my CRPS went systemic/full body, s/p another surgery in 2013.

Mr. Cooper, at your meeting,it was mentioned that “2 million Americans misuse Opioids”. But do you know how many Chronic pain patients take their medications just as prescribed? The majority of Chronic Pain patients are conscientious in taking their prescribed Opioid pain medications. We do not CRAVE or get a “high” from our prescribed pain meds. Nor do we allow our pain meds to control us or our every thought. On the other hand, an addict is controlled by his drugs! That’s one main difference between pain patients and addicts. I control my medications, they don’t control me! Dependence and addiction are completely different. Many meds can cause withdrawals when cessation begins, for example: blood pressure medications, anti-depressants, Beta Blockers and so on! Do you know that “WE” (Pain patients) get lumped together with Heroin addicts? What if your mother or sister suffered 365/24/7 with horrible fire-like burning pain, like that of CRPS? Would you be so quick to push them into a category with “drug addicts”? What if they were under a reputable Dr’s care and taking pain medications in order to function and be able to get out of bed in the mornings?

Untreated Chronic Pain kills too! Opioids have been prescribed for pain for many years! Why punish everyone for the actions of a some?  When we are taking our pain medications responsibly and as prescribed. While we are under the care of a Medical Doctor who went to school for many years to learn his job; (whether he /she be a GP or Pain Management specialist).  This Physician took the oath to “Do No Harm” and as long as they’ve been prescribing responsibly; then there’s no reason for any of this! It’s just the latest hype by those who are “on a mission”! The people who are up in arms about this subject, are those who stand to lose the most money if we are allowed to just continue taking the medications that work for some of us! I’m talking about The Private clinics that are getting $2,000 cash, per Ketamine infusion because insurance doesn’t pay for that. Desperate people in horrible pain are willing to pay cash to have some sort of hope or even short time relief!! (**Ketamine is a much more dangerous drug! It’s used in Veterinary medicine , to tranquilize a horse)! Others that stand to lose money are the manufacturers of the spinal cord Stimulators and pain pumps, along with Massage & Acupuncture centers. Why let us take an inexpensive pill that has worked for several years? If something is and has been working, please don’t take it away?

The Disease of Chronic Pain does not Equal the Disease of addiction! Lastly, people suffer because Chronic Pain is not only stigmatized but it’s under treated. Suicide rates rise & will continue to do so, due to this lack of treatment & lack of availability of the medications required for the relief of chronic pain. Also because physicians are “running away” and closing their doors on chronic pain patients because of the fear that they now have of being taken away to jail just for doing the job for which they went through many years of schooling and took an oath to “Do No Harm”!

img_1415-1