Fight For Our Lives


img_1748-1

Hello Luvs,

Here is a video that has taken me awhile to get out. I asked for submissions from every chronic pain patient on LinkedIn, 3 Instagram accounts, 3 Twitter aaccounts, 5 Facebook pages and 5 or 6 Facebook groups. I requested video submissions many times during November 0f 2018. I received a total of 8 videos. I waited to produce and edit this video until this week.  It is the First week of February 2019 and the video was posted today 2-7-19. I added the closed captions for other Deaf/Hard of Hearing persons like myself.

Please watch this  video on YOUTube and make comments. Share this video on Twitter to our POTUS and to the FLOTUS. Please share it to Fox News, Greg Guttfield and any other news, media or government agencies where you think someone may be able to help us. Please share, share and share. We need someone to see us, hear our stories and believe in helping 100 million chronic pain patients.  There are about 26 million who depended on Opioid prescription pain medications and now they are mostly unable to obtain any relief whatsoever. Thank you for watching and for sharing this video far and wide.

This video is not affiliated with any group or organization. This was totally my idea and I requested, received, produced and edited this video on my own. These ladies are brave and I’m so thankful and grateful for their pleas and their stories. Thank you again! Have a wonderful day!  If you just click on the link below (it is a safe link, I promise), it will take you directlly to the YOUTube video that I uploaded. If you prefer to visit it yourself without clicking on the link, here is the URL:

or click the link below

(**IF YOU NEED CC FOR DEAF/HOH, PLEASE USE THE BLUE LINK AND GO TO THE YOUTUBE VIDEO WHERE I’VE PUT THE CC JUST FOR THOSE OF US WITH HEARING LOSS):

Fight for our LIves -Full Video Here

Don’t be afraid of opioids


There is a gene called “addiction” that some people are born with and others are not. This gene can cause a human being to become an opioid addict. It is not the medication that causes addiction. The medication is just a tool, that if used improperly can become deadly. But again, the medication is an inanimate object or a tool! Similarly a gun is an inaminate object; but when people use it in the wrong way, it can kill!!  Therefore, people should not be afraid of Opioids any more than they should fear Insulin if they are Diabetic. When used responsibly and properly, as the high majority of chronic pain patients do; opioids can give back lives and save families. Just the same way as a gun can save lives and families, when used properly and for specific reasons. The idea that those opposed to opioids for chronic pain need to understand is that

  1. No one will force them to take opioids, so they should stop trying to force a ban on opioids for chronic pain patients.
  2. Opioids don’t “kill people”. They are only a cause of death if they are taken incorrectly (as with most medications) or if they are used inappropriately.
  3. Chronic pain patients are not addicted to their opioid pain medications. They may be dependent or tolerant but again, there is no “high” involved. There is no scrambling for a “fix”

I found more interesting information about the confusion surrounding opioids and addiction. If you try to GOOGLE “how many people have died from PRESCRIPTION drug overdose in 2018 or 2017?”, it doesn’t give you a straight answer! But if you go to this article written by Josh Bloom Who Is Telling The Truth About Prescription Opioid Deaths? DEA? CDC? Neither?  It becomes much more clear what is happening, sort of?

Let me explain in a bit more detail. You see, Andrew Kolodny, the “king of detox houses”  has become very rich.  He appears to be greedy for more. This man just cannot tell you enough about how chronic pain patients and drug addics are in the same category. Yes, it’s true and he says those words directly on this video at time spot:  1:37 to 1:54 Washington Post Video: “Dr Andrew Kolodny; opioid crisis “not and abuse crisis, it’s an addiction epidemic” ….therefore, I have surmised (along with many other advocates, that this man is just trying to prey on those who are lost to addiction and those who have lost someone to addiction overdose. But do you realize (I’m guessing he does not or he’s covering it up?) that the opioid deaths are not from prescription opioids! They are from illicit Fentanyl/Carafentanyl from Mexico and China mostly. These are deaths that are from mixing illicit drugs possibly with some opioids and the PROP and CDC etc. are then calling them all “opioid deaths”.

In Josh Bloom’s article above he shows the lies, the outright blatent lies that people are being told by the DEA and others. Read this quote from his article above, dated 11-5-18, “Controlled Prescription Drugs (CPDs)…are still responsible for the most drug-involved overdose deaths and are the second most commonly abused substance in the United States.”  (from the  2018 National Drug Threat Assessment,Drug Enforcement Administration, October 2018) ….but it’s not true…it’s deceiving. Josh Bloom adds that “there was a newly released 164-page report by the DEA manintaing that controlled prescription drugs are killing more Americans than any other drug”.   He concludes that this is either deceiving or just confusing.

You see, other drugs are included in these “death tolls” from Opioids. It’s not just prescription opioids but there are depressants,  stimulants and other drugs responsible as well. They are all being “lumped together”. There is even a CDC chart in his article that shows how they seemingly intentionally misled all of the readers. The chart shows “drug poisoning deaths” and in very very small print it states “The CDC drug poisoning death category medications” was formerly “prescription drugs” but was changed for two reasons: 1) the category includes Over the Counter Drugs…..” So now OTC drugs are added too this mess as well. He also included that “annual deaths from NSAIDS vary widely they are significant:  3,000-16,000 deaths per year.”

Medications for chronic pain illnesses are not “bad” and should not be causing so much turmoil in peoples lives. The PROP and people like Kolodny and his minions, have decided that they are “evil” and so now they are spreading it like wildfire. There are his drug treatment centers and the creators of Suboxone/(Buprenorphrine-Reckitt Benckiser and others who want to “get rich” by hurting the innocent people who are chronically ill. The RBI corp. even went to far as to pull off a shocking scheme to profit off of heroin addicts in 2016. You can read about that in my other article called “About Suboxone, Buprenorphrine and Naloxone” . Andrew Kolodny even made a statement to the effect of how this generation of chronically ill/disabled persons living with chronic pain need to die off, so that the next generation won’t be addicted to opioids for chronic pain. Can you even believe that train of thought? The next generation won’t even have the option to have opioids for chronic pain (*or experience pain relief). This in an attempt to stop addiction and overdoses from occurring. In other words,  let’s just knock off  the elderly, the disabled and the chronically ill; so they won’t be a burden to anyone, is that it? Get rid of all of us so that we won’t suck the system? So our kids won’t know anything about pain control? They will be brainwashed into thinking that mindfulness, acupuncture and grounding can “cure” chronic pain illnesses? Do people really believe that? I do believe that some of the complimentary therapies may alleviate a minimal amount of pain for the short term. But they’re not a long term answer for chronic pain.  I know of one U.S.A. Pain organization that really “pushes” the complimentary therapies. Consequently they have actually abandoned a large number of the pain community who rely (*or did rely) on opioid medication therapy for pain control. Where are the human rights groups and other organizations who have the power to affect a positive change for the pain community? Why hasn’t anyone physically helped to change the misdirected concocted fear of opioids?  I’d truly like to have an answer for these questions? It’s hard to believe that those who blindly play “Follow the Leader” to the likes of Andrew Kolodny, just want chronic pain patients to “go away”? But as I write this article, there are more states petitioning to become “right to die” or assisted suicide states.  It is already legal in:  Washington DC, California, Oregon, Colorado, Vermont, Hawaii & Washington (still being disputed in Montana). Are we really 100% useless and disposable, like garbage to be thrown away?

Thats a scary thought to ponder! There are people such as Andrew Kolodny and Organizations such as the CDC, DEA and PROP, who would rather that I die than stay here with my husband, children and grandchildren for as long as humanly possible? All I need to be able to do is to take a pill a few times a day or wear a patch and I can live some semblance of a life outside of my bed or the recliner that I now live in for the best part of most days now. The Opioids do not make us “high”. I’ve never been “high” and all they did was take the edge off of a whole lot of pain; due to a long list of high pain chronic illnesses. Most of us, who are living with chronic pain, just want to live some kind of life. Don’t we have that right, just as others without pain do? Many of us were victims of accidents or crimes or just plain unlucky. Why do they want to make our life unbearable? Or even worse yet, why do they want us dead? Is this Eugenics coming back from the early 1900’s?

 

Draft Report on Pain Management Best Practices | HHS.gov


Hello Luvs,

What do you think of this?Request for Comment on the Draft Report, proposes updates to best practices and recommendations for pain management, including chronic and acute pain.
— Read on www.hhs.gov/ash/advisory-committees/pain/reports/2018-12-draft-report-on-updates-gaps-inconsistencies-recommendations/index.html

So, after you read about what the HHS task force has decided is best practices for people living with chronic pain. If you read the list of meds; it starts out with Acetaminophen, NSAID’s, Anti-convulsants & Anti-depressants. Then they discuss aqua therapy, PT, massage, Tai-chi, etc!!

What the heck don’t they understand about real pain, nerve pain, chronic pain? We don’t want to be touched because it hurts! I don’t know about you, but aqua therapy isn’t good for someone like me who has open sores from years of CRPS and Eczema secondary to that! How about NSAID’s that I cannot taste because of chronic kidney disease? Acetaminophen taken too much, too often causes liver failure and even death! Sooooo my opioids do not/did not cause any issues to my body except for occasional constipation! Big deal! Get Miralax or some “Smooth move tea”!

This once again, is upsetting to me and to many others! On one hand they advise to treat people as individuals case by case. On the other hand, they’re advising people with large amounts of ongoing chronic pain, most probably for a lifetime, to take Acetaminophen. How is that right or even thinkable for someone like me, for example? I was quickly tapered from Fentanyl patch after doing well on it for 14 years!! Now I sit in my recliner 16+ hours a day due to pain and fatigue. I honestly cannot take NSAID’s and “Tylenol just won’t cut it, Mr. Sessions!!”

Let me know what you think about the HHS task force recommendations?

International Stakeholder Community of Pain Experts and Leaders Call for an Urgent Action on Forced Opioid Tapering | Pain Medicine |Oxford Academic


The aforementioned article proves that hopefully, there of the chronic pain community.

In 2016, Andrew Kolodny, (who is co-Director of Opioids policy Research at Brandeis University), along with a group of Addiction specialists & others, went behind closed doors to “invent” & then Implement the 2016 CDC Guidelines regarding the use of Opioids. These were Supposed to be just guidelines for primary care doctors. But they rapidly became “the law” in the eyes of the CDC, DEA, National News Media outlets, Pharmacies & our government officials. Today we even have legitimate, licensed pain management Physicians, heading for the hills! They’re Not following the Hippocratic oath. These physicians are abandoning patients & putting many at high risk, myself included. The way that the chronic pain community has been treated, has been outrageous.

Please feel free to share this article on social media. Print it out and take it with you to your Dr. appointments. Let’s also share it far & wide through the news media channels as well. They’ve been getting it wrong & now need to help change the hysteria & damage that’s been created.

“We, the under signed, stand as a unified community of stakeholders and key opinion leaders deeply concerned about forced opioid tapering in patients receiving lolong-term prescription opioid therapy for chronic pain. This is a large-scale humanitarian issue. Our specific concerns involve:
— Read on academic.oup.com/painmedicine/advance-article/doi/10.1093/pm/pny228/5218985

Pain Warriors- The Movie


Hello Luvs,

I want you to really take a look at this post, please? I want you to “meet”, Tina Petrova. She is a fellow pain Warrior and a colleague of mine. She is not only a friend; but a friend/colleague in advocacy and awareness of chronic pain and people who live with chronic pain illnesses.

Honestly, Tina Petrova is an award winning film maker, a motivational speaker & chronic pain activist. This movie is about the real deal, chronic pain and everything that goes along with it! This movie has got to catch the attention of legislators and others who do not yet understand what it’s like to live with daily, unrelenting chronic pain.

“Pain Warriors- The Movie”, WILL catch the attention of anyone watching. But especially those who need to change the way they think regarding intractable pain and invisible disabilities. We need your help to donate and /or spread this crowd funding campaign. Please help to get more people involved in supporting this awesome film. The crowdfunding campaign will go through mid-September 2018.

Here’s the link to the Seed & spark crowdfunding campaign for “Pain Warriors- The Movie”!

img_6189

Link to the Trailer: Pain Warriors- The Movie

*Pain Warriors – The Movie

Needs Your Help! Please Help Support This Beautiful Project!

Inclusion Statement

Our story brings to light a deadly suppression of facts & figures. Chronic Pain does not discriminate against age, sex, or race; suicides in all groups due to under managed pain are on the rise. We are, all of us, only one car accident or one surgery away – from a life of chronic pain.

About The Project

PAIN WARRIORS ~ sets out to examine the invisible crisis of Chronic Pain in North America, and its devastating toll on society. Without proper and timely education of the masses this growing concern can and will reach a tipping point, beyond which there is no return.

Society’s lack of public information regarding Chronic Pain, has sadly forced this disease and its sufferers underground.

Not only are many denied adequate treatment , they are often looked upon by society as a whole as outcasts. We are , all of us, only one cancer or one car accident away from a life of chronic pain. As we age the numbers of chronic pain patients will only grow exponentially.

We intend to bring to light a deadly suppression of facts and figures. Without education and awareness, there can be no reform.

Compelling interviews showcase a broad cross section of pain patients, their loved ones and the doctors that treat them across North America. We share intimate, courageous and heart breaking 1st hand stories from pain patients in the trenches- the ongoing political and social issues they face and how they struggle to cope , just to get through another day.

Pain Warriors- The Movie

In recent months, several American pain specialists have been targeted by the DEA and currently face loss of license and potential incarceration, for attempting to uphold their Hipprocratic Oath and serve the U.S. pain population. The lines between “pill mills” and  legitimate doctors have become blurred and in many cases, unrecognizable to the general public and society at large.

In recent decades groups including breast cancer and aids patients have banded together formally with runs marches, rallies –  telling their stories in the press.

Doing so has garnered more ambitious and imaginative solutions to treatment and health care reform. The best hope for pain patients,  is to become more vocal and active in their own pain management.

The needed response to pain, it would appear, is to encourage patients to stand up and speak up.

PAIN WARRIORS  plans to do just that – give voice to the voiceless.  #givepainavoice  #painwarriors

Pain Warriors ~ the Movie has posted an update!

Pain Warriors shines a spotlight on Pediatric Pain ~

11 Yr. old Hunter,  battles courageously with a Chronic Pain condition, using Superheroe comic book characters – to inspire him to get up and fight yet another day. Pediatric pain is one of those growing pain conditions that is under- discussed and under- represented in the media.

Our new film Pain Warriors – seeks to identify and shine a spotlight on marginalized peoples and groups that have fallen through the cracks of both appropriate and timely healthcare and , societal compassion as a whole. In the pain community, we use the term” a slow death of compassion…” to denote societies overall shunning of chronic pain as a legitimate disease that steals lives, breaks hearts and destroys the very fabric of family life. There has been a deadly suppression of facts and figures for far too long. Pain Warriors  the movie ~ dives fearlessly into the muddy trenches,  where chronic pain patients & pain doctors who face a hostile regulatory environment live in apprehension, fear and suffering-  of what is to come next… live in fear and suffering.

Visit Pain Warriors ~ the Movie

More About Bupenorphrine – Suboxone


This information is “straight from the horses mouth”…please read this chronic pain patients horrific experience (he wrote this after reading my last blog post in one of my support groups):

Absolutely, I mean absolutely do not ever let anyone put you on Suboxone or buprenorphine – the primary component of Suboxone – when they try and shove you off of opiates because the stuff is absolute poison.

When my pain pump ran out of morphine sulfate after I lost my pain management doctor, thanks to the new CDC guidelines, I went into acute opiate withdrawal and ended up in the hospital. In the hospital they were supposed to detox me from opiates, they did not. Instead they pulled a really shitty bait and switch, and put me on Suboxone. Suboxone is extremely addictive and 10 times harder to get off of than conventional opiates, and much, much uglier.

I know this from personal experience. Getting off of Suboxone or buprenorphine – its active component – is an absolute nightmare.

For example: I can take 15 mg of hydrocodone – hydrocodone is the opiate in medications like Vicodin and Norco – per day for six months solid and I can just stop taking it, cold turkey, and I’ll feel kinda crappy for three or four days, I’m off of it, end of story.

After a single month of taking 16 mg of Suboxone per day, I have now been trying to wean myself off of it for nine weeks, every step of the way has been absolute hell, and it will take me at least another 2 to 3, possibly even four months to wean myself off of it. And then, I understand, I can expect to spend another couple of months feeling significant withdrawal symptoms even after I have stopped taking Suboxone/buprenorphine.

This has got to be one of the worst medical scams ever. I would compare using Suboxone to get people off of opiates to using whiskey to get people to stop drinking beer.

Suboxone is also hideously expensive $370, for a 30 day supply.

A 30 day supply of four Norco 10/325 per day is only $33.

If you get just straight buprenorphine – the active component of Suboxone – you can get it for about $90 for a 30 day supply.

The cost is actually the least of the worries where Suboxone/buprenorphine is concerned. If you are a longtime junkie who was been sticking a needle in your arm for years Suboxone may make it easier for you to get off the needle.

If you are a chronic pain patient who has been taking opiates for your chronic pain and they are going to cut you off of your opiates, you are far better off going cold turkey – hopefully your doctors will allow you to wean off of the opiates – and skipping the Suboxone/buprenorphine hoax because getting off of it is 10 times harder than getting off of conventional opiates, and the nightmare from hell every step of the way. It is hideously ugly.

I don’t know how to say it any plainer than this: Suboxone/buprenorphine is, in my estimation, absolute poison, and one of the worst travesties of medical mispractice ever perpetrated on the American public. it is a scam to make a pharmaceutical companies rich.

When it comes to Suboxone/buprenorphine: just say no.”

***Today I opened up Facebook to find this response regarding my article from July 31, 2018. That’s is where I discussed Suboxone, Bupenorphrine & Naloxone. Please refer to that article (July 31,2018) if you need to “fill in the blanks”, so to speak.

I thought I would add his comments here. To be fair to all of my readers, I will also post my responses. I want you to know my reactions and the words that I used to make sure that my original post is not “confusing” to anyone else.

Here are the words that he wrote underneath my article that was posted in my CRPS support group on Facebook; called “RASEforCRPS” (the letters represent the words: Reserach, Awareness, Support & Educate) (*it was also posted in other Various groups & pages) :

I’ve been safely and effectively using plain Bupenorphrine, an opioid, in the form of Butrans patch for several years! I have also used the antidepressants and have been fine with both.

Each of my docs can order it without certification or special classes. It HAS been approved by the FDA for severe pain that needs round-the-clock management.

There is a lot of different info out there and there are other medications with Bupenorphrine in them. Here is some info! Here is a pharmacy times article about this:

“Belbuca Is the newest formulation of you been or for an available as a buckle films and indicated for the management of pain requiring around -the -clock, long-term opioid treatment not adequately controlled with alternatives. This reflects the new standard labeling required of all extended-release of yours indicated for Chronic Pain.”

“Buprenex IV or IM is approved for the relief of moderate to severe pain. This formulation is also used off-label for the treatment of opioid withdrawal in heroin-dependent hospitalized patients.”……..(you can read this article in its entirety here: Pharmacy Times article * that patient also gave this article for reference: Second article given to me by that patient

*******Here was my response to her post underneath my article:

The writers of your one article make the medications you are being prescribed. The information I have is from several trusted news organizations, and our government has been saying for years how big Pharma has downplayed the negative affects of their products. Lastly, I’ve known people who say that it’s much worse to stop taking (Bupenorphrine/Suboxone) than others that are not agonist-antagonist opioids. All I’m saying is that if you want to take that medication, even though it’s not approved by the FDA; you should have the choice to do so! But if the other kind of long extended release Patch has worked for other people, including myself for over a decade, then I/they should be able to keep the medication that has worked and hasn’t caused any problems for me whatsoever! I also have at least six or seven different articles where I found my information on the Internet.

There’s also this information below, which says the medication can be used for pain/refractory depression for “off label use” (then why can we not use the fentanyl patch for off-label use?)… there’s also contradictory information and most state that it’s ” only a low analgesic at best”!

In this article here Bupenorphrine- Naloxone Therapy in Pain Management , it states that these medications In the past few years, they have been increasingly prescribed off-label for chronic pain management. The current data suggest that Bupenorphrine /Naloxone may provide pain relief in patients with chronic pain who also have opiate dependence or addiction. However, the pharmacological profile of this medication states that it is a weak analgesic that is unlikely to provide adequate pain relief for patients without opioid dependence or addiction.

Therefore, just as I stated in my original article, these medications are probably OK for people who are struggling with addiction to opioids. But if you do not have an Opioid addiction or an opioid use disorder and you’ve been using the same opioids for Chronic Pain for many years, and they still help to give you a semblance of life & relieve your pain, then you are not an addict. So the Bupenorphrine /Naloxone may work for low analgesic pain relief in addicted person but not in chronic pain patients. That’s what I tried to state in my original article as well. I also said that the company (*Reckitt Benckiser) that is responsible for making the medication Suboxone/Bupenorphrine started this whole fake opioid crisis so that they could have a monopoly on this medication and get rid of all opioids. Therefore it was a “get rich scheme” for them.

Lastly, I’ve copied and pasted for you, only one of the warnings for the buccal Butrans patch:

The risk for serious, life-threatening or fatal respiratory depression. Physicians should monitor for respiratory depression, especially during initiation of the treatment or after a dose increase, the company said. “Misuse or abuse of Belbuca by chewing, swallowing, snorting, or injecting buprenorphine extracted from the buccal film will result in uncontrolled delivery of buprenorphine and pose a significant risk of overdose or death,” the statement adds.

• The risk for accidental exposure. “Accidental exposure to even one dose of Belbuca, especially by children, can result in a fatal overdose of buprenorphine.”

• The risk for neonatal opioid withdrawal. “Prolonged use of Belbuca during pregnancy can result in neonatal opioid withdrawal syndrome, which may be life-threatening if not recognized and treated, and requires management according to protocols developed by neonatology experts,” the statement said. If prolonged treatment is required in a pregnant woman, “advise the patient of the risk of neonatal opioid withdrawal syndrome and ensure that appropriate treatment will be available.”

After reading the warnings on these medications I don’t see why they are any better than regular opioids or the fentanyl patch? All medications, including heart medications, Coumadin & chemotherapy, come with warnings! But sometimes the benefits outweigh the risks.

Articles:

1:Bupenorphrine has not been approved for pain- but possibly off label can be a weak anelgesic

2: Are there other uses for Bupenorphrine

Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them: