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 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!

Too Little Too Late


So now we know that we’ve been human test subjects for a study performed by our US government (thanks to CIAAG, Lauren DeLuca & the administration of that Non-profit org.CIAAG website).

All along we’ve been discussing, writing and protesting with non violent rallies etc., to have our voices heard. The voices of the most chronically ill persons who have been living in an environment of fear, torture & Hell for the past 3 years, due to the CDC Guidelines. We know they were written in secret by a few addiction experts and others who had no knowledge of what chronic pain/disabling high impact chronic pain is all about. They don’t understand or know what it’s like to live with high amounts of ongoing, never ending pain 365/24/7.

Our government leaders allowed these people without any knowledge of chronic pain/painful disabling/lifelong illnesses, make medical decisions that changed and lost lives by the thousands and even hundreds of thousands. Here is a recent article by Dr Jeffrey Fudin, MD, in his blog “Practical Pain Management”. It is a great article and speaks to our government and it’s meddling in the lives of our own chronic pain patient community:

https://www.practicalpainmanagement.com/resources/news-and-research/too-little-too-late-us-government-backtracks-opioid-discontinuation

A Letter To RFK (Human Rights) Foundation


RFK Human Rights Group: Watch Video

Hello Luvs,

I was sent a video about the RFK, Human Rights Group. It’s led by Kerry Kennedy, daughter of the late Robert Kennedy. She is an attorney and she now leads this human rights group: RFK Human Rights group website

Immediately, I drafted a letter to her and sent it. Below, I have copied/pasted the exact letter that I sent to Ms. Kennedy. Something must change! The “Opioid Hysteria Crisis” is one of the worst nightmares I’ve witnessed &/or experienced. Watching a large group of approximately 26 million (out of the 100 million people living with chronic pain) human beings, systematically tortured to death has been horrendous. To be a witness to this despicable, willful & planned money making scheme, is nauseating to say the least! I’ve watched as the innocent chronically ill people in our pain community die and continue to die on a weekly basis. Maybe I will be next? So I pray that doesn’t happen and that I keep fighting.

I have been a very active advocate/activist in fighting for the rights of people in the chronic pain community. I have led the fight as far back as 2007, in spreading awareness, doing fundraisers, leading several online support groups & then being certified & leading “in-person” chronic pain support groups as well. I’m certified in pediatric RSD/CRPS, as well as being the Social media assistant for RSDSA. I’m a freelance writer with a blog (this one, @tearsoftruth.com) that has been nominated twice for “Best In show- blog by WEGO Health Awards. I was invited by IDA ( Invisible disabilities Association) to do & ultimately did a featured video on their “Invisible No More” YouTube channel. In 2016,’17 & ’18, I had 42 articles published. I was one of the many advocates/Drs/nurses etc., who helped edit & sign the letter to Brandeis University, demanding that Andrew Kolodny be fired for his leading role in the torture & deaths of multiple chronic pain patients (due to forced tapering & the 2016 CDC Guidelines).

Lastly, I was awarded the “US Pain Ambassador of the Year Award” in 2016. Afterwards, I was asked to be on the USPF Board of Directors (*a volunteer position which I accepted & later resigned after only 8 months. If you want to read more about that, visit: Why I resigned from the US Pain Foundation).

There’s more, but you get the idea. Sadly, since last Summer, 2018, I had my LA/ER pain medication forcibly & quickly tapered between July 22 –September 1st, 2018. I’d been doing reasonably well on a stable dose for 14 years. Since then I can often be found in my “Lazy boy” type of recliner, approximately 16 hours per day. I continue to do my best with my online support groups and I continue to fight for us via my blog/writing, support groups, mentoring for RSDSA, Social media Support for RSDSA & Deaf/HoH communications Director for CIAAG. I try to support everyone and stay out of any drama. I’m doing all that I can do at this point in time.

This is inhumane and torturous for the USA to be treating their citizens this way! Someone please help us!

Here’s the letter that I wrote to the Human Rights Watch group, run by Kerry Kennedy:

Dear Ms. Kennedy 

I’m writing to you today because I know that you help people who’ve had their human rights violated. I represent only one out of 100 million people in the chronic pain community. Out of that number, there are an estimated 26 million of us who urgently need your help.  Many people in the United States of America are  dealing with horrific pain on a daily basis.  I stand along with them  & implore you to help put an end to the violation of human rights that is taking place. 

The CDC, DEA and “Big Brother” Pharma companies are “hurting” the American chronic pain Community. We are losing access to medically necessary medications that enable us to live some semblance of a life. 

We are and have been losing access to our pain relieving medications since the implementation of 2016 CDC Guidelines.  We are  being “lumped together” with illicit drug users and addicts. Every time a celebrity dies of an overdose, they blame the pain meds as the cause of death. But really it’s the misuse and abuse of pain medications along with the use of recreational street drugs. 

A Dr. should not be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our pain Physicians are leaving in droves because of them & the 2016 CDC Guidelines. 

The  “Opioid epidemic” is about illegal/illicit fentanyl brought here from Mexico & China. It’s not about us, the 100 million chronic pain patients in the USA. Only 1% of legitimate chronic pain patients who are legitimately prescribed opioids, for high amounts of pain, ever become addicted. It’s as though our country is now torturing and punishing people for being ill.

Ms. Kennedy, we are not addicts and we are not “addicted”.  A person can be “dependent” on a medication and not be addicted! They are two very different situations. 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 “drug of choice” at any cost.  They look forward to taking them because of the “high” they get. A legitimate chronic pain patient who’s done well for years on a stable dose of opioid pain medication, doesn’t get any sort of “high”.  We also take our medications responsibly.  We get some relief and reprieve from the daily chronic pain that we live with. 

Please help us get back the physician / patient relationship, without interference from Pharmacy’s, insurers, the government and politics.  Please help us to keep our Drs in charge. It should be the decision between patient/physician to choose what is necessary and best for our pain control. They went to medical school and the government did not.

Many pain management Dr’s are leaving the practices they’ve built and the profession they’ve worked hard at, to achieve. They’re  afraid because they are being wrongly targeted by the DEA . They aren’t free to prescribe medications that help to relieve pain anymore. 

People in the USA in 2019 are being tortured and hurt by this on a daily basis. Just yesterday, I read the story of a 94-year-old woman who shattered her kneecap and was taken to the hospital emergency room. They immobilized her knee and sent her home without any pain control at all. Can you even imagine shattering your kneecap and not getting any thing to help with a torturous pain like that?
Ms. Kennedy, please help us? I understand there are people who die from overdoses. But they are a totally separate group of people who need a different kind of help. It shouldn’t be at the expense of an entire separate community of citizens. People In pain 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 they’d been living some semblance of a life while on a regimen of medication for pain control. But because of “fear”, Dr’s are taking away the little bit of life that some of us have left. 

I also don’t believe that anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when an inexpensive & safe pill, with little side effects can help so much. 

I implore you to help the estimated 26 million chronic pain patients in the USA, who are “dependent” on opioids for pain control & who are diligent and take these medications responsibly. Help us to get back the freedom of choice. Get us back to the pain management medication regimens that are life sustaining for us with more tolerable pain levels.

Please read my letter and talk to me if you’d like. We need you to understand that we are “chronic pain patients” and not “addicts”! We are just real people living with unfortunate circumstances & high pain illnesses. Please help us to receive the medications that give us some semblance of a life for ourselves & our families.

Sincerely,

Suzanne B. Stewart
Recipient of U.S. Pain Ambassador of the Year Award‘16, Mentor & Social Media Coordinator @RSDSA, freelance writer, Blogger/Blog “Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, Director of communications for Deaf/HoH for CIAAG, patient advocate for Deaf/HoH
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars” ~Khalil Gibran~
DISCLAIMER: The contentI is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We can not and do not give you medical advice. The information in this e mail should not be considered complete. Information obtained in this e mail is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this e mail. If you think you may have a medical emergency, call your doctor or 911 immediately. I do not represent to be an authority but I’m just helping pass information from other organizations, advocates and or websites.

America’s Chronic Pain Community Being “Used as Study Subjects”?


What you are about to read will truly surprise you; or maybe not? As you may know, Lauren DeLuca, President and Founder of CIAAG (Chronic Illness Advocacy and Awareness Group)  & Shasta Harner, Director of CIAAG; have been In Washington DC this week.  They are in our nations capital working tirelessly for the chronic pain community. While others including Jayne Flanders, C0-founder & Vice President, Andrew Auell, Director of Research, Peggy O’Connor, Legal analyst have been working “behind the scenes” on social network, writing, making phone calls to legislators etc.  The information that Lauren and Shasta have unraveled is very interesting and may or may not surprise you.  Read on…..

As  you know, we are in the middle of an Under-treated and Untreated Pain crisis and that is what the “Opioid crisis” truly is all about.  The efforts of the CDC, FDA and addiction specialists etc., to reduce opioid prescribing in the USA, has resulted in only a rise in overdoses and suicides. Prescribing of these medications for the treatment of chronic pain and high pain chronic illnesses is at the lowest point it has been in 25 years. Yet the overdose rate has increased because the addicts will find a way to get what they want and need even through illegal and drastic measures. They are getting illicit/illegal fentanyl and carafentanyl from China and Mexico and they are overdosing.  The suicide rate has gone up because the pain community is being tortured and persons with one or multiple High pain illnesses, are being left to suffer endless pain and ultimately torture.

How did this happen?  Lauren and Shasta have come to a conclusion about this while they’ve been doing lots of research and attending meetings in D.C. Their findings indicate this:  “that the CDC guidlines are actually part of a massive population-based study- a clinical trial if you will- that has been implemented into the national healthcare delivery system without the consent or knowledge of the American citizens impacted.  In review of the CDC guidelines’ execution, our organization has discovered what appear to be serious conflicrs of interest, potential financial incentives between parties intimately involved in the study, privacy, as well as of the constitutional, legal, ethical and moral rights of the citizenry.  Please send inquiries to lldeluca@ciaag.net or by phone at (774) 262–6671.”

Lastly, I have a CALL TO ACTION for the Pain Community: “Please Register (it is free to become a member) to beome a member of CIAAG. Next, if you would please show your support by mentioning CIAAG on your Twitter profile to show that you are a member. Please take this proposal and the info that CIAAG has found and disseminate it out into the community to your physicians, politicians, pharmacists, insurers, caretakers, family and friends; along with your state Dept.’s of Health.

****Just a reminder there are many flyers that are free to download from the CIAAG website (www.CIAAG.net) .  You are welcomed to please download this information and also disseminate all of that information into the community as well.  Thank you so much to everyone who has done so much to fight for the rights of the chronically ill, disabled and those who live with high impact chronic pain on a daily basis. If you would like to help a bit more, please remember to use the #CIAAGstrong

 

 

 

 

Frontal lobotomy for the relief of intractable pain • CERGM


Hello Luvs,

Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same

Who are the bad actors? Government, Healthcare or Patients? • CERGM
— Read on cergm.carter-brothers.com/2019/03/28/frontal-lobotomy-for-the-relief-of-intractable-pain/

The Nightmares of Pain Refugees


Hello Luvs,

I was deeply touched by 2 stories that I’m about to share with you! I’d like to personally say “thank you” to Sheri Owen & Maria Higgenbothem. They are the 1st and then the 2nd chronic pain patients in the video below. I want to thank them for their bravery and their candidness.

Sheri had a level-7, spinal fusion and did not receive any pain care in the hospital after her surgery; outside of the normal regimen that she’s been on for years at home.

Secondly, we have Maria Higinbotham, who went on “Nightly news with Lester Holt and Kate Snow. What’s happening to the Chronic Pain community is torturous and wrong! It’s inhumane and I would’ve never thought this would be happening in the United States of America in 2019. It’s almost like the old practice of eugenics. As if they want us to be gone? So that we’re not a burden on society anymore? This is so morally wrong! Please go to http://www.Videoyourpain.com.

Share your pain story with our legislators, politicians, government, doctors, and pharmacists. Let’s share these painful stories with the world and command that this torture be stopped!

I’ve put the two videos together for your convenience and to CC for the Deaf and Hard of Hearing communities/audiences.

Also, I’d like to add that there are several advocates & groups who trying so hard to do all that they can to help the pain community! I thank you all from the bottom of my heart.

Here’s the link to the original “Nightly News” piece on NBC. (Lastly, there are two news media outlets that are listening to us. Fox News and NBC now have their ears and attention turned to the pain community. Let’s tell them everything that’s happening. Talk to Lester Holt, Kate Snow at NBC & Greg Gutfeld at Fox News. Go to Twitter and find them by putting their name in the search bar. Talk to them! Tell everyone you’re story of under treated and/or untreated pain. They are now listening and we need their help and their voices!

I’d like to say a special “thank you” to David Weiland for posting the video in CIAAG Facebook group.

Here’s the Link to the Facebook Page for “Nightly News” with Lester- NBC Holt

This is the “Chronic Illness & Awareness Advocacy Group (CIAAG) and Non-Profit .org 501(c)(3), Founded & run by Lauren DeLuca & Jayne Flanders: Here’s the link to “CIAAG” Chronic illness awareness and advocacy group on Facebook

Here is the online link to the CIAAG website at www.ciaag.net

Here also are the links to listen to Dr Kline, MD, at Jonelle Elgaway’s Show on Conspiracies Against Wellness Network (CAW): You Tube page for CAW

Here are the links to the C-50 states group page run by Valorie Hawk: Link to Coalition of State Leaders Group C-50

Please everyone try your best to come together and let’s fix this problem! Because it’s a huge problem, a national emergency and a humanitarian crisis.

Here are two more links to a couple of great videos about #1: several pain patients stories of torture: The Link to “Fight for Our Lives”, a short Video that I made regarding this opioid hysteria & untreated pain crisis and #2 is a video about Suboxone. Link to my video, ”Pain, Politics & Suboxone” (It’s a good drug if you’re an addict but has a very low analgesic effect on chronic pain. Not a good choice for persons living with chronic pain illnesses)

Thank you for reading and please share!

9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/