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!

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.

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/

Are Imposters Preying On Unsuspecting Patients In Our Pain Community Again?


Hello Luvs

Once again I’m so sorry to be giving the news regarding the possibility of imposters (or at the very least, these are persons who don’t have the best interest of our pain community in their hearts) infiltrating our pain community. Last I wrote about this subject, was a month ago, inside of several groups, to warn them! It was regarding the notorious “Kate Ashworth” aka “fake RSD/CRPS guru”(see article link below). She was back again; hurting unknowing chronic pain patients! Those affected, just happened to be persons who also live with the unbearable pain of RSD/CRPS. (To find out more about RSD/CRPS, please visit: For Real Facts & Information About RSD/CRPS, follow this link to RSDSA Home Page (Reflex Sympathetic Dystrophy Syndrome Association)

*(To Read the article about the imposter,“Kate Ashworth”,who recently came back a second time & infiltrated the RSD/CRPS community; visit this link: This is the Link to the article about Kate Ashworth, an Imposter to the Chronic Pain Community) “Strangers Among Us”

On Tuesday night 3-6-29; I saw a message from a long time RSD/CRPS friend on Facebook. I saw the message very late in middle of the night and it was written by Mary Mattio, in a “closed & secret” Facebook support Group for RSD/CRPS. Posting with permission, this is what I read at approximately 11:30 pm:

I’ll show you everything that was written underneath. But first I want to say “thank you” to Mary Mattio for posting about this to the Facebook group, . When digging deeper, I’d like to say “thank you” also to Tracey Tipton-Morales & Marisa Gravett for their “detective work”, involvement and postings. But we need to all give a special thanks to Sarah Lesley, for being the first to figure out all of this mess which I’m going to try to explain. So thank you to everyone who’s been involved in getting the word out, sharing, reporting and blocking these alleged fakes.(I have to say “alleged” but I believe it is true, with my whole heart!)

This was the full post shared from Sarah Lesley & Marisa Gravett:

⚠️ ATTENTION CHRONIC PAIN COMMUNITY⚠️

* Shared from Sarah Lesley & Marisa Gravett *

Okay CRPS Community: If you are in the group “RSD/CRPS and Neuropathic Pain Syndrome” beware… This was brought to my attention this morning. One of the admins actually works for a treatment center that focuses on getting pain patients to stop talking about their pain, basically making it seem like it’s all in our heads. I just saw a YouTube video shared in a post on that page this morning of him doing a presentation about his research and recovery centers and how it focuses on getting pain patients to stop focusing on their pain and to be able to return to be active members of society again. Basically making it sound like we don’t really need medical care, treatment etc…

I am infuriated at some of the things that I have seen and found out. We believe that many of the admins are either fake or using fake names and or involved in depth with Dr. Rand and his treatment centers as one of his treatment centers is referred to as the Bay Area and the last name of many of the admins is Bay…

Think of this as a conspiracy theory if you wish but I have just seen with my own eyes a YouTube video by Dr. Rand speaking about these treatment centers and it is very clear that this group and possibly other groups that we may all be involved in with similar admins, maybe using the information that we give against us as research, or to turn it in to help with their research or so-called research.

It is clear that this group is not created to help others. Many of the members I am sure do their best to help many people in this group to share information to ask questions and I do not blame or think any of the members are involved except for the ones that are listed as admins.

If you are in this group you are advised to check it out for yourself and if you feel the same way to delete the posts that you have in that page as well as get out of it. Also I would advise all of us to take a better look at who the admins are in many of our groups if we do not know or have never checked it out. We need to do all we can to look out for ourselves and our fellow CRPS Warriors and if there is any chance that this group is not on the up-and-up or could be using our information for any purpose other than to help each other live a life with this horrendous evil monster of a disease, I want no part of it and I do not want any of you to as well.

I was originally going to tag everybody in the post within the group that I’m friends with but there are so many of you I ran out of room on a piece of paper writing your names. I’ll be tagging as many as it will allow. Please if you are a CRPS Warrior check out this group check out the information for yourself and be careful out there.

I urge you all to please report all the fake profiles & all the groups that the fake profiles created & are Admins of, it’s the only way we can get them shut down. This post is now public, please feel free to share. Marisa Gravett has additional information on this as well.

Look up Jerrod Rand on YouTube if you want to see for yourself. Be careful out their Warriors. We are finding way too many wolves in sheeps clothing within our community.

** BELOW ARE SCREENSHOTS OF THE ADMINS & A FEW OF THE GROUPS & PAGES THAT ARE LINKED TO THEM **

**BEFORE I REPORTED & BLOCKED THIS “JERROLD RAND” facebook account (whether someone is using his name, or it is truly this person; we don’t know yet?)- I FOUND THIS POST VERY INTERESTING & TELLING OF PROBLEMS ON/WITH THAT PAGE:

I wanted to add that we all need to be vigilant, but we cannot allow ourselves to overreact or get too upset over this. Though it is very upsetting, our main goal is to stay calm and get the “word out” to the RSD/CRPS & Pain Communities. If everyone who reads this can go and report each of these groups and the 5 accounts that appear to be for the sole purpose of “pushing” these 30 or so “support groups” on unknowing people in pain! If we all can do that, Facebook will be able to shut them down!

Please understand that I’m in no way condemning those who have joined these groups. It’s not their fault. It’s the admins (whoever they truly are??) of those groups who are to blame. They are violating our community and others. Once again, people had recently been asked to send in photos of their Rsd/CRPS affected limbs. People, please don’t send your photos to anyone who asks. If you’re friends with someone who you know & feel comfortable with; and you want to share a photo; go for it! But please, just a bit of advice from my heart: “please don’t send your personal medical photos to anyone who requests them from you”. Also, PLEASE don’t take any medical advice from anyone online. They could be impersonating anyone! Only take therapeutic, medical advice from your own personal medical professionals. The ones who know you and your personal mecical history.

Any questions, please don’t hesitate to ask: Sarah Lesley, Mary Mattio, Marisa Gravett, Tracey Tipton-Morales or you can ask me & I’ll do my best to get the right answers for you.

Please share this public blog post everywhere that you can. We need to look out form& take care of each other! Thank you for your time!

Lastly, here’s a link to a video by Jerrold Rand who seems to be the ringleader:

1: “Dr” J. Rand on Opiate use” at his Youtube channel called “Bay Recovery”

2: “Dr” J. Rand talks about Methadone on his Youtube channel

3: THIS ONE MAY UPSET YOU- if you’re fighting for your life-saving pain medication right now (just forewarning you): “Dr.” J. Rand’s patient talking about chronic pain etc. (On Youtube)

I hope that you will all just take this information and do what’s in your heart. I cannot honestly write here, that I know anything “for sure” about this quack! I’m writing an opinion piece (because we are all allowed to have our own personal feelings and opinions). But my opinion is that this guy and his 30+ Facebook groups, fake admins (possibly?) and several fake accounts, are frauds! I’m just sayin’—–check the one photo screenshot above especially!! The one that shows that his license was revoked in 2012!! Then look at the News story underneath that one! About him self-prescribing sleeping pills etc! Also, it appears from that News piece, that he somehow may have been responsible for a women’s death??

Sorry for the bad news! But I love you all with my whole heart & soul. I feel an inner tug at my heart to protect you in any way possible.

Anti-Opioid Zealots


I opened up facebook to see that a person who calls herself an “investigative reporter”; doesn’t actually have a clue about the subject for which she stands upon her soapbox and spews hate and prejudice! Her hate speeches, disdain, lack of knowledge & empathy for the chronic pain community are outrageous. She also states that she’s a pastors wife! Which in a stereotypical sense, should make her more kind, loving & empathetic (on the contrary). I’m definitely not a cold or callous person. I deeply care about others & especially my fellow chronic pain patients. But I pity her in her for the way she’s unable to get help for her grief. I’m terribly and deeply sorry for anyone who’s lost someone that they love to any kind of addiction. She lost an adult child to overdose of prescription opioids. She’s made it her fight in life now, to rid the world of the “evil narcotics”. Do you think she knows that the statistics prove that only 1-3% of prescription opioids ever result in overdose?Check out this new report from the Cato Institute

It’s the illicit fentanyl and Cara-fentanyl from Mexico & China that are the problem! It’s not legitimate chronic pain patients with legitimate prescriptions from licensed pain management physicians that are to blame for this manufactured “opioid crisis”. The opioids are only a tool. Just as guns, kitchen knives and cars are all tools. These tools don’t kill people any more than opioids “kill people”! There’s a genetic link to addiction. There’s also a distinct difference between addiction and being dependent physiologically to a medication that one has taken for several years to decades. With addiction, the addict must make a conscious decision to get the meds, tell lies, keeps secrets and physically take the increasing amounts of drugs to give them a “high” or a euphoric feeling! They ruminate look at the clock, just waiting for their next fix! Chronic pain patients, for the most part; were never given the “luxury” of a choice! Most are people living the rest of their lives with high amounts of ongoing daily chronic pain; with no end in sight! The average chronic Pain patient, is living a life sentence in agony through no fault of their own! Usually an unsuccessful surgery, freak accident or a motor vehicle accident. Today we have an “under & untreated pain crisis”, with suicides from pain mounting in numbers weekly. A very knowledgeable and vocal physician and chronic pain patient advocate, Dr Thomas Kline, MD, has kept a record of these rising number of suicides.

Chronic pain is in fact a disease; as explained in this article in Health Magazine (February 2016) and in many other news articles. It’s Origin is Neurological. Scientists now believe that one cause of chronic pain is a dysfunction of the nervous system & includes the misfiring of nerve signals long after an accident or injury. According to this article: http://amp.timeinc.net/health/health/condition-article/0,,20187942,00.html, Neurons (cells in the nervous system that communicate with each other) become overexcited and keep firing, even after the original cause (injury or illness, in some cases) has long since passed. The person receives persistent pain signals.

If I may be so bold as to speak for the majority of the chronic pain community, we are not insensitive or calloused persons. In fact, I’ve never met a more caring, empathetic group of citizens. We care very much that people have lost their family members to the disease of addiction. We grieve for their loss of lives and love.

But we are grieving too! We have had so many deaths due to either suicide, untreated or under treated chronic pain since the CDC Guidelines appeared in 2016. Read this: Article by Dr Jeffrey Singer MD, Cato Institute. Dr Singer states that, “patients have become the civilian casualties of the misguided policies addressing the opioid crisis.” These “guidelines”have somehow become “law” to the majority of anti-opioid zealots; along with many physicians and pharmacists!

I wrote to the CDC and if you look at their response to my letter here(*& in photo below) A Response letter sent to me, from Exec Secretary of CDC, they state that “the CDC Guidelines are not meant to be rule, regulation or law. It’s not intended to deny access to opioid pain medications as an option for pain management”. I also agree that nobody should be denied pain care. That these are just supposed to be nothing more than guidelines. They weren’t meant to become the Law!!

Now there are admissions of the over fabrication of statistics by the CDC. Also, the AMA has come out with their own resolutions to these Draconian CDC Guidelines. You can find what they’ve written in this article by The Pain News Network https://www.painnewsnetwork.org/stories/2018/11/14/ama-calls-for-misapplication-of-cdc-opioid-guideline-to-end

This person calls herself an investigative reporter. People like her feel that because they have an audience & a platform; that they can stand on their soapbox and spew misinformation and hatred due to unresolved feelings of loss and grief! But they are just plain wrong!

When I opened up Facebook to try and reason with her. To attempt to discuss and/or debate like adults; I found that her page was blocked from any comments or discussions. That’s when you know you’re on the side of light and good. When you’re willing to discuss hard subjects in a civilized manner. But when discussions are cut out and blocked; that’s when we know that a person just wants to pontificate and spew hate!

Lastly, I wanted to add that this person should be in violation of the ADA, for her written comments regarding Cindy Steinberg. She made derogatory remarks about Cindy, a very well known pain patient advocate and friend of mine! I don’t think she is allowed to say the things that she said about Cindy supposedly being “theatrical” because she used a cot in between her statements regarding the opioid hysteria. This reporter even went so far as to say that Cindy was “laying in her her cot while testifying to Congress.”! Gee, I saw the video and it sure appears that she’s sitting in a seat discussing the situation in an intelligent manner. Here is part of Cindy Steinberg’s message:

“In the near term, we can and must restore balance to opioid prescribing with depoliticized, rational and cleareyed recognition of the risks and benefits of these medications,” she said, according to her prepared remarks. “In the long term, we must invest in the discovery of new, effective, and safer options for people living with pain.”

What’s wrong with that message? How could any sane person find something incorrect or one-sided, with that direct quote”. On the contrary, Cindy spoke intelligently! She discussed ways to help end opioid hysteria and the under-treated/untreated pain crisis today!

Lastly, if this one-sided, so called “investigative reporter”, would share an ounce of the truth with her readers; she’d have not lied about Cindy “laying in a cot while testifying to Congress”. Cindy, as you can see from the video of her testimony, is sitting upright in a chair as she speaks to Congress. But would there have been a problem if she had been in a cot while testifying? NBC & this reporter could very well be violating the Americans with Disabilities Act? In what world is mocking a disabled person OK? Isn’t there an ADA law that calls for accommodating persons with a disability?

Below is a photo from a portion of the return response letter that I received from the Executive Secretary of the CDC:

Here are some great resources for those who are skeptical of my words here today:

  • ALSO: Here are a couple of articles written by the person being referred to in my article today:
  • Lastly, I just want to add (so that I an not accused of being a “mouthpiece” for the USPF) that I resigned from the US Pain Foundation in September 2018; after only 8 months as a Board Member & 3 1/2 years as a volunteer Ambassador. I was planning on staying to try and help them rebuild. But the moment that I felt my integrity was challenged, I resigned.
  • Part of Two Worlds


    Hello Luvs,

    Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally deaf. I can hear various pitches, frequencies and sounds. With my hearing aids in, I can hear a bit more of the letters and words in normal conversation. But add in background noise and people who mumble or talk very fast. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces then trying to “fill in the missing pieces”.

    In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 4 or 5. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, I did feel better, but each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 9 years old. They were surgically placed multiple times and for several years.

    Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.

    I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural moderate/severe hearing loss in both of my ears L>R. Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.

    It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.

    Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.

    The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.

    Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!

    I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!

    I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.

    I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.

    Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.

    After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.

    I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.

    Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!

    I have a Facebook page at: Link to my ASLSUZYQ Facebook page

    I have a Facebook group called “ASLExpress” at:Link to join Facebook group ASL Express

    Lastly, I have an ASL group for allowing people to post ASL covers in a safe place, called “ASL Song” at: Link to ASL Song Facebook group

    “Silent Impressions Productions” & I’m 2nd left
    Me Interpreting at church before MVA
    Me Interpreting a Song in “Silent Praise@ group

    Me working at Deaf preschool
    I was in newspaper when I taught elementary kids

    My hearing aids