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

    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

    Please send Your comments Re: HHS Draft for Pain Best Practices


    Hello Luvs,

    I just wanted give my readers a little “nudge” & remind you all to visit the The HHS Task Force online, which has provided a 90 day public comment period (ending April 1st,2019)

    Click here to post your comments re: the HHS Draft for Best Practices (90 day comment period)

    ****In the Search Box, put these words so you’ll get to the correct place for commenting: HHS Draft for Best Practices.

    I implore you to send in your comments. This is our chance to have our voices heard. Please go to the above link, in order to have your voice heard regarding the Draft Report to HHS. * my comments are copied & pasted for you below.

    There are three different ways that you can send in your comments regarding this Draft report:

    **When you write, email or post your messages regarding the Draft Report, please refer to this Docket Number:HHS-OS-2018-0027

    How to Submit Comments:

    1) Visit this Federal Portal at: http://www.regulations.gov

     2). Or you may Email topaintaskforce@hhs.gov

    3) or use USPS and you may Mail written comments to:

    U.S. Department of Health and Human ServicesOffice of the Assistant Secretary for Health200 Independence Avenue, S.W., Room 736E,Attn: Alicia Richmond Scott, Task Force Designated Federal OfficerWashington, DC 20201

    These are my thoughts. I will be condensing them into being my comments to the HHS Best Practices (again, comment period goes until April 1,2019:

    • I agree with the “individualized patient centered care”. But allow the Dr./Patient relationship to the determine treatments. But don’t allow the government, pharmacists/pharmacies, to override the treatment, including type, class & dosage of pain medications. Pain management Drs. went through, in many cases; 14-15 years of extra education. They know more about what’s best for the patients.
    • Opioids taken as prescribed, have less harsh & lasting side-effects than many other medications that are prescribed freely for patients today (such as Bupenorphrine, Suboxone)
    • 1) Many medications can cause death, if an overdose occurs.  2) Many medications can cause physical dependence, including heart, blood pressure and even insulin.
    • Pain Medications shouldn’t be decided on by what illness(es) a patient is living with. Pain is subjective and the CDC, in their 2012 response to Andrew Kolodny, stated that there was no research to prove that there’s any difference between cancer and non-cancer pain. Mr. Kolodny was trying to say that cancer pain was the only worst pain. There are a number of illnesses nicknamed “the suicide disease”,( including: RSD/CRPS, A.S., T.M. & others). People with comorbid highly painful conditions, should not be lumped & labeled as a sum of their illnesses. Everyone metabolizes differently. Some people may do well on a certain medication, while it makes others desperately more ill (due to the horrible side effects).
    • Nothing should ever be dictated “across the board” . Never should one rule be applied to 100 million chronic pain Patients. Some people living with illnesses such as Ehlers Danlos syndrome, for example; don’t metabolize medication like most other people do. They may need a much higher dosage than what the recommended ceiling of 90MME allows. By the way, when did recommended become law?
    • The CDC Guidelines were supposed to be just recommendations for General practitioners. But not even a year later, pain management Drs started being hassled by the DEA & other government & law enforcement officials. In 2018, they turned into “laws”. In many cases, good Drs. Have been losing their livelihood, their entire life’s work, because the DEA thinks that they had too many pain patients taking higher doses of opioids! It’s normal that Pain clinics would have a much higher number of people taking higher dosages of opioids.
    • Many persons who are living with several lifelong chronic painful illnesses, do not wish to have: massage, Reike, acupuncture or anything involving touching. People for example with CRPS, (systemic especially), cannot bear the pain of touching like this.
    • Many of those who live with horribly painful Rheumatoid disease, Neuropathies, Ehlers Danlos Syndrome & others, may get worse from doing things like Yoga, Tai Chi and even PT. (I had 9 years of PT & it made me worse & not better,many times)
    • Meditation most often doesn’t work well for the patients living with anxiety &/or PTSD, for example. *If it does help a little; it still does not lower high amounts of pain for the rest of someones life. Not enough to give someone their life back after a catasrophic painful event.
    • Why should anyone be forced to get an invasive surgery over taking a simple oral pill? Again, any medication is dangerous if taken incorrectly or by a person other than the intended patient. Therefore demonizing only opioids makes no sense.
    • Many persons aren’t candidates for the SCS and/or intra-thecal pain pumps. Many living with several painful illnesses have also compromised immune systems (CVID +others).
    • It appears that nobody on this HHS task force lives with chronic pain, in high amounts, due to lifelong, high pain chronic illnesses? Because they should know that no amount of meditation, injections or tai chi, would end ongoing continuous life long chronic pain!
    • *meditation, music therapy and aqua therapy may help to lessen pain for a short period of time (**if the patient doesn’t have an aversion to being in water or have open sores due to secondary illnesses)
    • As you can see, there’s no one fix for everyone. Mostly because we are individuals who must have individualized care. Nobody should be putting one group of persons with physical chronic pain or PTSD, ahead of another group of survivors. You don’t know what horrors anyone has been through. A soldiers PTSD may be horrific. Also horrific may a grown up’s PTSD. Someone who had lived a life of horrors in their own home (which should’ve been a safe place), at the hands of abusive family members.
    • Please don’t prescribe dosage limits “across the board” for everyone. That’s not keeping with the physicians code of ethics “to do no harm”!
    • Don’t pick & choose what medication or dosage by each illness or condition. Some medications work for one person and don’t help others
    • Give the physician back their right(after years and years of education & experiences) to diagnose and treat people with ongoing lifelong pain. Keep the Dr/patient relationships together, without intrusion or interruption in patient care!
    • Please keep in mind that chronic pain does not = addiction.! Just because someone needs opioids to help high amounts of pain (*that will most often, never go away), does not make them an addict. It shouldn’t give them the label of “substance use disorder” either!
    • Do Not make the Hippa privacy laws a joke or obsolete. Confidentiality matters! In order to have any confidence in your health care team, you must trust them. What I’m saying is that the police departments and other employees of the government or anywhere, should NOT BE GIVEN ACCESS TO THE MAPS*! The MAPS are already invasive enough without giving access to everyone!

    There are a few good parts to the draft:

    • The suggestion to treat each patient on an individual, patient by patient basis.
    • Stop raiding innocent Drs offices.
    • Stop taking physicians livelihood/careers away because someone at the top of the ladder at the HHS, CDC or elsewhere; lost a brother, mother or best friend, to opioid abuse &/or addiction, that ended with a death, loss and then turned into bitterness!
    • Give more hours of education in pain management to medical students

    Lastly, opioids are a safe, effective and an inexpensive way to treat lifelong chronic pain, for many patients in this category. They help & work for so many! Especially legacy patients with multiple high pain comorbidities, depend on opioids to have some semblance of life. I know, because it happened to me and I lost my LA/ER pain medications in Sept 2018. I have a much less full life now.

    The PTSD, that chronic pain patients are living with after being legacy patients who had been doing well taking opioids for a decade or two or three, is a nightmare! People are becoming a shell of their former selves. Persons with multiple & painful comorbidities, who were able to possibly do a job, be a mother, father, caregiver or grandmother, while taking opioids (*also btw, never getting high from their opioids!); are doomed to live a half-life in bed or a recliner forever. Many are committing suicide.

    I read some nasty comments on an article recently (I’ll look for that article. Sorry, I can’t remember where I saw it, but I will find it and post for you asap). There were comments from a person who lost someone to an opioid overdose/addiction. She said she was  “tired” of hearing about pain patients contemplating suicide. Tired of seeing where chronic pain patients have written in whining that “if they don’t get their pain meds back they will kill themselves”. Well, I pity that lady because she’s obviously never gone through anything that involves long term, never ending high amounts of chronic pain. The chronic pain population needs to know that there is hope. Because someone doesn’t contemplate suicide, where there is “Hope”. So someone please tell that woman to “chill out” and to “be kind”. Also, tell her not to cut down, put down, belittle or be insidious about life long, never ending, high amounts of daily chronic pain.  Unless she is in my shoes/our shoes, our wheelchairs, walkers, crutchs, braces and motorized scooters, don’t judge!

    Unless you’ve lived with high levels of continuous chronic pain that you know will never ever stop; don’t judge the chronic pain patient who chooses suicide over being a burden to their loved ones. Maybe they have no loved ones and cannot bear to be alone forever with such high amounts of under-treated or untreated pain? Don’t judge someone who’s been doing well for over a decade and suddenly they lose their pain relief and they’ve resorted to “living” a half-life in their bed or a recliner.

    These drafts really need more work. There are a lot of contradictions. Tylenol/Acetaminophen is very dangerous and can kill it cause liver failure if taken continuously. Which is what a chronic pain patient will need! NSAID’s cause kidney failure and anyone who thinks Tylenol or Aspirin will help pain levels at a 7,8 or above; doesn’t know anything about pain. In fact, they’ve never lived with ongoing chronic pain illnesses that are Incurable.

    Lastly, meditation, grounding, yoga & aqua therapy are nice for PT patients rehabilitating. They’re fine for some people as an addition to pain medication therapy. But they’ll never work alone to end or relieve high amounts of pain for a person who will most likely need pain control forever. It’s just impossible for anyone to go several times weekly and pay for PT forever! Not everyone has access to a pool. Then there are those of us who have open sores from secondary illnesses or from systemic autoimmune and other issues. I’m sorry, but “grounding” is just silly and I’m entitled to my opinions; as are each one of us.

    The above paragraphs are my thoughts about some of the HHS Draft for Pain Best Practices. I’ve got to condense these thoughts so that I can actually leave a comment. With the government shut-down, I’m not sure exactlly what will be happening to this side of things? If I find out any more, I promise to inform all of you.  But lets still get those comments posted before April 1, 2019. If we follow the rules, then hopefully someone will hear us. If we wait to see what happens, it may be too late.

    Remember not to be long winded. My comments will be condensed version of my issues with the HHS Draft. I will post it for you once I’ve gotten it all set up on the .gov website). Tell them who you are and how you feel about the HHS Draft for Pain Best Practices. Let them know that there are many contradicions in this draft. There are so many things wrong with telling someone who is living with #’s 7,8 or 9 on the pain scale, to take NSAID’s or Acetamenophin. Theres definitely something ludicrous about taking opioids away from someone who’s been doing great with them for a decade or two or three. Opioids are harmless, with very low or no side effects. When taken properly as prescribed for long term chronic intractable pain.  On the other hand, if you research Suboxone and Bupenorphrine. They have horrific side effects and you cannot taper off of them slowly because the medication works against you if you attempt to do this. I have  received several written accounts from chronic pain patients who believed in their physicians and blindly took what was offered to help their pain, as a last resort. They thought it would be better than nothing. (*these accounts will be in a future blog post).

    MY OWN COMMENTS:

    I have been living with high amounts of chronic pain on a daily basis since a catastrophic car accident in 2002. I did all that was asked of me as far as having 8 surgeries, 9 years of PT, 3 years of TBI rehab and 3 years worth of pain clinic Biofeedback and  injections to my knees, shoulders, neck and spine.  I am not a candidate for a pain pump, due to CVID. I tried many medications and most either made me deathly ill or just had horrible side effects that added to the pain. My story is not unique. Many thousands of chronic pain patients attempt to do all that they can do, prior to taking opioid pain medication. When pain is lifelong, whether you are old or young; the idea of staying in a state of high chronic daily pain for decades upon decades, is daunting.

    This draft needs much more work. There are too many contradictions.  There especially needs to be more done for the legacy patients who have been doing well on Opioid therapy for chronic pain.  Legacy patients, like me, are being put into “no win” situations. We have had our medications forcibly taken after doing relatively well for years. Forced tapering is bad for anyone.  It is life altering, dangerous and has taken lives. Why would you mess with something that is not broken?  If someone has been doing well, how could you fathom stopping the regimen that gave them some semblance of a life?  Then what? Then these people are unkowingly prescribed horrible meds like Buprenorphrine / Suboxone.  After much research, it seems like most of this manufactured “opioid hysteria” is for money making. That is shameful to use and even kill innocent people just to allow someone else to get rich.

    Why are we making insurance companies pay for all of this acupuncture, massage and yoga etc? Those dont work for long term chronic high pain illnesses where the patient deteriorates as the years go by. The majority of chronic pain patients that I know, say that they don’t want to be poked or even touched, because it hurts too much. This is not a solution. Please try to understand the reality of this situation. Don’t allow people who are living with high emotions, to be in positions of power, in charge of important decisions for the chronically ill. Persons with powerful positions who are greiving & who have lost someone from an overdose shouldn’t be making decisions that affect & involve millions of lives. Most people who have lost a family member or close friend from an overdose, won’t be rational in their decision making. Then they end up punishing an entire community of innocent people because they lost someone (*usually their loved one had overdosed by taking someone else’s prescription or illegal/illicit drugs to numb psychological pain).

    Please stop demonizing Opioids and selling the idea that these inanimate objects cause addictions and drug overdose. Addiction is a gene that someone is born with. It shows up in some people and not others. Opioids do not kill people any more than guns kill people. It is when the opioids or the guns who get into the wrong hands. Then the people behind them choose to make terrible decisions and others then die from drug overdose, homicide or suicide. Please remember that opioids are inexpensive, accessible (or they were) and they have few or no side effects. They have been helping many chronic pain patients for years and years. The medications are not “bad”, it is the people who obtain them illegally and then do things to the medications or with them, other than the intended purpose. That is what is dangerous and killing people. 

    Chronically ill persons living with high pain illnesses cannot take Tylenol or NSAID’s for the rest of their lives without horrible effects and outcomes. Those medications are not made for long term. They cause liver and kindney failure and worse. Also, this same group of ill citizens, are usually unable to do or pay for complimentary therapy treatments for decades at a time. Lastly, please leave the pain care physcians or any physician trained properly in the management of chronic intractable pain, to make the decisions that affect the pain community. These Dr’s have been highly educated for many extra years, in order to learn how to treat chronic pain.  Stop politicians, PROP, Addiction specialists, pharmacists, the CDC, FDA  and insurance companies from making medical decisions that should be left up to the Dr. and patients themselves. Thank you! Sincerely, Suzanne Stewart