Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same
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.
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.
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)
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:
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.
My fellow advocate and friend, Bob Schubring sent me this message via email. I wanted to share with his permission. It’s regarding a bit of a turn around regarding this under-treated & untreated pain crisis. So without further ado, here is the message sending love & light:
“I’ve taken the liberty of clipping and dropping the entire article below. It is compelling and I believe highly representative of the experience of many chronic pain patients. Please feel free to reference these published findings in your own editorial or advocacy work. I also attempted to submit a comment, but NEMJ isn’t accepting input from non-subscribers. I’ll look for a comment gateway direct to the editors.
Title: Reported Outcomes for Mister O are Highly Representative
As a non-physician advocate for chronic pain patients with 22 years experience, I see the story of Mr O repeated widely and horrendously. The current regulatory environment on opioid analgesic therapy is grossly distorted by mythologies about who becomes addicted and from what sources. Public policy is actively denying treatment to hundreds of thousands of people in agony. Doctors are fleeing practice, deserting their patients; those who do not flee are refusing the therapies that are often the only effective measures.
The largest mythology is the least acknowledged: physician over-prescribing did not cause and is not sustaining our public health crisis in addiction and mortality. CDC statistics reveal no cause and effect relationship between State by State prescribing rates vs opioid-related mortality from all sources, legal, diverted, or illegal. Contribution of medically managed opioids is so small that it gets lost in the noise of street drugs. Moreover, the demographics don’t work and never have. Seniors have the highest prescription rates and the lowest mortality due to opioids. People under 30 are six times more likely than seniors to die of opioids.
Structural Iatrogenesis — A 43-Year-Old Man with “Opioid Misuse”
Scott Stonington, M.D., Ph.D.,
and Diana Coffa, M.D
Mr. O., a 43-year-old man with severe, destructive rheumatoid arthritis, had been receiving acetaminophen–hydrocodone at low doses from his primary care provider (PCP) for 15 years. He worked in an auto-parts factory in southeastern Michigan, and pain control was essential to maintaining his employment. His pain had been well managed on a stable regimen, and he had not shown evidence of opioid use disorder.
In 2011, his primary care clinic began requiring patient–provider agreements (“pain contracts”) and regular urine drug testing. Mr. O. participated willingly, and his tests were consistently negative for unprescribed substances. In 2014, his insurance company began to require annual prior authorization for all controlled-substance refills. Although there were small delays in receiving medication once a year when the authorization was due, the patient was able to keep his pain level stable on his usual regimen.
In 2016, Mr. O.’s PCP retired, and his care was transferred to another PCP in the same office, who followed the patient’s existing pain-management plan. The same year, the insurance company began requiring more frequent prior authorizations and then that prescriptions be sent to the pharmacy every 15 days. The new PCP was occasionally late providing these prescriptions and approving prior authorizations because of the required multistep interactions with the insurance company. Mr. O. did not own a car and had difficulty making frequent trips to the pharmacy. He began to have several-day gaps in medication. During these gaps, he experienced severe pain and mild withdrawal, as a result of which he performed poorly at work and received a citation. He became very concerned about losing his job.
Mr. O. made an appointment with his PCP and requested an increase in his number of pills, wanting to “stockpile pills so that I’ll never run out.” The PCP noted that Mr. O. seemed nervous during the conversation. She noted in the chart that the interaction “made her uncomfortable.” She knew that the previous PCP had reported that Mr. O. had shown no evidence of opioid misuse, but in the current environment of vigilance regarding the risks posed by opiates, she did not feel comfortable increasing the number of pills.
Three months later, the patient submitted a urine sample that tested positive for unprescribed oxycodone. When the PCP discussed the result with Mr. O., she learned that he had obtained oxycodone from a friend during one of his gaps in medication.
The following month, oxycodone was once again found in his urine. Already overwhelmed by the frequent need for prior authorizations, and noting that Mr. O. had “violated his contract” by submitting two urine samples containing unprescribed opioids, the PCP referred him to a local pain clinic.
The wait time for an appointment at the clinic was 4 months. The PCP continued to provide prescriptions during that period, planning to stop prescribing as soon as Mr. O. had his first appointment. When he arrived at the pain clinic, Mr. O. learned that it had a policy of not prescribing opioids for the first two visits. Facing a prolonged period without his usual regimen, and having previously failed to obtain any “extra” acetaminophen–hydrocodone from his PCP, Mr. O. began purchasing his full narcotic regimen (in the form of oxycodone) from a friend.
Social Analysis Concept: Structural Iatrogenesis
Through a series of events, Mr. O.’s therapeutic relationship with his PCP deteriorated, and he became compelled to obtain medications outside the medical setting, which in turn increased his risk of overdose, as well as his risk of arrest for possession of unprescribed opioids. This shift was not precipitated by physiological changes in Mr. O.’s disease, need for medication, or personal attributes. Rather, it was caused by structural forces outside his control, ranging from clinic policies (pain agreements, a drug-testing initiative, a moratorium on prescribing) to corporate bureaucracies (insurance companies, factory management) to larger-scale social forces (poverty, lack of availability of transportation, lack of opportunities for work appropriate for someone with a painful condition).
We call this type of harm “structural iatrogenesis” (seebox). Drawing on a long history of social science scholarship,1the use of the term “structure” emphasizes that Mr. O.’s poor outcome was determined by social forces and structures outside his control. The term “iatrogenesis” specifically focuses on the harmful role of bureaucratic structures within medicine itself. In Mr. O.’s case, many of these structures had been instituted to protect patients at risk for opioid use disorder: clinicians acted according to prevailing standards of care in chronic pain management; his prior clinic’s pain contract and urine drug screens were meant to prevent deviation from prescribed opioid use that might place him at risk for overdose or addiction; the pain clinic’s protocol of delayed prescribing was meant to prevent patients from “shopping” for opioid prescriptions; prior authorizations required by the insurance company were intended to reduce overprescription of potentially harmful (and costly) medications. But these systems were not beneficial to Mr. O. in the context of his economically and socially precarious life, which was shaped by a lack of transportation and a need to perform painful manual labor for economic survival.
Structural iatrogenesis is the causing of clinical harm to patients by bureaucratic systems within medicine, including those intended to benefit them.
Structural iatrogenesis is a type of “structural violence,” defined as the systematic infliction of disproportionate harm on certain people by large-scale social forces such as resource distribution and hierarchies of race, gender, or language.2,3“Iatrogenesis” points to the causation of such harm by bureaucratic systems that are potentially under clinicians’ or health systems’ control.4
Clinicians who identify structural iatrogenesis may alter structures or create action plans to prevent them from causing harm. Generalizing from Mr. O.’s case, we would offer the following approach:
1. Recognize and alter structures that systematically harm patients.Clinicians may be the first to identify a structure that is systematically harming patients and can then advocate for or directly effect change. For example, in the 1980s, the Food and Drug Administration and physician organizations recommended that women undergo pelvic exams before receiving hormonal contraception. Some clinicians noted that these exams were a barrier to contraceptive access and stopped requiring them in their own clinics. By the 1990s, these local changes led to removal of the recommendation from national policy, which increased access to contraception and rates of effective use.5
Similarly, if Mr. O.’s PCP noticed that her clinic’s opioid-prescribing policy generated frequent gaps in medication coverage for patients in general, she could have advocated for a new approach. It’s important, however, to avoid the pitfall of thinking that structural harm emerges only from “broken” systems. All structures carry a risk of harm, even when they are functioning “properly.”
The policy in Mr. O.’s PCP’s office might have been working well for most patients, but it turned out to be a poor fit for Mr. O.
2. Bend policies according to context.Attempts to standardize clinical care in order to ensure high quality often inadvertently lump complex phenomena into simplistic categories. Such oversimplification, in turn, can create structures within clinical care that harm patients more than help them. By questioning how such categories (such as “opioid misuse”) apply to particular patients and types of patients, clinicians can work to reduce the risk of structural iatrogenesis. The label of “opioid misuser,” for example, negatively affected Mr. O.’s care by failing to acknowledge reasons that he might be acquiring medications outside the clinic.
Similarly, clinic policies that penalize patients for arriving late to appointments disproportionately harm people who don’t own a car or control their work schedule. And policies of rewarding clinicians on the basis of quantitative measures of practice quality, such as reductions in glycated hemoglobin levels, may ignore complex disease interactions and the social factors contributing to diabetes and may create an incentive for clinicians to drop particularly sick patients. Instead, one might identify patients with particular vulnerabilities and adjust policies on the basis of their life context 3. Address implicit agendas head-on.Mr. O.’s care deteriorated when he was labeled an “opioid misuser.” This designation was putatively a clinical diagnosis, but it also marked a tacit category shift from “good patient” to “bad patient,” reflecting the mixing of clinical reasoning with moral judgment. Similarly, the insurance company’s rationale for requiring more frequent prescriptions mixed a harm-reduction agenda (reducing risk for addiction and death) with a profit motive (reducing payouts for medications). Mr. O’s poor clinical outcome was due in part to tensions between these implicit agendas. Clinicians often consider such agendas to be outside their purview, but given that they have such a significant impact on clinical outcomes, it may be more effective clinically to identify these agendas, assess their interactions, and decide which ones to prioritize. The staff of Mr. O.’s clinic, for example, could recognize the moral judgment involved in the diagnosis of “opioid misuse” and instead set an explicit goal of identifying behaviors that could increase a patient’s risk of addition, overdose, or dangerous side effects. They could then assess whether their established protocols were achieving that goal and how to balance it with other goals.
At Mr. O.’s next visit, his PCP expressed concern about risks of overdose and legal harm from use of unprescribed oxycodone. She persuaded him to return to the pain clinic, and in the meantime she agreed to continue prescribing his opioids. A medical assistant appealed for an exemption to the insurance company’s 15-day prescription rule, citing Mr. O.’s lack of transportation, fragile work circumstances, and long-standing treatment. At the time we wrote this article, it remained unclear whether these modifications would stabilize Mr. O.’s treatment and prevent his use of unprescribed opioids.
The editors of the Case Studies in Social Medicine are Scott D. Stonington, M.D., Ph.D., Seth M. Holmes, Ph.D., M.D., Helena Hansen, M.D., Ph.D., Jeremy A. Greene, M.D., Ph.D., Keith A. Wailoo, Ph.D., Debra Malina, Ph.D., StephenMorrissey, Ph.D., Paul E. Farmer, M.D., Ph.D., and Michael G. Marmot, M.B., B.S., Ph.D.
The patient’s initial and some identifying characteristics have been changed to protect his privacy.
From the Departments of Anthropology and Internal Medicine, University of Michigan, and the Veterans Administration Medical Center, Ann Arbor (S.S.); and the Department of Family and Community Medicine, University of California, San Francisco, San Francisco (D.C.)
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 othernews 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!!
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 thatCindy 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:
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.
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!!