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.
  • Fight For Our Lives


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    Hello Luvs,

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

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

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

    or click the link below

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

    Fight for our LIves -Full Video Here

    Don’t be afraid of opioids


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

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

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

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

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

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

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

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

     

    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

    A Post About Bupenorphrine from Dr. Fudin


    Here’s some much needed information about Bupenorphrine. It’s written by Dr Jeffrey Fudin at: paindr.com/buprenorphine-so-misunderstood/

    Please remember that this medication is best used for people who have ongoing pain issues and who are also recovering addicts. It’s a mild analgesic at best and doesn’t work very well for people with chronic pain conditions, alone; without addiction.

    Also, remember that you must be taken off of this medication for a couple of weeks prior to any surgeries. If not, then they’ll have a difficult time putting you under deep anesthesia. Of course, this is everyone’s greatest fear going into surgery. So just be prepared. Read up about these medications and be knowledgeable. Don’t just take whatever your Dr is offering, but research it ahead of time. It works for a certain group of pain sufferers, but it works AGAINST opioids, in your body. Here are a couple of my articles regarding this medication and also Suboxone and Naloxone:

    About Suboxone, Buprenorphine and Naloxone/

    And this one:

    More-About Bupenorphrine, Suboxone/

    Then there’s also this video:

    Pain, Politics & Suboxone, Bupenorphrine

    Strength Lies In Numbers


    Let me introduce you to our newest family member. This is our first & only grandson, “Baby Bryce” aka “Bubba”. He was taken by ambulance from the pediatricians office on Friday morning (11-30-18). He was de-stating during feeding. He’d turned blue and his oxygen went as low as 40%. I received a phone call from my very frightened youngest daughter (his Mommy) & then I was sent the photo above, of my sweet newborn grandson in an ambulance. He looked so small and so helpless and that is exactly his his mommy & daddy felt. It is precisely how I felt as a mother and a grandmother. It’s been 5 days……

    I want to update you on baby Bryce; but first I want to say what amazing daughters, their in-laws & son in laws we have! When they say “it takes a village to raise a child” I now know the true meaning of this. I also know the true meaning of “strength lies numbers”….. it’s been a difficult time seeing my daughter struggle, weep and see her newborn baby, our sweet Baby, Bryce struggle to breathe and watch his oxygen go down to 40%. Our usual jolly son in law has become serious over these last 5 days. They are living in a nightmare of fear. We all are. But as parents, it’s the #1 fear to feel & be helpless while doing all that you can to be there for your child. All the while, Drs & nurses at Motts Children’s Hospital, are life savers and thank God for their healing skills.

    But we have banned together as a family and I admire the love and strength that I’m seeing. We got the sheer joy & chance just a few weeks ago to have a couple of “sleepovers” with our dear, sweet Kiera when her baby brother was born. We went back twice on the last day (we have a kitty at home who’s afraid of most everything & everyone so we chose to make the drive back home to check on her for a few hours) to make sure we had the pleasure of being there when they brought baby Bryce home and to make sure Kiera always felt safe & loved while Mommy & Daddy were at the hospital. We went back for several days to be there for the happiness, joy and to do whatever is needed to keep “my own baby” feeling safe and loved and to help keep her firstborn baby, Kiera, in some sort of routine.

    Last Friday morning I heard the fear in my youngest daughters voice. I saw the photo of our beautiful, yet fragile 2 1/2 week old newborn baby, Bryce, being put into an ambulance. My heart was in my throat, my stomach was in knots & tears filled my eyes. This is where I asked God to please make me as strong as I’ve ever been. *(side note: since the majority of my pain medication has been taken away, I’ve literally been sitting in my recliner the majority of every day). I asked for strength so that I could do whatever was needed to keep my youngest daughter, Amy & her little family feeling as safe & good as possible.

    I’m so thankful that our son in law, Grant (who is such a great father), has been able to come back at night and wake up with Kiera in the mornings. He’s been able to juggle all of this with great valor! He’s been there for my daughter, his daughter & his son. Daddy’s there when Kiera to wakes up. He’s been there to give her breakfast & 6:30 am lunch at 11:30 am. He puts her down for a nap at 12-12:15 pm.. He then goes back to hospital to be there as well. We’ve been getting there during nap time and we have had the pleasure of having dinner with our darling Kiera. We’ve had the extra special joy of putting her to bed and watching over her as she sleeps soundly.

    Grants parents have been there with him and Kiera most every morning and they’ve spent many hours, being there with us and with Kiera, in the evenings. They are awesome people and Kiera adores her Grandma & PawPaw. The past couple of evenings, Grants mom, Kiera & I have hunkered down to watch the “Holiday Trolls” movie. Kiera wanted to be between her Grandma and me, with the blanket over each of us. If Grandma or I had to get up for some reason, she would quickly tell us to “come back” and hunker down with her. She’s so adorable. She’s always saying “huggin” when she wants or needs extra cuddles or reassurance. On Sunday, there was not much going on with a skeleton crew at the hospital and so Grant and his parents were there with Kiera. While we stayed at home & did a few errands & went to a little extended family dinner outing.

    Amy has been a champion throughout this ordeal. She’s missing her sweet Kiera and her heart is torn in two places, as only a mother or father knows. So Grant took Kiera Sunday afternoon & is taking her today to see her baby brother and her Mommy. Amy has not left her sons side for even a moment! My eldest daughter, Jessy is a very thoughtful person and she went up to the hospital Saturday and brought Amy an entire brand new outfit so she could shower & change clothes in Bryce’s room at the hospital. She was there several hours with Amy & Bryce during some testing. She had dinner from Panera, delivered to the hospital for Amy, Kiera & Grant. Jessy even brought a unicorn headband for little Kiera. She’s juggling her own family of 4, but she’s been calling Amy several times daily.

    Amy’s friend, Sara, went to the hospital & brought Amy and Grant some food & stayed there several hours too.

    We are blessed to have the best son in laws and all of their parents as well.

    All of us are working together to make sure that Amy, Grant and Kiera are as settled as they can be. We are trying to pull together as one family, while the Drs figure out what’s going in with our dear little Baby Bryce.

    Nothing else matters right ggnow, except that this little guy and his Mommy get back home and the “Fab 4” is back at home together again.

    Now, I have to add that my soul-mate, My darling husband, Craig, has also been a champ!! He’s been driving the 1 hour drive there in midday and home late at night. He’s offered to get groceries and do laundry (which Grant has already taken care of!). He’s carted our home accessories, my favorite food & drinks back & forth and he’s played and read with Kiera. They adore eachother and his playfulness makes her giggle. He is my rock! I thank God for him every day.

    Tragedy can bring out the best or the worst in people. In this case, the best in everyone has been shining through. To my daughters, their husbands & our grandchildren; “We are here for you all, through thick and thin. We will be here for you always. As long as humanly possible.

    Tonight when Grant takes Kiera back home and puts her to bed, we will be going to see Bryce and Amy. I can’t wait to hold them both in my arms. We don’t know what is wrong with little Bryce yet. We are hoping it’s some kind of sucking, breathing & swallowing issue that will get better with some Occupational therapy. The Dr.’s are still contemplating a lung issue and test. We will know more soon, I pray.

    For now please keep this little guy in your prayers. Please keep his big sister and his Mommy and Daddy in your prayers as well. God made families for a reason. It’s so clear to me that nothing matters as much as the lives that he gives us & that we help bring into this world. Strength truly does lie in numbers. I’m so thankful for those who’ve been surrounding us with love, kind words & positive energy. I’m thankful for the families God has blessed my daughters with in this life.