Accessibility A Legal Right


Hey Everyone!

This is a great article from Rikki Poynter and it hits home with me, too! Many of my friends who live with either Deafness/Hearing loss &/or disabilities requiring the use of wheelchair,walker or cane etc, may feel a connection to the stress that Rikki Poynter shares in this article.

Some of us are feeling also the stress of not have accessibility to proper medical care for our high impact chronic pain illnesses. This has been constant since the CDC Guidelines were implemented in 2016, without any pain physicians present at the discussions.

I wanted to share this article because I can feel for her experience and so many people don’t “get it”. Here’s the article: http://www.rikkipoynter.com/articles/event-accessibility

For information or questions regarding the ADA or “Americans With Disabilities Act”, please visit: Link to the ADA website

You can follow Rikki Poynter at Twitter, Instagram and Youtube at: https://www.youtube.com/user/rikkipoynter

And on Twitter:
Rikki Poynter on Twitter
(Check out Rikki Poynter on Twitter: I’m deaf and disabled and, you know, stuff. YouTuber & Public Speaker | #NoMoreCRAPtions | PATREON: https://t.co/BsMiMuxDF5 | rikkipoynter@gmail.com)

Link to Rikki Poynter on Instagram

Just a Photo of me with my purple glitter aids
Me with my family in town, on a Summer day
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Testimony From A Pain Patient, Re: Suboxone And Bupenorphrine


This is an email that I received from a chronic pain patient, Chuck Malinowski. He wanted to let me know about his experience with Suboxone/Bupenorphrine. He asked me to share it, after he had read my 2-3 articles about these harsh drugs that are being forced upon chronic pain patients at this time. The side effects from these partial opioid agonists, are much worse than our average opioids. While their analgesic effects are very low. They don’t do much in lowering the high impact pain that many people with long term, painful chronic illnesses live with. They have, however been proven to take the edge off of some lower pain illnesses in drug addicts who have to take it bcz they are unable to take “regular” opioids. The data suggests that it only really helps a little bit with addicts who need a bit of pain relief.

All of my research is backed up and linked to articles and research. Some is straight from the manufacturer of Suboxone/Bupenorphrine:

1) Regarding Bupenorphrine & Suboxone

3) About Suboxone, Bupenorphrine & Naloxone

4). More About Suboxone & Bupenorphrine

Here are some links to more articles where I researched information and came to these conclusions:

*************************************

(*This is where I got some of this information):

1. https://www..com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts

2. https://www.drugs.com/suboxone.html

Articles that Explain The Bad effects of suboxone, bupenorphrine etc.

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

***Below is an article straight from a patient:

Here is one Testimonial:

“Absolutely do not let your doctor put you on buprenorphine.
DO. NOT. DO. IT.
Unless it is an absolute life-threatening medical emergency, do not ever allow anyone to put you on either buprenorphine or Suboxone, which is a medication made with buprenorphine and even worse, and much more expensive.
Buprenorphine causes such a severe, and rapid physical dependency that after only using a comparatively small dosage, 16mg per day, for a single month it will take you a minimum of four, but probably five or six months of absolute hell to get off of.
This is not a medical opinion, or medical advice, this is the reality of what I am now living with, and have been for more than 10 weeks.
I was put on buprenorphine when my implanted pain pump ran out of morphine sulfate and I went into severe acute opiate withdrawal.
It was basically an emergency situation, the level of medication for my pain pump was the oral equivalent of 160mg of morphine a day, it was severe opiate withdrawal.
I did not have an addiction to opiates because this was intrathecal morphine – intrathecal delivery is when the medication is delivered in liquid form directly into your spinal column – but my body had a tremendous physical dependency.
Even so, I seriously regret being put on buprenorphine even if it was on emergency basis.
I was on 16mg of buprenorphine per day for five weeks after getting out of the hospital following treatment for severe acute opiate withdrawal.
The treatment was being put on Suboxone, later changed to just straight buprenorphine.
Within three weeks I started experiencing severe migraine headaches, ear aches, severe abdominal pains, diarrhea, severe sleep disturbances in the form of horrific nightmares – nightmares so bad I was afraid to go to sleep.
I also experienced drastic changes in body temperature, one minute I felt like I was roasting alive, the next minute I felt like I was freezing, sometimes I felt both at the same time.
I have been trying to get off of buprenorphine for 10 1/2 weeks now. I have been using every trick in the book to manage the horrible withdrawal symptoms. Herbal supplements, herbal teas, detox supplements, vitamins, OTC medications, etc.
And the withdrawal symptoms are truly horrible, even when simply reducing your dosage by 25%. It’s just as hard to cut your dosage from 5 mg a day to 4 mg a day as it is to cut your dosage from 16mg a day to 12mg a day.
This means that the closer you get to 0mg a day the harder it is to reduce your dosage, because you have to keep doing it by a relatively small percentage, 20 or 25% day over a period of two or three weeks.
It is so bad it gets to a point where you have to cut from 2mg per day, to 1mg per day – if you can even tolerate that big a cut at that point – to 1/2 mg per day, to 1/4 mg per day, to 1/8 of a milligram per day – and, according to my doctor, it can take weeks to do it. It took me 3 1/2 weeks of working at reducing my dosage from 6mg a day to 4mg a day before I could tolerate 4mg a day. It was extremely difficult, and painful every step of the way, and even so, I am suffering horribly.
Today is day number seven at 4mg a day. The last week has been unimaginably horrible – the entire process is unimaginably horrible – today is horrible, and I expect that I will feel like this for another week or two before I am stable at 4mg a day. 
Once I am stable – comfortable – at 4 mg a day I can try to start cutting my dosage to 3mg a day, and the entire nightmare process described below starts all over again, although in truth it never really stops it only gets less horrible, until you try and make your next dosage reduction.
At times feeling like I am burning alive, I feel like I am on fire inside and out. I frequently feel like somebody has put some horrible mind-bending drugs in my drinking water. Uncontrollable shakes and tremors. Uncontrollable whole body spasms were every muscle in my body suddenly goes completely rigid. Diarrhea. Severe sleep disturbances from absolutely horrible nightmares – my neuropsychologist tells me that nightmares are very common with buprenorphine. And you only have the nightmares if you’re lucky enough to be able to sleep in the first place. Or if you can even stay asleep because you’re going through such drastic changes in body temperature that you are frequently waking up and turning the fan on, or turning the fan off, or getting rid of the blanket, or pulling the blanket back on. 
Or, if you try and reduce your dosage a little too much, a little too quickly you wake up drenched in sweat with your clothes soaked through.
If you try and reduce your dosage a little too much, a little too quickly all of the above mentioned withdrawal symptoms are magnified several times over and it literally becomes a living hell. It can be as bad as full-blown acute opiate withdrawal from a high level of opiates. These are both things that I have lived through, so I know this from personal experience. 
Simply trying to get off of buprenorphine by slowly reducing my dosage over the last 10 1/2 weeks at a time has unquestionably been the single most difficult, painful and horrific experience of my life, aside from more than 10 years of Reflex Sympathetic Dystrophy.
I have advanced Reflex Sympathetic Dystrophy, also known as Chronic Regional Pain Syndrome. RSD/CRPS – as well as Trigeminal Neuralgia – has been called the most painful condition there is, it is also sometimes referred to as  ‘The Suicide Disease,” so when I say that getting off of buprenorphine is the most horrible and painful thing I have ever experienced that really means something.
I’ve already I’ve been weaning myself off buprenorphine for 10 1/2 weeks and I still have another 12 or 16 weeks to go – if I’m lucky. It may take even longer. And from what I have read, even once I have stopped taking buprenorphine completely, I can expect another month or two of significant withdrawal symptoms in the form of depression, anxiety, lethargy etc.
It is my personal opinion, based on more than 15 weeks of personal experience of being on buprenorphine, and 10 1/2 indescribably horrible weeks of trying to get off of buprenorphine, that this is a horrible medication, and for a chronic pain patient to use it as an alternative to opiates is a horrible mistake.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is a horrible scam.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is not only medically irresponsible, it is an outright lie.
Getting off of 40mg of hydrocodone per day after six months took two weeks and was no more unpleasant than a mild case of the flu.
With buprenorphine, it took 3 1/2 weeks to simply reduce my dosage from 6mg a day to 4mg a day and it was freaking horrible. I am still having extremely unpleasant withdrawal symptoms after being on 4mg a day for a week, and I expect this will continue for at least another week before I am stable.
STAY. THE. HELL. AWAY. FROM. BUPRENORPHINE.

Chuck Malinowski

******************

Regarding Buprenorphrine-Suboxone


Hello my friends! For this blog post you should probably grab yourself a cup of coffee and sit down to read this short story! I’m sorry that this article is more like a “short story” than a blog post! It’s twice as long as any of my normal posts would be. But this just meshed and I wanted this information available to you.

In my opinion, I would prefer no treatment than be forced to take some of these harmful/ horrific medications. By the way, I researched them and they are still not FDA approved for chronic pain patients.  In September 2018, a form of Bupenorphrine, a sublingual film, was FDA approved “for opioid use disorder. ” It was also approved for the maintenance of “opioid dependence”. But if your physician prescribes it for your chronic pain, “off label”; and you are not a patient with “Opioid use disorder” or an “Opioid abuser” then  you may possibly get a very low analgesic effect. Might as well take that Tylenol they’ve been pushing at us? It will help just about as much.  Well, you all know what I mean, right?

Here’s another thought:  Opioids, (*which are being demonized by our government now) can have a few side effects but normally they go away within a week or so after taking them. The side effects can be:

  1. Constipation
  2. Shallow breathing (but that is only if you take more than what is needed for your height/weight and medical conditions)
  3. Once in awhile you can get nausea and/or vomiting (but the nausea lasts a couple of days at the most.  I’ve not experienced vomiting from Opioids.

Here are the list of side effects for the FDA approved Bupenorphrine and Naloxone sublingual film (called Cassipa): Proof of these Side effects of this medication online

  1. oral hypoeshesia (numbness),
  2. glossodynia (burning mouth)
  3. oral mucosal erythema (inflammation of the oral mucous membrane *sores in your mouth*
  4. headache,
  5. nausea
  6. vomiting,
  7. hyperhidrosis (excessisve sweating)
  8. constipation,
  9. **SIGNS AND SYMPTOMS OF WITHDRAWAL**
  10. Insomnia
  11. **PAIN**
  12. Peripheral edema (accumualtion of fluid causing swelling in the lower limbs

**THESE PRODUCTS MAY ONLY BE PRESCRIBED BY DRUG ADDICION TREATMENT ACT (DATA)-CERTIFIED PRESCRIBERS. With this list of side effects and all of the warnings, how or why is is supposed to be OK to use, but other

***BELBUCA:  is another type of “opioid”, similar to the above, but without the Naloxone. It is also a partial antagonist. (**It is very different from the kind Opioids that most pain patients are familiar with. The opioids that we know are able to help alleviate high amounts of daily, round the clock, high impact chronic pain).

I visited the Belbuca online and their website has a bunch of videos showing people with chronic pain and how this medcation has supposedly helped them (they are paid actors most likely).  The list of effects appear to be much longer and worse, in my opinion. The list of bad effects on the majority of opioids that many chronic pain patients have safely taken for years; or even decades, appears to be much less toxic and life altering or even, threatening.  On that same page, they say that “Methadone maintenance is  helpful for people who don’t do well with buprenorphrine. But people (mainly addicts) have to visit a clinic daily to recive that treatment.”  Our favorite guy (*cough cough), Kolodny, says now that “Suboxone is a viable treatment akin to buprenorphrine.” *Also, did you know that once you take Bupenorphrine or Suboxone, you will be labeled an “addict” & no longer a chronic pain patient/warrior! See: Opioid Addiction Treatments). Kolodny ‘s trying to not only rid the USA, but the world possibly, of opioids and replace them with much more harsh opioids! Suboxone which he calls “akin to buprenophrine” has been proven to have none or a very low analgesic effect. If taken, this so called medicine, LABELS you for life as an “ADDICT”. Yes, you are labeled for life as an addict if you accept Kolodny’s “get rich scheme” & take these harsh addiction medications! They are very different from normal pain medications that most people with long term chronic pain illnesses have been doing well on, for decades! Suboxone & Bupenorphrine also have a long list of worse than horrible side effects. Why & how are these OK to give to sick people living with horrific amounts of daily pain? People who are seeking any kind of reprieve, relief from their painful existence in hell.

Please be aware of this crooked switch to these harsh addiction medications. Please understand that the cowardly physicians, who prescribe these meds, do not have the patients best interest at heart. Instead they’re lining Kolodny’s and others wallets and bank accounts.

All the while we are suffering and being lumped together with addicts (yes, they need help too. But that is their story to tell). I have testimonials a mile long from several persons who had been prescribed these harsh addiction medications & who’ve taken one form or another of Bupenorphrine or Suboxone. They said “it was the worst medication they’d ever taken and it has horrific side effects that are unrelenting & never ending. IF you dare try to go off of it, or taper down (*as you can do with the regular kinds of opioids that most patients are familiar with), those medications tend to pull you in even deeper. They’re designed to keep you addicted . They work against your body and majorly increases your pain so that you won’t stop taking it. You cannot ever go off of it “cold turkey”. If you try, then you may experience withdrawals that I’ve been told are hellish. Worse than anything I’ve ever heard about regarding opioid withdrawals.

In a future blog post, I will try to add more & organize them. I’ll let you read what others have sent to me. I have permission from several persons because they want you to know what they have had to endure; in order to save you from going through the same hellish experiences.

DISCLAIMER: *I AM STATING THAT THIS MEDICATION IS NOT GOOD FOR HELPING THE CHRONIC PAIN PATIENTS! BUT IT MAY BE A “WEAK ANALGESIC” THAT COULD HELP AN ADDICT, A DRUG ADDICT, WHO LIVES ALSO WITH CHRONIC PAIN! That’s what it’s good for!!

Trauma Resurfaces The Pain of Yesterday!


Many people go through life and are never held up at gunpoint, robbed or in situations of extreme fear with shooters on a rampage.

I’ve now gone through this twice in my lifetime, thus far. We recently visited Waco, Texas to see our daughter, son in law and two youngest grandchildren (ages 10 months and 3 years). My daughter works at Baylor University and had decided to take us all to the dining commons for dinner on our 2nd night in Texas, (10-2019). We arrived, when suddenly, an alert was texted to her husband’s and her phones. The alert told us to “take shelter immediately & await further instructions”. My daughter started to panic as any mother of two babies would! I was frightened but tried to stay calm for her and the babies. We had to be separated from our husbands. They were sent to the men’s restroom & my daughter, the 2 babies & I were sent to the women’s restroom.

We awaited instructions but we were huddled into the corner of a handicapped stall. Finally, an employee came & told us we were on “lockdown” and we were all moved into the basement of the dining commons. There was stagnant air & it was difficult to breathe. I was very frightened but just continued to keep my daughter & grand babies calm. An employee, the cashier who I’d met as I entered the building; came around looking for me! She said that she was “drawn to me” & felt the need to come and check on me. She was so kind & she brought water downstairs for everyone. The water helped a lot and my granddaughter calmed down. Once we were all together as a family; in the basement, my husband was so good with the kids. We all tried to help them to be unafraid as we waited for the “all clear” alert. After about 55 minutes, we were given that alert and we were free to eat our dinner and go back to their home. We found out that about a half block away from campus, someone was shot. There were 3 people with automatic rifles on the run. The University took great care to see that we were kept safe during this ordeal. The staff was outstanding and very courageous.

It all brought me back to the time when I was 11 years old, in 1973, February. My parents, older brother & I went out after dinner to get my brother some Confirmation shoes. I was over looking at girls shoes, when suddenly I heard my father’s voice. He told me to come over to him. But a man had a gun pointed at my dads head! I didn’t know if I should try to run out of the store to get help? Or if it was not real? I remember saying aloud,”his “Candid Camera”? If I don’t cry, I get a prize?” My dad told me “Suzanne if you ever listen to me, do as I say right this moment! Come here right now!”

So I meandered back to the store room of the shoe store; where my family was held captive; along with another family of 4, a sales clerk and a manager. I saw my mother crying as one of the two men had their guns pointed at her face. The other man had his gun pointed at my dads head. I started to cry when they told my dad to empty his pockets and they proceeded to take my mothers wedding rings.(she’d gotten that engagement ring at age 14).

My dad grabbed the mans arm & said “Don’t you take those rings”! My mom yelled at him to get down and just do whatever he was told. I was crying so hard because the man said to my dad ,”shut up or I’ll put a bullet through your head”! I was really scared and my 13 year old brother stared emotionless as he was gathering every detail.

My mom passed out and the men grabbed my arm as if to take me with them. My mother laid on top of me as I was vomiting by this time! They kept telling my parents to “shut her up – or they would!” Finally, they ripped the phones off of the wall and made us lay down face to the ground. They said that we should wait 20 minutes before getting up. The manager somehow called the police. After they arrived, we told them as many details as we could remember. My brother stayed calm and gave them lots of Information.

After that, my mother was so scared & she didn’t want to go home right away. My Uncle, her brother, lived nearby. We went to his families home so my mom could calm down and feel better. Finally, we went home but I’ve never forgotten that day in my life. I had nightmares for a very long time and never was given a chance to discuss my feelings or fears. Lastly, I was blamed for the robbers taking my mothers wedding rings. My mother told everyone that as she was covering my mouth (because I was afraid, crying & even vomited as they robbers were saying “shut her up, or we will!!”), the robbers saw her rings sparkling and so they stole her precious wedding rings. Even though the robbers took all of the people’s wallets & jewelry etc., somehow it was my fault that those rings were taken off of her finger.

I guess I just wanted to share this with you all because the ordeal in Texas brought back some of those memories. After the robbery when I was only 11 years old, there were many more traumatic events that I experienced. If you know me or if you’ve had the chance to read the early posts &/or password protected posts in this blog; you’d realize how true this is. I was later diagnosed with PTSD, in or around my late 30’s. I finally received the help that was much needed. The Domestic Violence shelter and therapy has helped me over the years, to get past some of my fears. I still suffer today, but not nearly as much as I had in the past. Thank you for letting me share my experiences here with you today.

Suzanne, age 11 years

Pondering Pain Awareness Month 2019


Hello All,

I just wanted to let you know that after a year of contemplating what I wanted to say, I wrote my thoughts about what happened between U.S. Pain Foundation & me last year in September 2018.

During my time as a very active Health/Pain Advocate, I achieved a few proud moments that I would really like to share with all of you:

1: I was awarded a “Special Tribute” from the Governor of the state of Michigan (Governor Rick Snyder) in 2016

2: I was the runner up finalist for 2013 WEGO Health “Unsung Hero” Award

3: I have over 42 published articles with the National Pain Report.

4: I was awarded the “US Pain Ambassador of the year award 2016”

5: I was certified as an in-person support group leader & ran a support group in my city for chronic pain & RSD/CRPS

6: I was accredited in a pediatric course for RSD/CRPS via AMEDCO & RSDSA

7: I was appointed to the Board of Directors for the U.S. Pain Foundation

8: I was honored in my hometown, with a Newspaper article

I didn’t do any of what I did, in order to get something in return. But these were amazing rewards after so much time went into my multiple US Pain Foundation projects, my writing, videos, Support Groups, getting proclamations & doing many many Awareness Events for USPF, RSDHope & RSDSA.

The Link to my 1 minute You Tube Video (1 minute long)

I’ve been contemplating writing my side of the story; after severing my ties with the US Pain Foundation in September 2018. I have my story written and published. If you’d like to read it, just go back one blog post before this one.

Below are a few photos that remind me to keep going when I sometimes feel like giving up. I am strong and so are you! We can do this together!

The Story of My Experiences With USPF


Here’s the link to Pat Anson’s Pain News Network article week of 5-12-19:Misappropriation of funds by the US Pain Foundation

I’ve had some things weighing on my mind lately. I had thought about keeping them to myself because I’m not a person who likes to be in the midst of turmoil. I try to live as drama-free as I possibly can. But a few months ago, I was contacted by Pat Anson, from the “Pain News Network”. I declined to speak about the events hovering around the US Pain Foundation & decided to take the high road and not allow my feelings and emotions take flight. It’s been an entire year & I let “the dust settle”. I waited an entire year to post my story about this. I didn’t want this post to be written with anger or any feelings of revenge. But there are a few issues that have been tugging at my heart and bothering my mind. These continue to nag me in my thoughts.

Since Pat Anson’s articles have surfaced; I’ve read several pieces of information that are now public knowledge. I’ve decided that there are some things I’d like to share because I do have a story to tell. I will only share with you my personal observations, opinions and experiences.

First, I must share that when I was added to the Board of Directors of the US Pain Foundation,(officially on January 31, 2018), I was excited. Around that time, I decided to call one of the persons whose photo I’d seen on the USPF website listed as a Board Member. She was also director of their Medical Cannabis program. I’d been told she was a veteran Board member. I called to ask her a few questions, such as: “What was it like, being on the Board? What do we do as Board Members etc?” She laughed & told me that “there was no real Board of Directors”. She added that they’d never even had a board meeting! I was a bit disappointed at hearing this news. But it was soon confirmed. The Board of Directors of the USPain Foundation, were actually just photographs on the USPF website, prior to January, 2018. There was no true Board of Directors. There had been no board meetings or elections. So….I’m guessing there was there no secretary or treasurer? I’m guessing this means that nobody had to get permission to write checks? Didn’t they have to answer to anyone about how or where to spend donation monies? How does the President, Vice President & Executive Director & other upper management, not know what & where money is coming in and/or going out?

(*I’d  been a “volunteer ambassador”since November 2015. I did Awareness events and fundraisers. All the while I thought I was doing something good. I wanted to be a good advocate and help people living with pain, like myself.)

In looking back, in my opinion, It seems to me that when upper management realized that things had somehow gotten out of hand and that the USPF might be slipping away, they decided to get lawyers and accountants involved in an attempt to “fix” a situation that they’d created. It seemed to have finally become something larger that they could no longer handle alone. Again, this is just me looking back, trying to make sense of the entire debacle.

I had no idea what I was getting myself into. The first meeting was in California, in January 2018. But I was too ill to travel that far and watched it as a Zoom meeting. Nothing of super importance was discussed, from my recollection. After being recruited to the Board, I still had no knowledge of any significance until much later in the year. Also, in January of 2018, they wouldn’t allow me to make it public, that I’d been appointed to their Board of Directors. My volunteer position as Board Member was not added to their website until March that year. Over the following months, I found out what a mess things were and I immediately wanted to resign. I was advised by one of the attorneys, that “it wouldn’t look good” for USPF, if anyone on the Board resigned during that time. (*Even though Dr Abaci immediately resigned from the board when he found out about the misuse of funds in the past).

I was told that we should all stay and help to reorganize & rebuild USPF. The attorneys explained that it wouldn’t really look good for any of the Board Members to resign in the midst of this reorganization. Therefore I stayed for as long as I felt that I was doing something good. Even prior to becoming a Board member, I was given “busy work” & then asked to do research & write two articles for the “Learn About Your Pain” portion of their website. I was asked to research, write and include links with graphics about S.I.B.O and Dysautonomia. I turned in several pages of completed research. Almost a year later, I inquired about when everything that I had done was going to be posted to the “Learn About Your Pain” website? I received angry emails from several members telling me that with everything that USPF was going through, how could I even think about myself? (In Spring of 2018, I was also asked to make a video about RSD/CRPS, that I in fact made and it also was never used). I was asked (3) three times, to be a part of the USPF “INvisible Project”. A 4th time, I was told that I could tell my husband that he was going to be a part of the “Caregiver” edition of the INvisible project. Each time I was invited to be a part of that, I signed video/photo releases and I answered 10-12 questions in complete sentences. I gathered photos etc., and turned them into the USPF’s person in charge of that project with the interim CEO. Each time,within days of handing back my completed tasks (*just remember that I am also a chronic pain patient and was an unpaid volunteer), I received an email from the person helping the interim CEO with that project. She just told me things like “Ooops, My Bad?? I guess the interim CEO has something bigger in store for you later”! This went on for over a year.

In getting back to the true issues at hand, in Or around early Spring 2018, we asked the former CEO to resign. The Board meetings were only and always about the situation that USPF found themselves in, regarding the former CEO. Then in July, 2018; my Pain Management doctor told me that he was going to immediately remove me from my long acting/extended release pain medications (after almost 14 years of doing well on them). He said it was because of the CDC Guidelines.

I left the appointment that day in tears. I feared for my life and what the future was going to feel like. I arrived at home to an email from the US Pain Foundation. It was a survey asking people to tell what they know about Bupenorphrine. Being a board meeting member, I immediately called the interim CEO. I shared with her my shock & dismay about this email that went out to the pain community; the very people who I try to advocate for and protect. I asked her, what prompted this survey? I found out that the foundation had received a donation from the company that makes Suboxone/Bupenorphrine ( Here’s a list of the medications that RBI makes). My exact words to her were “How could you allow USPF get in bed with Andrew Kolodny?” She tried to assure me that Suboxone wasn’t anything like Bupenorphrine (*see photos that are included with this article). I was told I didn’t know what I was talking about and I was mistaken. She went on to explain that one condition of the donation was to get the public to have more knowledge, or to see what the pain community actually knew about Bupenorphrine. Next, I asked the interim CEO if she knew that the drug Bupenorphrine was not FDA approved for pain (at that time), in the USA? I told her it was an addiction medication and that people are labeled an addict once they’re put on Suboxone/Bupenorphrine; even if it’s for chronic pain! She told me that members of the pain community should have access to all different kinds of medications and therapies. I was very upset and I decided to do more research.Bupenorphrine is a weak analgesic that may slightly help those who have chronic pain AND addiction

Along with many among the chronic pain community, I had already been personally feeling that USPF has not been supportive of opioids, for chronic pain. I have written two articles about these medications: About Suboxone/Buprenorphine-and-naloxone and More About Bupenorphrine/Suboxone. I wrote these articles because I felt that the pleas of the chronically ill, the disabled and those of us living with daily ongoing high pain illnesses/issues; were not being listened to. We were not being heard by our Drs, the government or our own US Pain Foundation.

As soon as that conversation with the interim CEO ended; I knew that my time volunteering with USPF was coming to an end. I had been already feeling that they “push” complimentary therapies and medical cannabis without any support for a portion of the pain community who relies on opioids for pain control. They portray complimentary therapies as though they can actually end chronic pain without any help from medications. They publicly & actively support their medical marijuana program. If they can support a Federally illegal substance; (which I’m personally not against when & where it is legal; and only for medicinal purposes), and if they support all methods to alleviate pain, then where’s their opioid program? I feel that people should be able to use Marijuana, Kratom, acupuncture or opioids to alleviate their daily chronic pain. But opioids have been taboo within the USPF. Possibly for some political reason, in my opinion.

Another occurrence that helped me decide to resign after only 8 months of being on the Board of Directors, was when I found out about the movie/documentary that the interim CEO was making with Actress, Karen Duffy. It just feels to me, like she & other upper management persons within the US Pain Foundation are more interested in publishing books and being in movies, than actually helping the pain community. My sadness grew deeper when I watched the movie trailer: Balancing The Pain Scale, a documentary with actress Karen Duffy & interim CEO of USPF . Some of words taken directly from the trailer are “getting beyond the pill bottle”. Once again, USPF was demonizing opioids. I’m not the only one who saw this either. Here is an article that I found from A prominent advocate for the pain community : A Blog Post from Steve Ariens, “Pharmacist Steve”.

The very last straw for me was when the Interim CEO & the rest of the Board, contemplated not telling the USPF “In-person” support group leaders that they were no longer covered by insurance. I was the only Board member who said that I’d have no part of that! If you’d like to read my resignation letter (redacted items are the attorneys names and anything that was not my information to share), it is here: Why I Resigned From The US Pain Foundation

I still find it difficult to believe that nobody else who’d been in upper management of the foundation for several years, knew anything regarding the going out and coming in of money/funds?

After my resignation, I started hearing stories from ex-Ambassadors that involved a couple of upper management persons being involved in some behavior that in my opinion, was inappropriate. Some of this allegedly took place during a few USPF sponsored events. In 2016, July; at the University of New England, “Pain Summit”, my husband and I stayed overnight at a nearby hotel instead of staying at the dorms. It appears that we missed seeing anything first-hand; but according to at least 2 eyewitnesses (one that actually called & showed me some videos), there were high ranking members involved in behaviors that I would consider inappropriate for anyone, let alone, upper management of a non-profit. Especially not during an event sponsored and run by that same Non-Profit.

All of this has been on my mind. I didn’t want to lose my integrity by talking to someone else about all of this. I decided that this is my blog & my own story to tell. I’ve given you my observations, opinions & truth to the best of my knowledge.

Reckett Benkaiser being Sued by 35 states

Who Makes Bupenorphrine?

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**BELOW IS A 1 MINUTE VIDEO SHARING MY CREDENTIALS. THIS VIDEO SHARES ALSO THE VIEWS OF US PAIN ABOUT ME & MY VOLUNTEER WORK WITH THEIR ORGANIZATION FOR ALMOST 4 YEARS:

A YouTube Video with my Credentials

The True Motivation Behind the Opioid Crisis-Profit off PDMPs and Profiling, Private Data Theft


Hello Luvs!

I just wanted to bring your attention to this insightful article. If one stops to persue the state laws on the books regarding PDMPs (prescription drug monitoring programs), there is an abundance of fascinating language buried in our very own state statutes. These…
— Read on medium.com/@heatherzamm/the-true-motivation-behind-the-opioid-crisis-profit-off-pdmps-and-profiling-private-data-theft-4b0ffb10e9d3