Some  Facts About The U.S. Pain Foundation


Hello Luvs,

First off, I want everyone to know that no one asked me to write this piece. I’m sorry that I’ve had a bit of “writers block” recently. Nobody at US Pain Foundation even knows I’m writing this piece. I promise you it’s not a “promotional” blog post! But when things stick in my brain and really bother me, I need to get them out on paper, in a manner of speaking.

Recently, I’ve been getting asked the same question over and over again. People know what the U.S. Pain Foundation is, but they ask me “what does the U.S. Pain Foundation do for the pain community? I’m writing this as a patient advocate, a pain ambassador and as a chronic pain patient. I’ve only been on the Board since January of 2018. But I’ve been a member of this lovely community since 2015.

The U.S. Pain Foundation is a 501(c)3 non-profit organization who is dedicated to serving those of us who live with chronic painful conditions and illnesses. They also serve our care givers. They not only help with finding resources for the pain community but they help to provide inspiration for us as well.

They are leaders among the pain community and they are pain patients. They empower, educate, connect and advocate for people living with chronic pain. To me they offered Hope. They have many programs going on simultaneously as the U.S. Pain community works daily to help people in all age groups.  They serve as advocates at the state and federal levels as they fervently work to keep track of and help us with the various Bills and laws at each level. They have people who go and testify and help with many of the situations that affect the pain community now. They even have a pediatric pain program.

Did you know that you can visit the U.S. Pain Foundation Website and find your pain condition to learn more about your illnesses? They have a program called “Learn About Your Pain”. You just go here:  https://uspainfoundation.org/programs/eductional/ .  Also on that same page you’ll find “Pain Medicine 411”, where patients can learn to make informed decisions about their medications.  They can also visit the National Coalition of Pain Providers & professionals. There they can network, educate and give referrals for pain care providers and more. Theres also information about the “Knowvember” project; which is an educational campaign done each November.  It has free webinars with experts, Twitter chats and daily facts.  Lastly, at that same page,  you will find “Take Control of Your Pain”. These are events or education days held at various locations throughout the country. These help patients and caregivers by empowering them to take control of their pain and medical journeys.

If you go to the top right of the page, you can click on “find a specialist”. All you do is put in your location and what type of physician you are looking for and some will show up for you to choose from. You can also find clinical trials or connect with people from our Pain Connection group.  They can help you locate an in-person support group in your area. These support groups are lead by trained support group leaders. You can also share your story here:  https://uspainfoundation.org/get-involved/share-my-story/ …and become a pain Ambassador here: https://uspainfoundation.org/get-involved/pain-ambassador-network/ … You can also get information about medical cannabis here:

https://uspainfoundation.org/?s=medical+cannabis

There is also the “Invisible Project”, which tries to make the invisible illnesses more visible. They put names and faces with some painful invisible illnesses. You can read more about this project here: https://uspainfoundation.org/?s=invisible+project

No one from the U.S. Pain Foundation will bother you or send you information that you do not want or without your consent. If you become a “Pain Ambassador”, you will receive a little kit with some “goodies” in it and information. There is more but then this article would get too long. If you have any other questions about what they do, please contact them directly on the website at: www.USpainfoundation.org or by telephone at: 1-800-910-2462. I hope that this answers any of your questions about what the U.S. Pain foundations does for the chronic pain community.

Becoming Incurable Crowdfunding Campaign


Please watch this short video and see how this film producer is bringing awareness of Chronic pain and Chronic illnesses to the big screen!

If you prefer to visit my advocacy YouTube Channel to watch this, you can visit: WWW.YouTube.Com/Suzydukettes….

BUT my newest Youtube video is right here for you to watch -and it’s only about 4 minutes Long: I hope you will enjoy, learn & help in any way possible with the crowdfunding campaign, at: http://www.seedandspark.com/fund/becomingincurable

Here is a very short 4 minute video: (Thank you for Watching):

Becoming Incurable Crowdfunding Video

I Cannot Do Everything, But I Can Do Something


Don’t let anyone tell you that one person cannot help to make changes within our society. When someone takes the necessary steps to help make changes happen, they are assured to be part of the outcome. Let me make this less obfuscatory and explain it in a more concise way. Back in the Summer of 2017, I had read an article from a Michigan newspaper, that explained how a husband had gone to the emergency room of a hospital, to find his wife (then girlfriend) on a gurney, writhing in pain, while a physician stood by watching monitors. The emergency room physicians had “marked her as a drug addict”, before knowing any of her history or taking the necessary steps to find out. The Dr. told her husband that his wife was “complaining” about pain. Then in his next sentence, the Dr. said that “addicts often come to the emergency room looking for opioids”. The husband was very upset by this because his wife was not normally a person who “complains” often. He knew she’s had a “nerve block” procedure that day and something must have gone wrong. She has had damaged nerves in her back since a skiing accident long ago. She had had tried over 40 medications and a number of procedures. The only thing that had helped this chronic pain patient who was lying there in horrific pain, was a “complicated treatment plan, which included opioids”. The emergency room physician finally relented and gave her just a fraction of her regular dosage, but this was at least enough to get her out of there and taken home.

This story is not unlike many others that I’ve been hearing and reading about for the past couple of years now. Some of the stories ended much worse that this one. What if this woman had no one there to advocate for her? I was upset by this story and it stirred something inside of me. Not only does it tear me up inside to hear stories of others being treated badly, but also, I am a chronic pain patient. I had already written letters to the President of the United States, the head of Health and Human Services, to my two Senators, my Governor & Lieutenant Governor. I wrote about the under treatment and loss of treatment to the chronic pain community since the CDC guidelines were revealed and then used as if they were “law” of the land. I had found out about a new Michigan HB-4601 that was going to become a law in the Summer of 2018, if I did not try to do something to change it. I decided to write a “plea for the chronic pain community” a bit closer to home. I sent a letter to the representative for my district, in the Michigan House of Representatives. Instead of the regular “form letter”, I actually received a note from him; asking me “if there was anything he could do”? He told me to contact him, “if I had any questions” and so I did. I asked if he would meet and speak with me for a few moments regarding HB-4601(*this was a House Bill that was to become law on July 1, 2018. Stated in that bill, was a 100MME ceiling limit for all chronic pain patients. Mixed into that bill, were new rules about acute pain. There was a 7 day prescription limit & persons had to physically go into the physicians office after the 7 days were up; and then go to the pharmacy to get the new script if needed. There was a bit more, but that was the gist of it).

I met with my House Representative because I just needed to do something to try and change this upcoming Bill so that it would take become the law. I don’t like to complain unless I know the I’ve done all that I could do to help others and myself, if needed in the future. If passed, this law would make a 100MME for everyone with the exceptions being: hospice care and cancer care. But the FDA already stated that “there was no scientific evidence that cancer pain was any different than other chronic pain conditions”. (*This information is found by googling: fda-2012-P-0818. Then by looking on page 9, paragraph 3 of this “e-copy” response to Dr. Andrew Kolodny, from the Department of Health & Human Services on September 10, 2013.)

I went to my meeting with confidence, kindness and some research that I had done. Human beings metabolize medications differently, as do various illnesses. I spoke to him about the HB-4601 and I told him my own story. He saw a person and could put a face to this issue afterwards. For the first time, he was introduced face to face, with chronic pain in a real person who was sitting across from him, talking and sharing.

At first, he was taken aback that someone could be on a normal dosage of Opioid pain medication and not be groggy or sleepy or “high”. He told me that he had not thought about the difference between dependency and addiction. We had a very nice conversation and then we went our separate ways.

Afterwards, I sent him Kate Nicholson’s “Ted Talk” and the information from George Knapp’s video about Opioids and the “The Other Side of Opioids” . Whenever something that might help the pleas of the chronic pain community became available; I would send it to him. My hard work finally seems to have helped. On December 28, 2017, Michigan’s Governor, Rick Snyder signed into Law, SB-027. That Senate Bill which passed, is now Public Act 251 of 17. In researching that law, I found that there is allowed a partial fill of a prescription for acute pain. It limits a first prescription to 7 days and then a physician can verbally call in to the pharmacy or fax a subsequent prescription for acute pain, if needed. This is good news for the chronic pain community of Michigan. That HB-4601 is now going dormant and nothing more will move on that, according to what I was told by the House Reps secretary. The entire Law or Public Act-251 of 17 can be found here: http://legislature.mi.gov/documents/2017-2018/publicact/pdf/2017-PA-0251.pdf

The board, unanimously passed a resolution finding that the original HB 4601 “infringes on a doctor’s ability to care for patients by substituting the Legislature’s opinion for the opinion of individual medical professionals.” The board further advocated a balanced approach “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary.”

Government can and must think about and help to resolve the opioid epidemic. Too many people are dying from the abuse of painkillers. But more and more they are realizing that the problem is not the prescription pain medications given to legitimate chronic pain patients; but they are seeing more and more Chinese Fentanyl sent through the U.S. mail service. We need to address this but at the same time we should not have to sacrifice chronic pain patients lives in order to save the drug addicted persons. We don’t have to hurt someone in order to help another. We can protect people and not swing to the extremes, one way or the other. We can be thoughtful and diligent in helping those that suffer the disease of addiction without being thoughtless to the chronic pain community; a group of people already suffering.

I accomplished most everything that I have done, from the comfort of my own home and even my recliner. The only time that I had to go out of the house for any of this, was when I met with the House Rep., in early September 2017. He met with me very close to my home because I’m unable to drive more than a couple of miles for “personal errands’. We met in a coffee shop and had a very real conversation. We must let our stories be told and our faces be seen. Our government leaders need to hear true stories and see that we are real people who are suffering and who can and will be affected by their choices. In the words of my personal hero, Helen Keller, I say this: “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something that I can do.”

I Am Invisible No More!


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Hello Luvs,

I wanted to post the video that I made for Invisible Disabilities Association. I was hoping to ask you for a favor? I have entered this video in a contest, in order to spread awareness of Invisible Illnesses. Would you please be so kind as to just click on the video below and then watch the 3 minute long Video? Then right above the video, after you click on it, you’ll see the word “VOTE”! Please click on that word and that will cast your vote for me!

Thank you so very much! If you could, I’d be so obliged if you could SHARE the video on your Facebook pages and in your groups, Tweets etc. It would be really awesome to make Invisible illnesses more known! Thank you for your vote, in advance. I appreciate it so much! Ohhhh please always us the hashtag #Iaminvisiblenomore thank you !

My video “I Am Invisible No More” Is Right Here, When You Click!

http://woobox.com/yskmzt/gallery/0by3nprZkI0

Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Becoming Incurable Magazine Feature


Hello Luvs

I’m really excited to share this with you today! The US Pain Foundation has teamed with Victoria Suan, the producer, creator & Director of her Documentary “Becoming Incurable “. I’d written to you about 6 weeks ago regarding the feature film etc. But today I want to share this online magazine that she’s made to compliment the video compilations and her Documentary!

I am the middle of 3 persons being featured in this online magazine. I’m being featured for the illness of CRPS. This is thrilling and just so very exciting to be a part of this beautiful project to spread awareness of chronic pain and illness.

Becoming Incurable magazine feature

Pain Acceptance, The Newest Lie


As I was listening to the Vox.com podcast a few days ago, I heard the voice of PROP’s president, Jane Ballentyne, surprised and complaining about how she’s been treated recently. After hearing about her belief regarding the “acceptance of pain”; several pain patients wrote negatively to her in the comments of articles and a podcast.  Some people even wrote to her employer at the University of Washington and wanted her fired, she says. I’m wondering, why she is so surprised? But obviously those who agree with her and think this is a good idea, have not lived with daily, unrelenting, horrible pain such as the kind that comes with  illnesses like:  CRPS, Ehlers Danlos Syndrome, Ankylosing Spondylosis and many others.

What I don’t understand is that in these modern liberal days of persons not having to accept anything else about themselves, why are pain patients being forced to “accept” their pain? Today in 2017, people are allowed to change their gender, nationality and  their bodies.  There’s nothing wrong with a man becoming a woman, or a Caucasian man becoming a Filipino woman; as I saw on the news the other night. In 2017, there’s nothing wrong with a woman getting liposuction on her hips, if she feels they are too big, or breast implants if she feels those are too small. If other human beings are “allowed” to do all of this, then why are chronic pain patients supposed to or urged now, to accept their torturous, horrific daily 24/7/365 state of living with chronic pain?? Now days nobody has to “just accept” anything about themselves. Something is really “fishy” here? In my own personal opinion, I feel like the United States is trying to kill off it’s weakest and most vulnerable chronic pain patients. Why do you think this might be the case? Again, my thoughts are that it is because they are concerned that the “baby boomers” are going to deplete the Medicare/Medicaid system and there won’t be anything left soon. Why not “get rid of” the sickest and most weak of Americans to save some money? I don’t know this of course, but it sure is a scary thought when everyone else is allowed to surgically change everything about their gender, race and body; but the chronic pain patients are now not allowed to have the simplest pill that can help to lower their chronic pain.  Suddenly, opioids are now being considered evil and all must be destroyed.  We must learn to “accept our pain”.  I don’t want to just accept my pain, anymore than someone who feels that they were born the wrong gender, should have to stay that way forever and just “accept” it.

So I’ve been researching other countries and speaking to other chronic pain patients around the world, thanks to the internet.  I was discussing the “opioid crisis” with my friend in Israel.  He sent me a piece of information about a University of Michigan Coursera. You can look at what I looked at here:  Teach-Out: Solving the Opioid Crisis/Coursera.  He told me that he had been seeing what’s happening in the USA and how concerned we are about the topic of Opioids.  He wanted to know if this was truth or not?   Naturally,  you must take the course to learn about what they want you to know. But just from the introduction that I read, it is packed full of disinformation. They tell the same “lies” that were exposed in Andrew Kolodny’s article “The Opioid Epidemic in 6 Charts”. Josh Bloom, a journalist and PHD, exposes how Kolodny, those that follow him, and some of the media (it seems), are changing the truth to their advantage. In his article, The Opioid Epidemic In 6 Charts Designed To Deceive You , Josh proves how in Kolodny’s orginial article, The Opioid Epidemic in 6 Charts, deceives us with false numbers.  The first sentence that Kolodny writes in his editorial states “drug overdose deaths” are about 60,000 annually. When we see that we immediately think that he’s talking about prescription pain medication overdoses. But, Josh Bloom points out that actually 30,000 people were killed.  This included all opioids including heroin.  The actual true number of deaths just from prescription pain medications or opioids used for chronic pain; was about 17,000.  Also, in Mr. Blooms article as cited above, he states that the number of 17,000 is “half the number of accidental falls”.  But 17,000 is not exactly right either, because that includes all opioid overdose deaths which were in combination with other medications.  The true death by opioid pain medications is about 5,000, according to this same article.  That is much less than Kolodny’s original “60,000 deaths”, scare tactic, from drug overdose.

Also, why are we not looking into the deaths by alcohol?  According to the NIH (National Institute of Health), the NIAAA (National Institute on Alcohol Abuse and Alcoholism) and this article Alcohol Facts and Statistics, “88,000 (62,000 men and 26,000 women) people die from alcohol-related causes annually”.  This makes alcohol the third  preventable cause of death in the United States. Do you know that the first and second causes of preventable deaths are from tobacco and poor diet/physical inactivity? So why are we not talking about the Alcohol and/or tobacco related death epidemic? Do you want to know why? I know I sure would like to know the answer. I know that my friends in other countries are telling me to come and live there. They don’t understand why this is happening over here in the USA? The friend that I was referring to earlier on, who lives in Israel; cannot believe that this is happening to the people he knows here in the USA.  He even said that he sent me the information regarding the Coursera, because he “had a feeling they were lying”. He asked me “Do you have any guess why they are doing all of these things to hurt all of you?” The only answer that I could come up with is, “Money”. The reason that I stated above, regarding Medicare/Medicaid and the baby boomers. I was embarrassed to say that to my friend, but I still did. His response was “this is horrible”. He said that “in Israel you can get as much as you need; as long as it is opioids and not medical marijuana”.  It is totally opposite of that here in the USA.  In Israel, the primary care doc can prescribe what he believes will help the diagnosis of his patients. Imagine that! Oh wait, that is how it used to be here in the USA also! But not anymore!  I asked my friend if his primary  or pain Dr. helps him more? He told me “My primary helps me, of course! She helps the most.  She is nice, caring and gave me the pain medication with out any pain doctors advice.  On her own, because she is a DOCTOR herself…..you know? AS it should be”! Also, as I feel it should be in the United States once again.