Opioids, Cannabis And Complimentary Therapies


When our Attorney general, Jeff Sessions told the pain community to take an Aspirin and tough it out; I hope he didn’t mean those living with cancer pain, A.S., CRPS, E.D.S. and many of the high pain chronic illnesses? I’m guessing that he must have meant that more for someone who strained their back by lifting a TV or a dresser that was too heavy? Maybe not? But that’s my guess. Along those same lines are “Complimentary Therapies”. In my personal opinion, if Acupuncture works for your kind of pain, that is great. If something called “grounding”, where walking barefoot and reconnecting with the earths energy can help your pain, thats wonderful too! Whatever works to diminish your pain, that’s what matters most. Insurance companies should be more than willing to pay for these complimentary therapies ahead of any major or minor invasive or noninvasive surgeries! There should be choices available to those who want and need them. But as much as mindfulness, guided imagery and “thinking your pain away”, are awesome ideas; I don’t think they generally help to curtail certain high levels of pain and pain illnesses.

Medical cannabis is helping many chronic pain patients with nausea, physical withdrawal symptoms and chronic pain. The Marijuana Effective Drug Studies (MEDS) Act, introduced by U.S. Senator Orrin Hatch (R-UT). He has proposed a bill, (S.1803) to encourage scientific research on cannabis as an effective and safe medical treatment. We need to advocate for this bill because Medical cannabis can be helpful to some people who live with chronic conditions. The U.S. Pain Foundation along with the American Pain Society support this Act.

We are fighting for a variety of methods to help those with high pain illnesses to deal with their pain. I’ve read that Kratom is another plant based fighter against chronic pain. These can be wonderful tools to help many persons. We need to keep fighting for many different methods to help with chronic pain, because we are all individuals and what works for one person, does not always work for another. Pain patients should be able to use whatever method of pain relief works for them because individual metabolisms vary. The therapies available to us, help many different kinds of chronic pain. Each method contains various medicinal qualities that work differently in each patient. It’s also true that one specific method of pain relief doesn’t help everyone. Nobody should be forced into taking or doing something that they don’t feel comfortable with.

The same is true with surgeries and injections. In my personal opinion, these continuous injections into the spine, are just “money makers” for the chronic pain clinics who are now too afraid to prescribe opioids. Even though the CDC told us that the 2016 guidelines

were just a “guide” and they are not the law. It seems as though the majority of pain clinics and Doctors jumped on the bandwagon to demonize opioids after the guidelines were disclosed. Now we are seeing suicides go up with the decrease in prescribing of Opioids for chronic pain illnesses. It seems as though there is a correlation between the lowering of Opioid prescribing and an increase in surgeries for Spinal cord stimulators, pain pumps and nerve ablations. But no one should EVER be forced into having an invasive surgery that could possibly cause more pain and stress for these already medically fragile human beings. My physical therapist told me that the SCS means surgically putting a catheter into your spine to give small electric shocks in order make you think of those shocks instead of the pain! She told me that our brain cannot think of pain and pleasure at the same time. I’m guessing that some think these electric shocks are pleasurable? I had a T.E.N.S. unit soon after my car accident and it did help with muscular pain and soft tissue damage, slightly. I have read that they’re (SCS) most helpful in people who have low back pain, leg pain or one area of pain and not multiple pain issues (http://aansneurosurgeon.org/features/neurosurgeons-rise-address-opioid-crisis-america/).

My previous pain clinic physician informed me that the intrathecal pain pump administers approximately 1/300th of the amount of oral medication needed to relieve high amounts of chronic pain. But this is also living with a literal “hockey puck” inside of your gut forever and and depending on one person to fill it! That same Dr., told me that I would be “married to him” as a patient, for life. In my research, I have found that if your physician leaves his practice, retires or if you have complications in another city/state or country; your pretty much out of luck, in all honesty! Emergency rooms and other physicians won’t normally touch another Dr’s patient with a pain pump! Again, this is another invasive surgery where your body is being cut and something is put into your spine. Complications stem from worsening pain to paralysis. Here is an article that speaks to some of the complications (http://www.stltoday.com/lifestyles/health-med-fit/health/to-your-good-health/implanted-back-pain-pump-is-an-option-for-very-few/article_474eed95-3f54-59ca-9b9b-9f8f941c0300.html). The nerve ablation or Radiofrequency Neurotomy, means literally “burning” nerves to “create a heat lesion”, thus, making the nerves lose functionality (https://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain). Each person feeling relief from chronic pain, is all that matters. We should be able to have choices available to discuss with our own physicians.

Someone who knows our past history of illness and our current diseases. A Dr. who can discuss these different methods with us and help us determine which route is best for each individual.

This past week I read an article in “Clinical Pain Advisor” (https://www.clinicalpainadvisor.com/treatments/epidural-steroid-injections-postmenopausal-women-bone-mineral-density-vertebral-fractures/article/739080/) that touched on the issues with the Epidural Steroid Injections. After having many of these injections in the first years following my car accident, now I find out that they cause decreased bone mineral density and increased risks for vertebral fractures. It appears that there are complications with every method of pain relief. We just need to be able to choose what is best for our own body. Nobody should be forced into surgeries, Acupuncture, Marijuana or Opioids. On the other hand, if one method, such as Opioids, have worked for you and you’ve literally tried many other methods of pain relief, then you should be able to continue. Taking a pill that has little or no side effects for a group of people who are doing well with Opioid therapy, should be still allowed and not demonized. I believe there will always be a place for Opioids for the relief of chronic pain. If you have been taking them for many years and are stable, then obviously you are not “addicted”. Don’t forget that there is a difference between addiction and dependency. Also, don’t forget to support the “Opioids and Stop Pain Act” (S.2260/H.R. 4733), introduced by Senator Schatz and Representatives Welch & MicKinley. The U.S. Pain Foundation, along with 30 other Pain organizations support this Act. It will provide $5 billion over 5 years for research of the NIH into the understanding of pain and the discovery and development of therapy for chronic pain.

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

The “O” Word


Hello Luvs,

I have just uploaded a video to my advocacy YouTube channel. I have called it “The “O” Word (The Opioid Issue)”,  It explains a lot about Chronic pain and the issue involving Opoids for the relief of chronic pain. After a pain patient has tried a good number of treatments and they have not worked out, then a patient should be able to make the choice WITH their pain management physician, to either take Opioids or not.  This would be in order to give them some semblence of a life outside of their bed or recliner.  The video is right here, below.  My YouTube Advocacy/Awareness channel is located at: http://www.youtube.com/Suzydukettes.

I don’t want to give too much away, but here is the video:

The “O” Word- The Opioid Issue

Are You Aware Of #RareDiseaseDay?


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Did you know that “Rare Disease Day” is coming soon, on February 28, 2018?  Do you  know that “rare diseases” aren’t so rare after all?  According to the the National Organization for Rare Disorders, there are 7,000 rare diseases and disorders that all together affect 30 million Americans; majority of these are children.  In other words, 1 in 10 Americans live with and suffer from rare diseases. This day is an annual celebration to recognize and bring about awareness to the public but also to decision makers.  We can each make a difference by either hosting an event, participating in online activities or doing both. Rare Disease day always lands on the very last day in February, the 28th or 29th (if Leap year). Each year we try to increase awareness and knowledge of rare disorders and bring attention to the kind of impact that they have on these people’s lives.  Most of these have no cure.  Sadly, they largely go unrecognized, under-diagnosed and misdiagnosed. Another fact is that the majority of these diseases, about 95%, have no treatments available and no cures.

The U.S. Pain Foundation supports “Rare Disease Day” and therefore we have provided several ways to include this day in your communities worldwide.  We feel that this special day “falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.”.  There are many ways that you can can become involved in this event.  One way that you can raise awareness, is by hosting an awareness event table in your city.  You may visit the U.S. Pain Foundation website at the link provided in the above quote, to read more about this day and the events surrounding it. You can also visit the www.Rarediseaseday.org  website to get more background and historical information about this day.  If you would like to participate in worldwide events you can visit:  http://rarediseaseday.us/events.

Other ways to become involved are to: “Save the date” of 2-28-18, because #NORD  will be hosting a #tweetchat (#RDD18Chat) on #RareDiseaseDay at 1:00-2:00pm EST.  You can also retweet some facts, such as this one: “There are 1 in 10 Americans that live with a #raredisease.  That is 30 Million Americans!”  You can download the special Social Media logo’s etc. and post them on your Facebook Cover picture and your profile photo.  There’s also an official YouTube video that you can share on your own Social Media accounts, at:  https://youtu.be/02zR9r-LOfQ.  You can follow them on their USA official links at: Twitter @RareDayUS, Facebook @ Rare Disease Day US and Instagram @RareDiseaseDayUS.  The Worldwide official links are here:  Facebook @Rare Disease Day and Twitter @RareDiseaseDay.  The hashtags that you want to use if you would like to spread awareness via social media are:  #RareDiseaseDay, #RareDisease, #RareDiseases, #1in10, #CuresNow and #NORD.  There is an entire list of ways to get involved right from your own home, bed or recliner; right here at https://www.rarediseaseday.us/get-involved/social-media/#1474047637908-88935dfd-3a29,

The National Organization for Rare Disorders (NORD) are the sponsors of this day and these events. But the participants in “Rare Disease Day” are the National Institutes of Health (NIH), the U.S. Pain Foundation and other patient organizations, government agencies and companies . We also encourage people to plan Advocacy events near their state capital or house to help with issues that are relevant at the state level.  The worldwide theme this year for Rare Disease Day 2018, is much needed research of various rare disorders.  When there is active research being done, it brings people who are ill, the hope they need in order to continue living and trying.

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

New Year, Old Fear


The New Year always brings hope of a new beginning and fear of the unknown. Especially in this time of unrest and uncertainty; there is a panic in the pain community. I see it around me and I feel it each new day. People are starting to come apart and pull away instead of moving together as a community to fight the thing that we all fear most.

Nobody wants to be left to die. We don’t like feeling ignored and uncared about. Drs are running away and leaving in droves. There’s no one left to listen, care or treat those with horrible & high chronic pain conditions. There are groups sprouting up from other groups. It feels as though there are many who wish to be the one to “save the pain community “. But in reality we each can be our own hero. We need to depend on ourselves to get out of this mess.

Try your best and do whatever you are able to do. I’m sure you talk with your families on the telephone? So call up your Senators office and tell him your story! You’ll probably get a staffer, but that’s OK! Write emails much? Write an email to your state reps, Senators and your Governor. You don’t need to be eloquent. They need to see faces, hear stories and come to know us as a community of real persons. Ask them if they can remember a time when they had the worst pain ever? Tell them that this is how we feel most days! Let them know that our Drs need to do the Doctoring. The government has enough to deal with; and so allow the Drs to make informed decisions. After all, they went to school for 12-15 years, some of them. They do know what they’re doing.

Turn your fear into action and if you’re just too sick; see if someone will advocate on your behalf? If nothing else, we need to realize that we are worthwhile individuals. Each of us has something to offer in this life and we are not expendable. We deserve to have love, respect and caring. We have a right to be taken care of just like anyone else does.

We must remember that there are bad people in every walk if life and in each profession. There are the good and the bad; the ying and yang with a balance someplace in the middle. There are good and bad politicians, teachers, and more. Drs, go into this career mostly because they want to heal and help others. There are bad patients too, but most of us just try to do whatever we are told and we follow protocol.

The thing that those in power are forgetting, is the balance. They are going with an all or nothing attitude. Why not realize that there are many precautions in place now with the PDMP and more? The people who want to break the law are going to find a way to do it! Those who are good, law abiding citizens living with daily chronic pain are the ones suffering. I think somehow they know we are physically weak. They think we are unable to fight for what we need and therefore they will make decisions above and for us. But we are not mentally weak. We must join together as one voice and support each other. There is no glory or fame here! There are peoples lives at stake. The right of every human being to live in some semblance of comfort.

Take Our Hand – The US Pain Foundation


Take our Hand- The US Pain Foundation

It’s the New Year of 2018 and I’m reflecting on this past year, 2017. Many people ask me about the US Pain Foundation. They ask me “what does the US Pain Foundation do? What are they doing to help with the Opioid crisis?” I thought I’d explain what they are doing and what kinds of things that I do, as an Ambassador for US Pain.

The first thing to know is that they are not about accolades nor do they have a need to be in the spotlight. They do so much for those of us who live with chronic pain. They rarely ask for anything. I have noticed that when I do fundraisers; they’re more interested in how many people were helped with “Awareness”?

But for right now, I’d really like to inform you of some of the different projects that are going on within this non profit organization. Right now there are so many people being affected by issue of chronic pain patients being under or untreated. They are also being quickly tapered off of their life saving and life giving pain medications. US Pain Foundation saw a need and heard the cries of the pain community and they responded. I also want you to know that they are not all about “rescuing” people; but rather, teaching and giving the tools so that people can help themselves. If you visit USPainfoundation.org; you’ll see a myriad of resources to help.

One of the many things they are doing for the chronic pain community is that they and 31 other patient & professional organizations/groups have submitted a letter to Congress. In December 2017, these groups sent a letter urging Congress not to repeal the Ensuring Patient Access & Effective Drug Enforcement Of 2016. If it is repealed, this would hurt protections for chronic pain patients. This law would stop the DEA from limiting controlled substance pain medication distribution in a transparent way; also lacking due process and/or safety! (see this article: https://USPainfoundation.org/news/-31-organizations-speak-repeal-Patient-access-act/ )

The entire move to repeal was ignited by the “60 Minutes”story”EX-DEA agent: Opioid Crisis-fueled by Drug Industry and Congress”, which was on TV in October 2017. The persons at US Pain who deal with many of these kinds of issues, are: Shaina Smith, the Director of state Advocacy & Alliance Development.and Cindy Steinberg, the National Director of state Advocacy.

The US Pain Foundation is being very proactive for patients during this time of unrest and uncertainty. They have devised a plan for patients.. This plan can be printed out and used by patients during an emergent situation; such as being dropped from their pain physician or if they feel desperate and/or suicidal. There’s an article and resource here: The US Pain Foundation is here to help. Here’s a plan to print out & use if you’re denied pain treatment .

Lastly, I wanted to end with this quote from this article: https://www.indystar.com/story/news/2017/11/05/when-Patients-have-give-up-their-pain-medicine-Opioids/776067001 , that I truly was inspired by, “Legitimate patients with chronic pain are being forgotten,” said Paul Gileno president and founder of the US pain foundation. “The disease of addiction is taking over the disease of pain and everyone is forgetting about the Pain Patient.” It is the truth and the US Pain Foundation is trying to give Chronic pain patients the tools needed to feel more empowered. They also have designed a new app called “Ouchie”, where you can keep a log of your pain journey. Then there is Ellen Smith who is helping with another alternative to Opioids, which is medical marijuana. Ellen is a Board Member and she does webinars and teaches people about the correct use of medical marijuana.

There is a whole Myriad of options for programs and resources found on the US Pain Foundation website. We have Awareness programs, Educational programs, Support programs and fundraising programs. So please go and have a look around at www.uspainfoundation.org . You are welcome to always ask me anything, but please know that the US Pain Foundation is there for all of us!

(These views are my own & not necessarily the views of the US Pain Foundation)