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 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)

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

Run Forest, Run!


This was written by Dr Mark Ibsen, MD, who has become a close friend of mine; as has Dr Tennant. My thoughts and blog post on this subject will be forthcoming ASAP! But for now, just for this moment, here are Dr Ibsen, MD’s words regarding this abhorrent situation with Dr Forrest Tennant:

Dr Tennant recently came to Montana to testify for Dr Christensen. Sadly, while in the home state of many of his intractable pain refugee patients,

His home was invaded and business ransacked by agents who allege he was “overprescribing”. 

Just what IS overprescribing?

And what would Underprescribing look like?

This term would imply that there is a ceiling dose of a medication that has been prescribed. 

It would also imply that there is a “Goldilocks Dose” that is not too high

Not too low, but “just right”. 

Dr Tennant,

An endocrinologist,

Has been on the forefront of research and therapy for the intractable pain that patients developed after years of medical or interventional management, or mismanagement. 

These are patients with adhesive arachnoiditis, complex regional pain syndrome, trigeminal neuralgia, failed back syndrome, traumatic brain injury, and various other accidental and iatrogenic pain syndromes. 

The law enforcement and regulatory agencies Who are threatened by the Obi-Wan Kenobi of pain medicine do not have the sophistication,

compassion,

Or training to realize that they are not dealing with El Chapo. Drug dealers don’t actually care how their clients are doing. In fact, when a drug addict dies of an overdose, sales most often go up. Dealing drugs that are unregulated and often fatal is not what doctors do. 

Most people who suffer cardiac arrest have some type of medication on board. We don’t arrest their doctor for prescribing a Statin or aspirin or blood pressure medication in an attempt to enhance or prolong a persons life. 

People have hypoglycemic reactions every day,treated for their diabetes. We do not arrest their doctor for “overprescribing insulin”.

All doctors are required by their oath to do no harm-to try to hit that “Goldilocks dose”

When cancer patients die,

Do we blame there oncologist for killing them?

There’s a reason medical doctors train for 12 to 20 years, then continue to study and research the literature their entire careers. Could it really be true that Dr. Tennant is sidelined by a DEA agent with 12 weeks of training?

Are doctors no longer protected by the regulations outlined in the Controlled Substances Act?

Dr. Tennant treats the sickest of intractable pain patients. I too have referred intractable pain patients to him, I have taken his courses and follow his protocols.

Now, who will testify for me and protect my patients?

According to the World Health Organization North America provides the best pain care management on the planet. Dr. Tennant has always recommended following the world health organization pain ladder. 

Doctors like forest Tennant, William Hurwitz MD, Ronald Myers, and Chris Christiansen are simply guilty of trying to relieve the suffering of their intractable pain patients. 

This often requires us to

“Increase the dose”

If we as a culture continue to punish pain patients and the doctors that serve them no one will be safe accessing the incredible medical system we have developed in the US. 

Yes, complications occur. 

Yes, people are dying. 

From heroin/ fentanyl injection ODs,

Not

From responsible informed and well researched treatment of those in intractable pain who have failed every other therapy available.

“Run, Forest, run!”

Help Spread Awareness of RSD/CRPS This November 2017


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    Imagine that one moment you are walking around, sipping lemonade at a Summer arts festival and the next you are admitted into a hospital after a man ran through a red light.  You awaken after a catastrophic motor vehicle accident feeling incoherent and in a lot of pain.  That was what happened to me in 2002.  I endured 3 years of brain injury rehabilitation, 8 years of Physical therapy, speech therapy and 8 surgeries. But this story is not about those days, it is about later getting diagnosed with RSD/CRPS.

     I went in for surgery on my right foot, in April of  2007.  Six weeks later I had my post-op check up. I knew something was wrong, before I arrived at my appointment.  I was in more pain and it felt as though my foot was “on fire” and had “exploded” on the inside.  I was told by the surgeon that day, that I “had a little RSD” and I was given Lyrica.  I could not take the Lyrica, as it made me very ill.  After researching “RSD” online, what I read sounded horrific!  I decided to get a second opinion. After visiting an Orthopedic foot/ankle specialist, I was told that I had “Classic RSD” and he sent me to a Pain Management clinic.  I did not go because I’d recently been through all of the “hoops” of the pain clinic, following the car accident.  I wasn’t a candidate for a pain pump or a spinal cord stimulator and so I was sent back to my primary care physician.  The pain Dr. had told me that “they are looked at under a microscope by the government”, therefore I had to have my primary Dr. do the prescribing.  I ended up getting medications to try and help with the pain.  I tried to finish up the PT but any touching of that foot was unbearable.

     I was getting by, just trying to live day to day. Then in 2013, what was supposed to be a pacemaker replacement surgery turned into a total pectoral muscle rebuild and more. I was diagnosed with “severe systemic/full-body CRPS. I am very lucky to have a Neuro-Cardiologist who’s done research on RSD/CRPS. He tried to head off the full blown systemic CRPS by taking several precautions. Unfortunately, it did not work for me.  Now I’ve explained how I got the CRPS but I’ve not told you about the depth of pain people endure when living with this Neuro- Inflammatory Autoimmune illness that is #43 on the McGill Pain scale.  The copyrighted flame CRPS awareness ribbon is a perfect example of what it feels like. Personally, it is as though the entire left side of my body, inside and out; is on fire.  It feels like a deep burning fire within and yet I feel and icy coldness as well. My knees, feet, hands and chest feel as though they might explode at any given time. This is only one of 8 or 9 high pain chronic illnesses that I live with. I think it is the illness with the worst kind of pain.

     November is the month dedicated to Awareness of RSD/CRPS, also known as “Reflex Sympathetic Dystrophy” and “Complex Regional Pain Syndrome”. Health advocates and patients join with non profits, such as RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and we spread awareness. This is a complex and somewhat rare high pain illness. It is classified as a rare disorder by NORD (National Organization of Rare Disorders) and the FDA, but about 200,000 people are diagnosed annually.  According to the RSDSA website, “CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.”  Usually it follows a surgery, a period of immobilization after a musculoskeletal trauma or some kind of injury to the nerves.  It steals the very life out of so many people who are unfortunate enough to be diagnosed with it. Early diagnosis is the key to some instances of remission. Sometimes it takes years to even get a true diagnosis, due to the fact that many physicians don’t even know anything about it.  But there are some people who can help.  RSDSA  is a 501(c)3 non profit organization based in Connecticut and was founded in 1984.  I’ve come to know and love, the Vice President/director, Jim Broatch, MSW.  Annually, during the month of November, we have quite a campaign going. RSDSA is always there to “provide support, education and hope to all affected by the pain and disability of RSD/CRPS”. They are always striving to do more research and develop better treatments.

     Some of the events that I have going for this month, include a campaign that I call “#wearthemsharethem for RSD/CRPS”. You see, when the former RSDHope.org closed their doors in June 2016; there were many treasures “gifted” to me by my “adopted” family, the Orsini’s. I was given a number of temporary tattoos with the copyrighted CRPS flame awareness ribbon on them. I have put those to good use 2 years in a row, now. I ask people to just send in a SASE (self-addressed stamped envelope). I return their envelope with several of the temporary tattoos inside.  I only ask for them to send me a photo of themselves or someone they love, wearing one of the tattoo’s, so I can post it to my Website  “RASEforCRPS” (R.A.S.E. represents: Research, Awareness, Support & Educate). I use the hashtag #wearthemsharethem and we post to Instagram, Facebook and Twitter, in order to raise awareness. Also I have gotten a proclamation from the Governor of Michigan, Rick Snyder every year since 2013. The proclamation declares that in the state of Michigan, we recognize November as the month dedicated to the Awareness and support of RSD/CRPS. Then there are 3 fundraisers that I have going on this month:  a Facebook fundraiser lasting all month, a LuLaRoe Album sale on Thursday, November 16th through Friday, November 17th for 24 hours, and a Pizzeria fundraiser and Awareness event on Thursday, November 30th from 5:00pm until 8:30pm. One more activity for Awareness and education that I did last year and am doing again this year is the “#30factsfor30days of November”.  I post a daily fact about RSD/CRPS on each social media site.  All facts are taken from the RSDSA website, with their permission of course. 

     Aside from what I am doing, which also includes writing, posting, blogging and sharing; RSDSA has many events taking place during the month of November also.  They have an “event Calendar” on the website, but just to name a few:  there is the 4th annual Central New Jersey RSD/CRPS Walk for Hope, Saturday, November 4, 2017, the 5th annual Fight the Flame 5K, in Charlotte, NC, on Sunday, November 5th, 2017, the Fight the Flame 5k, Mentor, Ohio, Sunday, November 5, 2017, CRPS Meet-up and Scavenger hunt by CRPS Forum, Los Angeles, CA Monday, November 6, 2017, Charity Ride for CRPS, New York City, Saturday, November 11, 2017, and Color the World Orange, World Wide, Monday, November 6, 2017.

   Please help us share this information and raise awareness and support for this painful illness. The RSD/CRPS community truly comes together at all times, but mostly during this special month.  We are not ones to sit in the side lines. This community comes together and creates a beautiful month of togetherness, awareness, support and raising money for the much needed research.  The monies raised, also helps RSDSA provide patient assistance.  One of the funds that helps RSDSA assist CRPS patients is the “Maria Lane Fund” and another is the Brad Jenkins memorial Fund.  You can find out about these assistance programs at the RSDSA website as well. There is also an RSDSA informational YouTube channel at https://www.youtube.com/user/RSDSAofAmerica. The other part of RSDSA’s mission, is to fund research. They have funded more than $3 million dollars in pilot studies and pain fellowships.

     Lastly, I want to personally thank Jim Broatch and RSDSA for the letter that they sent out on October 9, 2017.  I was touched and I stand along side of many other RSD/CRPS patients/advocates. This letter that was emailed to it’s members, states that they “Oppose Cigna’s decision to Not Cover the cost of OxyContin in 2018” and they wrote also “We will continue to stand with our community during the War on “People in Pain”. Thank you to all who are doing their part to spread awareness and try to educate the medical professionals and the public regarding this illness.

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