Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them:

Fighting For Chronic Pain Patients


This is the “Roy Green” syndicated radio show that is heard in Canada & the USA each week. I was contacted by Roy a few days ago and asked to come on the air and speak with him regarding the dire situation that chronic pain patients are living and dealing with these days. I also spoke of how I was informed that I’m losing my own ER/LA pain meds in 2 weeks. The starting point of my segment Is at 39:12 through 54:15. Please feel free to share this with our pain community. Thank you!

Suzanne Stewart on the Roy Green Show, Fighting For Chronic Pain Patients

We are Not Addicts! Get it Through Your Heads!


The Head of CDC says “this is personal “

Read this article and then read my comments here afterwards- please. This is outrageous!

When will they get an unbiased person to take over this “so-called” crisis? An adult, teen or child who willingly takes cocaine or heroin, laced with the bad cara-fentanyl or any fentanyl is wrong for making the choice to do so! This is 100% totally separate from a chronic intractable pain patient getting a prescription from a legitimate pain physician. It’s different because it’s not just a choice, it’s necessary & something many chronic pain patients need to even have some semblance of a life!

If this is such a “personal” matter, then keep it that way! It’s “personal” and those affected by illegal drug use should get the help THEY need; without killing all of the chronic intractable pain patients in the meantime! If we don’t die or commit suicide from living an agonizing “1/2-life” of horrible daily pain, then we are just living a tortured existence of pain combined with fear. Innocent chronic pain patients are also being made to feel like criminals! This is insane!! Please, legislators and others in positions of power over the chronic pain population of this country, take the “personal business “ out of the workplace! Put yourself in the position of knowing that any day you could be hit by a guy who runs a red light, as in my situation! Any one of you or your loved ones could be living with unbearable pain from any number of accidents or illnesses that come up each day! If it was “personal” chronic intractable pain, I’ll bet we’d be getting a different story & a different swing on things!!!

Keeping Hope Alive is Tough!


You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now. I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive. On my WEGO Health profile, my favorite words are posted. These are words that I try to live by and a phrase that originated with me, “Hope is a verb, You have to DO something in order to have it”. Now I have to practice what I have been preaching.

I think most of you know that in March 2018, I visited my pain Dr. And he did the usual random urine test. I was told in April that it showed a positive for PCP and something else, I cant even think of right now? Probably because I have no idea what these are and did not ever take them. It ended up being a “false positive” after we were charge $300.00, because HE forgot that I was taking a migraine medication that did not show up on the MAPS. He says it shows up sometimes, not others?

My PTSD symptoms have gotten worse prior to each upcoming pain Dr. visit. He has become less respectful towards me. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

The past few appointments I have not felt that respect that I had felt in the past. My Dr. was treating me differently. He got angry if I got weepy at all and he yelled at me for crying. Something changed in him and I could see it and feel it, but I was not sure what it was or why it was happening? This week I went to my appointment on Monday, 7-9-18. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me, when he used to chit chat a bit and even smile when he told me about his children. At the end of the visit, he said this to me “so we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 yrs and taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. I’ve been doing quite well and now he was taking away something that I’ve been doing very well with. Then came the “big lie”; (*which I know is untrue because I asked my Neurologist and Cardiologist and I was told it was not true whatsoever). He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me. My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8 month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, its best not to say anything”. What the heck is that all about? We are supposed to be lambs/sheep and follow orders and jump off the cliff if told to do so, without ever asking any questions? I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

Lastly, I put myself into old “abuse mode”. It was the same as the “old days” and I put myself in another place, disassociated until we could get the hell out of that room. All I wanted to do is cry and be hysterical for a few moments with the one person who loves me and who protects me to the best of his abilities and who is my soul-mate, my husband. I heard him tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

We are now at the mercy of the government in our patient rooms. He says that the state and federal government are making him do this to me. But there is no “law” that I can find in Michigan yet, stating that all persons taking Fentanyl for chronic pain must be removed from taking it now. I’m sorry that I don’t believe that you must be “heavy person” in order for the Fentanyl to work, because I was pretty much anorexic when I started it and it’s always worked for my pain. I have never had a “high” or any feelings except some relief from the pain of the several high pain illnesses that I live with and have lived with for many years. He also told me that “only those who have cancer are allowed to have these fentanyl patches now”. There is no evidence to prove that cancer pain is any worse than the pain that many of the chronic pain patients have to endure. I know there is a NORD website quote or a quote from the AMA, regarding this but I’m too sick right now to try and find it for you, I apologize. It’s easy to give advice, hope and love to people going through this, but when it is YOU who is going through it, all the love, advice and hope won’t make it better.

The same day that this happened, I awoke at 4:00 am with a feeling like someone was pressing on my left eye. When I opened my eyes, I could not see out of my left eye at all. It was totally pitch black. After a few minutes of screaming hysterically and my husband rushing to my side, I started to see patches of light in a dark mass. Then patches of the living room came into focus. After about 5-10 minutes, I could see again but not as sharp as usual with my glasses on. I went to sleep and in the morning I had a dull ache in my left eye and went to the hospital’s eye clinic that day. The Dr. Said that I had a “mini stroke” or “TIA of the eye”. My blood pressure had been high at the pain Dr. Appointment and my heart rate was 100 bpm before he even came into the room to tell me the news. He told me it was probably from stress and nothing they could do for me after all of the special testing that they did, they sent me home. I visited my heart specialist the next day and filled him in. He concurred with the eye clinic and said it could even have been an Ocular Migraine, but either/or both are from stress and can be a dangerous precursor to a stroke. I had a CVA or stroke in 2006, so I’ve been there and done that already. Today, we are like lambs going off to slaughter and nobody cares if we live or die. As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual? Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic? I guess only time will tell and all I can do is try to “keep hope alive”.

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.

Dear Senator


Hello Luvs,

Below is a copy of a letter that I’m sending to my Senator and possibly to a few other legislators. Of course, I will change it up a bit for the others.

Please give me any constructive feedback or ideas to add to the letter that I’ve written. Be kind and let me know what you think? Thank you so much! I appreciate it.

I have the letter that I got back from the Senator, in response to my first letter to her almost a year ago! So here’s my letter to her, straight out of my email draft! Thank you again.

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

Dear Senator Stabinaw,

Thank you for your response to my 1st letter. Although I think it must have been a response to someone else’s letter to you? My letter was addressing the 26 million intractable chronic pain patients who now find themselves cut off from any kind of opioid pain relief therapy. There is a place for opioids, when many other methods of pain relief have been tried and failed for one reason or another. The opioid “crisis” has truly zero to 1% to do with chronic pain patients and has much more to do with the illegal fentanyl and Cara-fentanyl brought over to the US from China etc.

I was asking you to help the chronic intractable pain patients in our state and in the USA. They are being forgotten in all of this. The government needs to stay out of the Dr. /patient relationships & exam rooms. That’s a wonderful thing to stop drug abuse and substance abuse disorder. But not at the expense, loss and inhumane treatment of the chronic intractable pain patients lives.

The chronic pain community is seeing a rise in suicides with the gross reduction in opioid prescribing. We had another fatality just this week (April 2018), I will include a link to that story with this letter. A young mother who loved her 11 year old boy and her husband, was ill before & during every pain Dr. visit (due to anxiety/fear of upcoming appointment), most recently especially.

Patients are experiencing PTSD symptoms as they await the cut off and/or tapering of their safe and effective, long term opioid pain medications. These persons are not afraid of losing the opioid pain meds. They’re afraid of living with the excruciating & horrible intractable pain on a daily basis for the resting their lives.

Please help these patients by also alleviating the fear of career loss or even jail time; for the Drs who prescribe these medications. The pain specialist goes to school for sometimes 15 years, to learn how to treat these patients. But now, legislators are taking over this “specialist” role. If you’d like to sit down with me, hear my story etc; I’d be more than happy to come. I’d love the opportunity to speak with you and anyone else who can help the chronic intractable pain patients in Michigan & the USA.

Thank you for your time. I’ve enclosed the links to a couple of stories on YouTube , the Pain News Network & the National Pain Report.

1. https://youtu.be/u4vHSLeTe-s

2. https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935

3.https://www.painnewsnetwork.org/stories/2018/4/30/death-of-pain-patient-blamed-on-dea#.Wuf0unJ0GX8.twitter=

4. https://.com/2017/12/14/pain-acceptance-the-newest-lie/

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

U.S. Pain Fdn. Ambassador/Advocate/Board Member, Recipient of Pain Ambassador of the Year Award‘16, Mentor for CRPS patients RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL

DISCLAIMER: The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We can not and do not give you medical advice. The information in this e mail should not be considered complete. Information obtained in this e mail is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this e mail. If you think you may have a medical emergency, call your doctor or 911 immediately. US Pain Foundation inc. does not represent to be an authority but is just helping pass information from other organizations, advocates and or websites.

On Jan 30, 2018, at 5:36 PM, Senator Debbie Stabenow <senator@stabenow.senate.gov> wrote:

Dear Suzanne,

Thank you for contacting me about the treatment and prevention of drug addiction. I share your support for strengthening programs that help individuals overcome addiction and lead healthy and productive lives.

That is why I cosponsored the Comprehensive Addiction Recovery Act (CARA), which was signed into law on July 22, 2016. CARA expands and strengthens substance abuse prevention, education, treatment, and monitoring programs around the country.

Substance abuse and addiction have devastating physical and mental consequences for millions of Americans. Drug abuse has increased dramatically nationwide, and in Michigan, the drug overdose death rate is above the national average. That is why I fought for passage of a demonstration project based on my bipartisan bill, the Excellence in Mental Health Act, which will expand access to mental health and substance abuse services in the community and ensure that more people can get the quality care that they need. I have also fought to strengthen substance abuse prevention and treatment through the efforts of the Substance Abuse and Mental Health Services Administration and the National Institute on Alcohol Abuse and Alcoholism.

Thank you again for contacting me. Please continue to keep me informed about issues of concern to you and your family.

Sincerely,

Debbie Stabenow

United States Senator

U.S. Senator Debbie Stabenow

The United States Senate •Washington, DC 20510

stabenow.senate.gov

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