Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.
I am very excited to inform you that I have been nominated for two WEGO Health Awards in the 2018 WEGO Health Awards season. The two areas in which I’ve been nominated are: “Best In Show Blog” (for this Blog “Tears of Truth”) and also for “Best In Show Facebook” for my many facebook groups:
- (International CRPS Support group, RASE for CRPS (research,awareness,support and education)
- Dysautonomia Support Network
- Michigan/Midwest & friends
- Chronic Pain Support Group
- Deaf/Hard of Hearing and Living with Chronic Pain
- People In Pain Unite
- ASL Song and ASLSuzyQ (these last two are ASL, or American Sign Language groups).
Also for my Facebook Pages:
- RASE for CRPS,
- RASE for Invisible Diseases,
- Dysautonomia Network,
- Association for Ethical treatment of Pain Patients (AETOPP),
- People In Pain Unite,
- Gone But Not Forgotten Friends and Family
WEGO Healt is a mission-driven company connecting healthcare with the experience, skills and insights of the patient leaders. They are the worlds largest network of patient leaders, working across virtualy all health conditions and topics. click here to learn more about their Patient Leader Network.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health to empower the patient voice. With 16 award categories, the WEGO Health awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information and support their communities but often without recognition.
I want to thank those who nominated me and thought enough of my advocacy/awareness work to think of me for these awards. It means so much to be nominated because though I don’t do what I do in order to get anything from it; I appreciate being recognized for the work that I do. It means that the work that I do voluntarily to help the several communities that I am involved with, is not going unnoticed. Thank you so much for that.
I feel that I deserve the “Best in Show Blog” award because my blog, ‘Tears of Truth”, has become a large network and a plethora of information for patients who live with various illnesses that especially cause chronic pain. There are many resources and so much information here to address patients with various needs. I feel that I also deserve the “Best in Show Facebook” because I serve several different patient communities who live with chronic pain from various illnesses. I have created 6 chronic pain support groups and 2 ASL groups that support Deaf/Hard of Hearing community (including myself, as I am HoH). I try very hard to work closely with several different non-profits and I do not ask for anything in return. These awards, even just being nominated gives me that feeling of being appreciated.
This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in Octoer, co-hosted by the Society of Participator Medicine at the Connected Health Conference. It is very important to me and I would really love to attentd this event to collaborate with industry leaders. Also, I would truly love to meet all of the people who I’ve been working with and talking with all of these years, since 2010 or so, when I first became a WEGO Patient Leader.
I’m now looking toward YOU, my incredibly supportive network to help endorse me for these two awards. There are two easy ways to endorse me, (*Wordpress does not allow me to put a badge on this blog. Therefore the link is on the column to the upper right side of this blog (on a computer)…or you can easily choose the method below)….that will only take seconds of your time, I promise! (I would love to be endorsed in both categories because they are equally important.
- Click Here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo…or click here: Suzanne’s WEGO Health Awards Nominee Endorsement Profile
If I have ever supported you, made you laugh, given you inspiration or cheered you on to keep fighting – please consider taking just a few seconds to endorse me for these awards. Thank you in advance, from my heart.
The current Opioid Hysteria was started several years ago with a rippling effect and has become worse over time. A company that has much to gain from this hysteria around opioids is called Reckitt Benckiser. According to this article in “The Daily Beast” from 10-05-16 : https://www.thedailybeast.com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts , the company was about to lose their patent and came up with a “fake opioid hysteria”. According to this article, “Reckitt Benckiser sought to exploit the nationwide hysteria over the increasing use of opioids to line its own pockets by blocking competition….”.
The drug Suboxone has a Generic name of buprenorphine and naloxone (oral/sublingual). If you visit https://www.drugs.com/suboxone.html you will notice that Bupenorphine is also considered an “opioid medication, sometimes called a narcotic”. Naloxone “blocks the effects of opioid medications”. Naloxone also blocks any pain relief or feelings of well-being, according to this article. The drug, “Suboxone is used to treat narcotic (opiate) addiction”. Suboxone is not to be used for any kind of pain relief or as a pain relieving medication. What I don’t understand are the warnings on Suboxone and these medications associated with it in generic form. The same warning is used on the label as is used for many opioids. The warnings state that if you used Suboxone, Bupenorphrine and/or Naloxone it may be “habit-forming” and can cause addiction, overdose or even death. The company Reckitt Benckiser is trying to get rid of all other opioids so that they can profit off of having a monopoly on their own medications. They claim that all chronic pain patients are suffering from “opioid use disorder” or addiction, in other items that I have read. Other warnings on the labels of these 3 drugs, state that some other medications, if taken simultaneously with Suboxone, Bupenorphrine and/or Naloxone, can cause a serious medical crisis called “Serotonin syndrome”. They state that you should be warned and inform your Dr. If you take any herbal supplements, depression medications (*or if. You have any mental illness), Parkinson’s disease, migraines, serious infections or any medication that helps stop nausea/vomiting. The label states that these medications can cause “life threatening withdrawal symptoms”. Some of the side effects are: weak/shallow breathing, confusion, weakness, blurred vision, slurred speech, liver problems, low cortisol levels (nausea, vomiting, loss of appetite etc). One of the most interesting side effects listed are “opioid withdrawal symptoms” (shivering, increased sweating, runny nose, watery eyes, muscle pain and diarrhea). Tell me again, why this medicine is “better” for chronic pain patients to take than long acting or really any opioids? How are these side effects and warnings any better? Also, as long as a chronic pain patient has been doing well on long term opioid therapy, why switch to something that could be potentially harmful or cause them death? Also, women or men who are still thinking about having or starting a family, do you know that Suboxone can cause infertility (*this article states that long term opioid use can also cause infertility?). Many other medications will affect Suboxone, such as Benzodiazephines, other narcotic medications & cough medicine. It states that Suboxone is used to treat drug/opioid addiction. It does not say that it is for chronic pain in any way, shape or form.
Don’t let anyone tell you that buprenorphine is “different from suboxone” because from my research it is just a generic form of that drug. It is an opioid but has not yet been approved for use with chronic pain. Dr’s are required to take an 8 hour class in order to prescribe these drugs to patients. They are supposed to be prescribed for addiction and/or substance use disorder. The latter is what our friend, Andrew Kolodny has labeled all chronic pain patients who use opioid therapy, as having. When I looked up the classes online, that physicians, nurse practitioners etc. are required to take in order to prescribe the drug “buprenorphine”; it states this is a medication for addiction and opioid use disorder. Physicians must apply for a waiver to prescribe bupreorpnine to their patients with opioid use disorders.
I noticed an article last week that was discussing suboxone, that it is only approved for addiction. The active ingredient in this drug is Called buprenorphine, which is known as an “opioid partial agonist”. This just means that it interacts with the same receptors in the brain, as heroin and oxycodone. The difference they explain, is that people don’t get a “high” or “cravings” for buprenorphine. But then why can’t chronic pain patients who have been doing well on opioid therapy for several or many years be left to the opioid medications that they may have been doing well on for many years? Patients who have been on a steady dose of opioids for possibly multiple chronic pain conditions, do not get cravings or high either? Why introduce these chronically ill people to something new, something else that will cause them new and or worse bad reactions/side effects? I found in this article (www.crchealth.com/addiction/heroin-addiction-treatment/heroin-detox/buprenorphine-suboxone-vs/) that suboxone contains buprenorphrine and naloxone. The naloxone keeps people from abusing the drug. It is an opiate antagonist. But why would anyone give these meds to chronic pain patients who do not use the opioids for any other reason than to have some semblance of a life with lesser pain levels? It states right in this last article above, that “If you take suboxone as directed…..the buprenorphrine will travel to the brain and you will feel relief from withdrawal symptoms. Chronic pain patients should not have to go through withdrawal symptoms. This is what I’m trying to get through to persons who are “pushing” these drugs on the chronic pain population now.
In this article called “The truth about suboxone” (www.thefix.com/content/stigma-maintenance-treatment9216), Maia Szalavitz discusses maintenance therapy for addiction with suboxone, Methadone or Naltrexone. She explains something that I’ve known to be true about opioids as well. If they are taken in irregular time and dosage then you will get a high. But if you take them in a regular reliable schedule and dosage, then “getting high is visually impossible”. Next, I read an article about different people who had been given the “bupenorphrine isn’t suboxone” speech. They were told that it would help them with withdrawals etc. But guess what? The person who told his story first, in this article, stated that withdrawals from the buprenorphrine were much worse than anything he had expected, encountered or had been told. I read his story here: (https://www.medhelp.org/posts/Addiction-Substance-Abuse/Suboxone-Good–Bad–and-Ugly-Truth—168-days-off-SUB/show/1502381) . I have been researching these drugs. In my humble opinion as a non-medical personnel, who has been through hell and back; trying different pain treatments and medications over the past 15 years; that I would not ever take suboxone, or buprenorphrine even if my life depended on it! I finally found something that worked to lessen the chronic pain due to several chronic pain illnesses; I agreed to take it after being pressured “to trust them”(doctors). But now only to have it taken away 15 years later because of some crazy opioid hysteria going on so that “he who shall not be named” can become more rich and have a monopoly on suboxone, bupenorphrine etc. by “getting rid of all opioids”.
We live in America and we should be free to have choices as to what medications we want to take, knowing the risks and benefits. Just as we have freedom of speech, freedom to bear arms and now even freedom to have gender neutral restrooms! We deserve the right to have freedom to choose with our own personal physicians who are trained in pain management etc; the right to take the best medications for our own personal situations. The government needs to step away and stop trying to politicize this opioid hysteria. Stop trying to demonize the organizations that support our freedoms of treatment options! This has turned into a deadly nightmare for many of us and now myself included.
I also want to inform you that each time I tried to look up or research “buprenorphrine” it came up as “suboxone”. Buprenorphrine is a generic form of suboxone. In addition, naloxone is the ingredient that immediately makes you go through withdrawals if you do take another opioid/narcotic while taking suboxone. Hmmm….suppose you were in a car accident, maybe like the one that started all of your chronic pain in the first place? Suppose the EMT’s or an ER Doctor gave you an opioid to help with burn trauma or gunshot trauma wounds or horrible car accident trauma? You would be really “in trouble” would you not? Anyways, just another informative message from me to you. I hope this helps someone. Sending Love and low pain your way.
This is where I got some of this information:
Articles that Explain The Bad effects of suboxone, bupenorphrine etc.
*****Several of the articles used in this blog post were provided to me by my colleague & friend, Jonelle Elgaway *** please visit her website at: CAW Nation
I read this article called “How to Ease pain without Opioids? Specialists are finding Ways” by Steve Dorfman from Palm Beach Post, a staff writer. He is writing about a clinic that opened in Florida. We all know that Florida is the very worst or one of the worst states to be living with chronic pain and residing in. Does this make any sense at all to the chronic pain patients or any sane individual? The interventions that are being outlined in this article are tortuous to say the least!
This Dr. Tapia outlines several different approaches to use instead of narcotics or opioids. Why aren’t sick people who are legitimately living with daily chronic pain, allowed to take a pill like everyone else who is really sick? It has NOT been proven that cancer pain is worse than any other form of chronic pain. The CDC rebuked Andrew Kolodny when he tried to use that line on them. It just is not true. I have two family members with cancer and they told me themselves that their pain is “not that bad” and definitely not as bad as many other chronic pain illnesses. At least with most other illnesses there is an end in sight or a treatment that helps but now the chronic pain population are being forced to do painful, torturous and just plain “stupid” things that are supposed to “trick our minds into believing that we feel better”. That is my opinion!
First of all, people who live with daily intractable pain, do not get high, do not abuse their pain medications and do not do anything they should not do with their medications. They use them for pain relief only! The chronic pain population should not be made to continually suffer and die because there are “bad” people who brought “bad” drugs like cara fentanyl over from South America and elsewhere! This is insane! If someone starts abusing insulin to lose weight and then people die, will they start taking insulin away from the Diabetics in America? Guess what? I bet you that won’t ever happen!
This Dr. In Florida has several approaches. He and other pain Dr’s who are now “afraid” to prescribe medication that can easily help their patients without giving them more pain on top of the chronic pain they are enduring; are calling this “Interventional Pain medicine”. They are doing some things like this: more injections (that sounds fun), nerve blocks (yep they hurt worse and then maybe help for a month, but guess what?? You cannot do that forever!!!), and what they like to call “minimally invasive outpatient surgeries. This is ludicrous and crazy!
There is this method they are doing where they take your red blood cells out (ouch) and they “spin them around in a special centrifuge machine that separates and concentrates platelets and growth factors, and then it is injected” …get this…this is the “good part”…”they INJECT IT INTO THE PAINFUL AREAS!” That sounds like something I want to try, with systemic CRPS….NOT… I’ve heard that this may help some forms of Arthritis! But what about all of the other horribly painful illnesses Like Arachnoiditis, CRPS, EDS and many others??? Then there is a high intensity laser therapy “believed by some to promote tissue healing”….yea…sorry…load of crap! They also have this recently cleared by the FDA device called NIP procedure (NIP stands for noninvasive pain). They use a microchip and acupuncture needles, placed “strategically behind the patients ear”. This technology transmits a flow of signals to the patient for as long as they are “wearing” the device (usually 4 or 5 days). Well, Ok but what about the rest of your life after 4 or 5 days??
I am talking about intractable pain, chronic pain and pain that will most likely never disappear. These kinds of treatments are asinine for these kinds of chronic pain patients. I’m sorry but taking a pill a couple times a day, that has absolutely no side effects and does not harm me in any way, is a much easier approach for those already living with daily struggles of constant pain that will not eventually disappear. These “pain interventionists” are just making a lot of money and taking advantage of the chronic pain population. I’m sorry but you cannot just “think this kind of pain away”. You cannot wear a couple of needles behind your ear and watch it “Poof” away! These are insane ideas from an insane culture who are being hysterical about opioids. Opioids have a place in the chronic and acute pain world. We need palliative of life care. We aren’t going to live as long as the “normal” person anyways. I am not an addict. I am NOT afraid of losing my pain meds, I’m more afraid of feeling the pain when it is not controlled!
My specialist physician told me the other day that “unfortunately, I am collateral damage to the hysteria that is taking place in our society today”. He’s 100% correct and I will probably not live through this again. I lost my physician 3 years ago. One day he was there and he was my Dr. For about 15 yrs. The next day he was gone without an explanation. I was caught going off meds for pain after 12 years “cold turkey”. I was very sick and my blood pressure went high, my blood sugar went high and it was torturous. Last Monday, I was told that my 100 fentanyl patch was being taken away. No tapering, just “one more month to help me get ready psychologically”. What the heck is that about? The safe way is to wean someone 10% every couple of weeks or so. On August 10th I will not be given the patch again. I was offered some other oral extended relief medication but I have Gastroparesis. In what lifetime doesn’t a pain Dr. Or any Dr. know that Oral opioids, especially extended ones, are not recommended for people who live with Gastroparesis (another painful condition)?? No one cares? I’ve written to my Senator, the president, my state rep and I’ve made videos and blog posts and news articles. Nobody cares about us anymore. Nobody cares about my life or my quality of life any longer? What happened to these United States of America?
(My information is from http://www.palmbeachpost.com May 21st, 2018 *Please go over there and post comments about your feelings regarding this insanity)
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):
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 !
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.