I want you to really take a look at this post, please? I want you to “meet”, Tina Petrova. She is a fellow pain Warrior and a colleague of mine. She is not only a friend; but a friend/colleague in advocacy and awareness of chronic pain and people who live with chronic pain illnesses.
Honestly, Tina Petrova is an award winning film maker, a motivational speaker & chronic pain activist. This movie is about the real deal, chronic pain and everything that goes along with it! This movie has got to catch the attention of legislators and others who do not yet understand what it’s like to live with daily, unrelenting chronic pain.
“Pain Warriors- The Movie”, WILL catch the attention of anyone watching. But especially those who need to change the way they think regarding intractable pain and invisible disabilities. We need your help to donate and /or spread this crowd funding campaign. Please help to get more people involved in supporting this awesome film. The crowdfunding campaign will go through mid-September 2018.
Here’s the link to the Seed & spark crowdfunding campaign for “Pain Warriors- The Movie”!
*Pain Warriors – The Movie
Needs Your Help! Please Help Support This Beautiful Project!
Our story brings to light a deadly suppression of facts & figures. Chronic Pain does not discriminate against age, sex, or race; suicides in all groups due to under managed pain are on the rise. We are, all of us, only one car accident or one surgery away – from a life of chronic pain.
About The Project
PAIN WARRIORS ~ sets out to examine the invisible crisis of Chronic Pain in North America, and its devastating toll on society. Without proper and timely education of the masses this growing concern can and will reach a tipping point, beyond which there is no return.
Society’s lack of public information regarding Chronic Pain, has sadly forced this disease and its sufferers underground.
Not only are many denied adequate treatment , they are often looked upon by society as a whole as outcasts. We are , all of us, only one cancer or one car accident away from a life of chronic pain. As we age the numbers of chronic pain patients will only grow exponentially.
We intend to bring to light a deadly suppression of facts and figures. Without education and awareness, there can be no reform.
Compelling interviews showcase a broad cross section of pain patients, their loved ones and the doctors that treat them across North America. We share intimate, courageous and heart breaking 1st hand stories from pain patients in the trenches- the ongoing political and social issues they face and how they struggle to cope , just to get through another day.
In recent months, several American pain specialists have been targeted by the DEA and currently face loss of license and potential incarceration, for attempting to uphold their Hipprocratic Oath and serve the U.S. pain population. The lines between “pill mills” and legitimate doctors have become blurred and in many cases, unrecognizable to the general public and society at large.
In recent decades groups including breast cancer and aids patients have banded together formally with runs marches, rallies – telling their stories in the press.
Doing so has garnered more ambitious and imaginative solutions to treatment and health care reform. The best hope for pain patients, is to become more vocal and active in their own pain management.
The needed response to pain, it would appear, is to encourage patients to stand up and speak up.
PAIN WARRIORS plans to do just that – give voice to the voiceless. #givepainavoice #painwarriors
Pain Warriors ~ the Movie has posted an update!
11 Yr. old Hunter, battles courageously with a Chronic Pain condition, using Superheroe comic book characters – to inspire him to get up and fight yet another day. Pediatric pain is one of those growing pain conditions that is under- discussed and under- represented in the media.
Our new film Pain Warriors – seeks to identify and shine a spotlight on marginalized peoples and groups that have fallen through the cracks of both appropriate and timely healthcare and , societal compassion as a whole. In the pain community, we use the term” a slow death of compassion…” to denote societies overall shunning of chronic pain as a legitimate disease that steals lives, breaks hearts and destroys the very fabric of family life. There has been a deadly suppression of facts and figures for far too long. Pain Warriors the movie ~ dives fearlessly into the muddy trenches, where chronic pain patients & pain doctors who face a hostile regulatory environment live in apprehension, fear and suffering- of what is to come next… live in fear and suffering.
I want to inform the pain community about my situation because this is happening to many chronic pain patients. I’ve been a voice in the pain community and now I too, am going “down the rabbit hole”! Before I become possibly incapacitated; I want you to know what is happening. For those like Kolodny, who believe that we should “get beyond the pill bottle”; I say, unless or until you are in my shoes and live with my experiences, stop preaching silly things like “pain acceptance”, will help. It cannot help all of my pain conditions combined. Stop acting like you are better, mightier or stronger because you might feel better from “grounding” (which is in essence, touching the earth with your feet, being “one with the ground/nature”, to make your pain lessen or disappear). The bottom of my feet are covered with open sores due to the stage of CRPS that I live with. This has become insane, while there are individual cases in where opioids are the preferred treatment and they do continue to reduce our pain.
*A bit of history if you want it: I won’t start at the very beginning because that would be much too long. I will tell you that I’ve been on SSDI since 1999 and initially for PTSD (*they said that I was the “worst case of childhood trauma/abuse they’d seen in 36 years) and kidney failure. Then I was hit by a car that ran through a red light. One minute my husband & I were sipping lemonade at an art fair. The next minute, (as we travelled through a green light to have dinner afterwards) he was really bruised & shaken and I was unconscious & strapped to a back board, on route to the hospital. That experience is a story for another day. The entire auto insurance bullying and fear mongering was another traumatic debacle. These experiences have continued, one after another; which brings me to today and this article.
After our accident in 2002 and upon being discharged from the hospital; I was sent to doctor after doctor. I was also sent to TBI rehabilitation, PT/OT and also to Tri-County pain clinic in MI. I was totally new at all of this & it was my first experience with this type of physical pain. Although, I have had 2 C-sections and I’ve lived through childhood, ex-spousal & other abuse throughout my entire life. At the pain clinic, I received various epidural nerve blocks, trigger point, cortisone and other injections. I also saw a Pain Psychologist, did Biofeedback and did many other types of therapies. The Pain Psychologist wrote in his report, by the way, that I “do not fit the profile for an addictive personality.” He attached me to an EMG type of machine where he can “see” your pain spiking via a red line going upward. Mine went off the charts. This was prior to my diagnosis’ of: systemic CRPS, EDS-4/vascular (aka Polyneuropathy in Collagen Vascular Disease), R.A., Dysatuonomia/POTs, Gastroparesis, S.I.B.O., Chiari and more. At that time though, I was diagnosed after the auto accident with: many physical injuries and a TBI. I went through 8 surgeries, 2 screws in my left shoulder, metal in my jaw, 2 AFO’s, prisms in my glasses, 2 hearing aids, a dual chamber pacemaker and a hospital bed in my home. I have a walker, loft-strand crutches, wheelchair, motorized scooter, leg braces and also knee, neck, hand and shoulder type of braces.
After going through all of the “hoops” at the pain clinic, I was found not to be a candidate for an SCS (spinal cord stimulator) nor a pain pump (intrathecal). I was diagnosed with CVID or “Combined Immune Deficiency” disease. They informed me that I would be sent back to my primary dr. because they could not give me the medication that I needed. In 2005, they were already saying that they could not prescribe pain medications (which they felt I needed) because they had to “stay under the radar of the DEA”. I went back to my PCP and for the next 10 years he prescribed pain medications. Until one day in December of 2014, I arrived at my PCP’s office and was told that it was his last day working there. I received no other information and I was terrified because I did not know where to go or what to do. Dr. Bullach MD; promised me that he would personally make a call to my former pain clinic and Dr. Dobritt, my former pain physician. He also promised me that my treatment would remain the same under his partner. I returned the next month to see his partner and was condescended to, teased, put down, and told that “all of the other dr’s patients were “drug addicts”, “drug seekers” and unworthy people seeking pain medications. He promised to see me for a couple of months because he had known me “to be a good person” since my children were small. But over the next 6 months I had to put up with derogatory remarks.
Dr Bullach never did call Dr Dobritt, nor did he send any of my updated records. I found that out when I went to see him myself again. I had been a model patient; and the way I was treated when I went back to see him was horrible. He would not take me back as his patient! He told me that’ “he couldn’t see me because I was part of “Dr Bullach’s mess”! I had no idea what he was talking about!
I sought out a pain physician and found one near my home. He told me that if I could take myself off of the medication that had been prescribed to me since 2005, that he would “accept me as his patient”. I was very ill for about 11 days and for up to 6 months, I was not feeling well aside from the pain issues. But I got through it and would not ever want my worst enemy to go through that experience. I did it with my loving husband by my side because I was not addicted to it. My mind did not care at all, but my body was dependent. When that ordeal was over, I saw my current pain dr; the one I still see today. Things had been going well and I have had some semblance of a life. He had told me that I was a “complicated patient” and that I did not have to worry about my medication being stopped.
For several days prior to these appointments, I became very apprehensive, nervous and had many of the PTSD symptoms recurring monthly. Then his attitude towards me changed from a mutual respect to him being the “Wizard with a magic wand” and Me being a peasant “needing his magic”. Thats the only metaphor I can come up with. It was bazaar. I had a routine urine drug screen test in April 2018 and he knew before I left his office that something was not “right” with it, but he failed to inform me prior to leaving. At my next appointment he informed me that I had had a positive urine test and so he sent it into a lab for more testing. It came back as a “false positive” because of the migraine medication that HE KNEW WAS PRESCRIBED to me for many years. I take very little, but he knew it was in my records; he knows that I take it. In the end, we got stuck with a $265.00 bill for testing that I did not agree to pay for. We got stuck with this large bill for something that I did not do and would never have done. It was his mistake, not mine that he forgot the medications that I am taking and that it can show up as something else, as he explained later.
He has had an “edge” to his treatment of me since that date. I am literally ill prior to each monthly appointment. Nothing changes in 30 days anyways? Why in the world do we need to go so often? This is ridiculous. Just as a person with diplopia or myopia needs glasses; just as a diabetic needs insulin and a depressed person needs anti-depressants; I am a chronic intractable pain patient and I need pain medications. I’ve never done anything wrong as far as I always pick up my meds on time, I’m never late for my appointments and I’ve never been a “no-show”. But I showed up on July 9th, 2018; and was suddenly without explanation, cut down to 75% of my LA/ER pain medication. He was going to stop it abruptly that day, but I did not get hysterical. I reasoned with him, adult to adult. I reminded him of my prior heart attack, the CVA (stroke) and my complicated medical history with multiple co-morbidities. He agreed reluctantly to taper me a bit. He informed me that he was doing this to get me “psychologically ready” and that next month I would get zero. I’m not “Psychologically addicted” so that made no sense at all, but I went with it for my own comfort and safety. He went on to tell me that suddenly the patch is now “only for cancer patients”, which he does not treat. He also told me that I was “not heavy enough” for the patch and “I was probably only really getting 30% of the medication”. I did not say a word as I was prescribed down from 100 mcg per hour, every 48 hours (due to hyper metabolizing), to 75 mcg every 72 hours. So not only 25% less medication, but now being stretched out a full 24 hours longer each patch. The first few days were difficult as I had a few withdrawal symptoms. But the rest of the month, I’ve had increased pain, exacerbation of my CRPS, and fatigue. Also, every 3rd day I was in bed, very ill. We all know that for especially those of us who hyper-metabolize (due to the types of pain illnesses that we have), the patch never works on the 3rd day!
I have a loving, supportive husband and my support “team” online which consists of a few people who have been there for me throughout this ordeal. I had websites, stories and ideas sent, all in an effort to help me reason with my pain dr. On 8-10-18, I showed up well prepared. I had with me, the 2013 FDA’s response to Andrew Kolodny, when he wanted Fentanyl labelling changed for non-cancer pain. They told him this, in their 2013 letter (Docket No. FDA-2012-P-0818): “It is FDA’s view that a patient without cancer, like a patient with cancer, may suffer from chronic pain, and PROP has not provided scientific support for why labeling should recommend different treatment for such patients. In addition, FDA knows of no physiological or pharmacological basis upon which to differentiate the treatment of chronic pain in a cancer setting or patient from the treatment of chronic pain in the absence of cancer, and comments to the Petition docket reflect similar concerns. FDA therefore declines to make a distinction between cancer and non-cancer chronic pain in opioid labeling”. My dr responded that “this was not about Fentanyl” and that I am educated and should be able to find out about this?
Next, I brought to his attention, a letter that I received a copy of, from a good friend of mine on LinkedIn. He had written to the CDC and asked about the horrific state of affairs within the chronic pain community. We covered his name and I showed this to my dr as well. This letter, which is directly from the CDC and dated 4-8-18, states these things:
- chronic pain patients deserve safe and effective pain management
- physicians should continue to use their clinical judgment and base their treatment on what they know about their patients. That includes the use of opioids if they are determined to be the best course of treatment. The Guideline does not support involuntary tapering.
- Obtaining patient buy-in before tapering is critical to successful dose reduction.
- The Guideline is not a rule, regulation , or law.
- The Guideline is not intended to deny access to opioid pain medication as an option for. pain management.
- The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain.
- The Guidelines are not intended to take away physician discretion and decision-making.
- Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy.
In the end, none of the information that I presented, made any difference to my pain dr.. He just kept repeating “the guidelines, the guidelines, the guidelines”. He told me that in all reality, I was not worth saving, because if I look at his waiting room, he has all of those other people to serve, who also live with pain. If he helps me, he risks losing his practice and then he would not be able to help all of them. He informed me that “everyone is looking at him the same way” and they are also “pleading with him” for their medications. I told him that he’s told me that I am “different” and that I am a “very complicated case with multiple co-morbidities”. I told him that I researched Michigan Law and that there are no changes in the care or plans for chronic pain, only acute pain. None of this mattered because he just looked at me, after I showed him the letter from my G.I. dr.. A letter written by him on my behalf, states that “Suzanne has been stable while she received the fentanyl patch”. It goes on to say that I have “RSD and severe Gastroparesis and this could “exacerbate the illness of a patient who was difficult to stabilize” due to Q-T prolongation, her allergies and intolerance for oral medications”. He said that “he strongly recommends that my pain management not be altered unless there is a strong medical reason.”
My pain dr looked at me and said “This is bullshit! His license is not any better than mine! If he wants you to have the fentanyl patch then let him prescribe it for you. You’re also welcome to find another dr and get a 2nd opinion. I won’t be upset if you do that, although Im not kicking you out or anything.” He repeated that “the CDC guidelines are specific for fentanyl” and there was no way in hell I was ever getting that from him ever again, an neither is anyone else; no matter what! He pretty much told me if there was an exception, I would be it, but there are no exceptions. He repeated to me that I am educated, and have access to the internet. If I do my research, I will know that what he’s saying is true. I have done a ton of research and I know that what he’s saying is not true. He is violating his Hippocratic oath “to do no harm”. Many other physicians are also doing this instead of defending the fragile people who need them during this opioid hysteria
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,
**Below is a photo screenshot that I took Of the reply that I received back from them:
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
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!!!
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”.