Regarding Buprenorphrine-Suboxone


Hello my friends! For this blog post you should probably grab yourself a cup of coffee and sit down to read this short story! I’m sorry that this article is more like a “short story” than a blog post! It’s twice as long as any of my normal posts would be. But this just meshed and I wanted this information available to you.

In my opinion, I would prefer no treatment than be forced to take some of these harmful/ horrific medications. By the way, I researched them and they are still not FDA approved for chronic pain patients.  In September 2018, a form of Bupenorphrine, a sublingual film, was FDA approved “for opioid use disorder. ” It was also approved for the maintenance of “opioid dependence”. But if your physician prescribes it for your chronic pain, “off label”; and you are not a patient with “Opioid use disorder” or an “Opioid abuser” then  you may possibly get a very low analgesic effect. Might as well take that Tylenol they’ve been pushing at us? It will help just about as much.  Well, you all know what I mean, right?

Here’s another thought:  Opioids, (*which are being demonized by our government now) can have a few side effects but normally they go away within a week or so after taking them. The side effects can be:

  1. Constipation
  2. Shallow breathing (but that is only if you take more than what is needed for your height/weight and medical conditions)
  3. Once in awhile you can get nausea and/or vomiting (but the nausea lasts a couple of days at the most.  I’ve not experienced vomiting from Opioids.

Here are the list of side effects for the FDA approved Bupenorphrine and Naloxone sublingual film (called Cassipa): Proof of these Side effects of this medication online

  1. oral hypoeshesia (numbness),
  2. glossodynia (burning mouth)
  3. oral mucosal erythema (inflammation of the oral mucous membrane *sores in your mouth*
  4. headache,
  5. nausea
  6. vomiting,
  7. hyperhidrosis (excessisve sweating)
  8. constipation,
  9. **SIGNS AND SYMPTOMS OF WITHDRAWAL**
  10. Insomnia
  11. **PAIN**
  12. Peripheral edema (accumualtion of fluid causing swelling in the lower limbs

**THESE PRODUCTS MAY ONLY BE PRESCRIBED BY DRUG ADDICION TREATMENT ACT (DATA)-CERTIFIED PRESCRIBERS. With this list of side effects and all of the warnings, how or why is is supposed to be OK to use, but other

***BELBUCA:  is another type of “opioid”, similar to the above, but without the Naloxone. It is also a partial antagonist. (**It is very different from the kind Opioids that most pain patients are familiar with. The opioids that we know are able to help alleviate high amounts of daily, round the clock, high impact chronic pain).

I visited the Belbuca online and their website has a bunch of videos showing people with chronic pain and how this medcation has supposedly helped them (they are paid actors most likely).  The list of effects appear to be much longer and worse, in my opinion. The list of bad effects on the majority of opioids that many chronic pain patients have safely taken for years; or even decades, appears to be much less toxic and life altering or even, threatening.  On that same page, they say that “Methadone maintenance is  helpful for people who don’t do well with buprenorphrine. But people (mainly addicts) have to visit a clinic daily to recive that treatment.”  Our favorite guy (*cough cough), Kolodny, says now that “Suboxone is a viable treatment akin to buprenorphrine.” *Also, did you know that once you take Bupenorphrine or Suboxone, you will be labeled an “addict” & no longer a chronic pain patient/warrior! See: Opioid Addiction Treatments). Kolodny ‘s trying to not only rid the USA, but the world possibly, of opioids and replace them with much more harsh opioids! Suboxone which he calls “akin to buprenophrine” has been proven to have none or a very low analgesic effect. If taken, this so called medicine, LABELS you for life as an “ADDICT”. Yes, you are labeled for life as an addict if you accept Kolodny’s “get rich scheme” & take these harsh addiction medications! They are very different from normal pain medications that most people with long term chronic pain illnesses have been doing well on, for decades! Suboxone & Bupenorphrine also have a long list of worse than horrible side effects. Why & how are these OK to give to sick people living with horrific amounts of daily pain? People who are seeking any kind of reprieve, relief from their painful existence in hell.

Please be aware of this crooked switch to these harsh addiction medications. Please understand that the cowardly physicians, who prescribe these meds, do not have the patients best interest at heart. Instead they’re lining Kolodny’s and others wallets and bank accounts.

All the while we are suffering and being lumped together with addicts (yes, they need help too. But that is their story to tell). I have testimonials a mile long from several persons who had been prescribed these harsh addiction medications & who’ve taken one form or another of Bupenorphrine or Suboxone. They said “it was the worst medication they’d ever taken and it has horrific side effects that are unrelenting & never ending. IF you dare try to go off of it, or taper down (*as you can do with the regular kinds of opioids that most patients are familiar with), those medications tend to pull you in even deeper. They’re designed to keep you addicted . They work against your body and majorly increases your pain so that you won’t stop taking it. You cannot ever go off of it “cold turkey”. If you try, then you may experience withdrawals that I’ve been told are hellish. Worse than anything I’ve ever heard about regarding opioid withdrawals.

In a future blog post, I will try to add more & organize them. I’ll let you read what others have sent to me. I have permission from several persons because they want you to know what they have had to endure; in order to save you from going through the same hellish experiences.

DISCLAIMER: *I AM STATING THAT THIS MEDICATION IS NOT GOOD FOR HELPING THE CHRONIC PAIN PATIENTS! BUT IT MAY BE A “WEAK ANALGESIC” THAT COULD HELP AN ADDICT, A DRUG ADDICT, WHO LIVES ALSO WITH CHRONIC PAIN! That’s what it’s good for!!

Frontal lobotomy for the relief of intractable pain • CERGM


Hello Luvs,

Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same

Who are the bad actors? Government, Healthcare or Patients? • CERGM
— Read on cergm.carter-brothers.com/2019/03/28/frontal-lobotomy-for-the-relief-of-intractable-pain/

9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/

Anti-Opioid Zealots


I opened up facebook to see that a person who calls herself an “investigative reporter”; doesn’t actually have a clue about the subject for which she stands upon her soapbox and spews hate and prejudice! Her hate speeches, disdain, lack of knowledge & empathy for the chronic pain community are outrageous. She also states that she’s a pastors wife! Which in a stereotypical sense, should make her more kind, loving & empathetic (on the contrary). I’m definitely not a cold or callous person. I deeply care about others & especially my fellow chronic pain patients. But I pity her in her for the way she’s unable to get help for her grief. I’m terribly and deeply sorry for anyone who’s lost someone that they love to any kind of addiction. She lost an adult child to overdose of prescription opioids. She’s made it her fight in life now, to rid the world of the “evil narcotics”. Do you think she knows that the statistics prove that only 1-3% of prescription opioids ever result in overdose?Check out this new report from the Cato Institute

It’s the illicit fentanyl and Cara-fentanyl from Mexico & China that are the problem! It’s not legitimate chronic pain patients with legitimate prescriptions from licensed pain management physicians that are to blame for this manufactured “opioid crisis”. The opioids are only a tool. Just as guns, kitchen knives and cars are all tools. These tools don’t kill people any more than opioids “kill people”! There’s a genetic link to addiction. There’s also a distinct difference between addiction and being dependent physiologically to a medication that one has taken for several years to decades. With addiction, the addict must make a conscious decision to get the meds, tell lies, keeps secrets and physically take the increasing amounts of drugs to give them a “high” or a euphoric feeling! They ruminate look at the clock, just waiting for their next fix! Chronic pain patients, for the most part; were never given the “luxury” of a choice! Most are people living the rest of their lives with high amounts of ongoing daily chronic pain; with no end in sight! The average chronic Pain patient, is living a life sentence in agony through no fault of their own! Usually an unsuccessful surgery, freak accident or a motor vehicle accident. Today we have an “under & untreated pain crisis”, with suicides from pain mounting in numbers weekly. A very knowledgeable and vocal physician and chronic pain patient advocate, Dr Thomas Kline, MD, has kept a record of these rising number of suicides.

Chronic pain is in fact a disease; as explained in this article in Health Magazine (February 2016) and in many other news articles. It’s Origin is Neurological. Scientists now believe that one cause of chronic pain is a dysfunction of the nervous system & includes the misfiring of nerve signals long after an accident or injury. According to this article: http://amp.timeinc.net/health/health/condition-article/0,,20187942,00.html, Neurons (cells in the nervous system that communicate with each other) become overexcited and keep firing, even after the original cause (injury or illness, in some cases) has long since passed. The person receives persistent pain signals.

If I may be so bold as to speak for the majority of the chronic pain community, we are not insensitive or calloused persons. In fact, I’ve never met a more caring, empathetic group of citizens. We care very much that people have lost their family members to the disease of addiction. We grieve for their loss of lives and love.

But we are grieving too! We have had so many deaths due to either suicide, untreated or under treated chronic pain since the CDC Guidelines appeared in 2016. Read this: Article by Dr Jeffrey Singer MD, Cato Institute. Dr Singer states that, “patients have become the civilian casualties of the misguided policies addressing the opioid crisis.” These “guidelines”have somehow become “law” to the majority of anti-opioid zealots; along with many physicians and pharmacists!

I wrote to the CDC and if you look at their response to my letter here(*& in photo below) A Response letter sent to me, from Exec Secretary of CDC, they state that “the CDC Guidelines are not meant to be rule, regulation or law. It’s not intended to deny access to opioid pain medications as an option for pain management”. I also agree that nobody should be denied pain care. That these are just supposed to be nothing more than guidelines. They weren’t meant to become the Law!!

Now there are admissions of the over fabrication of statistics by the CDC. Also, the AMA has come out with their own resolutions to these Draconian CDC Guidelines. You can find what they’ve written in this article by The Pain News Network https://www.painnewsnetwork.org/stories/2018/11/14/ama-calls-for-misapplication-of-cdc-opioid-guideline-to-end

This person calls herself an investigative reporter. People like her feel that because they have an audience & a platform; that they can stand on their soapbox and spew misinformation and hatred due to unresolved feelings of loss and grief! But they are just plain wrong!

When I opened up Facebook to try and reason with her. To attempt to discuss and/or debate like adults; I found that her page was blocked from any comments or discussions. That’s when you know you’re on the side of light and good. When you’re willing to discuss hard subjects in a civilized manner. But when discussions are cut out and blocked; that’s when we know that a person just wants to pontificate and spew hate!

Lastly, I wanted to add that this person should be in violation of the ADA, for her written comments regarding Cindy Steinberg. She made derogatory remarks about Cindy, a very well known pain patient advocate and friend of mine! I don’t think she is allowed to say the things that she said about Cindy supposedly being “theatrical” because she used a cot in between her statements regarding the opioid hysteria. This reporter even went so far as to say that Cindy was “laying in her her cot while testifying to Congress.”! Gee, I saw the video and it sure appears that she’s sitting in a seat discussing the situation in an intelligent manner. Here is part of Cindy Steinberg’s message:

“In the near term, we can and must restore balance to opioid prescribing with depoliticized, rational and cleareyed recognition of the risks and benefits of these medications,” she said, according to her prepared remarks. “In the long term, we must invest in the discovery of new, effective, and safer options for people living with pain.”

What’s wrong with that message? How could any sane person find something incorrect or one-sided, with that direct quote”. On the contrary, Cindy spoke intelligently! She discussed ways to help end opioid hysteria and the under-treated/untreated pain crisis today!

Lastly, if this one-sided, so called “investigative reporter”, would share an ounce of the truth with her readers; she’d have not lied about Cindy “laying in a cot while testifying to Congress”. Cindy, as you can see from the video of her testimony, is sitting upright in a chair as she speaks to Congress. But would there have been a problem if she had been in a cot while testifying? NBC & this reporter could very well be violating the Americans with Disabilities Act? In what world is mocking a disabled person OK? Isn’t there an ADA law that calls for accommodating persons with a disability?

Below is a photo from a portion of the return response letter that I received from the Executive Secretary of the CDC:

Here are some great resources for those who are skeptical of my words here today:

  • ALSO: Here are a couple of articles written by the person being referred to in my article today:
  • Lastly, I just want to add (so that I an not accused of being a “mouthpiece” for the USPF) that I resigned from the US Pain Foundation in September 2018; after only 8 months as a Board Member & 3 1/2 years as a volunteer Ambassador. I was planning on staying to try and help them rebuild. But the moment that I felt my integrity was challenged, I resigned.
  • Fight For Our Lives


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    Hello Luvs,

    Here is a video that has taken me awhile to get out. I asked for submissions from every chronic pain patient on LinkedIn, 3 Instagram accounts, 3 Twitter aaccounts, 5 Facebook pages and 5 or 6 Facebook groups. I requested video submissions many times during November 0f 2018. I received a total of 8 videos. I waited to produce and edit this video until this week.  It is the First week of February 2019 and the video was posted today 2-7-19. I added the closed captions for other Deaf/Hard of Hearing persons like myself.

    Please watch this  video on YOUTube and make comments. Share this video on Twitter to our POTUS and to the FLOTUS. Please share it to Fox News, Greg Guttfield and any other news, media or government agencies where you think someone may be able to help us. Please share, share and share. We need someone to see us, hear our stories and believe in helping 100 million chronic pain patients.  There are about 26 million who depended on Opioid prescription pain medications and now they are mostly unable to obtain any relief whatsoever. Thank you for watching and for sharing this video far and wide.

    This video is not affiliated with any group or organization. This was totally my idea and I requested, received, produced and edited this video on my own. These ladies are brave and I’m so thankful and grateful for their pleas and their stories. Thank you again! Have a wonderful day!  If you just click on the link below (it is a safe link, I promise), it will take you directlly to the YOUTube video that I uploaded. If you prefer to visit it yourself without clicking on the link, here is the URL:

    or click the link below

    (**IF YOU NEED CC FOR DEAF/HOH, PLEASE USE THE BLUE LINK AND GO TO THE YOUTUBE VIDEO WHERE I’VE PUT THE CC JUST FOR THOSE OF US WITH HEARING LOSS):

    Fight for our LIves -Full Video Here

    Don’t be afraid of opioids


    There is a gene called “addiction” that some people are born with and others are not. This gene can cause a human being to become an opioid addict. It is not the medication that causes addiction. The medication is just a tool, that if used improperly can become deadly. But again, the medication is an inanimate object or a tool! Similarly a gun is an inaminate object; but when people use it in the wrong way, it can kill!!  Therefore, people should not be afraid of Opioids any more than they should fear Insulin if they are Diabetic. When used responsibly and properly, as the high majority of chronic pain patients do; opioids can give back lives and save families. Just the same way as a gun can save lives and families, when used properly and for specific reasons. The idea that those opposed to opioids for chronic pain need to understand is that

    1. No one will force them to take opioids, so they should stop trying to force a ban on opioids for chronic pain patients.
    2. Opioids don’t “kill people”. They are only a cause of death if they are taken incorrectly (as with most medications) or if they are used inappropriately.
    3. Chronic pain patients are not addicted to their opioid pain medications. They may be dependent or tolerant but again, there is no “high” involved. There is no scrambling for a “fix”

    I found more interesting information about the confusion surrounding opioids and addiction. If you try to GOOGLE “how many people have died from PRESCRIPTION drug overdose in 2018 or 2017?”, it doesn’t give you a straight answer! But if you go to this article written by Josh Bloom Who Is Telling The Truth About Prescription Opioid Deaths? DEA? CDC? Neither?  It becomes much more clear what is happening, sort of?

    Let me explain in a bit more detail. You see, Andrew Kolodny, the “king of detox houses”  has become very rich.  He appears to be greedy for more. This man just cannot tell you enough about how chronic pain patients and drug addics are in the same category. Yes, it’s true and he says those words directly on this video at time spot:  1:37 to 1:54 Washington Post Video: “Dr Andrew Kolodny; opioid crisis “not and abuse crisis, it’s an addiction epidemic” ….therefore, I have surmised (along with many other advocates, that this man is just trying to prey on those who are lost to addiction and those who have lost someone to addiction overdose. But do you realize (I’m guessing he does not or he’s covering it up?) that the opioid deaths are not from prescription opioids! They are from illicit Fentanyl/Carafentanyl from Mexico and China mostly. These are deaths that are from mixing illicit drugs possibly with some opioids and the PROP and CDC etc. are then calling them all “opioid deaths”.

    In Josh Bloom’s article above he shows the lies, the outright blatent lies that people are being told by the DEA and others. Read this quote from his article above, dated 11-5-18, “Controlled Prescription Drugs (CPDs)…are still responsible for the most drug-involved overdose deaths and are the second most commonly abused substance in the United States.”  (from the  2018 National Drug Threat Assessment,Drug Enforcement Administration, October 2018) ….but it’s not true…it’s deceiving. Josh Bloom adds that “there was a newly released 164-page report by the DEA manintaing that controlled prescription drugs are killing more Americans than any other drug”.   He concludes that this is either deceiving or just confusing.

    You see, other drugs are included in these “death tolls” from Opioids. It’s not just prescription opioids but there are depressants,  stimulants and other drugs responsible as well. They are all being “lumped together”. There is even a CDC chart in his article that shows how they seemingly intentionally misled all of the readers. The chart shows “drug poisoning deaths” and in very very small print it states “The CDC drug poisoning death category medications” was formerly “prescription drugs” but was changed for two reasons: 1) the category includes Over the Counter Drugs…..” So now OTC drugs are added too this mess as well. He also included that “annual deaths from NSAIDS vary widely they are significant:  3,000-16,000 deaths per year.”

    Medications for chronic pain illnesses are not “bad” and should not be causing so much turmoil in peoples lives. The PROP and people like Kolodny and his minions, have decided that they are “evil” and so now they are spreading it like wildfire. There are his drug treatment centers and the creators of Suboxone/(Buprenorphrine-Reckitt Benckiser and others who want to “get rich” by hurting the innocent people who are chronically ill. The RBI corp. even went to far as to pull off a shocking scheme to profit off of heroin addicts in 2016. You can read about that in my other article called “About Suboxone, Buprenorphrine and Naloxone” . Andrew Kolodny even made a statement to the effect of how this generation of chronically ill/disabled persons living with chronic pain need to die off, so that the next generation won’t be addicted to opioids for chronic pain. Can you even believe that train of thought? The next generation won’t even have the option to have opioids for chronic pain (*or experience pain relief). This in an attempt to stop addiction and overdoses from occurring. In other words,  let’s just knock off  the elderly, the disabled and the chronically ill; so they won’t be a burden to anyone, is that it? Get rid of all of us so that we won’t suck the system? So our kids won’t know anything about pain control? They will be brainwashed into thinking that mindfulness, acupuncture and grounding can “cure” chronic pain illnesses? Do people really believe that? I do believe that some of the complimentary therapies may alleviate a minimal amount of pain for the short term. But they’re not a long term answer for chronic pain.  I know of one U.S.A. Pain organization that really “pushes” the complimentary therapies. Consequently they have actually abandoned a large number of the pain community who rely (*or did rely) on opioid medication therapy for pain control. Where are the human rights groups and other organizations who have the power to affect a positive change for the pain community? Why hasn’t anyone physically helped to change the misdirected concocted fear of opioids?  I’d truly like to have an answer for these questions? It’s hard to believe that those who blindly play “Follow the Leader” to the likes of Andrew Kolodny, just want chronic pain patients to “go away”? But as I write this article, there are more states petitioning to become “right to die” or assisted suicide states.  It is already legal in:  Washington DC, California, Oregon, Colorado, Vermont, Hawaii & Washington (still being disputed in Montana). Are we really 100% useless and disposable, like garbage to be thrown away?

    Thats a scary thought to ponder! There are people such as Andrew Kolodny and Organizations such as the CDC, DEA and PROP, who would rather that I die than stay here with my husband, children and grandchildren for as long as humanly possible? All I need to be able to do is to take a pill a few times a day or wear a patch and I can live some semblance of a life outside of my bed or the recliner that I now live in for the best part of most days now. The Opioids do not make us “high”. I’ve never been “high” and all they did was take the edge off of a whole lot of pain; due to a long list of high pain chronic illnesses. Most of us, who are living with chronic pain, just want to live some kind of life. Don’t we have that right, just as others without pain do? Many of us were victims of accidents or crimes or just plain unlucky. Why do they want to make our life unbearable? Or even worse yet, why do they want us dead? Is this Eugenics coming back from the early 1900’s?

     

    Dependence Does NOT Equal “Addiction”


    One thing to know is this …Physical dependence and tolerance are “NORMAL” physiological consequences of extended opioid therapy for pain and should NOT be considered “addiction”….(*FROM “Michigan.gov)determination-quotes-2b65cd82f385b22d6dd21fd2f9ce5bf9f

    Hello Luvs,

    Today I have so much on my mind and I have a lot of information to share with you. Most of the information that I have is from my own support group, my own experiences and Internet sources (which I will list).  I was in a Motor vehicle accident in 2002. I have been through so many medical issues due to that accident. I have suffered through 8 years of PT/OT, 3 years of MTBI rehabilitation, approximately 10 surgeries, worsening Dysautonomia/POTS/NCS, a CVA (stroke), Mild Heart Attack and just too much to list here today without boring you to tears.  I have chronic pain and along with that, my body ended up with a Neuro-autoimmune disease called “Complex Regional Pain Syndrome Type II”. It’s also known as “Reflex Sympathetic Dystrophy type II”. Some people will call it “RSDII or CRPSII”; as there are two types of this disease: type I is from an Unknown etiology and type II, the one I suffer with, is a result of a Foot surgery in 2007, 5 years following the car accident. My type is also called “Systemic”, which means it is in my body pretty much everywhere now. That happened by accident through years of it’s continue spread.  Then following my 2nd pacemaker surgery in 2013, the absolutely wonderful Neuro-Cardiologist, who did the surgery researched the disease and found that sometimes a surgeon can help prevent the disease from spreading or going systemic, by doing an internal surgical wash of “Bipvucaine”. I was hopeful and happy. I just knew it would work. The fact that he cared enough about me to even try that, made me just feel so happy and cared about. But unfortunately, it did spread and mine is now systemic.

    At first I was tested, re-tested, Neuro-Psych tested, Psych tested, Pain clinic tested and given just any and every kind of test available. I had several specialists including:  a Physical Medicine and Rehabilitation physician, G.P, Neurologist, Cardio-Neurologist, Cardiologist, Psychologist, Neuro-Psychologist, Orthopedic specialists of different types and more! I ended up being hospitalized for “Pain control” by the  G.P.that I had been seeing since 1986! When a newer physician in his office came to see me and he was quiet and kind and really seemed to “listen” well etc. I asked if I could “switch” over to him, as it was the same office. It was all good and I had been referred to a pain specialist, Dr. D. Dobritt in Michigan. He helped me for 3 years and I did everything asked of me. I even got a medical record letter from the Pain Pycshologist and Psychiatrist Dr’s that he uses, stating that I do not have an “addictive personality”. I never smoked, drank or did any recreational drugs. I barely ever took an Aspirin if I had a headache prior to that car accident!

    I stopped going to the pain Dr. because he told me that he wanted me to have an “Intrathecal pain pump” surgically placed into my spine, which would drip 1/300th of the amount of oral medication I would need. But I had been in an auto accident and I was tired of “fighting” for everything I needed with them. I did win a lawsuit and I was put into “Catastrophic claims”; but still could not get them to pay for the pump. I surely didn’t have the money and my regular insurance would not pay since it was not their place to pay for auto claims. I was going to try the pump trial at least, just to see what comfort it might give me. The auto insurance said “NO” and I’d about had enough of IME Dr’s and fighting for what I needed. I gave up and quit everything finally after 8 years of PT/OT and 3 yrs of TBI rehab and about 10 or more surgeries. I think I told you already that I’d been tested by the Psych Dr’s at the pain clinic and they gave me a medical record letter stating that “I do not have an addictive personality”.  It’s true and even when the Dr’s gave me Vicodin and other meds to try and help my pain, I suffered through the pain and always took less than what I was prescribed. The Psych Dr. even wrote in my letter that “Suzanne does not want to take the medicine for pain as it is prescribed, but instead tries to get by with less”. He continued by writing that He told me to take the allowed or prescribed amount and “not to worry” about it because the Dr. has prescribed it for me.  Well, if you know me at all, I’m a person who does not like being “controlled”. I did not ever want to be feeling “controlled” by some medicine or feel “married” to my pain Dr. !!  As time went on though, I didn’t just suffer from the events of the car accident. I acquired a very painful or the “MOST” painful of all chronic pain diseases, called “RSD- Reflex  Sympathetic Dystrophy” . I was first diagnosed with CRPSII by the surgeon who performed the foot surgery. I got a second opinion only because I’d never heard of that disease before and I just wanted to be certain. I got a 2nd opinion from a well known staff Physician who specializes in Orthopedics of the foot/ankle. Then I got a 3rd opinion and 4th opinion. My pain got worse and I was forced to take the medicine prescribed for me.

    When I chose to not get the pain pump, that pain Dr. told me pretty much to “get lost”. No, he did not use those words, but that is how it felt to me. I always was a good patient and did all that I was asked to do and tried to do it even taking less meds than I was allowed to take. He would not even talk to me again or let me set up an appointment, but instead, he had his physician’s assistant, Jim G., give me the news.  He called and told me to “just go ahead and have my General Practitioner, Dr. Pete Bullach Jr, take over prescribing the pain meds because he, as a pain Dr., is “under a microscope” and prefers that the pain meds are not provided via his office. He said that “Dr. could consult with him any time needed”. He told me not to make another appointment because “there was nothing left he could do for me and my pain”. I was devastated because I felt that we had a good working Dr/patient relationship. I felt believed and I believed in him. But as usual, I just did what I was told to do and kept seeing my GP and he did the prescribing.  Unfortunately as my pain got worse due to more surgeries and the spreading of the RSD/CRPSII, and the new diagnosis’ of R.A., Chiari I malformation, Degenerative Disc disease and now Hypermobility syndrome III and more, the doseage was just increasing.  Dr. Bullach just increased my pain meds and offered me no other future or help for the future.

    The past 3 years, I was asking him to take me off or down from the pain medications. I was afraid that I was taking too much even though it was helping. He told me time and time again that I should “just let him worry about it”. He also told me that the medications “got me out of the hospital bed that was in my living room” and I “don’t want to go back to that”! He told me to “let him worry about the pain meds and just continue to do what he said”. Every time I would bring up trying to go down in doseage, he would tell me to “just let him worry about it”! He even told me that he had a plan worked out that when he felt ready for me to go down on my pain meds, that he would just put me into the ICU at the main hospital. He would “knock me out” for a few days and they’d watch me carefully because of a previous CVA and heart attack in ’05 and ’06. When I awoke, I would be “off of the medication” and not have to go through any withdrawls, or at least not remember or feel it at all. I would be safe and watched in the ICU. In no way did I feel like I was an “addict” or a “bad person” at that time. I felt that I was doing everything I was told to do by a Dr. that I trusted with my LIFE and my husband’s LIFE!

    Well, from my couple of previous posts about this subject, you can understand how totally betrayed and flabbergasted I was in December 2014, when with only 2 days notice, I was told that Dr. Bullach “was leaving and going to work at an Urgent Care an hour away in Jackson, MI”. Later I’d find out that he’d known about his new position since October 2014, but failed to share that information with me and many other of his patients.  In October I had even brought him a letter from my medical insurance company, stating that they would not pay for my pain meds any longer in the doseage that he was prescribing, after March 11, 2015; unless a certified pain Dr.agreed with his treatment plan. I brought and showed him that letter in October and he told me “not to worry at all”.  He said that he “would personally speak to my old pain Dr., D. Dobritt, and he would send a letter explaining everything to him and some of my records that he would need.”  He told me that I had nothing to worry about, that he would “take care of me and of everything”.  When I walked into his office that December day, in 2014, you can imagine how blindsided I felt.  Then later to find out that he was investigated by Federal marshals or agents (I found this out from a legitimate source or several actually)for over medicating many of his patients and he was actually “fleeing” to get out of trouble before trouble came to him first!!  He fled to an Urgent care facility where he’d be incapable of writing such prescriptions again. He lied straight to my face telling me how he was “working too much and he missed his sons and he was going to work someplace else to be able to free up time and be with his wife and kids more often”. It was a bold face lie, he betrayed me and it feels really awful.

    I went to the pain Dr. appointment on Jan 2, 2015 and in my previous posts, I think I already explained what happened. I told him that I did not want to and would not go to a “Detox” clinic. That was not what I deserved after being told even by him several years ago to “trust him” and “take the meds prescribed” and that “it was OK and it was safe”. I am a strong and motivated person. I’ve been through alot of terror and frightful experiences, including painful ones. I can do this and I will do this. My husband called and made a second appointment for Dr. D. Dobritt, the pain specialist. He told the secretary that I’d been going down on my own, with the pain meds and that I’d gotten down at that point, at least by 75% of what I’d been taking at the time of my visit one month prior!  I went to my scheduled appointment that was at 8:00 am on Feb. 16th, 2015. If you know anything about pain, you know that is very very early for someone who has a hard time just putting their feet on the floor in the mornings, due to extreme pain. Add into the equation 75% less pain medication and you have a woman in some real pain, but a determined woman who was doing everything on her own with the love and support of her husband. When I arrived at the pain Dr. appointment, they let me sit in the waiting room for about 1/2 hour, only to find out that “the Dr. will not see me”!  What??? Why?? Why would they let me make the appointment? I smelled something rotten going on there and it was an awful feeling.  I had some young office girl tell me that the Dr. refused to see me “unless he had a letter signed from the DETOX Dr. (*Dr. H. Malinoff) that he had recommended that I see at my last visit”.  I told the girl that I’d already gone down on my own 75% or more! I told her that I didn’t need anyone else’s help. I was not an “addict”, I would Never take Methadone or Suboxone and after researching that Dr. who Dr.Dobritt wanted me to see, I realized that he was not for me! A person who is on SSDI for PTSD and who’s suffered at the hands of numerous “bullies”, just did not need another “bully” (Dr.) in her life! I read 16 reviews of this physician. ALL 16 were really bad reviews! People said he was “Dr Jekyll and Mr Hyde” and that he “put them into tears by calling them names”. I don’t go by reviews usually. I know that disgruntled people or patients will write bad things when they don’t get what they want sometimes or when they are angry! I don’t put alot of heart into what I see usually when others write bad things like that about Dr’s or places even. I know that there are disgruntled pain patients out there who want more meds and when they don’t get them, they go to the computer and write nasty things about the person who didn’t get them what they wanted. I know this is true of SOME, but not of ALL!  I know this because I am one of the valid/honest writers & readers not asking for anything except the truth and peace.  I’m not being vindictive in any way.  This is just a venue to allow my readers and other pain patients hopefully, who are like me, to know the truth of what has happened to me and what can happen even to honest and good people.

    This “detox” Dr., as I read more about him on his own website; told of a story how he broke his foot and “walked on it for 3 months.” His wife finally forced him to go to Orthopedics and he had a surgery. He tells of how he “went through all of this without taking any pills for pain”.  He also stated how if someone wakes up in the morning, puts their feet on the floor and they have “no pain”…then they should “look in the Obituaries, because they should be dead if they have no pain whatsoever”!  I could not believe this was a Dr. who was revered by this other pain Dr. and the physician in the GP’s office who took over a few of Dr. Bullach’s patients!  This guy who takes people off of pain medications from the moment they walk into his office, and puts them on a program of Methadone or Suboxone or worse; and then forces them to go to 12-step programs can NOT understand what living day in and day out, 365/52/7/24 in chronic intractable pain is like?  Having a broken foot for 3 months and it “hurting when the weather changes” is still not the same as having: systemic CRPS II, RA, OA, Chiari I, Long thoracic nerve pain, bilateral patella femoral pain, Lumbar and Cervical Radiculopathy, Polyneuropathies, and Degenerative Disc Disease all at the same time!! He does not know what PAIN truly is.

    A true pain patient like myself tries hard to hide it. This is sometimes mistaken as “not really feeling that badly”. We try hard to hide our daily struggles with pain because of this exact situation. We try to hide it because nobody really understands. Try to think of a time when you were in really bad pain, then multiply the intensity by 10 times or more! Then imagine having that intensity of pain day in and day out like I mentioned above for 365 days per year, 52 weeks per year, 7 days per week and 24 hours every day without relief or without very much relief! Try next to imagine this pain is never going to go away! It’s going to be there for the rest of your life. That kind of pain is hard for anyone to imagine, but it’s nothing like a broken foot for a few months! Also, taking medication that several Dr’s all knew you were on for 12 years or more and doing exactly what you are told by your physician, your GP, does not make an “addict”.  Just because I put on make up and try my best to look as good as I am able, does not mean that I feel wonderful at all!

    I feel as though I am “stuck” in a body of which I have no control. I have to go each and every day with nobody truly understanding what I go through. If I talk about it too much, then nobody wants to be around me. If I don’t talk about it, then they think it’s not there. It’s a no win situation even when I visit the Dr’s office. They want you to give them a Number of how you feel, on a scale from 1-10, with 10 being the worst pain you have ever felt.  First of all, that would be different for everyone because maybe the worst pain you’ve ever felt was an ingrown toenail (and those do hurt, by the way!)?? What if the worst pain you have ever felt was childbirth? At least you get a “prize” at the end of it and there IS and END to it! So you see that cannot work for everyone. Just like my pain is in various places throughout my body. My shoulder may be a 3 today but my lower back may be an 8! But they only want “ONE” number to describe your pain that day!!! Geesh!

    I’m luckily getting some guidance from a GP that I’ve known since 1986. But he really doesn’t want me for a patient. He feels “stuck” with me because my GP left in a Hurry and I had no place to go!   I refused to go to a pain /detox Dr. who wins prizes for writing these “great articles” about how he “helps” people with pain get off of their medications. This detox Dr. gets articles in “Detroit Hourly” magazine for his “greatness”.  Well, talk to the patients because anyone can be “book smart” and write an article with precision and big words. But not every Dr. can have empathy and accept a challenge with dignity and kindness. That is what I want, a physician who will treat me with the respect that I deserve. One who will look at me and not my husband, when I bring him into my appointments with me. Lastly, I want a Physician who will listen to me and believe in me as much as I believe in myself.  It’s taken many years for me to believe in myself. But I know that even though this is awful, painful and very difficult; I can do it!  But then what next? I will always need something for pain! What do I do as I decrease my pain medicine dosage even more? The pain is increasing and my mobility is decreasing. I can now do something for an hour before I need to stop and go home to rest. Prior to this time, I could at least go out for a few hours before having to go home and rest.

    Lastly, just because a pain patient can do something one day, such as go shopping for 2 hours, doesn’t mean that the next day or next week they’ll be able to repeat that. Chronic pain is such that it is just as confusing to the patient/sufferer as it is to their friends, family and physicians. It is like “hot and cold”…..one day we can do something and the next day we may not be able to do it. I may wake up tomorrow and not be able to “go out to lunch” as I had planned. Friends and even family get upset when we cancel plans. Each day is different and we never know how we will feel. I try very hard to be “normal” and chronic pain is hard to understand if you do not suffer with it. The Dr’s who are “pain” Dr’s have not suffered from it, for the most part. They don’t know what it feels like, they only know what they learned from a book and from their patients. If they are a good pain Dr., they will learn from their patients.  Remember, nobody WANTS to feel this way. Shame on the Dr. who sent me away because I wouldn’t go to the “detox” Dr. whom he wanted me to see! Shame on him for not helping someone who he’d already known, trusted and believed at one time and for 3 years! He wiped his hands of me and didn’t want to be involved with helping someone else’s “mistake”.  Just shame on him! The worst thing that you can say to a chronic pain patient  when they are taking pain meds, is to say that they have a “drug addiction”. People who do not have a history of addiction or problems with drugs, and who are living with chronic pain, like myself, do NOT WANT to take these medications or narcotics!! WE/they need them to function and get through the daily activities of living. Our Body is physiologically dependent on them and we are tolerant of them.  But a definition of “addict” is not equal to “someone in horrible chronic pain with a legitimate chronic pain disease who has been prescribed Narcotics / Opioids to help ease their pain for years and then suddenly someone decides it’s time to take them away and send them to Detox!

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