A Letter To Our Leaders, Regarding The Pain Crisis


I have copied and posted below, this 2nd & 3rd letters that I’ve now sent to our President and several other politicians/legislators. If you have someone else that you’d like to send this to, please feel free to copy & paste my letter and send it to any legislators.

Here’s a list of recipients so far:

  • President Donald J. Trump, 1600 Pennsylvania NW, Washington DC 20500
  • Michigan Senators Debbie Stabinaw & Gary Peters:
  • 1: senator@stabinaw.senate.gov
  •  Senator Gary Peters  C/O Patrick V. McNamara Federal Building, 477 Michigan Avenue, Suite #1837, Detroit, MI 48226

**my US state of Michigan representative Hailey Stephens: Washington, DC Office   

**my US State of Michigan representative District #20:

***mailto:MattKoleszar@house.mi.gov

Dear Mr. President,

I represent only one out of 100 million people in the chronic pain community. Out of that number, there are an estimated 26 million of us who urgently need your help.  Many people in the United States of America are  dealing with horrific pain on a daily basis.  I stand along with them  & implore you to help put an end to the violation of human rights that is taking place. 

The CDC, DEA and “Big Brother” Pharma companies are “hurting” the American chronic pain Community. We are losing access to medically necessary medications that enable us to live some semblance of a life. 

We are and have been losing access to our pain relieving medications since the implementation of 2016 CDC Guidelines.  Those guidelines were written by addiction experts and there was not one Pain management Dr. present. They were also written in secret, behind closed doors by a group of people who know nothing about high impact, ongoing, chronic, painful illnesses.

A Dr. should not be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our pain Physicians are leaving in droves because of them & the 2016 CDC Guidelines. 

The  “Opioid epidemic” is about illegal/illicit fentanyl brought here from Mexico & China. It’s not about us, the 100 million chronic pain patients in the USA. Only 1% of legitimate chronic pain patients who are legitimately prescribed opioids, for high amounts of pain, ever become addicted. It’s as though our country is now torturing and punishing people for being ill.

Mr. President, we are not addicts and we are not “addicted”.  A person can be “dependent” on a medication and not be addicted! They are two very different situations. We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their “drug of choice” at any cost.  They look forward to taking them because of the “high” they get. A legitimate chronic pain patient who’s done well for years on a stable dose of opioid pain medication, doesn’t get any sort of “high”.  We also take our medications responsibly.  We get some relief and reprieve from the daily chronic pain that we live with. 

Please help us get back the physician / patient relationship, without interference from Pharmacy’s, insurers, the government and politics.  Please help us to keep our Drs in charge. It should be the decision between patient/physician to choose what is necessary and best for our pain control. They went to medical school and the government did not.

Many pain management Dr’s are leaving the practices they’ve built and the profession they’ve worked hard at, to achieve. They’re  afraid because they are being wrongly targeted by the DEA . They aren’t free to prescribe medications that help to relieve pain anymore. 

People in the USA in 2019 are being tortured and hurt by this on a daily basis. Just yesterday, I read the story of a 94-year-old woman who shattered her kneecap and was taken to the hospital emergency room. They immobilized her knee and sent her home without any pain control at all. Can you even imagine shattering your kneecap and not getting any thing to help with a torturous pain like that?
Mr. President, please help us? I understand there are people who die from overdoses. But they are a totally separate group of people who need a different kind of help. It shouldn’t be at the expense of an entire separate community of citizens. People In pain are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and they’d been living some semblance of a life while on a regimen of medication for pain control. But because of “fear”, Dr’s are taking away the little bit of life that some of us have left. 

I also don’t believe that anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when an inexpensive & safe pill, with little side effects can help so much. 

I implore you to help the estimated 26 million chronic pain patients in the USA, who are “dependent” on opioids for pain control & who are diligent and take these medications responsibly. Help us to get back the freedom of choice. Get us back to the pain management medication regimens that are life sustaining for us with more tolerable pain levels.

Please read my letter and talk to me if you’d like. We need you to understand that we are “chronic pain patients” and not “addicts”! We are just real people living with unfortunate circumstances & high pain illnesses. Please help us to receive the medications that give us some semblance of a life for ourselves & our families.

Sincerely,

Suzanne B. Stewart
Recipient of U.S. Pain Ambassador of the Year Award‘16, Mentor @RSDSA, freelance writer, Blogger/Blog “Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, Director of communications for Deaf/HoH for CIAAG, patient advocate for Deaf/HoH

Do No Harm?


There’s a tragedy that’s happening to not only me, but millions of U.S. citizens, almost daily now. It seems that each month, many pain Dr.’s are terrorizing, demeaning, denigrating & dropping their sickest patients who live with mostly life-long chronic & disabling painful illnesses. (I’ll be referencing my personal experiences for the purpose of this writing).

My Pain Management Dr. seems to be terrorizing me just a little bit more….then a little more etc.. When I started there several years ago, he had tears in his eyes, as I sat sharing my history and past test results with him. He told me he would take me on as a patient if I’d be willing to stop taking this one quick acting pain med. (*of course after 12 years taking it), my body went through physical dependence w/d and I felt horrible for awhile, but I got through it. My heart Dr helped by prescribing 2 meds to help me physically. Things went along OK, until my PM Doc, told me, during my September 2018 visit, “that he was stopping my LA/ER medication”. He informed me he would begin, THAT day, all at once-“cold turkey”. I didn’t freak out, but I reminded him of my past h/o stroke and heart attack and how it’s not safe. He said he’d “let” me have 1 more month at 25% less, “to help me be psychologically ready”(wth???)… so I went with it. Next, I called my heart Dr and GI dr & they wrote a letter to my PM Dr., stating “that this wasn’t safe”. Also they explained how “it’s been working since 2003”. They pretty much wrote, “don’t mess with what is not broken”. They also reminded him of my illnesses, including Gastroparesis & my history of a stroke, heart attack !

The PM Dr became quite angry & said “their medical license isn’t any better than mine! Let them prescribe it to you, if they want you to have it!”… he ended up doing a quick taper and covered his a_ _ , by offering me a LA/ER oral medication that he knows I cannot take because of the Long QT & Gastroparesis.

Ok ….so I stopped the patch, got sick -worsened pain etc/physically. I went from doing a lot of volunteer work to sitting in my recliner 16 hours a day-due to pain.

Therefore, NOW each month that I go to him, I get a stomachache, nausea & diarrhea etc. & my anxiety is high. Last month he decided to add to our little conversation that “he won’t interfere right now”, but “they” want chronic pain patients to stop taking anymore anxiety medications. I’ve been on mine -(a very low dose) barely once a day (I take zero for many days at a time also)… but he says since HE doesn’t prescribe it, HE will not interfere “YET”! But soon he won’t be able to prescribe my short acting pain meds, if I am prescribed my small amount of anti-anxiety meds! Then he let me go home…until this month.

This month he surprised me with the fact that not only IS HE FORCED to prescribe me Narcan, but that I MUST pick it up if I want my pain (SA) medication!!! I told him “I don’t want or need it! I’ve been on less than I had been taking! Also, I have never had an issue since the guy ran a red light and hit me with his car and started all of this!!” He insisted, so I shut my mouth and left. He continued to send both scripts to pharmacy. But first he had to tell me how the “Narcan is like a fire extinguisher! You keep it around in case you need it!” Ok, but it’s different than that because a fire could possibly happen!! But me overdosing is NOT a possibility, when I’m on half of what I’d been on since 2003 -until now!! I NEVER TAKE MORE OR TOO MUCH!

I told my husband that I didn’t want the Narcan in my history, my records and I don’t want to be somehow misrepresented or “flagged” and I instructed him to “Not pick it up”! He went to the pharmacy & talked to the pharmacist. They told him “that was fine. The Dr. can offer it but I don’t need to accept it”, especially since I don’t have SAD or SUD!! Also, it was not covered by my Medicare advantage insurance plan. It would’ve cost $120 “out of pocket” !!!

Tell me what’s wrong with this picture?? Drug addicts are given free needles and free special clean disposal of those needles even in selected Starbucks stores now!! Addicts are given FREE Narcan!! What the hell is going on in this country?? A good, law abiding NON-addict has to pay and be punished for doing nothing–ZERO WRONG..& is told they must pay $120 for something they don’t want or need!! Nor will they ever need (btw, the pain management Dr explained how this Narcan expires yearly & I’d have to get a new one annually!!!????)! This is crazy, ludicrous and it’s “Market rigging!” They want sick & disabled people to pay for items that are not necessary and rig it so that they will not give them the pain medication that they need, unless they do so!!

This is wrong and bad and absolutely not right or lawful!! The pharmacist told us that we don’t HAVE TO get the Narcan filled & it’s not covered by insurance. It costs $120 out of pocket!

You can guess what happened and I’m good for another month! Until next month when I’ll be badgered, intimidated, terrorized! Also, the Dr (but actually the government in my Dr.’ chair) will try to fear monger me into less medication or some other life altering medication switch that I don’t want &/or cannot take!

Why can’t they leave us alone? Let me continue my treatment plan that has worked for 14-15 years?? Why do they have a need to terrorize us, demean us and eventually kill us all off ?? It’s all about money & big government studies without our consent!! It’s all about “Control” and “getting rid of the sick and most weak” persons in society so that we don’t drain the system without being productive!

What about all of those years that I worked and paid money into social security?? I deserve that back and I’m not getting government hand-outs!! Why is this happening?? This is all crazy Eugenics, Nazi B.S. !! Someone please help the chronic pain community NOW!! Before it’s too late!! A news station, a politician or a celebrity with a big voice, PLEASE HELP US NOW BEFORE ITS TOO LATE! I have lost several friends already because of this FAKE …NON-Prescription opioid / Opioid crisis!

Wake up American media, &/or politicians who have a heart; who aren’t money hungry or power hungry!! Wake up and help these citizens. There’s a large group of 100 million chronic pain patients who need you to step in and DO something to stop the suffering!!

The INTERNATIONAL Association for the Study of Pain (IASP), says that suffering is inhumane and unnecessary! International Association for the Study of Pain

Preamble

“The mission of the International Association for the Study of Pain is “to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.” Its overall vision is “Working together for pain relief throughout the world.” The most preventable form of human pain is that inflicted in the form of torture and inhumane treatment, whether physical or psychological. The participation by IASP members in acts of torture or inhumane treatment is therefore against the fundamental principles of the Association.

“For the purpose of this Declaration, torture is defined as the deliberate, systematic or wanton infliction of physical or mental suffering by one or more persons acting alone or on the orders of a public authority, to force another person to yield information, to make a confession, or for any other reason.” [World Medical Association. Declaration of Tokyo (1975). Adopted by the World Medical Association, Tokyo, Japan, October 1975.]”

S.O.S……HELP US!!!!

Too Little Too Late


So now we know that we’ve been human test subjects for a study performed by our US government (thanks to CIAAG, Lauren DeLuca & the administration of that Non-profit org.CIAAG website).

All along we’ve been discussing, writing and protesting with non violent rallies etc., to have our voices heard. The voices of the most chronically ill persons who have been living in an environment of fear, torture & Hell for the past 3 years, due to the CDC Guidelines. We know they were written in secret by a few addiction experts and others who had no knowledge of what chronic pain/disabling high impact chronic pain is all about. They don’t understand or know what it’s like to live with high amounts of ongoing, never ending pain 365/24/7.

Our government leaders allowed these people without any knowledge of chronic pain/painful disabling/lifelong illnesses, make medical decisions that changed and lost lives by the thousands and even hundreds of thousands. Here is a recent article by Dr Jeffrey Fudin, MD, in his blog “Practical Pain Management”. It is a great article and speaks to our government and it’s meddling in the lives of our own chronic pain patient community:

https://www.practicalpainmanagement.com/resources/news-and-research/too-little-too-late-us-government-backtracks-opioid-discontinuation

A Post About Bupenorphrine from Dr. Fudin


Here’s some much needed information about Bupenorphrine. It’s written by Dr Jeffrey Fudin at: paindr.com/buprenorphine-so-misunderstood/

Please remember that this medication is best used for people who have ongoing pain issues and who are also recovering addicts. It’s a mild analgesic at best and doesn’t work very well for people with chronic pain conditions, alone; without addiction.

Also, remember that you must be taken off of this medication for a couple of weeks prior to any surgeries. If not, then they’ll have a difficult time putting you under deep anesthesia. Of course, this is everyone’s greatest fear going into surgery. So just be prepared. Read up about these medications and be knowledgeable. Don’t just take whatever your Dr is offering, but research it ahead of time. It works for a certain group of pain sufferers, but it works AGAINST opioids, in your body. Here are a couple of my articles regarding this medication and also Suboxone and Naloxone:

About Suboxone, Buprenorphine and Naloxone/

And this one:

More-About Bupenorphrine, Suboxone/

Then there’s also this video:

Pain, Politics & Suboxone, Bupenorphrine

Protected: What Really Happened Between NPR, USPF and Me?


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The Opioid Hysteria Hits Home


Hello Luvs,

I wanted to write to you today to share with you something that I know many of us are dealing with these days. It’s about what happened at my pain management Dr. appointment on 11-8-18. First of all, every 30 days, I have to go and endure this treatment and I live with PTSD. It always rears its ugly head the day prior to my appointment with this Dr. or any new Dr. appointments. I’ll just refer you to my other article “Down the Rabbit Hole” if you need a reminder as to what has occurred up until now.

I arrived at the appointment which was in the late morning this time. I usually go in the afternoon because mornings are difficult for me, with my pain issues. But the past 6 months or so, I’ve had horrible anxiety when I know this appointment is drawing nearer. The closer it gets, the worse I start to feel psychologically and physically with the above symptoms on top of the pain. I decided to make this appointment in the morning because I thought it would not ruin our day so much. Just “get it over with” and be done; get on with our day. But it once again, did ruin my/our day.

I’ve had this pain management Dr. since July 2015, after my other Dr. of 15 years left suddenly. At that time I had been on the fentanyl patch and the lollipops for 10 years. This Dr. told me he would only accept me if I took myself off of the lollipops and I did it. I had to suffer through physical dependence withdrawals. I did it at home with my soulmate, my husband.

I’ve never rescheduled an appointment with him, nor have I ever been late. I’ve never run out of meds or asked for them early.  He knows of every medication that I take or have taken and honestly, I don’t feel like its up to me to have to “remind” him that I sometimes take Fiorcet for Chiari Migraines. He and I had a mutual respect sort of Dr./patient relationship up until April of this year 2018.  But that day everything changed and it turned out to be nothing that I did wrong. He had forgotten that I take Fiorcet and it doesn’t always show up on MAPS (Michigan Automated Prescription Service – *explanation found here*: https://www.michigan.gov/lara/0,4601,7-154-72600_72603_55478—,00.html) because its such a low risk medication and not a high class either.  But whether it shows up on the MAPS is not up to me. Nor is it my fault in any way if it shows up or not, as long as he’s known from the beginning that I’ve been on it for more than 7 years.  This one particular day in April, he started being rude to me for no reason whatsoever. I went to my appointments in May, June and July.  But I was horribly anxious and very “ill” prior to each appointment, due to anxiety and PTSD symptoms.

This last visit was another horrible appointment and was possibly the final one for me. I am done being treated like a criminal or an addict! I’m tired of feeling “put down”! I’ve never smoked or drank; nor have I ever taken any drugs. I received one more short acting script and now I will be tapering myself slowly off of the short acting medication as well. It will be horrible because it’s already horrible. It will be difficult and it’s already difficult.  He lied to me in July, telling me that “in Michigan, Fentanyl patch is illegal for him to prescribe (he is a pain management Dr. and Anesthesiologist MD), unless someone has malignant cancer”. I know this is not true and he told me that “I am smart and should be able to verify this online”.  I checked Michigan law and the fentanyl patch warning on the box. It says only that it is “for chronic long term moderate to severe pain that will not be going away.” If anyone has any idea where I can find this in writing; I welcome that information.

I got a letter from my GI Dr. (*see letter below) because he felt it was dangerous to take me off of the Fentanyl patch. With Gastroparesis, SIBO and Chronic Erosive Gastritis; along with EDS type 4/vascular and more, I am not able to metabolize the long acting oral meds. Believe, me, I’ve tried many things and either was allergic, got very ill, it did not help at all or it had large valleys and spikes. The patch just worked for my pain and it was the best match for me and my multiple co-morbidities.

Yesterday’s appointment he told me that “Chronic pain does not kill anyone”. I told him that I was in my recliner now 16+ hours per day due to the pain. He responded by telling me that my cardiologist should not have put me on Clonidine. I’ve been on it since 2015, but went off of it for awhile in between. He knew this also but apparently it slipped his mind because that must be what’s making me “tired.” But in reality, it’s the pain that’s keeping me down. Also, I only get about 4 hours of sleep on a good night.

My cardiologist told me to take 1/2 of only 1mg at night. He prescribed it for me and said it would help with the physical pain & dependence withdrawals. Thank goodness someone cared enough to help me a bit!

I tried to explain that I had resigned from many activities that I was able to do with the medications. He told me that none of this has to do with the medication for pain being taken away after 14 years. He went on to say that “Susan (you’d think after 3.5 years he’d get that my name is “SUZANNE” not “Susan), you and other chronic pain patients are hostages to the pain medications”. These are the same medications that he was fine with for the 3.5 years I’ve been going to him! He also knew that my history was even longer. I’ve been taking opioids since 2005, in order to have some semblance of a life. But just for the record, I’ll let you know that I tried everything else possible fir 3 years, before resorting to the opioids.

This pain management Dr. has told me all along that he cannot make my pain go away. But he can help lessen the pain by prescribing opioids. When he made the “hostage” comment, I responded with; well “instead , now I’m a hostage to the pain”. Yesterday he told us (my husband & me), that all of his patients still tell him they have pain “with or without the pain meds”. I responded by telling him “Yes, that is true, but I had a life with the meds and I have no quality of life now. The pain medication dulled the pain without ever giving me any kind of “high”. Now the pain is much more sharp, pronounced and at the front of my thoughts. I’m not able to concentrate much or put the pain in another place at the back of my brain.”

I started to explain to him that I have several “Physicians, pain physicians and nurses that are my friends online”.  I added that this past week I was diagnosed after an echocardiogram, with “left atrium enlargement”. I’ve had a heart attack, a CVA and a TIA twice. I have Atrial fibrillation, Sick Sinus Syndrome and a pacemaker since 2003. I’ve never had CHF but that’s what this means. I told him that “chronic pain can kill and under treated chronic pain can make blood sugar and blood pressure rise”, which has been happening to me.  He became very upset with me and started to pontificate about how “each symptom needs to be treated by a Dr. who takes care of that problem.  If my blood sugar is high, I need to go to a diabetes Dr. and if my blood pressure is too high, then I need that addressed by a physician who takes care of that issue. He went on to say that “chronic long term pain does not and cannot kill you.  Only acute pain can possibly make BP and HR etc. rise.” But from Dr. Tennant’s own account in his article (Practical Pain Mgmt. By Dr Forrest Tennant MD , from another article, by Pharmacist Steve Ariens, ( Harmful Effects of Untreated Pain )  and this article that I had written last year (that was also published in Ntl. Pain Report), “Chronic pain can kill” (Untreated Chronic Pain Can Lead to Sudden Cardiac Death ), he is the one who is lying.

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