Activism: The Government Made Me Do It

Activism: The Government Made Me Do It

I have never really considered myself the activist type.

Let me rephrase that: Until the Opioid ‘Crisis’ I never considered myself the activist type.

Now, I won’t shut up.

I knew what I was going through since weaning off my meds in 2017. I didn’t think things would spiral into the depths of hell for too many in the chronic pain community. I’m not sure that anyone could have foreseen what the situation has become.

Denise Hedley

Doctors getting arrested for doing their job.

Doctors quitting practicing medicine because they don’t want to practice in a world that won’t let them really help their patients with their conditions.

Stage 4 Cancer patients being told to take a Tylenol.

The death of compassion.

Watching as the powers-that-be still find a way to point their fingers at the chronic pain community because certainly, one of us must have freely given up our meds so that the addicts would become addicted.

Pardon the double negative that there’s absolutely no recognition of the addicts that we are not.

How could I not become an activist?

I cannot find a doctor who is willing to treat my chronic pain. They are too scared.

I’m tired of being collateral damage. How could I not find my voice?

I’m still in pain. The media talk daily about the ‘Crisis’ in language that doesn’t include the chronic pain community—millions of people who have become the victims of this abominable government behavior.

My friends are suffering as well. We vaguely remember the days where we picked up our prescriptions once a month. Where we could schedule that stop into a day of running errands because – ironically – we were allowed to medicate. We were allowed to not be in horrific pain every day. We could do normal things. We were functional.

Let me say this again—We were still in pain, but we were able to function responsibly.

Now, if we even had that luxury of some degree of pain relief, we might be able to pull off a functional life.

Without our meds though?

Not so much.

Functioning in constant pain sucks. Functioning while being judged for things that we haven’t done and for being people who truly are not is even worse.

It makes me angry. But I realize that anger and frustration is healthier than letting the hatred build.

Sometimes, I feel like I don’t have the guts to keep going.

Sometimes the pain just becomes too much.

Then I find myself sitting up in pain in the middle of the night. My brain going a mile a minute. Feeling the familiar urge to write, and grateful for the distraction. Distraction is a poor substitute for what little pain relief we were able to get from our meds.

However, I feel like if I don’t write, my pain won’t just be physical any more. If I don’t at least try to be heard, then I will just be worthless collateral damage and feeling worthless isn’t okay with me. Despite everything, I feel driven to speak out.

How far will they go though, this Government of ours? Our doctors are getting arrested for prescribing because they are trying to doctor. Will they try to silence the activists next?

We only want to get the truth out there. Are they going to want to stop us too?

Hasn’t there been enough collateral damage already?

Editor’s Note—if you are doing something to try and influence local, state or federal officials, please let us know: Email the editor: edcoghlan@gmail.com

Denise Hedley was initially diagnosed with Fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis. She is a frequent and valued contributor to the National Pain Report.

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Authored by: Denise Hedley

Denise Hedley was first diagnosed with fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis.

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Glen

Molly, It will wear you out, discourage you and frighten you. At first you tell your story thinking they must listen, surely they will help. Very often I have gotten letters. “I understand and something should be done, and good luck”. After 9 years of no problems getting opiates, I had to fight since 2013. I am not exaggerating at all when I tell you I written to every Federal and State Agency. Every Veteran Organization, nation wide Churches, ALCU, Federal Inspector Generals, US Attornies General, dozen of Law Firms and I still do. I did learn this : Step back write without expectation.(but never quit) The injustice you write about ends up hurting you more the the jerks that hurt you. I have another VA TORT 95 malpractice claim in process. I have to do all this alone. People that win these things have money for an Attorney. If (and it’s a Big If) a rich and powerful Celebrity got involved it might make national news. Money alone won’t do it or the Big Drug companies would beaten the Government back. In fortunately the Media and Government has demonized them. I think that eventually something Big will happen. If hundreds of thousands of letters would help, it would have happened by now.

Glen I have written and called my legislators for only to receive form letters about the opioid crisis. More than once. It will be covered, more than just once, in my depression blog: depression2perspectiveshealth.blog. I have literature, pamphlets, and we’ll put together literature from US Pain report that I leave in every Medicine related office I am seen in, and some I’m not. But only after securing assent from practice managers.I keep doing these things while fighting constant pain. If doing these things means I’m to blame, then yes, label me guilty. Then tell me what else I can do.

Glen

Congressmen, Senators, Governors always devote a portion of their speeches to the opiate crisis. They really think they have to. They really think it is what people want. Nothing will change that reality. They are behaving like politicians. There is no evil conspiracy. You can’t fix stupid. Common sense is not a requirement for public office. It is Anerican apathy that left this thing too far. We are all to blame.

Glenda

I have had 3 fusions I hurt every minute of every day have been since 1999 I go to pain clinics in 2008 Thur 2013 they had me on 20 mg Percocet 6 times a day I could function as much as possible then moved and was hurting really bad I’m 65 yrs old and take my meds as perscribed not 2 at a time then skip one which I know people who do I’m now on Norco 10 mg 3 times a day I need something for break thru pain and the doctor can not prescribe any thing now use to I got 7 mg timed release Dilidid for break thru pain now they can give me anything for break thru pain so I hurt terribly bad for 10 hrs a day then when I take the Norco it doesn’t work well because it’s been 8 hrs it’s worn off and then it doesn’t work why we go back to every 4 hrs so I can maybe go to the farmers market to get begs or groc Store I can’t stand on concrete 10 mins or then here comes the horrific pain for 8 hrs this is redicklous they we r being punished for having pain My ref Dr left the group and now have to choose new one what’s next their door will say closed I go from North Al to Meridian Miss to this pain clinic because they do nerve burnings and no one near me does guess I need to call old pain clinic in Ga to see if they burn nerves I’m constantly breaking bones in my ribs and spine and I get the nerves burnt and it gives me some relief not total but with meds I can function a good bit better for 6 to 18 months we need to have our voices heard

Jeffrey Sharp

Denise, I HAVE personal spoke to one of my state sen. in Nebraska. I first started with sending her an Email with my story of and unfortunate Shotgun wound accident that ripped through my abdomen and exited out my back. Also, I mentioned how these terrible policies have affected not just myself but others close to me and my other pain warriors around the nation. I honestly never thought I’d even be looked at let alone read and taken seriously. Two weeks later, to my surprise my Sen. Personally called me letting me know how my story touched her heart not just as a Senator but as a Mother. To get to the point she agreed with how these policies have hurt many people and that something needs to change asap. I admit I was at a loss for words and I expressed how much that phone call meant to me. She invited me to contact her anytime and said that she’s very busy but that she would make the time to respond when she’s able. Anyway’s, I wanted to share that with our community and tell you all that it is worth writing your story and to tell your Senators how you’ve been affected. Then actually send them that story via Email or if you don’t have a device or computer, a letter sent by mail works just as well. So if you decide to do this try your best to be respectful and please don’t take your anger out on your Senator’s. You’ll get so much farther doing it that way, I promise you this. One more thing remember that these are extremely busy people so if you don’t get a response right away, I know that it’s hard to wait but, have faith and patience with them. Lastly it also wouldn’t hurt to find there number and call and let them know that you have sent them an Email/Letter and briefly tell them your story and more than likely you’re going to speak with one of her staff or you might have to leave a voicemail. Good luck and I know you all can do this.
God Bless each and every one of you all.
P.S. Email me to join forces @ jeffreysharp386@gmail.com
Sincerely, Jeffrey Sharp

Glen

Denise, A lot of people here didn’t believe the “Tylenol for terminal story”, but I do believe you. I have been as active as anyone for a very long time. It generally “back fires” because you will always be outnumbered. I probably have a hundred letters on my computer to Congressmen, Senators, and everyone I could think of. I did get one favorable action from “the Whitehouse Hotline. That will work ONCE. (And then comes the retaliation). A telephone “staffer” takes the call and follow up calls will not work. NOW…who might help and what might motivate them? I don’t care for Nancy Pelosi but……. She is smart. She backed up on the impeachment efforts. She is third in line for president as the “speaker” of the House . If she took an interest in Fred Trump, the President’s alcoholic (deceased) brother in regards to Trumps declaration of “a national health crisis”. She might look at the harm to pain patients who are not alcoholics. We have no activist power, we have no representation, we are an American Minority and regardless of opinion, we should get representation. Who else but the most powerful Democrat could get Trump’s attention?

Penny

I totally support you, Denise, and thoroughly commend you for your efforts! Indeed, all of us who live with chronic/intractable pain MUST remain – or become! – activists, if at all possible. How very well I realize that not every one of us who lives with unremitting pain each and every day is able to do this…but those of us who are – difficult and painful as it may be – have got to do our best to speak out and speak up in some way, even if only a little, as every voice, no matter how “small” counts! (Akin to casting that all important ballot!)
I am trying, as well, to pump up the volume on my ordinarily rather docile voice. When millions of us/patients with chronic pain join together in support of one another, speak up, and share our stories, I have no doubt the “powers that be” will – hopefully sooner rather than later – be compelled to take action with regard to amending the CDC’s throughly draconian “guidelines” (all too frequently mistaken for “law!”) More PMP’s, other physicians, and various other medical professionals need speak out, as well!
Bless you, Denise! Take care, and know you are not alone in this campaign for enlightenment and compassion.

Stephen Abbey

It is going on four years since the cdc started the crisis. It was only meant for new patients to be treated cautiously. NOT for long term patients to be cut back to SUFFER from pain all these years. Why is it not clear?. That CDC has admitted this more than enough!. I have been wondering how many patients have committed suicide, since 2006?. I stopped keeping up with that since it sounded to much about what I was thinking, even before the crisis started. Mainly because of some other pain than my back pain, neck pain, toe pain, hip pain, most joint pain. I have very, very chronic groin pain. I have had this pain going on 40 years!. Unbelievable I know. I have suffered that long with no diagnosis of why do I have this pain!!. After many uroligist still no relief. I have more test coming up, ( scans ) to hopefully get a diagnosis. The pain is always present but gets worse with certain activity. It causes constant pain, nervous tension, excessive worry, stomach pain, headache, anxiety, panic attact, depression, unwanted thoughts, confusion, many suicidal tendencies. I started pain meds for my back 10+ years back!. They helped all my pain alot, but as far as my groin pain it made me fill so much better from all the above symptoms!. Even though I still had some bad days like the first few days of the beginning of when all my symptoms are at there worst I would always look forward to after those few days when I felt more confident, in the way I felt. The difference was amazing. I could think without worry, less anxious. I felt like I finnally found the answer to my lifelong problem!. And I had control of my pain medicine. I could use only what I needed by breaking my pills in half during the day, and usually had a few left at the end of the month for maybe hard times when iigh need another half!. Why isn’t anyone hearing our stories?. It seems like it keeps getting more difficult rather than better!!. Why, why, why!!!. Please listen!!!.

Beth Jacobs

I am so sorry understand. Im so [edit] mad about i would like to make these people give them tylenol tell we help you!!

Jeff Shapiro

Now everyone will listen to candidates running for offices. I wonder if this chronic pain crises will be addressed. I doubt it. It seems the perspective is not from the view of chronic pain sufferers.

The doctors now have about as much compassion as a DEA. agent on a drug bust.

You know who started the DEA tricky Dick Nixon one of the worst presidents ever.

They leave you with alcohol as the only legal drug. Probably the worst drug around.

This country has changed drastically. USA is a horror story come true.

Wisconsin will become an Island.
All states around it are legalizing Marijuana. Wisconsin will hold out and not legalize it. These fascists want to jail anyone they can. They get money out of them. Catch and release like fishing. Then. they take your money.

Tina Block

I know where you are coming from. Only time will tell. The Government should not have a hand in treating patients or rather telling Doctors what to do. A Doctor goes to school to be a Doctor the Government on the other hand did not go to school to be a Doctor. My question is Why does the Government have a hand in Treating us Pain Patients? This should have never been a Government Decision. This is a Crises that others have ( Non Patients) Created for us. I have been a Pain Patient for years and I have never Abused or given away my Medications. I can bet for the most part There are a lot more people like me in this Mess. I want better pain relief. I want people to understand that just because I need pain relief does not make me a DRUG ADDICT. Get off the Soap Box Government Officials we are dying here and it is Not ok

Ted

Sorry that you are in pain, but numerous people abused their prescriptions and overused their opioids. This was compounded by drug companies incentivising prescribing opioids and some doctors over treating their patients’ pain. This built up into the critical situation we have today, where the government has stepped in to reduce this. Government is never good at solving many problems despite what certain democratic politicians may lie and claim. As a healthcare worker married to a family medicine physician, all I can say is that you are your best (and sometimes) only advocate and it’s up to you to find a healthcare provider who will work with you to get your pain to manageable levels. Ask for a referral to a PM+R or pain clinic if your current doctor can’t help and always take your medications as prescribed. Know that you will randomly be drug tested and if you aren’t truthful, they will turn you away. They can be federally prosecuted under the new rules. I hope you can find relief from your pain.

Jan G. Kramer

I agree with Greg! If anyone lived in my body for 1 week, they’d jump out a window. Cronic pain is REAL, I would not be able to walk out the door and be productive. For me, it’s not about abuse, it’s about quality of life. With the right medication and proper amounts, I’m able to almost be human.
A dozen years ago, I had life altering spine surgery. I live my life today as each day is a birthday. I take 1 day at a time, and make the most out of it. I know it’s a good day when I wake up and smell the coffee. Jan k.

Claudia

Denise..i am with you .. We have in every state Don’t PUNISH the pain on Facebook… Chicago up coming rally for all states is in October we win we loose we don’t give up we fight with Congress .. Senators ECT ECT I will find more if you go to the international site .then your state it’s sad here in CHICAGO no one partake s my self am getting worse back already had multiple surgeries neck back 23 screws .still trying to get REFERILLS for PT… I am scared to do another surgery yes these days I am suffering yesterday I decided to take a week off from my gym I am at my worst miss x rays are horrific .. Now also ARTHRITIS in back all those injections can’t have I always end up in hospital w infections .my last was APRIL 1st I was screaming on the 2nd . I am following what surgeon suggest but I can’t get a referral.. Pain is no joke but we have to stay strong and NEVER GIVE UP BLESS U I HOPE YOU LOOK AT THE SITE DONT PUNISH THE PAIN FB.. THANK YOU YES I AM AND HAVE READ IT ALL. TAKE CARE OF YOU …CLAUDIA

Gina

EXCELLENT DENISE! Thank you for being a voice for the chronic pain community! #cpps #SuicideDueToPain

Robin Smith lutz

I went through being cut off 2 wks before my left hip was to b replaced in 2018. Fortunately thru my ortho surgeon i found new doctor who with all my records restored my Vicodin. I have inoperable spinal issue, fibromyalgia, and am full of osteo arthritis. I could not walk, sleep or move witfhout my meds. It was an awful 4 weeks …2 prior to hip replacement surgery, 2 after my 6 weeks of post op percocet. My ortho had offered me more i turned him down as idn need it for my hip. Thank God I get my.monthly meds. I pray for all who dont as i.know their pain. This situation is pathetic.

Greg smith

its prohibition all over again. they start rolling out fake pain meds that turn out to be poison then there is heroin which by itself is dangerous. I’ve been in chronic pain for last 17 yrs and as the years went on pain got worse and help even worse cause evidentally the government knows more than highly educated doctors. I wish nothing more than to not rely on a pill to get through the day but sorry people not in chronic pain therapy n shots dont always fix the excruciating pain. I also agree there are alot of people out there that are being prescribed opioids that dont need them on a daily basis but are on them for years. I’m also tired of hearing from people when they find out your on pain regiment that u dont need it your doing fine well there the reason I’m doing fine cause without I’m bed ridden depressed and wondering on a daily basis if life is even worth it. it seems like noone cares anymore. also they need to stop including heroin in opioids deaths. I read an article from a New York doctor who said they claimed 10 opiodid deaths in one week 9 of which were heroin but they want to fool the public into thinking it’s the pain meds prescribed by doctors. anyways I’m tired of trying to get help and all the doctors now wanna pass the buck out of possibility of job loss or worse yet jail time. until these people opposing meds for pain relief walk a day in the shoes of someone in chronic pain. dont sleep for 4 or 5 nights cause there’s no comfort. what are they gonna do with the windfall of suicides and heroin related issues including death and the law all because we want to live as close to a normal life like the rest of u lucky people who dont have to suffer on a daily basis. God bless you God bless us

Brennda C Gibbs

I have CRPS (Complex Regional Pain Syndrome) & Rheumatoid Arthritis. The original injury was a car accident in August of 1985. Lady ran a stop sign, I ended up with a smashed ankle. After a total of 5 surgeries, 3 ankle braces, 4 rounds of physical therapy, & a Partridge in a Pear tree. I ended up with a fused ankle & a chronic pain condition. It was diagnosed as CRPS by a nurse friend. I received the family Rheumatoid Arthritis 6 years ago because, well, having only one chronic pain condition wasn’t enough. I didn’t have difficultly getting pain meds only because I can’t stomach them, even the Duragesic Patch. The only drug that works is Haagen-Das. I have a Spinal Neurostimulator. It works pretty good, but it’s reached the end of it’s life span. I have been working on getting it replaced for 8 months. It’s been a nightmare. I would rather not have this hunk of metal in my body, or a wire alongside my spinal cord. THERE ARE NOT ANY OTHER OPTIONS, IT’S EITHER PILLS OR WIRES. I WANT BETTER OPTIONS!!! Is that too much to ask?

I am very very lucky to have a monthly opiod prescription. I have arthritis in both hips(needing a hip replacement), and fibromyalgia. I’m diagnosed with chronic pain syndrome. I manage my meds carefully and I am well aware of the risk.
I, too, waken up in the middle of the night with pain. My trusted bottle of opiods is at my bedside along with a bottle of water. I can’t get out of bed without them.
I feel for everyone who is denied pain medication. The opiod crisis has gotten out of hand.

Chris Ward

I join too

Donna Jones

I have degenerative disc disease, scoliosis, lordosis, have torn both of my rotator cuffs and because of my issues with my back, my hips are out of alignment which causes problems with my knees. I take hydrocodone 10/325 1tab 4x a day (120 a month) at one point several years back I was prescribed 370 tablets of 10/325 Hydrocodone Acetaminophen a month…..WOW….a year ago a clinic change in Dr’s found me fighting while my new Dr started weening me off my meds. He was a acupuncture/homeopathic Dr who disapproved of Opioid meds. So he started taking them away yet NEVER offered acupuncture as an alternative to my meds. As soon as he started taking them away, I started complaining. He managed to take me from 4 doses a day to 2 , and I could barely function. Fast forward month’s later I managed to get 1 dose back and then the other. It took months , changing Dr’s ( within the clinic), and threatening reports to my insurance and the medical board to get it done but I did it . So it can be done if you’re really persistent and a little hard headed lol.

Shirley Siegfried

I also have no pain relief with RA Achylosing spondylitis osteo’s Si joint ect what torture it is being denied medication to help ease the pain once I stop moving that’s it tire disgusted FEDUP with this hell

Loyal P Kuhn

Chronic pain is real. I get tired repeating something simple: I have chronic pain that at times makes me nauseous and curled up in a ball with a feeling like a fire is lit inside my back and neck. There are days where I can’t get out of bed before 11:00. I am not drug seeking, nor am I an addict. All I want is to be functional. I don’t even have to be pain free, just functional. Why are chronic pain patients being treated like addicts or drug dealers? The facts are obvious – America has a Heroin and illicit Fentanyl problem, not an opioid epidemic.

Janet Bolton CHC

I deal with Fibromyalgia, Degenerative Disc Disease and Chronic Pain. I had major back surgery where titanium rods and screws were installed down the length of my spine to correct Scoliosis. The upside is I regained 2½” of my height.
After taking opioid pills for several years I was talked into adding Fentanyl patches. My “doctor” continued to increase their strength when they became less effective while still prescribing opioid pills.
I switched to a new pain clinic. During one visit I was told the FDA was advising physicians prescribing opioids to wean their Fentanyl patients down to the lowest available dose due to all the deaths from it. We did this gradually. Although my pain level did spike at first, after a few days I was feeling much better without the Fentanyl side effects. I weaned myself off the last patch. My doctor did increase my opioid tablets
Then I read GRAIN BRAIN, by Dr David Perlmutter, a book about how leaky gut syndrome can cause other issues in the body. It recommended what we now call a Keto Diet. I decided to give it a try. Within a couple weeks I felt great! So much less pain, super energy, feeling stress free and in love with life. As is common with folks on a diet, after a few more weeks I CHEATED! What a Big Mistake. The pain came back with a vengeance! I was tired and depressed. I learned I am gluten intolerant. Sugar rob’s my energy. Dairy constipates me.
This experience led me on a journey to learn what foods make me feel GOOD. I have totally revamped what I eat.
After going off Fentanyl I was given 8 pain pills a day. As my pain gets better I have gradually reduced this to 4 a day just by only taking them when needed.
I spent this last year studying to be a Health Coach to help others with Chronic Pain, learning more drug free ways to improve health issues.
I encourage anyone with pain and opioid issues to explore other modalities of pain relief. Find out what works/doesn’t work for your body.
YOU CAN TAKE YOUR LIFE BACK!

Jeanne Kaake

I do all that I can. Stuck suffering with severe intractable pain since surgery 15 months ago I can’t even talk on the phone more than 5 minutes. It has also affected my brain. I did go to one rally and I communicate information to as many people as possible through social media including legislators.

Pamela Weber

Denise struck a chord with me. Hi, my name is Pam Weber. I was diagnosed with fibromyalgia after a traumatic spinal injury that correlated with a severe case of Mono, EBV, and CMV. Possibly the trigger of onset.
I’ve navigated the pain management community since the 1980s. I’ve had more needles in my back and neck that I can count. One that included 25 trigger point injections in one sitting.
This past year has been a nightmare. After declining more injections that gave me no relief, pain management decided they would not write for my pain pills.
I’ve gone through opiate withdrawal twice now as a result.
Finally I was referred to a physician who reviewed my scans, allowed that I was infact not going to be a candidate for the newest bupropinephrine therapy and would most likely be on some form of pain meds forever.
It took six months to get there. I’m one of the lucky ones. Did I mention I’m an disabled beat up old nurse?
I started my trek in nursing in the 70’s. We called it a “healing art” back then. Doctors were allowed to TREAT with caring. Before the insurance industry decided what could be allowed.
Then big Pharma kicks in and prices have skyrocketed. The two industries had been joined by government backing and taken the “personal touch” out of healthcare.
I really don’t think that personal patient care will return until the big three take their noses out of their dollar schemes and allow for those trained in healthcare to deliver it.
Just my rant. God bless and watch over all involved. A special prayer to those who also suffer and face the growing stigma of suffering and denial of proper care.

Ames

I’ve been in pain management for years – an option I opted for as opposed to surgery at 27. I’ve been through all of the tests: MRI, X-ray, ultrasound, the extremely painful Discogram, etc. Have had countless procedures: RFAs, epidurals, trigger points, etc. Tried acupuncture, massage therapy, chiropractic, Pilates, etc. I EVEN HAVE A SCS (spinal cord stimulator) implant!!! (Which btw hasn’t helped so don’t waste your time, go through the painful recovery, and risk unpleasant sensations that I suspect are due to lead breakage and may require corrective surgery). My conditions resulted in my disability – in my 30s!!

When I moved to TN, I was no longer able to get my specific opioid prescribed. My conditions were DOWNPLAYED to discredit my NEED for it. “It’s not ‘that’ herniated”…”you have ‘mild’…”degeneration and arthritis occurs as you get older”…nevermind the congenital defects that are present but were glazed over.

The only thing that made my life more functional was that opioid that I can no longer get prescribed (in combination with some of the treatments above). I was supplemented with a low dose narcotic, which I’m THANKFUL for, but it in no way provides me with the relief I was accustomed. I feel like Tylenol 3 is tic-tac’s for chronic pain patients.

Deb

Thank You for speaking out and advocating for chronic pain sufferers….I have used opioids for over 20 years…no issues. However, periodically I am subjected to injections, burning/lasering of nerves…doesn’t work!! I am tired of the worry every month..wondering if my prescription will be filled. I have been tapered down to half of what I used to take. It’s very difficult to push myself every day to care for my mentally disabled daughter..and just get through life..gvt needs to go after the majority of overdose cases…street drugs or those mixing other drugs and alcohol with opioids. Stop the madness

jeffrey ulrich

Am starting a class action against the CDC regarding their willfull and deliberate criminal acts towards patients and doctors revolving around the so called opiate crisis. Am in search of one hundred sufferers of CDC heavy handed Gestapo tactics.
Make them pay and your voice be heard. My email is Julrich472@gmail.com contact me tell me your story.

Jeff Elton

“I knew what I was going through since weaning off my meds in 2017. I didn’t think things would spiral into the depths of hell for too many in the chronic pain community. I’m not sure that anyone could have foreseen what the situation has become.” I saw it coming Denise. In the early 90’s I was detoxing from a heroin addiction and was prescribed methadone 100mg per day. I soon detoxed off of methadone, too. This showed me what was coming to America. At age 66 I now use cannabis, which I started smoking in 1971 at age 18. It’s safe and effective. Thank you for your work.

Lisa D

I hate to say it about myself but sometimes the anger keeps me going .In 2016 I became ill I went through Pt injections then finally I agreed to ACDF surgery of my C spine .When looking back all I needed was pain relief .I had the surgery because my left arm pain.Since the surgery I have been diagnosed with small fiber neuropathy .It actually started 8 years ago but I was misdiagnosed .I have nuerforminal stenosis of c spine and lumbar spine with radiculopathy .The surgery caused me constant pain with a frozen shoulder I also have occipitucal neuralgia Left side of my head and know it is effecting my right side .I am having injections in a month . ThenI had an ultra sound 3 weeks ago and the found a growth inside of my bladder .I Am actually praying it cancer so I can get pain treatment .I have found a way after 2 year in bed unable to dress and I would shower weekly. I can’t believe I live in a country that can legally tourcher It citizens.The anger is the only thing That helps at time. This is beyond anything I could imagine and the medical field just keeps doing nothing .Were are the Doctors ?

Dorothy Clay

Oh yes I know all about chronic pain I have it every single day of my life and I think it is so outrageous that doctors cannot give you anything to help you. I wonder sometimes if this life is it even worth living. Going through all this pain for the rest of my life does not look too inviting to me

Hayden Hamby Jr.

Well said Denise!
YES dot/gov IS trying to silence the pain management community. Take a “Tylenol” Jeff said. We don’t have much more to lose than advocating for those of us that have “used as directed”. WHO will show up, unexpectedly on “your” doorstep to silence you as an advocate for an irresponsible “policy”, a “guideline”. DON”T be surprised! I am already on a “watch list” I am sure but, for myself, my family, and MILLIONS of fellow Americans, pain management patients, would we be justified in being silenced? I don’t think so. IF you have no convictions and no love for your fellow pain management patients then yes, be silent. Otherwise, we have “not got” much more to lose!

Janelle Dalstra

I don’t know what State you live in but my state Democratic Representative Racheal Hood just called me Saturday and stated, that the government did not write those regs for chronic pain patients! That a new government organization called LARA, will investigate and defend anyone that can’t get pain medication for chronic pain. I’ve Google it, looking for a internet site that defends our rights, as I was told on the phone, so I could print it and use it as a defense for my Pain Clinic apt this August. But I’m yet to find this list of questions and answers explaining it. This government organization called LARA, does state you can turn a medical field person into them, if they will not care for your needs and treat you with the necessary medication to treat pain for a chronic pain relief. They will investigate them and discipline them if they have denied you treatment. Currently I’m waiting for a return call from this State Rep to explain again the site that defends this. The intention of this paragraph is a heads up, I think things are going to change! It may take awhile for the nation to hear, but they are listening.

Patricia Haynes

I’ve spoken to, written, and emailed a number of so called people’s representatives in government and local medical communities and have been ignored. I’ve been blacklisted now and can’t get a prescription filled for such things as migraine medications that aren’t even opioids. Because I opened my mouth and attempted to speak out, I can barely get an appointment with some of the people I called doctor. I’m put off for months. The government personnel receive a completely different type of health care than we non-government folks. Since most of the elected officials have been in their positions forever, they do not suffer from the same biases and discrimination we do. Their doctors do not refuse them anything. I’d bet most anything that if they are in pain, they get pain medications. No one has asked their doctors about the government employees usage or their families. How about asking the governments health care to account for their behavior? What about the lobbyists behavior in this “crisis”? I can discuss my pain forever as it rules my entire life, but it’s time to take this situation to those that are being treated behind our backs. If they are being treated and we’re not, why are we still voting for these people? We can’t change those that aren’t being affected by our situation so we need to change whom we elect. Keep in mind Obama started this opioid crisis. Look it up, it’s public record.

I’m one sick with chronic arthritis and depression and more so I can relate

James McCay

Very well said Denise. You asked a question- I hope I answer it.

So after being a Severe Chronic Pain advocate & patient (Advanced Myasthenia Gravis w/Hyperthymusism- blocks ALL meds from working!, Degenerative Disc Disease- 6-discs all with nerve damage, and Fibromyalgia to top it off. That’s two Autoimmune Diseases & three Neuromuscular Diseases. Everything is inoperable & NO physical therapy thanks to Myasthenia Gravis.

As much as I’ve tried to be a voice in the “War On Opioids” started in 2011 (you read that correctly, NOT 2016!) in NYC. The government has only MADE EVERYTHING WORSE & will continue to do so!

The Democrats that RUN NYC (ALWAYS HAVE), don’t even have Opioids in the Top (100) things to do. #1-95 is impeaching Donald Trump (the STUPIDEST THING IN THE HISTORY OF POLITICS). I was a lifelong Democrat in ideals until all Democrats WENT INSANE!

Just like all Pain Management doctors went INSANE, significantly lowering or cutting-off opioids due to DEA scary Letters from the 2016 CDC Guidelines (NOT rules or laws).

The CDC have done nothing that I can see that has stopped the availability of Fentanyl & Oxycontin on the street level so DUMB KIDS can smoke these drugs to only get high, WHY? So the reason for the “War On Opioids” & the “Opioid Crisis” hasn’t really started yet has it?

Gov. Cuomo (our moron leader) had a bill approved in April, 2019 that makes all importers, warehousers, and suppliers of Opioids to pay a HIGH Excise Tax on all the Opioids they store & sell. I’ve heard this tax is 30%+ from a reliable source. All this will cause is these drug suppliers to LEAVE NY STATE.

Cuomo couldn’t care less BECAUSE HE’S NOT IN CONSTANT EXCRUCIATING 24/7 PAIN LIKE I AM (even with opioids)! Nor is anyone close to him. So he has no clue what he is causing!
His reason for this Excise Tax: “To lower the amount drug suppliers charge pharmacies.”. IS HE REALLY THAT STUPID? Must be, because that’s NOT what is happening!

Arleen M Krebs

This could have been written by my 36 yr old grandaughter……..she is in constant pain and unable to live her life as the young vibrant and intelligent person that she is………thank you for fighting for her…..

Brett H

The Government doesnt care about anything other than money and their lobby. Trust me. They did this to prop up Medicare. We paid into Medicare for years and instead of growimg that money it was probably raided. Their insurance lobby keep over charging. If you look at the 90 milligram Morphine Equivilent chart it has nothing to do with addiction it has everything to do with saving Money. Doctors cannot prescribe even an appropriate amount of Bupenophrine. They wanted to funnel us through addiction facilities I am sure are owned by more people connected to Congress. Also they want us to pay cash for our pain meds. The second they could deny us, letters from the Insurances started flying. They kept dinging my doctor for me having One 10 milligram Methadone and 4 short term oxy. Now I’m forced to 3.5 so I have one day with 4 and one day with 3. Evangelicals think we deserve our pain for things we have done in life. I have been cursed since I was 8 years old. Addicts get more medication than we do for pain, but they pay cash mostly. This Hell on earth is forced upon us by others. Addicts will use anything to get high. People in pain will use just enough medication to blunt the pain. I have stopped my meds to start others and I can say the Government is full of cruel people who treat us like cows for slaughtering. Once We retire or end up on the lower end of the taxpayers barely sendimg the Government money we are ignored and maligned.

Nerve ablation did NOTHING for my back pain! Oh, but it certainly benefitted the physician’s wallet. I’ve got so many Medical bills that I’ll never be able to pay them. Get a job? I would love to! Chronic pain has created a physical and emotional pit with no end in sight. I heard on the news that my senator Johnny isakson was released from the hospital after suffering 4 broken ribs do you think he had any difficulties getting pain medicine for his condition?
I had to argue for and justify every single measly 5 mg pain pill I got after emergency exploratory surgery, which left a footlong scar on my abdomen and 18 to 20 staples.

Christie Shuman

Hi, I too suffer from fibromyalgia and other chronic pain problems. I would love to be an advocate to speak against our government. I am having the same problem getting pain meds prescribed. Please let me know where to start. Thanks

Cyndi Sieving

I’m in chronic pain without any type of pain relief and it’s been over a year now. The only thing that’s happened to me is, I’ve got an ulcer and something seriously wrong with my bowels/colon from over use of Tylenol and ibuprofen. I’ve gained weight due to lack of any type of exercise and I’m situationally depressed and filled with anxiety. I’d like to know what benefits I’ve gotten out of the complete cessation of pain medication. My blood pressure was always very good and even on the low side and is now high too. I’m being ignored and turned away from all Pain Management Physicians now because my one nerve obligation went horribly wrong and I didn’t want the other side done so, I was told I wasn’t following their treatment plan! So I was supposed to continue with painful procedures that did permanent damage that caused even more pain instead of standing up for myself and saving myself from injury and more pain. It’s just excuses to ignore CRPP & refuse help to us. Something has to change!

Jesse

Thank you Denise. I also have found my voice. I get tired of crawling around on all fours A failed back surgery accompanied by a stroke where the lower part of my fusion is pressing hard on a nerve causing severe sciatica and severe stenosis of the lower back and they are wanting to do more surgery which will lead to more pain after the initial pain meds are gone. It’s not worth it and angers me more that the doctors won’t prescribe pain meds knowing I suffer for fear they lose their licensee has promoted me to write some letters.
Jesse

👏👏👏
Very well said.

Debbie Nickels Heck, MD

I understand from both sides far too well. I’ve written to legislators. I’ve had Drs dismiss me because I was “uncooperative” when I’d been diagnosed by a specialist the Dr sent me to that pain was the cause of my hypertension and that he says she asks treat it to get my blood pressure under control. THAT’S being “uncooperative”? Then the Dr I found to treat me who completely agreed with me is no longer able to have my scripts filled at multiple pharmacies for reasons I’m yet to understand. I’ve found a place to fill them but at the last minute before making a needed trip out of state for a family need. Young Drs aren’t being trained to even treat pain but to be suspicious of anyone “claiming” to be in pain, even after surgery or with obvious injuries or arthritic nodules that impair their movement. This is beyond ridiculous! Don’t legislators suffer from what we do? How can THEY have enacted such ridiculous restrictions when they are NOT practicing physicians? That’s illegal in my mind and the minds of other chronic pain patients and physicians who EARNED the right to prescribe medications properly!