Don’t Punish Pain Rallies Held Across the Country—Also A Win In Oklahoma

Don’t Punish Pain Rallies Held Across the Country—Also A Win In Oklahoma

Another series of Don’t Punish Pain Rallies were held across the country on Wednesday (May 22nd). The idea has been to draw attention—particularly media attention—to the impact of the opioid controversy on chronic pain patients and others who use opioid medication responsibly.

It is a new civil-rights issue,” said Claudia Merandi of Rhode Island who started the DPPR movement. “When you take away a person’s right to live a humane life, what else would it be?”

On Wednesday over 40 rallies were held—and many local media covered them.

This is the latest evidence that the media are starting to tell the opioid story more frequently from the chronic pain patient point of view—a trend that has been aided by federal government agencies, notably the Centers for Disease Control, and others including the American Medical Association declaring that the “Opioid Crackdown” was hurting chronic pain patients.

Merandi quoted a doctor from Pennsylvania who told her recently, “When the government practices medicine, bad things happen.”

In other news, in Oklahoma, pain patients are celebrating the signing of Senate Bill 848 this week, which is a patient’s bill of rights which civil rights attorney Kate Nicholson says “reversing some of the most egregious one-size-fits-all policies on prescribing.

It’s a reminder that the action for change needs to happen at the state level.

As one pain leader said recently, “There’s not really a national pain policy, there are fifty state policies that must be influenced meaning that legislators, medical boards and Attorneys General are the one who must see the light.”

The National Pain Report has been devoting some coverage to the importance of local and state advocacy. Just this week, Mary Cremer of Missouri recounted how she and other chronic pain patients have organized to get their point across. (Read here)

Also, there are times where national leaders can help the local advocacy efforts as witnessed in Oregon where local and national pressure caused the Oregon Health Authority to roll back mandatory tapering guidelines on back and neck pain. (Read here)

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Authored by: Ed Coghlan

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Rhonda Perry

I have an amazing testimony! I’ve been through it all! 13 yrs on Fentanyl and Percocet, had a quality life. I was never tapered. The fentanyl was stopped abruptly and replaced with Butrans, which did nothing. I’ve been verbally abused and told not to come back by rude pain management doctors that tried to label me as a drug addict. I never abused my medication. I have a spinal cord injury. I’m going to be disabled for the rest of my life and now I’m in excruciating pain. My last pain management doctor said that someone from the local hospital in the town where I live told him I said something that I didn’t say. That’s why he told me not to come back. Childish and immature nonsense! Have been off of Narcotics now since December 2018. That’s just a little bit of my story. I had five by passes in 2016 that really slowed me down.. I’m not a drug addict! I don’t like any kind of euphoric feeling. I had to choose between pain medication and anxiety medication. My life has been such a crazy mixed up mess because of these doctors! I want to help myself and others! We are not criminals and we don’t deserve to be treated disrespectfully and accused of being criminals and drug addicts!

shauna islas

Would like for you to contact me,red don’t punish our pain,have something I’d like to discuss and show you

Gina

Don’t Punish Pain Rally members will be attending the CDC Rally in Atlanta Georgia on 6/21/2019, along with several other pain advocacy groups. If you would like more information please visit the website https://dontpunishpainrally.com

Chris Mathews on MSNBC continues to spread inaccurate opinions & statistics on his show & when interviewing democratic candidates. Last week he used outrageously inflated percentages in regards to the number of youths that begin because of prescriptions as well as distorting & greatly exaggerating the % of total drug use & overdoses he arbitrarily attributed to prescriptions. I agree with Mathews on a number of topics but he as well as most hosts on all channels; periodicals; radio hosts & newspapers are usually wrong.

Kat Koe

For those interested in the Don’t Punish Pain rally’s in your state, contact the Don’t Punish Pain facebook group. https://www.facebook.com/groups/DontPunishPainRally/?ref=share

Voakley

I’m looking intensely for a group, or to create a group of us in Florida. People here want to do something but won’t. I’m having a hard time finding Floridians that will participate. We will be stuck in this vicious cycle of pain untill our 40 somethings are past. While we’re still here knowing that this will affect our grandchildren, it seems to reason people down here should RISE UP.

Wow, what an amazing month! Between the CDC and FDA “clarifications of sorts”, and the much anticipated Final Report from the HHS Pain Management Task Force, the pendulum is slowly beginning to swing back in the direction of common sense. It’s unfortunate that these revelations have come along a bit late for far too many of us that have lost so much over the last 3 grueling years. It’s also unfortunate that many in our community are in the “I won’t believe it until I see it for myself” phase which greatly hinders our collective efforts.

But I encourage everyone to PLEASE take that anger and frustration and use it to fuel the power of YOUR voice! Yes, YOUR voice DOES matter, and now we have PROOF that we CAN change the narrative and turn this injustice around in our favor. All it takes is a handful of people to make a huge difference for thousands if not millions of our brothers and sisters in pain. C-50’s Tamera Stewart, Kari Kruska and Mark Reese proved it in Oklahoma, Mary Creamer proved it in Missouri, Dr. Schactman and HP3 proved it, etc. So, the snowball effect has begun….now it’s up to the REST OF US to PROVE it!

So pick up that phone, make an appointment to meet your State and Federal Representatives. Start attending Town Hall Meetings & campaign Events. There are many ways to get around the physical obstacles we face. I’m willing to help! If you need advice, or the tools you’ll need, whatever it takes…one state at a time.

You CAN do this….WE CAN DO THIS!

Blessings to all,
Andrea Patti
Pain Patient and Advocate
War on Pain Patients
PainWarriorsUnite.com

James Robert De caro

JPMorgan Chase Bank cutting off ties with with Purdue Pharmaceuticals so they don’t make any Oxycontin time to close any accounts that you have with Chase Bank, many pain patients out there maybe who have accounts with Chase Bank show them we don’t want to be tied to them either since they don’t give a damn about people in pain either in acting like little children which is probably what these senile imbeciles are comprised of they are all about stupidalong with the politicians and cdc

Billie McCurdy

I wish they could do a rally here in Texas. They may have I just have not heard about it. With reducing my medicine by 75% it’s hard to even get out of the house to go to the doctor much less a rally. When I was at the dose to where I could function I would be up there fighting for the rights of pain patients. Why do we have to taper off ? It’s not the government’s right to tell us what we can and cannot do. I know there’s a opioid crisis but it has nothing to do with pain patients. I know the pain medication will slowly damage my body but at least I could function and enjoy life with my son grandchildren and family. Now I’ve missed so many of my grandchildren events and I’m not able to play with my first great granddaughter. I would love to get on the floor and play are to be able to hold her in my arms for a long. Of time without someone having to sit next to me just in case my arms give out. I never know when the nerves in my neck or going to get caught if I turn the wrong way there’s so much rheumatoid growth around my C2 to C8 and my neck is curving in the wrong direction. Surgeon won’t even fix it it’s too risky. I don’t want to be paralyzed. On top of the other diseases I don’t understand it should be the doctor’s decision not the government. Now they can watch over the doctors to make sure they’re not doing anything illegal but leave the pain patients alone.

Bonnie Bell

I just recieved a notice that my insurance denied my tramadol prescription because I sometimes use oxcodone for break thru pain ! I have been on this regime for about 20 years without a problem . I can only guess its because of the Opoid Epidemic ” that my script is the cause of . I do feel like this is an invasion of my privacy and my doctor will not back me up ,he has been hounding me since he took me on as a patient the last 5 years.
Its harassment pure and simple . Just another way to make my bearly tolerable life worse ! Thanks universe . I am too tired to fight it .

Rebecca Hollingsworth

Small but very important victories!! It takes a village…Hats off to everyone who has made their voices heard. Our message is being recognized as important and legitimate. My US Senator is holding another town hall meeting which my husband and I will try and attend. Unfortunately my medication has been so severely reduced that my pain is constant, 24/7. Keep up the fight all! We are winning our rights and lives back!

Jody Hoffman

We need to focus on doing this at a national level not a state level. It was started by the federal government not a state government. What we are going to have is 50 different laws in 50 different states and that will leave us open to this happening all over again.

James Robert De caro

Rise up angry now!

Terry

To any attorney reading this. Would I be able to sue my pain management doctor for abuse and/or negligence for cutting my life giving pain meds from 195 mgs of oxycodone daily to 60 mgs of oxycodone daily? My life has been ruined. I spent the last ten years on the 195 mgs dose and there was nothing I couldn’t do, now I hAve such horrible widespread pain I can hardly do anything. My quality of life is gone. Also, I thought the CDC guidelines were just that, guidelines. I thought the pain doctor could make exceptions for certain patients. The DEA has been taking away their licenses and that is so wrong. I wish I could sue someone, then I could use the money to buy pain meds on the street, from some drug dealer. I’m 60 years old and I can’t believe the things that go through my mind. It sucks hurting 24 hours per day. God bless you all.

Mark Reese

There has apparently been some confusion, DPP didn’t get the Legislation passed, it was the C50 Oklahoma Pain Advocacy Group.

Rosalind Rivera

Kudos to Oklahoma change in OPIOD change by those that fought for it! This gives the rest of us or at the very least hope and motivation to fight back our through contacting our state representatives. I live in a very small and isolated community and there is not very much contact between residents of this small town making it somewhat difficult to get even the very few residents together to form some kind of an alliance. I will begin by making signs calling for a meeting of all residents and particularly those that live and suffer with pain each and every day of my last fe, particularly chronic pain as I have. I will encourage everyone to begin calling our state senator as well as others in power that can bring about humane changes in our now stagnate system

Rosalind Rivera
Lucerne Valley, Ca.

SHEILA GAIL GOMEZ

You know it’s a damn dirty shame that since 1979 I have got a lot of medical problems and when you get out of the military these doctors on the outside just don’t want to help you some do some don’t you got to go to a pain doctor to get what you need and then they make the decisions who are they to make the decisions of what you need and what you don’t need I have been through hell and back and I can’t even get my medicine for my migraines are possibly for my Meniere’s because they are narcotics but when you use them like you’re supposed to which I do but when you use them like you’re supposed to which I do I do not take more than I am supposed to I always follow the guidelines of what the doctors tell me I’ve been doing it ever since 1979 and now because of all this s*** that’s going on I’m having a lot of trouble getting my medications yes they say it has to do with your age that’s baloney and I don’t believe a word they said I went to a neurologist yesterday for my migraine medicine you know what they’re going to do give me medication for seizures now what the hell do you call that I’m just about ready to sell my house and move next to an Air Force Base so I can get my medication that I have my records and what not but what do you do when the patient gets out of a service and I’m a spouse I have no rights to go to the VA so what am I supposed to do you have an answer you let me know thank you God bless you and may God be with you always sincerely Sheila G Gomez

Amy Lewis

I live in PA. Like many other chronic pain patients I have been affected by the legislation, CDC and FDA. As the changes have happened My doctor has been super supportive by documenting my condition and won approval for my medications!
On the other hand I’ve been traveling to VA since 2015 to help my mother. I used to be able to fill my prescriptions there provided they met their rules. I always went to the same pharmacy. The last 2 times they refused to fill my prescriptions because my dose was higher than the recommended. We need a standard law across the country so that people can travel freely without worrying about whether or not they can get their medicine.