My Story: Advocacy Works, if YOU Work It!

My Story: Advocacy Works, if YOU Work It!

I am from the great state of Missouri. We are the only state without a statewide PDMP (prescription drug monitoring program). We have county PDMP’s that were set up from our previous Governor from an Executive Order. Our state still has problems.

Bills were proposed again for a statewide PDMP, this last session. The House bill did pass in the House. It was spoke about in the Senate, but was filibustered. My email was even read during a filibuster session. Chronic pain patients are being acknowledged. Then the Senate moved onto other business and the session ended. Once again, no statewide PDMP.

Advocacy is so important. We all need to remember that elected officials are the ones that create laws and change them. In order to make changes, we ALL need to be contacting elected officials. And, if we all spent time doing this, we could have our voices heard. There are 100 million of us.

Mary Cremer

I wanted to share with you about how I advocate. When I started to speak out, I had a clear vision of fighting for myself, my family, my friends and all current and future pain patients and all doctors. The elected officials make the laws, but the doctors write our prescriptions. Pain patients need elected officials and doctors to be educated on pain patients’ strife.

I decided to contact a local newspaper that ran an article about the pain patient’s side. News media can be effective.

I also wrote an email about my journey as a pain patient. I sent it to all 163 state representatives and just signed my name and cell phone number. I received calls and set up appointments with representatives. I emailed all representatives multiple times and called. I also emailed and called all 34 senators, many times. I emailed other state and federal elected officials and department heads. I did a lot of research and made a lot of contacts. I met some wonderful elected officials that fought hard for us. But some offices said to me that they were waiting for pain patients to contact them. I thought to myself, what is everyone doing? Where were all the other pain patients? But, if had I only contacted my state representative and my state senator, I would be nowhere. Contact them ALL!

Most of the proactive contacts I made were from my recliner. I also work, so I am making contacts in my time off. So, I think we could all be a part of the solution. I think it’s important to assume every elected official can help us, so we need to be open to them all. Don’t let your political views cloud your advocacy. This problem crosses party lines.

Sharing a post and a tweet, doesn’t make contacts to elected officials. It’s good to let others know what is going on in the community and with legislation, but it’s not getting in the hands of decision makers. We must do both.

I also met other great pain patients that also contacted elected officials and worked hard too. Then there were citizens fighting for the constitutionality of collection of data by the PDMP. Their presence is great. Pain patients should look for groups like this and find a way to work together. But we must work. Keep in mind that elected officials make changes. This last session brought in many new representatives. These are new people to educate to what is happening to us.

By all means, what happened in our state, by not having a statewide PDMP, was not a “win” or a “save” by any one person. Elected officials have been suppressing the PDMP in our state for over a decade. But chronic pain patients were passionately discussed on the House and Senate floor. To me, that was a “win” by only a few pain patients that have been working tremendously hard. And, I am so proud of the elected officials that listened to us and fought for us. One elected official, Representative Mike Moon, has helped so much.

Please get involved. Educate yourself. Please know your story, emails and phone calls all matter. Look for town hall meetings and attend. Visit your state Capitol and visit with all offices. Share your story and ask for help. It works, if you work it.

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Authored by: Mary Cremer

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Laurie

I’ve been fighting chronic pain half my life with Docs not knowing anything about my condition and me having to educate them. I did this when there was no internet, only periodicals which informed me of advances in care and research.
I wrote articles to help people after a nerve surgery in Jacksonville cut out the worst muscles in spasm. It was two surgeries amounting to 10 hours.
You wouldn’t BELIEVE what was prescribed to me: poison
Finally, I got doctors to take me seriously, but after the surgery I LOOKED OK, so then, they thought i was alright, I’m not by a long shot.
But I’m so tired of “fighting” and now having a throughly arrogant, ignorant doctor who just kicked me into medical homelessness…pain management. Yeah, right.
I am now nearly 70 and can barely move.
The only thing that MAY work is a old draft I found on my email about the Drug Taskforce in my state.
I will be calling them today. Maybe they can help ,me at least find a doctor who know how to inject the Botox I need and LISTEN to me about pain meds

I can’t do all the things you’ve done, I wish I could.
I don’t even have a cat anymore because I can hardly feed and take care of myself + I got sick of watching them die so vets could make money.
I’m heartbroken, alone and in constant anxiety.
And, every once in awhile I lose my temper, usually at the exact moment I shouldn’t.
30 years of this and this scam on pain patients because it;’s just so easy.
GAD!

Tonya

Im in so much PAIN right now I want to scream!!! My stomach is killing me so bad along with my back and neck. They’ve taken me off my pain meds and told me to seek pain management 2 hours away! Why!!!! I don’t understand why! Im no abuser!! I HATE THIS! My life sucks!!! I’ve thought of suicide so much from the pain. I’ve even went as far as to cut on my leg. I hate this town!! Everyone looks at you like your a abuser or your shopping for pain meds, IM NOT!!! So sick of being treated like I did something wrong when all the while I screaming help me with my pain, give me something!!!! Having cancer sucks! Please someone change this policy and help me!!! Im literally going insane with this constant PAIN!!!😭😭😭😭😤😭😭😭😭😭

Thank you again Mary Cremer for the hard work and valuable information.

Katrina Bergman

And i will never walk again all because they just don’t care about our pain but my mind can’t go through it again( i do not fear death!

Jessica

Great job!! Thank you for speaking out for all chronic pain patients and thank you to Mike Moon!
Congrats!!

davidkenberg kenberg

Job well done. Thankyou for fighting for all of us who suffer. I have been trying to do the same for 17 years now of suffering the wrath of full-body Rsd/Crps and multiple spine injuries that are very serious in nature.I was in a car accident in 2000 with a driver on his cell phone and pulled out right in front of me and my daughter who was 7 at the time.I was out of it for a few seconds and when I came to I heard my daughter screaming and we were hit 2 times in the same accident.I looked out my drivers side window to see a pissed off officer who grabbed the guy who hit us away from my drivers side window as he was yelling at me and still had his phone in his hand.I can hear the officer say what the hell are you crazy to him.They were yelling at him.I had no recollection of what really happened until the officers told me.I cant explain what I felt go through my entire body from my head to my toes.It was like a power surge if you know what I mean.I say my circuit breaker went off. I had a severe bruise from my chin to my chest and i didnt feel right.My daughter has a small injury but shes ok. I however am not. Im fighting to live with this horrific disease.I have all kinds of hardware and 2 stimulators for upper and lower body take very little meds and none are narcotics or opioids and there trying to take my meds away.I burn from head to toe including my brain,eyes,nose,mouth,throat,through out my entire skeleton and severe pain through out my body and they dont give a [edit] if we live or die. I wrote and called everyone I could and it still dont matter. Im suffering severely and they dont care they rather me be dead then help. I can even begin to tell you the hell they put me through over the years and here Im thinking finally after 17 years of hell we have what is keeping me up right and been doing tons of research and advocating for others who suffer like me.A small part of my story was in a magazine and has helped others.This has to stop.We deserve to live!!!!!

Sara Bryce

Congratulations Mary! You have done an awesome job and your state is the last and only state to not have that despicable PDMP. You are all very lucky! That system was never about stopping diversion or doctor shopping but rather a way for the Federal Government to start surveillance on all of us! And the surveillance has only gotten worse and worse as the governments thirst for mining our data continues unabated. Someone asked about those HIPPA laws well they are basically meaningless as no one enforces them. Just in case they might be one day enforceable Congress has been busy re-writing the Common Rule behind our backs, which is the backbone to the ethics code in this country. After they have done this they have also been busy making themselves and every single stakeholder who is in bed with them exempt from rules of ethics concerning human research. The people who are now allowed to see our health information is mind blowing! Take a look one day if you dare, but brace yourself for a shock. Our rights are being destroyed in this country at an alarming rate while everyone has been busy looking at this non existent opioid crisis.

But I digress, I just read all the comments below and honestly I have tears in my eyes, it is heartbreaking to see how many souls and lives have been shattered by our Gov. This entire crisis was built on a foundation of lies and they all knew it! To hear that they were waiting for the CPPs to show up otherwise they would do nothing I find to be reprehensible! I wrote to my representatives, one of whom is an MD. I heard….crickets from them! Some may get their meds back but for reasons I do not feel free to discuss here I do not believe it will last for long. This opioid crisis has been one very large distraction so we would not pay attention to what Congress has been doing with its “other” hand. I apologize for my jaded view but I have learned too much.

Any Won

Today many people across the nation spoke out against the current policies and the people responsible during the Don’t Punish Pain Rally demonstration. I joined with them speaking out and informing others at one state capitol. These fellow sufferers of pain soldiered on through the entire two hours at the steps with their wheel chairs, scooters, crutches, and canes doing their best to be heard and seen especially for those that couldn’t be there. It was very inspiring. There were some news stations taking note and reporting on some of these demonstrations. There is supposed to be a CDC Rally as well on the 23rd so hopefully these things will help. I know it’s long shot but we need keep doing more like Mary says while we still can.

Marie Foehl

Thank you for all you have done and information, very helpful!

Cheryl Johnson

I am surprised that your state does not have one! I live in MA, one of the toughest state’s! We had one about 10 plus years before Florida and noticed that they had a major problem. I know some people who have gone down on a bus with a bus load of people who were hired by dealers who would set up hotel roims.food. transportation to 3 to 5 Dr visits a days then hit several Pharmacies to fill the scripts. They were bringing back aproxamitely 10,000 pills in a 3 day trip! I have been disabled for 24 years. My doctor just retired last year after treating me for 33 years and he passed my chart and a personal referral as he went to school with his. In the 15 or so years that I have been under contract, I have never failed a drug test, a surprise pill count, never asked for extra or early refills. I had one incident of theft back in 2006 when I broke up with my fiancé and hours later he tried to kill me then stole my purse with my meds inside and drove off in my car! Thankfully he didn’t kill me but he thought he did. Also I don’t drink and have never ODed. The last time I had a med change was about 8 years ago and it was a forced decrease by 15 mg and I must go to a pain clinic to see if there was anything they could do to help me. The only option was spinal injections on both sides of my spine at 5 levels! I have had about 40 or so and not once has any of them worked. If I didn’t do them I would loose my meds. All of this was forced by the insurance carrier, my doctor had to do this or he could loose his license! The new doctor acts like I don’t need these meds.
I guess my point was about contacting all these people and going to the media scares me as I fear making waves could cause me to loose my meds.
Did you feel like there would be retaliation?
I want to come forward and help myself and others like me.

Brue

Well, it’s good that someone like yourself is still healthy enough to visit numerous people and offices. I’ve participated in phone calls during seminars that HHS has had in the past. I’ve sent my story to them as part of a request for feedback on their part. The bureaucrats spent a couple of hours trying to determine if neuropathy involved tingling, etc. I had my medication tapered, but has since been restored when the clinic observed that I was “acting crazy” because of the pain. I’ve talked to a couple of elected officials here in Nevada, and these people are sick. They’re globalists who are more concerned with smart meters and regulating every drop of water we use. Globalists don’t care about people. They want us gone. We are the easiest group to extinguish, unfortunately for us. I’m tied to a bed 20+ hours a day. I can’t visit anything. Bruce

Cindy

ps –

I do agree with an earlier post by Glen, which says that he can’t tell if this author is for or against those state programs.

The way this column is written, it assumes that readers have more knowledge and context than we do.

This is not the first column published on the NPR that I find confusing in this way.

I wish the editors would read columns from the view of outsiders, to avoid repeats of this fairly frequent issue.

Background facts should be stated at the beginning of each column so that readers aren’t forced to enter in the middle.

Cindy

This was extremely interesting.

It never occurrred to me that contacting legislators from other districts — districts where my vote has no impact — could possibly be worthwhile.

But apparently, that’s not the case; at least not always.

KEN C Harrell

Thank God here in Ar.
I have had NO problem getting my medicine.
I am so sorry for you guys in different states.
I know I would have killed myself if I were in many of your shors.
My prayers go out to you.

dan bolger

Pdmps are HIPAA violations. Where is the ACLU?

Stephen Matrese II

Those databases hurt pain patient with false positive for doctor shopping and violate our privacy. They are never used to justify treatment, but they are used to justify not testing people

Marsha Blunk

DEA CLOSED MY doctors office, so went to new doctor & he informed me there is nothing wrong with my spine or pain. So, I’ve been in pain management since 2004……do I call a lawyer? I saw an excellent Doctor riot to seeing the one that DEA is investigating, but he moved his practice to Miami.

Rosalind Rivera

Wonderful job and inspiration Ms. Cremer!
I am a chronic pain sufferer myself. Yesterday was my Pain Management appointment with my pain management doctor. While I was trying to convey to him how pain is causing me so much grief and breaking down my spirit, I literally broke down in tears! My doctor is very concerned and sympathetic to his patients dire needs to control excruciating and debilitating pain however most of the decision making is out of his hands. About six months ago, even though is pain, I was a somewhat functioning person. Today I am speaking with my doctors about sending a pre-authorization request for a wheel chair, as I can no longer function. I am bed bound for 99% of my day and house bound for 99.9% of the day! This is due to the forced tapering of my pain medications. I am not a drug abuser. I am a professional women with a good character as well as grounded ethical and moral values however even I have had thoughts cross my mind as to seeking alternate methods of controlling my pain and that includes not so very good ways. We that suffer as I do must continue the fight to have these criminal and insensitive laws that do us no good but instead are causing so much damage that the rate of suicides are increasing as we just don’t want to live in pain any longer. It’s just too much!

Melissa

Way to go Mary! On behalf of chronic pain patients everywhere, we THANK YOU!!

Terry

I have contacted my government officials as you did but only from my state. The problem is folks aren’t going to take the time to contact everyone. If I could suggest, maybe you could put a link to your letter along with the emails of everyone you contacted. People might be more willing to advocate for themselves. It’s just a suggestion. We need to bombard them with millions of emails. I wish I knew of a way to speak to the millions who suffer. The National Pain Report only gets out to a few thousand. I’ve been racking my brain trying to think of a vehicle to get to millions. I appreciate all that you do. God bless you.

Vincent

Inspiring post, ty

Larry J Orischak

Thanks for the inspiration!

Stacie Wagner

Thank you for being such a wonderful advocate of all chronic pain patients everywhere.

Debbie Nickels Heck, MD

I love the music of Queen. I’d been an excellent pianist in HS but with other necessary activities had let that slide over the past 40 years until watching Bohemian Rhapsody. After 20 yrs of not playing, I restarted. One song everyone THINKS they know is “We Are the Champions,” BUT most only know the chorus. After getting the piano music I read the words of the verses. “I’ve paid my dues, Time after time. I’ve paid my sentence, But committed no crime. And bad mistakes, I’ve made a few. I’ve had my share of sand kicked in my face, But I’ve pulled thru, and I need to go on and on and on and (Chorus). I’ve taken my bows, And my curtain calls. You brought me fame and fortune everything that goes with it, And I want to thank you all. But it’s been no bed of roses, No pleasure cruise. I consider it a challenge before the whole human race and I ain’t gonna lose!”
THAT’S what it takes INSIDE to become a CHAMPION of a CAUSE, your personalTALENT or to achieve anything in life. I read the words of this to my grandkids last night because as kids in elementary school I wanted them to realize WHAT it takes to achieve their own personal goals and abilities.
THAT’S what it will take to reverse the wrong that’s been done to PAIN PATIENTS. It’s not done alone or without failures until the goal is met. Blame accomplishes NOTHING but poor attitudes. Champions and winners develop only thru trials, mistakes, losses and the fortitude to continue on…until their goals are reached. Find your way to make a difference in this process as a POSITIVE member of the team fighting for justice for pain patients. Don’t just “sing the chorus.”

Glen

I don’t know whether Mary Cremer is for or against PDMP. Personally, I have found most politicians useless to pain patients. We are not significant enough in voting numbers. We need “media” exposure” .It is the TV that both politicians and the public are influenced by. It is okay for many soldiers to die “SAVING PRIVATE RYAN”. No one needs to risk anything (with the exception of votes) to save thousands of citizens and veterans from negative media propaganda. “All evil needs to exist is for good people to do nothing”.

The great state of Missouri is just a little different than the old state of Tennessee. I lived in the wonderful state of Missouri for years. I miss it greatly. Unfortunately Tennessee does have a drug prescription monitoring system. Those I have contacted refused to contact me back with the exception of Dr. Phil Roe. He sent me a letter three years ago stating he was going full force with the opioid crisis… Good day! The staff of the president informed me that I was to take things up with our federal agencies who by the way have taken a “Walk on the Wild Side.” I’m glad you’ve had success and perhaps, just perhaps there’s someone among us who isn’t tired of trying. From now on I’ve decided to take it to someone that will listen, that does listen and that will in His own timing act upon my requests, his name is God.