Don’t Punish Pain Rallies

Don’t Punish Pain Rallies

By Ed Coghlan.

75 Don’t Punish Pain Rallies held around the country on Tuesday (September 18) were termed a success by the Rhode Island Woman who organized them.

Claudia Merandi, who used social media to promote the events, some rallies had a handful of people and others more than 200.

She also said that there was considerable media attention which pleased her and the protesters greatly. She believes the media are starting to get it.

“I think the mainstream media is ready to have the discussion because the general public has grown tired of the words “opioid crisis,” she said. “The media and the public acknowledge we have an illicit Fentanyl crisis and it’s being shipped in through the US postal service.”

Merandi said during a live feed Tuesday night, the members expressed a euphoric feeling “because that’s what happens when you protest for a cause that affects you day and night”.

“I get hundreds of messages a day but the ones that resonate are the people telling me the protest gave them a reason to BE…that’s big…so that makes it all worth it.,” she said.

“Some of these people didn’t know who their senators were and here they were, yesterday, talking with the media, giving them a sense of empowerment – that’s cool,” she said.

Many of the protests had speakers, shoes to represent the lives that were taken; some rang a bell to acknowledge those that couldn’t be present.

Her favorite sign that she saw was “Three’s a crowd” meaning the government, patient/provider.

“I thought that was brilliant.”

The logical question is what happens next.

She is already planning her next event – in January 2019. Her goal is to have at least three rallies in each of the 50 states.

If a person is interested in being a contact person in their region – Merandi wants to hear from you.

More on that in future blogs.

Quick question for our readers.

Did you attend one of the rallies? If so, share your experience with us in the comments section.

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Authored by: Ed Coghlan

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T J

Was trying to reach WFMZ 69 .I was apparently diverted to your post. So that’s what the video comment referred to thanks.

T J

Attended the Harrisburg rally and along with some others in attendance spoke on behalf of patients dealing with unnecessary agonizing pain.would love to have a copy of the entire video so we could put it on our Don’t punish pain Facebook page ,is this possible? Would like the entire video not just the edited broadcast.

Molly Canfield

James Harrison

I called wsb 750 before the Atlanta rally to inform them of the event. Person answering phone gave me an email address to send info to regarding DPP…unfortunately it did not go. Address invalid. I really wanted to go but had ongoing pain which i believe im undermedicated for. Maybe next time, next rally. Yes CDC strongly looks other way.

YES I attended the rally in Oklahoma City, OK. That is me in the picture in the middle. I have Hereditary Coproporphyria. I also had “My Pain Story” published by the National Pain Report. That is my friend, Lisa, on the left. drs want to remove her stomach due to Gastroparesis. On the right is my friend Donna. She has severe Dystonia. All of us suffer severe intractable chronic pain from not only our main Dx; but also from all of our comorbidities.
http://www.dontpunishpainrally.com
http://www.porphyriafoundation.org
Teresa 🙂

YES I was at the rally in OKC!! In fact that is me in the middle…I have Hereditary Coproporphyria. I actually have had “My Pain Story” published by the National Pain Report….that is my friend Lisa on the left…Drs are eanting to remove her stomach due to Gastroparesis….my friend on the right is Donna…she has severe Dystonia….all of us suffer severe intractable chronic pain from our main Dx but also pain from all of our comorbidities as well.
http://www.dontpunishpainrally.com
http://www.porphyriafoundation.org

Lisa Osborne

I attended the rally in Olympia Washington with my adult daughter. We went the day before, so that I would not get too tired and to keep my pain more manageable. I spent the previous 5 days resting, so I could go. I was worried I would wake up rally day unable to function and miss it. I really enjoyed meeting so many men and women who deal with complex health issues and also are politically involved. It was also great to meet Patty Murray’s representative. It made me feel like someone in government is at least receptive to our issues, as opposed to just slashing my medical care, disability SSDI, and the programs I rely on. When I came home and saw rallies all over the US on the news, it made me cry. Finally we are organizing and working together with one Voice. Finally we are loud enough that someone can hear us.

Vicky

I assisted organizing Denver Colorado Rally. we had two other venues: Greeley and Pueblo. we had no experience and did not know how was going to turn out. Denver started at 10:00 am. about 12 people shoed up. we thought : “better than in April when we had 5”. by 11:00 another dozen joined. we started getting goose bumps. we had media as well. there were several vising groups – some elderly and some kids – at the state capitol that stopped by and took pictures. Greeley had a good turn out as well…..for a very small town they were hoping to have maybe a half dozen participants – they had 14. Pueblo’s organizer got sick and could not finish the task. the night before we had two wonderful ladies that just joined the group taking over…….. they went out and rallied. we were able to meet with a state representative as well. all in all we had a good experience…… gave us hope.

Jeanne Hyatt

I did not attend but I saw this video. Thank you to all who stood up for all chronic pain patients everywhere. https://www.youtube.com/watch?v=RBj2Zjmi72A&feature=share

BethAnn

Anne, I also live in NC. After speaking with my local Senator and my Pain physician I was told that each state makes their own laws concerning opiods. Chronic pain patients are exempt from any new regulations in our state(as long as I remain a compliant patient). My Doctor assured me that my meds will never be cut unless I find that I no longer need such a high dose. I’ve been on the same dose for years and I am able to live my life and not be homebound like I was before I started seeing my Doctor. The legislature’s are not allowed to practice medicine and they are subject to lawsuits if they try. Luckily for us the NC medical association is huge here and the law makers realize their importance to our state. Whew… I hope this eases your thoughts.

Taryn Ellis

I am lead organizer for Anchorage Alaska. The media declined to cover this story. We had 4 people in our protest. Now that Alaska has joined DPP, all 50 states are represented. I fight for my child who has been denied post op pain meds from his pain management doctor following his last spinal procedure in July. Please get the message out. Pain comes to us all. This issue will come to you or your family member.

Anne

I live in NC and would like to participate in pain awareness rallies in my area. Can anyone let me know where I can get information about up coming events in my state please?

Gee

We were a small group but we were there. 2 in wheelchairs, one that drove 4 hours and never found a parking place, one had to walk 5 blocks to find parking spot. We had no news coverage even though they were informed but the police did show up. Luckily we had a permit. They also showed up again at 2 to make sure we were leaving. We were on sidewalk next to VA hospital. I guess the 5 of us looked like we were going to cause trouble. Maybe we were going to ram people with our walkers and wheelchairs. There were 2 girls down from us passing out brochures and police never went near them. I was surprised we got the attention of police but not media. Maybe next time media will think about covering our rally.

A chronic pain patient speaks

I read that someone else looked for these rallies the day before they took place and they could find nothing on the internet!

Although I did not think that I could make it I also looked for something on the Internet to basically give me a boost; knowing people were trying to do something about this catastrophe and I could not find anything either!

A chronic pain patient speaks

I had hopes of attending but in the last 2 months my doctor reduced my fental patch as well as break thu medication by half leaving me to figure it out myself!
When I could not handle the pain and after two calls to his office I was told I would not be seen until my next regular appointment.
I ended up baker acted and am waiting for my regularly prescribed steroid injection but losing hope fast! I’m afraid that this cannot be fixed fast enough for me! My pain is beyond my tolerance!
I had gained weight over the last 15 years while I suffered chronic pain and was treated with opioids .. including a morphine pump at one point which lasted 7 years until the battery died! I now want to do the same! Believe me when I say I won’t go away quietly! I know if I go I will need the help of my pain medications! It will not be a overdose however … hell no!
I will leave a suicide note and beg my loved ones to go after my doctor and everyone else that led to my demise!
If they do not expect a cancer patient to deal with pain short-term why is it they expect someone with excruciating pain to deal with it long-term?
This was not my life 15 years ago!
I was a flight attendant with a career. A herniation in my cervical spine lead to a surgery that left me with broken screws which for whatever reason no one seemed to be able to find!
When the pain was finally so severe I wanted to end it .. I turned to ER nightly for 10 days when they finally ask me to take a drug screen in exchange for an x-ray! It was still not found that night I was told I had a contusion which I was then informed was a bruise. The following day I got the call from the hospital to return and have been a pain patient ever since!

Kathy Pflugrad

Due to my numerous disabilities I’ve never been able to attend any rallies. But have been praying that the rallies all across The USA. Were successful.
Kathy

Barbara W

This is wonderful News!!! I attended a Pain Ralley in West hills California.About 10-12 people showed up. The Event had been handed off to someone last minute and West Hills Hospital canceled last minute some people drove 4 hours! I spoke with West hills hospital & asked for the CEO but the Executive asst said their are 4 directors & It was not on anyone’s schedule. Just so we know for future need to register with the the Hospital or where ever the event is being held. Because it is still their property. Then it can be approved!

Julia Heath

I was at the rally in Dallas, TX. We didn’t have quite as many as we hoped, but it was wonderful to come together for a cause that’s more than “just important”, it’s life & death for so many. Those who don’t suffer with the torture of chronic pain may not understand the seriousness of this issue, but we consider it our job to educate. This is something else we were able to do at the rally as people passed by our city hall location. Looking forward to this continuing to grow and proud to be a part of this movement from the first rally!

Jim Moulton

Hi,
I could find nothing about the rallies on the 18th or internet, could anyone?
Jim

Pete Gierke

I want to thank everyone who got to go or made a point to go to a pain rally ,thankyou from my wife also.I will make a point to get to a montana rally hopefully we have one in Billings since we have one of the only pain clinics i know of with litterally thousands of patients who have been forced to taper our pain meds and gone through pointless withdrawls and unamaginal pain that once held at bay to only return and destroy our lives ,jobs ,Buisnesses like me and homes and relationships,please hold on all you can i know your pain please dont take your lives we can change this if we all help!God bless ,please hold on!

Does anyone know how many people showed up at the CDC in Atlanta ? The local news did a live story at the CDC about the hurricane response team with no mention of a Don’t Punish Pain rally going on outside. I feel like ABC or it’s local affiliate are trying to cover it up and go with the CDC’s distorted facts. CDC probably let them inside the response center in return for not showing the protest outside. ABC was actually telling people in Phoenix to kill an endangered species and it’s eggs because the Sonoran Dessert toad contains a drug called 5-MeO-DMT and bufotenine and it can kill a small dog if eaten. But we all know it’s because they have the morbid fear that somebody will get high on the DMT. I feel horrible to have missed the protest but I had to go with my sister to pick up her husband at the train station because she’s unable to navigate an unfamiliar territory and I had no money to ride the bus back and I had no sign to hold because I only learned of the protest the night before. It was kind of a comorbid condition as many factors including IBS and a.concussion were actually the main reason I didn’t insist on bumming $3 for a bus ride. I’ve had a concussion for about a week but haven’t been to hospital because there’s really nothing they can do except belittle you and accuse you of drug seeking then have the police throw you out and send you a bill for not treating you that you can never pay. But I have all the symptoms. I don’t know what’s worse the constant ear ringing, the nausea, headache or light sensitivity. If I hadn’t had to show my sis where the train station was I wanted to hold a sign outside the hospital. But in drug Nazi Georgia the police will probably harass me. Guess I’ll find out when I make a sign and start a protest. I may wait til the next rally and go to Atlanta since Conyers police will probably not issue a permit to protest unless it’s an anti-opioid zealot protest. Thanks to all who attended the life and death fight for our rights. God Bless you all and all you do.

cindy

I am extremely grateful to Claudia and to those who attended rallies. I wish I was well enough to attend a rally. Pain patients by definition are a weak constituency. Even with my meds, I can’t work and am largely housebound. And my house is a disaster of disorganization and dust and dirty dishes.
Hopefully people who, thanks to their meds, function better than I do will go to these rallies.
And everyone should contact their state and federal legislators. If you dont’ know who they are, it’s easy enough to find out with a google search.

T J

Harrisburg Capital, sparce but enthusiastic gathering, media coverage by WFMZ 69 ( not even Harrisburg)​ area but ran a segment in their newscast in Reading area, a big thank you for that. WFMZ. Hopefully the next one will be better, I know the weather was [edit] and people in pain have trouble getting around.

Sandy Miller

I follow all of the reports. I want to get more involved with chronic pain diseases, as I live with crps. I don’t feel the government should be allowed to set guidelines for those of us who need medications just to function. It should be between patients and providers only. We know our bodies better than anyone.
Sandy Miller