Chronic Pain Notes- Oregon Petition & Don’t Punish Pain Rally Reaction

Chronic Pain Notes- Oregon Petition & Don’t Punish Pain Rally Reaction

By Ed Coghlan.

We wanted to catch you up on a couple of items we’ve been covering at the National Pain Report.

As you know, the Oregon Health Authority’s (OHA) Health Evidence Review Committee (HERC), are currently considering a proposal to severely limit access to opioid pain medications for Medicaid patients.

This week B.J. Cavnor, who manages the One in Four Chronic Health Collaborative, wrote an op-ed arguing that the state should listen to its patients.

Read what he had to say here.

His group is also running a petition – which you can view and decide whether you want to sign here.

Don’t Punish Pain Rally Defended

Our friend Arianne Grand-Gassaway sent a note on social media that we thought was interesting and worth publishing here.

“Saw a comment the other day that the Don’t Punish Pain rally turnout was ‘disappointing’. Well, this is my response to that assertion.

I organized a rally in my town at the last minute because I couldn’t make it to Sacramento. I also flooded my FB feed with news coverage of other rallies. I have Myalgic Encephalomyelitis and a C-spine injury, I have also been without pain control for almost5 years now and it wasn’t easy for me to show up.

Perhaps it’s important to put this whole thing in context; most pain patients are sick and in pain, many no longer have the medicines that allowed them to get through their day. To expect tens of thousands to take to the streets is an exercise in futility.

That being said, if even one person can start a conversation, if a handful of people can show up for the thousands that can’t, that is not disappointing that is courageous and commendable.

Rosa Parks was one woman who refused to move, not because she was too tired to move but because she had made the decision that was happening to so many was WRONG.

Anyone able should be standing up for what’s right, even if that means standing alone. And for those who aren’t pain patients, those who realize the inhumanity of what’s happening to the most vulnerable among us, SPEAK OUT and ADVOCATE.”

Featured image: ID 110899178 © Artur Szczybylo | Dreamstime.com

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Authored by: Ed Coghlan

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Nicki

In my honest opinion this whole Opioid crisis was meticulously planned out and YES this is genocide inside the good old USA. My brief story … at 16 yo I said “NO” to drugs and sex as a result I was beaten and rendered a quadriplegic confined to a wheelchair. I was in the Rehabilitation Hospital and given the golden exit award for not participating in the drug program. Not taken anything for pain for over 25 yrs after my spinal cord injury. In 2004 I was hit head on collision by a drunk driver. It was in 2004 my Dr. talked to me about “quality of life” and knew my reluctancy to trying pain medication. I tried other medications first like Cymbalta which took me a year to get off of. I tried but those medications didn’t work for my pain. I have Horner’s Syndrome Frankle Class C, which basically means I have hypersensitive sensation and can feel every little thing. Opioids ER work best for me, and I have always taken my medication responsibly and never early. Last week at my pain management appointment, I asked my doctor how far are they going to reduce my pain medication to ? He responded to 90MME – Holy Crap Batman, how am I going to function at that level. I said to my dr. “You know that the CDC recently (quietly) admitted that the crisis isn’t coming from the prescribed chronic pain patients” he couldn’t keep eye contact with me and looked down and said “yes”. So I am being further punished for others wrong choices. The health care system in the US is so highly dysfunctional it isn’t even funny. Lumping Chronic Pain Patients into a whole regardless of their diagnosis is incredibly insane and very wrong. What the hell is wrong with these decision makers ? It always comes down to the almighty dollar. The Root of all evil. Who is paying them off ? Reducing the burden that chronic, Intractable Pain Patients place on the system ? Yet the Pentagon can’t find where billions of dollars have gone. Go figure. More tax breaks for the ultra wealthy !!!

Heather Vantress

I agree! You go girl! I went to the last DPP rally, 4 hour drive! Printed out tons of signs and got the idea to have empty shoes be standing with us in the rally, most of the states took in my idea too. Cause I know anyone in my situation can not make it, there are barely hanging onto their life and sanity in sever pain, cause of Drs histeria from government bullies!

I don’t know who said that comment to you, but it’s wrong to say stuff like that. I seen a lot of that on the main DPP page after our rally and it made me sick to my stomach..

Only kind, loving, & encouraging words should be spoken after such a HARD event for ANY of us to make, but even more so for the one heading up the event.

I’m so proud of you stepping up, and sticking up for yourself!!!

Joe Dirt

I just now got an increase in my pain meds thank the good lord. I’ve had 7 back surgeries and scheduled for another next week to get spinal cord stimulator removed. It did nothing for pain just made it worse. I can’t have an MRI with it in me to see where the problem is. Dr. Thinks my fusion between L2 and L3 didn’t take and the screws are loose. No way to tell without having an MRI. I live every day in bed or in my recliner. I sleep, eat and spend most of my days in my recliner. I can’t even sit at the dinner table to eat a decent meal. I can’t cook for myself because I can’t stand long enough even with the prescription I get now. Being in excruciating pain every wakening moment of your life is not fun. People in perfectly good health making decisions for people in excruciating pain is not right especially when they have no compassion whatsoever for human life.

Cheryl Beane

I just read yesterday on vox.com that the Senate and Congress have voted to not reduce a patient’s pain meds ,realizing that wasn’t doing any good ! Instead they have been allocated billions of dollars to help more people who are addicted to opiates and this includes illegal drugs ,such as heroin and other street drugs !
This is a shortened version of the complete report .

Steven

Thank you for trying! One thing I do not understand is why we are calling forced tapering making the pain patient suffer or anything otber than genocide by suicide! That is exactly what this is with all the TORTURE you can stand first. Sorry, everyones case is unique but I have just about had it. I certainly will not make CHRISTMAS. My doctor just sits threre like a robot reducing me now 50%. Nevermind I am saying I cannot do this and the government protocol is killing me. Are you in there? I AM GOING TO DIE. No, there is nothing I can do he says. Maybe with the stimulator you wont need any medicine. Let this nightmare end. The bible says death comes as a friend. This is MURDER at any age. By the chart I am cheated out of 18 years! How about you?

Marti

I have problem with fighting for Medicaid I have worked all my life and people fight for those that don’t even try. I work so hard ended up with chronic pain barely able to walk I’m proud of myself for that. Also I don’t understand why our government allows certain states to sell medical marijuana who can afford that I checked on it how in the world can Medicaid afford it I surely cannot and I worked qualify for Medicare and a widow

Susan Simpson

Very well written! Thank you! Jody with all due respect you have been misled I have stage 4 terminal cancer and am an addict in recovery, 10 years clean Nov 25th if I live to see it. All funding was took from state rehabs for detox centers based on income. I try to help addicts. I know! I have lost over 3 friends waiting for what they call a scholarship – they were pain patients who turned to heroin and it was laced with fantanyl. Rehabs are saying come clean! There are chemicals such as alcohol and benzo’s like Xanax where the detox is fatal. There is a FB for resources for addicts where they put their state pleading for a open bed in a rehab with detox, rarely one post they have a bed. Meanwhile Trump just gave another country $49 million for humanitarian reasons but we can’t take care of our own people, dying at epidemic numbers, and the day before he held the conference on the BS opiate war – he don’t tell the public he took federal/state’s rehab’s funding’s to help addicts and gave it to the DEA for policing! The war on drugs has effected all of us the people in pain, addicts, our families.

Joyce Kotaki

I already signed this and explained why I oppose this. After breaking my neck, literally, I would be in a state hospital, unable to function, without the pain medication which masks my pain so I can function day to day.

sandra pepper-hill

Arianne Well stated and True… I am 56 and I am a CPP … I was not able to attend either of our Rallies . I do as much as I can to help our cause .Through my trusty PC. At times it is very difficult as I have just recently lost my eyesight. But I will keep on doing what ever I can whenever I can and I am so grateful for you and the others who did make it to the Rallies . thank you so very much

Jody Hoffman

We are all causalities in the new war on drugs. The government can’t stop the street drugs so they are coming after the ones that they can stop. They have to have a reason for the DEA to exist and the public wants to see results. Millions are being spent on treatment for addicts but the ones that are in dire need of some pain relief are left to suffer. We can all write our representatives & tell them what you are faced with, we can all start a petition in our state’s to put in front of the governor of our state. These things can be done from our homes. Until we start making them see us we are going to be invisible.

Rochelle

Excellent and she nails the reason for what some might feel turnouts as being disappointing. Like the author stated most are in so much pain especially if our meds have been stopped or greatly reduced. Going to the bathroom or trying to even prepare a meal can be overwhelming. Living in a state where our Capitol is an all day drive obviously precludes one from even this kind about going. Even if its only an hour or two drive, its irrelevant. We simply are not physically nor mentally able to make the drive let alone walking to the venue and being a participant.

Factor in also most of us are now on disability meaning our finances are limited, very limited. I want to personally think the organisers and participants on a job well done. All of you did a fantastic job!

Hayden

Pain management patients can not attend rallies easily and petitions to the appropriate health welfare agencies is not having ANY impact. Neither Senator for my state cares, (Richard Burr and Thom Tills two of the elite, I mean elect) …..at all if all the states pain management patients suffer worse now, needlessly with the 2016 CDC “guideline” I “think” my pain management specialist of 8 years talks compassionately but, he is following the protocol that DEA has forced him to do including reducing ALL patients in opiate medication “to the letter”. Iit is my right to protest against human suffering both here in the USA and across the entire face of the planet but, I have never felt like efforts are so in vain and that dot/gov has a “plan” and NO amount of suffering is considered in the “plan” to totally take.opioid medication off the table for non cancer long term, lifelong pain management patients. We are asked to “wait” until an acceptable to……..government, not we the patients “plan” or medication is developed and then that is all we are “allowed”. It simply does not matter that people are in a worse state of health now, with a pain level that could not be withstood by any human being and zero other resources, truly effective resource of pain management even exists or will exist we are to simply “take a couple “tylenol” and “tough it out”…everyday, 24 hours a day…….for life? WE have a basic human right to have medication available for pain management especially when it already exists. To simply reduce or make unavailable the medication that our bodies are receptive to such as cannabis AND opiate medications is not only cruel, it is criminal. It is NOT about substance abuse and overdose or the CDC “guideline” would have already been pronounced LOUDLY what it was supposed to be….a recommendation to opioid prescribing physicians, not LAW, “Adopted” by every state as law, it will be difficult to slow the knee jerk reaction now started by profiteers.

cindy

I have a problem with groups that only use Facebook, like the US Pain Fdn that I just found about this week.

I’m not on FB and am afraid of it, and here’s why —
Last year, in order to be able to access info that was only on FB, I created a new, separate email address from my normal one, and then used it to create a FB page, for which I used a fake name, fake date of birth, fake everything. Within minutes, my FB page had photos and names of people that I might know. One of these was a man I worked with decades ago; others were also from my distant past. A few were unknown to me. How on earth did FB figure out, in minutes, contacts of mine from decades ago when I used entirely fake info??!! That caused me to delete the FB account and live without the info I wanted.

My story gives even bigger cause to fear all the stories about FB privacy issues.

So, if there’s a way to use websites and not FB, I’d recommend and appreciate it.

cindy

Showing up for anything when in chronic pain is difficult. My entire life is my monthly pain Rx appointments and going to the drugstore; some other medical appointments; and occasional grocery shopping. There’s very little else. Because I also need to deal with laundry, paperwork, and the kitchen; all of which these days are more out of control than ever in my entire life due to additional recent, short term medical problems on top of the daily pain.

This is why I dont’ know if I have much hope for these rallies. WHat’s needed is for the family and friends of sufferers to show up in our places. And doctors, nurses, etc

Linda

Beautifully said Brianna. Thank you for not only great wisdom, but also for being able to write a piece that has POWER.

You have the ability to speak the words “you who cannot physically participate are not alone and I see you”, and the important message to all others about why it is you do not see us in those great numbers.

Millions of us, yes millions, are in a catch 22, stuck between a rock and a hard place, unable to do what works so well – to physically show ourselves. Kolodny and his cohorts are banking on this fact not only here in the United States, but worldwide. I don’t know if many realize, that Kolodny has had an incredible impact on the loss of opiods, especially in hospital settings across the globe.

My personal story is shocking to me, just like so many others when it comes to our health and our doctors and our pharmacies. Mine is much too long to write about but I will say, my latest is the cancellation of my cancer surgery due to minimal pain relief, the pharmacy and regular doctor taking away one of my two inhalers, which has thrown me into the abyss of “working” on every breath I take in. Between my extensive pain all over my body and now struggling to breathe, it makes me realize that all of the many doctors I have, spread out all over town, not one of them cares at all. They just want to get a patient in, and get them out as fast as possible.

I am in palliative care supposedly, and it is meaningless. It’s just more doctors doing nothing at all. I am so weary of repeating my story to them, my medical life, when it’s right there in front of them on their computer. The first question is always the same – do you have any thoughts about hurting yourself. I’m SO SICK OF IT. I’m old with many health issues. I just want a doctor to give a REAL damn.

David Cole

Amen to that, my pain meds have been cut by 2/3, it would have been extremely difficult for me to make the 6-hour journey 2 the state capital in Oregon. Then I ask the organizer of there any parking close to the Rally Point, there was not. So I would encourage people who organize rallies to make sure there is plenty of parking for disabled people.

Mary C Odell

My name is Catherine O’Dell and I am from Virginia. My sister has been suffering from the very crippling disorder known as CRPS for over 4 years now and is currently receiving her pain medication from a Pain Management facility. On a best case scenario, she would qualify for any number of implants that can assist in relieving the debilitating pain that she is in 24 hours a day, 365 days a year. Except for one thing…she also has ITP(low platelet count), which makes it impossible to do any type of long-term implant because without her weekly injection of Nplate, her platelet count would drop so severely that spontaneous bleeding could occur at any time, and she would die. So the only thing that she has to help her maintain even the smallest amount of functionality is her Oxycodone 10mg 4 times a day. If anyone knows anyone with CRPS, they know that is an extremely low dose for a disease that is considered the 2nd most painful disorder known to doctors. She is a Medicaid recipient as well.
The problem I have is why is Oregon just focusing on Medicaid patients? Opioid recipients that have non Medicaid insurance also have their own share of addicts and abusers. I’m in no way, shape, or form advocating taking away or tapering off certain pain medications, that is, for actual documented chronic pain sufferers. I do believe there should be a process that better differentiates the addicts/abusers from the actual chronic pain sufferers. Thank you for letting me share.