Opinion: The Battle Continues – Do What You Can Do

Opinion: The Battle Continues – Do What You Can Do

By Judie Plumley.

This week’s Don’t Punish Pain Rallies Across the U.S. created attention. Judie Plumley writes an open letter to the chronic pain community.

To my Pain Sisters and Brothers,

We are faced with a very difficult problem of how to go about being heard by our government while taking care of ourselves as best we can. 

On Facebook, we have the Pain Advocacy Group C-50 for every state and the Don’t Punish Pain Rally.  We had our first Rally last week and now we are not sure how to best proceed from what I am reading in comments.  We want to help, we want to share with others our pain, what works, what doesn’t and each of us has something near and dear to our hearts.  We must stay focused on our common goal.  That made me think of one of Al-Anon’s 12 Traditions.

Judie Plumley

Our common welfare should come first. Personal progress for the greatest number depends on unity.

When you join a group make sure you read their mission statement.  C-50 stays on top of current events that affect our lives and directs us to call ‘t Congressmen and Senators, the FDA or whatever organization is voting at  the time.   Our sole purpose is to provide the most current information to you, so you can take the steps to change it if need be.

Don’t Punish Pain organizes people so we can demonstrate and bring our message to others.  Their goal is to make sure it’s done correctly and safely, and to cheer us on!   There are other groups who will help with support, groups that demand medical transparency, and groups that help with alternative pain relief.  All are very much needed, and I belong to most of them.  However, each group has its own message and that can’t be diluted. All these groups are for our common welfare.

We also need to remember principles above personalities.  This is new to most of us, and we are faced with such an insurmountable task when we are already scared, broken tired, and discouraged. How do we fight for our rights?  we must do it with one voice, so we cannot allow our differences to divide us.  Because there are laws being passed like SISTA and the opiate laws, plus laws regarding the DEA, each group can only focus on one thing. Each of these things has merit and needs to be in our pain toolbox. We are ultimately fighting for the right to be American. We are fighting for the right to choose.

On a personal note:

Take a day at a time, a minute if you must.  Don’t take on too much at once.  There are only so many straws you can use today. Do not overdo.

Take a deep breath.  It’s ok to cry.  We are going to do this.

Remember to join the groups in your state so you stay informed, but only do what you are capable of.

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Authored by: Judie Plumley

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Jean Smith

20 years ago I joined the chronic pain community because of a double compound fracture non-union tib/fib.
2 sets of plates and screws, 8 surgeries and an iliac crest transplant later I am still on opioids.
I have a spinal stimulator and was recently told by my physician that i could only get 7 days of pain medicine. I’ve made it last 3 weeks.
I don’t want to go back to my doctor because I feel like a liar/cheat/criminal for asking for pain relief.

I am working 75+ hours a week to be able to have a good home, food, vet care for my dog and just living instead of surviving (barely) on SSD.
I can not continue to work if I don’t have pain relief so I’ll have to go on the dole, lose my house and go on Medicaid.
I DO NOT WANT THAT!!!

But I am helpless because of the restrictions placed on my physician by the government.

I agree that we need to have restrictions but not so strict that you hurt who you are supposed to help.

Mia

The government ruined my body and ruined my life. It occurred when I was strikken with an illness with no cure 6 & 1/2 years ago and lived in bed since.I’m not whining about a few aches and pains. I am accustomed to pain due to other issues. My illness has a pain level on par with stage 4 bladder cancer coupled with end stage renal failure, I have called, emailed, signed every petition for years. . Every pain medicine doctor in my state was threatened, files seized and forced to change specialties or retire. Those like myself (30%) that do not respond to the one medication to address the disease are commiting suicide. 10% did with the accepted medical protocol for needed opiod medication. I do not blame doctors. I was glad to see that two disease specific organizations, The American Cancer Society and The Internal Cystitis Assn are fighting the Feds. Not anymore. The DEA, whose function has never been to terrorize doctors,threaten with drug trafficking charges is what occured. What was “guidelines for primary care physicians” was enforced as law by the DEA. Now we do have state laws. The United Nations and The World Health Organization would like nothing better than to charge the U.S. with violating International treaties signed by inflicting torture on its citizens, as well as causing fear of the government up to and including death in the same manner as citizens who seek political refugee status. They can’t. The reason is because we do not have Federal laws. We are screwed. EVEN IF Federal laws are passed and lenient enough to satisfy the U.N. and W.H.O., so what? We will still have state laws that will be enforced A requested exemption will still affect a Dr.. This has always been money and politics. Follow the money. I don’t see state laws being overturned. If I am missing something as far as state laws, pls inform me because Ive given up. This is legal genocide, not seen since Hitler.

S. Dixon

Great Advice. We do so need to stay focused on our goals.

As we head to DC...

Judy,

Your article is more profound than you might realize. I took particular notice of these points: “do what you can, unity, & principles above personalities.”
Ironically, our community appears to have a “unity” problem on social media for sure.
Are we allowing all chronic pain patients to share space & contribute as best they can or just the people we ‘personally’ deem worthy enough? I’ve seen behavior on s.m. seemingly unbecoming to on-lookers or bystanders. The behavior in question is: ostracizing, isolating, ridiculing, & what seems to be a clique-like mentality among “some” in the community.
How will these actions appear to on-lookers or bystanders & THEIR families, new comers & SUPPORTERS?” These social entanglements can be damaging. On the bright side; we’ve not seen this type of s.m. interaction from “ambassadors” who hold themselves to a high standard & are properly vetted. Sorry, I cannot say the same for a few of the newly formed pain organizations. These self-appointed “gate-keepers” should exemplify professionalism & hold members to a similar standard.
Some of this has become so pervasive over time causing many to be driven off s.m. sites. In dis-belief: I watch as the “Instigators” continue; even though their targets are long gone. This “M.O.” shouldn’t be tolerated. I think its high-time an uncomfortable topic be brought to the forefront. Well, “its not a good look.” I’m getting a little disenchanted with the whole thing when MY OWN connections start to drop as a direct correlation. I sit among them & watch as they play loving victim when called out.
A fitting quote: “a house divided against itself: will not stand!” As Judy alluded to in her commentary; stand on principles(&above reproach). The anti-opioid zealots & key persons are watching. I think it goes without saying: the pain pt community is already a vulnerable population & cannot afford any negative coverage. Excellent article & an essential message from Ms. Judy. Theres a take-away here; for everyone.

Rita A Kimbel

I can’t believe the reaction I got last time I wrote to my state rep. All I got was the excuse that we are having an opiate crisis, and the main concern now is that. He would keep in mind that there are people that need help with pain but opiate overdose is the main concern. I gave up sending letters, still follow Pain foundation news and here at national pain report to keep informed. It’s not going to change, I can’t change pharmacist or pain doctors at this point without being looked at as a pain med.seeker. my 15 year pain is intractable neurogenic and treated with an implanted neurostimulator and opiates, what more can I say to convince the CDC that I need to be at a higher dose of Opiate? Same doctors for the last 15 years, I’m not a jumper and I am exhausted from being in pain all these years. Now I wait to see how it goes if my pain doctor stays open, it’s standing room only.

Julia Heath

Actually this was our 2nd national Don’t Punish Pain Rally. The first was in early April.

HANNA L CAMPBELL

I am in Tennessee how do I find my group?

Robert

Each and every word written in the comments below are exhaustively, agonizingly correct and the fight we have ahead of us will take a public opinion movement like the gay rights movement to turn the minds of these uncontrollably corrupt government officials. With my current doctor (3 years), he has seen me go from walking into his office on my own power, driving myself to the appointments, exercising regularly to having my wife drive me (not capable myself) to the appointments, helping out of the car and assisting me to crawl into his office. A man who has dedicated his life to medicine, taking a relatively functioning person and transforming me into a bed ridden invalid. Being a disabled elderly patient/citizen who has simply become “In Valid” to society.

We have been fighting now for going on 3 years (some far longer), writing everyone we can think of to solicit attention to our plight. Additionally we now have concrete evidence that the whole crisis was fabricated from the start and yet they continue to push the same narrative as they did with the introduction of the CDC guidelines in 2016.

We are up against huge investment banks that have thrown themselves completely into drug rehabilitation clinics. A quick internet search will reveal, i.e., “While cost for drug rehabs can vary significantly, the average price is about $10,000 – $15,000 per month. Whether this is covered by insurance, the government, a grant, a scholarship or is private-pay as an out of pocket expense.” Not to mention that drug addicts routinely fall back to addiction and will return to a rehab clinic a dozen times before either breaking the cycle or overdose. Either way, there is BIG money in drug addiction and Goldman Sacs or Barkley’s Bank is not about to lose money after all the hard work they put into planning this.

Our government is barried in so much debt, they will never be able to recover. Forget the National Debt they always talk about, the $21Trillion is nothing compared to our Unfunded Liabilities which is our obligation to “Baby Boomers” for Medicare and Social Security benefits. Currently the government owes us good ole reliable, former FICA paying citizens approximately $205 Trillion. A figure impossible to wrap your head around when you think that $1 Trillion is 1000 stacks of $1 Billion.

Call me a conspiracy thinker if you wish, but our government cannot afford to keep such a large percentage of the population in retirement alive.

Janet Flowers

How do I find the group to join in my state? I live in Orlando, Florida.

Maryann Holland

Hello my name is Maryann Holland I have had fibromyalgia for 20 years l am on SSD For 8 years now I work as a chef in a nursing home for 15 year other year I work 2 jobs in restaurant and gourmet supermarkets I have three children my husband left me so I always had to work two jobs entil I got the job at the nursing home and I got hurt . I had many operations because of work but the worst one was total knee replacement on both knees no one told me that was the worst thing for a person who has fibromyalgia could do l hav pain all the time. I use to get Oxycodone 30 mg 5 times a day I even had Fentanyl 25 every three days now read warnings so I know that it is heat sensitive You can’t take it in the shower or in the hot tub the medication will go straight to your heart and kill you that’s why all these problems happen in New Haven fentanyl was in the fake marijuana . Well I was doing fine with what the doctor was giving me but then had it all taken away and now I have a pain management doctor he took me down to 20s and now I am fifteenths and they are not working most of my time I am in bed I have to save my pills so I can go out to doctor offices and occasional a concert which I paid a lot for it before I knew my medicine is being taken away my pain doctor said I would never see that again he left me on 15’s because of my not getting out of bed and being In pain but what I don’t understand is this doctor studied under the doctor in Stanford college who found out after many MRI’s that it showed that people with Fibromyalgia Have no dopamine so that’s why we don’t get high when we take our medications it only makes us feel better so now the medicine that makes us feel better other people have miss used and have died from is the only thing that makes our lives normal . And now I hear that you’re going to kill off Roseanne from the show by having and opium overdose so how does that make it fair to us that need this medicine so that we can have a normal life I drove I went out to dinner so I was able to take care of a house now my husband does everything for me and I lay in bed feeling like no life !!! And I know that there’s a lot of you that are just like me and we really need them to change them their minds so I hope this helps to know that I am one of you and I want to do whatever I can to make them give the medicine that we… Read more »

Catherine

Thank you Judie for the discussion. I joined the Rally at the University of Washington and I felt it was one of the most important days of my life. I dont know where to go from here to continue to support the chronic pain issue. In the meantime, my doctor continues to wean me off my meds and I continue to slowly spend more time in bed.

Mona Mallory

Many of these legislators making the opioid laws, have their 401ks invested in the new patented drugs being created. This self-dealing behavior needs to be exposed! If the legislators truly cared about addiction, they would stop the schools from giving our kids meth (ritalin), but now the program has been stepped up to screening all of the kids.

This whole opioid war started in 2010, when the Zohydro application was submitted. I think if we started exposing this crackdown for what it really is, then we could make some real headway in stopping it. Look up your State’s PERS system investments and you will see that many are invested in the stocks of the companies who will profit from the new patented drugs.

Stacy Cooper

Unfortunately , Californians can’t use straws. They’re polluting oceans and they are bad. You get one without asking, the giver goes to jail. LOL but not really- since obviously our government is focused on the wrong things.

Katie Olmstead

For those looking for their state advocacy group, if you are on FB, search for C-50 and the name of your state. That should get it. Or C-50 Pain Advocacy and your state. Should work.

I suspect for all of us, taking care of ourselves on a daily basis leaves little left over for advocacy. Grateful for those who have the energy to do more. I know I am having to put precious energy into fighting my health insurance to cover one common generic muscle relaxant. I resorted to contacting my congressman who has been brilliant, even if he may not actually be able to make a difference. It’s encouraging that he is trying.

Being in pain is isolating. Take care of yourself however you can. You aren’t actually alone. Thank goodness for the internet!

Terry

Hi Judie, thank you for the encouraging words. What I’m going to say may seem harsh but I believe it to be true. I’ve been a chronic pain patient and advocate from the beginning of the so called opiate epidemic. I believe most everything on this forum to be true and agree with 90% of the opinions. Aren’t we fooling ourselves? Like most people on this forum I have been taking opiates for horrible chronic pain for 10 years and my pain meds were cut from 200 mgs of oxycontin daily to 75 mgs daily, and they cut it over a three month period so I’ve had pretty bad withdrawals and probably once a week since they cut me I have bad nausea and diarrhea, it weekens me terribly and I’m just miserable. I don’t think that all of our griping to senators and congressman, the pain rallies, magazine articles written on our behalf etc. are going to do anything. Number one, you’re trying to get the government to walk back a decision they have made, they only care about public perception, public perception is that we are a bunch of drug addicts who abuse pain medication. After all the emails I’ve sent to my senators and congressman and all of my comments on this forum, I have come to the realistic opinion that the DEA is not going to change their guidelines that have frightened every pain management doctor to either drop their patients completely or drastically cut our pain meds to the point if suicides. Doctors are paranoid that the DEA is going to take their licenses away and basically ruin their practice and possibly their lives! Our government has turned into a third world, dictator form of government. The problem is they believe the phony statistics are true. What we need is a champion for the chronic pain community, somebody with a voice, somebody who’s not up for reelection. Does anyone really believe that they’re going to reverse their decisions and tell all of the pain management doctors to reinstate our pain meds to what they were before the “epidemic”? It’s never going to happen. I tried medical cannabis and all it did was make me high, I tried CBD oil, that did nothing, I started going to a pain psychologist, after six visits nothing has changed, I tried acupuncture, another joke, I tried exercising and just felt worse, you get my drift. Short of taking 200 mgs of pain meds, which kept my pain at a tolerable 4 out of 10, there’s NOTHING that I can do to regain my former life and our government has closed the book on us. It’s a sad day in America. God bless us all.

Dar

Our voices will be heard – quickly – when it is tied into money. Are there any Boycotts in place? Who would we Boycott? Who is not supporting all of us in chronic pain? I understand working though our legislative process is very important, but, we need to make a larger statement. I’ve noticed that real change occurs when groups unite and initiate a Boycotts. Any ideas?

Matthew J. Smith

The one thing that occurs to me that is holding us back SO much is that most of us hide our Pain, and our symptoms from everyone. Part of it is instinctual, a weak animal is vulneable, and instincts make us hide our weaknesses, and we have also discovered that people have a hard time sustaining compassion with conditions they don’t understand, can’t be fixed, and endure for very long periods of time. Most have us even keep this from family, and are lucky as he’ll if we have even ONE person in our lives that we can confide in and who even TRIES to understand, much less help. Hell, we even stopped telling most medical providers much of what we endure….. THIS HAS TO STOP, in order for our cause to be heard. EVERYONE OF US MUST DEMAND people understand and pay attention to us for AT LEAST AS LONG as it takes to reverse the governments course of action with regards to us….. THIS needs to be a message that we spread to all of us to spread to ALL we know.

Barbara Roberts

To Jan Fulton, see if you can find your state on FB by entering your state’s name with “don’t punish pain”? I think anyway, that’s how I found my state. (Alaska)

To Darla Bennett, Hi, I feel you, I have a fixed income also, have been on the same dosage of pain meds for about 15 years now. They don’t help like they did the first few years but still help some. I’m afraid that’s going to change very soon though. Ak doesn’t have the restrictive state laws yet but individual physicians sure do. I’ve had chronic pain since 1995 after a work injury, was able to find a different job & continue working for a long time with the help of pain meds. Now I’m on SDDI & have medicare/medicaid for prescriptions/Dr’s etc & I feel fortunate for that. However, I tried CBD oil last fall, it was over $200.00 for what the local business that sold it said was the highest level they sold. It almost lasted a month with careful use & didn’t help. I had wanted to try it at least but wouldn’t have been able to continue buying it at that rate. I admire you for doing that & hope something works out financially. I didn’t actually shop around for mine, it was a business at a trade show near where I live. Prior to starting pain meds I tried about every other alternative out there. I wish insurance covered a wider variety of treatments.

David Hickle

I think government and presidents and health care systems law police pothettic politics democracy liberal republicans should stay out of the affairs of medicine and out of other nations they keep invading other nations other people other humans including their own people and failing and ruining the lives of humanity and I think law government presidents health care system doctor’s specialists and ers hospitals police politics democracy liberals republics should be brought to justice or be destroyed and permanently close down and I mean their company and business closed condemned and tore down and I think that they need to be forced to abide by humanity even if it were to mean legalizing all drugs on planet earth oya USA Ohio government presidents health care system doctor’s specialists and ers hospitals democracy liberals republic police law all has abused me conspired against me torchered disrespected neglected discrase abused their power control authority over me mistreated me persecuted me just because I live in and with pain every pain and I want euthanized to get out of my pain I have suffered agonizing miserable pain since I was 7yrs old I am 40yrs old now and no one can find what my pain is and it’s drove me to hate Ohio USA humanity and planet earth I’ve been in pain for far to long and I only want out of it even if it means euthanizing me I just don’t care anymore and if no one will euthanize me I will euthanize myself I rather die then to continue being a citizens of Ohio and USA and of planet earth

Alice

I’m just about done. My last mri has 10 line items of abnormalities with my low back. I ruptured two discs in 1995 had three surgeries and have been in pain since then. They think we’re just after drugs for recreational use. God as my witness, if there was a miracle and this pain could be taken from me I’d never even look at another pain pill again. I know the rest of you can say the same. My meds were cut in half in January and at my last doctor visit I was told there’s another reduction coming. I barely function now. That dreaded doctor visit will be my last visit. It will be the last of everything.

IT’S A NATIONAL HEROIN/FENTANYL EPIDEMIC, NOT PRESCRIPTION (OPIATES) DRUGS.

SAD BUT TRUE: I have lost family members and friends, and I am always reading about too many young and old who have died from misusing DRUGS. It is tragic, for sure.

HOWEVER, I feel compelled to defend these prescription PAIN killers (opiates and others in that class) that are truly MIRACLE drugs for the 99% of the people who NEED/REQUIRE them and take them AS prescribed. Some people I know have been prescribed them for up to 10 years for chronic debilitating PAIN. They cannot live a quality productive life without them. They are 100% safe when used AS PRESCRIBED.
Please STOP blaming these prescription drugs because 1% abuse them. It’s the illegal street drugs HEROIN/FENTANYL that are killing our family and friends; very, very few from illegally obtained prescription (OXYCONTIN) drugs. It’s the HEROIN/FENTANYL, NOT the synthetically manufactured OPIATES;  i.e. OXYCONTIN.  Alcohol, which has killed and maimed hundreds of thousands of innocent people and destroyed families throughout the years in the USA alone, is a perfect example.

There are always those who will abuse whatever they have access to.  

Diana

I thank God and my pain clinic for opioids. I had breast cancer surgery 4+ years ago and have been in pain ever since. This is not a rare problem for breast cancer survivors as the surgeons frequently cut the wrong nerves, too many nerves, and life is never the same. I’ve been on about the same level of dosage for the last 2 years and although I am still in pain, it is not the excruciating pain that leaves one humped up in bed in a dark room. I do not need to increase my dose as this works, although not 100%, I can live with it.. If I did not have this medication, I think I would die. I had that excruciating pain in the beginning and I don’t know how anybody lives with that. These pompous, strutting, arrogant congress critters can’t stop heroin so they go after us? That’s just so wrong. I will find your group and watch my state. Many thanks!

Judie Plumley

If you want to join a state pain advocacy group on FB search for your state name and add Pain Advocacy Group C-50.
If you want to join a Don’t Punish Pain Rally Group, search for Don’t Punish Pain, and add your state. There are also links to the national C-50 as well as Don’t Punish Pain.
There are also groups for Kratom. Kratom Consumer Advocacy and Support is an AKA sponsored group.

Thanks for all your kind words. We are going to make it through this.

Darla Bennett

Hello just a short note. There’s nothing worse than living with pain every day and night. I was on opioids 5 years for pain. As time passed I found they wasn’t working as they should so Dr and I agreed rising mg and quantity each day. When I looked in the mirror I didn’t recognize myself anymore. My skin color was splotchy and red, eyes were disarrayed and was aging drastically. My decision was to ween myself off with Dr’s help. The withdrawal pain was excruciating for days, nights, weeks. To make a long story short I’m still with pain but it’s getting better because I’m taking my own money and purchasing CBD tincture oil that seems to be helping. The cost of this is outrageously high. I’m a single elderly woman living on a monthly check and I have to budget to the dollar each month. So don’t know how long I’ll be able to do this.
Thank you. Darla

Holly

Judie, your words are just what I needed this morning! Thank you so very much.

You see, I wake up every morning, and get my coffee and sit in my recliner and cry. I cry for ALL of us that we are now living in a country that completely discriminates us! I am still in shock that this is happening and is allowed to go on based on so many lies and exagerations.

I do all I can, I write, I call and retweet, and share. I thank God there are others in pain that can do more than I can! .

I pray that there be a change soon.

Thank you again for this article. God bless you!

Signe Topai

Judie Thank you for your encouraging post. It’s important to not lose steam after September’s rally. For me, I did what I could and at times had to think outside the box to continue the fight . For example, being on a fixed teacher’s disability, I could not donate money for the new chronic pain movie. Instead I sent the post to everyone in my mailbox with a statement from me. That same day I was happy to see many contributions.
Secondly, my daughter made me flyers for the rally and I pasted them out to several different places. My daughter and our friends attended the rally in Denver. There was only about thirty people due to low advertising. My daughter who works in marketing will due the advertising next year. I feel it is important for pain warriors to think outside the box and get family and friends involved.
I am determined to continue the fight! Thanks for reminding us we still can be involved even after the excitement of September 18. Be well!

billy Andrews

Judie… Thank you for your efforts.I see by your references to twelve-step programs that you are probably familiar with emotional,as well as physical pain.Quite the quinella this life has given us.I try to comfort those affected by the recent inequities inflicted by our government [the random restrictions on opiods] by suggesting a spiritual approach to the whole intrusion.
Not only has asking a Power Greater than myself kept me sober for many years,but has also helped to deal with a great deal of ongoing pain.Prayer hasn’t healed me,but it really has helped deal with my conditions.To those who scoff; You have nothing to lose by giving it a try.
Bless us all.
Billy

Jan Fulton

How do I find the group to join in my state?

Jan Fulton

How do I find the chapter in my state? I want to join my group in Texas