How To Unite The Pain Community? —Think About Coalitions

How To Unite The Pain Community? —Think About Coalitions

Friends in the kratom and marijuana and pain communities please hear me out. We are all fighting for our lives. It’s time to come together and fight back. Many of us can’t get out due to disability. Many of you in the marijuana community and the kratom community use both of these substances as a medicine for pain, mental health and overall general well being. We would be so much stronger together!!!

For years now I’ve been trying to figure out a way for us to do just that. The only way I can see to do that is simply just to ask. It’s time to set aside all are differences now before it’s too late. Already I have made a move to help put an end to this madness. Now its time for action. No more talking about it it’s time to be about it.

Many of you don’t see the connection or maybe you’re anti opioids or anti marijuana or anti kratom. Im here to tell you that that’s discrimination. We all are trying our best to just find relief by whatever means are available. While we’re busy arguing over who did what we are losing more rights and more lives every day.

Marguerite Martin II

It’s that simple we come together but I need all your help. You see I belong to all three communities and I’m hoping that you will help me build 1 community because there are strength in numbers! We need each other. Many of you might not see it that way but it’s true.

I know many of you are concerned about the addiction issue, as a recovered addict I completely understand. Active addiction is a part of some of our stories. We are just everyday people looking to make our way in society that has shut us out. We all need to work to make these issues that addiction carries disappear.

If you want to be a part of growing this community please comment with your name and share.

Marguerite Martin lives in Western Washington, She has Osteoarthritis, Fibromyalgia, Degenerative Disc Disease, Failed multi-level cervical spine surgery failure, Spondolylothesis, Spina Bifida Occulta and bi lateral drop foot. Most of my friends call me Maggi and in my spare time I like to dabble with skin care and cosmetics. Most days though are spent in her pajamas stricken with exhaustion and intractable pain.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Marguerite Martin II

Marguerite Martin lives in Western Washington, She has Osteoarthritis, Fibromyalgia, Degenerative Disc Disease, Failed multi-level cervical spine surgery failure, Spondolylothesis, Spina Bifida Occulta and bi lateral drop foot. Most of my friends call me Maggi and in my spare time I like to dabble with skin care and cosmetics. Most days though are spent in her pajamas stricken with exhaustion and intractable pain.

55
Leave a Reply

2000
55 Comment threads
0 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
51 Comment authors
  Subscribe  
newest oldest
Notify of
Heather

I have been given advice from doctors who have no role in my pain care, telling me to be prepared to have to wean off of TRAMADOL. It is absurd! My dentist tells me that he knows someone who can treat me with medical marijuana. I am allergic to sunflower oil, coconut oil and palm kernel oil, and from what I understand, olive oil is not the most effective emulsifier. I am soon to be checked for autoimmune disorders that hopefully would explain my multiple food allergies (some anaphylactic).

My options are limited.

The real kick in the teeth was the pulmonology practice that accused me of being “addicted to prednisone” and I found this out during an (allergic) asthma attack… I explained I was in an environment with 7 cats and gasped on the phone for 40 minutes and was close to passing out when they tossed that nugget at me. I was out of town and it was a weekend so I was on with the on call doctor who read my file. I sat near an air cleaner or hid in the bedroom for my whole visit. Upon returning, the practice denied me a re-evaluation that was ordered by another physician.

I am seeing a psychologist for what I believe is PTSD from denial of medical care over the years. I have fibromyalgia and widespread osteoarthritis. I have difficulties preparing for medical appointments now because of fear of not being believed.

I will find you on Facebook.

She Battles Cancer

Hello, I was diagnoised with Breast Cancer in August of 2013. Invasive Ductal Carcinoma and Triple Negative Breast Cancer. I also have Rheumatoid Arthritis and Degenerative Disc Disease just to name a few.
If that wasn’t enough, 2 months later I was diagnoised with Stage 4 Metastatic Lung Cancer at the age of 47. The doctors said I’m terminally ill.
My Pallatitive care doctor treated my pain with Opioids for 6 years. Then one day she decides that my pain meds are causing my pain. I’ve been in excruciating pain since they weaned me off the opioids. I wouldn’t wish the withdrawal on anyone. ‘Im hurt, disappointed, depressed and worried about my life. I tried others medications without much success. Some even had drug interactions or side effects
I dont know what to do. I’m considering going off all the meds so that i can take a natural supplement for my pain because its becoming unberable. Some days I can barley walk.
I’m spending more days in bed due to the pain and suffering from my Cancer and other illnesses.
I don’t know how long I have to live. I do know I don’t want to suffer from Excruciating Pain everyday until my death.

My heart breaks for Maggie because I undrstand how she feels.
So, i’m all for us joining together and i’d appreciate any advice from other people than understand what I’m going through.
I’m currently taking Gabapentin 800 mg 3xs a day and applying Lidocaine 5 percent patches for Neuropathy.
I sincerely Hope we find something to make the pain stop for all of us real soon.
Thank you at National.Pain Report for giving us such great information, stories and an outlet for us to tell others how we feel.

Glen A Cooper

I have posted this many times. We are citizens who are presumed innocent. Using opiates is not “probable cause” for illegal searches. I can understand employee tests for pilots and bus drivers. If a citizens is no danger to anyone else they should get whatever medication that works for them. PERIOD. We should determine our risks and benefits and be responsible for our children. Parents blame opiates when their kid overdoses. Guns get blamed when a kid shoots up a school. Neither drugs nor opiates need any more regulations. We need to enforce the Constitution and Civil Rights. MADD is mothers against drunk driving but it also should stand for Mothers Against Dumb Doctors. Hypocratic oath “DO NO HARM” should consider the harm of cutting opiates. Everyone should ask their doctor if He knows the Constitutional right we should have for pain treatment. If they do not prescribe, send this American in pain to a Doctor that will.

Glen A Cooper

Marguerite Martin. Greetings Marquerite. I don’t think the moderators here want names and contact information. With the thousands of unhappy pain patients you would think they could be organized. Those sorts of effort seem to be blocked. That goes for Congressional and Public media. We can surely find other sites but as you probably noticed most searches go to anti-opiate sites. They imply that all users want to be saved. Thousands of Doctors support the need for opiates but you are usually directed away from them. It IS a national conspiracy to blame prescribed drugs for a national crisis. This is happening and will continue. There will always be addicts, overdoses, and black market sales. These restrictions hurt only law abiding citizens and boost illegal markets. People got rich with prohibition of alcohol and as long as there is demand drugs will be smuggled and government will spend our taxes trying to legislate morality and putting non violent Americans in jail. They would do better to group opiates as recreational drugs like alcohol. Junkies can go to the store for drugs instead of breaking into your house and stealing money, drugs and your guns. Drugs have great value because they are illegal.

dismay

The criminalization of opiates and cocaine date back to 1914 and 1915, acts of treasury. In addiction to keeping Chinese and Caribbean people out of the the white male work force; the alcohol industry was the backbone of US economy in Colonial times. When rum started getting imported from the Caribbean, the monopoly of US alcoholic beverages suffered. The lobby remains immensely powerful despite lessening sales and profits. Treasury was the active operation here. Alcohol and tobacco are super addicting and dangerous: you do not here about them getting criminalized now do you? That did not work: suffrage. There were racist motives, as well as many other unstated implicit reasons for keeping opiates and other drugs illegal in America. It boils down to money, and to who shall live and who shall die. Lions are starving today because human beings eat so much meat. Everyone cannot live. There are not enough resources. People seem to lack the stomach for consciously deciding who to kill. Those that can, do; and with financial resources to carry it off, they are not straightforward about how decisions are put into effect and cooperation achieved. This stuff is not for public consumption.
This does not mean pain patients and their advocates cannot achieve the smaller goal of getting their specific needs met. This finite mission has far more potential than any systemic model involving anyone but pain patients who are dying as a result of the misunderstandings of pain and addiction. Keep the mission very targeted, finite. This optimizes success I believe.

Brooke Kucera

My name is Brooke and I am originally from Eastern Washington. I went to EWU, got a Masters degree in Mental Health and Substance Abuse counseling. One year after I earned my degree I got sick and never got better. That was over 10 years ago. I am now 42 and I live in Arizona. I am a HUGE advocate for chronic illness. I myself use mostly medical marijuana, but honestly I have to use prescriptions as well. I believe as you do….we ALL need to stick together. What works for one person might not work for someone else. Its biology. We all deserve the right to use the medication of our choice. I have Sjogrens, Ankylosing Spondylitis, Fibromyalgia, Gastroparesis, Functional Dyspepsia, Occipital Neuralgia, Scleritis (my arthritis attacked my eye on Jan 2 and it has been the worst pain that has been CONSTANT for almost a month now), Scleroderma, Hemipelegic migraine (also 3 other migraine types), and more. Living in my body is hell and I just want everyone to be able to use whatever means they need to have some quality of life. I too have battled addiction. I would love to help with whatever I can. God bless!!!

Maggi Martin

I am so relieved to see such great responses. Ive had a few tags on Facebook putting the idea down because some people don’t understand that chronic pain has already been redefined as an addiction. Until we all come together and lobby for our rights we will continue to go downhill and die. It’s really a matter of life and death and has been for sometime.

For me personally I have had great success taking marijuana for my severe anxiety and PTSD. For pain I am undertreated so I take kratom for breakthrough pain. Many people will disagree with me on it working out but they do not cancel each other out like some would think.

I am working on building this coalition and would appreciate you finding me on Facebook so I can add your names to a slow growing list, unless we can be absorbed into one of the communities. All I know is the kratom and marijuana communities are some of the most kindest caring people I’ve ever known.

Once we join forces we can create change that change will include redefining chronic pain from how it’s defined now, as a bio/psycho/social issue back to a serious disease that kills.

Sincerely,
Maggi Martin

dismay

Linda May, again. I had some further thoughts. I mentioned Mothers Against Drunk Driving in my last post. My master’s is in social policy. It may be helpful to specify MADD’s strategy. It was multifaceted. It included speakers in communities throughout the United States. Pain patients need to tell their stories in churches, schools, community centers and they need help doing this effectively. No express anger! Lawyers and lobbyists are needed at the level of every state and county; people must have printed literature to hand out filled with relevant information expressed in accessible language. Cool, calm , informative, from the heart. The specific legislation desired must be clearly developed and articulated. People with chronic pain need support getting to places to tell their stories and home again. They need support getting educated about policy, government and democratic processes. The average reading level in the US is 5th grade. Over 80% of Americans spend most of their leisure time watching television; gotta stop. People need reading classes and television should be avoided rigorously. It is the worst thing for the mind. Community and meditation will build up the mind. Chronic pain increases dementia risk exponentially. I agree that prominent public personalities are needed to advocate nationally. OUR attention should be RIVETED to what is good about people, what we like and admire. Those who cause harm should simply be ignored. They do not exist. Failure to reinforce unwanted behavior is the most effective way to extinguish it. Attitude: unwanted behaviors, words; “what behavior, what words?” Address and attend to the divine in each person.
I will commit my time to speaking about the meta-analysis of pain as a terminal illness when asked.
After I am finished writing it ; )

dismay

Hello, I am Linda May. I am a psychotherapist specializing in the treatment of addiction. I have chronic pain and oxycodone is the only medication that covers my pain. Since the CDC manipulation and DEA assaults my pain has not been covered. I have multiple medical conditions; but I also have unusual properties that both make my pain harder to treat, restrict types of medications I can take, and make my pain harder to treat. I am a redhead. Redheads are mutants, less that 2% of the population. No medications are double blind control tested on redheads. Since we are so few, very little research about this mutation exists. I have letters from my dermatologist and my gastroenterologist regarding some features of these issues. I have known since my dosage was cut in half that it was killing me. That chronic pain is designed to kill people. It is to remove us from the human race so as to promote the survival of the species. Very Darwinian. Recently I came across research that confirms the disease nature of chronic pain. Indeed, it is similar to complex developmental trauma in it symptoms. Learning that chronic pain carries with it a 70% increased likelihood of dying is ….well, to each your own reaction. I have read many of your stories; like my own, everything in your life, your health, your professional function, your relationships shredded.This research has been suppressed of course. I will not hold forth on that subject. I will gladly contribute what I can to coalition building. I will provide a meta-analysis of the research. As a psychotherapist working with empirically validated structures of implicit cognition I can offer advice on best self-care strategies. I am open to hearing what else might be wanted. I agree fully that we need to organize and do so in a sophisticated, effective fashion. MADD developed the best model I know of. Lawhearn strikes me as very effective.
Thank you for your suggestion. I hope it bears fruit.

Jen

Also in Western Washington. I haven’t had a Dr or prescription for any meds for at least 5 years.

I would like to connect with people in my area, and at least find a Dr to renew my anti-inflammatory meds…

I use THC-free CBD balm for the only relief I get. I’ve tried kratom, but it’s too expensive to take as much as I need regularly.

Cynthia Antonucci

I’m totally with you on this issue. Chronic pain is almost impossible to live with. Those of us that are in this category need all of the help we can get. We want legitimate help. Too many scams want our business. Unfortunately many things available aren’t really helpful. I’m interested in your ideas. Both my daughter and I are in pain constantly. So many reasons for how we are. Too much to explain here. Please contact me. Prayers for you to be able to get the relief you need.

Pamela Marrache

I’m very open to your idea. There’s strength in numbers. I’m unfortunately in a state where marijuana and kratom are illegal. I would love to have it changed. I’m not addicted nor ever been but I have been ripped off all opiods I had been on for 17 years. I’m an advocate for ANYTHING that will help our chronic pain.

Ann Sable

I’m not anti-any community mentioned above. I may not smoke because it hasn’t helped me, but I do believe that everyone is different and so will be their treatments and we all deserve relief. ‘To each, their own’…respectively. Simply must stand together and fight to live or die alone.

Also, sad to even think this, but all the above is the new groove for the government as they get rid of the old/faze out pain meds completely. It’s another repeat only with a different form/regime (i.e. mj/cannabis/cbd/kratom).

This isn’t being said in any rudely manner nor should it offend in any way- what so ever. Simply stating a scary and obvious end game that so many are dreading. I honestly cannot be the only one fearing the very thing that is almost obsolete. It is very real. It is truly terrifying. It is a relentless wait and worrisome woe to many, many people.
God help us all…

Elizabeth Rogers

I’m a resident of WA State as well, and I agree that there is strength in numbers. I have no experience with kratom, and marijuana has not been helpful in the past. However, the underlying issue is the same for all of us: pain. We need to join forces so that we cannot continue to be shut out of medical decisions made for us by others. These decisions control our very lives–in some cases, whether or not our life goes on.

I’ve said before and will say again that it would really help our cause to have a high-profile supporter step up–preferably someone who walks/has walked in our shoes. We need someone who will be able to present the plight of chronic pain patients in a way that attracts media attention and positive publicity. We need to be able to counteract “opioid crisis” news reports that overwhelmingly emphasize bereft parents who have lost a child and distraught 20-somethings who have lost friends. Of course(!), it’s tragic when young people overdose on heroin/fentanyl and die, but that has little, if anything, to do with us.

Members of the pain community know that responsible use of prescribed medication by patients with long-term, incurable pain, monitored by a licensed physician, is a completely separate issue from drug addiction. Pain patients are not criminals although we may be viewed and dismissed as such. Long-term pain patients, many of whom are older adults with medical conditions that currently CANNOT be cured, did not create the “opioid crisis”, but we are certainly turning out to be the collateral damage left in its wake.

Walter Strickland

Hi Maggi.,I very much appreciate this article and outcry to all of us who are suffering with chronic pain that cannot be cured as of now.I have in my neck degenerative disc desiese at the c3 , c4,. c5, and c6 vertebrae from a terrible wreck I was in in April of 1972 and it gets worse every year.I had a neurosurgeon do a decopresion of my spinal cord last June and I literally had to bed for anything at all for pain, I was finally giving 1-cc or morphine and that was it untill I was released from the hospital 30 hrs after the surgery.I in more pain now after the decompression surgery but I had it done. As I was afraid to be paralyzed.They did remove the top part of each of these vertibrae.I discussed having the degerative disc but the neorosurgeon suggested I wait until it was absolutely needed , well it is absolutely needed but as explained to me I will loose most of my range of motion and with all the needed hardware my pain level is very likely to increase.Then I have a wreck in March of 2016 that makes my neck condition worse and had a closed head injury and inlured my lower back.so far all that works for me to just get by is what little opiod medication s I am able to get.But I am open to dicussions about other medications that may work as good and maybe even better.You can count me in to help wherever I can .

Lori

I agree.pharmacist Steve has been saying just that for yrs now. All the pain groups have to come together to be productive.First thing would be to clear up all the govt lies about opioid pain meds and educate everyone. I know we shouldn’t have to but apparently our govt is signing things they know nothing about except more votes coming in for them if they do sign! Then the follow the leader,blindly game…

Grace Lonas

Having CRPS is also unbearable and most days are stuck in bed. I am doing as much as possible to try and not focus on my pain (yeah right) so I can force a smile.

Dave2

On the other hand all of the major groups today; Don’t Punish Pain Rally, Alliance for the Treatment of Intractable Pain, Coalition of 50 States Advocacy, Chronic Illness Advocacy & Awareness Group and others, including individual Doctors and Advocates, all contribute in unique and necessary ways.

ONE Group would still require one Lead Advocate or a Panel of Members AGREEING to vote and move forward IN AGREEMENT on the next best move for the effort to recover Opiates.

Efforts to include recovery of Kratom and Marijuana I feel must reduce the effectiveness of the soonest recovery of Opiates. One final method appears to be the effort to LEGALIZE EVERYTHING and END PROHIBITIONS of popular substances.

Thomas Wayne Kidd

I wholeheartedly agree that we must stand together or die separately.

Sue

We need to do something. I am in excruciating pain and if I don’t have relief from my very minimal opioids, I’d rather be dead.

Lisa

I also have fibro, DDD, failed cervical fusion which has caused scoliosis and has actually reversed my cervical curve, and I am home bound as well due to pain. I have often thought, there are so many of us suffering but we cant get out to rally’s, we need to come up with a way to rally online and really make an impact and get noticed. I just havent figured out how we can do that yet.

Maria Pacheco

Maria Pacheco

Stephanie King

Stephanie King, here. I agree completely.

Deborah L Molitor

I totally agree and I have so many painful Diseases and I’m in multi organ failures . I Live in so much pain and there trying to push me into Hospice but I have to leave my Home to do so. I am living with Chiari Malformation and Spedo Tumor Ceberi .. DDD severe canal Stenious spondylousis ex ex and 5 other spinal diseases and I can’t have injections nor take Motrin or Tylenol due to liver and kidney failure. My body can’t take one more week of this and the pain clinic said NO ONE needs more then 10mg oxycodone 🙁 I will join Your community and share this all over.

Amen !

We are all in the same boat – just different types of life jackets and many with no life jacket.

Let’s stop making excuses and get on with the action.

Shara El

Id love to join a coalition. Im a chronic back pain, fibro patient and have an autonomic nervois system disorder which is overstimulating and causes much anxiety. Im dreading my next pain management appt because I know he making people taper. Im on a low dose of pain med that barely keeps me functional, so Im going to be harmed and more housebound than I already am. Id love to try alternatives but have no income for it. Since I cant get out and about much, Id love to connect with a coalition.

Cindy R

Maggi, I agree! We all need to support each other, no matter what we use for relief. Since most of us are simply not able to get out and around to protest or cajole in person, letters and phone calls are our best hope, I think. As someone said in a post earlier this week, doing this weekly will have an effect, eventually.
I am originally from Western WA, now living a couple states south of there where the air is drier and warmer, and also like to play with skincare and cosmetics.

Dawn Witek

My name is Dawn and I am from Milwaukee, Wisconsin. I have disc problems with my lower back and multiple disc problems in my neck. I have constant severe pain and the pain worsens when I sit, stand, walk or when I even lay down. The Pain meds was the only relief I ever got. But now they took half of them away.

This absolutely has to happen. The human body has 3 kinds of receptors built in it for the morphine found in poppy sap, and two kinds for THC and CBD. Kratom affects only 2 kinds of morphine receptor but not the third.

Companies that are dishonest; have lied about some drugs to make their own drugs look better. Such dishonest companies seem to havr ganged up to push Suboxone and unregulated stuff they call CBD that often is not really CBD. They get away with this by making consumers fearful of opioids to distract us from the truth.

Since our bodies are designed to use these substances medicinally, consumers need to demand honesty from people who pretend to speak for us. Kratom and poppy sap are both very useful for pain. Cannabis is very useful for spasms and nausea., and appears to have major benefits for epilepsy and ADHD. We consumers should demand that businesses who sell drugs admit these truths. We must end the political spending to force us not to use the drugs we need.

Dee Giles

This is an excellent idea! We HAVE GOT to stop all of the in-fighting and come together if we are ever going to regain our rights and save our lives. The government and the anti-opioid zealots have already written us off as expendable and our lack of coordination firs right in to their plan!

Cindy too

I had no idea that such schisms exist.
It’s beyond awful.
It makes absolutely no sense.
What is wrong with people?

I understand your frustration. I started my website, the Alternative Pain Treatment Directory at http://www.paintreatmentdirectory.com to educate pain patients about all treatment strategies Traffic and interest in my newsletter is very slow to build .Four years ago I started a petition on change.org at thttps://www.change.org/p/president-trump-and-congress-make-sure-that-the-100-milion-americans-in-chronic-pain-can-get-safe-effective-care to get the federal government to require coverage of all pain treatments. It still has only 3,893 signatures despite multiple promotions. Providers are also very slow to sign on to my multidisciplinary platform.

Michael Kastner

Marguerite. You are so knowledgeable about the strength in numbers and absolutely correct. Together we stand, divided we fall! We cannot afford to fall! We are past the point of needing the strength in numbers. We must act now. “They” have taken medication from too many already, causing extreme pain and suicide. Please tell me how to help you in your efforts to unite us against “them”

Michael Kastner

Renee'

I live in Eastern Washington and I would like to unite

Alesia

Thank you for stating the obvious! Oh, I used to go somewhere every single day from the day I could drive. Nowadays, I can’t get out and go…it hurts to drive. The local bus service is wonderful except i have to call 24 hours ahead of time to get a ride. I cancel because I don’t feel able to get to the place, shop, then call for bus and wait up to 90 minutes or more..sometimes less, to go home.
Those of us who are in PAIN cannot just go. Getting to my doctor is quite enough to suffer through. At least I can have labs and flu shots at his office. That helps a lot.
Thanks again for addressing this BASIC problem, as well as discussing the ideas of coalitions!

Deborah M Babcock

My name is deborah and I would love to get more people in this group..i have been in chronic pain for many years now. I have migraines ,buldging disks in my back, bursitis in my hips , my whole body has these pains that shoot through feeling like my whole electrical system is on fire with pain. Diabetic pain,restless leg pain,insomnia due to not sleeping well because of pain..I have developed something wrong with my right elbow now it’s very painful and I dont have full function of my arm..I’m afraid to go to the dr anymore reguarding any pain issues. I get treated like an addict and lied to so its very frustrating..I’m not suppose to take ibuprophen of any kind and limit tylenol use do to my damaged liver. I tried feco it worked ok till I was given a bad batch a0nd sent me to the hospital now afraid to try again..I dont want to get high but I need to be out of pain sometimes..I’m stuck and dont know how to approach my NP again on these issues..my quality of life is being diminished day by day it seems..I do know one thing for sure is that drug addicts will always find their fix there will always be overdoses in the addict communities all the while we pain patients are suffering ! There will be a time when there will be more people committing suicide due to pain than there is overdoses from drug addicts !! If this isn’t already true now..we need to keep up the good fight and prevail

Barbara M Maidment

I’m 64, and struggled for years with Degenerative Disc Disease, have had 9 spine surgeries, including 4 fusions-3 multi-level cervical fusions and 1 lumbar fusion. I also have osteoarthritis, knees that have needed replacement for 14+ years (left knee was replaced in 2018; Rt knee is still wreaking havoc on my quality of life), fibromyalgia, severe, painful chronic muscle spasms extending from my neck and shoulders all the way down my back. Currently, I have a bad case of tendonitis of my right elbow (tennis elbow) from leaning too hard on my cane, due to my rt, knee pain.

I have also recently been diagnosed with both LIPEDEMA and LYMPHEDEMA, as a result of being a 19 year breast cancer survivor. Lipedema has been a constant struggle for about the past 25 years, and has been unrecognized and UNDIAGNOSED by western medicine practitioners for all those years–Docs said, “You eat too much!” when they looked at the size of my legs/arms, which were, in reality, abnormal fat deposits caused by imbalanced hormones in my late 30’s and early 40’s as a result of pre-menopause…and excessive estrogen (my breast cancer was estrogen-fed). I have never over-eaten in my life, nor do I binge-eat.

During knee replacement surgery in April 2018, L3-4 and L4-5 ruptured from the manipulation to implant the prosthetic knee, a “revision prosthesis”, larger prosthesis. I flew to Colorado, stayed for 11 months, searched for a neurosurgeon to repair my spine. During 8 months of severe pain, my body adapted to the pain with nausea/vomiting; anemic, I lost 70 lbs. Underwent a cervical and a lumbar fusion; the lumbar incision became infected, requiring cleanout surgery. Was sent to rehab for 6 weeks, half of which I was overdosed with IV Vancomycin, and have suffered since day 1 with lymphedema, inability to sleep > 2 1/2 hours/24 hours, balance issues, and pain. Quality of life is nil.

Loretta

I have been suffering with Osteoarthritis, Fibromyalgia, Failed back surgery, and now tears in my shoulder. The only way I have some kind of life is with the help of opioids. I take my meds as required, I do not feel I am an addict, just a 59 year old woman trying not to be dead yet!

Denise Bault

I agree, Maggi! For those of us in chronic pain, relief is really all we want. If in order to get rid of our pain a doctor told us to hop around on one foot, cluck like a chicken and eat doggie doo doo, we’d all be hopping, clucking and asking for a spoon! Not everything works for everybody. And there is strength in numbers. Count me in!

Kris Aaron

Sign me up!! I’m willing to work with just about anyone to get our opiate prescriptions back… along with our lives.

Dave2

There probably where never two more natural enemies than opiates and kratom/marijuana, …and the opiate haters figured it out and we haven’t.

It’s ok, in addition to the mileage opiate haters get for their various election and funding efforts, where will all of these, including Doctors that so easily bent to the false narrative, look when we get somewhere with opiates? But the opiate/kratom/marijuana combiners will cause the effort to restore opiates to fail. So there is no need to worry.

We at CIAAG have many coalition partners both publicly and private. We work with Advocacy Group. Political Action Groups & disease funds and We met monthly for coalition calls (hosted by ciaag) to collaborate, strategize and discuss coordinated actions to help raise our voices in DC and raise awareness in the public sphere. We welcome anyone who would like to participate! Just email us at info@ciaag.net and check out our website to see some of our partners, activities & our 2020 Advocacy Goals.

Helene DiPonzio

I am right there with you! I actually use opiates and kratom. I started using kratom because they cut my pain prescription to such a low dose it wasn’t doing much of anything. So I supplement with the kratom. I agree with you on everything you said. We need to work together as a pain community.

First let me send my condolences for all the suffering you must endure, Maggi.
I agree with you about uniting & strength in numbers. For us suffering, I’m not anti- Anything … just trying to get thru each day with the will to live, to preservere with high intractable pain & to try to carve some kind of quality of life within this disease of isolation. Regards, Lori

Victoria L Whitem

Hello Marguerite , I have been suffering with Cyclic Vomiting Syndrome for 37years. I also have degenerative disease disorder , Fibromyalgia , Rheumatoid Arthritis , and Severe anxiety disorder . I can’t get any of the medication that you mentioned and I just have to suffer through it . Thank you for sharing your story.

Sherrie Stone

Sherrie Stone i want to be a part of this

Claudia Webber

Maggi..GREAT JOB! SO TRUE!! WE ARE ALL IN THIS BOAT TOGETHER! STRENGTH IN NOS.! I AGREE 100%!!

Carolyn Robinson

I’m ready… tell me what to do…

Darren Lyon

I’ve been saying all of this almost Word for word and getting nowhere.

Steven

You cannot take opiods and mj. I wish you could. I cannot make it on what my pain doctor is willing to give me. I may only have weeks to live. What was the unite plan specially? I did not catch it.