In the first two posts-I not so subtly pointed out what I see as many of the biggest issues in the CPP community.
I could write a freakin novel about the problems.
I’m not going to though.
We need solutions.
We need to ALL work together.
We-as in ALL of us-need to get our collective sh*t together.
WE need to come up with a coherent,fact based,intelligently worded message.
If we don’t,no politician,no .gov agency head/mgt is going to pay any attention whatsoever to us.
I get that it’s hard to do on Twitter-due to 240 character limit,Farcebook ain’t much better.
There are a metric f*ckton of advocacy groups on Twitter/Farcebook.
None of us/them have a coherent,concisely worded,fact based message.
Everyone is all over the place-just throwing random sh*t against the wall to see if it sticks.
We appear unhinged to those who don’t understand what’s being done to us.
There are some very intelligent-even brilliant- people advocating for CPP’s.
The best of them/us realize that addiction treatment is tied into pain tx.
Not our fault-we know they’re two separate issues.
However… we need to team up and work together-which includes kratom advocates,and medical marijuana advocates-even though SOME from both groups claim their preferred tx curbs “opioid abuse”.
Educate them.
Arm yourselves with facts,links to CREDIBLE sources/studies.
Anyone who has the time to put together a list of studies/sources that support treating chronic pain with long term opioids-send it to me-GamegetterII@yahoo.com, or DM @StarvinLarry
Anyone who advocates for CPP’s,Addiction tx,kratom,or MMJ who wants to write posts for this blog-contact me,and I’ll make you a contributor,and you can post what you feel is relevant.
Can we please all work together on getting our message out in a way that those who do not understand chronic pain/chronic illness/addiction can understand?
Sad to say-but think of it as explaining these things to a toddler.
WE have to do this,or… we are gonna lose.
Think of it like this-there are more of us who suffer from chronic pain/chronic illness/intractable pain than there are .gov and medical community hacks like Kolodny/PROP(aganda)
WE have more time to put into this. They work 8 hour days-over half of us can’t sleep…
Check twitter at 3-4am if you don’t believe me.
We know our bodies,our pain,the years-or decades of failed tx prior to LTOT.
Many of us were stable on our meds,no addiction,no abuse for decades-now it’s “OMG-Heroin pills” “Go to hospital for broken arm-come out an addict”
“Tough it out and take Bufferin”
WE know these claims are pure,unadulterated male bovine excrement-we’ve all refuted them with facts.
Everytime some .gov agency hack,so-called “Dr” (yeah Mr. what are you gonna do next channel Carrie Nation and start chopping up Dr’s desks with a hatchet Kolodny-that meant you), politician,or community leader starts spewing the aforementioned excrement-blast them with facts-and links to credible sources/studies.
Political advocacy matters-and is effective-but…
We,as in ALL of us,have to leave the left/right,Hillary is corrupt,Trump is Hitler nonsense out of it.
I leave it out of pain threads-I have followers-and I follow them who are 100% opposite on politics-and gun rights-and on and on.
WE all have to leave the political horsepucky,the outrage,the personal beliefs,the religious beliefs,the you own guns-you want dead kids nonsense out of this.
Political advocacy works-but…
It takes big numbers-we have to have a lot of people-
The D.C. swamp dwellers won’t pay any attention unless the group being represented is in high hundreds of thousands – minimum.
We win this war by winning the small,winnable battles first.
We are not going to get all this opioid hysteria nonsense reversed in one shot-ain’t gonna happen.
Start at local and state level.
That’s how you get sh*t changed at fed level.
Doesn’t mean don’t try at fed level though-the more local and state support we get = more pressure on feds.
We can do this-we can win,it is in fact a war-wars are won by picking your battles,picking the time and place of your battles…and by using insurgent style tactics.
We have to hit them back harder-with facts,with numbers,more often,from more people.
Get inside their OODA loop – Google it 🙂
That is all for now.
Hope ya’ll are having a low pain day.
@StarvinLarry
The War On Chronic Pain Patients 
Starvin Larry wrote this a month ago and……. Have things changed?? I’ll follow you Starvin Larry! Lead the way! I’ve been saying this on every tiny page I’ve been to since I started looking for a place to fight and join together and grow our numbers and all I hear is why we can’t join together! And I think…. We’re gonna lose because of agendas and personalities and egos and stupidity. Tell me where to sign up Larry. I’m with you!
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Starvin Larry wrote this a month ago and……. Have things changed?? I’ll follow you Starvin Larry! Lead the way! I’ve been saying this on every tiny page I’ve been to since I started looking for a place to fight and join together and grow our numbers and all I hear is why we can’t join together! And I think…. We’re gonna lose because of agendas and personalities and egos and stupidity. Tell me where to sign up Larry. I’m with you!
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I have Fibromyalgia 22 years. I fell on ice pregnant. I injured my shoulder. And after I gave birth to my son my life spiraled. Pain traveling all over my body. I was at the Dr. often. It took a year to find out what I had. Fibromyalgia and Oseto Arthritis. I was given medication. It still did not stop my pain. It still traveled all over. Always tired and in pain. I had to raise a son like this. I missed out on a lot with my son. But I did the best I could. I had it chronic. Then 10 years later the disc problems started. I had to get nerve root blocker. And shots on both sides of my neck. And arm 3 x. It helped for a few years. Then 5 years later my back again. I was treated well in New York. I had pain medication that I took as needed. It was not working the one to two every four hours in flare. I called Dr. he said take another. It did not help. I called Dr. again he said up it. I went to hospital. They gave me shot and medication. I had L2 L3 L4 L5 Disc injured. Cervical facet, Band Syndrome. As well as Lumbago radicular pin radiates in lower back, Spinal nerve root caused by compression, Shoulders have tendenitis, Displacement of cervical interverbral disc. Myalgia. I was on a Muscle Relaxer, Autoimmune, and Tramadol. Before I moved to another State I got a bakers cyst in left leg and a tear in right. I was on Hydrocodone. I moved to another State they would not give me scripts for medications I was on and changed it. And no pain medication. I was in agony. I slipped my disc 6 times in one year. And had shots that did not work. Epidural, Branch blocker, Nerve burn. It took 1 yr and a few months to finally work. But I still have pain with Fibromyalgia and arthritis. I can not take every day because of other problems i got from shots and autoimmune medication. So I am in constant pain. I need help here. My Pain Dr. moved to another State to a different field of medicine. I found another Dr. will only give shots. So what a i to do? Live the rest of my life in chronic pain?
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All’s I know this shouldn’t be all about government, politic,blahh blahh.It should be ,understood and listen 2 the people that suffer.Not everyone a addict.Why should people on earth.Live a hellish life in pain cause of the addicts out thier.talk about all the stuff in long term .well here’s short .where’s human compassion,?For the people,suffer because others.wheres are human right?in the hands of the government. What it was thier family thier loved ones suffering.you ask me it is a bunch of ,people in a top position playing with are well being.Why the go merrily on thier way enjoying day 2 day life.keep it real.my feeling ,
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Reblogged this on CFS-ME-River's-Edge and commented:
We’re at the river’s edge…. And we will sick or swim on our solidified numbers only.
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Larry,
Just food for thought. Throughout the last ten years or so while being treated for Chronic Regional Pain Syndrome I have noticed people, the general public do not know what opioids are. They do not realise when they had that tooth pulled or broke their arm or had a surgery that their doctor put them on an opioid based prescription. Today, there may be a little more recognition in the term opioid but with little understanding. We should keep in mind the audiance.
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I am trying to promote legislation for pain research in general and research for non-addictive alternatives to opioids. There are two colliding emergencies that need to be addressed immediately: abuse of opioids for illegal, non-medical use and under-treated pain by limiting access to opioids. I just talked to my Representative’s office yesterday. My last blog post was about that if you want to check it out. You are right. People need to be informed and intelligently speak out, or we are going to be left behind with no alternative to opioids for pain.
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I have no problem with research in non opioid treatment for those who wish to try it but never let it interfere with opioid treatment which is absolutely the safest from of treatment when used responsibly. Nobody should suffer needlessly just to protect junkies from their own stupidity. And junkies have a right to put whatever substance they choose in THEIR BODY as long as they only hurt themselves. All people should have access for whatever reason they need it for. Nobody should suffer.
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I believe if the opioid is the best option for the patient it should be prescribed with common sense. Research is needed to find alternatives that actually work. Until then, I’m with you that opioids should not be taken away because, for many people, it is the only thing they have that works. Most do not have access to expensive alternative treatments that are not covered by insurance. The insurance coverage is another issue that needs to be worked out. The real addicts are being treated like royalty and we are treated like lying addicted thieving addicts, all of which, we are not.
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