How many chronic pain advocates in the chronic pain community – are really interested in the community as a whole

We are all set up to go and advocate for a child with a government representative from the State of Tennessee. I knew these kids were something from the beginning and they were willing to fight for themselves and for us! I put the time, money, sweat, and most of all the effort in because I saw no future on our current path.These kids have been an absolute blessing to APDF and the pain community and it turns out IMHO the only ones who can save themselves and maybe us too if they don’t mind😉! These awesome kids have fought and died like a soldier to save pain patients and if that government official doesn’t take this to heart 💔 they have no intention of doing so for us. I am so proud of these kids words can’t describe what part of my heart cares more for them. An accident brought us together but fate kept it going! Although, the ridiculous attacks in the pain community are very real and vicious. I knew only the pure of heart would rule the day! This couldn’t of came at a better time as their funding was cut by nastiness in our own community, but it shows there is a plan and a future for pain patients of any size and age. On their first fight for themselves hopefully they will show us how its done and come together immediately. I have total faith in these kids from the start and knew something brought us together. I’m excited and I believe this will be a battle of all CPP battles and even if its just for the kids, I’m okay with that too! I’m an adult and we can handle what we are dished out as wrong as it seems. But its even way more wrong when it’s your baby suffering. These kids don’t fight and argue and the only fighting they do is to stay alive! My only hope is they go into this battle and fight as hard as they can for the right reason’s and that reason is no more suffering for everyone! No republicans and no democrats and no pain groups just kids who are the most deserving people on earth and maybe we will get lucky in passing! 😘 GO FIGHT WIN GUYS! ❤❤❤❤
#americanpaindisabilityfoundation #CANCERSUCKS #rarediseaseawareness #treatoursolgers ##cppkids #fightstartsnow

Tulsa mass shooter allegedly gunned down his doctor after asking for help with pain

The above incident happened about 10 days ago and one person who claims to be a chronic pain advocate made a few videos about this incident, some believed that this person stated that the doctor DESERVED TO BE SHOT,  others believed that it was implied, others stated that is was suggested.

After those videos were posted,  many in the chronic pain community basically went ballistic .. some who were chronic pain pts, some who were both chronic pain pts and healthcare providers and some who were just healthcare providers who deal with chronic pain pts.  Ir really doesn’t matter what was actually said, there is a old saying “what you perceive, is what you believe ..”

And what did this “advocate” do… stirred up the “tribe of minions” aligned with this “advocate” and they started attacking a advocate from APDF, who has been successfully advocating for pediatric chronic pain pts in Vanderbilt Hosp in Nashsville, Many of these kids are END STAGE CANCER PTS.   He even took Vanderbilt to court when Vanderbilt stated that he could not advocate for the kids…even with the parent’s agreement/consent.  Vanderbilt LOST !!!…  Vanderbilt had a “NO OPIATE POLICY” and didn’t want to change it  – even for pediatric chronic pain pts.  Here is picture (dressed up to go trick-treating last Oct ) of one of the “little angels” that got to enjoy her final months of life, because of better pain management during her last months.  Without this advocate intervention on this kid’s behalf, she would have spent Halloween in a torturous level of pain, unfortunately she has now passed .   This advocate does the majority of advocating ” off the radar” and doesn’t not seek the spotlight for doing good !
These minions came out besmirching this advocate’s good deeds and throwing out untruths and your basic “mud slinging”… that often happens within political elections. I suspect that this same group will come after me, once this post goes up on my blog…  I have INTENTIONALLY not mentioned any names – they know who they are – and if you see anyone “slinging mud” toward me after this post… you will know who they are as well.



2 Responses

  1. When u cut a script to half,,some patient will have a problem taken a minuscule amount when they had a effective dose for 20 years,,The amount of medicine allowed now a days,,,wouldn’t help a mouse,,,so i am not surprise many are NOT following their doctors forced reductions,,Again truth dictates,,if u take 1 aspirin,and your head is still pounding,,,our Going to try another aspirin,,As far as advocacy,,,I TRY when i have thee effective dose and my energy level is normal again.They took my effective dose starting about 2 years ago,,thus my advocacy has also dropped,,sadly,,,boy if i had the $$$ and the energy,,,i would fly my but over to the Hagg w/ a few others and telll them face to face what a crime to humanity Andrew Kolodny policed public policies’ have done to alllll medically ill,,,,,,but i don’t listen to many,,,but only hear the ones who believe,,,everyone has the right to WHAT-EVER
    amount work’s for them to allow them to function in society normally,,,That amount determined by patient/doctors only and their bodies ability to maintian normal blood pressure/heart rates etc,,,NONE OF MY BUSINESS what that amount is,I try everyday to email a humanrights group to at least have this torture documented,,w/the hopes to stop it,,and to never have our children literally dieing in agony from a treatable condition,,,for physical pain is treatable,,,What has been done to us IS WRONG,,,ITS TORTURE,IT IN-HUMANE,,CRUEL TORTURE,,,,AND SHOULD OF NEVER HAPPEN’D BUT IT DID,,,,WHY,,,,$$$$$$$ FOR A PSYCHAITRY DRUNK ON POWER AND A DEMENTED LITTLE IN-HUMANE THING NAMED ANDREW KOLODNY,,WHY HIS OWN KIND,,FELLOW PSYCHIATRIST NEVER STEPPED UP AND PROTECTED THE WEAKEST,THE CHILDREN,THE MEDICALY ILL,,, THAT CROSS WILL BE THEIRS TO BARE FOR ETERNITY,,,I BELIEVE,,,,,AND RIGHTFULLY SOO,,

  2. I know exactly who you’re speaking of Steve, I seen the videos and I do follow the advocate that made the video. However, I don’t believe anyone deserves to die that day. Was it wrong this patient was left in agony!? Is it wrong that now we all as CPP may look bad bc of this person’s actions!? Do I think we deserve better as CPP!? Of course I’d definitely say yes we definitely deserve better, and not every CPP would do what that person did. We deserve more compassion and empathy. Again I don’t think anyone deserved to die. My heart goes out to anyone involved. I say that bc even though I’ve been treated horribly by doctors and nurses I have empathy for those families that lost someone they love that day.Just like we have bad doctors and nurses we have good ones as well. Idk much but I think what happened made our situation worse. Anyways I know this advocate , but I don’t know the other advocate that doesn’t announce to the world her good deeds. The ones who work behind the scenes working to help others usually are the ones with huge heart’s not saying other advocates in this community don’t have huge hearts bc I can honestly say there are some amazing advocates in our community who I look up to for their bravery. I don’t think it’s right “minion’s” were sent to come after this advocate either. I remember when the CDC guidelines came out in 2016 and that when I found you Steve, I’ve actually spoke with you and other over the phone in this group I used to be apart of that we’d all talk about all that surrounded the CDC guidelines and what happened as a result. I still can’t remember what this group was called, but I really enjoyed it. I look back and remember that from what it at least seemed we all in the CP community got along and now it’s such a mess. I think Fighting when we’re all looking for the same end goal at least I think… which is we all in Cp need better access to pain medication, compassionate healthcare worker’s that will listen to us. I lost my brother to an overdose Nov 2017 , that yr before he lost his pain medication and he couldn’t take the mental and physical pain any longer so he tried to commit suicide and ended up in the ICU with no help in the end, so a year later approximately he started buying meds from the streets and about 3 months before he overdosed he started using harder drug’s and passed away at only 35 yrs old. I think he gave up and didn’t know how else to relive his constant pain and suffering. My heart is still so broken after this and our family just isn’t the same. We lost so much when we lost our brother and my mom lost her son. I remember so many in the Cp company reached out or was just so kind when I posted about his story on Twitter or talked about it on one of those phone calls with you Steve. I wish we could all just ban together but that’s just not how it is. It’s suck’s! Thanks for sharing Steve

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