Chronic Urban Legends

Chronic Urban Legends

Let’s divulge into some spooky stuff…

Recently I was asked by a person I greatly admire, “if there were one thing to educate the public on regarding how those in pain live, what would it be?”

Ordinarily it’s not my style to answer a question with a question but my first thought was,

“Where should I start??”

The definition:

*Chronic pain: Pain (an unpleasant sense of discomfort) that persists or progresses over a long period of time. …Chronic pain may be related to a number of different medical conditions and previous trauma or injury.

– Or in other words –

Some of us live in this state, constantly– on a scale that most can begin relating to, how about the last bad stomach flu? Hangover? Stubbed toe or smashing of the not so funny bone you’ve endured-

Reflect upon the possibility of that never-ending annoyance…

Countless therapies have been attempted, medications tried/failed, changes in lifestyle can help yet are far from a cure-all and odds are many of the suggestions offered to us [whether we asked for them or not] are also things that haven’t proven viable.

Mia Maysack

My instance is a once in a lifetime situation, to the point I’m fortunate to be alive even though a traumatic brain injury has been a daily companion for just about two decades straight, not much a person can do to medically relieve this circumstance but it took years for us to even put these pieces together and many more years experimenting with treatments that had detrimental effects.

Statistical facts:

* 20% or 50 million adults live in pain – 19 million of which are *chronic

* It impacts every aspect of quality of life- includes risk of anxiety/depression

* Veterinary students get (5x) more pain focused schooling hours than medical students

* Despite being a number one reason for accessing health care & leading cause of long-term disability, 2% of NIH’s funding goes to pain research

Ignorantly enough, a person could have read up until now and are still asking themselves why they should care…

It’s more than plausible that we all know of someone(s) enduring this sort of difficulty even if we’re not personally impacted ourselves.

No one would have chosen for this to be the way we lead their lives, often from personal experience I can state that it’s the ailments that can feel as though they are leading ME!

As if enduring all of this isn’t enough, there are too many experiencing extra ridiculousness throughout our health “care” system — let it be known that the fentanyl / heroin epidemics are entirely separate from the prescription opioid crisis —

Let’s go back to the thought of a sprained ankle, toothache, seasonal cold or mild burn – imagine coming across something that helped aide that hardship, but having it taken from away suddenly and then being refused as not only a patient but PERSON altogether.

When people have to wait in a line or restaurant messes up an order, they run out of their favorite coffee flavor at Starbucks or get worked up about being cut off in traffic — they don’t stop to reflect upon the fact others are out there that pray for the minuscule problems – we’re talking about inability to properly navigate mobility or complete daily activities of living, spoiled relationships because those we care about just cannot understand or the very real grief as a result of a life once lived and lost…

Obviously, there’s discrepancy regarding proper education among the masses which is indeed frustrating to say the least, however, it’s equally disheartening when we won’t lift a finger for our own Causes.

There does come a point where it’s our responsibility to raise the awareness we all desperately want and need hence requiring some form of effort on our end.

Recently I was discussing important legislation among other Pain Warriors who’d all expressed having been personally impacted by the issue — proceeding to explain next steps regarding policy, I’d witnessed their eyes glaze over- one even whipped out their phone in disinterest while everyone there began essentially groaning in discontent.

Stunned by this reaction, I felt the need to reiterate that this specific Bill would immediately impact a high percentage of Americans with capabilities to lead Nationwide on a Federal level.

This is a Call to Action:

Even within our own Community, we at times do not show up for the sake of ourselves or each other so how could we go about expecting anyone else to if that’s the case?

It goes without saying that not everyone is interested in or even up for traveling to D.C. for a Congressional meeting, attending rallies, facilitating support groups, sharing their story on a public forum or anything else that may considered to be ‘extravagant’ but the facts of the matter are that someone has to and there are other things we can do on a regular basis that will help inch closer toward change and relief for these millions of human beings…

Our individual experiences are valuable and whether you live in state of hurt or not, we must begin to care about one another on a fundamental level as creatures living collectively on this Planet. Our rights as a People are being threatened which is ultimately something that’ll impact everyone at some point or another, why wait for it to happen to you -or- why accept the fact that it already has?

One of the biggest myths is that there’re only ‘certain ways’ to advocate for oneself or each other when, there’s only one unacceptable thing to do and that, is nothing!

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Authored by: Mia Maysack

Mia Maysack is a Chronic Pain Warrior & Volunteer Patient Advocate who lives in Wisconsin. She is also the Founder of Keepin’ Our Heads Up Support/Advocacy Network and Peace&Love Holistic Health/Wellness.

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dooney

To the soldier, I’m so sorry you were treated this way. It disgusts me. This comment is a warning for everyone. Do not make comments like you could off yourself with meds because they could flag your record, joking or not joking. When they rang up my husbands gabapentin wrong and it was 500.00 we were joking about having to sell some on the on the street. The pharm assistant let us know dont ever say things about meds because the pharmacist can refuse to give then to you and cut you off.

Robert has hit the nail on the head! You better believe our government knows what they’re doing, they’re not as stupid as they’d like for us to believe. Stacey Wagner puts it into perspective when she says my pain eats at my soul day and night. Enough said.

Stacie your not alone with your feelings although Hitler had the decency to 1939 T4 project. Robert you hit the nail on the head this genocide was planned long ago you’ll find a good breakdown example if you Google “How to kill 300,000 Americans and get away with it” zero hedge, of course that number is low as the article was written long ago and the original article has since been scrubbed from the web go figure! Blame China and Mexico if you wish “brainwashed” but they didn’t start this the cartels had to jump on board to compete and there are video interviews of cartel members available backing this up and remember where 90-95% of the world’s poppies are growing Afghanistan and 90-95% of that is located in the Helmand Province look online see if you see armed soldiers guarding that wearing fentanyl pouches instead of morphine and then compare that with the pictures you may or may not find of them destroying it. Look at the charts of production levels year by year they paint a clearer picture.

Stacie Wagner

I do not feel well enough to be any kind of ambassador for my pain. I want physician assisted suicide and every door I have knocked on verbally they scoff at me and tell me that it can’t be that bad, I have options they say. More surgery, dental implants, implants of various electrical stimulators. I am not a genie pig. I am a human being that should have the right to escape my pain. Doctor’s will not go above 90mme which simply allows me to go to the bathroom and wipe my own bum. I cannot bathe myself, do my hair, afford dentures and implants, anymore surgery. I have been denied SSI because I cannot get all of my doctor’s informational notes together. I am the financial ruin of my loved one. I have no desire to have my future grandchildren to see me this way. I do not have a relationship that is not damaged because if me. I am useless and being treated like a drug addict is only insult to all of the wounds suffered by you ‘do-gooders’ that have completely destroyed the small amount of integrity and pride I had left after 18 years and have said I was already an addict and that the pain I felt was imagined. My pain eats at the small remained of my soul day and night. I deserve to leave this life while I haven’t destroyed everything good I had remaining. #Right to death with dignity #assisted suicide #leaving with pride # intact emotionally #,betrayed by the CDC and NHH.
I don’t respect how you caved in prescribing guidelines. I believe all of you are just as evil as Hitler’s Nazis!
#death with dignity #break the internet/assisted suicide rights #death is correct #all hope is lost/ unless death is f
The CDC is killing me crushing me down to 90,mme.
I was stable on a cocktail of meds and free from the permanent bondage of my bed.
They have stripped my body away deceived my mind, opioids were to stabilize pain.They have ignored my pleas, Claim all are equal in their pain. They released HHS report #CDC/HHS ARE KILLING ME!!! They do not care if we die.#OPIATES save LI

Cindy too

To Afghanistan soldier — I hope you write to the President of Walgreens.

While dispensing may be up to each pharmacist, it’s most certainly NOT up to a pharmacist to tell a customer what his/her diagnosis is, & none of us owe any pharmacist a note from our doc or our medical records. That behavior is outrageous.

You also could complain to your state pharmacy board.

Esp as a Veteran, you deserve better, and in you complaint letters, be sure to underscore your service.

To the Afghanistan Soldier. It’s a shame the way people treat our veterans! I could just cry and sometimes have, especially on the 4th of July or when I seen one and want to shake their hand, tell them how appreciative I am and thank you. I learned a hard lesson years ago from CVS, a year later from Walgreens. To this day I do not darken the door of a CVS for anything, that’s how badly I was treated not to mention talked down to by the pharmacist. This was after years of dealing with the same pharmacist and pharmacy staff. I was told outright that the doctors didn’t get to play God anymore, they did! After much research I found that if you can, find a Mom and Pop’s Pharmacy for they truly care. Yes it takes time to establish a relationship with the staff and pharmacist, but is so worth it. They treat you like a human being, they’re decent people. I’ve never been reprimanded or received any speech for obtaining my pain medication. I’ve dealt with them for 10 years now. It was the best move I could have ever made. I came to learn that the pharmacy staff at all CVS’s and Walgreens were the same. After the bad experience at 1 CVS I called 12 others and the comments I got were repulsive to say the least. I asked one question, that was why couldn’t my Alprazolam be filled on the 31st day. I figured it out, at least I think so. They weren’t counting the days, it had something to do with looking at it say the 5th of one month to the 5th of another. Some months have longer days and some have shorter of course. This is the best advice I can give anyone, at least when it comes to pharmacies. Do to their arrogance I wound up in the ER. When I told the ER doctor what they said he was outraged. He said to me, only a pharmacist would say that, you’re not making this up!!! I thought to myself, why sir do you think I’m here!

Thank you for writing this article. I couldn’t agree more.
I am disabled after being struck by 2 separate texting drivers while waiting for a red light.
I have also survived cancer 3 years So far. I used to feel fortunate to be alive. But being treated like a ” bad person”, for taking medications that allow me to care for myself and do a light duty job, is hard to take.
Instead of being proud to survive cancer, I am constantly reminded of the cost and how it has affected us.
I was advised to have spinal surgery to repair damage to my cervical spine that causes pain affecting my neck and use of my left arm, but refuse to have that surgery. I had spinal surgery 31 years ago and the surgeon did a great job and I was given medication to control my pain. This made rehabilitation possible and after 6 weeks I returned to heavy work allow8ng me to work and raise my kids.
Having gone through this, I know that controlling the pain helped me heal and get back to work. Now they propose a more radical surgery including perminant metal plates to stabilize my neck. I have seen patients and the extreme pain they had following similar procedures. I can’t knowingly enter this surgery including 6 days post surgical pain control. This is insane. I could never rehab this in 6 days and there is no assurance that it would lessen current pain. It could make it worse.
There is no longer any empathy for the old and disabled in a country I once would proudly give my life for. Now we are treated like a nuisance.
Before this insane attack on pain patients, I felt very fortunate for my life and family.
Now I feel like a burden. Like in this world I should have let the cancer run it’s course so I wouldn’t have to endure constant Pain and feel like a nuisance to be alive.

PAT KOCSIS

We need to Educate the media,.They only till one side of story , I am a RN never were patients sent home with 30 day supply of narcotics it was 7 days then would be seeing your Dr’s follow up .We need to have the public here both sides of every story

Robert

Does anyone honestly believe our government doesn’t know what their doing? They deliberately caused this crisis among the pain community. We have been in Afghanistan for 2 decades now for only one reason, the planned monopoly, 90% of the world’s poppy production. Heroin is the game, the big money our Central Intelligence Agency has been playing as they did in the Vietnam war.

The unexpected problem for them is China’s retaliation with the cheap coal based fully synthetic, easy to make and far more profitable Fentanyl. Mexican framers who grow poppy have had to reduce their prices by 2/3rds because of it.

Before we can stand up for our rights as citizens of this once great nation, we must first acknowledge the truth, understand the motivation and history.

Gail Honadle

Can we go back and use the original terms for DOPE street drugs that Addicts use. Pain Medications made by FDA approved Pharmaceutical companies, prescribed by qualified medical doctors after test are run for a Patient, filled by a Pharmacist. Not a Street dealer who concocted them.

Then use the correct term for pain that last decades. Intractable pain, also known as Intractable Pain Disease or IP, is a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures. It is not relieved by ordinary medical, surgical, nursing, or pharmaceutical measures.

Susan

Thanks Mia.

Afghanistan solider

I know it’s very hard for people in pain in today’s world. I never thought I’d ever need anything more then an aspirin. Lol was in Afghanistan , Iraq played football got hurt brushed it off hell got fing shot a flesh wound and delt with it . Worked our 5 days a week 2 hour days . Even after a motorcycle accident was on light pain Mgt Now fast forward to today I have stage 4 cancer the pain is unreal I try like hell to take nothing to fight it off I go to the gym two times a week can’t get two hours anymore because of the pain . And a Walgreens pharmacist tells me that I don’t have stage 4 cancer and I need to be fucking careful with my pain meds . Sorry 😐 it’s like dude I have cancer he doesn’t get it I should go on lower dosage . I tried to explain it to this dope but it’s like yea dude I’m a drug addict and it gets harder and harder to get any pain meds . So I wrote to this congress website that so many people responded to and wrote my name and why I’m hopeful something can be done if I want to off myself I could do it easy I told the pharmacist. He just made a stupid remark. So I hope everyone gets this information out about pain it sucks .

Dawn Laidlaw

Very good article. I will be traveling to DC later this month, and have Chronic Pain as a topic of conversation when meeting with my congressman. I would love to have more appropriate speaking points such as these to take with me.

Rakel

The American Dream is very damaging in this respect. There is no concept of society or community. Of course as Malcom Gladwell wrote, “The American Dream” is a complete myth. Nobody is self made. They all have one or more of the following: money, privilege, contacts and networks, luck, health and good enough parenting.
Human Rights in the US will be a disgrace until this myth is destroyed. It is not one of the happiest couples tired on earth, the happy countries in the annual survey are the high tax high public spending Nordic Countries. In these the concept of community and shared responsibility to others is built into the culture, the law and the education system. The UN called out the US on having “The worst huma. Rights record for women of any developed country …and more poverty too.

I am fortunate to be able to emigrate so I can manage my pain better in a low stress society which will lessen my pain and make it easier to manage. I’ve suffered severe and repeated criminal abuse which in law is torture from medics for my pain state in the UK and been given PTSD by abusive doctors. Here too law enforcement are refusing to act to protect these criminals. Not libel I have no shortage of evidence.