We The People, The Pain Community

We The People, The Pain Community

By Suzanne Stewart.

People should not be labeled as a “pre-existing” condition. Chronic pain patients aren’t a subclass of persons who are lesser than others.  Why wouldn’t we be afforded the same healthcare options as anyone else?  I would say, after reviewing the list from the new AHCA, that just about everyone has a “pre-existing condition”.  I mean really “post menopausal” is a “condition”?  No it’s just a part of the normal progression of life! I just don’t understand this entire idea? The list is so long that I’m sure everyone in the entire USA, over 25, has something on that list!

Suzanne Stewart

WE are the pain community of the United States of America! We belong to this country just the same as non-pain patients.  We hear so many different opposing opinions, that it’s hard to know who or what is true? If someone in Congress got injured and they had multiple chronic pain issues, I’d bet they would want the same insurance coverage as their counterparts.  In fact, all of the branches of government should be given the same health coverage as “the people” of the USA.  It does make me worry that they are going to be giving the states, the option to “opt out” or not. If they do “opt out”, then they will get 8 billion dollars set aside to help people with “pre-existing conditions”.  But since that makes up just about everybody, I’m afraid that money won’t last long.  Even the extra 130 billion dollars is going to be gone in a few years, and then what?

We are told what the government wants us to know. I don’t know honestly, what is the truth?  Several years ago, President Obama told us we would be able to keep our own Dr’s., and then we weren’t able to do that! Now President Trump is telling us that “pre-existing conditions will be covered on the AHCA”.  But what are all of the underlying phrases, “ins and outs” etc.?  Really, things couldn’t go on the way they were going because the prices have become astronomical! It’s gotten out of hand and the people couldn’t and cannot afford the ACA either.  My own situation, as the wife of an employee of an employer based insurance program; ours has tripled or more in the last several years.  Instead of my husband getting raises, he is making much less than he was 7 years ago! We have to pay $1200 each, annually  for our deductibles, let alone the cost of the co-pays and the 20% that we have to pay just to have the insurance.  I’m grateful to have it, don’t get me wrong!  But it’s getting more difficult all the time.  Living with several high chronic pain illnesses and heart/kidney diseases; it has become a very heavy load on our money situation. I’ve had so many of my Physicians leave. Many have told us that there are less and less prospective physicians in medical school these days because of the uncertainty of the pay etc.

I cannot even watch the news anymore. I don’t want to hear or see so much negativity.  There’s nothing comforting in our news media anymore. I’d really enjoy seeing more rescued kittens and less of Presidents Trump and Obama, honestly.  We can turn the channels and get two totally opposing views on any one subject in the news right now. I don’t even feel like we are in the USA anymore.  I feel like things are being hidden from the people and maybe they always have been? Possibly I’m just more aware of this now? I’m not sure except to say that it feels unsettling and I just don’t know what is going to be the outcome?

In Michigan, if Obamacare were to stick around, then the premiums were going to go up by 17%! All of the employee based health care, like what I have with my husband; was going to be counted as “income”, starting in 2018.  It is called a “Cadillac tax” and this way the working families of the middle class pay for the poor people. I’ve never minded helping my fellow citizens, but who is going to help me or us?  It’s hard to know what might’ve happened or what will happen? President Trump comes in now and  vows to “fix” things.  But it’s been nothing but chaos since he’s started his presidency.  There’s so much meanness and hurtful words spewing out from everywhere. Not just one side or the other.  Why does there have to be sides anyways? Why can’t we all just be American’s trying to live and work to help each other. Why do we have to be put into little “groups” instead of just being “Americans”?

Now I hear Congress, my own Governor and the President all stating that “Under no circumstances can people be denied coverage due to a pre-existing condition”.  But then why are we so afraid? Maybe because we’ve heard so much of this in the past and it always turns out not to be true? I truly don’t like to hear so much talk about how everyone wants to “hurt” someone in the government. I don’t want to hear it from President Trump and I don’t want to hear it from the TV set every time I turn it “ON”. Let’s stop hurting each other and plotting out what hateful and hurtful things we can think of to post or say today.  Lets work together, since there’s not much else we can do at this point.  It would be so much more pleasant if we could find a way to become “one” and work to gather to find solutions to this “mess” with the health insurance in this country.  Most everyone I care about has a Pre-existing condition. It scares me to think that we are being lied to again. The Pain community is not a separate group of people who are living on some isolated “island” outside of the USA.  We are people just like everyone else. We are part of these United States and so are our illnesses.  Just about everybody has something wrong with them. Whether it be mental illness, physical illness or pain conditions, I feel that most all people have some kind of “pre-existing” condition that needs paid for one way or another.  We need to stop the anger and hatred. Leave that up to those in the government, if that is how they want to behave. But we, the people, need to form a “more perfect union” and unify this country again.

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 10 comments for this article
  1. Carla Cheshire at 8:10 am

    Medicare for All is not government run. It’s private doctors providing service. The Government would administer it as they do with Medicare. Our health care system is a mess. The free market approach has done nothing but raise costs, inefficient care and miles of red tape to have a procedure covered. Big Insurance provides no care yet they gouge consumers with their ever higher premiums, co-pays and fees that raise every year. Big Pharma? Need I even explain? Price gouges us horribly. Especially cancer meds, they have you hostage and they take full advantage. I wonder why you can never get a concrete price on a procedure to cost compare. Not even an MRI! They will not give out the information. If the free market was ever supposed to work they certainly did a poor job of offering choice. They’ve had years and years to prove that they can provide quality, affordable care and they have failed. Time to move on.

    Alex Jones is a fear-monger. I wouldn’t take anything he says as gospel, he has his own agenda. Read multiple sources. I use my own experiences of failed back surgery, breast cancer and several other surgeries while interacting with our health care system and insurance to decide that the US system is broken. It must change.

  2. Bruce Stewart at 6:27 pm

    Obamacare was designed to crash and pave the way for a single-pay, government-run healthcare system. You’re merely describing the crash. It’s performing exactly the way it’s supposed to, eliminating competition and options until the lawmakers stepped in with the government-controlled solution. Trump is short circuiting that eventuality with the new plan. If you want to find out what’s really going on, go to http://www.infowars.com – this is the counter to mainstream news which promotes fear in its viewers, and the feeling that you’re isolated and powerless. Jones has a myriad of government sources that have the low down on what’s happening. Walk through the door. Everything will start to make sense.

  3. Kahty C at 3:20 pm

    I think I have reached a threshold with all of the insanity directed at Healthcare, and really everything else. It is like the Man Hatters Tea Party, up is down, and each new statement, is even more outrageous. We are seeing the Corporate takeover of our Country. We can respond to each new threat, because it will be different next week. I realized a couple of years ago, we are all pretty much disposable. We really don’t exist, the Corporate Media wrote us out of their narrative, we are bad for Business. Pain Patients are the mistakes the ones they could not fix. Anymore, I think that most people I deal with are running on a script, like pod people. The smiles are all forced, as they try to get through the day, telling themselves that this somehow makes sense.
    I almost feel pity for the last Surgeon I consulted with. He works for a huge Medical Corporation. His actions and speech are so constrained, by the Company he works for he dos not even realize it. The poor guy went through Medical School for this, to be a Corporate thrall, He thinks with his skills and income this might somehow not affect him. They told him he is doing the right thing. One of these days the horror is going to catch up with him, and it will not end in a good way.
    The Healthcare Corporations had to come up with a strategy to hold on to their Market Share, and Profitability. They have Journalists, PR People, Market Psychologists, Data Statisticians, that have had years to come up with these strategies. Thye can monitor the reaction of the general public to every story, idea, or false narrative in real time. The tear jerking stories of the parents who have lost their children to “Drugs” are riveting. Every night on the “News” another tale of death and disaster because of “Drugs.” No one ask why is this happening, they have been conditioned into a knee Jerk reaction by clever Media people. They can monitor the reactions on Social Media, and get immediate feedback. The mother who lost her son, who a few years would have kept silent because of guilt, is now a Media darling, because she repeated the narrative the Media wants. She might have even assuaged her guilt. It is easier to blame the Doctor who gave the kids some pills when he injured himself, than her own disconnection, and failure to see her son’s distress. The Narrative leaves out a few facts. It sounds better when they blame the pills, a nice easy explanation. It wasn’t because of the emptiness of his life and the disconnection we all feel, he chose to get high to deal with his angst.
    They wrote Pain out of the narrative. The American Public is easily persuaded a lot of them have been exposed to marketing since they could walk. They hold “Beliefs” they got directly from the Media. They don’t question the narrative, even as they see an older relative dealing with pain, they can lecture them on “Study” they heard on TV or saw on the Internet. Grandma can buy a Back Brace, take Turmeric, or perhaps she needs to “See Someone’ and get some Anti Depressants. The Marketers left out the danger of taking Anti Depressants with blood Pressure medication. The Industries found that information inconvenient, so they lobbied to make sure that no Doctors would collect that data, or even connect the dots. The local health Departments that collect that kind of information, have been underfunded so they can only attribute those deaths to “Underlying Causes” instead of Poly Pharamcy. The only time the Pharmaceuticals are mentioned is when Opiates are involved. They did not make a Distinction between Heroin or Street Fentanyl, and Prescription Drugs. The numbers would not have been so sensational if they had done that. They went after the Pain Patients, they were an unfortunate and easy group to target. The Medical and Insurance Industries did not like to mention them anyway, They are the ones they can’t fix, or the mistakes. it was easy to representative them as troublesome and suspicious. The Media ran with a narrative about that guy in Appalachia, that was hooked on Oxy. He also helped explain the “Epidemic of Despair” all of those “White People” dying before their time was explained away with drugs an Alcohol. The Symptom became the cause. The ones who turned to alcohol to relieve their pain after years of hard work, no Medical care, and the “Can Do Philosophy.”, were now pathetic drunks, not hard working Americans left in the dust when their bodies broke down.

  4. Heather at 1:26 pm

    Agreed and I say a list But not has not passed yet that has lots of disorders that are not exempt for example Hypertension, seriously how many Americans live with high blood pressure, a lit of cancers, your oridibary diagnosis. I mean really I surely hope this is not true. Everyone derserves fair healthcare whether healthy or who have 50 diagnosis. It should be fair across the board. No need for pre-existing. What ever happened to treating the patient and the insurance covered it??? USA has the worse healthcare it says in the world like inntue top 3 when we are suppose to be the best. We are failing and need to all he as one Nation not divided and treat everyone with respect and dignity and stop all the judging. It is getting old and I’m really sick of it. Just disheartening!!! Someone needs to hope none of this is true. So my suggestions are Stand up, Speak up and Let your Voices Be Heard. Most importantly BE YOUR OWN ADVOCATES!!!!

  5. HJ at 12:46 pm

    I may schedule surgery this year for something that I’ve had for years that might become an emergency at some point – or might never be an emergency. I’d rather get it done while I have coverage I can afford (under Obamacare, actually!). I did get to keep my doctors under Obamacare. I’m no longer relying on my PCP to handle my asthma, complex/multiple food allergies (some life-threatening) and sleep apnea. I have resumed seeing specialists again because I can afford to.

    I’m very fearful of what’s to come, and in despair because I went from being unable to afford to receive care and ending in deep in debt ($20,000+ on credit cards) directly or indirectly because of medical problems to being able to afford my care to…. …. …….??????? So, I’m going to run out and get my gallbladder removed and my hernia fixed before Obamacare goes away.

    I’ll be saving my vacation this year to recover from surgery. Yay. I’m sorry things have become so partisan. I truly am hurt and I truly am angry. I’m sure people on both sides of the political divide are feeling it. I dread seeing the news, myself… Life used to just “go on” and now it’s politics 24/7. It fuels how I feel. I see people I disagree with being very inflammatory and it’s HARD not to respond – particularly when you’re scared, angry… and living with chronic pain.

    A general message to nobody in particular:

    I do my best, though. You folks aren’t my enemy. Please treat me kindly and I will treat you as you treat me. Otherwise, we should both walk away without hurting each other more than we already hurt. At least in one sense, we are fighting the same battle (of chronic pain).

  6. Michele Howe at 10:25 am

    I am an American citizen,
    Not a condition! And so is everyone else who daily try to make it through the day with reduced pain medication. I have been fortunate, so far. My pain meds have stayed the same, for right now. I worry about all of us.
    What gives a Pharmacist the right to over rule a DR’s prescription and not fill it? Our Government, that’s who.
    I’m tired of those who abuse the medication, making it difficult for all of us who need it legitimately.
    The Author of this article is so correct.. Until we stand together as One and begin to fight back as a whole..this will continue.
    Please get involved and help to get our words heard. It’s only a matter of time until these medication reductions affect every single one of us.

  7. Rita KIMBEL at 9:16 am

    Will the battle​ ever end, my pain will never end, untill death do us part. Currently I’m allowed a very low dose of opiates and the neurogenic toxic pain is breaking through constantly. My neurostimulator is not even helping with the bursts of pain coming through my hands. I’m defeated, taken down by the decisions of the CDC. my will to fight gone. Just making the motions now, hoping someone will keep fighting for us. Hoping tomorrow is a better day and I will get my milligrams back so I can function again, but not expecting anything anymore. Very thankful for people like you Suzanne, keep up the good work.

  8. Carla Cheshire at 9:15 am

    This is the time we must move to Medicare For All, single-payer system! We can no longer continue to be price-gouged by For-Profit Big Insurance, Big Pharma and Big Hospital Groups. I’m sick of the free-market approach, it doesn’t work! These entities all collude, price-fix and care more about the shareholders than they do the patients. You cannot cost compare health care because no one will tell you what a procedure costs!

    The US ranks 37th in health care, tied with Cuba. (WHO) We pays 6X’s more than other countries but the entrenched providers above will tell you your taxes will go up.
    How can they be worse than the constant escalating costs of 10%+ each year for for-profit care. Higher premiums, co-pays, fees and denial of coverage. They just don’t want to lose their windfall.

    I’m tired of the politicians who are paid off to keep the status quo. As Iben said they should have the same health care that We the Citizens have, no special program for them.

    Medicare for All. Negotiate costs. Remember insurance doesn’t provide any care, they are a middleman that must go. No more carte blanche for Big Pharma. Congress passed a bill that said they could charge whatever they wished for their drugs, that needs to go too.

    Every citizen has a right to health care. This is a country, we must work together for all and quit stomping on others who have less, are ill, or older. If we go back to 50%+ with no coverage, we treat the sick in the ER. The most-inefficient, costly, poor-quality outcomes that we all pay highest for. This is the US we can do this! The will of the citizenry is here. The paid-off, obstructionist politicians must get out of the way and let Medicare For All begin in the United States!

  9. Ibin Aiken at 6:54 am

    I wrote President Trump a “written” letter just after inauguration day. I know that I am no one special but, I stated that I was writing representing millions of chronic pain patients and the very negative impact that the CDC “mis-guided” line was having on the chronic pain community. I at least expected to be “blown off” with a return letter from his staff. I got nothing. I realize there are many important issues concerning Americans however, chronic pain is also…..an issue.
    Our doctors do not prescribe three times the amount the amount of insulin for a “light”: diabetic. They do not prescribe the strongest anti-biotic for all infections. They do not “cast” a sprained ankle if it does not need be yet, ALL chronic pain patients have not only been limited their previous medication, we have been reduced as much as 80%, personally. I have been self-employed for 35 years and have struggled with very high insurance costs for me and my family. Afflicted people need medical health care insurance because of “pre-exisitng” conditions, not because they are still healthy for right now. The point made about our political leaders receiving the best insurance policies available is well taken. These folks are voted in by us, and then they vote the best of everything for themselves. They are elected to office to represent ALL people. The majority of us are living from week to week. I don’t have an underground bunker and tunnel system to protect my family! When it hits the fan our politicians are not interested in “governing” our people, they are interested in their and their families personal safety and……comfort. The real heroes are the volunteer firefighters, the medical first res-ponders, and many more fully volunteer organizations that expect NOTHING in return to help their fellow man.
    I love this country. Something good has gone bad wrong and I am worried that it will never be regained. The current health insurance policy by the Trump administration is bound to leave those who have been an asset to their country, some for a lifetime, without sufficient healthcare even though we have paid our dues. It has already happened by making those suffer in pain who could be able to navigate life a little better without healthy people making choices for our doctors in the treatment of those afflicted with disease, accidental injuries, and surgery gone wrong. I am a prayer full person and I know “in the end” everything will be all right but, causing good people to suffer needlessly is asinine. The people in the chronic pain community are being profiled and I hope may be our “politicians” will intervene. Heaven knows I have wrote my representatives enough but, again, I am only one person. CDC does good work that I can’t fathom keeping Americans and the worlds’ people healthy or curtailing “epidemics” but, to make people suffer and taking away our doctors’ ability to treat those in chronic pain was a biased decision against one and all. I do NOT believe that it will stop recreational use of opioids!!!!
    Our records in pain treatment whether in a specialist clinic or by our general physician tells the story of how our prescribed medication has been used. I realize that some people use opioids recreation-ally but, some of us don’t. It is as if government and CDC realize that we, the chronic pain community are not able to rally, load up on buses and descend on our capital to argue our point.
    In the meantime some people in chronic pain are turning to illicit drugs or illegal drugs in the effort to simply survive constant, severe pain. A bad decision has been made by CDC taking such a hard -ass approach in the attempt to curb drug use. It has failed. If we are to reduce the availability of life enhancing opioid medication then lets also go back to prohibition. That didn’t work long either.
    With CDC’s “mis-guided line” now in full affect, how many people will be noticed or recorded to take their own lives because of the guideline? I have had a guideline for decades. It has been my doctor who has monitored my health, my well being, and my prosperity for over 23 years but, that don’t count.
    I am very concerned about the states option to opt-out causing the chronic pain patients and others with pre-exisitng conditions in my state to become even less confident about their future. It seems there is no subtle changes made in regards to any perceived “problems” by our elected officials. It is “all or nothing”.It seems that no official from local government to the president has honorable intentions for the core of the American people any longer. I still have faith that a dead wrong will be righted. It is just that many must suffer before appropriate action will be taken.Our elected officials think only of dollars and cents, not dollars and sense.

  10. Diane Succio at 6:48 am

    I just can’t for the life of me figure out how anyone can get insurance. Just living is a pre-existing condition.