Betrayal, Lies, and Let-Down of Chronic Pain Patients: Vote Wisely!

Betrayal, Lies, and Let-Down of Chronic Pain Patients: Vote Wisely!

By Fila Paragas.

As we are getting closer to the mid-term elections this November 2018 and CRPS Awareness Month, I have previously decided that I would not vote for anyone, least of all those who only pretended to show compassion, but who did not care for the extreme pain and horrible conditions of CRPS or formerly known as RSD, and in particular the circumstances surrounding my CRPS case with the UN World Health Organization (WHO), the supposed leader in health.  And here is why…

Not until I read the recent articles, Opioid Bill Heading to the White House by Ed Coghlan and A Call to Action for Chronic Pain Community by Mary Cremer.

Fila Paragas

For anyone who may have read my memoir which took me a few years to write due to CRPS conditions, a photo of me from muscle dystrophy and barely living, fired illegally from WHO with no income and disability, and on the brink of home foreclosure and hardly unable to pay my bills.  CRPS can affect anyone and unknowingly I was unlucky.

In pain, I was trying to survive and function each moment of the day, just simply trying to breeze through the day literally speaking with the basics of living.  Very weak and bedridden most times and zombie-like,  feeling as a frail 90+ years old woman, I kept a brave face for my family and friends. I cried profusely every day from the torture of pain and related complications I could not understand. I could hardly walk a few steps or any short distance, withstand a prolonged standing, and stayed bedridden between many very long pauses.  No walker or wheelchair ever provided.  Pain consumed me. I fought to survive from day to day.

Yes, I wrote for help to the highest-level Administrator, the WHO Director General, a medical doctor, who received my desperate call for help, but she never replied or saw me.  I dragged myself out of bed with crutches for support to see the WHO Human Resources Director, WHO Chief of Cabinet, and more.  Disguised under the cloak of compassion, no one really helped me. I was betrayed and lied to by medical professionals and others, colleagues of WHO doctors, WHO Insurance, and Accident Insurance and more.  Further abuses only worsened my CRPS conditions and almost took my life.

Since 2010, my friends and family sought help, and with the exception of POTUS’s reply email, no one bothered to reply.  With more delay from WHO, I went in desperation on the verge of tears with my daughter in front of the security gate at the US Mission in Geneva to get help.  Fired with no income and struggled to pay groceries and mounting bills, I was trying not to collapse in the middle of cold winter 2012.  But no one came to help us, and did not even reply to my letter.  Not the Honorable Ambassador.  Not the Honorable Health Attaché.  I was dying inside and outside.  Ironically left stranded in one of the richest countries in the world, I was struggling to survive.  Waiting for help that never came – I hung on.

No one cared!

In California and in the city of San Francisco, I sought help from my elected officials to the Congress, being one of their constituents.

My family and I even traveled long distance to Washington, D.C.  We searched and stopped to see our Senator Dianne Feinstein.  I said we came a long way, but was told by the staff that she could not see us.  We saw her in real life as she walked past us. Apparently, she was too busy!  Disappointed, we took the picture anyway in front of her office to commemorate the event.  The only reply from her office referred me back to the World Health Organization. I choked from disbelief.

At the office of another Congress member, Rep. Nancy Pelosi, despite numerous visits by me, family and friend, no help was given.  I was given a list implying that I should run around different places in San Francisco, indeed for someone like me, with debilitating conditions and in pain of CRPS.  Her office chose not to get involved. Never able to see her, I received a copy of her book, Know Your Power, as a souvenir – a token after several visits.  I gave my printed book. But I just could not bring myself to read her book yet.

My elected Congress members have let me down!  In my opinion, they also have let down the chronic pain patients and pain community.  I never went back to them again.

I honestly could not bring myself to forgive those who have hurt me and displaced my family, or those who have turned their blind eyes, have participated, or have allowed the abuses and atrocities to continue.

Actions do speak louder than words.

Life with pain is cheap to these Congress members.  I do believe that many legislators, and others have not gotten their facts right and are ill-advised, or simply could never going to understand pain patients, or incapable to do so. Some of them have no compassion, or misguided compassion, and cannot empathize and never can, until perhaps one day during their lifetimes when they might have to confront their own chronic pain for themselves.

As chronic pain patients, families, and friends, we have to vote for those who truly care for us and pain community, and even more so, for those who are truly concerned for our well-being and proper care, and not be compromised and blindsided.  The officials should be elected because we have some trust in them to do good things in the jurisdictions they are to serve.  If not, they have failed us.  We could vote them out of office.  And we should continue to speak out with our collective voices.

To me, my elected officials have let me down!   I can only speak of my own personal experience.  They will not have my vote ever again. Pain goes beyond party lines and affects anyone young and old. We must have the decency to do better than what is happening now to the pain patients!

We must vote wisely!

_____________________________________________________________________________________

Fila Paragas is a former UN/WHO official.  She wrote her illness memoir after her long suffering from chronic pain conditions from bone fracture in the foot and her efforts for recognition of Complex Regional Pain Syndrome (CRPS), by her former employer, the World Health Organization (WHO) in Geneva, Switzerland.  Her memoir recounted her long journey with the medical community and others to reflect the poor knowledge of pain by those involved.  Her E-book is on Amazon Kindle in both English and Spanish. For more on the book and the author, click here.

Thank you Daily Mail article of July 25, 2018, by Stephen Matthews for bringing the story and heartbreaking pictures – the dreadful plight of Kayla Hansen in Arizona with her CRPS and many devastating effects. To her and all who are suffering everywhere, my heart goes out to you.

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Authored by: Fila Paragas

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Sara

I am a so sorry for everything you’ve been through. I go to Washington every year with a group advocating for increases to NIH funding. I haven’t met with any of my three congresspeople yet. But I have met with their staff may times, and it’s important to note that not only are the staff super important and greatly influence what the congresspeople work on, it is normal for advocates to not meet directly with their Congresspeople. Maybe it shouldn’t be that way (I don’t think so), but I just wanted you to know that you’re not alone. Also, the attack on the pain patient community is completely bipartisan and almost 100% supported by every politician. Again, it’s not right, but true. It’s important for all of us to meet regularly (or by telephone) with our congresspeople and/or their staff to tell our stories and push back. We all should be doing this regularly, period. Best of luck to you!

Laurie

The gov planted an addiction fear trigger in the American psyche long ago. Now that they’ve lost pot as a mechanism to attack us, they moved the drug war into doctors offices.
Big money!
We have GOT to vote! Blue all the way.
The drug war is just another attack on the American people
I am trying to figure out how to get to the polling place as I have zero energy….but I will, somehow. I know how evil the right is.
I intend to vote blue until I die

Susan

The whole Opioid Crisis..baffles me..I have numerous pain issues, all bone related. I have to use Indian Health care. No ssi, no medicaide, no insurance. My husband is a Disabled Vet. Im his sole caregiver. My pain clinic (Ive had 15 surgeries, been on pain meds 14 years, and functioned very well) Has dropped all my meds, want to put me on a new med. Which is 4 times as much money as the Hydrocodone I was on. The government doesnt go patient to patient, they dont care about the people like me. I feel unworthy, because I dont pay taxes, I cant work, no insurance..Im a nobody. they dont care..

IT’S A NATIONAL HEROIN/FENTANYL EPIDEMIC, NOT PRESCRIPTION (OPIATES) DRUGS.

SAD BUT TRUE: I have lost family members and friends, and I am always reading about too many young and old who have died from misusing DRUGS. It is tragic, for sure.

HOWEVER, I feel compelled to defend these prescription PAIN killers (opiates and others in that class) that are truly MIRACLE drugs for the 99% of the people who NEED/REQUIRE them and take them AS prescribed. Some people I know have been prescribed them for up to 10 years for chronic debilitating PAIN. They cannot live a quality productive life without them. They are 100% safe when used AS PRESCRIBED.
Please STOP blaming these prescription drugs because 1% abuse them. It’s the illegal street drugs HEROIN/FENTANYL that are killing our family and friends; very, very few from illegally obtained prescription (OXYCONTIN) drugs. It’s the HEROIN/FENTANYL, NOT the synthetically manufactured OPIATES;  i.e. OXYCONTIN.  Alcohol, which has killed and maimed hundreds of thousands of innocent people and destroyed families throughout the years in the USA alone, is a perfect example.

There are always those who will abuse whatever they have access to.  

kelly

Outside of Patrick Starnes, Independent candidate for Governor in Oregon (whom I’ve met personally & who’s done a ton of work for CPPs), who the heck do we vote for?? Who else out there has resisted the hysterical PR koolaid?

This is a serious question; I’m not trying to be snide here. I wouldn’t vote for Greg Walden if you put a gun to my head, but who is there to vote for?

Jenifer

Well I will tell you what this not just a matter of pain medicine put people seem to forget that Republican were one vote away from taking pre-existing conditions and allowing insutance companies to charge whatever they want. Since the one Senator who stopped that from becoming law is now dead if Republican keep the house most Americans will see there health insurance prospects go away. In fact Republican also want to pass in there tax law that if your insurance paid for your insurance costs that your employer pays would be taxed as income. So if you employer pays $8,000 a year on your insurance your income for your taxes would be as you got that $8,000 in your hands. Republican also want to take the 32 Trillion saved in SS and Medicare and put that in a general fund. Basically then this money could be spent on more tax cut for the rich. When the talk about SS run out of money what they mean is that SS will have to go into that saving account just as it was meant to happen since baby boomer have paid into it for there entire lives and not about ready to get there money out. How would SS be paid if this account is gone. Well it would depend totally on what is earned the year before. Republican will tell you that SS and Medicare is costing to much. Dont let them fool you because income taxes do not fund SS and Medicare but instead the FICA taxes you and your employer put in.
Also I never had to go to Washington DC to see my Congressman or Senator and sound like the writter just want to pop in. I also do not what WHO has to do with the elections. While I am terrified of losing the medication I have been on for 20 years I am more worried about losing my only income and my entire medical care. So should everyone else who has a pre-existing condition since Republicans have voted over 50 times in the past 8 years to do just that.

Mona Mallory

The politicians’ 401ks are tied to the new drugs. It’s a conflict of interest, for the pols to be voting on these drugs, while profiting on the back end. If you really want to make a stink, very respectfully, contact the Inspector Generals of each State and have them look into this obvious conflict of interest and possible crime. The media may or may not be of help, they seem to ignore the whole chronic pain issue, mostly.

Fila Paragas

Thank you for all your comments and my heart and prayers go out to you, hopefully to alleviate some pain and conditions you are enduring. Unbelievably, this is happening in the U.S.!

I will VOTE.

Please…U.S Pain Foundation, RSDSA, etc,.or anyone familiar with nerve damage reach out to TAMMY HOPKINS as she is alone and in dire need of help? So sad to hear that her doctor is not helping or finding ways to help her! Not even examining her feet.

My story showed that one could not get help and there are no pain protocols in place, not even at WHO Headquarters. Later, I was fortunate that two doctors believed my pain and suffering from CRPS. My doctors took a great deal of time and attention to take good care of me since 2010, one of them apologized to me for the mistreatments I received from WHO. As a critical part of my medical multidisciplinary team, I have fought to get well and have gradually managed my pain and conditions. I did not undergo urine test, or forced tapering of medications that one heard of. In my opinion, these are cruel and inhumane practices to US pain patients! Very sad 🙁

Mary

To my fellow Chronic intractable pain cohorts: ASK YOU DR ASAP FOR A Medicare Part D Waiver before January 2019 comes. I am so tired of the duoduenal ulcer that bleeds because of the cut back. Not to mention my cervical spinal issues since 1991 and my fusions.

So much blood loss! No more NSAID meds, whether RX or OTC for me. All done. Acupuncture TCM has depleted my reserves as Medicare does not cover it.

Write the OIG and get some legal advice. Start with our Federal Government. Read MEDICARE AND YOU 2019 page 80 and discuss with your pain management physician.
And consider Traditional Chinese Acupuncture.

Don K Davis

so who do we vote for? NO politician in the races in SWVA will even half-way support
chronic pain patients. Seems everybody with kids their greatest fear is that they will
get access to opioids.What a terrible mess for those suffering in pain all their waking
hours. I think history will look back at this as truly barbaric.

GRETCHEN A WAGENSELLER

Your situation certainly was dire and what you went through sounds horrifying. Our country does not actually have a “safety net”–is has a few tattered pieces of what could become a “safety net” for those truly in need, but part of our country is too fearful of “fraud” so they make it incredibly difficult process to get SSDI, SSI, etc., and many are rejected. [BTW, I am also a member of that “lucky” club, the Chronic Pain Community (CPC) due to Fibromyalgia, but I have not experienced the levels of pain that you have.] It sounds, at least my understanding, is that you needed (perhaps I’m incorrect) in the immediate, “safety net” assistance for survival–food, shelter, healthcare, disability. Ideally, one of Pelosi’s staffers would have made the phone calls in the San Francisco area to the governmental and non-profit groups to find someone who could act as your advocate (take the lead) to get you what you needed (SSDI or SSI, depending on whether you had paid into Social Security for long enough, food stamps, housing). (Normally their staff provides “constituent service” if someone has a problem with an agency in the federal government, e.g., someone applied for a benefit–and it’s being unduly held up. But they don’t have the staff to fill out the applications for benefits for all their constituents.) Re getting more funding for CRPS NIH research for pain management and cures, supposedly, there is a “formula” that is used and the most effective way CRPS lobbying for more funding would be done through a national CRPS patient advocacy group who would more likely get access to Representatives because they represent a “group”. I understand why you are soured on your political representatives but, please know, there are many of us in the CPC who desperately need affordable health insurance and the 2 parties DEFINITELY disagree on this important issue. I hope you will vote.

Kim

Sorry I just posted but would like input regarding how we r addressing this issue. I feel we should push 4 the media 2 tell the real story/ agenda. The public is being told the guidelines will not effect patients on higher doses of opioids in medical need & their pain specialists can submit records/ paperwork 4 approval. The public thinks if the md is not doing this we r addicts & not in need. But what they need 2 know is that MDs r not getting paid 2 submit this paperwork & MDs who don’t care & submit the paperwork r being told, behind closed doors, if u submit this paperwork that ALL aspects of u r practice will b under a microscope by gov’t agencies. After consulting with over 5 pain specialists, they all said, yes u have a medical need 4 higher doses of opioids but if it comes 2 u r quality of life or mine, sorry I have 2 fend 4 myself”. The media/ public has no idea this is occurring. MDs r running from their pain plans & patients in need because they r afraid of the gov’t threats of invasion. This is more than our issue, ALL Americans should b aware & scared, any guidelines/ agenda can b forced into law b 4 the public knows what is happening!I hope others agree & will write 2 media/ Facebook the public about what is really happening & by letting this continue, it will happen with other issues that will effect them. FAKE NEWS , is the CDC real purpose 4 the opioid guidelines. How can this happen in America?????

Holly

Gosh Fila, I just sat here and cried reading your story. I just cannot believe this is happening! It’s funny but I was just telling my husband I will not vote. Of all the e-mails, phone calls, tweets, all I ever got in response was the form letter stating they will get back to me. I’m still waiting. I will not stop fighting though. I’ve made it thru 5 reconstructive surgeries on my common bile duct by a Dr. who did not know what he was doing..then lost half of my liver, and now suffer from degenerative disc disease.
Stay strong Fila. My prayers are for you and the rest of us that these jerks get whats coming to them.
God Bless…..

Kim

Until someone walks in u r shoes they can’t understand the road u traveled. It’s clear that Jeff Sessions & other gov’t officials,with their superficial nature will never help us until they suffer themselves. It was shocking 2 watch the CDC guiledlines 4 family MDs ,b forced in 2 law, behind closed doors & is now effecting pain specialists & the chronically ill/ disabled. Since the gov’t officials r not listening we need 2 turn 2 the media. All Americans should b concerned & hear our side of the story because if these guidelines can b forced into law without the true agenda being disclosed 2 the public, any guidelines / agenda can b made into law b 4 the public knows it has happened. This is scary 4 ALL Americans!!! The gov’t has created a stigma that any 1 taking opioids is an addict. Crazy, it’s like saying some 1 who socially drinks is an alcoholic. How can this have happened in America???

Tammy hopkins

I’m 51 I have extreme nerve damage in feet and legs and myou Dr Oct 15 2018 my feet,leggs was double in size swollen and now it’s more harder to wask my Dr didn’t look at them and I go on oct29 and I’m going demand medicine all she had to do was sign her name and make a call and she said shearlier didn’t have time the secretary’s will they can’t it says Dr and medcaid&u keeps refusing to give me medicines for it I was with her since I started and now she’s treated me badly they never look at my feet and a day tics Dr supposed to I was on gabprntin 300 for 4 yrs I ask for Lyrica or up my dose of gabetting from 300 to 600 and they say no so I been doing with pain and I live alone please help me!!!!!!!!!! If oct29 she don’t do anything I’m calling the board to report Dr’s I have ssi medcaid&u only

Pete Gierke

i tried to find email addresses for my Republican Matt rosendale,Democrat Big John Testor and who knows how these guys , Greg gianforte got in our Montana because now they wanna sell public lands and all kinds of stuff as long as suits their agenda! I will bet if Rosendale wins the wilks brothers will own the piece of land in the Little Snowies called The Durfy Hills !! WOW ive never heard that Before.!!!!Thank God they caught our latest bomber b4 it cost alife or worse put one in a cronic pain life forever! Now im sad ! Go get our medications back life is to short! These Politicians dont care a bit to even start the talk we so despertly need!

He uses every trick in the book if walk time is not adhered to right on time. Looks me straight in the eye with an energetic wave if his tail. The only exception is when it’s raining, he hates the rain. Put a smile on my face reading the article, thanks.

Martha

This is so sad & completely avoidable. Chronic Pain sufferers of all stripes need to flood CNN, MSNBC & NBC to demand an end to the label: Opoid Crisis. Catchy name….so inaccurate. Let’s call it what it is: Illegal users / addicts of Heroin & Fentanyl. Ask why they don’t have Addiction Specialists like Dr. Martin Cheatle from UPenn who can state with empirical evidence that LESS THAN 5% of C/Pain patients will go on to become “addicts.” That means 95% or more of us are responsible users of pain medicine that allows a few hours a day of lower pain levels. That is the only way we can on some days, actually get a few things done. If your medical Dr. has verifiable medical tests results verifying our pain cause/ condition….then NIH, Senate & DEA needs to stop harassing the sick & injured. Can’t text anymore. Hugs to fellow sufferers & to those who actually understand our living Hell.
Martha

Terry

I’m so sorry that you have to suffer needlessly with CRPS. Amongst my other ailments I also have CRPS, and I’m here to tell everybody, that it is very debilitating. The only thing that ever helps me were the opiates that were prescribed by my doctor for the last 10 years. I was high functioning, social, working, and then the so-called opiate epidemic came to be. I have written my congressman and Senators both a number of times, they show very little empathy and refused to take a stand on the opiate epidemic one way or another. I did tell them that only 1.8% of all opiate overdoses came from legitimate prescriptions from doctors, the rest of the overdoses were from heroin and Fentanyl or a combination of both. It’s such a Hot Topic in our society right now and the General Public feel that we are a bunch of drug addicts who only take pain medication to get stoned. Are elected officials have to go with what their constituents feel is correct. What we need is a champion who will publicly let everybody know what the real statistics are. My CRPS was very manageable when I was taking the correct amount of
opiate. But don’t ever think that an elected official is going to ever go against the public opinion, that’s just the way it is. We will never get our lives back the way it used to be. Our lives have been reduced to just a miserable existence at best. It’s the most frustrating experience of my life. God bless my chronic pain brothers and sisters. Hang tough.

Leonard

I agree they don’t care as their is no money in compassionate care. But I too understand the power of my vote and unfortunately after yesterday’s abandonment of those who suffer I cannot in good conscience vote for President Trump. We are by best guess 80 to 100 million strong. I will reflect that lack of empathy come next week and the next presidential election.

Good day!

FormerPatriot

About the only time reps from opposite parties agree on ANYTHING is when they are doing something to make life more miserable for those in chronic pain. So for whom do we vote when both parties are working so hard to destroy us?

Livia Konta

Bravo for your determination and courage, Fila. Keep up the good fight.
Livia

I’m so very pained to read your story. Elected officials who care so little about the battles facing American citizens, but cry out in support of allowing caravans of illegals to enter need to be exposed.
God Bless You Ms. Paragas

Dear Fila, Your story touches my heart and breaks it also. You like so many others have tried so hard, just to find yourself back home all alone with no help. Thank you for going the distance for all of us. “They know” we’re out here. Your story reminds me of another young man who traveled great distances and was very admirable in his journey as well to try to wake everyone up before it was too late. If you have a chance read about Mr. Robert Rose here on the National Pain Report, his story will astound you. He also went above and beyond the call of duty with no avail, but you can bet that he and yourself have left your footprints on someone’s heart and someone’s mind, even if they won’t say it. I won’t tell my story for I just wanted to say thank you for yours, but I know what it’s like, believe me. Yes, surely one day these people will be struck by their own pain and will have to live and abide by their own rules and laws. I will add your name to my prayer list. Take care for now.

Winnie McDavid

I just got cut down to the 90mg morphine equivalent & most likely will no longer be able to hold my job as a LPTA. I am provider to those in pain in subacute rehab post surgical for 25 years. With fibromyalgia & all the above spinal stenosis/herniated disc type conditions, the meds have masked the pain while not getting me high. I am 67 & always been athletic which allowed me to perform severe stretching routines to fight chronic pain. While true the amounts of meds were very high 15 years ago, the low amount is causing only 2-3 hours of sleep. And we all know the potential outcomes of that. I’m also a masters level trained substance abuse counselor that knows there’s a big difference in being dependent on pain meds and addiction, which falls under disease model. God help the chronic pain community!