AN OPEN LETTER TO PRESIDENTIAL CANDIDATES FROM A CHRONIC PAIN PATIENT

AN OPEN LETTER TO PRESIDENTIAL CANDIDATES FROM A CHRONIC PAIN PATIENT

By Krissy Anderson

Dear _______________,

There is a serious health crisis that needs to be addressed right away. 

You can help me and so many others live some sort of a normal life if you learn the truth that has been hidden from you about drugs in America.

I am a single, disabled woman at home devoting my time to making sure I can get the proper health care I need now and in the future. I work from my bed, lying down, every day. Two things you should know.

Opioids are not bad.

Chronic pain patients are not addicts.

THERE ARE 100,000,000 (Yes 100 million) PEOPLE IN THE U.S. LIVING WITH CHRONIC, DISABLING PAIN

Kristine (Krissy) Anderson

Kristine (Krissy) Anderson

I work independently as a writer, advocate and researcher, without pay, on the subject of the fair treatment and management of chronic pain. With me are thousands of others — experts like scientists, doctors, pharmacists, authors, publishers, advocates and other professionals — who are keenly aware that millions of people with chronic pain, reflected by distinct, diagnosed diseases, are largely being ignored, under-treated, ripped off and labeled drug addicts. These honest and reliable patients are frightened! Their country has left them for untruths about what pain is, while they live with illnesses that cause severe, unrelenting life-long pain. We will live like this for the rest of our lives!

But you can help!

WOULDN’T A LARGE PORTION OF 100,000,000 PEOPLE WHO ARE ALREADY DECIDED REPUBLICANS, OR UNDECIDED PEOPLE STILL LOOKING FOR ANSWERS, OR HAVE DECIDED NOT TO VOTE AT ALL, VOTING FOR YOU BE NICE?

MY GOSH, I SOUND LIKE A HUMAN ADVERTISEMENT!

There is a good reason for that. Before I became disabled, I was the successful owner of an advertising and PR company, which I started at age 26. I was a tiger on fire, and worked like a dog, winning international awards against companies such as Apple Computer. I loved my work and would never have thought of retirement, but I got sick when I was 30 and it took me from being an athletic, young single mom, to a person who can’t always function on any sort of normal level, except to lie in my bed and do this work on my computer…for free. It took years to accept that I will never work as a marketing communications specialist again, or never take a long walk again and never have any more money than a tiny disability salary.

BUT I AM NOT ALONE. MANY OF MY FELLOW PAIN PATIENTS CHOOSE BETWEEN MEDICINE AND FOOD EVERY MONTH.

DRUGS ARE NOT HARMING ADDICTS, ADDICTS ARE HARMING THEMSELVES

Projects such as the CDC’s proposed guidelines for opioid prescribing is not going to help the drug abuse situation in America, but rather it will make it much worse, so much so that if our voices aren’t heard by you, we all suffer in several ways. The suicide rate will explode (and they will be my fellow patients), and instead of getting rid of the heroin problem, it will become something far bigger than an epidemic. In fact, the heroin “industry” will be part of the new Big Pharma!

Millions of patients are now being denied the only medications that allow them somewhat of a life. While opioids are not for everyone, they are working for a significant number of people. But pharmacists are afraid to fill prescriptions because of the DEA and doctors are afraid to write prescriptions for fear they will be shut down and jailed, as many already have. And our government has made the decision to allow pharmacies only a certain number of opioids each month to fill prescriptions. Is that constitutional? Is it even legal?

“DO NO HARM” has become this:

I HAVE TO HARM YOU BY LETTING YOU LIVE IN #10 PAIN EVERYDAY THAT CAN KILL YOU BY DAMAGING YOUR BRAIN AND YOUR INNER SYSTEMS SO THAT YOU MAY HAVE A STROKE OR OTHERWISE.

YOU WILL LIKELY DEVELOP DANGEROUS CHANGES IN YOUR BODY BECAUSE OF THE LEVEL OF PAIN YOU ARE EXPERIENCING.”

WARNING: PEOPLE HAVE BEEN KNOWN TO COMMIT SUICIDE FROM HAVING TO LIVE IN CHRONIC PAIN.

There isn’t the “big” problem with over-prescribing as shown in the media. That problem is a very minimal element in this crisis. In fact, there is a problem with under-prescribing and under-treating. Doctors are under serious and unfair scrutiny when all they want is to do their jobs and help people get well and feel better. Patients are being treated worse than animals. For example, would you pass by a dog that was just hit by a car and the dog was in obvious pain? (Maybe PAIN PATIENTS should go lay in the streets until we get some help.)

MANY PATIENTS ARE ANGRY, FRUSTRATED, FATIGUED AND STRESSED.

(Fatigue and stress complicates chronic disease and actually harms the body.)

What will you do to help 100,000,000 diseased people? Growth in chronic disease and pain is attributed to many things. I am not a doctor and cannot comment on that except to say that a large portion of the baby-boomer generation is getting older, and therefore sicker, and many have already been ill for 15, 20, 30+ years. If government wants to play doctor, the CDC and the DEA are not going to be the doctors we need! In fact, the shortage of pain management physicians goes like this: If each of or our pain management doctors could treat every patient in the U.S., s/he would have 40,000 patients!

THAT IS WHY YOU HAVE TO LET FAMILY DOCTORS PRESCRIBE PAIN MEDICATIONS AND QUIT SHUNNING THEIR RIGHTS AND SHUTTING DOWN THEIR PRACTICES.

QUIT TAKING AWAY THE HUMAN RIGHTS OF PATIENTS TO BE TREATED FAIRLY.

QUIT ALLOWING NON-MEDICAL-PROFESSIONALS, LIKE COPS AND DEA PLAYERS, TO PLAY DOCTOR.

QUIT ALLOWING INSURANCE COMPANIES TO TELL PATIENTS WHAT THEIR DOSE SIZE OF A PRESCRIPTION IS!

AND PUT THE CDC BACK WHERE IT BELONGS — TO FIND CURES FOR THE MILLIONS OF PEOPLE — INCLUDING BABIES AND CHILDREN — WHO CONTRACT DEADLY DISEASES, TO FIND NEW VACCINES, AND TO PERFORM THE JOBS THEY WERE FOUNDED FOR.

LET OUR DOCTORS TREAT PATIENTS’ SYMPTOMS LIKE THEY VOWED TO DO WHEN THEY TOOK THEIR OATHS.

Please, please LEARN about what is really going on.

The CDC, DEA, etc. have lumped numbers together so that patients in chronic life-long pain, who do well on opioids, who are not addicts and who do not abuse their medications, are depicted in the SAME CATEGORY as those who are addicts, heroin users and Rx abusers.

Do you know that the numbers the CDC reports on PEOPLE USING OPIOIDS — LEGALLY OR ILLEGALLY — AND DEATHS RELATED TO DRUGS are completely wrong? These numbers even count one person’s death as being two or more people if there were two or more reasons why they died! Chronic pain patients are included in these numbers along with addicts and overdosers. Then they report these numbers in their press releases as “drug abusers and addicts!” THAT IS UNACCEPTABLE.

People like me are responsible about our medications, never abuse or take a pill early, never “doctor shop,” never try to fill a prescription early and never, ever go to the streets to seek heroin. But if our opioids are taken away, who knows how many will turn to illicit drugs? Sad, isn’t it?

Of course we have to address the addiction situation with a better eye also. Those of us working on this subject are well-aware of the needs for better addiction programs and care, but right now we must focus on keeping our medications available in a fair manner, keeping our doctors in business and keeping our pharmacies from feeling like criminal organizations.

I suggest your medical research team go to a website called the National Pain Report and read its articles. There is a category called “My Story.” Read some of the stories from real patients, and pay particular attention to the comments after the articles. Start there to learn what you need, and call on me for help to get more information. Pain patients are a large nationwide team. We are on duty and on call. Our members can give you all the information you could possibly need to make it faster and easier for you to get up to speed, not only to gain those millions of votes, but to be heroes for ill people in pain who don’t have much to look forward to.

This will allow you to:

COME OUT AND BE THE CANDIDATE WHO KNOWS WHAT HE’S TALKING ABOUT

FINALLY ADDRESS THE PATIENTS IN THIS COUNTRY WHO HAVE BEEN LEFT BEHIND

LEARN THE TRUTH ABOUT WHAT’S REALLY HAPPENING WITH OUR WOUNDED ARMED FORCES MEN AND WOMEN.

(THE NEGLECT THAT IS GOING ON AT THE EXPENSE OF OUR VETERANS IS UNFATHOMABLE. THESE PEOPLE SERVED OUR COUNTRY TO KEEP US SAFE

AND THEY ARE NOW SUFFERING IN PAIN BECAUSE THE VA’S PRACTICES

ARE ABSOLUTELY AND STUNNINGLY RIDICULOUS.)

Since the “war on drugs” started, we all know that it has failed over and over again and even made the problem in our country far worse. You must know that an addict or a reseller will always get their hands on drugs.

Pain patients DO NOT GET HIGH and do not want to take drugs.

Many of us are fighting tirelessly for hours every day to reach out and find someone to listen to the truth about prescribing pain medication.

But who is going to recognize the real problems going on in my country?

Will it be you?

I sure hope so.

From the bottom of my heart,

Krissy Anderson

Krissy Anderson is a 62 year old Florida resident who writes and advocates on chronic pain issues.

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Authored by: Krissy Anderson

There are 57 comments for this article
  1. Steve P. at 12:53 pm

    Today I received an email from Senator Richard Blumenthal that he wrote personally in regards to a letter I had sent him pertaining to H.R.471, the Ensuring Patient Access and Effective Drug Enforcement Act of 2015. I had used elements from the letter that Krissy has so generously provided and an explanation of my own story. In short, Senator Richard Blumenthal listened. The text of Senator Richard Blumenthal’s response is below. The Pain Community appears to finally be making progress, please also refer to the National Pain Report story regarding President Obama’s stance regarding patient access to medication (http://nationalpainreport.com/op-ed-obama-gets-it-right-on-opioid-access-8829657.html).

    By writing our representatives in the government, we can get them to listen!

    8<——————————————————-
    Dear Mr. Posick,

    Thank you for your message regarding H.R.471, the Ensuring Patient Access and Effective Drug Enforcement Act of 2015. I appreciate hearing from you.

    I have dedicated my career to fighting for Connecticut's interests, and I am pleased to continue this focus as a U.S. Senator.

    My top priority in the Senate is working on issues that will benefit our state and the nation as a whole. You have made a compelling argument regarding H.R.471, the Ensuring Patient Access and Effective Drug Enforcement Act of 2015. Currently, this legislation has only been introduced in the House of Representatives, and there is no similar legislation pending in the Senate. However, please know that if I have the opportunity to review or vote on legislation related to H.R.471, the Ensuring Patient Access and Effective Drug Enforcement Act of 2015, I will be sure to keep your views in mind.

    Thank you again for writing. Please feel free to reach out to me with any future questions or concerns.

    Sincerely,

    Richard Blumenthal
    United States Senate
    8<——————————————————-

  2. Jean Price at 12:06 pm

    Steve…thanks for both your informative comments and also your diligent work on our issues. I would love to see a Foundation article to us about the places they and various pain ambassadors are working…I think that might give some hope to people with chronic pain who often can’t get out and “campaign” for humane care and the use of opioids. I have seen a few things on FB from them but it is hard to see the whole picture from that. Again, thanks for the good work you are doing as a pain ambassador and please pass along this comment to the foundation for more communication by way of a brief article to us about their various endeavors. Anything they are doing needs to be highlighted in some way! Blessings on the forum in Connecticut. (Are you actually part of presenting, and are other representatives with pain on the discussion forum?)

  3. Kristine (Krissy) at 9:32 am

    Steve P.
    I know you have done some work with my letter, but I am also a US Pain Ambassador and would like it if you will add me to your email list to keep me updated about this. I don’t get enough information as it is now.

    Thank you,
    Krissy

    Emails: 30yearfreelance@gmail.com
    kandiapple.mac@gmail.com

  4. Steve P. at 6:22 am

    Hello Jean,

    The U.S. Pain Foundation is following up with politicians and attending local and national events relevant to the Pain Community. As a Pain Ambassador for the U.S. Pain Foundation I have written and am maintaining a generalized copy of Krissy’s letter for others to use and I will be using the letter and other information gleaned from various National Pain Report posts in an upcoming Forum on the “Opioid Addiction Crisis” being held in Shelton, CT by Representative Jason Perillo.

    “A Community Discussion on Connecticut’s Opioid Addiction Crisis” being held on March 3rd at 7:00pm at the R.D. Scinto Auditorium, 1 Corporate Drive, Shelton, CT 06484.

    The U.S. Pain Foundation is engaging Representative Perillo to be added to the Forum’s panel to represent the Pain Community, but is meeting resistance.

  5. Kristine (Krissy) at 8:40 pm

    Hi Jean: Please, if you have time and know others who do, use the letter and just fill in the blanks (except one mistake where the word “democrats” appears may or may not have to be adjusted). I am exhausting my time right now having taken on so much, and doing what I can, but aside from a group of people I am in contact with via email, I only have Facebook. The letter did make its way around FB pretty well (in the tens of thousands), but I highly doubt many people actually used it and did anything. And like you said, our messages are mainly getting to other pain patients, which is wonderful for support, but not so great for attempting to educate others. I know some people have really worked hard, and still do work really hard every day, sending letters to senators, P. candidates, health organizations and other parties. We all have to do it and encourage others that we know to also work at it.

    Thanks,
    Krissy

  6. Jean Price at 5:10 pm

    Krissy…thanks for updating us and letting me know the journey of your great letter. I have to say I’m confused about the Pain Foundation’s role in advocating for us by distributing some of these great letters and comments. I guess I thought they would help keep the ball rolling on your efforts to inform, and I’m surprised and disappointed they didn’t! If our letters and stories are only heard by others in chronic pain, isn’t that like preaching to the choir and leaving out the people who need the truth….the people who will regulate our lives into a downward spiral unless we reach them?! I think this would be great to send out to every member of congress, too. And with the Foundations heading plus a short phone call to let them know it was coming, perhaps they would read it and had a staff person contact you. Perhaps this isn’t the Pain Foundation’s mission, but I thought it was. Maybe other pain oriented organizations do this, but I’m not as well versed on those. Perhaps the Pain Report sends out information to our government. Does anyone know other places this could make an inroad? I’m sure you can sense my frustration…you wrote such a good piece and I want it more widely read! Sent out to newspapers to pick up as PSAs, to medical schools and nursing schools…and all in government at federal and state levels. I’d wallpaper the metro bathrooms if that would help us!! (A little humor, in case any one is worried about me!)

    I visited my pain clinic today and my doctor made an interesting comment when we were discussing some of these issues. He said clinics and physicians affiliated with hospitals, i.e. Onslow Pain Clinic, or Onslow Memorial Orthopedics,
    are assigned a CFO to address what’s needed to keep the practice profitable, and using hospital services does that. So the injections, MRIs, PT, and other modalities are the money makers, just prescribing appropriate medications aren’t! Our new physicians may have a financial component then, to dismissing the need for appropriate pain medication. Most of us have run the gamut of trying every possible treatment. Although some do work sometimes, medication is still a reliable therapy to be used in conjunction with the others or even by itself when other modalities have failed. If the medical mindset is based on profit…generic pain medications won’t help them and we have another stumbling block besides addiction in the way of our care to relieve chronic pain! I hope this isn’t true, but it begs the question. Well, no solutions …only ideas and opinions and frustration. Keep on keeping on, I suppose.

  7. Dorian W at 11:38 am

    Sorry Folks
    With all of the letters weve written, all of the comments weve made and all of the time writting the CDC and politicians. WE HAVE JUST WASTED OUR TIME AND VALUABLE ENERGY. We are the only ones that care about each other. We are the only onse listening because were all in the same boat. Yes there are some Doctors and authors that have written about our plight, but those that really matter just dont givie a hoot.
    The only way we could be heard is if we pick a few strategic spots around the country and protest. that is the only way the media would get involved and people could see us in person. They will get their way if we do nothing. we will lose our medications and more of our doctors will quit.
    If anybody is willing to do mre then write letters lets do it!

  8. Kristine (Krissy) at 8:22 am

    Jean, the only response I got from the Sander’s team was a short email that was specific to my article (so was not a form letter) that this person would immediately get the info to the right person. But it ended there, so I need to get back to her and see if I can go further with this.

    I did not receive any support from anyone other than friends and some professionals I know who helped to spread it on Facebook. If it was spread otherwise, I am not aware of it. One of the comments here involves a man who was re-writing it for use by others and has it at a link provided in his comment. I don’t know whether he actually sent the letter out to any candidates. There were some people on FB who wanted to use it also, and I hope they did, but I don’t have any feedback there.

  9. JeanPrice at 10:59 pm

    Krissy…I’m interested to know what kind of response you’ve received to date, and if the Pain foundation helped with spreading your article further. I know they would have a few arenas to air this type of I formation…guess I think they need to help us in this way also, and was just wondering if they had! Be a shame to waste such a powerful testimony on life with chronic pain!! We need to be heard and this coupling with abuse ended!

  10. Chris at 4:24 am

    Krissy
    THANK YOU!!! For a solid 16 yrs, and truth be told so many more. I have been through so many of the experiences. “Jumped through the hoops,” Do not care for drs. Love Nurses. My Nurse Practitioner, who also knows chronic pain, has been a Gift from Heaven, for many, many years now. I read these stories, my heart goes out to all, I hear all the propaganda sprinkled w/ hints of truth from the media, and then the candidates started to speak. So your letter at least shares the Truth to them, they will not be able to say,”I never knew.”
    Lord Bless
    Chris

  11. Kristine (Krissy) at 9:40 pm

    Steve, where is your letter located. I would like to read it too.
    Thank you!

  12. Steve P. at 8:40 pm

    Pamela,

    I hope you don’t mind, but your comment beautifully states in graphic detail exactly how many of us in the pain community feel. So I have quoted it in the copy of the letter I have made public for people to use, edit, share, and use however they want for the aid of the Pain Community. If you object to my use of your quote, please let me know and I will remove it.

  13. Pamela at 5:00 pm

    Great letter I’m not an addict I’m dependent on my opiods! An addict steals, lies, and cheat the same very doctors we goto. If my opiods became unavailable I still would not become an addict because I was raised to do the right thing and suicide may not be the right thing but that is what I would do because when you have CRPS and can hardly walk with opiods I have then become a nothing in a society! Which that tells me my government, and people in general don’t want me here so I’ll make sure it’s known that I killed myself because my government gave up me and made me feel useless. Thank god I have not had any problems getting my medication like some of you and I have a Dr that understands my pain but to is regulated by the government. Dr’s have the degree and the CDC is made up of ass kissing doctors that think their doing good for the sake of young kids not being policed at schools where the heroine is wide spread which remember our own government took over long ago and these are the effects of failure!

  14. Jana Hamik at 7:39 pm

    Beautifully written letter. Perhaps this video: https://www.youtube.com/watch?v=g-W4DvP0qQg will help give lawmakers some insight into the type of stigmatizing attitudes and lack of care that chronic pain patients are encountering in healthcare settings (primary care, emergency care, etc) when they seek out care for their chronic pain or when they develop a separate acute pain that typically would be treated with an opioid.

  15. Fred Brown at 10:57 am

    Krissy Anderson did a very nice job outlining in a very honest and direct way that we as a nation have a chronic pain problem. We as a very large group must follow through with whomever the candidate is who takes the oath of office as President of The United States.

    Fred Brown Founder
    Legitimatepainpatients.org

  16. Kristine (Krissy) at 10:26 am

    Dave, I believe we should continue to use this letter and not make it into a petition at this time. It can certainly be copied to Balyntine, et. al.

  17. Sean at 9:52 am

    Steve P the DEA budget shows how much comes from annual seizures. Also the US Marshals get a cut. Look at properties they have for auction generally its close to 50%/of total budget from small dealers. Consider they bought 85million in practice ammo last year. The number I got 10 years ago locally was $24 million in an area that only had 300 lbs of coke and 12,000lbs of weed confiscated on less than 190 arrests.

  18. Sean at 9:42 am

    Forgot to ask likely the wrong area but is anything better than Duragesic patches 125mcg every 72 hours with oxycontinER daily for breakthrough plus Valium for the tortocolis Discs from c3-t8/are herniated or broken chipped. L5S1 has had 2 laminectomy and I also have degenerative disease plus spondyolytis. Had C3-4-5/fused due to loss of function @ time. Caused a Lupus flair.I was unaware I had.4 epidurals did not work better than P.O. steroids. Lately since being rearended by a texting drunk. While stopped at a light pain.is increasing had it steady at 6-7 now almost a constant 9-10

    If my Son would not get the insurance I would permanently fix the pain..Tried yoga, biofeedback, Chinese medicine everything. Chiropractor saw MRI refused to touch me. Any suggestions before I show the candidates what the CDC, DEA bullcrap has brought me to?? My neurologist has given up even & said if I were in South America he’d give me the bypass code & admit me on a morphine pump
    He understands the pain but has nothing we have not tried or that he’s afraid of the FEDS.
    It’s killing my son to see the pain, my wife just thinks being a big baby. She’s not aware I removed her from insurance beneficiary.

  19. Dave at 7:30 am

    IMHO this petition would be more effective if sent to the medical organizations that worked with the CDC to create the opioid guidelines. I think they will be a little less likely to view the petitioners as a burden to society and are expected to have a better understanding of the needs of the petitioners then government.

  20. Steve P. at 5:50 am

    Sean,

    Do you know of any website or database where we can find the DEA seazure statistics? That would be great information for the letter template. Proving or pointing out that these actions are out of greed.

  21. Sean at 12:10 am

    My neurologist prescribes close to keep me at an 8. I have 17 herniated discs, tried the implant punp & tens stimulator no relief. Fentanyl patches oxyconton & Valium for Tortocollis.

    Everyone tells me to smoke weed, even legally I wouldn’t. Took a year to quit.Marlboro cold turkey. The only thing he has to offer is more surgery 5 so far & methadone. As a former LEO injured on the job I can tell you the DEA makes too much $$ off of seized property to go after real dealer’s. Doc’s are safer & easier to hit.

  22. Michelle Harford at 11:35 pm

    Thank you Krissy for such an eloquent depiction of what is taking place across this
    Country. I myself have become proactive in raising my voice. At times I feel fearful, but irregardless I feel it’s right. The worse that could happen, is already in motion. And if every voice of the 100 million is
    raised, we will get the action we deserve. The Government is acting like a spoiled child. Stomping it’s foot with unreasonable demands. whining & screaming; I WANT WHAT I WANT! AND I WANT IT NOW! With juvenile actions that create criminalization on the backs of the sick & infirmed. Through unreasonable contracts, urinalysis & child like cartoon pain graphs. What kind of government have we become? These actions are certainly not that of a free democracy. A society that is about freedom & democracy, looks after those who suffer. Especially those who fought for its freedom & democracy! This is not the America I’ve known & loved. I don’t know her like this. And it breaks my heart as well as infuriates me.
    God bless you Krissy for all your doing. And God bless the National Pain Report. And everyone whose become a proactive voice in this crusade.

  23. Kristine (Krissy) at 9:54 pm

    We are friends on FB already. I have Krissy Anderson (my personal page) and Retired on Pain (my personal pain page).

    Thank you!

  24. Kristine (Krissy) at 5:35 pm

    Scott Michaels, thank you. I was just thinking of the subject of getting people to take a few minutes and take action. It’s a hard thing to do. I am hoping people will have faith that letters in numbers, as you indicated, work.

    Copy and paste this letter, fill in the blanks and send. Write your own. It doesn’t matter. But we need large numbers of people to make their voices clear.

    Krissy

  25. Steve P. at 5:07 pm

    Scott Michaels,

    I posted a basic template, which I will continue to work on and add more information, located at https://dl.dropboxusercontent.com/u/52404720/LetterToPresidentialCandiadates.docx

    Everyone is free to use the document and edit as they see fit and add a description of themselves to the letter. Any and all feedback regarding the letter and how it may be improved is welcome.

    In addition, anyone interested in commenting directly to one of the Senator’s fighting to limit access to opioid pain medications should review and comment to https://twitter.com/SenBlumenthal/status/694221309518180352

  26. Anne Fuqua at 4:47 pm

    Amazing job. We’d love to have you in FIGHT FOR PAIN CARE ACTION NETWORK! You can find me on Facebook as Anne Fuqua. I have a pink bandana on in my picture.

  27. Kristine (Krissy) at 3:42 pm

    Michelle: I am hoping to become more involved with them also, meaning I sent my info in recently. I will have to see if they are interested in communicating with me and what role I might play, if any. They probably already have the people in place who do the same kind of work I do, but I will support them any way I can. Thank you.

  28. Scott michaels at 3:29 pm

    EVERYBODY THAT LIKES THIS LETTER PLEASE SPEND 20 MINUTES AND DO THE SAME. IM SURE YOU CAN EVEN USE HER LETTER FOR IDEAS AND QUALITY OF SUBSTANANCE. ASK YOUR FAMILY AND FRIENDS TO DO THE SAME UNFORTUNATELY THEY WONT PAY ATTEMTION TO 1 LETTER. THEY START TO PAY ATTENTION WHEN HUNDREDS ON THE SAME TOPIC START.COMING IN. NOBODY WOULD BE AGAINST us if they knew the facts and had the truth

  29. Michelle Ziemba at 2:22 pm

    I know there are many pain groups, but US Pain Foundation seems to be a large enough, established organization that’s doing a lot of awareness and advocacy work. I’m starting to become more active there, so if anyone is interested in seeing how that goes, feel free to contact me at: michelle.ziemba@yahoo.com. Perhaps this might be the group we can support and work with to ensure our voices are heard.

  30. Kristine (Krissy) at 8:57 am

    Steve P.

    Thank you for adding some things I missed. As you know, it would be easy to write a veritable brochure!

  31. N Robinson at 8:09 am

    I promise you this, with the insurances continuing to deny the pain medication that my certified Pain Dr prescribes, limits the amount allowed, the pharmacies never having enough to give you your meds unless it’s the full scrip, and still being in agony since 1991, the thought of actually going to the streets for drugs and becoming an addict that they say will happen any way, gets closer everyday. They have have no idea what they do to people with legitimate pain when they don’t treat them properly..we get sicker and either become desperate or worse, give up. And “They” are people who do not have chronic or terrible pain or they wouldn’t do this. Careful, carma’s a bi#/h.

  32. Kristine (Krissy) at 4:35 am

    I posted answers to questions last night but I was very tired and may not have done it right. I’ll check later, but to Donna and M.C.T., the “Republican” in the story should have been taken out and made blank. It was accidentally left in because this was a real letter that I wrote to a Dem. candidate. The letter is meant to be an example published here, and anyone can use it, change it, use it as a guide, etc. Sorry for that mistake, but it was just an error and not meant to be left there.

    I’ll address other questions during the day today.

    I also wanted to thank you all for your comments and ideas.

    Krissy

  33. Kristine (Krissy) at 9:59 pm

    Thank you everyone for your wonderful and compelling comments. I will address questions as best as possible.

    First, to MCT AND DONNA. Re: the part about the Republicans. I had written this letter to a Democrat and the editors and I completely missed making that comment generic for this publication of my letter. This is an open letter for everyone to read or use. Please ignore that and if you want to use my letter or part of it, change any part of it and use it with your own candidate of choice. It’s just a simple mistake and I thank you for pointing it out.

    Second. Anyone who wants to use the letter and fill in the blanks, or use it as a guide for writing your own, have at it!

    Third. Look at Brooke’s comment. Google your government’s representatives. It is a cinch to get their emails. Write letters, cite numbers and be bold to the point where you may feel a little ridiculous! The main reason people do not get responses from government reps when they write letters is because the letters are not compelling enough. Be bold and a little crazy!

    Forth. Jami, about a petition. There a several out there and I don’t know how well they do. I haven’t researched that and I hope someone is out there who could break that down for us. We can’t tie petitions to the National Pain Report or other media since they are obligated by the standards and ethics of reporting to be of a non-opinion entity unless they are writing editorials, which is why they are called editorials. Some media differ, but there isn’t one out there big enough to make the engine run. I believe that before any more petitions are made, a unit of one voice has to be made. In other words, there are too many petitions, too many Facebook pages and too many people going in different directions, but all wanting the same thing. If I (and the wonderful professional people I work with) could get together a “one-voice” organization, we all ready would have. If you and millions of others would be interested in helping with a one-voice platform we’d have it made, but like I said, there are millions going in their own direction and it has watered down and spoiled things. If word could be spread and people would come together and stop trying to be heard via their own FB page or website, I’d head up that thing in a New York moment! I have two personal FB’s and one is just for the subjects we are talking about here. If you want to talk more, please comment again here or visit “Retired On Pain” on Facebook. (This is NOT an advertisement and my page is not seeking numbers, just chronically ill readers like everyone else.)

    Thank you again for your comments. We all learn from each other and that has made us grow in our efforts!

  34. Janet Warren at 9:58 pm

    I, too, have been in bed all day today because of pain. The opiods help a lot for when I have to shower or brush my teeth. My 85 year old husband is my best advocate when our insurance company changed what meds to allow and Walgreens wouldn’t let me have all the pills I have been on for a long time. I am 77yo and I have been fighting my severe pain battle for 26+ years. It is very hard on my dear husband of 58 years. These battles affect others not just the patient. He has his own health issues Thank you for writing this. It is spot on!

  35. Amy Vallejo at 8:57 pm

    Thank you for telling the debilitating chronic pain side of the OPIOD story and how doctors and pharmacists treat us. What we endure is worse than prisoners of war. Please look for a #CRPS documentary in film festivals near you called Trial by Fire by Charles Mattocks

  36. Donna at 6:22 pm

    MCT–hopefully Krissy will post an answer soon. Perhaps this is just one version being sent out to Republican candidates, with another version being sent to Democrat candidates? I don’t think it was meant to exclude anyone. Please don’t throw the baby out with the bathwater. The letter is valid overall IMHO. I just hope it gets some attention.

  37. Sherrie Harris at 6:19 pm

    I so agree with you on the liquor. Needs tougher restrictions badly. As a true chronic pain suffers we just get ignored. We are under treated never out of pain but pharmacy will run out if meds there will be back orders on them. It’s so frustrating trying to make it just bare able. Hope and pray it changes. We need change bad!!!!

  38. M.C.T. at 5:01 pm

    Whats with this sentence? “WOULDN’T A LARGE PORTION OF 100,000,000 PEOPLE WHO ARE ALREADY DECIDED REPUBLICANS, OR UNDECIDED PEOPLE STILL LOOKING FOR ANSWERS, OR HAVE DECIDED NOT TO VOTE AT ALL, VOTING FOR YOU BE NICE?”

    Only Republicans are chronic pain patients? Or, only the Republican candidates are worth writing to? Republican’s are the ONLY candidates that are running? I don’t get it.
    Personally, after reading that the whole article turned me off.

  39. Cynthia at 3:26 pm

    What a fantastic statement you have written! I sure hope it gets read by the powers that be. Thank you so much for writing it.

  40. Mary Asbury at 2:23 pm

    Kristy,
    You are so right you have said what I have been feeling but my mind (due to my illness)) cannot express it the way that you can.
    I have been in chronic pain since 1998.
    What can I do to help get the word out?
    Can I forward this message to my congressman in Indiana, if not, who shall I send it to
    Thank you so much for saying exactly what I have been saying since I have been having trouble getting the pharmacies to fill my prescription.
    I have been talked to like I am a piece of garbage by several pharmacies
    It wears me out more day to day. I worry about having to come off my meds all of a sudden.
    I am not a drug addict but it scares me at the thought of how much pain I would be in if I wasn’t able to get them because the pain pills do not get rid of all the pain but the definitely help.

  41. Barbara at 2:08 pm

    Thanks Krissy for writing exactly what chronic pain patients and some doctors think ! This is the truth. Whats the reason for the CDC,DEA fudging the facts ? Just follow the money trail . Thats all it takes folks !

  42. Teresa Haney at 12:57 pm

    Ms Anderson thank you for all the work you do for us. This letter is very well written. I am a 54 yo single woman disabled from acrachnoiditis. I got arachnoiditis from an epidural injection given incorrectly during the birth of my daughter. Can I use this letter as a guideline? I’d like to help in our battle and I’m not quite as articulate as I was prior to living in pain.

  43. Felicia Timoteo at 12:44 pm

    This letter is so dead on point it needs to be read by everyone. Is there anyone out there with influence who even cares? I have asked the same question how can this be legal? And although there is no way to find out I wonder how many people have committed suicide because we can’t get help with our pain and how many people actually has turned to street drugs because we can’t get help legally?? The one thing the letter neglected to mention is how poorly some patients are treated since this all went into effect by the medical professionals partly because of the pressure they are under because they can’t prescribe and because patients who get angry because they can’t stand living in constant pain.

  44. Jami at 12:08 pm

    Thank you so much Chrissy. As another that has to spend the majority of my day in a pain prison lying down, I appreciate all of your efforts more than you can know. Because so many of us find it difficult to type when using phones and iPads, it would help so much if after we read an article like this we could somehow copy and send, as in this case to presidential candidates. If we did, would candidates hear us? If this was linked to a petition for each candidate it would make it so much easier. If every article at the National Pain Report that was about this topic linked to a petition would it make a difference? Are petitions effective? There are, as you said millions of us in pain, and we don’t have the ability that you and other writers have, but we want to add our numbers to your message. If not petitions, is there an easier way? We have to make more noise somehow, but it must involve just a few keystrokes that people in pain can make with little effort. Are there any IT people out there that have any ideas? Again Chrissy thank you. Although you may not always hear from us, we are cheering all of your efforts and other writers like you!

  45. Kenneth Crosby at 11:33 am

    Thank you so much for writing this Krissy. I am also a chronic pain patient who has many times had trouble getting refills of my pain med’s due to pharmacies not being able to have enough in stock. I have been fighting lower back problems for over four years now and if living in chronic back pain was not enough, not being able to get my refills on time just adds to the torment of living in pain. I take my med’s as directed by my Dr and while they help I still live in pain.
    I have had surgery to have implanted devices to help with my pain, including a Spinal Cord Stimulator and the a year later a Interthecal Pain Pump. Yet even with the help of these devices I still have to rely on Opiate pain med’s to get through my day and to be able to walk short distances. Without my devices and my med’s I would be trapped living in my bed not able to have any semblance of a normal life.
    Please help the millions of us living in chronic pain to be able to get the med’s we depend on so we can try to have some sort of quality of life.

  46. Sherrie Harris at 11:22 am

    I completely agree with everything you wrote. You and I pretty much are living this horrible pain filled days and endless fatigue. I am very glad that you took the time to write this. I was in on the call with the CDC where they are making the “board” about us and pretty much put more restrictions on us, but I got to voice my opinion. For one there needs to be true chronic pain suffers patients on this board. How can they understand just what we go thru in one day. They couldn’t handle it I bet. All they said was,Thank you for your comment. That’s what they said to every pain patient that called in and listen to the whole thing which really doesn’t make sense to me. I have trouble getting my medication every month. I had to go to mail order thru insurance because of the way they make you feel and talk about you. I have been waiting for medication and listen to them “pharamist ” talk about the people he was filling their medication and calling them “junkies “. A true chronic pain suffers do not run out of our medications because we know exactly just how bad it will be for us. I was stricken with this at 36 now 50 yrs old get treated like a junkie on the street. Thank you for writing this. If you know whom or tell me whom I need to write to I will. I wrote my Senator but have yet to hear back from him.

  47. Blair Miller at 11:06 am

    As a chronic pain patient with stage four non Hodgkin lymphoma and sarcoidosis fibromyalgia cfsids degenerative disc disease &,degenerative joint disease plus more I’m tired of being treatea drug addict

  48. Kim at 10:12 am

    Awesome letter and thanks for taking the time to write. I wonder If we r going to go this way as a country, maybe we should reevaluate the adverse effects of alcohol and more control and restrictions on it.

  49. Brooke at 9:36 am

    Great letter, Krissy! Everyone should be writing the major candidates to make them aware of this issue. I’d be curious to see if any provide a compassionate response. Google the candidate you wish to contact and you’ll find their campaign info and email links. Let’s flood their emails with chronic pain patient letters!!!

  50. Carla Cheshire at 6:46 am

    Well put Krissy, thanks. I’m visiting Florida to be with my 88 year old Mother and get out of the cold, snow of North Carolina for 4 months. I had a prescription from my out of town doctor for Fentanyl patches and had one hell of a time getting it filled. I had gone to Walgreens as my new Medicare Rx advised me was their preferred provider. I had gotten the Quantity Limit Exception OK’d where I am allowed more by my insurance company and given the pharmacy my Doctors phone number and information. After a week they were not able to procure my medication. I went to CVS where I had a history and they filled it in 3 days. There is some kind of a limit per facility (?) on opioid medications. I have never encountered this before. What are legitimate patients supposed to do? Lay in the street and cry for help? How is the amount of opioids decided for a certain area? What about Florida where people come from all over the country and world for that matter as tourists? How are they to deal with this issue? If someone has more information please enlighten me.

  51. Scott michaels at 5:25 am

    please feel free to add my name to your letter. i agree with everything you said

  52. Mark Ibsen MD at 3:50 am

    Articulate.
    Right on.
    Well said.
    It’s a manifesto to transform medicine and health.
    Thank you for this contribution

  53. Christiane Weihermuller - Parsons at 3:45 am

    Krissy,

    I, myself have tried to speak with several senators and representatives and the response has usually been to tell me that I do not have an idea what I am talking about. When I pull out proof I am told that there is no way the CDC or DEA are wrong in their numbers or methods of doing thing. I was diagnosed with CRPS just about a year ago but I dealt with the pain for years before that, and yet I am told that I have no idea what pain is and that I have to be wrong. I will not give up though. Somehow I will figure out a way to make them listen. I will continue to talk or yell or scream if that’s what it takes to get them to listen. We as patients cannot give up.