Some Kind Of Normal

Some Kind Of Normal

By Suzanne Stewart.

I would like to respond to an article from May 23, 2017; written by Steve Ariens, PharmD, or as we know him, “Pharmacist Steve”.  I want to say “YES, Pharmacist Steve, WE ARE Quite Different”! This week I read an article entitled, “A Country of Drug Seekers” (National Pain Report, May 23, 2017).  In the article, the author, states that “we should look at those who take/use opiates and controlled substances… and consider those that take them legally and those who take them illegally-because our society will not allow them to obtain them legally, and ask ‘Are they all that different?'”

He goes on to say that “both groups are suffering from depression, anxiety and physical and mental pain.” Also that “both are trying to “improve” their quality of life….just that their own opinion/definition of “improve” may be quite different.”

Suzanne Stewart

I will agree that everyone, or the majority of the public want to “improve” their quality of life.  That’s a given, isn’t it? Whether you are a pain patient or an airline pilot, most people want to consistently improve the quality of how they live.  I vehemently disagree with his assumption “are the two groups all that different?”  Nothing is the same about these two groups of people. Persons with chronic illness do not obsessively think about and seek out something to make them “high”. A drug addict has a mental illness, along with an addictive personality; and does exactly that. I’m sure some chronic pain patients also have mental illness, along with some Dr’s, nurses, housewives and Scientists.  I believe the number that research had noted was that less than 4% of chronic pain patients actually become “addicted” to their pain medications.  In fact a very high profile Pain management physician, Dr. Forrest Tennant, M.D. Cited that percentage in an article at NPR, October 2015.  I don’t agree that we “are all suffering from depression, anxiety, physical and mental pain”.  The mental anguish that “we”, the pain patients, live with now days; is from the fact of not knowing if or when our treatments/medications will be withdrawn!  I would say it is more similar to a patient on dialysis not knowing if or when their dialysis facility is going to close and there’s not another one for hundreds of miles!  It may be similar to a Diabetic wondering if their insulin was going to be taken off the market completely?  Then how would they live?  What would they do?  They would be in “mental anguish”.  Without pain medications, (*that some of us have been on for many years, doing well, with little or no side effects); how will we be able to tolerate the unrelenting daily struggle with high chronic pain illnesses?  Some of which are up to a #43 on the McGill pain scale?  There are some people that are living with chronic pain and depression, but we are not all living with pain and mental illnesses.  There should not be a stigma, by the way, to living with either or both of these issues.

I also strongly believe that chronic pain patients who sign a contract with their Pain Management physician, agree to take urine drug screening tests and take their medications exactly as prescribed for their legitimate diagnosis’:  should not be in the same “category” as those who are “abusing” and “using” illegal substances to get “high”.  We, the chronic pain patients are very different in that we don’t all have “addictive” personalities.  In fact, at my pain clinic, I went to see a Pain Psychologist and that Dr. told me and actually put it in writing, that I “do NOT have an addictive personality”.  I may not be the same as everyone else, but chronic pain patients are not the same as drug abusers who use Heroin and cocaine to get a “HIGH”.  We don’t get “high” from our pain medications.  I run several support groups for different chronic pain illnesses.  I have spoken to many chronic pain patients and I can speak for the majority of those who have been taking opiates for several years.  We do not “crave” our pain meds, nor do we think about them all of the time.  We don’t sit around and wait for the next round of pain medications and obsessively ruminate about them.  Mental “Pain” and mental “illness” are not one in the same either, according to anything that I’ve ever read or heard in my lifetime.

I have made numerous videos on my advocacy YouTube channel and I’ve written several articles on the subject of “pain patients being lumped together with drug addicts”.  There is a difference between these two groups of people.  Time and time again I am making memes for Social Media, writing on the subject or speaking about it.  I’m really growing weary of having to defend my community of chronic pain patients against those in Washington and others with authority over us.  When Pharmacist Steve stated that “some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.”  Well, of course we draw a line between drug seeking behavior, drug addiction and legitimate chronic pain patients who need their medications. Drug addicts live for their next dose or next “high”.  While the chronic pain patient needs their next dose of pain relieving medication in order to live.  We need pain meds so that we may have  some semblance of a life outside of our bed or recliner.  There is a “line” between us, it is like comparing “apples to oranges”.  How many times do we, the community of legitimate chronic pain patients, have to fight for our dignity and our separateness from stigmas that are put upon us?  If you want to “lump us together” with a group of people, why not “lump us together” with other medical conditions in which the patient is “dependent” on their medications?  According to Dr. Tennant’s calculations, as a leading expert in pain management; 96% of chronic pain patients do not become addicted to their Opioid pain medications.  Those of us who have been on a regular dose for many years and who are doing well, should be left alone!  We are dependent just the same as a heart patient is dependent on arrhythmia  or high blood pressure medications.  The group of people that we have the most in common with are those who take medications for a chronic illness.  The kind of medications in which their bodies are “dependent” upon in order to live some kind of “normal”.  We, the chronic pain community just want to “live some kind of normal”.  We are tired of being grouped or lumped together with illegal users and abusers of drugs.  We must remember only two words.  These words are “dependence” and “addiction”.  They are as different as night and day, black and white and medication user verses drug abuser.

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 22 comments for this article
  1. Marie Mitchell at 10:31 am

    Your response is accurate, intelligent, and very well written. Thank you for enlighening Pharmacist Steve about some important issues he apparently missed in grad school.

  2. Nicole at 10:49 am

    Not to mention the fact that PEOPLE who have used illicit drugs can also be suffering from chronic severe pain and likely were suffering when they discovered some type of drugs.
    This does not mean they should be dismissed as cons and villains.
    A specialist who understands and deals with the physical and mental side of pain can and have successfully taken people from a high risk lifestyle, done the necessary work up to discover the source of the pain without dismissing them and those same people who so many have labeled as a “junkie” have been law abiding, working class, successful and stable American citizens.

    Open your minds, stop pretending as if you all have some sort of expertise in pain and human behavior and get out of the business of people who are not harming anyone but are being therapeutically treated by those who DO actually have the expertise and experience.

  3. David Cole at 10:45 am

    Thank you Suzanne Stewart, your response to Steve Ariens post was spot-on.
    I only disagree with one thing, that is the true number of chronic pain patients that ever have a problem with addiction is less than 2% and those people had a problem with drugs before they ever became chronic pain patients. The CDC, FDA and DEA all know this, per their Publications. The problem started when the government decided to stick their nose into the medical community. The CDC pics psychiatrist and addiction specialist with an agenda to write recommendations form chronic pain patients. They did this with very little or no input from chronic pain patients or pain specialist. It is now clear and a provable fact that more people have committed suicide because of these guidelines than terrorists have killed people in the United States, with the exception of 911. These government entities all know this. So what would you call a government agencies that knowingly is killing people and or causing severe pain, Agony, depression, distress, anxiety, fear, ect, in their most vulnerable population, the elderly, disabled, Wounded Warriors? I don’t know about everybody else but I would call them criminals, just to be nice. These people in trying to fix a problem have made it worse. For instance, we now have 50 and 60 year olds dying of heroin overdoses, that previously have taken pain medication (opiates) from anywhere from 1 to 45 years never having one problem. Now the biggest problem isn’t people bringing drugs into this country, it’s chemist’s making drugs in this country. The government has now created a new market. Every chronic pain patient who had their pain medication taken away from them or reduced to where they can hardly stand live, is now a new customer to be exploited by drug dealers, gang members, chemist’s. If anybody didn’t notice, prior to the cdc’s recommendation, opiate-related deaths were going down for three or four years. Well now they’re going up and they’re going up significantly. These people won’t even track suicide rates among chronic pain sufferers. Everytime government sticks their nose into law-abiding citizens Business, a disaster happens. As far as I’m concerned these people are committing crimes against humanity, they need to be prosecuted to the full extent of the law. Then there’s a word in opiate-related deaths. That word is (related). Approximately 50% of all the people that died of opiate-related deaths, did not die of opiates. They died from the psychobabble drugs doctors were giving them while they were on high levels of opiates. They are very aware of this situation yet in their guidelines have one or two sentences about it. Far as I’m concerned these people are murdering people.

  4. Bruce at 4:02 am

    The director of my pain clinic threatened to discharge me because I wasn’t continuing to take lumbar pain block shots that didn’t work at all for me previously. Said that I could fill out a hardship request to help pay for the shots, which only covers part of the cost. I told him that the local pain block shots in my ankle had worked somewhat and that I’d be willing to take those. He said that they don’t work!! The guy is power tripping and crazy. I’m in deep trouble. I’m bringing someone with me next time. I can’t take being yelled at again. I’m going to go off on someone, and I obviously can’t afford that. The chronic pain community is so screwed. They treat us like animals.

  5. Laurie at 5:33 pm

    I have trigeminal neuralgia a chronic pain disorder. I have been off and on pain medication for 10 years now. When I don’t need it I don’t take it. When I have been doing better, I lowered or got off the medications at my request. I should not have to suffer because some abuse the system I suffer enough with the medications I don’t see how I could make it without. I also want to say that pain clinics need to stop using Marijuana a reason not to give the medications. I use (legal in AZ and prescribed by my neurologist) Marijuana for my pain also and if it helps me not use the vicodin as much it’s a win to my liver

  6. Nicole Culp at 10:51 am

    Call for Comments to the President’s Commission on Combating Drug Addiction and the Opioid Crisis.

    This is a chance to make your voices heard. The President’s Commission is accepting comments by email until June 15th. Please help us FLOOD their mail with complaints from chronic pain patients. The address is commission@ondcp.eop.gov

    You may clip and edit from the following outline as you write your mail. Delete any of the material that doesn’t apply. PLEASE don’t let this opportunity pass us by. Administrators please pin this post until June 15th

    ========================

    Dear Staff, Presidential Commission on Combating Drug Addiction and the Opioid Crisis.

    I am a chronic pain patient diagnosed with [———————— names of disorders]. I have been managed on opioid medications for __ years, with major improvement to my function and quality of life. I have some pain every day. But without opioids I would be totally disabled and the pain would be unbearable. Nothing else has worked for me and my doctor has tried almost everything.

    I live in daily fear that my doctor will be forced out of pain management practice by the arbitrary and ill-founded policies of our government and the CDC, enforced by the bogus drug war witch hunt conducted by the DEA. Patients like me are committing suicide in increasing numbers because of denial of effective medical care.

    DO NOT MAKE ME ONE OF THEM!

    If the US government is to deal with the opioid epidemic, the first thing you must realize is that managed prescriptions to chronic pain patients didn’t cause the problem. And torturing us by denial of care will only make the mess worse when we must go into the street to get pain relief.

    I am not an addict, even if I must depend on opioids just to live with my pain. The most reliable predictors for addiction are status as an adolescent (an age when few people are treated for pain), a history of family trauma, or a period of prolonged unemployment. These are social problems, not medical ones.

    Please take action to require withdrawal of the March 2016 CDC guidelines for prescription of opioids. The guidelines are biased, scientifically invalid, and actively dangerous to patients and as public policy.

    Sincerely,
    [Your name, City and State]

  7. Anne at 10:36 am

    Thank you for refuting that article. I was mad and upset when I read it.

  8. Nicole Culp at 10:06 am

    Your concerns are legitimate and absolutely understandable.
    The media hype regarding the opiate overdoses is a blatant lie, a form of manipulation.
    Its not the legitimate pain patients who are overdosing.
    The CDC has combined the illicit fentanyl shipped from China and being used the heroin dealer or pill manufacturer to cut their overhead and increase profit.
    Idaho, only last week… 3 people busted by the DEA.
    They were buying fentanyl from China via the dark web and with a pill press had been manufacturing and selling what they were claiming were 30mg oxycodone. Law enforcement found thousands of pills that were only buffer with a touch of fentanyl, the pill press and over 2 million dollars stuffed in black plastic garbage bags.
    Those are the people who prey on the desperate, the young and naive, and have managed to use the internet and mail system to sell millions upon millions of those deadly pills to people all over the country as well as others!
    It’s the failure of the DEA and FBI etc that has caused so many overdoses, not the pain patients and not their doctors.
    Yes there is tiny percentage of illegitimate pain patients being prescribed opiates but by far the majority of the damage has come from the dealers and been allowed to continue and to increase due to the failed war on drugs.
    One of the most ignorant, manipulative, and damaging things our government has done to this country is the war on drugs.
    Keep in mind that your doctor will likely use the new morphine equivalent charts to decrease your medication because he’s afraid… But it is illegal for him to cut you off of your meds cold turkey and if he is using the morphine equivalent standards then he needs to be reminded of the reccomended taper of 10% per month over a long slow period of time and if you’ve been prescribed these medications,especially from him, for a longer period of time it is reccomended and even smaller and slower taper of 5%.
    If I were you, I would get online and find the morphine equivalent recommendation
    and print it out, read it through, bring it with you and if necessary ask him for an explanation of the reccomended dosage charts he’s decided to use and what the taper is in your situation.
    You do have rights!
    Red Lawhern on Facebook is a great place to start! He’s advocating for chronic pain patients and our rights to keep our medication.
    He has media attention as well as political and legal backing… Also read up on or YouTube Dr. Forest Tennant
    This fight is not over.

  9. Nicole Culp at 9:35 am

    This is what my physician calls a drug holiday.
    I signed an agreement/contract before he ever prescribed anything to me that I would agree to this.
    In the past 12 years I’ve done this 4x.
    I am still in on the original dose of long acting medication I began with and have actually decreased the breakthrough meds quite a bit.
    A drug holiday is absolutely in the patients best interest, personally I prefer to consume less of the chemicals with optimal effects that continue to increase my dosages until I’m a toxic zombie that still has to deal with the baseline pain that every person dealing with chronic painful disease and disorder understands they will have to live with.
    I don’t believe that any person lives completely pain free.
    We all have to live with some sort of discomfort, it’s the responsibile physicians who educate their patients and help them find ways to help themselves rather completely depending on any medication.
    Life is supposed to be about trials and tribulations.
    But we 100% need to have the aide of whatever it is that takes the edge off enough for us make healthy choices.

  10. Kym at 8:23 am

    Although this article has good points. It does not have anything to do with the article you referenced. Steve’s article was talking about the state of pain and how both groups of people who have a prescription and those that don’t have one are sometimes closer then we think.

    I’m not sure what sure what was your point in referencing the article, since it did not support nor refute your article.

    Politics and the state of pain, seems to me that people are fighting each other; rather then joining and becoming a greater force for good.

  11. Susan Domokos at 2:31 pm

    As I read your post…I am under a great deal of anxiety and stress… Tomorrow I see my pain manager Dr…I am 30 days clean of marijuana bc if I fail…I lose the rest of my pain meds and will be discharged..Choice..Pain meds or marijuana…My Dr took 4/6 of my pain meds in April bc of mj even though he has known for the last 17 months…I recently called the CDC about this…I received an email acknowledging receipt of my concerns..But I am sitting here scared to death…Afraid of being yelled at again…Afraid of being accused of things I haven’t done like selling my pills..Afraid of being treated like I tested positive for crack instead of marijuana…I don’t have minor pain issues…I have major pain issues that keep me from living a normal life . I can’t take this anymore…And the news stations that I have contacted don’t care about me and my issues…They just care about the heroin users who are dying in my community in Ohio…And blaming prescription opiates for the problems …Maybe if more Drs weaned their patients instead of stopping the meds cold turkey…Some patients might not go to the streets for pain relief…Sorry about the length of my comments…I just want to be heard and maybe someone will answer…

  12. Jean Price at 2:21 pm

    Mark…I agree it’s true those who are addicts didn’t cause our current problem! There have been people addicted to drugs as long as there have been people who have daily pain in their lives! Yet this craziness is a relatively new mindset in healthcare and for the public too! And people who are addicted to drugs certainly didn’t write the CDC guidelines! Nor cause all this ridiculous opioid phobia we see now! People addicted to power, money, and their own skewed sense of thinking they know what’s best for the world…those are the people who have changed the face of pain care and destroyed lives along with it!

    Not the addicts who just want to escape their own private demons! (And who are we to say we don’t have some of the same demons they do…we just may handle ours differently!?) The nightmare is when we are lumped together regarding our CARE NEEDS!! Simple really…we don’t need the same type of CARE. We need pain medicine to function. They need to be OFF of those same kinds of medicines to function! This isn’t rocket science! It should be clear to most everyone! If that was the real issue here!!

    I doubt that it is! That’s why this whole opioid phobia trend makes absolutely no medical or scientific sense at all! That’s why something else besides delivering, safe good pain care and preventing abuse is at the center of ALL of this! And that’s why it’s so very hard to fight! WE can’t fight nonsense with sense…nor can we fight power and greed with sense!! And that’s what I find so discouraging! We are considered guilty…until proven guilty…and this is not how it’s supposed to be! Not in our legal system, anyway!

    Plus…our country is supposedly against torture even for its ENEMIES…yet it seems our government is not against torturing its citizens who live in pain, by deniying appropriate pain medication! Why is this?! I have a feeling they’ll be doing this for a long time to come…because they don’t seem to mind that it doesn’t make good sense! Or maybe they just don’t care! It’s difficult to believe they just don’t realize there is such negative fallout from all of this madness in the form of all the lives that are so hurt and disrupted…and even lost…because of untreated, unnecessary pain!!!

    There’s a point here that all the hard work to poison the medical field and the public’s minds against using opioids…at all…will allow “them” to back off…and the mindset that is being taught now will just continue to perpetuate itself! And that’s scary too! It will become common knowledge that opioids are just bad! They will have then created a self filling prophecy…for those in pain may actually join the ranks of those looking for “illegal” drugs on the street then…albeit just looking for some relief from physical pain! This is really the ugliest side of health care I’ve seen in my lifetime! And it looks like it will take entire generations down with it, before some catalyst creates a change back to sensible pain care!

  13. Carla Cheshire at 1:03 pm

    Makes me so mad! Dr. Klodny was on DemocracyNow this morning speaking about his views on the Opioid Epidemic. I’ve written to DN asking for them to allow a chronic pain patient on their program for our point of view to be heard. This is only fair. If you’re able to back me up on this go to democracynow.org/contact

    Thanks Suzanne for your excellent piece; well written and on point.

  14. Gaiamom at 12:53 pm

    Thank you for this post. I could not agree with your statements more. I’ve taken my prescribed medications for almost 12 years without incident and they allow me to function as an employee, parent and spouse.

  15. Jennifer Matthews at 11:51 am

    My sister has RA and had to seek help from her congressman when Maine government made laws that would have taken her pain meds away. She was in a panic because she would not be able to function without her medication. She is not a drug abuser, she has severe chronic pain. Thank for your article.

  16. Carol at 11:37 am

    I am very impressed with your post. I am 72 and have many chronic pain issues. I’ve been on Oxycontin since the early 90’s, same dose (lowest). This is not meant to be a blanket statement because we all react to our medication in different ways. Here is the way I deal with Oxycontin and it works for me.

    When my medication begins to work less effectively I take one dose out for a couple of weeks. I pick my night time dose, that works for me. When you do this your body adjusts. When I put my night time dose back my body allows the medication to work as before. I don’t have to do that very often.

    Most pain patients ask for a higher doses and that can lead to problems. Has anyone else used my method? It helps make the pain Dr. trust you too.

  17. Michelle at 6:10 am

    Thankyou, thankyou, thankyou!!! I couldn’t have expressed the truth any better!!! 🌸

  18. Patricia at 5:17 am

    Thank you for your excellent letter. As I am allergic to all nsaids, including Celebrex, hydrocodone is the only drug I can use to control pain. The general public needs to understand that we, the chronic pain sufferers, are not the enemy. Why isn’t someone demanding that the pharmaceutical company come up with alternatives? BECAUSE chemotherapeutic drugs are more profitable!

  19. juliette glover at 4:07 am

    Thank goodness, someone who doesn’t belittle my illness. For years I have said diazepam is the only drug that alleviates the acute pain, enables me to pass urine etc. ” but these are addictive ” says every gp, so is morphine, pregabalin etc, yet you give me these on repeat prescription. I argue this countless times – gps, a & e etc etc. Yet I have also proved I can easily stop taking this medication. But why should I justify taking a drug that alleviates pain. Allows me movement, sleep and not to be screaming in pain.

  20. Denise Bault at 4:03 am

    Amen, sister! I’m tired of being made to feel like a criminal when I go into the pharmacy, with a legitimate prescription from a legitimate doctor for a legitimate chronic pain illness!

  21. Mark Ibsen at 3:26 am

    Suzanne:
    Great article.
    There are differences and overlaps between pain patients and addicts.
    Then there is pseudo addiction
    When pain is indertreated.
    In defense of Pharmacist Steve,
    I believe what he was saying is this:
    Both groups have an illness.
    Both groups are human beings trying to deal with cunning
    And
    Baffling problems.
    Both groups are ostracized
    Both groups seek acknowledgment of their pain and anguish
    And:
    Both groups could be treated with sensible
    Scientific
    Compassion.
    And then there is this:
    What is “high”
    What if it was defined as
    “Well being”
    That would change everything.

    The pain community is angry, and should be.

    Be angry at kolodny
    CDC
    Prop
    Idiot legislators
    Medical societies without the guts to stand up for patients
    Addicts are not the reason we cannot get palliative pain treatment.
    Politics is.
    Love
    Em
    All,
    Let
    God
    Sort
    Them