I’m not sure how I should present this. Do you want it kind, sincere, and respectful, or do you need it blunt, open and firm? Do you want it me for you, or you against me, us? Do you want it white or black? Love, care and light or a little profanity to remind you that the world isn’t one way or the other?
You can judge me, you already have. Maybe you need something to judge me for. I refuse to allow you to add me to any negative category. I’m not a little kid anymore and I won’t be silenced because you think your ideals are above someone else’s. I’m heading on 50.
I’ve been on and off opioids since I was 22. Just because my life sucks and I’ve dealt with surgery after surgery, procedure after procedure, diagnosis after diagnosis, and I’ve been intractable for 15 years doesn’t mean I chase the pain to get the medication. I haven’t. There has not been a single time that I went seeking medication I shouldn’t have. My random pee tests are clean and prior to ever being injured my work took my hair, follicles that went back a year for drug testing. And while it’s none of your business in situations like this, where the anti opioid groups are stead fast against that kind of pain relief, I’m compelled to tell my business to justify my reason for taking it and the reason the physician prescribed it.
My pill is my SCS Spinal Cord Stimulator. It has been since 2006. I use a single low dose partial agonist and partial antagonist pain medication. There is no high. I take nothing for break through. I take Zonegran 100, 2x and Cymbalta 30, 1x. Nuvigil (Sleep disorders- Central Sleep Apnea with Cheyne Stokes, + Obstructive. Mixed/Complex/Auto Servo Ventilator (ASV) and maintenance for high blood pressure, Lisinopril, Hydralazine and Lipitor. There you go, now you know it!
If you’re a physician you have to know that blood pressure can be compromised by pain levels. Well.. at least that is what I am always told by physicians unrelated to one another, my blood pressure is too high because of physical pain.
Interesting right? Maybe not.
Dr. Andrew Kolodny replied to my post on Twitter, stating, paraphrasing, not a direct quote, education and personal responsibility doesn’t make opioids more effective or deter abuse.
Really? Then why is there a CDC work group to attempt just that? I’m not going to go into specifics because you can all find it for yourself, and I’m not going to give the run down of the call because it’s public record. I was on that call. See the Federal Register.
One physician shared that she prescribed not knowing? For real? You didn’t know with your education and training that prescribing opioids were… .um opioids? (Where was your education and common sense on that one and if you weren’t educated as you claimed, why didn’t you seek it for the benefit and well being of YOU and YOUR patients) Okay, so… that was your attempt to show the call how horrible the opioid is and minimize PERSONAL RESPONSIBILITY. Backfire!
Education is crucial. Point made.
Hate me yet?
Dr. Kolodny states that personal responsibility doesn’t matter. Really Doctor? That’s a lie! Because when someone falters you, yours or someone you’re advocating for it absolutely matters.
My nature is to say I’m sorry, I’m sorry for all of you who’ve lost. Lost to addiction, and death. But I cannot be sorry that I’m fair, even, and compassionate for the suffering AND regardless of what they are suffering with or for. hm, well I don’t want to call persons weak, just unable to hold back heading for another, whether it be a chemical hook or simply choice.
Is it bad word time? For fuck sake be responsible for you and yours! If your child was a minor at the time of receiving medications that turned out to be harmful, you were responsible. You, the parent, or guardian! If the child was an adult of legal age in their jurisdiction, they are then responsible. And.. parents know better than anyone, more than a physician, more than a pharmacist, that something is up or wrong with their offspring. Minor or adult, we know, and if we claim we never did we’re not only lying to others but we’re deceiving ourselves. If you never saw the signs? Ouch, you just didn’t care to look for it. And if you couldn’t see it? Have a little compassion, how could you ever expect the doctor to see it? Because he is a doctor? Not true, we’re parents. 15-30 minutes a doctor visit at best compared to our lifetime with our kids. Minutes upon minutes, hours, days, weeks, months, years.
Hate me yet?
If my child went to the doctor, claimed pain, and I don’t even care at this point in writing this if the kid was in pain or wasn’t, but took the Rx, filled it, took the medication as prescribed, misused it,…and then decided to throw back (you know, toss some alcohol)
My child is to blame. Not the physician! We seek care from doctors, they do not seek us out. We tell them what we tell them and they base the prescription of the truth or shit we give them. We do not have to take that Rx to the pharmacy, we do not have to fill it and we certainly don’t have to put it in our body. It’s not fair to call them pushers. How can they push, when a person went to them? A pusher is someone who seeks another out to push a drug on them.
Does it even matter after all this if the medication was taken as prescribed? Nope! Because the only way to overdose is to misuse. If the doctor prescribed a medication adverse to another medication the patient is already taking I would be advocating for you and the error. Dang, I feel bad for back hands I’m going to get for this, but doesn’t anyone get it?
Maybe no mix, maybe no alcohol, great! Good job! Still the only way to overdose is to misuse unless another adverse complication was present.
I’m disgusted by a world that rather blame someone else than accept the consequences of their own actions. Oh and yes I’ve been hurt. Damaged in fact from other’s irresponsibility and I do advocate for that change but I don’t harm others on behalf of myself.
According to Dr. Kolodny, personal responsibility doesn’t matter. Does this apply then to vehicles, officers, surgeons, pilots? I think I know his answer, of course, but he’s already let them off the hook. And hey that’s okay! After all, why should anyone be responsible for anything they do. Blame it on the traffic, the felon, the patient, or the passengers.
Contrary to what it may seem, I do respect the Doctor. I’m not inclined to agree with his adamant perception of placing all people who use opioid relief as addicts, or heading for addiction. Sorry, don’t care what a few images of the brain or a poll might indicate. There’s billions of people in the world, millions on medications, and a fraction to insinuate possibility or potential from dependency to addiction.
Pain in general causes advocacy. Loss instigates the passion to make a wrong right. So while chronic pain patients are being punished, ridiculed, humiliated, stigmatized, belittled, what about your pain? Your mental pain urged the controversy against opioid managed pain care versus loss of livelihood.. Ours is physical, yours is mental and emotional.
I have a hard time understanding why any of you care what we take when you won’t be there if we overdose or commit suicide. You’re not there to tell someone striving to make it, good job, proud of you. I have a hard time being used to make your point and profits.
I have a hard time with you looking down at us, when you don’t even know us. You don’t even want to walk in our shoes to feel us. But you want us to walk in yours and feel you.
Maybe, instead of saying “people” which implies all (It is the plural form) how about some, many or most (in your opinion) otherwise you are separating us from you. You make it as if everyone is horrible, addicted, heading for addiction, stronger meds, etc. Everyone but you and yours (your groups).
Then we speak out and you become holier than thou against us whiny, complaining, lazy, drug seeking, pain complaining “people”.
Guilt is the hardest human emotion to overcome.
All we had to do was work together, all we had to do was listen to one another. We could have cared for each other. And in the long run, the children might have truly been educated to know better.
When we get a physician as Dr. Kolodny implied stating education is meaningless? I have to disagree. Education educates, I’m trying not to roll my eyes because he kinda dummied himself down on that. No disrespect intended.
You may dislike me, think I’m a b*tch, judgmental, or talking too much (not true, you’ve already judged me/us… and quite vocally I might add, news, columns, etc ) and I’ve only just begun, but…
I still love all of you and would fight for YOU if no one else did.
That’s the difference between you and I.
I wish you all well,
And enough.
~Twinkle V.
RSD Advisory- Where Chronic Pain & Depression Collide 
I for one fully understand where you are coming from as I am near 70 years old and have lived with this disease for over 40 years now. I also have been judged and harassed terribly over the years by idiots who have no clue to what we live with day to day. They just let their big mouths roll on about things they know nothing about. In my working years it hurt me in my career altho I did not miss much time unless I really had to which did happen at times. Always remember you are never alone in this struggle and probably never will be as well. We are all here with you and do understand.
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I destroyed my body working road construction in my twenties and thirties. Then nursing for 6 years. I live in constant chronic pain. I am on the Fentanyl Pain Patch 75 mcg every three days and Vicodin for breakthrough pain if I am too active or overdo something. My pain is down my entire spine. I go in once every three months for cortisone injections. They help for a while, but then the pain comes back. I was taken off Fentanyl and put on Suboxone for a couple of months but hated the way it made me feel so I went back on the patch.
To hell with those who judge us. Pain management is very important to my life. I would have committed suicide long ago if I had to deal with this pain without pain medication. And for those people who sell their medication on the street, shame on them, I hope they burn in hell. I am just thankful that I have been with the same doctor for 31 years and he knows my history.
Every time that I was off work with an injury to my knees (3 surgeries). Every time I injured my back. They were all documented. My doctor is very compassionate and has worked with me to find a level of medication that is not too much and not too little. I don’t want to get high. If I could take low dose naltrexone for the pain, I would. It is a nonopioid medication that sits on the mu receptors and makes the brain think that an opioid is there. But because I am on so much other medication for a critical life threatening illness that I had, I can’t.
So screw the medical community that thinks we are all getting high and abusing our medication and becoming addicts… I have taken myself off the patch for periods of time so that I could engage in other activities and when the pain became so unbearable, I went back on it. So I have proven to myself that I am not physiologically or psychologically addicted. I take responsibility for how I use my medication. I don’t blame my doctor. I love my doctor and would not be alive today without him and the compassionate care that he provides.
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Barrie and pvansickle59
I’m so glad that you’re both taking what you need to survive. I am too. It not a matter of how much we take, or how little, it matters that we have some QOL from it. I know the day is coming where I wont be able to sustain myself anymore. Some don’t realize or even care to understand what it takes to try to beat pain. I think they are so stuck on the negative in certain personality types that they are blinded to the ones who aren’t, have never been and never will fall into their classification. If so against this type of relief work on finding cures, better modalities, early prevention and diagnosis because some of us wouldn’t be here if we had it. Doctors can’t properly diagnose if they haven’t been educated on an illness to look for. That’s not our failure and sometimes it’s not even theirs it takes education and teaching to recognize what has been kicked under the rug. They can’t go on to learn if someone else doesn’t say hey, there’s something to learn. (disease) . I just don’t believe they went into healthcare to do us harm, even though some have. I think its more about lack of extended education than a shrug off.
We should all be teaching each other. Patients to providers and providers to patients. I’m so glad too that I’ve been with my PMD since 2004. All my files are together there, my proof and anything else to justify my treatments. I just had a block last week. Lower extremity, right side only. I’m holding at a 4, non weight bearing which is heaven. Prior I could barely keep the leg up. It didn’t get to include other areas of my body. So I’m still toughing out all of that. At least I can stand up.
I’ve busted my butt to try to be productive in society again, for my husband, children and grandson even through the inabilities and I’ll be darned if I’ll let anyone take that away from me or either of you. Because without your assistance (meds) you wouldn’t have been able to reply to me and I’m grateful your both here to be able to and share you with all of us.
With love and care,
~T
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Hate you? I FUCKING LOVE YOU!!! Thank you for having the balls to say it. Finally! I am SO SICK OF having to try to make OTHER people comfortable with MY diseases and treatments!! It must be hard to be so perfect…Having too many cocktails at happy hour and driving home to drink a bottle of wine and post pictures of yourself holding your baby in one hand and wine in the other, talking about how you’re so busy! And how it’s funny that you got a bit too “tipsy,” Talking about how you’re a Christian, and then being a hypocritical judgy gossip about me taking medicines that don’t get me high, but help me to be able to get out of bed, and maybe wash my hair once a week!
Thank you, Twinkle, for giving me the opportunity to read and comment on something without being PC! We are all so freaking afraid we’ll lose our meds if we say anything out of line, or even admit we have to take those damned meds, that we live like closeted sick people, who on top of EVERYTHING we have to handle (so much more than our oh so righteous and “busy” friends and family could ever imagine!) have to feel shamed for being sick!! It’s disgusting that this is what it’s come to. I’m tired of being nice about this. No one else worries about being nice to us! I’m sick of being judged for what I look like (I’m overwight because of the meds and the inability to exercise most of the time), for the fact that I don’t “work” (I have a full time job, it’s called running this body!) for having “garbage pail diagnoses,” a bunck of health problems that these ever-so-educated and enlightened doctors can’t figure out, so it must mean I am the one who is somehow lacking.
When they find out that I used to be thin and beautiful, that I have a Master’s Degree, that I know more about my conditons than they do, then the judging changes from “Fat, lazy, stupid, drug addict, hypochondriac, neurotic woman,” to “She let herself go, she could be thin and beautiful but she doesn’t even care enough to maintain it. She could have a well-paid career, but she just wants to do drugs and misdirect her intelligence into over-reading medical articles that she self-diagnoses from.” I thought Christians were supposed to be kind, compassionate, honest, leave judgement to God, and help others. I thought doctors were supposed to CARE about and TAKE CARE of sick peoploe. Relaity is a bitch. And she is me. And in this case, I don’t mind being a bitch when fake, nosey, slef-righteous, bullies are attacking my quality of life. I know it’s an American virtue to be a soft-spoken woman, who never complains, and puts on a pretty face…Maybe I’m not the epitome of American virtue…Maybe I don’t want to be.
Thank you for bieng REAL. Thank you for allowing me to express myself in the way I would if I were being treated like this for any other reason…in fact, if I were treated like this for any other reason, people would call me a push over, weak. I’ve never been either of those things, and I don’t intend to start now.
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Emily,
Thank you so very much for all you’ve shared. I agree with all you’ve shared. The very same people who are suppose to be on our team are the same ones who at the same time dummy us down, belittle us, treat us as addicts and people we’re not. When I know darned good and well that the professionals, even doctors and nurses, positions, businesses and those who run organizations toss them back one every night after their day is done. Go home from work, pour them a glass (or 2, or 3) of wine, or sip their whiskey on the rocks. I know that corporate establishments pour each other one “during” work. And I know what when some one breaks their leg, gets shot, or has an organ removed or repaired they’ll pop that opioid, too. And while this does not apply to every person a part of all the above mentioned it does apply to many. Soooooo,
They aren’t better than me, or you, or someone else who needs to maintain living.
So if I learn someone is taking a pain pill for what ever ailment either hurts them or disturbs them, I’ll be sure to put them on blast as addicts,potential addicts, abusers, and mis users, just as they have me.(us)
I’m absolutely aware that there is a drug abuse or RX issue, but let me say it again, … when you abuse, you choose. When you overdose, you chose to misuse. Only one thing would apply to make that statement untrue and that’s if the physician prescribed one med contraindicated for or with another. That would be an adverse effect and error on the provider’s part.
It doesn’t apply, when we have the ability to choose. When we choose and decide, we better also be ready to accept the responsibility and consequences of our ‘own” actions.
I may be submissive and subservient, but I’m no ones doormat and I’m certainly not someone else’s bitch.
I’m done being stepped on and abused and I do not care how high up someone thinks they are in any position whatsoever.
I have the right to life, liberty and happiness too.
If they think that same right belongs to them above us…
They’re mistaken.
Thank you again,
~Twinkle
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This has made my day, thank you so much. I use a combination of Cymbalta, Gaba, daily Percocet, and Lorazepam to manage CRPS pain and depression (in addition to massive behavioral impairment, specifically I am unable to sit or walk so crutches and beds are it for me). Without the opioids, I would be absolutely unable to function – and even with, the pain is still fully disabling. I am done hearing from anyone, including doctors, any sort of judgment about my medical choices. My physicians and I have discovered a regiment that keeps me alive and moderately productive, and I have spent far too much of the past two years guilting myself about drugs.
I know it’s a cliche at this point for pain patients to bring up Prince, but in a way his death has really put the struggle we face into very sharp public focus – and the outcome is not wholly negative. We suffer. Our pain matters. We have a right to seek relief, and to hell with anyone who would accuse us of exploiting our despair for a fucking high.
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Great article…….so true…
This war on “opioids” is actually a war on chronic incurable diseases. A war on chronic pain disease patients who benefit from opioid medications. Medications that enable millions of Americans relief of chronic debilitating pain associated with these diseases.
100 million Americans have one or more chronic incurable pain Disease. As the CDC, DEA, FDA, Medicaid and Medicare, and numerous other government agencies, are blaming Doctors for the over prescribing of opioid medication. NOBODY, is looking at or reading the statistics from chronic pain disease patients. How about NOT addressing these drugs as dangerous and addictive. When all else fails: physical therapy, exercise, over the counter medications and numerous injections etc, we chronic pain disease patients, are left with one option to help us cope, opioid pain medication. Lets address this medication as lifesaving and medically necessary for the million of Americans with chronic diseases. Chronic pain is a disease. Chronic pain disease patients are now the epidemic. The addiction rate of chronic pain disease patients is .02-.6 %. We do not misuse or abuse our medications.
No other disease medication is scrutinized. We, as patients, are being denied, dismissed, overlooked and discriminated against, by our physicians, due to all the scrutiny associated with treating chronic pain disease with opioid medications. Our Dr’s are afraid to treat us humanely and adequately. We have a disease that medication is readily accessible and beneficial to us and we are being denied. We, pain patients, are being discriminated against, due to people who abuse illegal heroin and illegal fentanyl. This is a direct hunt for Doctors who prescribe life saving medication, for pain disease patients, that benefit from them. We have our privacy invaded, we no longer are able to have doctor/patient confidentiality. We now have insurance agencies, pharmacists, and other government agencies in our physicians offices. Monitoring and policing our physicians.
Though the statistics show a reduction in, opioid medications distributed, due to the CDC guidelines, but death rates of overdoses from illegal opioids is rising.
The specific causes of deaths also needs to be closely investigated. The opioid in the person’s system needs to be specified. Was it an illegal opioid, was it opioid medication specifically for that person, was there other drugs or alcohol involved? These Government agencies do not want that information out, due to the fact that this “opioid epidemic”, would then be debunked.
We have a chronic disease. We want to be able to take care of our homes, our children, our selves, as much as possible, but without access to these life saving medications, we are unable to do so. We want to live, not just exist in pain 24/7.
We need the government agencies to look at the real statistics, not the hand picked. These agencies are not physicians. They are trying to doctor us, patients, without a medical license. They are also trying to police our physicians. This is a war on a disease, medications, physicians and patients.
The statistics do not differentiate what opioid drug attribute to a fatal overdose or misuse of medication. Was is an illegal drug, heroin, illegal fentanyl, carfentynal, was that person’s legitimate medication? All these questions need answers. The information needs to be addressed.
We chronic pain disease patients need help. All the headlines, topics and stories on how opioids are bad and how people are abusing, misusing, overdosing, becoming addicted or dying from them. We need to look at the good they do and how they help our disease of chronic pain and the million of Americans who use them for some relief.
The government needs to put the focus on illegal drugs coming into, being manufactured and distributed in this country, illegal fentanyl, illegal heroin, methamphetamine, cocaine and all other ILLEGAL DRUGS. Not the legally prescribed and medically necessary medications we patients need. We chronic pain disease patients need help, but we are helpless due to the government and government agencies. There is stigma, scrutiny and discrimination against us due to a category of medications we desperately need and benefit from, opioid medications.
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Candi,
Thank you!
Yes Ma’am you are so very right. Thank you for sharing from your own belief, perspective, knowledge and education. Opioids taken responsibly, as prescribed have afforded people a quality of life even if the QOL isn’t enough to be more or do more it’s kept people alive. I have a hard time understanding how we can be lumped so severely into a category of being abusers, mis users or addicts when none of these have ever applied to so many, yet we are labeled and the stigma is that if we have chronic pain we must be seekers, and whiners.
I took a low dose opioid for many years and later a low dose partial agonist and partial antagonist medication which helped me and while I had still dealt with flares more often that not it was enough to keep me off the edge until I lost all pain related medication management and fell off as a result.
Few want to hear that side of the story. Instead I could only be crazy now.
The fact is that no human psyche is equipped to handle extreme pain without intervention. It can’t hold on under intense pain or circumstances.
I appreciate you.
~Twinkle
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