This is not dissimilar to stories I have heard and things I have personally experienced from age eight into adulthood.
This story is adapted from The Song of Our Scars: The Untold Story of Pain, by Haider Warraich.
This is not dissimilar to stories I have heard and things I have personally experienced from age eight into adulthood.
This story is adapted from The Song of Our Scars: The Untold Story of Pain, by Haider Warraich.
I’m determined to be prepared for my doctor’s phone call in the morning. I know he’ll call and try to get ahead of me and what I’m feeling/thinking, but I am still very much in a state of shock and betrayal. I’ve considered cancelling my appointments with him for the rest of the year; but that likely won’t be helpful on too many levels.
I do feel composed enough to set him straight, but I’m going to respond to tone and behavior. I should not have to preface everything I say with, “Please leave this out of my medical record.” I’ve seen what other doctors have written in my chart. There’s so much incorrect information, their personal perceptions of me, and even when quoting me, they get it wrong. A lot. Whenever I’ve confronted other doctors, they have vehemently denied what is right there in a file they signed off on. One denied saying something to my pharmacist and turned his back on me when I confronted him. Legitimately turned his back to me, pretended to fiddle with the computer, and would not look me in the eye. Since she was defending me, as a patient, three guesses who I believe. Patients should NOT have to feel like this.
I was voted, “A Strong Voice for the Mental Health Community” a few years ago, and I take this seriously. At the core of who I am, having others respect my voice is truly important to me. If I advocate for other people taking charge and fighting the system, then why should I do any less for myself?
I would love to come back in a few days and say, “Okay guys, I got angry and reacted, but everything is good now.” I’d like to be 100% wrong or partially wrong, except I know I am right in feeling as I do. I know I am right to say, “Re-read your notes and please remove every personal detail you have entered. The personal stuff is for you to remember, NOT for outsiders to peruse, twist to their own benefit, or for me to see and get pissed off at you, because some of this is disrespectful as fuck.” I highly doubt he’d appreciate me going over his head, either, but I’m more than happy to get on a first name basis with the hospital adminstrator. I fucking LIVE for setting these kinds of people straight (According to my brother, who says I should have been a lawyer because I “love to argue”. I don’t, but I will always fight when I am right.), especially since I tend to leave all of them dumbfounded.
Another doctor of mine happened to confess their hate for this person (the hospital admin), and despised that the first thing they did upon taking the job, was choose their own salary. They mentioned how this strips many departments of much-needed funding, and since this is not a gossipy type of person, I take them at face value. Moreover, I know this is how things operate. At the end of the day, hospitals are a business, and in this country, they don’t care if they bankrupt you once a medical bill is in play.
No one needs another overpaid, glorified paper pusher banking on the pain of every single person who enters the main hospital buildings, all affiliated hospitals, practices, medical buildings, etc., which accounts for nearly half the damn state of Massachusetts. I could go on, but I’m tired.
The gloves are OFF. You guys can start a Go Fund Me in case I need to be bailed out. 😉 I’ll keep you posted.
copyright © 2021 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.
Today, I received multiple messages from my treating hospital with information I had never sought out because it was off-limits. However, they are now one of the first hospitals in the country to allow patients to view all of our medical records, respond to comments made by anyone who has treated us, and request corrections to the records themselves. This would not be a big deal, under normal circumstances. I’ve already had that level of access and would have to continually roll my eyes, be frustrated with the lies in the file, and ignore the ignorance and stupidity I was dealing with. Until today, when my psychiatric notes were revealed. I read one note from this week, scanned over it three times, and had to calm myself down because I contemplated breaking my doctor’s hands. Pissed is NOT what I felt at all. Worse, he is one of the people who knows me better than others, so I had a hard time swallowing the bullshit.
It took me leaving, and subsequently deleting, nearly ten messages before I was able to calm down enough to say, “I’m not sure if you have been made aware of the fact that I can now see your psych notes. We need to discuss this because I now feel I will have to edit 90% of what I say to you, and that is NOT how we’ve worked to establish trust as doctor and patient, not once from the first day I sat in your office. I’ve always trusted you, and you have always assured me your notes were clinical; yet THESE NOTES WERE PERSONAL. Without correction, they will follow me for the rest of my life. This needs to be addressed. You know precisely what I have been through with doctors writing their perceptions of me, as opposed to the facts I am spelling out, so we don’t need to talk about it next week, but it must be addressed at my next appointment.” I felt like I left the most honest, professional message I could, under the circumstances, and I changed my tone of voice so that he understood how this made me feel and how it would effect me moving forward.
For example, if I say, “I’m a mess.”, I don’t expect to see my doctor put that into clinical notes as the header of our discussion. Really?! Under typical conditions, I can only see we have discussed depression, trauma, PTSD, anxiety, suicidal ideation, etc. I’m using those topics as an example, not as facts. But to read my words twisted slightly to make me seem like a much different person. it retraumatized me from my previous medical trauma, and immediately made me want to say to him, “Are you OUT OF YOUR FUCKING MIND?! How stupid can you be?“
Here’s what many people don’t understand about psychiatric notes; they can be subpoenaed in ANY court case. They can be used against you. One improperly written note can be twisted legally into something it isn’t. This has happened to me before; TWICE. He knows this. He knows it has deeply affected my life to terrible degrees, which is why I reacted as I did. I will, one hundred percent, be going through every damn note he writes from now on, and requesting our private discussions be removed from the medical record. They don’t belong there, especially since he processed this as “psychotherapy notes and ten minutes discussing medication”. We actually discussed medication for under five minutes total, with him saying he’d give it some thought and call me in a few days. I missed his call, and he’s damn lucky I did, because I’m not sure I’d be able to have controlled the tone of my voice or the aggression in what I was saying.
I used to wonder how he kept all of his patients lives straight, because his recollections are as precise as my own, until one day, I saw a notebook on his desk at the start of my session, and it’s one of a few he has on me. It’s a nice, leather bound notebook. The kind I’d journal in, and it is filled with his private notes on me. Lord only knows what’s in there! Yet, the actual medical record had way too much private info on me for him to claim he, “keeps it strictly clinical”. I am going to force corrections from 2017 right up until this past week. If he thinks I won’t go over it all with a fine tooth comb, then he’s forgotten the woman who first walked into his office, and declared herself, “A pretty mess.” I have been assured I looked like I was going on a date, but that nothing about what I’ve been through or said could ever be covered up with concealer and properly blended eyeshadow. At my second appointment, I tore him a new asshole for referring to my pulled together appearance as, “a mask” (after he ended the appointment by saying he was leaving in five weeks.), and he admitted I was right and he was wrong. He earned my respect by being a down-to-earth human-being who saw me as a human-being, and didn’t treat me like another annoying mental health patient who doesn’t respond well to medication. But this? This is a deal breaker. It violates everything I hold dear, and now I feel like my entire medical record needs to be turned over to me for review. If I seem like I’m calm, trust me, I’ve got fangs and I’m not afraid to claw those records apart. And I will absolutely hire a lawyer to get the personal information, which is not necessary for such records, completely omitted. He does not want to test me on this.
When my appointments were cancelled due to quarantine last March, it took me three months to get on board with Telehealth. Initially, I felt like other people needed the appointments more than I did. I had weekly appointments for months before I was forced to go down to twice a month. Before agreeing to these appointments, I kept asking myself, “Am I just a pain in the ass patient, am I a challenge for this doctor, will I ever feel better, or am I going to have to look for someone else?” I strongly considered a new psychiatrist because I was confused about how laid back and comfortable our communication is. It has always felt comfortable, human, and safe. It doesn’t feel that way now. In fact, I feel betrayed beyond words, and I wonder how much will require correction.
In this particular moment, I probably need to hear him out first, and then decide if I still want to break his hands. Of all the people I have met as psychiatrists and therapists throughout my mental health care journey, he is the first I have trusted the most. He’s also the first who isn’t completely afraid of me, but probably should be right now.
He won’t hear my message until Monday, and that’s fine. It gives me a few days to cook, read, maybe get in some yoga, do some psychic work, and remind myself that even though he’s taller than I am, I can still knock him out, and by that, I have to say that my message should be enough to make him see reason. As honest as I’ve been here, I will be ten times more honest with him because he needs to know what those notes did and can do.
Anytime there has been an issue between us, he has been good about hearing me out and fixing the problem. On that level, I should consider this before getting upset, but I couldn’t help reading through it and thinking, “Is this how you perceive me?” Because if it is, then there’s a bigger problem underneath it all and that won’t fly with me one bit.
In my message, I made it abundantly clear I might be undermining and/or underestimating my coping mechanisms going into the month of May (If you know, you know. If you don’t, you’ll see what I write next month or you can go through the previous years’ of work. It’s a rough time for me. Period.). I had said, “I don’t think I’ll make it through the month unmedicated.”, and he wants to revisit this discussion because he’s concerned about side effects, even though I suggested a medication I am extremely familiar with. I said this mostly because he will be away next month, during the worst of what I’ll be dealing with and that’s never a good feeling when I have to relive one of the worst months of my life, despite the fact that I have his permission to have him paged no matter what, and also have his personal cell phone number in case of emergencies.
The level of my trauma is a terrible loop and if I block things out, they can (and will) come up out of nowhere and throw me down a metaphorical flight of stairs. It cycles the trauma over and over again, and as he and I discussed this week, “We can’t medicate trauma.” Maybe one day, in the future, this will be possible, but for now, it isn’t. Not being about to help trauma victims and survivors is something the mental health community fails at deeply; in my personal experience.
I wanted him to know I wasn’t demanding the medication, and that I will defer to his guidance, but he also knows I agree to disagree with him a lot. And I do so respectfully. I might be upset, but that’s because this is a relationship I highly value. I’ve felt blessed that someone cared enough to have my back, and today, I felt stabbed in it by the one person who should know better because this is someone who, long before Covid, is the person I spent the most time talking to about the heaviest shit in my life. I will wait to see how this is handled on Monday, and next month when we speak at length. But I’m not going to lie; I am now contemplating dialing my appointments back to once a month and not being anywhere near as forthcoming as usual. As a direct result, I will be searching for a full-time therapist because clearly, if personal things are going to end up in the record, then he is not following proper procedure under the psychotherapy terms and conditions, where every note truly IS clinical and boring as hell.
***On the plus side, the notes state I’m ten years younger than I am, so that’s something he can keep on record. 😉 I’m maintaining the whole reverse aging thing. The fact that a specialist told me this week, “You’re young. You don’t need ANY cosmetic enhancements. There’s not a single wrinkle or mark on your face, and this has not changed since the day I met you.” These are the small things that make me smile while I am going through internal and mental HELL. Last weekend, I stopped into a liquor store to pick up wine and a few other items (I am craving Pina Coladas like nobody’s business! It’s odd. I’m not much of a drinker. I feel like quarantine turned me into a maniac I don’t always recognize.). The second I asked for two small bottles of Jack Daniels (for a recipe I love, but one that is very time consuming and doesn’t require more than a few ounces of JD. I think it calls for a few tablespoons, but I usually eyeball it.), was the moment when, not even realizing I’m behind a mask and sunglasses, the cashier asked to see identification. I could have been anyone. She couldn’t tell my height, eye color, NOTHING. Legally, they have to ask and I always offer, but it amused me. Like I said, these are the small things that make me smile.***
I hope everyone looks into their own medical records for this very reason. Don’t hesitate. Once I calm down, I’ll be tearing through mine like a starving vampire. It’s a good thing I’ve already fired most of the doctors who are in my chart, because they can’t fight me when I ask for something to be removed. It is my legal right. I’d hate to have to do the same with this doctor, so here’s hoping everything gets straightened out. I’d like to think that maybe this situation was a slip on his part, but I won’t ever make excuses for him, and he knows that.
It would be a shame for him to be on vacation with no hands. 😉 I have zero shame in being mean. After all, this involves my life. I should be fully involved in what is written about me, and so should you.
copyright © 2021 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.
Everyone I spoke to this week, save two or three people, brought up today’s election. I am trying to be positive, yet realistic. I am not telling anyone who to vote for because I don’t feel it’s my place. We all have different things that are important to us when we vote. I have a list of things I have to weigh in order for someone to get my vote; it’s important to me that I elect officials who’ve earned the spot.
I am an incredibly free thinker. My father used to refer to me as, “My daughter, the liberal.” The truth is, I see things differently than he did and I see things differently than a lot of people do. Also, I am not one for strict party loyalty. That’s not how I envision the future of this country. It would be hard not to see the obvious division.
I’m a registered Independent and have voted this and that way from day one. I remember my voting record from my first election until now. I have always tried to make a fair decision, even in primary elections.
I come from a family of predominantly staunch Democrats (My Mom’s side and my Dad’s. I don’t know the history behind why this became a generational thing.). Often, I avoid political discussions with them simply because they stress me out to the Nth degree. If they suspect you think differently from them, it can become a fight. Never argue with the lawyers in your family; they are determined to argue until they turn one color or another.
My cousin, Amy, represents the 88th Assembly District in the state of New York. https://nyassembly.gov/mem/Amy-Paulin I mention this because I feel the need to be transparent about it. I disagree with some of the things she supports, like gun control, but not everything. She’s clearly done great work for the past nineteen years. Her reputation speaks for itself. Don’t worry; she wouldn’t know me if she walked past me on a street corner anywhere, but my mother and Aunt grew up with her and her siblings. I try to be courteous and respectful about this. Trust me, she hasn’t seen me since I was under the age of six. But, I digress…
For me, as I edge closer to politics to help get certain things changed in various communities, I find myself having to hold representatives accountable. Many people have pointed out that I am the right person for that particular job. Having a strong voice is one thing; knowing how to use it properly is another thing entirely.
I’ve voted in almost every state I’ve lived in, but this morning, I tracked my ballot as it pertains to the Commonwealth of Massachusetts and the General Election. 😒 It was accepted last week and is ready to be counted.
After a lot of deliberation, I made a decision I can live with, one I know won’t harm my family or friends. It was not a, “red versus blue” scenario for me. I weighed so many things in my head. Mental health care was first, so that no one in this country slips through the cracks. I know how hard my own battle has been to find the right doctor (and I always make it clear that I am grateful to have insurance. My insurance has been a G-d send.), and to still be searching for a therapist after over a year of searching when my previous one proved to be way too flaky, and that’s putting it mildly. My doctor validated that I have done the hard work of introspection and healing on my own, without a therapist. He feels I’ve done a great job solo, but the truth is, I shouldn’t have to do it without an ounce of support, though he has been amazing.
Women’s rights are important all across the board, and especially women’s health care on every level. I am always going to be pro-choice. I don’t feel insurance companies should be allowed to dictate our care to us, nor should they drop patients with cancer or any high-cost treatment needs. I have never seen a man dropped from his insurance anywhere near as quickly as I’ve seen women constantly being cut off from crucial healthcare over the past ten years. Many women are losing their OB/GYN simply because they are on medication the doctor they’ve seen for 20+ years is not comfortable with them taking, so they are being let go as a patient with a letter of dismissal. The reasoning isn’t even valid, but I’ve seen the exact same form letter sent to hundreds of people all over the country, and I’m sure many more have not shared them with their pain groups or specific advocacy groups. Not a single phrase is different from one letter to the next. Don’t even ask me how pain patients are being treated because it’s getting worse every single day. My own doctor is playing games with my pain and the lack of treatment he is providing. I am angry as hell over how much money I have spent on CBD products in the past five months. Let me be clear; I know it is a privilege to be able to do it at all. I know it is a privilege to do anything to attempt to reduce my pain levels, despite the fact that my insurance fully covers medication I would much prefer to take. I don’t take that knowedge lightly at all.
Countries we give aid to was on the list, as well, because I take issue with how we help everyone (including a long list we should not be giving a penny to), but will allow our own people, many mentally ill individuals, even our own veterans to become homeless and/or to remain ill with no assistance at all. Not everyone who is homeless is an, “uneducated bum”. Let’s be clear about that because too many people say it without realizing how quickly it could happen to them. There are people on the streets with doctorates and truly brilliant, gifted minds. They were allowed to fall through the cracks of a broken system. That is not okay with me.
I thought a great deal about our entire healthcare system. I talked with two of my doctors, and friends who are doctors in this country (and in other countries). I have a few doctors in my family, too. They’re all quite furious with how Covid has been handled here. They’re still fighting for PPE all these months later. Many people were forced to purchase all of their own PPE materials, and they cannot afford to keep doing so.
I thought about all of the small businesses that were wiped out due to Covid. I see more empty buildings than full ones, even in bustling places like Boston, right near Fenway Park. I only know a handful of people who were able to keep things going, professionally downsize to one brick and mortar location instead of 2+, and many who created businesses during the start of quarantine which allows them to create amazing things from home.
I thought about all of the bigger businesses I never could have imagined closing their doors, including hundreds of restaurants which have been around for longer than you or me. I keep finding myself startled by the boarded up businesses that are no longer. It jolts me to my core because I don’t know how we get back to helping the working class, the middle class are the heart and soul of this country, and they have been epically failed. We MUST support our people with financial assistance until there’s a solid vaccine in place that is accessible to all, and we cannot allow them to be called, “lazy”, because there are far less jobs available now than there were this time a year ago. They must receive support until they are able to return to a job safely, and for millions, they will be starting over. No one who is able-bodied and healthy is sitting around not looking for work right now. People have bills to pay and families they provide for. Even if you’re single, you still need to be able to cover your expenses and food.
We must expand legitimate affordable housing and make homes more affordable to purchase. I have watched a lot of new construction go up this year and the prices are beyond ludicrous. Realistically speaking, most people cannot afford $5000 a month for an apartment, and even if they can, it’s beyond wasteful unless it is short-term. Many people can’t afford half that amount, even with roommates to help cover expenses. If you’re paying $2000 a month on rent, minus utilities, you just tossed away $24,000 in a year, and you don’t get any of that back on your income tax return. As a home owner, you are able to deduct a portion of your home each year, more so if you are working from home. Some people don’t make $24,000 a year, so when I say “affordable housing”, I am not saying let people live in disgusting conditions. No way. They should have just as much access to all the, “luxury apartments” that go up daily all across this country. The ultra rich should not be dictating real estate prices to the middle class, or to those who live below the poverty line. Everyone deserves a safe roof over their heads that cannot be taken away from them.
I grew up middle class, in one of the greatest cities in the world. I had no clue my father actually made a very good, often six figure, living and didn’t always make the best decisions with money. One decision he made cost his family a house that would be worth millions or tens of millions now. I try to make the most responsible decisions possible so that I don’t have to look back on regrets that large.
All too many people on the front lines have lost their lives to Covid, predominantly healthcare and food workers, simply by going to work and trying to help others. That is not something I can abide by, either.
I am thinking a great deal about the violence in this country, especially coming from police officers. A man was shot in Massachusetts today, all because one officer pulled his weapon while others tried to contain the situation with a taser, which failed to work somehow. They killed someone who was mentally ill. I am beyond outraged by how many mentally ill people are being murdered in cold blood by officers with itchy trigger fingers. I am equally outraged by police murdering people and judging them based on nothing more than the color of their skin. Racism in this country is at an all-time high, as are anti-Semitic attacks (New York City, take a long hard look at your mayor, governor, and some of your elected “officials”.), and attacks on places of worship from homegrown terrorists. I am all for peaceful protests, but not supportive of destruction of property or burning anything down. Unfortunately, many people don’t feel they have any other choice. 😦 This needs to be addressed, over time. There’s no quick fix for any of it.
Have you been shopping online more now than ever before? I absolutely have. In the ten years I’ve been an Amazon shopper (I might be off by a few years), I have never relied so heavily on any kind of service as I have with Prime this year. I probably see a dozen, or more, Amazon trucks each day. This doesn’t include all of the people delivering groceries in their personal vehicles. Oftentimes a vehicle is down the street and I am the tenth stop. They might be dropping off something minor, like when I had to replace a belt and saw that I was also low on socks, or they might be delivering roughly 80% of my grocery list for 2-3 weeks. Please, if you are using grocery delivery in any capacity, make sure your driver receives a tip. If you want to pay them in cash, put it into an envelope and let the driver know in your delivery instructions where it will be. Show them your appreciation because it is a true privilege to have your groceries brought to you. People in other highly developed countries have not mentioned this to me at all. The drivers may be going to tons of homes, but they’re working harder than you might realize. Be appreciative. Many of them are working for Amazon to make sure they aren’t stuck at home looking for a job right now that may not be available for another year or two. Many of the people who’ve delivered for me were genuinely shocked when I came out with a mask to make sure they got a tip (Sometimes, the credit card system doesn’t allow me to add it in and, obviously, it leaves me frustrated. I don’t want anyone to feel unappreciated.). One woman nearly cried, and I want to stress the importance of being courteous to those who are doing a service for you.
Please stay safe if you’re headed to the polls today. I’ve had people report long and short lines, among other things. I am concerned about people’s safety and the so-called, “poll watchers”. I’ve never rolled my eyes harder, or maybe I have. It will be hard to escape the news in the coming days, weeks, and possibly months. Please place your safety, and that of your loved ones, above all else. Cast your ballot and breathe calmly in the safety of your own home.
Side note: November is #NationalVeteransMilitaryFamiliesMonth. I’m repping #Green💚 for #MentalHealthAwareness and for our #Veterans.
I wore this shirt yesterday (The design has been discontinued, but you can find others HERE by looking for Mental Health Awareness. I highly recommend this t-shirt company. Their products are high quality and the shirts are really soft.) and my first manicure in eight months is Essie in Heart of the Jungle (lighter shade) and Sweater Weather on the ring fingers. Top coat is Nail-Aid Gel Xtreme Shine. Hand care is AHAVA (15% off right now) and Gloves In A Bottle. I will change up the color before Thanksgiving, but clearly, I’m showing my support. I practice what I preach, even if I do it a little more colorfully than others might.
My local Congressman is up for reelection. It’s my second time voting for him. He’s a Marine veteran, and a Scorpio. He’s a crucial component to the future of this nation. As a registered Independent, I proudly back him. No, he didn’t pay me for my endorsement as a #Writer.
G-d help us all. Again, stay safe. 🙏
copyright 2020 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.
Patient Abandonment & Forced Opioid Tapers
This is part of a letter sent to a hospital after patients were informed that their opioid scripts would be suddenly discontinued following a doctor’s retirement. The hospital agreed to contact the primary-care physicians of every affected patient to ensure continuity of care. Feel free to use this letter and/or this research if you’re in a similar fight. I’d be interested in your struggle–and your success–on this important fight for fairness for people in pain. I’m on Twitter (links below).
–Jill Piggott, PhD
First sentence depends on the situation:
I understand your hospital [or practice] allows doctors to refuse to treat patients who rely on opioids to manage disabling pain. This forces patients to discontinue an effective medication and puts them at risk of significant harm.
I understand your hospital [or practice] allows doctors to taper patients off opioids without their express consent.
If you’re the patient, write an opening that makes this clear. For instance:
For nearly a decade, Dilaudid has allowed me to manage disabling, daily migraine. Without it, I’m basically bedbound and can’t reliably get to the hospital or doctors’ offices for care. I’ve just learned that the neurologists you hired to cover Dr. —’s practice refuse to continue opioid prescriptions for his patients. I’m not well enough to travel long distances to find a specialist willing to weigh the benefit of opioid treatment for people with chronic, intractable pain like me. As a result, in less than 4 weeks, I’ll be forced off the only effective pain relief I’ve found.
I’m sure you’re aware that it’s not safe for patients to abruptly stop taking opioids and that you’d be violating the CDC opioid prescribing guidelines if you forced patients off opioids without their consent (see “CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain” linked below).
The CDC’s recent reaffirmation that it never intended for patients to be abandoned or forced off opioids came in response to a letter from Health Professionals for People in Pain which reads in part: “Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions. … Consequently, patients have endured not only unnecessary suffering, but some have turned to suicide or illicit substance use. Others have experienced preventable hospitalizations or medical deterioration” (see link below).
Disease progression can occur in illnesses that cause chronic pain if the patient’s symptoms are untreated. Consequently, even relatively short-term gaps in treatment can lead to long-term and even permanent disability. The hospital needs to recognize the legal jeopardy it’s in if you abandon patients and refuse them appropriate, effective care. Medical providers can be held liable for patient abandonment if care is terminated without reasonable notice or reasonable excuse and if the provider fails to provide the patient with a reasonable opportunity to find qualified replacement care. Providers should give patients written notification of termination and continue to offer care for a reasonable period.
The Food and Drug Administration has identified harms caused by the sudden discontinuation of opioids or by rapid decreases in dose, including “withdrawal symptoms, uncontrolled pain, psychological distress, and suicide.” In new labelling, the FDA explicitly states that “Health care professionals should not abruptly discontinue opioids in a patient who is physically dependent” (see link below).
The FDA advises physicians to obtain patient consent before discontinuing or tapering the dose of opioid analgesics and instructs them to “consider a variety of factors, including the dose of the drug, the duration of treatment, the type of pain being treated, and the physical and psychological attributes of the patient.” Physicians should “create a patient-specific plan to gradually taper the dose of the opioid and ensure ongoing monitoring and support, as needed, to avoid serious withdrawal symptoms, worsening of the patient’s pain, or psychological distress.”
There are “no standard opioid tapering schedules that are suitable for all patients,” but the shortest acceptable taper is in increments of “no more than 10 percent to 25 percent every 2 to 4 weeks.” However, “if the patient is experiencing increased pain or serious withdrawal symptoms, it may be necessary to pause the taper for a period of time, raise the opioid analgesic to the previous dose, and then once stable, proceed with a more gradual taper.” Finally, the FDA expects physicians to “ensure that a multimodal approach to pain management, including mental health support (if needed), is in place prior to initiating an opioid analgesic taper.”
Perhaps most alarming is the FDA’s assessment that the withdrawal symptoms associated with an abrupt discontinuation or too-rapid taper “can lead patients to seek other sources of opioid pain medicines, which may be confused with drug-seeking for abuse. Patients may attempt to treat their pain or withdrawal symptoms with illicit opioids, such as heroin, and other substances.”
Your hospital fails to follow current FDA guidance on prescription opioids whenever patients are forced to taper without their consent, when they are denied the ability to control the timing of a taper, or when they are abandoned for discontinuing a taper. Who is responsible for continuity of care and for ensuring the hospital follows FDA policy on opioid prescribing? I’d like to be in touch with that person directly.
I appreciate your attention.
“CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain.” US Centers for Disease Control. 24 April 2019.
“Health Professionals Call on the CDC to Address Misapplication of its Guideline on Opioids for Chronic Pain through Public Clarification and Impact Evaluation.” Health Professionals for People in Pain. 6 March 2019.
“FDA identifies harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering.” US Food and Drug Administration. 9 April 2019.
“Access to Primary Care Clinics for Patients With Chronic Pain Receiving Opioids.” PA Lagisetty, et al. JAMA Network Open. 12 June 2019.
CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic
Pain | CDC Online Newsroom | CDC
CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain | CDC Online Newsroom | CDC
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Today, I went to an essential appointment with my headache specialist. Not surprisingly, she acted like nothing ever happened via phone between us.
This month is my two year mark as one of her patients, and aside from a few appointments where she actually knew my name, and my medical reasons for seeing her, this time she changed my name entirely. Say hello to Mary, everyone. 😂 I’ve been called worse, really. 🙄
The waiting room was predominantly empty, and no one can hear you speak clearly with a mask on, so I said, “I know you mean me, but that’s not my name.” I had to repeat myself three times. When she went into the system to double check, she wondered out loud, “How the hell did I come up with Mary?” Good question, but I was there for medical treatment, it was not a social call. She put a note in my chart to remember my name for when I go back in early August. 😒
I mostly said yes to her incessant questions. With strict Covid-19 precautions in place, “Yes.” seemed like a great answer to help speed up the 20-30 minute procedure. I was polite, I listened, but I was also astounded that she asked how my migraines have been these past few months, especially since we JUST had that conversation where I was basically begging for alternatives for when a treatment method fails and I’m left suffering. This plea was treated with disrespect and disdain. That sorry excuse for a conversation was not acceptable, but I learned from day one to discuss those matters during follow-up appointments only. Otherwise, she becomes mentally distracted. You do NOT want a doctor distracted when the treatment process requires one hundred and ten percent of someone’s concentration.
I already had a migraine going in to this appointment, so I immediately went to the only place open that serves coffee (I miss you, Starbucks. That’s sad, given the full weight of what’s going on in this world. But hey, I’m human. I love their Iced Green Tea Lemonade and their Passion Tango Lemonade Iced Tea. The former is caffeinated a bit, the latter is herbal. I have gift cards saved to their app. I wouldn’t normally go there, otherwise, but I digress.) for Cold Brew. I was craving it for four days straight. They were out of both versions, so I ordered iced coffee with a shot of vanilla instead. I then proceeded to try making it as light as possible, while adding the correct amount of sugar so it would be lightly sweet. Ordering coffee after noon on most days isn’t a good idea to begin with. I haven’t had coffee in almost a full two years. I gave it up cold turkey because my medication, at the time, required it. No problem. I can give up high dose caffeine. I know most people can’t, but it wasn’t a hardship. I was still drinking iced green tea on occasion once I got the hang of the medication, and when I was unable to find the decaffeinated version, I would still drink full strength Earl Grey on cold mornings (I use a huge mug and two tea bags. I take my tea pretty seriously.). Otherwise, I was drinking my usual water and iced herbal tea. Repetitive boredom, but we do what’s good for us. Or at least, I try my best to do so.
Turns out, I’m still finding coffee incredibly disgusting. Three sips and I was so nauseous, I contemplated whether or not I needed to take Promethazine. I wanted the caffeine to help my migraine, but right now, only ice cold Coke Zero or Pepsi does the trick. When either one tastes REALLY good to me, the caffeine will help considerably. Under normal circumstances, I don’t touch the stuff.
The artificial sweetener most widely used is a neurotoxin. It hasn’t been researched enough regarding the long-term effects on the human body. However, many people are often misdiagnosed with severe neurological or pain disorders when what they REALLY have is Aspartame poisoning. Too often, you aren’t asked about your diet or what you drink, other than alcohol, so I can only wonder how many people are drinking this stuff daily, in one form or another, and making their health worse. I’m pretty good about eliminating things and not looking back.
I cut all of these things out when I was first diagnosed with migraines. There’s a long list that you have to eliminate to see if they are triggers. You can slowly bring things back into your diet, providing they don’t make you sick. I have researched the fact that this sweetener causes insane amounts of inflammation in the body. Even twenty ounces can set you back if your body was trying to heal itself. Unfortunately, the sugar in the regular versions is way too much. I’m a purist; I will use real butter, heavy cream, real sugar, etc., when making specific things for myself, family, and friends. While my taste buds can easily tell good from bad, sometimes you’ll do anything for relief. That’s how bad my migraines have been.
Upon returning from my appointment, my head pain was moving into my neck and I was MISERABLE. I am used to this, sadly. I know it takes a few days or two weeks to start feeling better. Hopefully I can get there quickly because the pain turned into a full-blown flare up, and I can barely think straight. Sleep would be great, but isn’t likely to happen at the moment. 😔
I’ll be recovering from this treatment, but I’ll still be around to share bits and bobs. 😉
© 2020 by Lisa Marino and Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
If your insurance pays for you to see the doctor, and it’s a serious issue, DEMAND your appointment be with the doctor. Mine is booked six months in advance and I’m an established patient, so I’ve decided the best thing to do is find a new doctor who doesn’t tell her nurse she’s too busy to deal with me and I can see anyone else. Mind you, she said it in Spanish and the nurse tried to make it sound nicer. It wasn’t nice.