Patient Abandonment & Forced Opioid Tapers

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
Director, headsUPmigraine

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.

Sources

“CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain.” US Centers for Disease Control. 24 April 2019.

http://www.cdc.gov/media/releases/2019/s0424-advises-misapplication-guideline-prescribing-opioids.html

“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.
healthprofessionalsforpatientsinpain.org/the-letter-1

“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.

https://www.google.com/url…

“Access to Primary Care Clinics for Patients With Chronic Pain Receiving Opioids.” PA Lagisetty, et al. JAMA Network Open. 12 June 2019.
https://www.google.com/url…

CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic

Pain | CDC Online Newsroom | CDC
CDC.GOV
CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain | CDC Online Newsroom | CDC
CDC public health news, press releases, government public health news, medical and disease news, story ideas, photos.

https://www.cdc.gov/media/releases/2019/s0424-advises-misapplication-guideline-prescribing-opioids.html?

Sixth Anniversary

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Today is my sixth anniversary on WordPress. I can’t believe how far I’ve come since sitting down on a particularly benign day, and saying “Why not?” It was a harmless move and thought, and I can say I am BLESSED to have remained friends with several people who first started following me on my original blog. It remains up, but hasn’t been active in a few years because I’ve been here, working, writing, sharing, thinking, and making new friends and better memories.

This is one of my major priorities; writing and sharing things I feel are important to share with all of you. 2018 was an enormous challenge for me, but I am looking ahead and trying to manifest more positivity than ever before. I’m the same person, but I’m growing and I want to be able to share that growth.

I have multiple novels in progress. I am going to be finalizing the final draft for a romance novel soon. I am going to revisit the Dark Urban Fantasy series (eight books, laid out) and see if I can complete the first two in the series. It’s better to be over-prepared as a writer, as opposed to under-prepared, and forced into a 6-8 months completion deadline when you’ve only got 10-15% of book two laid out. Book one is the foundation and every time I read the manuscript, I feel like I’m sitting in a bookstore, immersed in someone else’s characters. When I reach the end and my name is there, it still shocks me. Maybe 2019 will bring me more literature surprises I never imagined possible.

Last Friday, Global Healthy Living Foundation and Fifty State Network called me to do Media Outreach. I returned the call and missed the call back, so I ended up e-mailing my contact there. Let me first say that this position is as a patient advocate. This is still a relatively new field, so not everyone who advocates has gone to law school or has a degree in nursing, etc. Is this something I’d be interested in pursuing from a “Go back to school” perspective? No. I feel like I have an incredibly solid hand on things as a pain patient, and a refreshing perspective. I have a powerful voice I’m not afraid to use, either.

My contact is incredibly impressed with me, but when I received his e-mail reply, I read it twice and was immediately annoyed. It felt like another organization only too happy to take advantage of my contacts, intelligence, knowledge, and business sense. Smart people do NOT like or respect being used, so I haven’t replied. If that’s how it feels, then I am accurate in my assessment. I’m sorry, but if you want to have me consult, assist, or do anything that involves using all of my talents, I expect to be paid for it. I can’t dumb myself down or allow people to take, take, take and leave me unable to grow. In turn, I have decided to reach out to some local advocacy groups, even if I temporarily intern for a while, because I know that all I have to do is impress the right person. I can’t tell you how many times I have impressed someone and gotten into something new, simply by being myself. I wish it were always as simple as that, but it isn’t. I firmly believe the right doors WILL open this time. The ones that don’t might very well be kicked down, but that’s one part of me which often makes an impression on others.

If you search hard enough, opportunities will present themselves. However, I don’t want to advocate full-time. I want to achieve the goals I set for myself. Most of them are centered around writing and the others are centered around breaking out of my comfort zone. Perhaps I’m already halfway there.

I can’t believe this year is near its end. I feel like we were just saying goodbye to 2017. Tempus fugit! Pretty soon, we won’t even be able to talk about cold weather (I’ve been kind of obsessed with the way it has been affecting me.). For me, each year is about hitting goals and making sure I grow as a person. This year I have rid myself of toxic people and energy that was of no service to that growth. Interestingly enough, supportive friends stepped up where flakes were left in the dust, and I’m incredibly grateful and appreciative for the friendships that have been built on true foundations. In friendship, no one wants to be used, either, and I was definitely being used. No more.

Thank you to everyone who reads my work, who clicks LIKE, who clicks FOLLOW, and who shares me with friends, family, etc. Thank you for the comments and e-mails. But most importantly, thank you for taking time out of your day to read my work. The Internet is a vast place, and I feel honored whenever someone new follows me or whenever someone sends me an e-mail and tells me how much something I wrote impacted their life. Those are treasured, precious moments that I keep in my heart each day.

When I sat down to write this, I was already feeling incredibly lost, depressed, overwhelmed, unhappy, and dark. These are normally things I would only discuss with my doctor. He got an earful yesterday, and instead of making me feel bad (Far too many doctors dismiss me and look at me like I’m crazy for being concerned for my own health. That’s a clear sign you need a new doctor!), he told me multiple times “You’re not crazy. You’re not losing your mind. You’re going through a lot of rough things, and we’re going to figure out how to fix that, together.” He was clearly a lion tamer in a past life.). But as the words began to flow tonight, a smile appeared on my face and the negative feelings lifted, even if only temporarily.

There is so much more to my story, to my journey, to my life. More than I probably know. But ultimately, the majority of my gratitude goes out to my readers. You’re all amazing, kind, supportive, and I hope we will continue to laugh together, cry together, and be real for many more years to come.

Thank you all SO much. I’m not much of a hugger, but consider yourselves all hugged tight tonight.

Much love,

li 

copyright 2018 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED. All written work may not be re-posted anywhere without express written consent from the author. This authors’ work and personal photos are protected under United States and International copyright laws. Additional protection is covered under the Digital Millennium Copyright Act.  

 

         

Tough Times Calls For All Kinds Of Things

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While battling for proper diagnoses, finding the correct treatment method(s) is crucial to your overall well-being. For the better part of this year, I’ve had different people attempt to over-ride my intuition. I don’t like that. It is a surefire way to piss me off.

I don’t like being told what to do regarding my health, or anything else. It annoys me that I listened to their words and considered anything I was not completely committed to for even a minute. It upsets me that I didn’t fiercely hit back immediately with my thoughts on each subject. I, for some great, unknown reason, kept my mouth shut. Keeping my mouth shut is the polar opposite of who I am in almost all instances. Anyone who knows me knows I’m not known for biting my tongue.

Maybe it was the knowledge that I would have to move forward with someone new, and I need these people to maintain my medication, for now? I’m not sure, but that’s one solid reason to remain silent, even if you hate yourself in the process. I’m trying to survive in a bad situation and not come out any worse than I already am. I understand survival methods, we all do to some extent, but it’s not a good enough excuse for being silent.

Maybe I was hoping these physicians were “having a bad day” and didn’t actually mean me harm. However, that is precisely what occurred, and it’s not acceptable. No one should have to feel trapped in situations like this. I don’t like playing games. I don’t like the bullshit involved, and I like it even less when “healthcare professionals” are the ones slinging the shit. The people I am most receptive to are genuine. I can tell precisely who means well and who is merely repeating dialogue from some internal script. If you’re going to spout nonsense, I am not going to be receptive to it, or you.

When a doctor presents an option, it is genuinely okay to disagree with the methodology and/or their thought process. It is okay to have questions. You may be desperate as hell for pain relief (I am, but I have limits and boundaries, as should we all.), but you do not have to say “Yes.” when everything within you is saying/screaming “NO! Don’t do this. This is not the answer.” If other people have said “I’d like for you to try this.”, it is also okay to turn around and say, “You first. If you’re SO adamant for me to say something should be tried/done, then you go ahead of me. I want to see you cope with the pain I cope with and endure bullshit procedures and guinea pig testing.” You are not a “bad patient” for asking questions, for challenging the system, or for saying “No.” It is okay to decline medication you already know is not helpful. It is okay to ask a physician if you can try a previous treatment method that did help. Ultimately, if you are not being true to yourself, you have to put your foot down somewhere. I did. I decided that if my intuition was screaming at me not to do something, there was probably a reason for it.

What did I not do this summer? Trigger Point Injections. Why? For starters, intuition. My doctor never explained them to me when they were presented as an option, thus leaving me to be an educated patient and do the research solo, only to come away with a “What the fuck?!” moment as I counted the twenty-ish injection sites that would go into various areas in my neck and back. He only said “I’d like to try this to help relieve the tension in your neck.”, and that was the end of the discussion. He did, however, say to call if I had any questions, but subsequently I was handed an appointment and left the office beyond disheartened, and more than a little angry.

I went from being taken seriously to no longer being an “interesting patient”, so my feelings of anger and frustration are valid. That direct quote is in his notes from my first visit, “Thank you for this most interesting patient.” If I had a more established relationship with him, I might very well have kicked him (accidentally, on purpose) for how he treated me. Needless to say, this did not help foster trust moving forward. I do not think I will be returning to him. I am already discussing overriding my doctor’s office via the insurance company in order to get a second opinion. If you didn’t think you could do this, you can. Fact: Not all doctors are correct in their assessments.

Once I was fully educated on what the TPIs entailed, I called his office a week before my scheduled appointment and asked him to call me back. Minutes later, a nurse from the office called, asking if I “really needed to speak with the doctor or could she help me”. I wish you all could have seen my face in that moment, because it wasn’t a good one. I wanted to tell her something incredibly unkind, and in the future, I will not speak with minions. That’s a new rule I have chosen to implement. I’m tired of what I say being twisted and/or lost in translation.

Instead of actually listening to what I was saying and hearing me out, this nurse was rude, patronizing, disrespectful, and when I said I’d like to table the injections and go back to medication, I was told he wouldn’t prescribe it “because it’s an opioid.” You would think I had just asked for pure morphine to be injected into my veins daily the way she spoke to me. No, I asked for Ultram (that’s Tramadol, for those of you who have never heard of it.), which, having taken it in the past, I assure you is a safer form of pain relief. In all the years I was on it, never was I addicted, chasing a high, or doing anything irresponsible. If it could take my pain down from a high level to a tolerable three or four, that meant it was working. With this particular medication I was never asked to show identification when picking it up at the pharmacy, nor was it considered a “controlled substance”. I did not require a paper prescription when I needed a refill. It could easily be called into the pharmacy of my choice with no issue, and I never caught drama when I picked it up each month. I only had to see my doctor once or twice a year to discuss my progress. Apparently, it is now a scheduled drug. I did not know this because I don’t spend my days perusing lists of controlled substances. In order to be approved to take it, I was told I’d have to sign a “pain contract” and come in monthly (I assume for more drug testing. I’ve actually spoken with my insurance company about how often they are abusing lab work because of this methodology. Unless a physician is suspicious of you not being honest about illicit drug use, there is no need to screen them every single time they come into the office. That is thousands of dollars being billed for no reason.). However, when my doctor called me back he said, since he cannot find the source of my pain, that injections are all he can offer me at this time. He said he was not comfortable prescribing medication to me “since he cannot find a pain source”. He was open to discussing things further, but said he understood my hesitation regarding the injections. I have not called him back because I am legitimately angry that finding the source of the pain I suffer from daily was something he was not interested in doing. Why do people become doctors? I’ve met at least a dozen waitresses who were far superior at “helping people” than the average doctor. I was mortified to learn he will be presenting at the International Pain Summit in Boston this Fall.

As a result, I am not going to allow myself to be dictated to any longer. I am researching high quality CBD oils and plan on ordering one as soon as possible in my attempt to find some natural pain relief. It’s not a cure, but it’s a direction. I don’t want to be under the care of someone who does not look deeper for a patient and who denounces my pain as something that can be fixed via Cognitive Behavioral Therapy and/or Biofeedback. These things might work for some people, and good for them if it helps, but I can only deal with one set of issues at a time and CBT is not on the list of “how Lisa would like to spend her time”. I have so many issues to deal with and if I can’t dedicate 100% of myself, then it’s a highly pointless option. I will keep pushing to find out the source of my pain, because if my neck is miraculously “healed” (despite the arthritis diagnosis), yet feels like someone is jamming hot pokers into it 24/7, and my shoulder blades feel like they’re going to find a way to spontaneously detach themselves from my body on a constant basis, then clearly something is wrong SOMEWHERE and it needs to be located. I just have to find the right doctor who is willing to help.

I had to argue to get x-rays approved. I had to fight to get an MRI approved, and now, I have to fight to get doctors to take my pain seriously. I’m sick of it. I am sick of their attitudes, insinuations, accusations, ignorance, and judgment. Last time I checked, that’s not how any physician should behave. I have all the “patients’ rights” pamphlets telling me I am “entitled to have my pain taken seriously and I’m entitled to have it properly medicated and treated.” This statement is in every office I go to, and yet, I feel like my doctor tossed me out on the street for refusing the injections. That isn’t far from the truth, either, because, while under the guise of being a “spine specialist”, he is actually an anesthesiologist. He might have a sub-specialty, but overall, injections are his main goal. So while he was impressed by my bones and their anti-aging quality (I was completely dumbfounded over that. I suppose the bones match the face that is still carded for cough medicine.), the only option he is choosing to offer is injections. A friend told me I should be offered anything and everything at his disposal; not just injections and nothing else. She was horrified, and that added to my disgust.

Someone actually said to me, “If you’re truly in pain, you’ll try anything.” First of all, fuck you. Second of all, needles into and around my spine are not the answer. It’s actually quite dangerous. How is anesthesia, that will wear off within an hour or two, the healthier alternative? Who the hell wants to have injections performed every two weeks? Initially, he told me they’d last “up to eight weeks”. I spoke with people who have tried this particular route and they all told me I did the right thing by saying no. They proceeded to share their stories, most of which centered around the fact that they received zero pain relief from these injections. Many people told me it caused their body to flare-up, and left them down and unable to move much for weeks following the injections. Some people kept this routine up for YEARS, some for over a decade, all in the hopes that one day, it would help. In my mind, this is abuse of power at pain management centers. They push injections and refuse you pain medication unless they exhaust all other options first. I find it incredibly irresponsible.

I can’t see into the brains, necks, or spines of neurology/neurosurgical patients, but I know when I go to my doctors’ office and the place is PACKED (as in, with all the seating they have, and there’s a lot, sometimes you have to stand in the hallway or take a walk and come back.), people are not there because they enjoy it. Each one is seeking answers. Many people are there for a post-op appointment, for medication changes, follow-ups, or something far more severe, as there are many Multiple Sclerosis patients that come into the office. My heart breaks for each of them, because I understand. I see their faces, I look into their eyes, and I see their pain and can feel it in the air. I’m there for migraines, and you’d never know it because apparently I don’t walk around looking like a migraine patient (Let’s not get me started on #MigrainePose because that will, inevitably, be a separate conversation all by its lonesome. I am sure many of you have seen my posts clapping back against it on various social media outlets. I have NOT been shy about my feelings.). I have no clue what a migraine patient is supposed to look like, but I have zero tolerance for being judged based solely on my face. It’s tiresome, and yet, it happens all the time. My primary care doctor, without discussing my health issues with me, wrote a letter and declared me “perfectly healthy”. The woman has only met with me twice. A responsible doctor would have called me and asked what’s going on with my health, or made time to see me. Having anyone declare me “perfectly healthy” is incredibly disturbing, and it reinforces why I need a new doctor. She may be great if you only see her once a year, but G-d help you if you’re a complicated patient. The reviews I plan to write on every medical website she’s listed on should spread like wildfire from here back to where she went to medical school in Spain! That’s the current level of my wrath.

Like many people, there are certain levels of pain I can block out. It’s something we all learn to do over time, but once I reach my boiling point, there’s no way I can look or behave “normally”, whatever the hell that means. I have had to discretely take medication for the beginning of a migraine in public so many times, I have lost count. I’ve had friends and family say they had no idea I was taking medication at all because I didn’t discuss it. I never realized I tend to open a bottle inside my purse, take out what I need, and quickly take the medication, without a discussion about whatever it is I am taking at any given moment. Could be Aleve, could be a muscle relaxer, could be a beta-blocker, one never knows. Sometimes I excuse myself and take medication in private. People often assume I am not in any pain because I “look just fine”. Looks can be deceiving. I was recently told “You look great!”, and I simply didn’t view it as a compliment. Anyone who says those things, without thinking about how I will react to being told I “look just fine” or “look great” are the people who aren’t with me at 4:30 in the morning when I cannot sleep and I desperately want the pain to end. They’re not by my side during the never-ending days when every solitary sound is like a jackhammer to my skull, or feels like a train is using my head as its personal tunnel. They aren’t with me when my physical pain tolerance makes getting out of bed torturous. They’re not with me when I have to crawl from my bed to the bathroom, wanting to cry from how awful it is to attempt movement. They’re not with me when I am on day five of a flare-up that has cost me days of my life, time that should have been spent focused on other things. Leave it to some of the more callous people in my life to make remarks and make me feel bad about my limitations. Fact: It is NOT okay to tell someone one thing and then turn around and belittle and/or threaten them. It is NOT okay to denounce my suffering and pretend I am not going through hell simply because you’ve had a bad day and I’m the only target in sight for your rage. I might not always voice it, but this is a battle and it is a difficult one. And it REALLY isn’t right to have someone tell you “It’s good that they dropped the dose of your medicine. You don’t want to be on that stuff for the rest of your life. It’s like handcuffs.” One, I didn’t ask for this person’s opinion and two, that’s THEIR issue, it is not mine.

I would not take medication of any sort unless it was medically necessary. When medication is cut by 50% without a physician making sure that’s a safe thing to do, that is called medical malpractice. I am actively seeking out information regarding my rights because I cannot allow this to slide. To recently learn that this doctor chose to go behind my back and say there’s nothing wrong with me, and use the phrase “perfectly healthy” nearly sent me into a rage of mass proportions. My chart clearly states my diagnoses. The first three are severe. For her to actually write a letter and say “There’s nothing wrong with this patient.” is exceptionally low. Even now, still experiencing symptoms of stroke and seizures, worrying that my heart or kidneys will go into failure, I MUST advocate for myself and for anyone else this particular doctor might harm. If you’re going to take the Hippocratic Oath, you had better know what the hell you’re doing with a patient’s life.

The shining light in all of this was running into one of my former doctors while I was in a medical building at the end of June. It was one of those moments where you know it happened for a reason. I do not believe in coincidences. We crossed paths and it was an incredibly symbolic moment I did not expect to happen. It’s not often someone is genuinely happy to see me, but he was, and it was touching to me because I don’t ever assume people will remember me. We talked for a few minutes and, to make a long story short, he pulled some strings and got me in where he currently works, so he is officially my doctor once again. Without his help, I spent eight months jumping through hoops like a tiger in a circus act. In less than two weeks, he handled the situation and kept his word. I couldn’t be more grateful. The statue in his honor might have to be built sooner rather than later. 😉

I am still trying to figure out how I feel about being his patient again, aside from “safe”. I thought, maybe, it was taking the safe route, and/or, maybe taking a huge step back, but ultimately I feel like this was meant to be. I even discussed this with him and he understood my perspective.

When someone actually cares about their patients, devotes time to them, knows how to pick up a phone and return a call, and is the same person in and out of the office (He did NOT have to pull strings for me, nor did he have to stop and chat on his own time. I’m insanely grateful for what he did, and he knows it.), it reinforces my respect. I am not comfortable with the status quo of the medical community at large. I only like and respect TWO doctors out of all the people who are supposed to be treating me. These two physicians know how to listen. They don’t interrupt me. They are focused, which is incredibly helpful to me because right now, my focus is shot to shit. I have the attention span of a gnat, and that’s the opposite of how I am in my daily life. I respect a doctor who discusses my treatment plan with me, as opposed to issuing down a command/ultimatum. After all, I’m the patient and it’s my body and mind we’re talking about. If a physician isn’t involving you in your treatment plan(s), that’s a HUGE red flag.

I refuse to sit and be afraid to speak up, speak out, and/or confront a doctor. After an appointment in July, the medication issue, and finding out about this letter, I am left with the disconcerting task of confronting my Internist. I don’t know if she was thrown under the bus by another doctor and the medical director of her office (I wouldn’t be shocked if she was, but the letter she wrote pretty much sealed her fate with me.), or if she truly “went rogue”, as they claimed. Regardless, she did something dangerous and stupid, and risked my health in such a way that I had to contact another doctor and move an appointment up because I knew I wasn’t okay, and I didn’t think waiting was an option. I left the doctor a message and he personally called me back and gave me three different time-slots he had available (Yes, the doctor I ran into.). When a doctor says “If you called me from the parking lot, I would still make time to see you.”, that’s important, because so many are booked up months in advance and would happily hand your care over to a physician’s assistant or nurse practitioner. I agreed to see my Internist’s NP, but after going over her words and actions, especially as I waited for serious test results and only got someone to call me back after two plus weeks of calling the office, I am not pleased with the care I am receiving. It took all that additional time to finally get a referral to a rheumatologist, due to my test results which clearly shows inflammation within the body, and to receive an optometry referral. It took them nearly two full months to send me a letter and let me know that the eye tests I had done were negative. I knew this constant lapse in care was becoming normal when the nurse I spoke with said “They didn’t call you? They didn’t send a letter?”, after my umpteenth call regarding my inflammatory panels, and she sounded incredibly annoyed that neither had been done, because “that’s proper protocol”. I talk to this woman often enough that she knows me by name and is always sweet and kind to me. She promised me I’d receive a call by the end of the business day. It took an additional four days for this to be cleared up. And sadly, the nurse I spoke with was shocked, again, that I know how to read the results of complicated blood work. I kept calling to ensure I’d get the referral, I didn’t need her to clarify anything beyond that.

When you go into this particular office there are countless numbers of people back there. It’s not like they don’t have extensive staff on site. So someplace, somewhere, the ball has been dropped and is probably close to the Earth’s core by now. But as a patient, it’s not MY job to be making a million phone calls to get a fifteen second voice mail message in response and have them log that into the system as a returned phone call. My insurance company warned me back in March that I would probably spend this first year holding doctors accountable and making a lot of phone calls, but the fact that I also got a case manager to assist me during all of this insanity is, possibly, the reason my doctor is pulling some of this crap.

Doctors are abusing their power as they see fit. They are abandoning their patients as they see fit. They are, without question, DOING HARM. It falls upon the strong, the smart, and the fearless to stand up for patient rights and speak out about the shady shit doctors are doing, under the guise of following procedure. If you can’t find something in your medical records, especially since everything is online these days, something that has apparently been said, or you were not privy to a conversation or decision, or, like me, a letter, SPEAK NOW. Call your insurance company and file an internal grievance. Know your rights. Follow your intuition. Make sure medical decisions fully involve you, the patient, and if they don’t, and you don’t feel comfortable with something or someone, make your voice heard. Because if you don’t, they win.

I have affiliated myself with 50 State Network to advocate within the state of Massachusetts, and beyond. I strongly suspect it will inevitably become more. When people hear me speak in public, they are blown away. I generally don’t think much about it. I could be in front of twenty people or twenty thousand, and I would still speak the same way. I will still be strong, articulate, witty, sarcastic, and real. I make direct eye contact that tends to make people uncomfortable, but for me, it’s all about being heard.

As an advocate, I will be having discussions with politicians all across the board to make sure pain patients and people with invisible illnesses have a strong voice supporting their needs. If you knew how much I despise politicians, you would all send me gift baskets now, and lots of Dr. Bronner’s liquid soap (Peppermint, Lavender, and Almond are my faves.) because I will need to shower four times a day to keep away the reptile reaction I have when surrounded by politicians, many of whom are lawyers. All jokes aside, I am nothing if not a powerful voice and I’m not afraid to use it. This is a healthy outlet and it motivates me to do something I would never have chosen to do on my own. For the handful of people who encouraged this, supported it, and told me I could do it, I thank each of you. It’s amazing, sometimes, how people get to know you and immediately see a pillar of strength, instead of someone who is still, after all this time, searching, hoping, praying, and trying to remain positive, even when her head is full of negative thoughts much of the time.

I have been living in so much darkness, struggling daily for every movement, for cohesive thoughts, for the real me to shine through at all times. I do not like failing at anything. When people compliment me or commend me for a job well done, I stare at them in disbelief. For someone who is not a Type A personality, I am always taken aback by compliments or any positive recognition. In essence, it’s sad, but on the flip side, I realize it means I’m not egotistical. Hooray for the bulldogs! (If you got that reference, I hope it made you laugh.)

The remainder of the year into next (Believe it or not, I actually have a doctor’s appointment on New Year’s Eve. It was the only available appointment for 2018. I was mortified, and I still might go to someone else, as opposed to yet another person affiliated with my “doctor” and her office. It’s not like this person is the only optometrist in the state that takes my insurance!) is going to involve a lot of doctor’s appointments, and several treatments/in-office procedures, few of which I can say I am looking forward to. These are not fun experiences.

I feel terrible, guilty, ashamed, and much like a failure for not being able to write as often as I once did. I’ve watched my numbers slip dramatically this past year and a half, and I feel like I am letting my readers down in some way. I apologize. I feel grateful that many of you have followed me on Instagram and get a sharper glimpse of me as a person on a daily basis, and I am incredibly lucky to call many of you my friends in real life. That means so much to me, especially when I have bad days, which is mostly every day, and can’t focus on my intended goals.

I never dreamed or imagined I could ever, or would ever, be sick like this, permanently, and lose out on amazing opportunities, but most of all, lose out on my life. I’ve suffered for so long, I don’t even know what a normal life looks like anymore. I say that not to gain attention, sympathy, or garner pity, but to share my feelings.

I remember, at the very beginning of all of this, when my mother confessed to a friend that everything she had hoped, dreamed, imagined, and wanted for me was being taken away. It was very early at that time, I didn’t even have the additional diagnosis of Fibromyalgia hanging over me, but I felt so hurt; overhearing how my being sick was somehow this huge disappointment; for her. I felt incredibly betrayed by what she was saying. Eventually, I tried to convey how much I didn’t want the things she was talking about, but inevitably, I decided those dreams would have to skip over me and land on the next generation.

Here I am, all these years later, still sick, my mother has been gone slightly over ten years, and I simply don’t know if there will be a “next generation”. I have a pain in the ass relative who is overly obsessed with my ovaries (I could not make this up if I tried.), constantly sending me articles about how I need to “get a move on”. Coming from someone who does not want children and eschews marriage, I find it incredibly despicable for her to be shoving this crap down my throat on a semi-regular basis. I have kept my mouth shut every single time she’s pushed and pushed at me, and I swear it’s the miles between us, and nothing else, which keeps me from strangling her to death. She does not seem to realize it is hurtful and insulting. She does not seem to understand that I have boundaries. She simply thinks everything is open for discussion, at any time, simply because it’s what she wants to discuss. I can’t help but find it rude and degrading. I’ve talked about it with a few other women and each one agreed that it was disrespectful, rude, and unnecessary, not to mention heartless as hell.

A few months ago, I had the sweetest lady tell me I am going to be an amazing wife and mother. She raved about how smart, talented, and pretty I am. She had just met me, but she gave me the same level of comfort as though my own Grandmother was speaking. It made me cry that day, and it’s making me cry again now.

Sometimes, a stranger sees us with more clarity than we could ever hope to see with our own eyes. And some days, you have to know in your heart that you were put in a person’s path for a reason. Not because you needed to hear things you already know, but because you needed to hear someone else say it with conviction.

I don’t think people understand exactly how invisible illnesses, especially those that reach a chronic stage, are incredibly isolating. At first, it’s friends and family, people you thought would stand by you no matter what, and suddenly, you can be in a place with over 30,000 people around you, and still feel like no else in the world is present. You still feel like a solitary creature. You still feel every ugly thought and feeling rise to the surface, your pain edged against every part of you like the worst kind of knife, even as you’re smiling and enjoying an amazing experience. A lot of people tell me they always say “I’m okay.”, because they don’t want to be perceived as complaining. I NEVER say I’m okay. My first instinct isn’t to lie or reply the way the majority of the world does. You could be a Barista taking my coffee order and if you ask how I’m doing, I won’t give you a boiler-plate response. I know this jolts people, but for me, it’s important not to be dishonest. A lot of people don’t understand this practice, and that’s okay. They aren’t me and they don’t have to live with my thoughts.

Authenticity and honesty are crucial to me, and even more crucial to how I live my life. Anytime either is placed into question, whether the person knows me or not, it is the quickest way to get me to go from zero to bitch in less than a second. There’s no dialing it down or attempting to pull back once an accusation is made because I immediately see red. If you know me, you know I don’t wear the color red. Occasionally I’ll wear a shade of red nail polish or a red lip color, but it’s so infrequent that it’s not usually an indicator of anything. But if I walk into a room wearing a red shirt; that’s not a good sign. Almost everything I own is a shade of blue, grey/silver, black, white, or purple. It took me years to realize my color choices are intentional. They are likely indicative of my aura color, but they’re also the colors I am most drawn to in all things. Red is a warning, and it’s something I’ve become highly aware of over the past six years. An old friend once told me I’m “really aggressive” when I walk into a room wearing red and black. Overall, at this stage any way, I’d say I’m “really aggressive” if you cross a boundary with me or I don’t trust you. I don’t believe in offering blind faith.

So as I sit here in excruciating pain, unable to sleep, filled with doubt and worry, sick to death from stress, dealing with a brutal migraine, I hope with my whole heart someplace, somewhere, someone is looking out for me and looking over me. I’m following my intuition and trying to allow it to guide me, but some days are a hell of a lot harder than others. 😦

Am I okay? No. Maybe someday, my answer will be different.

(If you need me, I’ll be at my doctor’s office. Pretty soon they’re going to have to engrave my name on one of the chairs. When a woman schedules a doctor’s appointment on her birthday, that’s a testament to how bad she’s doing. Thankfully, I’m in good hands.)

copyright © 2018 by Lisa Marino & Blackbird Serenity, LLC. Further protected under the Digital Millennium copyright act. ALL RIGHTS RESERVED.

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