It's not what you are eating, it's what's eating you…

Posts tagged ‘#MedicalAdvocacy’

Physicians with biases ARE physicians who HARM, even if it’s unintentional…

 

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Disclaimers: I am NOT a clinically trained or credentialed medical or mental health professional. NOTHING I say should EVER be taken in lieu of professional medical and/or mental health evaluation or treatment of ANY condition.

I can ONLY put my opinions, where I hope to help people, where I have in guiding them, at the very best, simultaneously,  at the same time to get the best medical or mental health treatment, from trained clinical professionals, in an appropriate setting , such as what I do with gastric bypass patients in various scenarios with gastric bypass reversals, among other things.

BUT,  what I have to say about how various biases carried by physicians and the potential for physical and emotional harm, still needs further civil, respectful and responsible but sometimes when appropriate, critical discussion, not ONLY by patients but the actual medical and mental health professionals within their own  communities.

I ONLY believe though, when dealing with a provider who one might feel is showing bias that effects one’s care,  of discussion of potential  misbehavior, if  one feels that they’re being treated unfairly or unreasonably, because of that bias (I’m talking about appointments, not to the point where blatant physical or emotional malpractices have occurred) of filing a grievance, if a discussion doesn’t resolve the issue and/or finding another physician.

It is NEVER okay to threaten the emotional or physical wellbeing of anyone, including a physician or any provider, for biases and if depending on the degree of physical and/or emotional harm has occurred, if that’s an actual issue, there’s legal remedies one can look into and/or take.

That’s it, making or threatening a physician’s physical and emotional safety and wellbeing is NEVER okay (more will be elaborated about that, in the content of this blog).

Also note, I have people I associate with where they may find my communication style at best, offensive, because I’m kind of open with my various disabilities and with those disabilities, it’s difficult for me to be concise or write well, even if this topic definitely needs discussion and resolutions.

***

All I wanted to do last weekend,  was to  have an okay weekend.

Let me explain, as most people know, that due to my disabilities, that I don’t have anything normal in responsibilities, like people my age do.

But in my case, I kind of dread weekends, while my blogs have been both personally and as an activist, VERY serious as of late, it’s kind of scary where I live, because on weekends, when staff isn’t here, people are more likely to act out.

Even with cameras, unannounced drug sniffing K9s and security during nights and weekends.

While I explain to those few about explaining where I live,  that 1/2 the building where I live are good to have as neighbors, the other half is people who have issues with drug addiction and what it takes to support an illegal drug addiction (dealing and/or other illegal and unsafe behaviors to support an addiction of themselves and who they associate with) , if one’s on their way or headed to rock bottom, especially for poor people, it’s not a fun thing to live amongst, even if I have some empathy for non violent addicts.

The best way I can describe where I live is my building is like a stupid drug cartel that’s badly managed and a church had a baby.

Seriously and it’s NOT funny or fun to live in, even though I’m grateful for my housing.

Also as a serious activist, if I’m going to point out where doctors fail patients in under medicating patients or being afraid to use opiates as a last resort, I also have a responsibility as an activist, to do no harm, myself.

To either patients or providers or to anyone.

The last thing I’d want to give the impression, as an activist,  is that people can be complacent nor would I want to enable, when it comes to the potential of drug addiction or feed into a denial pattern, if they actually are in the midst of drug addiction or heading into drug addiction with either prescription or  illegal opiates.

I know it sounds like I’m digressing, please be patient, I will make my point when it comes to physicians and their biases and how it harms.

Because of all the clinical data I have to read, both as a patient and as an activist, who’s trying to find answers both to opiate addictions and obesity surgery complications, is by using Google.

So when last Saturday night,  it was in my suggestions on Google,  to check out a physician driven site to support and educate medical providers, especially as it applies to interventional pain management or obesity related issues (among many other medical topics but those were the 2 most talked about ones, as well as ones I’ve discussed ad nauseum in this blog in the past) , I didn’t need that site, to know that bias among physicians was horrifyingly pervasive and permanenting who apparently were WAY unaware that they had a few of these awful biases that I’m going to discuss in this blog.

I just didn’t need to see it on Saturday night, when my building was a hotbed of not life threatening criminal behavior due to drugs, but it still was scary because you don’t ever know when that’s going to escalate.

I happen on that physician site to read an article a blog that  a pain management specialist wrote,  who was trying to make a point on how tricky it is to do pain management using a popular stereotype that’s perpetuated not only with non physicians, but within the medical community.

Patient #1:  was a morbidly obese patient who misused opiates claiming she was under medicated, that she was treating who had  needed a double knee replacement and severe  back pain  due to a disc issue (and apparently her inability to stop eating for more than a minute)  and had mental health issues and when the physician pulled her meds due to her non compliance and her quite clearly expressing the patient having NO willpower whatsoever, that patient trashed her online, so she thought, as right after that happened, she received a bunch of negative reviews on a bunch of medical websites.

Patient #2: Very friendly thin patient perfectly compliant dying of cancer, who used a moderate amount of opiates sparingly, despite her severe intractable pain due to terminal cancer with mets and in this instance, the pain management doctor had a nauseating borderline reverence, for.

I will admit, that I’ve had that kind of prejudice similar to patient #1 even though I’m not known for compliance with most meds, other than narcs due to high tolerance (and how I’m resolving that, will be in another blog, soon).

But that blog by that pain management doctor, hit me way harder as an ACTIVIST.

This is what I know to be true, due to the  activism that I do.

Bias can kill patients not only from physicians even if it’s not intentional, due to stigma, as well as by,  non physician peers.

I get that all the time, when I have to talk to a gastric bypass patient with catastrophic complications, into what may be right for them, such as a a gastric bypass reversal, who’s going to die, has a BMI of 19, even with weight loss of 200 lbs and NO surgery to correct extra skin, so their BMI is actually even lower, when that’s taken into consideration, but they’re afraid of and what’s worse, is their current bariatric surgeon is afraid of doing a reversal, in case they become morbidly obese, again.

Where they are more likely to DIE from their catastrophic complications, before Obesity again could put them in mortal danger.

Or in the case because I’m a body diversity activist and find thin shaming repugnant, if I say that someone who’s thin, they’ll usually share their skinny shaming stories and if they’ve had a past or current history with bulimia and/or anorexia.

Or when I see within the weight loss surgery community, patients who get very thin because they’re terrified they’ll be fat again, not realizing that it’s not ideal, it’s actually unhealthy,  to be exercising intensely like an athlete, on 400-1000 calories a day, not only does that make them more at risk for exercise related injuries, it kills their metabolisms, in the long run, if not creates other health risks.

So doing behaving that way is no insurance policy that a bariatric patient won’t gain weight again or have any other severe health problems.

Or if they have bariatric surgical complications, quite a few bariatric patients actually think they deserved them, because they were fat in the first place and had to resort to bariatric surgery.

Or when patients who are morbidly obese to medical and mental health issues and want bariatric surgery or to lose weight, they sometimes become obese due to inactivity due to their health issues and their medications, they can’t have their total knees without losing weight or their bariatric surgeries and they can’t lose weight without either surgeries and are absolutely in a no win situation.

With weight stigma, especially when it comes to Obesity, it hurts both fat and thin patients.

With fat patients, they hate getting medical care, because if they go the doctor for strep, it’s going to be blamed on their weight.

And it shouldn’t be any surprise but it will be to providers, if they have fat bias, the patients who they are treating are FULLY aware of that and that’s why people of weight loathe to seek medical treatment which can sometimes kill a patient, but even at unfortunately, at best,  unnecessarily makes getting any kind of medical treatment, a lot harder than it should be.

It also hurts and potentially harm  thin patients, because they may less likely to think they could have health issues, and their physicians feel the same way, because if they’re a “healthy” weight, it’s presumed, that they’re actually healthy,  when they may not be.

With opiates due to stigma, if a physician has a patient who’s in intractable severe pain, there is a risk they will self medicate and possibly harm if not accidently kill themselves,  they engage in unsafe and unhealthy behaviors to treat their pain and/or they kill themselves, if they aren’t appropriately medicated and/or suddenly taken off their medication.

Especially now, with the opiate epidemic, patients who are compliant, but have been on opiates for a long time are now starting to die, because they find a dealer and/or patients are actually commiting suicide, becoming collateral damage because of the opiate epidemic,  due to unbearable physical pain, because they don’t feel they have any other options and they have no quality of life and they have no options as a last resort for pain.

Absolutely NO physician should be congratulating themselves or encouraging as a positive behavior,  that a terminal patient has great “willpower” by not using opiates for severe intractable pain, if medications are working properly, when the risk of addiction in that patient is next to nothing and the patient is ONLY afraid to take opioids, because of stigma due to drugs, and would rather die a horrifyingly  painful death than be considered a drug addict due to stigma , even if the patient is going to DIE.

NONE OF THIS IS OKAY!!!

I’ve said this before, as a medical activist.

HOW and WHY, in this evolved technological era, why are people becoming MORE backwards in our society, has to be discussed openly, without stigma.

BUT medical and mental health professionals take an oath to try and not do harm.

IF they have personal biases, regarding fat patients, challenging patients to treat or mental health patients and/or any other kind of  biases, who are coming to them for any kind of treatment, they OWE it to their patients, to give them the best possible care.

And they can’t do that, if they have ANY kind of  preconceived particular bias towards ANY population of people.

In the defense of physicians or any medical or mental health provider, while I’m not excusing bias that limits their ability to care for their patients, they shouldn’t have to worry about physical or emotional harm, either.

Also patients LIE, like all the time or don’t even realize the dangers if they are aren’t lying a lot, but about things that may seem trivial to them but it’s not and it makes them a liability to both themselves and possibly their providers, especially one who is prescribing narcotics to them.

But even if 9,999 out of 10,000 patients are lying, especially about what they’re actually ingesting, all of them deserve to be given the benefit of the doubt, especially if the 10,000th patient may be, if not, is actually telling the truth

Every patient deserves an individual patient tailored approach to their unique physical makeup being able to feel safe with their medical and mental health providers.

Every provider should feel that they don’t have to worry about being physically or emotionally harmed, because they say something or take a course of an action that a patient doesn’t agree with.

Patients should just stop seeing that provider in that case, in case of negligence or harm, consider a legal remedy, that’s it, if a reasonable (as patients can be respectful, responsible and critical at the same time) discussion or resolution is NOT possible with a provider and/or seek a different provider, if possible

But pretending that bias doesn’t exist, that it can harm patients in their ability to get appropriate (and sometimes lifesaving) treatment of their health conditions,  that resolving one addiction and not addressing the nature of addiction, can lead to another, is harming people, both patients and providers, alike.

Because we aren’t having the responsible and respectful dialogues we need to, as as society,  because of STIGMA.

So while I will hold a physician to the hippocratic oath, it couldn’t hurt anyone, if we actually all took it.

Note: Constructive feedback, only.

Also note: Again, I believe in both any of the obesity surgeries AND opiates, as an absolute last resort. I’m not against any weight loss surgery, I just have a unique situation in being one of the more long term gastric bypass reversal patients out there, of being asked about that, a lot.

As it applies to opiates, I have lost people I’ve cared about due opioid addiction as well as see it in other case, such as described above, ruin people’s lives, so again, it bears repeating, I’m not trying to feed into or enable the opioid epidemic, as an activist.

Although, I’m also not going to apologize for being supportive of invasive medical treatments for different health issues, i.e. both obesity surgeries and opiates, but I will always strongly urge people when you take drastic action, make sure you have a long term plan, are well educated and are well supervised, medically (and mentally), life long.

Nor am I going to apologize for the length of this blog, due to the sensitive nature of what I addressed in this blog,  that I had to so  comprehensively and fairly, to do  justice both to patients and providers, alike.

And if you saw at times, what frightening words or phrases sometimes end up in search engines for my blog, well you’d understand better, why I have to have such a lengthy in depth disclaimer.

Thanks!!!

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Hi, my name is Lisa and I’m NOT a drug addict….

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Disclaimers: I talk about opioid addictions, opioid tolerance, weight issues and other things that could potentially be sensitive to my readers and I understand that.

While this blog is personal in nature, I’m NOT just advocating for myself, especially after finding out some frustrating  news personally 2 days ago and real news about 5 minutes ago regarding the long term usage of opiate pain meds in those who suffer from severe chronic pain.

But,  I realize personally and as an activist, there’s been a lot of tragedies as of late, it’s not that I’m not sensitive to that and my heart hurts for people who’ve suffered unimaginable loss whether it’s due to addiction issues or such as the horrific tragedy in Santa Fe, as well as I have people that I know and care about who have themselves or loved ones,  life threatening conditions but don’t talk about them and never complain.

So please don’t read, if it could potentially be hurtful and hopefully you’ll respect that I’m NOT just trying to advocate for myself and I’m honestly not looking for sympathy.

And I apologize for how wordy this is. Not only is it tough to be concise for me, in a lot of pain, this is a topic that at best is a serious quality of life issue and at worst, possibly life or death, unnecessarily so, as I’ll thoroughly explain.

Thanks!!!

Editorial Note: After publishing, I realized I left out my normal disclaimer about seeking acute care for people in crisis by clinically trained professionals, I realize why I might have originally not thought to post it, given the fact that while I will ALWAYS advocate for people to be under the guidance of of clinically medical or mental health professionals, the topic of the blog is about the failure of a lot of a physicians, while well intentioned from a lot of them,  when it comes to being adverse to dispensing opioids, I’m NOT a clinically trained professional, I can only give my opinions on matters, but NOT medical and mental health advice, evaluation and treatment should ONLY should be taken from a professional,  in an appropriate setting and if someone is in crisis, they need to contact 911 (and or emergency services in their country of residence for out of country readers).

I apologize for omitting the above.

***

In HER defense, she did WARN me.

Meaning. when I was first put on pain meds, a little over 14 years ago, my long term primary care physician after the majority of non narcotic pain meds,  pain management and anti-seizure meds like Neurontin, among other prevention pain meds, I was warned that eventually, if I was on them long enough, they would no longer work.

I’ve had a long history prior to EVER being on these meds, of being strangely over tolerant or prone to the worst side effects of so many meds in all different therapy classes and all delivery systems, when I had 4 epidurals prior to my son being born (none of them worked) over 25 years ago, nearly dying in labor over 15 years ago due to anaphylaxis because the 1st 2 epidurals didn’t work, the 3rd one for 45 minutes and the 4th one sending me into anaphylactic shock(which she, my pcp/prescribing doctor for all my meds is FULLY aware/has witnessed, as she delivered my daughter) and, I’m not easily anesthesized  with either general or  local anesthesia.

I’ve wrote more than one blog about opiates both personally and as an activist, as well as the labelling I’ve dealt with both post bariatric surgery and post suicide attempt which was almost 10 years ago (well, in August) especially once being diagnosed with mental health issues.

As well as being honest about having an addictive personality, in my case it’s tobacco and sometimes food.

I suffer from severe daily headaches (which opiates actually make worse) fibro, degenerative disc and severe neuropathic pain, both widespread and locally.

I gained 30 lbs (more about weight in another blog) starting in late 2016 throughout 2017.

However when my bilateral neuropathic foot pain (It’s not diabetic, been tested for that I am b12 deficient, the lowest it’s been since my reversal) got so bad 7 months ago, it kind of mentally broke me.

In my fitness heyday, I used to get an endorphin high from intense exercise, working out at an athletic level prior to 2007.

When I resumed walking again in 2014, I got the reward of that I could still walk.

It would hurt like HELL, afterwards, as my degenerative disc sits on my sciatic nerve, but I had a sense of accomplishment for someone who did so little and because I have a tendency to wildly fluctuate in weight post reversal but found my groove with walking lost over 50 lbs in 2015 (and at that time was over 60 lbs from my all time heaviest) and while I didn’t feel the greatest, carrying less weight at least helped with rib pain, as I have a tendency to carry a lot of weight in my midsection and have rib pain as a result of it.

And in the last 2 months alone, I’ve resorted to food (not eating tons but with metabolism issues to justify how much weight I’ve gained) gained another 30 lbs and am the heaviest I’ve been in the last 8 1/2 years (which I’ll also write another blog about).

About 7 months ago I found any walking caused an enormous amount of severe neuropathic foot pain, that made walking not worth it, as I started a walk, in the same amount of awful additional pain like I used to feel at the end of a long walk (I used to average 20-40 miles in a week until late Fall of 2017).

It put me at risk for falling, which I have. It put me with having such intractable severe pain widespread and locally to the point my medications which is a fairly high dose (not subjective as I’m on a higher dose than most post surgical patients but less than pallative/hospice care) that my current medication regimen couldn’t touch the pain I was in.

It also put me in more physical pain that’s unbearable 99% of the time and even if I don’t complain (which truthfully I do complain a lot) it emanates out of me, as sometimes I’m in so much pain, I can’t breathe (it’s not cardiac or pulmonary) or speak and I’m unintentionally even if I try to hide it, scaring those who see or care about me the most.

I still get a controlled amount of medication not exceeding MMEs for severe chronic pain peeps.

I get 2 doses a day.

I’m not saying how much medication I’m on, in strength or what I’m on.

I’ve noticed for the last 2 years (it’s been 3 or 4 since my strength got raised) that for a high dose, it didn’t work well.

The last 2 months especially, I’ve noticed that it was super hit or miss if the meds worked at all, not even helping with being so inactive and being so limited on the most basic of things to do for myself, such as walking and shopping by myself that I stopped doing that, if I had to do that by myself.

I would every 6 months or so for the last 2 years I’d ask my doctor if I could go higher in my strength.

Then finally with the fact that I’d have trouble losing this weight given how much severe pain I’m in the last time, I finally asked on Wednesday not being able to bear this, with my physician,  if BOTH my dose and frequency could be raised, as any less than my current strength, doesn’t work very well.

I get the pressure that doctors up against with the opioid crisis, I’m not going to repeat myself, I’ve discussed this in MANY other blogs, as well as I’m not insensitive to the horrific deaths that of occurred because of it.

The problem is some people who wouldn’t be looking for a dealer normally now, are starting to die, because they are in so much pain, that when they get pulled off their meds, suddenly they don’t know how to cope with such severe life limiting pain, so some people are dying, tragically, because even though they were compliant with their pain meds, once pulled off, they don’t see any other option than finding a dealer to get illegal substances and are now accidentally are overdosing or at risk for that and addiction, where they wouldn’t be otherwise, if opiates weren’t so stigmatized, overregulated and not option now for those who aren’t terminal, even if they tried all kinds of therapies like I have and non opioid/narcotic/controlled substances but they didn’t work.

And while I know from the pain, I live in a place where drug addiction and unfortunately accidental overdoses is rampant. My local EMS people are probably in my apartment building because of that, about 3-4 times a week administering Naloxone.

Not everyone in my building or on my block is a drug addict or distributor but quite a few are.

And it’s terrifying to live amongst them, if I’m truthful, even if I’m empathetic to their disease, as far as the addicts are concerned.

When I talked to my physician in the morning on Wednesday, she really was at a loss what to do with my opiate tolerance, she knows I don’t get high from narcs, she didn’t feel comfortable raising my meds, at first suggested either other opiates that I haven’t tolerated well, if not terribly and then asked if she could consult her pain management specialist at her facility and call me back that evening.

Which when she did call me back Wednesday evening, I found that I’m going to be taken off my medications (I’m on other controlled substances which I still receive a therapeutic benefit) being given the opiate party line that most providers are using now.

I’m NOT mad at her. I know she is doing what she only feels is right, ethically.

And she always has had a holistic approach to health.

And while we always respectfully agree to disagree, I vehemently disagree with this decision given the dire consequences it’s already going to have on my life that’s been reduced beyond recognition, something she would know, as she’s been treating me for so long.

I ONLY found out early Friday morning, that Medicare and a lot of health insurance companies are no longer going to cover opiates in any other case except cancer or terminal cases, starting in 2019.

Ironically, prior to knowing my medication status from a prescribing and insurance perspective, after mulling it over for the last 2 years, 2 weeks ago I signed a DNR.

I haven’t been able though to leave my home or get out far enough by myself to get my DNR notarized and filed, because my pain levels are too high.

When I last saw my primary care physician at an appointment, in  the end of March of 2018, I asked her about it and she said that she would do her end and  that she respected my right to choose that.

It’s pretty extensive DNR that I’ve filled out, NO life saving or life extending measures of any kind.

Only comfort care measures are in my DNR.

And guess what, the person who has all these issues with oral medications, is super sensitive to most  IV meds, including narcotics, most I can’t tolerate at all, others I have to be treated for migraines and hives, so it’s good all of that’s in my DNR, if I can’t speak on my behalf, it will for me.

I’m NOT suicidal.

I don’t get a choice of disability sets, and how they are rapidly changing me medically and cognitive  I don’t get a choice at all going forward, of therapeutic treatments, but thank goodness at the age of 48, I get a say so on WHEN I can die, if it’s not mental health related.

And it’s NOT.

I feel terrified and devastated , like I’m sure other people who are in similar situations like I am, where they’re going to lose meds that are a last resort but help so much in quality of life and they are going to spend the rest of their lives in unbearable pain.

AGAIN, this is NOT about being insensitive to the opiate crisis and the deaths from that.

This has EVERYTHING to do with physicians, government and insurers saying because I’m not a drug addict, I don’t get anything even though pain meds for me were a last resort.

I’ve said as an activist, wisely, in the past,  that “you can’t legislate addiction away”.

Even more sadly,  is that I get that if I wasn’t lucky enough to escape intractable severe pain, at least I was spared an addiction to drugs and in my case I’m committed that if I can’t get pain relief from a physician where the meds and my usage is monitored, that I don’t want the HELL, that comes from the desperation that both legal and illegal opioid addiction creates, nor do I want to die that way.

I see how bad it is to live that way, where I live and I just don’t want any part of that, but am grateful that it is still a choice for me and I get that it isn’t for everyone.

I’m also not mad, nor am I saying with malice, had I become addicted to pills and then found a dealer and became addicted to illegal substances,  I’d get methadone or Suboxone.

BUT, because I’m not a addicted to drugs, I am NOW going to get NOTHING.

Again, I’m not saying anything to try and hurt those who’ve lost loved ones due to opioid addiction.

But all sides of the Opioid Epidemic should be heard, including those who are going to be victims being sentenced to a life of uncontrollable severe pain because they’ve exhausted other therapies and nothing else works for them.

Because while it’s well intentioned at best, it’s repugnant at worst, getting rid of the ability to access opiates safely and affordably and with monitoring,  will ONLY make the opioid crisis worse for almost everyone, as some people will skip even mentioning having pain and go straight to dealers, as well as it’s going to be a deadly dangerous dealers market, with prohibition of access to safely allocation and monitoring of legal opioids.

Not only at best is it  naive to think this doesn’t warrant more of a discussion on how to deal with those in crisis with drugs, it’s deadly and just going to feed into the epidemic more of more people becoming addicted to street drugs, no longer  having safe access with monitoring of legal opiates, even if they were compliant.

And those of us in crisis or could be, due to unbearable pain and have to live the rest of our lives that way, going forward who are no longer going to be able to access medications that give us any kind of quality of life, who are responsibly using them, is a travesty, don’t think it’s anything other than that, and as I said above, has the potential to have deadly consequences on people who normally wouldn’t engage in such unsafe behaviors but can’t handle a life with such severity of pain and no safe options, any longer.

I can only use my voice and hope that other patients, physicians, pharmacists and others who have similar concerns, speak up as well, to rethink how to best serve those in crisis and not put people in jeopardy like they are now, who wouldn’t normally be at risk but are now.

Note: I will ONLY publish constructive feedback or dialogue. And again, I apologize for how wordy this was, but there is so much at stake, not just for myself, as I’ve stated repeatedly but thousands and thousands of people.

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