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

Note: Sometimes I have to digress to make a point, due to disabilities . I’m continually told as an activist but not a  clinically trained professional that my insights are valuable to others, by both patients AND clinically trained professional medical and mental health professionals who’s guidance and input I seek, both personally and in regards to the activism I do.

Because I realize that not only do I have to be my strongest advocate in my own care, but for those who don’t have a voice. Or those have consequences due to stigma due their own truths, for many reasons, personally and professionally.

While I will always strongly preface any of my (or anyone else’s) medical and mental health blogs that nothing can replace evaluation and treatment for  medical or mental health issues , in person, especially while a patient is  in crisis, the obstacles that both patients and clinically trained providers are up against,  will be clearly evidenced in this blog.

Here we go….

According to the National Safety Council, in 2015, over 38,000 people died due to traffic fatalities. Another 4 million people had to seek medical attention of some kind, due to being in a traffic accident.

That’s the largest increase in 50 years, which is quite alarming. While I could hypothosize the many reasons what’s played into that, such as distracted drivers, there’s probably many variables that I’m sure anyone could get more information on, by researching like I have, statistics from Department of Public Safety, National Highway Traffic Safety Adminstration and other related organizations.

This has to STOP. And the best chance of doing this is by making the manafacturing of cars and motorcycles, purchasing them and driving and riding in or on them, ILLEGAL. There are many options to reduce the need for cars and motorcycles these days.

People could take public transportation, people could live close to their workplaces and their children’s schools. There’s bicycles and of course walking which also has the added health benefits of exercise.

Although anything potentially on wheels, can have grave if not fatal consequences on people and people DIE everyday as a result of that.

Win/Win situation for EVERYONE, right? I mean everyone knows someone who has been seriously injured, if not sadly killed in a traffic accident.

THINK OF HOW MANY LIVES COULD BE SAVED IF WE BANNED MOTOR VEHICLES for the private sector and strongly regulate ANY form of private non motorized transit that’s on wheels?????….

And before you y’all think I lost what’s left of my mind and spelling abilities when I reference the “other O epidemic”, I know automobile is spelled a-u-t-o-m-o-b-i-l-e not o-t-t-o-m-0-b-i-l-e, and NO, that’s not what I’m really referencing or the reason for this blog.

The reason for this blog is the “Opioid Epidemic” and how the fear of both prescription opiates and illegal drugs is causing not only a war on drugs but a WAR on patients who need these medications, not only as a last resort but also as a long term solution for their severe chronic pain.

I don’t discount at all, from all different agencies, whether it be the CDC, NIH, FDA, SAMSHA and AMA, the concern about how many people are either accidently overdosing on prescription opiates, or it becomes a gateway to illegal drugs and not only the deaths that go along with an overdose with drugs like that, but what tragic deaths that also OCCURS, in the process from manafacturing, distribution and consumption of all these illegal drugs that are out there, is also killing thousands of  people.

In 2015, the death rate was approximately the same for drug overdoses as it was from traffic fatalities-approximately 33,000 people died from overdosing, annually.

People might think that I went way out of my way to be wordy ,with my ridiculous traffic analogy, but that’s what type of excuses are used by medical and mental health professionals when it comes to prescription medications, medications I’m talking about are prescription opiates.

I’ll give what I think the AMA and physicians, especially are up against as well as organizations in defense of them fearing narcotics:

Patients LIE to physicians and psychiatric professionals, like all the time. They also self medicate with medications for reasons such as trying to control emotional and mental health pain and mental health issues with both prescription narcotics and illegal ones. I mean I get that Oxycodone is meant for severe pain of a broken back, it ain’t meant for a broken heart or busted psyche.

OR patients due to barriers don’t realize they actually have both a physiological and psychological dependence on medications that DO make them more of  a risk for abuse, addiction and that addiction can ABSOLUTELY lead to both intentional and accidental overdose to either prescription opiate or illegal drugs.

Sometimes with the aid of alcohol contributing to that, sometimes, not.

I’ve also had friends die due to accidental illegal drug overdoses, very innocently starting off with severe chronic pain or medical emergencies that lasted a long time (such as what I do in the weight loss surgery community when it comes to long term severe complications status post gastric bypass, that’s what the reference of the “other O epidemic”, because I write about bariatric surgery and “Obesity”, on occasion) that started with prescription opiate needs that did cause them to become addicted to IV meds that they made their opioid  tolerance so high, they did end up transferring to illegal drugs such as Heroin, when not in weight loss surgery crisis and found themselves in a different kind of crisis with addiction and ended up looking for a dealer instead of help and accidentally overdosed and that’s devastating and tragic.

So it’s NOT that I don’t have an idea of the fears and consequences by the both professional medical,mental health providers, government and society in general,  when thinking about the consequences that these medications potentially come with.

Because I’m definitely NOT discounting at all how serious and real, this all is.

And that these medications and the potential consequences of abuse and addiction, can be fatal to patients and devastating to both providers AND loved ones who are left behind.

Physical pain is also VERY subjective at times as far as what’s considered to be unbearable pain.

Not to mention, statistically as most physicians (including my own, who does all my medication management) will state,  that the longer a patient is on narcotics, the more their medications are increased, eventually they will hit a wall, so to speak, where their tolerance will become so high that not only increases their chances of potential of addiction, abuse as well as both accidental and intentional overdose, it also counteracts the effectiveness of opioid medications and they will NO longer work. PERIOD.

Also, unfortunately, sometimes patients have a sudden adverse reaction to a narcotic even with perfect compliance. Even if they are on an opiate the first time or a short time.

This actually happened to me with Fentanyl (duragesic patch). When dealing with hospitalizations due to my gastric bypass from 2003 to 2011 and certain procedures IV Fentanyl would make a procedure barely bearable. And I would get bounceback migraines from it, which I do from any IV narcotic, as well as hives.

I was put on my 1st trial of the Fentanyl patch, almost 7 years ago in Spring of 2010 and couldn’t keep the patch on and was put on oral pain meds which I had been off for almost 2 years, due to the time I was in the system (I did get narcs when hospitalized for ulcers while in the system from 8-2008 to 1/2010. It also bears mentioning I got OVER $17k in backpay in 2 installments between late 12/2010 and mid 1-2010) and when off narcotics with money did NOT go looking for a dealer prior to being able to get treated again by  my long term PCP.

2nd trial of Fentanyl in Summer of 2011? Not so lucky, as the first where just one patch fell off and it was too problematic to wait another 72 hours, so I had also gotten a special adhesive to keep the patch on for 2nd trial (I was also allergic to the adhesive OF the Fentanyl patch) and 26 hours without any abuse, meaning I put patch on appropriately and as directed, projectile vomited the whole entire 26 hours which I spent in my bathroom and then went through FIVE days of hellacious opiate withdrawal.

That came with the NOT so fun side effects of intractable shaking , vomiting, sweating and auditory and visual hallucinations, which I’m not prone to with my particular mental health disabilities, when going through serious opiate withdrawal.

Which I’d caution ANYONE from going through any kind of withdrawal without medical supervision like I did.

This ALSO occurred from a low amount of  of Fentanyl, 25 mcg q 72 (meaning 25 micrograms every 72 hours). Because I’ve had adverse reactions to quite a few other medications in all different therapy classes, I already knew that unless I was at home or in a hospital, NEVER to start a new medication, unless I’m at home.

So the above is not meant to be a “patient” insight portal, I’ll make that point, soon enough.

Most of my doctors would agree, including my Primary Care Physician, who’s been my doctor for almost like 18 years now, does ALL my medication management would agree, I’m not easy patient to treat. I don’t have anything resembling a predictable outcome when it comes to both medicine as a science AND medicine, well from a pharmacology perspective.

Both my bariatric surgeon and my PCP have seen me bizarrely be completely lucid to medications that knock out most of their other patients and be practically knocked out by IV Compazene, which is anti-emetic, but I’m a difficult patient to medicate, overall due to how bizarrely I metabolize meds.

And most people don’t nearly die from technically performed perfect gastric bypasses, pregnancy and childbirth and IUDs like I nearly have. Most people don’t usually get as many adverse side effects as I do from a lot of medications, in all different therapy classes and delivery systems.

And it doesn’t help in my case, that medicating me for one aspect of my medical issues can cause a trigger or side effect for another.

But while I can say as an activist that some of us may be harder to treat with our own unique physiological makeups, from a patient perspective, we ALL are unique in our own way and deserve an individual patient tailored approach to medicine.

That’s where the silly car analogy that I used, isn’t so silly when you think about it. The hoops that severe chronic pain patients have to jump through now, who aren’t addicted and are honest about their narcotic usage, are going to possibly lose the ONE AND ONLY treatment option that does HELP.

And while I believe and will write in seperate blog, about the need for more treatment options when it comes to everything, those of us who are in need of long term solutions to managing our pain, have tried EVERY other non narcotic or even non medication treatment out there and pain medications are a last resort, it’s a last resort that we are seriously in danger  of losing completely.

I wish there could be more of an honest dialogue by both patients and providers in the evaluation of how to treat severe chronic pain that isn’t caused by a terminal disease, long term.

And for those who suffer from addiction issues to be forthcoming with their providers, that take in account their physiological and psychological makeup, because it isn’t fair that just because while thousands of people do habitually abuse controlled substances or are at risk for transferring to illegal drugs, will ruin it for those of us who aren’t at risk and this is not only a MAJOR quality of life issue, this becomes a potential life or death situation, in those of us who aren’t medicated at all or are undermedicated for our own unique physiological makeup but would NEVER obtain medications illegally.

Now in my case, I have very temporarily when in crisis both medically and  mentally, TWICE now in my life abused narcotics. Once for 5 days proceeding and including my suicide attempt in 2008 and 7 years ago, for 3 days when in medical and mental health crisis.

And I know if I’d EVER do that again, I’d be cut off. But we are talking a period of 8 days of non compliance total in a span of almost THIRTEEN years, that I’ve been on them.

IF though I really believed as a medical activist that drastically regulating narcotics would save people’s lives, I’d be the first one to defend that. I had a horrible outcome with a gastric bypass, I don’t tell people not to have bariatric surgery. I had 2 pregnancies and 1 delivery that nearly killed my daughter and I, when she was born, I don’t tell women not to get pregnant or have children on the offchance their lives will be endangered if they have a baby, and I also don’t tell women not to have IUDs given after what  I went through with Mirena.

And even though I was in a serious car accident in my late teens, I don’t tell people not to get in a car or drive in one, even though I witness reckless behavior with drivers, EVERYTIME  I leave my home.

And if I’m going to be honest, I think Fentanyl IS an EVIL drug. And I couldn’t truthfully say that if I didn’t go sick from it, that even with compliance on it, that for how I reacted once I was able on my 2nd trial to keep a patch on for longer than an hour that if I could become physically addicted being compliant on such a small amount, it was nothing short of a blessing to me, that I got so sick to be spared an addiction of that nature.

More bizarrely, as physically sick that I became on it and with going through opiate withdrawal, I remember one thing that stands out.

It actually DID treat the pain that it was prescribed for me, it just wasn’t worth it, obviously, due to the nature of the horrific side effects.

But at the heart of the matter, all the stringent regulations and elimination of usage of opioids in pain management, could possibly do is actually kill more people. If people have a predisposition to addiction or even if they don’t, those who can’t  obtain  prescription opiate drugs legally will obtain them illegally.

And with these medications being eliminated will only create a market for more illegal medications to be manafactured and distributed.

OR you’ll have patients like me, who has to take an enormous NSAIDs to get the effect of the high strength but very controlled in doses of opioid medications, that I’m on, I’m feeling that I and others like me are  being sentenced to die as a result of that.

Because it’s not realistic that those of us who are narcotic compliant and have exhausted non opioid treatment therapies are just going to take NOTHING for severe chronic pain that already greatly limits our lives.

My heart hurts though for those, like myself who’ve lost cherished family members and friends due to opioid abuse.

But banning opioids or stringently regulating them, isn’t going to save lives until we address further the human nature of addiction, with a patient tailored approach to medicine which we are sorely lacking, is going to increase the danger of illegal drug abuse, addiction and fatality, it’s not going to reduce it, without a more through dialogue between patients and providers and government.

In the meantime, I make NO apologies for being both angry and terrified that I fought so hard to stay alive, to make this little crappy life of mine have some meaning, where I’m going to die a long drawn out physically even MORE  painful unnecessary death due to NSAID usage, when I’ve been 99.9% of the time medication compliant on opiates, which I’m still on, but not for much longer.

So this is going to make things a lot worse, not just for me, but millions of other people with severe chronic pain who aren’t terminal, until we can have an honest dialogue about human nature and addiction and have better treatment options for so many physical and mental health diseases, syndromes and issues that actually don’t cause more problems than they create.

I’m in NO way saying, that there shouldn’t be regulations in place, such as having systems in place for those who “doctor shop” or illegally obtain prescriptions and/or use multiple pharmacies to get scripts for abuse, addiction or to illegally sell on the black market. I’m also not saying that prescription opiates shouldn’t be a very last resort in treating severe chronic pain.

I am not adverse to being drug tested or that others should be  and I think it could help if we could talk about as a society, addiction and abuse should that happen, that patients don’t get penalized if they aren’t engaging in illegal behaviors or that present a danger to themselves or others, of being able to tell their physicians that.

But at the rate we’re going in society, thinking that eliminating prescription opiate usage as a last resort for some of us, making them INACCESSIBLE ,  is going to be present a bigger threat to our safety and lives, than the usage of these medications could ever be a threat to us.

Note: Respectful disagreement of opinion or in dialogue, encouraged. Disrespectful comments will not be published. Thanks….

Also note, this is where somewhat of an explanation of my perspective, is helpful to have a balanced dialogue. And why I couldn’t just write as an activist “Don’t eliminate prescription drugs for everyone because not everyone abuses” wouldn’t do anything for the cause,  other than being concise, BECAUSE, I freely admit, I have EVERYTHING to lose, especially my life, at this point…..

 

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