Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Understanding The Need For A Painkiller


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Once again, the media and Monday-morning Medical Quarterbacks are proclaiming that Prince, a pop music icon, died an addict.  This is so offensive to me.  There are so many different circumstances that need to be considered, and they all have to be considered.  And when all is said and done, you will understand that Prince physiologically did die as a result of an opioid drug, but he most certainly was not an addict.

First, I am going to state my qualifications to make this argument.  Like millions of others, I am a long term cancer survivor dealing with all kinds of late effects from cancer treatments that were meant to cure us of our cancer, only leave our bodies a wreck decades later.  And only now, is medicine finally catching up to us, realizing that we lived beyond the 5 year magic mark, long enough to develop late side effects from both chemotherapy drugs and radiation therapies.  I have personally met hundreds of other survivors in my situation, left to deal with pain associated with these late effects that medicine does not seem to be able to help us manage or better yet, cure.

Complicate this fact, that like me, many people’s thresholds for pain are so extreme, from dealing with decades of unrelieved pain, find themselves dealing level 2 controlled substances for relief, and that often is the best that can be had, is relief, not cure from their pain.

Let us understand, if you have a headache, you take a Tylenol, or something else with acetominphen in it.  Some take an extreme dose, and often this will do the trick.  But even a proven pain killer has its risks, especially liver complications.  But normally, this mode of treatment does provide some relief to this acute pain.

But then look at the average worker who has to deal with chronic pain.  The person who cannot afford to take time off from work, even if injured.  When the body is injured, it needs at least to rest, if rest is not possible, then medical intervention.  Just as with antibiotics however, your body builds an immunity to drugs once you continue on them.  And unless you are able to not do the tasks that are aggravating that pain, the pain will only continue and get worse.  That of course, means stronger means.  But pain meds can only do so much.  Enter opioids, which clearly help to relax the mind, as they are not meant to cure the pain.  But by taking these opioids, an employee, or a rock star can continue to function, to earn their living.  This does not make that person an addict.  That person is just trying to survive, earn their living, all the while doctors are unable to cure the patient of the pain, and the patient is unable to remove themselves from an aggravating factor of their pain level.

Eddie Van Halen, Steven Tyler, Prince, all suffered from needing pain relief.  All these artists were committed to their craft.  And that came at a price, that in order to continue to be successful, they needed to do what was keeping their pain levels out of control.  And the only way to deal with that was to either stop what they were doing, not an option to them, or take pain killers.  Only when their lives are out of control, is their pain actually addressed, and they realize that they cannot continue putting the physical stress on their bodies.  But this does not make them an addict.

As I mentioned, I used to work in an environment that constantly increased pain for me, that I already had.  But I could not afford to take off from work, and there is no cure for the radiation damage done to my body.  The only way that I could get through a day was to begin taking stronger pain killers, and as the tolerance for those pain killers grew, my pain continued to escalate, because along with the relief of the pain, I was still exposing my body to the issues that were increasing the pain and aggravating the issues I was dealing with.  Within four years, I was using some of the top opioid pain killers, all the while continuing to work.  But I was definitely not an addict.  I was doing what I had to do.  But physically, the abuse on my body, working with pain and injury, numbed by the opioids, only continued to make things worse.

Which is why, my employer had assisted in me finally giving my body the break that my doctors had been begging me to do, and enter the disability process.  Removing myself from the physical demands that had been escalating my progressive issues, allowed me to finally deal with my pain without relying on opioid painkillers.

It makes no sense to me, that our society will not accept medical marijuana which would accomplish the same thing as an opioid pain killer without the addiction.  But without you having the personal experience dealing with extreme pain levels that many of us go through on a daily basis, with no opportunity for cure or relief, you have no right to judge.

But having gone through open heart surgery, having my breast bone cracked open, kidney stones, and a raging septic case of pneumonia causing unimaginable pain, opioid pain relief was all that got me through those incidents.

It is a shame that Prince, a musical genius, was not able to give himself the opportunity to try to heal from his pain.  He may have died from the medication, but it is not fair to call it an overdose, as overdose implies an intentional act.  Prince, I believe was only trying to continue the only thing that he knew how to do, perform and produce, and that meant no rest.  And the only way he could continue to do so, was with the help of prescription painkillers, but that did not make him an addict.

But if medicine and society really wants to put an end to events like the death of Prince, then medicine and society have to first, stop putting pressure on people to continue to work when they are legitimately hurt.  And medicine has to learn to do more than just medicate pain, it has to cure it.  And until medicine and our society develop empathy for those of us who deal with chronic pain, and most likely for the rest of our lives, I speak for everyone, you have no right to judge about how we live a quality life as best as we can.

Sometimes, The Best Advocate Is Yourself


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Advocate ad as defined in the image, “one who pleads the cause of another.”

In my life, I have taken on many advocacy roles, and the list almost grows daily.  From health, I advocate for patients with their care, and their rights in the work place and in the rest of the world.  This started around the time that I was diagnosed with Hodgkin’s Lymphoma, and the first hurdle that I had to jump in my care.  I considered it unacceptable, and knew that if it was happening to me, it was happening to others.  Buy my advocacy in health did not stop with the world of cancer, but has expanded to cardiac, long term survivors of cancer, geriatric care, and simply, the right to receive medical care when it is needed.

With having two daughters adopted from China, I became an advocate for families seeking and dealing with adoption issues, not just internationally, but domestically as well.  Because of having children, I took an interest in public education and fighting to make sure my daughters got the best education possible and supporting those trusted to educate my daughters.  Which of course led to my first and only political run, for local office, school board.  And of course I began paying more attention to politics on the larger level.  But to be honest, the lessons I learned at the local level leave me feeling hopeless at the higher levels.

Getting back to children, well, not just children, I have always been an advocate fighting bullying in any environment.  Sadly, society still does not recognize by ignoring the bullying in schools, those bullies grow up to be adult bullies.  There are plenty of programs to deal with this, but unless they are used or enforced, they are paper tigers.

And then there is Parental Alienation.  This is the blatant act of causing mental and emotional harm to a child, by interfering with the relationship between a child and another parent, usually through divorce.  Talking negatively in front of a child or even as “matter of fact”, causing the child to miss opportunities to spend time with a parent, manipulating the child to develop a negative concept of the other parent, are just some of the examples of Parental Alienation.  And I will not beat around the bush with this, PA is child abuse.  Children have the right to love their parents.

But there is more to being an advocate than just having a cause to fight for.  There is more than just defending someone who just does not know where to start to find the answers to start their fight.  Perhaps, they just do not have the strength to express their needs.  Sometimes we have to be that voice.  And in many cases, it is as easy as just showing someone “where” to begin, or even guide them along their course.

There are also times, when even the slightest effort, without realizing it, you can become an advocate.  Just being there for someone, as an “ear”, makes you an advocate because you are showing someone, who may feel alone, that you care.  And that act alone makes more of a difference than doing nothing at all.

No matter the cause I advocate for, it has made me who I am.  And it helps me to deal with the many things that I face.  I have no quit in me when I know that something, or someone is completely wrong.  And I have paid a price over the years with employers, friends, and family because of my decision not to pick battles.  Even the smallest issue to me, if you let enough of them go, it leads to a big issue.  And I have learned, if you are dealing with the smaller issues alone, when you face the bigger ones, you will still be alone, and that fight is even more difficult, because the other side is not alone.

You will never be taken more serious, when you, yourself, advocate for yourself.  After all, you know more about your particular situation than anyone else.  Sure, the help of another advocate is great, but your own words will be the loudest and get your heard.

Addiction, Mistreated, or Misdiagnosed?


We were stunned by the death of music legend Michael Jackson.  And recently shocked again, but the death of another musical icon, Prince.  The common link between their deaths, pointed at the use of prescription drugs.  I will not be one to throw the term “abuse” or “addiction” as many other choose to do.

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Their deaths were much more complicated than just being given sleep medication and pain medication.  I know this personally, not because I knew either artist, but rather because like so many other patients who deal with long term, permanent, or progressive health issues, I have personal knowledge of what it is like to have to live with pain, discomfort, and frustration from either the lack of care, or the inability to get the care necessary to improve the quality of life.

I am not naïve.  As a caregiver, I have witnessed many times, patients simply throwing out symptoms, in order to be able to get prescription drugs in the form of painkillers or sleep aids.  For being one of the most advanced countries in the world however, our medical society does not do enough to confirm or deny when someone else’s issues are real, or manipulative.  It is not necessarily medicine’s fault either.  Some are very good actors and actresses.  Some are just a pain in the ass.  I have watched people go from one end of a spectrum of diagnosis straight through to another, still come up with nothing solid, but have been given more than a dozen prescriptions to try and deal with the increasing list of symptoms.

Then you take someone like a long term cancer survivor subjected to 4 times the lifetime maximum exposure of radiation, or chemotherapy so toxic that in one of its forms, one drug actually used to kill thousands of people in a middle East country by their dictator leader.  There are many people in this situation, including me.  I am not known as a complainer for my body’s ills, so when I actually do voice a discomfort, I get attention.  So, when I was diagnosed with a “widowmaker” blockage with my heart at the age of 42, it was not something that doctors had been looking for or expecting.  And to be honest, if not for the tenacity of my primary care doctor, any other doctor might just have missed this.

Once it was discovered that I was dealing with late effects, then it became much more clearer what I was feeling with my body, and how my body often reacted.  Before then, it made no sense.  But as things were diagnosed, more than a dozen issues, treatment and management could begin.  Of course, that was only going to be as effective as the lifestyle that allowed it to work.

Blue collar my whole life, I would show up at work “on life support” if I could.  Much to my doctor’s chagrin, I was very tough on my body, not in a dietary or exercise sense, but stress, emotional and physical.  I worked very long hours, and carried very heavy loads, even considered too strenuous for someone without my similar issues.  Several of my doctors hinted that perhaps it was time to consider “retirement” just to give my body a break.  In fact, one of my doctors looked like he was going to explode when I made the comment that “I deserved to be in the pain and discomfort because that was my price for having been cured of my cancer.”

This is how it started for me.  It started with moderate pain medicine, which all that did was allow me to not feel as much pain, ignoring my limitations.  This resulted in more pain, which of course resulted in stronger prescriptions, and the cycle just continued.  Then you add in the insomnia from the pain.  Yep, add in sleep aids.  And those needed to be increased because the stress and pain continued to increase.

Just as antibiotics become useless as we build up tolerance, so do pain meds and sleep aids.  Again, without the lifestyle change, this becomes a major issue.  It is not fair to just simply label someone as an addict.

We are a “bust your ass” society when it comes to money and possessions.  We are driven to do whatever we can to get everything we want.  And that comes at a price.

I do not know what caused Michael Jackson to require the amount of sedative he used to sleep.  I am sure it had to be stress and anxiety related.  But again, without any change in lifestyle, those meds were going to be necessary for him, and as they became ineffective, newer and stronger medicines were going to be needed.  Sadly, he lost his life.

And for Prince, if you have ever seen him perform, if he was dealing with pain, which again, seeing him perform, you can see how much his career could easily have taken a toll on him, pain meds can only do so much without changing the lifestyle.  Which means, as your tolerance builds, you need stronger meds.

No, I do not believe that either death was related to addiction.  Yes, the meds have their addictive qualities, but if you do not change the lifestyle that causes these types of issues, they will only continue to exist and need to be dealt with.

My health issues will never go away.  They are progressive.  But as my doctors have acknowledged, we can at least slow the process down, and improve quality of life.  The rest is up to me.

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