Painkillers, iPhones and Police (A Day in the Life)

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I don’t like to go out much during the winter. I hate snow, I hate cold, and as my family and friends all know, I’m not particularly fond of wearing clothes. People will call before they come over to give me a head’s up.  Or, if they do pop in, they know to yell “are you decent?” as they enter. My ex-wife and I once visited a nude resort, but that’s a story for another time. Further ratcheting up my disdain for outside ventures, was that my trusty Toyota had recently died, and I was using a Volkswagen Bug that my parents had loaned me. It took my father days to install the hand controls. It was difficult, and possibly dangerous, for me to attempt getting in and out of this car. The wheelchair-to-car (and car-to-wheelchair) transfer was not easy.  Any snow or ice makes it far worse, as the chair can slide away. Brakes don’t work on ice.  It had snowed the day before so I knew it would be some work just to get TO the car.  Then more shoveling and work to get the car cleared off; and then the dangerous transfer into the car.

Painkillers

Despite all of this  I needed to get my pain prescription refilled.  When you are dependent upon an opiate, you watch carefully as the pills dwindle.  Since these pain medications (drugs) are so heavily regulated and monitored, there is an elaborate process just to get a prescription filled.

The National Institute on Drug Abuse (NIDA) had provided some helpful infographics to make the point. poppingpills-nida_01Addicts have “doctor shopped” until they find someone willing to write a script.  Doctors are less willing to write these scripts, so addicts will visit emergency rooms trying to get doctors to write a script.  Doctors are now trained to recognize “drug seeking behaviors” and the scenarios that addicts devise to get a script written.  Hospitals have developed protocols to make sure that not just patients, but increasingly doctors and nurses, aren’t able to obtain and abuse these drugs.  There are horror stories of abuse, overdose and death.  Nurses were discovered eating Fentanyl patches rather than discarding them, after they had been affixed to a patient’s body for 3 days.  Now you must have two nurses present just to discard the patches.  There’s more information on the National Institute for Health’s NIDA link here.  Unfortunately, the addicts that are driving the need for the increase in regulation effect patients that are not addicted, but dependent upon the same medications.   That is an important distinction for people with chronic pain issues, that appropriately take medication under their doctor’s supervision.  What this means for me?  I have to jump through all the hoops put in place to prevent addicts from abusing the system.

poppingpills-nida_03My doctor’s office requests that you call 5 business days in advance, so that they can make sure they have time to check against the state database to see if they are cleared to write a script for me.  The state database ensures that I haven’t been out visiting a bunch of other doctors, and getting prescriptions filled at different pharmacies.  If it’s been enough days since they’ve issued a prescription,  the office will print the script for the doc to sign.  My physician works in one of the myriad offices across New York State that have either not yet spent the thousands of dollars to upgrade their computer system, or are awaiting the installation and connection to the system.  The offices that have completed the process are able to fax or email the scripts for controlled substances to the pharmacies already on the network.  Until connected, I can either go in and pick up the script; or I can have it mailed to my pharmacy.  I’ve had some delays with the mail in the past, so I’m no longer willing to risk relying on the US Postal Service.  I say “risk” for a reason.  If I don’t have access to this medication I will experience withdrawal symptoms.  These are bad for anyone, but very bad for me, as I’ve described in a earlier post.  Yes, I can die.  That’s why I put I “needed” to get my pain prescription refilled. Continue reading “Painkillers, iPhones and Police (A Day in the Life)”

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When I Died I Saw…

the_grim_reaper_by_irondoomdesignNothing.  Sorry.  But I changed.  I rejected the religion of my parents years before.  I wasn’t an atheist because life had to begin somewhere, and there were questions that couldn’t be answered.  After the accident I had no memories of being pulled into tunnels, or being greeted by previously passed persons.  However I no longer feared death.  I KNEW there was something more.  This was the beginning of my spiritual quest.  Dying made me a seeker.  It might have even softened my edges. Different story for another time.

My Deaths grim reaper

  1. Car accident.  As the story goes, I was unable to breathe due to a blocked passage (my kryptonite is vomit so I dance around visuals).  There was a guy with a red beard standing nearby praying.  I have a visual in my head that he’s standing there reading out of a bible, but I have no real memory of the accident.  Next a nurse appears from somewhere and clears my airway with a pen somehow.  This is the myth.  The other person there won’t/can’t talk about it.  He sued me & would later be my best man.  I’m left paralyzed from the chest down but that’s not very important till you get to #7 below.
  2. During a major surgery in 1995 (Bladder replacement; known as The Indiana Procedure) my family was told that “they lost me” for a while, but revived me easily, and the surgery was a success.
  3. October 2006 I had been severely ill for a few weeks. I was unable to eat much of anything other than ginger ale and ginger Altoids.  I was tanking and I knew it.  I had changed my ringtone to “Knocking on Heaven’s Door.” 911 called.  I was feeling better during the ambulance ride and wondering whether calling 911 was unwarranted.  I was reviewing my current symptoms and medical history with an intake nurse.  He was trying to get me moved to a critical area, but kept getting “no” as an answer.  My vitals worsened and still he advocated to no avail.  Cardiac Arrest… as they finally wheeled me to the critical area, I managed to thank my nurse for trying tell him that no matter what happened, it wasn’t his fault.
  4. When I was revived, it was like I was simply being woken up.  Now, in the critical area, they began asking me all the questions that I had just answered.  No one thought it was a good idea to go grab the nurse that had all the information.  Instead they tried to extract it from the newly revived dead guy.  It was all very hectic, as my vitals were not bouncing back, and there seemed a great deal of urgency to get all of my nearly 25 years worth of medical history conveyed in 30 seconds.  I began attempting to meditate at this point, as it was becoming difficult to breathe.  20-some years of meditation was helpful in remaining calm, as this frenzy was playing out around me.  With a weird detachment I monitored my breathing, and was in the process of suggesting they might get this info from my first nurse, when I rudely interrupted myself with my second Cardiac Arrest.
  5. The medical records showed that I was given an epinephrine (epi) shot to bring me around again.  Again it was just like I had dozed off.  Only I couldn’t breathe very well.  I immediately went to my zen breathing, while trying to tell them to stop fucking asking ME questions and go get my first fucking nurse, right fucking now.  Apparently now that I had died on them twice, they were even more desperate for me to convey all the information that my first nurse (30 feet away) had.  My heart was not operating well enough to pump my lungs so they were filling with fluid.  So… this time I died of a Pulmonary Arrest.  When they brought me back they started with the questions again.  Fascinating right?  They were trying to move an x-ray machine to get a picture of my lungs when I realized I was about to drown again, and said “intubate me.”  One nurse wanted to wait and get the x-ray of my lungs.  Thankfully the other pushed him out of the way, and told him that if a patient actually requests intubation, you just do it.  Because no one, I repeat, no one, requests intubation.
  6. When next I awoke I was in the ICU, and  pleased to find I was not on a ventilator.  Apparently I went ahead and died once more, (at this point I’m just running the number up to compete with cats right?) but they caught it early with the monitors and everything, and just shot the epi into my IV.  I had evidently gained a reputation for dying when people asked me medical questions, so that had ceased.  They were debating whether I was septic (full body infection was how the described it) or had pneumonia, or both.  Or maybe something else completely.  They were going to get me stabilized and then remove my medications so they could get a baseline and figure out what was going on with me.  Which leads to:
  7. I saved the best for last.  (at the time of this writing.  There will be at least one more – I realize this) They decide I’m stable enough to be moved to “the floor.”  In the ICU the nurse:patient ratio is 1:1 or 1:2.  In contrast, the floor has a ratio of 1:4, 1:5 or 1:6 depending upon the severity of the cases.  I like to think of the ICU as this very lush oasis, where all the people and resources are all in the same place.  The floor is more like a desert.  That night I’m not feeling great, but I send my family home.  They’re exhausted from running back and forth.  All of them offer, and the girlfriend pretty much insists that someone will stay.  Nah, what could go wrong?  At 4 in the morning I push my nurses button, and inform the friendly voice that I don’t feel well, and maybe someone should get in here right away.  After about 10 minutes the nurse arrives, and I tell her that I feel like I did in the emergency room before I “tanked.”  I didn’t go over the whole “died 4 times in the last few days” thing because she had to know that right?  She checked the line they had inserted into my arm to make sure that my IV was okay, checked my vitals, and told me to “hang in there,” because the docs should be arriving to do their rounds in about an hour.  I’m an awesome advocate for myself.  I take shit from no one, and generally can get my needs met one way or another.  But I had no solid argument other than feeling “uh oh.”  So she left.

Continue reading “When I Died I Saw…”

You Are What You Eat

banana-shrub-301663_1280In 2015 I made changes.  I read some books that scared the shit out of me and woke me up.  I read Wheat Belly: Lose the Wheat, Lose the Weight, and Find Your Path Back to Health, and my eyes opened to just how bad my diet was.  That book also showed just how little we as individuals should rely upon and trust the information put out by the government.


Note: Over the past five years or so I have gradually extricated myself from involvement in politics.  When I was laying in the ICU watching Meet the Press I set off my monitors.  The doctor came in and ordered the TV shut off.  I almost shouted at the doctor, and might have started lecturing about how important it was to be informed about politics, when I was struck with the absurdity of telling the person charged with keeping me alive what was important.  I had also seen people on Facebook lose there minds in the shouting and echo-chamber madness that seems to become a person’s whole life, or how they become defined.  I’ll glance at a blog now and again, but I monitor myself very carefully to ensure I don’t get engaged or go down a rabbit hole that in the end is only frustrating.  I’m sure that  I’ll address this at another time.


Having given that caveat I’m still compelled to say how disturbed I am with the misinformation that our government puts out, the lack of controls on what reaches our shelves as consumers, and the horrific influence that corporations have upon both of those areas.  Buyer BEWARE is a vast understatement when it comes to the food and medicines you put in your body.

When I lose weight it’s in all the areas where I can’t afford a decrease (my gaunt face, or my needed ass padding) while I have a belly that I can’t exercise away.  I started looking at books (The Bulletproof Diet: Lose up to a Pound a Day, Reclaim Energy and Focus, Upgrade Your Life and The 4-Hour Workweek: Escape 9-5, Live Anywhere, and Join the New Rich), websites and listening to podcasts on a wide variety of topics.  I’ve changed to a gluten free diet and begun paying a great deal of attention to food sensitivities.  That diet is my own form of a modified Atkin’s diet  and a ketogenic diet.  I have butter in my coffee every morning.  How_To_Make_Bulletproof_Coffee_3b4288cd-a4ff-43f2-bff7-3a34ba242d4c_grandeI do a four and a half day fast every other month.   I’ll be talking about many of these topics in detail in upcoming posts.  Leave me a comment if any of these areas have you curious and I will prioritize accordingly.  The bottom line for me was that by the end of 2015 I had lost much (unofficially 40 pounds or more) of my belly, had more energy and felt better than I had in years.

My learning about all of this is still in the infant stage.  I listen to podcasts and read blogs that you can see off to the right in my links/blogroll list.  There is an unbelievable amount of information out there, and if you have a specific condition or syndrome I encourage you to investigate how modifying your diet might help you decrease or cope with symptoms.  I’m going to illustrate this by adding a TEDx talk you should see in its entirety.  I’ll have much more to say after you watch:

You may or may not have been as disturbed as I was by the annoying red box that kept popping up while I was watching the story.  I’ve heard Dr. Whals on Dave Asprey’s podcast and loved the information that was presented.  I looked on the YouTube site and read some of the comments.  Did TedX sell out?  Dr Wahls feels strongly about that question and answers it here.  I encourage you to read the response and decide for yourself.  I have extreme respect for the TED series, but if they are going to allow sponsors like Monsanto or Big Pharma influence and sensor their content they become another useless mouthpiece for the propaganda machines that value the dollar and are invested in keeping people sick.

Perhaps you’re thinking that I’m exaggerating.  If you’ve made it this far then please click and read the following link and then feel free to comment on how I’ve lost it.

Source: Top Foods to Avoid Until 2018 (And Maybe Forever)

My Twisted Angel

This is a story from long ago.  A story of youth but more.  A hurt from forever ago.  I loved someone in my teenage way for a long time.  Going back in time like this can be painful because I was not necessarily a great person back then.  I had managed to go from a shy person with girls to somewhat of a dog.  So I’ll get that apology out of the way early on.  What was ego enhancing back then as a teenage guy fed a fire and a reputation that wasn’t bad to have back then.  What I was proud to be back then I’m not proud of now.  Part of looking back for me is taking a more honest accounting of was really going on with me; and the consequences to myself and others.  I don’t want to whitewash any of it because the lessons for me that can be extracted (and therefore not repeated) can be used by others to avoid making them in the first place.  Having said that…. Continue reading “My Twisted Angel”

Pain Part Three (recent pain profile)

Recent Pain Profile (Submitted to Official Electronic Medical Record)

In May 2014, I conferred with doctor Stevens regarding my chronic side pain and my prescriptions due to a change in what I’ll call my “pain profile.”

For a couple years now my pain profile has been that I have a chronic pain in my left side that is always present and when controlled with medications is a tolerable 4-5 / 10 on a pain scale. Additionally there are periods of intense pain that I refer to as 200 on a scale of 1-10. Continue reading “Pain Part Three (recent pain profile)”

Skin Prison (A Disability Post)

Skin Prison

A brief retelling of my history.  I broke my neck in 1982.  Five days before I turned 19.  The result was quadriplegia.. paralysis in 4 limbs.  Although the only effect in my left arm is the tiniest decrease in sensation, there is no such thing as a triplegia, so a quad I am.  As far as this story goes, that’s not a big deal.  I’ve gone so far as to tell people the accident and resulting disability are a GOOD thing, because the way I lived my life back then I surely would have ended up dead sooner or later by pushing the edge… the accident slowed me down.   As it turns out now, that’s probably not true.  Driving like a maniac, jumping off cliffs and diving into shallow pools with trees floating in them is nothing compared to the shit people do today.  Extreme sports, jumping out of helicopters and flying next to cliffs in a suit designed to make you soar like a flying squirrel makes me look like a massive pussy!  I wish I had the opportunity to do that stuff!

Describing what life has been like over the last thirty years is a rather overwhelming task and I’m struggling to find a way to break it up into manageable pieces.  Please excuse the missteps I’m bound to make in the process.

Today my purpose is to explain how my world has shrunken down to a bed in a small room in a small house on a small street in Schenectady.  “Skin Prison” refers to the body in which I reside.  The vehicle I have improperly maintained over the years. Continue reading “Skin Prison (A Disability Post)”

Medical History, Part One

Medical History (Part I… Part II is Skin Prison above)

There are a few reasons for posting this where anyone can see it.  The easiest reason is that if I’m dying (again) in an ambulance or hospital Emergency Department and need the people charged with keeping me alive to know everything I only have to spit out a web address.

Another is:  since I’m writing about my experiences this will give some kind of glimpse into walking a mile in my shoes (hahahaha)

Another is:  this is a great time to be alive.  To stay alive.  To be thankful for till being alive to love and make stupid mistakes and maybe learn from them.  I can’t believe I woke up this morning.

This is not pretty and there are people that should not click read more.  I’ve left out more than I’ve put in and most of the bullets have such bigger stories.  I’ll get to as many as I can, but only if they make me laugh.

Continue reading “Medical History, Part One”

Pain, Part One

Growing up I had a very high pain tolerance.  I could just ignore most pain if it was intense as long as I knew it would be short lived.  Chronic pain is another story.  Knee surgery and a broken collarbone were not fun for me by any stretch of the imagination.  Being an idiot I used knowledge of this fact to “impress” people.  If there was a fight brewing someplace it was not a big deal for me to smash my fist into a brick wall to let everyone know what kind of fun was about to ensue.  In my head this was also a way (along with head butting stop signs) to impress the girls.  Maybe smashing my head against stop signs helped lead to the foolish notion that any of this would impress a girl.  Headbutting stop signs could explain more and more of my thoughts and behaviors now that I ponder it, but I digress. I became familiar with true pain after I broke my neck. Continue reading “Pain, Part One”