Sunday, March 18, 2012

I would be dead without opioids

Opioids aren't the devil: you are. By "you", I mean quite literally you, me, them, and -- most especially -- all other human beings.

Opiates are just innocent alkaloids that come from a poppy flower. The alkaloid isn't the devil: you are, because it's what humans do with it that's the problem. Some take too many, some shoot it into their veins, but the absolutely worst thing humans do to opioids is you demonize them. You're the puppet master, who was in control all along, yet you're blaming your puppet.

(That makes you a pretty stupid puppet master, doesn't it?) 

And there, in a nutshell, is the unhealthy relationship the human species has with the opiate alkloid.

My Story

I have had lupus my whole life. Even when I was three, I could barely get up after having sat on the floor playing Barbies. And, when I did, my knees would be covered in bruises.

But the techniques for diagnosing lupus weren't that good back then. I was tested, and it came back negative. Life went on.

Until I was 12 and it came to a screeching halt.

When I was 12, my appendix died inside me. I lived in that excruciating pain for six months before anyone would do anything. The only doctor wacky enough to open me up and try to see what was causing the problem had no idea what he was doing, didn't suture me up on the inside, and I developed peritonitis.

Peritonitis is often described by those in the know as being "ten times more painful than child birth". Your insides stab where you are leaking God knows what, but they're also bloating, because your kidneys have failed. Bloating on that scale, is quite painful. After all, your parents can't hold your hand, because when they do, your skin explodes with the fluids of kidney failure. Having 24 IVs blow -- some in places IVs should never have to be -- is painful. In a way, septic shock got me through it. It dulled the pain enough to where I could get done what I needed to get done to survive.

I wasn't on a single painkiller -- not even acetaminophen (Tylenol, Paracetamol) -- during my ordeal with peritonitis. Believe me when I say, I wouldn't wish that on my worst enemies. (It wouldn't be a fair fight.)

It was only AFTER appendicitis, peritonitis, and their corrective surgeries did I encounter opioids. At first, it was morphine. (After all, having an 8 inch gaping wound in your abdomen is painful. It needs the big guns.) But then it was slowly dropped down to lesser values of related medicines, until I was sent home my still wide-open abdomen and some codeine.

I took the codeine for a few months, like I was supposed to. And that's when the catalyst happened: I came to a point where the medicine just quit working -- I was in the same amount of pain whether I took it or not. (Now, of course, I know that that is called 'tolerance'.) A lot of people just up their dosage when opioids do that -- and they will. But I did something less dumb: I quit taking the medicine altogether. (This is important, so remember this part for later.)

And I never had opioids again. Because after I was 12, my lupus -- which I still didn't know I had -- went into remission for several years.

I started feeling bad again in college. I was always so tired, I'd just fall asleep wherever I happened to be sitting after I'd get home. (Sometimes, I would even sleep sitting up straight, which should've been a clue.) And I ached. The sleeping was partly to escape the aching. However, I chalked both up to having to walk several miles a day (including a minimum of eight flights of stairs) while weighing only 100 lbs and carrying a heavy messenger bag. I even blamed all the aching in my hands on the note-taking during lectures.

But, in my second semester, things got weird. My first strange problem was that I started feeling tremendous chest pain every day. I thought I was too young to have a heart attack, but it finally got so bad where I became convinced I was. Went to the ER and it turned out I had pancreatitis. I had to be on an IV overnight and could only eat ice cream for about two weeks.

Then, a couple of months later, I wake up with cheeks swollen like a chipmunk and they burned when I would chew. I had no clue what was wrong with me, but my mother had seen it before: I had mumps. And who, in America, has mumps nowadays? Especially when they were vaccinated specifically against them? My doc at the time was so young, he'd never seen such a thing as mumps. It astounded him. (I astound a lot of doctors.)

So, I go on for the next two years with weird symptoms and things -- just weird stuff that shouldn't happen. And the aching grows worse, and worse. By last year, I couldn't complete my classes. I received a withdrawal fail.

My Experience with Chronic Pain and Its Effects

By the age of 21, I was diagnosed with lupus. (Already had a fibromyalgia diagnosis from when I was 18; it's a fact the two conditions are often friends.)

Not being able to do my schoolwork due to extreme aching and fatigue was just the beginning.

When I say I ached, I mean I hurt. It was so bad, I couldn't grip a stick of charcoal. It was so bad, I could barely walk; when I walked, I would hobble and the only place I would hobble to was the bathroom. My life -- my entire world -- became centered around my chair in the livingroom where I wasted away.

I spent my days writhing in pain, literally squirming and crying because I hurt so bad. I couldn't think straight. I was always on edge because the pain was always there. I shook. All the time. There was no relief. Sometimes, I would stay up for three days at a time because I hurt so bad, I couldn't sleep. I would literally stay awake until I couldn't anymore. That's the only time I would sleep.

One time, I only had three hours of sleep in one week. I couldn't take it any more. I hadn't eaten since who knew when. I went to the ER and told them, "I hurt really bad and the NSAIDs my rheumatologist gave me aren't making a dent in it." And I told them how I hadn't been sleeping, how I couldn't fathom food, how I lived my life in that stupid chair, which had become my prison.

This was a doctor who knew me. He knew I wasn't a wimp. He knew I went through hell when I was twelve. And he told me, honestly, that the ER can't help for chronic pain -- a certified chronic pain clinic can.

And that's what I found. I looked up certified chronic pain clinics in my state and found one an hour away, and got an appointment.

The Toll of Chronic Pain on my Body

At the pain clinic, my blood pressure was 163/120; my pulse was 160. That was from the sheer amount of pain. It can be sustained briefly by a young person, like myself, but it's not healthy or safe.

That was the toll severe chronic pain put on my body. The psychological toll was that it exacerbated my Post-Traumatic Stress Disorder, which I got as a souvenir when I was 12.

When I first walked into the pain clinic, my whole world was small, painful, a living hell. Every day was a nightmare beyond what any healthy person will ever be able to understand. I was in agony and there seemed to be no escape. I literally saw my life being muffled out by the pain. To a great extent, it had been. I was all but dead already.

How Opioids Saved My Life

I was given a low dose of hydrocodone to treat my pain. It took the edge off enough where there was a complete drop in blood pressure and heart rate. (I was almost normal that very week.)

After about two weeks, I got where I could walk around my house. Do you know what a blessing it is to walk? Even when it hurts, walking is one of the greatest things there ever was. And I never knew that until I was 12 and, for the first time, I couldn't. For the second time in my life, I could walk again. It is the best feeling. It was physical salvation from the hell I was living.

That physical salvation led to a mental one. What was misdiagnosed as "major depression" almost immediately disappeared with opioid treatment. Without the constant searing pain in my joints, I could think clearly and see hope. Before, I was helpless, which naturally leads to hopelessness. Pain treatment helped me; help gave me hope.

A year later, I am literally reclaiming my life. My world doesn't consist of a chair in my living room. My world is your world. Be afraid. I started riding the stationary bike, doing aerobics, and -- most importantly -- dancing. My resting heart rate is getting more and more normal. I am living proof that, with help, one can reclaim their health.

And my life just keeps getting better.

Now, I sing every day; before my surgery, I had an officially documented 5 octave singing range. I was a very good singer. I struggled for years to get that back; I'm still working on it. Now, after getting pain treatment, and being able to sing every day again, I'm finally back at 4 octaves. I know I'll reach my goal and maybe beyond now, because now I have the physical strength to do so.

Now, I can play with and interact with my youngest sister and my nephew (both four). Before, I was just someone on the sidelines of their lives, always too sick and in pain to join in. Now, I can be a part of their lives. And that is the greatest gift.

For a long time, I subsisted on forcing myself to eat as much as I could; in pain, that was only about 800 calories a day. More than a concentration camp victim, but definitely below the starvation line. It was the perfect amount of calories to tell my body to hold onto as much weight as I can.

But I've lost 30lbs since my peak weight. My face looks like my face again. Do you know how wonderful it is to look in the mirror and actually see you?

Why I Wrote This

There are those out there who think people like me should be denied opioids. They think this because they're uneducated. They think this because they hear about the dangers of "hillbilly heroin" and high schoolers breaking into their parents' medicine cabinets.

What they don't hear is all the good opioids do when they are used correctly under medical supervision. And that's the story everyone needs to hear.

To make things worse, lawmakers are having hearings about the subject of painkillers -- when, where, how they should be allowed, etc -- without the testimonies of pain patients and chronic pain specialists. 

Read more about the ignorance of these hearings: HERE.

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