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.

Why having lupus is as attractive as voluntarily sticking your hand in a meat grinder

What is lupus?

Lupus is an autoimmune disorder wherein your immune system goes batshit crazy and attacks all your healthy tissue at random, whenever it feels like it. Your immune system has declared war; you are the enemy.

(I took this pic in 2009, before my diagnosis, wondering what the weird rash on my face was. Now I know.)

Why it sucks

Think of your immune system like pawns on a chessboard. A lot of people take them for granted, but they're actually very valuable pieces. They're the main line of defense. And, normally, they can't attack their own sovereigns. But lupus changes the rules. When you have lupus, your pawns decide they CAN attack their sovereigns. They leave the enemy pieces (foreign viruses and bacteria) alone and go after YOU until all you're left with is your king hopping around the board by himself hoping to God he doesn't end up in check. 

That and the fact that you could die at any random time from any number of conditions a person your age simply shouldn't have. I once read that being a lupie (that's what we call ourselves), my chances of having a stroke are six times that of my peers. At the time I read that, I was smoking. Reading it made me smoke more as a faulty coping mechanism. That's hard news to digest. 

What it feels like emotionally

It feels like your body has it out for you. It feels like your body wants to destroy you (and it kinda does). So, any time something ELSE goes wrong (like you get the flu) or you get a complication (whether it be a mild rash or something serious like kidney failure) that's just like adding insult to injury. 

And I used to be this being of the sun. I spent my whole days outside; my skin was like copper, my hair was bronze and gold. I ran wild and free and never wanted to go inside. I was so damn alive and I didn't even know it. 

But now, I can't be in the sun anymore. I live life like a vampire, always in the darkness, in the shadows, never seeing the sun. Now, I'm so white I glow (never would've guessed THAT was possible), my hair has gone dark, and I'm anemic. If I step into the sun, my skin will burn and blister because of lupus. Before lupus became a problem, I literally never had a sunburn. Never. 

And knowing you could die young...that is the worst. Because I almost did die young. When I was 12. My appendix died inside of me and fell off. I developed peritonitis, kidney failure, septic shock, blood poisoning, and the beginnings of respiratory failure. Just one of those problems can kill a person. Septic shock in particular has a low survival rate. To have them all at once and live is almost unheard of. I'm a fucking walking miracle. And I'll never be the same again. 

You know that song "If I Die Young" by The Band Perry? That line in there about the "sharp knife of a short life" -- I don't think I've ever heard it said better. There is no sharper knife than that. 

And it doesn't matter what religion you are or if you're religious at all. You are meant to be here. You're meant to do what you want to in this life. And the threat of it all being cut short -- like a constant gun to your head -- is the worst feeling in the world. 

What it feels like physically

I was told by the doctors and nurses when I was twelve that my near-death experience was the most painful thing I would ever feel in my life. (They were right.) They also said my experience was one of the most painful things that could ever happen to a human being. My experience was literal torture. (After all, acute kidney failure is drowning in your own body. You can't breathe. You can't think.) And I had no painkillers, no nausea meds -- NOTHING. I was literally tortured by butchers until my parents found surgeons who would listen, who had the education and skills to recognize what was wrong with me. I actually was saved by the best pediatric surgical team in the world. Otherwise, I'd be dead. 

On an every day level, it feels like your bones are breaking. Your stomach hurts. You puke way too much. And you're generally treated by doctors who barely understand what's wrong with you. (Lupus is very mysterious. They have no idea what even causes it.) 

And as much as I've gone through. I'm the lucky one. Every day is painful, but I had only one truly bad and dangerous spell. (At least, that I know of.) 

Out there, there are kids younger than me dying of heart attacks and kidney failure because of a disease most people are unaware of. Out there, there are mothers who are literally physically crippled, yet pull themselves together to take care of their children. Out there, a million people aren't getting proper treatment because we just don't know enough about lupus to cure it. 

Awareness

Toni Braxton, Lady Gaga, and Felicia Day are a few people who have an audience, who've used it to raise lupus awareness. Even when they mention it in passing, celebrities raise so much awareness about it -- I don't think they have any idea. Lupus doesn't have as many celebrity patrons as many other illnesses. Like I said: it's mysterious, but not sexy. 

If we had more patrons (and patronesses), we would have more awareness. More awareness = more funding. More funding = more research. More research = a possible cure. 

I understand you're broke. I'm broke as shit because I can't do the volume of writing (my profession) that I used to do. But there's one thing you can do and that is pass on knowledge. Pass on this blog. Tell someone to read it. You know what Captain Planet says, right? "Knowledge is Power!" Well, yeah...Captain Planet is always right. (And I'm not just saying that because the 90's were my wonder years.) Listen to the captain and...

Spread some knowledge; save a life.

How I Spent Thanksgiving 2011: Complete with Crappy Art

How I normally spend Thanksgiving: 


When things are normal (read as: not absolute shit), my family follows a strict holiday routine. The only thing that changes it is death (ie it was once at Great-grandma's and is now at my grandma's, etc), or, of course, moving. So, how it stands in recent years, with all the death and then my dad and them moving to Virginia, our once complicated shuffle is now this little, simple, thing: We go to Ma's (dad's mom's) house to have "dinner" which is what you people call lunch. Actual dinner usual follows now that my Mom's mom, being widowed, doesn't host Thanksgiving. She instead comes with us to Ma's, because unlike 99% of the losers out there, we are a FUNCTIONAL BLENDED FAMILY.

Why I didn't spend Thanksgiving normally: 


My dad's sister came down with some raging stomach flu and no one wants food in the same room as someone like that.

So me, mom, and her mom thought: 


Why don't we just have a small Thanksgiving ourselves? And that's what the plan was. Grandmommy (mom's mom) rushed to the store to get all the fixings we would need, and we would go have it at my sister's house.

However, on Thanksgiving Morning: 


It became apparent that our "new plan" wouldn't work.

Yes, I was infected. With what, we didn't know, but I aimed to find out...

And then I worried over my findings for roughly 48 hours -- like this: 

After she finished being apathetic, Mom decided that I had Boston measles, lately known as Fifth Disease. (I want to point out that both names are nonspecific and are as pointless as each other.) And, since having lupus like I do, that could be a bad combination, it was decided that I would go to the doctor. And, since there was a possibility of Scarlet Fever, I also promised Mom I would mention I had a sore throat. 

This is what happened: 

You are probably asking yourself: 

"Why would a young woman who used to have to clean out her own guts be afraid of having her throat swabbed?" The answer: I honestly don't know. I just know that having things stuck down my throat bothers me, whilst having my tissues and meat be ripped out and prodded on whilst awake does not. 

Flashback to 1995: 

I personally loved Mom's hair then, back before the apathy really kicked in.

Flashforward to the present, to my DIAGNOSIS: 

I got reflective after we left:

All in all, I decided to go with the biggest pro of all: I was alive. So what if I had a rash that made me look like I had some dreaded pox? I was, despite being presently ill and having lupus, over all healthy-ish. And that was good enough for me. 

After I reflected, we got some food: 

And then all hell broke loose. 

And that's where I will leave you...for now. 

(Scroll down for notes and inconsequential bullshit.)

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P.S. (or B.S., depending on your opinions): All this crappy!art was drawn on the computer, by my hand, but still on the computer nonetheless. I haven't quite gotten the knack of not having a rougher surface to use as a control, which, as you can tell, leads to sloppyness. However, I find this sloppy psychotic-kindergartener-ish style charming in its own way, and I hope you do too -- until my talents improve. 

Also: I got sick and tired of coloring these cartoons, because I'm not a cartoonist. Also, coloring on the computer is even weirder than line drawing. Sometimes, when I color on paper, I use awesome medium like mascara and eye shadow and nail polish. Why? Because I learned some of these badass skills from Gladys Perint Palmer the Great. (I added "the Great" part, but isn't she? Also, if you actually take the time to Google her, you will understand how prestigious this all is...and when do *I* ever give a crap about prestige? *taps head*)