The Dangers Of Prescription Pain Killers: A Tribute To Brenda Jones

This is by far, the hardest post I've ever had to write.  I've tried to start it off and on, over the past few hours and each time my eyes would fill with tears to where everything just looked like a blurry mess.  Finally, I took a deep breathe, audibly exhaled, and I've started writing.  Dear Lord, please help me get through this post, and give me the correct words to properly convey my thoughts and message.  This is a subject I've briefly touched on a few times over the past four years.  Now, I need to write indepth about it.

Meet Brenda Jones.  Brenda was a fellow chronic pain sufferer, and a cancer warrior.  She was one of us. More than that, Brenda was my friend.  A true friend.  She honestly worried and cared not only about me, but about any one she knew that may be suffering along with her.  I can't tell you how many times Brenda would comment on a facebook post of mine, making sure I was ok and praying that a current pain flare would quickly end for me.  She'd send me messages off and on, checking in on me, as I did her.  I've never known a person to just ....love ....more than Brenda did.  

What mattered the most to Brenda?  Her family.  I cannot begin to tell you how much her son Jordan, her daughter-in-law Natalie, and the apple of her eye, her granddaughter Koralee meant to her.  I just thought that I'm a proud grandma.  I've honestly never seen anyone more proud of a grandchild, than Brenda was of Koralee.  Just look at the pride beaming from her eyes, the very first time she held this little beauty:

Brenda had one secret from me though.  She was addicted to prescription pain killers.  Brenda passed away, 2 days ago from an accidental overdose.  Her son Jordan, walked into her bedroom and found her. Brenda absolutely would not have wanted her son, to have to find her like that.  She didn't want to die.  She wanted the very same thing that you and I want.  She just wanted to be pain-free.  

This whole incident has taken my breath away.  It's left me crying off and on.  It's made me angry.  Most of all, it's scared me.  It scares me, because it just as easily could have been you, or me.  I read of Brenda's passing, sitting in the lobby of my pain management clinic, waiting to be taken to the operating room to have neves burned in my neck under sedation.  -Anything to try and relieve the pain in at least one area of my body.  Anything, right?!  Most of us would give anything to try and live a half-way pain free life.  To have a half-way normal life again.  That's why many of us take prescription drugs.

Brenda's son Jordan, and beautiful daughter-in-law Natalie

No one who truly suffers from a chronic pain condition, sets out to be a drug seeker.  No one who truly suffers from a chronic pain condition thinks that they'll become addicted to prescription meds.  To be honest, most that are addicted, probably don't even realize that they have developed a problem.  This blogs facebook page, has over 17,000 followers and I have had people say to me on the page, "I'll never become addicted to narcotics, because I'm not a druggy.  I just need something to help me function without so much pain."  I've had people get angry at me, when I've responded to a question on whether someone should try to get pain meds or not, that in my opinion a person should hold off as long as possible.  

Over the years, I've had doctors ask me if I wanted narcotics.  I always told each and every doctor that I wanted to wait for as long as possible, before starting narcotics.  Would my life have been easier and more normal if I had accepted them?  It sure would have been.  I didn't though, for a couple of reasons.  Firstly, I've hated medicine all my life.  Even as a teenager my mom would fight me to get me to even take a Tylenol.  Secondly, the thought of addiction scared me.  Thirdly, I knew that if I took a certain pain pill for so long, it would lose it's effectiveness and I'd have to be upped on the dosage.  Eventually, I'd top out on the dosage and have to move up the tier to a stronger narcotic.  Again, it'd lose it's effectiveness.  This would be a cycle that would continue and eventually I'd be out of any pain killer that would work.  -There's only so many out there.  The illnesses I have, I will have for the rest of my life.  I didn't want to be in my 50's, and already have run the gammit of drugs available to help me.  They say that Fibro isn't progressive, but I beg to differ.  My symptoms have worsened in severity over the years.  My doctor even told me last year, "Amy, your health is declining.  I can not only see it physically, but also the toll it's taking on you mentally."

Grandma's Pride & Joy

According to DrugAbuse.gov, around 116 million people suffer from Chronic Pain, in the United States.  (you can read the full article by clicking HERE)  PainMed.org says "Prescription drugs are the second-most abused category of drugs in the United States, following marijuana."  

They also say "From 1998 to 2008, the proportion of all substance abuse treatment admissions age 12 or older who reported any pain reliever abuse increased more than fourfold."

Along with this sobering statistic: "Prescription painkillers are considered a major contributor to the total number of drug deaths. In 2007, for example, nearly 28,000 Americans died from unintentional drug poisoning, and of these, nearly 12,000 involved prescription pain relievers."

A new report came out today, stating that singer Prince's death was confirmed to be an accidental overdose of Fentanyl.  Article About Prince

This past February, after carefully considering everything for years, I went ahead and started on narcotics.  I take one 5-325mg of Norco a day.  It truly does help my pain, but every single day I have the "what if I get addicted" thought in the back of my head.  I have the "what happens when these stop working" question lingering in the background.  My beautiful Brenda's tragedy has me scared.  It hurts me beyond belief.  Never, ever think that you're above this.  Never think that this can't happen to you, because it can.  

I want you to read part of Jordan's announcement of his sweet mother's passing:  "Addiction is powerful, no matter what you are addicted to. I hope that if anything positive can come from the passing of my mother, it is that prescription medication addiction is no different than any other drug. If you are unable to accept you have a problem and do not receive help, the end result is the same. Death is unavoidable,and comes in many different ways. However prescription drug addiction may seem not as bad as meth or cocaine, but as a direct reflection on my mother's life I have watched her die slowly, a little more everyday. So if you know someone suffering from this, try to get them help. I ask you PLEASE PLEASE PLEASE do not be an enabler! No matter what you have to do, regardless of the friendship you may lose or how mad the person may be when told no, DO NOT ENABLE THEM! "

How eloquently, yet truthful and heartbreaking is that plea?  That could be your son or daughter making that post.  Please, please if you even think you may have developed an addiction to your prescription meds, seek help.  Please don't be embarrassed.  Doctors know that those who start taking meds for chronic pain aren't out to try and become addicted.  It just happens sometimes.  Please, don't EVER take more than what's prescribed to you.  If you're in so much pain that you just can't handle it, make a trip to the E.R. or your doctor's office and let a physician try to get it under control for you.  Don't take a chance.  Your life is more valuable than you realize.  If you think you may have a problem, here's a national toll-free hotline number that you can call for help:  National Toll-free number: 1-800-821-4357

Koralee, BB may not be able to hold you in her arms or smooch your precious cheeks anymore, but she'll always be with you and looking out for you.  You were her whole world, precious girl.  Everytime you see a butterfly, know that BB is there with you.  

To my sweet, sweet Brenda ....you are finally free from the pain.  I know you're with us and know the sadness we feel.  My life is truly better from knowing you, Sweetheart.  I'll never forget you.  Fly-high being pain free, Angel.

At Least It's Just Fibromyalgia

This post probably isn't going to gain me any popularity, but that's ok.  Those of you who know me, know that this blog has never been about popularity.  It's about speaking my mind concerning Fibromyalgia and other chronic pain and fatigue illnesses, no matter the outcome.

The friend of a friend said to me recently that she heard I have some health issues.  I replied yes, that among a lot of other things I have Fibromyalgia.  She was silent for a minute and then she said "At least it's just Fibromyalgia.  It isn't like it's something that could kill you like cancer or something."  Without missing a beat I looked her directly in the eye and replied with "I'd rather have cancer."

Eyes wide and mouth gaping open she was stunned into silence for a few minutes.  When she regained her composure she asked if I was serious.  I told her that I was completely serious.  I explained to her that Fibromyalgia is a strange illness, in that it effects people in different ways.  It has varying degrees of implications on different people.  Some people have it enough to notice it and have it be annoying, while others are completely bed-ridden from it.  I've even known of a lady who in a flare couldn't stand up and walk, and had to crawl on her hands and knees to the restroom.

Don't get me wrong, cancer is a horrible monster that causes pain, agony, and destroys lives and families.  I wouldn't wish it on anyone. So does Fibromyalgia though.  With cancer, the pain and agony is going to end.  No if and's or but's about it.  The pain and sickness will come to an end.  Either a person is cured or else they die.  With Fibro, there isn't any end in sight.  It's an entire life stuck in an earthly hell of pain, fatigue, co-morbidities, and sickness. 

In my thought process, I'd rather have the chance of a cure and at least knowing if it doesn't work that my pain will end anyway.  Yes, I'm thankful to be alive but thinking about having to live for 40 or 50 more years trapped in this hell is daunting and to be completly honest, I'd rather not.  No, I'm not suicidal in the least, I just would rather not have to live this way knowing it could be decades upon decades.  

I'm a big quality vs quantity type of person.  If I can't have a good quality of life, than I'd rather not have it span out for decades.  The diminished quality of life that I lead, has much to be desired.  It has tore apart my family.  It's isolated me from friends and family.  It's left me depressed.  The level of pain that I feel with a flare of IBS; a co-morbidity of Fibro, is incomprehensible at times.  My latest episode a few weeks ago left me screaming and my daughter ran into the bathroom just in time to see me pass out from the pain and fall from the toilet to the bathroom floor.  -And I've had four children without any type of pain relief.  I'm not just some whimp!

A couple of nights ago, I sat at my desk with tears running down my face from the pain I was experiencing in my neck and shoulders.  I finally realized that I was sitting with my shoulders pulled up as far and tight as I could.  Although that was my bodies natural reaction to the pain I was experiencing, I knew that it was only making things worse.  It took every ounce of concentration I could muster, to keep relaxing those muscles and allowing my shoulders to go back down to a natural position.

My daughter kept begging for me to make a box of brownies.  Last night as tired and fatigued as I was, I decided to make them for her out of the guilt I was feeling.  I had to stop stirring the batter several times due to the pain and cramp in my hand.  Twice while trying to stir the batter I had to stop and grab the bar on the stove, and slowly bend over stretching my back due to the pain I was experiencing from standing for those few minutes.  

My symptoms are so severe and I have so many co-morbidities that I'm deemed disabled and I'm unable to work.  That further restricts my contact with other adults and the outside world.  It leaves me poor, as I live on less than $750 a month.  That means that not only can I never vacation - oh how I dream of a week long vacation on a beach somewhere lounging around in the sun, splashing in the water, and sitting in a hotel hot tub.  Eating out and not having to cook or do dishes - but I struggle to put clothes on my back and food in my house.  Eating out is a rare luxury.  I've decided to try to see a movie at the $3 afternoon rate once a month, so that I can have something to look forward to and to do.  Of course, it'll all depend on how I'm feeling that day.

Every single day, I have 12 or 13 meds that I have to take.  A couple are once a day, but most are two to three times a day.  I hate taking meds with a passion.  Even as a teenager I'd suffer through pain instead of taking a Tylenol.  

At times, I'm left feeling stupid or embarrassed due to Fibro Fog.  For those that don't know, Fibro Fog is the name given to the cognitive delays one can experience with Fibromyalgia.  I'll be in the middle of speaking (or writing) and forget what I was even talking about, let alone what I was going to say.  I'll walk into a room and forget why I went into the room.  Shortly after starting this post, I went into the kitchen to make a cup of coffee.  I opened a bottle of water to dump into my Keurig, and found myself instead pouring it into my coffee cup.  It made me mad and disgusted with myself.

Insomnia (leading to sleep deprivation), another wonderful co-morbidity of Fibro.  It literally rules my life.  I've been awake for 36-48 hours at a time.  I've been so tired that I've literally cried.  Not getting the proper rest leads to more pain and depression.

Not every person with Fibromyalgia experiences it as severly as I do, so please don't read this and think this is definitely going to be your life.  On the other hand, some people with Fibro experiences symptoms more extreme as I do.  Such as the lady who had to crawl to the bathroom.  There's just no way to guage how it's going to effect a person.

All of this combined plus more that I didn't even delve into, leaves me saying yes, I honestly would rather have cancer than fibro.  Given the choice, I'd choose neither.  I'd choose to be illness-free.  I'd choose to be healthy and happy and a productive member of society.  That isn't the road that God chose for me though, so I'll awake every day.  I'll go through each and every day with as much optimisim as is possible.  I'll make the best of each day as is possible, and do the best I can.  I hope this post doesn't offend anyone and if it does I'm sorry ...but I won't apologize.  These feelings are mine.  They're real, and I own them.

Credibility

Credibility.  It's such a simple looking and sounding word.  "The quality of being believable or worthy of trust."  Even the definition sounds simple, doesn't it?  It's so much more than that, though.  It's really so in depth, that it's mind boggling.  

How do you decide if something, or someone, is credible?  Does something have to be tangible? Do you have to be able to see it or feel it, to believe in it and it's credibility?  What about God? Or religion in general?  You can't see God, but a lot of people believe in Him.  A lot of people believe in the bible.  What lends credibility to the bible, for people to believe in it?  They just do, right?

What about the credibility of people?  Or of illnesses?  Or of people who have illnesses?  What makes their feelings, their symptoms, real and credible?  Many people will answer that question with "Well the doctor saying so makes it real and credible.  Duh.  The results from their tests make it real.  What a dumb question!".  No, not really. 

Let's pretend we have four people standing side by side.  They're lined up on a stage, in front of a large audience of people.   First, we have a person who has cancer.  They have patchy hair on their head, and they're pale and have dark circles around their eyes.  They look at you and say "I don't feel good.  I'm sick to my stomach and my body hurts.  I'm really in a lot of pain today.  I'm just completely exhausted.  I have to go lay down now".  

Next, we have a person who has MS.  They're standing there with a cane.  Their eye is watering.  They say "I'm just coming out of a flare.  My face is numb, which is making my eye water because it feels funny to it.  I'm weak, and have to use my cane right now to walk.  I'm just so tired".  

The third person says "I have fibromyalgia.  My body feels like I've been beat with a baseball bat.  It hurts to turn my head, or raise my arms.  My legs ache and my back, hips, and legs hurt so bad that I can barely take a step today.  I woke up feeling just as exhausted as when I went to bed last night.  But of course, I couldn't even fall asleep until close to 5am due to the pain and insomnia that fibro causes. I don't have an appetite, and when I try to eat, I feel nauseous".  

Lastly, there stands a person who suffers from severe depression.  They say "I feel worthless.  I don't feel like I have anything to live for.  I just want to sleep.  I don't even have an appetite any more. I want to lay down and sleep and never wake up.  I hurt in my heart.  I want to be happy.  I want to go do things and have fun, but I just can't.  I don't want to live like this any more".  

After looking at these four people, and hearing what they have to say, the large audience is asked to vote as to which one of these people is the sickest and to write why they believe the way they do.  What do you think the outcome of this vote would be?  Which person is the sickest?  Which person do people generally feel the most sorry for?

Of course I haven't conducted this experiment.  This is just all personal opinion and perspective from what I've seen and heard in the world of illness. my personal conclusions though, are of course the person who has cancer is the one that's going to get the most votes.  Next, the person who has MS will get the 2nd most votes.  Even though the person who suffers from severe depression may receive comments on the forms such as "It's all in your head." ..."You could be happy if you'd just let yourself be" ...etc, they'd come in as the 3rd sickest in my opinion, and last place would be the person who has fibromyalgia.  The fibro person may garner comments such as "Quit being a hypochondriac" ...."It's all in your head" ...."Your illness isn't that bad" ...."If you were really that sick, you'd be able to tell it just by looking at you" ...."Fibromyalgia isn't even real.  It's just something someone made up to shut up all of the hypochondriac's out there" ...etc.  I could go on, and on with possible & probable comments that those cards would receive.  

My question is, what makes the person who has cancer or MS more crediable as to how they're feeling than the person who has fibromyalgia or depression?  All four of these illnesses are terrible.  All of them are their own form of a living hell.  They're a form of personal torture and take away from a good quality of life.  But why do people sympathize with the one who has cancer and the one who has MS, but doesn't believe the one who has fibromyalgia and the one who has depression?   

Tangible results are why.  Blood tests, xrays, MRI's, CT scans, PET scans, scars from surgery.  All show definitive results that something is wrong inside of the person.  Visual accountability.  They can see with their own eyes, the balding head.  The dark circles.  The scars.  For some reason, in the area concerning a person's health, people are hung up on the tangibles.  If they can't see it, they don't believe it.  In the minds of most people, if it can't be proven, beyond a doubt, then it doesn't exist.  It isn't true.  

Why people can believe in certain things that they can't "see", such as God and the bible, but can't believe in another person when they say how they feel, is beyond me.  It really saddens me and hurts my heart.  Everyone's pain is valid.  Everyone's pain counts.  Everyone who is suffering, no matter from what, deserves to be heard and to be believed.

This is one reason why research for fibromyalgia and other chronic pain conditions is so very important. New research has been pointing us in the right direction as to "proving" fibromyalgia is real, but there's still so much that we need to learn.  To make our illness credible ....to make our voices credible, we need to learn so much more.  When people do not believe us, it makes it so hard to garner the support and funds for further research.  Without that research, we will never be credible.  We're going to have to find the "why" of fibromyalgia, to be believed.  

I spent a few days last week with a person who has MS, and a healthy person, both at the same time.  The healthy person went on and on about how terrible MS is.  How I'm sooooo lucky that I "just" have fibro and not MS or cancer, or something else that's horrible.  Well, you know what?  Having fibro is pretty horrible too in it's own aspect.  It's not much fun to feel like you have a sunburn all the time on your skin.  It's not much fun to feel like you have the flu every single day of your life.  It's not fun to be in a flare where you honest to God feel like someone took a baseball bat and beat the living crap out of you the night before.  I don't like saying "ow" every time I go to stand up, or move my head.  I hate being so exhausted that I sit and expend energy I don't have to spare, crying, yet if I lay down to sleep I just lay there.  Then I toss and turn because if I lay on one side for a bit I start to hurt.  So I say "ouch" as I turn over because it hurts to move my body to turn.  Then I repeat the process a few minutes later.  Over and over for endless hours at a time.  When I wake, I feel just as tired as when I went to bed, because my brain doesn't go into, or stay in, a deep restorative sleep pattern.

When I vocalized that fibro isn't a picnic either, I was met with "Maybe not, but it isn't as bad as what poor S goes through all of the time.  She's been to four different doctors who have all proven that she has MS".  Hmmm.  Really?  I've been to several different doctors too, who all say I have fibromyalgia.  It may be in different ways, but how can you say that what she has affects her worse than what I have?  How can you discount how my body feels?  What makes her more credible than me?  

I felt like a failure, because I just couldn't get her to understand about fibromyalgia.  She just wasn't open to being educated about it.  I had to keep reminding myself, that she doesn't know much about fibro.  She doesn't know what the latest research has shown.  She doesn't hear about fibro in the news, or read about it in the papers.  We in the fibro community haven't made a big enough deal about it, for a long enough period, to demand the media attention that fibro deserves.  You see/read stories all the time, front page news, about someone with cancer.  Or some new research or therapy on the cancer forefront.  You hear/read about MS.  Honestly, how often do we hear/see/read about fibromyalgia?  Not very often.  

As a person who suffers from almost every co-condition of fibro, I feel personally responsible for getting our voices heard.  I feel personally responsible for trying to educate those who doesn't have a clue what fibro really entails.  I also feel responsible for letting every single person out there with fibro know that I'm here for them.  That they aren't alone, and that I believe in them and their symptoms.  I feel like it's up to me, to do my part in trying to educate the media and try to get them to run with the story.  If that doesn't happen, then we in the fibro community will never have the credibilty that we deserve.  Without that credibility, than we'll never garner the support financially for further research to find our why, our how, and our CURE.  If a cure can't be found, then we at least deserve a treatment plan that works universally for all of us and gives us back some normalcy.  We deserve that every bit as much as someone with cancer, or MS, or depression, or Lupus, or any other miserable, lousy disease out there.  We must start demanding the respect and credibility that we rightly deserve.

Quality VS Quantity Of Life

Last night, I went with my kids and their friends to the little village that's 5 miles away from us.  They have a little one day festival type thing, then end the night with fireworks.  Since I wasn't able to watch fireworks on the 4th of July, I was excited to go.

Every year I take photos of the fireworks but this year, I decided to try and video them too.  My camera is a Canon T3i and it's supposed to have professional quality HD video built in.  I'd never tried using it before though, so I was fumbling around in the dark trying to figure it out lol.  I couldn't believe though, how much it hurt me to video it.  I had to tape a little, then shut the video off, then tape a little.  A minute or so into the third taping, I had to ask my daughter to take it.  I was left with horrible neck, shoulder and arm pain, and it put a charley horse in the middle of my back.  Even with the first taping I did, I missed having it centered and getting it all in, due to the pain it was causing me to hold the camera up aimed at the sky.

I was going to upload the first clip, to show how shaky I was trying to video right from the beginning, but for some reason I couldn't get it to upload to blogger.  It keeps telling me there was a problem uploading the video, but it doesn't tell me what the problem is lol. I will insert some photos of fireworks instead I guess.  I had taken some before I got the idea to try and use my video for the first time.

We all know that doing simple household tasks can be hard or even not doable at all sometimes, but it's the simple, little things, like trying to shoot a video with a camera that always throws me for a loop.  Things that people take for granted and don't even think about.  I never would've guessed how much it would hurt me to take a video.  My neck and arms still hurt this afternoon from it.  

This is no way to have to live.  Fibromyalgia (or insert Lupus, Arthritis, CFS/ME, etc) may not be fatal, but it sure stills your quality of life.  I've always believed that quality is better then quantity, and that holds true in my health and my life.  Not being able to bend over and pick something up from the floor, or run a sweeper. Being in tears after fixing a meal...sometimes in tears after just frying an egg, having to take breaks to unload and reload a dishwasher....  I could go on and on.  That's not quality, that's quantity.  I have a friend that wants my daughter, her boyfriend, and I to go to the zoo with him.  He told me to pick a day that I wouldn't be in a lot of pain.  I rolled my eyes and told my daughter and her boyfriend that this friend of mine needs to be the first one signing up for my seminar to learn the truth about living with chronic pain.  Oh how I wish I could know what day would be better then another for pain.  Unfortunately, it just doesn't work that way.  

I'm asking again, for you all to please share this blog with your friends and family.  If you're a blogger yourself, please share this blog with your readers.  It's so very important to me, to educate people about life with an invisible illness that causes chronic pain.  Unless you live with it yourself, it's really hard to grasp what life is like, living this way.  Someone once said to me "At least you don't have cancer.  That could kill you and with this you won't die.".  I paused, then responded with "You're right.  It won't kill me.  Have you thought about the fact though, that people with cancer have hope?  There are solid treatment plans mapped out for all types of cancer.  A person with cancer, has hope of one day being cured.  They have hope of their pain and sickness ending.  Even if they do die, at least they aren't living for years and years in sickness and in pain.  One way or another, their pain ends.  I don't have that hope.  I know that I will have to live every day of my life hurting and sick.  If the quality of my life is going to be so limited and so painful, then do I really want to live until I'm 70? 80? 90 years old?".  I also went on to say that I know what a horrible beast cancer is, and my heart breaks for those that have to go through cancer.  Please don't think I'm an insensitive jerk because I'm not.  In fact, had I finished nursing school, I wanted to work in pediatric oncology.  This is just a way to get people to stop and think about what invisible illness and chronic pain sufferers go through.   I'm really hoping for a packed house for my seminar, because people really need to understand and learn.  They really need to stop and think.  Again, please share this site or my facebook page, and the flyer for my seminar.  I thank you all in advance!