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Sunday, September 29, 2013

Chronic Pain: A Thief in The Night

(Before I start, I would like to thank Mr. Leroy Moses for the inspiration for this piece)

Chronic pain comes upon us like a thief, ready to steal away so many things that we hold dear.  For some of us, it sneaks up on us, taking a little here, a little there.  We don't notice the losses at first because they are so small.  And then one morning, we wake up to a new ache or pain, and we attribute it to sleeping wrong, working out a bit too vigorously, or just getting older.  We think that small pain will go away in short order, and just consider it an annoyance.  And then, that pain continues to grow.  It constantly reminds us that it is present and that it isn't going anywhere.

For others, chronic pain bursts in on us like a home invader.  The pain comes on us suddenly and violently.  We are totally unprepared for what is happening.  It could be caused by a car accident, a work injury, an attack of some sort.  No matter how it comes upon you, there is no way that you can be prepared for what has happened to you.  The pain is intense and unrelenting.  You believe, however that the doctor's and others working to help you will eventually take the pain away.  You do exactly as you are told, and slowly, you begin to realize that your pain isn't going away; you aren't getting any better.  The pain isn't going anywhere.

And that is just the beginning of the theft of chronic pain.  It doesn't just take away your feeling of comfort - it steals away the most important things in your life.  Chronic pain takes and takes, no matter what you do to stop it.  I know, because I live with pain on a daily basis.  Chronic pain stole into my life when I bent over to pick up a piece of paper, and my life hasn't been the same since that day.  Before my pain began, I had a husband and three little boys that I dearly loved, a job that I actually enjoyed getting up and going to everyday, friends; in short, I had a life.  I got up every morning, took a shower, fixed my hair and makeup and went to work.  I didn't think about doing these things, because they were simply part of my routine.  How I miss that routine today.

Chronic pain stole the obvious things from me.  I had to leave my job because I was no longer able to sit at a desk for eight hours a day.  The pain would be so intense that I would have to leave work early.  After a time, I was no longer a valuable employee, I was a liability.  And the job that I loved was taken away from me by that insidious thief.  I miss my job.  I miss the people that I worked with.  I miss feeling like I was contributing something to my community, and to my family.  I miss the social interaction with my coworkers.  And I feel robbed.

My children were little boys when chronic pain came into my life.  They were just starting school, making friends, starting to play sports.  I loved being able to rough house with them, or sit on the floor and play games.  I couldn't wait to get home from work to see them because I adored every inch of all three of them, and I still do.  When I first injured my back, I had to explain that Mommy couldn't play with them, but that I would get better soon and we would sit on the floor and play whatever game it was once I was well.  Weeks and months, and even years, passed.  And still the chronic pain remains.

My boys grew up.  I never got back on the floor with them again.  Chronic pain stole so much, not only from me, but from my family as well.  I missed ballgames because I knew that I couldn't sit in the hard bleachers.  It stole vacations we might have taken because I couldn't stand the long car rides, or walk through theme parks and the like.  And my beautiful boys would look at me and tell me they  understood.  When they weren't around, I would cry for this loss which they didn't deserve, but accepted as the way things simply were.

I am not the same woman that I was before pain became my constant companion.  Before I became a pain warrior, I had been a singer.  I studied music all the way through college, and I was good.  I could sing a Broadway show stopper or an aria in Italian.  I loved to perform, and I did every chance I got.  Once I got older, I loved to go to a bar that had karaoke, and get up on the stage and sing my heart out.  That part of my life is gone.  Pain has stolen my ability to perform.  My voice is still there, but pain makes going out too difficult.  I so miss the joy I got from this part of my life.

I am not alone in feeling the sting of theft from chronic pain.  Each of us living with this condition know what it is like to lose the things that we hold dear.  Some lose the ability to participate in a sport that they love.  Some are no longer able to take care of their daily needs.  Like me, many are no longer able to work.  Most of us can no longer walk for any distance.  We lose joy in small things like going shopping, going out to dinner with friends.  We can't attend concerts, or movies, or church.  We lose friends.  We lose confidence in ourselves.  And, saddest of all, chronic pain steals our hope.  Eventually, we stop hoping that friends will call again.  We stop hoping that we will be healed.  We stop hoping that things will go back to normal.

Yes, chronic pain is a thief, which steals so much from each life that it touches.  However, we have the choice to simply sit there and watch it take all we hold dear.  We can become the victims of pain, and wallow in the loss of hope that we feel, or we can choose to fight.  We can truly become pain warriors.  There are many things that chronic pain steals from us that we will never get back and we mourn those things.  But we don't have to allow it to take our spirit.  We can learn to love the person that we are now.  We still matter!  We are stronger than we give ourselves credit for.  How do I know this?  I'm still here, and I am still fighting the thief of chronic pain.

Thoughts on Not Sleeping

It is 2:51 a.m., and I am sitting in my recliner.  There is some stupid movie on the TV, which I'm not watching, but have on simply for the noise.  With the exception of this stupid movie, my house is quiet because everyone is sleeping.  I actually went to bed several hours ago.  I was so tired, and I was looking forward to lying down in my bed, pulling my comforter over me, and going straight to sleep.  This is something that I fantasize about quite often.  And, unfortunately, that's all it is anymore - a fantasy!  I have quit sleeping.  Oh, I catnap, but I never sleep more than a couple hours at a time, except on very rare occasions.  Tonight, I managed a whole 45 minutes!

The sad fact is that I'm not alone.  Those of us who suffer from chronic pain are prone to sleep disturbances.  I would love to quote facts and figures for you, but I'm too tired right now to look for them.  I'm not even worried about the number of pain patients who aren't sleeping.  I know they aren't sleeping because we talk about it.  We compare notes in the middle of the night in support groups that we belong to.  And this lack of sleep, combined with the pain we feel all the time, creates a vicious circle.  We can't sleep because we're in pain; the stress and anxiety from the lack of sleep makes the pain worse; the worsening pain makes it impossible to sleep.

I have gotten to the point that I sleep when I can.  If I feel tired in the middle of the day and I don't have anything that I absolutely have to do, I will crawl in the bed and take a nap.  Quite frequently, if I sit down and get still for any length of time, I am unable to stay awake, no matter what I do.  None of these naps lasts for very long, but if I didn't take my little naps, I wouldn't be able to function at all.  And for those of you who think that my naps are the things that keep me awake at night, think again.  It doesn't seem to matter if I nap or not.  I can still only sleep a couple of hours at a time.

This constant lack of sleep is having a profound effect on me.  I never feel rested, which in turn makes me very cranky.  If you asked my husband and children, they might tell you that I can be downright mean at times.  I don't mean to be, it just seems to happen.  I also know that I can be a lot more emotional.  Many times, I will burst into tears for no apparent reason over the dumbest things.  I can also feel paranoid, depressed, and mad at the world.  You try living on 14-20 hours of sleep for weeks on end, and tell me you aren't mad at the world, too!

Sitting here, I feel tired.  I feel a kind of mind-numbing tired, but I don't feel sleepy.  There is a difference between tired and sleepy.  I would give anything to feel sleepy right now.  If I was sleepy, I think that getting in my bed and lying down would be easy.  I don't think that I would have to lie there long before I actually drifted off.  But, since I'm just tired, I am avoiding my bed at that moment.  Why?  Because all I do is toss and turn, which makes me hurt more, and makes sleep seem even that much further away.  So I sit here.  And to keep my mind occupied, I write a rambling piece about how I can't sleep.

Friday, September 27, 2013

A Bit of My Story

I have been living with chronic pain for the last twelve years.  As some of you know, I bent over to pick up a piece of paper, and the next thing I knew, I was experiencing the most soul-numbing back pain known to mankind, in my humble opinion.  From that moment on, I have not known a pain free day.  The day after it happened, I saw my doctor, who sent me to a neurosurgeon because he thought that I had herniated a disk.  That wasn't the case, and I was told that it wasn't surgical at that point.  I was then sent to physical therapy, which didn't help at all.  The only thing that did help for a few hours was the electric stimulation and the hot packs.  My next trip was to a pain management doctor.  He gave me epidural injections, which didn't seem to do much of anything, either.

Eventually, I saw another neurosurgeon who told me that in his opinion, my condition had become surgical, and that it was severe at that point.  He told me that I needed two surgeries - one to decompress my spinal cord and one to fuse a portion of my spine.  He would handle the first part of the surgery, and an orthopedic surgeon would handle the second part, and they would do it during the same procedure.  To be honest, I was told that there was a chance that it wouldn't relieve my pain, but at that point I was desperate.  I would have done just about anything to stop the pain that I had lived with for the last two years. 

Immediately following the procedure, I did get some relief.  For about the first six months, I was almost back to normal, and then the pain began to return.  The orthopedic surgeon kept telling me that it wasn't his fault, and the neurosurgeon left all of the follow-up to him.  Eventually, I was referred back to pain management and diagnosed with failed back surgery syndrome and chronic pain.  I started in with epidural injections again, which still didn't help.  Eventually, I started to have pain throughout my entire body.  My muscles ached so badly and nothing seemed to relieve the pain; even my skin hurt and I couldn't stand to have anything touch me.  In time, I was diagnosed with fibromyalgia.

And so, for the last twelve years, I have been in pain for just about every single day.  I am not the same person that I used to be.  I live under a veil of sadness that I used to not experience - there is sadness that I am not the mother and wife I want to be; sadness for the career that I lost; sadness for the inability to do many of the things I want to do.  I want to be the person I was, but I fear that she is gone forever, and I have had to mourn the loss of her.  I have also had to mourn the loss of the life I wanted to live.

Instead of being able to progress further in a job that I loved, I had to leave that job because I was no longer able to sit at a desk for eight hours.  Instead of being able to go to my son's football and basketball games, I was at home trying to find a position that didn't leave me crying from pain.  Instead of taking my kids to the movies, I would rent something for them, and then go into the bedroom and pray that they couldn't her me sobbing from that unrelenting pain.

Recently, my middle son started college, and I was so looking forward to taking him to school, helping him put his dorm room together, and starting him off on this next chapter of his life.  In the back of my mind, I knew that it would be a challenge for me, but I kept telling myself that I could handle it.  I completely miscalculated!  By the time I reached the car to leave that day, I was in a kind of pain that I didn't think would ever come to an end.  It took me over a week to be able to function again.  A normal person wouldn't experience something like this!  I want to be a normal person again!

Believe it or not, one of the few bright spots that I have found is Facebook.  I have gotten to know others suffering with the same things that I suffer with.  I have friends who actually understand what I am going through.  I am able to get and give support to people who get it, and that is such an amazing blessing.  It makes me feel almost normal again!  I have met people who understand me and are willing to listen when I need to talk about the pain that I am in.  I don't feel like I am annoying them and I don't feel like I have to smile and say I'm fine.  You know who you are, and I am so blessed to have you in my life.

Sunday, September 22, 2013

Pain Warriors

We all know pain when we feel it.  Stub your toe in the middle of the night, and trust me, you know pain!  As children, we skinned out knees and maybe even broke a bone and we knew what pain felt like.  Each and everyone of us has felt physical pain at some point in our lives.  At the time, we think that nothing could possibly hurt quite as much, and we may have even thought that no one else had ever experienced anything quite as bad.  If the problem is severe enough, we will go to the doctor or to the emergency room to be treated.  Within a few days, or sometimes weeks, we are back to our old selves - the pain a distant memory.

For those of us who suffer with chronic pain, this, unfortunately is not the case.  Our pain does not go away after a few days, or weeks, or even years, in many cases.  Most of the time, we know the causes for the pain that we feel day in and day out.  Perhaps we have back problems which required surgery and it didn't solve the problem.  Many with arthritis, both RA and OA, experience devastating daily pain.  We feel the deep tissue ache that comes with fibromyalgia.  Some, however, have no explanation as to the source and cause to the pain they are experiencing, and most doctor's are at a loss as to how to treat them.  And when a cause can't be found, many are told it's all in their head or they are simply trying to get drugs.  It is devastating to the sufferer.

Most of us who battle chronic pain on a daily basis face ridicule, rejection, and disbelief more than once along the way.  Friends and family may turn on us, not understanding why the pain doesn't go away.  They tell us we've changed and that we aren't the same person.  No, we aren't the same person.  Many days, it takes every ounce of energy we have just to walk from the bedroom to the bathroom.  We don't have anything left to entertain you with.  On other days, when the pain maybe a little more under control, they will tell us that they don't understand why we couldn't get out of bed yesterday, and yet we can to the store today.  The truth is, we don't understand it either!  We simply do what our bodies allow us to do when they allow us to do it.

Those of us with chronic pain refer to ourselves as pain warriors.  We fight every single day to overcome our limitations.  We often push ourselves to keep working long after the pain can leave us curled up in a ball at the end of the day.  We push ourselves to go to our children's sporting and school events, despite that the fact that sitting on hard bleachers,, often in the cold or heat, will put us in the bed for the next several days. We fight to try and keep our family's life as normal as possible, even though there are days when we wonder how we are going brush our teeth, much less do laundry and cook dinner.  But push on we do, because we aren't quitters!

I have come to know so many people who are living with chronic pain, and every day I am amazed at the strength they show in the face of the scourge of this debilitating condition.  I see people facing life, and the future with hope, despite the pain that they feel every single day.  I see people finding the courage to stand up for themselves when faced with ridicule about their condition.  And I see people willing to give love and support to another who is going through the same thing.  They give their time, their experience, and their heart to one another.  And while I wish that no one had to wear the mantle of pain warrior, I couldn't be more proud to stand up with and for the amazing men and women I know who are fighting this battle.

Saturday, September 14, 2013

My Birthday Wish

Wednesday will be my 51st birthday, and while it's still a few days away, I thought that I would go ahead and blow out the candles on my cake and make a wish for the coming year.  To be honest, I do have more than one wish, and since these are make believe candles, I'm going to be generous and give myself more than one wish this year!  Once you're over 50, I think you kind of deserve more than one wish on your birthday!

The first thing that I am going to wish for is sleep.  I am talking about deep, restorative sleep.  I want the kind of sleep that, when you wake in the morning, you know that you've been sleeping, and you feel refreshed and ready to face the day.  I can't tell you the last time that I had that kind of sleep.  Due to my chronic pain issues, and a natural tendency toward insomnia, I rarely sleep more than 3 or 4 hours a night, and many nights I don't sleep at all.  Last night, I managed one hour of sleep - from 5:00 this morning until 6:00.  Needless to say, I don't feel refreshed.

Insomnia, and other sleep issues are very common among those with chronic pain issues.  According to an article in Science Daily, 80% of people with chronic pain suffer from sleep disturbances.  Those disturbances range from difficulty falling asleep, difficulty staying asleep, and full on insomnia.  Needless to say, there are a lot of people out there who are worn out.  And this creates a vicious cycle; you are in pain and you can't sleep, and then your lack of sleep causes your pain to increase.  We need some sort of resolution to this issue.

My next birthday wish is for the war on chronic pain patients to stop.  Congress, the FDA, the DEA, and various other entities have basically declared open season on those who suffer from chronic pain issues.  Now, you will hear them say that this is not the case.  You will hear them say that the changes they want to enact are designed to address the issue of drug addicts abusing the system.  But the truth of the matter is that it is the chronic pain patients who are suffering for the changes being enacted.  Doctor's are refusing to treat patients with pain issues, and the ones who are still treating pain patients are severely limiting the treatment they do provide out of fear of losing their licenses to practice medicine.

The truth is that it is not the chronic pain patients who are abusing opioids or the system.  Chronic pain patients are not looking for a high; we are looking for relief of our pain.  We are not out there doctor shopping.  We are simply looking for a doctor with whom we can get along, and who will help us in our quest to live as close to normal a life as possible.  The people who are abusing the system are the drug addicts, and even if those seeking to tighten the noose on pain killers succeed, the drug addicts will simply get there drugs on the street.  It is the chronic pain patient, who is trying to do things the right way who will truly suffer.

My final birthday wish is for not only just myself, but also for my brothers and sisters who also suffer from chronic pain issues.  I wish that we each gain compassion and understanding.  I wish that people stop seeing us as lazy, drug addicted drains on society, and that they recognize us as people who are suffering from an invisible illness.  I wish that people would realize that this is not the life that we have chosen, and would much rather live without pain.  I wish that each one of us was simply normal.

Sunday, September 1, 2013

My Crazy, Busy Life!

The last couple of weeks has just been non-stop for me.  Staying busy like this keeps my mind off of my pain for awhile, but eventually, it rears its ugly head once again and lets me know that chronic really does mean CHRONIC!  Today, my body decided to remind me that everything still hurts and that there is very little I can do about it.  I can almost hear the pain gremlins laughing at me.  It's like they are telling me that they are in control and I am at their mercy.  It really makes me angry sometimes.

So what have I been up to for the last couple of weeks?  The biggie was taking Matt to college for the first time.  He is a freshman at the University of Louisville this year, majoring in biochemistry, with plans to go to medical school.  I am so proud of him!  The walking just about did me in when we moved him in, although Matt and Jack both said they were amazed at how well I handled it.  Jack figures that we probably walked a little over a mile that day.  By the time we got home, I was in tears from the pain, but I survived, and that is something, in my book!

I haven't been able to take any time off to just sit and let my body recuperate.  There have been so many errands that have to be done, and since Dale can't drive anymore, it has fallen to me to take care of everything.  Running to the store, taking Jack to his different activities, doctor's appointments, you name it, I've done it.  Most "normal" people would simply say that's life, and wonder why it would be difficult for anyone.  But my fellow chronic pain sufferers know what I am talking about.

Jack had to have all four wisdom teeth pulled on Thursday, so I have also been wearing my Dr. Mom hat this week.  He hasn't had nearly as much pain as I thought that he would, but bless his heart, he looks like a chipmunk!  I have even taken to calling him Alvin every now and then!  The hardest part for Jack has been the liquid diet.  The poor child is convinced that he is starving to death. I finally convinced him that he could eat canned ravioli, and oatmeal, and that seemed to fill him up a lot better than jello and soup.  Yesterday, he even at a few bites of chicken nugget!  I think he's going to survive!

I think everything finally caught up with me yesterday.  Every time I sat down and got quiet, I fell asleep.  I slept off and on all day yesterday!  In fact, last night I fell asleep sitting up. I woke up at 8:30 this morning, still sitting up straight.  I could barely move because each and every muscle was so stiff.  I did manage to lie down and I slept a couple more hours.  As of right now, I'm still hurting!

Lastly, I have to brag on myself.  I have smoked for 30 years, and I haven't been able to quit.  The truth of the matter is that I really like smoking.  I know that I need to quit, but the thought of the withdrawals honestly kept me from trying very hard.  But, the time has finally come that I am getting serious about quitting.  I had previously tried an electronic cigarette with the cartridges, but it was a waste of time and money.  I didn't like it at all, and within a couple of days, I was back to smoking again.

One of the pawn shops in town has been advertising a different type of electronic cigarette, which uses a liquid nicotine and an atomizer instead of the cartridges.  I talked to a couple of people who have been using it, with great success.  Well, I bought one the other day!  You gradually decrease the strength of the nicotine that you put in it, until you aren't using any.  And I am happy to report that I haven't had a real cigarette in three days.  I know that isn't very long, but for me, it's impressive!

I hope that each of you remembers to take care of yourself, and that your pain levels are tolerable at this point.