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Saturday, March 31, 2012

Ripples

Have you ever thrown a rock into a pond, and watched the ripples spread out from it?  Everything we do in life creates ripples which affect those around us.  Some of the ripples are good.  A parent who sacrifices to make sure that her child is able to accomplish his dreams; a doctor who uses his skills to save the life of someone; these ripples have positive outcomes for all involved.  But, the bad we do can create ripples as well.  My birth father created negative ripples, which continue to affect me even today twenty years after his death.

My mother and father divorced when I was only 4 years old.  Ronnie was a drunk who only cared about himself.  My mother has told me that there was times when the only thing in the refrigerator was beer, and she had no idea how she was going to feed my sister and I.  She would pray to God for help, and somehow, my grandparents would show up with a car full of groceries.  Not long after my sister was born, Mom realized that she had done all she could.  She came home one night from having dinner at my grandparents.  She had just put me in the bathtub, when Ronnie walked in, drunk of course.  He looked her in the face and said, "I hate you, I hate those two brats of yours.  Get the hell out of my house."  My mother didn't say anything else.  She got me out of the bath, bundled up my sister and me, and we went back to my grandparents house.  That was the last time that I lived with Ronnie.

The divorce was contentious.  Ronnie didn't want my sister and I, but he didn't want my mother to have something he considered to be his property.  My mother's attorney told her not to let him get us across state lines, because he felt she would never see us again if he did.  I remember going to Ronnie's parents house once and to his sister's house another  time.  Those are the last two times I remember seeing him.  Years later, Ronnie's attorney came up to my mother at a party.  He told her that he owed her an apology.  The attorney stated that Ronnie was the meanest son of a bitch he ever represented and he had regretted it for all these years.

Shortly after they separated, my mother met the man who would become my Daddy.  He was friends with my grandmother's next door neighbors and they met over there one evening.  Now, this was in the mid 1960's and they could not be seen in public together.  They would meet at the neighbor's house and fell in love with one another.  One day not long after they met, Ronnie showed up at my grandparents' home, drunk and carrying a gun.  He was yelling and banging on the door, threatening to kill all of us.  My mother called my Dad, her boyfriend at the time, and told him what was going on.  He left work, went to his house and got a shotgun and headed for my grandparents.  By the time Daddy got there, Ronnie was gone.  He and my mom found me sitting on the edge of the couch in the living room, staring straight ahead without blinking, rocking back and forth with my arms wrapped around myself.  The two of them sat with me, talking soothingly for four hours before I started to come out of it.

To this day, I have no real memory of Ronnie.  I don't know what he looked like or anything else about him. Quite honestly, I don't want to have any memory of him.  My grandfather kept a ledger until my sister turned 18 years old, indicating every child support payment Ronnie missed.  He did this just in case Ronnie might try to come back into our lives at some point.  Daddy wanted to adopt my sister right away, but wasn't able to until I turned 14 years old.  Even though he wouldn't pay child support, and had no interest in seeing us, he refused to sign away his parental rights.  They were able to claim abandonment when I turned 14 and my dad adopted my sister and I right after this.

Ronnie has created so many painful ripples in my life because of his actions.  I have had a fear of abandonment my entire life.  I always thought that if my own father couldn't love me enough to be in my life, how could anyone else.   As soon as other people would start to get close to me, I would do something to run them off, proving again to myself that no one could possibly love me.  I have suffered from PTSD for years, although we didn't know that was what it was until recently.  A psychologist traces it back to the episode with the gun, and feel that this was the trigger to my fibromyalgia, which is often brought on by either physical or emotional trauma.

Ronnie died when I was about 25 years old.  My mother brought me his obituary, and it was as if I was looking at some stranger's death announcement.  I did learn that I have a half sibling, and I have no desire to meet this person.  But with his passing, I was finally able to let go of most of the pain that he had caused me over the years.  I realized that he had no hold on me anymore, and I was able to find a little bit of peace.

We need to be aware that everything we do in our life can, and does, affect those around us.  Sometimes, we don't even realize it.  But I think we each have a responsibility to try and make the ripples we send out positive.  You never know the kind of pain that an insensitive comment or action can cause another human being.  Treat one another with love and respect, and remember that we all create ripples everyday of our life.

I'm Tired of Being Responsible

I'm going to share something with you today that I'm not really proud of, but it is what it is.  I'm tired of being responsible.  Now, I don't mean that I want to go out partying, or go on a crazy shopping spree that I can't afford, or anything like that.  I'm tired of having to be responsible for everything that happens at home.  As you know, my husband and I are both disabled.  He is confined to a wheelchair, and he can't get out and do things the way that I can.  I also know that he would do it for me in a heartbeat if he could.  But, I can't help the way I feel.  There are days when I really resent having to take care of everything.

The last few days, I haven't been feeling very well.  But I have been on the go since 6 am, everyday this week.  I have had to run all sorts of errands, shopping, bill paying, taking the boys here and there.  I haven't been sleeping well and my knees are hurting so bad that every step is agony.  All I want to do is spend a couple of days off my feet, doing as little as possible.  But that just isn't possible.  Jack has basketball practice this morning, I have a few more errands to run while he is there, and then I have to go back and pick him up.  Once we get home, he has to jump in the shower, and then back in the car we go to take him to a friends house for a slumber party.

I try not to complain too much about the things I have to do.  It really doesn't do me any good, anyway.  When I do say that I don't feel up to doing the things I have to do, Dale gives me a handful of reactions.  Sometimes I get the Dale who tries to make me feel guilty with something along the lines of "Well, if I wasn't stuck in this wheelchair, I'd go do it myself, but I just can't."  I know that you can't, and I'm not asking you to do it.  I just want you to realize that I am disabled, too, and there are days when I can't push myself any further.  Another reaction that I get is passive aggressive: "Fine!  Just don't do it and we'll just starve, or they can just come and cut the water off!"  Or, insert whatever response you want into this.  I'm going to take care of it, I just want you to realize that sometimes, I feel just as bad, or worse, than you do!

We refer to chronic pain, fibro, and other illnesses like these as "invisible conditions".  You don't necessarily see that we have anything wrong with us.  I can understand that from people who don't know me.  I've actually gotten rather used to it, unfortunately.  But is it to much to ask that my family, who I am with day in and day out, remember that I have a chronic condition?  For the most part, my husband is very good about my problems.  He does what he can around the house, and quite often tells me not to get up, because he knows how bad I am feeling.  But the minute something needs done outside the house, he completely forgets that I may not be feeling up to it right at that moment.

Well!  I feel a little better, now that I've gotten that off my chest!  I will continue to do what has to be done.  I'll keep running all the errands that have to be run, and for the most part, I will do it with a smile on my face.  To be honest, I really don't have a choice in the matter.  But sometimes, you just have to let it all out, and I thank you for letting me rant and rave, even for a few short minutes!

Friday, March 30, 2012

Fibro Fog

I've spent a lot of time trying to figure out what to write about this morning, but every time I would start to get an idea it would either float away before I could really get hold of it ,or another thought would pop up, and I wouldn't even remember what it was I was trying to think of in the first place.  This isn't anything unusual for me, and the millions of others out there suffering from fibromyalgia.  While I'm sure it isn't the technical name, this inability to focus is known as Fibro Fog.

This is one of the most annoying parts of this condition for me.  I will be talking with someone and be in the middle of a sentence, and all of a sudden, I have no idea what I was talking about, or why I was talking in the first place.  I usually try to make a joke about it, or claim to have lost my train of thought, but once this has happened many times, people start to look at you a little funny.  There are times when I cannot think of the names of friends, or even common objects.  I know exactly what it is that I want to say, but the word just isn't there, and no matter how hard I try to think of it, I draw a complete blank!

I also loose things all the time!  I have learned to put things in the same place every time, but this doesn't always work.  There have been times that I have searched for my keys or my cell phone over and over, furious with myself that I can't find them, only to discover that I am holding them in my hand.  I have looked for my glasses for long minutes, only to discover that they are right where I left them - on top of my head!  You can't imagine how embarrassing this can be.  Like I said before, I've learned to make jokes about it, but it really isn't all that funny after the tenth or twentieth time it happens.

I now make lists all the time to keep me on track.  If I am going out to run errands, or pay bills, I have a list with me that tells me where to go, the order of places I want to go to, and the amount of money that I'm going to need at each place.  If I walk out of the house without the list, I am completely lost.  I then depend on my cell phone to call my husband in between each destination to tell me where I'm going next and what I am supposed to do when I get there.  And I hate that I have to do these things.

I always knew that there would come a time when I had trouble remembering things.  I watched my Grandfather deal with multiple infarct dementia, and my Grandmother developed Alzheimer's.  And while the issues that I deal with having "fibro fog" are not nearly as severe as the ones they dealt with, it sometimes feels very similar.  But I thought I had many more years before I began dealing with this.  If nothing else, it gives me a greater understanding to how they must have felt when simple things began to slip away.

If you have fibromyalgia, or you know someone who does, please understand that we do not do these things on purpose.  It is simply a part of the condition that we have to live with everyday.  Try to understand that we did not forget your name because you are not important to us.  We simply cannot access that information at that moment.  The next time we meet, your name will probably come to us right away.  If you notice us struggling to find a word, be patient.  It will come to us, and if it doesn't, but you can tell what we are trying to say, kindly give us that word.  And lastly, join us in trying to increase awareness about fibromyalgia.  More and more people are being diagnosed with this condition daily, and if you don't know someone with fibro today, you probably will soon.

Thursday, March 29, 2012

Sleep!

I have always said that nothing in this world could make me go back and relive my teenage years.  For me, personally, that was probably the most painful time in my life.  I experienced depression, bullying, loneliness, and the list goes on.  Recently, however, I have discovered one thing from those years that I would love to experience again.  What might that be, you ask?  It's one very simple word....SLEEP!

As a teenager, I was a world class sleeper.  My father used to be convinced that there was something horribly wrong with me because I did not hop out of the bed at 7:00 am every single morning.  During the week, it practically took dynamite to get me out of the bed.  On the weekends, it was nothing for me to sleep until 1 or 2 in the afternoon.  And this is what convinced my dad that I must be desperately ill.

Now, the fact that I didn't want to go to bed at all, probably contributed to my ability to sleep so late.  But once I fell asleep, I could stay that way.  How I miss those days!  Now, because of my pain, I stay up late into the night.  Frequently, once asleep, I wake up every one to two hours, and I hate it!  Sleep is elusive, and I am always looking for it, whenever and wherever I can find it.  Naps have become essential, and I have come to the conclusion that they are wasted on the young.  They just don't appreciate them the way someone who doesn't sleep well does.

For the last 10 years, I have had horrible problems sleeping.  I'm not alone.  Most people with chronic pain, including fibromyalgia, go without deep, restful sleep.  We have trouble falling asleep, and once we do, we can't seem to stay asleep.  Quite often, the pain that we deal with day in and day out, prevents us from getting the deep, restful sleep that so many people take for granted.  Most of us have tried everything searching for sleep. We try natural sleep aids like melatonin and valarian.  We take prescription sleep medicine such as Lunesta and Ambien.  We listen to soothing music, try self-hypnosis, and use sound machines.  None of it seems to help.

Most people know what it feels like to lose sleep occasionally.  They know how miserable they feel missing just a couple of nights sleep.  But they can't imagine what it's like to have sleep disturbances every single night.  We all need deep, restful sleep.  When you don't get it, just functioning becomes almost impossible.  Our bodies require that deep restorative sleep, and when you don't get it, every aspect of your life is affected.  You can't concentrate, you start to lose coordination, you become irritable.  And this hardly ever ends.

And this is why I would return to those teen years.  The thought of sleeping for eight straight hours seems like a fantasy anymore.  I dream about sleep, but of course, dreaming about it and doing it are two different things.  I can imagine burrowing down under my comforter and finding that perfect position.  My pillows stay cool, and my mattress is just the right combination of firmness and cushioning.  I have pleasant dreams, and I awake feeling refreshed and ready to face the day.  Ahh, to live just one night from my teens and sleep that peacefully again would be worth just about anything!

Wednesday, March 28, 2012

Hope

One of the things most precious in this world is hope.  Quite often, it can be difficult to hold onto if you deal with a chronic illness.  So many times during the struggle of dealing chronic pain, we feel a complete loss of hope.  We hope for people to believe us, and it doesn't happen.  We hope for relief from soul searing pain, and it doesn't happen.  We hope for a full night of restful sleep, and again, it doesn't happen.  But the one thing we can least afford to lose is hope.

I had almost given up on finding a doctor who could help me.  Luckily, I did find a doctor who believed me, but he was uncomfortable in prescribing pain killers that really worked.  He did prescribe some medication, but it just took the edge off my pain and allowed me to function most of the time.  Two years ago, Dr. S was going to send me to the pain management group at our local hospital.  The appointment was made, and I showed up full of hope that finally, my hope for less pain were going to be fulfilled.  I got as far as the initial assessment and mentioned that I had seen a pain management doctor once.  Everything ground to a screeching halt!  They informed me that if you had every seen any pain management doctor, they had to have those records, and my doctor knew that.

I explained to them that I had only seen this other doctor twice, and that all he did was prescribe medication to get me through until I had my back surgery.  The office manager told me it didn't matter; the doctor would not see me without those records.  I left the office in tears, once again, my hopes had been dashed.  Before I went home, I went to my family doctor's office to explain what had happened.  The girl apologized profusely for forgetting to request those records.  I signed a form giving the first pain management group permission to give out my records, and even watched as the form was faxed to their office.  I went home with hope that I would soon have another appointment with our pain management group in town.

And then, the waiting game began.  A month went by, and we didn't have the records.  Two months, three months, four months, and still no records!  At this point, I started calling the office.  The woman in charge of records told me that since it had been so long since they had seen me, the charts had been moved to storage and they rarely went to the storage facility.  In fact, she stated that they would only go when they had numerous requests.  I couldn't believe what I was hearing!  I kept calling their office, and I continued to be told the same story.  Finally, a year went by, and I gave up hope once again.

After two years, I got angry again, and some of the hope I had lost returned.  I called the doctor's office again and demanded to speak with the office manager.  She came on the line, and I must admit that I wasn't very nice - at first.  I threatened to contact an attorney to sue them for the runaround they had given me about MY records!  Much to my surprise, the first words out of her mouth were an apology!  She stated that the woman who had been in charge of records had been fired.  They discovered that she was telling just about everyone the same story she told me about my records.  I explained that they had only seen me twice, and she asked me to hold.  A few minutes later, she came back on the line.  She told me that my records were still in their computer system and that she would mail them to me that very day!

Finally!  I received the records a couple of days later.  I immediately took them to my doctor's office and they sent in a new request for an appointment.  Within two weeks, I got a call from the pain management clinic.  They told me that the doctor had reviewed my scant records, along with the records provided by my family doctor and they were going to accept me as a patient.  I had my first appointment two weeks later, and they have been treating me for the last three months.  They have helped me so much, and more importantly, they have renewed my hope.

Monday, March 26, 2012

I'm Back!

Hello, my loyal and faithful readers!  I hope that you have missed me as much as I've missed you.  I am sorry that I was gone for such a long time without an explanation.  My computer went on the fritz and it has been in the Computer Hospital for nearly 2 weeks.  It is now home and working perfectly, and I am so looking forward to getting back to sharing my life with you.  Tomorrow, I will have a new and, hopefully, interesting post for you.  It feels good to be back!

Friday, March 16, 2012

In Sickness and In Health

My husband and I celebrated our 20th wedding anniversary on New Year's Eve.  It hasn't always been easy, but we've made it when pretty much everyone else thought we were doomed for failure.  You see, Dale and I knew each other a grand total of 30 days when we got married.  If we were talking about some other couple, I would probably be at the front of the line, saying, "Are you CRAZY!  There is no way this will work, and you are making the biggest mistake of your life!".  But somehow, against the odds we have survived together.

About twelve years ago, Dale started having problems with his legs.  He complained that he was loosing the feeling in them and that it felt like there were helium balloons attached to his feet when he was walking.  We didn't think too much of it at the time, but then Dale started falling occasionally.  The falls began to increase in frequency, and I insisted that Dale see the doctor, who said he thought it was peripheral neuropathy, and that we would just keep an eye on things.

Not long after this, Dale developed a severe migraine type headache.  He kept telling me that he really didn't feel good, but wouldn't go to the emergency room.  Within a few hours, Dale's speech became impossible to understand.  He was showing all the signs of a stroke and I called an ambulance.  Once at the hospital, a battery of tests were run and Dale was admitted.  The doctor's told us that he had had a mild stroke.  Dale was having problems with both fine and gross motor control and with his speech.  He was also having trouble swallowing.  We worked with speech therapy, physical therapy, and occupational therapy, and he was soon able to return home.

Dale's legs continued to get progressively worse, and pretty soon, he couldn't walk at all.  That's when we got his first wheel chair.  For a man who spent 14 years in the army, and who had worked hard his entire life, that wheelchair was an admission of failure to Dale, and he got very depressed from it.  I let him have time to grieve what he had lost, and then the tough love kicked in.  I told him that feeling sorry for himself wasn't going to change things, and that he could learn to accept that he was the still the person I fell in love with, despite the chair, or he could sit there and feel sorry for himself all alone.  Pretty soon, he came to grips with this new part of his life.

As time went on, Dale had what we thought were six more strokes.  I learned to watch the signs and symptoms, and I knew when one was coming on before he did.  About two years ago, he had another one, and our small hospital here wasn't equipped to deal with it.  They sent him to one of the large hospitals in Louisville.  We were in for a lot of surprises!

The neurologist assigned to Dale's case did a thorough work up, including CT scans and MRI's.  Dr. Frank came in with the results and informed us that Dale had not had a stroke, and in fact, had never had a stroke! We were dumbstruck!  Dr. Frank explained that Dale had a hereditary condition called Spino-Cerebellar Ataxia.  Neither of us had ever heard of this condition before.  Dr. Frank explained that it usually hits in the later 30's or early 40's, which is exactly when Dale started having his problems.  In this condition, the cerebellum starts to slowly disintegrate.  This is the part of the brain that controls coordination, and this is why Dale lost the ability to walk, had the speech and eating problems, and was loosing his fine motor control.  The disease is progressive and there is no cure.

I asked Dr. Frank why it has taken so long for us to get the right diagnosis, and why other doctor's kept telling us that it was strokes.  Dr. Frank told us that the condition is pretty rare, and most doctor's don't look for it.  The simply see the symptoms which look like stroke symptoms so that's what they call it.  Because the disease is hereditary, there is a 50/50 change that our sons will have it as well.  When they are a little older, we will have them tested to see if they carry the gene.

So far, I am able to take care of Dale at home, although it isn't always easy.  Luckily, he is still able to transfer in and out of his chair by himself.  If he has something to hold onto, Dale can even stand, but he cannot take steps.  Writing even his name has become almost impossible for him, and he has to use a pen that is thicker than normal.  The speech problems come and go, and when it is bad, I can usually understand him.  Unfortunately, other people usually can't.  One day, Dale had to call our insurance agency.  He was having one of his bad speech days, and the person on the other end of the phone hung up on him.  But as she was hanging up, she said that it was just some old drunk.  I called them back and gave them a big piece of my mind!

It's not easy watching this disease slowly take away the man I married, and I am terrified at the thought of my boys having to go through this.  I know that there will come a time when I have to put my husband in a nursing home.  Because of my health issues, I will not be able to give him the care that he needs, and this just breaks my heart.  It isn't easy, but Dale and I take care of each other.

I live on both sides of the chronic illness issue.  I am both a sufferer of chronic pain, and a caregiver to another person with a chronic illness.  When I hear other people dealing with a chronic illness say that their significant other left them because they couldn't deal with what is going on, it just makes me furious.  I don't understand walking out on someone you love, just because the going gets rough.  Dale and I made promises to one another when we married to be there for better or worse, in sickness and in health.  We have honored these vows, even though sometimes we both think it would be easier to walk away.  No matter how sick Dale gets, he knows that he will always have me to lean on, and I know that I always have him.  And my heart breaks for those who don't have the love and support that I do.

Thursday, March 15, 2012

Tell Me How You Really Feel!


I’m going to warn you that I’m about to rant and rave, so if you don’t want to hear it, stop reading now!  I am worn out today and I am in a whole lot of pain.  I’m in the middle of a flare up of my fibromyalgia, and every muscle in my body hurts.  Last night, I woke up every two hours because of the pain.  According to my husband, at one point I started to turn over and let out a high pitched scream.  I’m tired of feeling this way.  And, as Peter Finch said in the movie Network, “I’m mad as hell, and I’m not going to take it anymore”!

The truth is, however, that I have no choice in the matter.  There is nothing that I can do to get rid of the fibro.  I can’t take some medicine and have it be cured.   I can’t wish it away; I can’t have it surgically removed.  It’s here to stay, and I am pissed off about it.  Fibro effects pretty much every part of my life.  First of all there is the pain.  Do you know how you feel when you start to exercise when you haven’t exercised in a very long time?  You get a really painful ache deep in your muscles and you are reminded of it every time you move.  This is the closest way I can describe fibro pain.  However, with the ache that comes from exercise, it eventually goes away.  The pain associated with fibromyalgia never goes away.

The pain from fibro is always there.  Some days are worse than others, but it never completely goes away.  When I get a flare up, it’s like turning the volume up on your stereo.  You start out listening to soft music in the background, and then all of a sudden, someone changes the channel to heavy metal and turns the volume up as high as it will go.  And, they took the volume knob away and you just can’t turn it down.  You just have to sit there and endure it until they decide to come back and turn the volume back down, and you never know when that might be.

I am so sick and tired of dealing with this condition.  I want my damn life back!  I hate not knowing how I’m going to feel from one day to the next.  I hate not being able to plan things more than a day or two in advance, because a flare up could hit at any minute.  I hate not being able to get a real big bear hug from my kids because it just hurts too bad to let them touch me.  I’m tired of not being able to wear a pretty pair of high heels anymore because they cause pain from my feet up.

I am tired of people looking at me and saying “How are you today?”, and I know that they really don’t want to hear the truth.  They really just want to hear the obligatory “I’m fine” so they can get on their way.  Sometimes, I look at people and say, “Don’t ask me how I am if you don’t truly want to know, because I just can’t fake fine today.”  I live with this day in day out.  Would it hurt someone to simply listen and give me a little sympathy?  I don’t want anyone to feel sorry for me, I just want people to care enough to hear the truth.

Believe it or not, I wouldn’t wish this condition on my worst enemy.  No one should have to spend everyday for the rest of their lives battling pain.  But would it hurt for people to try and understand?  I’m not asking you to cure me and I don’t want to hear that exercise will solve all of my problems.  No, it won’t.  Just take five minutes out of your busy day, and listen to me without judging me.  Trust me, it’s not going to kill you!
Wow!  That feels a little better already!  Most of us with fibro, or any other form of chronic pain get really good at stuffing our feelings deep down.  We try not to give people any ammunition to use against us, and believe me it happens!  We listen to people tell us to lose weight, start walking, change our diets, stop taking so much medication, and the list just goes on and on.  But, you can only stuff your feelings down for so long until things erupt.  Well, this was my eruption!  All I ask is that you try to put yourself in our shoes for just a little while.  Believe me, you will take those shoes off pretty darn quick.  Just remember that I don’t get to take

Wednesday, March 14, 2012

An Awkward Little Girl


Recently, I learned something about myself that I wish I had learned years ago.  I’ve talked about my birth defect in another post, and explained exactly what was entailed with that.  I’ve always had a few neurological impairments from this, but most of them were never all that troubling.  For example, walking a straight line is impossible for me.  If I’m walking beside someone, I either bump into them eventually, or I end up five feet away from them.

I also have some trouble with judging distances.  Do you know that obnoxious person at the stop sign in front of you, who waits to make a left turn until he or she has an area large enough to land a 747?  That’s me!  I am also very careful when driving, because I would flunk the field sobriety test stone cold sober.  If I try to walk heel to toe, I tip over… every.  single. time.  Not only that, I can’t do the one where they have you tilt your head back, close your eyes, and touch your nose.  If I don’t tip over from my vertigo, I miss my nose!  Luckily, this has never been an issue, and I am able to laugh about it.

Before I talk about the information I recently learned, I need to give you some background information.  During my surgery, the brain tissue protruding from my nose was simply cut off.  They really weren’t sure at the time what this tissue might have done, but they had no other choice but to remove it.  The doctor told my parents that I might have some issues from this, and I will get to that soon.

According to my mother, our minister and various teachers, I was a very interesting child.  By the time I was three, I could already read.  By the time I was four, I had already formed an opinion on the Viet Nam War.  Around this time my aunt, who was studying for her Ph.D in Special Education, used me as her guinea pig to administer standardized IQ tests.  According to the Stanford-Binet, I had an IQ of 158 at four years of age!

In school, I was always one of the smartest kids in the class, and in fact, my minister used to say that I was the only four year old adult he had ever met.  Sounds pretty impressive, doesn’t?  There was just one problem.  I was extremely immature socially.  I never fit in with the other kids, I never knew how to interact with them.  I always claimed that I simply preferred the company of adults, which is true, but the reason is that I had no clue what to do with people my own age.

Because I was so awkward, it was very hard for me to make friends, and the ones I did make, would often disappear after a few weeks, or months, if I was lucky.  I had a tendency to just blurt out what I was thinking, and I frequently got laughed at.  Children made me a target for their abuse, because it was just so easy.  I was quick to cry, and frequently spent recess by myself, watching all of the other girls playing jump rope, or swinging, wishing that I was one of them.  But I didn’t have a clue how.

Things just got worse the older I got.  By junior high school, I had developed social anxiety disorder.  People used to joke and say that the only thing I ever saw when I was at school was the tops of my shoes, because I never made eye contact.  I was still considered a cry baby, and people knew that if they made fun of me, they would get a reaction, which is what children of that age want.

It got so bad, that I developed agoraphobia during my first year of high school.  At 15, I quit going to school completely.  I rarely stepped foot out of my room, and the only place I would go with my parents was to my grandparent’s house.  Luckily, my mother got me into therapy immediately, and within a year, I was able to attend a boarding school where I graduated with my class.  I survived!

Now, back to the thing that I recently learned.  My mother and I were talking just a week or so ago.  I brought up how socially awkward I was, and that I never felt as old as the other kids my age.  I told her that I never fit in, and I could never figure out why.  My mother got very quiet for a few minutes, and then she told me that when I had my surgery, the doctor’s had warned them that this might happen!

I was completely shocked!  No one had ever told me this, and I was now even more confused than I was before.  My mom explained that they decided not to tell me that I had this “handicap” because they didn’t want me to be able to use it as an excuse.  They felt that if I didn’t know it might happen, then it wouldn’t happen.    The first emotion that I felt upon learning this was a flash of anger.  I thought that it explained so much!  I wasn’t just the freak that everyone decided to pick on!  To a certain extent, I couldn’t help the way I was.

And then, I was confused.  I asked Mom why they hadn’t gotten me in counseling or something as soon as they saw that I was having these sorts of problems, and she explained that at the time, no one thought of that as being an option.  Crazy people went to psychiatrists, not socially immature little girls.  Intellectually, I understood this, but the little girl in me still felt like she had been thrown in the deep end of the pool, and told to sink or swim.

Even now, as an adult, I still deal with a certain amount of social ineptitude.  I’m pretty good one on one, but I am terribly uncomfortable around large groups of people.  Small talk is easy for me, but I often don’t know what to say once you get into the deeper stuff.  And, I either try too hard and come off as annoying, or I don’t try at all and I can come off as very stand offish.  But now, I know that there is a reason for it.  I’m not using this as an excuse, but now that I understand it, I’m learning to compensate for it.  And I am no longer ashamed of that lonesome little girl.




I'm Just a Little Bit Crazy!

I am starting to accept the fact that I am a little bit crazy.  Oh, the signs have been there for years, but I just kept shutting my eyes to the truth.  Now, you have nothing to worry about - I'm not scary crazy - just a little kooky crazy, and sometimes, that isn't such a bad thing.  In fact, I think a little bit of crazy really helps you navigate a world that's just a little bit crazy too!

You may be wondering what signs I have found to confirm my self-diagnosis.  First of all, my children are forever looking at me and saying "Mom, you're crazy!".  Personally, I think that anything that comes out of the mouths of teenagers is suspect, but they just keep saying it.  For instance, we live a little bit out in the country.  There is one road that leads to my house that has cows in one pasture area and horses in another.  Whenever we drive past, I have to roll my window down, and yell HI! to the cows and the horses.  Many times, my barnyard friends will turn around and look at me.  I personally think that I'm being neighborly, but according to my sons, the cows and horses look at me because they know I'm crazy, too!

Another example of my slight bit of crazy is that I talk to myself.  I am always carrying on conversations with myself.  Most of the time, I am able to have these little talks completely in my head, but sometimes, I will talk out loud, and I don't even realize that I'm doing it!  Of course, my husband is constantly thinking that I am talking about him, because I tend to whisper these things.  I am always shocked when he says, "What did you say?" because I didn't even realize I had said anything out loud.  They say that talking to yourself is normal, unless you answer yourself.  Well, I will occasionally ask myself questions and answer them out loud, again, not realizing I have done this.  There's another sign!

The final sign is probably the craziest of all.  I have discovered that I feel guilty about my healthcare.  Earlier this month, I had an epidural caudal block to help with my lower back pain.  My doctor did everything possible to make sure that I got more relief from this one than I did from the first injection I received.  Sadly, this one didn't work nearly as well as the first one,  In fact, I'm already having pretty severe pain already.  Now, most people would simply think it didn't work.  My thought processes make me feel like I owe an apology to the doctor because the procedure didn't work.  I have already confirmed with friends that I am pretty much nutty as a fruitcake for feeling this way!

I have to remember that I am hiring the doctor to provide a service for me.  I think, however, that my tendency to be a people pleaser is leading me to these feelings of guilt.  And I'm pretty sure that when I see him again later this month, I will tell him that I'm sorry that this injection didn't provide that much relief, and like you, he will probably think that I'm crazy, too!

Tuesday, March 13, 2012

I Know You Care, But........

Dear Family and Friends,

It really does mean so much to me to know how much you care for me, but sometimes, you go about things in the wrong way.  I know that you love me, and that you only want to help.  I know that you don't mean to upset me, but to be honest, sometimes it really hurts for you to constantly tell me how to take care of myself.

Believe me, I have pretty much tried everything to make myself get well.  I have gone to physical therapy.  I have had surgery.  I have tried many different medications to control the pain.  I have tried changing my diet.  If these things had worked, I would be better, but the fact is that these things didn't work.  I am seeing my doctor regularly and he and I work together to try and come up with a solution, but so far, we haven't found one.

Hearing that walking a mile everyday saved your sister or aunt or best friend, is wonderful.....for your sister, or your aunt, or your best friend.  But the truth of the matter is that I'm not them!  What works for one person doesn't always work for another.  Don't you think that I wish I could go out and walk that mile every day?  Do you think I enjoy having to sit with my legs propped up or stay in bed most of the day?  Believe me, I am not enjoying the way I feel.

Perhaps, you think that I am just carrying on for the attention.  Well, I'm not.  My pain is real, and there are days when it is completely debilitating.  I would much rather receive attention for something positive.  I do not want you pity; I just want you to care about me and pray for me.  I would love it if you just came over to visit to take my mind off of what's going on with me physically.  I don't need you to fix me - if the doctor's can't fix me, then neither can you!  Just be my friends, hold my hand, and let me know you are here for me.

Perhaps, you get tired of making plans with me and having me cancel at the last minute.  Well, you aren't nearly as tired of it as I am!  I would give anything to do the things that I used to do.  I miss going out to lunch, or to the mall, or to church.  I miss seeing my friends and family socially.  You can't imagine how depressed and guilty I feel about this.  And you can't imagine how much it hurts me when the phone simply stops ringing because you have grown tired of trying to get me out of the house.  If you truly want to see me, grab some fast food and stop by my house.  It would raise my spirits more than you can imagine.

I know that you don't understand what's going on with me!  How could you?  I don't completely understand it myself.  Before I had this condition, I had no concept of being in pain 24 hours a day.  You can't understand it until you live it.  I hope and pray that you never do understand what I feel like, because I wouldn't wish this condition on my worst enemy.  I don't want anything from you except your love, understanding and compassion.

I am not the person that you used to know.  Being sick all the time changes you in many ways.  But if I had cancer, would you walk away from me?  And even though I am changed, the part of me that you first cared about is still here!  I am still your daughter, sister son, brother, mother, father, friend.  And I still need you in my life.

Love,
Each and every person living with chronic pain

Monday, March 12, 2012

The Bad Days

Today is one of the bad days for me.  These are the days that I really dread, the days when my pain rears its ugly head and nothing seems to help ease it.  And as intense as the physical pain is, the emotional pain from one of these days is almost worse.  Why?  Because it is days like this when I am really reminded of everything chronic pain has stolen from me.

As I have mentioned before, weather changes can wreak havoc on our bodies.  We can feel weather changes sometimes days in advance, and with the pain, often comes a wave of depression because we know how bad it can get.  Our temperatures are mild, but it is raining and boy, can I feel it.  Right now, I think that I am going into a flare up of my fibromyalgia.  Every muscle in my body hurts, especially the ones in my upper arms, and around my ribs in the back.  My armpits and my breasts hurt, and there is nothing that I can do, but ride it out.  My medication helps, but it doesn't get rid of the pain, it just takes it down a couple of notches.

I never know how long a fibro flare up is going to last.  It could be a couple of days or a couple of months.  With my fibro, I get huge knots in my muscles and I cannot bear to have anyone touch me.  Right now, I have a knot about five inches in diameter in my lower back.  I take a muscle relaxer, but it does nothing for it.  It really is depressing.  When I get like this, even my clothes hurt my body, and I can't stand even the lightest touch.  I really want a hug, but I don't let anyone give me one because it would cause such agony.

There are other symptoms that come with a flare up.  One is "fibro fog".  What the heck is "fibro fog", you may be asking yourself, and I'll tell you.  Fibro fog happens in your brain.  It causes you to have trouble concentrating; it effects your ability to remember things; it can cause you to forget where you were in a sentence and why you were even speaking; it can make you forget words and even cause you to stutter.  If someone interrupts me while I am talking, forget it!  I can't remember what I was saying, and I get really frustrated.  I also will sometimes get stuck on a word and say it four or five times in a row before I am able to keep going.  My kids and I joke around about it, but it is just so frustrating!

Being able to talk about what's going on is very helpful to me.  I know that my family gets tired of hearing about it, and so I try not to bring it up too often.  But I belong to a wonderful online support group, and I know that I can always go to them and talk about the things that are bothering me, and someone is willing to listen.  I know that I will never be judged because someone has experienced the exact same thing as me, and they get it.  I don't know what I would do without these wonderful people.

I usually try to write something in this blog that everyone can relate to.  Today, the pain wouldn't let me get past it.  If you are suffering through chronic pain, my heart goes out to you because I truly understand.  And if you know someone suffering with chronic pain, do not judge them.  Believe me, they hate what this thing has done to them far more than you ever could.  Really make an effort to listen to what they have to say.  It's a gift that some don't get very often.  Don't tell them that you had an aunt who had this or that, and such and such helped them.  We have tried it all, and we know what works and what doesn't.  Simply listen.  Quite often, that's all we need.

Sunday, March 11, 2012

Forgiveness

I've been thinking a lot about forgiveness lately.  Forgiving someone who has wronged you, in some ways,  is one of the hardest things to do.  It is so difficult to let go of the hurt and anger that we carry around with us, and we often nurture these negative feelings until they turn into a huge grudge.  But who are we really hurting when we do these things?  We hurt ourselves.

I am guilty of nursing several grudges over the years.  My biological father never paid any child support and never made an effort to see my sister and I after he and my mother divorced.  Once, he showed up at our house threatening to kill all of us.  When I was an adult, I learned that his new wife had been one of my nurses when I was 10 years old and had an appendectomy.  This woman was in my room constantly, and while I appreciated the personal care, even at 10, I was confused by it.  Upon my discharge, she put a letter to my mother in the discharge paper work.  She called my mother horrible names, and blamed her for not allowing my "dear, loving father" to see us.

For many, many years, I hated this man.  Because of his actions, I have spent years, terrified of abandonment.  I would be so horrible to boyfriends that they would break up with me.  I was able to comfort myself, in some twisted way, that I wasn't worthy of love and attention.  I would cry myself to sleep some nights, wondering what was so awful about me that my own father wanted nothing to do with me.  My mother remarried about a year after the divorce.  Gaylon Brown was my daddy!  He even adopted my sister and I because he loved us both.  But, the damage was already done, and I wasn't able to form a tight attachment with him because of my fear that if I got too close, he would run off and leave me, just like Ronnie did.

Did Ronnie know that I was carrying this huge grudge?  NO.  Was he affected by my feeling of hatred?  NO!  The only person that my anger hurt was me.  Deep down, I think I realized this, but I still couldn't let go of it. I allowed it to affect my entire life!  I carried around all the hurt and anger most of my adult life.  When Ronnie died, my mother showed me his obituary, because she thought that my sister and I should know.  And I added the anger of never being able to confront him to my grudge.

I have finally learned that forgiveness isn't for the person who wronged you.  Forgiveness is for you!  When you forgive someone, you give yourself permission to let go of all the hurt and anger that you have been carrying around inside you.  I once heard someone say that forgiveness is the act of admitting to yourself that you cannot go back and change the outcome of what has been done to you.  Once I was able to forgive Ronnie, and let go of everything, my feelings of hatred turned into feelings of pity.  I pitied this man because he never got to see what wonderful, loving women his daughters' grew to become.

If you are carrying any hatred for someone who has wronged you, forgive them.  Give yourself permission to let go of the grudge you are carrying around with you.  Forgiveness allows you to move forward in your life, and change yourself for the better.  Forgiving Ronnie was liberating for me, and I found a sense of peace that had been missing in my life since I was four years old.

Saturday, March 10, 2012

Selfish Isn't Always Bad

Selfish isn't always bad.  From an early age, we are taught not to be selfish, and to share our things with others. And this is a good lesson to learn, because we really should treat others the way we want to be treated.  However, not being selfish doesn't mean denying yourself of everything.  Some of us who deal with chronic pain on a daily basis worry all the time about being selfish.  We feel guilty about not attending an event that one of our children is involved in.  We feel guilty for canceling a get together with friends because we are not physically up to it.  And, we feel guilty for no longer being the person that we used to be.

Quite often, we will push ourselves far past our limits just to make sure that we are not letting someone else down.  And the result of all of this?  We end up making ourselves worse, and then we start feeling guilty again.  Well, I'm here to say that enough is enough!  It is high time that we all realize that being "selfish" and taking care of us is just as important as taking care of someone else.  For me, it isn't natural to take care of myself.  I try to make sure that I am there for whoever needs me, regardless of how I am feeling.  The end result of this, quite often, is that I push so hard that I have nothing left for anyone.  I will frequently end up in bed for days at a time because I just can't do any more.

As you all know, I have three teenage sons and a disabled husband.  They all need me very much, and I try to be there for them whenever they need me.  But, I am slowly learning that if I don't take care of myself, I am useless to others.  I am learning how to say no sometimes, because if I don't stop and take a breath, I'm going to be down far longer than I would have otherwise.  I am also learning that my husband and children are going to survive if they have to take care of themselves for awhile.

Do something special for yourself, because you deserve it!  Because Dale and I are both on disability, money is frequently an obstacle to some of the things I would love to do.  I am learning ways to pamper myself that don't cost a lot of money, and don't take a lot of time.  For example, one of the things that I enjoy doing is taking a long, hot soak in the tub.  I will light some aroma therapy candles in the bathroom, and take a book with me. (I also lock the door!  Even though they are boys, they will sometimes walk right in if the door isn't locked!).   If the water starts to get cold, I let some out and add some more hot water.  By the time I'm finished, I am far more relaxed than when I went in, and I am more able to give of myself.

So, let's all give ourselves a break and be a little selfish.  Figure out something you enjoy doing for you and do it.  Not only will you feel better, but the people around you will benefit as well.  Selfish really doesn't always deserve the bad rap that it gets!

Friday, March 9, 2012

The Cost of Bullying

There is so much in the news recently about bullying, and it is high time that it is truly being addressed.  Too many lives have been lost because we don't teach out children to be kind to one another.  There are those who say that kids will be kids, and that a little teasing never hurt anyone.  They couldn't be more wrong!  Children are committing suicide because of the pain inflicted on them by their peers.  Other children take all the abuse that they can, and then they show up at school with an automatic weapon.  This has to stop!

I know the pain of being bullied.  I know what it's like to cry yourself to sleep every night because of the cruel things that other children can say.  I know what it's like to be a 13 year old girl and think that death would have to be better than another day of hearing the vicious taunts of other children.  When I would say something about it, I was frequently told by adults that it was just teasing, or that I needed to develop a thicker skin.  But, it isn't possible to grow a skin thick enough to deal with that kind of pain.

As a child, I was different than a lot of the other children.  And kids form a pack mentality and hunt down those who don't fit in.  For starters, I was younger than most of the other kids in my grade because of when my birthday fell.  Because of this, I wasn't as socially mature as many of them.  I was also taller than most of the other kids in my class.  I was incredibly shy, and making friends wasn't easy for me.  When other kids would tease me, I didn't have a good comeback, I simply ran away crying, which gave them even more ammunition to use against me.

In between first and second grade, I was sexually molested by a couple of different people.  Like many girls who go through this, I turned to food.  While I didn't know it at the time, many girls will gain a lot of weight after something like this happens to them as a defense mechanism.  According to a therapist I saw many years ago, gaining weight is a way to make yourself appear less attractive, and therefore, less likely to attract molesters.  There is nothing worse than being the fat kid.  But, I would go to school, suffer the teasing from being fat, and then go home and eat more to try and comfort myself.  It is a vicious cycle that I am still trying to break today.

Their was a group of boys in our neighborhood who made my life a living hell.  I would have to deal with their bullying at school, and then come home and have to deal with it there as well.  They made fun of my mercilessly, insulting my body, my hair, my clothes, and my family.  To this day, I carry the scars that these boys left on my soul.  Now, I realize that their upbringing was poor, and that they really didn't have the loving, supportive family that I was blessed with.  And yet, just thinking about them can send me back into that tortured little girl even today.

As parents, we have a responsibility to do whatever we can to protect our children.  Yes, kids are going to tease each other, and we have to let our kids learn to deal with a certain amount of it.  But there is a world of difference between a little teasing and full out bullying.  And some of us have children who are bullies.  We have to recognize that in our children, and not make excuses for them.  We have to make sure that we help our children to develop empathy towards others, and if we see them causing pain to another person, we have to call them on it.  We need to develop the ability to be accepting of the differences in others, and pass that along to our kids.  Until we do this, bullying is going to be a continuing tragedy in our society.

Looking on the Bright Side

Dealing with chronic pain can, and does, bring out a myriad of different emotions in everyone who deals with it.  People express anger with the condition, confusion as to what is actually happening with their bodies, depression at the change in their lives.  But is there a bright side to having this condition?  I can only speak for myself, or course, but I do believe there is.

Now, "bright side" is probably not the best terminology, but for me, there have been positive aspects to it.  Sometimes the positive aspects can be very hard to find, but I assure you that they are there.  It has taken me a long time to find them, but I am trying to embrace the positives.  Staying angry all the time isn't good for anyone, and the stress from carrying that anger around only makes the pain that I deal with worse.  I had to try and find something positive about the situation.

For a long time, I was so angry about what had happened to me.  I thought that it was so unfair that I was having to go through all of this, and I spent many hours in tears over the loss of my old life.  I was angry with God, too, for allowing this to happen to me.  "Why me" became a mantra for me, and I couldn't find any answers.  But today, I am tend to think "Why not me?" far more often.

The more I searched for a reason, I learned that sometimes there are no reasons.  In life, sometimes things just happen, and we have to try and accept those things, and move forward from them.  Accepting my condition doesn't mean that I will stop fighting it, I am just learning how to live with it.

I am now more sympathetic to the suffering of others.  I used to work for a company which administered medicaid for the Commonwealth of Kentucky.  I worked in customer service and daily dealt with recipients.  Quite often, people would call with problems filling prescriptions, or complaints about the way they way treated by a doctor.  I am ashamed to admit it, but quite often I thought that these people must be exaggerating the amount and severity of pain that they had.  I also thought that anyone that concerned about pain medication must be a drug addict.  And then my journey with back pain began.  I started suffering severe pain every single day, and there was no relief in sight.  I understood what these people were going through and I was able to treat them with far more kindness and compassion than I did before.

Because I am in pain so often, I have learned to appreciate the small things in life.  Now, just being able to clean my house seems like a gift, because it means that my pain is at a tolerable level.  I feel joy when someone asks me how I am doing, because it shows me that they really do care about me.  I appreciate the time that I am able to spend with my husband and children, because there are days when I don't want to even deal with them.

I am also developing a true appreciation for the people in my life.  I belong to on-line support groups for both my chronic pain and my fibromyalgia.  It brings such comfort when someone asks me how I am doing, and I know that they mean it and really want to hear the truth.  I have developed a circle of friends that I wouldn't have met without these conditions, and they mean the world to me.  I also feel better when I am able to offer words of comfort to another person.  I don't know what I would do without my "cyber" family, and I would never have met them without my illnesses.  I am learning what it is to approach everyday with gratitude.

I will never stop fighting to find a cure to my condition.  I will not accept the fact that I am going to have to live the rest of my life in constant pain.  And yet, I am grateful for the experience of living this way because it has made me a better person in the long run.  I am learning what it means to face each day with gratitude and compassion towards my fellow man.


Thursday, March 8, 2012

Who am I Now?

Chronic pain changes your life in so many ways, and there is really nothing you can do about it.  Most of us go through a grieving process.  We grieve for the life we used to have; we grieve for the loss of friends and family members who cannot adjust to the person we have become; we grieve for the loss of the person we used to be.  I have been lucky in that the people who love me the most have never turned their backs on me and continue to love and support me.  Many are not that fortunate.

For me, the worst loss is very personal.  I am no longer the person I have always thought was me.  Chronic pain has changed my entire reality, and it is heartbreaking.  Many days, I do not like the person I have become, and I want the old me back all the time.  I can no longer participate in my children's activities the way I used to and I really miss that.  I can no longer work, and I miss that because I had a job that I loved.  I can't go to church very often anymore because there are too many steps leading into the building for me to get up on a bad day, and I can't sit in the pews for very long.  I used to be very involved in my church over the years.  I sang in the choir, led the youth group, and participated in our women's group.  My church hasn't turned its back on me, but when you can't be there, you don't feel attached anymore.

While I didn't do it often, I used to love to out to a club to go dancing and spend time with friends.  I also love to sing karaoke, and I can't do that anymore either.  Music and performing were always my first love.  I've been performing since I was a very young child.  I would organize the kids in the neighborhood and put on shows for our parents.  I also participated in community theater, both on stage and behind the scenes.  I can't do that anymore, and I feel like the creative part of me has withered and died.

I can't make many plans in advance any more, and because of this, I have lost friends.  I might tell someone on Tuesday that we would go out to lunch on Wednesday, and then have to call and cancel on the morning of the lunch date.  You can only cancel on people so many times before they quit calling to ask you to do things with them.  I can't go to the mall anymore, not that I ever really was a shopper, but I still miss it.  Looking forward to the future is hard to do when you don't know how you are going to feel more than a couple of hours in advance.

Traveling is almost out of the question anymore.  My sister and her family live about 6 hours away from me in Collierville, TN.  Her home is about half way between where I live and where my mother lives.  We will sometimes all get together at her house, but I can't really enjoy the visit because I am in so much pain from the trip to her house; and it takes until the end of the visit to get over it for the drive home again.  It just doesn't seem worth it most of the time.

Because so many things in my life have changed, I am trying to redefine myself.  This isn't easy to do when you lose so many important parts of yourself.  But even though I have lost so many aspects of who I used to be, some will always be with me.  I will always be a mother to my children, and while I may not be able to go to that basketball game, they know that I want to hear everything about it once they get home.  My children know that I love them, and that I am always there when they need a friend or a mommy.  I will always be a wife to my husband.  Because we are both disabled, there is always someone there who understands what the other is going through.

And writing this blog is helping to bring my creative side back to life.  I am able to have a voice again and connect with other people.  Hopefully, something I have to say or have been through will help you on your path through this world.  And, it allows me to connect with other people.  My relationship with others doesn't have to be gone, it is simply different now.  Slowly but surely, I am finding myself again, and I am so happy to have you join me on my new journey.

Teenagers!

I am the mother of three teenage boys who are 18, 16, and 14.  I am pretty experienced dealing with them, and I have come to the conclusion that my mother was always right!  She has always said that once a child turns 13,  said child should be locked away and let out again once they turn 25.  When I was a teenager, I thought that this was the most vile thing that I had ever heard!  Of course, my bad behavior wasn't my fault, it was hers!  There was no possible way that she could understand the things that I was going through, how could she possibly understand? She was OLD!

Today, now that I am a mother of teens myself, I frequently call my mom and apologize in general for everything that I ever did during my teen years.  I also ask her to remove the curse she placed on me.  You know the one:  When you grow up and have children of your own, I hope you have one just like you!  Funny thing about mother's...their curses usually work, and boy are they powerful!  And while she does sympathize with me, she has yet to lift that horrid curse!

Now, I know that this blog is about chronic pain, but if you have teenagers, you know that the two are related. I love my sons more than life itself, but there are times when I think that if I were to actually kill them, I would get off on either justifiable homicide or be found not guilty due to reasons of insanity!  (For those of you who are concerned, I would never actually kill my kids.....but I would fantasize about it!).

I don't know about your teenager, but I do know that mine apparently suffer from multiple personality disorder.  The child that I send to school in the morning isn't always the same child that comes home in the afternoon.  At times, my sweet, loving boys walk through the front door, and at other times, it is some demon child!  Sometimes, they are in a good mood and want to talk with me and tell me about their day.  Other times, the demon child walks through the door, throws books to the ground, retreating to their room with a resounding slam of the door!  If nothing else everyday is an adventure!

I was raised with just my sister, and had no real experience with boys.  Everyone has told me that boys are easier than girls, and I believe this is true to a point.  I always thought that girls were the only ones who were really effected by puberty, but this just isn't true!  Boys can be just as moody, and their temper seems to surge right about the time the testosterone starts to surge.  Two of mine have this nasty tendency to punch walls when the get angry.  The oldest one has had to have surgery to repair a fractured hand, and the youngest has had to have his hand xrayed for fear that he has broken something.  Do they ever learn that the only one this behavior hurts is themselves?  Apparently not, because they are both still hitting walls.

I do have hopes that this condition is temporary.  Every once in a while, I get a glimpse of my child, the sweet, loving little boy who used to crawl in my lap for a good cuddle.  And I am very blessed that all three of my boys feel safe talking to me.  They pretty much tell me everything, even when I would rather not know.  I believe so long as they keep talking to me, they are going to come through this evil world of teenager-hood.

My mother tells me that this doesn't last forever and to hang in there.  But I honestly believe that I have about ten years before I totally finish with this.  I remember about the time I turned 25, I realized that my mother knew far more than I could ever hope to know, despite my excellent education.  That really came as quite a shock at the time.  But, every once in a while, I actually hear one of my darling boys say something so sweet to me.  What is it that they say?  "You were right, mom.  I should have listened to you!".

Tuesday, March 6, 2012

Helping Those Who Truly Need It

There has been so much in the news lately about people abusing prescription drugs.  We all mourned the death of Whitney Houston, and wished that it had never happened.  We watched Dr. Conrad Murray be convicted in the death of Michael Jackson.  And last night, I heard a story about a doctor who is being tried for murder due to several deaths resulting directly from medication she prescribed.  Rehab centers are full of people who are addicted to legal, prescription medications.  All of these things are horrible, of course.  But the people who are suffering the most are those of us suffering from chronic pain.

Right now, I have a wonderful pain management doctor who is doing a fantastic job helping to control my pain.  But, like the fairy tale, I had to kiss a lot of frogs prior to finding this doctor.  Before being approved for my disability, I had no health insurance.  Luckily, my town has a wonderful free clinic which is staffed with volunteer doctor's, nurses, and office personnel.  I provided them with my medical records, including copies of xrays and mri's documenting my back problems.  I was very fortunate that they were actually willing to treat my pain.  One of the problems, however was that you saw a different doctor everytime you went to the clinic.

Once I started receiving medicare, I was able to find a doctor in private practice.  I started seeing a doctor, and I really liked him the first couple of visits.  Once my last prescription for pain medication from the free clinic ran out, I told my new doctor that I needed refills.  He then informed me that he had run a report on me, and could see that I was a drug addict, based on the number of doctor's I had seen in town.  I tried to explain that every time I went to the clinic, I saw a different doctor, but he would not listen.  He continued to berate me, telling me that people like me really made him angry, and that he was not a drug pusher!  I left the office sobbing!  I don't think I had ever been so humiliated, and needless to say, I never went back.

The sad thing is that my story isn't all that unusual.  People who truly suffer with chronic pain are being made to pay the price for those who are abusing the medication.  Doctor's have gotten afraid of prescribing opiates of any kind because they are afraid of the consequences.  Something has to be done to protect the patients who truly need the help, and the doctor's who treat them.  In addition, we have to find away to make taking prescription drugs less appealing to the addicts.

Unfortunately, I don't have the answers to any of these problems.  One thing that I do know is that everyone has the right to be treated with dignity and respect.  If a doctor feels that a patient truly is a drug addict, of course, they should not prescribe any medication to them.  However, even the addict deserves to be treated with respect, and the doctor has a responsibility to offer solutions to the patient with the drug problem.  We must all work together to try and come up with solutions to this issue.  And we have to teach our medical professionals that not every person seeking pain control is looking for that high.  We just want to feel like normal people and be able to function in our daily lives.

Monday, March 5, 2012

This and That

The last week has been pretty hectic, and I haven't had a lot of time to write anything, and I am finding that I really have missed it!  This post isn't going to be about anything specific.  It's just going to be about what has been going on in my life and in the world around me.  It took me a few days to get over my injection, but by Thursday, I was feeling much better!  I was able to get out and run a lot of errands, and I even went and got my hair cut!  It was nice to actually go and do something for myself.

We had really severe weather last week.  On Wednesday, the first set of storms hit us and we spent most of the day under tornado watches and warnings.  Several towns near us were hit, and suffered devastating damages.  And then on Friday, the really severe weather came through.  Bardstown was right in the path of many of the storms, and we were again under tornado warnings.  Several towns in Kentucky suffered more damage, including towns which were hit by Wednesday's storm.  And then just north of us, in southern Indiana, several towns were absolutely wiped off the map by massive tornadoes.  There was a devastating loss of life, and my thoughts and prayers are with those who lost so very much.

I think one of the saddest stories in all of this happened in a small town called Pekin, IN.  An entire family lost their lives during the tornado.  A young woman of 20, her boyfriend, and 3 young children were directly in the path of the storm.  After it passed, the young woman's father went to check on them.  As he was driving up, he could see that the trailer park where they lived was completely obliterated by the storm.  Soon, he found the bodies of his daughter and two of the children.  A short time later, the body of the boyfriend was discovered.

Other rescue workers found the third child, a little girl named Angel, lying in a field.  At the time, no one knew who she was or who she belonged to.  Angel was rushed to the local hospital, and once her condition was stabilized, she was sent by helicopter to Kosair Children's Hospital in Louisville, KY.  Once there, her identity was finally discovered and her family was able to gather at her side.  Unfortunately, her injuries were so traumatic that her poor grandparents had to make the tragic decision to remove her from life support, and, as they said, allow her to join her mother and the rest of her family in heaven.  Angel had gone home.  And, like so many other people around the country, I shed tears for this poor family who lost so much.

Today, my husband was supposed to go for a check up with the VA clinic in Ft. Knox, KY, which is about 30 miles from where we lived.  Dale is confined to a wheelchair, so it does take some planning for me to take him anywhere.  Luckily, our children are out of school today, and my son, Matt, was going to go to the appointment with us so that he could pick up the wheelchair and put it in and take it out of the car.  But then, Dale woke up with a fever.  He decided that he just didn't feel up to getting out in the cold to make the trip.  Dale is feeling very weak, and he said he just didn't feel like he had the strength to get himself down the steps from our house leading outside.

I hate to admit it, but I'm really glad that we aren't going.  I'm feeling rather sore today, and I was not looking forward to the drive.  I did feel a bit selfish about feeling this way, and I didn't mention it to him.  I was relieved, tho when he decided he didn't want to go.  Doesn't that sound bad?  I don't want him to be sick, of course, but I still feel the way I do.

I'm sorry that this is so short, but I haven't had time to really sit down and think out anything "inspirational", or even all that interesting!  But, to you, my loyal readers, I didn't want you to think that I had forgotten about you!  I don't know how much you are getting out of my posts, but I am getting so much from writing them.  I feel like I am finally fulfilling one of my childhood dreams of becoming a writer!

Thursday, March 1, 2012

Nothing is Ever Easy

Sometimes it seems that nothing is ever easy!  One of the treatments that I get for my lower back pain is  caudal block epidural injections.  The first one that I had actually went very well.  While getting the injection isn't pleasant, the relief that I felt almost immediately was wonderful!  I felt a lowering of my pain level right away, and by the time I got home, I was almost pain free!  I couldn't believe it.  For the first time in years, I actually felt good.  Over the course of the next month, I was able to do things that I hadn't been able to do in ages.  I still had to pace myself, but it was such a blessing.

So, when I had to go back for another injection the day before yesterday, I was actually looking forward to it.  The process starts with basic vital signs testing, such as blood pressure, temperature, and that sort of thing.  You are then taken to an exam room, and you meet with the doctor for a regular visit.  He asks how you are feeling, and how the previous injection worked.  Because the injection itself is quite painful, an IV is started so that they can give you some sedation prior to the procedure.  This part isn't always easy for me, but I'm used to it. I'm one of those people with terrible veins.  Mine are tiny, deep seated, and they roll.  It takes forever for this, and I actually feel worse for nurse trying to put the IV in than I do for myself, because I go through it all the time.  Once the IV is put in place, you are taken to the procedure room.

This room is very much like an operating room.  Once you are on the table on your stomach, heart monitors are attached.  The doctor comes in and uses xray to determine exactly where to inject the medication.  I have mine injected into the tail bone area.  There is no nice way to say this, but mine goes in right above my butt crack, excuse the language, please!  Before he starts the actually injection, the doctor injects some numbing medication in the area.  And then you receive the epidural injection.

Everything started off normally.  We were all chatting and actually having a really nice time.  Because of the sedating medicine, everything seems really nice, and you don't feel at all self conscious about having your naked behind stuck up in the air for all to see!  But as soon as he started the actual epidural injection, I could tell that something seemed a little different.  My doctor gave me more sedating medication this time, because he hadn't give me quite enough the first time.  But this time, it was even more painful, and there were a couple of times that I thought I was going to jump off the table.

My doctor explained that he was putting in more of the medication this time in an attempt to get it further up into my spinal canal, and also to try and get it to last longer this time.  The pressure from this was very intense, and I didn't think I was going to make it through it.  The medication completely deadens the area from about my belly button to my buttocks.  Eventually, the lowest area goes back to normal, and you stay deadened to the area where the injection was put in.

After it was over, I was helped to a wheel chair and returned to my room, where I would recover from the anesthetic for 30 minutes.  After about 20 minutes, the nurse told me to call my ride to come and get me.  Then, it was time for me to get up and walk a bit.  This is when my problems started.  Almost as soon as I sat up, I realized that I had no feeling in my legs, with the right leg being much worse.  I could move my legs, of course, I just couldn't feel them.  With two nurses supporting me, I stood up, and immediately started to fall to the right!  They put me back on the stretcher and said that I would probably just need a little more time, and that this sometimes happens, and not to worry about it.

About 10 minutes later, they came back again so that we could give it another try.  I could tell that the numbness in my right leg was more intense than before, but I wasn't too concerned about it.  When they got me up this time, I was able to stand.  With the nurses support, I stood there for another minute, and then they told me to take a step or two.  Well, I've been walking sine I was one year old, and I couldn't figure out what to do!  I was actually having to think about how to take a step.  Finally, I was able to swing my right leg forward, but as soon as I shifted my weight from my left leg to my right, my right hip gave way.  The nurses had hold of me, and put me back on the stretcher again.

This happened a few more times.  The office closes at five, and it was now five thirty.  I still couldn't hold myself up at all on my right leg, and we knew that there was no way I could get into my house because I have to walk up three steps.  It was now 6:00, and I felt so bad that I was keeping them all there so late after they should have been home.  I was apologizing, and they kept telling me not to worry about it.  But they couldn't let me leave with no way to get into my house!

Because my left leg was supporting me with no problems, I decided that I would be able to get up those steps with the aid of crutches.  My neighbor who picked me up said that he had a pair at his house which I could use.  When the nurses returned, with the doctor in tow this time, I shared my idea with them.  They had a little conference out in the hall, and everyone decided this would work.  The doctor then explained to me again about using the extra medicine, and said that it was just going to take longer for it to wear off.  With the help of three people, we got me out to the car and on the way home.

Using the crutches worked, and I was able to get into the house.  With the help of my sons, I would periodically try to walk, with no luck.  Around nine, I fell asleep, probably from the leftover anesthetic in my system and the stress of the day.  I woke up around 10:30 and tried to stand.  This time, my right leg would hold me up, and with the use of my cane I was able to walk.  I couldn't get back to sleep after my nap, so I would periodically try to walk by myself.  Finally, around 1:00 am, I was able to walk on my own.

This was a really scary experience!  The only residual side effect has been really severe pain in my right hip, and added pain at the injection site.  However, the pain in my lower back is better.  I go back in a month for another injection, and I'm not looking forward to this one at all.  I'm really hoping that the doctor uses a little less medication the next time so that I'm not there all day again!  Like I said, nothing is ever easy!