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Tuesday, February 28, 2012

Taking the Unknown Path

I had to go up to our hospital today for my annual mammogram.  In the waiting room, the TV was playing a motivational type video with soothing music and nature scenes.  Overlaying the pictures were little motivational sayings.  Most of them were pretty cliche, others a bit on the corny side.  But one of these saying really spoke to me.  I'm going to paraphrase it because I don't remember it word for word.  This is the gist of it: difficulties come when we take the way we don't really prefer; but sometimes we need to take this least preferred path in order to grow.

It brought to mind the Robert Frost poem about taking the road less traveled.  I can only speak for myself, but I tend to continue doing things the same old way, even when I know that the outcome isn't always the best.  The beast you know is often better, or at least more comfortable, than the one you don't.  But why is it so hard to try something new?  Often we are afraid of the outcome.  We don't know if we will succeed or fail.  I tend to be something of a perfectionist.  I have often shied away from new endeavors because I know that I won't be very good at it.

I wonder how many things I have missed out on because of this fear of the unknown?  I quit piano and guitar lessons as a child because I couldn't seem to get the hang of it at first.  I changed my major in college from theater arts to elementary education all because I couldn't get the hang of sewing in a shirt in costume construction.  I didn't attend Juliard when I was accepted because I was afraid of living in New York City by myself at the age of 17.  I know that all of us have made these kinds of decisions in our lives because the unknown was far more difficult than the way we usually did things.

Lately, I have decided that I am going to try doing things that seem difficult to me.  For instance, starting this blog was a big leap for me.  I have always enjoyed writing.  I have written journals, short stories, and poetry all my life.  I even attempted a novel as a teenager.  But I have never shared any of this with anyone.  Why?  Because I was afraid that it wouldn't be good enough and would be judged harshly.

I said that I started a novel as a teenager.  Back in the stone age, before word processors and computers, I had a very old, very heavy Underwood portable typewriter.  Every night, I hauled that thing out after doing homework and spent time working on My Novel.  And every night when I was finished, I would hide the pages away.  Apparently, I wasn't very good at hiding things.  My little sister had found my hiding place, and every day was reading the next chapter of my very cheesy teenage love story.

After I had written about 50 pages or so, I realized just how cheesy this "novel" was and simply quit writing it.  I thought that no one would like it, and if I thought it was cheesy, so would everyone else.  And I thought that if anyone knew about it, I would be laughed at.  Well, I found out years later, that my little sister apparently thought that this was one of the best things she had ever read.  She went to mom and confessed that she had been reading it, and was so upset that she wouldn't ever know what had happened to my young protagonists.  It may have only been my little sister, but someone loved my writing and was disappointed at not being able to find out how it all came out in the end.

And so, I finally decided to take that road less traveled and jump off that cliff into the unknown.  I started this blog and decided to put myself out there.  I hope that you are enjoying reading about what I'm writing.  I know that I am enjoying the process of writing it.  And I also know that doing the difficult thing has been so worthwhile to me.  Look into your own life and see if you can think of a road you wish you had traveled down, but decided to stay on the well worn path.  Try and do something for yourself that, on the surface, may seem difficult and a little frightening.  If you are like me, you will find that the rewards are greater than the fears.

Sunday, February 26, 2012

Family Members

I belong to a pain support group on Facebook, and quite honestly, these people have become so important to me.  They build me up when I'm down, and celebrate with me when I have successes.  I am able to go there and talk about my deepest, darkest fears and I know there is always going to be someone there who has dealt with what I'm going through, or who can at the very least, lend a sympathetic ear.  I have truly grown to love the friends that I have made in this group, and feel blessed to have them in my life.

One thing that I frequently hear, however, is that some members get no support from their family members.  I'm not talking about distant family, like aunts and uncles or cousins, but immediate family members who see the struggle that they go through day in and day out.  I am very fortunate that I don't have to deal with anything like this.  My husband and children are very understanding and do what they can to help me when I truly need it.

I just can't imagine watching someone struggling with debilitating pain, and then turning around and making jokes about it.  I can't imagine watching someone trying to function the best they can and then telling them to hurry up, or do it better, or do more than they possibly can.  The lack of compassion that some sufferers of chronic pain have to deal with is heartbreaking.

I understand that some people deal with fear and helplessness by cracking jokes.  And, I firmly believe that humor helps to deal with a difficult situation.  But there is always a time and place for it.  I can make some pretty self deprecating jokes about my condition, and my husband and I both gently tease each other about our conditions, but it is always done in a spirit of love and without the intention to cause the other one more pain.

I don't understand intentionally hurting someone we love when we see that they are hurting already.  The emotional pain from this is almost worse than the physical pain.  People with chronic pain deal with depression on a daily basis.  Being told that we are worthless, or lazy, or faking it only results in making both the emotional and physical pain more severe.  It also increases the amount of depression we already feel.  There is no excuse for this kind of treatment.

I also know that many people with chronic pain have watched their spouses walk away from them and the marriage because they can't deal with their partner being in constant pain.  Of course, living with chronic pain changes you.  You can't do the things you used to be able to do.  You feel helpless and even hopeless at times.  But, when my husband and I got married, we made a promise to stick together through sickness and health.  And we do!  My husband's condition came first.  And even though there were times when I thought that it was too much to bear, I never once thought about walking out on him.

Very often, for me at least, it's enough to hear that someone cares.  I don't know that I could get through this without the love and support of my family.  It breaks my heart to know that so many others don't get this support.  If you know someone with chronic pain, please don't belittle them.  Don't walk away because they aren't the person they used to be.  Try to put yourself in their shoes and imagine what it must be like for them.  Believe me, we beat ourselves up enough on our own.  We don't need someone else to do it too.

Friday, February 24, 2012

My Pride and Joy

I am the mother of three teenage boys and I am so proud of each one of them.  Chris is 18; Matt is 16; Jack is 14.  They are all bright boys and they have so much potential.  They are all strong individuals, and sometimes it's hard for me to believe that I raised each one of them.  They have unique personalities and outlooks on life, with individual strengths and weaknesses.  I wouldn't trade any of them, at least most of the time!  That, of course, is a joke.

Chris is the oldest and probably the one that I worry about the most, although if you were to ask him, he probably thinks I worry about him the least.  Whether most parents will admit it or not, there is always something special about your first born.  This is the child that you first started having dreams about, thinking about who they would become as they grew up.  Chris will always be my first baby, no matter how old he gets to be.  As an 18 year old, he believes that he is smarter than I could ever possibly be.  And even though I remember thinking like this, it is so hard to sit back and allow your child to make the mistakes that he or she must make to grow into an adult.

Chris has always been a kind, compassionate child.  When he was in kindergarten, his teacher told me that in all her 25 years of teaching, Chris was the most compassionate child she had ever had the pleasure of teaching. This made my heart swell with pride for my little boy.  The teacher told me that there was a little boy in the class that year who was severely handicapped.  The child was confined to a wheelchair and was what we used to call profoundly retarded.  The boy had an aid who went to school with him everyday, and took care of all his needs.  Most of the other children in the class ignored the little boy.  After all, it isn't a lot of fun to play with someone who can't play back when you're five years old.  But Chris didn't ignore this little boy.  He made a point of trying to include him in class activities, would sit by him at lunch, and would spend recess with him.  I was, and still am, proud of my son.

Chris has always been an incredibly bright boy, and was placed in the gifted program at his school.  He competed on the academic team, and in the fifth grade, he won a citywide geography bee.  Chris was also able to meet President George W. Bush because of a creative writing piece that he completed in the third grade.  But, as time went on, Chris started to have problems in school.  I kept telling the schools and his doctors that he had ADD, but they kept telling me that he was just an active boy.  They were all wrong.

Chris managed to graduate from high school, but his grades weren't good enough to get into a four year college.  We made the decision that he would start out at a community college, get his grades up, and then move on to a four year school.  But the pressures of college and living on his own for the first time proved to be too much for him, and he left school just a couple of months into it.  Right now, Chris is working full time, and is planning on going back to school next year.  We are working with our doctor to get him evaluated for adult ADD, and he has started taking an antidepressant to deal with other issues.  Chris is also starting to realize that I know a little more than he has been willing to give me credit for in the past.  I know that he is going to be able to get a handle on the issues he is dealing with, and will go on to succeed.

Matt is my 16 year old and is probably the most like me out of my three boys.  He is more introverted than his brothers, and much more interested in academics.  From an early age, we've known that Matt was incredibly bright, and he has proven us right many times over.  He was placed in the gifted and talented program in sixth grade, and has always made excellent grades.  Since about the third grade, I've told him that next school year is going to be harder, and he would have to start studying.  Matt is a junior in high school right now, and I'm still telling him next year will be harder and he will have to start studying.  He just laughs at me now.

Out of my boys, Matt has always been the most sensitive, and the ninth grade proved to be so very hard on him.  On one of the first days of school, Matt fell coming down the bleachers at school.  The nurse looked at his foot and ankle and told him that he was fine.  When I picked him up from school, he could barely walk to the car.  I took him to the ER, and the xrays showed that he had fractured his foot and severely sprained his ankle.  We were starting to see signs of social anxiety disorder in Matt, and his fear of talking to people kept him from saying anything to his teachers, or asking to go back to the nurse.

Matt stayed home from school for a couple of days, and when he returned to school, he fell on the bleachers again while trying to come down them on his crutches.  Matt wouldn't ask his teachers to let him prop his foot up, or ask for help carrying his backpack which weighed close to 50 pounds with his books in it.  I kept calling the school, begging them to help Matt.  And they kept telling me that he just had to ask.  No matter how many times I explained that he wouldn't ask, they wouldn't do anything to help him.  The orthopedic surgeon treating him decided that it would be better for his foot if Matt stayed home and let it heal.  We arranged for a homebound tutor, and this worked.  But when it was time to return to school, Matt had a complete breakdown.

He was out of school for six months.  I got Matt into therapy and he was diagnosed with severe depression, social anxiety disorder, and agoraphobia.  When it was time to start transitioning him back to school, I worked closely with the district psychologist.  A meeting was arranged at the school, and it took five adults to get him into the school.  It was at this meeting that his guidance counselor apologized to me.  She said that she really had no concept of how bad things were with Matt.  Slowly but surely, we got Matt back into school.  Matt completed a years worth of class work in three months, and was able to start the next school year as a full sophomore.

And now, you couldn't tell that he ever had a problem.  Matt is taking advanced classes and is carrying a 4.3 grade point average.  He scored a 33 on his ACT, which was the highest in the school!  Today, Matt is already researching colleges and is going to apply to several Ivy League schools next year.  We couldn't be more proud of him!

That brings me to my baby, Jack.  There is nothing like your baby!  Jack is 100% boy, and has more energy in his little finger than I have in my whole body.  Jack is athletic and loves to play just about any sport, but his favorite at the moment is basketball.  School has never been the most important thing to Jack, but he is just as smart as his brothers.  This year, he has really started to work hard in school.  Not too long ago, he told me that he has watched what Chris and Matt have both done, and he decided that Matt's way is better.  Right now, Jack has all A's and B's.

For the most part, Jack is a happy-go-lucky kid.  He makes friends easily; he is quick to laugh and he seems to find something funny in just about everything.  Jack has a great sense of humor and uses it to get himself out of trouble.  He learned pretty quickly that if could make me laugh, I tended to go easier on him.  So what flaw does Jack have?  He has a very short fuse, and I think that comes from being the youngest in the family.  Unfortunately, Jack loses his temper very easily, and this scares me somewhat.  We have had to have his hand xrayed more than once because Jack lost his temper at someone and punched a wall.  So far, he hasn't broken his hand!

Chris especially knows how to push Jack's buttons, and he does it just for fun sometimes.  The two of them fight like cats and dogs and it has just about driven me crazy.  On Christmas morning, the two of them got into it this year.  Jack had gotten a video game for Christmas, and Chris asked if he could play it.  Jack told him no, it was his present, and he wasn't going to share right that moment.  Chris called Jack a name, and the next thing I knew, the two of them were restaging the Ali-Frazier fight.  By the time I got them separated, Jack had a bloody lip and Chris had a black eye.  I keep telling Jack that one of these days, he going to pick on the wrong person, but he just laughs at me.  And no matter what, he will always be my baby!

For all their faults and failings, I feel so blessed to have these three boys in my life.  They have brought me more joy than I ever thought possible.  Being a parent is the hardest job in the world and the most rewarding.  I wouldn't trade my time as mother to Chris, Matt, and Jack for all the money in the world.

Thursday, February 23, 2012

Dealing with the Rough Days

One of the things that goes along with chronic pain is learning how to deal with the rough days.  This has been one of those days for me.  I could feel my back pain revving up last night.  I tossed and turned all night and just couldn't get comfortable.  When my alarm went off at 6 am, I felt like I had been beaten with a baseball bat!  Almost as soon as I woke up, I took my pain medication and started praying that it wouldn't take too long before it kicked in.  I knew it was going to be one of those days.

I could also tell that bad weather was moving in.  I've had the ability to predict the weather for years.  I started off with my knee, and has now moved into most of my other joints.  Nowadays, my back is usually the best predictor of bad weather.  It doesn't even have to be cold weather.  I can predict rain, snow, wind, any type of change.  I wish I didn't have this ability, but what are you going to do?  We have thunderstorms predicted for tonight, but I could have told you that yesterday.

Most of my day has been spent trying to get comfortable.  I have moved from my bed to my recliner several times.  I've tried walking around and lying down.  I've tried a hot soak in the tub and using my heating pad.  I've taken my pain medicine every time I was allowed to, and all any of this has done is take the edge off things.  Right now, the pain in my back and hips is almost unbearable.  Nothing seems to be helping.

I had promised my 16 year old son that we would go practice driving every day this week, but something has gotten in the way each time.  When he got home from school, the first thing he asked was if we could go out for a drive.  I told him that I just couldn't again today because of the amount of pain I was in.  He said that he understood, but I could tell by the look on his face that he really didn't.  So, we got in the car and drove around the neighborhood three or four times.  I thought I was going to die from the pain, but I didn't let him know that.  The happiness he got from it was worth it to me.  This isn't my normal way of dealing with the rough days, but I'm glad I did it today.

Wednesday, February 22, 2012

Have a Little Faith

I know a lot of people who deal with chronic pain, and one thing that I hear quite often is "Why is God doing this to me?".  In fact, there have been times when I have wondered the same thing.  I'm a good person.  I try to follow His commandments. I love my family and friends, and I try very hard to love my enemies.  I have never intentionally hurt anyone (I don't think that the fights my sister and I had as children count!), and I do my best to forgive those who have hurt me.

This is something that I have prayed and meditated on.  And this is the conclusion I have come to.  God hasn't done this to me.  The God that I know is a God of love and he doesn't punish His children.  Sometimes, things just happen.  I don't have all the answers, I just know what I know.  I believe that everything thing has a purpose, and sometimes, we don't know what that purpose is.  We just have to have faith that things will work out in the end.

I have always believed that everyone has a purpose in life, and for a long time I searched for my purpose, but I couldn't figure out what that purpose was.  I was just so ordinary.  I always thought, in the back of my mind, that I was meant for greatness.  I have been singing almost before I could talk, and for a long time, I was convinced that I would be a world famous performer.  That didn't happen.  There was even a time when I thought that I was meant to be a minister, and that didn't happen either.

I prayed and prayed, begging God to tell me what my purpose in life is.  And then, one day, I got my answer.  Because of me, thousands of babies are alive today.  I was just a tiny baby myself when my purpose was fulfilled.  I've spoken about this before, but I believe with all my heart that my purpose was to be saved from my birth defect.  When I was born, there was something protruding from my nose.  The doctor's told my mother that it was a polyp and easily repaired.

Shortly after my birth, I was sent to see an Ear, Nose and Throat doctor.  They took xrays of my head, and then my mother and I were taken to an exam room.  The doctor told her that he would be in in just a minute or two.  He finally showed up an hour later.  The tissue coming out of my nose was not a simple polyp; it was part of my brain.  I was born with a birth defect called an encephalocele.  This birth defect is a form of spinabifida.  In my birth defect, the covering of the brain doesn't completely come together.  Mine allowed brain matter to come through the opening, down through my sinus cavity, and out one of my nostrils.  This was a Big Deal.

At the time, there were only two hospitals in the country attempting the surgery to fix this problem.  One was Sloan Kettering in New York City, and the other was Barnes Children's Hospital in St. Louis, MO.  Because we lived in Arkansas, my family chose Barnes.  That afternoon, we were on our way to the hospital.  As I said in my previous post, the neurosurgeon told my parent's not to get too attached because every baby who had the surgery previously either died or had severe brain damage following the procedure.  Luckily, I come from a family with a powerful faith in God, and they started sending up prayers immediately.

They performed the surgery the way they always had.  I have a scar that runs from ear to ear across the top of my head.  Once they opened me up, they put a piece of plastic is the hole, and simply cut off the tissue that was hanging out my nose.  It's more complicated than this of course, but I'm not a medical professional, and this is the way things were explained to me.  Almost immediately after the surgery, the primary doctor left for a conference in Europe, leaving his resident in charge of my care.

Within hours of the surgery, I spiked a fever of 106.  This was the pattern they had seen with all the other babies.  I was packed in ice in the hopes that they could bring the fever down, and lessen the chances of brain damage or death.  But this resident had another idea, and asked my parent's if he could take me back into surgery.  He told them that it was possible I would die either way, but this gave me a chance.  Once in surgery, the doctor removed the plastic from the hole, and replaced it with a bone graft that he took from my forehead.  This worked!  Now, they would know that I had gone into rejection from the foreign substance of the plastic.  Replacing it with my own bone stopped the rejection process.

I was the first baby to survive the surgery perfectly normal!  There was even an article written for one of the major medical journals documenting the procedure.  And I was told that a doctor came over from Japan to see me and to study this new procedure.  After 6 weeks in the hospital, my parents were able to take home the baby they were told not to get attached to, and raise her like any other normal baby.  Because of this doctor, and me, thousands, if not millions of babies around the world born with this particular birth defect are able to live normal lives.  The procedure is pretty routine now, and instead of opening the skull, they are able to go through the sinus cavity itself, by making a small incision behind the upper lip.

This was my purpose in life. God didn't "do" this to me.  It just happened.  But He was able to use the doctor and me to save so many other children.  I don't know why we suffer from chronic pain, but I do know that we aren't being punished.  Some things in life just happen, and we don't always know why.  But I do know that God doesn't want us to go through this.  I know that He suffers right along with us.  And I also know that somewhere, sometime, he will use another doctor and one of us to bring an end to our suffering.  How do I know this?  Because it happened to me.


Tuesday, February 21, 2012

Guilty Mother Syndrome

For those of us with chronic pain who have children, we also suffer from Guilty Mother Syndrome.  This is, for me anyway, one of the worst parts of having chronic pain.  I am the mother of three teenage boys.  When I had my first child, I envisioned myself as Super Mom.  I knew that I would be at every school event, every sporting event, every milestone.  I believed that I would make sure my children got to explore everything that they were interested in, be it music, athletics, the arts.  You name it, and if one of my boys wanted to try it, I would make it happen.

And, for awhile, I did everything to live up to this.  Anytime they had something going on at school, I was there.  Because I had to work, I wasn't able to volunteer in the classroom or that type of thing, but the after school activities were important and I was there.  I was so proud of my boys, and I still am.  But, when my oldest child was only 8 years old, my physical problems began.

This is when I started having my back problems.  When I felt the first pain, I was off work for almost two months while doctors tried, and failed, to "fix" me.  I was told that I would have to learn to live with it.  I went back to work, and when I got home, I had nothing left to give.  I had to work in order to support my family.  My husband's illness had begun just before this, and he was no longer able to work, so everything was in my hands.  My promise to myself to be Super Mom withered and died right then and there.

I went to the things that I could, but I couldn't be counted on anymore.  Some days, by the time I got home from work, all I could do was take my pain medicine and crawl into my bed and try to get through the night so that I could do the same thing the very next day.  I tried so hard to do the things that I had before, but I just physically couldn't.  And when I would tell my child that I knew I had promised we would go to the school carnival, but that I just couldn't do it, I would see the pain and disappointment in their little faces.  My boys would say that they understood, but I knew they didn't.  I didn't understand, so how could an 8, 6, and 4 year old understand?

Eventually, my problems became so severe that I could no longer work.  There were weeks when I couldn't get out of the bed, and pretty soon, my boys stopped asking to go to school functions.  They stopped asking if they could join cub scouts or other extra curricular activities.  I could see how disappointed they were, and the guilt that I felt was crushing.  As the boys got older, they started participating in team sports.  I was so proud of them.  I was able to take them and pick them up from practices, but going to the games was just about impossible.  They would come home and tell me all about it, and how well they had played.  I would apologize for not being there, and they would say that they understood.  But I knew differently.

Mom's pain has become a member of the family now.  I do as much as I can, but it's never enough for me.  I managed to attend my oldest son's last football game his senior year of high school.  This was Senior Night, and during half time, the senior's and their families went onto the field for a ceremony.  I treasure the picture's from that night and I can see the pride in my son's face as he stood on that field with his family.  We didn't look like most of the other families.  I held tightly to my son's arm, partly out of pride, and partly to keep from falling because standing there was causing me so much pain.  And his father was on his other side in his wheelchair.  It meant so much to him, and to me, that we were able to be there for that.

Guilty Mother Syndrome will be with me for the rest of my life.  I feel guilty for all the things that my children have missed out on because of my chronic pain.  I feel guilty that I haven't been there for everything that they were able to do.  I feel guilty every time I tell one of them that I'm sorry I couldn't be there for them, and I feel guilty every time they tell me that they understand and to not worry about it.  In fact, I'm already starting to feel guilty for not being the grandmother I want to be, and they are all years away from having children of their own!

But I comfort myself in knowing that I have raised good young men.  My son's have more compassion for others because of what I have been through.  They are kind and understanding.  They do what they can to help others, and they stick up for the underdog.  I am so proud of these three boys, and I know that they are going to go far in life.  I'm working on the Guilty Mother Syndrome, because I know that they don't want me to feel this way.  I actually did a good job as a mother, and this is one thing that I don't have to feel guilty about.

How Depressing

One of the things that goes hand in hand with chronic pain is depression.  I once had a doctor tell me that if you have chronic pain and don't deal with at least some depression, then you don't really have chronic pain.  For myself, I have found this to be true.

Think about it.  Everyday of your life, you live with crushing, physical pain.  You aren't able to get out of the bed without help.  You can't go grocery shopping because you don't have the stamina to make it through the store.  You can't go to church anymore because sitting in the pew causes excruciating pain.  You can't make plans to have lunch with a friend in a few days, because you don't know if you are going to be able to move that day.

People don't understand what you are dealing with.  When you first get sick or injured, people are very understanding.  Friends and family come to visit and they are full of caring words.  After a month, the visits slow down, and you start to hear the veiled insults.  Things like, But you look fine; If you just get out of the house you would feel so much better;  If you go take a walk, you'll feel better.  They mean well, but they don't know how bad these comments hurt.

As a species, I don't think we are geared to understand chronic pain.  Oh, we understand pain - we've all experienced it.  Child birth, a broken bone, surgery of some sort.  All of these things hurt, and sometimes, we don't think it will ever end.  But it does.  The pain eventually goes away and we go on with our lives.  We really have no concept of pain that never, ever goes away.

The depression is almost worse than the pain itself.  We mourn the life we used to have.  We mourn for the loss of friends who drift away because we aren't the person we used to be.  Sometimes, life can seem like a black hole of pain, loneliness and hopelessness.  Many people dealing with chronic pain commit suicide because they just can't see the way out of that black hole.  There have been times when I have even considered it.

If you are dealing with chronic pain, it is so important that you deal with the crushing depression that comes with it.  If you start to feel depression, it is so important to talk to you doctor about it.  For many, just taking an antidepressant can keep the black hole at bay.  For others, talk therapy works.  And sometimes it takes both.  And if you know someone with chronic pain, there are things you can do to help.

The first thing you can do is simple be there for them.  Stop by and let them know that you are still there and you care about them.  Let them talk about the things they are going through.  They aren't looking for you to solve their problems; it is enough that you are there and listening.  Be aware of your loved ones mood.  If you notice that the depression seems worse, do whatever you can to get them help.  Don't tell them what worked for someone else.  Trust me, if they have been living with chronic pain for a long time, they have tried it.

And if you are the person suffering from this, keep fighting.  I know how hard it is.  I know how much you just want some relief from the pain, both physical and mental.  But life is still worth living.  There is always something to get up for in the morning.  And your life matters, regardless of what you may think.

Monday, February 20, 2012

Accepting the Hermit in Me

If I told most people who know me now that I am incredibly shy, they would probably laugh at me and say "Yeah, right"!  I can talk to just about anybody, and frequently embarrass my children by starting conversations with complete strangers in the checkout line at the grocery store.  I'm great with small talk at a party, and I can be pretty witty when I need to be.  But deep down inside, I'm still scared to death that people are going to see through the facade to the terrified girl who still lives inside me.

I have been shy for as long as I can remember.  In school, I never had a lot of friends because the idea of striking up a conversation with someone could strike terror in my heart.  I would get sick to my stomach if I had to talk to someone that I didn't know, and I still feel that way, I just control it better than I used to.  They used to joke that I knew what the top of my shoes looked like better than anything else because I walked around with my head down, rarely making eye contact with anyone.  I never had a lot of friends because I had no idea how to go about making friends.  In fact, I still don't have a lot of friends.  Small talk is easy for me.  It's what to say after that that still paralyzes me.

I look at other women who have these close relationships with other women and I have no idea how to develop a friendship like that.  All of the friends I have right now are either on line, or they are old friends who live miles away from me.  I don't have any friends in the town I live in.  Some of it stems from my chronic pain issues.  I'm not able to get out to really meet a lot of new people, and you can't exactly ask that nice woman in line a the grocery store for her number because you want to be her new best friend.  That's just creepy!

The other thing is that I actually prefer my own company to that of most other people I know.  I am perfectly content not to talk to other people.  I am able to entertain myself for long periods of time, and I've always been that way.  Give me a good book, and I can lose myself for hours.  I would be perfectly content if I never had to leave my house again.  I also have to have time completely alone every single day, or I can get very close to having a panic attack.  As much as I love my husband and children, there are times when I wish that they would go away for a week or so just so that I didn't have to talk to anyone and I could enjoy my solitude.

As a teenager, I was diagnosed with agoraphobia.  I quit going to school, church, anywhere that other people would be gathered.  I preferred staying in my room, and just getting in the car to go to my grandparent's house less than a mile away could induce a panic attack from which I was convinced I would never recover.  Thank God my mother dragged me kicking and screaming into therapy.  I am much better now, but I can always feel that teenage girl struggling to get back out.  I once mentioned to a therapist that I had Wal Mart-a-phobia, and she laughed and told me that, no, I didn't have that particular condition, it was the agoraphobia rearing its ugly head, and that she was proud of me for fighting it as hard as I do.

I think that the hermit inside of me is always going to be there.  After all, I'm going to be 50 years old this year, and as they say, you can't teach an old dog new tricks.  But I think that I am learning to strike a balance between the hermit that I tend to be and the social butterfly that I want to be.

Sunday, February 19, 2012

I'm Not Having a Good Day

So, I'm not having a good day today.  Two weeks ago, I had a caudal block injection.  What is this, you may ask? A caudal block is an injection into a canal in the tail bone area which runs up to the spinal canal in the low back.  It numbs the area and you don't feel the pain that is normally there.  Getting the injection itself is pretty unpleasant, but the results are so worth it.  For the last two weeks, my lower back has basically been pain free.  The only down side is that they can't tell you how long the injection is going to last.  I've had a few twinges of pain my lumbar region over the last few days.  I thought that the injection might be wearing off, but then the twinges would ease up, and I would decide that the medicine was still working to numb me.

About 4:00 this afternoon, I was curled up in my recliner.  I had taken my pain medicine and decided that I would take a little nap.  When I woke up an hour later, my lower back felt like I had been beaten with a baseball bat!  And even though I knew that the injection was starting to wear off, I was shocked.  I really thought that the pain would come back a little at a time, and that I would be able to prepare myself for it.  I had no idea that it would be so sudden.  It's really depressing.  Here I have had two of the best weeks that I've had in the last ten years.  I've been able to do things that I haven't been able to do in a long time.  And now, I'm back where I started.

I knew that the relief wasn't permanent.  My doctor explained everything to me, and I knew, intellectually, what was going to happen.  Now, not only am I in pain, I'm depressed too.  I want the last couple of weeks back, and I want them back now!  OK.  That's all the temper tantrum I'm going to throw.  I go back to the doctor on February the 28th for another injection.  I know that there is a chance that the next one won't work at all, but if I'm lucky, I'll get two more wonderful weeks with no pain in my lower back.  Life does have its rewards!

Who Am I?

Who am I? The simple answer is that I am a wife and mother to three teenage boys. I am 49 years old. I was born and raised in Ft. Smith, AR, and I currently live in Bardstown, KY. I am a daughter who thinks that her mother hung the moon, and I am a sister. These are the simple answers to the question "Who am I?", but I am so much more than this.

I am a survivor, first and foremost. I survived brain surgery at 6 weeks of age, when the doctor's actually told my parents not to get too attached because I was probably going to die, and if I did survive the surgery, I would most likely have severe brain damage. Neither of these things happened. In fact, thanks to some out of the box thinking, I was the first baby to survive the surgery. I survived childhood sexual abuse at the hands of two different predators. One was the grandfather of our next door neighbor, and the other was a teenage boy in the neighborhood. Both of these acts happened before I was 8 years old. I survived crushing depression as a teenage girl, and while I still battle depression, I know that I am stronger than it is.

I am a caregiver. My husband is also disabled. He has a condition called spinocerebellar ataxia. This is a hereditary condition which causes the cerebellum to deteriorate. The condition causes a loss of control of both fine and gross muscle movements. Dale is now confined to a wheel chair. He can stand if he has something to hold on to, but he can no longer walk. The condition is progressive and will get worse with time. Because it is hereditary, there is a 50/50 chance that our sons will have it.

I am a mother to three teenagers, and this is probably the hardest and most rewarding part of who I am. I'm far from perfect, but I do the best I can. Each boy is an individual, with his own strong points, and failings. Nothing I have ever done in my life has been more rewarding and, at the same time, more painful, than being a mother.

And, like millions of people, I am a sufferer of chronic pain. I wake up in pain, and I go to bed in pain. There are days when it is all I can do to walk from the bed to the bathroom. But I do it. Because of my husband's disability, he can no longer drive. So, no matter how I am feeling, if things need to be done, or the boys have to go somewhere, it falls on me. And I take care of it. There are many days when all I can do is cry. I cry for the life I used to live; I cry because the pain is so intense; I cry because I don't feel good enough; I cry because I feel that I am letting so many people down. And then, I wipe my eyes, blow my nose, and keep going.

Like everyone, I am a complex individual. There are so many different aspects to who I am, and I am still getting to know many of them. I hope that by learning more of who I am, it will encourage you, my dear reader, to explore the many different parts of you. And in the end, I hope that we can both learn to love who we are, and strive to become the person we want to be in the end.

Saturday, February 18, 2012

I'm Jealous.....of My Husband's Wheelchair!

There! I've said it publicly! I'm sure a lot of you are scratching your heads over this statement, but it's really quite simple. My husband and I are both disabled. His disability has left him in a wheelchair, and yes, this is quite sad. The problem for me is that when you see him, you see his wheelchair, and you know that this person has a DISABILITY. When you see me, you think, "What's wrong with her? She looks perfectly fine!" Sometimes, I use a cane to help me, but I don't need it all the time. But I've thought about using it all the time to avoid the stares when I get out of my car in a handicapped parking space. I can only walk so far at a time without debilitating pain, but you wouldn't know that just by looking at me.

And the truth is that just because my husband is in a wheelchair, he is far from helpless. In fact, he is in better shape than I am most of the time. He is able to do more things around the house. He has better stamina than I do. He has pain, but not nearly as much as I do. People who meet us for the first time and see him doing things for me while I sit down, often think that I'm lazy or even mean for making my poor, disabled husband wait on me. Because my disability is basically invisible, people don't know it's there. I'm not the type to wear a sign around my neck listing all the physical problems that I have. In fact, I don't mention it unless I'm asked about it. But there are times when I think, "If I only had a wheelchair like Hubby, I wouldn't have to defend myself so much". But for now, I hold my head up high and try to ignore the stares and the whispered comments that are actually meant to be heard. And in a quiet corner of my heart, I'm jealous of my husband's wheel chair.

My First Time

I've been wanting to start a blog for some time, but I've just never gotten around to it. I even set this up almost 2 years ago and never wrote a thing! But today, all that changes. I'm hoping that I have some things to say that might interest some people, and even if I don't, I'm writing this for me. I've written a journal for quite sometime, and I think I'm interesting! The primary focus of this blog is going to be my life and the things I'm going through.

The title of my blog is "It's a Pain". Why that title? I am one of millions of people around the world who lives with chronic pain. If you look at me, you aren't going to see anything wrong with me. If I had a nickle for every time I hear "But you look fine", I would be a wealth woman. What causes my pain? There are a few things which I'll put here. My primary pain is my back. I have several things wrong there. I have a condition called spondylolithesis, which is a condition in which the vertebrae slip out of place. I have had one surgery to fuse my L5-S1 vertebrae. Because of this, I have 2 rods and screws in my back to hold everything together. I had the surgery to relieve my pain, but it didn't work. In fact, the last MRI I had showed that even with the rods, my fusion has slipped slightly. Also, the vertebrae above this has slipped as well.

I also have Degenerative Disk Disease, otherwise known by the initials DDD. DDD occurs when the disks between the vertebrae begin to lose the cushioning ability. I have several disks which have lost all of the fluid in them, causing the bones to rub together. I also have several bulging disks and I have lumbar spinal stenosis, which is a narrowing in the space where the spinal cord runs. All of this is very painful.

I have severely bad knees which hurt all the time. I injured my right knee the first time when I was 14 years old. This required surgery. I subsequently required a total of 10 surgeries on this knee. The last one was the removal of my meniscus. The meniscus is the padding between the bones which forms the knee joint. Without the meniscus, the bones rub together causing tremendous pain. I'm now going to have to have a knee replacement.

Last, but not least, I have fibromyalgia. Fibro is intense, deep pain throughout the entire body. For me, this is a deep muscular ache. The best way that I can describe it is the way your muscles feel when you do really hard exercise after having not exercised for a very long time. Some days are worse than others. Some days, the pain is just hovering around the edges and I can function pretty well, and other days, it keeps me from moving very much at all. It also effects the way my mind functions. Those of us with this condition refer to it as fibro fog. I forget things that I know well. I lose words, and frequently get stuck when I'm trying to say something. I lose things, like my keys or my glasses. And it causes severe fatigue. Even when I get a good eight hours of sleep, I feel like I haven't slept at all.

So those are the things that I deal with every single day of my life. If you look at me, you won't see any of these things, but believe me, they are there. One day, I may be able to do all of the things I did before I started getting ill. But the next day, I may not be able to get out of the bed, and this may last for weeks or months. People don't understand chronic pain. If I told you that the pain you felt in child birth, or from breaking a bone would stay with you everyday for the rest of your life, you wouldn't believe it. I didn't believe it until I started living with it.

I don't want this blog to be depressing. I want it to be a place where I can honestly say what I think, feel and experience on a daily basis. I want to talk about what it's like to feel like I'm letting my children down when I can't be there for something they are involved in. And I want to talk about the great joys I have in my life. I hope that I have things to say that others can relate to, and I hope I open help open people's hearts to those who have chronic illnesses of any kind. Life is a journey, and I want to share my journey with you.