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Saturday, December 15, 2012

Heartbreak in Connecticut

At this time of year, many of us feel stressed and overwhelmed.  We worry about shopping, decorating, entertaining, and a host of other things.  We worry about whether we have bought the right gifts, or enough gifts.  We worry about traveling, the amount of money we are spending, and we stress about having to spend time with friends and family.  Yesterday, we learned that all of those worries really don't matter at all.  Yesterday morning, at approximately 9:30 a.m., a monster entered Sandy Hook Elementary School carrying two semi-automatic handguns.  By the time his rampage was over, 26 innocent people, including 20 little children, had lost their lives.

Like me, I know that you were all horrified that something like this could have happened.  I stayed glued to the television yesterday, watching the coverage of this national tragedy.  I shed tears for the lost lives and for those left behind and my heart broke for those who lost loved ones.  I also felt great pride in the teachers who kept many of their small charges safe during this nightmare.  I wished that my children were home so that I could hug them and tell them how much I love and appreciate them.  And while I can empathize with the loss that these people have suffered, I truly cannot comprehend the level of grief that they are dealing with right now.

Several times, I turned to prayer.  I asked God to be with the families as they come to grips with the enormity of what has happened.  I asked Him to bring peace to those who survived, and to bring peace to the families who have lost so much.  I prayed for the innocents who are gone too soon from this world.  And, I asked him to watch over all of us as we process something we cannot even imagine happening.  In an interview, one of the priest in Newtown, CT said that he was asked by members of their community if they should turn off their Christmas lights as a show of respect to those who died, and he said that he told them absolutely not.  He also stated that the Christmas sky was a little bit brighter, with 20 little bright lights in the heavens.

At a time like this, the problems that we are dealing with in our every day lives just don't seem nearly as important.  We are reminded that we need to treat each other with kindness, and that we should love one another just a little bit more.  We are reminded how precious our children are, and we all probably hugged them just a little tighter last night.  We are reminded that the gifts we give at this time of year aren't nearly as important as the sentiment behind them.  We are reminded that, as annoying as some of our friends and family may seem, we are blessed that they are still in our lives.

In the coming days, we will hear more about what happened during this tragedy.  We will learn more about those who lost their lives on this day.  We will try to understand why something like this could be allowed to happen.  And eventually, we will go on with our lives.  I hope that we are able to hold on to the joy of the holiday season, even in the face of such unspeakable horror.  I pray that we are able to gives thanks for the blessings we have in our lives, and that we are able to let go of some of the stress of the holiday season and simply enjoy our families.  And when you give thanks this Christmas, say an extra prayer for the families in Connecticut.

Monday, November 26, 2012

The Invisible Illness

Chronic Pain.  Fibromyalgia.  Chronic Fatigue Syndrome.  These, and many others, are known as invisible illnesses.  For those of us suffering from one or more of these, we completely understand the reason behind this title.  For others, the reason may not be quite as clear.  These conditions are known as invisible illnesses because you cannot look at those of us who suffer from them and see that they are there.  In fact, with many of these so-called invisible illnesses, there is not a specific test which can pinpoint the problem.  Because of this, many of us have been told that there is nothing wrong with us, or that we simply don't look sick.

There are times when I think it would be easier to have some sort of illness that everyone can see.  I almost wish, at times, that there was a neon sign over my head flashing "SICK PERSON" to everyone around me.  Most of the time, I use a cane to help me walk.  Without it, I can often only manage a few steps at a time.  You would think that the cane would be a sign to people that something isn't right.  Unfortunately, this is rarely the case.  I have gotten dirty looks, and have had people run into me in stores because I wasn't moving fast enough to suit them.  I frequently use one of the motorized carts provided by many stores.  If it wasn't for those carts, I wouldn't be able to get through the larger stores these days.  Because you look at me and see a normal person, people have given me more dirty looks, and have even made rude comments.

The person with an invisible illness doesn't just suffer at the hands of those who are uneducated about our conditions.  Many in the medical profession still refuse to acknowledge the existence of fibromyalgia, which has been proved to be a real condition.  As many of you know, the first time that I mentioned to a doctor that I thought I might have fibro, he looked at me and told that fibro didn't exist.  He went on to tell me that it was just something invented by doctor's to shut up hysterical, hypochondriacal women.  I was so shocked by his response that it took me almost 4 years to mention it to another doctor.

Because of the culture of drug abuse that thrives in this country, most of us with chronic pain conditions are looked upon with suspicion right out of the starting gate.  Emergency room personnel often assume that we are simply seeking pain medication.  In fact, they have a term they use for drug seekers - frequent flyers.  Now, there are many people out there who are seeking drugs.  I will never deny that.  However, those of us who truly suffer with a chronic pain condition must bear the brunt of the suffering caused by these people.  We are not only distrusted by emergency room personnel.  Often, the very doctors we go to for relief from the unrelenting pain we live with start out from a position of distrust.  I am talking about the pain management doctors.

Pain management doctor's are trained to treat people with chronic pain conditions.  Because of the abuse of the system, which is rampant, most of these doctor's now require that you sign a "Pain Contract".  This contract spells out many of the rules and regulations we as patients are expected to follow in order to receive the medication that allows us to function.  Some of the rules include using the same pharmacy, not getting pain medication from another doctor, monthly pill counts, and random urine tests.  I understand that the doctor's are trying to protect themselves.  I understand that those who do abuse the system make things difficult for the rest of us.  However, because of the system we live under today, you and your doctor are placed in more of an adversarial position than one of doctor and patient.  There is very little trust between the two.  If the patient makes even one mistake regarding this contract, they can be removed from the practice with little or no recourse.

Because pain management isn't a large specialty, finding a new doctor can, for some, be next to impossible.  And what rights do we have with regards to the doctor-patient relationship?  Very few, as far as I can see.  The minute you sign the Pain Contract, there is almost an assumption that you are guilty of something.  You feel as though the doctor, and the staff, are just waiting for you to screw up.  And even though you are told from the outset that you have the right to adequate pain control, you are afraid to tell the doctor that the medication he or she is giving you isn't working anymore.  There is always a fear that they will decide that you are an addict and take you off what little medication you are taking.

For those of us with an invisible, pain-related illness, the system is broken.  Because we suffer from chronic pain, we are looked upon by many as being weak, and quite often, as drug addicts.  Unlike the "big" diseases such as cancer, heart disease, and AIDS, we don't have large organizations advocating for us.  Quite often we are alone to fight an uphill battle that we cannot win.  Alone, we have no voice, but together, we can become a force to be reckoned with.  We need to contact our leaders on both a state and national level to make sure that our voices are heard.  We need to contact medical schools and offer to talk to upcoming classes of new doctor's to help them understand the things we are up against in our daily lives.  And we need to support one another, because right now, we are all we have.

Wednesday, November 14, 2012

The Holiday Doldrums

Well, the season has started.  We are now being bombarded with images of perfect families, gathered around turkeys and trees, looking completely happy to be there.  Our senses are being assaulted with Christmas Carols, ringing bells, and various wonderful smells.  Our televisions are already showing Christmas movies, and the commercials are whipping our children into a frenzy over which toy they will absolutely die without.  We are expected to greet everyone we see with a great, big smile, and a hearty "Happy Holidays!".  We have entered the land of forced cheerfulness and joy.

This is the time of year that I want to crawl into a hole and pull and rock over my head.  Like the famed ground hog, I feel like poking my head out of my hole every once in a while to see if its spring yet.  If you can't tell already, this is probably my least favorite time of year.  Cooking Thanksgiving dinner is an excruciatingly painful experience for me.  My husband and sons help as much as they can, but most of the time, they are parked in front of the T.V., watching the games, while I am slaving over a hot oven and stove, praying everything is ready at the same time.  By the time we eat, I just want to crawl into my recliner and down a handful of pain pills.

I don't get giddy at the sight of twinkling lights and the thought of putting up the Christmas tree and decorations fills me with dread.  For years, I have made a good show of it for the sake of my boys, but, if it wasn't for them, I would probably just ignore the whole thing.  The holidays have been depressing to me for almost as long as I can remember.  As a child and teenager, it never failed but that I was sick over Christmas.  Almost all of our family pictures from that time show me looking absolutely miserable.  I always appreciated the presents my family gave me, but once everything was opened, I felt such a let down, and I couldn't seem to come out of it.

I hate shopping, and I always have.  The very idea of going to a mall at this time of the year fills me with terror.  I have a mild form of agoraphobia, and all of those people pressed around me brings on a panic attack almost every time.  These days, I do most of my shopping online in order to avoid the crush.  Because my husband and I are both disabled, money is always tight.  This year is worse than usual, and I have no idea how I am going to get my boys anything for Christmas.  Whoever said that it's the thought that counts had no idea what they were talking about!  I know that anything I am able to do is going to be a disappointment for them, especially when they have to listen to their friends talk about the game systems, cars, computers, and the like which they got for Christmas.

From now until probably February, I am going to be depressed.  This is simply a fact of life.  Forget the holiday part of it; this time of year causes me excruciating pain.  The cold is almost more than I can bear anymore.  I have rods in my back from my fusion surgery, and when they get cold, it feels like tin foil touching a filling.  It's hard to get excited about celebrating anything when just walking to the bathroom hurts so very much.  If I had my way about it, the holidays would pass completely unnoticed in my world.  I know that probably sounds selfish to some, but it is the honest truth.

And so, this year, like every other year, I will fake it.  I will cook Thanksgiving dinner and pretend to enjoy it.  I will decorate the tree with a smile on my face.  I will send out a few Christmas cards and I will smile when I say "Merry Christmas".  I will buy what presents I can afford and pray that it's enough.  And, I will be miserable the entire time.  I wish that I wasn't like this, and I would do anything I could do to change it.  Unfortunately, I haven't figured out a way to get out of the Holiday Doldrums.  I just keep reminding myself that spring is around the corner, and I am thankful that the Holidays only come around once a year.

Sunday, November 4, 2012

Facing Mortality

I turned fifty this year, and while it doesn't seem nearly as old as it once did, this age brings your mortality into a far more sharper focus.  I no longer believe that I'm going to live forever, nor do I think I'm going to die in the next ten years.  My life is different from my parents was at this age.  I'm still raising my children, and my parents had already entered that empty nest phase.  They were able to spend a month in Europe while I was in college and my sister was in high school.  I know I will never do that, although I wouldn't turn it down.

My mother turned 72 this year and she is in better health than I am, and yet the thought of losing her scares me more than the thought of my own death.  My mother is still my best friend and my biggest cheerleader, and the thought of not being able to just pick up the phone and call her whenever I want makes me very sad.  I would do anything to be able to move home just to spend the rest of her life being there for her, the way that she has always been there for me.  But right now, that just isn't possible.

My husband and I are both in poor health, even at this relatively young age.  As many of you know, my husband has a progressive neurological disease which is hereditary.  I constantly worry about what will happen when I am no longer able to care for him.  It is already getting to the point that I can't get him out for appointments and that sort of thing, because my disability has made lifting his wheelchair into and out of the car almost impossible.  My two children who are still at home help out more than they should have to right now, and I tell them daily how much I appreciate them.  However, my middle son will leave for college next fall, and my youngest one will only have two years of high school left and then he will be gone for college as well.  What will we do when it is just the two of us?

Right now, I am equally afraid of dying at a relatively young age, and of living to be a very old woman.  I don't want to be a burden to my boys.  I want them to be able to live productive, happy lives without having to worry about what to do about Mom and Dad.  I also worry about the possibility of them inheriting their father's condition.  While we had no way of knowing about it, I wonder if I would have had children if I knew we would possibly be handing this to them.  But, being selfish, I can't imagine my life without my beautiful boys.

I pray all the time that one day, I will wake up and my physical pain will be gone.  For the time being, that prayer isn't being answered.  I wonder, though, if I would be the woman that I am now had I never suffered with this chronic pain.  Would I be as empathetic towards others?  Would I reach out to people who suffer? Would I be sharing my life through my writings with others?  While I can't fully answer these questions, I would like to think that I would.  I also wonder if I would be thinking about my own mortality at fifty if I hadn't been given the life that I have now.

Sunday, October 28, 2012

Honesty isn't Easy

Writing my blog has been one of the most freeing, and terrifying, things that I have ever done.  I have given myself permission to open up and allow others to look into my thoughts and feelings.  For me, this is a daunting task.  I've written before, that, thanks to the way I was raised, being open and honest is never easy.  I was always told that you should "put your best foot forward", and I have always tried to live that way, even though, on many occasions, it has led me into deep depressions.  Today, a lot of things have been coursing through my mind, and I'm going to take a big step towards being totally honest.  It isn't easy, but I think it's important.

Okay, here goes.  The last few days, I have been doing a lot of soul searching and I am starting to assess some of the things I'm learning about myself.  Even though I often feel the weight of the world on my shoulders, I try not to show that to the the people in my life.  I am very good at suppressing my emotions, stuffing them down so deeply, that even I think that they don't exist.  But, you can only stuff so many things into a container.  Pretty soon, that container starts to over flow.  Well, my inner container is full, and things are starting to fall out.  I can try picking them up and stuffing them back in, but soon, you realize that nothing else is going to fit.

Right now, I'm really angry about the way my life has turned out.  I take full responsibility for most of it.  I have made mistakes that have led me to where I am, and there is no way to go back in time and change these things.  I really thought that I had learned to accept my life as it is, but I do have regrets.  Some of the things that I'm angry about, however, are out of my control and these are probably the hardest to live with.  Chronic pain has stolen so much from me.  I want my life back!  I want to know what it's like to wake up in the morning, feeling rested and without pain.  I want to be able to just pick and go do things without having to access how I'm feeling, or how I'm going to feel if I actually do what I want.  I want to be more available to my children instead of always telling them that I can't because I feel so bad.

I'm tired of seeing the person in the mirror who looks back at me.  I have gained so much weight lately.  I talk about losing weight, but just can't seem to do anything about it.  I am an emotional eater.  Happy, sad, angry, it doesn't matter - I can find some sort of food to stuff in my mouth that I think is going to fill the hole.  But it never does, and then I eat more, trying to fill the hole that eating the first mass of food created inside me.  Now, you would think that knowing this about myself would be half the battle, but it isn't.  Knowing that I do this to myself almost makes it worse.  It's like I think I'm past the point of no return and nothing I do is going to fix it.

Food is my drug.  I love it and hate it at the same time.  I have been this way for almost as long as I can remember.  As many of you know, I was molested as a child.  I really believe that my emotional eating started with this monstrous act.  I was also an extremely shy and awkward child.  I didn't have many friends, but I always had food.  It was always there, and it always made me feel better, at least for a short period of time.  I was miserable in school, and when I got home, there was always something to eat at home.  I could always get my fix, and know that the pain would go away, even for a short period of time.

Over the years, I have been able to diet and lose weight, but it always came back.  Something would always come along to drive me back to my drug of choice.  I have gained and lost a couple of people of the years.  I think it would be far easier to kick a drug or alcohol habit, because you can live without those things.  Unfortunately, you can't live without food.  Whenever I feel hunger pangs, I feel terrified.  I almost feel like I am going to die from the pain, and I have to immediately eat something to stave off the pain.  I think that those pains of hunger represent the emotional pain throughout my life.  If I don't feel the pain of hunger, then I won't feel the emotional pain that has always been a part of my life.

I wish that I could end this piece by saying that I have a handle on this, and that I have started a diet which is going to be the one which is going to take.  I can't say that yet.  I wish I could say that I am ready to end my toxic relationship with food, but I can't.  What I can say is that I am ready to publicly admit what I am going through.  I am ready to admit that food is my addiction, and that I am powerless against it.  That seems to be the start of the battle, and I pray that one day soon, I will be able to say that I am at least fighting the war.

Saturday, October 6, 2012

Please Don't Ask Me How I Am

Do you ever get tired of people asking you how you are doing, and then watching their eyes glaze over when you actually start to tell them the truth?  Have you learned to respond with the obligatory "I'm fine", because you know that's really all the other person wants to hear?  I know I am.  The real title of this post should be "Don't Ask Me How I Am Because I Don't Have The Energy To Lie To You Right Now"!

Through the years of living with chronic pain, I have learned that most people really don't mean it when they ask you how you are.  They want the short, sweet answer of I'm fine.  Most of the time, I can toss that one off with ease.  I can even smile when I'm saying it, and make the other person believe that I really am fine.  The truth of the matter is that I want to say, "I feel lousy right now!  Every inch of my body hurts, and just standing hear talking to you is almost more than I can bear!".  Of course, I don't say this, but boy, do I want to!

Right now, I am going through a really rough time.  My pain is about a 20 on a scale of 1 to 10.  I find myself avoiding people, because I don't have the energy to smile through the pain at the moment.  And to be honest with you, I'm tired of listening to my self complain about how I feel.  We've all known someone who does nothing but complain, and sometimes, I think that I'm turning into that person.  Then, I think if I am turning into that person, I don't want to inflict myself on others, so I find myself withdrawing.  It's a vicious circle to be caught up in.

I am supposed to be going to see my mom next month.  She is paying for me to fly down and spend a long weekend with her.  I am really excited about it, but in the back of my mind, I am almost afraid to go.  I worry about having a flare up or just complaining too much.  I worry about trying to get through an airport in this condition.  I worry about getting there and not having the energy to do anything.  I know my mom understands, but I haven't really traveled with this before and I don't know how it's going to affect me.

At the moment, I am just sick of the whole thing!  I am tired of the pain!  I am tired of complaining!  I am tired of the person I am now!  I am tired of worrying about offending someone else if I actually have the nerve to really tell them how I am!  I think from now on, I will respond to the question of "How are you?" by saying, "Don't ask me if you don't really want to know".  That way, the other person has fair warning that they aren't going to get a simple "fine" out of me.  They know that something is coming, and I'm giving them an out from hearing about it!  Once I get started, I may still see their eyes start to glaze over, but they can't say I didn't give them fair warning!

Wednesday, September 26, 2012

I'm Afraid

Yesterday, I had several errands to run.  I had to pick one of my sons up from school, and then I had to do a few run of the mill errands.  I was in the car for about two hours, and luckily for me, my boys are able to do minor grocery shopping.  So, I sat in the car while they ran into a couple of stores and pumped gas for me.  By the time we got home, I could barely move!  My wonderful boys helped me out of the car and up the back steps.  I was in tears by the time I got in the back door.

My youngest son, Jack, took my shoes and socks off for me, and then my husband had to come in the bedroom and basically undress me and change my clothes for me.  Talk about embarrassing!  I know they love me, and they don't mind doing these things, but who wants to admit that they can't take their own shoes and socks off, or change their own clothes?  I made it to my recliner and just sat there and sobbed.

This morning, every inch of my body hurts.  I can barely move, and I know that today is going to consist of trying to recover from yesterday.  I miss the days when going out and running errands was just that!  I hate having to have a day to prepare myself for things like this, and then another couple of days to get over it.  I am angry with my conditions and with my body.  I feel like I am being betrayed by someone who has always been there for me.

As you know, my husband has a progressive neurological condition which has confined him to a wheelchair.  He is no longer able to drive, although he is a wonder around the house.  I have handled all of the "running" since he became ill.  It hasn't always been easy, but I have always been able to do what had to be done. I accepted that it was my role in the household.  Even though I usually hate doing it, I knew that this was the main thing that I did to contribute to the household.  I almost feel like I'm losing a part of my identity.

Pain has been my constant companion for many years now.  I go to bed with it at night and I wake up with it in the morning.  However, I've always been able to keep it at bay a certain amount of the time.  But now, the amount of pain I am experiencing is getting much worse.  It is the type of pain that makes you catch your breath and wonder how you are going to make it until the next minute.  How does a person keep going with pain this severe?  How do you continue to have a semblance of a normal life?  How do you keep from feeling like a burden to the people you love?  These are questions that I just don't have the answers to right now.

Dale and I aren't getting any younger.  Our children are starting to leave the nest, and in just a few years, it's just going to be the two of us.  I am terrified about our future.  What will happen to us if both of us are no longer able to function in the real world.  We aren't wealthy people and we can't afford to hire people to cook, clean and run errands for us.  Will our only choice be to move into a nursing home while we are still relatively young?  This just isn't the future I had pictured.

I still have hope that someone somewhere will find a way to treat chronic pain.  I still have hope that at some point, I will start to get better.  I still have hope that this is a temporary setback and I will start to feel better soon.  But, it doesn't take away the fear that I am experiencing right now.   I don't want to continue living like this and I don't know how to stop the fear.  It's not an easy life, but I'm not giving up.  I am going to keep fighting this until I don't have to fight it anymore.

Monday, September 24, 2012

The Power of Prayer

I am a firm believer in the power of prayer.  Now, before you stop reading, this isn't going to be a treatise on the power of religion.  I am not here to preach to anyone, anymore than I want someone to preach to me.  I am simply talking about my personal experience with prayer.  I also believe that prayer can take many different forms.  Some of us pray to God, some simply meditate.  I think that the effect is the same, in the long run.

As most of you know, I was born with a birth defect, requiring brain surgery at the tender age of six weeks.  My parents were actually told not to get attached to me because I would most likely die from the surgery.  Well, there was an army of people praying for me.  Not only did I survive the surgery, I was the first baby to do so without being severely mentally handicapped.  Now, the surgery is a pretty basic one.

Because of the type of defect that I had, a bone graft was taken out of my forehead.  It is a fairly small area, but for years, it caused horrible headaches.  Sometimes, the area would look caved in and it would be very tender to the touch.  At other times, it would bulge out, and those would be the times that I would develop the headaches.

My mom took me to several doctors, all of whom told us that there was nothing they could do about it.  It was just something that I was going to have to learn to live with.  Now, I was raised in the Episcopal church, which is very similar to the Roman Catholic church.  Our services are not loud and boisterous like many of the more fundamental faiths.  We do, however, share something with the more evangelical Christians.  We believe that God is the Great Physician and has the ability to heal us.

When I was around 15 years old, my grandmother announced that she was going to take me to an Episcopal healing service.  At that point, the only healing services I had ever seen were the ones on TV, where people were whooping and hollering, and people seemed to get knocked over a lot.  I told them I wasn't going, but my Grandmother could be a very persuasive person (meaning she didn't take no for an answer...EVER!), and I soon found myself sitting in a pew at the church.

I have to tell you that I was scared to death!  At that point in my life, I was very quiet and shy, and I didn't like being the center of attention.  I just knew that they were going to drag me to the front of the church, yell a bunch of things at me, and then knock me over.  But, as the service progressed, it was a very normal church service, and I became a little more comfortable with the whole thing.  Soon, the priest asked that anyone needing healing come forward to the altar.

"Here it comes," I thought to myself.  I tried to scooch down the pew, but my grandmother got hold of my arm, and dragged me to the altar.  Everyone knelt down, and the priest would quietly walk up to them and ask what they needed healing for.  I couldn't hear what anyone was saying, so it boosted my confidence a little bit.  When he got to me, he asked the same question, and I explained about the place on my forehead.

The priest laid his hands on my head and prayed, then he put some holy oil on the spot.  I went back to my pew, thinking it wasn't so bad.  I also thought that the only thing that would happen was that I would probably break out from the oil.  I hadn't been back in my seat long before I started to feel a burning sensation in my forehead.  It was centered right inside my bump, and it really started to hurt.  The pain got more and more intense, and I got really scared!  I told my grandmother, and she took me to the bathroom to wash off the oil, thinking it might be an allergic reaction.  By the time we got to the the bathroom, the pain had stopped.  When I looked in the mirror, the very prominent bump in the middle of my forehead was completely gone!

That was 35 years ago, and the bump has never come back.  There is a slight indentation where it used to be, but it has never swollen up again, and it has never caused me pain since that day.  Because of this experience, I quickly became a firm believer in the power of prayer.  Now, I don't think that every prayer for healing results in something dramatic like what happened with me.  I have prayed for my pain to be taken away, and it's still here.  I don't think that God caused my pain, but I do believe that it serves a purpose.

Because of my pain, I have made wonderful friends from around the world who understand what I live with everyday.  Because of my pain, I started writing again, and I love being able to do something creative.  Because of my pain, I am hopefully able to educate others about what it's like to live with a chronic, invisible illness.  And, because I have experienced God's healing love in my own life, I have hope that one day, my pain will be taken away as well.


Friday, September 21, 2012

How do I Explain?

Living with chronic pain is never easy; explaining it to someone who doesn't live with it can be even harder.  I have had people ask me what it feels like, or how I cope with it.  A lot of the time, I just look at the person like I have lost my mind.  Pain is such a subjective thing, and telling someone else what it feels like is almost impossible, especially if the other person doesn't have a frame of reference from which to work.

We have all had a healthcare professional ask us to rank our pain from 1-10, and to describe what the pain feels like.  I always find this so difficult.  What may be a five or six for me, may be a three or a ten for the other person.  My pain is mine, and it isn't easy to have someone else relate to that perception.  I once told a nurse that my pain was an eight.  She actually looked at me and told me that it couldn't be that bad because I wasn't in tears!  I looked her in the eye and told her that when you live with intense pain, day in and day out, it takes about an eleven to bring me to tears these days.  I could tell she wasn't buying what I was saying, but at that point, I didn't care anymore.

Ranking the pain isn't that hard for me anymore.  I'm very in tune with my body, and I can tell when the pain changes even slightly.  I function well at a five or six, but an eight starts to cause me to shut down.  And, ten isn't high enough when the pain is really severe.  Most people never experience a pain level of ten, so they can't grasp how those of us with chronic pain keep going.  I believe that a lot of people don't take us seriously because they don't have a field of reference for this type of pain.

Describing my pain is much harder for me.  How do you tell someone what agony feels like?  A dull ache?  Well, a dull ache sounds like a good thing most days!  I have tried telling people that it feels like someone is taking a sledge hammer and slamming it into my back repeatedly, to which they respond, "Is that stabbing, burning, throbbing, or a dull ache?".  Usually, I simply tell them yes, and then I am asked which one I'm saying yes to.  The answer is simple....I am saying yes to all of the above!

Honestly, I'm glad that other people don't understand what living with chronic pain is like.  I've often said that I wouldn't wish this condition on my worst enemy, and I mean it.  That being said, I do wish that I could educate other people about what it's like to live with a chronic pain condition.  I want people to understand that the condition is debilitating, but most of us force ourselves to keep going.  It's the only way we can have a semblance of a normal life.  I want people to understand how strong people living with chronic pain are.  I want them to know that we have learned to function despite the pain.

Everyone living with chronic pain wants one thing....a cure!  We don't want to live this way.  I would give just about anything to still be working and living a normal life.  But, until the day comes that they can cure chronic pain, I want understanding.  I want people to understand that we didn't choose to live this way.  We aren't exaggerating the amount of pain that we experience on a daily basis.  We aren't lazy, and we aren't looking for the "easy" life of disability.  We don't want people to feel sorry for us, either.  We simply want people to understand that this is the life we were dealt, and we are doing the very best that we can.

Thursday, September 20, 2012

Dealing with Frustration

Living with chronic pain brings on a whole lot of frustration.  Having to schedule your life around pain is frustrating; not knowing from day to day if you can do what you need to do is frustrating; having to depend on others for help with simple things is frustrating.  I know that, for me, all of these little frustrations can add up very quickly and turn into something else, if I allow that to happen.

I remember the days when I didn't even think about running errands!  I remember the days when going to the mall sounded like fun!  Now, going to the mall is like being asked to run the gauntlet, and I avoid it at all costs.  I have found a way to deal with that frustration, however.  Now, I do almost all of my shopping on line!  I can spend as much time browsing as I want and I can compare prices easily.  Not only that, I can do it all from the comfort of my living room, wearing my pajamas!  Can't get much better than that!

I really get frustrated with not being able to make plans in advance.  I know that people get frustrated with me because of this, but I hate having to cancel plans at the last minute.  I know that I have lost friends because of this.  I tell myself that if they can't adjust to being friends with a person with a disability, then they weren't really friends with me to begin with.  But knowing this doesn't really take away the sting.  Luckily, I have made wonderful friends through an online support group.  They are always there for me, and I am always there for them.  Knowing that I have someone I can depend on makes this far less frustrating for me!

Right now, I am dealing with feeling frustrated with my own physical limitations.  Yesterday, I had to take my son to get a new pair of glasses.  In order to get the glasses on the same day, we had to go to an optometrist in another town.  It's only about a 30 mile drive, but I was worn out by the time we got there.  I spent about 45 minutes on my feet while we looked for the perfect pair of frames.

 It takes about an hour and a half to make the glasses, so we had some time to kill.  We went to Mickey D's drive through for lunch, and then I decided to run to Walgreens and get my annual flu shot.  Just walking from the parking lot to the back of the store nearly did me in!  By the time the glasses were ready, and it was time to drive home, I was exhausted and in horrible pain.  Luckily, Matt has his permit and was able to drive home.  Today, I am really suffering from the pain, and I am completely worn out.  I have a doctor's appointment this afternoon, and I just don't know where the energy to get there is going to come from.  Needless to say, I am really feeling frustrated about this at the moment!

Life is full frustration, whether we live with chronic pain or not.  It's how you handle those frustrations that really matter.  Quite often, we can find ways to deal with this.  Sometimes it requires thinking outside the box, but there are different ways to do some of the things we want to do.  And then, there are other times when there really isn't anything we can do about those frustrations that face us.  It's important that we realize that beating ourselves up over it isn't going to solve the problem, or make it go away.  We have to face what's going on, and realize that it isn't the end of the world.

Friday, September 14, 2012

Find a New Dream

One of the worst parts about having a chronic illness of any kind is that it can steal our dreams right out from under us.  My dream was always to be a singer and actress.  I have been performing most of my life.  Nothing gave me as much joy as being on a stage, singing or acting.  In fact, I started out in college as a theater arts and voice major.  That didn't pan out, and I had to accept the fact that I wasn't going to be world famous, but I didn't let that stop me from performing.  I did community theater for years and loved every minute of it.  I also sang at weddings and funerals, and performed Karaoke.  I loved every minute of it!

Marriage and babies made it more difficult to perform as much as I wanted to, but I still found times to indulge my passions when I could.  I always thought that when my boys got older, I would be able to get involved with community theater again, and continue to perform when possible.  It was something that I looked forward to for years.  But then, my back problems began, and I developed fibromyalgia, and all of my dreams of performing again seemed to disappear like a wisp of smoke.

It is impossible to commit to doing a play when you don't know from day to day if you will be able to get out of the bed, much less spend 2 or more hours on your feet rehearsing.  Even singing became difficult.  I still did it when I could, but it would make my back throb when I was finished, and I quit doing that publicly as well.  I squared my shoulders, and told myself that the creative part of my life was over and that I would just have to accept it and move on.  However, letting go of a dream that you are so passionate about is a very depressing thing, and I went through a lot of difficulty accepting the fact that I no longer had that creative outlet.

The energy that I once expended on the stage was now poured into fighting my illness.  As you all know, there is nothing more exhausting than fighting an enemy that you really cannot beat.  Nothing I did would make the fibro or back problems go away.  So, I would conserve what energy I had and use it when I needed it.  I didn't have the energy reserves to even work in a technical position in theater.  You can't commit to doing theatrical makeup for a play when you don't know if you can get out of the bed.  Letting go of my dream felt like a death in the family. I buried something that I truly loved.

Stepping away from performing didn't kill my need to do something creative.  I needed an outlet of some sort, but for a very long time, had no idea how to feed this part of my soul. Painting or drawing wasn't an option because I can't draw a straight line with a ruler!  Crafting didn't interest me in the least.  Due to the brain surgery that I had as a baby, I have very poor hand-eye coordination.  That sort of prohibits making anything that anyone wants to look at!

In my search for a creative outlet, I reminded myself that I had always loved to write.  When I was in my teens, I decided at one point that I was going to write the Great American Novel.  My parents gave me an old typewriter, circa 1940, and I would sit in my room, pounding out novels full of teen angst, and schlock historical romances.  I never finished any of these, because eventually, I would read them and realize how truly bad they really were!

Eventually, I decided to try my hand at writing a blog.  Back when I was in school, I would always get excited when the teachers would assign us to write an essay.  While the other kids in the class were moaning and groaning, I was grabbing my pen and paper and getting started right away.  I decided that writing a blog couldn't be that much different from writing an essay, so I started looking into it.  Once I felt like I knew a little bit about it, I took a deep breath and dove in head first.

Writing and publishing that first post was very scary, but it was thrilling at the same time.  It's never easy to put yourself out there, but writing filled that creative void in my life.  I'm always nervous when I hit that send button, because you never know if people will relate to what you have written, or if they will even like it.  But it has been so worth it!  I can honestly say that I have found my joy again, and it is such a blessing.

Living with a chronic illness steals so much from us.  The things we used to do with ease are often so very difficult now.  It takes away our ability to live life the way we used to live it.  And, quite often, it robs us of the very things that brought us so much happiness.  I have come to believe that it is essential to our quality of life to find something else to bring us joy.  Writing has been the thing to bring that joy back to my life, and I love doing it.  What is something that could bring joy back to your life?   Perhaps you life to crochet or knit?  Even if you can only do it for a few minutes at a time, try picking it up again.  Once you start doing something that makes you truly happy, I think you will find, as I have, that your life only gets better.


Monday, September 10, 2012

Sometimes, the Water IS Thicker!

We are all familiar with the saying "Blood is thicker than water".  And, we all know this to mean that the family we are born with is more important than all the other people in our lives.  For a long time, I bought into this idea.  Even when I was a little girl, I believed that my family was the most important family on earth.  I believed that it was my job, up to a certain point, to take care of my little sister.  I'm sure those of you with siblings have experienced this before....I could treat my little sister any way that I wanted to and she had to put up with it.  But nobody else better think that they could treat her badly, or they had to deal with me!

As the years have gone by, I have lost the bond that I once had with my little sister.  We really don't have anything in common, and we don't really associate with one another.  In fact, my mother says that she finally had to accept the fact that she somehow managed to raise two only children under the same roof.  I am sure that my sister would disagree with me, but nothing I have ever done has been good enough for her.  I never had the right job; I never had nice enough things; I didn't marry the right kind of person, and my children were never perfect.

For many years, I have tried to force a relationship to be there, but it hasn't worked.  I used to call my sister a couple of times a month just to talk.  Pretty soon, however, I started to realize that she never picked up the phone to call me.  Eventually, I quit calling, in the hopes that she would notice and actually call me.  That was four or five years ago, and I'm still waiting for her to pick up that phone and call me.

For a very long time, I felt so broken hearted that I didn't have a relationship with my sister.  I still think about the fact that when we lose our mother, it's just the two of us.  I think we are both going to regret not working on a relationship.  But, as time has gone by, I have come to a grudging acceptance that this is my reality with my sister.

Now, to the part where the water can be thicker than the blood.  I have to give a lot of the credit to Facebook....yes, Facebook!  When I first came into the 21st century, thanks to my lovely boys, I started looking for support groups for fibromyalgia and chronic pain.  Lucky for me, I found some wonderful support groups.  Within these groups, I have developed friendships that are closer than my actual relationship with my sister.  These wonderful people have become my family.

I would never try to sit down with my real, blood sister and talk about my disabilities.  On the few times that I have done this, I have been told that if I would start walking miles and miles a day, and drinking gallons of water a day, all of my physical problems would go away.  At first, I tried to explain that my doctor's understood my problems and had told me that this was not the answer to my problems.  Well, these protestations of mine fell on deaf ears.

But with my Facebook family, I can share everything, and I feel safe.  I can tell them that my world is falling apart, and I feel loved.  I can cry that I don't know how I am going to go on, and I am encouraged.  I now have many sisters, and brothers, and I know that I am respected, and that someone thinks I am important.  These wonderful people have shown me that sometimes, water really is thicker than blood.

Tuesday, September 4, 2012

A Confession

A little while back, I wrote a piece about learning to accept the condition of chronic pain.  I still believe that it is easier to learn to live with this condition when we are able to accept it and quit fighting against it.  So what is my confession?  I am learning that this is far easier said than done.

To be honest, I really did believe that I had come to terms with what I am living with.  But the truth is, I am really pissed off about the whole thing, and I am trying really hard to come to terms with the anger I'm feeling about this devastating condition.  I don't like the fact that I feel the way I do.  I mean, what is the point in being angry with something you have no control over and can't get rid of by wishing it away?  This anger takes a lot of energy, and the stress that it brings on can and does make the pain worse.  But, this is the way I feel and I don't know how to get rid of these feelings.

Prior to my knee surgery, I really think that I had come to a place of peace about my condition.  I wasn't happy about it, but I knew that I couldn't make it go away just because I wanted it to go away.  I was in a good place as far as my treatment was concerned, and while it wasn't always easy, I was able to function. Since my surgery, I have lost a lot of my ability.  And I am just so angry about the whole thing!

I used to hate having to go out and do all the errand running, bill paying, shopping, child chauffeuring, etc., for our family.  I often felt like I never got a break, and there were times when I just didn't feel like I could keep it up.  Now, I would give anything to have that functioning back.  I really can't go anywhere by myself right now.  We only have three steps going out my back door, but I have to make sure I have someone with me now because getting up and down those three little steps is agonizingly painful.

I can't sleep in my bed anymore and I'm pretty much living in my recliner.  Lying down makes everything hurt and finding a position that's comfortable is a complete impossibility.  Every once in awhile, I will decide that I'm bound to be able to lie down for at least a little bit.  But within 20 minutes, I'm back to the recliner, and in tears from the pain.  It just isn't fair!

Because the only place that I can get comfortable is in the recliner, I am in the living room pretty much 24/7.  It's driving me crazy!  I'm one of those people who has to have a certain amount of solitude in her life.  I have to take a step away from everything and just have time alone.  Now, I'm never, ever alone, and I don't know how much longer I can take it.  I keep telling my husband that I want to move the bed up against the wall in the bedroom and move the recliner in there, but apparently, this just isn't going to happen.

I'm not proud of the way I'm feeling right now, but I'm not sure how to get rid of these feelings.  I'm normally not an angry person, but I'm walking around with a knot in the pit of my stomach all the time lately.  I hate my body right now.  I feel like I'm trapped in something that doesn't work anymore and there is just no way out. I actually am starting to resent people who have never experienced chronic pain!  This isn't me, but I'm afraid it's who I am becoming.

There have been times when my kids would look at me and tell me that something I had done wasn't fair, and at times, I would tell them that sometimes, life isn't fair, and you have to learn to deal with those times.  Well, right now, I want to climb to the top of the tallest building and start screaming that what I am going through isn't fair!  It isn't fair that I am in pain all the time!  It isn't fair that I can't sleep more than 3-4 hours a night!  It isn't fair that I can't lie down in my bed like a normal person!  It just isn't fair!  But then, in the back of my mind, I hear my own voice telling me that sometimes, life isn't fair.

Saturday, August 25, 2012

A Proud Mom

I'm letting my son, Matt, make this post.  He is in the process of writing his college application essay, and this is what he has written so far.  It really touched me, and I asked him if he minded if I shared it, so here it is!

People can have a profound effect on each other, and can influence each other's lives in ways they don't expect.  People have affected my life greatly, above all, my parents.  They have been there for me since the day of my birth, and now that I am applying for college, they are doing everything they can to help me with applications.  Not only have they influenced my childhood, they have influenced what I want to do with my life.

My parents are both afflicted with neurological disorders.  My mother has fibromyalgia, a horrible disorder which causes crippling pain.  My father suffers from spinocerebellar ataxia, a hereditary disorder which causes the cerebellum of the brain to atrophy.  With it, it takes away fine motor skills and balance, and due to this disease, my father is now in a wheelchair.  I have made it my life's goal to become a neurologist, and hopefully discover cures to these diseases.

Because of my parents' diseases, a great deal of responsibility has been laid on my shoulders.  I take care of them, doing the things they can no longer do.  I cook, clean, drive, and do many other things that they are incapable of.  I attempt to bear the responsibility in stride, but I am human, and it is often hard.  I get angry, though I know it isn't any fault of theirs.  I love them, and the anger passes.  My parents' conditions have rendered them incapable of working.  We live on Social Security Disability, a difficult life.  My brothers and I often go without the things other people our ages have; cell phones, computers, video games.  My parents do the best the can, however, and for that I appreciate them.

I have no idea how my life would be different if my parents were not the people they are, but I do know that I would not be the same person.  I have been shaped by the trials and tribulations of my parents, and am stronger because of the things we all have faced.  For that, I am grateful that my parents are who they are.



I have to tell you that this essay brought tears to my eyes.  Matt may feel that he has been shaped into the wonderful person he is by having us as parents, but we have been blessed a hundred times over by having him as our son.

Thursday, August 23, 2012

Courage

Since my knee surgery, I have had such a rough time of it.  I'm not recovering the way I thought I would, for starters.  I really thought that I was doing so well, and then I went to the doctor and he knocked the wind out of my sails by telling me how wrong I was in that regard!  He put me on bed rest, and here I sit, enduring what I've come to think of as forced captivity!  On top of having my wings clipped, my pain levels have gone through the roof!  My back hurts worse than it has in a very long time, and I keep cycling from one fibro flare up to the next.  It's not a lot of fun, I promise you!

I'm not going to lie to you and tell you that I'm handling this well.  I've been whiny and weepy, and I've had a daily pity party.  I'm tired of feeling this bad, and I can't imagine having to live this way for 30 more years.  That being said, I am here for the long haul!  I will keep fighting the decline of my body with everything I have, because, as the saying goes, I'm not gonna let the bastards win!

Recently, I have heard a lot of people talking about committing suicide.  The common thread that runs through the talk is something along the lines of, "If I was brave enough, I would kill myself."  Brave enough?  If you had the courage?  These are the most cowardly words I think I've ever heard in my life!  Trust me, it doesn't take courage to check out.  It takes courage to keep living this life with the chronic pain and everything that goes with it!

I know what I'm talking about because a few years ago, I tried to commit suicide, and I was a complete failure at it, and I thank God everyday for it!  It didn't take courage for me to decide to check out.  It took cowardice, fear, and extreme selfishness.  Sure, I wouldn't be here to deal with the physical and emotional pain that I live with everyday, but wow!  What a mess I would be creating for my loved ones to live with!  How very selfish of me!

It takes courage to live every day with the misery of chronic pain. It takes courage to face the people who don't believe the things that we go through day in and day out.  It takes courage to fight through the exhaustion that this condition forces on us.  It takes courage to reach up through the darkness of depression that descends on each and every one of us.  It takes far more courage to live.

My suicide attempt was almost five years ago, and my children are just now starting to trust me again.  Not long ago, I was having a day when I was wallowing in self-pity.  I wasn't going to commit suicide, in fact it was the furthest thing from my mind.  But when I finally unlocked the bedroom door and came out, I discovered that one of my children had hidden my pain medication, just in case.  How could I have done this to my precious babies?

I spent two weeks in a mental institution following my suicide attempt, and it was the best thing that ever happened to me.  And, if I ever have those feelings again, I will immediately check myself back in.  There is no shame in seeking help for the black hole of depression, but there is shame in making sure that you force those who love you straight down in that same hole.

I was convinced that no one loved me.  I was convinced that they would be better off without me.  I was convinced that they wouldn't miss me.  I was convinced that their lives would be so much better off, that they wouldn't even mourn my passing.  I couldn't have been more wrong about each and every one of these thoughts.

If you truly want to be brave, then you have to keep fighting against the demons in your life.  You have to realize that you are important to the people in your life.  You have to understand the damage you will do to those who truly love you, and believe me, they do truly love you.  Be proud of the fight you are fighting.  Regardless of the doubters and haters around you, you are stronger than they will ever be.  And your life matters, more than you will ever know.

Monday, August 20, 2012

Be Careful What You Wish For

Because of complications from my knee surgery, I have basically been on bed rest for the last few weeks, or, as I call it, forced captivity.  I am supposed to do as little as possible, in order to make sure that I don't spend that much time on my legs.  At first, I thought this sounded wonderful.  I have told you that because of my husband's condition, almost all of the errand running and things of this nature falls on my shoulders.  There were days when I thought that I couldn't move another inch after a busy day, and I resented the fact that everything fell on me.  I wished that for even a few days, I could have a true break from all the things I have to do.

As the title says very plainly, be careful what you wish for!  I am absolutely going crazy right now.  I'm sick of looking at my house.  I'm sick of the constant mess and clutter.  I'm tired of expecting three people of the male persuasion to do things the way I want them done.  Honestly, I never think that I do enough.  I feel guilty that I can't do more for my boys.  I feel guilty that my house is never as clean as I would like for it to be.  I feel guilty about being in pain all the time.  I'm starting to realize that I do more than I have given myself credit for.

Right now, I would give anything to be able to walk down my back steps, get in the car, and just go drive around by myself.  I am one of those people who needs some time to herself almost everyday.  Since I had my surgery, I am never alone!  For some reason, I can't sleep in my bed anymore.  The only place that I am comfortable is sitting and sleeping in my recliner.  I have people around me 24 hours a day!  I love my family, but I wouldn't complain if they all vanished for about seven or eight hours.

I am also noticing that my back, and other muscles, are hurting more than usual.  I am attributing this to the fact that I am not moving around nearly as much as I used to.  I won't be running a marathon.....EVER!  But I do know that once I'm released from this forced captivity, I am going to try and be a little more active.  I think this will help me in more ways than one.  I am so tired of sitting around, doing basically nothing.  It is what I wished for, but apparently, it wasn't what I wanted!

Wednesday, August 15, 2012

Fear

I have a confession to make.  I am living my life in fear.  Now, you wouldn't know it to look at me, and you probably wouldn't even guess it if you sat down and had a long heart to heart talk with me.  But there it is...out in the open.  I am living my life with a hearty helping of fear.  Now, this is a closely guarded secret, but I am realizing that it is our secrets that can make us sick, emotionally.  I'm trying to let go of some of those secrets.


As I have mentioned before, I am going to be 50 very soon.  When I was growing up, and I saw people who were my current age, I assumed that they had it all together, and they couldn't possibly be afraid of anything.  They seemed to be so much wiser than me, and they seemed to have all of the answers.  Now, I'm thinking that maybe they didn't have it quite as together as I thought they did.

There are so many things that I'm afraid of right now, and I really don't have any of the answers.  The purpose of this isn't to give you answers on handling the fear.  I think the purpose is sort of like sending a probe into outer space, trying to find out if I'm all alone in feeling this way.  So.  What are some of the things that I am afraid of?

I'm scared of my own bad health.  I'm afraid of the thought of living in this kind of pain for the rest of my life.  I'm afraid of living the rest of my life in the limited way that I'm living it right now.  I'm afraid of getting worse than I am right now.  I'm afraid of not having anyone to help me when things get worse.  This is just a sampling of the things I am afraid of regarding my own health.

I'm afraid of my husband's bad health.  The condition that he has is hereditary and progressive.  He is already confined to a wheelchair, he can't drive, he can't get in and out of our house without help.  What is going to happen 5, 10, 20 years down the road when he needs more help than I can provide?  How do you tell your husband, who you love, that you can longer care for him and you are going to have to put him in a nursing home for his own good?  The thought of this scares me to death.

I mentioned that my husband's disease is hereditary.  There is a 50/50 chance that our sons will develop the condition in time.  We have three beautiful, healthy, active boys.  This condition usually strikes in the prime of life, between the ages of 35-45.  I'm terrified of the effect that it will have on them, their wives and their children.  I know how hard it's been for my husband, and for me, to deal with.

These are just a few of the things that I'm afraid of.  I don't have any answers, and I don't know how to get rid of these fears.  There are times when I wake up in the middle of the night with that breathless feeling you get on a roller coaster.  Sometimes, I think that the answers to these questions just aren't out there.  But, despite the fears that I have, I refuse to let them rule my life.  We have learned to coexist with one another.  I have learned that I have to keep going, whether the fear is there or not.

So, now I have released that probe and I want to know what you are afraid of.  Are you afraid of health problems?  Are you afraid for what the future holds for your children?  Are you afraid of how you will take care of your aging parents?  What are you afraid of? Share with me!  There is strength in numbers, and maybe someone has the answer to help you with one of your fears, and maybe you have the answer to help me with one of mine.

Saturday, August 11, 2012

Your Disability Doesn't Define You

I am disabled, but that isn't who I am.  I have fibromyalgia and suffer from chronic pain due to spine defects.  I also have osteoarthritis in most of my joints, with my knees, back and hip being the worst.  I have days when walking to the bathroom is the most that I can do in a day.  I have days when I sit in my recliner, crying because the pain is so intense that my medication seems like a placebo.  And, I have days when I feel like bargaining with God to just take it all away.

Not a very pretty picture, is it?  And while I live with all these issues, I refuse to allow these things to define who and what I am.  I'll be honest with you.  I've always believed that everything we go through has a purpose.  But I am hard pressed to figure out what the purpose of this suffering is.  That being said, I love my life and I wouldn't trade it.  I am disabled, but I don't let it define me.

I am a woman, a daughter, a sister, a wife, a mother.  I am a friend, and I try to be a comfort to those who need comfort.  I love my family with all my heart, and they love me in return.  I love a good laugh, and I even love a good cry sometimes.  I am still learning, despite the pain that I deal with.  I refuse to allow this thing called a disability to become the only thing I live with.

Have I had to change my life because I have a disability?  The short answer to that question is yes, absolutely.  But the real answer is longer and more complex.  The changes I have made have been more superficial than it may appear at first glance.  One of the first changes that I made was swallowing a little pride.  I used to go the grocery store, or Walmart, and walk the store.  I would be in excruciating pain when I was finished, and the rest of my day would be shot.  So, now, I get one of the riding scooters that the stores provide.  I have learned to ignore the stares of other shoppers.  Because I have adapted to a new way of doing things, I am still able to go to the store instead of always having to depend on someone else to do it for me.

Because of my disability, it is difficult for me to make plans to do things with my friends.  And even though the person I am inside hasn't changed, my physical ability and stamina are no longer the same.  Some friends can't handle this change and drifted away.  Others left because they couldn't depend on me.  But I still have a wide circle of friends that I spend time with everyday.  Now, my socializing is done primarily online.  But through this, I have made life long friends.  We may have initially come together through our disabilities, but we stay friends because of who we are.

I am still the same mother I was when my boys were babies.  I still love them with the same intensity that I did the first time they were put in my arms.  I am still able to wipe away their tears, share a joke, and cheer them on as they grow into young men.  They don't see me as a disabled person, they simply see me as mom, and I wouldn't have it any other way.

Despite whatever disabilities we may have, we are still the same person we always were.  Who we are is much more internal than external, and it is important that we embrace that part of our selves.  In the long run, does it really matter if you can walk from the back of the parking lot to the front?  Not really.  Does it really matter if you can sit in an office for eight hours a day?  Not really.  The things we can or can't physically do don't define who we are.  That definition of self comes from the inside.  Love yourself and your family.  Show compassion to others.  Learn to forgive.  It won't make it easier to walk across the room, or do a load of laundry, but it will make you a happier person in the long run.

Wednesday, August 8, 2012

A New Definition of Friend

I've never been a person with a huge circle of friends.  Because I have dealt with social anxiety disorder most of my life, making friends has never been very easy for me.  On top of that, I have a mild form of agoraphobia and large crowds of people make me incredibly uncomfortable.  I'm great at small talk, but it's difficult for me to open up to people, and you can only talk about the weather for so long!

In addition to this, dealing with the limitations of chronic pain make friendships difficult.  At first, people are very understanding and they want to do what they can for you.  After a while, however, it gets very hard to be a friend to someone you can't always depend on.  After you cancel on a person so many times, eventually, they just stop calling.  And while it hurts to lose friends due to something you have no control over, I can understand why people drift apart.

After living with chronic pain for quite awhile, I had sort of accepted the fact that I was never going to have close friends any more.  I told myself that my husband and sons would be enough.  But the truth was that I really did miss that relationship of having a good girl friend.  I missed having someone I could talk to about life in general, and having someone to share a laugh or a cry with.  I missed having someone to just hang out with.

Thanks to my lovely sons, I eventually joined the 21st century and joined Facebook.  Wow!  What a fantastic gift my sons gave to me!  At first, I simply used it as a tool to catch up on old friends that I had lost contact with over the years.  It was so nice to learn how my old friends lives had turned out over the years.  Never in a million years did I think I would make new friends!

After being on Facebook for awhile, I was diagnosed with fibromyalgia.  I started out looking for groups which could provide me with information about the condition.  Well, I got information, but I also developed a whole new group of friends!  I met people from all over the world who were dealing with the same things that I was dealing with.  I met people who actually understood what I was feeling, both physically and emotionally.

I belong to a group for people who suffer with chronic pain, and I have made some of the best friends I will ever know.  Some, I have met in person, and others I will probably never meet in person.  But these people know me better than any other friends I have ever had.  They have opened their hearts and lives to me, and I have done the same for them.  Through these groups, I have discovered a new definition of friend.

I am able to be brutally honest with these new friends.  I don't feel the need to say I'm fine when asked, "How are you doing today?". What a blessing!  And because we are from all over the world, there is always someone around to talk to when things aren't going so well.  I have also been blessed with the ability to be there for others when they need a shoulder to cry on or a friend to share a laugh with.

I may never meet many of these people in the "real" world.  I don't think that I will ever be able to travel to Australia or Europe or India.  But I know that some of the most wonderful people on Earth live in these far flung places, and I know that they love me as much as I love them!  The world doesn't seem to be quite so large anymore, and I don't feel quite so alone anymore.

Thursday, August 2, 2012

The New Discriminatory "OK"

Discrimination of any kind is wrong.  However, there always seems to be a group of people who are discriminated against that we have a tendency to close our eyes to.  At one time, we closed our eyes to the discrimination against African Americans, and many still turn their heads to discrimination against those whose sexual preference is different from their own.  At the moment, it seems to be OK to discriminate against the handicapped.

Now, those who are visibly disabled are less likely to be openly discriminated against.  However, I know many people who have been confined to wheelchairs who haven't gotten jobs which they were more than qualified for.  We even have laws making it illegal to discriminate against the handicapped.  But that doesn't mean it doesn't happen every single day.

Not long ago, there was a group on Facebook, urging people to actively discriminate against people with handicapped parking permits.  They were even trying to get people to steal the parking permits out of people's cars, and to steal the handicapped parking signs out of parking lots!  I think everyone would probably agree that this is blatantly wrong.

But what about those who discriminate against the handicapped in more subtle ways?  The other day, a friend of mine was running to the grocery store to pick a couple of things up.  She has to use a cane to walk, and frequently has trouble even walking with the cane.  As she got out of her car, in a handicapped parking space, an older man proceeded to stare at her and direct rude comments at her.  She was shocked and hurt, and didn't respond to his obvious disrespect.

I have experienced things like this myself.  At one point, someone loudly said, "If you weren't so fat, you wouldn't need that handicapped spot."  The pain, and shock that I felt at this was overwhelming.  But I didn't respond.  I held my head up and went into the store, but on the inside, I was humiliated.  I have also had to park yards away from a store, because people who were perfectly fine had taken most of the handicapped parking spaces.

When did it become alright to treat people with disabilities in such a shocking manner?  When did we quit treating people with basic human decency?  When I was a little girl, my mother always told me that if I couldn't say anything nice, then don't say anything at all.  I've tried to live by this rule, and I've made sure that my children understand it.  I would never have tolerated rudeness like this when they were little children.  Why do we tolerate it from adults?

I have decided that from now on, I'm going to stand up for myself. If someone feels the need to make a rude comment about my invisible disability, I think I'm going to feel the need to educate them about fibromyalgia, spondylosis, sciatica, and a host of other problems.  If I see someone making comments directed towards others who are disabled, I'm going to stand up to the bully, because that is exactly what they are.  I know that not everyone will feel comfortable with this, but I think it's time that we bring our invisible disabilities out into the light of day.  It's time we let the world know that it is most definitely not OK.

Tuesday, July 31, 2012

How to do Less When You Feel Like You're Doing Nothing!

Yesterday, I went to see my knee surgeon.  I walked in, feeling very proud of myself that I was only using the cane.  I was even feeling really good because I actually put on makeup, fixed my hair, and wore a dress.  These things have become a vanishing art for me lately.  I took my son, Jack, with me, simply because the walk from the parking lot is a little long, and I thought I might need an arm to lean on, which I did.

Now, let me mention that I know my knee doctor quite well.  Being the mother of three active teenage boys, Dr. M. has had the opportunity to treat two of them, even performing surgery on the oldest.  He is frequently telling my boys to stop hurting themselves, because they are going to make their mother old before her time.  Dr. M. has a wonderful bedside manner, and I always enjoy seeing him.

So, they took us back to the exam room, and I must say I enjoyed the one on one time, talking with Jack.  We could hear the doctor talking with other patients, and dictating into his little recorder as he walked from one room to the other.  The chair I was sitting in was right next to the door, and I felt this warm hand reach into the room and rub my shoulder.  Dr. M kept on going, though, on to the room next door to mine.

A few minutes later, he walked into my room and told me that I looked wonderful!  A girl can always use another compliment.  He spent a minute or two talking to Jack, telling him he was glad he hadn't been to see him in a while.  Then Dr. M. took his first look at my knee.  He looked up at me and said, "Mama," he has called me that for years, due to seeing the boys, "You are doing very well.  The incisions look wonderful."

I thought at that moment that I was doing everything right, and again, I felt quite proud of myself.  And then he said something that I didn't see coming.  Dr. M. looked me in the eye and told me that I was overdoing it!  How could I possibly be overdoing it?  I thought to myself that I haven't done anything for the last six weeks.  Yes, I've run a few errands, and I've gone to the grocery store once.  Overdoing it?  Me?

Dr. M. pointed out a couple of areas of swelling and told me that those were places with fluid in them.  He said that for the next six weeks, he wants me off my leg as much as possible and to start wearing the ACE bandage wraps again.  He also told me to keep me leg elevated whenever I'm sitting and to use ice frequently throughout the day.

I started to tell him that I had to get back to my old self, but he cut me off.  He told Jack that was to make sure that Mama stayed down, and to take care of me.  Of course, Jack told the doctor he would handle it.  At that moment, I felt rather ganged up on!  Then, I told Dr. M. that I just didn't feel like I was getting over this surgery as fast as I should have.  I laughed and said it had definitely shown me that I am now almost 50 years old.

Dr. M. smiled and said, "Don't you hate it when you finally figure that out?  But you have many other things going on with you, and with your fibromyalgia, it's going to take your body much longer to get over the surgery."  As much as I didn't want to hear that, It felt good to have someone acknowledge that the fibro was affecting me as much as it is.

So, here I sit, trying very hard to do less than I've been doing for the last six weeks.  Dale and the boys are enforcing the rules, and they are taking very good care of me.  I hate asking them to go and get me a drink, when I feel perfectly capable of doing it myself, but I also don't want to mess up the lovely repair job Dr. M. did on my old knee.  I'm slowly learning that it is possible to do less than nothing, but it sure isn't easy!

Monday, July 30, 2012

The Pain Caused by Others

The other day, a friend of mine, who also deals with chronic pain, was enjoying an outing with her family at a local farmer's market.  Like me, Tracey (not her real name) walks with a cane.  As she and her family were walking through a crowded area of the market, some idiot woman jerked her child away from Tracey, and loudly exclaimed, "Don't get near her!  Whatever she has is contagious!" This horrible remark was delivered with the requisite dirty look.  Needless to say, my friend was hurt and shocked by the incident.  

I cannot tell you how angry I was upon hearing this!  So now, walking with a cane denotes a contagious illness?  And if a cane caused this woman to yank her child out of Tracey's path, what other people does this woman consider a threat to her child?  I am sure that if this woman had her way about things, all of us with disabilities would be returned to the family attic of a century ago!

I remember in first grade, we had a young boy in my class with cerebral palsy.  Many of the children in the class avoided David.  He walked funny, he drooled, and he could be very difficult to understand.  And I was drawn to him.  David and I would walk around the playground at recess, holding hands.  Once you got to know him, he was the neatest kid!  I told my mother about my new friend, and she told me what a sweet girl I was for being his friend.  And, after awhile, I stopped noticing the things that were wrong with David, and only saw the things that were right with him.

As angry as I am with this ignorant woman, I feel the most sorry for her child.  This little girl is going to grow up hating those who are different from her.  It is attitudes like this which lead to discrimination of those who are different, whether it is race, sexuality, or disability.  And, if history repeats itself - which it often does, this little girl will grow up and pass her hatred on to her children.  It makes me more sad than angry, in the long run.

If I had a magic wand, I would take this little girl, and others like her, to London right now.  Of course, the Olympics are a wondrous spectacle, but that isn't where I would take her.  I would bypass the regular Olympics and go straight to the Para-Olympics.  I would show her that being different does not mean being less than.  I would show her world class athletes, competing to the best of their abilities, and doing things that I wouldn't be able to do in a hundred years.  And I would try to teach her that just because someone looks different from you, it doesn't mean that they aren't exactly the same on the inside.


Saturday, July 28, 2012

Looking for the Old Me

I'm looking for the old me, and I can't find her anywhere!  Ever since my knee surgery, it seems like something goes wrong every time I turn around.  Everyone, including my doctors, is telling me that I am doing so good since my surgery.  They are all amazed that I'm already walking so well, and they tell me to keep up the good work.  And I usually just smile and tell them thank you.  I don't know how to explain to them that my body has launched a full scale attack on me.

Like all of you, I'm used to dealing with my chronic pain, and most of the time, I can work around it.  Partly because I want to, and partly because I have had no other choice, I have stayed very active.  I have continued to do all the errand running, kid-chauffeuring, chief cook and bottle washer duties that I always have.  I knew that after my surgery, I would be out of commission for awhile, but I also thought that it wouldn't last nearly this long!

I would love to go to my doctor and tell him what's going on with me in the hopes that he could "fix" it.  But how do you start to explain to another person what's wrong with you when you can't even put your finger on it yourself?  I don't think he would know what to do with "My body is attacking itself.  Make it stop!".  He would be very sweet about it, but I can already see the puzzled look that would come across his face.

I know that some of this had to do with the fact that I went about two weeks with virtually no sleep.  Luckily, that has started to work itself out, but I'm still not feeling any better.  I'm running strange fevers for no apparent reason, and my muscles feel like someone has taken a baseball bat to them.  Normally, I would just blame the fibro for the muscle pain, but this feels different.  I've been taking an antibiotic for a bad tooth, so you would think that I wouldn't be running a fever.

I'm also having a lot of pain and stiffness in my fingers and my wrists.  I normally type close to 60 words a minute, but now, I'm typing like a kid taking her first typing class.  I'm having to stop between each sentence to stretch and rub my hands and wrists.  I'm also starting to have headaches and neck pain, and I've never had problems with those things.  Other things are hurting as well, but I'm sure you are getting the picture.

What energy I did have has gotten up and left, and all the caffeine in the world is doing nothing to restore it.  I'm tired all the time, and I just feel weak as a kitten.  I know that my family has gotten really tired of sandwiches and microwave dinners, so last night I decided that I was going to cook a big dinner.  I made meatloaf, green beans, mac and cheese and stuffing.  At one point, I was standing in front of my stove with tears running down my face.  Thank God for Matt and Jack!  They jumped in and helped me get things finished.

So, if you see the old me, please tell her to come home!  All is forgiven, and I promise not to complain so much about the pain, and how she is falling apart.  I promise not to think that she is Super Woman, and will quit pushing her so hard.  I promise to say she needs a break, and then stick to my guns!  Hopefully, she's already on her way!

Monday, July 23, 2012

My Fight Against Exhaustion

Tired.  Spent.  Done.  Run down.  Running on empty.  Shattered.  No matter how you say it, those of us who suffer from chronic pain know what it's like to be absolutely exhausted.  Some of us suffer from insomnia on a chronic basis, and others only suffer from the occasional sleepless night.  Regardless of how often you go without sleep, the results can wreak havoc on you.

Everyone, whether they suffer from chronic pain or not, experiences some problems sleeping at one time or another.  How many of you have worried about a problem at work or school, and spent the night tossing and turning?  I know I have, on more than one occasion.  In fact, I have suffered from insomnia since childhood.  I remember being a little girl and being told that I had to stay in the bed whether I could sleep or not.  This made me even more miserable.

As I've gotten older, my insomnia has gotten more severe.  Today, no one tells me that I have to stay in the bed, but I would give anything to just be able to lie down and sleep.  Since my knee surgery, my sleep has been almost non-existent, and I don't really know why.  I can't find a comfortable position, and I'm spending most nights traveling from my bed to my recliner and back again.

I do take pain medication, and another medication to help me sleep.  About an hour after taking these night time meds, I am literally falling asleep in my chair.  I will get up, go get in the bed, and within just a few minutes, I'm asleep.  Sounds good, right?  Well, it just doesn't last!  Within one to two hours, I am awake.  Sometimes pain from my knees or back wakes me up, and sometimes, I have no idea why I'm awake.  And the effects of only sleeping a couple of hours a night are really starting to get to me.

My pain levels are really high right now, and I think that's because I can't get my body to relax.  I'm carrying around so much tension in my muscles that I constantly feel like I've been beaten.  I have a headache that won't go away, and I really don't get that many headaches.  And I'm starting to get very emotional.  I cried off and on all day yesterday, and then I would get mad at myself for crying about something so stupid as not sleeping.  I'm also getting really mean.  It didn't matter what Dale or my boys did or said yesterday, it was wrong.  And I knew that I was being nasty to them, but I couldn't stop!

During the day, I can fall asleep at the drop of a hat.  I will sit in my recliner with the TV on, and the next thing I know, I'm asleep!  I've been trying to keep myself awake during the day, because I think that the naps may be keeping me from sleeping at night.  I've given my family orders not to let me sleep more than an hour at a time during the day.  But unfortunately, even on the days when I don't nap at all during the day, I'm still not sleeping at night.

Something has got to give!  I feel like I'm completely shutting down, and not in a good way.  I don't know if any of you have ever felt this way before, but it's like I can feel my body vibrating with exhaustion.  You can leave comments on my blog, so I want to give you a challenge.  If you have any sure fire sleep inducing tips or tricks, post them here!  I know that I'm not the only person out there who isn't sleeping, and maybe we can help one another find that strangest of all things - a good night's sleep!

Tuesday, July 17, 2012

Heartbreak

As we all know, pain isn't always physical.  Most of us have had some sort of emotional trauma in our lives, and the pain from that is sometimes worse than the physical pain we experience everyday of our lives.  I am a survivor of childhood sexual abuse, and I have made no secret about it.  I believe that if others, especially children, see that we have nothing to be ashamed of, they will be more comfortable in coming forward and reporting this heinous crime.

Watching all the media coverage of the Jerry Sandusky trial in the last few weeks has brought a lot of those old emotions back, and I have suffered for the victims of his crimes.  I have cried for those boys, and celebrated the fact that they were brave enough to finally come forward and testify against this monster.  And I have cursed Sandusky, and those at Penn State who covered for him all of these years.  The whole thing sickened me!

In my humble opinion, Joe Paterno and the other officials at Penn State University turned a blind eye to what was going on right under their noses.  The reputation of the University, and it's sainted football program, were more important to them that a group of helpless, at risk little boys.  I'm shocked and sickened that not one person lifted a finger to stop the abuse that was happening.  I'm sure if it was one of their children, they would have been screaming it to the rafters, but these little boys who were, for the most part, already troubled, were not important to them.  They hid their heads in the sand in order to pass the buck.

Yesterday, I was looking at the website for one of our local TV stations, and they were asking what the public thought about the fact that they had taken Paterno's "halo" out of the mural on campus.  Most people thought that it was the right thing to do, and that it didn't go far enough.  And others, like me, felt that his statue should be taken down.  I kept reading, and then I came across something that stopped me in my tracks.  A few people were blaming the children and their parents for the whole debacle!

I was absolutely shocked.  One person said that everyone should stop blaming the Penn State officials and Paterno.  She said that if the children had come forward sooner, none of this would have happened!  She also said that it was the parents fault for not making their kids speak up sooner!  I could not believe that anyone would think that way in this day and age, and then I was further shocked that other people agreed with her.

Well, this really got my dander up, as the old saying goes!  I couldn't just sit there and not say something, so I actually wrote about my childhood abuse.  I told them that I was raised in a good home, with lots of love.  I told them that I was taught to tell if someone ever did anything inappropriate to me, and even then, I didn't tell my mother until I was 21 years old.  I explained that these boys were at risk children who had been let down by the adults in their lives over and over, and they probably believed that no one would help them.  I was just so angry.

I've never gone public with my abuse in such a big way.  But, I believe that those of us who have gone through childhood sexual abuse and survived must speak up about it.  We have a responsibility to let today's victims know that they can survive this, and even thrive.  We have to let them know that there is no shame in being a victim.  We have to let them know that nothing that happened to them is their fault.  And we have to let the idiots of the world know how very wrong they are!

Thursday, July 12, 2012

I'm Going to be Fifty, and I'm Just Now Realizing It!

I know how old I am.  In fact, if you ask me how old I am, I'll rattle off the number without even thinking about it.  Chronologically, I am 49 years old, and I will be 50, in September.  But, despite my physical failings, I've never felt that old.  In my mind, I'm still in my 30's. Now, most days, I feel like I'm 80 physically, but my mind has never felt old.  Perhaps the fact that I didn't have my children until I was in my 30's has kept me younger.  And there is the fact that my brain surgery that I had as an infant caused some damage in allowing me to mature.  But for the most part, I've never really related to the fact that I will be turning 50 years old this year!

The after effects of my recent surgery have reminded me that I am most definitely not as young as I used to be.  The last time that I had surgery, I was 28 years old.  It was another knee surgery, and like this one, it was done on an out patient basis.  I had the procedure on a Wednesday or Thursday, and was back to work on Monday.  In fact, I even made it to Happy Hour with friends a week after the surgery, and never thought anything about it.  It has now been about a month since this surgery, and I'm still trying to get back to my old self.

I'm definitely getting older.  I'm not bouncing back after this surgery.  I am tired all the time, and I don't feel like me right now. I can't seem to sleep more than a few hours at a time, and I wake up before the chickens these days.  Last night, I went to bed at 10:30, and I was up at 4:00 am!  And while my knee feels much better, the rest of my body is staging a full scale revolt.

Right now, my back is killing me, and my fibro has gone into a full flare up.  There isn't a part of me that doesn't hurt. The other day, I was walking across the living room, using my cane, and I realized that the combination of the back pain and the fibro had me walking stooped over.  I looked like I was 90, not 50! On top of those aches and pains, I've also gotten a cold.  As far as I'm concerned, there is nothing worse than a summer cold!  My mind keeps trying to tell me that I'm really not all that old, but my body has other plans.  Today, I'm feeling every minute of my almost 50 years!

I used to think that people who were 50 had one foot in the grave.  I remember being in sixth grade, and our teacher telling us that in the year 2000, we would be the same age that she was.  I was convinced that I would never live that long!  Today, 38 doesn't seem that bad!  What I wouldn't give to be able to turn back the clock to those days.  I wouldn't have fibro.  I wouldn't have the chronic back pain.  And I would still be oblivious to the fact that I really was getting older!

Thursday, July 5, 2012

First Sight of the Empty Nest

This week has been extremely quiet.  Of course, you know that my oldest son, Chris, no longer lives at home.  And my two younger boys, Matt and Jack, have been spending time with friends.  About three weeks ago, Matt went to Kentucky Boys State, which is a five day camp for the top 100 students in the state.  The day he got back, he left to spend time at his best friends house and he's been gone ever since.  Jack left on Monday to stay with one of his friends and won't be back until Sunday!

I have always jokingly said that I couldn't wait til my kids were grown and gone, and yes, it was a joke!  I adore my sons, and for the most part, enjoy their company.  However, I have always believed that our purpose as parents, is to raise our children to be productive members of society.  I looked forward to the day when they left for college, because that meant that I had done a good job in preparing them for life in general.  I'm still looking forward to that day, but I really didn't realize how much it would affect me!

The last few days have been so quiet around here!  Now, when Jack is home, things are never calm and quiet.  That boy has more energy than the Energizer Bunny.  He literally bounces off the walls.  Jack can not walk through a room.  He jumps across the room, touching the ceiling as many times as possible.  Jack rarely sits still, and he has two volumes - loud and louder!  The first day that he was gone was actually rather nice.  I didn't have to say, "Jack, quit jumping!" once.  And then, the quiet started to get to me, and I kind of missed the jumping!

Matt will be a senior in high school when school starts again, and it is so hard to believe that he could be that old.  We are looking at colleges, and will probably be taking a few trips this fall to look at schools.  At the moment, he seems to be focusing on two schools.  Vanderbilt and the University of Louisville are at the top of the list.  I couldn't be happier about those two!  At first, he was thinking about schools on both the East and West Coasts.  I was fine with that - until the time to actually start the process got closer!

Why am I so happy with Vanderbilt and U of L?  They are both close to home!  Vandy is only about 2 1/2 hours away, and U of L is only 30 minutes from us.  I like the idea of being able to go see him if I want to, and I like the idea that he can come home for the weekend.  So much for being ready for him to be grown and gone! Of course, I want him to love college like I did (although, I hope he doesn't discover partying like I did!).  I want him to make loads of friends, and actually want to stay at school over the weekend.  I just want him to come home some, too.

So, I am starting to prepare myself for the empty nest.  It won't be completely empty for three more years.  Jack still has three years of high school to get through, and I know that I have three more years of telling him to stop jumping.  I know that I have three more years of having his friends tromping through the house, and I know that there will still be days when I wish that things were quieter.  But I also know that the day is coming when I will wish one of my kids would come bounding through the room, just being a noisy teenager.  They really do grow up too fast, and I don't think we can really ever prepare ourselves for the day that they leave.  I'm proud of them, and I'm ready to see the men they will grow into.  I'm just not ready for my chicks to leave the nest!