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Saturday, April 28, 2012

It's Always Something With You

I am lucky in that the majority of my family understand my problems.  They have taken the time to learn about them, and they are sympathetic to the pain that I live with every day of my life.  My husband lives with a chronic illness and he is very respectful, for the most part, of the things that I go through.  My two youngest children do every thing they can to help make my life easier.  Of course, there is always that exception to the rule, and my exception is my oldest son.

Today, I am not feeling well at all.  My back and legs are really hurting and my bursitis in my right shoulder is acting up.  I'm having a lot of pain, and my medication isn't doing a lot to relieve that pain.  Just a short while ago, I had to go pick Chris up at a friend's house.  While I was waiting for him to come out to the car, I took a few minutes to call my pharmacy to check on one of my medications.  I was still on the phone when he got in the car, and he asked me who I was talking to.  Since I was on hold, I told him what I was doing.  His response was to roll his eyes, and tell me that I take too much medicine.  I held my tongue and didn't respond, because this is Chris's normal response to me.

As we were driving, I made a turn and said "Ouch!".  The turn aggravated my shoulder, which is where I have bursitis.  Chris asked me what was wrong, and I told him that my bursitis was acting up.  Well, that did it.  Chris looked at me with disdain and said, "Geez!  It's always something with you!  First, you have a bad knee, then a bad back!  Now you have that stupid fibro and restless leg syndrome!  Why do you need to add on something else?"  My immediate response was to yell at him!  I said, "Do you think I enjoy this?  Do you really think I'm having fun, hurting all the time?  I can't help what's going on with my body, and I'm not making this up!"

Now, his opinion shouldn't bother me.  He's 19 years old, and as a general rule, most boys of this age are genetically stupid, and if we're lucky, they grow out of it.  I also know that my son is very judgmental,  and chooses to believe that most of my physical problems are products of my imagination.  I have tried to educate him about what's going on with me, but he chooses not to believe me.  And even though I know these things, my feelings are hurt every time he makes one of his snide comments.

I also had to make a stop on the way home to pick something up.  I told him this, and he demanded that I take him home before I made my stop.  I refused because it was out of my way.  Well, he complained the entire time!  Again, I wasn't surprised.  This stop took less than five minutes, and we were only another five minutes from the house.  Once we got home, I asked him to carry the bag into the house.  Well, this was another chance for my son to slam me.  He muttered that the only reason I insisted he go with me was to make him carry the bag into the house.  And he added something about me being lazy.  I tried to grab the bag out of his hand at this point.  Childish on my part, I know, but I had just had enough!

Chris kept the bag and carried it in the house.  I sat in the car for a few minutes, because I had started to cry and I didn't want to be crying when I went in.  Chris and his Dad are not getting along well at all, and I knew if I was crying when I walked in, it would start another huge argument between the two of them, and I just didn't feel like dealing with that on top of everything else.  I have to admit, as I sit here writing this, the tears are starting to come again.

It hurts to have someone you love so much have absolutely no compassion for what we are going through.  It hurts to be told that we are over exaggerating the pain that we live with day in and day out.  It hurts to be told that we are making these things up just to get more attention.  It hurts to be so completely dismissed.

Compared to some, I am lucky.  I only have to deal with one person feeling these things about me.  Many others get no compassion from the people in there lives.  They are living completely alone, even in a house full of people.  My heart goes out to each of you going through this.  I can't imagine not having anyone who will look at you and tell you that they are sorry that you are suffering.  And maybe, it is always something with me, but I didn't choose any of these things that I deal with each and every day.  I would give almost everything I have to live a normal, pain free life.  But unfortunately, that isn't the path I have been given.  I will keep trying to develop a thicker skin, but being told that it's always something with you just leaves one more scar on my soul.

Friday, April 27, 2012

My Babies are Growing Up

As you know, I have three teenage sons.  With the birthdays we have had, and the one coming up in a little over a month, they are now 19, 17, and soon to be 15.  It's hard to believe that they are getting older when I'm still the same age!  For the most part, I'm happy to see them growing up, and starting to plan their own lives.  But there are some days when I so miss the time when they were little.  It's hard knowing that I am no longer the most important person in their lives.

As parents, I believe our primary job is to raise our children to be responsible, honorable adults.  We need to make sure that they have a strong moral compass to make intelligent decisions.  But we also need to encourage them to reach for their dreams.  As a teenager, I wanted to be a singer and actress.  I was good at it, and started out with this as my college major.  My father, however, saw this as a disaster.  He never encouraged me to follow my heart, and as a result, I ended up with a college degree in something I hated.  Now, my boys don't have dreams of being stars, but I try to help them discover who and what they want to be when they grow up, and help them find the best path to reach that goal.

I miss the days when my boys were still little.  I miss having them curl up in my lap for a story, or just because they want a hug.  I miss getting in the floor with them to put together legos or playing with dinosaurs.  I still laugh about the time Chris was 10 and told me his first "dirty" joke.  I probably should have told him that it was inappropriate, but it was funny and I laughed with him.  When he was little, all Matt would read were non fiction books about animals, and I miss listening to him tell me little facts about the animals he learned about.  And I miss Jack curling up and falling asleep in bed with me, and not being afraid to call me Mommy in front of his friends.

I'm proud of my boys.  I love watching them grow, and reach the milestones that all children reach.  So far, I've taught two of them to drive, and both of them are really good drivers.  Teaching Jack to drive scares me a little, tho!  Chris has made mistakes in his young life, but he is finally starting to realize it, and is making efforts to turn himself around.  Matthew and Jack both know what they want out of life and are working hard to achieve those goals.  They are all good boys.

Tonight, Jack, my baby, will reach another milestone, and I'm not sure that I'm ready for it.  Now, over the last couple of years, he has had little "girl friends", but those "relationships" pretty much consisted of seeing each other at school and talking on the phone.  But now, he has his first "real" girlfriend, and they are going on their first date tonight.  Now, it's a group date, with several kids meeting each other at the movie, but it's still a date.  I'm happy to see him growing up to be a fine young man, but I'm not sure I'm ready for him to be old enough to go on a first date.

The time is fast approaching that all three of my boys are going to be out of the house, living their own lives.  I know that they are all going to do well in life, and I'm not worried about that.  I wish that I could still protect them from the pain that I know they will all experience as life goes on, but that isn't my job anymore. However, I will always be there with open arms to comfort them when life gets painful, as we all know that it can.  And I will know in my heart that I raised them right, and to be good, strong men.

Thursday, April 26, 2012

Cue the Guilt

According to a dear friend of mine, I have a small but powerful old Jewish mother living inside of me.  I am not the Queen of Denial, but the Queen of De Guilt.  I feel guilty about pretty much everything, and if I can't find something to feel guilty about, I will invariably invent something.  Logically, I know that I am not responsible for everything, but I take on that responsibility like a hair shirt.  I know I do these things, and yet I can't figure out how to kick that old Jewish mother out!

As mother's, and father's, I think a certain amount of guilt comes with the territory.  We naturally feel guilty about many things, and children are also masters at making us feel guilty.  How many of you have heard "But all my friends have....(insert item of choice)!".  Quite often, this is just a ploy to get something, and we know it, and we are able to chase that guilt away.  But sometimes, the child is right.  For example, my youngest son really wants his own cell phone.  Jack is old enough to have one, and all of his friends do have their own cell phones.  Unfortunately, I can't afford to give him one.  Cue the guilt!

My boys have everything they need, but they don't always get a lot of the things they want.  When Christmas and birthdays roll around, I tell them to pick out something that they really want, and I try to get it for them.  Sometimes, they want something that is beyond my means, and I have to tell them that they are going to have to pick something else.  It breaks my heart to have to do this.  Unfortunately, living on disability isn't easy, as much as some people want to think it is.  Once again, cue the guilt.

While most of my guilt centers on my children, not all of it does.  As I've told you, my husband is confined to a wheelchair and can no longer drive.  I feel guilty when I don't feel like running all the errands it takes to keep a household going.  I know he doesn't mean it that way, but Dale piles more guilt on my shoulders, and I'm all to ready to shift the load a little to accommodate the new guilt.  I may say that I don't feel like going somewhere and he will look at me and say something along the lines of, "If I could drive, I would go do it, but I'm stuck in this chair", and you know what happens next......Cue The Guilt!

I know that all of these things are not because of something I did or didn't do.  They are simply facts of my life. My disabilities are not something I have chosen.  My pain is not something I am proud of.  I did nothing to cause my husband's illness, and yet, I still feel guilty about each of these things.  I can't get rid of my physical problems by just wishing them away, and I don't know how to get rid of all the guilt, either.  There have been times when Dale has insisted that I have to go to the store or something, and I have looked at him and said, "Why is it that you get to be disabled all the time, but I'm only disabled when it's convenient for you?".  And then I feel guilty about that, too.

I am trying really hard to figure out how to not feel so guilty about the things I can't control.  I know that these are things that cannot be helped, and I did nothing to cause them.  I think that I will have a certain amount of guilt where my boys are concerned until the day I die, but I'm trying to not let them guilt me into buying something that we can't afford, and other things of this nature.  I'm also trying to kick the old Jewish mother out for good, but until that day when she actually packs up and leaves, cue the guilt.

Monday, April 16, 2012

The Easy Life of Disability

Not long ago, I wrote a piece about a group on Facebook angry about the disabled who had handicapped parking permits.  I am happy to announce that they are no longer on Facebook.  I don't know if this is because Facebook removed them, or they removed themselves, but I'm glad they are gone no matter the reason.  One of the things many of them said kept coming back to me, however.  They were talking about how easy it must be to live on disability.  Are they crazy?  Easy?  I think not!

First of all, getting on Social Security disability in the first place is a nightmare.  For most people, they are told that there is nothing wrong with them, or they aren't disabled enough, to qualify.  You are put through a psychological torture chamber, and trying to just stay the cause is a nightmare.  The amount of stress that you go through is more than you can imagine.  Most people end up having to hire an attorney, just to get access to money that they have already paid into the system.  You would think we were trying to take away the decision maker's personal pay check.

You are made to feel that you are making everything up, and sometimes, you even start to think that you have no hope left.  We do not want to sit on our butts, eating bon bons.  I have actually heard of being on disability described in this manner!  We are talked about like we are lazy ne'er do wells, who simply don't want to work anymore, and we think getting disability is taking the easy way out!  Yeah right!  I loved my job, and I would do anything to be able to continue working.  Sitting home on your butt all the time, as they describe it, is demoralizing.  We feel that we are worthless, useless, and unproductive.  People do assume that we are lazy and that we are living off the system.  Nothing could be further from the truth.  I have never heard one person say, "Boy, am I lucky to be in pain 24 hours a day so that I can get that fat disability check every month!".  Nothing can be further from the truth.

When you are no longer able to work, the financial hit that your family takes is devastating.  I was the sole support for my family once my husband was no longer able to work.  The stress that I went through was unimaginable.  I was always afraid that we wouldn't be able to make it from one pay check to the next.  And when I was no longer able to work, we were living on Dale's disability check.  When you have a family of five, $850 just doesn't buy what it used to!  Yeah, we were really living the high life!  Once my disability came through, things got easier, but not that much.

The trade off of pain 24 hours a day for what we make on disability just isn't worth it.  Receiving my disability didn't suddenly make me well.  You won't see secret tapes of me lifting weights, or Dale walking around doing yard work.  A gallon of milk is about the heaviest thing I can comfortably lift.  Dale is still in a wheelchair and will be for the rest of his life.  There is always more month than money, and when the younger boys turn 18, our monthly income will drop by almost $1000.  Being declared disabled did not solve any of our problems.

I would give anything not to need my disability, and so would just about everyone I know who is on disability.  We would far rather be going to work everyday.  We would rather be able to go to the store and park half way down the parking lot and walk.  We would rather feel muscle soreness because we went to the gym and started working out.  We would rather be able to take our children to an amusement park, than pray that an electric scooter is available when we go to Walmart.  Trust me, the easy life of disability just isn't all it's cracked up to be!

Sunday, April 15, 2012

On Being a Mother

Today is my oldest son's 19th birthday.  It just doesn't seem possible that Chris could be that old!  It seems like only yesterday that I brought home this beautiful baby boy, and I never knew that it was possible to love anyone as much as I loved him.  I was blessed with two more sons, and my heart grew bigger with each precious baby boy.  Being a mother to these young men is the most wonderful thing I have ever been allowed to do.

Don't get me wrong, being a mother isn't filled with bliss every single day.  Just as I didn't know it was possible to love this much, I also didn't know it was possible to worry this much.  When they are little, you worry about something happening to them.  The same worry is there as they grow older, but I think it gets bigger once they enter the teen years.  They don't realize how much you worry about them, and many times, they see that worry as you being too hard on them.  Hopefully, we eventually strike a balance between worrying and allowing them to spread their wings.

One of the goals we have as mothers, is training our children to be responsible adults.  It is so hard to let go and allow your children to make their own mistake and learn things the hard way.  No matter how old they get, we want to protect our children.  So often, we can see them making many of the same mistakes we made along the way and we want to protect them from the consequences of those mistakes.  But one thing I am learning is that we have to let them fall down sometimes and pick themselves back up.  They have to learn from experience.  And, as mother's, we are there for them when they realize that their way isn't necessarily the best way.

It is so important that we listen to our children. I was blessed with a mother who knew how to listen, and this is one skill that I picked up from her.  I have always told my children that they could talk to me about anything.  And, they have taken me up on that offer.  We have had frank, open conversations about sex, drinking, drugs, you name it.  There are times when I wish they wouldn't tell me some of the things they do, but I never let them know that.  I feel so blessed just knowing that my boys trust me.

I also know that loving our children can sometimes be heartbreaking.  I have held my sons and cried with them over break ups and hurt feelings.  I have watched them make decisions that I know are going to end up badly.  I have nursed them through illnesses and broken bones.  I have borne the brunt of their anger over things they perceived as me being mean or unfair.  And I have cherished every minute of it.

There is nothing harder in this world than being a mother.  But the converse is also true - there is nothing more rewarding on this earth than being a mother.  I'm watching my sons grow into fine young men.  They make mistakes, and they have massive failures in some of there choices.  But I see them growing and evolving and I have faith that they are going to succeed in life.  And that love I felt on the day each of them was born only grows stronger with each passing moment.



Saturday, April 14, 2012

Learning to Love Ourselves

I am a woman of a certain age.  I will be fifty years old in September, and that just does not seem possible!  I do know that fifty is not nearly as old as I used to think it was.  In fact, my mother is 71, and she really doesn't seem anywhere near Old, as I remember it.  But what is the point of this?  The point is that as women, we really aren't taught that it is OK to love ourselves.  We were raised to be wives and mothers, to be caregivers to our families, and that was the extent of it.

If you were like me, you were expected to go to college and major in something sensible, like nursing or education.  According to my father, I lost my mind upon entering college.  I began my college career as a theatre arts and vocal performance major.  I was going to be the next hot thing to hit Broadway!  To my Dad, this translated into being poor, starving artist, with no hopes of surviving.  I was strongly encouraged to change my major to something more practical.  Besides, I was going to marry my college sweetheart, and being an actress just wasn't done in our family.  Well, I caved to the pressure and changed my major to education.

To tell you the truth, I hated every minute of my time learning how to be a teacher, and by the time I graduated, I knew that I would never teach for a minute.  Children all over the country deserved better than being taught by someone who was miserable.  I married that college sweetheart, just like a good southern girl was expected to and was miserable in her marriage.  But that didn't matter.  I was a good wife, who took care of an abusive husband, worked hard, and put herself dead last.  Luckily, about 2 years into the marriage, my ex husband realized that he was gay, and that was the end of that.

Well, if I didn't believe no one could love me before that, I certainly believed it after that!  Let's see, my biological father abandoned me, my step father/adoptive father and I never really formed that close "daddy's little girl" bond that he had with my sister, and my husband decided he would rather sleep with Tim than Kim.  Yep, that pretty much did it!  If no one else could really love me, I didn't deserve to be loved.

Once I met and married Dale, I knew that I had to take care of him so well, that he would never want to walk out.  For a long time, it didn't dawn on me that could really love me just because I was me.  We had three beautiful little boys, and I threw myself into being the best mother possible.  Then, Dale became ill, and I made it my mission to take care of him.  Once I started to develop my health problems, I ignored them until it became impossible to ignore them any more.  I went to work everyday in more pain than most people ever have.  But the sole support of our family was on my shoulders.  It was my job to take care of everybody, and I was darned good at it!

When I had my back surgery, I was supposed to be off work for 6 to 8 weeks.  Now, I had a foot long scar running down my back, and I was in a metal brace from my armpits to my hips.  Just standing up took more effort than I thought possible.  I was even being paid through disability at work, and my boss understood the severity of the surgery and my need to be off work for this amount of time.  But my guilty conscience and that ingrained need to take care of everyone but myself kicked in with a vengeance.  And two weeks after my surgery, I was begging my doctor to let me return to work.  Thank God he refused!  But at six weeks, he reluctantly let me go back.

Now, between my back problems, my bad knees, and my fibromyalgia, my body has forced my to stop.  I have to take care of myself now, and it is one of the hardest things I have ever had to do.  I have a husband in a wheelchair, and three teenage boys who need all of my time and attention.  Who am I to lay down and take a nap in the middle of the day?  What right do I have to tell my boys that I don't feel like taking them somewhere?  I deal with guilt over my condition day in and day out.  But my body has finally forced me to stop and take care of myself.  And a lot of therapy has started to make me think that maybe, just maybe, I deserve to love myself.

So What do you Think?

Good morning, friends!  How do you like the new look?  It's spring and I wanted to change to something that reminds me of spring.  Also, I want to share a link to a friends blog that I think you might find interesting!  It's http://www.facebook.com/l.php?u=http%3A%2F%2Fhittingthewall.paulglover.net%2F&h=gAQFHhmq8.  I hope you enjoy reading Kelli's blog as well!  I promise, I will be writing more later in the day!  And thanks for reading!

Friday, April 13, 2012

This and That, Part 2

This post is going to be a little bit of this and a little bit of that.  When I'm trying to figure out what to write about, a lot of things go through my head, and some of them are just little things that I think are important, but they just wouldn't make an entire post.  So, I decided just to use some of those little thoughts and put them all together.  I can't promise that it will all go together, but hopefully, you will get something out of it.

One of those of you who read this blog faithfully recently came to a big breakthrough in her life.  Yes, Chris, I'm talking about you!  Chris and I got to know one another through my pain group on facebook.  We have a lot of things in common and got to know each other pretty well.  Like all of us who suffer from chronic pain, Chris had gone through a pretty dark period.  She even left our little group for her own reasons.  Well, today, Chris came home, and I couldn't be happier!  This isn't the same lady who walked away a few months ago.  She is a changed person and it is just remarkable.  Basically, Chris said that she realized she could sit around feeling sorry for herself for the rest of her life, or she could pull herself up and start living again.  And boy, did she pull herself up!  Chris sounds like a brand new person and I am so proud of her.  I hope her new attitude rubs off on me!

I read an article today by someone that I have gotten to know a little bit through facebook.  She writes extensively for Psychology Today, and I love her work.  The piece that I read today was why the things advised for people with trouble sleeping don't work for those of us with chronic pain.  So many of the things she talked about fit me to a tee!  The one that especially sounded a bell with me was about "fake sleeping".  I do that all the time, and I bet many of you do too.  Now, most of the sleep experts advise that when you can't get to sleep in 15-20 minutes, you should get up, leave the bedroom, and do something relaxing.  Well, for most of us with chronic pain, we flat out can't fall asleep in that time period, and getting out of the bed is just too painful.  So, we "fake sleep" which means that we stay in bed in our normal sleep position.  We just lie there and pretend to sleep.  Quite often, we actually fall asleep doing this, and sometimes we just rest, but for me anyway, I feel better after a round of "fake sleeping".

This is the last weekend of spring break for my boys.  They have bounced back and forth from one friends house to another, and I think they've enjoyed this break from school.  But I think I've enjoyed it almost more than they have!  I've gotten a much needed break from the normal routine.  It's been nice to fall asleep when I was able to, and not worrying about the fact that the alarm was going to sound in 3 or 4 hours.  I haven't had to do much of anything, and I have really enjoyed that so much!  But come Monday morning, we have to get back into the old routine.

The last thing on my mind today are my allergies!  I love spring, but it doesn't love me at all!  When I was in the fifth grade, about a million years ago, I went in for allergy testing.  Now, I don't know exactly how they do it now, but back in the dark ages, they would make a scratch on your back and then paint it with the allergen.  If you had a reaction, which was quite uncomfortable, you were allergic.  This testing took place over a series of days.  The last day of testing was the pollens and that sort of thing.  By the time we got home from the doctor's office, I was practically screaming in pain!  When my mom looked under my shirt, she saw a mass of bright red welts.  I spent the rest of that day lying on my stomach with ice packs all over my back.

When we went back to the doctor's office the next day, he announced that if it was green and outside, I was allergic to it.  I reacted to every single thing!  To this day, come springtime, I am miserable.  I am sneezing, my eyes are watering, and my sinuses hurt.  Thank God for claritin!

I hope you enjoyed these little bit and pieces, and I hope that you keep on reading what little things I have to write about!

Thursday, April 12, 2012

I Don't Feel Pretty Anymore

As I've mentioned before, I belong to a support group for people with chronic pain.  Today, we were talking about whether or not we feel good about our looks anymore.  The results were mixed, but the general consensus seems to be that it's not easy to feel good about your looks when you deal with pain everyday of your life.  We are in pain most of the time, we are tired most of the time, and we just plain ole don't feel good.  It take so much energy some days to just get out of the bed, much less put on makeup!

I have to admit that sometimes I go weeks without putting on a bit of makeup, and that is not like the old me!  I have always been in love with makeup.  I remember the very first makeup my mother ever let me wear to school.  It was this bubble gum pink lip stick, and I thought it was the greatest thing I had ever owned.  I have always loved buying makeup and playing with different colors and looks.  I still catch myself wandering down the cosmetic aisle in stores, just looking at all the different things, and wishing I could get one of each.  I'm almost ashamed to admit it, but I have a tackle box that I keep all of my makeup in!

But, like I said, I sometimes now go weeks without putting any makeup on.  I will go to the bathroom without turning on the light just to avoid catching a glimpse of myself in the mirror.  So often anymore, it just seems like too much effort to do anything for myself.  And trust me, wearing makeup and doing my hair has always been something I do for me!  My husband swears I look just as pretty without makeup, but then, he has brain damage!  And before you think that was mean, it's true, and we joke around about it all the time!  There are actually days that I never even put real clothes on.  I live in pajama's a lot of the time because they are soft and don't hurt as much when my fibro is really bad.  I'm not proud of it, but it is what it is!

Recently, I realized that I was really feeling down.  Things were fine at home, my fibro flares had calmed down, and the boys were actually getting along with each other.  I couldn't figure out what I had to feel so down in the dumps about.  And it didn't feel like depression.  I have clinical depression, so I am very familiar with what that feels like.  No, I just didn't feel like myself.  And then, it hit me.  It had probably been a month or more since I had done anything for me.  I looked at my hair and realized that it had gotten really shaggy, and I had not seen Lady Clairol in a very long time.  I was really starting to look like my mother!  She is a beautiful lady, but she's 71, and I'm not!

Right then, I picked up the phone and called my hair salon, and they could see me right then.  I got my hair cut and styled, and then I went straight to Walgreen's and bought my hair color.  I used it as soon as I got home and restyled my hair.  Once the hair was taken care of, I pulled out my makeup tackle box, blew off the dust, and set about putting on my face.  When I was finished, I looked in the mirror, and for the first time in a long time, I felt good about myself!  Now, I put on makeup a few times a week, just for me.

When you deal with a chronic illness, it gets very easy to let things like this fall by the wayside.  Just getting through the next week, day, hour, minute seems like all we can do.  We have the stress of our illness, the pressure of caring for our family the best we can, and the demands of children.  The easiest thing to let go of is the little things we do for ourselves.  And that is the worst thing we can do!  Believe me, our family knows when we are feeling down, and they don't always know what to do.  So, take some time out and just do something for you.  It doesn't have to be putting on makeup; some of us just aren't "girly girls".  But think of something that you used to do just for fun, and do it again!  You will be amazed at the difference it will make in your mental health!

Wednesday, April 11, 2012

But We're Only Joking!

Currently, there is a group on Facebook whose sole mission is to bash the handicapped.  The premise of the group is that the handicapped should not be given parking permits.  And, they claim they are "only joking".  Well, most bullies will say that they were only joking when they are pointed out for being bullies.  These fine people are telling their members to steal handicapped parking permits out of cars, steal handicapped parking signs, and to flip off the handicapped.

If they were making racial or homophobic slurs, more people would be up in arms, as they should be.  But these people have decided to go after a segment of the population that is probably less able to defend themselves against this type of behavior.  I took a religion class in college, and one of the things our professor said has stayed with me until this day.  He said that many people in Germany thought that the Holocaust was horrible, but they didn't speak out against it.  These people, according to my professor, were just as guilty as the perpetrators of the atrocity.  Now, I am not saying that this rises up to that level in any form or fashion, but if we don't speak out against it now, who knows how far it might go!

My husband is in a wheelchair and I am unable to walk long distances.  We have a handicapped parking permit.  Without it, it would be impossible for us to do many of the things we are able to do.  If these people had their way about it, we would be unable to go anywhere!  They feel that by making things easier for the disabled, they are losing their "right" to park closer to a building.  Well, I would give anything not to need my handicapped parking permit!  One person even brags about using her grandmother's permit after her death in order to park closer to her classes!  Unbelievable!

I am not an instigator.  My motto tends to be live and let live.  I also think if you give an idiot enough rope, they will eventually hang themselves.  But I cannot stay silent about this.  If people do not speak out about this right now, while it is still a "joke", pretty soon the idea will spread.  People will start to think it isn't a joke and begin to act out against people with disabilities.  Some of you may think I'm exaggerating the scope of the problem, but I truly don't think so.

Who remembers Matthew Shepherd?  This was a young gay man who was murdered simply because he was gay.  The perpetrators claimed that it was a joke gone horribly wrong.  I would hate to see someone with a disability become the butt of this kind of joke simply because no one was willing to speak up about this sort of behavior.  I hope that you will join me in raising our voices against hatred of any kind.  It's time to let all of the bullies in this country know that we are tired of it, and we aren't going to sit by, silent, until the joke becomes a tragedy.

Tuesday, April 10, 2012

Sushmita

I spend a great deal of time on Facebook.  Initially, I started using it as a way to get back in touch with old friends, and I found a great number of those.  It has been so nice to talk to people that I knew as a young person and see how their lives have changed over the years.  Over time, however, I learned that people with like thoughts and experiences joined together in groups on Facebook to discuss mutual interests and to provide support to one another.  It was this discovery which has really enriched my life.

I belong to a couple of different support groups and have made friends that I cannot live without, even though I have never met them face to face.  One of the groups that I hold dear is for people suffering with chronic pain.    I have made friends from all over the world, and I have learned that I'm not alone in dealing with the issues that I face on a daily basis.  Most of the people that I have gotten to know are around my age, give or take a few years.  We find that despite the fact that we may be from different countries and cultures, we have so much in common, regardless of our initial shared suffering.

There is one person that I have become friends with who is only 18 years old.  Her name is Sushmita and she is from India.  I was first drawn to Sush because of her age.  My children are around the same age, and I felt an immediate motherly impulse towards her.  It was hard for me to imagine one of my boys living with the chronic pain of my condition, and I have to admit, this led me to feel sorry for this sweet girl.  Sush has suffered with chronic pain for most of her life.  But the more we talked, I stopped feeling sorry for her and started to admire her.

It would be so easy for this young woman to sit around and feel sorry for herself, but you never get that impression from talking to her.  Of course, like all of us who deal with chronic pain, Sush is frustrated with her condition and would give just about anything to be cured.  We all feel that way!  But every time I talk with her, I see her strength.  I have gotten to know a young lady who constantly strives to live her life as normally as possible.  I have gotten to know a girl who has a positive attitude despite the suffering that she endures.  It would be so easy for her to decide that her situation is hopeless, but not Sushmita!  She inspires me to try and be the best that I can be, and not to let this condition beat me.

When Sush and I first started talking with one another, I thought that I was going to be someone to inspire and encourage her!  And, I do try and encourage her, but I really don't think she needs it.  Her upbeat personality and zest for life inspire me, and I feel blessed to have found her.  I pray that someday, my young friend will find something to deliver her from the pain that she deals with day in and day out.  I don't know if I would have had her strength of spirit at her age.  I have often told her that I think of her as a daughter, and that is true.  But, I also think of her as a friend and an inspiration.  I just wish more people could know Sushmita.  I think if they did, they would see proof that our disabilities don't have to limit us.  And they would be blessed for knowing this very special young woman.

Everybody Hurts

I've always liked the song "Everybody Hurts".  It reminds me that we are all more alike than we may think we are at first glance.  We have all experienced some kind of pain during our lives.  Pain isn't always physical; sometimes emotional pain can be far worse.  At some point in all of our lives, we have experienced the pain of that first breakup.  We swore that we would never love anyone again, and yet, somehow we were able to get past that heartache and move on to a better, lasting love.  We have experienced the pain of losing someone we loved to death.  We didn't think we would ever get over the loss, but we have been able to keep going, and one day, you realize that you are laughing again.  And, we have all experienced physical pain, some more than others, but pain is pain.

It's easy to lose sight of the pain other people experience when we are going through our own pain.  Not too long ago, my oldest son broke up with his girlfriend.  He was so head over heels in love with this girl that the pain he felt was almost physical.  He spent days crying over the loss, and even swore several times that he was going to kill himself.  For the first few days, I was able to hold him while he cried and commiserate with him.  But, after a few days, I was over it, even though he clearly wasn't.  I actually told him to get over it at one point!  How cruel of me!  I can remember when my first love broke my heart, and I swore I would die from the pain.  I must have cried for weeks, before I finally got tired of crying.  I didn't show my son the compassion that I should have.  I knew the pain he was feeling, because I have felt that pain myself.

Before I developed my back problems, I worked for a company that provided managed care for medicaid recipients in the state of Kentucky.  My job was to take calls from people on medicaid who were having problems with their coverage or with doctors or pharmacies, and try to solve those problems.  I dealt with a lot of people who suffered from chronic pain.  And while I was always kind and helpful over the phone, I wasn't always so kind once the call ended.  Like many people who have never experienced chronic pain, I got stuck in thinking that these people must be drug addicts.  I often thought that only a drug addict could possibly be that upset over having to wait a couple of days until they could refill pain medication!  I also thought that most of them should just get over it.  I couldn't conceive of pain that never ends because I had never experienced it myself.  Well, I get it now.  I wish that I could call many of those people back and apologize for the negative thoughts that I had at the time.  Like the song says, everybody hurts.

Lastly, I want to tell you about my oldest, dearest friend.  Last year, Susan had a year that I don't think I would have survived.  Susan and I have been best friends since college.  She understands chronic pain as she has RA, and has since we were in college together.  She is the first person I ever knew with a chronic illness, and she always handled it with grace and courage.  Susan is someone I have always looked up to, and loved with all my heart.

Susan comes from a large family.  She is the next to youngest out of  seven children.  They are a wonderful, close knit family and I loved them like I loved my own.  Last March, Susan's parents were driving home when her father apparently had a stroke.  He lost control of the car, slamming into a tree, killing both of them instantly.  And even with the amount of pain she was in, Susan was comfort to her brother and sister's and to those who dearly loved her family.

As if that wasn't enough to deal with, Susan lost her 15 year old daughter in August of that same year.  Lindsey was her only child, and the two of them were closer than most mother's and daughter's.  Lindsey had health problems, but nothing that would have made losing her seem like a possibility.  Susan called me to tell me what had happened, and I sobbed the whole time she was telling me.  We cried together, and then the strangest thing happened.  I soon realized that Susan was comforting me, not the other way around!

I can't even imagine the amount of pain that she has gone through in the last year.  The thought of losing my mother and any of my precious children fills me with fear.  But I absolutely cannot imagine losing both in a span of five months!  The pain would be crushing.  But Susan has been able to find joy out of tragedy.  Her faith is of the moving mountains sort, and she is truly comforted by the thought that her parents were there to meet her daughter and to take care of her.  Susan still hurts horribly, don't get me wrong, but she is able to find a peace that I don't know if I would have within me.

Yes, everybody hurts.  We need to remember that no matter how bad our pain may be, someone else's may be worse.  We need to try and be open to what other people are going through so that we can reach out and comfort them because we do understand what they are going through.  We need to remember that we can't look at someone else and think that they can't possibly be "carrying on" so much, because their pain cannot compare to ours.  I have been guilty of this on several occasions.  We need to be empathetic to those around us because we do know what it's like.  We have to remember that everybody hurts, and treat one another with love.

Sunday, April 8, 2012

Happy Easter!

Happy Easter, my friends!  You know, there is just something about the Easter season that brings me joy know matter where I may be in my life.  Spring is a time of rebirth, and it always gives me a sense that I can start over to a certain extent.  Looking out my window, I can see nature in all her splendor.  There are two young dogwood trees in my front yard, and I have loved watching them go from looking like large twigs, to being covered in lovely white flowers, to looking like real trees again.  It is just so lovely.

The world almost seems brand new again at this time of the year.  The trees have budded and the new leaves are starting to come out.  Everything seems fresh and new and full of hope.  And while Spring is terrible for my allergies, it is still one of my favorite times of year.  Spring means that the temperatures are starting to get warmer, and that almost always means less pain for me.  I love going out on my deck in the mornings with a cup of coffee, and having that solitude that I crave.  I'm not stuck inside anymore!  And the warmth of the sun always feels so good on my joints.  It's easier for me to be happier about those small pleasures again.

I do feel a little bit of melancholy at Easter time, however.  Why?  Because I miss the days when my boys were little and they would get so excited to wake up and see what the Easter Bunny had brought them!  Just like with Christmas, they would be up at the crack of dawn, running into the living room to see what treasures they would find in their baskets.  After church, Dale would take all of the eggs outside and hide them for the boys to find, while I cooked Easter dinner.  Those days are over for now.  The boys will sleep half the day, come out of their rooms long enough to grab the chocolate and retreat again til it's time to eat.  But I know that they are all growing up to be fine young men, and one of these days, we will get to experience that excitement again when they have children of their own.

I've never been one to make New Year's resolutions.  I just don't feel like starting something new in the dead of winter.  Spring seems more like the time to begin something different or try something new.  I would love to say that I'm going to start going to the gym or walking around the block, but with my bad knees and back and everything else that's falling apart, we all know that isn't going to happen!  But I do have some things that I want to do better on for the rest of the year.

First of all, I want to do a better job of keeping up with my housework!  I've spent the last couple of days doing some spring cleaning, and it feels so good to have a clean house!  I think if I just do a few things a day, I can stay on top of it and not have to kill myself when I decide that I've had enough.  I also want to try and spend more time with my boys individually.  They are all growing up so fast, and it isn't going to be long until they are grown and gone.  I want to make sure they each know how precious they are to me.  Lastly, I want to learn to be more compassionate.  I want to do a better job of letting the people around me know that they matter and I take them seriously.  I can only speak for myself, but there are times when I get so caught up in my pain, that I fail to see the pain in people around me.

Take a little time during this season of rebirth to see what you can change in your life.  It doesn't have to be monumental, and you don't have to share it with anyone else.  Just decide in your heart that you are going to do one of two things to become the person that you wish to be.  I hope each and everyone of you has a happy Easter, and that you are able to look beyond your pain and see the beauty that the world has to offer.

Saturday, April 7, 2012

Pat Yourself on the Back!

People who live with chronic pain often have to look really hard to find things to be proud of.  And sometimes, the things that we do which make us feel proud really seem odd to other people.  We might feel a sense of pride for being able to make a sandwich without asking for any one's help.  Or, we may be thrilled that we actually got up and put makeup on that day.  To those of you who do not suffer from a chronic illness, these things probably sound down right ridiculous.  But my fellow chronic pain sufferers will completely understand this.

I did something yesterday that I am incredibly proud of.  I cleaned my laundry room!  Now, I can hear some of you saying "Huh?" and scratching your heads.  I even know what you're thinking!  Many of you are thinking, "that's nothing to get excited over" or "that's something you should do each time you clean" or "I can't think of anything less impressive".  But for someone who suffers from chronic pain, this was a lot like climbing Mt. Everest.

Cleaning  my house is one of the most painful things that I have to do.  And, that is why my house is a mess most of the time.  Standing for any length of time can bring me to tears.  All of the bending and lifting that comes with house cleaning can put me in bed for a couple of days.  I'm not talking about heavy duty spring housecleaning.  I'm talking about the everyday straightening, dusting, and vacuuming that most people take for granted and do all the time without even thinking about.  However, for someone suffering from chronic pain, these everyday tasks can sometimes seem insurmountable.

My laundry room had just gotten downright disgusting.  Not only is this where my washer and dryer are, but it's also where all of the cats' stuff is.  I keep their food and water in there, along with the litter boxes.  I had gotten to the point that I would just close my eyes every time I went in there.  The floor had become carpeted with lint, cat litter, and little bits of cat food.  I'm not proud of this, but I'm just trying to be honest.  I also store a lot of stuff on the shelves in this room, and that stuff had begun to take over.  It really was bad!

As the day went on, I realized that I wasn't hurting nearly as much as I usually do.  I began to realize that my last epidural injection was actually doing its job, and the pain from my fibro was almost nonexistent.  This almost never happens.  I had a few errands to run, and when I got home, I realized that I still felt good, and I knew exactly what I had to do.....Tackle the dreaded laundry room!  I was a little shocked that I was thinking this way, but I jumped up and started working before the thought passed!

Because I can't lift anything, I had my two youngest sons carry everything out of the laundry room.  Once that had been done, I got started.  First, I swept the floor, and there was enough cat hair in there to actually make another cat!  Between that, the litter and food on the floor, and the lint from the dryer, I had a large pile of sweepings.  I know it's a bit gross, but this is the way it was.  I got this picked up and thrown away, and made a sink full of hot water and bleach to mop with.  I also spot treated a few areas on the floor that I knew were going to need extra help.  I wiped down the washer and dryer, and then I mopped that floor til it shined!  Once the floor was dry, I had my boys move everything back in, and then I just stood there admiring all of my hard work.

Like I said before, this may not seem like much of an accomplishment to those who don't deal with chronic pain.  But for me, it was wonderful!  The things that we consider BIG DEALS often seem like silly little things to those around us.  However, we need to be proud of the things that we do no matter how insignificant those things may seem to others.  If taking a shower is a huge accomplishment for you, pat yourself on the back!  Your family may not totally understand why you are so excited, but you know, and that's all that matters!

Friday, April 6, 2012

Take Yourself Back

I will be 50 years old in September, which seems so hard to believe!  And it has taken me nearly that long to learn a lesson that I think everyone can benefit from.  Here it is:  We teach other people how to treat us.  For example, if you feel that you are a worthwhile person, people are going to treat you like you are worthwhile.  The converse is also true.  If you believe that you are a doormat, then people are going to treat you like a doormat.  Well, I have made the decision to take myself back!

I have spent most of my life believing that I deserved to be treated like a doormat, and I am just now figuring that out.  My self-esteem has been so low that I truly believed that I deserved the negative things that happened to me.  If someone made fun of me, and hurt my feelings, I believed that it must somehow be my fault that someone would say something mean to me.  And, even though I knew in my heart that what they said about me wasn't true, I convinced myself that everyone else would believe it and there was nothing I could do to change their perception of me.

My first husband was abusive and I was convinced that I deserved it, that it was somehow my fault.  Because I didn't leave the first time that it happened, I told him loud and clear that he had my permission to do whatever he wanted.  The first time he laid hands on me, we were in college and still dating.  I don't even remember what it was that set him off, but the end result was me lying in a parking lot, bruised and bleeding.  One of his friends found me there, got me back to my dorm, and begged me to leave him.  But because my self esteem was so low, my response to this beating was to marry him!  With this action, I gave this man permission to treat me like a piece of dirt on his shoe.  Luckily, after 4 years of dating and three years of marriage, I finally found the courage to leave him.

Now, this is a very dramatic example of something that many of us live with everyday of our lives.  Have you ever had someone say something really mean to you, but then immediately afterwards they tell you it was just a joke?  I have had that happen to me many times.  I would smile or laugh on the outside, but on the inside, I was devastated by the comment.  I gave my so-called friend permission to make fun of me, laugh at me, and then I reinforced that bad behavior by laughing right along with them.  I was so desperate to have a friend, any friend, that I gave them permission to treat me like a laughing stock.

Finally, I have learned that I am a valuable person, and that I deserve to be treated with respect!  Each and everyone of us deserves to be treated well, and we don't have to take being treated so badly.  I used to think that I didn't have a choice about how people treated me, and that is just wrong.  I have learned over the years that I am someone who deserves to be treated with dignity.  I have taken back permission for others to use me as an emotional punching bag.  It isn't easy, believe me.  People don't like to change, and some people refuse to.  Those people are no longer a part of my life.  I can't change what has happened to me in the past.  But I can change what happens to me from this point on.  And it has only taken me 50 years to learn this lesson!  I hope you learn in sooner.
 

Thursday, April 5, 2012

A Blue Funk

I woke up this morning in a blue funk.  It started before I woke up, actually.  I didn't sleep well last night for starters.  I tossed and turned all night long, searching for a comfortable position which I couldn't seem to find.  Even before I opened my eyes, I could feel the pain starting around the edges and working its way into my consciousness.  Pain was what finally pushed me all the way to wakefulness.  But, pain isn't the only thing bringing on this blue funk.  For the last couple of days, I just haven't felt well.  I'm not running a fever, and I can't put my finger on any one thing that's wrong.  I just don't feel well.

I get this way every once in a while, even though I try so hard to avoid it.  For me, a blue funk is a little bit not feeling well, a little bit depression, and a little bit of poor, pitiful me.  The weather today is cold and damp, which never bodes well for my pain levels.  I can feel the cold seeping into every joint in my body.  I have rods in my back from my spinal fusion, and they seem to absorb the cold.  Have you ever had a bit of metal, like tin foil, touch a filling in one of your teeth?  That's what my back feels like right now.  It's a sharp, jolting pain that comes and goes.  And this is on top of my usual back pain.  I just get so sick and tired of this, day in and day out.

My knees are bothering me more than my back at the moment.  Both of them are terribly painful, and the motion of standing up and sitting back down is unbelievably painful.  If I stand for too long, one of them will buckle on me, and I can feel the bones grinding against one another.  With both of them being in this shape, I never know which one is going to go out on me.  I am always afraid of falling because I don't know if I'm going to be able to catch myself.  I don't even have to be walking for them to go out on me - I can just be standing there, and whichever one I'm putting the most pressure on will suddenly buckle.  My family has gotten use to me screaming all of a sudden because of this.

I'm not proud of it, but I am really feeling sorry for myself today.  Normally, I'm pretty logical about these sorts of things.  I understand that my physical body is a piece of crap, and it's falling apart bit by bit!  And yes, you can laugh because this is a bit of dark humor at my own expense!  Seriously, though, I am so tired of being in pain all the time.  It just isn't fair.  I hate feeling this way all the time, and some days, it is just too much to deal with.  I deserve one day with no pain!  I'm not even asking for it to go away forever, I just want one damn day that I feel good!  Right now, I wish I was two or three years old, and I could lie on the floor and kick and scream and just throw a good old fashioned temper tantrum!

Earlier today, a friend of mine in a support group I belong to online, said basically that my body and spirit would get over this when the time was right.  Perhaps this is my body's way of dealing with the sadness we all experience when dealing with this condition.  I can only speak for myself, but I tend to push my negative feelings down.  I try to put on a happy face as much as possible, because I really don't want people to sit around feeling sorry for me.  But, you can only push your emotions down for so long.  The more things you pile on that well of negative thoughts, the more pressure you build up.  Eventually, all of the pressure has to be released, and I think that mine has released itself into this blue funk that I'm feeling right now.

I know that this is going to go away eventually.  I know that in a day or two, my old self is going to reassert itself and I am going to be in a good mood again.  I know that while my pain is never going to go away completely, I am going to have good days with pain levels that I can deal with.  And, I know that spring is rising up like a daffodil, and the cold, rainy weather we have right now is going to go away.  But for today, and maybe tomorrow, I'm going to just let this blue funk sit here with me.  I'm going to give myself permission to feel sorry for myself for a day or two, and I'm going to fall in love with my heating pad again.  So, my old blue funk friend, let's have another cup of coffee and climb back in the bed, and watch trashy TV together.  I know you won't be here for long!

Wednesday, April 4, 2012

One Step Forward and Two Steps Back

Dealing with chronic pain is like taking one step forward and two steps back.  And this happens with alarming regularity.  Some days, it just seems like there is absolutely nothing we can do to get ahead of this condition, and this is one of the things that leads to the crushing depression that many of us deal with.  I'm sort of at that point right now.

The other day, I wrote about having a great day.  I was feeling well, and even though I didn't do anything exciting, I did more than my body could handle.  I can't tell you the number of times this happens to me, and to so many others dealing with chronic pain.  For people who do not deal with this condition, you simply do the things that you need and want to do, and you don't think about it afterwards.  I remember those days, but they are nonexistent now.

Going to the grocery store is a major ordeal for me.  First of all, I have to start planning about a week in advance.  I pick the day that I am planning on going, and I start resting up in order to have the energy to get through the trip itself.  I let my family know that this is the day that I'm planning on going, and I make sure that at least one of my children is going to be home to go with me.  I try to go at a time during the day when there aren't going to be too many people there.  There are a couple of reasons that the time of day is so important.  I cannot make it through the store walking anymore, so I try to make sure it isn't a peak time of day to make sure that I can get one of the scooters that many stores now provide for people who are older or disabled.  I also have trouble maneuvering through the store when there are a lot of people there.

Taking one of my sons with me is essential.  I need someone with me who can actually push a cart since the basket on the scooter isn't big enough for everything we need.  It's also very difficult for me to reach things higher up on the shelves.  By the time we get through the store, I am exhausted, even with riding on the scooter.  Getting through the checkout line leaves me sweating and shaking.  I have to have one of my sons put all of the bags into the car for me because it is all that I can do to get back into the car and drive home.

Once we get home, the only thing that I can do is go inside and get into my recliner and put my feet up.  My sons and husband have to put everything up.  On a grocery shopping day, we either order out or we have something for dinner that doesn't require cooking because I simply can't handle it.  My pain levels are through the roof when I get home.  My back will go into horribly painful spasms for hours after this much activity, and it often takes two to three days for me to start to get back to normal.   This doesn't happen every once in a while.  It happens every single time I have to go grocery shopping.

This is only one example of something I deal with all the time.  It isn't just grocery shopping that does this to me.  It also involves going out to eat, visiting friends, attending school functions for my children.  These are things that most people just take for granted.  You don't have to plan for days in advance to do something that seems so simple.  And every time we take that one step forward to do something we either need to do or want to do, it takes us two steps back to get over whatever it is that we did.

Tuesday, April 3, 2012

Friends

Friends can be such an important part of our lives.  They are there to share the laughter and the tears with us.  Many people who live with a chronic illness quickly learn who their true friends are, because many people walk away from us.  It's hard to support a person with a chronic condition, because you never know if they are going to be there for you or not.  I don't fault the people who have walked away from me, but I cherish the people who are still there.

I have two friends that I know will be there for me know matter what, and I will be there for them anytime they need me.  We all have a lot of acquaintances in our lives, and we know that we can call them up to chat or maybe go out to lunch.  But true friends are much more rare.  True friends are those people who know your deepest, darkest secrets, and you know that they will never tell anyone.  True friends are the people who sit and hold your hand during your darkest days.  True friends are the people who will cry with you over your deepest sorrows, and laugh with you at the funny things that happen in all of our lives.  True friends are very rare, and when you find one, you should treat them like a priceless jewel.

I am blessed to have two such friends in my life, and I don't know what I would do without them.  My first friend and I met each other in college.  Almost from the minute we me each other, we were best friends.  I was able to talk to her about anything and everything, and I new that I could trust her with my life.  We had a standing date every week night at 11:00 pm, when we would get together to watch Star Trek (nerdy, I know!).  We also were both singers and always supported each other when we performed.  She was a bride's maid when I married for the first time, and I love her like a sister.

Sharon was a couple of years ahead of me in school.  During her senior year, she started having horrible pain.  It got to the point that she had to temporarily leave school because she could no longer function.  We soon found out that she had rheumatoid arthritis.  Even though she wasn't at school, I made a point to talk to her a couple of times a week, and let her know that I was still there.  After several months, Sharon was able to return to school, but she was very limited in the physical activities that  she could do.  There were times when she couldn't make the walk to class, and I would make sure that she got my notes, if it was a class we had together, or I would track someone down from her class, and get a copy of their notes for her.

As time went on, I became the one in need.  I went through a nasty divorce, and Sharon would always seem to call me at the right times.  It was like she knew that I needed her.  Or, I would go to her house for a weekend visit, and she would take care of me.  I don't think I could have gotten through this time in my life without her loving care and attention.

Over the years, we lost touch with one another, and there was always a little piece missing from my heart.  When good things happened in my life, I wished that she was there to share them with me, and when bad things happened, I wished that she was there to cry with me.  I missed her so much, that I decided to track her down.  I found her eventually, once my son's taught me how to use Facebook!  I sent her a long letter and told her everything that had happened in my life up to that point and I sent her my phone number.  And finally, it happened!  My phone rang and it was Sharon!  As soon as we started talking, it was like we had just hung the phone up a few hours before, and we were just continuing that last conversation.  We have both been through a lot of things in our lives since that phone call.  And even though we live hundreds of miles apart, we will never lose one another again.

The other friend that I can't live without is a new friend.  I met Brenda (not her real name) through a Facebook support group for people with fibro.  We learned that we only lived about 30 miles away from each other and decided to get together for lunch.  Well, it was like finding a long lost friend.  Despite the fact that she is much younger than I am, it just didn't seem to matter!  We had so much in common, and we understood what the other was going through because of our shared condition.

Not long after we met, I had to have a medical procedure performed in Louisville.  I couldn't drive, and I couldn't find anyone to take me.  Brenda and I were talking on the phone and I told her that I didn't know what I was going to do.  She told me not to worry about it, because she would make sure that I got there, and got home.  This wonderful woman drove 30 miles to my house to pick me up by 6:00 am, drove 30 miles back to Louisville, and stayed with me throughout the procedure.  Then she drove me back home, made sure I got into the house and had everything I needed.  And she then had to make the drive once again to get home.  I couldn't believe that someone went to that much trouble for me!

There have been several times when I was having a rough day, and Brenda would show up on my doorstep out of the blue!  It was like she knew when I needed a friend without my telling her.  One day, she came over and we went out to a local restaurant for margarita's.  Another time, she knew that I had been in a bad flare up of my fibro and wasn't sleeping.  Brenda came over to see me.  She made me lay down and take a nap, and she cleaned my kitchen for me.  I am just so blessed to have this wonderful woman in my life.  She has quickly become someone I look up, despite the fact that she is so much younger than me.

Brenda also has fibro and chronic pain.  Not long after we met, she decided that she was going to get more active.  Her boyfriend, whom I'm also crazy about, is a long distance runner, and Brenda wanted to start running with him.  Slowly, Donny (not his real name!) started working with her to train her body to handle the increased exercise.  It was hard for her, but Brenda is now running with a vengeance!  She has competed in half marathons and 10 mile races.  And she runs in honor of those of us with fibro and chronic pain conditions.  Brenda is one of those rare people that I consider to be an Earth Angel.

When it comes to friends, quality is far more important than quantity.  There have been times in my life when I thought that I had very dear friends.  But when things got difficult in my life, they were nowhere to be found.  I have had times when I have shared very personal things with people I thought were my friends, only to find out that they were telling everyone we knew.  I am blessed to have met Sharon and Brenda.  I know that these two women love me as much as I love them, and they will always be an important, vital part of my life.

A Great Day

I have to admit that today has been a great day!  When you live with chronic pain, great days can be few and far between, and when you have a great day, you need to look upon it as a gift.  It is so easy to be completely dragged down by the things we go through on a daily basis.  Some days it seems that the only thing I do is try to find that one position which will give me a little relief for a while.  Some days I can't quit worrying that I'm letting my husband and sons down because I can't do the things I used to do.  Some days I wonder how I'm going to get up and walk to the bathroom, because just shifting my position in the bed is excruciating.

But none of those things happened today, and I am so very grateful.  Now, you are probably wondering what I did today to make it such a wonderful day.  I didn't win the Mega Millions Lottery.  I didn't win an all expense paid trip somewhere on Live with Kelly.  I didn't learn that George Clooney has decided to leave Stacey Keibler for me.  The thing that made this a great day is the fact that I only did what I wanted to do today.  This doesn't happen very often, and I really needed a me day, and I highly recommend them to everyone!

First of all, I woke up around 3:00 am this morning, and I thought that was a sign that the day was just going to be awful.  I took same pain medicine and was able to go back to sleep around 4 am.  I didn't wake up again until 9:30!  I can't tell you the last time I slept that late, and it really felt good.  Upon waking, I lay very still for a minute or two, and then started moving slowly to see what was going to hurt the worst this morning.  And I realized that things hurt, but they didn't hurt nearly as bad as they usually do.  I took my medicine, used the bathroom, and went in to turn on my coffee.

Soon, I had my first cup of coffee in hand and headed for the computer.  I sat down and lit my first cigarette of the day (I know, I know!  I need to quit; it's bad for me; it's a stupid thing to do!) and then I realized something:: my house was completely silent!  I was the only one awake, and I knew that I was going to get my quiet time that I have to have every single day.  I was in heaven!  I spent most of the morning chatting with friends on Facebook, and playing some games on my computer.  No one was standing behind me, telling me that they had to get online at just that moment.  No one was telling me that they had to go here, there, and everywhere.  No one was asking me to do something for them!  I didn't know how I got so lucky!

Now, I knew that I had some errands to run this afternoon, but my day was going really well, and quite honestly, I didn't want to leave the house.  I was comfortable in a ratty pair of shorts and a T-shirt.  I finally got off of the computer and went in and took a hot bath, washed my hair, and shaved my legs.  Once I was finished, I came into the living room, got into my recliner, and propped my legs up for a little bit.  Dale was washing dishes, and I told him that I just really didn't want to get out and do anything today.  Normally, Dale gets panicky about getting things done on schedule, or earlier than scheduled if possible.  This time, however, he said that we really had until tomorrow to get these things taken care of, so I could just stay home!  I couldn't believe my ears!

My two youngest boys are on spring break and they are at friends homes, so I didn't have to worry about them.  Chris had to be at work at 4:00 pm and normally, I take him and pick him up.  But today, I let him take the car so I still had no reason to leave the house.  Dale and I have been the only two home all evening, and we would have been just fine with a sandwich and some chips for dinner.  I decided, however, that I wanted to cook something, so we had smothered chicken breasts, green beans, and mashed potatoes for dinner.  Dale even told me not to worry about cleaning up - he said he would take care of it!

Many of you are probably sitting back, scratching your heads and thinking, "That doesn't sound like a great day.  It sounds like a really boring day!"  And you are right!  Before I started living with chronic pain, a day like this would have made me crazy.  I was always happy to be on the move all the time.  A great day for the old me would probably have had something to do with going somewhere and spending money, followed up by going out to a club.  Now, those sorts of things are distant memories.  This was a great day because I was actually able to do some things just for me, and I was able to do it with very tolerable levels of pain.  Those days are few and far between, and we have to enjoy them to their fullest, because we never know when they are going to come back again.

Monday, April 2, 2012

The Deep, Dark Hole

Almost everyone who deals with chronic pain, also deals with depression.  It goes with the territory and it is nothing to be ashamed of.  Think about it:  first of all, your body hurts all the time and nothing you do makes the pain go away.  Then, you have to deal with people in your life thinking that you are a hypochondriac, lazy, a drug addict, and the list goes on.  You also have to learn to live with the fact that you aren't the person you used to be.  It's enough to cause you to want to crawl into that deep, dark hole, and never crawl out again!  I have lived on the edge of that hole for many, many years.  I suffer from chronic depression.  For me, it started when I was 15 years old.

I have been described as shy most of my life.  And while we didn't have the terminology back then, I would have been diagnosed with social anxiety disorder.  Every day was a battle to just get through it.  The teenage years are hard enough to get through when you don't have other issues, but for me it was an unending nightmare.

During junior high, I was somehow able to keep the depression at bay.  My saving grace was choir.  I have sung all my life, and I'm actually really good at it.  In fact, I was pretty much the star in our school choir.  It sounds crazy, but I might not be able to carry on a conversation with someone due to the social anxiety, but put me on a stage and ask me to sing, and I came to life.  Everyone knew who I was because of my singing.  I had something that set me apart from everyone else and made me special.  For a girl with such low self esteem, just having something that set me apart made me life bearable.  But all that changed when I moved on the high school.

High school is a big adjustment for everyone.  You go from being the top dog in your junior high or middle school, to being the mistreated puppy.  For me, everything just got multiplied.  I got caught in a turf war between two choir directors.  Laugh if you must, because it does sound funny!  The junior high choir director and the senior high choir director were brothers, and they did not get along with one another.  I had been little brother's star pupil and everyone knew it.  Big brother wasn't going to do anything to make little brother happy, so I became collateral damage.  I went from being the star to being the lowest form of life.

I identified so much with being a singer, and being the best, that when it was taken away from me, I felt like I had nothing.  Who I had assumed myself to be was gone.  Singing was what had always set me apart, and now I was being told almost daily that I wasn't good enough.  This sent me into a downward spiral and I ended up in the very bottom of that deep, dark hole of depression.

Around Thanksgiving that year, I simple couldn't take it anymore.  At first, it started out as just needing a break, and so I faked being sick.  I had done some acting too, and I was good at it.  Everyone really believed that I was sick.  I was even able to convince my family doctor that I was extremely ill!  I was able to pull this off for about two weeks.  I felt like being at home was saving my life.  Even though I didn't know what it was at the time, I had been having panic attacks regarding school.  Anyone who has had a panic attack knows how scary they are, and for a child of 15, it was terrifying!  Once I stopped going to school, the panic attacks stopped, and I knew that I couldn't go back there.....ever!

I had managed to keep myself out of school by playing sick until Christmas vacation, but I knew that I was going to have to go back as soon as the holiday was over.  The thought of going back to that awful place was so daunting, and I just knew that I would die if I stepped foot in that building.  On the first morning of school, I had the worst panic attack I had ever experienced.  It was so bad, that my mother took me to the doctor and they actually sedated me.  The longer I stayed out of school the worse it got.  Eventually, this turned into agoraphobia.  The definition of agoraphobia is an abnormal fear of crowds, public places, or open areas, sometimes accompanied by anxiety attacks.

Many people who develop agoraphobia are so terrified at the thought of these things that they become shut ins or recluses, and this is what happened to me.  The thought of leaving even my bedroom was so frightening that I would develop panic attacks just walking out the front door.  If we decided to drive across town to visit my grandparents, I could only get in the car if it was in the garage, and then I had to ride with my eyes closed, or lying down in the back seat so that I didn't see anything.  I was also becoming suicidal at this point.  I was in so much emotional pain, that I just wanted it to stop, and suicide seemed like the only solution to me.

Thank God for my mother!  She could see what was going on with me, and soon took me to a therapist.  I was furious at being forced to go to a shrink.  My thought processes were so irrational at the time, that I didn't think there was anything wrong with me.  I didn't need a psychologist!  They were doctor's for crazy people!  For the first few visits, I sat in the chair with my arms folded across my chest refusing to say anything.  But no matter how much I begged not to be sent back, my mom kept taking me.  Once they got me on some antidepressants, I slowly began to open up.

One of the things that everyone knew, including me, was that I was too smart not to go back to school.  And no matter how much better I was getting, my terror of returning to that high school remained.  I tried several times to return to school.  I would get up and get ready to go, but the closer the time came to leave, the higher my anxiety got and I would be right back in the middle of a panic attack.  It seemed hopeless to me, and some of the suicidal thoughts started to come back.  My therapist asked me one day what it would take to get me back into school.  I thought about it and I told her that I would have to go to a school where no one knew me.  Part of the reason that I was so scared about returning to school was facing my peers and being asked over and over where I had been for all these months.  I did not want to have to admit to the truth.

We finally came to a solution for getting me back into school.  I was going to boarding school!  And even though the thought of living hundreds of miles from home and being away from my family for the first time was scary, it wasn't nearly as frightening as driving across town to go to school.  I knew that once I got away from that school and the people who knew me, I could become someone else.  I wouldn't be pigeonholed as that shy girl who sings.

We went down for an initial visit, which included academic and psychological testing, and I was accepted as a  student.  It was decided that I would start during their summer session and then return for the new school year in the fall.  This was the first time that I had been truly happy in such a very long time.  I was thankful for the chance to start over.  Now, going to the school did not miraculously cure me.  There were times when I still had occasional panic attacks.  And, although I'm not proud of it, there were times when I would call me mother and threaten to kill myself if she didn't come and get me right that minute.

But with a lot of hard work, I did more than survive, I thrived at this school!  I actually made friends, I excelled in my class work, and I was once again known as a singer!  In fact, I made up my sophomore year of school and was able to graduate on time.  I went on to college, and continued to make my way through life.  But, I have continued to deal with depression all of my life.  I have even gone through such deep depression over the years that I have been suicidal again.  Depression is something that I will live with the rest of my life.

The thing I want you to take from this is that there is hope!  There is a way out of the deep, dark hole that we often feel ourselves falling into. Depression is a physical illness, the same as high blood pressure or diabetes.  It is nothing to be ashamed of.  If you are feeling like you are falling into the hole of depression, fight for yourself!  You are important, and you deserve to live a life full of joy. Crawling out isn't easy.  It takes hard work, and it is very painful at times.  Oh, but it is so worth it!