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Thursday, March 5, 2015

Dealing With People Who Just Don't Get It

Each and everyone of us who deal with chronic pain has had to deal with people who just don't get it. Each and everyone of us has been told that if we just got out and walked a couple of miles, all of our pain issues would vanish.  Each and everyone of us has been told by a well meaning friend that his/her aunt, mother, sister, father, brother had chronic pain cured by taking some vitamin or seeing some sort of new age healer.  And, each and everyone of us has wanted to punch those well meaning friends right in the kisser!

I have said it a thousand times that until you have lived with chronic pain, or any other chronic condition for that matter, you really don't know what it's like.  Believing that it is possible to have pain that never ends just isn't something you can grasp, until you have actually experienced it.  I know that until I developed this debilitating condition, I wouldn't have thought it possible.  I know that there were times prior to my experience with chronic pain that I would roll my eyes when people started talking about their never ending pain.  I thought they were probably hypochondriacs at best, and drug addicts at worse.  You know that thing they say about karma being a bitch?  Well, they were right!

Those of us with chronic pain quickly learn which people we can trust, and which people we can't.  We learn that with some people, we can be honest about how we feel, and which we stick with a smile and those lying words: I'm fine.  We learn that some family members, who see the struggle that we go through day in and day out, still don't believe that we are honestly suffering from anything.  And, we learn that some friends will be there for us more than those we call family.

We suffer loss as we watch friends and family drift away from us.  We know that it's hard on them to try and include us in their live's, only to be told that we are too ill to participate.  We wish that they understood that even though we may not be able to attend the family gathering, that just being asked is often all we want from them.  We wish that friends would be willing to come sit with us and talk for awhile, instead of always finding reasons why they can't.  And, we wish that they would remember the times we were there for them before we were struck down by this cruel enemy.

We also learn that we have to protect ourselves, because those we love are frequently the ones making us worse. We know that people get tired of hearing about our aches and pains, or our latest doctor's appointment.  But what they don't realize is that this has become our existence, and we don't have anything else in our lives. We learn that some people are toxic both to our self esteem and our physical health, and, with heavy hearts, we shut those people out of our lives.  It may be that they are grateful that they don't have to deal with us anymore, while we mourn their loss like a death.

I have been blessed by meeting people online who are not only living with the same thing that I am, but who truly understand.  We are there for one another in good times and bad.  We cheer on one another's victories, and listen with heavy hearts to one another's losses.  We don't always have the same illness, but we get it.  I may not ever meet these people anywhere but in the virtual world, but they have shown me more love and understanding than many people I know in the real world.  And, for this, I am thankful.

Saturday, February 28, 2015

That Elusive Silver Lining

I have been living with chronic pain for the last 15 years. At that point in my life, if you would have told me that I was going to reach a point in my life where pain was my constant companion, I would have told you you were crazy!   I was mother to three small boys, a wife to a man to with a progressive neurological disorder, and I thought life was pretty good.  And then one day, I bent over to pick up a piece of paper, and life was never the same. For three years, I endured physical therapy (which didn't help), epidural injection after epidural injection, and I did everything the doctor's told me to do, praying all the while that the next thing would work.

After many doctors, and three long years, I finally found a doctor who knew what was wrong with me.  The doctor was quite honest about the surgery I was going to have.  He explained everything in detail and made sure that I understood the risks as well as the benefits.  One of the things he told me was that there was only a 50/50 chance that the surgery would work.  I told him that I would take my chances.  When you live with pain for any extended length of time, you become willing to do anything if there is a ghost of a chance that it will give you relief.

Well, I had six good months.  At the end of that six month period, the pain returned with a vengeance.  I had to leave a job I loved.  I felt like a failure as a mother.  I worried about how I was going to take care of my husband when I couldn't even take care of myself.  I fell into a very deep depression, and even attempted suicide.  I spent two weeks in a mental health care facility, and I thank God for that everyday.

One of the things that I dealt with at time is feeling that I didn't know who I was anymore.  I wasn't the bread winner any longer; I wasn't the proverbial soccer mom that I wanted to be; taking care of my husband and my home became more and more difficult.  So many of the things that I saw myself as were snatched away from me, and there was nothing there to replace it.  I felt that I was simply drifting in the ocean, with no shore insight.

In time, I learned to let go of the person I was in the past.  I had to acknowledge my grief as I said goodbye to the person that I lost.  It was an extremely painful process, but I'm here on the other side.  Of course, there are still days when I want my old self back, but I realize now that there is only a slim chance that I will go back to the way things were.  I am learning to love the new me, and to accept her limitations.

I have noticed that I can be very short with some people.  There are days when my patience is non-existent.  I now have a tendency to say exactly what I'm thinking.  Sometimes it works, and sometimes it doesn't.  I have developed a much thicker skin, and I count that among my positive changes.  Before all of this, an unkind word could devastate me.  Now, even though words do hurt, I can usually let it go.

We've all heard the old saying that every cloud has a silver lining. I had begun to believe that none of the clouds around me had been fitted for there silver lining.  And then I decided to count my blessings instead of lamenting all the bad things that had happened to me.  I realized that I had reserves of strength that I never realized I had.  Anyone who lives with chronic pain knows how strong you have to be in order to survive.  I still have a family who loves me, and for the most part, understands what I'm going through.  Each of us has a silver lining, even though we may not be able to find.  No matter how elusive your silver lining may be, keep looking for it.  You'll be glad you did.

Thursday, September 18, 2014

Another Year Older

Fifty two years ago, I arrived on this planet.  It's really amazing that I've made it this long, since I wasn't expected to survive for very long.  And yet, here I am, and I must say that it's better than the alternative.  With luck, I'll have another thirty years or so.  I'll see my sons married, and I'll be able to hold my grandchildren.  For the most part, it's been a pretty good life, and I am blessed in so many ways.

The last year has brought on many changes, especially where my health is concerned.  Unfortunately, most of the changes are not good, but I refuse to curl up in a ball and die.  I was recently diagnosed with both Type 2 diabetes and COPD.  And while neither of these things is positive, they are causing me to make some positive changes.  I am trying very hard to eat more healthy, and I am actually losing some weight.  I also quit smoking by using an E-cigarette.  I also learned that I am severely deficient in Vitamin D.  I'm taking 50,000 units of Vitamin D for the next 3 months, and hopefully, that will turn things around.

There are days when my body tries to convince me that I am eighty two and not fifty two.  Between my back, knees, and the fibromyalgia that runs through my entire body, I have days when the pain is unbearable and I feel that I cannot handle it for another minute.  And yet, I soldier on, as do all of the pain warriors that I know.  We are far stronger than we, and others, give ourselves credit for.  And, for the first time in a very long time, I have some hope that this will improve in the very near future.

As many of you know, I am in the process of seeing if a pain pump would be appropriate for me.  A couple of days ago, I completed the second step of the process.  I underwent the psychological exam required to receive a pain pump.  Of course, I was nervous, but it wasn't nearly as awful as I had built it up in my mind.  The doctor asked me numerous questions, and I had to fill out a couple of personality type questionnaires.  And, while it will be a couple of weeks before I know the results, the psychologist told me that I had a good grasp of the process and that my expectations weren't out of line.  For the first time in a long time, I have hope that I may get some real relief from this unending pain.

In some ways, it doesn't seem possible that I am fifty two years old.  Mentally, I still feel quite young, and when I say young, I mean my 30's.  There are days when I look at my boys and feel shock that they have really grown to be young men.  Where have the little boys gone?  I still miss the smell of sunshine, dirt, and little boy smell that used to cling to them after playing outside.  I miss feeling their little bodies curled up in my lap when I would comfort them or simply sit and talk.  And yet, I feel a sense of joy when I realize that I have brought them from the innocence of childhood to becoming productive young adults.  Nothing I have ever done gives me a greater sense of pride.

Yes, I've spent fifty two years on this planet.  There have been hard times, and joyous times;  there have been times when I felt that my heart would break in two, and there have been times when I felt my heart would burst from joy; and there have been times when I felt that the physical pain that is always with me now would be the undoing of me.  But I continue to persevere, and I continue to find the joy in life.  I realize how very blessed I am, and I am looking forward to what the future holds.

Saturday, September 6, 2014

It's Been Awhile

Hello, my friends!  Well, it's been quite awhile since I've written anything, but life hasn't slowed down so much that I have nothing more to say.  The last few months have been jammed packed with things, and I just haven't been able to find the time, or the inclination, to sit down and write much more than a grocery list.  That really isn't fair to those of you who have been such loyal readers of my humble little blog.  And so, today I'm going to try and bring you up to date with my crazy life.  Some of it is pain related, but most of it really is just the turning of life's wheel.

Unfortunately, my health hasn't been the best lately.  Beginning in February, I started experiencing horrendous chest pains.  The first time that I went to the ER with this, I was admitted and then sent to another hospital the next morning for a cardiac cath.  The cath did show a  50-60% blockage in a major artery, however, they don't actually put in a stent, or do anything else until you reach 70%.  The doctors put me on some new medications, and I thought this would be the end of it.  Unfortunately, it was only the start of a long journey.

I know that many of you have experience trips to the ER.  And when they give you the discharge paperwork, it always tells you to return if your symptoms return or become worse, especially if you are dealing with chest pain.  I took it seriously; my hospital did not!  One doctor decided that I was crazy, and would give me atavan every time I came in.  She had the mistaken impression that my chest pain was panic attacks, and not a legitimate chest pain issue.  After being treated like a hysterical female one time to many, I finally went to another hospital in another town.  Finally, I was taken seriously and was diagnosed with arterial spasms within the heart itself.  This causes angina and it hurts!  I was put on nitroglycerin, and this has gotten things under control finally.

Most of you also know that my husband, Dale, is also disabled.  He has a condition called Spinal Cerebellar Ataxia, which is much like some of the forms of muscular dystrophy. Last year, his condition caused him to be hospitalized for nearly a month.  So far, knock on wood, he hasn't had a new flare up since that time.  In April of this year, however, Dale started to have chest pain.  I immediately called an ambulance, and we headed back to the ER.  The ER doctor couldn't figure out what was wrong with him and wisely admitted Dale to the coronary care unit.  He underwent a multitude of tests, including an EGD.  During this test, a long tube with a camera is inserted into the esophagus and down to the stomach to look for any signs of illness, such as ulcers and the like.  They did find a lesion in his esophagus, but because he had been on blood thinners in the hospital, they couldn't biopsy it at the time.  He is supposed to go back for another one, but being a stubborn male, that hasn't happened yet.

Around this time, my back pain started getting much worse.  My doctor decided that I needed to see my neurosurgeon again.  I really didn't want to have any more surgery, despite what they might find, but I decided to see what the doctor had to say.  Actually, to my surprise, the neurosurgeon told me that I didn't need any additional surgery at this time.  He did, however, believe me when I told him about the pain I have been experiencing.  And so, I am now going through the steps to see if I qualify for a pain pump.  I have seen the doctor one time so far, and in a couple of weeks, I go for a complete psychological workup to see if I would be a good candidate for the pain pump.  I really hope that my craziness stays hidden long enough to get through the process!  For the first time in a long time, I actually see some light at the end of the tunnel.

Obviously, all of these things have added up to push the stress levels way up.  But there were a couple more things that nearly pushed me over the edge.  Most of you know that we have had issues with our oldest son.  When you compare the three of them on paper, you would probably think that the youngest two were the older ones.  We all mature at our own rates, but it really is time for this boy to grow up and start taking responsibility for himself and his actions.  Around the end of June, Chris fell into a deep depression,  He had lost yet another job, and saw very little hope for himself.  Once again, we allowed him to move back into our home to help him get it together.  And once again, Chris sat in the bedroom, watching TV and eating.  If we asked him to do something simple, like take out the trash, he would tell us he would do it later, and either Dale or I ended up handling things.  Then, he started threatening suicide.  Needless to say, we took him seriously.  I had him put into a crisis stabilization unit and that was a complete waste of time.

About two weeks after that, Chris fell apart once again, and we took him to a Mental Health Hospital.  That was a terrifying experience.  Chris tried to jump out of the car on the way there.  We were driving on the interstate at the time around 60 miles per hour.  Thank God, he didn't do it.  Once we reached the hospital, he decided that he wasn't going to stay, and we had to call the police to find him after he ran from us when we arrived.  Chris was not at all receptive to treatment and after a week, they sent him home.  Once again, Chris was home, sitting in the bedroom, watching TV and eating.  He blamed all of his problems on me.  I should make sure he had a car.  I should make sure he had rides to go to the doctor.  I should take him to all interviews and potential jobs.  I should figure out how he could accomplish anything.  Well, I refused!  And then he turned it into me refusing to anything to help him.

Living with my son was becoming unbearable.  He wouldn't do anything but sit on his butt, eat and watch TV.  Everything I did, or didn't do, was turned into an attack on him.  Finally, after I told him that he needed to do somethings for himself and that I was not his personal taxi and maid service, the shit hit the fan (excuse my french!).  I was lying down because my back was hurting.  Chris came into the room, and I raised up and looked over my shoulder to see what he wanted.  At the point, Chris threw my cell phone at me.  It struck me in the shoulder, hard enough to leave a bruise, and I twisted so hard from it that I actually tore a muscle in my back.  That was the last straw, for both my husband and me.

My husband told our son that he was no longer welcome in our home and he needed to leave.  He let Chris in long enough to get his things and then told him to get out.  At the advice of the local police, we have take out a restraining order against him, and we haven't seen or heard from him since he left.  This is one of the hardest things I have ever had to do in my life.  As a mother, your first instinct is to protect your child from the things life can throw at you.  There comes a point, however, when you are no longer protecting your child; you are preventing them from learning to take care of themselves.  I pray everyday that my boy will return soon, a more mature and responsible young man.

So there you have it.  This are just some of the things that have happened over the last few months which have kept me away.  Luckily, things have started to calm down a bit and I hope that I will be able to share with you on a more regular basis.  To those of you who have known of the things we've dealt with, thank you for the love and prayers you've shared with us.  It's been a rough stretch for all of us, but there is always hope, even if we have trouble finding it sometimes.

Sunday, March 30, 2014

One More Thing

Those of us who live with chronic pain are usually wondering if one more thing will come along to complicate out battle with chronic pain.  We wonder is we will develop another medical problem.  We wonder if we will be required to do something that we know will cause us more pain.  We wonder if someone in out family will become ill, requiring us to take care of them.  We are always trying to prepare ourselves for just one more thing.  And often, we think that if that one more thing shows up, we just won't be able to deal with it.  Well, I have news for you.  The people I know who live with chronic pain are some of the strongest people I know!

There is always going to be one more thing.  That's usually the way that life works.  The unexpected has a way of showing up at times when we just feel like there is no way we can possibly deal with it, or continue to function because of it.  And, when we are through bemoaning our fate, we pick ourselves up, dust ourselves off, and tackle the new one more thing.  Like I said before, those of us dealing with chronic pain are a lot stronger than anyone, including ourselves, give us credit for.

During the course of the last couple of weeks, I have been dealing with that one more thing.  I can tell you that at first, I thought that it was going to kill me.  I honestly thought that death was just over the horizon, and there was nothing I could do about it.  The fear of not knowing what was going on with me was almost worse than the actual problem.  What was my one more thing?  I started having severe chest pain.  And believe me, when I say severe chest pain, I am not exaggerating!  I felt like I had the proverbial elephant sitting on my chest.  It felt like someone had reached through my chest, grabbed my heart, and started squeezing with all their might.  

The first time that this hit me, there was no question but that I had to go to the Emergency Room.  I knew that I was having a heart attack.  My dad had numerous heart attacks, so I knew what it looked like.  After many hours in the ER, the doctor told me that I wasn't having a heart attack, but she didn't know what the problem was.  Because of this, I was admitted to the hospital.  The cardiologist came to see me that morning, and told me that I needed to have a cardiac catheritization.  I was loaded into an ambulance and driven to one of the hospitals in Louisville for the procedure.  The cath showed that I indeed had a blockage of 50-60% in two branches of the same artery.  They do not stent the artery until a blockage reaches 70%, so mine is being managed with medication.

I thought that this was the end of it.  I thought that this was an isolated incident, and this wasn't going to come back.  I thought that this was one more thing that I could put on the back burner.  I thought wrong.  Within a couple of days the pain came back, and I made another trip to the ER.  They treated me for the pain, and sent me on my way.  And the pain came back again.  The doctor I saw this time informed me that I was having panic attacks, and prescribed me ativan.  He told me to take one of the pills, when the pain started and I would be fine.  Well, the next time the pain came back, I took one of the pills, and I was incredibly calm.  I was in severe pain, but I was incredibly calm about it!

The next onset brought another trip to the ER and another hospital admission.  This time, they informed me that they believed I had an ulcer.  They told me to set up an appointment for an EGD, and once again, sent me on my way.  By this point, my family was tired of the whole thing.  The next time that the pain hit, they refused to take me to the hospital, telling me that they weren't going to do anything that it was pointless.  I literally sat in my chair and cried for four hours straight.

The very next day, at just about the same time, the pain came on again.  This time, I insisted that my son take me to the hospital again.  I told him that I wasn't going through the same ordeal I had gone through the day before.  I also told him that I wasn't going to our little, rural hospital again.  I told him that we were going to one of the larger hospitals in the area.  This time, I finally got answers, along with some much needed relief.

According to the doctor I saw in this hospital, I am having spasms in the artery in my heart that contains the blockage.  He explained that it is a very painful condition, and that it can sometimes lead to a heart attack.  He also said that he thinks I might have an ulcer, so an EGD is coming very soon.  Finally!  I had some answers!  I left the hospital with four more prescriptions.  I have two different types of nitro.  One I take everyday, and it is long acting.  The other one I take when I have an attack.  So far, it seems to be helping.  I haven't had an issue in two days!

So, this is my current one more thing.  At first, I thought that I couldn't handle one more thing.  I thought that if I had anything else to deal with, it would leave me a blubbering mess in the middle of the carpet.  However, I'm stronger than I give myself credit for.  I'm going to deal with this one more thing and keep going.  I'm going to do the things I need to take care of myself.  Understanding what's going on with me helps.  And, even though I dread it, I know that another one more thing is somewhere down the road.  That's life!  Even though I'm not looking forward to my next one more thing, I know that I'm strong enough to deal with it, just like all pain warriors are strong enough to deal with their next one more thing, too.

Sunday, March 2, 2014

Goodbye, Old Friend

Yesterday, I learned that a friend of mine from high school passed away.  Immediately, I was awash with both sadness at her passing, and beautiful memories from our high school days.  There are days when I still feel like a kid in high school, and wonder how and when I became old enough to have college age children.  But there is nothing like the passing of someone your own age to bring your own mortality crashing down upon you.

This beautiful woman touched so many lives at All Saints.  Not only was she beautiful on the outside, she was beautiful on the inside, where it really mattered.  In 1978, I was a shy, awkward 15 year old.  I had an emotional breakdown at this time, and the pressure of returning to my home high school was crushing.  Luckily for me, my parents were able to send me to boarding school, where I could get a completely fresh start.  My friend was one of the first people I met.  I had never known anyone like her, and I was completely shocked that someone like this would actually want to be my friend!

I know that my life wasn't the only one that she touched.  This is a person who will truly be missed by all who knew her.  I only wish that I had had the courage back then to tell her how much she meant to me.  So often, we allow fear to stop us from letting people know how they have touched our lives.  We don't want to embarrass ourselves, or the other person.  We don't speak out due to fear of how our message will be perceived.

I have decided that I don't want to let another day pass without letting those who matter to me know it.  There is nothing to feel embarrassed about by letting another soul know that they have been a blessing to you.  There is nothing shameful in telling someone that you love them.  We need a lot more of that in this life we are living.

I also hope that I can learn to appreciate the life I have been given.  Yes, I have some pretty daunting physical problems, but the fact of the matter is I am alive!  I have been blessed with a husband who loves me.  I have three wonderful sons, who amaze me every day.  I still have my mother, who is my dearest friend in this world.  I have friends who care about me, and whom I care about in return.  I even have my 2 cats and my dog, who make me laugh every single day.

I hope that everyone who reads this take a moment to reflect on the blessings they have been given.  We all have something in our lives to be thankful for.  I also hope that you take the opportunity to tell someone that you love them.  You will gain so much more from it that you can imagine.

Wednesday, October 30, 2013

My Husband's Condition

I have mentioned on several occasions that my husband and I are both disabled.  I have discussed my conditions, and their effects in numerous articles, but I haven't spent a lot of time discussing Dale's condition.  It is a fairly rare condition, and there is no cure for it at this time.  It is progressive and debilitating.  We have been dealing with the ravages of this disease for over ten years, although it has only been in the last three that we have actually had a diagnosis.  Dale has a condition called Spino-Cerebellar Ataxia, or SCA for short.  There are numerous types, some hereditary and some not.  Thanks to genetic testing, we know that Dale has the non-hereditary type.

According to the National Institute of Neurological Disorders and Stroke, SCA is defined as the following: 

"Ataxia often occurs when parts of the nervous system that control movement are damaged. People with ataxia experience a failure of muscle control in their arms and legs, resulting in a lack of balance and coordination or a disturbance of gait. While the term ataxia is primarily used to describe this set of symptoms, it is sometimes also used to refer to a family of disorders. It is not, however, a specific diagnosis.
Most disorders that result in ataxia cause cells in the part of the brain called the cerebellum to degenerate, or atrophy. Sometimes the spine is also affected. The phrases cerebellar degeneration and spinocerebellar degeneration are used to describe changes that have taken place in a person’s nervous system; neither term constitutes a specific diagnosis. Cerebellar and spinocerebellar degeneration have many different causes. The age of onset of the resulting ataxia varies depending on the underlying cause of the degeneration."
For many years, we were told that Dale was having strokes.  Periodically, Dale will experience a progression of his illness.  During these progressions, his symptoms seem to multiply exponentially, and the symptoms do resemble those of a stroke.  And even though an MRI shows no sign of a stroke, many doctor's will simply label what they are seeing as a stroke because they don't know what it is that they are looking at.  It only took 10 years for us to find a neurologist who had any experience with this condition.  Within minutes of examining Dale, the doctor informed us that he had never had a stroke, but that he knew what was wrong with him.  We finally had a diagnosis.
We don't know what caused Dale's ataxia.  We do know that the long delay in his diagnosis probably put him in the wheel chair.  Because it took so long to get an accurate diagnosis, he did not receive any real therapy.  This caused his muscles to atrophy, and they cannot be brought back.    And while no one knows for sure, it is thought that his SCA may be the result of chemical exposure when he was stationed in Saudi Arabia during the first Gulf War.  Unfortunately, we will probably never know the true cause.

The physical effects of this disease are devastating to a man who worked in physical capacities all of his life.  Dale spent 14 years in the army, defending his country.  He worked as a mechanic and in construction.  The body he had depended on for his livelihood suddenly betrayed him.  SCA came on slowly around the time Dale turned 40 years old.  It began with a loss of feeling in his feet.  Then, he began to stumble when walking, leading to an inability to tell if he had actually picked his feet up from the ground when taking a step.  Eventually, he began to lose muscle control in his arms and hands.

SCA effects coordination of all muscles.  He is beginning to lose control of swallowing and chokes frequently.  Chewing is difficult, and he will bite his tongue and the inside of his mouth with alarming regularity.  Eventually, he will lose control of the muscles controlling his breathing.  Dale is still able to control large muscle movements.  He can stand while holding onto things; he can wash dishes and do laundry.  Writing is becoming impossible as it involves fine muscle control.  His speech can be very difficult to understand, and it becomes worse when he is fatigued.  Dale has horrible muscle spasms and tremors, causing severe pain.

There are also psychological effects associated with the condition as well.  Dale suffers from periodic bouts of depression, some caused by the physical effects of the condition, and others brought on by the thought of everything that he has lost.  The disease has caused him to lose a great deal of impulse control.  He can have severe mood swings.  And the thing that is hardest for all of us to deal with is his loss of the ability to control his temper.  He doesn't get violent, however, things that would be a mild annoyance for you and me can cause him to have temper tantrums, which is the best way I can describe it.

Watching him go through this is heartbreaking for me.  Dale is no longer the man that I married, but we all grow and change, and it doesn't take away the love that I have for my husband.  We have learned to adapt.  We still take care of each other.  We are still there for one another in the ways that truly matter.  When he is down, I try to cheer him up, and he does the same for me.  The hardest thing of all is knowing that there is no cure for this devastating condition.  Dale will continue to get worse, and there will come a day when I am no longer able to care for him physically, and I will have to make the decision to place him in a nursing facility.

But until that day comes, we will continue to take care of each other.  We will continue to honor our wedding vows "for better or worse; in sickness and in health".  And while I say that he is no longer the man I married, he is still the man that I love.  He is still the man that I vowed to spend the rest of my life with.  He is still the father of my children.  And he is still my hero.