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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.
 
 

Monday, October 28, 2013

Beware the Snake Oil Salesmen!

I belong to several support groups on Facebook, designed to offer comfort and companionship to those of us suffering from various chronic pain issues.  Because of our conditions, many of us have become virtual shut-ins.  The pain makes it almost impossible for many to leave their homes, and we have lost so many friends in the "real" world.  Our friends in the virtual world provide us with the friendship and support that we so desperately need.  It is within these groups that we are able to share our joys and sorrows.  We are able to talk about the parts of our pain that we don't feel comfortable sharing with others.

Unfortunately, a menace is creeping into these safe havens.  I am talking about the old-fashioned snake oil salesman.  According to The Free Dictionary (online), a snake oil salesman is defined as the following: snake oil
n.
1. A worthless preparation fraudulently peddled as a cure for many ills.
2. Speech or writing intended to deceive; humbug.
These people pose as pain sufferers in order to join our groups.  Once they have established themselves, they start hawking their wares.  Many attempt to sell all natural cures for our ills.  Others are much more blatant and actually attempt to sell us illegal drugs.  Others offer loans, knowing that the chronically ill often suffer from financial woes as well.  This is just unconscionable!
 
The majority of these groups clearly state that advertising is not allowed.  We have too many other problems to have someone plying us with offers of miracle cures.  The majority of us are too savvy to be tempted by these hucksters.  Unfortunately, we all know what it is like to feel so desperate for some type of relief.  While the majority of us would never take advantage of these "offers", there is that small niggle of hope that creeps in, making us think, "What if this one might work?".  I worry about that one person who is so desperate for relief that they get taken advantage of.
 
To those of you suffering from chronic illnesses, please do not fall for these promises of miracle cures.  I promise you, if they worked, you wouldn't be hearing about them in small, online support groups.  You would be hearing about them everywhere, and believe me, the big drug companies would have already appropriated them in order to make even more money than they already do!  Even more dangerous are those trying to sell illegal drugs.  As difficult as it is to get doctor's to prescribe medication at this time, this is an incredibly dangerous thing to involve yourself with. 
 
To those of you preying on the chronically ill, shame on you!  I firmly believe that there is a special place in hell for people like you.  Have you no shame?  Were you raised to be a con artist?  I wouldn't think so, but apparently, there is something in your nature that makes you think it is alright to take advantage of the weakest among us.  And while I seriously doubt that you will read this, I want you to know that we aren't falling for your con!  We see through you!  And we will continue to report you to those who manage the groups we belong to.
 
 
 

Friday, October 25, 2013

What's Wrong With Doctor's These Days?

I'm wondering what is wrong with doctor's these days?  They all seem to be afraid to actually treat their patients.  As more and more states are cracking down on "pill mills" and drug abusers, chronic pain patients are being labeled as second class citizens.  We are all being lumped in with the drug abusers, and are not being taken care of by the doctors we depend on to try and help us gain a little quality of life.  More and more states are enacting laws which almost make it criminal to take pain medications.  Doctor's are afraid of losing their licenses, and they have just stopped taking care of the people who need them the most.

I am not a drug addict.  I am not looking for a high.  In fact, at the moment, I do not take any narcotic pain medication.  It isn't that I don't need it; I simply cannot find a doctor willing to prescribe it.  Many of the pain clinics are not willing to treat you if you are not willing to undergo injections of some sort.  The truth is, it is through the injections that they make the majority of their money.  I don't want anymore epidural injections.  I am afraid that they do more harm than good, and I have not had a lot of success with them.  Because of this, I am having trouble finding a pain management doctor.

The following is a portion of the modern Hypocratic oath:

"I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick."

I think too many doctor's have forgotten about the oath that they took.  Doctor's are so afraid of the consequences of treating the pain patient that they have let this part of the oath fall by the wayside.  We are not considered important anymore, and this is a sad state of affairs.

I think we can all agree that preventing drug addiction and death's from overdosing on narcotics is important, and there have to be certain controls in place.  The true pain patient does not mind periodic drug screenings.  We do not mind having to use the same pharmacy, or receiving our medications from only one prescribing physician.  What we do mind is automatically being labeled as a drug abuser, or worse, being refused any treatment at all.  We simply ask to be treated as people, with a medical condition which may not be easy to treat.  We would not allow an animal to suffer, and yet, we seem to think that there is nothing wrong with allowing a person to suffer.

The Golden Rule states "Do unto others as you would have them do unto you".  If I had the power to ease the suffering of another human being, I would.  I would not expect someone to live in unending pain.  I would not expect someone to live the life that so many of us are having to live today.  While we may not be able to march on Washington, we can all write letters.  I urge you to write to your state and national representatives and let them know what we are going through.  They need to hear about those of us who are being made to suffer because of the laws being enacted today.

And to our doctor's, I urge you to find the courage to once again begin treating your patients.  You cannot judge everyone of us as being a potential drug addict.  What happened to "First, do no harm."?  I realize that this may be taken to mean you don't want to prescribe medication which has a potential for abuse.  But these medications have a place and fill a need.  Don't forget that there is an entire segment of the population who need you, and yet you have turned your backs on us.  Please, take care of the people who need you, instead of looking for the drug addict behind every corner.

Sunday, October 20, 2013

Paying it Back

I am so tired of the payback that comes along with living with chronic pain.  Those of you who live with chronic pain know what I'm talking about.  It's that time when our bodies give us even more pain because we dared to do something we wanted to do.  It seems that every time I do something that will make me happy, I suffer even more than usual.  And I resent it, because like so much that goes along with this nightmare condition, it doesn't seem at all fair.

I had a wonderful day on Friday.  Although the day started out with pain, as most of my days do, I didn't let it stop me.  Granted, I couldn't really get moving until around 2 in the afternoon, but that was when my day really got started.  It had been ages since I had gotten a hair cut.  I was starting to look like a ragamuffin!  Not only that, my gray had really come in nicely, and it was time for it to go away!  So, the first thing I did was go and get a haircut.  The same person has been cutting my hair for quite awhile and I trust her.  She suggested something slightly different from the way I've been getting it cut, and I absolutely love it!

After the haircut, there was even more gray visible, and I refuse to look like a little old lady yet, even though I feel like one most days.  My next stop was the drug store, where I picked up some hair color.  I then headed straight for the house to color my hair and do my makeup.  Why was I working so hard to look human?  You see, I had a date that night!  The date wasn't with my husband, but with my 18 year old son.  He had asked me out to dinner because we haven't spent that much time together since he's gone away to college, and we wanted some time to just catch up with one another.

Because of this, it was important to me that I looked nice.  Chronic pain has taken away a lot of my desire to do anything for, or to, myself.  I rarely put on makeup, and washing my hair is usually the most I manage.  I hate to say it, but I've almost stopped caring about what I look like.  I used to never leave the house without being completely put together.  That meant my hair was done, my makeup was on, and I was dressed nicely.  I say I did it for myself, but the truth is that I wanted to make a good impression on others.  Now days, I just don't care what other people think.

As soon as I finished putting on my makeup, Matt came through the front door.  I was excited to see him, but I was also excited to actually get out of the house for awhile.  For a couple of hours, I could forget about living with pain.  I could forget about taking care of my husband (I know that sounds bad, but sometimes, everyone needs a break!).  For a couple of hours, I could just be Kim and enjoy my time with my son.  Needless to say, we had a wonderful time together!

Occasionally, the thought of my payback would sneak into my mind, but I did my best to push it away.  I thought that I wouldn't be able to sleep Friday night, and that Saturday would be filled with pain.  However, I did sleep Friday night, and while I was a bit more sore than usual on Saturday, it wasn't too bad.  I even cooked a really good dinner last night for my husband and I.  I was starting to believe that I had actually skipped the pay back phase.  WRONG!

Around 10 pm on Saturday night, everything started to hurt.  My muscles felt like someone had taken a baseball bat to them, and my back and right hip were killing me.  I took my medicine and tried to go to bed, but sleep wouldn't come.  Finally, around 3 am, I got up in tears, and took another dose of my medicine, which I never do.  I managed to sleep from about 6 am until 8, but I lay in the bed until after 10 because I just couldn't get myself out of it.  Right now, the pain is so intense, and nothing seems to be easing it.  I would cry, but it wouldn't help.

And even though I am suffering today, I wouldn't trade Friday for anything.  It had been a very long time since I did anything for myself, and I needed a little pampering.  We get so busy dealing with our health problems, taking care of our families, and trying to take care of our homes, that we often forget that we need to pamper ourselves on occasion.  It may not involve going to the hair dresser, or out to dinner, but we have to remember to do things just for us.  And even though we know that there will be a payback, it is just so worth it!

Saturday, October 12, 2013

Depression, Part Two

I've written before about the fact that pain and depression are insidious partners.  We all know that it's hard not to experience at least some depression when we live in pain day in and day out.  I have recently felt myself slipping into a depression and I am fighting very hard not to let it consume me.  As some of you know, I recently have been going through some health issues which are not completely related to my pain issues.  I have been to the emergency room three times in less than three weeks, twice for dehydration and once because my blood pressure was through the roof.

I also went to see a new doctor.  I had high hopes that this doctor was going to be a perfect fit for me.  The doctor was a woman, which I liked, and she and I are the same age.  The paperwork was very much in depth.  It asked the usual questions about your health, but it also asked about your diet, exercise levels, and any past trauma.  And of course, it asked about any surgeries that you have had.  My brain surgery as an infant is always the first thing that I put down, and the one that usually elicits the most questions.  I answered all questions honestly.  Obviously, my diet isn't the best, and exercise is a distant memory.  I also told her about my sexual molestation as a child and an assault that I suffered as an adult.

I really didn't expect the last two things to be a big deal.  Not many doctors, with the exception of psychiatrists, dwell on that sort of thing.  As usual, she asked me a great deal of questions, and she asked me to explain my brain surgery to her.  I went through all of the details, including the fact that I wasn't expected to survive.  And, then I noticed her smile, which was just filled with pity!  I do not like pity!  She actually looked at me, and said something like, "You just had an awful start and it didn't get much better, did it?"  I didn't like that, and it didn't bode well for the rest of the questionnaire, in my opinion.

So, we came to the molestations and the abuse.  I have made no secret about the fact that I was molested twice when I was around seven years old.  A neighbors grandfather fondled me and then the 13 year old across the street raped me.  I was 22 before I told anyone about what had happened, and luckily, I was believed.  But back to the doctor.  She asked me all sorts of questions about what had happened, and I told her everything about it.  Once again, I saw that smile filled with pity.  Next, she asked me about the assault.

I don't talk about that very much, not because I'm ashamed of it, but because it isn't something that I like to dwell on.  This happened in 2003, approximately three months before my back surgery.  A friend of Dale's was over at the house on New Year's Day.  I could tell that he was messed up, but I assumed that he was still drunk from the night before.  I hadn't been around people who used drugs, and I found out the next day that he was using meth.  Anyway, I was tired of the way he was acting and I told him to either go sleep it off, or get the hell out of my house.  Apparently, this was the wrong thing to say!  The next thing I knew, this man punched me in the face as hard as he could, and he just kept punching.  I tried to defend myself, but it was almost pointless.

At one point, I passed out and fell forward.  When I did, it moved him back just enough that Dale was able to dive out of his wheelchair and drag this man to the ground.  My youngest son was on the phone with 911 and Dale had the bastard in a headlock on the ground.  I stepped across them and got to the phone.  The next thing I knew, the man got away from Dale and went running for the front door, slamming my son into the wall as he ran past him.  Blood was streaming from my face, Dale was trying to wipe my face, and the police were running into my house.  The man was arrested, and spent 8 months in jail for the assault.

I was taken to the hospital, where I discovered that my nose was broken, an earring was ripped from my ear, and I was deeply in shock.  I had to have stitches to put my ear back together and eventually, I had to have surgery to fix my nose.  Obviously, this was an incredible trauma, and it still comes back to me on occasion. 

So, back to the doctor.  She looked at me and that pitying smile was back across her face, replacing the shock that had been there while I was telling the story.  She mentioned that I had been through so much trauma in my life, and I agreed with her, but told her that I had dealt with it through a great deal of therapy.  She then looked at me and told me that my molestation was the reason that I am not in good health, including causing my chronic pain!  I couldn't believe it!  She went on to tell me that she didn't believe in pain medicine or anti-anxiety medicine, but that she was going to get me through it and that was that, as far as she was concerned.

I know that it wasn't her intent, at least I don't think that it was, but she made me feel that all my health problems were my fault.  It was almost like she was saying that my back wouldn't be a mess, my knees wouldn't be shot, and my blood pressure wouldn't be out of control, if only I hadn't been through all of this.  I was absolutely in shock over everything.  I felt that I had dealt with all of this, and in less than 20 minutes, she brought everything back, including the shock and the depression.  And all of this was before she even started to examine me physically!  I was looking for a medical doctor, not a psychiatrist!

Needless to say, she isn't the right doctor for me, and I have to start the process of finding a new doctor all over again.  I have trust issues, needless to say, and the ability to trust my doctor is essential for me.  In one fell swoop, she destroyed my ability to trust her.  I have to have a doctor, but I don't even want to think about seeing another one.  And now, I am in the throes of a major depression, all because I tried to find a new doctor.

I know that this will pass, and I will get through it.  I'm a strong person.  I know this because many people wouldn't be able to live through all of the things that I have without being incredible strong.  I just didn't need someone telling me that all of my health problems were the result of the things I have lived through.  I don't believe this.  If I did, I don't think that I could keep putting one foot in front of the other every single day.  I'm going to get through this, because I don't like the alternative.  Unfortunately, it's going to take me a while to get past this one.

Monday, October 7, 2013

Cherish the Good Days

Living with chronic pain is, if nothing else, a challenge.  We often struggle to do the things that we want to do, and force ourselves to do the things we have to do.  And, sometimes, we just have to realize that we can't do either one.  We have to learn to accept the limitations that our conditions force on us.  I have for years said that if you don't won't to see my dirty house, don't come over.  Of course, I say it half jokingly, but deep down inside, it really is an embarrassment that I can't keep my house in the shape that I really want to.  But once in awhile, the god's smile on us and we have that rarest of all things - a really good day!

Good days come with a lessening of the pain that we live with on a day to day basis.  The pain is still there, but it isn't as intense as it usually is.  Speaking for myself, a good day often either starts or ends with a good night's sleep.  Sleep is often a very rare occasion for so many of us.  We almost feel like our old selves again!  Good days can lead to feelings of euphoria, and a desire to do as many things as we possibly can, whether it be cleaning, shopping, cooking, or any of the many things which we often forgo because of the pain that they can either bring on or increase.  It's important to take it slow and not push ourselves too hard, and that is probably the hardest thing to remember when we are having a good day.

Today, I had one of those good days!  I actually slept for four hours last night, and when I woke up at 5:00 this morning, I felt like I had slept.  After feeling really achy all weekend long, I was quite surprised to discover that things felt pretty good this morning!  I got up and made coffee, and for a change, I enjoyed the quiet of the early morning.  Because the weather has turned cool after a weekend full of nothing but rain, I put on my fluffy winter robe and curled up in my recliner with a steaming mug of coffee.  I managed to read part of the book that I started this weekend, and I spent some time talking to friends in one of my support groups.  I didn't want to really let the thought fully form, but it felt like that start of a good day!

Jack had a doctor's appointment this morning and I had a couple of other errands.  Ordinarily, I dread the days when I know that I have to get out and run errands.  But as I sat there in my chair, drinking my coffee, I realized that I actually wasn't totally dreading getting out.  Once I started moving around, I also realized that I wasn't hurting quite as bad as I normally do in the mornings!  This day was really looking up!  Jack and I left the house with him driving.  We went from place to place, and I didn't even have to use my cane!  Once we got home, I took my medicine and then went in and took a nap.  Yep, it has been a really good day!

The thing that we have to remember when we have good days is not to overdo it.  There is a great temptation to try and cram everything into a good day that we haven't been able to do up to that point.  Doing six loads of laundry, washing all the dirty dishes, vacuuming the house, mowing the lawn, and shopping is not the best way to handle a good day.  As a friend of mine reminds us, don't forget to take baby steps!  My advice, when faced with a really good day is do something you really want to do.  Yes, I had to run several errands today, and I'm glad that I was able to take care of them without causing myself a huge increase in pain.  But the very best part of my day was spending time with my son.  I hope that the next time each of you finds yourself faced with a good day that you take time to do something just for you!  Believe me, you deserve it!

Saturday, October 5, 2013

Thank You for Pointing out the Obvious

This is an open letter to all of the doctor's, family member's, friend's, acquaintances, and strangers who have felt the need to point out the obvious to me.  Apparently, most of you think one of two things: 1.  I don't own a mirror; or 2.  I'm a complete walking idiot.  Let me set you straight real quick.  I most certainly own a mirror, and I promise that I am not an idiot.  So, thank you!  Thank you for pointing out to me that I need to lose weight.  If you hadn't told me, I probably would have never figured it out on my own.

Now, some people are quite nice and polite about it.  They hint around that losing just a little weight would probably help my knees.  Actually, losing a lot of weight is what is going to help my knees.  Unfortunately, I'm still going to have to have a double knee replacement.  I have to lose weight before I can have the surgery done in order to make the recovery process easier.  You also don't know that I'm absolutely terrified of this surgery, so who knows, maybe I'm holding onto the weight as a security blanket.

Others have been a lot more blunt.  I have been told that I am just fat, and there is nothing wrong with me.  I have been told that all I need to do is walk at least a mile every day in order to achieve inner peace or Nirvana or a complete and total cure for all that ails me.  Thank you again for pointing out the obvious.  But, you need to take a walk in my shoes.  I wish that there was a way to simulate what it feels like to have OA.  I wish you could feel, only for a moment, what it is like to have absolutely no cushioning between the bones that make up your knees.  Walk a mile?  My orthopedic surgeon has told me he is surprised I can walk around my house.  I'm doing the best I can.

I can't tell you the number of people who have told me that I never would have had back problems if I hadn't been overweight.  In some cases, that would be true.  You must have a screw loose not to realize that carrying extra weight puts additional strain on you body, and the more weight you carry, the more damage you do.  I get that, I really do!  But if you had taken the time to listen to me, you would know that my two surgeons who operated on my back told me, that in my case, my weight had nothing to do with it.  My back issues were inevitable, whether I was a size 2 or a size 22.

I have tried on many occasions to lose weight.  In fact, I have lost at least a small person over the years.  Unfortunately, I have regained that same small person, and her sister came along for good measure.  I have starved myself on an all liquid diet at one point, managing to lose 80 pounds in 3 months time.  I was doing Weight Watchers long before Jennifer Hudson heard of them.  And every time, the weight has come back on.  According to a psychologist I used to see, I did use the weight as both a shield and a security blanket.  Well, it isn't much protection anymore, but at 51, I just can't seem to lose the weight anymore.

I want to have weight loss surgery.  This is the one thing I want more than just about anything else.  My problem has been finding the right surgeon to do it.  We have a bariatric surgery center here in Bardstown.  Unfortunately, they haven't performed enough procedure's to be Medicare approved.  The other places near me want far more up front that I have been able to come up with.  Contrary to what many people think, living on social security just ain't all it's cracked up to be.

And to the strangers who think that it is ok to say unkind things, I am a person.  I have problems moving and walking, but my ears work just fine.  I hear the stage whispered, "Look at that lazy, fat woman", when I get a motorized cart at Wal-Mart.   I have heard you tell your friend that there is nothing wrong with me.  I assume you think that because I try to present myself well, I'm not missing a limb, or carrying an oxygen tank.   I am not judging you, and I would appreciate the same respect, not just from the stranger at Wal-Mart, but also for my friends, family, and acquaintances.

Friday, October 4, 2013

My ER Nightmare

As some of you who know me are aware, the last couple of weeks have been really rough ones for me.  I hadn't been feeling well for awhile, but, me being me, I kept putting off seeing the doctor.  I thought it would pass if I just toughed it out, and that was what I did.  Eventually, I started feeling like I was going to pass out every time I stood up.  That scared me, but it still wasn't enough to get me into the doctor.  I had things to do, places to go, people to see, and a son to chauffeur.  Then, I went to a convenience store to get some gas.  As I got out of the car, everything around me got incredibly bright, and then my vision sort of started to pull in on itself, like when you turn off the television.  On top of that, I got this incredibly loud roaring in my ears, and I could barely hear anything.  Now, this was enough to scare me!

I sat down for a minute until the feeling past, went in an paid for my gas, and went to pick my son up at school.  The minute he got to the car I told him I was sick and he was driving.  I told my husband what had happened at the store and he suggested that I check my blood pressure.  Normally, I am hypertensive and take two different blood pressure medications.  Imagine my surprise when my blood pressure register 88/50!  I knew that couldn't be right, so I checked it again....three times!  That's when my husband insisted that I go to the ER.  At that point, I agreed.

Now, on this trip, I had a fantastic experience, if a trip to the ER could ever be described this way.  I was treated with kindness and compassion.  The doctor and the nurses explained everything to me as we went along.  They checked on me frequently and I never felt frightened, just sick.  I was there for quite awhile, due to the dehydration and the two bags of IV fluids I had to have, but all in all, it wasn't nearly as bad as it could have been.

Six days later, it all started again.  I was having the same symptoms as before, with the addition of chest pain, which I knew was my costochondritis acting up.  We got to the ER, and the waiting room was wall to wall people.  We waited about half an hour, and I was then called back to the triage area.  Because I was having dizziness again, they took me back right away.  The minute I got to the back, I was put in a hospital gown and asked to give a urine sample.  Things seemed to be going about the same as they had before.  The nurse immediately put in an IV line and drew some blood.  I was helped onto the gurney, and they told me the doctor would be in soon.

This was at 8:30 p.m.  I sat there on that gurney and waited.  And waited.  And waited.  No nurse came back to the room.  No technician came to the room.  I would see people hurrying past the door, but no one even bothered to stick their head in the door and say, "We're busy, but we haven't forgotten about you."  Finally, around 11:30 p.m., the doctor walked in.  She did a quick exam, said she wanted a chest xray and told me that I was dehydrated again.  Because the doctor said it would be at least a couple of hours before I would be ready to leave, I told my son to go home and get some sleep, and I would call home when I was finished.  The doctor also said that I would need more IV fluids, and with that, she was gone.

I lay back on the gurney and tried to get as comfortable as possible.  And once again, I waited.  No one came in.  No one started the IV fluids.  No one stuck their head in the door.  Finally, a couple hours later, I was taken for the chest xray, and then I was returned to the room to wait some more, once again alone in the room, with no idea what was going on.  After two more hours, the doctor came to the door, she didn't even walk all the way into the room, and announced that she wanted a CT scan of my chest in case I actually had a blood clot, and not a flare up of my costochondritis.    I was completely alone again for another hour, still no IV fluids for my dehydration.

Eventually, the radiology technician came to take me for this test.  As she was getting me prepped, she announced that I was getting a different type of contrast solution because my kidney functions were so bad.  This came as a surprise to me!  Neither the doctor nor a nurse had thought to mention this to me, and they never did.  Again, I was wheeled back to the room and left completely and totally alone. 

Another hour or so passed and the nurse came in and finally hooked up the IV fluids.  At this point, my chest was really hurting.  In fact, it was hurting so much that I was in tears.  I told the nurse that I was having a lot of pain.  Now, mind you, I had just been taken down for a CT scan due to chest pain, but the nurse looked at me and told me that I had never mentioned chest pain!  I just stared at him, and as politely as possible, corrected him.  Eventually, I was given pain medication, which didn't help and I told another nurse that it wasn't helping.  I could tell that she didn't really believe me, but she said that she would tell the doctor. 

By this point, it was 5 or 6 a.m., and the pain was even more intense.  I pressed the call button and told them that I was still having a great deal of pain.  Eventually, they came back and I could tell the nurse was irritated.  He hooked up a second bag of IV fluids and gave me another injection for pain, plus an injection of atavan.  There was no explanation for why I was given atavan.  This nurse left, and no one came back for another couple of hours!  Finally, the doctor returned and in a perfunctory manner, told me that nothing showed up on the CT scan.  I told her that I was still hurting, and she proceeded to tell me that costochodritis didn't hurt that bad.  I was not in a good mood at that point, to say the least and asked her if she had ever had it.  She told me that she hadn't, and I told her that she could tell me how bad it hurt once she had.

She walked out the door, and I never saw her again.  A few minutes later, a new nurse came in the room, gave me two more injections, one for pain and another of atavan.  This nurse proceeded to tell me that my chest pain was all my fault for getting myself "all worked up".  As soon as I had been given the injections, he proceeded to unhook the IV and he handed me my discharge papers.  I had a prescription for an antibiotic and that was it.  No one told me what it was for, or why I needed it.  And no one, with the exception of a radiology technician, explained my kidney functions being off.  I was unceremoniously shown the door.

A couple days later, I finally picked up the paperwork to see what it said.  Apparently, the reason they gave me the antibiotic was for a severe case of cystitis, along with the costochondritis.  And on the last page, it stated that I had experienced a panic attack and that I should continue to take my anxiety medication.  I don't take anxiety medication!  I don't have a problem with anxiety, as a general rule.  However, if anyone deserved to be anxious, I think I did. 

No one should be treated the way I was in a hospital.  I realize they were busy, and I didn't expect for anyone to sit and hold my hand.  However, would it have hurt for someone to just stick their head in the door and tell me that they hadn't forgotten about me?  Would it have hurt to tell me that they were sorry that I was in pain?  Would it have hurt for them to explain what was going on?  And why was I never told what was wrong with me, or what the prescription was for?  There really is no excuse for making someone feel worse than they already did.  I still don't know why my kidneys aren't functioning correctly, but to be honest, I will have to be on my death bed before I return to that ER.

Sunday, September 29, 2013

Chronic Pain: A Thief in The Night

(Before I start, I would like to thank Mr. Leroy Moses for the inspiration for this piece)


Chronic pain comes upon us like a thief, ready to steal away so many things that we hold dear.  For some of us, it sneaks up on us, taking a little here, a little there.  We don't notice the losses at first because they are so small.  And then one morning, we wake up to a new ache or pain, and we attribute it to sleeping wrong, working out a bit too vigorously, or just getting older.  We think that small pain will go away in short order, and just consider it an annoyance.  And then, that pain continues to grow.  It constantly reminds us that it is present and that it isn't going anywhere.

For others, chronic pain bursts in on us like a home invader.  The pain comes on us suddenly and violently.  We are totally unprepared for what is happening.  It could be caused by a car accident, a work injury, an attack of some sort.  No matter how it comes upon you, there is no way that you can be prepared for what has happened to you.  The pain is intense and unrelenting.  You believe, however that the doctor's and others working to help you will eventually take the pain away.  You do exactly as you are told, and slowly, you begin to realize that your pain isn't going away; you aren't getting any better.  The pain isn't going anywhere.

And that is just the beginning of the theft of chronic pain.  It doesn't just take away your feeling of comfort - it steals away the most important things in your life.  Chronic pain takes and takes, no matter what you do to stop it.  I know, because I live with pain on a daily basis.  Chronic pain stole into my life when I bent over to pick up a piece of paper, and my life hasn't been the same since that day.  Before my pain began, I had a husband and three little boys that I dearly loved, a job that I actually enjoyed getting up and going to everyday, friends; in short, I had a life.  I got up every morning, took a shower, fixed my hair and makeup and went to work.  I didn't think about doing these things, because they were simply part of my routine.  How I miss that routine today.

Chronic pain stole the obvious things from me.  I had to leave my job because I was no longer able to sit at a desk for eight hours a day.  The pain would be so intense that I would have to leave work early.  After a time, I was no longer a valuable employee, I was a liability.  And the job that I loved was taken away from me by that insidious thief.  I miss my job.  I miss the people that I worked with.  I miss feeling like I was contributing something to my community, and to my family.  I miss the social interaction with my coworkers.  And I feel robbed.

My children were little boys when chronic pain came into my life.  They were just starting school, making friends, starting to play sports.  I loved being able to rough house with them, or sit on the floor and play games.  I couldn't wait to get home from work to see them because I adored every inch of all three of them, and I still do.  When I first injured my back, I had to explain that Mommy couldn't play with them, but that I would get better soon and we would sit on the floor and play whatever game it was once I was well.  Weeks and months, and even years, passed.  And still the chronic pain remains.

My boys grew up.  I never got back on the floor with them again.  Chronic pain stole so much, not only from me, but from my family as well.  I missed ballgames because I knew that I couldn't sit in the hard bleachers.  It stole vacations we might have taken because I couldn't stand the long car rides, or walk through theme parks and the like.  And my beautiful boys would look at me and tell me they  understood.  When they weren't around, I would cry for this loss which they didn't deserve, but accepted as the way things simply were.

I am not the same woman that I was before pain became my constant companion.  Before I became a pain warrior, I had been a singer.  I studied music all the way through college, and I was good.  I could sing a Broadway show stopper or an aria in Italian.  I loved to perform, and I did every chance I got.  Once I got older, I loved to go to a bar that had karaoke, and get up on the stage and sing my heart out.  That part of my life is gone.  Pain has stolen my ability to perform.  My voice is still there, but pain makes going out too difficult.  I so miss the joy I got from this part of my life.

I am not alone in feeling the sting of theft from chronic pain.  Each of us living with this condition know what it is like to lose the things that we hold dear.  Some lose the ability to participate in a sport that they love.  Some are no longer able to take care of their daily needs.  Like me, many are no longer able to work.  Most of us can no longer walk for any distance.  We lose joy in small things like going shopping, going out to dinner with friends.  We can't attend concerts, or movies, or church.  We lose friends.  We lose confidence in ourselves.  And, saddest of all, chronic pain steals our hope.  Eventually, we stop hoping that friends will call again.  We stop hoping that we will be healed.  We stop hoping that things will go back to normal.

Yes, chronic pain is a thief, which steals so much from each life that it touches.  However, we have the choice to simply sit there and watch it take all we hold dear.  We can become the victims of pain, and wallow in the loss of hope that we feel, or we can choose to fight.  We can truly become pain warriors.  There are many things that chronic pain steals from us that we will never get back and we mourn those things.  But we don't have to allow it to take our spirit.  We can learn to love the person that we are now.  We still matter!  We are stronger than we give ourselves credit for.  How do I know this?  I'm still here, and I am still fighting the thief of chronic pain.

Thoughts on Not Sleeping

It is 2:51 a.m., and I am sitting in my recliner.  There is some stupid movie on the TV, which I'm not watching, but have on simply for the noise.  With the exception of this stupid movie, my house is quiet because everyone is sleeping.  I actually went to bed several hours ago.  I was so tired, and I was looking forward to lying down in my bed, pulling my comforter over me, and going straight to sleep.  This is something that I fantasize about quite often.  And, unfortunately, that's all it is anymore - a fantasy!  I have quit sleeping.  Oh, I catnap, but I never sleep more than a couple hours at a time, except on very rare occasions.  Tonight, I managed a whole 45 minutes!

The sad fact is that I'm not alone.  Those of us who suffer from chronic pain are prone to sleep disturbances.  I would love to quote facts and figures for you, but I'm too tired right now to look for them.  I'm not even worried about the number of pain patients who aren't sleeping.  I know they aren't sleeping because we talk about it.  We compare notes in the middle of the night in support groups that we belong to.  And this lack of sleep, combined with the pain we feel all the time, creates a vicious circle.  We can't sleep because we're in pain; the stress and anxiety from the lack of sleep makes the pain worse; the worsening pain makes it impossible to sleep.

I have gotten to the point that I sleep when I can.  If I feel tired in the middle of the day and I don't have anything that I absolutely have to do, I will crawl in the bed and take a nap.  Quite frequently, if I sit down and get still for any length of time, I am unable to stay awake, no matter what I do.  None of these naps lasts for very long, but if I didn't take my little naps, I wouldn't be able to function at all.  And for those of you who think that my naps are the things that keep me awake at night, think again.  It doesn't seem to matter if I nap or not.  I can still only sleep a couple of hours at a time.

This constant lack of sleep is having a profound effect on me.  I never feel rested, which in turn makes me very cranky.  If you asked my husband and children, they might tell you that I can be downright mean at times.  I don't mean to be, it just seems to happen.  I also know that I can be a lot more emotional.  Many times, I will burst into tears for no apparent reason over the dumbest things.  I can also feel paranoid, depressed, and mad at the world.  You try living on 14-20 hours of sleep for weeks on end, and tell me you aren't mad at the world, too!

Sitting here, I feel tired.  I feel a kind of mind-numbing tired, but I don't feel sleepy.  There is a difference between tired and sleepy.  I would give anything to feel sleepy right now.  If I was sleepy, I think that getting in my bed and lying down would be easy.  I don't think that I would have to lie there long before I actually drifted off.  But, since I'm just tired, I am avoiding my bed at that moment.  Why?  Because all I do is toss and turn, which makes me hurt more, and makes sleep seem even that much further away.  So I sit here.  And to keep my mind occupied, I write a rambling piece about how I can't sleep.

Friday, September 27, 2013

A Bit of My Story

I have been living with chronic pain for the last twelve years.  As some of you know, I bent over to pick up a piece of paper, and the next thing I knew, I was experiencing the most soul-numbing back pain known to mankind, in my humble opinion.  From that moment on, I have not known a pain free day.  The day after it happened, I saw my doctor, who sent me to a neurosurgeon because he thought that I had herniated a disk.  That wasn't the case, and I was told that it wasn't surgical at that point.  I was then sent to physical therapy, which didn't help at all.  The only thing that did help for a few hours was the electric stimulation and the hot packs.  My next trip was to a pain management doctor.  He gave me epidural injections, which didn't seem to do much of anything, either.

Eventually, I saw another neurosurgeon who told me that in his opinion, my condition had become surgical, and that it was severe at that point.  He told me that I needed two surgeries - one to decompress my spinal cord and one to fuse a portion of my spine.  He would handle the first part of the surgery, and an orthopedic surgeon would handle the second part, and they would do it during the same procedure.  To be honest, I was told that there was a chance that it wouldn't relieve my pain, but at that point I was desperate.  I would have done just about anything to stop the pain that I had lived with for the last two years. 

Immediately following the procedure, I did get some relief.  For about the first six months, I was almost back to normal, and then the pain began to return.  The orthopedic surgeon kept telling me that it wasn't his fault, and the neurosurgeon left all of the follow-up to him.  Eventually, I was referred back to pain management and diagnosed with failed back surgery syndrome and chronic pain.  I started in with epidural injections again, which still didn't help.  Eventually, I started to have pain throughout my entire body.  My muscles ached so badly and nothing seemed to relieve the pain; even my skin hurt and I couldn't stand to have anything touch me.  In time, I was diagnosed with fibromyalgia.

And so, for the last twelve years, I have been in pain for just about every single day.  I am not the same person that I used to be.  I live under a veil of sadness that I used to not experience - there is sadness that I am not the mother and wife I want to be; sadness for the career that I lost; sadness for the inability to do many of the things I want to do.  I want to be the person I was, but I fear that she is gone forever, and I have had to mourn the loss of her.  I have also had to mourn the loss of the life I wanted to live.

Instead of being able to progress further in a job that I loved, I had to leave that job because I was no longer able to sit at a desk for eight hours.  Instead of being able to go to my son's football and basketball games, I was at home trying to find a position that didn't leave me crying from pain.  Instead of taking my kids to the movies, I would rent something for them, and then go into the bedroom and pray that they couldn't her me sobbing from that unrelenting pain.

Recently, my middle son started college, and I was so looking forward to taking him to school, helping him put his dorm room together, and starting him off on this next chapter of his life.  In the back of my mind, I knew that it would be a challenge for me, but I kept telling myself that I could handle it.  I completely miscalculated!  By the time I reached the car to leave that day, I was in a kind of pain that I didn't think would ever come to an end.  It took me over a week to be able to function again.  A normal person wouldn't experience something like this!  I want to be a normal person again!

Believe it or not, one of the few bright spots that I have found is Facebook.  I have gotten to know others suffering with the same things that I suffer with.  I have friends who actually understand what I am going through.  I am able to get and give support to people who get it, and that is such an amazing blessing.  It makes me feel almost normal again!  I have met people who understand me and are willing to listen when I need to talk about the pain that I am in.  I don't feel like I am annoying them and I don't feel like I have to smile and say I'm fine.  You know who you are, and I am so blessed to have you in my life.

Sunday, September 22, 2013

Pain Warriors

We all know pain when we feel it.  Stub your toe in the middle of the night, and trust me, you know pain!  As children, we skinned out knees and maybe even broke a bone and we knew what pain felt like.  Each and everyone of us has felt physical pain at some point in our lives.  At the time, we think that nothing could possibly hurt quite as much, and we may have even thought that no one else had ever experienced anything quite as bad.  If the problem is severe enough, we will go to the doctor or to the emergency room to be treated.  Within a few days, or sometimes weeks, we are back to our old selves - the pain a distant memory.

For those of us who suffer with chronic pain, this, unfortunately is not the case.  Our pain does not go away after a few days, or weeks, or even years, in many cases.  Most of the time, we know the causes for the pain that we feel day in and day out.  Perhaps we have back problems which required surgery and it didn't solve the problem.  Many with arthritis, both RA and OA, experience devastating daily pain.  We feel the deep tissue ache that comes with fibromyalgia.  Some, however, have no explanation as to the source and cause to the pain they are experiencing, and most doctor's are at a loss as to how to treat them.  And when a cause can't be found, many are told it's all in their head or they are simply trying to get drugs.  It is devastating to the sufferer.

Most of us who battle chronic pain on a daily basis face ridicule, rejection, and disbelief more than once along the way.  Friends and family may turn on us, not understanding why the pain doesn't go away.  They tell us we've changed and that we aren't the same person.  No, we aren't the same person.  Many days, it takes every ounce of energy we have just to walk from the bedroom to the bathroom.  We don't have anything left to entertain you with.  On other days, when the pain maybe a little more under control, they will tell us that they don't understand why we couldn't get out of bed yesterday, and yet we can to the store today.  The truth is, we don't understand it either!  We simply do what our bodies allow us to do when they allow us to do it.

Those of us with chronic pain refer to ourselves as pain warriors.  We fight every single day to overcome our limitations.  We often push ourselves to keep working long after the pain can leave us curled up in a ball at the end of the day.  We push ourselves to go to our children's sporting and school events, despite that the fact that sitting on hard bleachers,, often in the cold or heat, will put us in the bed for the next several days. We fight to try and keep our family's life as normal as possible, even though there are days when we wonder how we are going brush our teeth, much less do laundry and cook dinner.  But push on we do, because we aren't quitters!

I have come to know so many people who are living with chronic pain, and every day I am amazed at the strength they show in the face of the scourge of this debilitating condition.  I see people facing life, and the future with hope, despite the pain that they feel every single day.  I see people finding the courage to stand up for themselves when faced with ridicule about their condition.  And I see people willing to give love and support to another who is going through the same thing.  They give their time, their experience, and their heart to one another.  And while I wish that no one had to wear the mantle of pain warrior, I couldn't be more proud to stand up with and for the amazing men and women I know who are fighting this battle.

Saturday, September 14, 2013

My Birthday Wish

Wednesday will be my 51st birthday, and while it's still a few days away, I thought that I would go ahead and blow out the candles on my cake and make a wish for the coming year.  To be honest, I do have more than one wish, and since these are make believe candles, I'm going to be generous and give myself more than one wish this year!  Once you're over 50, I think you kind of deserve more than one wish on your birthday!

The first thing that I am going to wish for is sleep.  I am talking about deep, restorative sleep.  I want the kind of sleep that, when you wake in the morning, you know that you've been sleeping, and you feel refreshed and ready to face the day.  I can't tell you the last time that I had that kind of sleep.  Due to my chronic pain issues, and a natural tendency toward insomnia, I rarely sleep more than 3 or 4 hours a night, and many nights I don't sleep at all.  Last night, I managed one hour of sleep - from 5:00 this morning until 6:00.  Needless to say, I don't feel refreshed.

Insomnia, and other sleep issues are very common among those with chronic pain issues.  According to an article in Science Daily, 80% of people with chronic pain suffer from sleep disturbances.  Those disturbances range from difficulty falling asleep, difficulty staying asleep, and full on insomnia.  Needless to say, there are a lot of people out there who are worn out.  And this creates a vicious cycle; you are in pain and you can't sleep, and then your lack of sleep causes your pain to increase.  We need some sort of resolution to this issue.

My next birthday wish is for the war on chronic pain patients to stop.  Congress, the FDA, the DEA, and various other entities have basically declared open season on those who suffer from chronic pain issues.  Now, you will hear them say that this is not the case.  You will hear them say that the changes they want to enact are designed to address the issue of drug addicts abusing the system.  But the truth of the matter is that it is the chronic pain patients who are suffering for the changes being enacted.  Doctor's are refusing to treat patients with pain issues, and the ones who are still treating pain patients are severely limiting the treatment they do provide out of fear of losing their licenses to practice medicine.

The truth is that it is not the chronic pain patients who are abusing opioids or the system.  Chronic pain patients are not looking for a high; we are looking for relief of our pain.  We are not out there doctor shopping.  We are simply looking for a doctor with whom we can get along, and who will help us in our quest to live as close to normal a life as possible.  The people who are abusing the system are the drug addicts, and even if those seeking to tighten the noose on pain killers succeed, the drug addicts will simply get there drugs on the street.  It is the chronic pain patient, who is trying to do things the right way who will truly suffer.

My final birthday wish is for not only just myself, but also for my brothers and sisters who also suffer from chronic pain issues.  I wish that we each gain compassion and understanding.  I wish that people stop seeing us as lazy, drug addicted drains on society, and that they recognize us as people who are suffering from an invisible illness.  I wish that people would realize that this is not the life that we have chosen, and would much rather live without pain.  I wish that each one of us was simply normal.

Sunday, September 1, 2013

My Crazy, Busy Life!

The last couple of weeks has just been non-stop for me.  Staying busy like this keeps my mind off of my pain for awhile, but eventually, it rears its ugly head once again and lets me know that chronic really does mean CHRONIC!  Today, my body decided to remind me that everything still hurts and that there is very little I can do about it.  I can almost hear the pain gremlins laughing at me.  It's like they are telling me that they are in control and I am at their mercy.  It really makes me angry sometimes.

So what have I been up to for the last couple of weeks?  The biggie was taking Matt to college for the first time.  He is a freshman at the University of Louisville this year, majoring in biochemistry, with plans to go to medical school.  I am so proud of him!  The walking just about did me in when we moved him in, although Matt and Jack both said they were amazed at how well I handled it.  Jack figures that we probably walked a little over a mile that day.  By the time we got home, I was in tears from the pain, but I survived, and that is something, in my book!

I haven't been able to take any time off to just sit and let my body recuperate.  There have been so many errands that have to be done, and since Dale can't drive anymore, it has fallen to me to take care of everything.  Running to the store, taking Jack to his different activities, doctor's appointments, you name it, I've done it.  Most "normal" people would simply say that's life, and wonder why it would be difficult for anyone.  But my fellow chronic pain sufferers know what I am talking about.

Jack had to have all four wisdom teeth pulled on Thursday, so I have also been wearing my Dr. Mom hat this week.  He hasn't had nearly as much pain as I thought that he would, but bless his heart, he looks like a chipmunk!  I have even taken to calling him Alvin every now and then!  The hardest part for Jack has been the liquid diet.  The poor child is convinced that he is starving to death. I finally convinced him that he could eat canned ravioli, and oatmeal, and that seemed to fill him up a lot better than jello and soup.  Yesterday, he even at a few bites of chicken nugget!  I think he's going to survive!

I think everything finally caught up with me yesterday.  Every time I sat down and got quiet, I fell asleep.  I slept off and on all day yesterday!  In fact, last night I fell asleep sitting up. I woke up at 8:30 this morning, still sitting up straight.  I could barely move because each and every muscle was so stiff.  I did manage to lie down and I slept a couple more hours.  As of right now, I'm still hurting!

Lastly, I have to brag on myself.  I have smoked for 30 years, and I haven't been able to quit.  The truth of the matter is that I really like smoking.  I know that I need to quit, but the thought of the withdrawals honestly kept me from trying very hard.  But, the time has finally come that I am getting serious about quitting.  I had previously tried an electronic cigarette with the cartridges, but it was a waste of time and money.  I didn't like it at all, and within a couple of days, I was back to smoking again.

One of the pawn shops in town has been advertising a different type of electronic cigarette, which uses a liquid nicotine and an atomizer instead of the cartridges.  I talked to a couple of people who have been using it, with great success.  Well, I bought one the other day!  You gradually decrease the strength of the nicotine that you put in it, until you aren't using any.  And I am happy to report that I haven't had a real cigarette in three days.  I know that isn't very long, but for me, it's impressive!

I hope that each of you remembers to take care of yourself, and that your pain levels are tolerable at this point.

Tuesday, August 13, 2013

Acceptance

For those of us who suffer from an invisible illness/disability such as chronic pain, fibromyalgia, lupus, or any of the myriad other conditions which are not readily visible, I believe the one thing we want above all is acceptance.  If I told you that I had cancer, you wouldn't tell me to suck it up.  If my leg had been amputated, you certainly wouldn't tell me that walking a mile a day would make me feel better.  You would accept my condition without question.  But because my disability isn't visible to the world, it is considered less than other disabilities.

Most of the time, I use a cane when I am out and about running errands.  While I don't always need it, I have found that my cane acts as a visible symbol of my disability.  I often have to use one of the motorized carts provided at the larger chain stores.  If I sit down on the cart and plunk my cane into the basket, no one looks twice at me.  However, if I haven't brought my cane for some reason, I have been subjected to dirty looks and rude comments.  People aren't readily willing to accept that some disabilities aren't in your face.

I have said this before, but it is difficult to understand chronic pain when you haven't experienced it yourself.  That being said, I have never had cancer, but I am empathetic to those who have.  I have sympathy for the sufferer, and I would do anything within my power to make things easier for them.  I would accept the things they are going through without judgement.  This is what we want for ourselves.

To be honest with you I am tired of smiling and nodding at people when they tell me that their Aunt Mildred had fibromyalgia, and she ate nothing but black beans for the rest of her life and it cured her.  What I would really like to say is that you're Aunt Mildred must have had terrible flatulence, and I would rather hurt, but thank you for your concern.  Sometimes, I get tired of being nice.

I believe that we all have a duty to educate those around us about these invisible conditions.  Of course, there are those around who will not believe what we have to say, no matter how much proof we can hand them.  It is very frustrating to be constantly belittled and ignored, but we can't quit.  Like the old saying says, the squeaky wheel gets the grease, and the more we squeak, eventually someone is going to listen.

If nothing else, I would like to see a return to common courtesy.  If you see someone struggling to carry something, offer to help them.  If you see someone in a wheelchair having trouble opening a door, offer to help them.  If you notice someone who seems sad or depressed or stressed, just offer them a kind word and a smile.  If we want others to be accepting of us, we must be accepting of those around us.

Monday, August 12, 2013

The Passage of Time

As we get older, I think it is normal that we begin to contemplate the passage of time.  I will turn 51 in a little over a month, and for the first time, I am actually beginning to feel my age emotionally.  Because of my health issues, I have felt my age physically for quite a while.  However, mentally and emotionally, I have never felt that old.  I still listen to rock music and I can openly talk to my sons about everything. In fact, one of my dearest friends in the entire world is in her twenties, and the age difference just doesn't exist between the two of us.

However, I am starting to feel my age, and I think the primary reason for this is the fact that my children are growing up.  My oldest son will soon be twenty one.  Chris has a job and his own apartment, and he tells me that he has met a girl who makes him think about settling down and actually growing up.  I think to myself that he is far too young to be thinking along these lines, however, I was engaged to my first husband when I was his age.  I would like to think that I could help him to learn from my experience, but sometimes, we have to let go and let out children make their own mistakes, as well as experience their own successes.

Also, in a little over a week, I will be taking my middle son to college for the first time.  I am so proud of him, and I am excited for him to begin this next chapter of his life.  Matt is incredibly smart and will be majoring in chemistry, with plans to attend medical school.  Because of his hard work in high school, he will be a sophomore before evening completing his first year of college.  And, as happy as I am for him, this is a very bittersweet time for me.  I'm mentally not ready to let him go.  This is my issue to deal with, and I will not let him know that this is how I feel. 

My baby is growing up, too, and there is nothing I can do to stop it, not that I would.  My little boy is 16 years old now, and has his driver's permit.  After teaching his two older brothers to drive, it isn't too stressful, but it is hard to believe that this little boy is already old enough to be driving.  Jack is a junior in high school, and I am already feeling the pull of his leaving home as well.  Granted, he has two years of high school left, but by the time they are a junior, they are leaning towards their own future.

Soon, it will just be my husband, two cats, one dog, and me.  The thought of Dale and I being alone frightens me quite a bit.  As most of you know, because of my husband's disability, he is very limited in the things he can do.  All of the chores that involve leaving the house fall to me.  If Dale has a doctor's appointment, lifting his wheelchair into and out of the car falls to me.  If one of the boys is home, they will handle this for me, but soon, there won't be a boy to call on for help.  I am certainly not getting younger and I my body continues to betray me.

I do believe in the power of prayer, and I have seen how well it works.  And because of this I pray everyday for my family, my friends, and myself.  I believe that the answers will come, and that we will be fine in the future.  Now I just have to learn to accept the fact that I am getting older and life is going to change.  And I know in my heart that the changes will be wonderful!

Tuesday, August 6, 2013

Insights into my Depression

Looking inward is rarely an easy thing to do.  If you are anything like me, there is always a fear that you will find things within yourself that you would rather not face; things within yourself that you know you will you not like about yourself.  That being said, I have felt a compulsion to look into those dark recesses to try and determine what is going on with me right now.  There are things that I don't like, and there are things that I feel helpless to repair.

The first thing that I find is that I am carrying around a lot of resentment right now.  I don't like that feel this way, but at the moment, I feel helpless to let go of this resentment.  As most of you know, my husband and I are both disabled.  His disability has left him confined to a wheelchair, and it is a progressive disease with no cure.  He does what he can to help out around the house, and I will say that he does a lot.  He has days when he is unable to do anything, and I understand that and try not to hold it against him.  If you notice, I said that I TRY not to hold it against him.  Unfortunately, I am not always successful in that, hence the resentment.

Because of  my fibro, and the problems with my back, there are days when I deal with excruciating pain.  There are days when the only thing I feel like doing is lying in my bed or huddling in my recliner, praying that the pain will soon pass.  Sometimes, the pain lingers for days and weeks, with little or no relief, despite what I do.  According to my doctors, and the Social Security Administration, I am completely disabled, to the point that working isn't a possibility for me.  But to look at me, you wouldn't know that I am disabled.  My disability is invisible.  Despite this fact, I have no choice but to keep going, irregardless of how bad I feel.

My husband is no longer able to drive.  Because of this, all of the errand running falls on my shoulders.  Granted, my son Matt has his drivers license now, and he will run some errands for me.  The mother in me, however, feels guilty about expecting him to do things for me.  He is an 18 year old boy, experiencing his last summer before college.  Matt has a lovely girlfriend and friends that he wants to hang out with before leaving for school in a couple of weeks.  I don't want to take that time away from him by expecting him to handle my business for me.  And so, I try to limit the things he does for me.

I shouldn't resent doing these things for my family.  I feel guilty when I do finally say I can't do anything else.  I feel guilty when I look at Matt and ask him to go to the grocery story for me, or take Jack to work.  I feel guilty when I have to look at one of my boys and tell them that they can't do something because I don't know how I will get down the back steps to the car, and back up the steps when I get home.  I feel guilty when I tell the boys to eat a sandwich for dinner, instead of cooking a meal for them.  I also resent all of them when they seem not to care how badly I am hurting when they want me to do something for them.

I wish that I had the answers to make this resentment just go away.  I wish that I didn't feel this way.  I wish that I had never developed fibro and crippling back problems.  I wish that I could be the mother that I always dreamed of being.  But, there is an old saying that goes, "If wishes were horses, then beggars might ride."  My wishes do me no good, because I see no way of changing the situation that I am in.  Hence, the resentment and guilt that I live with every single day. 

Sunday, August 4, 2013

I'm Sorry it's Been So Long

To those of you who have been faithful, long time readers of my little blog, I owe you an apology.  It has been such a long time since I've written anything, and I don't really have a good excuse for letting something that has meant so much to me, and hopefully to you, fall by the wayside.  I can try to explain by saying that things have been very busy, but that excuse doesn't really work.  Things have been busy in my life before, and I still found time to write.  I can say that I haven't felt well enough to write, but that doesn't work either,  because even when I have felt worse than this, I have found time to write.  I could also say that my insomnia has made writing difficult, but once again, it doesn't work, because my insomnia is no worse than it has been since I was 10 years old and first developed it.

I guess the best reason that I can offer for not writing is depression.  Lately, I have felt a deep depression that hasn't let up.  There is no real reason for it, but then those of you who suffer from clinical depression know that there is rarely a reason for falling into the black hole of depression.  I just have felt that nothing I had to say would be worth reading, even though, logically, I knew that people enjoyed reading the things that I have written in the past.  Unfortunately, logic and depression rarely walk hand in hand with one another.

I know that I need to talk to my doctor about prescribing me an antidepressant again.  I have never been ashamed about the fact that I suffer from depression.  It runs in my family like blue eyes or brown hair.  But for some reason that I don't understand, I haven't wanted to admit to anyone that the black hole had crept up on me again.  I have always told others that depression is no different from any other physical ailment.  I think the term "mental illness" is so misleading, considering the fact that depression, like other illnesses, springs from a physical cause.  I have a brain chemistry that just doesn't work.  And I know from experience that medication helps to realign that chemistry so that I don't suffer from the effects.  So why haven't I just told my doctor that I need help right now?

Unfortunately, I don't have the answer to that question right now.  I suppose that the depression itself may hold the answer.  However, the next time that I see my doctor, I am going to be honest with both him and myself, and ask for help.  I'm not being fair to myself by not seeking help for something that can be so easily treated.  There is no shame in asking for help when you truly need it.  I have told this to many people, and it is time that I take my own advice.  That being said, I also promise to be more diligent in writing again.  I got so much out of writing my blog, probably more than I gave to others, so I am going to make a concerted effort to keep up with it again.  For those of you who have been faithful readers, I hope that you will once again join my on my journey.

Wednesday, March 20, 2013

All I Want is Eight Straight Hours of Sleep!

As the title says, I would give just about anything for eight straight, uninterrupted hours of sleep.  I'm talking about that deep, restful sleep that you wake up from, ready to take on anything life has to throw at you.  I can't remember the last time I had that kind of sleep.  In fact, I can't remember the last time I had eight straight hours of bad sleep, to be honest with you!  Sleep is one of the things that fibro, and chronic pain, has stolen from me, and it is one of the things I miss the most.  I am exhausted all the time.  And no, exhausted isn't an exaggeration!

I have always had problems with sleep.  I experienced my first bout of insomnia at the ripe old age of ten.  I can remember lying in my bed, crying, because I was so very tired and couldn't fall asleep no matter what I did.  However, when you are ten, you seem to bounce back from things like that pretty quickly.  And the insomnia wasn't a constant thing.  Every three of four months, I would experience insomnia.  I would have a couple of sleepless nights and then things would go back to normal.  I learned how to deal with the occasional sleepless night.

My real problems with sleep started with when I was forty and first started having problems with my back.  Pain would have me lying awake for what seemed like days at a time.  The only time I would sleep would be right after my pain medication would kick in, and then I would be able to sleep for three or four hours at a time, but we all know that medicated sleep isn't good sleep.  I learned to function on less and less sleep, and I tried to convince myself that I really didn't need all that much sleep.  We all know that isn't true at all!

The effects of sleep deprivation are with me on a daily basis.  Not only am I tired all the time, I am frequently short tempered.  I snap at my husband and children over minor things.  I know I'm doing it, but I can't seem to stop myself.  I also experience an increase in the amount of depression that I deal with.  I can also feel the effects in a physical manor.  I have more headaches than I used to have and I can tell that my blood pressure is elevated after a long period of sleeplessness.  I can't find the energy to do the things that I know I need to do.  Simple things become almost impossible.  I can't think clearly, and I know that all of this is related to my lack of sleep.

And now, here we are ten years after having major back surgery which was supposed to "fix" me and didn't.  I am still dealing with chronic pain, and I still can't sleep!  I average about four hours of sleep a night.  Those four hours are rarely straight through, either.  I frequently wake up during the night; sometimes for a few minutes and other times for a few hours.  Many nights, I will lie there trying to talk myself into sleep, only to give up and get up after a couple of hours.  Some days, I am lucky enough to be able to take a nap, and other days I'm not.  And even though I am getting some sleep, it's still not the same as those blissful eight straight hours of sleep that I crave!

Tuesday, March 12, 2013

It Can Happen to You!

In April of 2012, the Commonwealth of Kentucky declared war of people suffering from chronic pain conditions.  It was at this time that the Kentucky state legislature passed House Bill 1.  The stated purpose of this piece of legislation is to crack down on the numerous "pill mill" operations which were operating in the Commonwealth at the time.  Unfortunately, despite claims to the contrary, the true victims of this bill are those of us who suffer from chronic pain conditions, and the legitimate doctor's who provide pain management treatment.

We can all agree that the "pill mills" were not providing a legitimate service to legitimate pain patients.  Many of these offices operated on a cash only basis, and they would provide prescriptions of heavy duty opiates to anyone who could tell a good story.  Most of the patrons of these types of operations were not legitimate pain patients, but individuals seeking drugs, whether for there own use of to sell to the many people using opiate medication simply as a means of getting high.  Kentucky does have one of the highest rates of drug abuse in the country, with an alarming number of drug overdoses, and deaths. 

Unfortunately, HB 1 did not stop at simply shutting down the "pill mills".  All doctors in Kentucky have come under suspicion for prescribing opiate pain medications.  This includes both family doctors and pain management specialists.  The number of prescriptions for opiates that a doctor writes per month is held up to scrutiny by the Commonwealth of Kentucky.  Because of this, many good doctor's are now refusing to treat patients who are living with chronic pain conditions.  These doctor's are in a constant state of fear at the prospect of losing their licenses, and in return, their livelihood.  It is much easier for many of these doctor's to simply stop prescribing opiates except in the most extreme cases.

The fallout doesn't stop with the doctor's, however.  It rains down upon the thousands of patients suffering from intractable chronic pain.  If a person can find a doctor willing to treat them, the pain patient is immediately looked on with suspicion.  A state report is generated on each individual patient.  This report, known as a KASPER report, shows every doctor the patient has seen and every prescription the patient has received.  Because this report is required, each patient is at once looked upon as a potential drug addict.  This immediately makes the trust required between physician and patient difficult to achieve at best.

I have personally fallen victim to this new law.  Prior to receiving my Medicare, I was treated at a free clinic in my town.  The clinic was staffed with volunteers, from the people answering the phone, to the doctor's providing treatment.  It was very rare to see the same doctor more than once.  When I initially started going to this clinic, they were providing pain management services to me since I had no insurance and was unable to see a pain management provider.  Each time I went, I would see a different doctor, who would continue to prescribe my medications.

Two years of this went by, until I finally received my Medicare and was able to find a private physician.  During the course of my search, I reinjured my back and made an appointment with a local doctor. This doctor spoke with me for a few minutes, and then excused himself from the exam room.  Several minutes later, her returned and I could tell from looking at him that he was angry.  For what seemed like an eternity, he berated me.  I was called a doctor shopper and a drug addict.  I knew immediately that he had run a KASPER report on me and was seeing all the different doctor's that I had seen, as well as the number of prescriptions for narcotics which I had received.  I tried to explain to him about having been a patient at our local clinic, but his mind was made up.  He informed me that he wasn't willing to risk his career on a drug addict like me.  I left the office in tears, and, needless to say, I never returned.

If you think that Kentucky is an isolated case, think again.  This most definitely can happen to you!  Many states have already enacted similar legislation, or are looking into making similar laws.  I am urging you to stay informed.  Keep abreast of the type of legislation your state government is trying to pass.  Contact your state senators and representatives and let them know how something like this would affect your medical care, as well as your quality of life.  Many chronic pain sufferers are bonding together in our state, trying to get this legislation amended in such a way that chronic pain patients are better protected from legislation like this.  It is most definitely an uphill battle, but we are making some headway.  Don't bury your head in the sand!  Stand up and shout as loudly as you can that you deserve to be treated with dignity and respect, and do it before it's too late.

Friday, March 8, 2013

Depression

Those of us suffering from a chronic pain condition deal with depression periodically.  Living with never-ending pain is enough to make anyone depressed.  We lose friendships over our conditions.  Our activities are often limited at best.  We frequently have difficulty finding doctors willing to treat us.  If your are anything like me, you probably feel very guilty about the things you can no longer do for your families.  We do the best that we can, but so often feel like it's never enough.  I'm going through one of those phases right now.

As many of you know, my husband was recently hospitalized for 3 weeks due to a flare up of his condition.  He's home now, and that's a good thing.  The problem is with me.  I am feeling so resentful towards him right now.  This isn't something I'm proud of, and if I could just flip a switch and make those feelings go away, I would.  Unfortunately, it just doesn't work that way.  He has lost more ground with this flare up.  He has in home therapists coming to see him, but he isn't working on it when they aren't here.  More and more is falling on my shoulders, and I can't refuse to do things, or they just won't get done.

The last week has been especially hard on me.  I have had to be on my feet, running errand after errand.  The boys have had things they have to do, and I have had to take them here, there, and everywhere.  I'm not sleeping well, I still don't have any pain medication, and I am absolutely miserable.  I don't have the option of looking at my husband and saying, "I don't feel like doing this.  You do it.".  Because of this, I feel myself slipping deeper into a depression.  Quite frankly, I am miserable right now.

Quite honestly, if I could find a big enough hole, I would crawl into it and pull the dirt over the top of it.  But again, this isn't an option.  I need a break, and there isn't anyone to give me that break.  Finances are difficult right now.  Dale's medication upon leaving the hospital cost around $350, which isn't in the budget, but he has to have the medicine.  I am at a loss for what to do right now.  I am honestly thinking that I am going to have to give up my disability and find a job, but I don't know if my body will allow that.  But something has to give, and I am the only one who is able to do the giving at this point.

I feel like a horrible person right now.  I can't do enough for anyone, and everyone needs something from me.  I want someone to take care of me for a change, but that isn't going to happen.  I really do try to stay as upbeat as possible, but right now, I just can't pull myself up.  Thank you, my friends, for letting me vent.

Saturday, February 2, 2013

A Rough Two Weeks

I have to tell you that the last two weeks have been really rough for me and my family.  As many of you know, my husband has a condition called spino-cerebellar ataxia..  This is a progressive disease, and when it does make a progression, Dale has an attack which looks and acts a great deal like a stroke.  When he has one of these attacks, I usually have to take him to the hospital.  About two weeks ago, Dale had another attack and I had to call an ambulance to take him to the hospital.  This one was worse than usual.  It wasn't long until we realized that Dale's left leg was paralyzed.

Our little hospital here in Bardstown doesn't have a neurology department, and they weren't equipped to treat his condition.  The emergency room doctor contacted Dale's neurologist, and he was transported to a hospital in Louisville.  After many tests, they confirmed that his disease was indeed progressing.  According to the doctor's, the paralysis in his leg was unrelated to his condition.  After another MRI, we were told that all the years of sitting in his wheelchair had severely pinched a nerve, and had caused the disks in his lower back to bulge and press upon his spinal cord.  They hoped that intense physical therapy would relieve the problem, and he was transferred to Frazier Rehab Hospital.

Dale has worked so hard at his therapy, and I couldn't be prouder of him.  They have actually been able to get him up on a walker and taking steps for the first time in many years.  The problem is that his leg is still paralyzed.  The doctor's and therapist's have said that they have basically done all that they can do and they will be sending him home on Wednesday of next week.  Once Dale gets home, he will be getting in-home physical and occupational therapy.  When I pick him up on Wednesday, we immediately leave the hospital and go to see a neurosurgeon.  They are hoping that surgery might restore the feeling and movement to his leg.

I'm excited that my husband is coming home from the hospital.  I'm not that good at being single!  Both of my boys have been away this weekend, and it was very nice the first night, but tonight, I'm feeling a little lonely and would love to have someone to talk to.  It's very quiet in my house at the moment!  So, I think we will have to have a celebration Wednesday night!  Now, as happy as I am that Dale is coming home, I'm also a little worried about it, too.  Dale is going to need more assistance than he has in the past, and I don't always know that I'm up to the job.  For example, his physical therapist told me that in order to get him up the steps to our house, I will need to support his body, while at the same time physically lifting his left leg up each step.  I honestly don't know if I am physically strong enough to this.  I can't depend on my sons being home each and every time Dale has to come into or leave the house.

I feel guilty about even worrying about things like this.  Right now, Dale needs me and I want to be there for him.  I want to do everything I can to take care of him, and I know that I will do what has to be done.  But what happens if I discover that I can't do all the things that need to be done?  What if I can't get him up the steps?  What do I do then?  I have to think about these things, and so far, I haven't come up with any options.  I suppose that this is one of those bridges that we will cross when we get to it.

In the meantime, please keep us in your prayers.  This has been a long and difficult road for us, and it is still stretching out before us for the foreseeable future.

Wednesday, January 23, 2013

An Apology

I want to apologize to those of you who have been faithful readers of my blog.  I am so sorry that it has been so long since I posted anything, but there have been some extenuating circumstances, which I want to briefly explain.  This post probably won't be very long, but it will let you know everything that I am dealing with currently.

Being one of those people that suffers from depression, especially around the holidays, it took me some time to just get over all of the stress.  My fibro has been flaring off and on for the last month, which hasn't been at all pleasant.  About the time that things started to look better, my husband became extremely ill.  One week ago, he had an attack from his condition.  By the time the ambulance arrived at the house, his speech was unintelligible, and he had lost all feeling and movement in his left leg.

The doctor in our little hospital here contacted Dale's neurologist, and it was decided that he would be transferred to one of the large hospitals in Louisville.  After two MRI's, they discovered a severely pinched nerve in Dale's back which is causing the paralysis in his left leg.  He has been transferred Frazier Rehab, which is a world class rehab hospital in Louisville.  Dale will probably be in this hospital for 2-3 weeks.  If they can't work the pinched nerve out with therapy, they will probably bring in a neurosurgeon to see if it can be fixed that way.  If they do decide to do surgery, it will mean an additional 2-3 weeks in the rehab hospital.

Currently, my youngest son is home sick with tonsillitis and an upper respiratory infection, so I am staying home with him right now.  Hopefully, he will start feeling better very soon.  I am in massive amounts of pain right now, but I will survive.  To top it off, we just got a new puppy.  Yesterday, we learned that some of his litter mates have developed parvo, and he is showing all the signs and symptoms.  We are trying to nurse him through it, but I'm terrified it is a losing battle.

So, as you can see, my plate is pretty full at the moment.  I promise that once things calm down a bit, I will be back to writing far more regularly.  Thank you for reading!