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.

 

 

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.

 

 

 

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.

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!

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.

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!

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.

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.