Five Years Later.

My Last post was nearly five years ago.  It’s shocking when I read it how much and how little has changed.  Yes the surgery did much to help my overall function in life.  It helped me to use my upper body again , for that I am thankful.   The surgeon thinks it was a failure because I didn’t walk again.  I think he’s a pork chop.  He was the only one that thought I would walk again, I’ve known since very young a day would come when I would sit down and never stand again.  It has only been recently that I’ve been able to admit that out loud. 

In that five years I have discovered many things.  Some of them medical , some of them personal. In these article I hope to examine them all in time.  First however I was diagnosed with Fibromyalgia about two years ago.  That at first made very little difference by my way of thinking.  Like most of the world I didn’t understand the disease for what it is.   My thought was , but what else is it?   Fibromyalgia doesn’t take away your ability to walk,  it doesn’t make you incapacitated for life.  Wrong.  That in the simplest terms is wrong.  In fact Fibro as I will refer to it frequently , because let’s face it Fibromyalgia is a long word to type, is a serious debilitating disease.   First although the medical community as a whole would like you to believe otherwise, it is not something new to the scene.  It was discovered as long ago as the early 1800’s .  A Scottish Doctor discovered that his patients were feeling pain when they shouldn’t.  He realized it was caused by some kind of disconnect in the nervous system even then.   What I am saying is even that long ago he didn’t say to his patients it’s all in your head rub some dirty on it you big baby.  He understood that it had something to do with the way the body responded to pain.  I will get into the history and facts more in the future.  For now I am telling you.  

Stop .  You Are Not Insane.  You Are Not Alone.  You Are Sick.  You Deserve To Be Heard. 

That being said how do you make that happen?  The long and the short of it , the hard truth of it is, you have to fight.  If you can not physically put that fight out then find someone on your side will to do it for you.  If the first Doctor you see rolls their eyes gives you an antidepressant and tells you        ” You know it’s probably just… X Y Z .”  Find another Doctor,  and another and so on until you find one with a brain in their heads and a soul in their hearts.  As a patient you have rights.  We all hear that every time we enter a medical building, but do you really know what that means to you?

Here are some that people usually aren’t aware of.  On top of your medical condition being private, which is important I agree.  On top of having the right to say no to any treatment, also incredibly important. Cornerstone really.  You have these rights.

  1.  The right to know what the Doctor is talking about. I know that sounds simple , but it isn’t.  It doesn’t just apply to not knowing the language.  If he doesn’t make sense tell him so.  Make him explain.  He made you wait he can make the next person wait too.
  2. The right to have your concerns heard.  It’s along the same lines.  You can’t be dismissed as being hysterical.  Yes, I had a Doctor note that I was a Hysterical Woman.  I had nothing wrong with me.
  3.  That goes to your next Right.  The right to fire your Doctor.   Even if you are on Public Assistance of some kind.  Be that Medicaid, Medicare or the like.  You are not a charity case.  That Doctor is getting paid by someone.  If they aren’t doing their job then they shouldn’t get paid.  You would fire your mechanic if your car didn’t run.  Isn’t this far more important?
  4. Most importantly and by far most overlooked in the medical community.  You have the right to be treated with dignity.   No matter your condition or social standing you are a Human Person.  A fellow member of the Human Family.  You have the right to be treated as if you belong here.

Now taking that all into mind you don’t always have a choice when you first find a doctor.  You do however after time with that doctor.  Once you have assessed them finding them unworthy move on.  You will come to one that is worthy though.  I myself had to move nearly two thousand miles from my home town to make that happen.  I don’t suggest being that radical.  It was a combination of life events that sent me packing.  What I found was a Doctor that not only understood my condition , but sympathized and empathized with me.  A rare find indeed.  There is hope don’t give up. 

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Getting A Diagnosis

I spent many years saying something was wrong.  My earliest memory on the subject I was perhaps ten.   I got blinding headaches, was stomach turning dizzy.  I’ve never slept normally.  My Mother tells me that started as a baby.  As a young person I learned to adjust.  It became a problem to hide from others when it became clear that no one believed me.  Off and on it got so bad it couldn’t be ignored.  Mom to her credit would try to get answers but there wasn’t much help for people that can’t pay for it.  

As I got older I would just ride out these episodes by saying I had a bug, or I was tired from working too hard.  That was easy to believe.  I worked with children and I did work too hard.  At around thirty I was ready to make someone hear me.  The problem being that they weren’t ready to hear me yet.

I was suffering from depression.   They medicated me for that and that was as far as they were willing to look.  If you can’t understand it deny it exists.  Good medicine? No.  Common?  Yes.   The first doctor I worked with treated me as if I was a overly emotional woman.  For years I didn’t go any further for the same reason my Mother hadn’t.  I didn’t have the means to make them listen.  

Over the last probably ten years it was impossible to ignore any longer.  It started with pain in my lumbar.  I couldn’t walk any distance without assistance.  A cane or crutch at first.  Even then it would come and go.  At times feeling almost ‘normal’.   I learned to deal with the pain or at least hide it.   Over the last five years it became increasingly harder to hide.   It was obvious to anyone observant enough to look.  The ataxia the jolting movement and chronic fatigue.  

As I had so many times before I went to my doctor .   The family history of M.S. weighed heavily on my mind.   My Father died from it, my Uncle did as well.  My little brother was diagnosed at less than thirty with it.  Cousins, Uncles ,Nieces and etc all with neurological issues.  Her answer to me was rest more, we’ll increase your anti-depressant.  I doubt it’s anything (Roll her eyes).   

I didn’t give in ,I wasn’t giving up again.  It progressed.  Now I can’t hide it.  The headaches, god the headaches were so bad I thought my head was cracking open.  I tried again.  Her answer?  You’ve complained about this before are you sure it’s not your depression?  THAT WAS THE FINAL AHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!

I’ve complained of it before therefore it isn’t a problem?  WHAT?  I admit yes I was depressed.  Feeling like your body has mutinied on you will  make you depressed.  Being in screaming pain and having people behave as if you are lying will make you depressed. I can’t stand for long without pain.  My legs got weaker, my back twisted with pain ,I couldn’t feel my feet but they always hurt. My joints felt like they were breaking. I told my doctor these things one last time her answer?  I wouldn’t worry about it.  My left arm is numb and I can’t use my fingers.  I wouldn’t worry about it. Shake your hand until the numbness passes.    Then the final event the defining moment.

I was in so much pain that Mom had to rush me to the e.r. Not once, not twice several times.   They did x-rays, ctscans , M.R.I.’s.  No answer but it was clear now I wasn’t insane I wasn’t playing for sympathy.  I was in trouble.  Something very frightening was happening.  The e.r. doctors were at a loss to explain but they didn’t dismiss me.  I went to two doctors they referred me to.  

One a neurologist, one a internist a resident.  The first the neurologist said yes it’s neurological. She was intelligent enough to admit she couldn’t answer the question of Why?.  The second told me I was lying for narcotics and he could refer me to Adams Co mental health.  I managed to leave without ripping his head off.  I was sitting there in a wheel chair in pain that the narcotics didn’t even touch and he was using the party line.  ( It’s All In Your Head)

Turns out he was wrong in more than one way. I wasn’t faking, I don’t take narcotics now and it wasn’t in my head.   The neurologist helped me get Medicaid, then she helped me get answers. Suddenly they were interested because they could get paid.   She referred me to a neurosurgeon.  He sat down with me and thinking I knew what was happening.  He explained a surgery that he said would help with some of the problems.  I was dumbstruck.  I left the appointment with a dear friend too shocked to speak.  No one had even given me a diagnosis.    Two weeks later Mom and I met with him again.  

Now he was aware that I was totally uninformed.  He explained with extreme patience.  I have a congenital defect of the spine.  Surgery would help some of the pain and a few of the issues .  It was enough to be worth it.  By then the numbness in my arm that I shouldn’t worry about was full blown paralysis. My left arm would no longer move.  My left leg might as well have been gone.  

I wish I could say the surgery made me whole.  I wish I could tell you it’s all better now and I got on with my life.  The truth is I am a paraplegic.  The good news if there is some is both my arms function now.  I can use a wheelchair rather than a electric scooter.  The pain while still with me at times is usually manageable.   It’s not the end of the story, or even the end of the medical fight.  It’s a good start.  I have some answers.  Best of all being that I can say with all sincerity that it’s not in my head.