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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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