Pain and suffering

I do have disabilities, and wanted to be more upfront and say something @ the people who don't understand to what we are going through. If only they could step in our shoes for just a little while, they would feel the pain.
We are the ones who have pain in life and aren't even responsible for it, but are trying to deal with it,make it better, and seem to be getting nowhere at times..but sometimes there is another reason(answer at the end of post).
Me?I am in excruciating pain and that leads to near insanity. Everyday, I suffer in misery and can't sleep. People are so judgemental and don't understand the complexities of the disabilities that demand so much of us. We strive to have normal days where we can spend that quality time with our kids(to just be able to take them fishing or to set through a complete baseball game)..laugh with our friends..do things for others that make us feel whole. It is so difficult when you don't know exactly what is happening to you and all you want is to be able to be in the norm of the things of this life. People take for granted the luxury of being able to just do that. They take for granted who you are now and not seeing the whole picture of who you used to be..the one who could do any and everything or though it seemed.
To you, it's like your in someone else's body that feels so alienated now..devastated. You have to learn all over again how to compensate your life to where you can feel somewhat like who you were or used to be. You feel like you are learning to crawl and walk all over again and it doesn't help when someone else comes along and says on top of everything "that you are just using the system and government to just lay around all day and do nothing!" People have actually said that to me..how rude when they don't have a clue to what you are going through!! Never let anyone make you feel that you don't deserve or have that right, when you are in fact disabled NOW and can't help where you are in life. You didn't ask for the way you feel or why you can't do anything anymore, like you used to. When you have been cut on and left to fend for yourself...to find an answer to why it is the way it is... it can be really devastating.
The doctor who done my surgery on my ruptured petrusion C5C6(it's called an ACD & F Spinal fusion),failed to tell me that I had a T3-T4 compressed fracture as well(if he wasn't the cause of it and just didn't want to bring attention to himself..HMMM?.
I don't understand to this day and it has been 3yrs. of suffering..why he failed to tell me that significant piece of information.I had to discover that fact on my own,after going through a series of 3ESI's for the pain. In fact, was hit in the spinal fibers of my back during the 3rd one that I had. I jumped on the table like a lightning bolt came from out of the sky and made me jump to where my arms and legs came up from my sides. I could also describe it as when you are being paddled in the process of being revived(how it looks). I immediately raised my head to ask what had happened.The doctor told me to put my head down immediately(back into that little hole) and he answered with...and this was with a studder.."FRICION". I was told to raise up quickly..to sit up and asked if my ears were ringing or did I have heavy breathing. I told him that my hands and feet felt completely numb. My feet, as if the soles of my shoes were the only thing on. I know of his concern because I was kept there and monitored for and hour then released into the world to never regain the feeling again( to this day) in my hands and feet.
As the pain escalated, the following months felt as if I was being stabbed in my back with a knife and my elbows felt like a hammer was hitting it over and over(funny bone..yet there's nothing funny @ it).
The years of suffering has taken a toll on my Family as well. I have to say that I am blessed to have such a wonderful husband, who has stood by my side and defended me.He has relentlessly taken me to Neurologist,Neurosurgen's,Chronic Pain Specialist and it is still going. I am not going to give up. I still carry the hope that some day I will regain my life. Maybe not to the fullest, but at least to where I can enjoy a day without worrying of being struck down.
My days now consist of 2-4 hours of sleep...if that.. and that takes its toll on me and my abilities to be able to think, much less perform everyday simple task. If you deal with it long enough you lose so much time/hope and it seems so much love from those people that just don't understand. They say that they do, but in all reality they are lost and can't relate to your pain. The pain that is eating you up on the inside, taking it's toll on the outside as well.When a person is unable to do as they once did, is so unfair. My post is to make those who fail to realize the compexities of disability and to not judge "the book by its cover"..cause there is no way that they can..not unless they have been there themself or as they say, "in our shoes". They could never understand the dept of it,but I am blessed to have a wonderful son who takes good care of his mom. He is there for me and I just want to thank him for that and I'll never forget it.Thank you Bryan for the love that you share and the laughter you give. YOU ARE SPECIAL..A GIFT FROM GOD.
If you have been put in this kind of position pain and don't sleep, find what is the cause..don't give up and let them win. Something is taking your life from you..probably the Dr. who didn't do your surgery correctly or left something behind he failed to mention because it could be his hide. All I am trying to say is don't let life pass you by because of someone else's mistakes that you could make right and remember that they do not feel what we're feeling.
There is one good thing that has come from all of this...I found GOD and I urge you to pray and read The Good Book...THE BIBLE...GOD chastises those He loves...He is our Father..our Heavenly Father.
So, just as any good father would do for their child...He does for us.
Come back and see me...maybe then I will have more sense @ me since I haven't got to much sleep...:) It really makes a difference..here lately I have been falling asleep sitting up and I guess I could standing as well..lol..not funny.
This is my first post, but the rest will only be on topics that are plaquing us...specific topics.Throw some at me and I will get to it if any way possible and as I said I am new to this....but I will help in any way that I can.
Contact me if there is anything that I can do for you...Remember give it to The Lord and He will do the rest..Knock and the door is open.
Empathizing and Sympathizing always,
Karen Elmore