Living With Dystonia

     I do not get offended very easily anyone who knows me knows that. I Just let it slide and figure someone was having a bad day and move on to the next thing whatever it may be, but I do get frustrated when people refuse to acknowledge that Dystonia is a real disease, or they think that The Patient has made up the whole thing in there head. believe me if I were going to make up a disease it would not be this one! I know some people think that everything I do is fake, and just to get attention because they have told me so, but I could get attention other ways than this, and my wife would tell you that some of the things that this disease causes would be hard to fake. As you read this you may think the whole thing is a farce and I could quit whenever I wanted to, and you can keep that opinion that does not bother me, because I know the truth, and those who have never experienced the disease for themselves I get it.     There are however 2 words that I know get under the skin of most

 Today my anxiety is at about Level 9 not sure why, but then again there never is a understanding of why things happen, and that was conveyed by my doctor yesterday, He said "your brain is wired differently than anyone else " so I am uniquely and wonderfully made although some would argue about the wonderful part.    It is frustrating to go to a doctor and have them tell you that there are no answers. They do not know why I cannot feel electricity, or why I have storms at different times, or why my muscles twist and move at random, why anxiety comes with this disease, but the one thing he did tell me is that I am one of the most resistant people he has ever met to modern medicine, and that is because of the way my brain is wired, I picture little black and white wires running through my brain. is what he says.   today I cannot figure out what is in my head I just feel trapped inside of it and not able to make sense of anything going on. I cannot take what is going on in my

  I know that this title may be weird to some of you and that is understandable, but it is true I fight with myself mentally most of the time, there are sometimes that it is worse than others, but it is always there.    The fight always seems to be what my body thinks I can do and what my mind thinks I can do. I will never forget when I went back to the doctor expecting him to release me to go back to work and he didn't. I fully expected that I was going back to work and nothing would change, and I still and persuaded sometimes that this whole disease is something I made up somehow I should be able to stop the tremors, and resume a normal life, but the doctor said my eyes told a different story I really wasn't there. I had times when I couldn't remember what the doctor had said and I was stunned when he told me I was not cleared to work, or was I.    I have times where I doubt this whole Dystonia thing is real, and I need to get back to work like I am supposed to. Then

One thing I have not really addressed here is the constant pain that Dystonia causes. There is never a moment when Pain is not a reality, because with this disease pain is your reality. There are definitely Times that I feel better than other, but my muscles never stop.    During a recent Dystonic storm I was so exhausted, but my muscles kept twisting and turning I looked like an owl because my neck was turned almost completely around, and my legs would not stop running, and there is nothing that can be done. I have to wait it out, and wait for it to finish. It is like you have run a marathon and you cannot go any farther, but you keep going only because it will not stop. I have gone to the hospital several times with these episodes that do not stop, and they try to give me an I.V. and it does not work because my arms and hands are twisting and thrashing, and I get told to stop it, does not make much sense because if I could have stopped it I would not be in the hospital in the first