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Who and Where am I

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No Light At The End

Went to my Doctors Appointment yesterday. He asked if i had any new symptoms since I was there last, I chuckled, with this disease there are always new symptoms things you never expect to happen.
 Like a couple of weeks ago my legs just gave out I grabbed a door and went sprawling into a bedroom, who saw that coming. I have had a muscle in my back that has been twisted for about a 2 weeks goes from my back down to through my leg. So I never can describe all the new symptoms that I have had because there are always new ones and I do not remember them all.
   When I went on disability I had to take on medicare as my primary insurance, and they do not pay much found that out when my doctor told me what my balance was for appointments going back to May, and I went on Medicare in April. So now we have to try to come up with the money by the end of the year for the remaining balance for the Doctor.
  Meanwhile our car is in the shop again, which makes 10 times this year. I think it has been…

The Dark Place

I had to go on disability three years ago today, and I was proficient in PHP, CSS, Python, Helped schools with WordPress issues, and set up and designed networks using DHCP  and also DNS worked with them helping with web design and front end and all of the backend work as well
   Dystonia does not allow me to use those skills that I worked so hard to perfect, and it feels like all the time and effort I put in was wasted because now I can do it if i could do it. There are some days that I am fine and feel like I could go back to work and resume right where I left off and then there are other days that I couldn't
    This is mentally taxing and discouraging knowing that you can do something, but not get the opportunity to do it. I actually loved what I was doing, and it was providing a decent living for my family, and now I cannot. I feel I have let them down because I am supposed to look out for them and there well being, but with everything getting so expensive I am not sure how l…

Speaking Dystonia

There is so much in life we take for granted. We go about our days and never really think about the small things . One of those is just our day to day talking. I know not everyone with dystonia deals with the speech issue but if you do it is definitely interesting.

     After Josh and I were married we had moved into a new house and his sister had come to help us unpack. I remember I had made him something to eat and asked him if he wanted something to drink. He said he wanted some klim. That was the first sign of dystonia but we didn't know it at the time. If you read klim backwards its milk. We laughed about it and didn't think much of it. Then one day he said we needed eeffoc snaeb, that's coffee beans. So it began!

    We now have our own language and communications. Sometimes his text will be backwards. I'm not talking just the words but the whole text. The last word will be first with the rest of the text following in the wrong order and spelled backwards. I…

Disability is not a vacation

One of the things I do not like talking about, but is real to Patients with Dystonia is the Financial problems that come along with the disease. This problem brought about my depression, anxiety, and feeling of worthlessness because I could no longer provide for my family. It is not a permanent vacation. I want to make that clear!
  Believe me, the last thing that I wanted to do was rely on the government to provide for me and my family, and I never would have guessed at 42 I would be disabled and not able to work. I have been asked why I cannot work from home, and the answer is an easy one, because I do not know what days I could work and what days I could not work. I can have a decent day one day and a bad day the next, or I can go from having a good hour to my brain starting to misfire and the rest of the day I cannot do much of anything, and sometimes one moment I am normal and the next I am having a Dystonic storm it cannot be predicted, and getting people to understand this se…

Guide: Talking to a person with Dystonia

To some closing ones eyes while someone is talking is considered rude, but you will find that if you visit a Dystonia patient they may indeed close there eyes. The first thing that comes to your mind is that they are not listening, not interested in what you have to say, or have become bored with the conversation, while this may be true when talking to a non dystonia patient it is not however the case. There have been many times I have closed my eyes when talking to someone, and they will get offended because I did so. There is a lack of understanding the dystonic mind.
    The Dystonic mind gets overwhelmed quickly, and if distractions are not shut out the brain will go into what I call a frenzy, and thus cause a Dystonic storm or I will forget whatever you where talking about anyway so I will have offended you anyway either because I closed my eyes, or that I was not paying close enough attention to the very important, worth getting offended subject about which you were talking.
  …

The Awkward Staring

One of the hardest things with Dystonia is trying to know when you can go out with the family and do something, go somewhere or for how long. I know for most people if they want to go to get something or go somewhere they can hop in the car and go without a second thought, but for me that is not the case. We have to look at the weather forecast to see if there are going to be any storms we have to know how much noise will be there what kind of acoustics will the room be in, and for some reason when we ask these questions some get offended and tell us that if we do not want to come then don't, but we are not trying to find an excuse not to come we are trying to find out if it is a possibility. Sometimes it is and sometimes it is not, and sometimes we do not know so we give it a try.
   for example I had a good week a couple weeks back and my wife had some things to do so we decided that I would go, and we always know the risk of my having a storm in the car, or not being able to w…