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This Is My Reality


Imagine if you will that in the blink of an eye everything you knew changed. Everything you could do every exercise you enjoyed, every sport you Loved to play, and your job, that you say you hate, but really you don't want SSDI, was taken away. Put yourself there for a minute or even a second. Picture what your life would be like, the drastic changes that would have to be made the financial cuts of things you enjoyed were no longer affordable. If you played an instrument you may not be able to play it with this disease there is no end to what it can effect, or a sport you loved to play, no longer even an option, and all in a span of about 12 hours. This is my life.
  This is the reality for every Dystonia patient and if they are old enough to remember they remember when everything changed. for me it was October 16, 2016. I started like a normal day except I had ear pain. I went to work thinking nothing of it assuming that it was one of my ear infections that I usually once or twice a year, and I would go to the doctor and he would prescribe and antibiotic, and I would feel better in about a week. I was wrong. I went to the Doctor, and he did prescribe antibiotics, but this time was different. I just did not know it at the time.
    So I carried on with my day I had to drive to Ada ,which was about three hours, to troubleshoot a network issue. Little did I know that it would be the last. I got back about five having the job completed and the issue resolved, and said goodbye for the night to my coworkers whom I thought I would see the next day. Yeah was I wrong.
   That night I had a Dystonic storm that lasted about three hours so we decided to call an ambulance to get me to the hospital because there is a combination of medicine that can stop the Dystonic storms, and again I thought it would stop I would go home, and start work the next day. I was wrong again.
Can't beat good friends
    I did not get sent home from the hospital they kept me because I was running a fever and as long as I was running a fever they would not let me go, neurologists orders, and for some unknown reason they did a staph infection test in my ear, and I learned the next day it came back positive. They put me on antibiotics again and it took four days in the hospital before I could go home.
   After I was released things felt different my mind was not there all the time, I could not focus. I would describe it to my wife as fading in and out. on the way home I remember being in the car leaving the hospital, and the next we were home. I have no memory of riding home, but my wife said I was talking the whole time, but with a glazed look over my eyes. The next Monday I went to the Doctor not feeling well still, but figuring he would release me to go back to work, but he did not that is when he informed me I needed to fill out short term disability papers, because I may not be going back to work. I did not know what to say this is not what I had envisioned, but it was now my reality.
  The next few months were hard I went through bouts of extreme depression, which I still struggle with today, I was angry, as if that would help anything, and over the next 2 and 1/2 years, which brings us to now we have been trying to stay afloat.
My Wife and one grandkid
   It has been nothing like what I had pictured my life to be. I go into stores sometimes, and my wife has to help me out because my legs will just not move. I sometimes now stumble, and get the looks form people that I really should not be drunk this early in the day,which I am not, but the disease affects your mental capacity sometimes. So please do not Judge a book by its cover you can look at someone and you have no Idea what they are going through. The looks I get when I park in a handicapped parking space,Wow, I did not even know those looks existed, but we are human we make snap judgments about people when we should not. There are times I have to use the motorized carts in the store because I cannot walk believe me it is not because I want to.
   My wife of 21 years has stood by me no matter what stupid things I have said or done. If we have to leave early from an activity she will encourage me. I feel like I have ruined the whole day because I cannot do anymore than what we have done, but she does not see it that way. She sees that on the good days she gets to spend time with me, and she is not concerned how long it lasts. She is just happy we have the time we do.
  I still struggle with depression I suppose I always will some days are better than others, but since I have a form of dystonic neuropothy I cannot go outside on hot days because my skin feels like it is going to boil, so I have to stay in a cool place, and not do too much or I will give myself an extra Dystonic storm, and I usually have 2-3 a day anyway. I do not need any extra.
My Daughter and 2 Grandkids
   This is my reality, and this is the reality of anyone who has the disease. I have and am still trying to find work from home,but it is proving more difficult than I thought, even though I have quite a few IT certifications. I am still trying to process all of this even after almost three years, and I hear things like if people would go back to work than they wouldn't need SSDI, or I have heard that people say that only lazy people have SSDI, and I am here to tell you that is not true. If I could find a work from home position that would provide for my family I would do it in a heartbeat, but that opportunity has not presented itself. I may appear normal, but not many people know the half of it!
     The purpose of this post is that if you are healthy enjoy your reality because others are not so fortunate. My life is not terrible, yes I go through periods of depression, and we have financial struggles, and I have mental struggles, but things could be worse
, but this is my reality. As you go through your day today be thankful if you have a Job don't always be waiting for Friday. Enjoy being able to get up, some do not know if they will be able too. Enjoy the sun for me I cannot. Enjoy your reality because it can change in a heartbeat.
   If you read this blog please click the follow button at the top right of the page so I know if this is worth continuing. If you have read feel free to comment I do have the right to not publish the comment if I deem it inappropriate. I hope today you will enjoy your reality as i will try to enjoy mine. God Bless.

Comments

  1. I was sixteen. It was November. I played in a basketball game. One week later, I was in the hospital hardly able to move and couldn’t walk. I left the hospital never to play a basketball season again. It is amazing how fast things changed. My seizures started Anniversary week at church-March 2009. I never again was able to attend a church service at Victory Baptist Church....or any full church service again. It’s amazing that with my horrible memory, there are some things I never forget. You getting the seizures is one of those. I try to be content with my situation because I know this is where God wants me, but that’s not an easy thing for this flesh to accept. My daughter was so young-five- when all of this started with the seizures. She has had to grow up far sooner than she should have, but I have to believe that’s God’s doing as well.I pray God helps you on this journey to find a purpose . As long as God leaves us here,there is something he wishes us to accomplish. Love you...and pray for some better days ahead...and laughter... because it helps.😊

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