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A Family Struggle

Dystonia can manifest itself in many different ways. Sometimes mental, sometimes physical. This week head been particularly difficult with the new diagnosis of neuropathy. My skin feels like it is on fire, and nothing seems to help. My Doctor says it has to do with the brain sending the wing signals to the nerve endings in my body.
  One thing I have found out with this disease is it can always be a different symptom, and you never know what that new symptom might be. It is an ever changing disease.
    I would like to find a work from home position, but those seem very hard to find, but I have to keep hope alive that I will find something. When I cannot contribute to the family or cannot provide for them it can be very mentally stressful, and that makes the Dystonia worse, but what am I to do?
   Yesterday I stepped outside and I thought my skin was going to boil because it was so hot. My Wife said that it wasn't very hot, but yet telling my body that.
  On top of that my daughter's health heavy been very good we have taken her to many doctors and she seems to have the same problems. She tries to stay upbeat but sometimes it is hard. This disease has impacted the whole family not just me.
   Our car has been in the shop for 2 weeks, and since it is the only car we have it has been very difficult to get around. I want to continue to give you insight to the Daily struggles of this disease so you can appreciate your health, if you have it. The neuropothy seems to have affected my eyes as well they burn just like my skin does, and if it does not get better than I have to make another appointment with my Doctor, and see what other medications are available.
   This week we have had our grandson who loves to play with Papa, That is me, but I haven't been able to do much so my wife once again has to pick up the slack. To be honest I do not know how she keeps it together. There are times she has cried on my shoulder and I figure that is the least I can do for her. She carries a heavy burden.
    The Last storm I had my shoulder, hip, and chest bone popped out and she had to pop them back in and hear me scream this makes her almost cry, but it has to be done. I apologize to those who knew me before I had this disease. I am not the same person that I was. I am more quiet, reserved, and probably not as much fun as I used to be, but this disease takes so much. It takes a toll on your body when you have Storms 4 to 5 times a day, and I do not think people realize how tired I get in those storms, but my body will not stop. there are sometimes my legs will run for an hour without stopping and it is exhausting, and the mental part is I know I am going to have one every morning and probably one on the afternoon and then in the evening. So I spend all day, and my wife watches me or has my son watch me all day just in case.
   This week I started one while folding close and I ended up on the floor banging my head on the wood floor that we have. So my wife had to get a pillow, and put it underneath my head and try to keep me from hurting myself, because I will! I try to pull my hair out, I have knocked myself unconscious by hitting myself in the head, and she is trying to stop it. That is why I say this Disease is a family disease. Even at church my mom and dad keep an eye on me to make sure I am ok, because they have been dealing with this disease longer than I have. My sister Rachel who has posted comments has dealt with this since she was 16. I want my dad to post on this blog and I think he will in time, but at the moment he is very busy! There are times that the whole world seems dark, and I will never get out of this "Dark Place" I know my sister mentioned it to me. I hope you do not mind me sharing this sis! Love you!
   The Financial struggles are another thing altogether we cannot get any help from the state, but our church family has given us more help than I could tell you and that is what church families are for, I hope one day I will be in a position to help someone! I Hope this blog will help someone. Yes I get discouraged, I suffer from depression it is very difficult for my family. I don't get to take my wife on dates where we can just talk, and I miss that, but I know there is a purpose for all of this, but I just do not not know what it is. All I can do is put one foot in front of the other and keep walking no matter hard the path is! the rains will come in my life, and the winds will blow, but a faith that is tested is a faith that can be trusted! Just pray for me that I will be able to stand, because there are times I do not think I can take it anymore! but I must keep moving forward no matter how hard it gets! Please pray for me because it is getting harder everyday to stay positive when it looks like everything is crashing down in my life! Just maybe what I see crashing Down God sees everything falling in place!
  This may have been just ramblings, but it is how I feel it is my struggle, and I hope it can help someone with there struggles

Comments

  1. Just gonna say “I know” and I really do. I am thankful for the whispers in the night and the songs in the dark. Without the Lord, I’d find no purpose. With him and his strength, I make it one day at a time. Love you...and I’m glad to hear you got to go to moms for Independence Day. We were missing y’all. Love you so much, and I really wish the disorder had stopped with me. God bless. 💙💙

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