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 in the shop more than we have driven it. We got an extended warranty so we have not had to pay much , but on SSDI a little bit is alot. we have to pay the takes for the parts which is an insane amount, they gave us a car to come home in again because they cannot figure out what the problem with the Kia Sorento is. So now with the extended warranty coming to an end we have to figure out something because between us and the extended warranty company we now have spent somewhere in the neighborhood of 10,000 dollars in repairs on this car, but if the warranty runs out and it breaks down we will have no money to fix it, and on the other hand if we try to get a new car we have limited resources with which to get it because I am disabled. Quite a pickle and not sure how to handle it, but this is not the first obstacle in our Journey and certainly will not be the last. Sometimes it seems nothing goes right, I can feel the walls creeping in around me and there is no way out no matter what decision that I make there are consequences to each that I am not sure which way to turn, and it can be disheartening as well because I have a family to provide for and I do not feel that I am doing a very good job of that. I get a sense that I have failed my family because I can no longer support them myself and nothing seems to be headed in the correct direction. I have tried finding work from home jobs, but those are hard to come by. I am not lazy. I say that because I have had people tell me that I am lazy and do not want to work, which is not the case. I just cannot work in an office environment like I once could, and I miss working. If you are able to work do not complain about the job, I was guilty of that myself and now I want the Job I had that I was complaining about. interesting how life sometimes works out. This is definitely not where I thought I would be at this point in my life, but it is where I am, and somehow we have to make it work.
When I tell people I am on disability, and they will say things like, hey this is only 50 dollars or to fix the sensor on your car is only 168 Dollars. They do not understand how much money that really is, and how much stress it puts on someone with Dystonia.
I am not the only one in my family that suffers from the disease. Everyone Does because they are either worried about me when they go places or they cannot go do things because someone has to stay with me. My family has given up many things to stay with me on this Journey, as my wife says "we are in this together" I do not know where I am going or what the next step is , but I know someone who does and I have not gone without yet, when I really should have. The Lord has provided for me weather it be through people or my church family or miraculously sometimes he has made a way when I could not see one. He will have to do it again because I cannot. I cannot see where I am going I am just commanded to follow, because He has been down this pathway before. I pray he gives me the faith to believe. because sometimes the way is hard to see, and the decisions, there does not seem to be a good one.
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 in the shop more than we have driven it. We got an extended warranty so we have not had to pay much , but on SSDI a little bit is alot. we have to pay the takes for the parts which is an insane amount, they gave us a car to come home in again because they cannot figure out what the problem with the Kia Sorento is. So now with the extended warranty coming to an end we have to figure out something because between us and the extended warranty company we now have spent somewhere in the neighborhood of 10,000 dollars in repairs on this car, but if the warranty runs out and it breaks down we will have no money to fix it, and on the other hand if we try to get a new car we have limited resources with which to get it because I am disabled. Quite a pickle and not sure how to handle it, but this is not the first obstacle in our Journey and certainly will not be the last. Sometimes it seems nothing goes right, I can feel the walls creeping in around me and there is no way out no matter what decision that I make there are consequences to each that I am not sure which way to turn, and it can be disheartening as well because I have a family to provide for and I do not feel that I am doing a very good job of that. I get a sense that I have failed my family because I can no longer support them myself and nothing seems to be headed in the correct direction. I have tried finding work from home jobs, but those are hard to come by. I am not lazy. I say that because I have had people tell me that I am lazy and do not want to work, which is not the case. I just cannot work in an office environment like I once could, and I miss working. If you are able to work do not complain about the job, I was guilty of that myself and now I want the Job I had that I was complaining about. interesting how life sometimes works out. This is definitely not where I thought I would be at this point in my life, but it is where I am, and somehow we have to make it work.
When I tell people I am on disability, and they will say things like, hey this is only 50 dollars or to fix the sensor on your car is only 168 Dollars. They do not understand how much money that really is, and how much stress it puts on someone with Dystonia.
I am not the only one in my family that suffers from the disease. Everyone Does because they are either worried about me when they go places or they cannot go do things because someone has to stay with me. My family has given up many things to stay with me on this Journey, as my wife says "we are in this together" I do not know where I am going or what the next step is , but I know someone who does and I have not gone without yet, when I really should have. The Lord has provided for me weather it be through people or my church family or miraculously sometimes he has made a way when I could not see one. He will have to do it again because I cannot. I cannot see where I am going I am just commanded to follow, because He has been down this pathway before. I pray he gives me the faith to believe. because sometimes the way is hard to see, and the decisions, there does not seem to be a good one.
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