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Derek1987

Update on me going back to work

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My psychiatrist looked at my results from my adrenaline test and consulted with his neurologist buddies and said I'm done. He told my wife to call a lawyer he knew to start for government disability right there during the office visit. He used words like dangerous, no balance in the body, this isn't just a mind thing. Mind you, I had sat in the lobby for an hour and a half and started the fainting process. I was going outside to lay in the car and he called me back. Luckily I didn't faint. My hands were sweating the whole time.

 

It seems like I can't do much of anything but be bed ridden. If I go out somewhere this happens. I had my medicine that's supposed to reverse the fainting but I had nothing to drink. I guess I need to start carrying a bottle of water anywhere I go. 

 

He also mentioned it being a hereditary disease. My dad's hands shake and he takes a beta blocker for a high heart rate. He also drinks daily, smokes, and not sure if he does drugs anymore. My psychiatrist was explaining how the disease can progress and be worse in the next generation. So I think my dad has the same disease but a milder form. I think he's been copping with it with drugs and alcohol etc. My hands were always shaking all the way back to my childhood. So I probably have had this forever.  Now it's just getting worse. 

 

Bad news. But I can use it for good. 

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This is good, because all the doctors are in agreement.  I do hope your disability case comes through smoothly and easily.  Just don't give up an be bedridden entirely.  Do what you can otherwise you may get worse.

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I'm sorry you've found yourself in this place, but at least there is some consolation in getting support for your disability case. The way I see it, my condition and the severity of it are what they are, and giving up work, receiving disability benefits, using a wheelchair etc make things easier for me, not worse if you see what I mean. 

Just know you are not alone in this. 

B x

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2 hours ago, bombsh3ll said:

I'm sorry you've found yourself in this place, but at least there is some consolation in getting support for your disability case. The way I see it, my condition and the severity of it are what they are, and giving up work, receiving disability benefits, using a wheelchair etc make things easier for me, not worse if you see what I mean. 

Just know you are not alone in this. 

B x

Yes I see what you mean. There's no way I can do anything at the moment. I almost fainted at my appointment yesterday lol. 

 

Then I went to a couple places today. Not much walking just sitting. My hands are tingling pretty bad right now. Might be signs of fainting coming on. I'm laying down alone trying to calm myself.

 

This is hard. I hope the disability process goes quickly as possible. My wife had to wait 3 years for hers. She has bone/nerve problems. And now that she's gotten approved, my body finally just broke down at the right time I guess lol. I pushed through sickness I didn't even realize I had. We are both in our 30s on senior citizen status.

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On 3/7/2019 at 11:36 PM, Derek1987 said:

This is hard. I hope the disability process goes quickly as possible. My wife had to wait 3 years for hers. She has bone/nerve problems. And now that she's gotten approved, my body finally just broke down at the right time I guess lol. I pushed through sickness I didn't even realize I had. We are both in our 30s on senior citizen status.

It is hard to be chronically ill at this stage in life, when parents are too old to care for us and we ought to be out earning a living. I'm sorry your wife is also disabled, that must be doubly hard although possibly results in a shared empathy & understanding that can be lacking in a disabled/healthy partnership. My husband is an absolute saint, but still gets frustrated with me at times for not being able to do things, & I sometimes resent him for taking the ability to do them for granted.

Do you have any children? We do, and I am torn between being grateful I was able to have a family before becoming ill, & heartbroken for them growing up with a mother who is so limited & missing out on so much because of me. I wouldn't have had children if I'd known this would happen. 

Anyway I hope your disability claim goes smoothly and you get the security you need and deserve. 

Take care,

B x

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@Derek1987 - I was exactly in your shoes. When I realized that my condition is genetic, chronic and progressive and I became disabled I thought my life was over. However - with the help of my extraordinary PCP as well as my superb autonomic specialist I am now capable of a much better way of life DESPITE my illness. But it took many years of fighting, trying different meds and learning how to know my limitations and to live within them. Once you no longer have to work and push yourself every day you can learn what your limits are and then somewhat train yourself to coax the most out of them. Also - there are many medications that help but you have to find the right ones. In my case that meant going through a lot of trial and error - but it was necessary to find what makes me better today. You are still just in the baby-years and there is no reason to think that you re done. But you cannot give up and stay in one place. We have to move, in however small increments, and keep being active. What you find unreachable today may very well be your worst in the future. At least that was the case for me. Before giving up I would go to Vanderbilt since you live in TN and since they know a lot more about your illness and your options. You might be surprised what you can do with the right treatment. BTW - I also have the form of POTS your psychiatrist is referring to and I have come a long way. Hopefully you will too.   

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