I have to tell you. Applying for disability was a hard thing for me to do, but admitting to my self that physically I can't work any more. I have applied for it and I received my refusal letter, then my husband and I went to a lawyer. He say's it can take up to 2 year's to actually get it. There are step's that you have to go through. I worked for 33 year's of my life and I didn't want to apply, but like my lawyer said to me. Every time I received a pay check they took out Soc Sec money out. So I am just asking for some of my money back which I have worked for. It all depend's on your doctor and Soc Sec will have you scheduled to go see a different doctor. It depend's on you sisuation. For me they had me go see a pharist. Which he also told me the same thing as for the gov't take's it out of your check every time you get paid. It is difficult to get because there are so many people out there today trying to get it. So I wish you luck with this. I am now waiting to have a hearing in front of a judge. You have to do what is best for you. As I said before. I have alway's been a working person, but having had 3 surgeries it has really taken a toll on my body and my NL even stated in my last visit that he advises me not to work. We who have Chairi have to except the thing's we can not change. It was hard for me, but I am doing what is best for me and my family. So if you decide to apply I suggest you do it right away. Good luck. Let me know what you decide.
I am currently waiting to hear back from temporary disability. I am an RN and can no way work in the current state that I am in. I have been dealing with minimal symptoms from chiari for about 10 years (I'm 28) but I am in an acute ? Phase right now I guess which just led me to my recent diagnosis and the daily headache, dizziness, hand tremors, blurred vision, neck spasms ( and the list goes on) makes it impossible to work. Now I'm nervous that I will be denied by disability, although I have been working since I was 14 years old. even my neurologist wasn't sure about me going on disability but I work on a med/surg step down floor. With stoke patients ( lots of heavy lifting) and patients with chest tubes ( I can just see myself stumbling over one of those and pulling it out) or going to take a patients blood or put in an iv with my hand trembling all over the place, yeah I wouldn't want me as my nurse!
alls we can do is try. if we get denied than appeal. it may take some time and fighting but youve been living with chiari, so you are a fighter. i havent yet applied but am going to chat with my ns about it on tues. i work on an assembly line building car gears. i really dont think its possible for me to go back. most people, unless you have it, dont understand. you never know when you are gonna have a good day or a bad day. its live each day by the moment and enjoy the good ones. i wish you luck. did you have a lawyer or file independantly?
amen to your comment on noone knows what its like to live with chiari but you!!! and yes...you DO have to just ejoy the good days...which to many others our there without chiai are bad days!!! so ...we are very strong ...never deny yourself that!!!
I am on SSDI but the award [if you can call it that] was not for CM, rather for other health issues.
The process was really not nearly as difficult for me as what I've read it is for some. I applied when my symptoms where not even close to what they are now, appointment was a few weeks out. One interview to which I brought a spreadsheet with a copy of medical conditions and dx from birth on, they then sent me to a state doctor [who was extremely rude], I waited what seemed like forever but in reality was probably less than a month and we got a letter stating my claim was approved and specified the date that I'd receive the first payment and what the amount would be.
SSDI is IMHO a nessasary evil in this system. Some times we have no choice but to go this way. I know, I've tried so many times to get off of it. I've put myself in the hospital on a few different occasions trying to force myself to work so I could get off of it. But sometimes you just have to do what you have to do. It's taken me years to admit to myself what the folks at SS already said years ago.
So my new friend, it's no cake walk, it's no handout either, if you need it you need it just turn in the application and follow the red tape road. But do not allow the red tape to pull your strings as CM has a way of making mountians out of nothing.
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