guess i am lucky i was dxd sept/09 recieved my first ssi check on dec /09/ i did mine in idaho filled out the form on the internet,got a call a week later and had my check 3 weeks later. and i never got any back money they said they dont do that for my type of disability.i was dxd with cml+ph and then got mds mixed in. i am in deep remission with the cml+ph but the mds is not getting any better nor any worse
Disability?
Started by
teb
, Jan 25 2013 05:17 PM
22 replies to this topic
#22
tazdad08
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Posted 13 January 2014 - 02:26 PM
I have been following a few things about CML and people in the automotive industry.... just seems odd
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#23
tazdad08
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Posted 13 January 2014 - 02:40 PM
I too applied and was denied. I have talked to my state rep, mayor, governor, and any other person that I could educate about my situation. The disability commissioner actually had the $%#s to say "are you sure that you take chemo EVERY day?". I simply told him that he must be as educated on CML as the people working for him that are making disability decisions and that all he had to do was go to any creditable website to find out that I was telling the truth. My attorney did say that the current law states that I can be deemed disabled anytime from the time of filing thru the approval date, and that my back pay can vary tremendously. I have been waiting for a hearing for almost a year.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
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