Sunday, July 29, 2012

approved after 7 tries

finally, i was approved for disability. 7 attempts and i just kept fighting and it finally happened. This last surgery though, added soo much to our medical debt. I got the bill, the insurance paid all but a little over $14,000 yikes! Ever year, we have to pay about $10,000 towards my medical bills. Its not so bad now that i have insurance of course,but i am still trying to pay my old debts off. I don't get medicare yet. Disability didn't go all the way back to 2009 because he said he couldn't go any further back from the last judges desicion which was july 2010 i think. That cut out quite the back pay that i was hoping for.But, I keep telling myself, one day i will be debt free!  Reality is, shit always happens haha. It's usually "Yey! We paid this off, we will have an extra 100 bucks to put towards another bill!" Then a week later, something happens and you have to fork out a bunch of money. Like this year, my taxes came in :) so sweet! then my fricken house burned :( not so sweet. that was in february and my house still isnt finished. I can't help get it done any faster and it just sux. I had another hip surgery in May, so I really can't help cause I couldn't even walk. It's been nearly three months and i'm still hurting but not as bad. I'm attempting to go with a cane. My knee and the back of my hip are screaming at me the whole time though. maybe im not ready yet. People keep telling me not to rush it. But I have this hope. All of my joints will be surgically repaired and by the time I am to the age of text book OLD. I will finally have the body of a 20 yr old :) it may take me another 10 yrs of surgeries. But i will only be 40-41 then :)maybe this little momma will have a new everything!

Saturday, February 18, 2012

the outer world see's us as normal

The judge who denied me disability, was thinking like this lady, only he wouldn't listen to what was wrong. When i left the courtroom i broke down in tears and my lawyer asked what was wrong. I said' he doesn't believe me." she said, "honey ive been doing this a long time, you will get approved" I replied," ive seen that face a million times, he doesn't believe me." and i found i was right. the letter from the judge stated that he did not find my pain fully credible. But i am still fighting. I have another hearing sometime soon. they said in May or June probably. I let them know in May i will be having another hip surgery so not put my hearing date while i'll be in the hospital. Hopefully they won't.

Social Security disability and Ehlers Danlos Journey

Having Ehlers Danlos is painful. Granted, I was used to pain my whole life. I have always worked, even had two full time jobs and college, then went down to one job. But in 2009 it came to a point to where I had to go part time. I was beginning to feel useless. I was always so tough and always the provider. Then EDS started getting worse. I filed for disability because i could only work part time. A measly 4 hrs a day. Then in 2010 I was fired on sick leave. Yeah how nice of them. A month before i was fired, i was denied by the disability judge. He said he did not find my pain fully credible. I wanted to pull all his joint outs and then see if he would change his tune. I kept fighting though and in 2012 i am still fighting for disability. After two failed hip surgeries and one failed heart surgery, they are still denying me. WHY? It's not the lawyer because I fired them when i lost and got another one. I traded in lawyers thinking it was them. I am cursed. I have another hip surgery in May 2012. I have a rarer form of EDS. I have Hip Dysplasia with mine. but, all my other joints dislocate as well, including my spine(ouch). I have more surgeries that I need, my knees, stomach, back, and we may go ahead and put a pacemaker in my heart. I'm on the fence tho. I have had stomach surgery before. It was due to my organs growing together and all gathering up on my left side, weird and very painful, like being ripped apart when i turned my torso. unfortunately, i have to have that same surgery again. UGH. I would really like it if disability would listen to me. EDS has changed my entire life for the worse. I'm not that outgoing, strong woman i once was. It has made me weak, scared, and i feel useless.The anger builds up inside so I attempt to do things like a normal person and then i end up just hurting myself and regretting it. I am so tired of not being me. I put on a fake smile every day because I know no one wants to be around a sour puss all the time. But when I'm alone, like in the shower. I sit on my shower chair and cry my eyes out. I want the old me back. I see the best hip specialist in America. Dr Clohisy. look him up, he's famous. But even he cannot promise me these surgeries are going to work. I get to be part of his research however. Ehlers Danlos/hip Dysplasia in one person is just a rare thing. about 30 cases reported. I wish i could get paid for it. But, I'm just a butchered guinea pig is all.