Sunday, July 29, 2012
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
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.