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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Wednesday, August 8, 2012

Disability update...

Well, I had my disability hearing on the 31st. My lawyer says it went well and he is pretty positive about it, but I am still nervous. The say I will receive the judgment in 6 to 8 weeks…I’m not getting my hopes up that this is finally over.

I’ve been pretty exhausted for the past two weeks or so, and the pain in my leg and arm has gotten better. The hip pain has gotten worse though. I can lie down in bed for about 8 hours, and then I have to get up because the pain is pretty bad, and my hips are stiff too. It’s not something that I’ve had a problem with before so I am unsure of how to handle it. And since I don’t have health insurance, it’s not something I can get help with. At least not right now. I’ll need to save up for an appointment, but I am going to email NIH to see if they can help. I’m still not in a study for my mitochondrial disease, but it looks like I might get into the undiagnosed clinic (because my symptoms don’t fit into any know mitochondrial disease).

Kate is working on her senior project this week, and she is really enjoying it. It is so nice seeing her do something she loves to do. I know a lot of parents say their child deserves something special, but Kate really does. She was abducted by her birth mother when she was 2, then she had to put up with the birth mothers constant dropping in and out, not to mention my health and that she helps out around the house often. I love her so very much.