Health care frustrations

Little T's bruises and petechiace are fading. I take him to Hemo tommorrow. Something bothers Little T a lot. Probably his left arm, because whenever I move it, he screams at me. Actually he's screamed at me all day unless I hold him. I'm typing right now, because I have a respite care worker here. Thank the gods for that.

Yesterday I spent the entire day wrangling with our broken health care system in some form or another. I did get excellent care for Little T. I also emerged with a flu shot for Special K. I got special dispensation from the kids' ped to get it ahead of the flu clinic, which is two weeks away. I need to get us vaccinated before the Thanksgiving relative germ fest. So Special K got her shot today. She said "Shots hurt" with some surprise. I feel a little bad that the shot contains thimerosal aka mercury. But I'd feel even worse if Little T catches the flu and winds up in the hospital again.

However I failed to get anywhere in getting care for myself. I may end up paying for my physical therapy (PT) out of pocket. Through C's friend and Little T's OT, I found Nancy Byl a wonderful PT at UCSF who treats people with dystonia. I want to drive on the highway again. I need PT to retrain myself. Regular PT won't work. Telling me "do this" just results in jerking. And in fact when I had PT after my car accident, they just wouldn't do certain exercises with my upper body, because I would jerk too much. But tomorrow is another day. I just emailed someone else to get help with my appeal to the insurance company.

I also failed to get an apt with a local neurologist who specialises in movement disorders. I'm not sure if she's the right person to see anyway. I saw her in 1999 and she was very keen on brain surgery! At that time she told me to try a few drugs that didn't do anything for me. Her nurse suggested the Parkinson's Institute. I just gave them a call. Unfortunately they're not covered by any HMOs and it would be $385 a visit. We would cheerfully pay that much if we knew it would do any good, but no-one knows if my movement disorder is related Parkinson's. Maybe my maternal grandfather had it. But he was never officially diagnosed. It's all so frustrating.

But still, I started writing again on Wednesday. Back to my daily word quota of 500 words. Book's at over 20k now. I worked out a chapter outline on my non-fiction book. It will be 13 Chapters. Chapters 1-4 are basically done.