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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.


( 1 note — Leave a note )
Jan. 13th, 2006 11:55 pm (UTC)
plantgirl said...

Sorry Little T's hurting. :(

The levels of bureaucracy you have to deal with must get sooo frustrating. I'm impressed that you're willing to keep slogging away through them to get what you need.

Glad you're back writing again.

11/03/2005 11:28:00 PM
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