I feel like I am completing medical school through correspondence course. And by "correspondence" I mean endless piles of paperwork, faxing, refaxing, phone calls, transfers, missed calls, and unreturned calls.
Lula has 7 doctors at 4 different hospitals, 3 therapists, a service coordinator, a social worker, and numerous night nurses. She has therapy 5 days a week and usually 1 or 2 doctors appointments per week.
Her schedule rivals Obamas, but I can handle that. It's the medical black hole that I regularly seem to fall into that feels like an abyss. I don't even know what I don't know.
Just when I think I have a grasp on things somebody says something like "we needed that paperwork last week - you had to fax the consent to the health management department etc etc. Now we may have to reschedule your appointment for June. Don't you have a case manager?"
Moments like that truly are devastating because I can't even protect my child from incompetent bureaucratic pencil pushers, let alone disease and illness. Exhausting.