"I'm sorry I am such a burden."
"Marvin you are not a burden. You cannot help having POTS. The only time I find anything about you difficult is when you keep forgetting your shoes and I fall over your size 27 clodhoppers for the 8 millionth time."
These are the conversations we have. Five steps forward and five steps back with a chronic illness that really doesn't care if you have plans. An illness that just when you think you are in a good spot, it sneaks out from behind and hits you upside the head.
The good news is that thanks to a port, regular IV fluids, and medications he's probably more stable than he has been in two years. But even in stability we still have blips.
We had one this past weekend. We came home from an errand and he went to lie down. The dizziness, sweating, and seeing black spots tipped us off that he needed fluids and salt fast. He got them in but still needed more. I called the on-call nurse for fluids. Should be a simple fix right?
Of course not. I spent the next three hours going back and forth with the on-call intern about what to do. Of course, I got what we needed, but geez, why does it have to be so darn hard?
Marvin's doing better, thanks to Mom not taking no for an answer. I've also sent a long and detailed email about how we need a better plan in place for these things. I just don't have time to fool around with this nonsense. The kid has plans and the sooner we have better medical plans in place, the sooner he can keep going out and conquering the world.
