1:35pm April 24, 2013

I am sick to death of people telling me what to do.

So now the visiting nurse says some doctor I’ve never met in my life says I’m not allowed to have ginger ale. And the same doctor wants my feeding speed to go from 24 hours a day up to 12 hours.

I point out that she has messed up priorities given that the ginger ale and slowing the feeding speed down probably saved my life or at least kept me out of the hospital.

She says its her job to educate me. Like I need any further educating. But apparently according to her every single thing my body screamed at me to do on Saturday was bad bad bad and I need to stop and obey people who don’t even know me, never even met me.

I tried to educate her about how with gastroparesis, you do orally as much as you seem to be able to tolerate.

But no, apparently if I do anything by mouth I could aspirate it.

Except I don’t seem to be aspirating. At all. And by now I would have noticed. Given that I was aspirating up to several times of week before the tube was placed. And now I’m not aspirating at all. Not even once.

What I was told to do in the hospital was do the feeding speed as fast as I would tolerate. If I experienced any of several disturbing symptoms I was supposed to turn down the speed.

Which is exactly what I did.

But now some nurse who thinks I’m stupid or something, thinks I’m doing it all wrong, because some doctor I’ve never met who thinks I’m stupid or something, says so.

Somehow I feel like this is more about covering their asses should I keel over dead one day, than anything about helping me.

These are of course doctors from the same system that tried to convince me not to get the feeding tube at all, because “the alternative” (dying) was better. And now they are acting all concerned about my health.

I don’t get it.

The nurse is terrified of twenty four hour a day feedings. Even though my body seems suited to them. Even though I was told its totally acceptable.

She seems to think I am going to lose weight and lose muscle and WTF why weren’t they worried about this back when I really was losing weight and losing muscle.

I’m getting more than enough calories in twenty four hours. I don’t get it.

I was told the twelve hour feedings are a matter of convenience. It’s a luxury thing. The ability to stop for twelve hours and do whatever you want, not tied to the IV pole. It’s not a necessary thing.

She believes the twelve hour feedings are a matter of necessity, that anything less will cause me to drop tons of weight and maybe die.

I don’t even know how to communicate with this person. She is so strange. She doesn’t trust anything I say.

And I don’t trust her. Her priorities are all wrong. She’s all about making sure I don’t get a bedsore sometime in the future from twenty four hour feedings (never mind that they don’t change my positioning in bed at all from what it is on twelve hour feedings), but doesn’t seem to care if I dehydrate in the present.

Oh and apparently. See. I took all these steps to stop the horrible dehydration I was experiencing last week. And it was horrible. And it was dehydration.

But I was measured. After taking those steps. And now I’m not dehydrated. So apparently this means I was never dehydrated. So apparently that means I don’t really need to do all the things I did to stop the dehydration and prevent more of it.

It’s so damn circular I don’t know where to begin.

And she thinks I’m the one who doesn’t know what I’m doing.

WTF.