6:30am October 20, 2012

And when I was in the hospital.

I got flat disbelief that I hadn’t eaten more than minimally in several weeks, until I spent several weeks in the hospital on no food at all and didn’t even think about or request food ever. Then, and only then, did they do the “OMG you’re burning muscle, that’s BAD!” thing.

I suspect this was due to the fact that I’m fat. And that even after losing 40 pounds in a shockingly short period of time, I was still fat. I think if I was thin, I would have been taken far more seriously, gotten treatment for the gastroparesis right away, and been diagnosed with gastroparesis sooner. And they’d have figured out the severity faster, given the fact that I’ve been very obviously (if you know the symptoms) living with this, and getting treatment for this, for years, without people knowing exactly what they were treating. And they’d have noticed it getting worse long, long before I had to stop eating solid food entirely.

All’s well that ends well I guess, but FFS they didn’t have to go through all those long painful steps of denial. I’m the patient, I’m the one who’s supposed to be in denial about my own illness, and I knew long before they did that things were far worse than they were willing to admit before screwing up on me lots of times by not listening to me or my DPA. (I can almost understand not listening to me on some things, because I was really out of it. But they hadn’t even noticed how out of it I was in many ways, so I’m not even sure that was the reason. Plus my DPA was telling them all this too and they didn’t listen to her until they found it all out for themselves.)

My stay could have probably been reduced by at least two or three weeks, though, if someone had taken the eating problems seriously from the beginning, known their stuff, and listened to us about my history. And then put together a plan to get me out of there on liquid nutrition and nausea meds. Rather than doing this bullshit where they’d try to take away the nausea meds over and over again, and then try to feed me solid food, and expect something to happen other than severe nausea and vomiting.

At least they finally acknowledged things. But it took them too long. If I’d been much weaker, speed could have been critical to my survival. By the end, they really got it, though. They were saying how if the final nausea med they tacked on didn’t work, they were probably going to have to put in a feeding tube (they put them somewhere that bypasses the stomach entirely) or do something else drastic or experimental. So I’m really glad it worked.

But that’s also telling me if that gets any worse, that sort of thing is where I might be headed. My DPA has been doing research and says they are beginning to make pacemakers for stomachs, so I could have a “bionic gut along with my bionic butt” in her words. (I have an implant in my butt that helps me pee.) She says if those get approved, that would probably be the best long-term option because they can reduce the need for nausea meds a little. But if things get worse and such things aren’t available, feeding tubes are still around. And while I don’t particularly want one (too many people I know with such things have had them get infected or have had to deal with hospitals that don’t understand them, or worse, people who think they constitute heroic measures to save their life and therefore refuse to use them if they get sick enough), I’m also not nearly as freaked out by them as most people seem to be. Probably because I’ve known so many people who had them, they just seem like a fact of life and a useful one if it allows you to get nutrition you wouldn’t always get. (They’re not either/or deals, either – people with gastroparesis tend to use them on days when they’re too nauseated to eat, and not use them if they can eat okay. Whether they have any days that they can eat okay depends on a lot of things, but the object is to get nutrition into the body by bypassing the stomach altogether.)

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