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10:32am May 19, 2013

Okay so an update.

I already have signs of an infection. Or something. Yes I’m I serious. No I don’t know how it happens that fast. But I’m coughing up yellow phlegm that reeks to high heaven.

And I have the runs, with nasty cramps besides. Before I even started the antibiotics. How is this happening? The antibiotics are going to make me miserable. But they may also make me not dead. And that’s something. Especially given that this is feeling worse and worse so fast that it’s alarming. I hope it’s not going to be like last fall. I’m tired of the hospital.

And my doctor said everything would be fine, because I was on the feeding tube now and I wouldn’t need to be hospitalized so often. Ha! I sure hope I don’t need to be hospitalized so often, but clearly the feeding tube doesn’t fix everything. Which I knew it wouldn’t. It just makes things better, keeps me alive, it isn’t a miracle cure, and my gastroparesis has been so fast progressing this past year. I wonder if this stomach filling up too fast thing is a result of the next stage of the gastroparesis.

I also hope my quiet prediction isn’t going to come true. That I’ll end up needing a port. And I’ll need it installed in less than optimal circumstances. Because my doctor thought I wouldn’t need it, because the feeding tube would fix everything, and I wouldn’t need to go to the hospital anymore at all. He’s always optimistic beyond all reason. But hopefully I won’t need the port at all, let alone under such circumstances. It’s just when he said everything would be fine and I wouldn’t get any more infections at all, I didn’t believe him for a minute. The ability to drain my stomach doesn’t mean reflux is reduced to zero after all.

My staff person is out getting the antibiotics right now. Somehow the Safety Connections people got hold of a doctor who got hold of the pharmacy in record time. He called in a prescription for pills, but luckily the pharmacy is willing to switch it to liquid when they heard I’ve got a feeding tube.

Antibiotics are weird. No matter how they go into your body, it sucks. By mouth, they taste horrible. But in your feeding tube, they feel just as horrible as they taste by mouth. I was on clindamycin (I call it “dead cabbage meds” because it tastes like rotten cabbage) in the hospital, and they switched from oral to feeding tube and it made no difference. Meanwhile the only times I’ve gotten antibiotics IV, they’ve made me feel at least as bad if not worse. Especially when they give you the doses intended for dealing with skin infections. Oh right and I’ll possibly be on that dose soon, if they let me get my butt battery replaced next month given that I have a lung infection right now. But anyway, the times I’ve gotten skin infection doses, I literally felt like bits of my body were dying as it moved through my bloodstream. Hospitalized for pneumonia IV doses aren’t much better.

And actually I can kind of taste things they put in my intestines anyway. At least, I taste the weird fruity flavor of all the combined meds. I don’t know if that’s because of gas coming up through my intestines to my stomach and then burping, or what. All I know is the taste is real. I’ve never tasted the combined meds but it tastes the way staff say it smells.