1:46pm February 26, 2013

Just so you know which nausea meds it takes me to keep me out of the hospital.

Phenergan.
Reglan.
Zofran.
Marinol.
Benadryl.
Ativan.
And possibly pyridostigmine, if it works anything like it works for my mom.

And this isn’t a once a day thing. At minimum I have to take these things at 9 am, 12 pm, 6 pm, 9 pm, 12 am, and 6 am. Often I actually have to take Benadryl and Zofran more often than the schedule says (so they give me a lot of extra stuff for that).

I need a lot more Reglan than I can take, but it causes such nasty movement disorder problems (akathisia and/or dystonia) that I can only take a much smaller dose than I need.

I have had dangerous reactions to Phenergan, but the Benadryl keeps it at bay. Benadryl is also a pretty good nausea med so they use it for that too. (Like a lot of my meds, it has more than one purpose. Some of my seizure meds are for both seizures and pain, for instance.)

If I miss even one of my regular scheduled med times, it takes me a week or more to recover. What put me in the hospital was the damn fucking test demanding I stop Reglan quite awhile beforehand and all other meds I couldn’t take past around 8 that night. So I missed many doses of Reglan and all meds at 9 pm, midnight, 6 am, 9 am, and noon.

Which really really fucking sucked.

This is why I want a stomach pacemaker. I’m on a lot of meds and they have a lot of side effects but its literally this or a feeding tube, is what they told me in the hospital. In fact I was on all of them but Marinol when they were about to use a feeding tube on me. Then they persuaded me (I was highly skeptical) to use Marinol, and I did, and it made the difference and I was able to keep down a liquid diet and things sort of worked.

But now every time anything gets thrown off a little I can end up in the hospital. So I’m completely anal about meds and about when I can and can’t eat. It’s just so damn easy to end up there, it wouldn’t take a lot of eating one too many Ensure or a few too few meds, to do it. Especially since I take seizure meds and you can’t just go off those every time you can’t keep them down. And if I can’t keep fucking nausea meds down, then I am in real trouble because the nausea spirals out of control so bad that I have to get it in an IV (or more likely a picc line because the amount of meds I take in the hospital kill IVs in my tiny veins fast, and I get very sick waiting for an IV nurse for hours and hours and missing meds).

So… Yeah. And it’s all this, not to eat a normal diet, but to be able to keep down between three and six Ensure a day. (I use either Ensure or Ensure Plus depending on my nausea level.) And one 8 oz. cup of soup broth from my friend so that I don’t forget what real food tastes like. (My friend is wonderful and can make soup out of any food. Then she gives me the broth.) And I am never not nauseated. And it always despite all the meds takes work not to throw up.

This disease is fucking ridiculous for a former emetophobe. Although at least the emetophobia has given me plenty of training in how not to throw up.

This isn’t like… The way some people have been treating me. They act like I went to the hospital last fall and came home and got better. And it’s not like that. My pneumonia got better (although I think it may have made my bronchiectasis permanently a little worse) but my gastroparesis is only getting worse over the years. All going there did was give me a way not to starve to death. And it’s really hard to convey this to people who think because I’m fat I must eat all the time. I can’t eat solid food at all and have trouble eating enough Ensure to maintain the weight my body seems to want to stay at. Losing forty pounds in a few weeks isn’t good just because you happen to be fat. And being fat is why it took them awhile of watching me never eat in the hospital to believe I hadn’t been eating for weeks beforehand. Then they went “OMG OMG you’re burning muscle OMG that’s bad!” No shit Sherlock. That was after they spent two weeks convinced I’d been eating before I got there, even though like all my food is prepared so my support workers saw every tiny bit of broth and grits I managed to choke down.

Before that hospitalization this fall I was on Zofran and Reglan already. Once they figured out it was probably gastroparesis, they added one of every nausea med they could think of. They also tried me on several antibiotics that are supposed to make your stomach move better, but they just made me sicker.

When I went to the hospital this fall I knew I’d be on all IV meds, so I used the opportunity to go off a bunch of meds that they weren’t giving me there, because I felt like I was on too many meds. But then in order to get out of there they gave me five meds I wasn’t on before. Which pissed me off. But it was that or a feeding tube. And feeding tubes get infected and shit, so I didn’t want that. So I agreed to take all their damn meds no matter how they make me feel. Which is mostly bad and confused. I’m sure they’ve made my cognitive impairment worse. But I couldn’t do anything else.

So… I don’t really go to the hospital for something temporary and recover from it. I go to the hospital for something that seems very permanent and progressive, and do my best to get well enough to go home. It scares me sometimes but I’d rather other people not pretend that I “get better” the way you get better from the flu. I only get like… good enough to go home and maintain a liquid diet.

And that’s why I’m considering the pacemaker very seriously. Because this only seems to get worse, and there’s only a certain amount of meds you can put into a body and have it stay okay. And feeding tubes have dangers of their own.

And this is a huge part of my life every single day whether I mention it or not, I’m constantly calculating what I can eat, what meds I need, that kind of thing, as well as fighting nausea through willpower and other techniques. It’s really important even though its kind of gross and not the sort of thing most people talk about.

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