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7:26am March 5, 2013

Ever since that first hospital stay when they began to suspect gastroparesis…

I’ve been stunned by “gastroparesis diets” because they’re supposedly reducing the amount of food you consume, and reduce bad things like fiber (vindicating for me I’ve been telling people for ten years that fiber causes my blockages doesn’t treat them) and fat. And I know those are good things.

But it also tells me how long I must have had this before diagnosis. Because by the time they diagnosed me I was living on broth and tiny servings of grits and often not even that. And then nothing but IV fluids for weeks and then finally diagnosed based on symptoms. (Finally got real testing this year, months later. Diagnosis amply confirmed.)

And I wonder.

If I was thin and nondisabled, would they have noticed earlier? Or at least done something? Looked for something? Before it got to the point where all I can eat is Ensure, thin soup broths, and Gatorade — and that while on a zillion nausea meds? Would they have listened as I told them I was eating fewer and fewer meals, with less and less food in them? When I had flare ups where I ate broth and grits only for months and lost tons of weight?

Were they thinking “Any weight loss is good if you’re fat?”

Were they thinking “You’ve just got one more symptom of probably a condition we already know exists?”

Even when I begged them to tell me why I couldn’t eat?

Did they think maybe it was good if that fat lady skipped meals every day?

I’m so mad and I don’t even know quite at what. Other than I know if they’d looked they could have found the gastroparesis before I stopped eating.

They did not even believe I’d stopped eating until they saw me never eat in the hospital where they could watch me. Saw me throwing up anyway. Saw me white faced and nauseated all day all night the day they tried to feed me a piece of toast.

Saw it take every type of nausea med they could give me, to keep down enough Boost (similar to Ensure) to avoid a feeding tube.

And now what?

How seriously will they take me when I talk to them about how it is for me now. All the effort it takes not to vomit even on all these meds. All the emetophobia skills. How serious will they take me when I beg to be considered at least a candidate for the Enterra pacemaker?

I’m only disabled. Do I matter enough yet?

Will they care about all the effort? It was so hard to explain in the hospital that white-knuckling to avoid vomiting is just about as bad as vomiting. They’d never even heard of someone using a nausea scale like a pain scale because to them you vomit or you don’t.

How fucking long will it take before they see it’s serious now. Not years from now. Now.

How do I get there from gastroparesis diets? Because they handed me a gastroparesis diet worksheet in the hospital when I couldn’t keep down water. All these complex meals I’d given up months ago. My gastroparesis diet on a good day is 3-6 Ensures and a ton of nausea meds.

How long will they stay behind the times, pretending things never got this severe until they are ready to handle my daily reality? At which point I probably won’t be eating at all even with the nausea meds.

But here’s to luck because today I’m going to do my damnedest to convince my doctor this is serious enough to get started looking for my best treatment options now. Not in the future.

And I’m scared. And the gastroparesis diet is a symbol of everything that scares me. It’s a symbol of too little, too late. Just like the damn eggs in the emptying test. Except the emptying test had a purpose. Handing me a paper about a solid food diet when I couldn’t yet handle water and would never get past Ensure even with every nausea med… no purpose beyond informing me how clueless they were about my body. And when they are that clueless it is scary because they expect me to do things I stopped being able to do ages ago.