From fear to hope

Something that is a regular part of my life, and has been for all twenty-eight plus years of it, is being in and out of doctor’s offices. Everything is intertwined and, as my primary care doctor put it, “Well, your body doesn’t always read the textbook.”  Which, you know, while it’s a difficult pill to swallow at least I’m unique, right?

But what I find most terrifying out of all my medical issues isn’t what I have. While a lot of them suck horrifically – NF1, fibromyalgia, and over a dozen more – what I hate even more is the disorders that we don’t know why I have. We don’t know why I randomly can’t eat for a week, and every attempt ends in me puking. We don’t know why while I’m in these flares I can barely leave my bed and I’m not even strong enough to play video games. We don’t know why despite throwing every nausea medication in the book at it, it’s still not enough.

Because, you see, I would rather have something scary that I know what it is, then something mild and easily that I don’t know. The unknown is one of the scariest parts of being medically fragile. Knowing, at least, would give me a definitive answer.

For now, I live every day in fear. For now, I live in fear that my stomach will stage a mutiny again and I’ll be back into the vicious cycle of the stomach issues from hell. For now, I live in terror that the GI will brush me off again. I worry and worry and worry that every test will turn up normal and we’re back to square one.

But this doesn’t mean I’ve given up hope. I know there’s a diagnosis out there for me. I know there’s an answer to why I’m like this. And even though right now it feels like there’s no hope whatsoever, I know there’s still a flicker of hope out there. I know that one day, my fears will melt into hope again and I will have the answers I need for my medical crap.


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