let's get lost at sea

October 9, 2013

What if right after I posted a veritable novella about how I'm like, so much better now!!1!!!, even though I had been feeling better for many weeks, I immediately felt like crap again within the hour, ha ha ha ha great joke universe! I probably didn't pray hard enough or ever. I like Skrillex sometimes, please picket my funeral.

Upon reflection, I have identified the following key points:

My life is not an episode of House. I mean it is, in the respect where they can't seem to figure out what specifically is wrong with me, but it isn't in the respect where it's highly unlikely anyone is going to bound into the room and shout out "the answer," if there ever is an answer, which I deeply suspect there may not be. If there was anything we learned from Jude's lead poisoning debacle, it's that sometimes doctors don't have the answer, or can't find it, or get bored or tired or fall asleep and give up.

I wanted having my mirena removed to be the cure that would "fix" me, like magical wizard magic from wizard peoples, dear reader, and this would all be over and I would be okay again. I am coming to realize that getting better might be a lot more complicated than I was initially led to believe, and it may or may not at some point include a diagnosis I can actually flip to in a dictionary and tell people, "This is what's wrong with me." For crap's sake, they aren't even sure if it was related to the mirena at all or if it was just covering up something else entirely.

This is not tv. The point where someone sits me down and solves all my problems in a single paragraph of dialog may never come. That has been difficult for me to accept, but it's important because I have to stop putting my life on hold waiting for "the answer" to drop into my lap. It doesn't really matter what it is, or if anyone can explain it, does it? I suspect that it's not going to up and leave tomorrow if I don't fill out a nametag, but that would be cool. Feel free to let yourself go with that feeling.

I am sick. In some respects it's difficult to give myself permission to say I'm really "sick." I don't have any visible symptoms, and they haven't given me much of an answer in terms of what this could be or how we're going to treat it. It took me six months to even be able to describe what was happening, and it's not particularly easy to explain. At the same time, I am clearly not okay. Is dull, continuous pain "sick?" Is having your organs feel weird "sick?"

My probably vastly displaced sense of privacy has led me to not mention the real depth of what's going on to anyone, even Jon, the majority of the time other than to say, "I do not feel well." because who the hell wants to hear about that? I have soldiered on, even though I think it's pretty clear chronic pain has made a devastated ruin of my sanity. I think you only get to call it official medical 'chronic pain' if it lasts an entire calendar year, but let me assure you that six months is plenty of time for all work and no play to make Jack a dull boy.

I am sick. I'm cautious about sharing statements like that, because they're relatively concrete, personal, and complaining about it is a purposeless activity. I am not interested in feeling pressured to update people about my "status," or listening to theories about what your cousin's brother's coworker heard about consuming the air from toxic cornflakes.

Case and point, such as it is, I have not mentioned a single whisper of this to anyone at my employ, because it's both difficult to explain, involves "lady stuff," and who cares. I go to my doctor's appointments on my lunch hour and I wait until I drive all the way home at night to take my pain medication. Is this reasonable? Probably not. It is probably "okay" to tell people I am "sick." Even if I am not barfing or sneezing or having surgery. Even if it is difficult to explain and makes no sense. Okay, well, I'm on the fence about that part. Maybe I'll think about it, but let's be honest, I probably won't.

I am limited. I tire easily and recover slowly. I am taking narcotics, which I will soon run out of. Last night when I got home I picked up a bottle of water from the counter to take my medicine and promptly fountained a beautiful rainbow of mist up into the air, which sprinkled down over the room like delicate golden fairy dust, because that water bottle was filled with gin. Why do I have a water bottle full of gin on my kitchen counter? I don't know. You should probably be more careful.

I have good days and bad days — or good hours and bad hours, respectively — in no particular order. On the best days I can feel entirely active and healthy, which makes it all the more difficult to explain to people that anything is wrong when things turn left and I want to crawl in a hole and wait for the sweet kiss of death to carry me away. Are you still "sick" if today you feel better and sometime in the next week or ten minutes you won't? Discuss.

The rate at which I can flip back and forth between perfectly fine and murderously awful is alarmingly Quick Draw McGraw, who is a horrible disease in and of his own right, and it leaves me in a lurch trying to process how I feel about the whole thing at any given moment when it's liable to change just as quickly. I have had entire weeks where I felt okay, only to end with me unceremoniously slumped in the front seat of my car, sobbing my eyes out when I suddenly feel not right again. It's an awful sort of trick to play, and I've become mistrustful of feeling "better" for very long.

This morning, however, I am feeling especially well. I'm just going to sit here for a moment and drink my coffee and be really, really happy. And that's okay.

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