I loathe that term.
In fact, I’m not a huge fan of “spoonie” or any other terms to describe someone with chronic disease. I don’t really know why, but I want to punch those terms in the junk.
The world is chock full of labels. I’m not really wanting to have a label. Ever.
I think it invalidates people who don’t fit in to that label.
Alas, I digress.
Astronauts. Have you ever had freeze dried ice cream? I have. It’s okay. It’s not ICE cream…to which I have a strong love affair. Ben & Jerry’s, specifically.
I digress again.
I was afforded the opportunity to hang with some really cool and well-loved people in my life who treated me to see the movie, “The Martian.” If you’ve seen it, I hope you enjoyed it as much as I did. It allowed me the time to escape from the asshat nature of my reality with some well-needed chuckles and laughs.
Specifically, the character’s quirky ability to look reality in the junk and punch it. Sarcasm and wit…cleverness and intelligence.
I’ve seen many a meme on the Web 2.0 going around for various topics…and his epic line of, ”I’m gonna have to science the shit out of this.” It’s not a spoiler. It’s. All. Over. The. Internet.
So, having had yet another episode of ongoing constrictive pericarditis coupled with systemic inflammation and a side of myocardial infarction this week…and the resulting dose of what I swear to gods was The Doctor equivalent of ”I’m sorry. I’m so, so sorry.”…I’m no further ahead today than I was last week. Or, last month. OR, last when-the-hell-ever.
I’m on a ridiculous concoction of meds aimed to reduce the inflammation quickly in the hopes that, y’know, my heart doesn’t up and give the middle finger salute to the Cosmos. Thing is, with Lupus…heart issues don’t need to come from arterial blockages or plaque or…whatever else people with heart disease are afflicted with.
Thing is, with Systemic Lupus Erythematosus, once it affects your internal organs…your clock comes with it’s own algorithm. One day it may tick slowly. Other days it might fly by like the blink of an eye. It’s worse than Facebook’s.
Lupus is an asshat.
Current standards of care has left most of my healthcare team struggling and running about hither and thither trying to find someone who might know their shit about Lupus. Timelines are thrown out like candy but sure as shit are less sweet to taste.
The feeling of the loss of control, coupled with the relationship loss of a partner, multiplied by the volume of the ”Everything.” I still have to manage on any given Sunday…and…the math simply makes me cry.
And, often very suddenly. Like, in the middle of grocery shopping. Or, waiting for the school bus. Roulette, really.
I have to do something. Anything. ALL of the Things. And, I have to try to figure this shit out, ASAP.
Reminds me of something.
Because, I don’t already have enough of a love affair with Google, we’re about to get a shit-ton closer.
Because, I simply have to try.
Because, I can.