oooOOOOooooo did I just use a cuss in a blog post title?
Fucking right I did. I’ve been unquestionably absent from posting for what seems like EONS…and I’m ready to delve back into writing about the going’s on of my made-for-tv-movie kind’o’life.
2016 is a big bag of smashed assholes.
But…the journey continues.
“But…you’re in remission! Isn’t that a great thing?”
Well, HELLS YEAH, baby!!! Even got my septum pierced in a celebratory *middle fingers salute* to everything Lupus. Or, maybe some kind of mid-life crisis thing. Whichever. Wish it’d been a car, though. 😉
Do you know what the most difficult part of my remission is? Betcha can’t…
I tell you: It’s trying to manage the range of emotions from last year’s impending death sentence from all things fucktarded resulting from the general failing of everything in my body…to having NOT the general failing of everything.
I can’t even begin to articulate what preparing for death is like, preparing my children, and then the 180 degree TSN Turning Point of having it…gone.
It’s supposed to be a celebration!
I even shouted out to the Cosmos that I was doing my own version of the Futterwacken!!! (okay, in reality I just looked like a spastic goat)
IT IS. It really, really is…but friends…the range of emotions in such a short period of time births the Brain Trolls. They’re ugly. They surpass The Black Dog in girth and depth.
Part of me wants nothing to do with anything “health” or “Lupus”.
Part of me wants to change the goddamn world to help people know there is HOPE, no matter the challenge.
The treatment sucked. Hard. Like, getting those first sips out of a freshly made mocha-choco-vodka-valium…milkshake. *shifty eyes*
So, I spent the summer camping and attending festivals and carpe-ing the shit out of my diem. Because, I can.
There is still “Colour!” and “Cosmos” and “Sharks” and everything I love to help me through the necessary escapism that is the chaos of my reality. Oh!! And video games. I still certainly suck at playing them, but by the gods are they a reprieve.
Then there are the “Floofs”…guinea pigs. I shit you not: These little buggers bring me so much “Happy” I take back every single time I ever called them “weird” or told my daughter, “We will never, EVER, have guinea pigs.”
I *am* the Crazy Guinea Pig lady. Oh, yes. Guinea Everything.
I’ll do up a post about all of our amazing little floofs and floofless-es on another day…because I could write a novella about how much they’ve been a therapy for my sore spirit.
Why the sore spirit?
Because the thing is, and I don’t know if this happens to most people who experience remission (so please comment and let me know!!)…but…I started to enjoy *not* focusing on Everything Lupus. Sure, I still have Type II and fibromyalgia…but Lupus? Shelved that shit. I Futterwackened. RELIEF.
BUT: I’ve had so many episodes of pericarditis and so many years of systemic inflammation that my heart muscle has various patches of damaged tissue. I continue to have a very challenging home life managing All The Things. While I TOTALLY proclaim myself a fucking clever genius, Pinterest did help me come up with The Hub (please read it if you’re struggling to manage eleventy-billion kids & a home…It does work) and The Hub has been a lifesaver…but the chaos of my reality is SO very much more than a tidied house.
Anyhoooooo…the Brain Trolls are putting up quite a fight as of late, given my latest set of infarctions, the first of which landed me in hospital from which I promptly signed myself out. I know. I KNOW. I really do KNOW. Yes, I’m scared and yes I know what I should do…but years of habitually having to manage The Everything is quite a difficult level of control to acquiesce, no matter the reason.
I have a counselor, I promise you. And, meds. LOTS of meds. But there are some days…I…don’t…want…to…anymore. Hard.
That’s where keeping my mind busy and “Do.”-ing and hanging with my floofs is helping me relax and open my coping skills toolkit.
So, I keep busy doing what every bat-shit crazy woman does:
Make a banner.
Because I can.
Oh! And I also made hay sacks.
Thank you, Pinterest. You’re my new BFF.
It may seem…insignificant. I assure you, the more I can utilize my passions, the easier it is for me to envelope the chaos of my reality within a normal standard…not one blown so exaggerated I can’t even. Literally. And, not in the “I need a Starbucks” can’t even.
I mean, get up. Do. Breathe.
It’s a journey. A continued crawl towards anything and everything that helps slay Trolls along the way.
If you’re on a journey, please know you’re not alone. Never, ever, alone. Just make the choice to not be quiet at some point so people can help or just listen, where necessary.
Tell me what you do for self care…