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-Personal blog for Janika Banks.
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Saturday, February 11, 2017

en su bolsillo


So packing 6 pounds on in 2 weeks flat has been very uncomfortable. It came on so easy upping the dose, not coming back off as I'm lowering the dose. I worked so hard already getting that off and *bam*, one medication, there it all goes. I have an extra pound of fluid in each of my limbs, in my gut, and all up and down my back, whee. Guys, that's nearly a small bowling ball.

Telling spoonies to 'lose some weight so you'll feel better' is a cruel joke, and I hope none of you ever says that to anyone. All it takes is a medication during a desperate pain crisis to nuke that one right out of the water.

And then my dad goes on about meds being bad for you anyway, and I'm all like ok, I know...

So here come the sensations filtering in again. If you've ever been nipped by a goose, you'll totally get what I mean when I say there's a spot in my back that suddenly feels nipped so hard by a goose that I actually flinch or jump when it shoots across there.

And that's just one spot. Imagine everything from the top of your neck and face down to your feet being caressed with lightning shocks.

I'll tell you what, though, sure beats being so zombied up that I can barely think and can't sleep. At least I've started interacting a little again. I spent years living like that, zombied up and crumbling deeper and deeper into a black pit of losing function. Since I'm dosing back down, I may try tapering off through the winter and see if the pain is any worse just being off the lower dose. Sometimes the best med in the world is simple context.

For new readers, this started just before my 20s and no positive dx (yet, keeping fingers cross it stays that way) for anything beyond fibro, stenosis, and trigeminal. I'm a Lymie and was ejected from a vehicle decades ago, plus my family is genetic for soft tissue 'arthritis'. I used to hug the interwebs through the long, dark nights, and now I'm the one hacking the path through the jungle with a headlamp. I'm on the leading cutting edge of all the new stuff they're learning about aging through fibro, which, as it's turning out, is NOT pretty. Years ago it was all yeah, you hurt but you can live with it, your prognosis isn't that bad. Now it's turning into ok, maybe we didn't realize how bad this is and your life is going to suck while you slowly curl up and die. I've been the guinea pig for decades, and I'm still here to tell you that you can weigh your options, choose what you will or won't tolerate, and take control of how the rest of your life will go.


Your best friend is patience. You can even become friends with depression. You can dwell on relative deprivation or you can focus on what you can still do right now in this moment.

I've been enjoying a multiplayer minecraft server through this, and that for me has been a real life saver through this mess. I let go of trying to keep up, I focused on my own needs and basic functions around my house, I touch base with key people every day so I don't go under feeling alone, and I PLAY.

I know some of you are still trying to work and raise kids. I'm a meemaw now. I made it through all that. You can, too. Each day, one at a time, don't let your sadness and bitterness take you under. Winning is all about seeing those kids grow up, seeing their little ones. If you don't have kids and maybe your families truly suck, find new people to take care of. Taking care of others is what keeps us going. Take care of pets, kids, older gens, whoever, but find a way to take care of people. Some of the people in multiplayer are disabled but are there every day to help kids who are having bad days enjoy some distraction.

I'm still  not able to get back out on the medias very much yet, but I'm still here, and the depression I was slipping into is being ramped back into survival beating this stupid med dosing back down.

In the meantime, I have mined nearly 4K blocks of coal, 119 diamonds, farmed 8K watermelon slices, crafted 176 arrows, baked 140 loaves of bread, and cooked up 2K clay bricks. And way more other stuff. Last night I busted open 3 double chests of stone brick blocks and just gave it all away to people working on a castle. It certainly hasn't been boring. I discovered I own a spider spawner on one of my properties, another property is filthy rich with obsidian, magma, and ores, and a third little retirement claim is slowly turning into owning a whole mountain. I have a horse named Westley now. I really need to build a stable before the big cats kill him. I've got a tiger and a panther nearly right on top of my house.


By the way, anyone saying I need to get up and move around- I have been moving around nearly nonstop for 20 years because the pain has been too bad to SIT. Being zombied on the gabapentin was bliss to sit and actually *enjoy* a game without having to stand up and move around every 10-20 minutes. You guys who take for granted that you can sit for an hour straight doing something without even thinking about sitting, let's have a moment of appreciation.

And honestly, that's probably why I'll outlive most of you. Doctors tell me I'm doing everything *right* because I'm so miserable trying to 'treat' for pain. My worst days are when I get the most done, because I am so driven out of a chair that the only peace I find is in constantly moving and doing something to keep me distracted. All the same, it was really nice being able to sit around for a couple of weeks being a zombie.

Also, lurking through the chat drama has been pretty funny. A staff member banned himself night before last, I was cracking up.

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