Hopefully from here there's nowhere to go but up. Crack of dawn is always the coldest. Check this windchill. We are officially colder than Antarctica. Saw that roll through on my local weather on facebook.
Really thought my stats would calm down after I privatized my facebook feed 9 days ago, since facebook was my strongest traffic driver, but apparently that didn't deter anyone. And doing that definitely nailed down a solid steady number of notification hits, because I thought maybe those were extra pings from facebook redundancy 'safety' settings, but apparently not. Whoever you are, I'm holding up my coffee cup to you. I am now able to look at a naked core readership before I even link outside of the bloggersphere.
Okie doke, where were we. I happily jogged down a weird path this week while I let my head settle around real life, and I kinda need to bullet point and catch up.
MRI came back, confirmed the usual aging spine thing with a new twist, cervial hemangioma shows up in report now. No idea if it's just better reporting for something there all along or if it's new, but it is 'unremarkable'. Probably something they'll just keep an eye on...
Laying super still on a hard, flat MRI bed for 40 straight minutes was stupid hard on me over the weekend, between bodywide fibro flare and nerve compression was almost unable to walk for a few hours on Saturday, but thankfully coming back out of that.
Everyone around me keeps getting sick the last 2 months. I haven't yet been really sick like that. Hope I didn't just jinx myself. But if this is real, I've been sticking to raw cruciferous in salads, buncha cooked cruciferous like caramelized brussels sprouts with aged balsamic and parm, yogurt, and chicken. Little bit of cheese and occasional microwaved nachos in small portions. Lotta water. I don't drink anything else but coffee in the morning and a cup of tea in the evening. If diet has an effect on positive immune health, that's what's doing it for me. Stop eating your candy and ice cream and get off the cigs and booze, guys. I'm the puny one and here I am not sick.
My new 3x3 daily/weekly/monthly personal/home/internet chart is working really well. Syllabus doesn't seem to be doing it for me this winter, so I'm doing chart, ticcing off as I go. Tic chart, guys. In the 3rd grade I got gold, silver, blue, or red stars on a weekly chart for how fast I timed on a multiplication test. (A 'times' test.) In 5th grade I got a circle for every book I read to add to a bookworm. I had the second longest bookworm in the class, went around 3 walls. Charts are fun, but a lot of work to make. I use one sheet in a notebook. Upper third is a list for monthly, just need to see one tic beside each item. Middle third is a list for weekly and I divided into five sections across for all the weeks in the month, each section needs to have one tic in it for each item. Lower third is a list of daily stuff I do, and I don't bother ticcing it. I mostly do it anyway. It's there to remind me to stay on track. Concise, contained, at a glance. Each month I'll make a new page, and I can compare how I do to the months before.
I've been allowed to take over twitter duties for my fave minecraft server, now that I'm part of staff. I think it's a great way to divert off the twitter mess and pull a tight focus on something I love.
I need more squirrels in here.
I created a new playlist for positive vibes, to borrow a word from a friend. Music and visuals that calm the mind, as it were. I do this a lot and you guys never see it because I don't share that part of me that goes really deep into the quiet so I can float out of myself. I had a hard time sifting through and sorting out all my Pinky junk the last few years, and I feel like the best direction to go this year is just ignore the F* out of everybody, you know? Be me. Float away in bliss and enjoy my moments. I seem to have arrived to a new place, and I'm ready to take better baggage with me going forward. It's really hard to brain train into calm with chaos and challenge all around, but it's totally worth it. Let's see what I can find this year. :edit: Sorry, didn't realize I had this playlist on private, lol.
New season, new syllabus. (Syllabus post collection here.)
The world revolves around tiny people. It's subtle, and you probably don't notice it unless you have a tiny person in your life. For instance, Game of Thrones. Not tiny person viewing. If you have a yappy 4 year old in the house who can't sit through a 15 minute favorite cartoon, there is no way you're making it through Game of Thrones. May as well DVR that b*!c# and put a bag over your head, turn off twitter and facebook for 2 days and plug your ears at work, only to have someone casually BLURT THE MAIN SPOILER IN A GAME SERVER CHAT.
😂 I'm laughing. I laugh.
Yeah, if you don't have a tiny pet human in your life, you really don't have a clue just how much the world actually bends around them. This one recently flipped from daycare in the city to small town pre-K. She's like super savvy #handleallthethings to the staff, but a little fuzzy on the cool rural stuff the kids around here take for granted. Like buses. omg she thinks the school bus is the coolest ride ever invented in a theme park, for realz.
But this is about my new syllabus, not hers. Remember how I used to boing out of bed and hit the blog every morning? All that cool disciprin and focus and GET TO WORK!! ? That's gone. Well, except for today. Today I'm starting off with the Weather Channel because other kiddos being out of school for Harvey. Anyone else noticing that the mid-alphabet hurricanes kinda push for more attention than the other ends of the alphabet? Alphabet philosophy is an extra credit course this week.
This fall's syllabus is the most rigorously strict schedule I've ever had since 2006 because I'm winging around 3 other schedules and filling in the holes. There's is Papa's work, mama's work, and Bunny's school. It's my job to make sure there's no #foodfail, #laundryfail, or #pickingupBunnyfail. I'm pretty good at my job most of the time, but we've had a couple of #facepalm days in the food and laundry departments, so I might not be getting a + after my A even if I can keep my grade up. Right now I feel kind of at a B, but that's my personal dissonance problem and I try not to let it bother me.
For example, I'm having to balance OCD laundry compulsions with fibro flares, and I learned long ago that fibro flares are more controllable if I can let myself shut my eyes and just do stuff without extra steps. You know, like sorting. Just throw all that laundry in there! Don't worry if it's wadded up! Who cares if it's lights and darks and tiny things with big heavy things? Who cares if the sox don't all match back up after every single load? (You guys have no idea how hard that is on me...) (Srsly, bcuz everyone else in the house wears matchy sox.) (If you don't yet have context, see #PinkySox.) (That search thread goes back to January 2, 2015.)
One of our biggies this season is Communication. Our current skills include Hit and Miss, Forgot to Tell You, Nearly Mentioned It, and Oh Yeah. Tutoring from yours truly is on the fly as needed, and I'm sure the cinnamon thing will be a joke for years to come. They'll learn fast if they want me to shut up.
Part of my curriculum includes another round of intensive work on my nervous system challenges. 3 days a week focus on cervicocranial junk. Since I haven't smashed anyone's face into an info screen, my family is unaware of the big dealiness of this kind of stuff, and that I'm handling all their stuff on top of my stuff. They are unaware of how I feel about this being a last ditch effort before I wind back up on heavy meds and possibly big surgery that would complicate our lives really fast, since original cause miraculously didn't kill me. Their plates are very full and they're handling loads of stuff I thankfully don't have to handle myself. Like jobs. Car problems and car shopping. Paying bills. Somehow.
Today is a field trip to my massage therapist. I will be driving myself round trip about 30 miles, and I will have roughly 2 hours of 'free' time before I pick Bunny up from school. Then I will have (if the day remains typical), 3 hours of Bunny time. We're adapting into a new afternoon routine. Come home, put on play clothes and wash our hands, get yummy food started for supper, help with laundry (she loves laundry so far), and then settle into an hour of TV and an activity like matching or coloring. By the time other big people start arriving, I feel pretty done and do my best to escape to my room, where I set up a little tech center. I'm getting good at minecrafting in bed.
This weekend is extra credit. I'll continue watching the hurricane coverage and hope my other kiddos keep power and don't get any water damage. It'll be a long weekend for me.
Since I've covered Pain Levels 101 in other posts and even other blogs, I'll spare you that. I'm relying on sheer obsession to see me through this semester. I don't even care if I'm in in a fantasy world. Survival is priority. Cut to video!
I couldn't settle on one. I love them all. Click to get lost in snake memes.
Started this yesterday.
I finally ran into the Pinky Guerrero porn stuff. In Google search, the name Pinky Guerrero lists that particular site at the bottom of the 4th page. You'd think it would rank higher, but the 10 seconds I saw looks so mediocre that I nearly laughed. Page 1 is me and other Pinky alternating all the way down the page. She ranked very top spot, which is reasonable since a career is on the line, and I applaud that. I'd almost feel guilty enough to let my own Pinky stuff go except that then she'd be all alone with the Pinky porn stuff and no one stopping it from infiltrating her own ranking, probably landing it on page 2. What really cracks me up is a convo between me and @Vodstok ranking higher than the Pinky porn. I'm uber failing to tweet very well this spring, and that 3 1/2 year old convo still ranks higher than porn.
THAT cheered me up. I'm not exactly in a funk, just really tired, I think.
So yeah, I made a syllabus for the summer since I'm all spoonie jetsetter and doing the fail thing a little too regularly. You know, forget to wash a load of clothes after I specifically say I'm going to and then articles of clothing that we need are NOT cooperatively happy to make our worlds brighter, and my brain hammers me the rest of the day with YOU HAD ONE JOB. Entire days just fall right out of my brain. I'm not sure how Tuesday was suddenly Friday (but not Sunday?) even though I distinctly remember Wednesday and Thursday but they feel like last week, and really? Tomorrow is Saturday? Are you sure it's not Sunday?
I worked very hard for inch by inch progress over 5 years of physical therapy, and 2017 is this big backslide positioning itself at the top of a gravelly mountain and I can feel myself starting to slip. I got my arms back, and guess what, I'm losing arms again. I controlled that nasty sciatica flare and guess what, it's back. I regained so much freedom from neck pain and guess what, I can barely tolerate laying down again and I'm still exhausted enough to zonk right through 4 straight hours without an eyeblink (and no pills to help me do that). So I thought awhile and put all my skills and tools to work- assessed all the things, wrote out a care plan (I'm trained to assess and write out care plans, a nice thing to remember when I'm not too busy playing minecraft), and then wrote out a daily plan around that, basically segmentalized (blogger doesn't believe that's a real word) time slots for things that need to get done. These time slots include-
at the very top of the priority list, an hour of purposeful DOWN TIME with elevated feet, complete relaxation techniques, and lower core maintenance
an hour of basic chores around the house
an hour of mild activity not related to work of any kind, like walking, stretching, core work, nerve glossing
an hour of TV (I usually never watch TV during the day, so that pulls me away from the computer, which is notorious for spinal problems)
an hour of media presence maintenance, includes accounts and dotcoms maintenance
an hour of random organizing apart from chores, including money and calendar sync and spaceship space reallocation (clearing counters and drawers, etc), playlist rescues
That is 6 hours. That makes room for appointments and shopping if I have a day in town, a nap if I need one, handling extra stuff like a phone call, other unplanned things.
Right, you noticed minecraft isn't on the syllabus. 😋 I'm minimizing time on. I didn't realize until I discovered I could insert a stat bar into my blog header that I'm over 800 hours into the Mo Creatures server since it came back up at the beginning of the year. I think that counts afk time, and I do get up quite a bit while the launcher is still going, but it still looks pretty bad. It works out to over a solid month of game time, or if it were divided into 40 hour work weeks, that would be 20 weeks of logging in to work, or 5 months of work. I'm basically spending 40 hours a week logged into a game to keep me sane in between doubling my work and stress load this year. Once I realized that was happening, I automatically started putting time back into actual WORK. Well, you know what I mean. I don't get paid, but I pretend it's time investment toward a wealthy future. I can dream. Dreams are more fun when they're possible.
The really fun part of this dream is that if I can pull off what I hope I can, I've always wanted to buy into a Sonic franchise because I think it would be hella cool to say I own a Sonic. I've had the area picked out for years, and if it got approved I would be considered a major business developer in my area. I checked into requirement specs years ago, standard (when I last checked) is $1M in cash or collateral. I know it's possible to make that if I keep after what I'm building, but things are hard and I feel like I took a few gap months while I handled my brain playing trampoline.
I miss my old routine, but even before all the big changes this spring, I knew I was getting way too comfortable in my rut and becoming nonproductive. I may not be able to handle a lot of stuff, but I can still be productive every day. A bunch of little things over time adds up to a great big thing that can look pretty amazing. Learning to channel this into a process made me feel strong, and letting that slip back away is making me feel very crabby.
So focus is back on recovery and maintenance now that the med problems and pain control have finally been properly taken care of, and with maintenance comes the work again. I love working. I need to work. I dreadfully miss evening television and live tweeting, but I manage to catch up in between minutes here and there, and I'm still here, lurking around.
Now it's today.
Ok, got interrupted, lol. Bunny is my favorite whirlwind. Anyway, was about to say it's time for #Snarkstock2017 and I'd be lurking through the feed, but my evening was immediately capsized and then I realized I was fatigued enough to go to bed early and really SLEEP and maybe I'd better take advantage of that.
One of the requirements medicare has for equipment rental is keeping my sleep score at least 70% every night, and I very rarely slip down to something like 69%, so I'm winning the CPAP game, especially since 7 nights out of 14 are usually over 80% and at least 3 of those in a 2 week time span are over 90%. I haven't slept this much in YEARS. *Ilikeit.* I still can't imagine sleeping 8-10 hours a day like some of you insist is mandatory or your day sux, but the whole 4-6 hours on CPAP and sometimes another 2 hours after that sans mask is changing my universe into something a bit more congenial. That does NOT mean I'm easier to talk to or my mood swings have lessened. Those are their own challenges, tied to the horrors of existence on a cellular level, but at least sleeping more cuts down on my awareness of that.
Anyway, focusing back on the plan stuff, my original thesis during my Resource Planning degree was very ambitious. My family moved to the Ozarks when I was a teenager, and I've spent years next to Branson and fondly call it my back yard. This is a big tourism area, and my kids grew up working 'on park' (theme parks) and the kind of high traffic retail that comes with tourism. I remarried into a family that migrated from up north, so when I traveled north with Scott and saw Mall of America, THAT became my thesis goal, to write up a proposal for a second Mall of American in the Ozarks (which would have been a huge load of work, possibly leading to a lucrative career), so I obviously think big. I can't help it, I've always been like this. I should be on a star ship mapping galaxies. So it's not really a stretch for me to think it's possible to own a Sonic. It's not a stretch to hope I'll one day be able to travel a bit, fly across the pond, as they say. The hardest part is believing I can do this (whether it comes to pass or not) and continuing to work toward it, even though it's grueling and taking some time. I'd rather work toward something than sit back and let it go, bury myself in something and no one misses me when I'm gone because I was a whiny soul about how life is hard and pain sux and my lot in life is to suffer. That attitude can go blow.
My father-in-law next door is on hospice, very literally on last watch, and he got up this week, made it outside, and tried to kill a big snake. When I'm at death's door, I want to be just like that. I want to get up, haul myself out into danger, and kill the crap out of something scary.
Working on something, this is my fave mood music for a few things. I don't really share what's closest to the vest, but it's a long time coming and I've been hinting for awhile.
Not paid to link that, not a book reviewer, but as per my self-appointed syllabus homework this fall, I'm doing book reports.
Winter Morgan has written a number of Minecraft adventure story books, as listed on Amazon, available in paperbook, and both audio and Kindle, and at least one translated into German.
Zombie Invasion is targeted for the 7-12 age range, but meemaws just discovering Minecraft can also enjoy this simple, quick, yet tense story about a very excited Lucy getting ready to go to school at Minecraft Academy. She must leave familiar friends behind and meet new friends, but before they can settle into their new classes, the Academy is attacked and all the students must band together to discover who is griefing and setting mobs loose to terrorize the school. I can't reveal who it is because that is spoilers, but fortunately, Lucy happens to be in the wrong place at the wrong time to catch the vital clues, and manages to lead the students to victory even though they don't believe her at first.
As a meemaw on the second round of future spawn, lol, I think this is a great back to school story without a lot of complexity in the way. This could be beneficial to parents of younger children who feel a bit nervous and need some book time without too much added information. Lucy's worries about transitioning to a new environment and the impacts of social misunderstandings might even be great lead-ins for parents who would like for their children to discuss their own feelings a little more.
This week, thanks to my new syllabus and new multi-subject spirals, I've been getting more 'work' done. I just posted that book review, I got a couple of posts submitted to Autisable (plz to note I'm currently the featured writer, woot!), I got a key fandom webmaster's artwork info linked up between facebook and twitter (and it was retweeted by 2 celebrities, so woot! again), and all this during more rigorous physical therapy and Bunny stuff and getting my gaming organized and my house in order.
Just inserting a public reminder that anything I write up for anyone is my prerogative and not compensated in any form, and that I do what I can as I can. I've been contacted by several interested parties for 'services', none of which is paid (I turn down payment and funding offers when I get them), and I'm not writing on other people's agendas to become 'someone'. I already amsomeone, and because of that, I have world readership across a variety of blog and site hosts. Since I am unpaid and doing this with full disability (which I've never said like this anywhere else except right here right now on my personal Pinky blog), I refuse to feel guilty for not producing content. In fact, I've been pushed pretty hard behind the scenes a few times this year and purposely balked just because I was pushed, because that is how aspienado works. Some of you would be surprised who I've been ignoring.
The Walking Dead Live Tweet Review has come up with a few people. As driving web traffic goes, that was a really fun adventure, but a lot of work at the behest of other work I'd rather have gotten done. I enjoy live tweeting The Walking Dead, but I cannot currently say I'd be able to make a solid commitment because there's so much going on behind scenes here again that I'm not sure I'll even get TV access when I want it, even with 2 TVs in the house, plus I share router networking, and I'm not seeing a benefit yet to pumping more cash out of pocket into boosting up to business level wifi service for a free writing gig. I also purchased, out of pocket, a software program that allowed me to access shared files for a writing project, and I was feeling so rough at the time I should have just said no. I love that I'm offered sweet opportunities, and if my life were different I'd be all over this stuff, but I think if I want to get my own stuff going again, it's crucial that I learn to say no.
I've written before about one of my biggest conundrum's being the interruptions that keep me from getting more done faster, but I've also demonstrated that those interruptions and challenges are what make me who I am and my life more bearable as a valuable person on this planet. I see so many people sharing across social media how lonely they are, their lives are so empty and they are so sad, and guys, get out of those chairs and volunteer somewhere if you are needing real life real time social networking that badly. There are so many places that accept volunteers. I used to dream of being a volunteer in a big hospital as I got older, well, I can't even do that now, sadly, but at least I have family splatting my world silly and I don't resent that one bit. They are the only connection I have most of the time to real people since I don't work or get out much. Finding people to share real life with involves putting up with a bit of not perfect stuff and negotiating your way around all kinds of rubbing the wrong way, but in the end, it feels better having other warm bodies around than feeling like your place is so empty that you'd die if you didn't at least have a pet. Being good for other people is a great way to feel more fulfilled in this life.
Btw, if email subs suddenly get stray reruns showing up out of the blue, I'm tightening up tags, and sometimes hitting update queues those old posts for subscription service again. I'm currently noticing I've been using #amwriting, amwriting, and am writing tags, which would better be collected into the tag used most so far, which is #amwriting, and doing that eliminates excessive tags in my tag cloud, yay!
Sorry, got a little carried away. It's been a long night and might wind up being a long weekend, but I'm glad to hug my Bunny. We had a sleepover last night, and she wanted eggs...
I started this post yesterday. If you have depression and are easily triggered, please exercise truckloads of caution if you try sticking through this post, ok? I really went there.
From a post I made 4 years ago at janikabanks.xanga.com. The html is abysmally screwed, but I fixed what I could. Only one person has ever been told what I intend to do with this, so the private title is in the queue and one of the projects I'm working on.
My fave thing ever is pirates. I read everything I could get my hands on about pirates when I was a kid. Captain Blood by Rafael Sabatini captivated me at a pretty young age, and I absorbed the The Count of Monte Cristo by Dumas (j'adore Dumas!) almost through the pores in my skin. My fave ever Pirate movies are Blackbeard's Ghost, Yellowbeard, The Pirate Movie, Cutthroat Island, and the Pirates of the Caribbean series. My other fave 'ship' movie is the Horatio Hornblower series. I didn't grow up anywhere near an ocean or even a lake, but I have this kinda private thing about ships. I'm working on my own thing now, but a few years ago, this is the kind of stuff I liked doing.
Ok, hopefully that doesn't kill the wrap on the rest of the post. I had to go after those words heading clear out to my livingroom and wrestle them back into the corral. *preview* Ah, yes, working just fine now.
This week is already weird, and I desperately need to pull back into a touch base here, so let's just start off with my face feeling prickly and itchy. Nothing puffing up, yay! Just the nerves. The first time it ever happened I was in my late 20s and my doctor tried me on several different meds until we finally just gave up. The phantom itching is maddening, and after a few years of absentmindedly scratching around an eyebrow or beneath my lip or by my nose, a doctor commanded me to STOP before I wind up with cellulitis. Thank goodness it never got to that point! SHOULD YOU SCRATCH THAT ITCH? MAYBE NOT
So I switched back to beta blocker, histamine level spiked (yay, allergy season!), and now my face is all itchy and prickly for 'no reason', but it's all the same trigeminal spots I've always had to deal with, so apparently neurontin and cartia together impact my nervous system differently than neurontin and my original beta blocker dose together. Incidentally, I can't prove anything because my weight stayed steady this whole month, but I've worked really hard on the 1500 calorie thing, and I seems like whatever I lost got replaced by fluid retention. I swear I'm more jiggly now. Not cool.
Med changes, yo. At least I'm not craving brownies like last month. But srsly, where's the tranq gun for the maddening bursts of itchies sparkling up behind my eyeballs. Ok, enough of that. I'm very seriously thrilled it's not doing this down my throat. Those kinds of days are terrifying.
K, got on here to FOCUS. I need a super power point, hang on. (Coming back to this sentence during proofread and just shaking my head.)
Ok, Autisable went live today. I'm not staff, but I was one of the early contributors. Not paid. This is not for profit, I think. Anyway, Joel started this community of networked writers on Xanga before the big server move, and I've watched him survive and rebuild pretty much from scratch, and that inspired me more than just about anything to hang on, keep working on my own stuff. Again, for those of you who've never lost everything you've built in a server move, including specialized coding and a really excellent cutting edge mobile platform, the stress is unbelievable. I would compare it to an internet earthquake or hurricane or something, just everything wiped out and gone and having to pick up shreds and pieces and literally start over with a new foundation.
MY POINT. See what I mean, I'm super scattered because this itching is so distracting. Anyway, I've created a special Aspienado facebook account to share my Autisable submissions. Autisable is what inspired Aspienado to come out in public and start working on Existential Aspie. My tagline will hopefully be the preface to my book.
If you could go back in time and do one thing, what would it be? I would go back and give my mom a big hug and tell her everything is going to be ok. –Existential Aspie
I need to review a few other things going on. Organization!!! Thank goodness for back to school. Ok, went to my phone to find a pic and played on FB for 15 minutes. Here we go. This is my back to school purchase, along with a CD holder not pictured (because I have CDs scattered all over the house and the cases are getting destroyed and I keep losing CDs the way people lose their keys). I've pulled together a reading list for the year (sploit, I'll send you the books as I finish them, so don't buy them), and I've decided I need to get back to watching a show during the day while Scott's gone to keep me off minecraft when I go ditzy, because I've lost swaths of time 2 days in a row switching back to the beta blocker. I need to focus back on time awareness through the day, so I'm creating a new syllabus for myself, hopefully it'll get me through the holiday slide intact. (omg, I forgot about the time I discovered a search for 'holiday slide' landed me back on this post.) But yes, I do need to share actual real brain stimulation going in for all the people (including my psychologist) who wonder if I'm taking the broadcasting out part of my life too seriously. You people really have no idea what I actually do most of the time, so guess what, I'm giving myself book report assignments through the fall.
I think I shared my new backpack on twitter last month, hang on. Yes, here it is. Aspienado is really bad to get into ruts and use things till they're so messed up or messy that I'm a walking disaster, so freshening up the ol' bugout bag was a must. I treated myself since my last backpack was a $3 leftover after Walmart had been savaged and left nearly bare, and it was initially targeted for ten year old boys and really didn't hold that much. This one holds my whole house.
I've also liberated my new umbrella of its tag. I've been using really old and almost broken umbrellas since college (I cannot believe I've had that blue umbrella since the late 80s, THAT tells you a lot about my ruts right there, and the green one has to be nearly 10 years old itself), so when I saw this one in a pharmacy, of all places, on a rough day, I pointed to it and @bonenado totally got it for me. I'll have to take care of it because the entire handle is wooden and has an auto button to pop it out, very James Bond kind of thing. I know, some of you are questioning the whole going more feminine thing when I've been neutral for so long, but butterflies and roses have special significance in my family, and I really did have to have this. Plus there are pocket watches (me and time problems) and keys (key to the Lexx), so yeah. hello goodbye
Grasping that becoming Pinky to the world is how I am emotionally surviving isn't necessary to understand, but Bluejacky coming back out to play now is extremely significant. It means I'm healing.
At least in my heart and soul and mind. My body...? This is a hard summer guys. All I can do is just keep writing until I literally can't any more. It's too hard to tell if I can still hope for progress, because I'm sliding down so hard I'm not sure I can finish what I started. I keep telling myself hang in there 5 more years. I can make it 5 more years. I mean, it worked when my kids were in grade school and middle school, kept shooting for target dates and actually kept making them, and even though I honestly never dreamed I'd make it this long, I know the only road forward is harder than ever now. blinking in the light (the original reveal)
If you've never read Hinds' Feet on High Places, THAT. @bonenado and I had a really good talk over this last weekend. If I'm in final sprint (and it could be another ten years, I can't see the future), it will take everything I've got.
I'm just glad I'm getting all my head stuff worked out. I feel like I'm getting all my homework done on time. Assignment: Earth- You will occupy a body and learn to use this body to play well with others, share your toys, and learn wisdom. This will count toward your dissertation on Why We Are Not Mean To Each Other. Once you've satisfactorily completed this assignment, you will level up and move on to other things. Some call this the Hard Class, the pass or fail class, but think of it as extra credit and you'll be fine. You'll each be given Time and Space allotments to complete this assignment, and the only thing you'll be graded on is whether you manage to pick up on what becoming an autonomous being is all about. The only way to learn this is through experience, and you won't be able to take your notes with you. Good luck.
I need to be sweet and remind a few people that I'm not critical, ok? I'm just facing that I'm heading there. We don't know when or how soon, watch me make it to 80 now, right? But for those who are still pretty new to the real me, yes, this is actually how I have lived raising my kids, day to day, week to week, month to month, and year to year. I haven't taken a single thing for granted since the car accident.
But the race is on. And I wanna win.
All this writing encourages me, so if this is bothering you, you need to go do something else, ok? I'm *focusing*. Writing is just as athletic as any other sport. You plan, you practice, you assess, you practice some more, and you keep doing it and doing it until you're good enough to play hard enough to win. Sorry so long, but it's just that kind of day. Minecraft isn't helping right now. And I don't wanna talk about this on twitter and facebook. I only link it so it's easier for people to check on me if they want to. BACK TO SCHOOL. The syllabus construction. So among the reading challenges and rearranging my days so I'll be more aware of time and consequently more productive, I have several projects I want to finalize this year. One of my biggest challenges is this mobile office and the sudden interruptions. I've been working on organization for years, and it's amusingly hitting me that it's been so long that most of what I need to organize is truly useless now, and I can start throwing a lot of it away. When we were going through bankruptcy, we had to compile and keep tons of information, same thing again with my disability case, and between insurance changes and EOBs and all the junk mail on top of it, plus bank account stuff and keeping bills straight and forms filled out in timely manners, and then taxes and renewing car plates, and all of this being regularly poofed like leaf piles through birthdays and holidays and sick days/weeks and all kinds of other stuff, and then tech fail, omg you guys, I have lost my book contract in the shuffle so many times... Yes, both digital and hard copy.
But I have to keep my head on straight enough to remember to write groceries down on a list and then actually follow that list, and I'm failing simple list goals just running to Walmart, so of course I feel overwhelmed. But look at all the stuff I keep getting done. Look what I did this morning. I grabbed content I already had and used it to help promote a site announcement. I feel good about it, I feel like it helps point me back in the right direction, and I feel like the rest of my day is ok now because I spent a few minutes doing something useful. It doesn't take much, just a little bit every day. Five minutes. It really does add up over time.
So, August. My anniversary is tomorrow. I'm glad I wrote that, I got @bonenado a card and hid it, so now I'm going to go find it. I'm usually too scattered to even get a card, but I actually have one this year, and now it's out in time, instead of laying in a drawer, yay! Ha, it might be the last one he ever gets if I keep staying this scattered, though. You wouldn't believe how utterly ditzy I have felt the last 6 months.
*screaming gear change because that made me think of brain fog*
I was in my 20s when I was diagnosed, and I got that diagnosis within a month of seeing a doctor who fast tracked me to rheumatology because I'm such a severe case. They knew next to nothing back then, even though they already had criteria established on how to diagnose. I know from experience that getting back to a normal life might never be an option for me, because nothing we've ever tried has worked very long helping me pretend normal is even an option. Fibromyalgia Has Central Nervous System Origins
I got disability on the first try. What Does It Take For Fibromyalgia to Qualify As an Impairment Under the New Ruling
What I'm saying is that I'm one of the first patients in the medical field to be diagnosed so early and live this long with it, and they don't yet have a 'lifelong' definition for this kind of thing. They're talking about cases that last at least 3 months and still insisting there's a way to live a normal life, and I'm not seeing anything legally or medically definitive on someone who is 25 years in on something like this. There is no research on how people age through this. It's still only conjecture, and they're still studying it. Fibromyalgia linked to decreased brain connectivity
We've ruled out MS, AS, RA, and Lyme is still being considered a nonplayer even with antibodies. This article is only a year old. Fibromyalgia now considered as a lifelong central nervous system disorder
It's about defining what living a normal life actually means. I'm fighting to stay functional in my own home. I think for me, it's more about living a useful life. What can I still do when it seems like I can't do much at all? I can type words.
I have made it through at least 2 1/2 hours of what I call a really rough morning. I was kind of laughing with another snarkalec one day about how those of us in the most pain have such blow off phrases for how we feel, yet those of us who live like this totally get the code. I have a pain rating system that most people don't have a clue exists. The doctors use a 1-10 scale, and I insist I'm using the Princess Bride scale (not to 50!) in a 1-10 world, and on 'really nasty' days, that line runs right off the scale and keeps going around every wall in the room. If I'm 3 walls over, it's a shitty bad I'm in hell kind of pain day, and there's no way I'm going to talk about it beyond calling it a nasty pain day. There is just no way to convey context in a world where simply having a migraine and an emotional meltdown rates a 10 (and I do apologize, I don't mean to trivialize that at all, it's just I'm so experienced at that being a side order on a main dish of fibro). If I say in a doctor's office I'm at a 10, I'm either violently throwing up, unconscious, or spasmodically weeping with no way to console or comfort me, and believe me, I have scared ER doctors even after pain shots.
Pain scales are extremely relative and subjective, so I've had difficulty trying to convey meaning to what I'm attempting to communicate to a doctor who hears '10' from people calmly sitting in their chairs without even a facial flush going on. That has actually happened right beside me in a triage room. The woman saying it looked bored. My blood pressure was 193/110 and pain was nearly blinding me, and it just sounded so stupid for me to also say '10' right after her when I was obviously feeling so much worse. I once told a triage nurse 12 1/2 and she thought I was joking. You've no idea how badly I hate that 1-10 pain scale. That's why I invented the Princess Bride pain scale. If a doctor or nurse has seen the movie, they have more context, and then we can talk about me being in the 30-40 range on a decent day. Just because I'm able to function and smile doesn't mean my pain level is a 5. Actually crying driving in to appointments rates a solid 8, and from there it's minutiae to me. You know how on the earth timeline of 4 billion years humans have only existed in the last seconds before midnight? That kind of minutiae. So much pain context is crammed into those last 2 digits. I'm like if there can be 50 words for snow, I've got a hundred different phrases for particular pain levels if they're looking for context.
I can handle big loads of pain. Some days you feel like body slamming walls and trees trying to make it all shut up, other days you curl up in the dark and just keep everything really quiet. Those are rough days. Really rough days are me not caring if I break something and it's all I can do not to break windows out of sheer need to smash stuff just for distraction. I can totally see how people just lose it. Nasty days are just past that, where you if touch me, you die, and one look will wither your soul and you'll think I never loved you at all because it will be so awful. Really nasty days are hanging on in hurricane days, the kind of days where it's so bad that even breaking your legs or slicing yourself up barely ripples your attention, when even the words 'self harm' bring out maniacal laughter because it seems so tiny compared to what you're already going through. If I weren't in this amount of pain, I would totally be a self harmer. And I know several self harmers, so I'm serious saying this.
But the really worst days are the ones where it's not even that bad and your brain suddenly goes through a chemical dump, and there's not one thing on the planet you can distract yourself with that could keep you from doing something really stupid, so you reach out to hang on to other people and hope to God someone's available, because you cross that blurry line into unreal numbers territory, and you can't be sure what you're doing is really what is happening because your brain is so tired and so fried from all that overwhelming screaming you went through for days on end that nothing seems real any more when it finally quiets down a little bit.
~~~~~~~~~~~
I stopped there for awhile to get a lettuce and turkey wrap and some cheese. The prickles and itching are finally calming down. Really thought this post was going a different direction when I started it. Oh, well. I could delete all that or just let it stand. I'm sure I spoke for a lot of other people feeling frustrated with spoonie stuff, too.
I'm going to make it. I can do this. But I need a nap first. I feel like I just swept out my soul, and those crazy stacks of old EOBs will be next.
~~~~~~~~~~~~
Sometimes naps don't work at all. Since I'm breaking so far out of my ruts lately, I decided back to school means I'm getting new stuff in my house, too, so I laid there in the dark scrolling around my phone. I never do that. I so rarely shop at all, this really is breaking out big time for me. I burned out really bad after doing retail for 5 years, so I just never browse unless I really need something, like replacing a crockpot. I decided today I need new sheets. @bonenado bought the last set at least 2-3 years ago and I've never liked them. So now it's my turn to torture him, lol.
And I've been wanting one of these for years. I bet Bunny will think it's awesome.
Also looked up the tracking number yesterday on the sunglasses I ordered last month (I tweeted about them), yes, they're really coming from China. They're super cool if you want to check them out. I'm surprised how little I paid for such nice glasses, plus free shipping, so no idea how they're even making money. Well, I'm assuming they're as quality as they look on the site...
Oh, now I'm yawning. Going to go try this again.
~~~~~~~~~
Nope, just not one of those days. And then the second I get on moc, someone is getting banned for using xray, so it's a day for everybody, I guess.
Got a call to make an appointment for next week, totally forgot I was submitted last May to be a genetic candidate. I'm old enough now with enough family history to get a consult to see if I'm likely to get breast cancer. I go in next week, guess we'll see how that goes. I've been on and off alerts all over my body since my 20s, nothing ever shows up. Really don't know if I'd survive treatment very well, @bonenado already decided a few years ago if I ever test positive he's just going to take me to mayo or something. ~~~~~~~~~~~~
TODAY.
click for fun glitter graphics
Nothing special planned. Maybe I'll go pick up a couple of filet mignons and seasoned veggie grill mix and a tiny cheesecake for supper.
Got a little glum there yesterday, didn't we?
If you haven't figured out by now why I'm already a Doctor Strange fan, then you don't know me at all. It has nothing to do with Benny C because he's made tons of movies I've never seen and I don't go around watching all that just because he's in it. It also has nothing to do with Sherlock. Just for a second, imagine Stephen Hawking watching Doctor Strange. Yeah, that. Lotta people in this world gonna be latching onto this one. Continuing to use our brains to keep surviving when all else fails is what it's all about, kids, and you know I'm sharing the brain glitching part so some of you know we can still do this.
Aspienado in lifelong nerve fail. Wow, just summed my entire adult life up in 5 words.
Trip to town this morning for my annual date with another man on my anniversary. This is follow up with primary, thankfully early because they'll undoubtedly issue heat index warnings again. My head is way better now than Tuesday, so I'm adapting back to beta blocker just fine. He's not going to be happy about my blood pressure going back up a bit, but I think the thrill of me feeling like getting athletic shoes back on for some real exercise will outweigh the compulsion to hit a target number. I think once I get moving around more again I'll feel better about moving forward.
The college dreams have started again. +_+ I haven't been in a class in years, but it never fails, about this time of year I dream that I realize it's time for finals and start smashing down how freaked out I feel with an elaborate plan to fake my way through finals after missing classes and failing to do assignments for months. No idea why I dream like this since I was very studious in college and rarely failed to keep up, even if I had to miss a class. Tests don't frighten me. However, bad things have happened around finals weeks or test days and I've still always made it in (even after driving my pickup off a cloverleaf), so who knows. (I take spiders very seriously.)
click for gif
And the classes in my dreams are always so bizarre. I wake up surprised at the variety of strange and weird classes I seem to find out I'm taking and then panic. Last night's class involved a demo I missed (thank you, youtube, for that inspiring ant mold video- Casting a Fire Ant Colony with Molten Aluminum), you wouldn't believe the things my brain came up with about what I'd missed in that class and what would be on the test. I was relieved to wake up and find out 1- I'm old and not in college, and 2- coffee was all set to make. Life is simple on the 'outside' here. Inside my head during the night is a complicated mess of way too much stuff.
We lost electric around 6:30 last night and it never came back on until after all the good TV was over. That meant there was nothing else to do but be in bed by 7 (for me, I was already cold, only in the 50s all this week), and that is just way too much time to leave a mind open to free associating all the gobbledygook from the day before. No wonder people put so much stock in runaway community-wide panic attacks over witches and stuff before they had electricity. Nowadays you get a minecraft witch throwing bottles of potions at you and stagger around trying to eat something before you die without falling off a cliff or into a river, and if you get really lucky you start getting shot at with arrows and attacked by zombies while you're staggering around, and when you die and respawn and come back you find out the zombies took off with some of your cool stuff that you worked so hard for and the skeleton grabbed some of your armor to wear. The router was so blinky yesterday before the power even went out that I fell into a cave and got stuck down there, and every time I tried to do something I timed out, so I just played around with lining up torches under piles of gravel and watching the piles fall and bust. Fast and easy way to harvest gravel, and I use it extensively around lava, so there you go.
From thecreator- "Almost looks like a vampire in the second one. He could kill people just by looking at them."
All the same, I think I need to make a special list today. And I need to decide on one day a week to bar myself from Jawn or something. And I need to make a new home syllabus and block off some hours into regular time slots for certain activities. I was doing really well with that for several years, kinda fell apart the last few months. Since I'm making such big leaps with both physical and psychological therapies though, I haven't been too self recriminatory about it. Sometimes you gotta just shake it all up and see how things fall, get the game board going a whole new way with new methods and a revised agenda.
Jawn is my laptop, in case you're new and don't know. He's the brain extension I've always dreamed of. Pinky Robot and Jawn irl.
:edit: Just a passing note. I am so very disappointed in someone for stooping to using tactics that she used to rigorously get after "friends" for, especially a friend that went away and never came back.
First ban on my Lexxperience FB page this morning, idiot with a header full of pigs in bonnets and a feed full of really bad Muslim sex cartoons. Not tolerating crap, people. Added a 'review posts' setting so my page won't get spammed. In case some of you Lexx fans don't know, I've been deleting and banning determined haters for YEARS. One year in my Xanga past, someone created multiple accounts over and over and over just to keep pasting very lengthy diatribes about how I was going to hell (pick a religion and insert here, I've heard it ALL), and I just don't think it's cute when a brand new facebook account with a suspiciously familiar name (recent 'friend'?) starts following my cool stuff out of the blue to start religious and political wars. I did my best not to let stuff get ugly on twitter, but dayam if that crap starts on facebook. I have no problemo reporting haters.
Back to Pinky stuff. Been thinking for a couple of weeks about writing up a new syllabus. My old one is outdated. My pattern has changed. We're not having regular weekly Bunny visits like we used to now that she's getting older (I'm sure that'll pick back up a bit this summer), and I'm also running out the door lots more this month taking care of my own stuff.
It'll hafta start from the ground up with a whole new Plan again, plus resetting my short term and long term goals before I can put a work schedule back into place. Lately, all my writing work has been spontaneous and haphazard. I miss my daily discipline that I had in place like clockwork for several years. My output isn't as driven as it used to be. 4 a.m. minecraft is taking place over early morning writing, which might actually be a good thing on days I have to run out the door. Maybe I'll get back to less wordy on Pinky and more wordy on my writing projects. At any rate, braincation needs to be over now.
All this month I'll be running out the door 3 times a week, mostly mornings, so my morning workout time may need rescheduling. I'm usually doing my workout by 7 or 8 a.m.
In spite of all the extra activity suddenly starting back up, I still seem to be staying caught up with chores around the house, which means my energy level is up and my depression level is still down a bit, yay.
Still on top of bills and billing and scheduling more billing. Usually late winter is all about @bonenado helping me float through financially, but this winter I've juggled ALL THE THINGS and not dropped the ball once. This is probably the first winter that's ever happened, so huge high five and go me on that one. I went mildly glitchy, but I never hit my annual brain fail.
Skip this post. It's just one of those long me thinking aloud posts, wrapping a few brain coils around organizational jetsetting. Apparently there is a jetsetter cat club that is NSFW, so for the love of God, do NOT put that into your search bar at work. Wo... O_O Was looking for 'pink cat high class' hoping to find a rich cat in first class (I'm still pre-coffee) and ran into this.
I think I'm getting the hang of jetsetting again. Just gotta block off time slots like the good old days when I had work and school. I feel like I'm sketching out a syllabus, except mine is broken into blocks that, you tell me, is this better or worse than American Revolutionary History? I had to retake that one, but I aced college algebra on the first try, so I guess it's a matter of taste.
Grind Chores
Spend half to one hour every day grinding through internet chores that include but are not limited to site maintenance, data organization, data mining, data warehousing, and salvage and repair. Examples- moving stuff off my phone to pinterest since phone fail and I no can haz app now, moving downloads off my hard drive to flash drives before lappy crashes for good, properly sourcing my content (the internet is my file cabinet), etc, so much more boring stuff you guys never see. It's called 'grind' for a very good reason, what I call the dull stuff that requires office management certification, which I don't have, but is crucial to my overall continuing growth. This is the stuff I ramble on about all the time and you guys probably think I'm nuts to be doing it in the first place, but it's the core to staying public, just like core PT sustains my physical mobility and flexibility. Until I can afford staff, I have to give my own self cards on Boss's Day. (You people who assume I'm maniacally obsessed with myself thinking I actually spent time pulling that 'staff' link together, all I had to do was put 'janika pinky secretary' in the search bar. I own the webs, guys. Here's the link that was right above it. You're welcome.) (I told you guys I know what I'm doing crawling back to the top of the search mountain.) (I'm a #Lexxpert, as first dubbed by @WormholeRiders in 2013.)
WORK
This is the actual book writing stuff and involves my whole house. Some obsessive days eat up anywhere from 4-8 hours (sometimes insane middle of the night hours), other days are a few minutes of notes. Includes research, drafting, edit, proofing (includes more research in proper language usage). Not limited to tech. I currently have over 40 spirals indexed. I need an office caddy. Get it? Office catty....
Workouts
One hour per day following PT home instructions and regular exercise unless I'm in flare up. Challenges include maintaining and growing mobility and flexibility (sitting too long destroys me) and controlling pain. Included is monitoring proper hydration, nutrition, and rest.
Actual housework
Dishes, laundry, meals, bathrooms, floors, etc. I layer this time slot over all the previous work slots because I can't sit very long and have to get up and move around constantly. Everything you read that I've written has lots of behind the scenes action going on. If you're imagining me sitting around all day with a keyboard, you are drastically mistaken. One year I quite literally stood through all my keyboarding and moved around between every single sentence. Pain has driven me to put my thoughts outside my head for years as an alternative to, I'll be very blunt, self harm and suicide, because meds just couldn't save me. I'm not the only person on the planet who has said blogging saved my life.
Holiday Slide
I've talked about this phenomena before, where I have so much incoming with birthdays, anniversaries, and holidays every single week now up through New Year's on top of usually having at least one or two months booked up with physical therapy and whatever else is happening (this year there is the roof thing) that I hit a wall at some point and can no longer function in real time, and the rest slides by me in a daze, so I have to organize ALL THE THINGS really early and usually try to have everything listed, labeled, and all set to auto-go by the end of September, because by the middle of October it's just over, like I wrote in this post last fall. Holiday Slide planning includes prepurchasing ALL THE FOOD and freezing ALL THE GOODIES ahead in the form of doughs and batters (yes, the homemade stuffing is frozen ahead). I don't usually get involved with the gifting because @bonenado loves getting all over that. bracing for the airbag
Contingencies
Or what I call interruptions. Yes, exactly like this, which popped up right in the middle of that last sentence.
These include weather warnings, tech fail, real life, Bunny days, appointments, you know- the plethora of constant pull away from working at home. Some of you might be thinking I'm making a big deal out of over planning, others of you who've been stuck at home for awhile are thanking God someone is breaking it down and showing you how to do it. My first year being stuck at home after two decades of college and work history was really depressing because I suddenly had no direction, no one scheduling my time, nothing to keep me on any kind of track with the rest of the world still rolling around in orbit through the seasons. I had to learn to self motivate, self orient, and self discipline, and that through glitchy brain and body fail. It's hard. I know. And it seems like just about the time I get a good rhythm going, everything blows up and I've got more punches to roll with. Well, that's what bosses DO. They steer the ships through the hurricanes. (Embedding was disabled for that vid, sorry. It's Jack Sparrow. Go watch it right now. I'll wait till you get back.) Yes, AND the long stretches of expanse in between. I learned everything I know about rebuilding a blog empire from Captain Jack Sparrow. I'm good with live blogging. I'm also really good at recharging, or what I like to call braincations, a concept intro'd to me many years ago by this cool chick. I didn't get it back then because I was dumb, but the light bulb eventually came on full blast, so thanks to her for that.
Six course blocks is a pretty busy schedule. I rarely watch TV during the day, rarely go shopping, almost never talk on the phone. Sometimes I take little jaunts off into extra credit.
Her; or Post Within a Post, Thoughts Behind Thoughts
I'm not going to fix that link, just click what you can barely see so you can do the same thing. I hope this is making a new paragraph. Nope I have to go into html and manually insert the breaks, Thank goodness it at least wraps itself.
Testing. Ok P for paragraph works. CSS styling clashing with blogger 'enter' override for br line break. Reason I have to test and hit preview is because none of this is showing up in 'compose' because blogger isn't set up to show how it'll look in 'compose'. omg #facepalm just lost all my Ps from an override, ok let me try br. Nope, P works if I close my P tags in conjunction with the enter key. Excellent. (Never give up, never surrender!)
So, here we go.
I've said a few times I think about her every single day. I've never done that with another person in my whole life. I wonder if I can embed a vid in a table. Hang on.
There we go, that's been my jam while I figure this out. Yes, Benedict dancing helps. Ug, inserting that vid wiped all the Ps out, though, I had to reinsert them.
I mean, other than my kids, right? Or @bonenado. People drop right out of my head because I'm busy. I can't help it. It's like I know they're out there but I don't feel a need to connect in real time unless I'm freaking out on a highway or something and need someone to talk me through a nasty anxiety attack while I'm driving. I've gone months without a word to my dad or sibs, even on facebook. I go weeks without hearing my own kiddo's voice, sometimes days in between texts. Super aspie's so aspie. It's like time has no meaning and I don't feel it passing, so I don't miss anyone much.
Except her. I've never known what to make of that. All I know is that she was the key to changing everything, and everything I've done and become since then has been about wrapping not just my brain, but my heart and soul around integrating a thought process that was previously so alien to me that I couldn't make a leap to connect some crucial dots in my emotional development. Somehow, because of her and everything that happened, I was able to make that leap across what felt like a Chasm of Abyss (may as well nod to the game) during a very long Dark Night of the Soul. I had suffered like that only two other times, but had never been able to make the leap. Until Her.
One more vid, I think. Some of you have figured out by now what I'm doing. Aaaaand I just lost all my Ps in the table again because of this vid. Iframes really suck for style override. If this post winks out, it's me slamming html back into it.
