I guess March started off pretty good. I wasn't fast enough to catch whether it was a bot spam thing or a linkback, and no idea where it happened. I'm slacking off quite a bit this year on the stat stuff, but it's still nice to catch it once in awhile.
This despite sliding down a slippery depression slope, right. It cheered me up a bit. I could see myself actually repelling people for about a week there.
One of the interesting turns being taken in stats is the more dismal I become in general, the more I'm getting hit worldwide by people who start digging through the tags. I'm seeing a number of one-off trails, like an IP here and there making single hits through a variety of pages all bearing the same tag. Real readers.
We are important to each other. We are the real life other people can see happening behind the 'news' being broadcast and scripted across the webs. We are the ones living our days, the ones problem solving our ways through the scary messes we see in the news all around us. We need to be there for each other behind all that. Just keep living and talking and finding things to love and enjoy. No matter how dark it gets around me, there will always be something I will notice that I can think about, distract myself from fear and anxiety.
One thing I notice and talk about sometimes is now synchronized most of us are on social medias. We go through the same mood swings almost all at the same time, and if you look back through timestamps, you can see this really is a pattern. I know a lot of it is weather related, some of it is time of year related (the February slump after holidays and before the last school term surge is brutal), and definitely 'news' related if you watch too much chain yanking on broadcasts or in feeds.
I couldn't help noticing there was a single day a few days ago that several people I know plummeted into the depths and said very nearly identical phrases relating to depression and anxiety. Since I get around so much social media (super lurker) and hang out in real time on a game server with players from around the world, I am able to see all the little pings going off at the same time. I wish I had thought to screenshot through that entire day, it would have made for a very interesting study.
There is some controversy over 5G coming, and whether that will allow 'mind control'. Even when your tech is turned off, it still monitors and relays info. Your GPS signal, if there is location software in your tech, is always ON, unless you pull the battery out. Most tech nowadays have internal batteries to keep atomic time sync, but what else? Microwaves will blink like clocks when power goes out, but our phones and televisions and game consoles don't do that. When we pick them back up, they are already synced and ready to go.
And as I type this, my cursor is moving around of its own free will, which is very interesting considering I have remote share turned off. Hang on a sec.
Ok. You guys have no idea how often I reboot on any given day. And my phone, too. I started noticing around 2009 that I got particular attention from Langley in my stats if I used certain keywords, because only political opinion posts got those hits. I've toyed with visibility and search engines and stats for years and I see some interesting things. You'd think Oh, I'm just a little blogger, who would even care, right. Well, someone cares. It's gotten uber ridiculous with Pinky blog, and I had to train myself to just ignore it, although I have some outstanding screenshots of geolocations that would probably drop a few jaws. I'm not bragging at all saying that, and I think it would be unwise of me to share those screenshots on a public blog. All I can say is, some of those locations are top notch conspiracy level areas, and I can nail it down to where on the street or under a tree a few of these are because someone didn't have a clue how to use a proxy. At all. Like it was a brand new device straight out of a package and full location disclosure was pure green light. I don't know if that's on purpose or not, but yeah, I got the hint. One post in particular, yes. It unnerved me so badly I made that post private for awhile, and I just got hammered after that.
You know what? I don't care. If anything mysterious ever happens to me, that only proves I was right. That is all. If nothing happens, then nothing happens. I'm probably on a list, but I'm pretty sure a lot of us are.
Anyway, back to where I was going with this. There's been some concern about 5G.
Ok, stick with me for a second remembering a few things. On Ghost Hunters one of the first things they would do trying to debunk a haunting would be to check electrical fields with an EMF meter, right, because everyone knows an electrical field over a certain power level can mess with human emotional and physical states, causing anxiety and nausea and even worse. Imagine focusing an EM field very specifically. If you are carrying around tech that continually monitors your location and even measures and transmits your movements (Fitbit, lol), how easy would it be to use that field to affect your personal state of being? Some are concerned about suggestive programming, like this.
Lol, scared yet? I'm not trying to scare you, but if you aren't aware this is very real and has been going on awhile, you need to wake up a little.
Back to here and now. I'm watching anxiety and depression levels spike up and down across medias almost in a rhythm for awhile, and this latest one a few days ago was unreal because I noticed so many people said nearly identical phrases within 2-3 hours of each other across several medias in a variety of areas, and almost to the hour expressed later that they felt better. I noticed I went through the same sensations, as well, the palpable tension for awhile and then the relief later being a bit more noticeable than my usual mood swings. I don't want to immediately jump on the idea that seemed like an experimental test run of something, but I will say that was just weird.
If you are having a bad day and don't know what to do about it, it's always a good idea to touch base with someone to keep some balance. I myself heavily use tech to keep distant people around me through the day. However, I also think it might be a good idea to take short tech breaks. Do restarts and reboots. Walk away and go do a few chores here and there. Get a little distance and see if you feel better. Take some cleansing breaths while you stretch a little bit, tidy up a room, think about arranging the next meal, take care of a kid or a pet, stuff like that, and refresh your physical vitality. Hydrate while you're at it.
If you notice anxiety and/or depression cycles hit while you are holding or right next to tech, immediately put it down and move away from it. I'm not saying be afraid of it, I'm just saying control your moment. I always use tech every day, it's part of my life and probably always will be. I've been making jokes about being in line for the brain chip for years. However, unless you have something like a parent on hospice or some other reason to keep a phone on, turn it off while you sleep. Log off your computer at least once a day, especially if you're away from the house or sleeping. Just turn it off.
Your body has a natural electrical biorhythm that needs its own default cycle to be healthy. Every day we interrupt our biorhythms with electrical fields. We get used to low grade function and not moving around a whole lot, but over time our bodies and minds degrade. We are aging faster. We live in physical bodies on this world, and they are made to keep moving around.
I think the scariest part of all of this is the idea that tech giants worth billions can influence how we use our brains en masse, and possibly even directly impact our activities. When I see so many people I care about across such a wide amount of distance hovering over their tech saying nearly identical phrases at nearly the same time, what am I supposed to think?
Changing my wallpapers. That one above clicks out if you like it.
If anyone is really playing attention, vs just freaking out on twitter and facebook, it looks like martial law was finally put into writing just before Christmas, and there are all kinds of interpretations going on about what's going to happen next. Well, we are preparing to go to big war again (per people we know being called back into training), and I've been saying for years we'll eventually be living in a nationalized police state. Those of you who watch scifi have seen how this works in shows like Continuum, so it's not a new idea at all, and even part of our entertainment. I've been saying for years that TV prepares our minds for change by slipping in ideas over and over, and scifi is a major vehicle for that. Stuff doesn't happen overnight and most people's lives won't really change that much (just like all the other incremental changes we've gone through over the decades that we've already forgotten about), and life will go on. How we want to continue is up to us. I personally don't want to be a big drag, so I try to stay focused on my own microcosm, which includes my physical and mental health. How can I be good for people? That is a question I ask every day, and every day I find a way to be good for someone. I may not be able to control the big scary stuff, but I can certainly paint the smaller stuff around me any color I want.
There are no good guys up there in the scary stuff. The only 'sides' involve millennia-long bloodlines that control the world moneys and the people they front as governments. We are already living everyday lives underneath a broiling civil war above us, and you can guess at what's going on all you want but you'll never see the answers until you understand the biggest picture. Having answers won't change a single thing in your life. Obsessing and worrying and ranting will only bring people down all around you and make you more depressed. You are a 'prole', you always have been, and you always will be, even if you think you are white collar in an upper crust job. You will always be one of the cattle beneath the biggest picture. You mean nothing more than that, so you may as well calm down and create your own meaning.
I've gone through my own evolution over the years. I've come back from soul-draining illness, I've wrestled the blackest depressions and floated around in gurgly bubbly euphoria, I've been through brain crash and world crash and server crash and life crash and very real nasty car crash. I've lurked through the depths of despair on the webs, watching people like me finding ways to survive. And we all want more. Who am I ? What do I want? World of Spin
2016 was hard. I slipped backward into more depression and lost my focus and my discipline and 2017 started off with uber pain and I spent 6 months going through med fails, and finally wound up in an unrelated surgery last month. Through most of 2017, my life has been upside down helping other other people adjust to life crash/change, and there is nothing like everything in your world being fail and upside down to sift out what you really WANT when things start calming back down a little.
I want my focus back. I've got my discipline, big time. I grew wealthy on a game server through constant internet glitch, and that was a focus distraction through depression from real life that I was accidentally thriving through just running to keep up with daily chore grind in all my pain, and I come to the close of the year with not just a will of steel, but a diamond tipped edge on discipline. I look around me and see a jumble of junk because that's what life is like with a 4 year old, but I look inside of me and see everything in order, all my junk sorted and organized and ready for action because I've been so focused on surviving real life daily/weekly crisis management through real life pain management, and I'm getting goooooood.
Now, to turn all that back around and apply it to my original focus out here. I am equipped like I never was before, bulked up in metaphorical armor and weaponized with god enchants like infinity power punch flame smite knockback looting efficiency fortune feather-falling depth-strider projectile-protection blast thorns. I'm so good in game that I'm like lemme finish chopping this tree first while mobs bite and sting me from all sides, then casually turn around and pop them all into little green dots that roll up into my experience and level me up some more.
If we could see that happening in real life, all the crap and junk would feel more fun, wouldn't it? We'd be able to see our advancements and achievements even if everything was feeling junked up and stupid. We'd be able to show other people our metaphorical coolness and say Hey, wanna band up and go conquer? I need a badass adventure for a cool power boost.
And that's what life is. On our dumbest days we can't see that we are having badass adventures. We are conquering the toughest demons and leveling up all kinds of little dots we can't see while we wade through stupidity and sad. We feel alone while other people all around us are doing the exact same thing.
We're not alone. And we are badass because we're still here.
2018, here I come. Throw snakes and spiders at me and I'll give a hearty laugh. Show me an impossible mountain and I'll say Hang on, lemme get my gear. Glitch my flying pet out of existence in mid air and I'll go find another one and level it up. You can't stop me.
I failed to mention yesterday that @bonenado forgot to grab his big go cup of coffee heading out the door to work, so that was coffee fail 3 days in a row around here. I'm tentatively holding off on saying today is back to normal until I get confirmation.
Now that I'm sleeping way better, I rarely remember my dreams. Sometimes, though, I still remember one here or there quite vividly, and I'm clearly not done with my puzzle yet. I point blank showed myself something in my dream last night and I don't get it this morning, so I think there is still something way in my head I haven't pulled out and dealt with yet.
In the meantime, I guess those red hair blue eye things that go around facebook are erroneous.
This looks really cool, but I'm not ready to make the time for it. I'm still too obsessive to get involved yet. You can click that to go try it if you want.
Today is my Batman's birthday!!! Would you believe I don't have a pic of his mama when she turned four? That was one of my roughest adult years ever, the year I stopped sleeping and leapt wildly off a cliff where no one could follow. My memories are still sketchy.
I know some of you out there feel like parenthood fail and you've got little kiddos exponentially ramping that guilt, but I survived to tell you that 1- fail isn't permanent, 2- people don't hate you but they are worried and that kind of stresses everyone out more, and 3- everyone surviving fail can become wonderfully close, loving, and forgiving. I'm here to see my Batman turn four, and that is important.
Be here to see your futures, ok? Life gets good again, gets sweet and kind in all the right places, and probably the more so because we learn where not to step next time.
p.s. Everyone goes through that parenthood fail feeling anyway. I think it's part of the learning annex course on this planet.
You know it's been awhile since you've done stuff when everything in your system prompts 2-step verification. I'm busy.
Little bit late for Valentine's, but just so y'all know, my Halloween sox have all bitten the dust. I wear them nonstop year round, so that's not surprising.
Totes duked it out with CPAP last night. I imagine it's still the med withdrawal, but the panic attacks were incredible. Aside from an eye twitching, I seem to be ok today. Well, no I'm not. #transparency Let's just say I'm sort of wobbly ok at the moment coming back down off a med that had me not only super stoned, but puffed me up with 6 pounds of fluid in 2 weeks flat, and I didn't tell you guys about the week my gums were oozing blood. Yeah. Aside from a very nice cessation of neverending nerve stabs and constant itching (it's like living with wasp stings and poison ivy with no visible causes, simply put), for me personally, it turned into the med from hell at 900mg total dosed through the day because it's super seductive and rather delicate getting away from it. I might've been able to hold at 600mg per day, but by the time I was going back down to that, it was like being in systems crash and I had to prioritize a reset. *I* control me, not a med. I can choose to use a med to help me control, but when it wrests control away, f* that. I've been there. There is no rescue from meds except cleaning off them. I've seen how prescriptions pile up until there are so many to control side effects other meds are inducing that the original reason for being on meds in the first place gets utterly lost, and the patient floats away in a hellish kind of slo-mo Titanic. If you are one of those people and desperate for more info, comb my blogs at spaz and Bluejacky (some posts might be private, that blog kinda crashed). My survival plan goes back to 2008, and it works. Yes, working on a survival manual. Sorry it's taking so long.
So since January 19, I've gone from tripling that med in a less than a week, being stoned outa my mind for a week, and then knocking it back by a third over another week, and then I had to get permission a second time and a new script just to ramp back down to original dose, which is still in progress, down to 400mg now, shooting for 300mg (original dose was 100mg 3Xday), actually hoping to just get completely back off while I'm at it and take a real break from it so I can get some context back. If a low dose is no longer working because it creates addiction dose monitoring and I keep hovering between not really getting help vs going off a cliff, I need to rethink this med. And it's not one of those pills you can just cut in half, it's in capsule form and not easily titrated like I've done with xanax. Imagine getting off caffeine, nicotine, and codeine all at once. Yeah, like that. The suck is strong with this one because it very strongly affects certain brain receptors. I'm a mess and a half.
But I've lost a pound of that stupid fluid, finally. 5 more to go... ðŸ˜
And I know it's there if it ever gets so bad that I'm really that desperate, but this little experiment has prompted my survival instinct, and I'm more redetermined and recharged back out of that stupid depression I was sinking into through the holidays. One could argue that maybe I just needed to get stoned, but I would argue back that putting on 6 pounds in such a short time doing it is reason enough alone to do a risk assessment on pros and cons of this med on overall health. I *get* how depression works, I've lived with depression most of my life, pills are not fun toys, and me spinning out of control again emotionally is not a good thing. This went beyond crying jags into weepy meltdowns that lasted several hours at a time, and I think I mentioned I was starting to scare people. I should probably let a few people know right here that I'm kind of back out of that part now, it has scaled way down.
I feel like I'm still barely braining, though, and the only way I'm able to keep moving forward is running a playlist. Thank goodness I made this, it really is helping, got a shower and preparing for a recap meeting on the phone, have chicken thawing for supper, and pulling a grocery list together because we are OUT of stuff and starting to scrape the backs of shelves. So far today is the most capable I've felt in weeks, and I feel like I'm brain crawling like a slug. Actually, I may have just used up the tiny quota I had available today, I should stop this and go stare at a wall before that phone call catches me flatfooted in uber stupid mode.
One of the things I haven't been talking about is what it feels like.
You know that springy sparkle all through your spine and out your nerves that you get when all your hairs go up? Like when something is really creepy, spooky, weird...
Over the last week I have felt that probably 60 times, and it's getting really old. Oh, nothing, just sitting around watching tv or playing minecraft and there we go, over and over like someone's flipping on a light switch to the Griswold house. How's it now? Switch flipped back off. Oops, back on again. Anything? Back off again.
I've been through this before, just not on such a large scale. Nerve healing feels like an electrical crew working on lines and fuses, testing links and current flow, shutting off to work some more, flipping it all on to testtesttest running diagnostics, ok off again... And lately it's my entire body doing that spooky hair thing, starting at the base of my neck and traveling down my spine, arms, and legs to every inch of skin on my body. It doesn't hurt at all at first, but after several of those full blown on-off diagnostics back to back in a row, it actually does start hurting and really wears me out. Then it all stops for awhile until the crew is ready to test the lines again, and then I get a few minutes of that all over again. Several days of that now.
Part of the physical therapy is on my main nerve trunk from base of skull to about mid back. Starting out before these last couple of rounds, I was not aware that parts of the right side of my back are numb, and that the maddening itchy parts in the middle and left side of my back were from nerves sputtering from the agony of years of being pinched off. As we've very slowly been working up and down my spine in between processes, trading back and forth between parasympathetic pressure point and ASTYM week by week, some of the pressure is being relieved and whole nerve branches are lighting back up like strings of Christmas tree lights. I can feel my fingertips now. I can feel the ulnar nerve from my neck down my entire left arm now. I can feel all kinds of muscles around my ribs now. The maddening nonstop itching is letting up and moving further down as the nerve trunk works on healing.
I've about reached my tolerance limit, though. It's time to stop and rest again. Today was my last big parasympathetic therapy. I can tell it's working. Over several weeks I've been able to reduce my pain med from every other day to every third day, and I'm able to use my arms more again. I'm also sleeping better than ever when I do actually sleep, which is more often than not now.
Not sure how, but I seem to be ahead on my $$ sync this month by about $2. Between possible math errors, a new autopay and billing recode, another autopay I forgot about, closing another autopay out, and shutting my eyes to run a debit charge, for awhile it kinda looked like I'd be about $100 in the hole. Something inside my brain still knows how to do math. It's just not sharing it consciously with me.
The sweet roller coaster ride that is the glitchy brain life. It's reminding me of Imaginearum. <<-- post I wrote about watching the movie. "A dark dream. A dying memory. A hidden regret. One last ride."
I am inside a semi-broken brain. Every day I get around obstacles and figure out mazes. I know I'm not alone because I've been contacted so many times through the years by others living with some kind of glitch, be it from schizophrenia, PTSD, concussion injury, MS, strokes, a range of depressions and spectrums. Watching our families around us through the fissures and cracks and glitches...
We know it's hard for you guys. We're frustrated that we make it hard for you, whether we can see it or not, understand it or not.
Say stuff while you can. Write while you can still spell, talk while you can speak, love while you can still remember. Never put off for later what you might lose any moment in an accident or medical injury.
Holidays are hard. Not all of us can pick up phones and call hotlines, but some of us can still reach out and hold a hand, maybe nod. The more lost you get in the glitch, the more meaningful every word and movement becomes reaching through.
Keep reaching through. Reach out, reach in, reach toward.
Conking out for 10 hours after one meets for consultation in a sleep study clinic isn't just irony, it's sorcery. >=l Pretty sure they sprinkled some kind of essence or dust on me when my back was turned. I think 10 hours is like a once in 5 years phenomenon for me.
That being said, I can barely move or think. Sorcery. It's like witch potion in minecraft.
I asked about and was told there are 2 main kinds of apnea, one does affect REM (vivid dream recall) and starts in the brain, so you can imagine I'm extremely curious to see whether they can catch that happening since I've been doing this since I was a small child with the dream recall, and going through entire years being terrified of sleeping, so I pushed my insomnia to the limits by remaining awake and alert at all costs even to the point of drinking other people under the table or being medicated out my eyeballs. This last couple of years are the first I've SLEPT consistently and fairly well in nearly my whole life.
That being said-
Last night I was an aging kitchen and laundry (it felt like) overseer in a large gentleman's Chinese brothel, and I'm not talking like in the movies. This was real grunge behind the scenes stuff, very realistic. I knew the entire building inside and out, I knew all the people who worked there, and even though I wasn't a boss, I was respected because I kept order.
But this evening there wasn't order. A recently gone famous pop artist had just walked into the restaurant area with his new very young model bride, and one of the slightly aging performers (background dancer/singer type) in really pretty costuming suddenly threw an absolute fit, screaming how could he, how could he turn to someone else after all the nasty kinds of sex he had made her do with him (during which she evidently must've fallen in love with him), and since I was walking through checking table setting perfection and closest to her, I walked up to where she was nearly now screaming in the pop star's face (everyone's eyes were really big, bad public behavior, bad taste, bad luck all around, no one had ever gunned the place up but didn't mean it wouldn't happen) and put my arm around her waist and then walked between them turning her around. I didn't even look at anyone else, just her like she was the only one in the world and guided her away sobbing, sweetly reminding her that we don't break the rules here, and it's ok if clients do what they want, got her escorted into another area and handed her off, all the while she's having this emotional breakdown and I knew she was ruined now, and they'd either kill her or finish breaking her for some other kind of work. The best I could do was remove her from my floor before I would get in trouble, too, just being in her vicinity.
And then I woke up.
My psychologist is concerned that I might have some kind of REM apnea. I'm concerned about a side article called Is Brain Injury in Obstructive Sleep Apnea Reversible? My worst brain fail came during 6 horrible weeks of NOT sleeping during the worst headache I ever had in my life (nothing shows up on CT or MRI), and then 'all' that happened was bell's palsy and all that got blown off. I've been recovering from particular function glitches ever since, like being able to do simple math. Incidentally, several brain scans over time have only ever showed natural aging. Absolutely nothing else. (:edit: Forgot about empty sella, but that was present at birth.) Since my mom had hundreds of TIAs before she started having the really big strokes (she was an insomniac, too), you can imagine my interest in all this.
Back to the dream! Srsly, another seemingly 'not me' experience out of the blue, like I was somewhere else being someone else with no other connection that I can see to real life, TV, minecraft, reading something, overhearing convos, nothing. I guess the experiment will be to 1- confirm REM disruption, 2- attempt to treat, 3- see if I stop remembering dreams. My sleep study is set up for October. Sadly, no one cares about studying whether I'm actually experiencing someone else in another time and place. We're supposed to stay in our own quantum localities, after all, right? It's not unusual for us to fuzz out and be somewhere else, apparently. The problem is tuning our brains back to ourselves. We need to be here and now. We need to learn to be holistically healthy individuals while we are here on this earth in these lives because we have things to do here and now that only we can do.
I've been able to go through deeper sleeping more in the last 2 years than in many years before, cumulatively speaking. I know it's possible for humans to survive severe sleep deprivation, because I've done it, but I'm a mess. However it started and whatever the underlying cause (brain wave disruption is the likeliest for long term, plus now probably aging into regular apnea), I have never been able to sleep normally like I'm supposed to, and because of that I've successfully learned other coping mechanisms, like positive imaging, self hypnotic meditation, free associating (very necessary to 'let go' so the brain can mimic the dream cycle while awake), lucid dreaming (different from free associating), stuff like that. But as I'm getting older, it's getting harder to control this so that I don't wind up 'spacing out' so hard like when I'm driving, because that's way too dangerous. I arrive places and have no memory of how I even got there, sometimes no clue what day it is or why I'm even there in the first place.
I have a feeling I'm not at all alone, and stuff like this could probably explain numerous traffic accidents that people have. Since I've already rolled a car and experienced the brutal pain and have spent my life recovering and in pain, I'm probably more aggressively alert than a lot of drivers out there, and I very seriously do NOT ever want to feel that kind of experience again, so I think my brain gets stuck in the hyper vigilant part of fight or flight, and that's probably where my anxiety attacks in traffic come from, major PTSD stuff.
Anyway, they splashed some kind of potion on me or something yesterday, and now it's taking me 2 hours already to deal with getting my brain on and my body flexible enough to do a few things. I really don't like sleeping hard...
Music like this helps. Sometimes it's about the only way to calm my mind down. I might play this on my phone at the sleep clinic while I'm going to sleep.
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.
Woke up from a dream where I was cranky with a lab tech about some kind of medical testing, but even I could tell my head was a mess (she definitely thought so and was getting very impatient with me) and that I wasn't making sense between partial sedation and trying to logically figure out the odd maze of wassappenin in my head because none of the things I was 'remembering' were correct, so I was busy lining up actual buildings and streets and which doctor might have sent me there with the fake stuff in my dream. I've done this several times lately, like I go into this weird aggressive anti-dream state where I refuse to play along with my own free associating.
Waking up didn't help and I bumped around the house in slo-mo for about 30 minutes before I could get a line of thought straight. I am reeeeeaallyy missing the days where I used to boing out of bed like a Tigger and my brain was super on and 4 a.m. was gogogo time. I hope this isn't becoming my new normal, because the last few weeks have been a bit of a drag getting going in the mornings.
The weird thing is I'm suddenly orienting really well in minecraft, relying less on the grid readout and recognizing landmarks and directions more often. This in turn translates to real time mental mapping skills while I'm driving. For several years I've been dealing with sudden 'drops' in continuity, not remembering which Walmart I was in, even which town (lotta outlying around our metro in this area), sometimes what street I'm driving on, like my internal recognition software blinks out or something. I don't know if you guys ever have problems with an NVidia card suddenly blanking on your monitor and then recovering, it's almost like that in my head, just suddenly 'lose' orientation to time and space around me. Since it's been going on for so many years and no one's ever found anything obviously wrong with my head, no one seems to be worried about it, so I really don't worry either. BUT. Alla sudden, after months of running around and tunneling and flying on my horse, I clicked into spacetime orientation and haven't been needing to check the grid readout so often, and dang if that isn't coinciding with not being so glitchy through my days in general.
Guys, I think I'm rebuilding my brain. And it really could be the beta blocker, like my doctor thought. The experiment continues.
New tech, yay! Funny story. Scott couldn't get internet on his desktop, so I configured the new Netgear X8 on Jawn, and everything was fine until Mr. Bossy was determined to pull the firmware onto his own desktop after he found out from tech support that his wifi card is outdated and killed the internet. SO, he had to hard wire directly into it, and THEN all the internet was back. So we have to hardwire an outdated computer into this awesome new super expensive tech to get wireless tech in our house...
Yeah, let that sink in. I live with Fred Flintstone. We lock horns over control issues. He'll never let me forget the time I crashed a hard drive trying to rip off a song from a wormy scifi site that I could have gotten for 99 cents on itunes, and I'll never let him forget the time he wrecked up all our software with a malware download just because it had a desktop icon that looked like a private detective with a cool hat. Either way, you fly with us, prepare for hard landings, cuz that's how we roll.
I either need to go back to bed or find food, because this coffee isn't doing a thing. Not sure yet if I can handle twitter today, and my psychologist says steering clear of triggers is fine. Baby steps is better than falling off cliffs since I'm on my own. I feel bad, but I just can't go there today.
my new theater next to my evil conference room and shark tank
Looking at 4:28 a.m. wondering where in the world all the days went because it was just 4/20...
I made the executive decision last night to break my evening zyrtec in half. Yesterday's point of saturation created mildly dissonant leaps into alternate dimensions, and I'm losing track of the important stuff, like suddenly realizing yesterday that my automatic withdrawals for my part D and F plans might still be screwed by the 4/19 thing and then promptly forgetting it.
I'm barely even out on the medias and still managed to tick someone off yesterday, so I'm going to keep sticking to minecraft or something. I dreamed last night we could make real life stuff with minecraft, and I had made a nice RV like rich people have when they do travel vacations, filled it full of neat stuff, and then other people showed up one day and totally griefed it, just tore it apart and took everything. All my clothes were gone, my debit card had been in one of the minecraft bureau drawers in one of the little bedrooms, so that was gone, all the food was gone, and I was just stuck with everything gone and no way to replace it. I had to start all over from scratch. Since I've literally gone through that on blogs and had to start all over again on social medias, the dream doesn't surprise me. I'm sure the debit card part came from having to update my info across all those accounts.
I think this is the most off track I've been since I came back out in 2012. Every month has been a real grind through something. I keep reminding myself I still haven't made any money mixups for months now (almost a year), which is really big. Whatever ground I feel like I'm losing is still progress.
Statcounter says I've just passed in the first 4 months of this year on Pinky blog what I got in the whole year of 2014, which is interesting because this blog has actually slowed down quite a bit. Lexxperience blog is about to catch up to and pass last year already and I've barely posted. Everything else is declining, which is logical since the other blogs are just sitting there.
I've been talking with Myke about Lexx on SyfyDesigns, about how the forums out there are kind of going down as people go MIA for whatever reasons, and how maybe it's time to step up and offer another forum on neutral turf (Myke has never been part of any of the older fandom forums and doesn't have a clue about how political the fandom history got). Right now SyfyDesigns is still in a pre-something stage and fairly locked down, contributors must contact Myke personally for registration, which means bots don't get into the forum. I've felt almost headlocked over the way I'm watching what's left of the public fandom on U.S. and Canadian soil kind of wind down to nothing, like an old clock, and I think it has everything to do with all of us getting older and money getting a little tighter. Anyway, Myke has graciously created a separate forum space for Lexx, and I'm going to see what I can do with it over this year. I'd love to get a few fans in there with me, but it would all be public and Lexx fans are generally super skittish.
Ok, that was a big thing. I just wrote out a proposal and posted it all over the place. It's funny how I can get something big done and whipped out and still feel brainless and like I'm faceflopping all over my day.
I always still pause wherever I'm working to watch the first blush of morning
that will always be magical for me
I've still been thinking about the dysphoria thing. Dysphoria can be any self image distortion, doesn't have to be gender, like skinny people actually thinking they're fat, or really pretty people feeling ugly, or someone (either sex) losing hair (I've been through that), or people who've been through body and face changing accidents or illnesses coping through the dysphoria of looking completely different now. It's a thing with chickens, too, they're very self aware. If you have an evil hen that won't stop beating other chickens up, you can sometimes curb that behavior by marking a wild discolored spot somewhere (nontoxic, because preening). I've seen chickens go through status changes during molting, so it's not just a human thing to be aware of how we look, and whether we are confident or not in how we look on top of the awareness.
For instance, I wasn't confident when I posted that proposal in other people's facebook groups or a picture of myself in a Lexx t-shirt on twitter and facebook, but I'm so used to the idea now that haters dis me anyway that it's less and less of a bump in my road now. I really haven't had to deal with much in the way of haters last few years anyway, but I'm not out there trying to start trubbas, either. Some people might think that proposal is very arrogant of me and none of my business, others might think yay, the ones who really need to see it might not even see it at all, in which case it'll fall flat.
I know, kinda blathering away the morning. Steamed up 10 pounds of pork ribs yesterday (Ruby Tuesday secret- super slow steam rib racks tightly sealed in a low heat oven with an inch of water), sauce it up, throw back in the oven on 'warm' for an hour, delightfully tender and the bones slip right out. I'm sure we'll be sick of ribs by the time weekend is over.
Me the rest of my life. This is how my head works when I think of all the things I still want to do.
I think I've mentioned a number of times I often forget what day or week (sometimes month) it is, and in the past during my worst brain fog years I've gotten lost in stores or driving around town and at one point felt I was making dangerous enough decisions in traffic to warrant legally becoming a non-driver. But a lot of that has gotten a bit better last couple of years, and it doesn't happen as much.
Well, it's happening again. A couple of months ago I couldn't remember which Walmart I was in between 3 towns and God knows how many Walmarts, took me nearly five minutes to reconstruct where I'd been just before and what I was doing that day (and what day it actually was). A couple of times lately I've out of the blue not remembered at all what building I'm standing in or how to get to a building I've been to several times.
I'm writing this down so I'll remember to tell the next medical professional or two over the next month that this is happening again. Brain scans have always turned out fine, and since this is familiar, I'm not really worried. I've been glitching like this since my daughter was about 8 years old, and that was way before the big brain crash and stuff. I'll never forget casually asking her one day if she knew what side of the road I was supposed to be driving on and then asking her if I was doing it right.
I think my pain level has been so high again lately that some of my light strings are flickering, like old Christmas tree lights when one bulb goes out and makes the connection bad for a whole length of string. Remember the old days, checking all the bulbs?
I haven't really said that much. Yes, I keep mentioning arms and hands. I'm still doing stuff, still getting my chores around the house done, still driving and getting groceries, still writing and playing minecraft and stuff. I'm sort of even doing more for longer, yay! It's nice being more capable. But I guess it's pretty overwhelming. I think what struck me was getting lost in my own house this last week. It's not the same as walking from one room to another and not remembering what you were just thinking (which is a legitimate and very common phenomenon that has to do with moving through doorways psychologically). I mean actually not remembering which direction to go to walk out of my house or something. It's one thing to get the wrong drawer when I want a fork, or open the fridge when I'm really wanting to open my oven, but getting lost navigating over a very short and extremely familiar space to a door I can't remember is another.
All my sensations get mixed up when I'm like this, too. I can't tell if I'm really hungry or not (saying this very seriously because I suddenly can't remember sometimes if I just ate a meal, and I have to watch my blood sugar) (I used to do this when I was working in the old days, too, try to punch back out for lunch 30 minutes after I'd punched back in from lunch), or getting whether I'm feeling hot and cold switched. I noticed this winter I kept feeling really hot until I put a sweater on, or really chilled until I took the sweater off. I've never done that one before. This is life with a glitchy nervous system. Doesn't even matter what it is. I'm positive for so many things that contribute to it- lyme, epstein-barr, bartonella, the car wreck, bell's (they're leaning more toward viral cause now), CMV, fibro... yes, we're all tired of hearing about it. But you know how like people wonder what they're old age is going to be like? That's what I'm saying NO to with everything in my power.
I think it's just that underneath everything, my arms and hands hurt so continuously and so much that I think I just turn my brain off so I don't have to feel it. It's like shutting down unnecessary programs to shunt off incoming overload so I can stay focused on what I need to do in the moment.
Need to try going back to bed now. I was so exhausted earlier that I conked and took a 4 hour nap, which is a dumb thing to do on the eve of setting the clocks forward.
~this morning~
-_-
And even with all that, we slept in. We never sleep in like this. I think it's the zombie fog. (And you can see Scott is kid proofing the deck so Bunny won't go plummeting to her grisly death.)
Even after all that junk I wrote last night up there, my brain is still zooming around way more than it used to. I like it.
Between the zombie fog and @bonenado computering, there's no way I can pull a youtube. See ya.
I've been using the word anniversary a lot lately, and will even more over the next year.
I've been all over the map the last couple weeks physically and emotionally. It's a fabulous roller coaster of sickening grief and pain and sudden relief and joy, which isn't surprising given my hyper hormone surges again (thyroid & cyst) on top of allergy season. I'm sleeping great, thankfully, so I'm not full blown manic, but I'm loving every minute of it anyway.
I never dreamed my brain would be so 'on' again. The only people who've known me with my brain all on are lurkers from before 2004. I pray every day it stays this way long enough to keep working on all this stuff I've started. I know I'll inevitably crash again, because aging does that, plus I imagine I have a genetic predisposition to Alzheimer's since it's in the family, and my mom had hundreds of TIAs (according to an MRI tech) before the big strokes even started (solid family history of strokes), so with me already being autoimmune and diabetic, I know I'm high risk and facing my brain being ravaged head on, and I know it could be a very long and difficult and immeasurably sad road for my family once that starts, because I went down that road with my mom. And she wasn't real old when it all started. I had a brain crash at a much younger age than her from a virus, so without even starting on strokes yet I've already been through a decade of severe brain fog.
So you can imagine me hanging on to every second of lucidity and running as fast as I possibly can while I still have the time.
This song seems to be in my mind every time I boing awake lately.
I know it seems trivial, but I set a couple of goals for the summer and I've already reached them, so huzzah, and now I need to GET BACK TO WORK. Except that I seem to be working nearly nonstop lately, and I'm not sure what's up with that. It's like I've broken through another barrier or something. I mean, this year has been a biggie in so many ways, but I'm still seeing improvements that make me think maybe it's possible to dream even bigger, maybe fly even higher.
For the first time ever on a personal blog I pulled in 3000 views in one month. (I've got pingbacks and my own cookie turned off, and my other trackers, who take turns catching bots and ghosts, wink at me that 3000 actual views with real eyeballs is about right.) Back when my total views were around 15,000 I was hoping I could shoot for and possibly hit 18,000 by my one year anniversary here. I've still got 3 1/2 weeks to go and flew right past that one, and all I can think is how weirdly numb I feel about it.
The last time I played a numbers game like this was the original eCritters, wiping out shops, churning eem into mega collections, colorizing whole tribes of pets like they lived in Hollywood mansions. That was me surviving a loss that felt like a crater. It was all I could do to dink around on a children's game because it was after the brain crash, eleven years ago this fall. And bad stuff just kept happening until it finally all very slowly turned around five years ago, and ever since has felt like crawling like a bug up a mountain. Until this year.
I still have glitchy days, hours, moments. I still facepalm over ridiculous ineptness that has me slapping myself silly behind the screen. I still can't believe I blurted something or left a typo that bad hanging for several hours before I even saw it and I proofread it 5 times on two different devices. I still die quietly once in awhile after I push the 'publish' button and then go crawl off like a worm. I once saw a license plate on a pickup jacked way up on monster tires that said "U WORM", that still cracks me up.
But I'm writing amazing stuff, way better in the last few short months than how I started out (I know #facepalm more rewrite). I don't know how. It reminds me of when I had to drive over to Kansas to take my GRE exams because I missed the local date, got lost and shot onto a turnpike in Oklahoma, eventually bumbled my way into a seat in the nick of time and didn't have a clue for several hours what I was even doing. I assumed I failed. I barely even remember it because the stress and fatigue were so bad, and it was really cold, and I barely had enough money to eat because I wasted my gas on that stupid turnpike. I was starving when I finally rolled back into my own yard.
I got called into a plush office on campus later, and sat alone in a big leather chair on one side of a big room with a really nice desk while two 'old guys' (professors) fussed quietly over a piece of paper on the other side of the room. They walked back and looked dumbfounded at me over their glasses and asked "How did you even do this? NO one does this." I had virtually failed one part of the three part test, at least badly enough to never get into graduate college, but I had wildly surpassed the expected above average averages on the other two parts. They'd never seen that happen before. How could I be so dumb on a whole section and so brilliant on the other two? I told them I don't know, I had no idea what I was even doing.
That was the truth. I fly blind. All my life I've been ricocheting around, bumbling my way through relationships and jobs and life in general, never quite oriented, and yet succeeding. My psychologist wasn't the first to ask me how I'd managed to hold jobs and get a degree, much less keep a marriage intact for two decades and raise children who didn't wreck cars or become alcoholics or get pregnant in high school.
They let me into graduate school on the proviso that I not let a single grade slip, and I managed to pull those As in right and left, even though I'd failed, dropped, and nulled a few classes as an undergraduate to the point of having to request a hearing over whether I would be put on probation. I won the hearing. Because I wanted to.
I've always won. Even when I lose, I win. I always find a way to win. Every single thing in my life is about winning. I use losing as a strategy. I even lose on purpose to postpone winning. No one wants to play Uno with me because I can keep a game going for three hours. People stopped playing chess with me years ago because I'm not content to checkmate, I have to dance around the board squeezing every drop of blood out of the game until there's nothing left to do but win. I once kept a Monopoly game going for a week by extending credit and upbuilding hotels into mansions. (Imagine spreading out several boards or making 3D Monopoly. I dream...) And now I play a different game.
I have barely begun this monstrous set of goals I put together three years ago. I originally meant to have more done by now, but by more, I mean far less, because I am doing ten times more now than I originally envisioned. If I'd already accomplished what I had set out to do in the first place, I would have finished already and it would be a lot smaller than all my unfinished stuff I'm working on now.
Some days I feel dizzy. This is a lot of stuff. Most days I just feel high. I've got my brain back, I'm in high gear, and I'm mentally so buzzed that I hope this never ends. I want to be this busy the rest of my life.
If I could sit for hours without pain like other people do, if I had a team of friends working on the same goal, if I had the money to get the proper tech to support the work I'm doing- just imagine. But imagine me accomplishing all the stuff I want to do without that. Imagine winning the game the long way around, excruciatingly slowly, every move, every strategy, every keystroke going out into building a mansion, brick by brick.
Squeezing out every last drop of blood. I am so high feeling good about where I'm going.
