ten years later

I didn't make this, but google clicks it to the generator and not the finish.

You know how I used to make lists? And then I'd check in on how the lists were going. I'm noticing all that kind of buzzes on automatic now in the background, and nothing is truly being screwed up much any more even though sometimes it feels like it. I started the actual Plan in 2008. I'm just now feeling like I have my whole brain synced up. That's how long health fail and nerve damage can take, but it's so much better than being stuck like that, or worse, gone by now.

I'm still here!!!!!!!!

Ok, where am I now and what am I doing? I'm liking the auto posts that roll out. I'm liking that they tag-thread into a story. I'm liking that I can walk off and not think about that while I work on other things.

One of the more recent things coming up is getting into the old fandom forum for salvage work. Tech support is in now, and the next few steps will involve making decisions here and there about where to house and maintain. I'm cool with whatever we need, the salvage itself is the goal.

Server staff meeting happened this weekend, and my two major assignments are to get back on platforms and research a new End spawn area. That's my homework the rest of this week in between real life.

Google super changed analytics, and all my properties unhooked. I have to go hook all those back up by the 25th.

I still haven't deleted Kaspersky and I really need to shut that auto pay off. Any time now, I think. Facepalm if I missed that. My email has been so screwed on my phone, finally got an app on, now my phone is so bossed around that I just don't even check it because I'm ignoring it so hard. *sigh* I know, not good business practices.

I have been using a Janika Banks address for Klout, and I'm thinking about making it my official contact address for property ownerships. I have to put something down, so that might be a thing.

Real life mode, have made it through this far into tree allergy season without resorting to using a steroid. This is typically one of my big airway rescue times of year, and I'm very pleased that I'm living more normally than ever through it happening all around me. Really cranking the antihistamines, still using hepa all over the house, still running my washer like a crazed maniac, still stopping most of it at the entry room doorway.

Tomorrow is a huge day, two appointments back to back, and Friday, depending on how I assess, I might be done with another round of therapy. No idea yet, but kinda looks like I'll be released. I can always go back later in the year if my shoulder flares up again. This area has turned out to be a crucial key to major pain referral and the reason I finally caved and got on gabapentin in the first place. I don't see me getting off the gabapentin, in fact have increased the dose this spring, but since I'm in Plan C now, I'm not going to waste time frustrating myself. The goal is to work within the parameters for best function as long as possible. That means continuing to control my blood sugar, don't get dehydrated, get plenty of real rest and good sleep, and eat as nutritiously as possible. Medications cannot save anything. They are bandaids, and they bring in setbacks of their own, so I have to be smart about this.

I don't talk about my real actual life a lot, but here is the thing. I don't run around doing much. I don't go to the mall or theme parks (I'm in a tourist area), I don't go to theaters or restaurants, I don't go out in the sun for outdoor events even though I very much wish I could, I don't over plan and over do, and because of all that, I don't wind up laid out on a couch for 3 days recovering. I'm a super spoonie, I know my limits. However, because I am diligent, I am able to drive my own car, do my own shopping, and be there for others as needed (within reasonable limits) because I haven't worn myself out doing all the other things. I am able to self care, self motivate, and self monitor because I try to stay in a good place for depression swings. The worst thing anyone can do for depression is spike their blood sugar and live with high blood pressure, and drag in the door laden with pollen and pet allergies to the point where the house falls into disarray and there's no energy left to clean anything up. I've been there. I've been so down physically and emotionally that I hid in bed for weeks at a time. I had to consciously decide to rearrange my priorities, my needs, and my wants so that I could find my way out of continual super fail on all sides.

I don't sit around, either. I cannot sit and watch TV very long without creating new joint pain and headaches. I can't sit at a computer for a long time doing whatever I want without seriously crashing my day, because I'm so useless when I stand up and I can't think any more. I take lots of breaks moving around and getting chores done. I do touch bases with several groups or family, I do my nerve glosses and stretches, I line up what else I need to be doing through the week/month, and I feel good about being able to do these things.

I don't dwell. I don't dare. The minute I go into 'poor me' mode, I lose. Profoundly. I sink into a bog and ruin the rest of my day with sadness. There is no one I know anywhere who can pull me out of that, and they shouldn't have to, in my opinion. If my mood is entirely dependent on another person boosting me back up, and they don't do it continually, then we both lose. I wear someone out, the relationship fails, and I'm alone. It's up to me to want to live badly enough to stand up myself. I want to live in a clean home. I want to eat good food. I want to look a little better than just rolled out of bed. When left on my own and no real humans, I'm the worst bachelor in the world. I'll wear the same clothes for a week, won't comb my hair, forget whether I've eaten, and utterly fail to meet anyone halfway by making it to an appointment. Because other people are in my life, I rise to better, and I'm glad I have those challenges. Without them I would be a blob of gross wasting away, curled up in a dark room with headphones on and medicated out of my mind.

I had a good mother's day this year. It's one of the first ones I've made it through without a big depression dive. Between that and still floating above the tree allergies, I'm pretty much having a phenomenal spring.

And since I have memory fail, I'm putting it all here so I can come back and see that I had a good day/week/month. 😊

pinkyblue

I haven't been saying much this month because I'm working on other projects and paying attention to other things, like what friends are doing on their projects. I'm taking a little time to notice other people's stuff. Ok, yeah, and lurker games. I'm also going on more braincations without taking the medias with me.

Still here being Pinky, though.

click for deviantart source

Staying busy.

my point of view, such as it is

CAUTION- Graphic content.
Strong warning on triggers for rape and violence.

I know y'all know I strongly discourage comments because I'm weird and you're all cool to never comment even though that's an option, but this post has comments turned off. This is the first time I've ever put all this together in one place with real names and searchable linked content. I'm still not capable of getting through convo about this event, but at least we'll all know now where my head is sometimes.

Three years ago on pinky blog I started blogging through a daily depression trail that starts every April first through my entire adult life. I started questioning why, and you guys watched me uncover and start dealing with a repressed memory. Today is the first day I put together the bits and pieces and deal 'out loud' with what happened.

This is Julie Ann Jackson. She lived on 816 N. Watson Ave. when I knew her in school. She was my best friend from the fifth grade. Her hair was naturally golden, and she was slightly chubby in a very pretty way. I considered her my only real friend (because that's what aspienado does, one real friend at a time) even though she was very popular and had lots of friends.

Aside from biting my hand when we were ten because I was being so bossy that she had to find a way to make me shut up, she was always kind to me, and every time I showed up near her, all her other friends moved over. I never thought about why, but I knew that was my place. I know now that she knew I was different (I'm autism spectrum), and she elevated me to an intellectual status dismissed by everyone else, including my family. I was the only one in school that could keep up with her on all kinds of testing and reading material, although I never bested her at anything. She was one of those true MENSA types with a very easy personality, and she spent time not only including me, but teaching me how to draw horses and taking turns writing stories that we passed back and forth in classes. We attended all the sports events together, and the only times we were apart was for being in different classes or activities. Because of her, I actually had other friends in my life that I probably wouldn't have had without her.

My family moved to another state right in the middle of the ninth grade. I've written about how hard that was, the day I left I didn't even get to say goodbye. Thankfully, Julie loved snail mail, and we sent off letters to each other 3 times a week like clockwork for at least four years. I did get to go back the summer after graduation and visit, and she gave me the royal treatment. I was family to her. She escorted me around showing me off, took me to her house, drove me around talking about college and friends she had and her boyfriend. I was as out of the water as a Vulcan fish with my Asperger's, for those of you who know Spock history, but that didn't phase her in the least, and I let her do all the talking and leading me around while I just soaked her in. She had grown up while I was gone, and she was beautiful and charming and didn't miss a beat. After I went back home we continued writing to each other as she started college and my family moved again. I had a big box full of all her letters the night I got the phone call.

I've written in several places what that night was like, but I'll keep it simple here. Emotionally I almost instantly went into hard shutdown. For those of you who've never experienced that or know anyone who has, I very literally chopped off my emotions right then and there. I didn't cry. I didn't feel. I didn't talk about it. I hung up the phone, ignored everyone, and went back to bed. The next day I took the box full of letters outside and burned the entire thing without a second thought. I didn't feel anything doing it. I didn't reflect. I didn't have a reason.

Nearly everything that happened over the next several years was the result of that hard shutdown. I went through a bad marriage and became an alcoholic. I wound up in a big city underground of drug dealers. I met people completely off the grid doing despicable things, and I talked to people who witnessed or lived through atrocities that would make most people very sick. I didn't blink an eye.

After I stopped drinking I started turning my life around, went to college, remarried, raised kids, had jobs, met people on the internet and finally started having 'friends', although much of it went badly very quickly. I never questioned that until one particular friend stopped talking to me, and without warning I spiraled into an abyss of despair that lasted for months. I felt so desperate to understand why this was happening and why I couldn't keep friends that I started seeing a psychologist, and have spent years learning how to see myself objectively, how to assess and make goals and plans to reach my goals, and how to deal with feelings. I'm not just autism spectrum. I have a complicated diagnosis that includes delayed response, which means I just don't deal with my emotions.

So by 2015 I'd been working on all that with my psychologist for eight years. I still didn't know what the real reason was for that particular depression in April, and I didn't yet realize I had displaced it onto the friend I lost that woke me up out of that hard emotional shutdown. Somewhere in 2015, one of my sisters delicately brought up my friend's murder, saying they'd been afraid to tell me it was showing up on the internet, and she was right, I was absolutely terrified to click around and find that pain. I started going through a series of little shutdowns over and over between 'waking up' to more and more ability to feel in real time, and I guess all the stuff I should have processed through years ago started processing, and believe me, putting off dealing until later doesn't make it any easier. When I finally started remembering and as I was slowly able to start reading about this very famous case, all the feelings and emotions swept over me as fresh as they should have from the very start. I was making up for 30 years of lost time processing through all those emotions.

In case you'd like to know more you can -click this- and read an article of interviews with the medical staff who saved Colleen, the person who survived. Here is a good quote from one of the nurses.
One of the nurses in that operating room called me to say Guzman's crime was as vivid to her today as it was 30 years ago. "I remember every detail, because it was so horrific," she said. Doctors and nurses spent nearly 12 hours trying to save Bush's life, and that nurse said the experience taught her about strength and fight and survival. "It changed my life," she told me. "I made a decision that night that if anything like that ever happens to me, I'll fight to the end."

The official true crime book Escaping the Arroyo (which I have not yet had the muster to read), has a Facebook Page, and you can find author info on Amazon and her dotcom.

This crime story was also featured on Investigation Discovery. I still can't bring myself to watch that.

Here comes the graphic part. This is the part I live with in my head now that I've put nearly all of my pieces together.

This last week was Julie Jackson's death anniversary. On April 5th I kept triggering into a memory of my dad and a sheep. You see, I've seen a living body stabbed. I'm about to tell you a story about saving a sheep's life, and after that I'm going to get really rough. I'm making sure you really want to be here reading this... It's ok to stop if you want.

When I was around ten or twelve I think, making my next sister down about 8-10 and my brother 5-7, Dad found a sheep loose in the alfalfa field. Sheep will gorge to death sometimes, but my dad was able to force her out of the field and up a little hill before she flopped over gasping for breath. He ran to the house, called us kids to follow him right now, and as we arrived was already commanding us where to sit on different parts of that sheep, to hold her down at all cost, don't let her move at all, and we obeyed immediately because we had been taught like that. As soon as we got square on pinning that sheep down (who, incidentally, wasn't moving much at all because she couldn't), Dad whipped out his big knife and plunged it into her belly, then dropped the knife and pulled the wool apart on both sides of that big hole and barely got his eyes shut before he was sprayed all over with the vilest smelling stomach spew you ever saw. He never once let go of keeping that wound open while us kids were instantly working very hard to keep that sheep down in one spot, because naturally every instinct in her body would be to fight whatever punctured her.

After that was over, which didn't take long, we were almost too cramped to stand up because we'd locked her down so hard, and Dad was just nasty. The sheep got up, shook off like a dog, and trotted off, feeling much better. We had to hose Dad off, and we didn't get an explanation until that stuff was off his face so he could talk.

It's not very often you see someone stab something out of the blue, and it's probably even more rare to see children help hold a living being down to be stabbed. We didn't whine or cry or question. Our dad could do anything in our eyes back then, and even if we didn't like doing what we were told, we did trust him to know exactly what he was doing.

And that is leading to this. (I know, you're thinking that wasn't graphic, but if you get queasy or cry easily, you do need to leave now.)

I grew up helping butcher sheep. I know how to hold a very heavy body down, how to drain its blood with a little nick, and how to keep it from automatically thrashing while the blood drains out. This is very important if you don't want the meat bruised up and you want all the blood out. Blood will spoil much faster than the carcass and must be gotten out so that the meat doesn't spoil if it has to sit.

Since I sat on sheep and helped skin them from childhood, I know what blood smells and feels like, I know how heavy dead body parts feel (especially the head), I intimately know how bodies feel while they are dying with all the tiny little muscles twitching for awhile, all the jerks and gasps and groans. All these things are automatic reflexes a dying body does, desperate for oxygen, working hard trying to increase blood flow. When the brain is still alive and the body is dying, the nervous system comes on full blast trying to stay alive.

Imagine what it must feel like to be raping someone while you feel all that happening in the other body against you. Imagine being able to smell the blood gushing out all over you while you keep stabbing. And it's not just blood. What we see on TV shows and in movies is so clean compared to real crime. Being stabbed in different places pops open different kinds of fluids along with the blood. Imagine smelling bilious stomach contents while raping someone. Imagine smelling intestinal content, being slimed with it and blood while you're raping someone. Imagine the jerks and gasps and groans going on all over the body while the eyes roll grotesquely around, all the smells and sounds and all that slime...

Imagine being all done and staggering back to the open the trunk of the car to start over on the next person. Imagine finally being satiated and driving off, thinking no one would ever find your mess out in the desert like that. Imagine someone actually living through being stabbed 30 times and crawling up the side of an arroyo to a highway. I grew up in the desert southwest. I can imagine a bloody slimy body being caked with dirt and grime and full of weeds and ants by the time it got to a highway, and I can imagine how terrifying that would look to someone stopping at the sight. And that was before cell phones. All that time that passed. All the grit and work and waiting it took to LIVE. And hours and hours of repair with a medical team. All that recovery. And then living with the memories the rest of your life.

I emotionally shut down when I got a phone call in the middle of the night. I never thought about any of that because I just couldn't go there. I had already grown up with so much experience with death, with seeing and smelling and hearing and feeling death.

So all week long in my head, I have been there with my best friend. I have been feeling her body being violently punctured, I have been smelling her life fall apart into slime all over a nasty person's raging body, I have been hearing the squashed grunts and gasps and wheezes, and feeling every muscle strand in her body straining for oxygen as her blood drained out, the muffled frenzied thrashing being held down for the rape as her consciousness slipped away.

I cannot stop crying.

Friends, when I give you a heads up that it's a bad week and beg you not to take me personally if I fail, please understand hell is filling up my head, and I can barely hear or see you over the pain I am in.

Here are all my posts with the tag #sadness.

I have to run out the door. If there are typos I'll fix them later.

this is me going to bed early

Every time I open youtube it keeps shoving this one at me for over a week now. Maybe they're right. Time to get back to distraction again.



I also stayed on the game server till several people told me to go get some sleep. Also noticed I nearly stopped eating again, so this is my first double euphoria back to back. Hope it doesn't get too interesting. Like this morning when I confused today with next Thursday (at least I got the Thursday part right) and suddenly snapped back into the right day with only 40 minutes to get a shower and get out the door for an appointment. Doing well in all other ways, just orientation is out the window again. Oh well.

Puddleglum

I'm silently coasting semi tilted and askew like a muted minecraft boat across a moonlit ocean, floating incoherently around my house looking at the clock every half hour. Up is down and now is never and all the salt has been poured out long ago. This is what an eon feels like to a photon between galaxies.

Thank goodness for crock pots. That alone saved this whole day.

I have nothing wise left to say and my head hurts and nothing helps. I know I did this to myself. Pain be damned, right? They said double the med, so I doubled it and conquered all the hard things like I had the right to colorful spandex, and now look at me, wilting around brainless, useless, motivationless. Sleepless.

I was asked several questions yesterday during 6 month follow up assessment, I answered truthfully, and I remain free to continue sans head meds. I didn't volunteer that I triggered hard the other day and had to all-stop, and I didn't share the concerns and disappointments in my head, because I know all this is just adjusting to chemicals changing again and will soon pass (again) (they always do, this is so familiar). I also didn't mention the sad, which is partly very real and not just lopsided chemicals.

Just keep making words. Keep walking past the ennui. Keep looking forward so I don't see the bumping around in the dark. Keep looking at a teeny distant flicker I hope isn't something I'm just making up in my mind. I mean, of course it is, I invented all of this, it's the only reason I'm out here. I created *this* so I could keep bobbing on a dark ocean under a moon on a monitor.

I'm still really pissed about what happened last week, and I'm glad I turned it into a big deal. All the same, who do I talk to about it? Myself?

Some are called Lightworkers. Some are named Illuminati. Some are Alliance, some are Cabal. Some save children, some pass children through the flames.

One of us is very cynical.

If someone does wrong and calls it right, it is not right. If someone does right and calls it wrong, it is not wrong. If someone hurts another person for gain of any kind and justifies it, that is not right. If someone saves others from damage and victimization, that is not wrong. Yet we keep getting these things mixed up. You cannot hurt others and be doing right no matter how loyal or faithful you may be to your belief or your cause. You cannot save others and be doing wrong no matter what anyone else says about whose side you are on.

It is occurring to me that the ones saying wake up and the ones putting us to sleep might be the same thing.

What is your own heart saying? What is your mind and soul saying? When something beautiful and inspiring carries a sinister taint, or when something ugly and vile glows with warmth, maybe it's time to just step back a bit and ask ourselves what we just got pulled into. And maybe, just maybe, right and wrong are being so tangled up that we can't think any more and it's just easier to think what we're told by those we trust to be saying what we hoped we wanted to hear. Or, actually, those who yank our chains just right.

My own mantra is if all else fails, nourish my body with clean water and healthy foods, rest from the fray, and stop my mind so peace can seep in and refresh me. I walk away.

Lamenting the world and torturing ourselves with strong emotions over injustices is a form of self inflicting. Thinking that we are doing the world a service with our enraged or inspired overthinking is a disservice to our own health. We cannot be good for others if we are not good for ourselves.

There are some we praise who get high on the suffering of others, and I'm not talking about politics. There are some who skate above the noise because they think they earned a Place, and we give them money to live comfortably, and I'm not talking about religion. Every single day millions of us spend millions of dollars on entertainment, on an industry touting right against wrong while doing wrong against right.

There are some others thrust into places who could potentially change the entire world, and they are so afraid someone will kill, maim, or mute them and their children that they remain silent. It's difficult to stand up and say something like 'me too' when decades of evidence backs up cowardice over bravery. It's one thing to stand up for 'right', it's another thing to use it as an agenda. Stuff like that.

Then there is me. "Puddleglum, with Plato, recognizes the difference between the world of shadows, and the world with the sun."

Sometimes I find someone like me.

This is the truth behind all other truths, beyond all rights and wrongs. At 4:30, enter the clearest presentation I've ever heard for every argument anyone has ever made about any *thing* on this earth. This is a guy who is so done with right is wrong and wrong is right that he actually took on exposing a government program knowing it could cost him his life. Not just his job. His life. Sometimes being disgusted enough to step up is the rightest thing a person can do on this planet. Sometimes the only way forward is to accept that there is no 'good' around you before you can see what truth is.




Parens patriae. We are all owned.

Knowing how invasive and abused this 'protection' is, being on the side of 'right' and 'good', how can you possibly believe any institution is 'right' and 'good'? All humans are human. All people strive under duress to meet agendas. Never assume everyone around you is free from pressure to toe a status quo or keep a secret or protect their own asses. Never assume a friend (coworker, churchgoer, family) won't stab you in the back out of weakness if their world turns black.

YOU decide what is right and what is truth. Do your own thinking, research what you can, put together what makes sense, and take control of your own mind, your own emotions, your own lives. If you know you are hurting people, make a plan to change that and stop hurting people. Don't take that to your graves with you. Don't justify it and pass the blame. Don't give someone else the power to hurt people by using you as their tool.

If you want to fix the world, fix yourself first. If you want to heal someone, heal yourself first. If you want to find the truth, find your truth first. History changes for other people's futures every time we decide to make a change in ourselves and act on it.

Funny how a headache goes away when I let the words out.

=/

dang it, forgot the title again

Sorry, no linkback on that. I'm kinda doing a flashback thingy, and it's out of last year's folder.

I was a mess last year. I'm not a mess this year. So far 2018 is significantly improved on 2017 in my house.

The year before that was pretty good on this day. Well, I was faking that it was. I pulled off a pretty good fake, I think.

The year before that one (3 years ago today, well, the 29th, because I didn't make a post on this day) was probably the most focused.

2014 I was all like STOP stop stop... I've gotta get off here before all my work ethic rambles out into blah blah blah and unknits my brain.


2013 in my private blog. (Six months later I would have 2 grandkids and a huge server move on my hands.)

Oh, yeah, need to get my bills done today too. Actually in a pretty good mood since I got good sleep. Totally betting on everyone involved in the drama dept in my life to start shooting all at once sometime during the day, so it won't be any real surprise if and when it happens. Meeting with Griff, JUST SAY NO.

2012 I was incognito and about to make a disastrous mistake throwing everything I ever did on the internet into the trash. Everything still surviving was in lockdown.

2011 and 2010 are inaccessible at the moment because I slipped up this year and didn't pay my Xanga fees. Actually, I opted to get that genetic cancer testing and have been paying $100/mo out of pocket and had to let a few other things fall out of my longterm plan, hopefully I'll be picking those back up and super crossing my fingers they don't disappear in the meantime. I still have a year left to go on those payments I'm making.

2009 around this time I was working on a survey. It included this question-
What do you want to know about the future?
Am I about done cycling through human lives, because I’m getting really tired of this.  I’m ready to move on to the next planet on the roster. 

2008 was horrible and I was watching the birds fighting over the bird feeder in the snow. The only way I was able to see this was pure accident via fluke. I shouldn't have been able to because the fee expired.

2004-2007 are gone. I had a handful of blogs and nearly all that content is gone now. I was dumb and deleted stuff, alas.

Every year is its own kind of hard. Every kind of hard was really hard while I was in it. I don't think it will ever not be hard. I think over time I have watched myself get better at not taking the universe personally, like letting go of blame and getting really good at rolling with the punches. I feel like I have an emotional six pack. I am in really good psychological shape nowadays. I think a lot of it was realizing over an extended period of time that I can actually be very powerful when I am still, that I can be a force without exerting force, and that I really don't mind so much when life sucks because it means I'm still here.

I'm still here.

Super flashback vid. You're welcome.

things going on before the calendar flips

March 2007
egg and feather courtesy of Jaizzy, collectible tray via my grandmother

Random photobucket pix for no reason.

Dec. 30, Saturday

Cut 7 inches off my hair. You can't even tell because it was so long. It's still past my shoulder blades. I talk about my hair more on my spaz blog. I mention it sometimes on this blog, too. If you're having hair issues, I seem to be solving mine naturally if you want to look through those link threads.

July 2007
snapping turtle in our yard, wouldn't let go of the flip flop

Went through my closet and all my drawers for charity donations and discovered that since the gallbladder removal, I'm a size smaller in shirt size now. Nice! (Didn't even lose weight for that, lol. Guess my poor tummy was puffy for a good reason.) I still like big and comfy, but I'm medium chested, so blouses have always fit funny. I might be able to get some sweet clearance blouses at Penney's if I can go down a size now.

I nabbed this many years ago from the original Hampster Dance site

Making chocolate pie for Papa because he's been exceptionally good this week being home with me and Bunny while she's off school. Pudding pies have less sugar than some pies (and way less starch than pastries and cookies!), and I bulk up the eggs from 3 to 5 or 6 (meringue with extra whites and still only a tiny bit of sugar is excellent), and with the milk that's pretty much a chocolate flavored protein pie. I don't do those very often any more, but that's going on today. I'm diabetic and am successfully controlling with diet, which I talk about in several places but lightly recapped into one handy post. I know it's hard, and I really hope I can help. Btw, don't be dumb and plow the pie down too fast. One piece, wait a couple hours before you dive in again. Be smart about controlling your glucose levels.

February 2007
proof that my husband was not the only person there with a camera taking pix of people they love standing in a line
why this was such a huge deal I'll never understand

Working on a new winter/spring syllabus to get me organizeder around here again. For awhile I was really good at daily/weekly/monthly lists and last couple years those have gotten more and more bombed with real life stuffs, so I need to find a more permanent way to keep my lists in front of my face. Bunny has a little chart... I might need to get me a chart going. She'll be jealous of my stickers. I may need to rethink her little chart because it uses magnets and those are kind of backfiring. She sneaks magnets on. Maybe stickers are the answer.

January 2007
I used to mock Scott's Minnesota teams
I know right, baseball Cubbies all month during the Superbowl wait
we're still married...

Dec. 31, Sunday

Watching the fireworks go off around the world on twitter. Wondering if I'll be able to stay up tonight like I hoped. Maybe I can get a nap.

March 2010

I have a long day ahead of me. A new year is nearly here. I can't see my future very well, but I do know that I'm ready to capsize all the boats now. A little toast to 2018, and hopes that I finally say it all. I'm ready to move on to the fun stuff.

emotional consorts

click to Get Peanutized

I've been thinking for a long time about how social media has created new ways to connect that no longer fall into traditional roles. I've been on the internet since 1994 and have seen it all in so many varieties of ways that I'm convinced traditional roles in societal norms in developing civilizations over tens of thousands of years catered to the purpose of crowd control, when all else is brushed away from the archaeological bones of our anthropological history as a human race.

I remember my mom being on the phone quite a bit on some days when I was a kid. We shared a party line with several neighboring houses, about ten miles out of town along a rural highway. Back then we didn't know anything about depression and how connecting helps people get through rough days. Telephones were probably a godsend to her on some days, but none of us really understood the need. Our world was pretty black and white back then.

I was in the 9th grade when we moved to another state. My best friend and I snail mailed each other faithfully 3 times a week for a little over 4 years. I'm not exaggerating that at all. I had a huge box full of letters that documented her half of our unending conversation, and when that conversation ended, I was so lost that I completely shut down emotionally. It took me years to understand why that particular friendship was so deep.

In the mid 90s I jumped into the email trend, which was basically a lot like twitter in slo-mo, and wound up in fan groups and forums quickly after that. I had never had so much connection in my whole life. I cannonballed with so much gusto into connecting all over the place that I irritated a few people with my splashing, but I loved every minute of it. I didn't learn how to emotionally connect, though, until real faces started showing up with all that connecting. I had no idea what to even do with that, but I learned very quickly that's when it starts to hurt. It took more years to figure that part out. I had to learn to be more careful and play nice, and I'm the first to admit that my idea of careful and nice back then were not careful and nice.

I ran into a wall one year that disconnected my whole world, and everything felt like the rubble in the wake of the Nothing in Neverending Story. Several horrible years of rubble went by before I decided to give up and walk away. I was on the verge of deleting the very last of the rubble when Something Happened and shook me awake in seconds. From that moment I have intensely interrogated myself and studied how to get what I want.

I made a Plan and got back into the internet, learning to swim all over again, trying new ways of connecting. People are real, and I need people. I've spent most of my life so alone inside of myself. I have felt several times like if I didn't find a way to connect to my own humanity I would wilt and die inside. I cannot connect if I'm alone.

Part of my motivation was unclear at first. I had to keep reaching deeper and deeper inside myself, pulling out ripped up shreds of cast off emotions I never dealt with. My survival skills were a lot like the Walking Dead, shoot first and walk away, or just go another direction and disappear so no one can find me. I've done that both in real life and on internet. I am really good at knowing how to just go away. Part of my intense self questioning vomited up a very ugly self righteous gloater that didn't have a clue how to care about other people (my narcissism diagnosis, guys), an emotionally distant loner buried deep in obsessions (my autism diagnosis), a sad cynic who refused to believe happiness was nothing more than a lie invented by social structure controlling people (severe depression), a tiny child terrified of monsters and shadows and water and death (anxiety and dissociative disorders), and an overlord squeezing all of that together into a tightly controlled survival unit that blew apart after a string of viral illnesses affected my brain.

I watched everything about me fall apart as I raced time to keep dissecting, keep laying it all out in autopsy, keep looking for all the pieces I need to make all of this functional again, because without a coherent goal, 'I' simply have no meaning. My soul is a tattered shred on a crusty plain in a very long night. There is nothing else laying around inside myself that I am able to see that gives any part of me a tic mark in a box that doesn't say 'FAIL'.

Except to tell the stories.

There is redemption in honesty. I think that is inside all of us. Humanity is a story. We are all stories.

HEAR and attend and listen; for this befell and behappened and became and was, O my Best Beloved, when the Tame animals were wild. The Dog was wild, and the Horse was wild, and the Cow was wild, and the Sheep was wild, and the Pig was wild--as wild as wild could be--and they walked in the Wet Wild Woods by their wild lones. But the wildest of all the wild animals was the Cat. He walked by himself, and all places were alike to him.

That paragraph clicks back to source.

I need each of my people in each of their individual places. I can no longer slot people into categories like a tackle or embroidery box. Each person I connect to is unique to me and in their very own slot in my mind. Each slot has its own kind of personal reason we are connected, and I will never be able to go back to the traditional slotting of genders and roles and whatever else people get labeled with. Each and every person I've ever met seems to have grown into their own thing inside of me while I have taken myself apart, and as I put myself back together I can see now that the only way any of me goes all back together is by intersecting the connecting lines of other people with myself. I still feel all the same feelings about each person now that I did years (or days) ago when we last connected, and those feelings never change, even though I keep changing. Each person I have encountered has helped create who I am now, and I could never go forward as a soul being severed from that.

One of the things I've learned over time is that no one person can hold all my feelings. I am a wildly oscillating passion of obsessions with very little natural social intuition, so when my emotions, whatever they may be, blow up into roller coaster rides, the only way to survive them is to spread myself across as many friends as possible as quickly as I can before one unlucky person gets yanked into the roller coaster with me. I'm afraid I'm only just lately over the last few months becoming cognizant of this, so apologies to a few people who've been dragged in front of the bus with me, and especially one nobody really knows about who has actually been surviving that in real time.

I am part of what I now privately think of as a small tribe of emotional consorts. I can see now that the one person I needed and pulled into that crazy upside down fling needs to reach out and balance with others who need to know what's going on for the support system to work. I can be very selfish when I'm stuck in my tunnel vision, but to get what I need the most, I need that entire support system in place. I'm still getting used to this idea.

This is all new to me, but I think it's what I've been missing and needing all my life. I just never knew how to be part of a little group of close knit friends. It's exhilarating. And I think that's how it's supposed to be. It's not about rigid roles in labeled slots, and I don't think it ever has been. Psychological health in homo sapiens sapiens is about the connect/disconnect. Before there were societal norms, there were little groups interacting without labels, without rules about roles. Maybe aspienado kicking at the cart all these years was simply about persisting in my quest to find other brains that mine can fit with, without all the junk in the way. Like the first friend I faithfully wrote letters with 3 times a week for 4 years. She was popular and had lots of friends, and she was my only. She incorporated me, the others moved over, and I dismissed them a bit (I accepted and talked to each of them in school, just never thought of them as *my* friends), but maybe it's time to finish growing up. I run with a pack now, and we take turns stepping aside for each other. I got that a bit wrong on the medias, but I think I'm kind of getting it right now in the background. I sure hope so.

gotta see your face some more

*floating*

My first opioid since the 5 mg shot of morphine in ER last year that sent me straight into PAWS hell. Post surgery medication this time sent me super floating straight into euphoria. I. love. EVERYONE. And now that I've been intro'd to high dose vicoprofen, I'm already planning strategy getting back off it before I abruptly run out. Can't break them in half because enteric coating, so trying to stretch them out longer in between. So far handling nearly 6 hours between doses now. I know they want my pain well controlled but I started with only 20 pills every 4 hours and that drop off is going to be pretty evil.

And my dreams are wildly unreal. Everything disconnected the first night, literally watching myself doing cartoon dishes in a cartoon house, everything in my dream was animated and blinking back and forth between minecraft. Cartoon, blocks, cartoon, blocks, I finally just got up for awhile. When I went back to bed I started having memory dreams from being under anesthesia, like when my airway was put in. Felt my teeth clonk, abruptly woke up. It was fake. Felt a knuckle bump on the top of my head and abruptly woke up. It was fake. Kept falling back to sleep and abruptly waking up as I relived some of the prep before the really deeper going under, so just staying up nearly all night was easier. Couldn't really function, so just played on facebook. Sorry if I flooded your feeds with super share, lol.

The really cool thing was pre-op before anesthesia. For the first time in my life I had absolutely no anxiety at all in a medical setting. I don't know if I finally just reached a state of too tired and didn't care or what, but nothing at all bothered me or stressed me out. I knew I'd be knocked out soon and was looking forward to it, answered questions over and over again like a string pulled doll. I managed to do the smile and eye contact thing, everything went smooth with interaction, yay.

Pre-op was sad for the people around me though. A much older guy on my right was there for lots of lymph removal around his face and neck, would be a long surgery, and he rattled everything he knew about American presidential history, all the places of historical significance he'd traveled. Heard quite a lot about Andrew Jackson before someone asked him if family members were there to drive him home, then he stopped and there was a sad no. Was anyone out there for him? His pastor... Did he not have family living nearby? A son and a daughter, and neither one made the time to be there with him. He's obviously end of life in a high risk surgery and his own kids weren't there. He stopped talking after that.

An older woman on my left just quietly cried. Not quite sobbing, but nonstop quiet crying. She was asked if she'd like family to come sit with her, said no. Was anyone out there for her? Yes, her mother and her daughter. Was she sure she didn't want anyone? She answered with a very miserable sounding quiet no. I guess the relationships were better held at a distance. She wound up having a very horrible surgery involving vulva repair after leg loss, and we wound up in recovery beside each other. She was right, both her mother and daughter were emotionally distant. At least they were there, though. She got a call from her husband on dialysis during recovery, and she asked how much he'd been drinking before dialysis, sounded like he made it to fourth in a bottle of fifth and it wasn't even noon. She got after him, hung up, rolled on her side facing me and shut her eyes, didn't talk to anyone. At least he called, and at least they were there.

Through all this I reflected on my own life. I have family who loves me. We're not perfect and quite a lot of our backgrounds are highly dysfunctional, be we love. each. other. We are there for each other every day, we talk and say I love you every day, we care about each other having sucky days. And I felt fine in pre and post op knowing I was loved and I loved my people. I was truly at peace.

It's really nice to reach a place in aging life where you realize you don't have any sadness left in you about relationships. I've reached out, done what I can to heal with my loved ones, let go of the rest. Every day I do my best to reach out to someone, be there for someone. I don't always feel reciprocated, but I know those are my own brain chemicals, not theirs. I know all I have to do is say "I need help" or "please help me" and they'll be right there. If I feel blown off, I don't sit and sulk like I used to when I was younger. I ask the TV to be paused and I start talking. We talk until I either get tired of my own voice or feel like I said what I need to say. No one yells at me, and I know my own tension is a burden so I try to reign it in. I don't put head games on my people because I know I'm the one with the personality problems from my mental health diagnoses, and I do my best to communicate clearly, effectively, and succinctly. I need you, I love you, thank you.

And then realizing all the changes I've been working on also helped-

• I changed my diet in 2011 and started healing my diabetes damage
• I started physical therapy in 2011 and worked on better mobility and endurance
• I have been working with a psychologist on depression since 2007
• CPAP has been wonderful helping me get my brain problems under better control as I'm learning to sleep properly
• Being on gabapentin has helped so much with the nerve pain that my anxiety levels have gone down in general
• Being able to see success in what I'm doing through stats gives me goals, something to work on, so I feel productive. I hadn't looked at stats on wordpress in a long time, so when I got a real question asking for help yesterday with a real problem, I got to work focusing on helping someone instead of whining about myself after surgery. And then I looked up my stats and was blown away. Aspienado is my most viewed wordpress blog. I don't like using wordpress and rarely check stats, and Aspienado is a work blog for my first book and mostly private. But what is available to read gets found, from all over the world.
• I also spent much of today downloading and reading a new book that I'm writing a review on, and I want to do a good job because I know it'll be seen over time by thousands, including a handful of directors, producers, actors, and a worldwide fandom. It's important to feel successful doing real work, and opioids through pain have made it really easy over the last 24 hours to focus on work. This is how it was for years, opioids and pain. I remember feeling good about being a difference to someone even with so much pain. Lately I've diverted into genuinely enjoying playing and being creative on a game server with a family of very diverse people, some with their own physical and mental/emotional challenges, but it felt really good getting back into writing over this last 24 hours. I'm glad I have built all that up to fall back on. I've come from hermit to twitter gang to facebook groups to #clanfam. I have a large network of people who care if I show up, and I love seeing them online, as well. I even got a phone call today and was elated. Barry is glitchy, too, like me, and we're both working on reconstructing how our friendship started. Imagine years of memories just falling right out of your head. We both know what that's like.
• And most of all on my list of how I've come to be at peace is my joy. I was depressed for so many years, at times quite severely, and I hung on so hard. Bunny's little face very day is my joy, and I'm glad I'm still here every time I see her. She's my baby's baby, my pet kid, my challenge, sometimes my boss, lol. It's very fulfilling when a little kid genuinely loves you. I guess I was needing that.

Through all these things I've been learning how to balance my natural innate negativity through embracing publicity, challenging my baditudes and praying to be good for other people. I have prayed for 2 things for myself through the years. Usually prayers are for other people or all of us or something, but 2 very definite things I have prayed for myself.

• Years ago during my worst illness and growing ugliness (hair loss, weight gain, attitude affected by meds and pain), I cried and told God if I must lose everything else, at least let Scott come home happy to see my face. I looked pretty rough for a few years, and I had to stop fixing my hair and wearing makeup. I couldn't afford nice clothes with all the money going out for medical, and we went bankrupt before I wound up with full disability. I was so depressed. God, please let Scott be happy to see my face, because I don't know how he can stand to even look at me. Well, my hair still hasn't gone gray and I barely have a wrinkle on my whole face and I'm 56. I've been told that being on estrogen therapy for 20 years can do that, but was also told I'd start aging very quickly after getting off those in 2012. Not really holding my breath resisting, still can't wear makeup, but I've been able to grow my hair back out and Scott and I laugh together about something every day. I'm glad to see his face because he's my best friend, and I guess and hope he's still glad to see mine, even when I still have bad days and get very cranky with him, and he doesn't deserve it. My brain is my enemy on those days, not him.
• I also reached a point where I prayed for healing. I was raised stoicly believing that to pray for one's own anything was vain, so I've never really prayed for my own well being. We are all here to learn through our suffering, right? Well, after some deep thought just before I met my latest doctor in 2011, just before Christmas of 2010, I prayed for healing. I had come through some very hard years of months and months of back to back viral illnesses on top of severe nearly unlivable nerve disorder pain, and I was reaching a point where I wasn't sure I could keep hanging on out of spiritual duty. I was breaking inside and could no longer hide it. I reasoned for a few days that if I really do pray for healing, I mustn't be stupid about it. God doesn't work miracles for us to toss it back. If I commit to that prayer, then I commit to true healing with everything possible I can do to help take care of myself. I wouldn't get better to be stupid about it and ruin my health again. One day I was ready and I prayed. The next day the holes in my pierced ears had both closed up. They had never done that in 20 years. I immediately decided it would be blasphemous to get them repierced and gave all my earrings away. From then on has all been positive progress. It has been long and hard, but I wound up with the best possible primary care doctor, got diagnosed immediately and fast tracked so the right specialists and physical therapy. Years of doctors before him were just struggles with very addicting medications and the long slow descent into the hell of premature aging, without hope.

So laying there in pre-op, I knew I am ready now. I've done what I've apparently set out to do in this life coming to this earth, and I felt at peace. I've learned how to heal relationships, how to take much better care of myself, how to network with other real people with success and hope in mind for all of us. And I want to continue that. I know I'll have brain crash days and be very mixed up and brain chemical spills splashing on others, and I hope they can keep forgiving me. I'm facing a future of dementia as I age, and since brain problems run in my family, I've accepted the idea that I need to keep brain training now while I can to be good for people before I lose more control of this wonderful machine I live in.

This is very long and right now my brain is tired. I've made it through nearly 24 hours of fairly high dose opioids and enjoyed it immensely, but soon I let it go again. Addiction is a bitch, protracted withdrawal will make me mean again, and I wanted to write these feelings out before I forget I had them.

goin nowhere in slo-mo

Part of the big lead up to surgery is covering all the bases so there won't be any medical mistakes or accidents. I'd love to go into it blissfully ignorant and trust that things will all work out fine, but of course I have just enough experience to know how those stats really work and not quite enough access to my own records (notes of interest) and medical knowledge (search engines and acing medical terminology and nursing school go only so far) to wring any confidence into my head. I'm extremely grateful I got such a good critical care nurse calling me for preregistration or I'd probably have backed out by now. I could tell that person had seen it all and knew every detail mattered for every possible fail rescue.

The propofol from a test last week screwed my brain rhythm, so I've been shunting through extreme depression and worse mood swings. Can't wait for general anesthesia to add to that. Plus the preregistration questions about chest pain and family history of everything cardiac and brain fail prompted responses as me being already there with the pain/fail stuff since spoonie nerve probs, pretty much whatever statistical outcome for more serious chest pain and brain fail during recovery might not even be noticed. I live with fibro of the chest wall and on meds to help control Lhermitte's sign level pain, so just saying 'chest pain' is pretty complicated. I won't even go into the brain part again.

 

And of course I'll be asking a nurse tomorrow to get a note to the surgeon to please consider a different pain med than he's used to scripting and then having to deal with protracted withdrawal all over again on top of recovery. While my support system at home keeps zooming around full blast over-planning, the main question is how quickly will I be able to be left alone again. Um... I just asked my husband to make sure I don't do anything stupid and not to assume I'm ok. I'm pretty sure my depression will be more severe for a few days with my brain coils all tangled up again.

I'm very much looking forward to this particular pain being over after surgery/recovery. I'm also very much looking forward to holidays. But I've already been through the kind of fail that kept me from driving for 4 months or being able to read or watch TV for a couple of years. I sincerely hope I'll be touching base as usual as soon as possible, but it may or may not be a few days. I don't know yet.

I don't have any contingency plans in place, so if I'm one of those weird statistical fails, oh well. The only things I've done for real are getting laundry and dishes caught up and the bathrooms cleaned, and untrusting everyone on my game server claims. Don't want to come back to my stuff pillaged if I can't log on for a week or something. j/k #clanfam Hopefully, though, I can log on and play through recovery for distraction.

Apologies for my rough week. A few people got caught in a bit of brain flux.

5 years from now

When I first came back out public I had a 5-year plan, and so far it's going ok, just on a slower track than I originally envisioned, but a much richer and more vibrant track, so I'm good with it. It hit me today that I haven't thought much beyond that, and here I am already past the 5 year milestone.

So- Where do I want to be 5 years from NOW? This is a game I've played with myself for a couple of decades, and it actually works because it makes me think about priorities and goals and stagnation and stuff like that. I got the idea from a survey I did once.

1) What were you doing 10 Years Ago?
Wow, the nursing school year.  I remember the big mystery over who was smuggling mummified cats out of lab, and practicing catheterizing fake people.  My favorite word was auscultate.

2) 5 Years Ago?
I crashed into the fabled midlife review crap I used to ridicule others for.  Can’t wait to find out why old people are saying “60 is the new 40″…  Sounds like a very loaded statement.  Let’s see how gracefully we can hit brick walls every other decade.  Heads up to the mid-30′s crowd.

3) 1 Year Ago?
Wasted out of my skull on medication just to be able to walk, heartbreaking end to an awesome friendship, discovering the joys of the empty nest, and plunging headlong into youtube fanaticism.

The year I took a break from the internet I did a lot of deep thinking about that stuff in reverse- where do I want to be a year from now, 3 years from now, 5 years from now kind of thing. I stopped at 5 because I really couldn't see past it. So many things in my life have abruptly changed or cut off and you never know who is next on the ol' chopping block and all the changes things like that entail, so I didn't force it.

I've done plenty of looking back and assessing how far I've come posts. I haven't really done any going forward that far posts. Part of looking and planning forward is assessing right now, and I think I pretty much assess right now to death, don't I? I'm done with physical therapy unless something changes, I'm continuing to self monitor with a medical team, OH, Scott's job finally sold so there's a little bit of a snip in the annual income, kiddos are in my house, and we're dealing with even more hard stuff, so this post is more an exercise in focus than actual planning, but this is a good way to lay down a foundation and set up scaffolding for that.

Let's get a direction. I could go in any direction, and a lot of it depends on financial independence (which my original plan was intended to help push). I have kiddos in Houston, I have people all over the world I'd like to see, plus things I'd love to do if I were able, but if I've learned anything it's Keep It Simple, Stupid. The simplest thing to do is sift top priority out, and that's kiddos. In the last 10 years I've seen my Houston kiddos what, 3 times? I think in the next 5 years I'd like to see them at least a couple more times. If I'm going to do that, I have to be able to travel and survive stepping out of my own routine and comfort zone into a different environment, and I'd really like to do that with more brain on. So of course, top goal for the next 5 years is be ready to travel. NO JUNK FOOD, no stupid mistakes like what happened with the new shoes being laced too tight, no wasting my money or energy on things (or people) who will make this priority drop into a lower place. And anyone who expects that will need to understand I might feel very crabby about making that kind of a choice. I used to be able to jump and go be with people through crises at the drop of a hat, and I did it all the time for a number of people, and I just can't any more. I need to be ready to say a polite NO and stick to my guns if I want my own kiddos to stay top priority.

I know this sounds trivial, but I want to be done with the junk in my room. Every time I've started going through this old stuff that has piled up (and a good chunk of it isn't even mine), more gets piled up on me. My room is like a catchall in a family of packrats. Granted, @bonenado is a very neat packrat, constantly rearranging the entire basement and keeping a spotless closet, but a lot of this stuff is pure junk in my eyes, and we're so busy sifting through more junk (Bunny is a funny cosmic joke on this whole thing) that I never seem to get back to the original junk I keep trying to get rid of. I used to have to keep organized piles of stuff from the bankruptcy and my disability case, just piles of EOBs overtaking piles of other stuff that never quite got done for Christmases and stuff, and it's just ridiculous now. It's been so long since some of that happened that I can now just burn whole sacks of stuff, but they're buried under more sacks of stuff that needed sifting out, including baby stuff and my mobile office stuff that keeps getting bombed apart. I finally taped my publishing contract up on the wall. I see it every day. I lost that piece of paper so many times because suddenly people in my house in the middle of sorting and writing. I need a whole room I can spread stuff out in that can be guaranteed no one will ever touch, but I have basically 2 feet of kitchen counter I've commandeered, a corner of a table, the dresser in my bedroom, and a strip of wall by my bed. Oh, and a corner in the closet I won't let @bonenado touch. I can't even tell you where my stuff is in the basement any more. I have entire music collections probably worth some money that have been engulfed. Everything ever done by the old guys like Bach, music from all over the world, a collection I dreamed of growing up and to this day have never enjoyed. I don't have the kind of life that allows me to have my own record collection out where I can get to it in my own house where no one will destroy it or move it or bother it, and it has sat for years down in the dark with the spiders. To get it all out now and listen to it- I'm trying to guesstimate how long it would take to listen to the entire collection in the few hours a day I actually get to be home, and that is usually interrupted somehow. 2 months? I'm guessing at least 2 months to listen to all that. Maybe 3. Chopin, Schupert, Rachmaninov... Yes, all the Beethoven, all the everything you ever heard of. I own it. I've talked before in the night was smashy about how I don't get to run my house the way I want.

dragging brain back into focus

Actually, that all reminds me of a very realistic dream I had a kind of long time ago that stuck with me and helped me let go of fighting for all that stuff.

I was a very old woman, at least for the time, and fashionably modern. I had all the latest in clothing, home decor, and lived very comfortably. In the dream I just knew this, I didn't see a lot of it. In the dream I was dressed to leave, in a sitting room detailed with brocades and dark striped wallpaper, velvet covered mahogany stuffed chairs, patterned prints and lots of lace, and I was dressed to the hilt right down to the latest dress boots, gloves, and hat.

I was looking around at all of it. I had to leave it. Something had happened (what?) and I had to leave all of it, and I detested the future that lay before me. Someone else would have all my nice things (the grand piano! the drapes! the imported carpeting!!!), and I was galled that I would be forced to step down into squalor. I kept looking around the room, cherishing the finery, cherishing my 'place' in the world, cherishing the quiet wealth dripping all around me. Cherishing my buffer against all the dirty world outside.

A carriage was coming to pick me up. Men would come into the house and escort me into the carriage, and I would leave this place and never come back. MY things. MY life. Another family would come in and mess up all MY stuff like a bunch of heathens. But I felt fine, even smug. In the dream I thought and felt all these things, and I felt smug that they would never take them away from me, never really force me to leave.

In the dream it was about sitting in that posh room and waiting. No one else was with me, no words were spoken, but deep down I knew that was me, and I watched myself like that, an ugly soul inside a beautiful home. Not one thought was wasted on remembering a person, not one moment of cherishing was about someone who was loved, not even a pet. All that went on while the clock ticked was looking around at the wealth and feeling smug that they couldn't take me from it. I realized after waking it was because I had overdosed on something and timed it for when the carriage would be arriving. They would walk in to find me dead, which would create a whole other fuss and stir, and technically I'd never have been forced to leave my house. Bah on them!

O_O I know, right. What a biatch. Well, I'm not sure what's up with the vividness of it and it really feeling like it was me unless possibly that's a past life or someone else's memories floating around in the night or a remote viewing kind of a dream, which I've done a few times, but whatever it was, I feel very strongly like I dreamed it for a very good reason, and that's NOT to make the same mistake again. In this life now I'm still very drawn to nicer things (not like I wish I had them but more like I feel that it's familiar) but shun them almost with repulsion and live a mostly immaterial life. I'm in a nice house, yes, but most of it is filled with hand-me-down furniture and decor, and not much of it matches. I'm not house-proud. I could (and have) easily lived in trailers and much smaller houses, and even slept on floors and in a car. I just have this really strong feeling that wealth is a trap for the mind, and that it ruins what we are supposed to be doing here.

I think the missed point is that every person is important. Every person is a wealth of potential. Every person is why we're all here, and it's the only common denominator in every other possible variable in our existences. To shun other people for things is to completely miss the point of existing as life. We may be autonomous beings, but we are still an interwoven part of each other in so many ways we can't even imagine.

For instance, I'm very aware in this life that other people create the things I enjoy. Other people labor over the food I buy, other people labor over the clothes I wear, everything I touch and see all around me is because other people are living lives and laboring. To cherish finery without acknowledging that people create it is, honestly, a bit silly. To hold oneself above others over materialism is about as silly as it gets. The materialism wouldn't exist in the first place without other people, the being above them certainly wouldn't exist without them, and the above ones can be ridiculously estranged from the very essence of humanity if they can't see this.

If I really was that old lady in a past life, I'm grateful I got past that. I'm glad my idiot choice to kill myself before I saw other people take my precious finery didn't ban me from going on to live a full life of loving people around me and learning to work together to solve our daily problems.

That was a bit off track of where I want to be 5 years from now, but I'm suddenly leaping to wonder where I'll be 5 lives from now. o_O Wow.

I know what I don't want 5 years from now. I don't want to be an idiot. I don't want to lose people over petty selfishness. I don't want to grow bitter and I don't want to wallow in being sad. I'm going to do a bit of thinking this month while I deal with this tummy ache that won't go away, and maybe I'll have some cool dreams in the meantime.

I want to still be here in 5 years. I want to be a positive force to reckon with.

getting my pre-crash on for the holiday slide

click pic for more
I'm actually trying to get the lame diamond hoe advancement on mo creatures
"Serious dedication- Completely use up a diamond hoe, and then reevaluate your life choices"

"The time has come," the Walrus said,
"To talk of many things:
Of shoes--and ships--and sealing-wax--
Of cabbages--and kings--
And why the sea is boiling hot--
And whether pigs have wings."
You can read the entire poem at
The Walrus and The Carpenter, which is by Lewis Carroll, from Through the Looking-Glass and What Alice Found There, 1872.

There are a number of literary interpretations, which I don't really care about and have nothing to do with today, but that quote popped into my head after a long night of forever-going-nowhere dreams about stacking black and white terracotta blocks in my stomach and going in never ending circles trying to find my car on a huge college campus and deciding I needed to let a class go before I failed another.

One of the biggest walls my medical team has run into with me is I genuinely don't know how to rest. I've been commanded a number of times to stop doing things, stop powering through, stop everything and just rest. And I'm supposed to do this on a regular basis anyway since I'm super spoonie, and I'm so used to feeling awful that I just keep going in my own very restricted way.

I grew up working pretty hard. I still got in some play time and grew into a prolific reader, but I wasn't the kind of kid who could lay around for it's own sake unless I was reading or guarding the livingroom stereo so no one would change the record. I'm compulsive even on my worst days, and it's all I can do to be 'lazy'. That was a big word growing up, and a nasty word as an adult, especially coming at me sideways during a couple of really bad spoonie years. I try to rest my body by keeping my mind busy on other things, and I've developed quite an obsession with powering through minecraft server salvage and remarket, despite having pretty cool plans for a few builds. Even in my sleep, now that I'm finally actually sleeping, I'm extremely busy in all my dreams.

Part of not resting properly is the underlying prompt to pass for normal. I want to be useful and available, and that means pretending to be able to keep up. Pretending means I hide how miserable I might really be feeling or how hard getting through the day and keeping up might be for me. Pretending means blowing off red flags popping up left and right and dancing around the distractions like minor bothers are bothersome and I don't want to be bothered kind of thing.

I had gotten to a place where I was doing pretty good. Last year was actually pretty good. I was exercising regularly, getting function back along damaged nerve pathways, controlling pain levels with good sleep, nutrition, and real rest. Because I thought I was doing so well, I jumped a little more into holidays, and by January 2017 I was hitching an ambulance ride one day over a pain in my abdomen. My main concern was that I could feel my heartbeat in a very precise spot deep inside my belly, and every time it started thumping hard and fast in there I would get breathless and super fatigued. Naturally, they immediately jumped on ruling out cardiac and a variety of abdominal emergencies, including aneurysm. I've been bad to blow off abdominal pain since I've lived with it my entire life (my childhood was miserable, part of my adulthood was worse), so once I saw I was cleared of anything immediately life threatening, especially aneurysm, I blew the rest off. Yes, I saw a notation on the CT about something I didn't understand, and yes, I blew off follow up with my doctor.

So for the last 9 months I've been blowing off worsening pain coming and going. I'm already very familiar with a number of abdominal issues and had already learned to control a lot of it, and I kept thinking, Ok, this is all familiar, it's nothing, just keep going. And I got through some pretty rough nights without telling anyone and pulled through some really hard days not telling anyone because I want to be available and useful and I'm in a position to be very helpful every single day. After years of full disability, do you know how good that feels?

October went over the top, and I still kept hiding it. I kept telling myself that awful throbbing pulse inside my belly wasn't an aneurysm, and that the hard pain moving around was probably just some kind of flare up, disregarding the fact that autoimmune flares in organs are extremely serious. I toyed around with not eating and taking breaks and other little things that didn't seem to make any difference but helped me just enough to keep faking it. I was able to fake it right up to my girls leaving for a visit with relatives, and within hours I was back in the ER because the weird rose up and spooked me and I was free to collapse into that state of uselessness for a few days if I needed to.

I know nothing yet, except that the tests and consultations are coming like rapid fire after nearly being admitted. All the years I've had so many problems and even a heart surgery, I've never been admitted. So I'm at home dealing with some quite remarkable pain and fatigue and hoping this doesn't escalate into emergency surgeries during test events or biopsies coming back with really bad news.

A lot of people have told me over the years that I'm strong and I'm brave. I keep replying back that I'm stubborn and brazenly stupid. I'm very lucky is what I am. I have the kind of mental and cognitive problems that enable me to survive hard stuff without crumbling into self destruction (a plus for neurodiversity and mental illness, guys), and the kind of personal physical and emotional history that has blunted me to pain and self recrimination, so of course I 'look' strong and brave. I'm surviving. Survivors do what they have to do to keep surviving.

It's very possible that I may not have any time for wallowing or guilt over this next month, and it's possible the only way to survive what's coming is to let a lot of stuff go and focus harder than I've ever focused. I accepted long ago that any day could be my last and I've felt lucky for decades that I'm still here. I have my mood swings, of course, but underneath it all, I know I've been very fortunate to still be HERE, saying things and loving people.

When I was on Xanga, I used to answer the featured question once in awhile. On September 23, 2008 I answered If you got a terminal disease what would you do? That might not be viewable on mobile, so I'll copy it here.

We're *all* terminal in the end. I'm a 'slow' terminal. I've already lost a niece who was born terminal but lived to 20, in spite of all medical odds. So define terminal here. I was diagnosed 20 years ago, I'm lucky I'm still alive, and I get up and face every day with progressing neurological deficit and severe pain througout my body.

So someone is asking, what would I do if I found out I'm terminal. Well, if a doctor told YOU that you would be completely crippled and blind in less than 20 years if you were *lucky* and didn't go into organ failure first, what would YOU do? I went to college and got my degree. I went on to grad school. I raised a child as a single parent and then remarried and helped raise another child. Every day I prayed that I would live long enough to see my children grown up. Every day I did laundry, made meals, and somehow made it through my day. Recently, just this last winter, I faced that I might die from liver involvement. But here I am, I'm still doing laundry and making meals. Slowly, with lots of rest.

What did I do? I faced it and kept LIVING. I didn't ask 'why me?', because statistically, why not me? Everybody's got something, right? I didn't blame God, I didn't hate my body, I didn't go on big campaigns to fundraise for a cure for my disease.

What did Stephen Hawking do? He helped flip the world of physics upside down. And dang, he's still alive, too. Some of us just won't die.

Being diagnosed with a terminal disease isn't a license to feel sorry for yourself. It's not a 'get out of responsibility' card that says you are now free to smoke and drink and do whatever you want to your poor body. It's not a sign over your head that says you get to go to the front of the line or a free meal. In fact, being diagnosed with a terminal disease is a sure bet that all your friends will fade away because they don't know how to deal with it, and that you won't be able to keep up with the fun stuff any more. So you take a good long look at your life, you learn everything you can about medications and nutrition and how your body works, you have a long talk with God, and you get real with the people around you.

If anyone out there has recently been diagnosed with something scary, bless your heart, but take a deep breath and face it. Have a good cry, have another good cry, and keep moving ahead. Say the things you need to say to your friends and family, on a blog, whatever, and get that safety net around you. Communicate with your medical team, talk to a counselor, and don't be afraid to ask friends and family for favors, and tell them thank you.

Oddly, for those on the brink and about to step over (I've seen this a few times), some feel the need to reassure the ones they leave behind it's ok, even though inside they are scared out of their wits. They can walk up to the bridge with you, but you step out alone. I think that's what we fear most, unless we're so sick that we're glad it's finally over.

Live your lives. 'Terminal' doesn't mean you're done yet.

Everyone who has known me online in some way has met this person inside of me, whether you knew it or not. I don't always talk about my stuff. I might bring it up a lot if I'm processing through something, but I don't let it eat me up. Life is way too short to sink into the quagmire of everything sux. Yes, stuff sux, but I don't want people to say *I* suck. I know I suck sometimes, I'm human, but honestly, I don't like myself when I suck, and I try not to be like that, even if my day, my week, my month, and even my year has super sucked.

I don't have to pretend for anyone. There is no 'have to'. I chose to pretend for a little while because I so loved having a useful place with people I love. But I'm stepping back now, and telling them to go on without me, like I have been doing my whole life in this house. I am part of the background, and I choose to let go of being in the foreground so that I can stay here and keep watching my people. I'm still here, still lurking, even in my own house I am the lurker. I see the stuff other people get to do, I live vicariously, and I feel very grateful I got to be here this long to see it.

Yes, I have regrets, but they're the kind that involve not having enough money to see other people and do things I want, and going there turns my soul black and makes me forget the lucky parts, so I refuse to dwell. Yeah, I feel sorry for myself for a few minutes and get a tear here or there, but I've learned from hard experience not to follow that trail through my mind because once I wind up in the Swamp of Sadness, I drag other people into the sticky mire with me and we all get stuck in yuck. There's no sense in that, it goes nowhere and solves nothing.

So I smash my brain into this kind of stuff. 54 days till Christmas, guys.


I'll share more when I know more. In the meantime, pure distraction. I gotta love all the things and all my people while I still can. 💝