North Korea is going to get coal in its stocking

The article that pic clicks to might seem unnerving, but at least it's not Skynet.

Whiny robots are unacceptable. Whiny robots irritate people. #transparency is one thing, #uglytrewth is another. I will quickly power point the current root causes for whine and move on.

• Post acute withdrawal syndrome. I'm only 2 weeks out from surgery, and less than that back off opioids.
• Nasty headache.
• Lost more weight than I went in with because virus on top of recovery and couldn't eat much between the two, imagine how hungry I am.

And now I will entertain myself, like I've been doing for years when I actually had no one to talk to.

Stick Death Run - Push the Death-O-Meter to the limit

Goes to this-

click the pic to get to the game

Or how about an HTML5 version of the original Lemmings game, including the original sound?

But you don't have to load the game to listen to the music!


So when you have arthritis in your cervical spine and a history of trigeminal pain and they do airway for surgery, then have you lay in one position for extended time, the resulting fibro flare is off the wall once the drugs all wear off. Not whining or anything. Just saying. The Lemmings music in my headphones is helping. It's like a brain stim to distract me from paying attention to my nerves pinging over and over like BBs pelting the side of my head.

What was I posting in the old super pain days? Lemme jump back a few years and grab something.

Oh, here you go, my old Sikes and the Alien Nation (all the youtube vid codes got wiped in the Xanga server move). You might not be able to see that on mobile. And that post led to Gary sharing something I put into another post at EMP threat- imminent? Interestingly, just yesterday North Korea demo'd they can reach anywhere they want now with a missile, and next comes a nuclear warhead 'test'. You guys know that 'testing' a nuclear warhead in the atmosphere above the U.S. would knock our power grids offline, right, not to mention the fallout. So I was saying that back in April 2009.

Well, full circle I guess. I ran into Treat Me Like An Athlete, and I'll pull part here and leave it at that. This is an excerpt, because I was still voraciously super wordy back then and this is only a part of that. Bluejacky wasn't a top blog or anything, but got really good traffic on some things, and it was the first blog I tried being both public and myself on, although back then I never shared who I was anywhere else.

Ok, guys, I felt mean the other day, so I'm gonna partially retract and make an apology, but not because anyone got hold of me and demanded one.  And I'm not doing this to get attention from anybody, because I've got recs and comments turned off anyway.  I made a post called 'puny' blogs, which I still stand by because I'm aspie and that's the way my head works, but I can look back and see that it was still a punch below the belt, and I feel like that's not who I am and how I operate.  I'm not trying to do ~this~.

And here I put South Park's infamous cripple fight, which is now blocked for content rights stuff, but here's a snip.

I'm a big believer in the whiny crabby people being the ones who survive.  I have watched others 'wisp away' under the burdens of their illnesses, and even though med info pages on the internet insist that things like lupus and fibromyalgia are NOT terminal, those others I knew have passed on already.  I'm still here, and my whiny crabby butt says hell yeah it's killing me, and dang if I'm gonna lay down and let it.  I'm not against anyone talking about their stuff on their blogs, that was NOT what the 'puny' blogs post was about.  I've got a private blog popping with my crap, and the reason it's private is because the things I say there are things that help me survive, and that includes my black side, my bad attitude, and all the mean feelings that come out on my really bad days.  I don't want to share that with the public.  To me it looks like a big tangled mess of ugly confusion, probably because I see it all the time.  To the few allowed to sub there, it probably looks more like endlessly long boring posts about being sick all the time and every little thing that bugs me, which is probably a real drag to read.  Aspies can be notoriously wordy.

This next part is a big deal. Very few people dare to stick out there and really be REAL without apologizing or masking or faking or fighting. Just being real.

So it's only fair that I bring out where I'm at *right now*.  I created this blog to share information, to 'be real' about stuff like Asperger's, but as I've pointed out in a couple of posts, I feel the Asperger's is what's giving me the edge on surviving the illnesses I live with because I notice patterns and obsess over details and collect information to the point of being irritating.  So this week I'm going to assess what my situation is as of August '08, and then map out my plan of action for dealing with my stuff for the rest of the year.  If you have chronic illness and feel like you are spinning your wheels in the mud, this is how I have survived 20 years of lupus, severe fibromyalgia, and a variety of complications that include things like Lyme disease, heart surgery, and a really wacky immune system.

Kinda what's been happening this week. I'm talking to myself because no one else wants to talk to me like this.

The cold hard truth about illness is that it sux.  Just like with my Asperger's, I pretend to be 'ok' or 'normal' with my illnesses, too, because I learned real fast no one likes a whiny butt with a bad attitude.  That's the real me, but I can't be the real me without people walking away in disgust, and I have learned to hide the howling blackness so I don't scare the straights.  But the real me is the survivor.  I don't whitewash the crap I go through to myself.  I punch the virtual walls and grab myself by the collar and shake me.  There is a piece of brain that refuses to go down with the ship, and thank God I go through the really crabby stuff, because I think it has helped save my life more than once.

I actually do this to people that I love-

Because, damn it, it takes a mean person to survive a mean disease or illness.  And my gut reaction is that any time I see someone else whimpering with their pain, I want to kick *them* into full blown whiny shit kicking mode, too, so *they* can survive.  This isn't about life sux so someone owes me something.  This is about Indiana Jones hanging off a cliff and climbing back up.  It's about Jack Bauer breaking people's necks after he's been tortured nearly to death.  It's about Cat Woman getting fed up and raking her claws around rich bastards.  It's about ~*~surviving~*~.  I personally know a woman who wisped away to her death, refusing to make the necessary changes in her life that would have made all the difference and possibly given her 20 more less miserable years, in spite of surgeries and medications galore.  There are a number of corporate conglomerates, insurance companies, and pharmaceutical CEOs who aren't going to like what I have to say in this post.

True story.

Yes, the imagery helps.  If your senses are too delicate for this post, go away, and don't pretend to feel sorry for people you don't understand.  True story.  Years ago I was working in a hospital.  I was preparing to put my things away and step onto an elevator to move on to another floor when a couple of older ladies stepped onto the elevator with me.  They were dressed in nice clothing, had nice hair, nice jewelry, but they were not being very nice.  The lady they had come to see was on the cancer floor, and since I'd cleaned her room earlier and spoken to her, I knew she was terminal any time, and that she was distraught with a number of issues about being afraid, stuff about her family, feeling all alone since her husband died, etc.  So the ladies on the elevator (probably from this woman's church) were disgusted that they had taken a really expensive beautiful flower arrangement to this sick woman, and she hadn't even said thank you.  She had gone on and on about something going on in her family, and she didn't even acknowledge that they came out to visit her and bring her flowers.  And I'm standing there thinking- You expected her to be a gracious *hostess* on her death bed????  My God, people, the woman is ~dying~, and you're griping about her failure to say thank you for the flowers.  And that leaves so much wide open to wonder about, like how those nice ladies could judge someone in need like that and think they were better than her because they played a *social game* correctly.  They weren't really there to comfort a dying woman.  There were there for brownie points.  And I can't help but also wonder if the church paid for the flowers, in which case the nice ladies were even that much more ugly about getting that thank you.

Srsly how I feel about comments. I don't need pats on the back cheering me on. If you can't get out there and plow walls with me, just stand back before the bricks fly with me tearing that wall down.

So if you've never known anyone personally or yourself lived with chronic or terminal illness, your advice is not welcome here.  (My mom used to be very eager to give others advice on vitamin E and herbs and stuff  without any experience or medical knowledge whatsoever, so I'm a bit sensitized to that kind of zeal.)  This is partly why I turned comments off.  I don't waste my time with ignorance and pretense.  It's my 'aspie way'.  I am who I am and I don't care if someone gets upset about it.  The rest of you who agree with me, thank you, but I don't feel the need to show that off to anyone by hosting it in visible comments.

I go on, but that's the gist of it. THAT is where it originally all started. Pinky blog is a continuation of Bluejacky. Bluejacky is too gut punchy. Pinky said tone it down a bit.

click pic for more memes

Now where were we? I started out looking for fun, wound up with nukes and a crabby rant. I need to get back on track. I was thinking that maybe in December (tomorrow) I need to go in a different direction than last year. Last December I did a countdown thingy and facepalmed midway over the archive stacking up with identical title beginnings, and by January I was just weird. I floated into dissociation land and wound up on handfuls of meds and then spent nearly the entire year dealing with ignoring a real problem (surgery this month could have been done 9 months ago) and winding up with multiple problems swamping me because I was over medicated.

pic clicks to interesting demotivational collection

And I'm still talking too much, but surely I'll be cured by the time someone is free to hang out on game later, if all works out. My internet was pretty sketchy today. Thankfully, a fiber optic crew has been out this week getting the entire subdivision prepped for a massive fiber optic installation, and their equipment is all parked up and down the street in front of my house. They made it to my house just as it was time to stop and go home, so first thing in the morning it's going to be noisy. Can't complain though if I wind up with fiber for Christmas.

I am admittedly worn out from this post. I just want to lay down for a bit before I get on game. Hopefully I don't fall asleep and miss anyone. I'll pass along what got shared to me today, it's really cute.

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. 💝

I wanna wallpaper my brain after we get brain chips

Fighting with Jawn trying to get loaded into a resource desert and Jawn insisting the launcher is the jerk, not him, and me stomping off in a huff and then remembering Halloween is in a few days and promptly getting lost in a search and running right into this. Click for pink gothic awesome.

And then @bonenado stumbled out of bed asking if I tweeted that because he forgot to put the pizza up last night, kinda bending my brain around sideways going wut because #notaclue (I put the leftover pizza into the fridge last night, no big deal), and then I was like OH, that was 5 hours in the ER waiting room by myself the other day, lol. Turns out a particular pain I've been blowing off all month might be an ulcer and they actually nearly admitted me. The GI cocktail changed my life, I've seen the error of my ways, and suddenly we're all understanding the whole Jekyll and Hyde thing and started meetings about restructuring around my spoonie fatigue wall and getting me off the captain's deck before the Titanic asplodes a gasket into outer space and we all go spinning off into Whatthehelljusthappened Land.

click for funny sox

I still don't know for sure until I get a referral to a gastro guy, but if it's real, I've never had an ulcer before and this is new territory. My history clearly nailed the only anti inflammatory med I've taken for the last 3 years because it's a bitch and I was supposed to stop taking it last summer and kept sneaking a couple by every week even though I felt gross when I took them, and then this big pain exploded in my stomach a month ago during an allergy flare up and pred burst, and then antibiotic shortly after that, and that was the last time I had that pain pill because it was a bit scary. I'm so preoccupied with other pain areas and keeping up on the gerbil wheel around here that it was easy to just stop eating and ignore my guts. Guess that was a bad idea.

I was up 24 straight hours yesterday. I'm going back to bed.

I can tell this is important because I'm crabby

I got up and wrote this at 1:32 a.m.

• Waking up disappointed that a memory of a game I played once wasn't real, and waking up from THAT going aw, man because it meant the game I was still playing wasn't real, either.

And now it's after coffee and I'm quietly thinking.

I need to assess before I go down in flames.

• Neglecting my foot injury is stupid and I need to get to my podiatrist, like I've been saying since last summer. I'm now using a cane part-time after I'm especially stupid doing too much.
• Moving appointments over and over and over has got to stop. I have a broken tooth and since I pay cash it makes more sense to fix it NOW while it still hasn't got a cavity than do a root canal later and pay ten times more.
• Living without any kind of anti-inflammatory whatsoever (med intolerance) and continuing to carry on through outrageous amounts of pain above and beyond what I agreed to has got to stop. I'm the one with the disability papers. Me doing all the laundry and dishes is a courtesy that I'm not being compensated for, and it's costing me health points. I don't mind doing what I volunteer to do, what I do mind is not being compensated in any form for doubling the child care hours over what I agreed to. We're not saving money if I wind up in surgery, point blank.

I'm not 30 years old any more. I remember being 30, raising 2 children on top of chronic illness and college and later on jobs, and the cost/benefit wound up being me sacrificing everything I am so other people could keep doing what they want. I've worked very hard on not feeling bitter about that. Also, cost/benefit nowadays has a little more death at my door kind of slant to it, and I'm not comfortable thinking about going early like my mom.

I understand loss and pain and finding new paths. I am happy to support new paths. I wouldn't mind a little support back, and I don't mean telling a 4 year old to pick up after herself when someone else clearly doesn't model that behavior.

Oh, and on our 4 day break we are going on a big, bad spider hunt. Apparently the warm moist towels and dirty clothes on the floors is really drawing in the brown recluse population, and food all over the house will soon be supporting thriving cave cricket and ant colony surges. I really don't like bugs in my house.

lyrics Inochi wa utsukushii – Nogizaka46

it's all right

the description when you click is sad 😢

When this post elicited this response yesterday, I burst into tears because I knew someone actually heard me.

I've said before that sometimes my worst days are also my best days. This comment happened a few hours later.

There are days where family and friends don't know what to do with me, and I withdraw for all our sakes because my world is so black no one can handle me. Thank goodness for this distraction, which happened in the nick of time. Not sure if you can see it without a facebook account, although it is public.

I rarely reach a point where I'm listing possible names to grab on some kind of call or private messaging, but yesterday I was down to 3 names and ticking a list of what each person could probably handle on short notice without it actually killing a relationship and coming up empty handed. Having social media accounts on the internet was that little ledge I hung onto with one last claw.

Thank goodness time passes, but I wasn't released until I made it through the kind of long and detailed nightmare that spits a person out on Monday morning feeling really crabby. Thankfully, crabby is one of my salvation modes, and then there was coffee. And then I got busy and now I'm mostly ok.

#transparency My world doesn't feel ok. I'm pretty sure it's a virus and my nervous system is doing its best, but in my brain (nerve central) it feels like everything is so sad that I can barely make a plan, and I think I need to leave the house in 30 minutes for an appointment. I'm pretty sure my mood swings will be off the hook until this virus is over, and I very naturally fell into a writing rhythm dealing with it, like I have trained myself for years to do when I don't know what else to do.

On days like this, tears just stream down my face nonstop. Sometimes I don't even notice. I don't actually cry or weep, they just stream. When I think about it, I'm actually thankful because the nerve damage was bad enough for a couple of years not to be able to make tears at all in one eye. Tears are good.

I don't worry about what people think. No one asks, usually. I'm alone so much that there is no other outlet. People are busy and my stuff is overwhelming and transitory, and I know I can make it to another point in time where I feel better, because I have before.

All the same, I'm very tired, stuff looks and feels very hard, and I don't know if I can be good for people right now, so I'm winging it. I'm keeping it simple. I tell people around me to just tell me what to do and I do it. Tell me what time it has to be done, and I make sure it's done. I don't try to think beyond that. I trust that being told what to do and when it needs to be done by will be what I need to get through the day. Today I have several things to execute in a certain time order, and those are my stepping stones today.

This is the black side of autism spectrum egocentric narcissism in a spoonie body on a manic dip into a nonexistent abyss that feels really real. These are the moments where the word 'friends' doesn't save me, where my love for my family can barely shine a tiny light in a far off distance, and where I am the only one I can count on to save me.

God bless fans. This song has been saving me for so many years.


Time to run out our door.

honesty trumps stigma

I WANT ALL OF THESE
pic clicks out to way more pink mug stuff
I especially like 'live what you love', 'prove them crazy wrong', and 'make it happen'

I'm actually back up to my 2 extra large cups of coffee every morning. I was doing really well cutting back for about a week and I guess just hit a big ol' rebound over the last few days while I was juggling a few eggs and chainsaws. One of those sucker punch weekends on all fronts, and today feels like the 3rd Monday in a row kind of thing.

So I really went there yesterday, not a clue for hours that it was #WorldMentalHealthDay, lol.

I grew up in a world of stigma and have seen all the nasty things it can do to relationships and self worth. Inserting stigma into any convo is the fastest way in the world to sabotage, using stigma in social structure is the surest way to mass control.

Fuck stigma. I don't care who thinks or says what about me any more, and I'm going to keep saying honesty and transparency are the path to healing, from micro to macro. Everyone benefits from this point of view.

If you want to stay trapped in stigma (and bless your hearts, I know it is so hard), then realize that you make the conscious choice to allow others to victimize, harass, and emotionally (sometimes physically) rip you. Yes, I know that simply deciding to flip to the other side of the coin doesn't solve all the problems, but like I've been saying in public blogs since 2008- MAKE A PLAN.

Who are you?
Who do you want to be?
How do you get what you want?
What small steps will it take in between the bigger stepping stones to reach your destination?

Social mapping is foreign to me. I suck at understanding human interaction. That doesn't mean I can't learn to navigate the choppy waters, lurking undercurrents, and deadly rocks jutting up from below. I don't have to be shipwrecked because of a rock I didn't see coming. I don't have to stay beached in a place I never wanted to be. I don't have to be sucked into a downdraft and drown because someone else is oblivious or mean.

And I don't have to be mean about it myself. All I gotta do is walk away from it, float over the top of it, steer around it, and keep sailing to where I want to go with my life.

For some people this will mean literally leaving families. For others this means simply adjusting schedules. Any change is always disruptive, and sometimes our comfort zones are deep ruts carved into dysfunctional relationships for reasons. Could be money, could be physical or mental handicaps, could be anything. But tiny incremental small changes over time add up to big changes you never dreamed you could make happen.

I've spent the last 5 years blogging my way through small stepping away from hopeless helpless despair because I wanted to. I had an idea I believed (desperately hoped) could work, and yes, it's working even way better than I ever imagined. I put together my own care team, I put together a plan with clearly defined goals, and I asked for my care team to help me. This care team includes

• primary care physician
• chiropractor
• psychologist
• endocrinologist
• gynocologist
• neurologist
• psychiatrist
• physical therapy team
• massage therapy person

I sought out all those people (and my family) and told them they are part of my team, and that they would all know all the things all the rest do. They all have input, and therefore I've been able to successfully stay off meds that exacerbate problems. My favorite is the neurologist wanting me back on amitriptyline for nerve pain and my psychiatrist letting me know that would make anything mood related much worse. In the past I floundered through so much confusion with only one doctor trying to handle all my stuff, and wound up so miserable and sick all the time that I literally crumbled into immobility and loss of function. Her abruptly abandoning her practice for hospital work and leaving me dangling for 4 months set me on a path that ultimately saved my life.

I crawled my way back out of that, I'm honest with all my people about all my things, I ask for very specific help with reasons why and what I hope to get out of it, and they are more than happy to help me. No more confused wandering through a health care system for me, thanx.

I am #aspienado. I know who I am, what I want, and where I'm going, and I hope to be good for other people so that my life won't feel wasted at the end of it. The legal diagnoses I listed in my last post don't mean I can't make decisions about my own health care (including mental health). Yes, I deal with a mountain of stuff, but that doesn't mean I am incapable of seeking out advice and making educated decisions about how to go forward into making my life better, and I trust my team to guide me through what I don't yet understand.

The most important thing I ever did in my life was learn to ask others for help. I don't instinctively trust anyone, and I'm super fail at reading people, so that was hard. In order to get good help, I put together lists of questions I needed answers to, and I learned to keep it simple and focused so that I wouldn't overwhelm anyone, because I really am an overwhelming person when I get going, and often other people don't realize quite where they triggered a mass of confusion in me that tips my world over. It's called the KISS method and I learned it in high school. Keep It Simple, Stupid.

I have to run out the door, laterz.

see what I did there

Everything I'm doing in public online is normalizing mental health stigmas.

If you are an avid reader of Pinky blog and possibly even super lurkers continuing from previous blogs, you probably already get this.

If you are new to Pinky blog and it kinda looks all over the map and wtf, I am openly sharing what the inside of my head is like. This includes things that most people would never dream of sharing because they fear ridicule, haters mocking them, and judgment from loved ones and friends.

I'm not just writing words about it.

I'm not just posting memes and youtubes and resharing other people's words.

I'm not just compiling analysis and assessments and pov and judgments based on a personal agenda, i.e. asplaining to 'normals' what it's like being whatever dx they're curious about.

I am a complicated mashup of several dxs that include physical and mental disorders. Basically, I'm an autie spoonie depression blogger with some atypical quirks for autie spoonie depression bloggers. I grew up with questionably mentally stable parents (I'm putting this kindly, I hope), with religious culture clash, with social culture clash because of where I lived, with added traumas from my childhood lifestyle and a friend being murdered in college, with multiple injuries from a nasty car accident, with a first marriage to a very mentally ill pedophile, and with loads and loads of other things that are part of my life because family and friends have their own stuff, too.

The reason I'm sharing this way is because I realized a few years ago that simply writing out all the words that I think is explaining things actually epic fails to successfully reach the general public at large. Simply talking about autism barely even touches all that, and I'm pretty sure that is where we're all missing the boat conveying autism experience to the general public. I use my autism as a survival mechanism, and it seems to be working very well, although, yes, I have outstanding fails in my personal history.

I'm watching auties all over the world doing that now, writing millions and billions of words explaining.

I think we've said it. It's all out there now.

Now it's time to sift your personal stuff down to demonstrating. Show the world what is really in your heads. Don't just explain it. Don't stifle it all into "I'm autistic". Turn it into "I'm human."

I've said this many times. We all have something. Some of us live with multiple somethings. No one escapes this. Every single one of us on this planet is hiding a stigma of some kind, is living with something hard that goes against mainstream grain, is dealing with life and death and allthethings, and is going to die. Other people blaming conditions as being problematic things to solve is our mission- Change the world so that stops. Change that pov into loving acceptance. None of us actually asked to be here, none of us controls what we are born into, and I'm pretty sure the whole point of that is for us to make it to our final deathbed leveled up into wise wizard changing the world with miracles of attitude.

We are here to do something, be someone.

Don't dream it. Be it.

That came from a wise crazy person in a TV movie (I've never seen the play) and was originally ripped from a magazine. trivia

Now, go blog like someone's life depends on it. Lotta really sad and anxious people out there looking for ways to stay here and not opt out of life. We are the light shining in the dark for each other in a great big web world connecting all our brains now. We can do this.

the room

One of those days where the 3 different crucially unstoppable without supervised tapering meds I'm on are conspiring to make everything worse and every jot and tittle of my entire life's collection of regrets is rerunning through a screen I'm locked in a room with and can't turn off.

One of the interesting things I go through on days like this is suddenly seeing sharply where before something was blurred, and I horribly understand the mistakes I've made in relationships, like trusting and, you know, trusting. I trust people to get to know me, and somehow, somewhere, somewhen, that becomes a sort of misappropriation that sideswipes me and tips my world over. When I'm not locked in the little room like this, I don't see ANY of this. When I'm in here, and I'm always alone in my head when this happens, there is no way out.

I know there are people who live like this all the time, because their depression is pretty bad, and from the outside it looks like self sabotage and you can't stop them from believing all the lies they're seeing on the screens in their heads in their locked rooms that they can't escape. I have been very fortunate to have an escape hatch through some of my life, and that is simply having a reflex that cuts all that off. There is a way out of that terrible room, but it's unconventional. I think that is where my psychologist would point out the narcissism comes in.

I think I read this story, but the picture in my mind is so vivid I almost think I saw it on TV. But I can't seem to connect it to anything, so maybe I did read it. A man was trapped in a small room, like a box, with no escape. All the sides and top and bottom were smooth with no openings. There was no way to break through, no way to contact anyone. He could only exist inside that box, with the proviso that if he could find a way out, some kind of wish would be granted and he would never be caught like that again. After some time, that room was discovered empty, and when the man was found again and asked how he did that, he laughed and said he thought long and hard and eventually realized the box was not always there. Since his existence in the box was forever, he figured out that technically the only way he could move was backward and forward in time. He went backward to before the box was built. No one had ever thought of that before.

If anyone reading this actually knows that story, please put it in comments. I'd love to read it again, but I don't remember who wrote it. I think it was part of a collection of short stories.

I can usually sort of do that with that room in my head that sometimes makes me feel trapped. There is a way to just flip it inside out in my mind and it no longer exists. The depression still exists, but I'm able to cobble my day together, sometimes only a moment at a time, but I'm getting very good at not being trapped in it. Once in awhile, though, I have a really hard time doing that, and then here comes that screen and the reruns and the highlights I missed about what was really going on when I wasn't paying attention or the world was looking too blurry to catch it at the time.

When I'm not in that little room, I don't care about any of that stuff. I figure half of what I feel most of the time is pure chemical imbalance anyway, so why fret about it? If it's a wonky brain thing to be like this, I can usually just set it aside and do what I want, even if it's very restricted and I can't really do much. I can still choose it. But for awhile today, I was stuck. The only way out was to start writing.

Why do brains do that? Why do they rerun stuff and make us look at the things that make us feel terrible? I've wondered for a long time what the positive evolutionary adaptation of that happening to all of us sometime in our lives could be, because I see nothing positive about it. Why are we so good at feeling guilty or self recriminate or seethingly and self pityingly accusatory when we wind up in that little room? What is it about living under that kind of self torment that makes or breaks us?

I know who I am. I know what I want. I know what I need, who I love, and how to manage my life. But when I'm trapped in that little room, all of that becomes muddled and questionable and possibly even unreal, a sort of fabrication or dream, a lie that we tell ourselves when reality just really super sucks. But then when we're not trapped in that little room, we can see it for what it is, its own great big lie in a stewpot full of uber negative emotions. It's like a special sort of hell that we fall into and have to find our way out again, like a changing maze or labyrinth, and oftentimes the only way we can manage that is with some kind of medication and loads of support from people we can't see that we are repelling.

What gets really stupid is when medications tip you into that hell room and lock the door. Surprise! There've been a number of times that what got me through the day was realizing early on it might be the meds I'm on for something else, and then I can watch the clock and hang on to a countdown till those meds are more out of my system.

I am currently on THREE meds that I absolutely cannot stop taking cold turkey without winding up in a hospital for something very serious. Top of the list is the kind of seizures that can kill you, and right under that is psychotic episodes. Wheeeee. I'm in a little hell room on meds that can make me psychotic, yay!!!

I'm not very nice on days like this. I'm also not very good at juggling convos on the internet like this. And this is on top of autism spectrum. I reached a point earlier today where cognitively I could barely even function enough to write a short reply back in a game chat.

When I am like this, the best thing anyone can do is just hang out with me. I have a friend who is an expert at that, and today was fun because there were experiments blowing up zombies going on, and I enjoyed just seeing the reverb roll up in the chat. It was the perfect distraction. I have other friends and friends of friends who wanted to try to help me do something complicated, and for some reason when stuff like that comes up, it's always a right now drop everything else I'm doing multiple convos kind of thing, and there is just no way any of us would have survived that without me mutilating a few people. There is absolutely nothing anyone can do to help me fix that, and although it's very natural for people to want to jump in and be helpful, mowing me over in the process without understanding what I'm having to process through will only end in weeping and gnashing of teeth on my end. Every time. So the best thing I could do was keep telling people thanx but maybe not right now, keep my head down, and ignore the sad feeling overwhelming me because even though I'm in the middle of whatever, I'm actually the one being left behind, and no one understands that.

I'm coming off of one of the cruddiest weekends I've had in months, one of the emotionally toughest couple of months I've had in awhile, during one of the most challenging med years I've had in ages. I mean, good thing I'm in as good a shape as I'm in to handle all this, because I'm walking an edge that would have flatlined me a few years ago, and I'm not joking. That's not a joke.

I don't interact well on bad days. Some people know me well enough to say I can go downhill pretty fast even on good days. Yeah, I write millions of words, but I think maybe 6 people have ever heard how fast I can crash and burn over a phone just trying to have a real-time convo with one person. Now imagine an autism spectrum person living with a nerve disorder in her clumsy arms and hands and severe depression on a high pain day and meds going wonky trying to type quickly enough in two different group chats and one or more private messages while all the words are rolling (thank goodness I'm a speed reader) to have meaningful interchange with people who are shortcutting their thought processes and carrying on several other convos themselves while they multitask. It's almost absurd that I can kind of fake keeping up with all that. Throw in a misread or missed sentence, someone bypassing direct interaction with me and hooking me up with someone else who was told I need assistance with something I'd already told 2 other people I won't be doing right away, and there I go, full blown aspienado balking to a dead stop asking for more detailed info on who said what where and why, and alla sudden I'm a bad guy and no one's talking to me.

At least, that's what it feels like.

Enter little room from hell.

I won't share what went through my mind in there. I'm just glad I caught it as quickly as I did. The meds I'm on are a very bad combo, and I moved up a follow up with my primary care to talk about starting at least one taper asap.

resuscitation

I wrote this on Sunday afternoon of the 28th when Pinky blog was still closed.

click for wallpaper

So I put myself on bed rest, because I'm terrible for grinding myself to an actual standstill even when all the sirens are going off and defcon warnings are going on system wide. I've made it, what, about 3 years now since an autoimmune flare? I'm in severe fibro flare, and some kind of spinal nerve trunk flare, because my left leg and foot ache really bad and all my toes feel like I broke them on a coffee table or something, but so far so good on appetite, sleeping, and the usual restlessness. I'm trying to medicate more, y'all know I really hate that and any doctor would heartily laugh and then go, Yeah, NO, like this, and then triple everything I'm taking and then I'd morph into a lethargic reptile. I mean, no offense against reptiles, but srsly, I'd be like that.

Played single player for a little while in between surgey power stuff because big storm last night shredded the forest a bit and threw a few branches around, hit a bored jag and dug through wallpapers for awhile, then played around with the search bar, plugged in variations of Pinky, by the way here's other Pinky if you really wanna check her out, she's actually pretty cool.

Anyway, I'm flipping search engine pages and run right into 'pinky, guerrero, hypertorus, rulz- giphy' and thought, hm, I've never loaded anything to giphy, what's up with that? So I went over there and saw that, indeed, there was Pinky blog listed as a source for this thing.

And it does click to the post I used it in, but MY post sources it correctly from blingee. I don't know how and why stuff like this happens, no idea if it's auto curated or someone manually loads.

K, just discovered I have more followers on Quora... I never go there. Not even going to link it.

Yeah, I know I'm talking to myself because Pinky blog is still dark, I'm just waiting for it to flatline. I mean, srsly, my stats have looked like a heart rhythm for months. Too bad most of it was from one source or that might've been cool.

Personally, even being a search engine queen and a super lurker and part time stalker, I have *never* opened up anyone's page multiple times a day, certainly not for several days in a row, much less for weeks and even months at a time, and even though I have actually been lurked hard in the past (my heaviest lurker back in 2008 opened my blog nearly once a day for 8 straight months, and I had full stat details every single time, including location and service right down to street address) by a number of people with no idea how in the world I could possibly be that fascinating, ok long run on sentence where was I. Oh, yeah, even with my own skillz, I've never been obvious. I imagine there are a couple of people who have noticed me because they're like me and pay attention and I was actually stalking a little bit, but dang, I never did it like anywhere even close to this level. It's completely not like anything I've ever seen in all the years I've been blogging. I'm very experienced with stats and being super lurked and even stalked.

~~~~~~~~~~~~~~~~~

Now it's Tuesday.

Monday was hard.

Ok, Sunday evening I got some stuff thunked out. This last month I've been snacking. A LOT. Especially this last week. On carby stuff. A LOT. Years ago before I got my diabetes dx, I remember all my joints hurting real bad and feeling miserable, and my doctor back then kept throwing prescriptions at me instead of letting me see an endocrinologist (she finally relented after several months and we discovered my TSH was horribly flying right out of the solar system), and it helped to get that med adjusted FINALLY, but it didn't fix all the things. I remember back then that she wasn't worried about my blood sugar reading, which surprised me looking back once I discovered she had noted my ketones were high. A new doctor in 2011 dx'd diabetes and my whole life changed and I started feeling better, and everything since then has been about recovery and healing and coming back from years of immobility and excruciating pain. My diabetes has been well controlled for 5 years.

Until now. I checked my fasting glucose Monday morning, was 110. There are jobs out there requiring their workers to keep their fasting glucose below 100, so you KNOW that's the best predictor of lost work hours. I started sliding all through May, since my empty nest routine has been skewed into a whole new lifestyle and I'm surrounded by high energy people eating very high energy food. If I really look at what I'm doing, I bet my ketones are going back up and that's why I hurt all over and feel so tired. I'm dragging through sticky blood sludge and backed up getting the trash out of my body, and simply calling this a fibro flare is just me being stupid. Time to get back on track.

Point blank, I did this to myself, and I know better. I created this internal misery that affected all my systems and other health problems and threw my psychological balance off on top of it all because I felt so rotten. I felt in the way, got super crabby and peevish, and we can't just blame all that on autism spectrum complicated with anxiety and depression. Diabetes affects brains. If I don't want to be a drag on my family, NO MORE JUNK FOOD. My brain cannot handle carb loads, and woe be to ye if that's what I'm doing.

Aside from that, Monday sucking was a whole lotta neurodiversity hurricanes going on in my area that would make for great TV. I just stayed out of it as much as possible. I know the brains around me only see the klumsy outside of me, and I don't always make sense, and I don't emotionally connect well, so they can't believe that on the inside of me I really do get how their brain styles shape their world views and that they can't see several moves ahead on the chess board like I can, and they don't remember and learn from the past the same way I do. They don't see themselves objectively, the way they assess their situations is different from the way I assess mine, and their missing gap is a vital problem solving skill set that I was born with because I'm autie. ADD and autie working together makes a great team, but when we're all stressed, it can be pretty disastrous. I know I'd have handled things better if I'd been taking better care of myself physically, and I see controlling my diabetes as first line of defense against life sucking in all other ways. I cannot have a good life if my brain is flailing around in sticky blood sludge and I hurt all over.

THAT is aspienado's problem solving skills. Start with me first, assess, organize, prioritize, schedule. Get my own stuff lined up before I step into trying to fix anything else. Other people's lives are their own business, but I can make things easier by smoothing out the wrinkles as they fly by, and that makes me valuable. I like being a valuable person. I can't be valuable like that if I'm stuffing my face with crap.

So here we go, #transparency. Going to spend the summer getting the fasting glucose back down, shedding a few pounds, getting my workouts going again, and focusing on positivity and feeling better. That's my job. Sliding into depression fueled by carbing out and chain reacting a serious disease across all my other issues is stupid stupid stupid. It's one thing to live with depression, it's another thing to coddle it and support its cancerous growth.

That was fun. What else is going on? Hang on a sec, I need to say something, if stalker person ever actually reads all my stuff instead of just poking me over and over. Dear Person Doing This- I'm not a mind reader, and I don't do head games. I'm busy. You could be Christopher Pike stuck in a chair pushing a button, or you could be a brilliant psychotic enamored with Pinky, or you could be a 5 year old with someone's stolen phone, or you could be... you get what I'm saying. If there is a point to this, it's getting lost. But if this is what I think it is, maybe this (below) will make sense, and if it does, then I hear you. And that is all that needs to be said as long as this continues without real change. All I care about on my end is what I got out of the flatline and then the resuscitation.

catch 222, or maybe 2222 by now, I've lost track

A moment of appreciation for our troops in Kazakhstan. We have a Lexx fan over there. I always feel a bit humbled when I see hits like that on my Lexx blogs.

Most of the rest was written yesterday, what I call 'live blogging'. I imagine the general public envisions 'spoonies' laying around on the couch being tired all the time, and oh how I wish that were the simple case yesterday...


This is a writing exercise while I deal.

Years ago, all my symptoms were a big vague nasty mess. Over time we've been sorting it all out, alleviating this, working on that, slowly sifting all the things down to specific locations and causes, which isn't easy to do with referred pain from nerve injuries on top of a nerve disorder like fibro.

Today is one of my tough days. It's not anything new, or particularly different, except that now we're much more aware of what's going on, and it's becoming so easy nowadays to connect symptoms to triggers. Once this particular thing gets triggered, the symptoms get very confusing. My blood pressure spikes to the moon, I feel confused for awhile, sometimes my throat hurts for no apparent reason, ears ring like mad, face goes numbish, a maddening itch behind my eyeballs drives me crazy, and occasionally some sort of headache shows up. I've lived with this for 35 years, and it's been weird enough to make EMTs jump and flummox doctors. I've lost count of the variety of imaging scans I've had of my head, neck, and brain, with no obvious causes. Things that keep being ruled out are multiple sclerosis, autoimmune flare in the blood vessels in my brain, strokes, tumors, syrinx of the spinal cord, bone spurs, whatever you can dream up, they've looked for it.

My latest conflicting treatment challenge is CPAP. I love it. I sleep so good with CPAP. My apneas are down and I'm having a really good spring in general compared to years of extremely difficult springs, but it's focusing my attention now on this other thing.

I survived being ejected from a car and lived with and tolerated thick scar tissue that grew around one helluva whiplash for decades. I've been through so much pain that it almost seems ludicrous to still be having problems since we've been able to knock the pain levels way down via several years of physical therapy and now sleeping so well on CPAP. The problem, as much as I can tell now, is laying a certain way that puts pressure on the craniocervical area for too long, and then spending the next several hours or a day getting through some pretty outrageous blood pressure spikes as that area readjusts to the pressure being taken back off from laying on it. CPAP sleep hasn't necessarily made this worse, but it's almost accidentally helped highlight it since I hold still much longer at a time in my sleep, and since it's also helping me feel better enough to notice more specific cause and effect.

I lived with that pressure for so long under so much duress that you'd think this would be a piece of cake. Sudden high blood pressure coming from the top of the back of your neck feeling squeezed right under your skull is technically considered a possible emergency situation in some cases, since it could be from so many dangerous things.

It's very uncomfortable living like this. I can hardly believe my normal everyday life used to always be this. I've come to enjoy relief from this more often that not nowadays, but once in awhile, all my attention is riveted to waiting out another triggered event as calmly as possible. There is nothing more miserable during this kind of event than an ambulance ride, strapped onto a gurney putting pressure on that spot through all kinds of traffic for at least half an hour (because I live in Mirkwood) and then spending another 6 hours in ER and finally being offered a pain med that I'm not supposed to even take because there is nothing else they can do, and the pain med super spikes the apneas, and then it's all about recovering from going to the ER. So... I'm blogging instead.

I've talked about other triggers I wait out on some days, like costochondritis pain mimicking heart attack or pulmonary embolism pain. Thank goodness I'm not having actual PAIN pain today, but it's still very unnerving. I've learned how to remain calm even when my blood pressure goes nuts and it usually comes back down over time. I'm still holding 157/102 a couple hours into this, and if it doesn't come down I'll probably go in. My neurologist has a pending MRI on order if symptoms change, and today was unexpected, so I've called and got an appointment for this week, but ER might just do it themselves if I go in.

And since this may be involving CPAP, I might have to pull my sleep doctor in for opinions. I keep telling myself people can live for years with this kind of stuff, and then a little voice says "Yes, and I already have..."

~4 hours later~

Triage just checked me in at 201/115, so I guess I made the right decision coming in. This isn't my usual flare response. Kinda going into overkill, so super flare maybe. I've been firmly removed from grocery duties going forward, per @bonenado. As careful as I've been not lifting Bunny or doing any heavy work, I guess something caught up with me and now I'm paying for it. (A 15 pound frozen turkey has inspired Scott to shut down all my grocery shopping for awhile... I make poor decisions when I'm shopping alone, and this isn't my first backlash on overstepping weight restrictions.) Welcome to pain management 501, where it's all so old hat that I'm the most laid back person in a waiting room full of people popping with emotions and misery. One guy got so hostile with fear and panic that security had to escort him to a private room and hold him.

I wish @bonenado would live tweet his thoughts from the waiting room. He'd be super popular if he'd live tweet at all, because his sarcasm is unique to him, kinda cartoony. I'm just glad he drove me in. I told him he could go home and come get me later, but he'll entertain me by alternately crabbing, sniping, and mocking in really funny ways.

I've reached nirvana. Everything is surreal and I'm almost floating out of my body. The pressure around my upper neck is unreal.

And the cosmos perfectly timed that with triage calling for Randy Marsh. It's official- I'm in cartoon land. Wo, and the cops just escorted that other guy out.

~~~~~~~~~

Ok, now it's today. It's not unusual for my blood pressure to spike during pain response. What's unusual is for it to not come back down after 2-4 hours, or to keep steadily rising. High blood pressure doesn't frighten me any more. I've lived with pain spikes for so long that it's become more drudgery than anything- oh, this again *ug*, guess I'd better go make sure I'm not heading for a stroke... You know, because my mom went through hundreds of TIAs before she graduated to several major strokes. So far I've never had one vascular accident, and my blood pressure has gone much higher than my mom ever clocked hers at. At the core of my blood pressure management is pain management, so this is a pain management problem. But I wasn't having 'pain' this time. Just that godawful pressure at the base of my skull feeling like my head was being pumped up like a water bed.

First thing is always look into what's going on in the area, and the ER doc x-rayed and dx'd neck strain (one doctor years ago couldn't believe I was walking around with a "sprained" neck, he couldn't believe I lived like that for years) and they mostly just waited out the blood pressure and sent me home. What was so weird to me was that this is the first time I've gone through that without PAIN.

Any big change in a major nerve trunk area is a big deal. Not feeling pain isn't always a good thing when the ship thinks it's going down. I *hope* this is a good thing, that I'm progressing into a more healed state, but even a mild sublaxation putting pressure on the nerve trunk right below skull can be ~not good~. You wouldn't believe some of the long-term treatment options some people go through for that kind of stuff.

Just a reminder- anyone thinking I might be making a big deal, just wanna see you live through being ejected out of a flipping vehicle, which I didn't talk about or bring up for YEARS while I was hiding all kinds of problems and challenges, and now that I'm aging through all this nerve damage, I'm finding out just how much suck can really suck. Every day has to be strategically planned or I have a very bad day. Yesterday was me dropping the ball.

Anyway, I'm fine, but my neck is super tight and the rest of the week is designated recovery now. Just rest and keep my workload light. I'll visit with my neurologist tomorrow (:edit: Thursday, lol, just discovered it's not Wednesday) and see if he wants to continue checking on this, possibly cave to a steroid shot in my neck if he suggests it (*ug*), continue with my home core stabilization exercises.

>=l Stupid frozen turkey... I can't even carry 15 pounds 25 feet from my car to the fridge.

Ok, let's focus back on having a good day. 😁 Special nod to a couple lurkers in Europe who I know have been fandom webmastering for years through ugmo conditions (I've super lurked you, too), and the rest of my day is scheduled out- be silly, play minecraft, fold laundry, be silly some more, eat something, get supper laid out, maybe get a shower, be extra silly and play more minecraft at the same time before my people come home, and then love them while they eat supper and decompress from work and daycare, because they're why I'm still here hanging on.