I forewent buying my usual bag of chocolate chips this last week and everything has gone all to hell. Well, I'm doing great managing and juggling and accomplishing, even organizing, but I'm mentally smh (any interpretation on that works just fine) and accidentally doubling or skipping coffee, and once that slippery slope sends me slithering sideways surreptitiously (I have honestly never used that word before, I hate that word because it's used far too much in all things print- seriously, do you ever hear anybody actually use that word in real life?), nevermind, went off course and I no longer care if I properly finish that thought or sentence.
~ the next day ~
I could go on about how cool it was getting my own radishes out nearly all by myself in a number of years and everything hurts because physical therapy but look at me go, or I could just drop it and move on.
Not sure how I'm doing it because super fail on several fronts, but actually remembered to get my own daughter's Mother's Day fleurs ordered before the blackout dates (nothing like having a child right on top of Mother's Day and not one florist would get flowers to her after a really rough delivery 5 years ago and I have somehow mixed up my days ever since), and I can't even with the rest after so much dealing last month. I'm closed for the rest of this month.
Ok, not shut down entirely, just not dealing with any more gooey sappy reminders of sad for awhile. Done with sad. The hangover after finally processing a big sad leaves me nothing for anything else, so this month I am hiding from the world party in a metaphorical bathroom.
I can't have both a nice and quiet life and a life well lived, says the cosmos. I woke up to a skirmish between head and heart. My heart yearns, my head is going off like a drill sergeant. I ache for peace, but the screams push me back out.
The typo I just overwrote was super Freudian in a very creepy way, but my skin says it's too tired to make any hairs go up. I ache for me.
Last year was a long muddle. I know what I have to do to unmuddle it. I need to love the pain again.
I see my neurologist today. 'Real feel' is currently 1 degree. I can't get my house up to 70 degrees inside even with 2 space heaters added to central heat. Getting out today will be fun.
2017 was the year I whined and sat around degrading on pain meds after years of steady improvement. 2018 is the year that 2017 becomes a bad dream.
Little steps to a better future. Embrace the pain that is me and get out of bed, get out of the house, get out there and BE. I want my life back. No one is going to hand me that, and 'real feel' in my very real life is that I especially won't be coddled. I will say this one more time- I was babysitting a very hyper child all by myself only one week out from major surgery. No one checked on me, no one brought me food, no one made sure I was safe in a shower, no one asked if I was ok. I know exactly where I rank in importance and scheduling in the world I've allowed around myself, and I'm going to own it this year. My life, my house, my future. My decisions.
Probably NSFW. I should probably have a trigger warning on this whole blog, actually. Caution: lotta crazy scary scifi reinterpretations and possible applications, but it's not what it looks like. Metaphorically. Meta. Get it? Sweet, now I can title this.
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.
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.
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.
Ug, my internet is so screwed this evening. I kept trying off and on for an hour to get an easy download and kept timing out so badly that I couldn't even pull 3 minutes of video. I tried to get on server and it was so difficult just completing login that once it took nearly 5 minutes just for chat to show up. I've got a live draft coming up in a few days, will I be able to even attend? I might wind up having to just auto draft this year. Our broadband host is offering discounts, so it's not my laptop, it's not our setup or router, it's everyone on this service. We're basically hostage since no one else offers service to my house.
We got a ton of stuff accomplished around the house today, though. Major space reallocation around the kitchen, buncha stuff moved upstairs, one major appliance sold and another installed, closets and drawers and cabinets organized.
It's difficult to tell where I am with therapy progress on the atlas/axis cervicocranial thing. The nerves around my face that went numb in 2004 and then redeveloped all new maddening itching and tingling and numbness for years afterward seem to be waking up. All that is lately replaced with extremely tender sensitive areas that seem to feel normal otherwise, but I can only guess since I haven't felt what normal is since I was 19. It's coming across as kinda painful (think scalp sensitivity where it hurts just touching your skin, but all over my face too, almost like I'm bruised or something), but it's also actually kinda feeling like the nerves are able to feel more correctly for the first time in years. A lot of the painful ear stabbing sensations have nearly stopped. The tinnitus is unreal and my sense of smell is going in and out like it can't decide. I had lost quite a lot of my sense of smell and taste years ago, and it's interesting when I suddenly notice something smells really good or I'm hearing something I hadn't noticed before. My hearing used to be super awesome, like 110% on hearing tests, and then I went through the nerve fail and could barely follow tv because I was like so consonant-dyslexic with my real time hearing processing, and now I'm keeping up way better again without having to pause every other sentence making sure I heard it right. The first season of Continuum five years ago was so difficult to audio process that I was pausing after nearly every sentence. @bonenado got a lot of gold stars that year for being so patient with that. (The broohaha years ago over an interview transcription I did- no one had a clue how labor intensive that was for me, and how many total hours that took.)
The hope is that this will also positively affect all my nervous system going on down, like arms and legs. Still difficult to tell, but there is enough relief overall, however vague, to keep a thumbs up on it. The hardest part is the local area itself. When I whiplashed just beneath my skull (usually how people wind up paralyzed or killed), I damaged so much soft tissue that it got really swollen in there and laid down enough scar tissue to prevent my C1/skull area to sit together properly, and I have lived with that horrible nerve pressure for decades. If you need any kind of context, this is a good site to check out.
I never talked about this for years and it took awhile for me to start getting really honest on Spaz and Pinky blogs about it after I committed to physical therapy a few years ago, and even then no one knew quite what the real truth was when I first brought it up. Between a chiropractor (started 2007) and a physical therapy team on hospital campus, it has taken ten years now to reach this point, where we are able to successfully work on this area directly, and it is still very slow work. Before I started this, I reached a point of needing help with everything, including self care, and had plunged into such long illness and terrible depression that I didn't believe I would live much longer. The pain itself was rough enough, but piled on top of it were complications galore, which I've been untangling on my blogs. It's rough and parts of it suck because I'm really feeling that nerve reverb as the pressure is slowly being trained back off and the nerve tissues continue to heal, BUT I'm so busy now keeping up with everything going on in my house, how can that not be a miracle? It's still so very hard, though, and at what seems like a dead run. And now it's today.
Pain can be a wonderful teacher, a powerful motivator, and even a good friend. Pain has been part of who I am since I can remember. I've chosen pain over relief based on cost/benefits so many times, and I'm proof that really deep hard unremitting pain can be survived. If there is one thing I absolutely know, it is pain. I can see it in others, I can read it in animals, I can feel it when I'm near it. I will have a few things to say about pain and the cruelty some use to inflict it as a learning/teaching tool, as an entertaining toy, as a regenerating profit cycle, and as one of the despairing anguished who cried in the night not knowing if my existence was heard.
In the meantime, I'm quietly growing my wealth on the game server and even more quietly building beautiful things while I very, very quietly keep molding the real build I sculpt out of words.
Oh, yeah. Sploit and Batman are still on high ground with #Harvey. I can't begin to describe how stressed out I was going into this weekend. I'm finally starting to relax a little.
I am loving this vid. I can't believe how buried on youtube it is and how few views it's gotten, because it's very cute and really quite good.
I started this post yesterday. If you have depression and are easily triggered, please exercise truckloads of caution if you try sticking through this post, ok? I really went there.
From a post I made 4 years ago at janikabanks.xanga.com. The html is abysmally screwed, but I fixed what I could. Only one person has ever been told what I intend to do with this, so the private title is in the queue and one of the projects I'm working on.
My fave thing ever is pirates. I read everything I could get my hands on about pirates when I was a kid. Captain Blood by Rafael Sabatini captivated me at a pretty young age, and I absorbed the The Count of Monte Cristo by Dumas (j'adore Dumas!) almost through the pores in my skin. My fave ever Pirate movies are Blackbeard's Ghost, Yellowbeard, The Pirate Movie, Cutthroat Island, and the Pirates of the Caribbean series. My other fave 'ship' movie is the Horatio Hornblower series. I didn't grow up anywhere near an ocean or even a lake, but I have this kinda private thing about ships. I'm working on my own thing now, but a few years ago, this is the kind of stuff I liked doing.
Ok, hopefully that doesn't kill the wrap on the rest of the post. I had to go after those words heading clear out to my livingroom and wrestle them back into the corral. *preview* Ah, yes, working just fine now.
This week is already weird, and I desperately need to pull back into a touch base here, so let's just start off with my face feeling prickly and itchy. Nothing puffing up, yay! Just the nerves. The first time it ever happened I was in my late 20s and my doctor tried me on several different meds until we finally just gave up. The phantom itching is maddening, and after a few years of absentmindedly scratching around an eyebrow or beneath my lip or by my nose, a doctor commanded me to STOP before I wind up with cellulitis. Thank goodness it never got to that point! SHOULD YOU SCRATCH THAT ITCH? MAYBE NOT
So I switched back to beta blocker, histamine level spiked (yay, allergy season!), and now my face is all itchy and prickly for 'no reason', but it's all the same trigeminal spots I've always had to deal with, so apparently neurontin and cartia together impact my nervous system differently than neurontin and my original beta blocker dose together. Incidentally, I can't prove anything because my weight stayed steady this whole month, but I've worked really hard on the 1500 calorie thing, and I seems like whatever I lost got replaced by fluid retention. I swear I'm more jiggly now. Not cool.
Med changes, yo. At least I'm not craving brownies like last month. But srsly, where's the tranq gun for the maddening bursts of itchies sparkling up behind my eyeballs. Ok, enough of that. I'm very seriously thrilled it's not doing this down my throat. Those kinds of days are terrifying.
K, got on here to FOCUS. I need a super power point, hang on. (Coming back to this sentence during proofread and just shaking my head.)
Ok, Autisable went live today. I'm not staff, but I was one of the early contributors. Not paid. This is not for profit, I think. Anyway, Joel started this community of networked writers on Xanga before the big server move, and I've watched him survive and rebuild pretty much from scratch, and that inspired me more than just about anything to hang on, keep working on my own stuff. Again, for those of you who've never lost everything you've built in a server move, including specialized coding and a really excellent cutting edge mobile platform, the stress is unbelievable. I would compare it to an internet earthquake or hurricane or something, just everything wiped out and gone and having to pick up shreds and pieces and literally start over with a new foundation.
MY POINT. See what I mean, I'm super scattered because this itching is so distracting. Anyway, I've created a special Aspienado facebook account to share my Autisable submissions. Autisable is what inspired Aspienado to come out in public and start working on Existential Aspie. My tagline will hopefully be the preface to my book.
If you could go back in time and do one thing, what would it be? I would go back and give my mom a big hug and tell her everything is going to be ok. –Existential Aspie
I need to review a few other things going on. Organization!!! Thank goodness for back to school. Ok, went to my phone to find a pic and played on FB for 15 minutes. Here we go. This is my back to school purchase, along with a CD holder not pictured (because I have CDs scattered all over the house and the cases are getting destroyed and I keep losing CDs the way people lose their keys). I've pulled together a reading list for the year (sploit, I'll send you the books as I finish them, so don't buy them), and I've decided I need to get back to watching a show during the day while Scott's gone to keep me off minecraft when I go ditzy, because I've lost swaths of time 2 days in a row switching back to the beta blocker. I need to focus back on time awareness through the day, so I'm creating a new syllabus for myself, hopefully it'll get me through the holiday slide intact. (omg, I forgot about the time I discovered a search for 'holiday slide' landed me back on this post.) But yes, I do need to share actual real brain stimulation going in for all the people (including my psychologist) who wonder if I'm taking the broadcasting out part of my life too seriously. You people really have no idea what I actually do most of the time, so guess what, I'm giving myself book report assignments through the fall.
I think I shared my new backpack on twitter last month, hang on. Yes, here it is. Aspienado is really bad to get into ruts and use things till they're so messed up or messy that I'm a walking disaster, so freshening up the ol' bugout bag was a must. I treated myself since my last backpack was a $3 leftover after Walmart had been savaged and left nearly bare, and it was initially targeted for ten year old boys and really didn't hold that much. This one holds my whole house.
I've also liberated my new umbrella of its tag. I've been using really old and almost broken umbrellas since college (I cannot believe I've had that blue umbrella since the late 80s, THAT tells you a lot about my ruts right there, and the green one has to be nearly 10 years old itself), so when I saw this one in a pharmacy, of all places, on a rough day, I pointed to it and @bonenado totally got it for me. I'll have to take care of it because the entire handle is wooden and has an auto button to pop it out, very James Bond kind of thing. I know, some of you are questioning the whole going more feminine thing when I've been neutral for so long, but butterflies and roses have special significance in my family, and I really did have to have this. Plus there are pocket watches (me and time problems) and keys (key to the Lexx), so yeah. hello goodbye
Grasping that becoming Pinky to the world is how I am emotionally surviving isn't necessary to understand, but Bluejacky coming back out to play now is extremely significant. It means I'm healing.
At least in my heart and soul and mind. My body...? This is a hard summer guys. All I can do is just keep writing until I literally can't any more. It's too hard to tell if I can still hope for progress, because I'm sliding down so hard I'm not sure I can finish what I started. I keep telling myself hang in there 5 more years. I can make it 5 more years. I mean, it worked when my kids were in grade school and middle school, kept shooting for target dates and actually kept making them, and even though I honestly never dreamed I'd make it this long, I know the only road forward is harder than ever now. blinking in the light (the original reveal)
If you've never read Hinds' Feet on High Places, THAT. @bonenado and I had a really good talk over this last weekend. If I'm in final sprint (and it could be another ten years, I can't see the future), it will take everything I've got.
I'm just glad I'm getting all my head stuff worked out. I feel like I'm getting all my homework done on time. Assignment: Earth- You will occupy a body and learn to use this body to play well with others, share your toys, and learn wisdom. This will count toward your dissertation on Why We Are Not Mean To Each Other. Once you've satisfactorily completed this assignment, you will level up and move on to other things. Some call this the Hard Class, the pass or fail class, but think of it as extra credit and you'll be fine. You'll each be given Time and Space allotments to complete this assignment, and the only thing you'll be graded on is whether you manage to pick up on what becoming an autonomous being is all about. The only way to learn this is through experience, and you won't be able to take your notes with you. Good luck.
I need to be sweet and remind a few people that I'm not critical, ok? I'm just facing that I'm heading there. We don't know when or how soon, watch me make it to 80 now, right? But for those who are still pretty new to the real me, yes, this is actually how I have lived raising my kids, day to day, week to week, month to month, and year to year. I haven't taken a single thing for granted since the car accident.
But the race is on. And I wanna win.
All this writing encourages me, so if this is bothering you, you need to go do something else, ok? I'm *focusing*. Writing is just as athletic as any other sport. You plan, you practice, you assess, you practice some more, and you keep doing it and doing it until you're good enough to play hard enough to win. Sorry so long, but it's just that kind of day. Minecraft isn't helping right now. And I don't wanna talk about this on twitter and facebook. I only link it so it's easier for people to check on me if they want to. BACK TO SCHOOL. The syllabus construction. So among the reading challenges and rearranging my days so I'll be more aware of time and consequently more productive, I have several projects I want to finalize this year. One of my biggest challenges is this mobile office and the sudden interruptions. I've been working on organization for years, and it's amusingly hitting me that it's been so long that most of what I need to organize is truly useless now, and I can start throwing a lot of it away. When we were going through bankruptcy, we had to compile and keep tons of information, same thing again with my disability case, and between insurance changes and EOBs and all the junk mail on top of it, plus bank account stuff and keeping bills straight and forms filled out in timely manners, and then taxes and renewing car plates, and all of this being regularly poofed like leaf piles through birthdays and holidays and sick days/weeks and all kinds of other stuff, and then tech fail, omg you guys, I have lost my book contract in the shuffle so many times... Yes, both digital and hard copy.
But I have to keep my head on straight enough to remember to write groceries down on a list and then actually follow that list, and I'm failing simple list goals just running to Walmart, so of course I feel overwhelmed. But look at all the stuff I keep getting done. Look what I did this morning. I grabbed content I already had and used it to help promote a site announcement. I feel good about it, I feel like it helps point me back in the right direction, and I feel like the rest of my day is ok now because I spent a few minutes doing something useful. It doesn't take much, just a little bit every day. Five minutes. It really does add up over time.
So, August. My anniversary is tomorrow. I'm glad I wrote that, I got @bonenado a card and hid it, so now I'm going to go find it. I'm usually too scattered to even get a card, but I actually have one this year, and now it's out in time, instead of laying in a drawer, yay! Ha, it might be the last one he ever gets if I keep staying this scattered, though. You wouldn't believe how utterly ditzy I have felt the last 6 months.
*screaming gear change because that made me think of brain fog*
I was in my 20s when I was diagnosed, and I got that diagnosis within a month of seeing a doctor who fast tracked me to rheumatology because I'm such a severe case. They knew next to nothing back then, even though they already had criteria established on how to diagnose. I know from experience that getting back to a normal life might never be an option for me, because nothing we've ever tried has worked very long helping me pretend normal is even an option. Fibromyalgia Has Central Nervous System Origins
I got disability on the first try. What Does It Take For Fibromyalgia to Qualify As an Impairment Under the New Ruling
What I'm saying is that I'm one of the first patients in the medical field to be diagnosed so early and live this long with it, and they don't yet have a 'lifelong' definition for this kind of thing. They're talking about cases that last at least 3 months and still insisting there's a way to live a normal life, and I'm not seeing anything legally or medically definitive on someone who is 25 years in on something like this. There is no research on how people age through this. It's still only conjecture, and they're still studying it. Fibromyalgia linked to decreased brain connectivity
We've ruled out MS, AS, RA, and Lyme is still being considered a nonplayer even with antibodies. This article is only a year old. Fibromyalgia now considered as a lifelong central nervous system disorder
It's about defining what living a normal life actually means. I'm fighting to stay functional in my own home. I think for me, it's more about living a useful life. What can I still do when it seems like I can't do much at all? I can type words.
I have made it through at least 2 1/2 hours of what I call a really rough morning. I was kind of laughing with another snarkalec one day about how those of us in the most pain have such blow off phrases for how we feel, yet those of us who live like this totally get the code. I have a pain rating system that most people don't have a clue exists. The doctors use a 1-10 scale, and I insist I'm using the Princess Bride scale (not to 50!) in a 1-10 world, and on 'really nasty' days, that line runs right off the scale and keeps going around every wall in the room. If I'm 3 walls over, it's a shitty bad I'm in hell kind of pain day, and there's no way I'm going to talk about it beyond calling it a nasty pain day. There is just no way to convey context in a world where simply having a migraine and an emotional meltdown rates a 10 (and I do apologize, I don't mean to trivialize that at all, it's just I'm so experienced at that being a side order on a main dish of fibro). If I say in a doctor's office I'm at a 10, I'm either violently throwing up, unconscious, or spasmodically weeping with no way to console or comfort me, and believe me, I have scared ER doctors even after pain shots.
Pain scales are extremely relative and subjective, so I've had difficulty trying to convey meaning to what I'm attempting to communicate to a doctor who hears '10' from people calmly sitting in their chairs without even a facial flush going on. That has actually happened right beside me in a triage room. The woman saying it looked bored. My blood pressure was 193/110 and pain was nearly blinding me, and it just sounded so stupid for me to also say '10' right after her when I was obviously feeling so much worse. I once told a triage nurse 12 1/2 and she thought I was joking. You've no idea how badly I hate that 1-10 pain scale. That's why I invented the Princess Bride pain scale. If a doctor or nurse has seen the movie, they have more context, and then we can talk about me being in the 30-40 range on a decent day. Just because I'm able to function and smile doesn't mean my pain level is a 5. Actually crying driving in to appointments rates a solid 8, and from there it's minutiae to me. You know how on the earth timeline of 4 billion years humans have only existed in the last seconds before midnight? That kind of minutiae. So much pain context is crammed into those last 2 digits. I'm like if there can be 50 words for snow, I've got a hundred different phrases for particular pain levels if they're looking for context.
I can handle big loads of pain. Some days you feel like body slamming walls and trees trying to make it all shut up, other days you curl up in the dark and just keep everything really quiet. Those are rough days. Really rough days are me not caring if I break something and it's all I can do not to break windows out of sheer need to smash stuff just for distraction. I can totally see how people just lose it. Nasty days are just past that, where you if touch me, you die, and one look will wither your soul and you'll think I never loved you at all because it will be so awful. Really nasty days are hanging on in hurricane days, the kind of days where it's so bad that even breaking your legs or slicing yourself up barely ripples your attention, when even the words 'self harm' bring out maniacal laughter because it seems so tiny compared to what you're already going through. If I weren't in this amount of pain, I would totally be a self harmer. And I know several self harmers, so I'm serious saying this.
But the really worst days are the ones where it's not even that bad and your brain suddenly goes through a chemical dump, and there's not one thing on the planet you can distract yourself with that could keep you from doing something really stupid, so you reach out to hang on to other people and hope to God someone's available, because you cross that blurry line into unreal numbers territory, and you can't be sure what you're doing is really what is happening because your brain is so tired and so fried from all that overwhelming screaming you went through for days on end that nothing seems real any more when it finally quiets down a little bit.
~~~~~~~~~~~
I stopped there for awhile to get a lettuce and turkey wrap and some cheese. The prickles and itching are finally calming down. Really thought this post was going a different direction when I started it. Oh, well. I could delete all that or just let it stand. I'm sure I spoke for a lot of other people feeling frustrated with spoonie stuff, too.
I'm going to make it. I can do this. But I need a nap first. I feel like I just swept out my soul, and those crazy stacks of old EOBs will be next.
~~~~~~~~~~~~
Sometimes naps don't work at all. Since I'm breaking so far out of my ruts lately, I decided back to school means I'm getting new stuff in my house, too, so I laid there in the dark scrolling around my phone. I never do that. I so rarely shop at all, this really is breaking out big time for me. I burned out really bad after doing retail for 5 years, so I just never browse unless I really need something, like replacing a crockpot. I decided today I need new sheets. @bonenado bought the last set at least 2-3 years ago and I've never liked them. So now it's my turn to torture him, lol.
And I've been wanting one of these for years. I bet Bunny will think it's awesome.
Also looked up the tracking number yesterday on the sunglasses I ordered last month (I tweeted about them), yes, they're really coming from China. They're super cool if you want to check them out. I'm surprised how little I paid for such nice glasses, plus free shipping, so no idea how they're even making money. Well, I'm assuming they're as quality as they look on the site...
Oh, now I'm yawning. Going to go try this again.
~~~~~~~~~
Nope, just not one of those days. And then the second I get on moc, someone is getting banned for using xray, so it's a day for everybody, I guess.
Got a call to make an appointment for next week, totally forgot I was submitted last May to be a genetic candidate. I'm old enough now with enough family history to get a consult to see if I'm likely to get breast cancer. I go in next week, guess we'll see how that goes. I've been on and off alerts all over my body since my 20s, nothing ever shows up. Really don't know if I'd survive treatment very well, @bonenado already decided a few years ago if I ever test positive he's just going to take me to mayo or something. ~~~~~~~~~~~~
TODAY.
click for fun glitter graphics
Nothing special planned. Maybe I'll go pick up a couple of filet mignons and seasoned veggie grill mix and a tiny cheesecake for supper.
Got a little glum there yesterday, didn't we?
If you haven't figured out by now why I'm already a Doctor Strange fan, then you don't know me at all. It has nothing to do with Benny C because he's made tons of movies I've never seen and I don't go around watching all that just because he's in it. It also has nothing to do with Sherlock. Just for a second, imagine Stephen Hawking watching Doctor Strange. Yeah, that. Lotta people in this world gonna be latching onto this one. Continuing to use our brains to keep surviving when all else fails is what it's all about, kids, and you know I'm sharing the brain glitching part so some of you know we can still do this.
Aspienado in lifelong nerve fail. Wow, just summed my entire adult life up in 5 words.
Trip to town this morning for my annual date with another man on my anniversary. This is follow up with primary, thankfully early because they'll undoubtedly issue heat index warnings again. My head is way better now than Tuesday, so I'm adapting back to beta blocker just fine. He's not going to be happy about my blood pressure going back up a bit, but I think the thrill of me feeling like getting athletic shoes back on for some real exercise will outweigh the compulsion to hit a target number. I think once I get moving around more again I'll feel better about moving forward.
I'm so bubbly full of wordy words this morning that I'm feeling impatient. Too bad I can't just press my head to the screen and think it out to here. #waitingforthebrainchip
First of all, yes, really had a mountain lion ON MY STREET IN FRONT OF MY HOUSE this week. You twitter people ignoring that are just jealous as hell, that's all. @bonenado set up the wildlife cam in the front yard hoping we'll get a repeat sometime this summer. I think all the fireworks going off night after night flushed it out. I live among the slightly better off and extremely patriotic. It's their right and duty as 'Muricans to try to burn these woods down.
@bonenado's brexbist today. Remember that speed vine I retweeted a couple times? That. It works. I need to refresh my muffin tins, though. Using paper cups wasn't ideal.
My internet is slooooow. Wild storms galore, tree down next door, got lots of hail in the pour, now I stay in my door. Ok, let's skip along before I spring into limericks and haikus.
Quickie touch base assessment on howzit going. Cut another 2 inches off my hair this morning. I had cut 3 inches last week or so, couldn't tell because my hair has gotten so long, so I figured another 2 inches would be ok. I can't believe I've taken 5 inches off now and it's still down to my lower shoulder blades. Remember when I got so excited 3 years ago that it was growing back? And then I talked about dealing with all that, and then brought it up again in 2015. Despite the length, I've been losing hair steadily again all spring, but as far as I can tell, it's root regrowth. Hair grows in cycles and people generally don't notice randomly shedding hair and regrowing it year round because it's usually thick enough not to create empty patches. My hair didn't start growing back in until I pretty much doubled my protein intake (sometimes triple, my pre-lifestyle change diet was pretty abysmal), and now I can tell it ebbs and flows when my body is under stress. April was the hardest on my hair this year, and it's starting up again, so allergy seasons and spiking histamine levels definitely affect my hair endurance, which for me means inflammation levels.
I have been tolerating increasing sinus and ear pressure discomfort for a couple of weeks again, decided last night it's time to go back to the twice a day zyrtec, and all it took was that one boost to drain my sinus and clear my skin again just overnight. I come from very white yet red skinned people, and I've lived with an autoimmune flush most of my adult life. When I take prednisone I turn white like magic, and that one zyrtec last night did the same thing. I got whiter through the spring again while I was so miserable with tree pollen but on all that extra zyrtec, and as I tapered down again the last 6 weeks, I flushed up again.
I looked back through my medical history this week, noting dates on certain tests. I used to regularly score 1:16 on ANA titers (positive speckle) (I hit 1:32 years ago and even 1:64 once) and lived with continual moderate SEDs for years (mostly 40-80ish), but we've watched that go away the last couple of years, so I've been negative ANA and normal SEDs for 2 full years now, yay!!! Interestingly, this coincides with getting very stringent with my antihistamines. I started noticing over the last 3-4 years that histamine spikes set off fibro and autoimmune flush flares, but it's getting so obvious now that I'm able to control severity somewhat with diet and antihistamines (and I've had definite input on this from a real allergist, who called it an autoimmune reaction disorder).
I have no idea if this will help other people. I'm NOT saying antihistamines cure lupus, just like changing your diet does NOT cure diabetes. I'm just saying I'm noticing that I seem to have some control over the overall tissue response. I've had other tests scary-spike, like C reactive protein the year I had to be crashed off 2 different hormone therapies, or AST and ALT liver enzymes during steady medication years, and antihistamines don't fix any of that, so don't be dumb, ok? Just saying I'm noticing a correlation between a more rigorous antihistamine regime and autoimmune flush lightening up. You still have to take care of yourself.
Pain, on the other hand, has been off the wall again this month, pretty sure it's mostly weather related. The morphine helped knock it down last weekend but it's a fair bet it made the 'never do again' list after the difficulty I had with it, and then I ground down on daily mobic this week to keep the pain level down a little bit more, but it's just not enough to stop it. I felt great going into the chiropractor a couple mornings ago, but a very sudden wild pop up rained like a lake dumped all over us while I was in there, and I almost limped out of there feeling so rotten all over. I can't take air pressure changes, especially hard and fast, it just destroys me and there's no pain medication or treatment in the world that can stop it from happening. And I noticed last night that I'm seeing phantom light flashes in the dark again, which means I hafta back off on the mobic again before I start seeing auras. Mobic raises blood pressure in the brain and puts pressure on optic nerves, so I normally take it every other day, but this last week has been daily. Doesn't take much of that stuff to do me dirty.
Ok, I'm done with that part. Aren't you glad I don't go on about this every day? I'm just thrilled that I'm not popping into ER every other month nowadays. I've been very lucky that I've never yet been hospitalized, but it's because I obsessively pay attention to patterns over time, like I do with everything in my life.
Enough of that. Back to minecraft! This is an undisclosed location on Kai's realm. I'd never used brick before. It's a special coordinate combo using my fave number, so I planted roots there.
And it happens to be fairly near an uber giant mushroom! That realm is still survival (although I play creative more and more there lately so creepers won't activate), so I'm in process of establishing self proclaimed boundaries and I'm going to light that forest up like crazy and fence it off. Maybe I can make it look elvish or Hobbity or something. Incidentally, I've never run across so many naturally occurring giant mushroom roofed forests as in Kai's realm.
I got 4 hours of sleep last night, so I'm not sure how the rest of the day will pan out. I've actually been up doing random stuff for 7 hours already. I've got cool stuff going in my own new realm, but no pix yet and I'll put them on their own blog later. Getting Bunny pix in from a water park, maybe I'll share them later.
I'm on the verge of taking my mouse apart because that button is sticking so bad now that I lost whole sections of this just hovering over. Little sticky hands, my bad. I'm lucky Jawn's keyboard is still fairly free of problems, although he stopped going full shut down because someone changed a setting somehow. As long as the internet isn't erased, we're cool, but maybe the sticky police need to pay more attention to the tech.
I had to log off and shut Jawn down in the middle of writing this post. When I turned back on, I couldn't pull anything Google related up, not Chrome or Torch, not my G+ page or Youtube, nothing. I'm currently working through the Windows 10 Edge browser, which is fine, but since Microsoft and Google are playing Game of Webs, neither is mutually supportive of the other. I'm finding forums on this problem going back well over a year. At any rate, I couldn't even pull blogger up until I signed into Google through Edge, which technically means I'm signed in on 4 'devices' now- Chrome, Torch, my phone, and Edge. Just signing in again on my own laptop meant security checks galore, a frenzy of email alerts, and having to 2-step verify, so I feel like the time when James Cole accidentally changed the future and wound up having to get back into the lab through Deacon and Cassie-gone-WestVII, like geeeeeez louise, it's me. Same laptop, same house, same little dot on the map, and all guns pointed right at me. As Deacon would say- Respect.
I clearly exhibited today why I'll never to be able to achieve morphine addict status. Hats off to all you guys who think it's the bomb, but all it took was what the ER doctor called a 'baby dose' to set off wave after wave of acute deep musculoskeletal pain and the shakes. Basically, I'm so adapted to screaming high pain levels that it took nearly 20 minutes to even feel relief, and not because it was a 'baby dose', which was probably 5 mg, and I say that because the nurse said it was half a dose when she brought it in. (Morphine Injection)
I so very rarely go in for pain any more. I'm so tired of all the hoops that have to be jumped before I ever get any relief that it's usually just not worth it, but today was one of those days.
Ok, now I had to all-stop because Edge decided that NOW is the time to walk me through an intro like I've never used a browser before. It is now stuck in a loop trying to import my favorites from a broken Chrome. Serves it right.
Ok, where was I? Papa and Bunny are up at the pool, I'm in a nice quiet house with the last of the morphine sliding its way out of my system, and putting the day back together. -Oh, yeah.-
I've been through this before, but apparently my pain management needs adjusting. Just sitting here at the table, streak of lightning bolted through my chest that set off the adrenaline response from heck (not to be mistaken for hell, I've had much worse), that kicked off a sweet SVT that wouldn't slow down at all, so 10 minutes of that and I decided being 16 years past the radio ablation might not mean much any more and better safe than sorry. EMT could feel the pain waves in my pulse changes, no one could get a needle in until I arrived (5 blown veins, and pretty sure my bad after not hydrating well this week after all that deep muscle work in therapy- I know better), and all else being magnificent because I've been working so hard to get all ripped like Madonna, I only had to hang around for 4 hours before I got a small dose of morphine and then cried like a baby.
They used to give me 10 mg and then I'd get all hysterical and bossy when it was wearing off. The best is when I get cocktails, but I'm so loopy after that I'm just not safe even when I love everybody, because you never know when I'll walk right off a curb into oncoming traffic like an idiot. It's just easier on everyone if I tough it out most of the time, and I've gotten so used to stuffing it down that I fall apart when drugs pull the walls down and I have no resistance.
So when I say it was a long, rough week, what I really mean is I'm exploding inside with so much pain that all it takes to break me is 5 mg of morphine. After the first 20 minutes of super ultra hypersensitivity and awareness of every cell in my entire body, I'm finally spazzing on a beach on the other side of the galaxy and it's all cool.
omg, just getting this pic locked up #allthethings again
had to reboot
NOW I HAVE CHROME BACK
I owe it all to this man ZAPHOD BEEBLEBROX 2016
If everyone went through what I go through with injected pain meds, no one would ever use. It absolutely sucks being able to feel every millimeter of my entire skeleton, all the fibers attached to it all over, and all the veins and nerves and muscle fibers around them. SUCKS. Yes, you heard me right. I CAN FEEL MY SKELETON.
I can describe in detail everything attached to my skull, my sternum and ribs, every backbone, all the bony protrusions, and I especially love my shoulder blades, clavicle, and jaw. omg it sucks being able to feel all that so intimately. I don't even feel my skin when I'm in that mode. I don't feel my other senses, nothing else gets through, all I can feel are all those nerves screaming out the map of my body.
You'd think I'd want to be doped up all the time. You have no idea how terrifying it is to live with solid pain and suddenly it turns off. Completely. Like the year I suddenly couldn't feel my lips, tongue, throat, sinus, cheekbones... It wasn't just numb, it was *gone*. The nerves blanked out. I could still move just fine, and talk, but that one got me an MRI making sure I didn't have blood vessel inflammation in my brain during an autoimmune flare up, because yes, I was in autoimmune flare up.
Ok, way too yappy. I need to stop. Today was just about poor pain management and dehydration. I've exhausted lists of pills, I have to plan for 20 more years of liver maintenance, I can't just go back on a bunch of junk and expect to reach anywhere near 65 with grace and aplomb if it's not about making my health top priority. Pills burn you up. I'm living with a liver condition because a decade of meds will do that to you. I'm saving pills and cortisone shots for when I'm older, and I've gotta arrive there in as good a shape as possible if I want to make it longer on medical crutches. My people don't live to ripe old ages like @bonenado's people.
Wait, pain management. I was going to write this down so I'll remember it. When I follow up with my doctor I'm going to ask what he thinks about opiate bursts. Kinda like pred bursts, you don't stay on it, just do short term to get something under control. This week needed heftier pain management, and if I'd had a fall back (boldly says the noncompliant patient), I might not have wound up spiking into the ER right in the middle of a blood pressure med withdrawal. I'm wondering if a low dose ibuprofen/codeine burst for a couple of days might have changed this entire weekend. Maybe I could ask him if he'd let me have enough for, say, one week out of every month. Not a month's supply, not every day, because it's too easy to get addicted again, but a controlled count for one hard week a month. I already knew this week was pretty rough, and I've lived with this long enough to hoard back for days like that.
You know how many doctors over how many years tossed prescriptions out into the hallways hoping I'd chase them out the door? Not this doctor. And now I've got this whole team counting my pills, so I feel like I'm in a safer place now to actually ask for opiates. We'll see what the summer brings. I really don't want to go onto a daily regimen of something that he'll be pulling me back off of in 2 weeks and I'm back at square one. I've been a guinea pig way too many times.
This is what pain management problems look like for what a rheumatologist has labeled 'severe' in a med addict cleaned off meds. I just got my once a year baby morphine shot. Because I'm gonna be MADONNA.
Much of this post was finished up around watermelon, butter and jelly sandwiches, playing 'cherries' (HiHo CherryO), yogurt, playing ball with 3 different balls, and other massive stickiness, because coming home all sparkly clean from a long swim is just too good to be true.
I'm getting so lazy about typos. I used to be appalled if I ran into one later and jump up immediately, no matter what the reason I'd have stopped doing everything else (usually pain) for a break, and nowadays I'm so meh, I'll get to it later. And then much later I go oh yeah, I had a typo, but by then I don't remember where and I'm not in the mood to go find it.
Not in the mood... omg, I'm turning into NORMAL people. I said I was bored earlier this week, and now I'm saying I'm not in the mood.
I'm relying on my obsessive-compulsive everything must be this way or bust behavior to get me through all the things till I'm published. What the what? I'm bored and I'm not in the mood.
Hang on a sec, my body is butting in. *handing mic to left shoulder*
Hi, I'm actually a strip in a bigger muscle group called the trapezius, but I'm the bit that comes from the left side of the neck and anchors to the acromioclavicular joint. I'm probably one of the culprits behind that typical victim giving up style of vernacular (i.e. bored, mood), and I deeply apologize. I know it's not entirely my own fault, as there are plenty of other musculature and bony processes that contribute to this melee of nervous system overload, but I'm definitely a key player this morning. Honestly, I think I could take down Chuck Norris, or at least keep him from killing you. It would feel more like a light tap. Funny story, I
*yanks mic away* Ok, back to stuff. @bonenado just brought me the copy of the official govt form I mailed off yesterday without him seeing it first (I usually make a photocopy and do a practice fill out for him to approve) and showed me where I put month and date instead of month and year, so now I've got to go to the social security office in Springfield and show someone I messed up this paper and see if they'll let me fill out another one there or something.
I'm wondrously intelligent and stupid as a rock sometimes. I can't fill out forms by myself. I can blame it on brain glitching or pain all I want, but blame doesn't get it done right. The stupidest thing I did was think I could do something so 'simple' on my own and totally botched it up. Now I'm a bit peeved with myself, but instead of turning the sourness inward I need to distract again, because my body's already got enough to handle, and kicking myself only makes things worse.
I am Aspienado. I haven't been able to follow directions correctly since kindergarten. I own that this is one of the most outstanding fails in my life. The irony? I was filling out a Disability Update Report. Yes, disability squad, plz to note the cognitive fail. And it's not a blip, it's not an oopsie, it's every. single. time. all. my. life.
Why do they bother even asking about the 3 latest appointments if they don't want the doctor's name and actual date of the appointment? How in the world do they base future need for deeper follow up, oh never mind. The reason they have all these giant bolded instructions is because nearly all of us f*k it up.
lol, Scott and I just had a discussion about how you're watching a rumble about to happen in a show, buncha capes and masks and whatevs, and you notice someone wearing spiked heels and go really? Like they never twist their ankle. Scott said they wait till someone's down and then spike 'em through the eyes. He doesn't question these things. I guess only the cognitively impaired question the logic of superheroes never wearing supportive athletic footwear.
The facepalming is slowly subsiding. My long week is longer, yes, I have to drive further than the plan today, yes, I have to go through security check to sit with a room full of other societal dregs, yes, (I need a t-shirt that states I'm a societal dreg, Dregs would be a cool name for all us underdogs, I think) (we'll rumble in whatever crap shoes we got, yo) (well, my kind of rumble will more like stumbling over a chair trying to get away) ok where was I? I'm a Dreg gonna be all up in that security check, yo. I'm gonna show up and do my thang today, show them again how I screwed up a piece of paper, yo. (Too many yos? I need a dawg somewhere.) I do this what, once a year or so? Totally screw up a form. I need staff.
The super irony is that this post started out about typos and got interrupted by govt paper typos... I started it because there's a typo one or two posts back and I'm too lazy to go find it. LAZY. omg, ok, now I'm cycling back around to what is happening to me, and my shoulder nodding, and me going oh, yeah.
Ug, I'll hafta take everything out of my epi purse at the social security office. I'll pre-empty most of it in the car. It's small, but amazingly super efficiently packed so I won't have to carry a bigger purse.
If I don't stop this right now my morning is going to spiral way outa control. Cue the vid! I shall get me to minecraft straight away until my body reminds me it needs breakfast, yea verily. And then I'll run out my door again.
