So mostly, I have just slept. Hence my eating “lunch” at fucking 6 pm.
Even just sitting here typing feels like a huge effort. My concentration and focus are shot and all I really want to do is go back to sleep.
In fact, I am only awake because I had to pee.
This is often the case with me.
Well at the very .least I have to get food and dugs into me first. Hopefully I will make it to at least 250 words in the process.
But seriously. It feels like every word has to be dragged out of me like all the garbage they dragged out of the river spirit in Spirited Away,
Bet HE got to sleep afterwards.
Not that I’m bitter.
I know what’s wrong. My body is fighting off some kind of bug.
When I woke up this morning, my lungs were all heavy and scratchy and my throat felt raw. Those symptoms have faded into the background now but the tiredness remains.
I might not make it to 1000 words today. I really hope that’s not true and I will certainly do all I can to make my daily goal.
Hopefully, the next time I wake up I will feel better and be able to knock out those other 750 words without too much trouble.
Because this shit sucks, man. Never has 250 lousy words seemed like such a distant goal. I really wish I still drank caffeinated beverages because man do I need a boost.
Well that’s it for me for now. Time to return to my grave
More after the break.
Or not. I was too damned sick to make it back to the computer.
Well, that was quick! Got a call from the Super Spine Team at VGH this afternoon and as a result I now have an appointment to see them at 9 am this Friday, the 22 of July.
This is especially pleasing because Doctor Lee told me that it would probably be a few months before I heard from them.
Well, if you have to err, best to do it in such a way that finding out you were wrong is a GOOD thing, right?
I mean, that’s way better than her telling me I’ll hear from them this Friday and it taking months instead. right?
So I am looking forward to THAT.
Finally! Real fucking progress! And all it took was bypassing Doctor Chao entirely!
Funny how that worked out.
On to the actual topic : how scared I have always been to be entirely in the moment like the mystics and pop psychologists all say we should all do.
Nope. Not going to happen, at least without heaps more spiritual growth. The very idea scares me on a very deep, almost animal level.
But why? It doesn’t seem like an inherently threatening thing. So why the primal fear?
I think I use a form of detachment from the real and the now as a very basic defense mechanism. It’s like my shield against the demanding, immediate, overstimulating world that, if left to its own devices, would never give me time to THINK.
So I live always at least slightly out of phase with the here and now. Always off in my own little world even when it seems like I am paying attention to the current moment.
And I am. But only as much as I absolutely need to be.
The rest of me is still resting comfortably in my hermetically sealed time base somewhere in the void between dimensions.
It’s not that people never get to know the real me. Everything you see is real. I fake nothing ever. I am who you see.
But it’s not the whole picture.
No wonder I am drawn to the idea of extra-dimensional creatures interacting with our dimension via projecting a part of themselves that looks and acts human into our plane.
I identify with that! That’s me!
What an odd and esoteric little critter I am.
So um….. arf? *wagwagwag*
So this whole “mindfulness” kick the spiritual-ish world has been on for decades now just leaves me cold.
I am not saying I disagree. It seems like very wise advice that no doubt works for many.
But um, I ain’t like that. I am my own haphazard creation, messy but magnificent, and due to severe childhood trauma and social damage from bullying and isolation. I am not really compatible with most of the solutions that work for others.
I have a lot of rage, bitterness, and toxic ennui lurking just below the surface of my psyche and I have no idea how to express it in a way I would find acceptable so it just stays there, seething and roiling and keeping me from getting anywhere.
I like the idea of tapping into the energy of those suppressed emotions and using that to move myself out of these goddamned doldrums.
But I am too scared to try.
More after the break.
Learning to fly
But I ain’t got wings.
I miss him so much.
Some artists are so good at connecting with their audience on an emotional level that they feel like friends.
Members of the family, even.
Of course, that song is not to be confused with this one :
(WARNING : Video is very pretentious.)
In their defense, they were going through some serious spiritual growth at the time.
Anyhow, that subject line came to mind because of all of my talk of the baby birdies who don’t learn to fly on the first try.
That, and the problems I am having getting around.
The trip to the car for Denny’s last night was very hard. I made it worse by not sittijng down to look for something and so blowing a big wad of leg mojo on just standing there.
D’oh! Lesson learned, hopefully.
Learning things the hard way sucks but never learning at all sucks far worse.
Anyhow, I am starting to feel like I need to learn how to fly as my poor feeble legs become increasingly vestigial.
Actually, I would rather just learn to levitate. Wings are so bulky.
Here in the real world, that means I need to try out that walker Joe bought. Which means he has to put it together for me. That was the deal.
Like I said before, my opinion of the prospects of it being a viable mobility solution, but Joe was kind and thoughtful enough to buy it for me, so I feel like I must do my absolute best to give it a sincere and focused try.
As opposed to trying it for two seconds, encountering one problem, then totally giving up and declaring it won’t ever work and never trying it again.
That’s basically what I did with the cane he bought me. Sure, my first attempt to use it to stand was a disaster, with my hand wobbling all over due to lack of muscle tone.
But as far as I know , if I had simply stuck with it, I might have gotten the hang of it.
And it’s one thing to give up on yourself but the equation has to change when other people are now part of it and will be disappointed, confused, and/or upset when you try the thing they really want to see you using and you just give up right away like their hopes for you don’t mean a god damned thing to you.
I am speaking primarily to myself. of course.
So this time I will try, try, try. I want them to see me succeed at least as much as they do, and I owe them the best effort I can give to make that happen.
So hooray, I made it to the God Help You If It’s Urgent Care Center today.
But it was close. I almost quit several times.
The first was before even leaving. Woke up feeling my usual kind of crappy and really did not feel like getting dressed and getting going.
But I managed to nudge myself in the right direction enough times to do it.
The second was when I walked from my bedroom to the kitchen to meet up with Julian. Turns out my legs were in a bad mood too. Ouch, ouch, ouch.
The third was when I got there at 9:05 am and they had only been open for five minutes and the waiting room was already full.
Waddy fug? The only logical explanation is that a lot of people lined up before the place opened up and were lined up outside when they opened the doors.
So why the fuck did I get up so goddamned early? Son of a bitch.
You know when it was a lot less busy? NOON.
Which is about when I finally got to see the doctor.
Well, I graduated from the waiting room to an exam room, anyhow. Which was a real upgrade because I could lay down.
Way easier to be patient when you’re lounging in a hospital gown on an exam table instead of sitting in an uncomfy chair surrounded by crying children.
That waiting room was a little rough on my nerves.
Oh right…. the fourth and last time I was tempted to quit was about ten minutes before I was called in. I’d been waiting for three hours and I was getting very tired.
So I was going to ask one of the receptionists if she could tell me how much longer it would be, and if she could not, ask to be taken out of the queue,
Thank goodness I never got around to it.
Finally, I got to see Doctor Michelle Lee, my new hero.
Because she got right down to business, asked all the right questions, did the relevant neuromuscular tests, and referred me to the spine team at VGH.
All in about 15 minutes.
Now why the fuck couldn’t that crock of a doc Doctor Chao do that? On like, the first time I went to see him about this shit months ago?
The difference is she cares.
And probably isn’t paid per patient visit.
Having told her of my sleep incontinence episodes, she also checked my “anal tone”.
Hey, don’t take that anal tone with me, pal!
Which was just a brief finger up the butt.
She also noted that my CT scan report showed that I had a compression fracture of my L4 vertebrae and damage to the surrounding area.
Guess Doc Chao didn’t read that far as it seems rather important.
That’s why she referred me to Spine Team Six. So they could determine whether or not that shit needed surgical intervention.
I am all for that if it might make my legs work again. As scary as spinal surgery sounds.
Never walking again sounds much, much worse.
Oh, and she noticed the ulcers on my legs and told me I need to get off my butt once an hour for at least five minutes.
I can manage that.
Oh, and get this : she told me I can double my dose of gabapentin, which as patient readers know I was thinking of doing anyway!
So all in all, I am very glad I went and saw it through.
Imagine, actual progress on my case, and all it took was bypassing Doc Chao.
I am going to start looking for a new GP.
More after the break.
Thought I’d something more to say
The race is run The song is over Thought I’d something more to say
It almost seems unfair that Pink Floyd could be that good musically AND lyrically. That song expresses British angst so simply and beautifully.
And, of course, depressingly. But so very well.
No one told you when to run You missed the starting gun
pink floyd, “time”
That one cuts particularly deep for us “failure to launch” types. The ones who never really got their lives started. Who were not ready for the big bad world.
The little baby chicks who were booted out of the nest and did not fly fast enough.
Maybe because we were too cut off from our instincts. The little birdies that made it didn’t need to know why they did things. They didn’t need need a reason for anything they did. They just did what felt right, and that worked out great for them.
Because their instincts were correct. Doing what they said was 100 percent the right move at that point. So they survived.
Whereas those of us who did not make it were probably still wondering what the hell was happening when we crashed.
Sometimes nature knows what it’s doing. Sometimes your feelings are correct. Sometimes waiting for a clear, logical, sensible answer can kill you.
Or at the very least fuck up your development and leave you hopelessly broken.
Like when I was a teen. What do teens normally do? Go find a peer group. Try different social strategies to see what fits for them. Explore their sexuality. Have fun in way more like an adult style of play. Be moody, difficult, and sullen.
Why are they like this? Because their instincts are driving them to do the things they need to do in order to develop into adults.
Me, I was too “smart” for that, and thought doing all those things was “pointless”, and so I stayed home and kept entertaining myself and didn’t grow one tiny bit.
No wonder I feel like I am, at best, thirteen on a psychosocial scale.
Some days it feels more like I am three. I see and know and understand so much and yet none of that helps me grow as a person at all.
All I really get out of it is smug satisfaction that I understand things better than most people and see what they cannot and see more of the chess board and all that other cold intellectual comfort bullshit.
Well they might be ignorant compared to me, but they are healthy and happy and functional, and I am a living wreck dashed to pieces by the waves before I even lost sight of shore.
Just made the kitchen trip to get my very late (5 pm) lunch together and whoa nelly was that a rough one.
It’s getting to the point where I am actually thinking of taking 2 gabapentin next time I dose up instead of one.
I’ve resisted this notion up until now out of fear that it would numb my pain too much and I would ironically find myself unable to walk because of THAT.
Oh, and I suppose that technically you are not supposed to just change your dosage on your meds without the doctor’s permission.
But we all know I am way too intellectually smug for that to stop me.
Still, I am looking down the barrel of a gun here. If I lose my ability to make it to the kitchen three or four times a day, I am going to need actual professional care.
Or at least I am going to need to use that damned walker Joe bought me.
I took a good look at the box when I was out watching stuff with my friends last night, and I am even less hopeful about its prospects re : filling my needs than before.
For one thing, its “feet” are just the exact same sort of “feet” you see on cheap aluminum furniture, which is basically what it is.
I hope that is enough of a description because I can’t come up with a better one.
This gives it precious little surface area in contact with the ground and that means it will apply a great deal of pressure on each of its four little feeties, possibly damaging whatever surface it happens to be on.
Carpet would probably be OK, but I will have to keep it off the linoleum.
And I am still not sanguine about how able to adapt to it I can be. I know I can be very difficult and fussy in situations like this and so I will have to make sure to take things show, go into it knowing it will be frustrating and hard at first, and keep my tendency to fly off the handle and give up on things in a rage when things get tough in check.
Even with that, I am not sure I will make it.
But I will give it a damned good try because I really, really don’t want to have to ask someone else to make my meals and fetch my snacks.
At least I can still make it to the bathroom and back.
Knock on an Amazon rainforest of wood.
But yeah. Two places I need to go : Regency Pharmacy for crutches or whatever, and the god damned Urgent Or Whatever Care Center.
Tomorrow is Sunday. Monday, Doctor Chao comes back from vacation. So basically, I have to go tomorrow in order to have technically complied with his directive to go there while he was away.
Sad, I know.
So I am working up the wherewithal to ask Julian to drop me off at the Richmond Urgent and Primary Care Center at 9 am tomorrow morning.
That’s when they open and therefore my best chance of not having to wait a really long time to see a doctor.
Wish me luck.
More after the break.
It’s getting late
It’s 11:It’s 11:08 pm and I have about 450 words to go, so I had best hustle.
Today has been okay, burtal leg pain aside. Quiet.
Luckily, I have found out how to get extra performance out of my (nonsexual) vibrating massager and can now fairly reliably use it to melt a ton of tension in my back away.
This, in turn, bas greatly improved my sleep, and improved sleep has modestly ikproved my mood, so I am feeling okay-ish.
I’m not turning cartwheels or nothing, but things don’t seem so bad.
Turns out the secret was to press the unit firmly but gently against my spine right in that oh so sensitive and pain prone lumbar area.
Seems obvious when I put it like that, but whatever.
Feels marvelous when all that tension just melts away like snow under a blowtorch.
That turned out more violent than I intended.
Current better mood aside, I’ve been pretty depressed, on and off, for the last few days.
I’ve “coped” with it in the usual way, namely by burying myself in my current video game. Right now, that’s the original Pillars of Eternity.
Played the bejesus out of the sequel, Pillars of Eternity 2 : Deadfire, recently, and throughout the game there are loads of references to the events of the first game and that got me nostalgic for the first one so here we are.
I should mention that I have thoroughly played and beaten both games before but it was so long ago and they are so densely packed with contentthat they are practically new games to me now.
With the additional benefit that I already know I love them both.
Turns out there are benefits to the bain fog of getting older. Go fig.
They are both fantasy RPGs of the sort where you control a band of heroes as they fight the forces of evil and so forth.
The first one is RTWP (Realtime With Pause), which means it is not, technically, turn-based. You fight battles in realtime, which sounds insane when you consider that I have six heroes to manage, but they mostly run on AI scripts so I don’t have to tell them to do every little thing and at any time I can pause the game, issue orders, then resume.
I thought I would hate that, but it’s actually really efficient. It eliminates the need to issue the same commands over and over again for the most basic of things and lets you concentrate on just the times when you need to intervene.
Turns out controlling six heroes at the same time in realtime isn’t so bad when a) they are not idiots and b) you have the power to freeze time.
Well, that’s my words for today. And with more than 20 minutes to spare. Yay me.
Today was Wound Care and it was hell getting there and back for me. I was in so much pain during the walks to and from the car and up to the Community Care Clinic (CCC) were agonizing. By the time I got where I was going, I was sweating like a winning racehorse and panting just as hard too.
Frankly, I don’t know if I can do that again. That might be my last trip to Wound Care for a while. At least until my legs get better.
Assuming I ever get that rare and exotic thing known as a diagnosis.
It’s been three months now that my legs have been dying out from under me and I am still no closer to knowing what the hell is wrong with them.
If trends continue, I will be functionally unable to walk before too long.
And I will blame that entirely on Doctor Chao.
If he had shown one scintillionth of the necessary sense of urgency in my case, I would have a diagnosis and maybe even (gasp!) a treatment by now.
But nope. Three months in and I’m in the dark. my legs are in pain, and Doc Chao is off on vacation without so much as leaving a locus to handle his patients while he is gone.
Oh well, at least he isn’t someone with massive responsibilities and the literal power of life and death over hundreds of people or anything. O wait….
Not that I’m bitter.
I’m just seriously fucking pissed off.
I am going to try to make it to Somewhat Urgent Care tomorrow. Preferably as early as I can stomach. And maybe they will care enough to actually diagnose me.
Or at least spend more than five minutes with me. And at least pretend to care.
Actually, that’s unfair. Doctor Chao definitely pretends to care. I tell him my problems and he’s all “Oh my, that’s terrible!”.
Doesn’t keep him from shoving me back out the door as soon as possible, but ya know, at least he cares enough to lie.
So um, thanks.
I will go to the Theoretically Urgent Care Center knowing I might be in for a long wait. So I will at least bring a book.
Makes me wish I had my tablet already, though. Tablet plus WiFi equals a healthy percentage of the comforts of home, at least.
It wouldn’t be so bad if I could wait in a hospital bed, like in the ER.
No wait is unpleasant if I can nap through it.
Then again, if I really do get to the point where I can barely walk at all, I will then feel entirely entitled to go to the fucking ER.
Screw this slow bullshit. Sure, I have waited very long times at the ER, but at least something eventually fucking happened.
Although if this time I go there and tell them my tale of woe and they do a bunch of tests and then have the nerve to come tell me they don’t see a problem, they will be able to hear me yelling, “THEN KEEP LOOKING, ASSHOLES!” on the ISS.
More after the break.
An unpleasant theory
I have had an unfortunately quite plausible terrible thought.
OK, hear me out.
Remember way, way back when I thought I might have lactic acidosis because I had been to the ER and that creepy fucking ER doctor, just before he ejected me from the ER, said something like, “Well, the only thing we found was extremely high lactic acid levels, but….. you don’t care about that, right?”
And I was far less bitter and cynical back then, so I just went along with it?
But then later I got to thinking that sounded pretty bad and looked up lactic acidosis and got freaked out because it can actually be pretty bad and what the hell was the doctor doing sending me home with levels that high?
So I went to Doctor Chao, whom I still trusted, and asked him to test my lactic acid levels to see if they were still high?
And then I went back to him a week later and he said they were fine?
Well he didn’t say it in a very reassuring way. In fact, looking back, it was clear he had completely forgotten our previous conversation and so he only stammered out something like, “Oh right…. we checked that…. it was fine. Perfectly normal. Good. ”
I told you all that so I can tell you this : what if I have been suffering from lactic acidosis all these years and not known it? What if that is the actual cause of the lesions on my skin and the deterioration of my poor legs?
Because as I took my first Aleve dose in three days today, it occurred to me that without the Aleve, the muscles in my legs and in other places start to burn.
And that sounds a lot more like an excess of acid than diabetes to me.
Think about it. I may have suffered years and years of debilitating symptoms which may yet cost me my ability to walk or even my life all because my fucking doctor forgot he had ordered a lactic acid test and why, so he just made up some bullshit that would cover his ass in the moment, and to hell with what happened to me.
I want an lactic acid test on my blood and tissues ASAP. Maybe there truly is no problem and I am just being paranoid and lashing out.
But maybe I am the victim of profound medical malpractice on the parts of both the ER doctor and my GP, Doctor Chao.
A lactic acid test will establish the truth.
But who do I get to order one for me?
Maybe someone at Kinda Urgent Care can help me.
Though I had better come up with a reason to ask that doesn’t implicate two other doctors or they may close ranks and refuse to cooperate with me at all.
So at around 3:30 pm I got up to get some lunch together.
But my legs hurt pretty bad ike right away, and that made me remember that it has been a long time since I took my newly beloved yabba-dabba-gabapentin, so I figured I was overdue for pain relief, took one plus some Acetaminophen (Jesus is that a hard word to spell) and waited half an hour or so for the pills to kick in.
So a bit before 4 pm, I get up to try again, and the pills, they do nothing!
But don’t we all have our own stories of when the goggles did nothing?
My legs still hurt like hell. In fact, disturbingly. my legs already hurt like they normally do at the end of one of my kitchen runs.
This was decidedly unwelcome.
Luckily, once I am actually in the kitchen, there are plenty of surfaces close at hand for me to lean on.. Which was especially good, because I have started getting really dizzy when I stand up again.
Dunno what made it go away for a while, but it’s back, baby.
So I had to lean hard on the counter for a while before it would even be safe for me to move when my local subjective gravity field is in such violent flux.
Makes it feel like I am in something that is spinning really hard and fast. No fun.
Then I pulled together my meal, and before I was even halfway done, I knew I was not going to make it back to the computer in one go this time.
So I had to flop my butt down on my couch in the living room and wait a while for my legs to recover.
This happens like 1/4 of the times I go fetch meals. It’s worrying because it seems like a step in the wrong direction and i am dreading the day I just plain can’t make the trip no matter what any more.
That will signal a phase change into being truly crippled. And at that point I will need some kind of professional help.
Besides my therapist, that is.
I am starting to wonder if I would be better off in some kind of managed care home.
Assuming such a thing is even an option for poor folk like me.
If I was in one, there would be people around to help when I needed assistance and they would be professionals so I would not feel guilty for leaning on them so much.
Still can’t shake that fear and guilt about being a burden to others, no matter how much they tell me they don’t mind and it’s no big deal.
Because the deepest levels of my sickness still insist that I am worth absolutely no amount of time, effort, or money to anyone and therefore anything anyone does for me is a huge sacrifice for which I should feel massively guilty because by definition any time, effort or money invested in me is a huge waste.
That is brutally sad but I am stuck with it for now. I have almost never had anyone treat me like I am worth anything, despite all my gifts, and I got the message from that experience that I am not, in fact, worth anything.
Nobody ever treated my gifts like they were something valuable. They treated them as something annoying that made me hard to deal with.
Maybe that’s how people dealt with me as a potential threat to their own self-esteem. Dealing with a mega-bright kid must be really rough for adults that have the assumption that they will always have an intellectual advantage over kids.
Some of whom go into teaching.
And I mean, it’s a valid assumption that works most of the time.
Just not with extreme outliers like lil ol me.
All it would have taken is just one adult who believed in me and told me I was lucky to be so gifted and that said gifts were worth a lot in the real world, and give me some genuine encouragement, and things would have been radically different.
But nope. The only way they could deal with the fact that I was massively, staggeringly smarter than them was to treat it like a nuisance.
If I actually realized what I was worth, I would become utterly intolerable.
Better to permanently crush my self esteem.
Yeah. That makes sense. That tracks.
More after the break.
The latest update
Just got supper. Legs are still not doing too good.
God, I hope this isn’t the new normal. Please let this just be a bad day or otherwise an aberration and let me return to previously established levels of agony and suffering when I stand or walk Real Soon Now.
If this DOES turn out to be the new normal. then it is definitely the last step before being totally crippled. Because I am just barely making the kitchen trip right now.
I might have to pull the trigger on my plan to move some or all of my food into the bedroom here so I can get at it more easily.
Not sure where the hell I would put said food. Possibly in bags under the desk so they are easy to reach?
For this plan to fully succeed, I would need a mini-fridge and a microwave.
I have the mini-fridge, it’s just not working right now. Door won’t stay closed. Should be possible to fix with some ingenuity and duct tape.
Mostly duct tape.
I doubt we have a spare micro-wave lying around, although you never know with Joe, so I will be sure to ask before I make any purchases.
It can be a small-ish one as it will mostly be used to pop popcorn and heat stuff up. Maybe make the occasional microwavable entree or whatever.
Point is, I’m not going to be cooking Christmas dinner in the dang thing.
Not sure where I would PUT a microwave ’round here./ I suppose that if I cleaned off my desk and rearranged things just right, I could fit a small microwave on my desk.
Assuming it being there wouldn’t fuck up my computer. Hmmm.
Otherwise, I don’t see a way to have it in reach when I am at the computer.
Oh, and get this : Joe bought me a walker.
And I am going to give it a try, at least for getting around the apartment.
Being seen in public with it is a much dodgier prospect.
Personally, I have my doubt about it being able to stretch to a sufficient height for me to use it without hunching over like Quasimodo.
And that’s not acceptable.
Then there’s the issue of clearance. This is a small heavily packed apartment and me plus a walker will need a lot of room to move around.
Still, if it saves me pain during kitchen trips, it might be worth it.
I just need to stop thinking of it as a walker, and start thinking of it as a “portable thing I can lean on”.
It’s an Amazon Fire 10, a ten inch tablet to accommodate my giant gorilla hands.
I was going to do the obvious thing and buy it on Amazon Canada, but there were only two shops selling it, and one was only selling it used and fuck that noise.
If I am spending this much moolah, I am not spending it on something that has already absorbed other people’s finger sweat. No siree Bob.
And the other was happy to send me a new one…. by August 8 or 9.
Apparently they were gonna swim it over to me from China.
So first I went to Best Buy Canada. Ironic name – they had the highest prices of any of the places I checked.
Well, technically, it “best” buy, not “cheapest” buy. And in their unbiased opinion, the buy where you pay them way too much for things is the best buy of all.
So anyhow, I ordered the damned thing. All told, after shipping and import fees and other mysterious factors, my tablet cost me $180 in Canadian bucks.
I am getting really fucking sick of things suddenly becoming way more expensive when it comes time to pay. It’s bad enough with my Skip the Dishes orders, but to have it on a big ticket item like this makes me feel distinctly clipped.
I have never been fond of sticker shock.
Checkout counter shock is much worse.
But whatever. The thing is ordered, the money is spent, and within three business days I should have my new toy.
And if it doesn’t work, I’ll call Jeff Bezos to complain.
Today was Therapy Wednesday.
Totally blanked on the fact that we’d moved it at the end of my last session. So when the phone rang at around 1 pm and it was Doctor Costin asking me if I was ready to do therapy, I was completely caught off guard,.
But I am very proud of the fact that I still jus said “Sure!” and went on to do therapy with the Doc like I had totally remembered it was today.
For me, that’s turning on a dime. I handled something unexpected with grace and aplomb and that makes me so damned happy I could split in two.
So yay me! I am becoming more ruggedly capable.
I talked about how I feel like I don’t have whatever motive force it takes to get over myself and get my life moving and take better care of myself and all that jazz.
And it’s true. Whatever you want to call that metaphorical substance – let’s call it anima for the moment – I do not have it on hand. My soul is quite barren and nothing grows there. All that damage and the killing frost that sprung up to handle it have combined to make my inner world nothing but unbroken midnight tundra.
I contain much beauty, wonder, and delight. But none of it is for me.
But the fact that I don’t have this anima does not mean I cannot generate it.
I am packed to the rafters with high powered emotions just waiting to be used as the potent but unstable power supply for a revolutionary war engine.
All it takes is the courage to stop hiding from my primal emotions and instead give them a big sloppy kiss then slap a harness on them and make them WORK.
I’m working on it.
More after the break.
Genius. I love it.
A theory of glitches
I have consumed WAAAY too many of these Glitch in the Matrix stories.
That’s what Reddit (and hence, the internet) calls people’s personal stories of the bizarre, extreme, radically out of context experiences they have had.
Alien abduction stories would technically count, but these stories are far more likely to be “reality flaw” stories.
Like living the same day twice. Or missing time – sometimes in large amounts. Or getting caught in a loop with no way out on a familiar road. Or time suddenly jumping forward and you with no memory of what happened to you in the skipped time. Or a total stranger approaches you and starts to reminisce with you like you are old friends and they even have pictures of you and them when you were young on their phones but you do not remember a single thing about them.
I’m becoming a believer in alternate timelines.
My theory of why this happens stems from a book I have called Hallucinations, by my hero of brain nerdity, Oliver Sacks.
In it, he lists a lot of types of hallucinations that various people have experienced and that he has recorded in his years as a doctor.
And I am repeatedly struck by how many of these Glitch stories match some of the hallucinatory events in Sacks’ book.
So my current theory is that it is entirely possible for otherwise perfectly sane people to have a one-time hallucination due to some sort of potential in their brains building up without release to the point where it discharge into the brain and voila, hallucination.
And to make things even scarier, one theory of UFO abduction stories says that it is possible for people to hallucinate memories into existence.
The idea is that in order to resolve some deep psychological conflict, their minds had to create a new, false memory out of whole cloth and it did such a good job of it that the new memory is indistinguishable from the person’s genuine recollections.
So when the abductee or other victim of these extreme out of context events swears that it happened. they are not lying. As far as they can tell, it did.
It’s a terrifying thought that memory could be fooled like that.
This relates, I think, to the Mandela Effect. I think sometimes, in order to fill in gaps in your memory, your mind creates a memory of what it thinks should have happened.
So I never saw a cover that said “The Berenstein Bears”. And I never saw a flesh colored Crayola crayon.
You see, another reason why I am not trying that hard to cut back on my water intake like Doc Chao wants me to is that drinking lots of water is how I deal with summer heat.
And it works. It actually works. As long as I drink lots of water during the heat of the day, I handle the heat just fine.
This is in stark contrast to what used to happen, which is that I spent all afternoon and into the evening experiencing heat stroke or even heat sickness as my body and brain overheated and made me feel very, very bad.
So I am going to keep drinking lots of water all through summer and to hell with my low sodium levels. I will manage.
Besides, it’s more fun to treat that the other way.
MORE SALTY FOODS! Mua ha ha!
Had what turned out to be a silly scare.
So I went out to the living room to watch Colbert and the Daily Show off the PVR at midnight with Joe and Julian, as is our ritual on nights when we are home.
And as usual, I forgot my glasses. D’oh. I am always concentrating so much on just managing to get to my spot in the living room despite the pain that the thought that I won’t be able to see the screen too good without my glasses slips my mind.
So once again, I asked J&J to get them for me. Embarrassing, especially because it happens almost every time, but I swear I am going to learn to remember them like…. any minute now. I promise.
Anyhow, they had a much harder time finding them than usual. Then they finally found them and brought them to me and I put them on… and everyone went REALLY BLURRY. Like I was looking through the world’s worst windshield.
Oh fuck. What now?
Were they the wrong glasses? They sure looked like my current pair. Heavy black frames and all. So either my glasses had changed…. or my eyes had.
So showing the calm and sensible manner for which I am known, I panicked and concluded that my eyes were dying.
So I made plans for Julian to drop me off at the ER this morning. But when the moment came to leave, I was too damned sleepy to go.
And that turned out to be a good thing.
Because imagine my surprise when I am sitting at my computer with my glasses on the desk to my left when I glance bed-wards and see my glasses sitting on my clock-radio!
What the FUCK?
So I pick up the pair off the clock radio and put them on, and voila, everything is clear again. Turns out they HAD brought me the wrong pair.
But very much in their defense, the two pairs look a LOT a like, and I had no idea I had more than one pair with the heavy black frames.
Oh well. No real harm done. Just another wacky misadventure in Fruvous land.
Now I have to go back to getting my ass to Urgent (ish) Care.
More after the break.
Another day in the life
The life of fat guy pushing fifty with a brain the size of a planet and so many health issues he’s probably not gonna see another birthday, that is,
So ya know. Business as usual.
Been shopping Amazon for a tablet. Not having a lot of luck. The whole thing makes me feel so old and lost.
I mean, products don’t even have titles any more, just a surprise ejaculation of facts about the product in order to match as many search terms as possible.
So I am stuck looking at this ketchup bottle squirt of information thinking, “But what IS it? What is its name? Who makes the goddamned thing?”.
Like, I don’t even know where to start.
And there are so damned many of them. I kinda hate myself for thinking this, but I kind of miss the days when massive megacorps ruled everything and so there would be maybe three brands of something and each brand would have maybe three models so you were choosing from a list of 9, not infinity plus ten.
So I get the feeling I am going to need to consult my fluffy friends again on this. I can’t fight this hurricane of bullshit on my own. I need the wise counsel of people who actually know what the fuck they are talking about.
I love people like that.
Especially when they are willing to share that knowledge with a stumblin’ fool like me.
This is exactly the sort of situation where a high level of generalized intelligence is not good enough for the job.
Luckily, I am chatting with my buddy Niva about it.
It occurs to me that knowing how to get people to share their knowledge with you by being a good and eager listener must have been one of the first things I ever learned.
I have memories of eating up whatever my siblings were willing to tell me when I was barely out of diapers.
And of course, that went triple for when I was with my mom. She is a teacher and I was her perfect little student. A happy little information sponge who soaked up and retained whatever she wanted to teach me and who loved nothing more than to get praise from his mom about how smart he was.
Kinda explains a lot, don’t it?
And because I have a highly nerdy family, there was usually someone around who was happy to answer my questions because nerds love to share knowledge. especially from a position of authority.
So while my family might have been very cold to me in many ways, they were at least very informative to me.
Kinda explains a whole lot more, don’t it?
No wonder I have a big brain and a tiny soul. Only one got nourished.
I am currently part way through the following video :
Pretty good stuff so far. Thoughtful, sensible, and scientific. Bravo!
And one of the presenters, appropriately enough a gastroenterologist, talks about the link between gut health and serotonin levels.
He claims that 95 percent of our serotonin is both manufactured and stored in our gut.
If so, trying to treat depression on the brain level is like trying to cure a hangnail with medicine for the spleen.
I have been reading stuff along these lines for years now, and it makes me very curious to see if a modern probiotic formula would do me any good.
Maybe for all these years, my real problem has not been my traumatic and isolated childhood but a distinct lack of the proper “gut feelings”, so to speak.
In a way that feels like it would trivialize my pain and suffering, but if that’s what it takes to get rid of it, hey, trivialize away.
Besides, that’s just the depression talking anyway. It will say and do anything and everything to keep me in its icy grip, including talking with what seems and feels like my own voice, but I ain’t falling for it any more.
I am not my depression. And it is not me. So it can shut the fuck up.
I murder my depression.
Anyhow, thinking about my gut health made me realize that I have a pretty healthy diet now. Low in carbs, lots of plant protein and fiber and the vitamins and minerals I get from the fruit I eat with every meal.
I still don’t get nearly enough calcium, which is why it did not surprise me at all to learn that I have osteoporosis.
Although I suppose I really ought to follow up on that and learn more. Because that can be a really serious disease if left untreated.
And eating more almonds will only get me so far.
There are probably more sophisticated treatments than just adding calcium to my diet at THIS stage of the game.
After all, medical science has been tackling this in women for at least 25 years.
And it can’t been that different for men. Bones do not have a gender.
Well, not on the structural level anyhow.
Eh. I’m such a mess, medically speaking. It’s hard to even know what to focus on. I have been focusing on whatever the fuck is happening to my legs because that’s what is the most painful, debilitating, and scary issue I got going on right now.
But I should really be concentrating on controlling my diabetes. And using my CPAP machine on my sleep apnea. And the hernia in my gut. And my vitamin B12 deficiency because I don’t eat enough meat. And my osteoporosis because I don’ eat enough dairy. And my foot numbness. And the loss of feeling in my fingertips. And the fatty infiltration of the liver that was diagnosed a LONG time ago. And so on, and so on.
Sorry for the harsh tube buzz. This is the best version I found.
It’s all far more than I can handle. What I really need is some sort of medical case worker who keeps track of all my ailments and who can talk to doctors about them and arrange appointments and such.
But nope. No such thing exists. Apparently, nobody cares if you are sicker than you know how to handle on an administrative level.
Guess I’ll just die, then.
More after the break.
Another spadeful of dirt on my grave
I think my legs might be getting worse.
Specifically, it’s the muscle spasms in my upper right leg (aka “the Cramp[1]“) that seem to be intensifying. Right now, the second I stand up, the damned muscle starts to twitch and throb like I am about to have one of my little falls.
Luckily, he says with some irony. I seem to have gained a knack for catching myself when that happens, so instead of falling onto my butt, I just suddenly dip down like I am trying to win a surprise limbo contest.
Most of the time, at least.
Maybe that’s the problem. My muscles have a strange need to dump me on my butt and render me helpless on the floor for a while, and I keep thwarting them in that, so they are going to keep trying till they catch me off guard.
Well tough titty, muscles. This is the new normal. Get used to it.
Missed Wound Care again. That’s twice in a row. Sigh.
I woke up around 10 am and had a sudden feeling that I had Wound Care today but I didn’t know when.
So I called up the Community Care Center and they told me I did have an appointment today and it was for noon.
Oh OK, thanks! I said, and hung up the phone.
But then I realized there was no way I could make that because noon is when Joe starts work these days. So then I had to call them back and tell them I couldn’t make it.
Which took a dip into my emergency supply of chutzpah. In other words, it was a medium strong challenge to my social anxiety.
It helped that I didn’t really have a choice. It would have been worse, social anxiety wise, to just ghost the appointment.
So I had to make the call, hard as it was to do.
It was fine, there was no problem, she just made the new appointment without a fuss.
Which is good, because if she had expressed the slightest bit of anger or disappointment or disapproval, I would have broke down completely.
Or possibly exploded with rage. You never know with me.
Either way, it would not have been pretty.
Though it might have been cathartic…. hmmmm. Oh well. Like I will now always say :
The stakes are always high when you have an anxiety disorder.
And I will talk tio you nice people again tomorrow.
Footnotes (↵ returns to text)
You know, like in that famous Xmas book for children, “The Night The Cramp Stole Krampus”, by Doctor Goose.↵
I tried going to Urgent Care today like I was supposed to do (yesteday).
Really I did.
The plan was that J&J would drop me off there and then go to Costco while I got myself looked at by actual doctors.
The dropping off part worked. The new building is very nice. Has that super clean feel to it that buildings that have not yet soaked up years and years of human odors have.
I walked up to an intake desk and started to explain my case, but the nurse interrupted me to tell me I I had accidentally cut in line before this Asian lady.
Oops! She presumably got out of my way (as one does when an ox is on the move) so adroitly that I didn’t even realize she was there.
So, slightly abashedly, I sat down to wait my turn.
When I got to the desk, the first thing the intake nurse told me was there would be a wait time of at least three to four hours.
My jaw dropped. Says what now?
I guess at that time, it was a Not All That Urgent Care Center.
I instantly decided that there was no way my body was ready to sit in a waiting room for three hours minimum. So I had to ask to use the phone to contact J&J.
We did the whole “tell me the number and I will dial it” thing.
I then had to tell Joe they needed to come pick me up again already. And they were almost at Costco at the time.
Sorry guys. Shit happened.
So now I am back home, as sick as ever. Dammit.
At least there has been no more incidents of sleep incontinence. So it’s possible it was a transient problem triggered by factors as yet unknown.
Still a horrifying thing to have happen, and I would really like it to never ever happen again, please. Which means I would like to know why it happened in the first place..
But at least it’s so far, so good. Knock on wood.
Take one tablet….
Closing in on buying meself a tablet.
Got some recommendations from some fuzzy friends. Cool beans. Apparently you can’t go too far wrong with Samsung products and they have stuff in my price range.
One problem is that I don’t really know what my needs are. All I want is to be able to browse the Web and do SMS texting.
My buddy Niva pointed out that if I went with my plan of using a third part text messaging app to do my texting, I would only be able to send and receive texts when I had a WiFi connection.
So I am back to looking for one with an SMS chip. Probably.
I could put up with the Wifi limitation but I would rather avoid it as I want to be able to contact people in an emergency, wherever.
Given my poor health, emergencies could happen at any second.
Hell, I might have to use the thing to contact 911 and/or the roomies from this very bedroom if I take a bad fall.
Oh right. Because I didn’t do the UCC (Urgent Care Center) thing today, I am going to call Doc Chao’s office and try to make an in-person appointment with him.
The whole reason he wanted me to go to the UCC was so that someone (not him, of course) would see me sooner than he could.
Well that ship has sailed. I might try the UCC again when they open tomorrow at 8 am if I can summon up the ambition, but otherwise, the ball is back in Doc Chao’s court.
Let’s see if he manages to do something with it this time. Fucker.
More after the break.
Oh I could not love this more :
Do I even need to say why?
Another hurtful landing
Jesus, just the trip from the living room to this computer of mine hurt like hell.
There is basically no distance too short for my suffering. If my leg joints take my weight for any length of time measurable by human science, I am in pain.
Still pissed off about the lack of progress on my case. I am going through hell here and worried sick about losing my legs – or worse – and I have been in this state for two and a half months and absolutely no progress has been made toward a diagnosis.
Let alone a goddamned treatment.
And Doc Chao doesn’t care. In his mind, when a patient leaves his office, they stop existing. As far as he is concerned, he listened to your concerns and then sent you off to do something and that is the length, width, and breadth of his duties.
Maybe he’ll look at your file before you come in. But probably not. Instead, he will only look at the tiny bit of it that is immediately relevant to your complaint and he will do that while you are sitting right there in front of him and not one femtosecond earlier.
Because otherwise, he would have to think too hard! And remember stuff! He’d have to have a sense of who you are and what your medical history is and stuff!
Clearly that’s not on.
Once more, I think longingly of the ER. They’re not perfect but at least they get shit done. If I had just gone to the ER right away, I would have been examined half a dozen ways by now and they might even have some idea what the fucking problem is.
They, unlike Chao, have a sense of urgency.
I get the feeling the only thing Doc Chao does quickly is get you in and out of his office.
I would ask him to refer me to a specialist but it can take aaaaaaages to get an appointment with one.
I should probably see a neurologist. Or maybe a neuromuscular specialist.
I dunno. Some who is actively interested in my welfare and really wants me to get back on my feet again.
