I could blame all of 2017 on Jeff, actually

"I cannot heal heart, soul, mind, and body while I'm focusing on orchestrating a cheering section for execution festivals." -me

I think that is worth restating once in awhile. No reason.

I've received notice from Google that my "Dare" Lexx Sex Survey can no longer be supported on tumblr. There were 3 specific notations, but each of them clicked to details that were extremely vague and nonspecific. I can't tell if my content material has been hacked and redirects outside of my own web empire, but I'm not at all surprised photobucket might be at the heart of it. This wouldn't be the first time that linking from photobucket caused problems. I can't tell if the post was reported or not, and I wasn't asked to remove the content, but the ultimatum is that particular post will no longer be eligible for AMP (Accelerated Mobile Pages)-related features in Google Search. I got ticced 'critical' for invalid stylesheet, invalid layout property found in AMP tag, and prohibited or invalid use of HTML tag. Since I pasted that html directly over from blogger, which is a Google supported format, I'm not understanding what they're pointing out, but from the laborious difficulties I've had with tumblr since I made one, I can only assume that tumblr is the real problem here. And if it was someone reporting content, then I'm really surprised it took so long.

So Bunny is 4 now and there is joy throughout the land. We work on 'homework' sometimes, and she's getting pretty good at doing those cute workbooks you can pick up for pre-K. I've started letting her press the arrow keys to make me move directions in Mo Creatures while I do the steering, but she bumps the 1 a lot when she gets excited and we nearly chopped her bunny in half with my enchanted sword (because it's in first position, if she had pressed 2 it would have been my silver sword for werewolves, 3 my pickaxe, 4 my tree axe, 5 my shovel, 6 my bow and arrows, 7 a block of cobble, 8 a mutton steak, and 9 a torch, but 1 is right by the forward arrow button, egads). I told her be careful so we don't kill the pets, and instantly she was like KILL ALL THE PETS, and I'm all NOOOOOOoooooo... I may have to get her onto singleplayer on a tablet we have around the house. Anyone else know a 4 year old playing minecraft?

I really screwed up my CPAP last night ripping it off in my sleep, so I'm intermittently trying to make up time wearing the mask while I play this morning to make up the 4 hour minimum requirement for insurance. I've got 30 more minutes to go. Night before last, no problem, 6 1/2 hours, so whatever happened last night, no idea. I'm going with 'abducted by Jeff' (People of Earth).

Tomorrow is @bonenado's birthday. I made a birthday pie. I think that's the first time I've ever made an apple pie with confetti sprinkles. Bunny is really big on sprinkles.

I'm in dual mode lately, super bumbly and disconnected on the outside, super focused and humming along quietly on the inside. Still having problems with my feet, and the only way I can handle walking at all is in athletic shoes. The second they're off it's like I have different feet. I discovered yesterday that this complaint goes clear back to March, so that's pre-baclofen and I can't keep blaming the med for me noticing it more, another plus for somewhat daily blogging or journaling, guys. All I know for real is that after Christmas I started asking for med help and it's backfired twice, but underneath it all the nerve problems continue no matter what I do or try. So I'm kinda relaxing and going with ok, we're either in a setback year or defaulting into a new progression, but the important thing is that I'm still functioning on my own and still mostly keeping up with the basics around the house. I even cleaned floors this last weekend and recovered more quickly than expected, so something is still going right. I'm eating salads several times a week, getting more raw veg in my diet kind of thing (I love cauliflower and radishes) and I super avoided all the bad birthday carbs, so I haven't done any crashing through all this stuff. We're all noticing that using my laptop in bed is helping my stress levels a LOT. It keeps my legs up, keeps me resting, and keeps me out of the way while other people do the fretting, lol. I'm able to hopefully keep being a nicer person like this. I'd almost feel weird about all this 'bed rest' except that I've stopped taking naps now with the CPAP, so if I'm not laying down during the days like I used to, what's the difference if I'm sitting in bed working or at least accomplishing tasks on a game server, right?

That is the hayfield across the street from my house. Those weeds along the street are as tall as my head. My allergies this year are horrible. I wonder why... lol. The guy that originally owned that used to keep it all mowed down and it was really beautiful. He got old and finally died, last we heard the lot had sold, and since that lot is empty we assumed a house would be going up. Well, that was a couple years ago and we haven't seen anything since, and the field is neglected. The deer love it. So do the other critters. Big snake year, must be a boom in mice.

So I'm working on the whole big picture now with my psychologist, why Pinky showed up, how 'we' all tied together after blowing apart for so long, pretty much the story of psychological scarring and healing as a person on autism spectrum. It's complicated and full of sad-scary-funny and very soon now I hope it's a real thing on shelves. I've been 'out' as autistic for over ten years now, and out since about 2014 or so about all my internet history.

I had a weird mental picture yesterday of running into a particular person (not from around my area or family) again if I wind up traveling for marketing or something and how that could conceivably blow up into a big deal, and then I started wondering if that guy is still even alive since he was taking over another drug lord's territory in a huge city when he was still only 17 years old, already on the run from another state. I mean, would it be awkward? I used to hang out with him and his girlfriend and watch TV in their apartment. I have a long list of people I wonder about, many of them either off the grid or living double lives or simply just cut off from former families and friends because huge life changes over orientations and stuff. Other people I simply just haven't kept up with but still find on the webs apparently living pretty normal lives. People are people are people.

poster child

click for more demotivation

Sorry about yesterday, was running around town and wanted to check something.

Big A++ on my 6 month followup with my sleep doctor. I'm very difficult with med compliance, but it sounds like I'm one of the most CPAP compliant people they've ever seen. Srsly, 2 decades on 6 or less hours of sleep on 90% of nights, and for a number of those years it was 2-4. I was the poster child for 'sleep deprivation won't actually kill you'. I have a will of steel and a healthy fear of dying in my sleep. Y'all fussing about you'd rather die than live with CPAP, your choice, and see you in the next life. I'm busy and I've got things to do.

My summer syllabus is working beautifully so far. I might share it sometime. It's a maintenance aka back on track schedule that commands a rhythm of regular down time, and my fasting glucose this morning is already down to 94. Right? It was 110 ten days ago. Doing this without diabetes meds, guys. Controlling internal environment, balancing incoming chemicals (pain control), I can do this. It's getting more and more obvious that pain referral, while being a tricky bastard, can be tricked itself. Psychoneuroimmunology. You can learn to spell it just as I did. You can also check it out. If you want more in-depth, here is wikipedia.

Thanks to rain gods, fertility goddesses, wood nymphs, and field fairies, the pixie dust around here is obnoxiously high and even worse when it's being thrown about during mowing. Our tiny grasslands nestled all through Mirkwood are as lush as I've ever seen them. Still cranking around the clock on zyrtec and benadryl, and still at least 6 weeks away from ragweed season. This year promises to be a real booger. Get it? Nvrmnd.

Yeah, I dunno wassup with my brain this morning. It seems a bit jolly. Maybe it's the blood sugar coming down. Hope this means my crabby spell is about over.

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

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

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


This is a writing exercise while I deal.

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

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

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

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

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

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

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

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

~4 hours later~

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

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

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

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

~~~~~~~~~

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

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

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

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

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

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

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

x's & o's

My new work out shoes.

Ode to @bonenado making it through Easter surrounded by women on all sides, including mom, sister, daughter, granddaughter, wife...


I mostly stayed in Mo Creatures. Bunny helped me name a raccoon and hunt for chicken eggs and then we had a discussion about why a rabbit didn't have her name, so another player helped me make a baby bunny and we named it after her. Outside of minecraft, blurs of activity happened in spurts with quiet times in between while the blurs ran around seeing other blurs, lol. Between being autism spectrum and aging through fibro, even though I'm having a fantastic year so far, inside my mind I feel like I'm on a constant lag. My psychiatrist says what I'm feeling doesn't match what others observe, but I think it's because I'm just really good at faking y'all out, lolz.

Halfway through April and so far so good on allergies. This was always my big airway rescue month for years, keeping my fingers crossed this'll make my 2nd year in a row not winding up in ER or clinic for pred rescue. I've hit 100 3 times now I think on my CPAP score, meaning I'm making it 6+ hours with good mask seal and low apnea counts. I can tell, though, that central apneas are going to continue to be a huge deal if I take meds any time after 4 p.m., so I'm still excruciatingly med sensitive, and no wonder I spent 20 years being a super insomniac. I used to think I made it through being ejected from that wreck without a head injury, but it's coming up with my sleep doctor now that possible brain stem area concussion might be the culprit behind me not breathing in my sleep. All this neck, jaw, and lower skull work in physical therapy can't solve that problem, so as I age, I'll probably be higher risk for something as simple as not breathing in my sleep because my brain can't tell me to wake up and breathe, and CPAP doesn't fix that kind of apnea. It can, however, make sure other apneas are solved and bring my OSAT up, and more oxygen to my brain means more overall continued healing and health, and more healing means a better chance of my brain being able to make me breathe when I stop.

I have always felt I'm here on borrowed time, and like I'm racing time to get done what I'm here for. I've said several times during crisis "I'm not done yet." I've never said "I'm afraid of dying." I'm very much afraid of having to leave the game board before I'm done here. Life sometimes feels like a Monopoly board and sometimes feels like a Parcheesi board. My life feels like both, all mixed in with chess. (Imagine Parcheesi chess Monopoly...) I've thought this way since I was a kid. The reason I write so much on the internet is because I don't know when I'll have to stop, and I can't count on there being a 'later' to do things. Between autoimmune reaction disorder (anaphylactic reactions) and central sleep apnea, even really good days for me could be over very quickly. I have lived like this every day for many years, always knowing today could be my last day. I'm working very hard on increasing percentages, ratios, and chances, but sometimes it feels really important that I tell people I love them just in case.

By the way, I'm NOT writing this because anything feels urgent or imminent, lol. I used to go through horrendous anxiety attacks that were way worse for feeling like I'd die any second than this feels. I actually feel really well the last few months compared to the last ten years, but those who know me know I'm always ready for that other shoe to drop, because it's just a habit. I'm writing it because I'm thinking it. Being on CPAP has brought this to a much more #inmyface attention.

What a morbid Monday, sorry about that. I'd better go do some chores.

lessons

the legendary red rock

3-day cervicogenic headache aside (mimics migraine), I thought our first weekend with Bunny moved in went really well. I have 2 days left in physical therapy this week (doing my usual fibro-flare kickback against all the local stimulation and then sleeping better with my neck in a weird position, plus dental chair for teeth cleaning, yowza to the neck #uffda), my blood pressure seems to be settling around 116/78 kind of stuff (huzzah! CPAP, guys), I finally broke through on that stupid fluid retention from the big med change in January (still can't believe how much that bossed my whole body around), and yay we're finally back to Monday routine.

Allergies- don't wanna jinx myself, but CPAP is super duper for helping control so far. April is my bad month every spring. The air I breathe through the night now is double filtered. So far I'm using only half the antihistamines I was using last year and breathing comfortably, but oak pollen is just now really ramping up (birch is already high), so we'll see where I am a week from now. People around me, meanwhile, are struggling. I've talked before about how quickly pollen saturates a house in a variety of ways with tips on how to manage that.
the definitive last word on living through a ragweed tsunami

Still euphoric, but it seems to be pretty controlled. This is the 12th day, which is usually about where it starts tapering off for me. Feeling pretty confident that I won't go through a crash and burn once it does. I think this is the best controlled big euphoria I've had, and despite all the extra stress around me, I still managed to float through quite a bit of it even though I was controlling the float level.

I'm not letting myself look at work I feel isn't getting done. I'm hugging myself for getting through all this huge stuff intact and not worse off. I think my family is a good team because we know each other so well and we're all into problem-solving, and somehow we all seemed to click into about the smoothest problem fix transition we've ever gone through together.

Number one lesson learned- no matter how smart a 3 year old seems, the probability of treasure winding up in one's tummy is 100%, pretty much just a matter of time. Bunny's amazed disbelief at how in the world it had to and actually did make its magical reappearance still cracks me up. Watching this learning process has been delightful and opened up all kinds of new thoughts about thought processes in my own mind. The conclusion, as always, is that humans in general don't 'know' anything without conscious investigation and observation, and all our knowledge as a species is cumulative. Left to our own devices, we'll always just keep swallowing metaphorical rocks and not know what to believe.

Quick summary- I'm tired, and we've still got a long way to go. I can do this.

This was my lullaby in my headphones last night after everyone else settled in. One of my last thoughts before I finally drifted off was how I never seem to talk about how much the Joker has filled background gaps in my head since I was a kid. I saw all the old Batmans in the 60s, the cartoons, all the movies. I love Jack Nicholson, but I think Heath really nailed it.

bossy Pinky

It's like I'm in the third grade again doing sticker charts, but I love it and of course I'm crushing it, just like I did the timed multiplication table.

I've discovered I can dye leather, and even enchant it. There is a tie-dye option I'm going to try soon. The light stuff is enchanted iron, the tunic is leather.

Up to 300 3X a day on gabapentin now. Actually makes a difference, but definitely still feel what it's muffling. It's like adventuring into the nether regions of weird. Just keep moving.

Oh, yeah, keep reminding myself to update my medical bracelet. One of those meds.

Most of Christmas is paid off, did that yesterday. Calendar sync was off again, no idea wtf I do messing that up. I can have someone in my ear TELLING me THIS DAY and I still write it all on the wrong day. It isn't until I see upcoming appts on a list online that I realize I got the day wrong. See, this is why Pinky gets so bossy...

Pinky is also noticing the we snacked our way back to first of the month weigh-in. 😠STOP THE NACHOS, GUYS. Sheesh. Oh, right, we're blaming the med dose increase, NO WE'RE NOT. STOP. EATING. Dang it, always cleaning up after a party...

#transparency I had to *learn* to think of me as "I". #aspienado has been 'we' since we were a small child. We're working on that in psyche therapy this year.

Oh, great, my headphones just went out. *breaking out the next pair* That's right, I have 3 more on standby...

You are looking at the world's fastest CPAP adapter

You are looking at the world's fastest CPAP adapter.

lol, Kai is looking at you

It's just such a cool machine, I played with it through most of the first night and set up the app account at midnight because I still wasn't asleep. But last night I knew what I was doing. Got the warm up going, set ramp for 15 minutes, humidity at 3, plopped my headphones on and watched youtube vids until pressure was normalized, then tossed them aside and rolled over into 7 hours of bliss. I remember sorta barely waking up to reattach one of the band loops, but otherwise I think I just had my first normal night of sleep in decades. I don't even remember dreaming. I always remember my dreams, usually very vividly.

They say blood pressure drops, mine was a bit dramatic. First reading this morning was 105/69 and I just laughed. 30 minutes later it's at 125/78. I'm one of those 140/90 people (170/110 sans BP med), and my doctor is happy if it's 138/87 kind of stuff on BP med. (We've tried everything over the last 6 years.) Fasting glucose was 88, nice to see it below 90. They say you lose weight too, looking forward to that happening. *crossing fingers*

I'm very surprised my neck isn't bothering me too badly. Usually when I sleep hard, I wake up with rather vicious neck pain. This is fairly mild.

Of course, this could all go horribly wrong tonight, but for now, I'll take it. 20+ years of super insomnia might be over soon.

So, when I first went in, I was lapsing into 78% O desat and not waking up a lot, compared to some people. Some people wake up anywhere from 40-100 times an hour. I have felt for a very long time like sleep is bad, and I spent years making myself stay awake until it was just part of me to be a super insomniac. I grew terrified on pain meds and muscle relaxers that I wouldn't wake up one day. My brain was doing everything in its power to jolt me awake enough to breathe, even ten years ago when they first tested me and didn't find apnea (but they kicked me out early because I wouldn't sleep), and over the last few years it's like my brain is too tired to keep doing that any more. I get so super relaxed that I just stop breathing, even if airway is clear, and I used to wake up to horrible adrenaline surges and tachycardia events. The tachycardia was real, got surgery, but I'd still wake up into super anxiety attacks after that. It was like my brain was doing everything it could to make me breathe in my sleep. Years and years and years of that, and over time it's like it just can't keep that up any more.

I can't help wondering if this is partly from the injuries in that car accident. All this neck stuff at the top of my spine, right under my skull, nastiest pain for many years, and it took years of physical therapy and chiropractor and home stretches and core strength to finally break through all that pain static. But the pain coming down a little didn't make sleeping any easier. One position for too long wakes me up in a slamming headache across the back of my head right above my neck, so this whole fibro-pinched nerve thing is pretty miserable sometimes. So if that amount of problem is going on right next to my brain, I wonder how it affects my brain. Then you throw handfuls of narcotics and benzos and a variety of other colorful goodies onto that, and no wonder I've been fighting sleep most of my adult life. I stop breathing when I'm not conscious. That was my number one motivator cleaning off meds.

Also, not sure yet if this is being said prematurely, but I'm not having the stuffy nose or sneezing at all this morning. I think I don't handle humidity well. I grew up in the desert southwest, and I feel like I'm hanging out in a heated swimming pool area when I'm breathing summer humidity in MO, so I think I was overreacting to air that was a little too moist for me yesterday morning. Time will tell.

So all y'alls who live way more normal lives and think CPAP sucks, just wanna put it out there that I love mine and I really hope good things come of this. If I come to hate it later, this is here for me to remember that it started well.

Alice in Lava Land

Ok, sexual orientations of all ages, (remember when we used to just say 'boys and girls'?) (Is that politically incorrect now?) (Because personally, I am alt-aged in my head, I am both young at heart and old of soul, and even though I don't take offense at someone asking my age, I don't see how that has anything to do with anything unless you need to know if I'm a meemaw on medicare.), where were we...

This is a 3-part update thingy because things. Minecraft (pure survival), the sleep study fallout and consequences, and my git'r'dun list for the rest of the month. (If you are only interested in the CPAP fallout, I copied that part to my spaz blog.)

MINECRAFT

uffda- Singleplayer, no cheats except being able to see my F3 coordinates. Everything is from scratch. I've had the launcher open in play mode (not paused) for 52+ total hours over the last two weeks, first mentioned in Pinky vs @bonenado. During those 52 hours I have died 10 times, slept in a bed 111 times, harvested 2K+ coal blocks and made 3,573 torches, established my dominance at world spawn and several perimeter outposts covering almost 1000 square blocks, and have lately finished building a sweet very big 3- story house on the edge of an extreme plateau. I killed 18 horses to make books until I found a village and swiped all theirs, set up a library, then went about learning how to make obsidian from scratch (which involved very dangerous climbs to lava sources with buckets), and last night made my first enchantment table from scratch. I have yet to run into a single cow, so I don't have milk for cake, but I did make my first pumpkin pie yesterday, also.

Minecraft survival requires extreme braining skills. Over the last year I have gained orientation and planning strategy skills that I've noticeably been able to apply to real life.

Also, minecraft has been phenomenal for getting through anxiety. If you've never reeled off a cliff into PTSD induced anxiety surges and an hour of weeping just writing a blog post or book chapter, try it sometime. Get on that old roller coaster of confession and start screaming, it's a real trip. You guys don't see how many times I walk away in mid sentence while I'm writing because it's so real and immediate just addressing memories and feelings and reconstructing those into readable format that it's all I can do sometimes to come back. Minecraft is a really awesome relief diversion for me, plus it keeps me creative and on my toes.

CPAP

My apnea-hypopnea index was 17 (I was told that meant I woke up an average of 17 times an hour), and my desat was 78%, which is importantly not good and scary bad. Blood oxygen saturation ideally shouldn't fall below 80%, and if it does, it's considered critical. (Simplistically, I'm on my way to congestive heart failure if I don't correct this, if something else doesn't get me first.) During sleep study, according to the document I link in the next paragraph, 75-80% is considered moderate, and less than 75% is considered severe, so I'm kinda cutting that one close. (Ever wonder how people just die in their sleep? Now you know.)

How to Interpret Your Sleep Study That's a pdf document, so give it time to load, actually very cool with pictures and graphs of how it all goes down on the testing end.

I have 4 out of 6 qualifying CPAP symptoms- daytime sleepiness, hypertension, insomnia, and mood disorder. I've lived with all this for 2 decades. I've never yet had a stroke and never dx'd with heart disease, although both are prevalent in my mom's side of the family, and once that stuff hit my mom, she went down fairly quickly. I have been doing everything right- nutrition, exercising, med monitoring, excellent bloodwork and health according to everything I'm tested for. That means nothing if I'm not getting enough oxygen.

Last night I found myself ripping my mask off at first, but that stopped and I slept great after I lowered the humidity. This morning I'm sneezing and runny nose stuff like allergies, but apparently this is common and someone in comments said lowering the humidity even more helped, so I'm going to try that. I'm already on round the clock zyrtec with benadryl on standby, but we haven't started cedar pollen here in Mirkwood yet, so I need to figure this out before successive allergy seasons blow back up on me. Unless I actually have a real allergic reaction (and you know I'll be watching this), I think the O sat level coming back up is important enough to keep trying. At any rate, saline mist helped to dissipate that discomfort this morning.

Top 10 Ways To Solve Common CPAP Problems and Discomfort

Side note- I'm finding out that sleep apnea can happen in all ages and body types, and you don't have to be old and fat to 'get' it. I had a sleep study done 10 years ago that I wish they'd followed up on more rigorously, because even though they didn't see apnea, they did see brain rhythm lending to insomnia, which I was probably born with. I'm sure nearly ripping my head off ejecting from a vehicle crash didn't help anything, but for years I've lived with so much neck pain and weird sensations, including pain with swallowing, I can only wonder if part of my need for CPAP now is from an ongoing degeneration around the nerve injuries I acquired in that wreck. It's interesting that I barely weigh 5 pounds more than I did at the time of the first sleep study ten years ago, pretty sure 5 pounds wouldn't cause apnea on its own, especially since I'm currently 40 pounds down from highest weight. If you are holding back from looking at the possibility of a sleep apnea diagnosis because of stigma, you might literally be holding your life in your hands, so check into it if you're having symptoms.

TO DO

Forms... ug.

• Representative payee report for social security is due.
• Out of network transport provider wants insurance info.
• Could have sworn there was something else and apparently I've already misplaced it, great.
• Get a birthday card out before it's late.

Since I'm on my make a Plan stuff, may as well toss in that I'm past two weeks cutting the caffeine in half and about over that nasty withdrawal headache, so now I'm working on the slow xanax taper I wanted to start last fall but wisely decided to wait until after holidays. Absolutely no idea if that enhanced my big meltdown, but I'll be conservative and say probably. GABA receptor stuff is no joke. Me and low dose benzos go waaaay back. This ain't my first rodeo getting off the stuff, and I know that patience is my biggest virtue on this little journey.

I'll be honest, the weird left side intractable nerve pain I live with spiked quite a bit overnight from the extra stress of learning to sleep with CPAP, and it's not pleasant sitting here feeling little pain spikes down my left ribcage and shoulder (fibro related costochondritis) (my heart is so conveniently in between, so I'm also dealing with the anxiety that pain lends a hand to), my sinus feels stuffy and uncomfortable, and I'm sitting here thinking 'and it's not even bitterly cold and snowy/icy and there's no big allergy season YET', so I need to divert myself back into chores around the house and MINECRAFT. It's all about survival. I'm using virtual survival to survive both depression and very real medical challenges, so it's back to the lava I go.

I can do this.