#part time mca

[melodymorningdew]

Ihatemybodyihatemybodyihatemyodyihatemybodyihatemybodyihatemybodyihatemybodyihatemybodyihatemy-

[thebibliosphere]

Whenever I post about house stuff there’s always some well meaning people and the occasional vindictive shit head who thinks we didn’t have our home inspected before we bought it.

We did. It passed the private inspection we paid for in order to get our mortgage and two inspections done by the city.

The problem with my house is that it was owned by a landlord who did all kinds of illegal and sketchy shit to maximize capacity and resale value but also would require you to take down walls to find. And for those of you unaware, they don’t let you walk around with a saw and cut holes to inspect behind the drywall.

The shithead hid things behind fake walls. Literally. He put a bunch of chemicals and paints into a crawl space then drywalled over it. There is drywall on top of drywall (or there was before we took it down). He put carpet over the asbestos tiles—which is technically fine. It’s safer to seal asbestos away than remove it… except he also covered the drain for the house so the basement floods and then the carpet rots and in turn starts breaking down the asbestos tiles, making them into a hazard. He built the basement himself so that the drywall was sitting on the concrete slab—something we couldn’t see without removing the trim—causing them to wick moisture from the floor and rot until we had black mold everywhere.

The electric parts that were visible were all up to code, but again, anything that could be hidden was done so, hiding shit like a dishwasher that had been hot wired into the wall through a light plate fixture under the sink. Or the 240v socket that used to power an electric stove which had been pulled through the floorboard to power the tumble dryer. (Or the gas stove that we swapped for electric because it kept trying to kill us and then we realized he’d run a gas pipe from the water heater to power it. The plumber swore a lot about that one when he finally realized that one.)

Plumbing all looked good until you realized some of the new pipes were just pvc cut to go around the old lead pipes. Something you couldn’t see unless you got up close and personal during the inspection, and we’re talking up on a ladder jiggling the pipes around which is also generally something don’t let you do. Not to the extent we would have needed to.

The man was unhinged. And there’s very little we can do about it because we signed an “as is” thing on our mortgage thinking most of the repairs we’d need to do would be minor. Only to find out the house which looked fairly modern and well kept on the surface was actually a fucking Saw trap. And now because of all the shit we’ve uncovered, we have to fix it before we can sell it because no one in their right mind will buy a house with declared asbestos—even predatory developers hesitate on that one.

So if we’ve got to fix this place up, we’ll fix it up for us because god knows, even if we managed to sell this place, we can’t afford the mortgage rates right now. (And while yes, apartments are an option, they make my MCAS a lot less stable because you can’t control the shit your neighbors use, nevermind things like a shared laundry facility where everyone wants to smell like “a spring summer breeze” that to me smells like death by fragrance induced anaphylaxis.)

So yes, we’re stuck with this place. For now. A place we had inspected multiple times and were still let down by the reality that people hide things and will do so in the most imaginative ways possible if it means they can make a profit.

The furnace dying the instant we moved in wasn’t a good sign, but shit happens. That’s home ownership. The gas leaks we had last week? Also home ownership. It had passed yearly inspections up until now. Appliances break down and require maintenance, especially gas ones. In an ideal world we would have gotten another five years out of the furnace, but alas, it chose death so we had to yeet it.

So, yeah, if you’re the shithead currently going off in my inbox about “stupid people winning stupid prizes” I’ll take that apology now.

[mylittleredgirl]

oh ho ho i have looked up the massachusetts ballot questions and i am so personally excited to vote against the MCAS, the high school standardized test students must pass to graduate. it never impacted my own education because i was in the very last class not to have to take it (late 90s), but i was selected for the pool of beta testers the year before it was universally implemented.

i had a great time actually—get out of class for two days for a test that doesn’t even matter? i enjoyed the process of taking standardized tests (when they didn’t matter) because i had spent most of my pre-high-school days in a homeschool environment without grades, so they reminded of the trivia workbook pages that were rationed out and treated as rewards (in a one room schoolhouse with 5 kids, you take the thrills you could get—public school education was pretty amazing after that).

the most memorable part of it for me was that we got little boxes of raisins as a snack and mine had an inchworm in it. but even then as a dumbass teenager i remember giving feedback that this would be demoralizing and unfair if imposed on everyone. schools chose who would put in the test group, and every one was an A student! what kind of sample was that?

the MCAS wouldn’t become a compulsory requirement for graduation until no child left behind, but it still immediately changed things. my sister was one year behind me, and her experience in the same classes i had taken the year before was so much less inspiring. history and civics teachers who had been painstakingly gathering copies of real articles for decades about historical events had to teach from state approved textbooks. the cross-disciplinary fun projects for multiple subjects were cancelled. older teachers started phoning it in and planned their retirement.

anyway, one of the things i have always felt most grateful for in my life is that i squeaked through my public education before state testing choked it. it was a small rural public school (pretty well funded though, there are a lot of fancy summer homes in property taxing distance), and had very passionate teachers who were having extra creative fun squeezing out the last of their independence, knowing that testing was coming. i was one of the canaries in the coal mine and i will take great pleasure if my vote helps shut it down.

[seasonallydefective]

Okay, actually, let’s do a little experiment. Same question I asked on Reddit. Let’s see how people respond.

POTSies of tumblr — have you heard that using a wheelchair is contraindicated for POTS, and if so, could you please explain why?

On my end — I’m a pretty damn new ambulatory wheelchair user, I’ve got hEDS/POTS/MCAS, and my life has seriously been changed by getting a wheelchair and using it when I need it.

I can be having a day where standing and doing literally nothing makes my heart rate jump to 145+, and I can be zooming around the Walmart in my wheelchair that same day with a heart rate of 120. I don’t feel that self-propelling is worse on my joints than walking (especially days when my hips/knees/ankles are particularly unstable).

I totally believe that there are cases where a wheelchair is not a great idea. But the thing that was pitched to me, and what sparked my question, was a claim that in MOST cases of POTS (especially with EDS?), it’s going to make you worse. I’m more than open to any rationale that backs this up, it was just surprising to me!

Reddit sucks for a litany of reasons, but allowing people to impact the amount of points your account has because you asked a question is probably one of the bigger ones.

[wheelie-sick]

I get so fucking frustrated with hEDSers (people with hypermobile ehlers danlos syndrome)

no, you are not the most discriminated group of people in the disabled community just because other disabled people have a problem with hEDS community culture.

when disabled people with other conditions share criticism, even if that criticism is delivered in a mean way, that is not an attack on you specifically. stop taking it personally. unless you are doing what that post is complaining about them it's not about you (and if you are doing what that post is complaining about... consider fixing that)

there are very real problems with the way hEDSers treat other disabled people. plenty of people with both hEDS and another unrelated condition (like me!) will tell you this. instead of crying that other disabled people are so mean why don't you 1. examine if you are part of the problem 2. fix it if you are and 3. contribute to solving it community-wide

you aren't making us (people with unrelated conditions) less frustrated and upset with the hEDS community by throwing a tantrum every time someone dares to criticize it

unrelated condition = condition not caused by or heavily associated with hEDS (so not POTS/dysautonomia, MCAS, gastroparesis, etc.)

[dissociacrip]

why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."

but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.

that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.

One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.

(Dr. Goldstein, The Dysautonomia Project)

worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.

anyway, i legit have NEVER seen this discussed until recently and i thought i should share.

[c1qfxugcgy0]

adventures in QA

(previous post in this series)

My shop in Advanced Midbody - Carbon Wing (AMCW) at Large Aircraft Manufacturer (LAM) is at the very end of the composite fabrication building. Hundreds of people carefully lay up a hundred foot long slab of carbon fiber, cure it, paint it, and then we totally fuck it up with out of spec holes, scrapes, primer damage, etc. The people who write up our many defects are from the Quality Assurance (QA) department.

Every single screw and rivet on a LAM aircraft can be traced back to the mechanic who installed it. Back when even everything was done in pen and pencil, it was joked that the paper used to produce an aircraft outweighed the plane itself. Now that everything is computer-based, of course, the amount of paperwork is free to grow without limit.

(Haunting the factory is endless media coverage of an emergency exit door plug popping out of an Advanced Smallbody - Upengine (ASU) plane during a routine flight a few months ago. Unlike that airframe's notorious problems with MCAS, this was a straightforward paperwork screwup by a line worker: the bolts were supposed to be tightened, and they weren't.

As a result the higher ups have visited hideous tribulations on non-salaried workers. Endless webinars, structured trainings. Here at the Widebody plant we have received a steady flow of refugees from the Narrowbody factory, hair-raising tales of receiving one hundred percent supervision from the moment they clock in to the second they clock out from FAA inspectors who can recommend actual jail time for any lapse in judgement.)

A single hydraulic bracket Installation Plan (IP) is around four brackets. The team leads generally assign two bracket IPs per mechanic, since each bracket set is something like a foot apart, and while working on the plane is bad enough it's much worse to have another mechanic in your lap.

Let me list the order of operations:

One: Find where you're supposed to install these brackets. This is harder than you might think.

Firstly, it's a hundred foot long plank of carbon fiber composite, with longitudinal stringers bonded to it to add stiffness. The stringers are pilot drilled in the trim and drill center, a truly Brobdingnagian CNC mill that trims off the composite flash at the edges and locates and drills part holes for us. But there's a lot of holes, so you must carefully find your set.

A minor difficulty is that the engineering drawings are laid out with the leading edge pointing up, while the wing panels in our cells hang from the trailing edge. Not so bad, you just rotate the paper 180 when orienteering, then rotate it back up to read the printed labels.

A major difficulty is that the drawings are from the perspective from the outside of the panel. But we work on the inside of the wing (obviously, that's where all the parts are installed) so we also flip the drawings and squint through the back of the paper, to make things line up.

Large Aircraft Manufacturer has a market cap of US$110 billion, and we're walking around the wing jig with sheets of paper rotated 180 and flipped turnways trying to find where to put brackets.

Oh well, we're paid by the hour.

Two: Match drill the aluminum brackets to the carbon fiber composite stringer. I can devote an entire post to the subtleties of drilling carbon fiber, but I can already tell that this post is going to be a miserable slog, so I will merrily skip over this step.

Three: Vacuum up all the carbon dust and aluminum swarf created during this process. This step is not optional, as your team lead will remind you, his screaming mouth clouding your safety glasses with spittle at a distance of four inches. LAM is very serious about FOD. Every jet airliner you've ever ridden in is a wet wing design-- each interstitial space is filled with Jet A. There is no fuel bladder or liner-- the fuel washes right over plane structure and wing hardware. Any dirt we leave behind will merrily float into the fuel and be sucked right into the engines, where it can cause millions in damage. No place for metal shavings!

If you are nervous about flying, avoid considering that all the hydraulic lines and engine control cables dip into a lake of a kerosene on their way from the flight deck to the important machines they command. Especially do not consider that we're paid about as much per hour as a McDonalds fry cook to install flight-critical aviation components.

Four: Neatly lay out your brackets on your cart, fight for a position at a Shared Production Workstation (SPW) (of which we have a total of four (4) for a crew of thirty (30) mechanics) and mark your IP for QA inspection as Ready To Apply Seal.

Four: Twiddle your thumbs. Similarly, we have three QA people for thirty mechanics. This is not enough QA people, as I will make enormously clear in the following steps.

Five: Continue waiting. Remember, you must not do anything until a QA person shows up and checks the box. Skipping a QA step is a “process failure” and a disciplinary offense. From the outside, you can observe the numerous QA whistleblowers and say “golly, why would a mechanic ever cut a corner and ignore QA?” Well...

Six: QA shows up. Theoretically, they could choose to pick up the mahrmax you prepared for them and gauge every single hole you've drilled. But since we're three hours into the shift and they're already twenty jobs behind, they just flick their flashlight across the panel and say “looks good" and then sprint away. Can't imagine why our planes keep falling out of the sky.

Seven: Apply the seal to the bracket. P/S 890 is a thick dark gray goop that adheres well to aluminum, carbon fiber, fabric, hair and skin. Once cured, it is completely immune to any chemical attack short of piranha solution, so if you get any on yourself you had better notice quick, otherwise it'll be with you as long as the layer of epidermis it's bonded to. LAM employees who work with fuel tank sealant very quickly get out of the habit of running their hands through their hair.

Eight: Now you wait again. Ha ha, you dumb asshole, you thought you were done with QA? No no, now you put up the job for QA inspection of how well you put the seal on the bracket. Twiddle your thumbs, but now with some urgency. The minute you took the bottle of seal out of the freezer, you started the clock on its "squeeze-out life." For this type of seal, on this job, it's 120 minutes. If QA doesn't get to you before that time expires, you remove your ticket, wipe off the seal, take another bottle out the freezer, and apply a fresh layer.

Nine: Optimistically, QA shows up in time and signs off on the seal. Well, you're 100 minutes into your 120 minute timer. Quickly, you slap the brackets onto the stringer, air hammer the sleeve bolts into position, thread nuts onto the bolts, then torque them down. Shove through the crowd and mark your IP "ready to inspect squeeze out"

Ten: Let out a long breath and relax. All the time sensitive parts are over. The criteria here is "visible and continuous" squeeze out all along the perimeter of the bracket and the fasteners. It is hard to screw this up, just glop on a wild excess of seal before installing it. If you do fail squeezeout, though, the only remedy is to take everything off, throw away the single-use distorted thread locknuts, clean everything up and try again tomorrow.

Eleven: QA approved squeeze out? Break's over, now we're in a hurry again. By now there's probably only an hour or two left in the shift, and your job now is to clean off all that squeeze out. Here's where you curse your past self for glopping on too much seal. You want to get it off ASAP because if you leave it alone or if it's too late in the shift and your manager does feel like approving overtime it'll cure to a rock hard condition overnight and you'll go through hell chipping it off the next day. You'll go through a hundred or so qtips soaked in MPK cleaning up the bracket and every surface of the panel within three feet.

Twelve: Put it up for final inspection. Put away all your tools. (The large communal toolboxes are lined with kaizen foam precisely cut out to hold each individual tool, which makes it obvious if any tool is missing. When you take a tool out, you stick a tool chit with your name and LAMID printed on it in its place. Lose a tool? Stick your head between your legs and kiss your ass goodbye, pal, because the default assumption is that a lost screwdriver is lurking in a hollow "hat" stringer, waiting to float out and damage some critical component years after the airplane is delivered.)

One tool you'll leave on your cart, however, is the pin protrusion gage. There is a minimum amount of thread that must poke outside of the permanent straight shank fastener's (Hi-Lok) nut, to indicate that the nut is fully engaged. That makes sense. But there's also a maximum protrusion. Why?

Well, it's an airplane. Ounces make pounds. An extra quarter inch of stickout across a thousand fasteners across a 30 year service life means tons of additional fuel burnt. So you can't use a fastener that's too long, because it adds weight.

On aluminum parts, it's hard to mess up. But any given composite part is laid up from many layers of carbon fiber tape. The engineers seemed to have assumed that dimensional variation would be normally distributed. But, unfortunately, we buy miles of carbon fiber at a time, and the size only very gradually changes between lots. When entire batches are several microns oversize, and you're laying up parts from fifty plies and an inch thick, you can have considerable variation of thickness on any given structural component. So you had better hope you had test fit all of your fasteners ahead of time, or else you'll be real sorry!

And, if you're really lucky, QA will show up five minutes before end of shift, pronounce everything within tolerance, then fuck off.

And that's how it takes eight hours to install eight brackets.

(next post in this series)

[batwynn]

Uh so. Tiny health update just to give folks who are waiting for things a bit of an explanation as to why everything is taking so long. 🥲

TW: health and doctor stuff below.

So, still no Humira. Need to redo bloodwork that I just did because no one can seem to find it. At this point idk how much of my body is failing rn is due to the lack of immunosuppressant or not but jfc. 😡 Additionally, the last bloodwork I had at my ER visit had no explanation for my heart palpitations but I am apparently not clotting and have very little… like… blood?? In my body? I guess pretty serious anemia?? I don’t know because they didn’t say shit about it when I was there. The fun part is, no follow up with primary about it at all. Saw some other random guy who didn’t look at my record and prescribed a med I can’t take with multiple of my regular meds. No one wants to talk about it, never mind help me with it. So I guess I’m going to try taking iron supplements with my already fucked up digestive system and hope for the best.

On top of that, my POTS like symptoms have gone from mild and only a problem when I have a BM to all day every day dizzy and faint and weird blood pressure. I’m trying to do all the tips and tricks like compression socks, sitting cross legged, drinking gatorade (that I have MCAS reactions to lol) and adding more salt to my diet. (Sodium was a little low at the ER) but it’s been a really big problem just like… trying to exist and do stuff. Sitting at the computer makes me dizzy and faint. Being in the car, dizzy and faint. Bending down to feed the cats. Black out dizzy and faint. Dishes. Dizzy. Faint. Etc etc.

All this to say, I am trying really hard to fix this at home so I can keep working but it’s kind of not working and my next dr apt is in September. Honestly, I’m really tired of feeling so shitty and never getting any help. It’s been a lifetime of this, and I’m sick of it. I’m really, really sick of it.

So, yeah. More delays than I had hoped are happening. Working on art stuff is taking me all day just to do one thing. I’m spending a lot of my time sitting cross legged in my bed propped up by pillows so if I do pass out I don’t get brain damage from hitting the floor at 900mph. I really am trying, I promise. I take this seriously, especially as this is my only way to make a living and I genuinely love doing it. Hopefully the iron supplements will make a big difference and hopefully my shitty stomach won’t completely reject them. I feel silly for being scared of an iron supplement, but living with gastroparesis and emetophobia has not been great for my fears and anxieties lol. 😰

If you could spare a little finger-crossing for me, I would really appreciate it. Send ‘don’t be shitty’ vibes directly to my organs please and thank you!

[creekfiend]

Hi Pip I’m sorry you’re having a bad time with your MCAS and stuff but I just wanted to thank you for always posting so honestly about the stuff going on in your life. You were the first person I ever saw talking about fibromyalgia, I’d never heard of it beforehand, and it made me feel a lot less alone in the murky depths of chronic illness when I got diagnosed! I hope the emu oil is a safe alternative for you, I would never have thought of emus being particularly… oily? Idk what part of the emu the oil is from tho

the emu oil is rendered and clarified fat!

thank you, I'm really glad that talk about my stuff has helped u. 💜 I appreciate your message!

[morimementa]

Banal Retired SoapGhost headcanons

Soap still does demolition work, but in the construction field. He's got a nice office job which he has mixed feelings about.

Ghost works part time as museum security, part time as a nightclub bouncer. He finds the museum job pleasant because it's not sensory overload and people rarely talk to him, but boring for the same reasons. By contrast the nightclub is hell on his sensory issues but he enjoys strongarming the odd jerkwad.

By some miracle, Soap's hearing is not completely destroyed. It's still adequate, but he's learned BSL and ASL as a precaution and he's discussed any potential need of hearing aids down the line with his GP.

His ears may be fine, but remember the knee brace in MW2? Yeah, that's still an issue. It's an old battle wound, so he's had time to find helpful therapies, but whenever a ripper of a storm starts blowing in, expect to find him on the sofa with his leg propped up, muttering curses.

Ghost wears unscented deodorants, uses unscented soap, refuses to touch anything with perfume in it. This is a common thing in soldiers with PTSD, apparently. Their neighbor has MCAS and gladly shares product recommendations while breathing a sigh of relief that there's at least one house they can safely visit without triggering a flareup.

Fireworks are one huge pain. At least they don't have the fourth of July to worry about. One time someone in their neighborhood got a little too freaky with the bottle rockets. The next day Ghost came over to "politely tell them to keep it down". There hasn't been a repeat since.

Those neighbors now view him with a combination of terror and awe. As is proper.

Soap has a severe fear of heights due to the whole being-dangled-out-a-window thing. Combined with Ghost's claustrophobia, they both wind up taking the stairs a whole lot.

(Ghost offers to carry Soap on the days when his knee acts up. Soap cuffs him upside the head and laughs at this.)

(He'd still say yes if it meant not subjecting Ghost to an unexpected elevator.)

Civilian life gives them a lot of time to unpack their dual PTSD diagnoses. Ghost has a harder time letting his guard down because he's been on guard for most of his life.

Soap's ADHD was less noticeable in the military, but in their shared living space, he tends to lose track of things. At least once a day he goes, "Babe, where the (thing)?" and Ghost is like, "In the (place), dumbass (affectionate)."

Of the two of them, Soap is more prone to nightmares, usually about Las Almas. Ghost has always been a light sleeper, so he tends to wake up in time to either bring him out of it or comfort him when he jolts awake. Soap is always quick to return the favor.

(Ghost will only admit this to Soap but he gets his best sleep with Johnny in his arms. He loves knowing Soap is safe with him.)

Soap's also prone to getting the wiggles in bed, so sometimes Simon sleeps on top of him for that deep pressure goodness.

It goes both ways, of course. Sometimes Ghost comes home from work and goes, "Floor me." And Soap lays on top of him while he rests on the floor because job loud and stupid, husband warm and soft.

[bloopitynoot]

Reading TGCF: Chapter 64

For those who don't know, I am reading TGCF for the first time and sharing my thoughts!

If you have not read it, there will be spoilers! Consider this a warning.

Also- if you want to follow along, I am aiming to post updates daily. You can find all the posts in the tag Bloopitynoot reads TGCF. You can also check out the intro post for context on my read BUT if you followed along with my SVSSS read, the rules and vibe are the same.

Today's tea: masala chai!

I was going to share a video/photo of my tea sleeve progress but it is quite a mess at the moment.

One thing about me is I am hypermobile, part of this is issues with collagen and likely MCAS so my skin can be weird and overly reactive - sometimes, but not always.

Anyways we found out my upper arm is way sensitive to tattooing so I am bruised af right now. I will share the updates maybe after the second skin comes off/next week!!! I don't want to jump scare anyone ahaha.

but for now

let's go chapter 64!

Wind master! My baby! p198

"San Lang, I just need an itty bitty tiny amount of spiritual energy to borrow" Also xie lian: proceeds to eviscerate a bunch of ghosts once again. p199

oo! what a cool little mirror/water demi-plane. 10/10 would want this as an evil lair p200

I love the honourable mention for the random background ghouls just pretending to be scary to escape p201

no! The earth master is not well p202

okay this is the second time that Xie Lian is clocking odd maybe secrets from Hua Cheng. I'm scared to know what it is p205

So ominous! The skeleton in the black water mansion. The jump scare got me. p207

Terminal lucidity is such a cool term p208

This is such a dnd moment. Ming Yi pretty much dead in a corner; "WAIT check for traps!" p210

okay if they're worried about the heavenly tribulation they should be sending Shi Wudu first! p210

Xie Lian screaming into the communication array like a boomer on a video chat is my favorite. p215

Soul shifting again! By the end of this arc the wind master is for sure going to be absolutely ride-or-die besties with Xie Lian. p219

I'm so upset about the earth master reveal!!! :((((((((((

I have been made a FOOL

You can all catch me in the circus from this day forward because I have been made an absolute clown. How many chapters did I go on about the earth and wind master being the cutest. Now I'm over here just -

Damn :((( the skeleton reveal got me too. I feel bad, but also not, because we never even knew the real guy,

[thebibliosphere]

I'm making a concerted effort to fix my sleep cycle at the moment because I know it's going to be one of the first things the new neurologist pounces on when I eventually see her in September.

And I don't know what's different this time, but all the sleep hygiene stuff that has never worked for me in the 30 years I've been dealing with chronic insomnia is actually starting to help.

I'm falling asleep earlier and staying asleep for longer, which is huge considering I've been running at a sleep deficit for about 30 years, usually getting less than 4-5 hours of broken sleep a night.

The only thing I can think it might be is that my MCAS being more stable means I'm not experiencing adrenaline surges late at night.

See, the body dumps histamine as part of the circadian rhythm, and if you don't have mast cell instability, you're usually asleep for this and unaffected (though some people may notice allergic symptoms get worse at night). For me, it always felt like going over the drop of a rollercoaster if the rollercoaster consisted of tachycardia and shaking for a couple of hours. So, I usually choose to stay awake so I can mediate it.

And I'll confess, despite my MCAS being more stable, it never occurred to me that it might make practicing good sleep hygiene easier, so I just... kind of haven't bothered???

Anyway, imagine my surprise when the sleep app I've been using to track my sleep for the last few weeks informed me that I'm falling asleep within 20 minutes of putting my phone down and that I'm actually staying asleep for close to 6 hours at a time.

Also, my body is starting to anticipate going to bed???

It's 8:22 p.m. here, and I just caught myself thinking, "Oh boy, I can't wait to go to bed in an hour."

Absolutely wild. Like, who even am I anymore?

[tangelotime]

Hello! I'm Syd, and I'm tired! In a nutshell, I’m disabled, can't get a job, but also can’t get on disability either, so I have no way to support myself. All I want is to finally move forward with my life, take care of my health, and not have to deal with my abusive family, but without help, I have no way to do that. I’m multiply disabled; I’m autistic and have PTSD and a torn glute, which, thanks to medical neglect, means I rely on a wheelchair and a cane to get around. My doctors also suspect POTS and MCAS, as well as other forms of dysautonomia. I’m in and out of the hospital getting tests and my referrals are getting referrals. On my own, I just can’t afford this forever and I want a diagnosis. The house I am renting is falling apart. My landlord refuses to weatherproof it, and the resulting mold leaves me in full body pain, ruining my health even more. Unfortunately, this is the only place I can get with my awful credit score. Anyone with an abusive family knows how tough it is to survive without that support system. Christmas used to be a time I could spend with the people who loved me most, my grandparents. They wanted me taken care of when they passed away and so they left me an inheritance in a trust fund so it wouldn’t get me kicked off disability. Unfortunately, I was kicked off of disability because of neglect on my father’s part, which dissolved the trust. All the money immediately went to my brother and left me with nothing. My brother refuses to help me no matter how much I’ve asked. I’ve contacted law enforcement, attorneys and social services, all to no avail. For three years I had to take large loans out to survive and rely on abusive roommates, which contributed severely to my mental health issues. I’ve managed to move out of that situation now and with my boyfriend but he can’t work enough hours to afford what we need and take me to my many appointments. We can’t afford to regularly put food on the table.This Gofundme is my last lifeline. $20,000 would let me and my partner stop worrying about how to afford rent and food for a while, put some money towards a motorized wheelchair, and pay for the specialist visits I need. It would buy us some rest. It has been a long, exhausting journey, and there are things I’d like to do that aren’t fighting for my life. I am an artist, and I’m working on a book I’d love to publish some day. Donate to a disabled trans person and help me live long enough to put my mark on the world.

My friend Syd is having a hard time right now and could really use the donations! It's really really hard for them to ask for help so I'm doing it for them lol. They have three hospital visits coming up this week and could use a hand.

If you don't feel like donating for nothing, they also have commissions over on their bsky account!

[nonspeakingkiku]

Intro time!

Name: Kiku (also other names because its complicated)

Gender: FTM, nonbinary, genderqueer

Orientation: Aroacespec, queer

Pronouns: He/Fae

Kiku is part of a DID system, and that makes things like names and figuring out who you are hard. Doesn't help that all of us hosts respond to Kiku and Kiku and another alter have been blurring together a lot.

We are a nonverbal higher support needs autistic person with multiple other disabilities. We are a full time AAC user for multiple reason.

We have apraxia, several learning disabilities, aphasia, adhd, hEDS, POTs, mcas, fibromyalgia, and are pretty sure we have spastic dipelegic cerebral palsy.

We are a mobility aid user (currently forearm crutches, a rollator, wheelchair and white cane) but we really need different ones (a different kind of walker, crutches that fit us properly, and a wheelchair that we own, the one we use belongs to our partner and they let us use it sometimes).

We were born and raised in Appalachia (North Carolina to be specific) and we have come to remember that that is a huge part of who we are. You can take the boy out of the mountains, but you can't take the mountains out of the boy, (once we get our hands on a print copy of Compound Fracture by Andrew Joseph White we'll put a quote here). We currently live in Tennessee, which is closer but not quite close enough.

We are pagan, raised christian, and havf religious trauma. This makes interacting with some communities hard.

We are a speller, and hope to soon have at least a few sessions of S2C to help with unreliable speech and motor loops. A speller is someone who points to letters on a letterboard or types on a keyboard to communicate. We call ourselves nonverbal mostly, but also use other terms, nonspeaking, minimally speaking, unreliably speaking and we have taken to saying "it's compilated" because it is. We call ourselves nonverbal because we are unreliably speaking, what comes our of mouth isn't what we want to say and often does more harm than good, but we can't just turn it off. We grew up, seeming to be speaking, but we couldn't communicate what we needed or wanted to and what we could say often got us in trouble.

Kiku thinks that is enough of a ramble.

Thank to those who read this.

Please don't send us asks to post fundraiser, we don't have enough followers for it to get shared a lot and we can't determine what is bots and what isn't and they stress us out because of that.

We are posting our amazon wishlist here, if anyone ever wants to get us anything off it, feel free but there is no expectation to do so.

Amazon wishlist!

[cripplecharacters]

I'm not sure if I should treat this as an illness or a disability. I'm working on a character who has chronic hives, set in classic Tolkien fantasy. Given the setting, when he first starts flaring up he's marked as cursed by constant burns and is ostracized by society. Once his pain is manageable via temporary magic remedies he becomes a paladin determined to find his patron god and prove himself. She lovingly tells him he's not cursed, and together they work to de-stigmatize his appearance.

Hi lovely asker!

100% agree that chronic allergies and the many other things that come along with it count as a disability. They have knocked me down for day in the past, and doing simple everyday tasks like taking a shower or washing the dishes are things I put off for as long as I can as they're painful and end up knocking me down for the whole day.

One thing about chronic hives and reactions is you start to learn your triggers so you learn what to avoid. For most people, they have set triggers that your body recognizes as such and will alarm too. If you take something like Mastocytosis or MCAS, these disorders are characterized by the instability or abundance of the Mast Cell. And pretty much what this means is you could eat apples for your whole life and then one day your body goes "Hey, guess what I can do" and boom, your having a reaction because you are that apple. The part of this is, sometimes it'll be a one time thing and you can resume eating apples the next day, other times it'll be a forever or long time thing and now you can no longer eat apples. Deciding if you want unknown or idiopathic causes for your character's reactions but you could also specify exactly what (if he knows) he is allergic too.

I know some people (me) sometimes scar up when it comes to certain allergic reactions. That might be something to throw in as a lot of reactions even chronic ones tend to not show physically once you treat them. They can scar for a number of reasons as just from constant itching, friction, scabbing, blistering or a lot of reactions can get so bad that the surface layers of skin coming off isn't unheard of (I have a few scars from this personally). Sometimes the skin may harden around the area or gets tough, or sometimes there is discoloration too.

Also another thing I would show is even though he has remedies that treat him temporarily, a lot of times no matter how good your treatment regimen is every so often you'll have that break through reaction. These (in my experience) are usually the worst because if you don't have an emergency medication you can take them you just have to ride it out and hope the meds in your system do their job. This might be something that could happen even once he becomes a paladin and goes to find his patron god.

Another thing to research would be the effect of culture and religion when it comes to disabilities and the treatment of those people. In the Tolkien setting this would still apply as they have culture and religion etc. It already sounds like you have that part worked out but too much research never hurt anybody.

I really like how they both work together to get rid of the stigmatism at the end though. Especially for the character and the other characters in the story, it's always so lovely to see a change for the better like that! Happy writing!

~ Mod Virus 🌸

[tj-crochets]

Crafting update! I sewed, like, most of an orange yesterday and only had like...moderate muscle spasms from being in my craft room (it's the hottest part of the house). Also, updates about that whole ER visit on Monday below the read more if anyone is curious (I'm okay)

ER visit went really well, doc was great, very familiar with POTS, noticed that I'm on the medications used for treating Addison's (hydrocortisone and fludrocortisone) and asked if I had adrenal insufficiency. When I said "I have salt wasting and a family history of Addison's, but officially, no" he said "oh your test results are on the low side of normal but still technically in the range of normal?" and like yes exactly. I also got to practice some of the scripts I'd come up with for emergency doctor visits but rarely have the chance to use, such as: 1. I have a tentative diagnosis of MCAS, but have been unable to get the blood test mid-allergic reaction because my primary allergy symptom is uncontrollable vomiting (especially if I say this after the whole "salt wasting" part every single doc I've said it to is like "yep understandable why that wouldn't work") 2. I have been tested for pheochromocytomas multiple times and do not have them (ERs and urgent cares freak me out, so my blood pressure gets high, and high bp + high heart rate + adrenal weirdness = check for pheochromocytomas (in my experience). It means they don't try to test me for one at the urgent care/ER/new endocrinologist)(pheochromocytomas are tumors on the adrenal glands) 3. I have had POTS for over a decade, and in that time period have had several echocardiograms, EKGs, and two holter monitors, one for a month, one for a week, and in all that time they were only ever able to detect a single skipped beat. It was a Wenkebach Block (tells the docs that I have been repeatedly tested and that I do not ever have arrhythmia. Wenkebach Blocks are also called something else but winky-bock-block is fun to say so I will remember it correctly and not mess up, and the doc did know exactly what I meant. It's a super suuuuuper minor kind of block, not even really bad enough to be considered an issue) 4. The triage nurse asked if I'd ever been given medications to slow my heart rate, and I said "my doctors had me try beta blockers once, but it tanked my heart rate to the low 80s/40s, so they did not have me try it again" 5. The doc did ask if I had a cardiologist (a reasonable question) and I had to say "I have had multiple cardiologists, one in [network of hospital], one in [competing network more common close to where I live], and both did some testing and then said there's nothing physically wrong with my heart itself, that there's nothing they can do to help me and that I don't need to keep seeing a cardiologist" 4+5 were not ones I'd pre-planned but I will definitely try to remember to bring them up next time. I also brought a bag with my purse, evening meds, water, a gatorade, and a snack in it, and I remembered to ask before taking my meds or eating or drinking anything but water, which I think they appreciated and made me feel like I was getting a good grade in hospital, something both normal to want and possible to achieve lol This visit also confirmed that what I call the "ER express pass" is as true in Tennessee as it was in California, and if you go to the ER with heart symptoms and tachycardia you will get an EKG so fast and will be in a room asap. It was my first time getting the triage-room-EKG with my mom there and my mom was very surprised the nurse just lifted up my shirt without a word to place the EKG stickers, but at the front desk I'd said "my endocrinologist said to go to the ER for high resting heart rate and narrow pulse pressure" and I think they correctly inferred I'd had EKGs before lol I also kinda got the impression it's maybe even weirder than I thought to have this much tachycardia without any arrhythmia at all? Also!! They brought the x-ray machine for my chest x-ray to me I didn't have to go get one that's so cool!!! And they gave me a chest x-ray for heart problems (CA docs didn't do that at the ER last time I went) and they tested my pulse at my wrists and ankles, not just my neck