#Driving with seizure disorder sucks

[grimm-and-guests]

Craving factory work but the body is too broken to do that kind of work.

We've been wearing our old work boots lately because our other shoes are wearing out and it's been snowy, but I always feel so good lacing them up.

I miss spending 12 hours a day running between my machine, my scale, my packing area, and the pallet, then back to my machine for the next stack of product.

I miss being functionally alone because even though the next station is 5 feet away, the machinery is too loud to hear without shouting(reserved for emergencies).

I started singing songs we'd learned at summer camp, initially too keep our thoughts from wandering (This was the beginning of a year+ long major depressive episode, things were Not Good for a while). Eventually I was doing it to try and block out the pain of making my body do things it shouldn't.

The work felt good. I loved counting up how many thousands of pounds of plastic I'd had in my hands that day.

I even miss when the machines malfunctioned. I miss my ancient bastard IFB line that was supposed to have been retired long before I hired in because it wouldn't cooperate with the newer machine. It shocked me more than any other machine in the building. Halfway through a pallet we'd have to reset the entire line (like 5 big mechanical parts), I spent so much time pulling sheet plastic from 7 stories up, being crammed down in spaces other people couldn't fit to maintenance that I was allowed to. I even miss working machines I used to be kind of afraid of.

I did get a break every 2 hours, and my co-workers were pretty cool when I talked to them. A lot of folks like me, living out in the middle of nowhere and commuting an hour to one of two cities for work.

I would still be there if I hadn't started passing out between stations. Chronic illness fucking sucks. I wanna work but there is nothing I can do right now because of my health. We run a small business but our husband is mostly taking care of it while I try not to hurt myself by breathing wrong. I do ferry things to the post office, but I'm not even showed to drive right now.

But!

After 15 months of deep, agonizing depression and the urges that come with it; after the loss of control in my life triggered my eating disorder to come back in such a strong way, and switching our meds up so many times until we had a seizure, I finally got on a new antidepressant and testosterone and as long as I remember to take everything consistently I've been feeling pretty good.

[closetdbisexual]

disability pride month in 3 days remember physically disabled people and people with mental disabilities (not just disorders) and also remember to tag gifs to protect people from seizures and also take care of your friends with chronic pain or sickness ... and wear a mask and look up what you can do to help people in your area locally 👍 even if its just signing a petition to get a wheelchair ramp at your movie theater or its you picking up groceries for someone who cant drive on their own or its you going with someone to a doctors visit to help advocate for them👍 and if you cant do those things promote people online when you see them cause the worst that can happen is you tried to be a good person and ended up donating to a scammer <- which still sucks . but hey your intentions were good !yayy

[moonlight-at-dawn]

I get so pissed off whenever I read a "But there ARE lots of people who misuse handicap placards." bullshit response to someone mentioning not to make assumptions about whether someone is 'disabled enough' to use one. Clearly none of you fuckers who say this shit know what makes a person eligible for a placard!!!

I'm going to directly copy-paste the eligibility list from WA state. I'm fairly certain it's pretty standard across the board in the US, as it was pretty much the same in AZ, and that's a significant difference in policy between those states.

You may receive disabled parking privileges if you have a disability that meets at least one of the following criteria:

-You can't walk 200 feet without stopping to rest. -Your ability to walk is severely limited due to an arthritic, neurological, or orthopedic condition. -You can't walk without the use of a brace, cane, prosthetic device, another assistive device, or assistance from another person. -You can't walk and use a wheelchair to get around. -You're legally blind and have limited mobility. -You use portable oxygen. -You're restricted by lung disease to an extent that forced expiratory respiratory volume measured by spirometry is less than 1 liter/second or the arterial oxygen tension is less than 60 mm/hg on room air at rest. -You're impaired by cardiovascular disease or a cardiac condition and your functional limitations are classified as Class III or IV under standards accepted by the American Heart Association. -You have a disability caused by an acute sensitivity to automobile emissions which limits or impairs your ability to walk. Your healthcare provider must document that the disability is comparable in severity to the others listed above. -You have acute sensitivity to light associated with a form of porphyria that would significantly benefit from a decrease in exposure to light. Porphyria refers to a group of inheritable metabolic disorders in which exposure to light can result in burning, blistering, swelling, and scarring of the skin.

I was in AZ when I was mostly using a rollator to get around, and I got a temp (6mo) placard. The process involved getting your doctor to fill out forms then waiting in the DMV to turn in those forms. Does that sound like a fun fucking process? Unless you're rich, you aren't getting a doctor to do extra paperwork unless you really need it, and you have to be a special kind of desperate to willingly subject yourself to the DMV just for better parking if you don't need it!!!!

Yeah, there ARE some people who use a family members placard even when the person isn't in the car. But YOU'LL NEVER FUCKING KNOW ON SIGHT. I could usually drive just fine, it sucked because I was in agony, but I wasn't in more pain as a driver than as a passenger, it was just a matter of when it was so bad as to be unsafe for me to drive.

I didn't renew my placard once I was able to move on from rollator to cane, but as per the above, I absolutely COULD have. I didn't, though, because I had also just moved and I didn't know if the doctor would force me into physical therapy I couldn't afford at the time in order to or instead of issuing the placard. There are barriers in the culture of the system that prevent us from seeking the help we're entitled to.

And yes, knowing I would have to walk far in a parking lot prevented me from doing many things during that period of my recovery. I should have felt comfortable seeking the aid available to me, but I did not. It may well have been in my head, they could've issued it no problem, but the whole culture around whether or not someone 'deserves' to use a handicap placard made me too anxious to seek it.

In AZ, I'd learned that some people get a placard during the hot months, because the extreme temperatures will trigger a seizure, so they need to be able to get from car to building quickly. How would someone know by looking at this person that they're absolutely 'disabled enough' to use the placard. All you see is a 'healthy' person walking with no issues. What you don't realize is there is 'no issue' because they used the placard!!!!!! It's working as intended!!!!! Fuck offffff, leave people alone, you don't know what's going on, and you AREN'T FUCKING ENTITLED TO KNOW!!!!

[axagar]

the person who is my best friend and was fp has her bff already so i will always be on the back burner and i feel like trash. her bf is also such a dick. maybe it’s my hatred for men but he’s so condescending and just a know it all. like bro. shut up?? i don’t know. maybe i’ve hit the fp point where i’m starting to realize the flaws. it just feels like she doesn’t want me around when we actually hang out. i also notice she’s constantly texting someone when i’m there and i’m pretty sure it’s her actual bff. the last time i was there, they were just on their phones the whole time. yes, the power had gone out for 24 hours and they were able to use their phones again. but fuck dude. i felt like the elephant in the room. i upset them and their kids because i was upset so i feel like the biggest pos for even being upset in the first place. i should’ve just gone home but i still would’ve been a pos. they also live bout two hours from me and that’s a long trip home bc i’m just a bitch, ya know? so i sucked it up and ruined everyone’s day still in the process. i just don’t know what to do. besides my ex who i am completely obsessed with and still in love with, she’s the only person i talk to. and i feel like i’m nothing to her. i’ll never be her best friend, even if she’s mine. it radiates every relationship in my life. i will never be someone’s favorite or their number one. everyone already has a best friend or just their significant other. some have their parents, i was always the worst child and the disappointment to my mother so that’s out. i was my father’s favorite but he passed when i was six. i just want to be someone’s number one. i want that unconditional love. i want to be the person someone wants to tell about everything, all the good and the bad. i want their first thought to be “oooh i gotta tell alice about this”. and i’m not. i know people say you have to reach out to people, don’t always expect them to reach out to you. after not being able to drive for two years, i can finally see my friends, since none of them wanted to hang when i couldn’t drive for two years. i’ve seen all of them, most of them multiple times. all because i initiated it. if i don’t ask people to hang out, they don’t talk to me. if i don’t initiate every conversation, it doesn’t happen. except for one person. my ex girlfriend who i am completely in love with and obsessed with. i bought my own christmas gifts this year for my mother to wrap and give to me. the only other person who got me anything was my ex girlfriend. i’ll never be her number one bc of her daughter, but obviously that’s understandable. every time i feel like i’m losing someone, it always comes back to her. she’s the only person who’s truly made me comfortable. sitting here alone in the apartment where i live by myself, im not comfortable. but if she’s here, i’m at peace. she feels like home. i just wish she wanted me like i want her. she told me she loves me still and pretty much that she’d be with me besides the fact she knows how easily she switches and how easily she could hurt me. so she doesn’t want to put me through it again. so we stay friends and i at least get my safe person, even if it’s only when she has time. at least she calls me first. i just want to be able to keep someone in my life other than her. why doesn’t anyone love me like that? no one in my fucking family, birth family or adopted family, want anything to do with me. everyone around me makes me feel like i’m just their pity party. oh the poor girl with the seizure disorder and no friends or family. it’s the look on peoples faces when they talk to me or just the way they don’t talk to me. if i go to smoke with my neighbors, we smoke and they play on their phones or the game. we don’t talk. it’s like people can’t stand me if i open my mouth. i don’t like social media besides tumblr, and i feel rude sitting on my phone when i’m with people, so i don’t. i just sit there, quiet and uncomfortable, feeling like no one wants me there, and once again, like i am the elephant in the room.

i stg if someone hugged me right now, i’d just break and shatter into a million pieces. and then i’d crawl out of my skin for the simple fact someone touched me and was in my bubble.

i just want to be able to be happy being completely alone. but my heart longs for her. every person that makes me feel lonely is just another thing making me miss her more.

[chaotic-archaeologist]

Do you have tips for learning to accept a new(ish) disability? I was diagnosed with epilepsy in January and it seemed to be under control but it's gotten worse in the past few months (despite upping the dose of my meds). Not being allowed to drive for long (and unpredictable) lengths of time affects where I can live and limits what archaeology jobs I can get and it's really making me feel a loss of agency.

Hey there, dirtling. Accepting a disability is a lot like a grieving process. You are coming to terms with a new reality that is a lot more limited than what you imagined for yourself, and that sucks.

I wish so badly that I had a piece of magic advice that could make this all easier for you, but the reality is that the only things that will help are processing and time. If you're not already, I would recommend seeing a therapist who can help you with the processing part. There may even be therapists who specialize in working with people with disabilities.

Additionally, I would suggest joining the Disabled Archaeologists Network, if you haven't already. It may not seem like it, but there's a whole community of disabled archaeologists who might be able to help you adapt to your new circumstances and find job opportunities.

Finally, I just want to bring your attention to Like Real People Do by @xiaq. Representation is important, and it was incredibly healing for me personally to get to read a book with a disabled character (who has a seizure disorder) learning how to navigate his life with his disability and finding someone who loves him along the way. The portrayal of Eli is incredibly humanizing, and it reminded me as a disabled person, that that's possible for me too.

-Reid

[chronically-bailey]

Hey everyone! Long time no post!

So we did find the gene causing my symptoms, its the ADCY5 gene on the 3q21 chromosome. It causes dyskinesia, dystonia, focal onset aware seizures, facial myokymia, and myoclonus, along with other symptoms that may or may not be associated (more research is needed). Essentially, the ADCY5 gene is responsible for turning ATP (adenosine triphosphate) the energy carrying cells to improperly convert it into CAMP (Cyclic adenosine monophosphate) the signals sent to your cells, causing my cells to receive those signals when not needed or to not receive the signals when needed.

It's both good news and bad news,

Good news is we finally know what it is and why my symptoms have been happening.

Bad news is that it's extremely rare, less than 400 people in the world have been accurately diagnosed with this disorder. So there is little research, no prognosis for the future and how that looks, and no set treatment plans. It's basically "fuck around and find out" for all of it.

I don't know if I'll be able to drive, if my symptoms will improve, stay the same, or get worse. It sucks, but it's all they've got.

They (my Dr's) are sending my to see a geneticist at the University of Washington in Seattle (luckily only 45 minutes to an hour away from my house) to see a doctor that specializes in this disorder to see if she can help with anything.

I'll keep you all updated,

Love y'all! ❤️

[lovely-necromancy]

A Cure for Insomnia CH.5

A scream shocks you out of your fuzzy thoughts. You look around and notice Connor sitting alert and looking like he wants to run down the hallway this very instant.

“Connor?” the head snaps to you immediately and before you can even question his presence in your home he jumps up and barks then walks in circles near the door.

Great a dog who has no sense of horror movie tropes. Since the scream did come from inside your house you should go find the person who made it and see what's wrong. Also maybe get clarification on why they're in your home. You aren't dead and are still in the same clothes so you figure you're alright around them. You follow Connor to where Toby is, in your kitchen staring out the window standing at a very odd angle. Like he caught himself before he fell backwards but hadn't bothered to get up.

“What's up....oh.” is all you can say as you see Chonk's head whip towards you and Connor before he books it for the tree line. Damn that fat raccoon can run fast, good to know if he ever wants to chase you down in the future. Which he might if you don't leave his slice of pizza out today.

“'oh' 'oh', that's all yo-you've got to say about a giant fuck-ing ra-mrrow- raccoon!?!” maybe thinking this guy was composed and unphased was a misconception, if seeing Chonk has put his world views in question.

“I mean he probably just eats a lot of pizza.” to put it simply you never gave much thought to the fat little trash thief, he was just fat and he existed. Visiting your home for the slice he deemed his every other week. Probably had other homes in Kepler he terrorized for the same reasons. God knows Leo would never put up with a raccoon trashing his store for his pizza. Or even his home for that matter.

“He's nearly half the size of Connor!” looking down towards Connor you tilt your head.

“Are we talking about with his legs or just his torso?” you could maybe see the size comparison with the dog's body but with his height it was a different matter all together.

Toby rolls his eyes before going and sitting down at the small breakfast table where he seemed to have found your fidget cube and had been well fidgeting with it. You take the seat opposite of him, it's weird having a guest over especially when you didn't invite them in. Well now that removes the chances of him being a vampire you suppose.

Perfect not a kidnapper, nor a vampire, and he's helped you out twice now. The two of you might well be on your way to becoming best friends. That is if he could get past this episode of yours.

“I still don't know what happened last night, but I'm done with the freak out.” you say as you idly pet Connor.

“...What?” he's squinting at you trying to get a read on how anyone bounces back from something like that so calmly in a matter of hours. Especially when he'd been checking up on you and Connor only to see you still staring off into space.

“Oh, uh... I have Autism. Isn't good for much but helps me rationalize events quicker and move past emotional and mental breakdowns pretty quick too.”

“Is that an Autism thing?” you shrug at his question as he jerks his shoulders forwards a few times.

“Probably more of a me thing, but I've read the trait tends to be more common in those of us who are neurodivergent.”

You hear a murmur of telling someone later later. Filing that away to take note of another day you stare at Toby who in turn stares back. This goes on for a bit, you couldn't even classify it as a staring contest since you are both still blinking occasionally. You aren't really sure if you should say 'thank you' first and then ask the man what he's doing in your home or wait for him to break the silence. But as you stare at Toby, into his eyes, you get the feeling this man is more of a zombie than anything else. The type to drag along and go at a snails pace rather than get into the messy bits in one go...ironic choice for comparison.

“Thank you for driving me home...but why are you still here?” you hear a huff of laughter?

“You weren't really in a position...” knuckles pop “to be left alone. What if you got back into your car again?” his eyes cut and there's a bit of bite to his words...it wasn't directed towards you, you can feel that much.

“Fair enough.” you glance at the stove and see the clock shine a little before six. “Would you like some breakfast” his neck snaps to the left triggering your own to snap as well, “or a ride home?” you finish asking.

“Can you make something for Connor too? Don't trust you behind the wheel yet.”

“Oh sure! What does he normally eat?” Perking up at the thought of the dog being off duty, that means actual pets!

“He-mrrow- normally gets oatmeal with some fruit or veg and anything raw I can find.” He finishes with a whistle for Connor's attention, and then a pointed finger flipping down in front of him. The dog trots over and sits down, while Toby takes off the vest you look through your cupboards to find the rolled oats you'd gotten as incentive to eat in the mornings before realizing you only liked them on certain days.

“So what does Tobias normally eat?” you call out as you look for some honey you know you threw in the cupboards.

“Anything really. I don't do slimy textures or anything watery.”

“Watery? Like soups?” Found a can of pumpkin, it's still in date too, perfect.

“Watery like...when you put too much water in oatmeal.” He nods when you silently show him the can of pumpkin asking if that'd be fine for his boy, who is sitting down drooling from his smiling face as Toby tussles his ears.

“Ahhh, thin watery got it.” You hear movement and a few grunts from Toby as you assume he tics, trying to ignore them so they won't trigger your own you look through the fridge. You suddenly take a deep breath, while looking for a meat in your fridge, and let out a shrill trill. Kinda sounds like a Togepi's cry from the cartoon. Shaking your head your eyes catch the eggs and turkey sausages you have.

“Will turkey sausage and eggs work for you two?”

“Never had turkey sausage but it should be fine.” he's leaning forward resting his head in his arms on the table as Connor lays by his bouncing feet.

You set the eye to medium heat and put the sausages on first, leaving three out for Connor. He is a big dog after all. You turned your focus on preparing Connor's oatmeal while the sausages cooked. It was kinda nice having company over even though the circumstances weren't the best. Your neck jerks to the side three times before pulling back. There's more on the way your neck didn't crack and your body doesn't let up until it does.

“So what disorder do you have?” You turn to give Toby a confused look you hope he can read through your mask.

“...I have a few..you want the list?”

“No, the tics. Lower level Tourettes or what?”

“Oh, they stem from my” head jerking twice to the side before cracking “there we go.” “Sorry, they stem from my Autism, at least that's the best I can gather without seeing a specialist. Virginia doctors suck big time.”

“Tell me about it.” that perks you right up, you knew you caught a transatlantic accent, it's pretty much the lack of an accent that gives Virginians away so easily. You already have two guesses on where Toby came from.

“I knew it, you're from Halifax aren't you?!” Since you've turned around to face him you see the exact moment his face drops. Eyes shocked wide open.

“How...did”

“Oh it's easy once you know what to listen for, in fact it was the total lack of any distinguishing accent or use of slang that gave you a way. A lot of people don't notice what they take from their communities linguistically speaking. And for us Virginians it's what we don't take. It's such a bland neutral midpoint it's why it had been so coveted during the radio era and while we might've lost the in-fluctuations as time went by, no longer needing them for our voices to be heard over various frequencies....am I talking too much you can tell me to shut up, really you won't hurt my feelings.” you give Toby a minute to process everything you've just said.

“Special interest?”

“mmm, more a...an interesting factoid.” you hope he registers your smile, hell you hope he doesn't think you're weird. You know how much you can be sometimes, especially when you info dump or overshare information. He manages to nod along with you before finding his voice again.

“Lemme guess NOVA?”

“Pfft, seriously.” you really need him to at least register the disgust on your face if he hasn't been able to read you before, “Listen the Beach isn't much better but I'd probably off myself if I was from NOVA.”

“A public service really.”

You both stare at each other before breaking into a fit of laughter. It's nothing huge but it does seem to put Toby more at ease you noticed. In the time it took you to make breakfast for all three of you you've found out a little bit more about Toby.

He's uncomfortable talking about his hometown, at least you assume, so instead he mentions that he recently came to town with his friends, Brian and Tim. Talks mostly about Connor and you learn he's to help alert Toby of his Tourettes when driving and he can even detect seizures with Brian. That's amazing, service dogs have sure come a long way! And you love hearing what a silly puppy Connor is off duty, it makes you smile. Toby in turn asks about you, and you are such a well of stories. You tell him about your family back on the coast, about your recent move to Kepler, give him a little info on Kepler to help him adjust to his stay, and even get on the topic of your extensive work with animals.

“Sounds like you were working towards being a trainer, why didn't you?”

Making a sound that sort of sounds like a jumbled 'I dunno', “Sort of don't like people that much. Dogs are fine, less complex and less likely to complain when you do something in a different way. But a trainer doesn't train the dog, they train the people.” You're placing Connor's food in front of him as he sits patiently.

It's quiet for a moment as you place a plate in front of Toby and set yours down as well. Not tense just quiet, it's very calming really. Until Toby ruins it.

“Thanks Connor.”

Like he's a voice actor who is over exaggerating the sound effects of a dog munching away at their bowl. Connor inhales harshly before diving head first into the bowl. The dog is ferociously tearing into his breakfast and you can't help the laughter that spills from you at his enthusiasm. Hands coming up near your face and shaking as you shift from foot to foot. It's a happy stim, cute dogs are of course a trigger, someone can complain later you're happy to see a happy excited pup any day.

Taking your seat and turning your attention to your food, you see Toby hasn't touched his own. He's staring at the plate with a furrowed brow, he glances up to you as you remove your mask. You feel a bit vulnerable to be honest.

“Oh is something wrong? Do you want something else?”  He's a guest who's helped you twice now the least you can do is make sure he leaves your home full.

It takes a moment but he gathers his thoughts to explain, “I have a scar...it's pretty bad.” he looks away from you.

You tilt your head not quiet understanding what he means, “Cool story, do you want me to look away?”

He stalls at this, you just keep throwing him for a loop since you met the other day. While he thinks on it you scoop some of your eggs on your spoon and into your mouth. Perfect texture and prefect flavor, today will be good.

Toby seems to have made his decision and without any show he takes his mask off to begin eating. You can see the scar he was talking about, and while the currently red and bleeding'?!' scar on the left corner of his mouth was bad it wasn't much compared to the gaping hole further up that side on his cheek. You can clearly see the even whiter, how this boy is so pale is beyond you, skin around the edges suggesting the wound was older and had started to heal at some point. But you could see most of the teeth on the left side of his mouth. You've never seen these teeth while they were still in the head. A skull or 3D model yea. But never a living breathing person's head. It's fascinating really, you hadn't even noticed that you finished your breakfast as you watched him eat, you were so enthralled.

“You know your lip's bleeding right?” eyes never leaving the boy's teeth as you see them grind down the eggs into the tiniest particles. Neat!

“Rwhatf?” the way he can talk with his mouth full without spilling it from the hole is fucking magic and you won't hear another word on it.

He takes a drink of water, again it doesn't spill. Then you notice the slight tilt of his head...oh he's had practice doing this. Impressive honestly.

“That's what you choose to comment on?” his eyes narrow at you're still gawking form.

“I'm sorry I've just never seen those type of teeth still in head, normally muscle and...and skin cover them. So this is really cool to see them in action!” gosh you're so damn weird. By his stupefied expression Toby seems to think so too.

“Plus the wound looks healed but the lips look fresh,” you get up and grab a few paper towels bringing them over to offer to Toby, “Not to mention it's bleeding and you haven't once wiped it.”

He doesn't reply as he takes the napkins from you and dabs at his scarred lip, looking back and seeing blood just as you said. He was right when he thought he'd been biting himself a few hours ago. He'd totally forgotten to check after getting you home.

“Well I don't feel it so I didn't know actually.” he just resumes eating as if this conversation didn't happen.

“Didn't, didn't, didn't” you get stuck in a loop for a bit before breaking out “you didn't feel it? What do you have congenital insensitivity to pain?” you ask incredulously.

“I haven't heard it called that since I got diagnosed.” still eating he looks at you through his long eyelashes.

This dude could not be a real person. You had to have been imagining your dream friend. Everything you learned about Toby was more interesting than the last...at least for you it was.

“Medical history podcasts are interesting.” you shrug, “should I get the first aid kit?” at his shrug you get up and go to your bathroom to retrieve the kit.

Coming back into the kitchen you catch Toby lowering your plates for Connor to lick clean. You don't see a problem with it but you will wash everything twice since the pup has slobbered on nearly everything anyway. When you don't say anything he lets Connor continue before placing the dishes in your sink.

“Such a big help” you say patting Connor's head as you pass him, “Yea I really am” Toby says as he sits back down. Propping his arm up on the table to rest his head on his knuckles, it was such a fluid and casual motion. As if he's sat at this table everyday of his life, like this was his home and you were his guest. Tied in with how comfy he is man spreading at your kitchen table you'd say he made himself at home just fine.

You smile and scoot your chair next to him first aid kit in between you on the table. Toby looks between you and the kit before leaning in closer for you to work. Grabbing the antiseptic cleaning towels you go to wipe Toby's lip when he flinches away. Probably faking to see your reaction.

“Oh, fuck off you have CIPA.” you laugh grabbing his chin to keep him in place. He rolls his eyes “And you're weird.” The vibrations feel weird against your fingers.

“I know.” you continue cleaning the small bite mark? Well he does have CIPA he wouldn't be able to feel the pain if he was gnawing at his lips. Would he be able to taste the metallic tang of his blood or were taste buds effected by the disorder too? You might need to do another deep dive on this, it just became relevant. Maybe an anxious tic, judging from the larger wound it could be possible. Wearing a mask must help to hide it but not not to stop it getting worse if no one can call you out on it.

“That wasn't an insult...” he says making you look up into his eyes as you dry the wound, “I know.” You smile down at him, knowing this time he can see it on your maskless face.

When you finished cleaning his wounded lips, you drove Toby and Connor back to their home. Which turned out to be the RV at the forgotten entrance of the forest. Toby had been a little wary you knew where he was talking about but seemed to shake it off just as quick when you mentioned hiking a lot and using that entrance because it was the closest to you.

He had put Connor's vest back on and hopped in the back with him. You noticed from the review that Connor's full attention was on you.

“This set up let's him focus on the driver, so he'll tell us if something will impede your driving.” Well that explains Brian's position the first time you four met.

Nodding you sync you phone with the car's bluetooth and pass it to Toby with spotify open.

“Rules of the road, passenger picks music.” you say simply when he questioned it.

He quickly clicked your last playlist. Probably either too lazy to find something or trying to get a better read on you. Music says a lot about a person even if not everyone thinks that way. And unfortunately for you this playlist screams mental illness and a need for therapy. But you have folk punk. So who needs therapy when you can just scream cry these lyrics.

Toby doesn't comment on it, either just totally apathetic or maybe he likes it. He's a bit of an enigma, he's open and honest for the most part but saves his opinions unless directly asked.

Even after making it to the RV without incident Toby tries to distract you for a bit and tempt you out of the car with the possibility of playing with Connor. As fun as the idea sounds and as much as you don't want to be rude, you're very tired and drained. Probably more from “hanging out” with Toby this morning than your actual episode last night. Plus you understand Toby's just trying to be nice and maybe ensure your safety.

“Could I maybe rain-check? I'm actually really tired.” you say with your most polite smile, though he can't see it through the mask  you know he sees the crinkle of your eyes.

“Sure, just get home safe.” you feel that's less about you, but you aren't sure what the hanging subject is. So cryptic.

“Yup,” you chirp, “See you later Tobias!” as you start to back out back onto the road you hear Toby say “ Later YN.”

Driving off you can't keep the smile off of your face. Toby's a nice guy, you hope you get to spend more time with him. And this time the thought isn't centered around also hanging out with Connor. Just about enjoying Toby's company.

Getting home and locking your door you strip your jeans and flannel, leaving you only in your muscle tee, and curl up in your unkempt sheets. You'll do laundry later, right now was time for a little nap.

[candidsoup]

Hey I have questions for Autistic tumblr and medical/science tumblr.

My dad is 67. He is almost definitely Autistic but never diagnosed. He has always had sensory sensitivities, particularly with sound, and he has had difficulty with proprioception as long as I can remember. Mostly he has “two left feet,” an “odd gait,” and also tends to think he takes up more space than he does. Like he used to wait for someone to leave a room or say he needed more space to walk through somewhere and my mom and I would be there like … “but you have room…”

He has anxiety. And he has a driving phobia. And part of that is thinking like, a car that’s pulling up to a stop sign and stopping, just pulling up to stop and be able to see in the intersection, is going to speed out and hit him. Again, this thing of thinking he/his car takes up more space than it does, thinking things are closer to him than they are or are imminently moving closer. I promise this info is relevant..

He very recently and quite rapidly has developed some serious issues that are affecting his mobility, and are kinda dangerous. So he gets startled by an unexpected sound, or suddenly seeing something in the corner of his vision, and again, thinking it’s closer to him than it is and going to hit him or something. And first he started like, kind of throwing his hands forward / pitching forward for a second when getting startled like this. And then it developed into him falling backward on his butt as a common startle reaction. So far causes of this are unclear, like anxiety plays a huge role but there are times he’s fallen without any particular startle stimulus that he could recall, and it seems like these involuntary movements that are partially neurological, but no medical consensus yet. He’s trying to get in with the Mayo Clinic because of how weird and undiagnosable this has been. Every major clinic that handles movement disorders or medical mystery cases like this has long wait times and meanwhile he’s living in a totally wheelchair inaccessible 2 story house. I’ve been coming over and trying to help. He literally fell down the stairs last week after never having fallen on the stairs; it’s like the way he falls and what causes him to is increasing in number. whenever he falls in a place or room it increases his phobia of falling there again and increases his anxiety. So then he tends to fall there more. Since the stairs, someone walks behind him up the stairs to spot him. He says he’s fine walking down the stairs, but I’m still a little worried about that as he keeps being like “oh I don’t need help on THAT”… until he does. He’s super lucky when he fell down the stairs, he fell backwards and just slid down the carpet runner, and stopped just short before hitting his head at the bottom. Like inches away. The house floor plan is such that it’s kinda open between upstairs and downstairs… there’s a railing upstairs of a decent but not HIIGH height, and he’s tall. If he happened to have his back to the railing and fell backwards there’s honestly a chance of him falling down from upstairs which could be paralyzing or fatal? Maybe I’m overestimating the height but it wouldn’t be good. There’s stuff against this railing, so he doesn’t have a tendency to turn his back to it or be right next to it, but it’s really scary to me That it could happen. They have a home health care worker coming to assess the house and my dad tomorrow and so soon there will be someone else around more often to help him. But each moment that my parents don’t have answers or professional help they’re just freaking out.

He’s using canes and a walker but then like he went to physical therapy and they couldn’t find any muscle degeneration or physical issues. He also has a small amount of cerebellar thinning or atrophy, one of the recent findings from all the tests he’s getting done, BUT his doctor said that it’s a normal amount for his age. That just happens as you get older. Inconclusive if it’s contributing to anything. I did look up cerebellar ataxia but there’s a description of someone stumbling and kinda being shaky all the time, walking in a way that my dad does not, and talking with slurred speech, it didn’t fit with what he’s experiencing.

He’s also had an EEG testing for seizure conditions and that was all clear. His falls really don’t present anything like seizures anyway. But then his current neurologist thinks he could be having seizures but the clonnopin that he takes for anxiety is messing up the test results. At the same time the neurologist sucks and is against the majority of psychiatric medications so 🤷‍♂️

While he waits on being able to get in to Mayo Clinic or possibly MUSC, and waits on being able to see a new neurologist, I’m sitting here thinking…. if I had to guess I would say my dad has been in a state of Autistic burnout due to the pandemic and having retired and feeling like he’s stuck at home, and also my mom has serious anxiety as well and home life is probably quite stifling and not great sensory wise. They just don’t play off each other well, exactly. I was wondering if.. autistic burnout combined possibly with either some kinda physical issue OR even just aging can cause this kind of issue. Like if he’s basically having stronger responses to sensory input than normal and is just burnt out of being able to deal with it like normally. I’ve thought about this but his reactions are so extreme that I don’t know if that alone could cause this? I need to know if anyone out there has experienced this or knew someone who did. Or if you’ve got any studies to throw my way. Literally anything. Please and thank you 🙏

[onisiondrama]

Wow ok lots of new videos today. He’s still uploading. I’ll do the summaries in parts.

PART 1 - Videos #0 - #2

don’t watch

- Attempt at comedic video game commentary

hey

- Everyone told him not to respond to recent drama. He used to always respond. Taking other people’s advice has been the worst for him. - He talked to Tobuscus about how he was accused of a horrible crime. Tobuscus went silent because everyone told him to and it didn’t go well for him. He was canceled until Greg talked to him and told him to defend himself. He did and he prevailed. - If you don’t hear both sides of a story you shouldn’t have an opinion. - He thinks he broke records about how many people hate him on Youtube. - He stayed silent because people he cares about told him to, but things are getting worse so it’s time he tells us what happened in the coming videos. - Shiloh: He called the police on her when she said she was going to kill herself and make it look like he did it. This is the second time he called the police on her. First time she said he was being abusive. He says he wanted to be alone and locked himself in a room and she started body slamming herself against the door. He says this is all documented in his old videos, Shiloh body slamming the door and him calling the cops to prove he’s not abusive. - Another ex of Shiloh’s made a video and said she did the same thing to him, but he ended up going to jail. Allegedly when he went in front of a judge they found a text from Shiloh talking about how she plotted to pin someone down for abuse. -He said it’s not his responsibility to look all this up. It’s up to us to look at all the videos and confirm it ourselves. (lol what ??) Says he doesn’t want to make a docuseries about his exes because he dumped them for a reason. - Shiloh started a gofundme. (he doesn’t finish this thought) - She’s been diagnosed with severe stuff. Guesses she has BPD or is a pathological liar. Says she was taken into custody by the police and put in a medical facility and the officer told him to escape because evicting her would take too long. He went to LA. While he was going she called and asked where he was. She said an alleged gang she was in was sending people after him. He was scared and made youtube videos about it. - Says she lied about someone that was training her knocking her out and that person said it didn’t happen. Says she told him she has a split personality named Aliana. Aliana told him she existed to protect him. - Says she told him they were soulmates and they were chosen for something supernatural. He fell for it. - He left Skye. She originally agreed to $12,000 a year to help her survive. Six months before she said she wanted half of his stuff if they divorce and he said that’s why he wanted a prenup. When he asked her for one she cried so he didn’t go through with it. Says now we know why she cried. - She pursued him in court. She said she was under duress when the original agreement was made but he says that made no sense because she made her own terms. She then pursued him for $250,000 and he settled for $90,000 because he was afraid she was going to try to claim his channels. That sucks because they both spent tens of thousands on lawyers when they could have handle it out of court. She decided to burn that bridge. - He left Skye for Shiloh. He doesn't think he lied about that before, but he doesn’t remember and might have felt differently back then. The biggest reason he left Skye was Shiloh. She made him feel like his life had more meaning and was amazing. He felt intoxicated by her. They had an amazing love life, passionate interactions, she was so talented and funny. Says the next video will be about Shiloh too.

ok

- One of the pathological lies he had to endure during his relationship with Shiloh was she faked an accident the moment they met. She said she was going with another Canadian artist to an event and got into a car accident on their way back. He said he talked about this in his song “Her Lies”, a music video he dedicated to how many times she lied. - Says she cheated on him and got pregnant with someone else’s baby. He found out through Facebook. Says her story was she went back to Canada because she had free medical care there and had a dead 6 week old miscarriage allegedly going on inside her body. He says he said allegedly because he didn’t know what to believe in that relationship. When you find out someone was collecting money from you while cheating on you, what in that relationship was real?  - People don’t remember how Shiloh was because they have short memories. Back in the day his audience begged him to leave her. He left her 7 out of the 8 times they broke up. There was so much instability.  - He says she tried to shame him and manipulate him into dating her again by saying she was going to end her life once after a break up. She walked off with a suitcase and he let her go because he couldn’t stop her. He video taped himself crying when she was gone. He says deep down he thinks he did that because he wanted people to know where he was when she was doing that. He was so overwhelmed emotionally and couldn't do anything but freeze. He says there’s a clip of him crying out there while she walks off. At that point you just want that person to leave you alone. She came back with a little branch on her shoulder. She would do a thing where she would be in a mood and would go somewhere else. Says she told him she tried to hang herself but the branch snapped. He said he said he was glad she was alive, but there was no rope mark. - When she faked the car accident she used makeup on her forehead. He asked her about it and she said “it hurts so bad” and showed him her forehead, but she didn’t want to see a medical professional. It was magically healed in couple days when he asked about it. He was saying “wow it healed so fast” and didn’t even think he was being lied to. He wasn’t used to being lied to. - Says Skye didn’t lie to him much other than her saying she loved him. He doubts she ever loved him. When you cry when someone asks for a prenup, it says you’re only interested in someone for their assets. A prenup says it’s about love, not about all the stuff we have. Sounds like she was crying about the stuff. Some people perceive it as she was crying because she thought he was doubting the relationship. Says he could see where they are coming from, but that’s not what he was doing. He was disturbed by the crying. Obviously he was right because she tried to take him for a quarter million. Says he wasn’t well off, he was making $12,000, but Youtube is inconsistent so he didn’t want to shell out a lot of cash. Says he might not make enough to keep paying her $6,000 a month. Payed her six years of alimony, so a full grown adult can have financial assistance from him. When it was over she decided to publicly lash out at him. - Shiloh decided to reach out to Kai a couple times. Kai did not appreciate that. - Shiloh said their relationship was like an Adele song, if they split up she would show up at his doorstep, even if he was moved on with another person because that’s how much she loved him. When they would break up or discuss their relationship she would tell him no one will love you as much as I do. - There’s a video circulating around where you can hear him trolling the internet in the background. He was totally shook when this video popped up because he didn’t remember it. They did a prank where he walked in on her in the shower with a go pro. There was another prank where they pretended to go through a drive thru but no one was on the other side of the call. There was one on her channel where he said mean things to her. He says at the time people liked the video because they understood the joke, but now people want to use it as a sign that something crazy was going on. - The only reason she broke up with him was because he looked at hentai and she was a jealous person and it was a threat to her. As a result he got “remember love” tattoo on his wrists. Says we might remember someone asking someone to get a tattoo. Says that was rooted in his subconscious because he did it himself [hold up tattoos], got a tattoo so someone in Canada would take him back. Remember love means to be a good person. - When Shiloh miscarried in Canada, she said she had sepsis, but he questions if she had it because you normally die if you have it.He believed it at the time when she told him. He made a video announcing her sepsis and people yelled at him.  - When she went back she told him she needed rent money until she could get a passport. He talked to her uncle over the phone and he said she was full of it and she didn’t lose her passport. He says he made a sketch about that. - Finds out she’s publicly talking to a guy on facebook and he talked about making love to her and she would says she loved him. He says it’s ironic because he just made a music video about having sex with someone’s girlfriend. Says he was thinking it would be ironic if she was cheating on him while he made the video. Says she liked the video, guesses she was amused by it. She would pick up the money he sent her with the guy she was cheating with. - Says he heard the baby she had with this guy “didn’t go on living”. He says doesn’t know what happened, but someone told him it was a stillborn or SIDS. Says no one should be making video titles or making money off that. Says if she went through that he’s sorry. - Says Shiloh walked down the road and layed on the cement. The fire department dropped her off at his house. He says the fire department was weirded out by her pretending to be whatever on the side of the road. -She fake a seizure and memory loss and her uncle laughed at him for thinking it was real. She faked going back in time, reverting her age. He says it was her idea to post the seizure video because he told her either he can work on another video that night or he couple post it as education on mental disorders. He didn’t take it too seriously as a medical emergency because she already had previous episodes. Says she magically popped up and snapped out of it one time during one of these episodes when he said he was going to call an ambulance. - He was on the phone with his mom and aunt when she threatened to end her life and made it look like he did it. He called the police and filmed it. Says she once wrapped her arms around him and told him to hit her. -He giggled nervously and didn’t know what to do. -Said he’ll continue this in the next video.

(Pretty convenient he keeps stopping these videos after he hits the 10 minute mark even though the videos are not distinct different subjects and he’s filming them back to back.)

[devilboyblues]

list of fucking bullshit

ptsd 

eating disorder NOS, with facets of anorexia and orthorexia

panic disorder

fibromyalgia

OCD (primarily about intrusive thoughts and body related compulsions like skin picking but tbh there could be a lot more) 

adhd- hell yeah we love disorders 

auditory processing problems

dyslexia and dyscalculia. meaning i suck at reading and math. there is also dyspraxia and dysgraphia, meaning having a hard time with movement and writing (respectively). i dont have those but fyi for anyone else

BPD? possibly. also i love racist therapists because she said i had this based on being too emotional for being Asian

seizure disorder. sure your brain goes wild randomly and you have to control your whole life around it (including avoiding a lot of meds and driving) but we don’t know why. good luck!

your lungs suck. you dont have allergies but you don’t inhale so good

but you are allergic to mint and bees and insect bites 

bipolar I- so turns out this could actually be the outcome of other stuff but hey! stable mood/sleeping/eating/engagement with things? i dont know her

anemia- OH we gotta take vitamins now

general anxiety disorder. yep you got it

agoraphobia- you know how tumblr constantly tells you to go outside? turns out that sucks

IBS. can’t really tell people about it cuz like. what you gonna say. turns out i gotta sht real bad

insomnia. based my whole job search around finding jobs that don’t have an early start 

vs like multiple undiagnosed disorders. leg doesn’t work and has been tested? well something with the CNS i guess 

[lauraann97]

Thanks For The Memories, Officer!

Thanks For The Memories, Officer!

It’s known that when you have seizures you can’t drive right? But in the State of Michigan once you are 6 months seizure free, you are able to drive again; woohoo!! However, when you do have seizures, you are “technically” supposes to report it or whatever and get your license suspended. I never did that, because it’s a pain in the ass! It’s a huge hassle; plus I just didn’t drive. I knew the…

[actuallylorelaigilmore]

i just need to vent. ranting about the us system for mental health care ahead. i wasn’t going to put it behind a cut, but it got obscenely long.

okay. so anyone who knows me or who follows this blog knows that my brain is pretty broken. it’s creative, and fun, and smart, and all that, but also just suuuuuuuper broken. 

because us healthcare is ALSO broken, i didn’t get my full slate of diagnoses until i was almost thirty. and that was a long, convoluted process that is a whole other story, but what matters at this point is that my fascinating brain is officially comprised of generalized anxiety, bipolar 1 disorder, autism, and adhd (plus i think a few cats in a trenchcoat).

now, if you’re not familiar with all of those disorders, like i wasn’t prior to being diagnosed, you might be surprised to learn that the combination? is INCREDIBLY fun. the stimulants that they often prescribe to those of us with adhd can trigger manic episodes in those of us who are bipolar, which means two parts of my brain are locked in a permanent battle to see which one gets treatment and which one just gets to drive me crazy.

before i won my disability case a few years ago, i didn’t have insurance, and i lived in utah, a state that is super proud to have healthcare for mormons & the wealthy and death for everyone else. while i was there, the battle over utah rejecting aca money just to spite the sick and poor was raging on, and so my mental health care was a free clinic that was prohibited from prescribing the exact medication i needed for the problem i went to them for. 

instead of helping treat my adhd, they gave me my first diagnosis that would eventually be specified as bipolar 1 disorder, and they gave me meds for THAT and told me it would probably help the adhd too. 

it didn’t.

but being medicated for the bipolar disorder was still pretty amazing. the difference between me on meds and me off them isn’t like, institutionalization yet, thank the gods. but it is the difference between feeling sad and then moving on with my day or me standing in one spot sobbing uncontrollably until i nearly pass out because a movie I HAD SEEN BEFORE was sad.

but you know what’s just fabulous about us healthcare? (spoiler alert: the answer is nothing) the care you have access to varies based on where you live!! and because we can all control exactly where we live based on our healthcare needs, that’s just wonderfully designed. really fantastic. 

so when we moved from utah to california, a move that was wanted but also financially necessary, i went from a localized system of university-based insurance to a different plan each time i found myself in a new city. because even if i was only moving a hour away, it put me across the county line, which of course changes your options every. single. time. you move.

and every single time i moved, and got a new insurance plan, i had to find new doctors. which meant waiting while i was transferred to the new plan, then waiting until i could see my new doctor, then waiting to see the specialist approved by my insurance, and none of that included the time it took me to actually contact each of those people, because i have to talk myself through an impending panic attack every time i dial the phone. 

but that’s not even the worst of it. the waiting sucks, the long loooooong gaps in coverage and going without my medication sucks. but the worst of it is not being able to be treated at all.

it’s been more than five years now, since i went to a college counselor who told me they couldn’t help with the focusing problems i was having that were so severe i couldn’t do my class readings. it’s been almost that long since the free clinic promised me that if i just took the anti-seizure medication that they used for bipolar disorder, my adhd symptoms would improve. 

it’s been years since the incredibly kind and knowledgeable psychiatrist in salt lake city explained my four concurrent disorders to me, and then explained why i couldn’t be allowed help for the adhd because it was just too dangerous. 

it’s been more than a year since i went to multiple talk therapy sessions that were required before getting me a prescribing psychiatrist appointment, only to be told when i arrived for that final, promised-land-after-years-in-the-crazy-desert-of-my-brain appointment, that the psychiatrist didn’t feel qualified to work with my multiple conflicting disorders and there was nothing anyone could do for me. i broke down crying in the lobby. i still feel bad for the receptionist who was given the awesome job of telling me that.

i think it’s been about a year that we’ve lived here now, in this NEW california city, where i have ANOTHER primary care provider. this one had trouble communicating with my autistic self at my first appointment, and i might still be there asking her to explain her questions better if my spouse hadn’t been in the room to translate for me. 

my new doctor (the third, or the fifth, or the seventh, at this point, i’ve lost count) will not prescribe mental health medication to me. i have to see a specialist. which i get on principle, it isn’t her expertise and i’m new to the area. but it’s a year later, and i’m still off my meds, and i’m still trying to get back on them, let alone get help FOR THE THING I SOUGHT HELP FOR five years ago.

today my spouse was able to get through to my referred psychiatrist, who i’d been getting the voicemail of with no reply for months now. he isn’t available. the last psychiatrist i was assigned won’t take patients who have the doctor i have as a primary care provider. the one before that wasn’t accepting my insurance--the insurance that assigned them to me. 

so now my insurance will try again, taking whatever next step they’re going to escalate to. if my spouse weren’t making the phone calls for me, i don’t think i would even still be trying at this point, because today’s dead end wasn’t even a surprise. i don’t expect anything else anymore. i’m so far past the point of losing hope, it no longer even hurts. 

this is where i am. something about where i live, or the way the system is set up, or how my brain is busted, makes me impossible to help. 

anyway, i whine a lot on my blog about not being able to focus, about not having the energy to function, about wanting to write or read a book, or make things. i miss knitting. i can’t keep track of the stitches when i try to follow a pattern, so i don’t do it anymore. but it used to be fun.

so i guess the point of this, beyond getting it all out because i feel numb and it’s unsettling and at least rambling my feelings proves that i have them, is that i’m pretty hard on myself, publicly and privately, when i can’t get my brain to work the way i wish it could. it’s a process of deterioration, the more i go without care and the older i get--and that sucks. 

but as hard as it is, it’s not all my fault. the external factors, things i can’t control, about america, about health insurance, about my brain...it hurts even more because i can’t control them, but i should try harder to remember that i can’t. the more frustrated i am, the more i feel like i’m not trying hard enough, and that isn’t true. i’m trying really hard, and i just can’t fix me alone.

i’d like to learn to blame myself a little less for that.

[bipolaronshuffle]

Let’s Start By Saying I Hate My Fucking Mind

So. Hi. It’s your girl here, ready to bare her heart and soul online like a teenager. 

I’m soon-to-be 21, decent-looking with a gorgeous boyfriend and life ain’t all that bad. Well, not until the episodes.

 Yes, friends, The Episodes. Periods of time my mind goes through highs and lows like a Six Flags roller-coaster. Before all else, I must warn you, there is profanity, strong views and long vents afoot. If you struggle with any sort of depressive trigger, please, for the love of God, do not read.

Anyway. As I was saying. The Episodes are certain times of certain days my mind likes to take a stroll down Manic Lane and turn left into Depressive Drive. I have Bipolar II, the one that’s considered ‘less bad’ than Bipolar I. Well, let me tell ya, I still feel pretty fucking crazy. I’m on three types of medication:

1. Risperidone 2. Lamotrigine and 3. Fluoxetine

1. Risperidone 

Risperidone is an atypical antipsychotic. It does exactly what the name says, amongst other things, and is used specifically for people with Bipolar, Schizophrenia and Autism. For those not following, it helps stabilizing your moods and help you think clearly in a pressured situation. And also not fuck out and kill your boyfriend (just kidding... or am I?)

2. Lamotrigine

This little guy is an anticonvulsant. It helps prevent seizures and stabilizes moods, reducing moodswings and helping you think clearly. It’s also used to treat people with Epilepsy, among other things.

3. Fluoxetine

Now, this bad boy is an SSRI. ‘What is an SSRI?’ you might ask. Well, in medical language, it’s a selective serotonin reuptake inhibitor. In normal English, it boosts the serotonin production in your brain to help you feel a little less depressed over your life.

 Now, being on all of these, it’s a mystery how I can still feel like absolute dogshit over the littlest thing. I mean, I’ve got three little happy pills to try and keep my mentality stable enough so I can get through university and my waitressing job without killing anyone or myself.

Too crude?

Anyway, it sucks having to live with a constant reminder that you can snap at anyone, anytime, anywhere with just a normal, mundane but wrong word or action. But it’s even worse if that anyone is mostly the people who care about you. My boyfriend is a soldier, persisting in a relationship with a girl that has her PMS on high the whole fucking month. It’s difficult to control and a pain in the ass to fix the consequences of. One thing about mental disorders - you can’t blame it all on the mental disorder. This is one thing certain people are fond of doing. 

Not me.

I hold myself and my lack of control of my emotions accountable. This is exactly why I can apologize if I had been unreasonable, and it’s unfortunately become a bit of a habit. 

“Sorry, I wasn’t able to reign in my anger. I’ll do better next time.” 

My boyfriend - let’s call him R for now (Any Warm Bodies fans out there?) - being the trooper that he is, usually reassures me that he understands when I have one of those days. Other people might not be too keen on this, though.

I have three close friends - A, K and C, who all accept me for who I am and have made it through plenty of battles by my side, and there is nothing much like the support of girls for fellow girls. K and I have Puppy & Park therapy, A and I go for drives and C is close to campus so I can pop in for a quick Vent & Coffee.

All in all, this doesn’t summarize what life is like - that you’ll get a taste of every time I feel the need to take a metaphorical dump from eating people’s shit the whole day.

Sorry for the visual.

F signing off. x

(haha, f off. Get it?)

[levy-the-b00kw0rm]

the American healthcare system is screwed up

And like.... yeah, that’s common knowledge at this point, isn’t it? But it’s one thing to know that “yeah American is messed up and inconveniences its own people all of the time”.. and it’s another thing to think that “America is messed up and it’s currently inconveniencing me - and my family, indirectly - right this very moment”. 

And yeah that’s kind of selfish and narcissistic, but at the same time can you tell me it isn’t true? 

Can you tell me you wouldn’t be outraged that you’ve been awake for over 48 hours because your pharmacy has a “shortage” of a common sleep medication?

Can you tell me you wouldn’t be furious that you’ve been less energetic, even excluding the sleep issues, because your insurance won’t cover a supplement that’s a common treatment for your energy disorder?

Can you tell me you wouldn’t be laying in bed, crying, because for almost two weeks you’ve been without a medication that relieves your neuropathy, since the insurance company isn’t sure whether or not they’ll continue to cover it?

Can you tell me you wouldn’t be frustrated because you can’t see well, since you don’t have enough money to afford new glasses and you really need a new prescription?

Can you tell me you wouldn’t be afraid because you’ve got epilepsy, but your particular seizures aren’t really life-threatening, and it would cost too much to call an ambulance every time you had one?

Can you tell me you wouldn’t be desperate because you’re completely deaf in one ear and you’re out of batteries for your hearing aid, but you aren’t able to visit the audiologist to get more because you’re trying to balance school and work and a crappy home life already, and there just aren’t enough hours in a day or days in a week?

Can you? Can you really?

Because it’s one thing to say “yes, hospitals are expensive”. It’s one thing to say “yes, it’s ridiculous that an ambulance ride can cost so much”. It’s one thing to say that “yes, it’s crazy that people think all opiates are bad and should be banned”.

It’s an entirely different thing to say “well, it’s great that my seizures are “absence” seizures, they could be so much worse - but I’m afraid to ever drive a car because if I blank out I could kill myself, my passengers, and anyone else on the road. I’ll just have to hope that I don’t develop different types of seizures as well because that would suck and I know people like to call 911 for stuff like that, even though I’d probably be fine and can’t afford to pay that bill.”

It’s an entirely different thing to say “yes the opiate crisis is a thing, and we should definitely be concerned about addiction, but just because some people are addicted to drugs doesn’t mean that those drugs shouldn’t be available to anyone. Including me, because I’d love some friggin’ pain relief over here. I’m tired of crying myself to sleep, or cancelling plans, or missing out on certain opportunities, because I’m hurting so badly.”

And it’s an entirely different thing to say “wow, isn’t it terrible that I’ve got energy disorders, epilepsy, cardiac issues, dysautonomia, osteoporosis, hypoplasia, adrenal insufficiency, hearing loss, vision issues, anxiety, depression, Brown’s syndrome, Klippel Feil syndrome, a feeding tube, central line, migraines, neuropathy... and I can’t even get some goddamn sleep.”

It’s one thing to recognize that there’s a problem.

It’s another thing to be on the receiving end of that problem.

And it’s another thing to actually do something about it.

[imissthefire]

I hate having seizures at school, they're highkey embarrassing and awkward and then I get sent home and ugh, this fucking sucks. Normally I wouldn't mind missing school, but I'm falling so far behind because this fucking undiagnosed disorder is driving me up the hecking wall. I've had an EEG that came back fine, I had an MRI and that's still TBD but it's getting so frustrating because my other doctors have been telling me for the past 3 years that they'll go away / I'll grow out of it... yet they've only gotten worse :))))) it wasn't until my school called an ambulance and I ended up going to the hospital after one of these that they decided to actually further investigate this, and then I had to wait 3 months to see a neurologist about it, and now I'm waiting on test results and more follow up just to make sure it isn't epilepsy, then we will see what else it might be. I'm getting tired if this shit.

[secondhand-sheep-shack]

I've made friends at work. One is 27, a libertarian lesbian with a special needs family member. B1.

One is a 20-something married, conservative trumper with a learning disability and a speech impediment, with a medical condition preventing her from driving. B2.

One is a 40-something married guy who gives B2 a ride to work 99% of the time, he's also a volunteer fireman and sometimes can't take B2 to work.

Today I got called at 1pm by B2 asking if I could give her a ride. Sure no problem... I have to clean my car and find the passenger seat.. But sure I can do that.

I pick her up, we get to work and I go clock in, her shift starts an hour after mine.

At lunch I get B1 telling me, "I'm sorry you had to give b2 a ride to work. Really sorry."

I just stared open mouthed. "Why?"

"Because it's B2."

"I don't get why you should be sorry."

"Because you had to suffer riding with her."

"Uh. OK. Thanks? 😒" I had no words. I walked off.

Guy catches me at 2nd break and basically gives the same apology. I'm now really pissed off and I want to know what the big deal is.

"Well she over shares and is loud."

"And?"

"That's it, but her disabilities..."

"Um. Just stop. If I had a problem with her, I'd take it up with her. I don't care if she overshares, is louder than you now, or anything else. I. Don't. Care."

So yeah. Because I was nice to someone who in all honesty could be sitting at home collecting a state handout check, but who is working full-time, going to school full time, has a seizure disorder and a learning delay, people should feel sorry for me, because I chose to be a decent human being?

I have friends who I've known a lot longer with a tenth of B2's drive and determination and who are happily sucking the government nipple for all it's worth. B2 shouldn't have to take an uber to get to work because this city doesn't have bus service to our facility. If she's willing to dress up and show up and do her fucking best, by gods I'm going to be sure she's got a ride there.

And the shit talkers can kiss my ass. I'd rather her be loud, and herself than the 2-faced people who claim to be decent individuals who manage to not be half as badass as B2 is. Because holy fuck could she easily give up and let the haters win. But no, she's fucking trying to be a better person by working and going to school full time. While being challenged at both.

This petty indirect bullying pisses me off.

Apparently it's cool to try to get others to stop helping someone who you're too special to help.

Nah, this ain't high school. I grew outta that shit a long damn time ago.

I just wish others would too.