#like she's still referred me to specialists to get tested

[dorimares]

had a gp appointment today to get referred for allergy tests bc i now can't drink red wine w/o throwing up violently a couple hours later + i wanna know if it's all alcohol or just wine i'm allergic to + the dr told me there's no way to pinpoint allergies if they're gut-based 😀 i'm just gonna have to try different drinks + see if i vomit or not 😀

[goldenlikedayl1ght]

the lakes - m. murdock

a/n: hey guys so i've been struggling a lot with the fact that i might have hearing loss (i'm going to the doctor next week) and as always i am projecting, but i am not 100% sure everything in this fic is accurate and for that i apologize. but it's my little passion project and i hope you enjoy <3 as always, comments and reblogs are always loved and appreciated! warnings: hearing loss, hearing aids, tinnitus, reader struggling with being disabled, some parts are more vulnurable and don't have the reader being like overly confident in their disability, matt being soft, some suggestive behavior at the end, kissing, nicknames, pretty pg-13 honestly word count: 3.0k summary: your hearing aids run out of battery, and you're forced to struggle through a day of ringing ears and being deaf. matt helps, as he always does. pairing: matt murdock x hard of hearing!reader now playing: the lakes - taylor swift "take me to the lakes/where all the poets went to die/i don't belong/but my beloved, neither do you."

“Are you deaf?”

“What?”

You’re eighteen, home from college for the first time since fall break. Your family sits around for Thanksgiving, and there are so many people talking. There’s about thirteen people at this long dining room table, and they are all talking at once. You’re sitting next to your sister, but you can’t hear her well.

You know she’s speaking, and you’re sure you’re yelling, but you’re frustrated.

“I said, are you deaf? I repeated myself like, four times!”

You feel your face flush.

“Sorry, I didn’t hear you. You’re mumbling, and it’s loud in here.”

Your sister looks at you like you’re crazy.

“I’m right next to you, and I’m not mumbling. In fact, no one is yelling, either.”

You poke your fork at your sweet potatoes and feel hot, angry tears in your eyes as you avoid everyone’s gaze.

Your mom sits across from you, and frowns, planning to tell you to make an appointment at the student health center when you get back to campus.

She doesn’t even have to. You’ve booked one by the time she says it to you.

At the student health center, they administer a hearing test, and then refer you to a specialist for further testing. You call your mom, crying and she gently comforts you, before driving to the nearest bookstore and picking up a book on hearing impairments and a copy of ASL for Dummies.

At the specialist, they do another round of tests. Your doctor tells you that you do in fact have hearing issues and that you should come back in a year for more testing, to see if your hearing gets worse. For now, you get a doctor’s note that requires all your professors to take your hearing impairment into consideration. The process for getting that applied at your university is painful, and only gets worse through your years there.

Before you get to law school, your doctor tests you again, and tells you how your hearing has been decreasing in quality in the past few years. He says that you’ll need hearing aids to regulate it. You cry because you cannot afford that.

You get captioning accommodations throughout law school, as well as a note taker for certain classes that are entirely lecture based. You still try to take your own notes, but it frustrates you that suddenly you need all this help. Your own notes are incomprehensible and often miss key parts of the lecture as you sit for a few minutes trying to decipher what your professor had said a few minutes prior.

You go into corporate law after law school, choosing to stay out of court initially because you find yourself frustrated that you wouldn’t be able to process all of what’s going on due to the many voices.

You stay at this company long enough to get your hearing aids, long enough to pay your loans, and long enough to save up a good fund for your hearing aid needs.

You quit your job and get hired at Nelson, Murdock & Page as an interim while you decide what you want to do.

With your hearing aids, life isn’t so frustrating anymore. You find yourself enjoying casual chatter and not worrying about processing what your friends are saying. At family dinners, you take your hearing aids out when you’re mad at your family, to which your stepdad, another hearing aid user, always laughs.

And, despite the pay not being stellar at your job, you love it. You love working with people who need help, love fighting injustice, and you love your coworkers.

...

If only Matt Murdock would reciprocate your feelings towards him.

You’ve been dancing this dance for months. You come into work with coffee and stutter when you get to his doorway.

You wonder if he’ll ever know how desperately you want him.

You go about your days quietly, going to the bar with them at the end of a long week. You love your friends and find yourself hoping they know how much you love them.

Karen and Foggy, as well as Foggy’s fiancé, know about your hearing aids since they sit sort of clunkily on your ears.

You don’t tell Matt, though, not at first.

You know how bad it is, to not even tell your blind crush that you have hearing aids. But you’re embarrassed. It makes you sound like an old person even though you’re in your twenties.

But when Matt crawls into your window late at night, bleeding, you don’t even flinch as he crashes onto your floor behind you. You’re reading, your hearing aids out, and he’s unsure why you can’t hear him. Your heartbeat had no reaction, it’s like you don’t even realize he’s there.

He taps you on your shoulder and you turn quickly, and gasp, before starting to sign at him. Even in his disoriented state, he knows you’re doing something with your hands and moving your mouth. At first, he thinks that he might have stuff clogging his ears, but then he realizes you’re signing, probably because you think Daredevil isn’t blind.

He takes off his helmet.

“Matt?” You say, and it comes out a little louder than it should, because you can’t hear yourself to gage how loud you’re being.

He says something, and your gaze focuses on his mouth, where you can barely make out what he’s saying.

“I can’t hear you.” You say, softer now. You reach over to your bedside table and put your hearing aids on. By the time you look back, Matt has passed out on the ground. Oh fuck.

You get your first aid kit and begin to work on his wounds. When you’re done, you pull him onto your couch, now stained with his blood, and watch as he sleeps. Blood covers your hands, and you listen to him breathing.

When he wakes up that morning, you’re asleep on the couch, and when you feel him start to stir. You grab your hearing aids, and turn them on, before watching him wake.

He says your name softly, and you take his hand in yours.

“Hey.. You.. You’re Daredevil...”

“You’re deaf.”

“Hard of hearing. Not fully deaf, just… My right ear is a lot better than my left, but without my hearing aids I’m close to deaf, yeah…”

“Why didn’t you tell me?”

“Why didn’t you tell me you were Daredevil?”

“I was scared. Scared that… That you would view me differently, scared that you wouldn’t like me as much.”

“I was scared too..”

“When did you start losing your hearing?”

“In college. I realized it when I went home for Thanksgiving, and then it got worse from there..” You tell him. A hand reaches out to your face, and you lean into it, letting your cheek rest in his palm. His fingers trail up towards your ear and gently run his fingers over your hearing aid.

“Thanks for stitching me up.” He says softly.

“No problem.”

“The hearing aid does explain the buzzing I always hear when you’re around.”

“You can hear my hearing aids?”

“Apparently. I can hear a lot of things. I have heightened senses. You use pomegranate shampoo and had red velvet cake for dessert tonight. Your heart is racing.”

Your face flushes.

“I can turn them off if it’s bothering you.”

“How would you hear me, then?” He has a point.

“I just don’t want them to bother you.”

“Don’t offer to hide your disability just to make other people more comfortable.”

You kiss him when he says this, in a careful way. You’re gentle, making sure not to hurt him as you do. He lays there and lets you kiss him, his hands on your face. You realize you had no reason to be scared that Matt might reject you for your disability, because he is the only person in your everyday life who really gets how it is to have a disability that affects all aspects of your life.

You trace the healed scars on his skin as you kiss him gently, careful not to hurt him. You promise that you’ll kiss him more passionately when he isn’t freshly stitched up.

• • •

A few weeks passed after that night. You and Matt start seeing each other more and more as you fall deeper in love. You find it silly that you wasted so many days, afraid of talking to each other and maybe disappointing each other over the fact that you both lack a vital sense.

But Matt never views it that way. You wear hearing aids and it’s perfectly fine because most of the time, you aren’t struggling to hear him and cannot communicate with him, and he can’t see when you can’t hear him.

Instead, Matt loves that he can hear your hearing aids buzzing softly because it always alerts him that you’re there. He can hear your heartbeat and smell you, too, but it’s not quite the same as this soft little buzzing that reminds him often of a bee.

Except for this one day.

You slept over at Matt’s on a Thursday and really, you should have known better. You knew your hearing aids were going to need a battery change soon, but you’ve been so busy with work and with Matt, and worrying about him at night, that you’re tired. So tired that you forget to pick up batteries before your hearing aids die.

You sneak out of Matt’s apartment early, sending him a text that you needed to go get changed before work. Really, you want to avoid the fact that you wouldn’t be able to hear him. But he didn’t respond to your message. You decide that you don’t care at this moment and head out to work, debating the right way to tell your coworkers about your predicament.

When you get to work, Foggy is immediately talking to you, and you are tense.

“Foggy—” He’s not stopping. It sounds like he’s mumbling, and there’s this ringing in your ears. “Foggy, I can’t hear you.” He finally looks to you, and says something, you make it out to be a phrase of confusion. “My hearing aids died.” You tell him. You’re frustrated, and Matt isn’t in the office yet.

You deem this as a blessing and a curse. Foggy goes to tell Karen what’s going on and as you’re settling down for the day, you get a text. You hope it’s from Matt, but when you see Karen’s name, you falter slightly.

‘Hey! Foggy told me what was going on. We’ll have your calls redirected to one of us and you can spend the day doing housekeeping and paperwork.’

‘Thanks’, You respond, “Sorry about all this. I’m usually on top of my battery life.”

“Don’t worry about it. These things happen.”

“Still, thanks. Did you hear from Matt at all?”

“No, he probably just slept in late. He should be in soon.”

You try to ignore your anxieties over his absence even though you know that when he does come into the office, you’ll have to struggle to communicate with him all day.

So, for the first hour or so of your day, you try to get some work done but there’s a light ringing in your ears that’s getting worse and worse as you attempt to try and focus on other things. Everything sounds so muffled. You’re so focused that your teeth grind against each other, your muscles tense, as you attempt to try and block out the ringing in your ears.

You have a feeling that by the time you leave today, those hot frustrated tears will be threatening to pour once more.

You don’t hear Matt as he steps into your office and stands by your left side, where you’re almost completely deaf. He stands there for about ten minutes, trying to get your attention before he realizes the light buzzing of your hearing aids are not there.

You must not have them in.

So his hands find your shoulders gently, and instead of tensing, you actually relax under his touch, because you realize that it has to be Matt. A slight turning of your head confirms it and you lean into his touch.

Neither of you say much for a while, deciding to let your frustration slowly dissipate as you lean into his warm hands. They stay on your shoulders and upper arms, rubbing gentle patterns into your skin.

After a good ten minutes of this, his body shifts to your right side and he leans down, before speaking at full volume, maybe even a little louder, just to make sure you can hear him. It still sounds like he’s mumbling, but you can hear him.

“Forgot your hearing aids?”

“Batteries died.” You tell him. “You never answered me.”

“My phone died. I forgot my charger, too.. Are you gonna be okay to work all day?”

“Mhm..” You smile softly, “You’re gonna have to help answer calls, though.”

He kisses your cheek, and you lean into the warmth.

“Anything for you, sweetheart.” He says, a soft smile on his face.

The day goes by pretty much as you expect it. You spend it doing paperwork and dodging phone calls, your tinnitus gets worse as the day goes on. By the time the day is finally winding down, Karen sends you one final text.

“Matt’s staying a little late to catch up on some work. Want me to walk you home?”

“No, I’ll be fine. Thank you.”

You realize that because she and Foggy are heading home, you’ll be able to sit with Matt, maybe get a little bit of peace. You’re thankful, too, because you’re about to lose your mind over all of this. The ringing is just getting to be too much.

You wait a few minutes after Foggy and Karen head home before you go into Matt’s office. He smiles at you and gestures for you to come in, and you do. You lean against his desk, as he speaks loud enough now that you can hear him.

“I’ll just be a few more minutes, Bee.” Even the soft-spoken nickname doesn't get you out of your funk, too busy wanting to get on your hands and knees and beg God for your hearing back.

That doesn’t usually happen, but every once in a while you ask him for a normal life.

God sends you a blind man as your soulmate, because he must think that the whole thing is quite funny.

“Okay…”

You feel hot tears pooling in your eyes as you bite your tongue and dig your fingernails into your skin. You almost draw blood.

“What’s wrong?” He can tell that something is wrong. He can always tell, and you’re foolish to think anything less of him, and even more foolish to forget his super senses. A part of you bites back a bitter feeling, since you wish you could’ve had super smell, super sight, super taste, anything in exchange for your hearing. You were not given an exchange, only forced to give, with nothing in there for you.

You forget that your boyfriend has super senses and can taste and smell your salty tears and blood in the air. Damn him.

“Loud… Ringing in my ears, my tinnitus is always really bad when I don’t use my hearing aids for a while..” You say softly. “It’s just.. it really hurts...” You confess, tears slipping down your face.

“Sweetheart..” He takes off his glasses and rests them on the desk in front of him. “C’mere..” You can’t hear that last part, but the way he opens his arms gives you the hint.

You sit on his lap, burying your face in the crook of his neck with a shaky sigh. You feel the thumps of his heartbeat and hold onto it, the ringing in your ears slightly muffled by his skin. It doesn’t fix the problem, but it helps.

His hands linger on your body, gentle caresses of your knee or thigh happening here and there. He just wants you to know he’s there, in the same way he desires when everything becomes too much for him.

“”m sorry..” you say gently, and he just hushes you softly, kissing your head. He traces patterns into your skin. He traces words into it as well.

L-O-V-E.

S-W-E-E-T-H-E-A-R-T

He traces your name, his, and your last names.

You kiss him softly, realizing that you might never be 100% okay with your hearing, but Matt will help. He’ll understand. He loves you, and it’s enough to be confident in your future again.

You spend only a few minutes more in the office before you decide to head home, his hand never leaving yours.

You make it back to his apartment and Matt plugs his phone in in case you need to text him and get his attention. You wind up stealing a pair of sweatpants, a tee shirt, and a pair of fuzzy socks. The two of you wind up tangled together on his couch.

Your ear is pressed against his chest as he gently caresses your skin, occasionally moving your hair from your face. He mumbles sweet nothings, and while you can’t hear them, you feel the rumbling vibrations in his chest, and you relish in them. You bathe in the feeling of his heartbeat thumping against his skin.

You fall asleep like this, with Matt touching you and talking in this low tone to make sure you can feel the vibrations of his voice in his chest and in his throat. It’s enough just knowing he’s there. That this thing you thought would deem you unlovable is no match for Matt Murdock, who on your wedding day will throw up the sign for ‘I love you’ in ASL.

For Matt Murdock, who, when you’re taken for loving the devil, will find you and take you into his arms and kiss you so that you know he’s real.

For Matt Murdock, who touches you in all the right ways so you can hear the sounds of your own pleasure.

For Matt Murdock, who will gently trace patterns into your skin when you need to be grounded. For Matt Murdock, who feels himself slipping further and further in love with you and finds himself searching for the soft buzz of your hearing aids when you walk into the room.

[petcr3]

something to rely on | chapter one

series masterlist (coming soon!)

summary: despite being separated, bob floyd is there to support his wife and their son after she sustains some injuries in a car accident.

word count: 4.1k

warnings: separation/divorce, reader is frequently referred to by she/her pronouns, is called bob's wife/ex-wife, mrs. floyd, etc. bob and reader have a son, but i have tried to be as inclusive as possible with regards to appearance and the type of family! (meaning, if i've done my job correctly, charlie can have been adopted, not necessarily carried by the reader, etc.) non-graphic reference to a car accident, non-graphic description of injuries. chapter one is set entirely in a hospital. readers parents are present in the story, still married, and have a good relationship with reader because this is fantasy lol

a/n: lads, it's here. some of you have been hearing me blather about this story for fucking ages and chapter one is finally done. i'm proud of it, i think, but if nothing else i simply cannot keep sitting on it, so here it is! very excited for this story's future <3 i hope you love charlie as much as i do lol

It’s a rare occasion that one hears Bob Floyd before seeing him, but you suppose your getting into a car accident is a special enough occasion. 

Things feel hazy–– with two broken wrists and a broken leg, you’ve been given quite the painkiller. You’re not sure how long you’ve been awake, exactly, but it can’t have been very long. There’s a digital clock on a small table next to your hospital bed, but your neck is too sore to turn far enough over to see it. A thick wooden door is shut against the buzz of the floor outside: the ringing of phones, the click of computer keys, and the clatter of patients being wheeled to and from scans and tests and specialists. 

Even amidst all that, the sound of Bob’s words cuts through. He’s raising his voice, you realize. That’s not like him.

“I’m sorry, sir,” the nurse says on the other side of the door, “but outside of visiting hours I can only admit family, and––”

“I am family,” he says, impatient. 

“I understand that, but when a patient is separated––”

“Separated,” Bob interrupts, “not divorced. That is my wife and the mother of my child, so will you please let me see her?” It sounds much more like a demand than a question. The nurse sighs, clearly frustrated. 

“Let me go speak to her.” She steps out from behind the counter and cuts Bob a severe look. “If she is awake, I’ll let her know you’re here. But given that rest is one of the most crucial things for her right now, I will not be waking her up. You can wait.”

“Thank you,” comes his clipped reply. The nurse approaches your room, only a few steps away from the front desk–– Bob would have just gone straight in, had he known— and when the door creaks open, he can be seen standing over her shoulder–– a respectful distance behind, at least.

“Ma’am, there’s someone here to see you,” she says. You can tell it’s taking everything Bob has not to run to you, but he’s smart enough to know that showing this nurse any more disrespect isn’t wise. “He says he’s your husband,” she continues, “but if you don’t want to see him, I can tell him to leave.”

“No, that’s okay,” you say, “he can come in.” She turns around only to discover Bob right behind her. He squeezes quickly past, murmuring a hurried thank you before practically flying to your bedside. All his frustration quickly dissipates as he leans over you, a deep furrow in his brow. Over his shoulder, you see the nurse shake her head, exasperated, and leave, shutting the door behind her.

“Hey honey,” Bob says, hand lifting to brush across your cheek, as if it’s two years ago and nothing has changed. “Are you alright? What happened?”

“I’m okay, Bobby,” you reply, tired. You surprise yourself, though, using his old nickname like that. Since you two broke up, you’ve only ever called him Bob. “Someone lost control of their car in the rain, apparently. You owe that nurse an apology.”

“And I’ll give her one later. First I need to know that you’re okay.”

“I just said that I’m okay,” you laugh softly. “Bob, I’m fine.” Reluctantly, he nods, leaning back to grab at a chair. He won’t even stand all the way up, refuses to take his eyes off you lest you run off somewhere else to nearly get yourself killed.

“How’s Charlie; is he with your parents?” You nod, heart clenching at the thought of your son, how distressed he must be right now.

“Yeah,” you say, voice getting a little watery. “Yeah, I got to talk to him a little while ago. He wants to come visit after my surgery tomorrow.” Bob’s brow furrows. 

“Surgery?”

“Just my left wrist. The right one and the leg only need braces, but,” you sigh, “yeah, the left one took the door pretty hard, so.” He nods.

“How about your head? All okay up there, no bleeding?”

“I have a concussion, but that’s all. They know what they’re doing here, Bob. Don’t worry. I’m gonna be just fine.” He studies you for a moment, then sighs, nodding his head again. “Not so fun being on the other side of it, huh?” you say without thinking. It isn’t meant to be cutting, but blue eyes snap up to your face, a faint expression of shock on Bob’s features. 

Still, you have a hard time feeling too guilty. How many times have the roles been reversed? How many times have you held your baby boy to your chest murmuring reassurances that you can’t promise are true? How many times has Bob been gone, unable to tell you he was okay or even alive? Or looked up at you under the harsh white light of a hospital room on base and told you there was nothing to worry about when you both knew that there was? 

Bob schools his expression into something a little softer and gives a curt nod. You can’t decide if that was over the line. But that had always been the problem, hadn’t it? 

Neither of you had known how easy it would be to push each other over their limits. You’d thought love and a thick skin would be enough to survive the looming fear of losing your husband. Bob had thought it would be easier to outrun the guilt he always felt leaving you behind, the way it weighed on his chest like an anvil. Eventually, your wounds were rubbed raw and his ribs began to crack beneath the pressure.

The times when he was home were supposed to be precious, but they had become tense, uncomfortable. It wasn’t good for either of you, and it certainly wasn’t good for three-year-old Charlie. Splitting up had been the best choice, even though it pained you both to admit it.

Bob had been adamant about a separation rather than a divorce. Ex-spouses of the military were still entitled to some benefits, but for Charlie’s sake and yours he wanted to remain legally married. You’d both agreed that if you met other people and got serious enough, a divorce would be back on the table. It hadn’t been the easiest decision, but now, laying in a hospital bed, you can’t help but feel grateful. And how many people can say their ex husband came rushing to their side in an emergency? 

Regret is already creeping up across your skin.

“I’m sorry,” you say softly, reaching to touch the back of his hand. Your fingers brush awkwardly against his skin where they protrude from your brace, but you can see the gesture means something to him–– his eyes shine a little sadly when he looks at you. He gives a faint shake of his head. 

“S’okay. Me too.”

Despite your best efforts to persuade him otherwise, Bob stays the night in your room, sleeping with his legs slung across a second chair the nurses had been kind enough to provide for him. (He’d apologized to the nurse he spoke to when he arrived, and she’d taken it rather graciously, all things considered. In her place, you’re pretty sure you would have had him thrown out.) You fall asleep fairly easily, exhaustion having taken its toll, but you wake up in the wee hours needing the bathroom. You press the call button, hoping it won’t wake your sleeping companion, but Bob rouses when Jermaine, one of the nurses, comes in. The whole bathroom song and dance is a process you certainly don’t enjoy, but you’ve gotten used to it over the past several hours. 

“Can’t get enough of me, huh?” Jermaine quips, walking to your bedside.

“I keep guzzling water when he’s not looking,” you say, nodding towards a still groggy Bob. Jermaine only laughs and pulls back the covers.

“All right, ready?” 

“Yep.” You grimace as he braces his hands beneath your armpits to help lift you up enough to get into your wheelchair. You sigh as Jermaine rolls you to the bathroom and braces an arm around your waist to help you onto the toilet. The door stands open, but you’re too drained to care–– besides, this isn’t anyone’s first rodeo.

You don’t see the way Bob’s eyes widen with worry. How he watches each maneuver carefully, filing it away in the back of his mind. The decision had been made before he walked through the door, really, but seeing you struggle only cements it. He doesn’t say anything as Jermaine helps you back to bed–– only a quiet thank you as the nurse leaves the room. He can talk to you about his plan tomorrow.

A low murmur of voices filters into your consciousness as you wake that morning, your eyes flickering open to see Bob standing with Dr. Alvarado, who will be performing your surgery. She notices you shifting in your bed and comes to your side, Bob following suit on the opposite, returning to his seat.

“Good morning, Mrs. Floyd,” she says warmly, “how are we feeling?” Your mouth is dry and you swallow thickly before responding.

“I’ve been better,” you rasp, wincing at the scrape of your voice. Bob is holding out a cup of water before you even have a moment to think, and you start to reach for it before faltering. In the fog of waking up, you’d almost forgotten.

“I’ve got it,” he says quietly, bringing it to your lips. You drink, far too worn out to protest.

“Your procedure is scheduled for 12:30 this afternoon. It’s about 8:15 right now. That’ll give you some time to rest before pre-op. I’ve also been told you have a special visitor, if you feel up for it.” Your heart lifts, and you can’t help but look expectantly up at Bob. 

“Charlie?” 

The hopeful lilt of your voice splinters something in his heart. He smiles, tight-lipped but genuine all the same, and nods. 

“Uh-huh. I know you said the plan was post surgery, but your mom called saying they were up and ready to go. I figured you’d want to see him.”

“Yeah,” you say, voice high and thin, “yeah I’d like that.” Dr. Alvarado smiles. 

“I’ll let them know. They’re all very anxious to see you.” You nod, tears slipping down your cheeks. Ordinarily, you try not to let Charlie see you crying. With the separation, you’ve been doing everything you can to be his rock. You remember how scary it was when you were a child to see your parents upset, or worse, hurt. But today, you don’t know if you’ll quite be able to manage it. Gracelessly, you swipe at the tears on your cheeks, but before long, Bob is at the ready again, tissue box extended toward you. You nod your thanks and clasp one in between your fingers. Blotting is much easier. 

You’ve just about gotten it together when the door opens again. 

“Mommy?” Charlie calls, and you hate how you can hear the frightened tremble of his voice. He makes it a few steps over the door jamb when he sees Bob. 

“Daddy!” For a heartbreaking moment, wide eyes dart between the both of you, unsure of where to run. 

“Go say hi to Daddy, sweetheart,” you say, heart swelling to see the reunion. Charlie beams and runs directly into Bob’s arms.

“Hey, big man!” he says, scooping Charlie off the ground in a strong embrace. “I missed you so much, little bear.” He presses a big kiss to your son’s cheek and is rewarded with a delighted giggle that has you crying again. Hurriedly, you dab at your eyes once more.

Your parents enter the room behind Charlie, your mother’s smile wavering and your dad’s brow furrowed. The braces make hugs awkward, but your parents’ presence is an enormous comfort.

“Charlie’s been very brave,” your father informs you. “And we’re all very glad you’re okay.”

“Me too,” you say wetly, wishing you could hold their hands. “I love you guys.”

You cast a glance over to your left, where Bob and Charlie are engaged in conversation, faces close together and voices hushed. Watching Bob parent has always made your heart ache, even now when things have fallen apart. He was meant to be a father, plain and simple. People who don’t know him might expect a Navy man to be gruff, tough on a child, especially a son. But Bob is all gentleness when it comes to your Charlie. He is patient and invested and even though you two aren’t together, it’s difficult to imagine parenting Charlie with anyone else. 

You tear your gaze away to talk with your parents, explaining what happened and asking about how Charlie has been coping over the course of the last few hours.

A few feet away, Bob has his son cradled close in his arms. 

“I was really scared,” Charlie confides in him, “but I gotta be brave for Momma.” Bob’s heart breaks just a little, and he smooths a hand over Charlie’s hair. Perhaps this instinct to protect is just built into the little boy– knowing you and Bob, that’s a distinct possibility. But Bob can’t help but worry it’s a result of the split. 

“You don’t have to be brave for Momma, honey,” he says softly. “That’s our job. Parents get to be strong for their kids, not the other way around. It’s okay to be scared when someone is hurt. And it’s also okay to express that. Especially with me and Mommy. And being strong doesn’t mean you can’t feel your feelings. In fact, being able to feel your feelings is a part of what makes a person strong, because some feelings are really hard.” Charlie listens to his father with rapt attention–– he always has. “But it’s important not to ignore them. Does that make sense?” He nods sagely when Bob is done talking.

Bob can’t help but smile, heart swelling with affection. It’s moments like these when he thinks he could leave it all if it meant getting to spend every second of every day with his baby boy. 

“Should we go say hi?” he asks, bouncing Charlie gently against his hip. Charlie nods, his gaze flickering over to you. 

Though you’re talking with your parents, you can’t take your eyes off of your son. Call it selfish, but ever since you’d been able to think straight you’ve wanted nothing more than to see him. You’re reaching out for him the second Bob starts towards you, but he gives you a look.

“With your leg?” he asks quietly, even though Charlie is right there in his arms.

“I still got one good one,” you quip,” and I think a hug is gonna help me get better much quicker. Besides, all my problems are below the knee— I’ll be fine.”

Bob has always had trouble saying no to you. 

“Be gentle, okay bud?” Charlie nods.

Carefully, he sets Charlie down in your lap, positioning him mostly on your uninjured right leg. 

“Hi baby,” you beam, the pain you’re in practically forgotten. “I’m so happy to see you!” Charlie snuggles immediately into your chest, eyes impossibly big when they look up at you. Tucking him under your arm is awkward, but you do it anyway.

“Hi Mommy,” he says quietly, like he’s afraid talking too loudly will hurt you.

“Hi,” you say again, matching his hushed voice, smile wider than it’s been for the duration of your stay. Bob stands slightly off to the side, feeling a little bit like an intruder. Still, he can’t help but watch the way your eyes sparkle when you look at your son. He’s never seen anything like it. 

A gentle hand on his shoulder catches his attention, and he turns to see your mother, her expression warm. He counts himself incredibly lucky that your parents don’t hate him. Sometimes he hates himself for what happened, and yet they still treat him like one of their own. The three of them exchange hushed greetings, each thanking one another for taking care of the two of you.

Over in your hospital bed, you’re playing with the ends of Charlie’s hair. He’s been telling you about everything that happened between yesterday afternoon and now, cheerily informing you of how much he cried and how he got to choose what he and your parents had for dinner last night. You drink in every detail with enthusiasm, grateful as ever for his enormous heart and his resilience.

“I was really scared,” he says softly after a moment. You nod.

“I bet. I was scared too.”

“Daddy says it’s okay to be scared.”

“Daddy’s right, baby. It’s more than okay to be scared. It’s important— it’s how our brains keep us safe.”

“Really?”

“Uh-huh. You know how I’m scared of snakes?” Charlie nods. “Well, not every single snake is dangerous, right? But there are some that are. And because my brain remembers that some snakes are dangerous, I get a little scared when I see them. That fear is my brain telling me to be careful and stay safe.”

“So I was scared because it’d be dangerous if you got hurt?”

“Kind of! It can also be scary to not know what’s happening, right? Because if you don’t know what’s happening, it’s hard to get ready to deal with it. And it can be scary to know that something sad might happen, because it’s hard to feel sad.”

“I don’t like feeling sad,” Charlie says, nodding his understanding.

“Me neither, baby bear. But today I’m not even sad, because you’re here.” Your son’s cheeks turn pink and he hides your face in his chest. Heart swelling with fondness, you cross your arms over his back in an awkward embrace and press a kiss to the top of his head.

“Is it okay if I’m a little sad?” he asks, voice muffled by your hospital gown.

“Of course it is, sweetheart. You gotta feel your feelings. And feelings don’t last forever; they change all the time, right?”

“Right.”

Out of sight, Bob swipes a few tears from his eyes. He’s always proud of Charlie, but he’s proud of you, too–– with three limbs freshly out of working order, you would be well within your rights to be out of sorts, but there you sit, still parenting admirably. Beautifully, even. Your father squeezes Bob’s shoulder and he looks up, almost a little startled. Your father smiles and the two men exchange a nod. 

Your mother steps over to your bed and pets a hand over Charlie’s hair.

“I think me and Grandpa are gonna go home for a little while, honey,” she says to him before looking at you and resting a hand on your shoulder. “Someone gave us a good scare yesterday and I don’t think either of us slept very well. We’re both a little worn out.” Suddenly, she seems to catch herself. “Unless you want us to stick around and––”

You shake your head and reach out an appreciative hand to cover hers.

“Go get some rest, Ma.” She nods.

“We will. But we’ll be back when you come out of surgery. Bobby told us he’d keep us updated.” Too tired to even think that far ahead, you nod. 

“Thanks for looking after Charlie,” you say, tangling your fingertips with hers.

“Well, that’s my pleasure,” she says, pressing a loud kiss to her grandson’s cheek. “And we can figure out next steps, we’ll find someone—“

“Mom,” you say softly, “let's just— can we take things one step at a time for now?” She nods–– the anxiety of it all reads clear on your face.

“You know, you’re right. Let’s get you through surgery first.” You nod, grateful. “We’ll see you soon, then.” Your mother smiles and turns to get her bag. Charlie giggles as his grandfather comes over to playfully jostle his shoulders.

“Be good for your mom and dad, okay kiddo?” Charlie nods eagerly.

“That’s my guy,” your dad says fondly, giving your son a hug before turning his attention to you. “You give ‘em hell in there.”

“What,” you laugh, “in surgery? Dad, it’s just my wrist; I’m gonna be fine.” He shrugs.

“Can’t hurt though, right?” he says lightly, but you can see a glimmer of anxiety in his eyes. He leans down to kiss your cheek and you return the gesture.

“Right,” you affirm, softening. “I love you, Dad. I’m gonna be okay.” Your dad gives a final nod and links arms with your mother as they leave the room. 

It’s so easy to forget that to him— to both your parents— you are still a child. Charlie is still so young, it feels impossible that he’ll ever be as old as you are now. Of course, you still marvel at the fact that he’s as big as he is; that he can walk and talk and do math equations and paint pictures. But it’s easier to manage how much he’s grown because you can still bundle him up in your arms and count on one hand how many birthdays he’s had. Maybe if you were having less of an emotional day, you’d be able to imagine what it’ll be like when he’s grown up, but you can feel tears welling up in your eyes again so you push the thought out of your mind.

“Mommy?” Charlie asks, bringing your attention back into the present.

“Mm?”

“Did Grandpa use a bad word because he’s very stressed?” Laughter sputters out of you before you can help it, and Bob raises an amused eyebrow.

“Yeah, baby,” you say, “I don’t think he was thinking very hard about which words he was choosing. He just meant that he wants my surgery to go well, that’s all.”

“It’s like telling someone to give it their all,” Bob explains, coming to sit down at your bedside again.

“It’s what Daddy does when he’s on a deployment,” you offer, curling your arm into something akin to a flexed muscle, “he gives ‘em heck.”

“And that’s what Momma’s body is gonna do when she’s in surgery. It’s gonna do everything it needs to do to keep her safe while she’s asleep.” Charlie looks between you two, worry creeping back into his features at the mention of the surgery.

“Hey,” you murmur, “I’m going to be okay, Charlie-bear. I promise. Sometimes things can go wrong during a surgery, but the likelihood of anything bad happening is very, very low.” Charlie nods, wide-eyed. “So there isn’t anything to worry about sweetheart. But it’s still okay to be scared, right?”

“Right,” comes his hushed reply. Your heart aches not to be able to soothe his anxiety, but you know there’s no sense in trying to talk him out of it–– especially in the wake of what you’ve been trying to teach him. Still, it seems to you that the rules shouldn’t apply to Charlie, with his delicate soul and enormous heart.

Bob lays a comforting hand on your son’s back and his little form immediately relaxes into the touch. The three of you sit in comfortable silence for a little while, but soon the door creaks open and Jermaine enters with a wheelchair.

“Is this Charlie?” he asks brightly. 

“It is!” you chirp. The boy in question looks up shyly. “Charlie, this is my friend Jermaine. He’s been helping me since I got to the hospital.”

“Your mom is a tough lady,” Jermaine says warmly, squatting to be closer to Charlie’s eye level. “I promise we’re gonna take very good care of her.” Charlie nods.

“Pinkie promise?” he asks, heartbreakingly earnest. Jermaine smiles.

“You got yourself a deal.” He locks his pinkie with Charlie’s and stands up. “I’ve gotta take Mom for a couple of tests before her procedure, and then we’re gonna take her off to surgery. But you’ll get to see her in a few hours when she wakes up, okay champ?” Charlie holds on to you a little tighter and peers up at his dad, who nods encouragingly.

“Okay.”

“Mom is very lucky to have people that care about her so much,” Jermaine says. “You should be proud.” A little divot of determination forms between Charlie’s brows and he nods. Bob starts to stand and Charlie clambers around to give you one last hug.

“I love you Mommy,” he says. You squeeze him as tightly as you can and press a big kiss to his cheek.

“I love you too, baby bear. I’m gonna see you so soon, okay?”

“Okay,” he says, a heartbreaking waver in his voice. You give him another kiss before Bob scoops him up again, and before you know it, Jermaine is wheeling you off into the hospital halls. 

Back in your room, Bob has Charlie wrapped up in a tight embrace.

“Everything’s gonna be okay, baby bear,” he coos, “everything’s gonna be okay.”

[am-i-the-asshole-official]

AITA for getting snippy at somebody over how they handled their mom's death? At the beginning of 2021 ballpark, a friend's mother was having some neurological symptoms two or three weeks after getting a covid vaccine. Notable detail: the friend in question has a diagnosis that causes seizures and is genetic, so something neurological had to come from one of their parents, but we didn't know which. The mother went to the doctor who referred her to a specialist, and the specialist basically saw that she was dead broke and made getting her a CT scan or an MRI the absolute bottom of his list of priorities. She was sent home without any tests being done. She died about a day and a half later of "unexplained causes". (Amerikkkan healthcare for ya)

My friend, instead of blaming the neurologist who blew them off, decided to blame... you guess it: the covid vaccine. Claimed vaccines now give you encephalitis out of nowhere. Went on a full rant on facebook and then proceeded to act very smug about refusing any and all vaccines from that point forward.

I hadn't heard anything from them in years and was shocked to see something like that, but more to the point, I work in the healthcare industry. I know vaccines don't and CAN'T do that. It's way more likely that their family neurological thing reared up and started causing problems, and the lack of medical treatment was what killed her.

I tried to keep my response clinical and explain exactly why the vaccine definitely did not kill my friend's mom, but I can't deny that I got a little judgmental when pointing out that processing your grief like this actively puts other people in danger because now you're running around with no vaccine and are at greater risk of spreading something - because of course, the friend is also refusing flu shots. Even if my friend never spread anything, I don't want them to GET sick with covid either. Covid sucks and it'd be nice if my friends did not sustain permanent brain and vascular damage from it.

But still, I basically lectured a person after they just told me their mom died in a traumatic way, which feels very shitty. AITA?

[shotmrmiller]

okay so i've had an idea, and my destiny 2/cayde-6 brain worms are too strong so i'm never personally going to write this BUT. had a thought. about civilian specialist!reader, an ethical hacker that works with agencies of all sorts to nab cyber criminals, with a specialty in trafficking. SO, the idea is that she's been working in a little hacker pod of primarily women and LGBT folks. basically has formed a queer little social bubble where there is nary a cis-man in sight.

enter the 141.

they're after some guy that's difficult to pin down. too tech savvy for their usual intel gathering techniques. so, reader gets called in. referred. price is told, "top of their field, a true professional, won't find anyone better." so, when a tattooed, green haired girl with an attitude and a mouth for back sassing shows up, he's flummoxed.

but soap, dear johnny boy, is smitten. head over fucking heels puppy boy love.

she passes all the tests, proves to be every bit of the professional while on a job that was promised. so she gets added, temporarily, to the team. has to be on site with 'em too, something about needing direct access to a closed network, who knows none of them really understand what she's saying anyway.

so they're on the job, out in the field, and reader has been trapped in testosterone soaked HELL for weeks now. it's getting to her. the belches, Ghost's crass jokes, the Horrible Feet Smell. the bulldoze ahead without consideration attitude of self assured, confident men that haven't really been told 'no' enough in their lives.

and johnny, poor johnny, overhears her say to gaz (cause lets be honest, he's the only one of them that'd have a skin care routine and regularly moisturize so she's bonded with him the most), "i can feel this experience actively turning me into a lesbian" after watching price flick a still lit cigar into the dirt and hock up a smokers lung loogie to finish it off. johnny panics.

from then on he is Desperately trying to get the lads to clean up their act because "no. no, no, no, she cannae be a lesbian i havenae asked her out yet." (─‿‿─)♡

i'm gonna keep it a stack , i think i've seen some like hacker girl who's got a whip for a tongue and attitude for days on here somewhere, alTHOUGH i think she pulled in price, i can't really remember.

she was all tatted up too i think?

it's out there, i just know it.

johnny nagging behind the guys like please god stop being disgusting i need her number is killing me though

[thedisablednaturalist]

If you have mysterious chronic pain and have the means, here's a list of doctors you should see other than your primary and a rheumatologist:

Neurologist and/or sleep specialist

Pain management doctor (also sometimes called pain and spine doctor)

Therapist that specializes in helping physically disabled people (having chronic illness sucks and you need someone to talk to)

Psychiatrist (most people with chronic illness also need psychiatric meds)

Physical therapy or rehabilitation center that specifically has procedures for chronic illnesses. My chiropractor acts as this for me but I'd only recommend that as a last resort. If you have something like fibromyalgia or ehler dahlos syndrome you need to be very careful with how you stretch and how much exercise you do. My chiropractor has special exercise equipment that is very gentle and has a lot of padding to reduce pain.

ENT (Ears, nose, throat doctor)

Nutritionist

A primary care doctor will at most only perform blood tests. Many illnesses do not show up on these blood tests. You want to get checked for rheumatoid arthritis, lyme disease, and lupus. Even if your doctor tells you it's because your vitamin d level or iron is too low, I would still recommend further testing.

They'll most likely refer you to a rheumatologist regardless, but unless you actually have arthritis I wouldn't rely on them too much. Mine charged too much for a 10 minute appointment where all she did was give me meds and would not discuss any other treatment or management options. She also laughed at me when I asked about a mobility device. It might just be I had a bad experience but it seems like those doctors are just given chronic illness patients cause no one else wants them.

You need to get your spine looked at. An MRI is essential. At the very least get an xray of your neck and spine. A neurologist or pain + spine doctor will most likely order one.

Neurologists will check your nerves and brain function. They'll check if your nerves are overly sensitive or unresponsive. You'll get stabbed and shocked a lot.

Pain and spine doctors are the ones who will give you pain medicine. It will not be immediate. They will need to examine you (MRI) and try other medications and treatments first. This is because insurance is not going to pay for stronger drugs until you've exhausted other options. You'll most likely start with something like duloxotine, gabapentin, prescription NSAIDs, and/or muscle relaxers. Once my results came in from the MRI I was given steroid shots in my spine. They will give them in different spots first to see which spot is most effective, so don't worry if it only works one time and not the others. I cannot stress the importance of having this type of doctor on your care team. Being able to have the power to manage my pain has helped so much. This is also the doctor that signed my form for my handicapped parking permit.

Sleep studies are expensive, but sleep is extremely important for your quality of life. So many people have sleep apnea and don't know it. CPAP machines today are really quiet and comfortable. This will be essential for tackling chronic fatigue.

An ENT doctor is only if you end up having sleep apnea or have any issues with your sinuses. I had to go and get my nose fixed because even with my cpap I still wasn't getting enough air.

You need to have some way of moving your body. Only do this after you are already on a treatment plan. It's hard to do things like exercise when you are still dealing with pain and fatigue. Doctors will want you to do physical therapy first but that's not a good idea because you won't stick with it due to pain. You need to deal with the underlying problems before working on stuff like exercise and nutrition. Able bodied young people who don't exercise and don't eat well are not in constant pain, so you shouldn't be either. If they tell you to lose weight drop the doctor, that's a cop out response.

I haven't reached the step to get a nutritionist, but changing what foods you eat and when can really help with pain management. You also may find that something you eat is exacerbating your symptoms.

With my insurance plan I can pretty much call up a doctor and make an appointment without a referral. I know some plans need referrals, so either call your insurance for one or get your primary care doctor to give you one. Idk how this works for medicare but I think you can just make an appointment with anyone who takes medicare.

I have not been able to obtain a script for a mobility device from any of my doctors. If you have a type of doctor you'd recommend for that please chime in. I've heard occupational therapists are the way to go though but still need to look into that myself.

Also do not feel bad if you cannot afford these. It is not your fault. Healthcare especially in the USA fucking sucks. This is mostly only useful for people who are in the investigative stage who have insurance. I'm not saying "oh just do yoga". Your pain is not your fault, and it can take a long time to figure out a plan that's right for you. I didn't know what doctors I was supposed to see when I started out, and was just given to a rheumatologist since there isn't a fibromyalgia doctor. I only had blood tests at that point. Hopefully this helps people save time and make sure they can fully investigate the cause of their pain (or at least how to manage it better)

[thebibliosphere]

hey! i've been following you for a while, and i was curious about how you went about getting your EDS disagnosis?? several of my doctors and OT/PT team believe i have it, but i'm not sure where to start. i have an appointment with a rheumatologist, but i know that i'm probably gonna have to bounce around specialists a lot.

the reason they think i have EDS, or joint hypermobility syndome depending ig, is bc i have hyperextended knees and elbows, and my fingers are always doin something wonky (and its getting worse. my fingers didnt used to bow like this when i was in bigh school). then, i started fucking shit up in my sleep. hyperextended and strained a tendon in my finger, and recently subluxed my shoulder completely while i was sleeping and hasnt THAT been a fun experience 🙃 combined with my chronic fatigue that showed up two years ago, they think i'm a pretty solid candidate. ig i'm just trying to figure out what kinda long haul i'm in for. i'm both looking forward to it and not. yay for answers, boo for something else wrong!

So, I'd been told for years by several rheumatologists that there was no chance I had EDS. I wasn't "flexible" enough.

As it would turn out, this was because none of the rheums I saw knew how to do a joint mobility test properly and also didn't understand that some people with hEDS can go through "stiff" periods where our muscles stiffen up to keep our joints in place. This is a process called "splinting" and can cause chronic diffuse body-wide pain that means we lose our hyperflexibility (affects muscles) but not our hypermobility (affects joints).

It was actually when I was referred to see an MCAS knowledgable doctor for my idiopathic anaphylaxis, and she reached out to shake my hand in greeting that she looked down at my hand, saw how my finger joints moved in her grasp and informed me "This is now an Ehlers Danlos Syndrome exam" that I was finally correctly diagnosed.

I still have rheums challenging her diagnosis, but every PT/ortho I've seen since being diagnosed has agreed I'm ridiculously hypermobile. Especially in my hands, neck, shoulders, and hips.

Basically, you may have to fight to have the rheum offer a diagnosis, depending on how knowledgeable they are about the Beighton scoring system, but also how to measure for it if your muscles are splinting the area. You might have some luck getting your OT/PT team to try this with you and measuring how far your joints move and getting them to write it down in their referral.

Also, ask your OT/PT team about ring splints. It sounds like they might be useful for you! Good luck. I hope you get the help you need swiftly.

[archivalofsins]

Huh- wild week so far. Well, I guess this is less about this one week and more about the past three years.

On top of yesterday, I had a disability court hearing today. Something that had been stressing me out for a while in private.

That got postponed for later due to paperwork issues. Yet at that brief meeting it became abundantly clear to the judge, my mother, my sister, a friend, and their mom-

Yep, still disabled. Most definitely.

So, let's postpone until you get the representative paperwork that is required by law as of eight days ago in because you cannot do this without one.

Then after that my sister discovered that the psychiatrist who's been purposely blocking me from disability and accommodations for going three years as of 08/17/24. This woman is literally mentioned in the court document 334 times and the document itself is a total of 375 pages. Yeah that person became a limited liability psychiatric specialist. Something that means she is protected when it comes to cases of malpractice.

Neato. Love to see a bad bitch winning, gaslight, gatekeep, get legally protected from screwing over your patients by becoming limited liability~

That psychiatrist who I have mentioned here before was mentally abusive, dehumanized/infantilized me, withheld my diagnosis forms (for several months after testing completed), tried to get me institutionalized by claiming I was suicidal because I stated I was cutting ties with her after getting said forms, and retroactively changed my diagnosis after I cut ties while claiming I hadn't done that despite the fact I sent her a formal sign and dated letter stating I was doing that.

This is the state of american mental health care if you're black. I suppose-

Yet, some know-it-alls will still go if you have x why aren't you diagnosed. Prove it go on.

I've been in what can only be referred to as Schrodinger's diagnoses since 2022 because of this one woman. This one psychiatrist. Who for all I know is legally protected from the consequences of her actions now. Like the things she actively choose to do which includes lying Social Security Administration with malicious intent which is perjury.

Something that has led to several ever postponing court hearings based on her words alone. Each time going well maybe it will be over after this. Maybe, this will be the last time. Even worse I'm pretty sure if I was still living in the city where I was born (where it's difficult to even get a mail in ballot for some people), this may not have even gotten as far as being seen by a judge.

I genuinely thought well that's just how things are for African Americans for like the past several years. Because it is this lady's actions weren't new to me when she did it yeah it was terrible but I literally said multiple times well that's just how it goes.

Until this phone call today where several people went hey these are actually egregiously horrid circumstances and this bitch is insane.

She deserves to be sued. So, at this point, if anyone tries to act like early diagnosis isn't a privilege afforded to a lucky few- They can honestly kiss my whole ass. I don't have time to explain the intersectionality of race and class when it comes to the mental healthcare one is capable of obtaining be it through school, vocation, or familial intervention outside of what I'm typing right now.

Which is the most extreme case in my circle of associates. Even my mother was like "Oh my god she never told why didn't you explain in depth." to which I went oh yeah I forgot about that like it was just a casual thing.

Because everything else is fucking outlandish the therapist before her refused to test me because I could hold a conversation and believed critical race theory shouldn't be taught in schools which dates that interaction rather well. At that point the bar was in the fucking in the fucking ground I just wanted to get tested. That's not even touching on how most people only test children for the things I wanted to get tested for which was the issue with the critical race theory shouldn't be taught in schools psychiatrist.

My current therapist the one into Milgram has been like oh my gosh I'm just happy you wanted to continue therapy- Because this literally happened while I was seeing her. The person retesting me for adhd was like oh my gosh I'm just happy you're trying again. Meanwhile my ass has been here like it's not big deal shit happens no reason to give up on seeking treatment and lose faith in psychology as a whole. I like psychology people don't always use it right but it is a truly great field of study and tool for navigating life.

Which I still believe is a fair reaction but maybe not a strong enough one considering the last person who diagnosed me literally tried to have me arrested due to said diagnosis. Then went lol there's nothing wrong with her to a court of law in order to make it as difficult as possible for me to get disability or accommodations in any way.

Also learned my visual processing is slow and it's immensely understandable I'm not okay with driving and that's been my Tuesday. I have therapy at four pm.

In short fuck people who commit malpractice~

This shit is not fun to go through but at least I'm still alive. Next year I'll be thirty dealing with the fall out of something that happened when I was literally-

This shit is impressive. What the actual fuck is my life right now? I hope this ends soon but now my family, my friend and her mom are discussing suing this woman. Because got damn this is a lot... Fuck it. It happens to others too probably I don't know any others but like if it happened to me it's happening to someone else probably as I type this because,

Sources

Forbes Advisor: Medical Malpractice Statistics Of 2024 The Law Offices Of Jaroslawicz & Jaros, PLLC: When Can You Sue a Mental Health Professional for Malpractice? Lipkin & Apter: Types of Psychiatric Malpractice

Learning a lot today. Know your rights I suppose. Well I can take solace in knowing some of the prisoners experiences with this have been just as bad. Silver linings you know it's happen to more people because it's somewhat being represented in media for once instead of blatantly fucking ignored.

[oldbutnotyetwise]

Everyday Heroes

       

     So I’ve been thinking of Everyday Heroes a bit lately.  Not the heroes who are awarded medals, or get public recognition for whatever they did, or my least favourite of all, the Social Media Hero more interested in posting their good deeds to satisfy their own demented need for attention.  I’m talking about the heroes among us, the everyday people that we might not give a second glance to in passing.  People we might see everyday but have no idea about their lives as unrecognized heroes.  Think about that for a moment, can you think of anyone who might be like that in your life?  While you are pondering that, let me tell you that I have many heroes in my life, I would like to tell you about a few of them.  

     I have always been rather introverted, in fact I often refer to myself as an outgoing introvert, which I suppose sounds strange but in my case is accurate.  I had always wanted to work at my skills as a wordsmith, but on my own I was floundering.  One day I saw that the Powassan Library had a Writing Group and so I thought I would stretch my comfort zone and attend their next meeting.  Although I found it intimidating and stressful, I recognized that I needed this push to get me to write.  So every other Saturday at 10:00 I showed up, in time I got comfortable and tried my best to assemble my random thoughts into some kind of order that might be tolerable to read and just maybe give people a few things to ponder.  We are an eclectic group of people who support, encourage and help each other do something we all love.  Although we would all probably write without the group, for myself it is belonging to this group that pushes me to write, that helped me revive a blog that had long ago grown stagnant.  Even after I was forced to move away they still let me attend via Zoom.  This group was started by Faye, she is the glue that holds us together.  Now I know she would brush it off suggesting it’s no big deal, but it is a big deal to me.  If she had not started this group I would have missed out on an incredible gift, a gift that has given me purpose and so much joy as my world collapsed around me.  Faye is one of my Everyday Heroes.

     When Robin and I made our first visit to Sunnybrook Hospital in Toronto, it was a pretty overwhelming day.  First they did a bunch of tests to confirm the diagnosis before sending us to the far end of the hospital where the ALS Clinic is located.  We sat there in the hallway looking at the club I have just joined, the one no one wants to join.  Looking around at the others waiting, knowing this is a preview of what is ahead for us, these broken people and their exhausted caretakers, and my head was just spinning.  We eventually are placed in a room where a stream of doctors, specialists and research people come and go, the day was all such a blur.  On that first day, and every visit we made to Sunnybrook there was this one person who stood out, far above the rest.  Brianna couldn’t make me better, no one could, but Brianna could help make life more bearable, and she repeatedly did.  She is my Occupational Therapist.   She was the one who in the coming months would repeatedly help me get the equipment I needed to survive and adapt to the steady decline.  It’s not just that she is so incredible at what she does, or that she is so efficient at managing so many different things at the same time, it was her compassion and empathy.  Of all the people at that ALS Clinic, she was the one that calmed our frayed nerves, she was the one who we knew cared, was truly on our side, the one we could laugh and joke with despite the dire situation.  I haven’t seen her for months, and I won’t ever see her again, but I hope she knows that she made a difference, that she had an impact on my life, and that she is one of my everyday heroes.

     Robin and I were doing our best to navigate a complicated system involving our ALS Clinic, numerous different doctors and specialists, drug companies, Insurance companies, medical equipment supply companies, Community Care with all their services, ALS Society, and numerous other organizations.  It was hard to keep track and just generally overwhelming.  Then one day we met my Killer Blonde, she was one of the two Assessors I needed to be approved by for MAID (Medical Assistance In Dying). Although she certainly didn’t have to, she agreed to take me on as a patient in her Palliative Care Practice.  She is a kind gentle soul who immediately put us at ease, despite the nature of our first meeting.  She visits with us every two weeks for an hour, actually listens to our challenges and helps us to overcome whatever we are struggling with.  She doesn’t claim to know everything but if she doesn’t know, she does find out the answer and gets back to us.  She has laughed with us, and she has cried with us. We know without a doubt that she genuinely cares and you can’t imagine the amount of comfort that brings to us as we struggle through each day.  I’m not sure how she does the work she does, caring as much as she does while caring for the dying.  There are no happy outcomes in her work,  but she can help people to a kinder, gentler death, and that is a pretty noble profession.  Dr. Celine is one of my Everyday Heroes.

     When you are diagnosed with ALS you are given exclusive membership in this elite club, a club no one wants to join, but once in, you find yourself surrounded by others in similar circumstances who understand like others not afflicted with this disease can not.  You will see people who fight this disease by advocating for the rest of us, by fundraising millions of dollars hoping to find a cure, or maybe by just offering that helping hand to others.  Some of my ALS friends have helped, guided, supported, listened, inspired and just made this intolerable journey a little more tolerable.  My fellow ALS People, you are my Everyday Heroes, thank you for helping me make it through the dark days.

     Families that include someone with ALS, well… they know things other families don’t know.  Things they can only learn through walking through the hell that ALS brings when it moves in with you.  They watch as their PALS (Person with ALS) dies bit by bit.  They watch their dreams disappear, sometimes they watch their career suddenly end as they stay home to care for their loved one.  Their once carefree life full of possibilities is now just full of medical equipment, medication, expensive bills and lost hope.  It’s hard watching the person you love die.  The caretakers are so completely exhausted struggling to go on, longing for peace and rest but knowing that only comes after their loved one dies, and that’s a high price for peace and rest.  The family members who care for their loved ones, they are my Everyday Heroes.

     I would like you to think about what that would be like to have strangers in your home, helping you get dressed, bathed and toileted.  ALS, besides robbing you of a functioning body, also steals every shred of dignity you have.  We presently accept 3 hours a week of help from a PSW, that lets Robin get out and have lunch with a friend, or maybe grab some groceries.  We are entitled to ninety hours a month of care.  Due to the many little crises that now come up every day Robin can no longer leave me on my own for very long, too many things can go wrong.  The reason I mention this is because my sweet Robin continues to do everything, the work of so many.  I assure you she has never worked so hard in her life, and that is saying a lot considering she was once the mother of four children under six years old.  She does this because she loves me, she does this to spare me having all these indignities to me being done by strangers.  What does Love look like?  Love looks like my precious Robin.  She is my very favourite Everyday Hero.

[surreality51]

My little boy turns 1 years old this week. He is a real miracle. I know people talk about the miracle of life etc etc. In his case, it really is a miracle that he is here, because we weren't at all sure he was going to make it.

(Long ass post under the cut. Warnings for discussions of pregnancy and pregnancy complications, consideration of abortion, infant medical conditions, childbirth, medical procedures/surgery, and religion)

When we went in for our 20-week anatomy scan, the maternal-fetal specialist delivered devastating news: our baby had severe heart abnormalities. There were parts of his heart she simply couldn't find on the scan, and parts that appeared to be on the wrong side. Her best guess: DiGeorge Syndrome. She recommended genetic testing and a referral to a regional specialist for high-risk pregnancies. She also gently offered to refer us to a clinic if we decided to end the pregnancy.

We took the sheet with the clinic phone numbers and walked out of the doctor's office stunned.

The next few days were the worst days of my life.

There were so many unanswered questions. Was it DiGeorge? If so, how severe would it be? Would he be able to walk? Would he be able to eat? Would he even make it to term?

On top of all these questions, there was that list of clinics sitting on our dresser and a ticking clock in our minds. Our US state allows abortions up to viability, which was generally 22-24 weeks. We were at 22 weeks. My husband and I stayed up for three nights debating what to do. We wanted this baby, but we didn't want him to live a life of suffering.

That Sunday, we went to mass as a family--us and our two girls. It was the first time we had gone since the pandemic started, our first time in three years. The girls talked about how excited they were to have a baby brother. My husband and I pasted smiles on our faces and said nothing about what we were considering.

At the end of mass, after the priest had given his final blessing and people were gathering up their things, a woman came up to us. We had seen her before at church, but we had never spoken.

"Congratulations!” she said, pointing at my round belly.

“Thanks,” I replied automatically.

“You don’t know me,” she continued, “but I remember you guys from before the pandemic. Your younger daughter was just a baby then. She’s a big kid now!”

We smiled and introduced ourselves and our daughters.

“Are you having a boy or a girl?” the lady asked.

“A boy,” my husband replied.

“How nice! I have three boys. This is my youngest,” she gestured to the young man beside her. He was taller than her, but they shared the same dark hair, mocha-toned skin, and broad smile. She patted him on the arm. “He’s home visiting during spring break from college. They grow up so fast.”

He waved hello.

Then she turned toward us, smiling kindly, and said, “You’re going to have so much fun."

We thanked her and said we hoped to see her again next time.

I didn’t think much about the exchange, as we had to get the girls some lunch and then go grocery shopping, but later at night after the kids were asleep and my husband and I were getting ready for bed, he turned to me and said, “I think we’re going to be okay.”

“What do you mean?” I asked. It had only been four days since the diagnosis, but those four days had felt like four years. I was still feeling like our whole future as a family was teetering on the edge of a great unknown.

“I think everything is going to be alright,” he said, “because of what that woman said. Did you hear? I was praying last night for God to send us a sign, show us the right path, whether it’s to continue on or to abort. Just show us which way to go. And then today a lady who has never spoken to us before, and hasn’t seen us for years, suddenly feels compelled to come up to us in church with her third son and tell us that we’re going to have so much fun with our baby, who is our third kid and is a son. She didn’t have to do that. There was no reason for her to approach us, she's never come up to us before, she doesn't even know our names. But something pushed her to speak up in that moment.”

I stared back at him, dumbfounded. I don’t know much about God or fate (he's the one who is religious, not me), but sometimes things are just a bit too on the nose to be a coincidence.

Ten days later, we got the first part of our genetic testing results: no major chromosomal abnormalities. A week after that, detailed scans with a specialist confirmed the severe heart defects, but no other visible defects.

Two weeks later, the rest of the test results came back: no DiGeorge Syndrome.

Our baby was going to make it.

-----------------

It wasn't all smooth sailing after that. There were still a lot of questions about his heart defects and how they would affect him. In all, the fetal cardiologists identified 10 things wrong with his heart. Usually they can show a standard anatomical drawing of a heart and point to what was wrong; with our baby's heart, they had to hand-draw what his heart looked like, because there were just too many abnormalities. It was that far off from a normal heart.

The craziest part was that he was still alive and growing. It took the fetal cardiologists--specialists who are part of a nationally ranked children's hospital and who see complex cases every day--nearly two hours to figure out how our baby was still getting oxygen circulated when his heart was so fucked up. (Usually a diagnosis takes 45 minutes.)

It turns out that his defects are a case of "two wrongs make a right." For example, he is missing his pulmonary valve (pulmonary atresia). This is Bad, because the pulmonary valve and pulmonary artery are part of what connects the heart to the lungs. No pulmonary valve or artery means the heart can't pump blood to the lungs to pick up oxygen. It can also lead to a weakened, underdeveloped right ventricle because no oxygen is going to that side of the heart (Very Bad). BUT, if you happen to have a hole in your heart wall (ventricular septal defect), then that hole acts like a back door for the blood to flow from the left ventricle to the side that's not getting any oxygen (right ventricle).

In other words, usually having a hole in your heart is Bad and can require open heart surgery to fix, but in this case is Good because it is a workaround for the missing pulmonary valve.

Of the 10 things wrong with his heart, about half of them are workarounds that happen mitigate the other, more serious defects. The surgeon said that his heart is messed up in exactly the right way for him to survive.

It's amazing--miraculous, even--how the human body can adapt to survive.

-----------------

Despite reassurances from the doctors that our baby would most likely make it to term, I was incredibly nervous that he would be born premature or stillborn. At the same time, I didn't want to induce labor early because my husband and I believe that babies will be born when they're ready and it's generally not a good idea to induce labor unless you have to. But the doctors wanted to schedule an induction because they didn't know what our baby's condition would be at birth--would he be able to breathe on his own? would his circulation adapt to being outside the womb? They usually schedule an induction so they can ensure the whole medical team is available when the baby arrives. (i.e. so the baby doesn't come on a Tuesday and require emergency surgery but the head surgeon works at a different hospital on Tuesdays)

We didn't even have the option to pick the date, it was just whatever day during week 39 when the whole medical team--my OBGYN, the neonatologists, the respiratory specialist, the cardiac interventionist, and the cardiac surgeon--were available. Our case manager told us that we would be notified when a date was selected.

Funny enough, the one date where all the schedules aligned was August 8. (Federer's birthday)

Still, as the induction date approached, my husband and I felt conflicted about essentially evicting our baby from the womb. But we understood that it was about logistics and we didn't really have a choice, so we mentally prepared ourselves to show up at the hospital at 10am on August 8 for the induction.

The night before we were supposed to go in for the induction, I started feeling some tightness in my lower back.

"Haha, wouldn't it be funny if he decided to come on his own on August 8 anyway?" I said.

"'You can't evict me if I come out first,'" agreed my husband.

Two hours later, the tightness in my lower back hadn't gone away and in fact had started to spread to my lower abdomen.

"Hmm...maybe I should go shower right now," I said, remembering that I was too tired to shower for 48 hours after my second kid was born.

The first contractions started at 1am on August 8.

We headed to the hospital around 4am. He arrived on his own at 12:10pm.

————————————-

[My father told me a few weeks afterward that someone must have been watching over my baby, because we almost didn’t get ahold of my mom when I went into labor.

The plan was that I would call her when I went into labor so she could come watch my two girls while my husband took me to the hospital. (Just my mom; my dad was useless with me as a child and I wouldn’t trust him to watch my plants, much less my children.) But sometimes her cell phone reception at home doesn’t work and her phone goes straight to voicemail without ringing. It happened again when I called at 3am on August 8. I tried three times, getting more frantic with each call. Finally I called my dad’s cell phone.

He picked up on the first ring.

He later told me that he had woken up for no apparent reason and had picked up his phone to check the time. It was 3am so he was about to go back to sleep when he saw my call. His phone was on silent and he’s a deep sleeper, so if he hadn’t randomly woken up at that exact moment, he wouldn’t have seen my call nor gone to get my mom.

My dad is not religious, but he told me that someone must’ve been looking out for me and my son that night.]

—————————————-

The delivery was the smoothest delivery of my three children, and I take that as another sign that someone was watching over him and me. As soon as he was born, the medical team was all over him. I got to hold him for a single minute before they took him, because given his heart anatomy, there was a small but real chance that he might not get enough oxygen to his brain or body and turn blue, in which case they would need to start emergency measures immediately. My husband and I knew this going in, and my only hope was that he would be alright and I could hold him, if just for a minute.

He came out beautifully, and my OB placed him in my arms and I got to hold him, touch his little hand, and tell him I loved him before they took him to the ICU. My husband went with him, as was the plan. I was wheeled into the recovery room alone.

With my first baby, I had a level 3 tear and could barely walk for a week after delivery. With my second, I had minor tearing but the anesthesiologist messed up the epidural and so I was laid low with an epidural headache for a week. This time, the delivery was so smooth that I had no tearing at all. I was up on my feet within 24 hours and discharged.

It was a lucky thing too, because I wanted to be with my baby. Most hospitals are not equipped to handle babies with such complex heart defects, so the plan was to transfer our baby to the children’s hospital within a few hours of birth, as soon as he was stable enough to be transported. By the time I was discharged, he was already there. My husband stayed with him the whole time and only left to pick me up and drive me over.

I feel like whatever higher being was watching over us knew that I needed to be there with him too, so they gave me the smoothest delivery possible so I could be on my feet and get over to the children’s hospital as soon as possible.

(I’m sure it being my third baby and not my first probably helped too.)

—————————————-

Being a parent is scary enough, because you hold this little being’s life in your hand and all you can do is hope you don’t fuck them up too badly.

Being the parent of a baby with complex congenital heart defects is fucking terrifying.

On day three, our son had the first of his three planned open heart surgeries. I will never forget the helpless terror of knowing that doctors were going to cut my baby open and do heart surgery on him at three days old. They tell you about the risks and potential side effects or complications before asking you to sign the consent form. The risk of death was low for the procedure, with a 98% survival rate, but 1) we already knew that percentages suck because the chances of having a baby with congenital heart defects in the first place is about 1% and pulmonary atresia occurs in about 1% of that 1%, so we were already screwed by percentages, and 2) the bigger risk is that he would get a stroke or brain bleed or something from being put on the heart-lung bypass machine. They tell you not to Google the chances of complications from the bypass machine, but of course you do, and then you can’t unsee that the risk is somewhere between 40% and 70%.

FUCK.

But you have to sign the forms and let the doctors do their job, because if you don’t do the surgery and risk the bypass machine, the risk of your baby dying from their heart defect is probably 100%.

The hardest thing is knowing that everything is out of your hands, and you just have to pray or hope that your baby comes back to you alive and whole.

I remember seeing him afterwards, with all of the tubes and lines coming out of him and machines beeping everywhere and a gigantic ugly cut running down his chest with stitches holding it closed, and just bursting into tears, because he was so tiny and had to go through all that, and if I could have taken his place, I would have. But this was the hand he was dealt.

I cried again when he opened his eyes and saw us two days later, but this time it was tears of relief, because I could see in his eyes that he still recognized me. He was still in there. He was still whole.

——————————————-

We were discharged from the hospital in mid September, just before my husband’s birthday. It was the best birthday gift ever, and a cause for celebration. But the months following were not easy. Besides the normal challenges of juggling three kids and surviving newborn boot camp, there were the additional challenges from his medical needs:

He was on oxygen support 24/7 because his oxygen saturation levels would drop without oxygen support. He had to wear a nasal cannula all the time, and if he pulled it off, we basically had a few minutes to get it back on him before he started turning a little blue (spoiler alert: babies are very grabby, especially when they have something taped to their face)

If we wanted to go anywhere with him, we had to bring his portable oxygen tank too. The oxygen tank has about 3 hours of oxygen, so we always had to bring a backup too. We were always on a timer for when we had to switch him to the backup tank or make it home in time to hook him up to the oxygen concentrator. My recurring nightmare was that we got stuck in traffic or caught out somewhere and his oxygen ran out and I would have to watch him die before the ambulance arrives. He was on 7 different medications, including 2 breathing treatments that had to be administered twice a day with special equipment. Some medications were twice a day, some were three times a day, some were every 8 hours around the clock, and you cannot forget or mess up the medication schedule. This was on top of feeding him every few hours and doing all the other things for our older kids so they don’t feel neglected. My husband and I joke that we must’ve had it too easy with our first two kids so this time we had to play on hard mode.

————————————-

In February of this year, we got the call we had been waiting for: our son’s second surgery was scheduled for the 12th.

We knew that his second surgery would be somewhere when he was 6-9 months old. The first surgery at 3 days old was to install a shunt, which is basically a connection that allowed him to get blood where it needed to go despite having no pulmonary valve. It was a workaround that would allow him to leave the hospital and grow until he got big enough for the doctors to do the actual repair of his heart. It was never meant as a fix for his conditions, and he would outgrow the artificial shunt somewhere at 6-9 months.

In December, we started noticing his oxygen levels dropping. In January, they were sometimes as low as the 60s. (Normal people are at 95-100% oxygen saturation. His normal target was 75-85%. Anything below 70 was bad.) I wasn’t sure if he was going to make it to his surgery. We watched him anxiously as the day approached, fingers crossed.

The second time is not any easier than the first. This was a complex surgery that would be done by the head surgeon; the first surgery was more routine and was done by one of the other surgeons on the team. Our surgeon was renowned in his field; he even had a procedure named after him. It heartened us to know that we had the best surgeon on our case; it also meant that our case was so complex that only the head surgeon could do the fix. When we asked him how many cases like ours he saw, he said “two or three per year.”

This is a surgeon who does multiple surgeries a day in one of the busiest hospitals in the country.

At least he had seen cases like this before.

The game plan going in was to either do a full fix (anatomical repair) or a workaround (physiological repair). The surgeon said he wouldn’t know which option to do until he got in there and saw with his own eyes what the situation required. Basically our baby’s heart chambers formed correctly (4 chambers in the right place and good size) but all of the major and veins are connected on the wrong side. Veins that are supposed to be on the right side are instead on the left. The aorta comes out of the right ventricle instead of the left as normal. The pulmonary artery, which is supposed to come out of the right ventricle, is straight up missing. So the surgeon could either make the connections go the right way, or make the heart go completely the wrong way. Either option was better than the current half right (chambers are correct) and half wrong (connections are on opposite side). We needed either all right or all wrong.

The risks with the surgery were also greater, because it would be a longer procedure and that meant more time on the bypass machine. The longer you’re on the bypass, the higher the chance of complications like stroke or brain bleed. This was a very long procedure.

The wait in the waiting room is a special kind of hell, because there is nothing to do but wait and think about all the things that could go wrong. When we asked about the risk of our baby dying during the procedure, the surgeon said 15%. When it’s your baby’s life on the line, 15% seems very far from 1% or 0%.

We were told that the surgery would be done around 11am and the surgeon would come to the waiting room to tell us how it went. By noon, he still hadn’t come, and I was trying not to panic that something had gone wrong. Finally he comes at nearly 1pm, almost two hours late, and tells us that our baby’s surgery was successful but they couldn’t do an anatomical repair. They had to do plan B, physiological repair, and make his half-wrong heart all the way wrong. Doing so was actually easier because the heart kinda wanted to go that way anyway, so apparently he got done early and jumped to another surgery. That’s why he was nearly two hours late coming out.

🤦‍♀️

Anyway, so my son has a backwards heart. His aorta is connected to his right ventricle instead of his left, and his pulmonary artery is connected to his left ventricle. The veins connected to his right and left atria were already switched at birth. Most people collect deoxygenated blood in their right atrium and pump blood to their lungs from their right ventricle, then the oxygenated blood comes back from the lungs into the left atrium, and the left ventricle pumps it out to the body thru the aorta. My son’s heart goes the other way: the left ventricle pumps to the lungs and the right ventricle pumps to the body.

You wouldn’t know it by looking at him now. He looks like a normal, happy baby. He loves to eat strawberries and watermelon, loves when his dad reads to him, and loves watching his older sisters. He turns one years old this week, on August 8. We weren’t sure when he was born if he had 6 days, 6 months, 6 years or 60 to live. He’s made it past the first two milestones; chances are pretty good that he’ll make it to 6 years. (Because of his backwards anatomy and the fact that the right ventricle is not designed to pump blood out to the body, there is a 15% chance that he’ll have heart failure and need a heart transplant at some point.)

I don’t know how long we have with him, but I’m grateful for the time we’ve been given so far and will take it one day at a time. He is a true miracle, my baby with the backwards heart.

[spencerrscardigans]

Doctors often tell patients, often chronically ill patients to stay off the social media that talks about their illnesses and to not look stuff up, and i can understand why this may be problematic but they also aren’t taking into consideration the positives and good things that can also occur from this.

POTS and other chronic illnesses are having a higher social media presence, and because of this it’s created quite a big stigma surrounding it, and people often think that these illnesses are just becoming a trend, but they don’t understand how helpful the representation is for so many people.

I do often see people in the comment section of these videos who will have one or two traits and immediately panic thinking they have these things and i can understand how that part isn’t great, but in some cases it actually is these posts online that help people get diagnoses and learn more about themselves.

I would not have been diagnosed with POTS and getting treatment if it weren’t for social media, and my doctors don’t know much about POTS so most of the tips and advice and treatment methods that i’ve found have been from social media, and i would not be where i am without it.

I struggled with dysautonomia for my entire life, and it had been established by my one doctor who actually knew about these conditions but he retired and the new doctors i was switched too don’t know much about my health conditions, so getting diagnoses and treatment has been a very slow process.

My dysautonomia is believed to have turned into POTS in early 2021 after i got covid, and for over a year i was struggling with debilitating symptoms and had no idea why. I was just trying to survive high school, and all the sudden i was getting sicker and sicker and it was causing quite the divide socially.

I had been diagnosed with fibromyalgia, and because of it i had already been limited in my physical activity, so i was just told that my POTS symptoms were because i was out of shape.

I tried to push myself to fix this, which only ended up making me feel worse. Sometime along the road of me trying to get more active, i got a fitbit.

I started using my watch to monitor my steps and sleep, and i noticed that my heart rate would shoot up to the 150s-170s when i was simply standing still, so i sat down, and my heart rate immediately dropped to the low 100s.

I thought that this may be a glitch with my watch, but was still concerned as i was aware that my heart rate should not get that high from just standing still, so i started googling. As a result of my search, the name Postural Orthostatic Tachycardia Syndrome came up. I did some reading, and noticed that a lot of the signs were pointing to me, especially with the already established dysautonomia.

I had already dealt with a lot of doctors telling me that i was just paranoid and a hypochondriac, and i knew that watches sometimes glitched or didn’t work correctly, so i went to my pharmacy and got a pulse ox, and did the same standing test and it did the exact same thing as my watch.

I took pictures of my heart rate and started recording it on the charts that my watch had, and brought it to my next doctors appointment, explained my symptoms and then mentioned that i had heard of the condition POTS, and that it seemed pretty similar to what i was going through. My doctor had my do a short standing test in the office, and i had a 70bpm increase in my heart rate.

My doctor agreed that it definitely looked like POTS and she said that i met the criteria for a diagnosis, but she said she didn’t know very much about the condition and had only briefly heard about it, so she referred me to a cardiologist in another city as that was the closest specialist to me, but they denied the referral and said that they weren’t taking patients with POTS, and they gave her a information sheet and gave her some tests to do to rule out anything else.

The tests came back, and again it all pointed to POTS, but my doctor was scarcely familiar with the condition, and wasn’t comfortable giving me an official diagnosis, so she gave me an informal diagnosis. When it came to treatments, she also wasn’t familiar with anything besides telling me to drink more water, exercise, and increase my sodium intake, and the only medication she was familiar to treat it with was propranolol, so she prescribed that, but it unfortunately didn’t help much, so i wasn’t left with much help or advice.

The things my doctor recommended weren’t enough, and because i didn’t have an official diagnosis or really any information at all from my doctors it was hard to get accommodations with school, and i wasn’t sure what else to do, so i did what doctors recommend against and went to google and social media.

It was then where i found so many people like me who i could finally relate to, and found so much information about my condition and tips and tricks to help manage it.

Because i finally knew more about how to manage my POTS, i started trying out more things and in the last year i have learnt more than i had in years of going to doctors, and i also finally had a community where i felt less alone.

I was able to advocate for myself, and two years later, this february i finally got in to see a cardiologist and now have a proper diagnosis, and he was able to provide some more insight and treatment options for me and i’m finally starting to notice some improvement and have a hopeful plan for the future.

In cases like these, social media representation of chronic illnesses is not always bad, and can in my opinion, actually save lives. If i had not had access to these communities and help, i genuinely can say that i would not be where i am at today, and i am forever grateful for the communities that have been created.

[surrogacyagencykenya]

My Own Experience with Same-Sex Surrogacy in Kenya!

Most surrogacy specialists have differing ideas about same-sex surrogacy in kenya, and this issue has always drawn discussion. A few people refer to it as a safe refuge for same-sex parents seeking surrogacy, while others express worries about the lack of surrogacy rules in the nation. But for me, the experience of using same-sex surrogacy in Kenya has been significant and transformative. 

My partner and I, as a homosexual couple, decided to go on this road in order to realize our desire of having a child. I will recount our tale in my blog, starting from the early difficulties we had and ending with the joyous day when we finally received our kid in our arms.

Making an informed choice!

It all began with a strong desire to establish a family. In addition, my girlfriend and I had been dating for a few years when we both had strong parental desires. Either way, we were aware of the social and legal obstacles that came with being a same-sex relationship. Furthermore, we started looking into our possibilities because we were aware that gay surrogacy in Kenya may be a drawn-out and dubious procedure.

Surrogacy seemed to be the best option for us, but we were unsure about the legal and social views, especially in a country like Kenya where LGBTQ+ rights are not widely accepted.

Getting through the challenges!

Finding a surrogate mother who was willing to cooperate with a same-sex couple was one of the initial worries in this area. In Kenya, surrogacy was not well-informed or supported, so we had to rely on private associations and internet forums to connect with possible surrogates. Furthermore, it took us months to find someone who understood our situation and was ready to help.

The legal barriers were similarly formidable. Furthermore, there were unclear legal guidelines governing same-sex surrogacy in Kenya. We also got in touch with several family law attorneys, and they advised us to create a thorough surrogacy contract in order to protect the interests of both sides.

Handling the emotional aspects!

The emotional conundrum arose after we had settled on the legal positions and located a willing surrogate. Having said that, we developed a strong relationship with our surrogate and she became an important part of our lives. Also, when we took fertility drugs and awaited the results of the pregnancy test, the overwhelming feelings of expectancy, trust, and unease.

However, there were also happy and inspiring moments when we learned that our surrogate was expecting a child. Anyway, while we discussed the instabilities of pregnancy and labor, there were also times when I felt uneasy and afraid. Throughout the voyage, we relied on the support of our chosen family and companions and clutched each other's hands tightly.

Our child is finally here!

We were overcome with joy on the day of our child's birth, which was a turning point in our lives. It was also an amazing sensation to be in the delivery room, watch our baby breathe, and hug them for the first time. Furthermore, our surrogate had bestowed upon us the most priceless blessing we could possibly get.

However, there were difficulties involved in surrogacy for same-sex couples in Kenya who chose to become parents through surrogate pregnancy. That said, we encountered opinions and preferences from a small number of people in our neighborhood as well as from medical professionals. Still, the affection and encouragement we received from our loved ones and relationships outweighed the pessimism.

We fully embraced our responsibilities as fathers, providing our child with a nurturing and loving atmosphere. In addition, we discovered how to balance job and family obligations, and every day presented fresh opportunities and difficulties. Regardless of sexual introduction, parenthood may be a learning and growth adventure.

Making it through with the legal battles!

The most notable obstacle we faced following the birth of our child was getting official recognition as guardians. Due to the illegality of same-sex marriage in Kenya, our parenting rights were problematic. Furthermore, we were aware that we would need to defend our child's legal rights and ensure that they would have the same legal protections as other children.

We further partnered with LGBTQ+ organizations and legal experts to advocate for legal recognition and communication. In addition, the battle was exhausting and protracted, with many setbacks and disappointing times. Whatever the case, we persevered surrogacy for gay couples in kenya thanks to our confidence and the community's support.

We achieved a victory when Kenya acknowledged our parental rights, following a protracted court battle. Furthermore, it was a turning moment for LGBTQ+ rights in the country in addition to being a personal victory. Additionally, other same-sex couples wishing to become parents through gay surrogacy in Kenya now have a clear path to follow because to the precedent our case created.

Final words

My own experience with same-sex surrogacy in Kenya has been a life-changing one. Every decision we made, from the initial decision to become parents to the difficulties we encountered along the road, helped to mold us into the loving and adaptable family we are today. Our experience might also serve as evidence of the value of affection, assurance, and the encouragement of a supportive community that values communication and recognition.

In sharing our story, we hope to inspire others who may be confronting comparable challenges and inspire them to seek after their dreams of parenthood, notwithstanding of their sexual introduction.

[balkanradfem]

Cardiology is... Very connected to other fields, so it's simply if you don't have more specific specialists in your area, chances are a cardiologist will know what to test for and who to go to, at least in a very generic direction. But it's especially connected to rheumatology. Although if you have a traumatologist that could work just as well, but in a town (tiny) where I live a clinic didn't have one and still doesn't, so I just went to a cardiologist to refer me to another city and she was pretty good.

The way you're describing it you definitely have chronic pain imo. I think there's a very harmful ableist narrative in our society that if the pain seems to have a cause it's not "actually" chronic as if chronic pain just appears out of nowhere which is not true, but just suck at figuring out the diagnosis. Chronic pain is any pain that lasts for a long period of time, case closed. Even if you broke your leg and it fully healed and it still hurts you'd still have a pain that is chronic, for example. Triggers for pain are very common too, it doesn't have to be present all the time, in fact in a lot of chronic pain patients it doesn't. Still counts especially if your pain prevents you from functioning fully (I'd even argue it qualifies as disability to some extent, but I'm not a medical professional)

Not inflammation (although you can't rule out anything without tests), but like I said, nobody expects, or nobody SHOULD expect patients to know what's going on all the time, and there's no moral failing in visiting a wrong doctor for your pain because all healthcare is trial and error until you figure out the final diagnosis. Showing up to a vaguely correct doctor (or a general physician, if you have one) with a generic "hey there's something wrong, can I get help with it?" isn't malicious at all and is better than self-diagnosing in almost every case.

That said doctors can be and usually are shitty about it, especially chronic pain + misogyny combo (I've been chronically ill + disabled since around 8 years old, and I've only met two to four doctors that actually taken me seriously and gently and didn't shame for being in the state I am), so I totally understand not wanting to go through all that hassle and potential medical trauma lmao.

On that note maybe try looking into over the counter muscle relaxant?

Oh I love what you wrote here!

I never considered this pain a chronic type, but what you're saying is absolutely true, it is just a descriptor for pain that lasts for a long time. I'm sorry if my perspective on it was wrong! It's completely true that chronic pain can be caused and triggered by physical issues.

You're right about doctors too, my doctor seems to just be annoyed with me repeatedly showing up and not getting any better even after being checked out by two physio-specialists. I'll talk about it to her the next time I'm in and see if I can get a referral!

I did get a muscle relaxant medicine, and it does take the pain away temporarily, I will take it if my pain gets irritated (like if I'm in a situation where I have to run a few steps, that will cause me intense pain if I don't take the relaxant afterwards). But it's not something one could safely take for a long time and I ended up having some bad side-effects from it, so I'm mostly avoiding it.

[jjoelswatch]

Big ol' health rant under the cut.

I'm beyond frustrated with my care team and how hard I have to advocate for myself to get tests/labs done.

I've been not feeling well symptomatically for over a year, and been dealing with lack of appetite issues for about three years. Started with right side stomach pain last August that led to potential gallbladder issue concerns. I had every test under the sun to rule it out (abdominal ultrasound, upper scope, HIDA scan, stool sample) and everything came back okay aside from some inflammation (no H. Pylori, no celiac, no gallstones, no ulcers-- gallbladder, liver, pancreas, etc function all normal). So it was just like "well okay, I guess nothing's wrong with me except that my right abdomen hurts from time to time" and I tried to move on with my life.

I started having strange neurological symptoms back in March of this year (tingling/numb sensation in my face, strange senses of touch in parts of my face-- like parts of my face felt like a balloon). I've always suffered from ocular migraines with aura and no pain (and flashes of light/visual snow), so I thought it was just fun new migraine symptoms. They went away for a few months then came back in full force with even more fun symptoms (tingling in my hands and feet, lack of sensation in my right leg but not total numbness, a gradual increase in forgetfulness/short term memory issues that are SO not the norm for me, middle back pain??), so I scheduled an appointment with a neurologist and went to my shitty CNP "doctor" (disclaimer, CNPs are not doctors despite how the American healthcare system treats them like doctors) and basically pleaded with her to run bloodwork on me and to try to do anything to get me into for brain scans or something. Because weird neurological symptoms are super scary and it's hard not to assume the worst when you're experiencing them fairly suddenly.

She ran my bloodwork and found that my B12 levels were really low. I learned that B12 can cause literally all my symptoms, so I was relieved and they put me on 4 weeks of weekly B12 injections, with the plan to start monthly injections afterwards. She also told me they were going to test my bloodwork for folate levels and talk to one of the doctors in the practice to get to the bottom of what's causing my deficiency since I wasn't anemic or vegan/vegetarian. I felt...hopeful? and like we were headed down the right path.

Well, the office failed to click "submit" to order my blood to be tested for folate. So my CNP couldn't work with the other doctor to try to puzzle out what's wrong with me.

I was feeling pretty good during those 4 weeks of injections. My memory was sharper and my symptoms were gradually reducing (there is apparently something called "nerve wake up" when dealing with neuro issues from B12D, which can still cause symptoms to show). I knew that recovery would be gradual, as it can take 6 months to a year to really recover from neuro damage/issues from B12D, so I tried to stay positive. But a week and a half out from my last weekly shot, my symptoms returned with a vengeance.

Now my symptoms are a right leg that wants to cramp up from hamstring to calf, a left toe that just...twitches of its own accord, other random muscle twitches/tenseness, and (possibly unrelated?) increased acid reflux issues. My neuro appointment isn't until the first week of October (because the US sucks and it literally takes 5-6 months to see specialists at the bare minimum), so I messaged my doctor in a bit of a panic with some questions about my symptoms and asking if we could more aggressively treat the deficiency, because like...I'm concerned about perma nerve damage at this point?? And she tells me she's going to refer me to a neurologist without answering any of my other questions or trying to see me any eariler.... If she'd looked at my file or remembered our last conversation, she would know that I already have a appointment with one.

I caved and did several things. I tried to switch to the other doctor in the office she said she was going to work with to get to the bottom of my issues, because...why not go straight to the source? That failed, as the practice "doesn't do that, as a rule" which like...okay? Desperate for relief, I started sublingual supplements of B12 (fucked up at first at did the methyl version which just didn't agree with my body and switched to the same form as my shots were). I started seeing some relief in my symptoms, including my muscle tension in my leg (which was previously causing me to have trouble walking) and some of my muscle twitching.

I also called the neurologist's office like, "listen I know you guys haven't seen me yet, but can you order some scans to give me some peace of mind?" and they finally agreed to send me in for a cervical spine MRI and an EMG. I did the MRI only to find out that the reason they had me down for one was "neck pain" which I've literally never said I had and they didn't include a brain MRI like I'd expected given my symptoms. MRI turned out fine, which was a relief as much as it was kind of expected. The EMG is yet to be done (on the 28th).

I finally had my appointment with my CNP on Monday for my first monthly shot and to do labs, including the folate lab they screwed up. I told her that I wanted her to run labs for the missed folate, iron, vitamin D, magnesium, and copper. She sort of...laughed at me?? and told me that we ran those labs already. I told her to look at my chart because we didn't, and she obviously had to walk back her sentence and was like "I don't think we need to run labs for vitamin D but we can if you want?" and of course I said that I did. She refused to run labs for magnesium because that was "a more serious lab" and then said she "didn't know how to even test for copper because that's a heavy metal". I get my labs done, get my first monthly B12 shot. She sends me on my way with "depending on how your labs turn out, we'll see if we need to continue B12 shots"...when it can take a year for my symptoms to correct themselves.

Go figure~ my labs come back - the labs I had to TELL her to order for me - and out of a desired 30+ range for vitamin D, my level is 7 lmao. Thankfully I still am going to be getting monthly B12 shots since my levels are higher (due to self-treating) but still low. I also have to take vitamin D and a multivitamin now. She also referred me to a hematologist because I brought up the MTHR gene that can affect B12 absorption since I'm not anemic or vegan. I just want to know what's causing this deficiency, because she seems to have dropped the ball on the matter altogether.

I'm close to a week out from my last shot now and my muscles are getting tense and twitchy again. It's so, so hard to sit here and tell myself that this healing process is just going to take time-- trying to reassure myself that my muscle twitching is just "nerve wake up" and not a sign of something much worse. I've been going quietly crazy worried about ALS, Parkinson's, or MS because these deficiencies can mimic their symptoms. I just want it to be the 28th so I can get my EMG done and over with, and then see my neuro on the 2nd of October. I so tired of going to the doctor. I'm tired of feeling like they don't take me and my symptoms seriously. I'm tired of feeling like an annoyance. I'm tried of having to go out and do my own research and then bringing that research to my doctors, because between the two of us, I don't have a fucking medical degree. I'm tried of hearing "don't consult Dr. Google" when what else am I supposed to do when you're not doing your job thoroughly?

I'm just tired and I want to feel better.

[skywarpie]

I hope you can get better medical care! It sounds really exhausting... hopefully, they start listening and helping you... can you get a different doc? Or do the thing where you ask them to write down in your file that they've refused to run tests/refer you to a specialist/etc? Sometimes that gets them to finally do their fucking job...

I'm sorry you're going through this, for a while before I got diagnosed with my chronic illness (which is not super severe but still not fun) my doctor kept saying everything was fine and normal til I finally got to see a specialist who was like actually these are all clear symptoms of X and I was like "oh so im not crazy" and she was kinda taken aback but damn some docs just make you feel crazy so idk I was starting to believe it... so I really hope you can get better care because nobody deserves to be sick and ignored, honestly 💗 I'm sending you good vibes sorry this was so long I just wish u good luck 💗

I could but the problem is finding someone who will accept my insurance. Since I had to go through the whole affordable Healthcare system most places aren't affiliated with the organizations which sucks bc my plan says I have no fees whatsoever. But this would cause me to have to pay massive fees. 🙃

I'm to the point I'm just exhausted. Like my knees literally locked up the other day which is new so that's fun. I just don't want to feel nauseous anymore

[orangepunkwitch-blog]

Where have I been?

I will try not to get into too much detail (considering this is a witchy blog; I originally wanted to get into the super-detailed stuff in my main blog) but a LOT has happened since 2018!

If you’re a new follower: hello there! You likely haven’t seen much from me in recent years because I migrated from tumblr in 2018, only to make a friggin’ back-up account because I needed to vent about stuff, lol. But I’ll be posting more frequently now! Especially since I saw this post the other day, which made me come back here. 

But first, to the old followers: we got catching up to do.

I should note that any followers who followed me to my Mastodon account saw me sort of drop off from there but I’ve been more active on there the last few months.

CONTENT WARNING: I will be talking about some health-related trauma and there will also be mentioning of ED for the next few paragraphs. I’ll signal the end of that with all caps bold-italics.

2019 was the year my body decided to... ramp up the pain. From the tail-end of summer onward, I had developed health issues that affecting my colorectal areas, complete with rectal cramps, but all on one side. Eating was becoming difficult for me, as I had to do everything I can to avoid constipation as my chronic anal fissures worried me. It was to a point that I actually got a cane, and I ended up skipping eating at all except for dinner on my first two days of my period. This continued into 2020 as my high metabolism made me slowly drop in weight over time to a point where I was really underweight. But that pain on my period that caused me to use a cane because I thought I had some sort of.. growth or something pressing on my sciatic nerve... That’s what kept making me constantly adjusting my diet. But it’s hard to eat when the pain eliminates your appetite or makes everything come back up and you nearly collapse from exhaustion.

April 2021, I had an anal fissure that, while not very painful, had a considerable amount of blood that warranted my very first ambulance right to the ER. I’m fine, but I had blood tests done just in case it was Crohn’s. It’s not. I was recommended a gastroenterologist, who at first recommended a colonoscopy, but I begged for something less invasive (my first CT scan!). And he was glad I did, because I had a golfball-sized cyst on my ovary that was pinching and pressuring my large intestine, as well as creating pressures everywhere else.

He referred me to the best gyno I’ve ever met. Upon meeting him, he immediately told me, “I want to perform surgery on you as soon as possible.” He also went, “While I’m in there, did you want your tubes removed?” Like.. no questions. This guy was fucking awesome. I felt like a person to him (the gastro-doc was cool, too!)

September 2021, I got surgery. This gyno specializes in ovarian cancer, and that’s what he was afraid of. But lo and behold, it was not cancer! The cyst was chocolate in color!

It was endometriosis, confirming my decade-long suspicion.

He told me that the cyst was sticking to my bowel, and he gently pulled it loose, but saw no other signs of it anywhere else in me. He wasn’t a specialist, but he knew what to watch out for.

I ended up losing the ovary. But post-op recovery was a breeze. I didn’t need painkillers, and that still freaks my husband out, lmao.

2022 saw me going to seek a counselor for a few things (abandonment issues, trauma related to health issues, as well as being assessed for Autism, which I’ll get to that last one after the content warning bumper at the end here), and the counselor I ended up seeing was some... I guess religious lady who specializes in eating disorders. By this point, I knew I was underweight and was trying to get a hold of the right doctor to get that taken care of, but despite telling hr of my health issues, she kept insisting I was anorexic.

Meeting after meeting, she refused to listen. She did everything but tell me directly that she didn’t believe me. She invited my husband to come in on the last meeting, to which I agreed, and when he took my side, she immediately ignored he existed. And I’m still messed up from her.

I saw a nutritionist who recommended a nutritional shake intended for gaining weight and such, but she also acted like I had an eating disorder, begging me to “just eat more” and eventually told me, “I don’t know how endometriosis affects how you eat.” The only silver lining is these shakes do the trick.

I am gaining weight, just not at the rate people would like me to, but I’m DEFINITELY making progress. It’s just a high metabolism has ALWAYS made weight-gain so difficult to me.

OKAY, THIS IS THE END OF THE TRIGGERING STUFF. I APOLOGIZE. THE REST SHOULD BE FINE. IF NOT, PLEASE LET ME KNOW.

I’ll keep this bit brief, but I’ve discovered that I’m Autistic! I’ll keep it to only self-diagnosis, as if I had an official one, that could rip all sorts of rights away from me here in the US. I’ve got a mouth on me, so someone (anyone, really) could use such a diagnosis against me if they wanted (such as having me involuntarily committed, abuse as a patient at any medical facility, etc.) Figuring out how my own mind works has helped me a lot to a point where my husband says my mood has significantly improved.

And now, the important part relating to this blog: my practice.

This is... a lot. So I’m going to sort of keep it short because I definitely want to make more detailed posts on some of this.

I’m of Serbian descent; I’ve had the most cultural exposure in my family to Serbian Orthodox practices (it wasn’t a whole lot, because I guess my dad (who is where I get my Serbian heritage from) wanted me to be “normal” or something... the guy wants to be plane white-bread ‘Murican and tried to make me like that, too, basically), and after realizing how much of stuff in general is appropriated, I decided to back off from a lot of things outside of the safe stuff (like Tarot, color/candle magick, runes, etc.)

I also realized that on my mom’s side (she’s Irish, and the only Irish-American culture she has is getting to say that she’s Irish), I have actual colonizer’s blood in me, and that did not sit well with me at all. (Mom loves to brag about how we’re related to Andrew Jackson.... yeah...) I didn’t want to have any association with that at all, not even by accident. So I decided to educate myself a little regarding colonizers and the Americas.

And after I did lots of reading, I’ve come to the conclusion that, in my eyes, much of Christianity is basically a colonizing tool. And if anyone knows anything about Serbian history, it took 2 tries for that to take hold, which is precisely why much of the Pagan practices still remain within Serbian Orthodoxy.

So what’s my practice now? Welp, I’m still Pagan, I’m still a Lokean, but I’m gonna reclaim my roots and reform it. And by “reform,” I mean not only shedding the Christian aspect of it, but also adjusting the folk magick practices (so, for example, no sacrificing of animals). I’m going to do a separate post soon after this one about that, too. But I do want everyone to keep in mind that this is what I’m doing for me. I’m not trying to convince anyone to do anything regarding reclaiming their roots. If you wanna do it and have your reasons how and why you wanna do it, go for it! But I’ll be sharing what I’m doing (and plan to do, I’m still kinda in the beginning stages of it) so that others have an example in case that’s the route they wanna go.

I’m gonna end the post here, because I’m gonna start going all over the place. So once I fold laundry, I’ll make the next post all about my practice and what I am doing and planning to do in better detail (including what gods have left my life and who are sticking around!)