#getting stabbed would be less painful (just kidding my chronic pain has been so bad lately)

[readthephible]

[neurogenesisgirl]

i have been thinking. i tell (text) my best friend, "if i ever do have kids, i think i might rather adopt. i dont want them to suffer from all this chronic illness shit, because i know what thats like."

he answers. "me too" after a second, he follows with: "anger issues are hereditary. my mom, grandma, and me have it; i wouldnt want my kids to have that, because as you said, i know what thats like."

my throat betrays me. i only sit in silence, while he keeps talking about it. i know mental illness is just as bad as physical illness, and even invisibilized, but i cant help but feel... invalidated.

i mean i do not want my kids to inherit all of these health risks, of which ive acquired a copious amount. i mean i do not want my kids to stare at the ceiling at night wondering, "why me? why am i not like the other kids?" i dont want them to be buried in the heavy dirt of endless pain, pain that they'll have to clench their teeth through because thats what society has told them to do. pain that'll never end, because of pointless diagnosis — that burden them more than help them — screaming to them how they will not get out of this, at 9 years old.

i do not want my kids, if i ever have them, to lay awake at night crying, because theyre a "waste of money", because theyre not getting better and theyre not "even trying to", when a familiar incredibly shames them for accepting one candy on a party, at 10 years old.

i dont want them to be put on one hundred pills that specifically KIDS SHOULD NOT BE TAKING, and being gaslighted on side effect statistics; saying it wont affect you. then it does. then they secretly stop taking them, and when their mom finds out, they get a experience they'll never forget. at 11 years old.

i dont want them to face "grown-up talks" about their future, their health, their responsibility on themselves, the way they could even be bounded to rot in a bed if they dont make a change now... at 12. expecting a kid to mature, at twelve. then being yelled at when they start to sob, or try to say how they feel about it.

i do NOT want for them to feel familiar or comfortability on the white silence of a clinic or hospital, i dont want them to feel nostalgic because of that, because they should feel nostalgic because of a mcdonalds playground, not a place where people die, at 13.

the pain, the wheels, wheels of a machine that only exists to perhaps make you suffer more, the endless comparisons with people who have it worse. injections, blackouts, bullying. starting to comprehend all that at 14. knowing its wrong, that a child shouldnt have been exposed to it from a young age, but they cant tell anyone nor say, because they would be hit, hit with a whip of censoring; silencing. by their own parents.

among an ocean of so many things more, i find myself now. 15? when did all that go?

i lost my childhood due to physical illness.

my friend makes a joke, pulling me out of my trance. "we're like ying and yang, dude." he instantly follows with "you deal with physical illness, and i deal with mental illness."

that feels like a sharp stab in the side of my gut.

that makes me realize, isnt this what he has gone through, too? just in his own version. but he has suffered oh so similar things, and he has trusted me to know about it. something he barely does with people.

i laugh. maybe not because i got cheered up, but because i want to hide my internal process going on.

i realized why it felt invalidating.

people can never relate to the honest words of my soul. they always have to change them to their experience, to be able to try and understand. even if — by the book — thats a good way to make people feel less lonely, it makes me feel more lonely.

will i ever meet someone who will understand the deep cries of my insides? someone who will not have to twist its words, anyone with the same perceptive of what ive gone through? not understanding, but comprehending me.

no, i probably wouldnt. because that includes the tiring and vulnerating protocol of opening someones chest with your bare hands, tearing everything on the way, but being careful with each layer; placing them on a desk, to finally hold the darkness of their soul. no one is willing to do that.

im fundamentally different. i have never met someone like me.

even so, i dont blame my friend. we are just teens trying to survive the world.

maybe hes the closest i'll ever get to someone like me.

31 de marzo de 2023

— neurogenesisgirl

[chickensarentcheap]

Best Part of Me -Chapter 76

Warnings: none

Tagging: @c-a-v-a-l-r-y​, @innerpaperexpertcloud​, @alievans007​

He’s up at the crack of dawn; torn from sleep by  throbbing, excruciating pain in his right shoulder and what he’d thought was the baby crying. The latter is nothing more than his mind playing tricks on him; years spent with little ones in the house, body and brain used to their habits and schedules. The former is very real. A cold sweat covering from head to toe and causing nausea to build in his stomach; the burn of bile present in the back of his throat. It’s horrendous; a pained groan erupting  from deep within his chest and his eyes tightly screwing shut. His entire body contracts as a defensive mechanism and his breathing hitches and then speeds up; ragged, gasping breaths through parches lips and aching lungs. It burns; a white hot poker stabbing in the right trap and the spreading fire down to the tip of his fingers. He’s spent the last decade -and then some- in pain; the first Dhaka trip and the injuries sustained making the agony more pronounced and near constant.  But this...the sweats, the nausea, the tears that prick his eyes and the numbness in his hand...has elevated his suffering to an entirely new -and concerning- level. And he muttered curses through gritted teeth as he scrambles into a sit and reaches  across his body with his left arm. Eyes closed and perspiration trickling down his temples and gathered on his forehead and the nape of his neck as his fingers dig and press into the tight, aching muscles.

“What’s wrong?” Esme’s voice is groggy and her eyes heavy lidded as she rolls onto her back and peers up at him. Concern curving her lips and one of her small, warm hands coming to rest against the small of his back. “You alright?”

His eyes are still screwed shut, hand now tightly clasping the trap muscle. “I’m alright.”

“You don’t look or sound alright.” She moves her messy hair out of her face and behind her ears, then pushes herself up into a sit and lays a hand on his shoulder. “Did you fall asleep on it?”

“Yup.”

“Want me to rub it?”

“I want you to go back to sleep. You need to rest.”

“I think I know what my own body needs. This isn’t my first rodeo, remember? I’ve only done this four times before. Do you need pain meds?”

“I don’t know what I need. A new fucking body, maybe. Can you do THAT?”

“I like your body just the way it is.” Placing a kiss on the nape of his neck, she wraps an arm around his waist and rests her head against his back. “It’s a temple; big and  beautiful.”

“It’s ancient and crumbling is what it is.”

“It’s beautiful,” she insists, and then presses her fingertips into the middle of the shoulder blade; drawing a string of expletives from his mouth and even more sweat from his pores. “When we get home, you’re getting that looked at. Even if I have to physically  drag you to the doctor.”

“I’d like to see you try.”

“You can’t go on like this, Tyler. You just can’t. Chronic pain is bad enough. But THIS level of it? You need some kind of relief. You can’t live like this. And you shouldn’t have to.”

“You know I hate going there. To the specialist.”

“I know you’re stubborn as fuck and that you’ll somehow miraculously heal yourself or just learn to live like this. What do you have to be...I don’t know...so YOU.”

“His office is in the hospital,” Tyler reasons. “You know how I feel about hospitals.”

“Do you want to end up in one? Because if you keep putting this off, that’s EXACTLY where you’re going to end up. You’re going to totally fuck your shoulder up and need surgery...massive surgery...and you won’t have a choice when it comes to going into the hospital, will you.”

“Why do you have to be like this?”

“You mean a rational, concerned, and loving wife?”

“I was going to say a pain in my ass, but okay.”

“I love you, insufferable dick. And I want you to be okay. And you are far from being okay.”

“I will go and see the specialist. When...IF...I get home.”

“I’m going to ignore the word ‘if’ because it’s way too early to fight with you.  You know how much that pisses me off; when you talk like that.”

“I’m only being realistic.”

“No, you’re being fatalistic and I hate it.”  She presses a series of kisses across each of his shoulders and the nape of his neck, then curls both arms around his waist. “Just let me worry about you,” she grumbles.   “Let me take care of you. I like doing it; loving on you and taking care of you. Makes me feel useful.”

“You are very useful, trust me.”   He reaches back to wrap an arm around her, turning his body sideways and pulling her into him. “I’m sorry I woke you up,” he says, lips against her forehead.

“I was already halfway there,” Esme admits. “I’m so nauseous.”

“I’m sorry.”

“I don’t think you really are. But I appreciate the apology. I should have brought some of that tea from Mumbai. The one that Tanner's favorite nanny showed you how to make. That stuff worked.”

“I could go downstairs,” Tyler offers. “See what’s in the kitchen. Might get lucky and find something that will help.”

“I’ll be fine. Besides, I woke up to take care of YOU, remember?”

“I don’t need you taking care of me.”

“I think you do. Sometimes, anyway. And deep down, I think you actually enjoy it. I think you like when you get to  stop being hard ass and you let me take care of you.”

“I will admit to it or deny it. And I appreciate you wanting to do it. But I don’t need it. You took care of me seven years ago; enough to last a lifetime.”

“And I’d do it again. In a heartbeat.”

“Yeah, well right now? You need to take care of yourself and little bean. That’s what’s important.”  He presses his lips to her temple, allowing them to linger for several seconds. “That’s ALL that’s important.”

“Little bean and I are fine.”

“I saw you; grabbing your stomach when you were ‘talking’ with your brother.”

“That was nothing. Just mild cramping like I’ve had with all the babies. I’m fine, honest. And if I’m as far along as we think I am, we’re about out of the danger zone. We may even be out of it already.  Which means it’s even less likely that something will go wrong. Isn’t that what the doctor said last time? That my body  tries to reject it the first trimester?”

“I don’t want to talk about last time. You’ve had two pregnancies since then. Two healthy babies. They both made it safe and sound.”

“Addie was touch and  go at first. And she is very tiny.”

“But she’s healthy. All that specialists said so. And she’s tiny like her momma. It was bound to happen; one just like you.”

“I deserve that much, don’t you think? At least one that looks like me?”

“You did.”  He winces and groans when he stretches his legs out and then lies back down; pulling her into his arms and tucking her tightly -and protectively- against him.  “I’ll even let you have the last one.”

“Oh how generous of you.” She wriggles onto her side, placing her head on his chest and a hand on his side. “You’re willing to give me TWO of your spawn?”

“I don’t want to ever hear you say I never do anything nice for you.”

“You do a lot of nice things for me. I’m lucky. I’m very, very lucky. You’ve made five children in six and a half years a lot easier to deal with.”

“Well you make it awful easy. I honestly couldn’t have picked a better mother for my kids.”

She raises her head to look at him.

“What?”

“I think that is one of the sweetest, most beautiful things you’ve ever said to me. And you’ve said some pretty good ones.”

“It’s true,” he combs his fingers through her hair, pushing them through the dark, silky strands and then settling his hand between his shoulders. “Everything that’s amazing about them came from you. And they’re beautiful and they’re happy and  healthy and they’re incredible. And that’s all because of you.”

“I seem to remember you playing a pretty important role in making those children. I sort of needed your cooperation and your DNA.”

“Kinda stops there. Sometimes I think that’s all I’ve given.”

“You’re kidding, right? You have given so much more than you. Both the kids and I think that. You’re an amazing dad. Look how much they love how; how much they idolize you. Think of all the things you’ve done with them and FOR them. And I’m not just talking about regular dad stuff; dirty diapers and late night feedings and walking the floor for hours with colicky babies and making school lunches and getting them on the bus. I mean all the OTHER stuff. Who’s the one that gets up every Saturday morning to watch the sunrise with Millie and then spends the whole morning and early afternoon with her? Who’s the one that’s been teaching her and the twins to surf? Who rough houses with Declan and gives Addie baths in the kitchen sink?”

“That’s just normal dad stuff. Any dad would do all that.”

“No. They wouldn’t. Not every dad devotes nearly every waking moment he has to his children. And you do. When you’re home, they’re your entire world. You make the time and you make the effort and you don’t let anything or anyone stand in your way. You’re an incredible dad and I wish you gave yourself credit for it. Our kids adore you. I adore you.”

“Yeah?” he grins and pecks her lips. “I kinda adore you too.”

“We’ve come a long way from that apartment in Sydney,” she muses. “I remember being so scared when we brought Millie home. It was so real all of sudden; we went from a two person family to three. She was suddenly there and it terrified me. And you were so calm and so good with her. With BOTH of us.”

“I think you cried more than she did.”

“I was so frustrated! She wouldn’t settle for me and I thought she hated me. My own baby.”

“She didn’t hate you. She just liked me better,” he teases.

Esme frowns and playfully bites his shoulder. “And she still does! It’s all about daddy. Daddy is the one true love of her life and her entire universe revolves around you. Imagine what she’s going to be like as a teenager?”

“I don’t even want to think about that.”

“Tall and thin and beautiful. All the boys will be after her.”

Tyler scowls. “Why do you have to say things like that?”

“You can bury your head in the sand all you want. She’s going to be so beautiful and so popular. She is going to turn a lot of heads.”

“I’ll bust a lot of heads.”

“I think she’ll be more than capable of doing that herself. She’s only six and she’s so strong! And I’m not talking just physically.  Her whole personality is so vibrant and strong. And she’s so confident and she takes no shit. If she carries that into her teen years? You won’t have to worry about guys getting too ‘handsy’. She’ll break some faces.”

“I’m still going to worry. She’s my baby. My little girl. My little sea monkey.”

Esme grins. “You haven’t called her that in so long. I wonder if she even remembers it. You’ll have to call her that and wait for her reaction. I remember when you first called her that.”

“First time we ever took her to the beach,” he smiles. “She was what? A couple weeks old?”

“She just turned two weeks. And she’d the cutest little bathing suit; bubblegum pink with white polka dots and frills on the bum. Remember her little hat? It had flamingos on it.”

“I actually DO remember that.”

“You were the proudest dad on the beach,” Esme recalls. “You were the proudest dad ANYWHERE.  You  were so pleased with yourself’; that you’d created this beautiful, tiny little human. I remember your goofy grin; it started when I was pregnant and you get that grin every time you touched my stomach or someone asked you about the baby.  And you’ve been like that with every single one.”

“That’s ‘cause I am proud of myself. I’ve made some pretty damn good looking kids.”

“Yes, you definitely have.  And I remember that day on the beach.  It’s the most social I’ve ever seen you; showing her off to everybody.  And you took her in the water and she wasn’t even scared. Even at that age she knew; daddy would never let anything happen to her.”

“She loved the water. Even then. I knew right away I had my surfing buddy. My little sea monkey.”

“Weird how those memories just pop up. How you think about them out of nowhere. Earlier I was thinking about when we did the twins’ cake smash and TJ buried his whole head  in it.”

Tyler laughs at that. “That shit was everywhere. He had blue icing and vanilla cake up his nose and in his ears. He was covered in it.”

“And you joked about using the power washer to get him clean and my mom took you seriously and flipped out and threatened to call CPS on us. She went batshit insane.”

“She IS batshit insane.”

Esme sighs. “Was there anything good that happened there? In Colorado?”

“I delivered Declan in our living room. Never thought I’d add THAT to my resume.”

“I never thought in a million years that  I’d give birth in my own home, never mind have my mercenary husband deliver the baby. And it would be the biggest one too! He would be the natural birth. The over ten pounder! It couldn’t have been teeny little Addie. It had to be Declan. With his huge head and shoulders.”

“I was so proud of you. I mean, I’m proud of you every time. But that? That was fucking amazing.”

“I don’t think my body ever recovered from it. That kid was a tank even then. Imagine HIM as a teenager?”

“He’s going to be a big bastard. We should put in every sport we can think of. He’ll crush everyone.”

“I don’t know if that’s his personality. He’s big, but he’s so sweet and cute and affectionate. Reminds me of someone else I know.”

He lightly and playfully tugs at her hair, pulling her head back and kissing the end of her nose. “Don’t you start with that.”

“I don’t care what you say or how much you argue with me. You ARE sweet and you are cute and you are affectionate. You had to learn how to be; how to give it and receive it. But you honestly give the best hugs ever.”

“Ever?”

“How can you not? Have you seen the size of your arms? They are amazing and they FEEL amazing. And you’re a pretty good kisser, too.”

“Just pretty good?”

“Listen buddy, I’m not in charge of stroking your ego. Stroking other things, but not your ego.”

He grins. “You stroke other things very well.”

“You’ve yet to complain and it’s been almost seven years.”

“I have no reason to complain, believe.”

“You know…” she muses, as her fingertips softly and lazily traces the tattoo that covers his ribs. She knows then all by heart; every stitch of ink, every scar, every imperfection. “...you’ve been a really good sport these last seven years?”

“How you figure?”

“You’ve managed to somehow put up with me. With all of my bullshit.”

“Your bullshit nowhere measures up to mine.”

She flips over onto her stomach; fingers abandoning the tattoo in favour of exploring his ab muscles and the cut of his hips. “You think there is? Bullshit.”

“Is this a trick question? Is it one of those questions where no matter what I say, I end up on your shit list? Like when you ask me if you look fat in something?”

“I want to know. What kind of bullshit do I bring?”

“Is this going to lead to divorce? Because I really don't want a divorce. I kind of like being married to you.”

“Look, I already admit I bring bullshit. I just want to know if we’re on the same page or not. I promise you, I will not get upset. This is not a trick question. This is us having a mature and calm conversation.”

“I’m still scared.”

“Get your shit together!” she playfully scolds, and presses a kiss to her chin. “Just tell me. I will get mad. This is just us having a rational talk.”

“Baby, when you’re pregnant? There’s nothing rational about you.”

“Tyler James…”

“Esme Michelle…”

She gives a dramatic gasp. “You haven’t called me that since we got married!”

“That’s how you know I’m being serious. Like when you get pissed at the kids and use their middle names.”

“If I tell you what my bullshit is, will you agree or disagree?”

“I might…”

“I promise I won’t get upset. You don’t get upset when I call you out on your bullshit, do you? So if I call myself out…”

“Fine,”  Tyler sighs. “I’ll play along.”

“Well for starters, I when we first hooked up...and I mean we started living together and playing house...I know I had the bad habit of comparing you to Mark. Well not really comparing, more like worrying and fearing that you were going to turn out just like him. Even though rationally I knew you wouldn’t, I was still scared it would happen. And I tried pushing you away, even though it was the last thing I wanted to do. I guess I was trying to protect myself. And you hung in there; no matter how hard I made it for you.”

“I loved you,” he reasons, and gently pushes his hand through her hair, fingers slowly slipping through her before his hand comes to rest in the middle of her back. “Why wouldn’t I hang in there? I’d been running from hard shit all my life and suddenly had the one thing I didn’t want to run from. I wasn’t going anywhere.”

“And I know sometimes I still do. Bring him up. And I don’t mean to and I’m not doing it to hurt you and I’m not comparing you to him. There is no comparison.  Just some habits die hard and I can’t just let go of. Yet you put up with it. For some reason.”

“I’m not the guy who takes off any more. No matter how bad things get it. And they’ve gotten pretty fucking bad.”

“But we work through it all. Even if sometimes giving up would be the easiest thing to do. We work at it. And believe me, my life would totally suck without you in it. I’d miss you way too much; you’re too big of a piece of my world ever lose you from it. So I’m sorry; for being an insufferable bitch sometimes. For worrying too much and stressing too much and basically just being a pain in your ass. And maybe it’s actually the kids you stick around for, but…”

“Baby, I’m not just ‘sticking around’. I’m in this for the long haul. Because I love you and I’d be pretty fucking lost without you. And THAT’S why I worry. Because I can’t do this without you. This life. There is no life if you’re not in it.”

“You’d have the kids. You’d have to keep going for them. Because you’re their daddy and they need their daddy. Especially if they don’t have a mom.”

“We’re not even going to consider that.”  He presses a kiss to her brow, then lays a hand on the back of her head and draws it down to his chest. Eyes closed as he lightly massages her scalp, the fingers of the other hand skimming up and down her back. He doesn’t even want to consider it; that she’ll be the one that doesn’t make it. As hard as the kids would grieve over losing him, it would be far worse if they lost her. She’s the one that’s been with them the most; single handedly caring for them during his frequent and often prolonged absences.  The one that carried them for all those months inside of her; sacrificing her own body -and sometimes even her sanity[ to nurture them and protect them and help them grow. Her role in their lives surpassing his.

“You should take a shower,” Esme  says, her hand combing through his damp hair. “You got pretty sweaty. Are you feeling any better?”

“It’s almost gone now.”  It’s a lie. The ache...the burn...it’s still very much alive.

“Let’s go take a shower,” she suggests. “It’s a pretty awesome one. It’s massive and it’s got five shower heads and benches to sit on. We could have a lot of fun in that shower.”

“Are you trying to drop hints?”

“Maybe,” she places a line of kisses along the scar near his left shoulder. “Is it working?”

“Yeah,” he grins. “It’s working.”

****

It’s seven in the morning when he finds Koen in the kitchen Standing at the stove in just a pair of tattered old sweat as he prepares breakfast; an overly generous amount of eggs and bacon and already buttered toast. And despite the hint of nausea that lingers, he finds his stomach grumbling. Stress and worry has seen him eating very little over the last three days, and the smell of the food cooking and freshly brewed coffee is highly appealing.

“Aren’t you a sight for sore eyes,” Tyler comments, as he snags a mug from the cupboard by the sink and moves towards the coffee maker, pausing to grab a bottle of prescription meds -one of four- from their resting place on the counter. “Can’t imagine why your wives left such a stunner like you.”

“Well we can’t all be beauty queens like you, blue eyes. I’d ask what happened to you…” Koen eyes him up and down, smirking at the deep, red fingernail gouges that crisscross his back and cover his ribs. “...but judging the noises last night AND this morning, it’s pretty obvious.”

“Gotta set an example, yeah? Teach you how you should be treating and pleasing your women.”

“You can wipe that shit eatin’ grin off your face. No need to rub it even further; I’m already jealous enough.  Why you have to walk around like that? No shirt, pants practically hanging off ya.”

“‘Cause I can. Why? You questioning your sexuality?”

“I already did that when I saw what you were packing down there. Can’t you just put some clothes on? Us mortal men can’t get any lower in our confidence that we already are. And your girl already knows what you look like. So unless you’re trying to impress me…”

“In your wildest and wettest, mate.”  Tyler pours himself a cup of coffee, then takes a single sip before setting it on the counter. Twisting open the cap on the pain meds, he  dumps half a dozen into his palm. He’d taken four only a couple of hours before;  but they’ve done very little to take the edge.  “Don’t fucking look at me like that,” he grumbles, then swallows the pills dry.

“I’ll look at you any goddamn way I want,” Koen retorts. “What are you doing?”

“I’m doing what I gotta do to function.”

“You need that many to function?”

“What if I do? Get off of my ass.”

“Doctor tell you to take that much?”

“Fuck the doctor,” Tyler snarls. “I know my own body, okay? I know what it can and it can take a hell of a lot more than what he prescribed.”

Scowling, Koen grabs the bottle off the counter and studies the label. “Dilaudid. That’s some pretty strong shit.”

“Seems pretty mild to me. It’s doing fuck all for the pain.”

“You know this is some hard core stuff, yeah? And you’re taking THAT many?”

Tyler snatches the bottle from his friend’s hand and shoves it into the front pocket of his jeans. “Why don’t you mind your own fucking business?”

“Esme know you’re taking those?”

“Of course she does. And she knows why I’m taking them.”

“Does she know you’re popping them like candy?”

“There’s some things she doesn’t need to know. And that’s one of them. She’s got enough to deal with.”

“So why put more on her? That last thing she needs is you becoming a junkie again.”

“I was not a junkie.”

“Like fuck you weren’t,” Koen growls. “You need rehab for that Oxy shit. And now this? You want to be an addict all over again? Because what I just saw? You’re well on your way.”

“I don’t take that many all the time. Just once in a while; when things are extra bad. And right now, they’re pretty fucking bad. So unless you’re the one going through this, mind your business.”

“I’m just saying…”  Koen turns back to the stove.  “...you’ve come a long way; beat a lot of demons. Last thing I want is you fucking yourself up. Fucking EVERYTHING up. Do you want to lose your family? Because that’s how you lose your family. Getting hooked on shit like that.”

“Won’t make a difference if I die here, will it.”

Frowning, Koen fills a plate with food and holds it out to him. “I’m going to ignore that. How about shut your fucking mouth by putting some food in it.”

Smirking, he accepts the plates and carries it and his coffee to the table. Visibly wincing when he drops down into one of the chairs.

“Esme’s not coming down?” Koen asks, as he prepares his own plate. “I made enough for the three of us. And then some.”

“She’ll be down later. She’s not feeling well.”

“What happened? You two get a little carried away? You fuck her into a comatose state?”

“I’m not discussing my sex life with you. She’s just not feeling well. She’s nauseous.”

Koen slides into the chair across from him. “Bad nerves? Bit worked up about today?”

“Something like that.”

“Why am I getting the feeling there’s something you’re not telling me?”

“She’s just not feeling well. She’s under a lot of stress. She misses the kids, she’s worried about them, worried about me. You blame her?”

“Always is stressing herself out about your sorry ass. There’s something else going on, though. Something more serious. You’re always protective of her, but you’re even more so all of a sudden. I noticed it last night; you’re totally on edge and you’re watching every little move she makes like you’re waiting for something to go wrong.”

“I worry, okay? I worry about her. I’ve got reasons to worry. I’ve got five little kids that need their mother. And if anything happens to her…”

“It won’t. Not on my watch.”

“Better not. Because if anything does, I will beat the ever loving shit out of you. Something happens to her when she’s with you. I will fucking kill you. I’m not even joking.”

“Easy, mate, easy.  No need to get that wound up. I won’t let anything happen to her. I won’t anyone ruffle even one single hair on her head.”

“You better hope not. ‘Cause you’ll see a side of me you’ll wish you never had.”

Koen nods in understanding, then takes a swig of coffee before both men dig into their breakfast.  No more conversation; a subtle tension hanging in the air, accompanied by the scraping and tapping of cutlery against porcelain. And after several minutes, Tyler swallows a mouthful of piping out brew and sighs heavily.

“She’s pregnant.”

Koen stares at him, eyes slowly widening, fork pressed against his lips.

“We don’t know how far along. Can’t be any more than ten weeks.”

“You’re kidding, right?”

“It’s why she’s not feeling well. She’s been pretty sick; all hours of the day. She hasn’t had one yet that hasn’t made her sick all the way through.”

“You’re NOT joking?”

“We decided we wanted another one. But we didn’t think it would happen THIS soon. And really, it should have happened at all.”

“I thought you got things taken care of? The old snip.”

“I did. So either the doctor fucked up or he was telling the truth when he said there was still a chance of it happening and we should be careful for a few months. Which, obviously, we weren’t.”

“Jesus Christ! Are you being serious right now? You’re not just yanking my chain?”

“Do I look like I’m joking? Do I sound like I’m joking?”

“For fuck sakes, mate! What is wrong with you two?”

“There’s nothing wrong with us. We’re married. We wanted a big family.”

Four was a big family. Then you added the little princess. Five wasn’t enough? What the fuck…?”

“What the hell does it matter to you how many kids we have? We have the money to take care of all of them. Especially now. And I didn’t tell so you could get on my ass about it. It happened. It is what it is.”

“Some fucking timing you two have. Out of all the time to find this out…”

“It can’t be any worse than knocking her up with Millie the first time here. Nothing can beat that.”

“I remember when you said little red was the last one. And then Addie. So what the hell?”

“She’s pregnant. We’re having a baby. And that’s why you better make sure you watch her ass. Because if something happens to her...to THEM...I will fucking hurt you. I won’t even think twice about it. You take her out there and you bring her back in one piece. Because that is my wife. The mother of my kids.  My entire fucking world. And if anything happens to her…”

Koen directs a kick to his sun under the table when Esme appears on the stairs, pulling her damp hair away from her face and securing it with an elastic band that dangles from her teeth. And she pauses at the bottom landing when she notices him intently watching her.

“What?” she asks.

“Good morning, sunshine,” he cheerful greets. “I’d ask if you slept good, but I don’t think you got much rest. Not based on the racket you two were making.”

“Oh I’m sorry. Did your virginal ears not like hearing that?” she teases, making  her way to the stove; a hand against her stomach and a grimace on her face as the sigh and sleep of the food makes her queasy.

“Go sit down,” Tyler gently urges, as he sidles up beside her; curling an arm around her waist and pressing a kiss to her temple. “I’ll get you something.”

“Baby, I can get my own.’

“I know. But  maybe I want to do it for you. Humour me, please?”

Smiling, she stands on her tip toes as he leans down to kiss her, then snags a piece of toast from the heaping plate on the counter.

“Now what?” she inquires with a laugh, as she joins Koen at the table. “Why do you keep staring at me?”

“You got him just spoiling your ass, don’t ya?”

“I do. And you know why? Because he loves me and wants me to be happy.   And one day, you’ll find a woman you feel that way about. Someone you’ll want to spoil and wait on hand and foot.”

“Not bloody likely!”

“In the very least, you’ll learn a lot by listening to us. About how to please  a lady.”

“Excuse the hell out of you! I have no problem in that area!”

“Your own two hands are NOT considered ladies,” Tyler informs him. “Whether you name them or not.”

Koen scowls and shoots him a middle finger. “So tell me…” he leans forward in his chair, regarding Esme seriously. “...are the noises for real? Or are you just stroking his ego?”

“I don’t stroke egos. Other things, but not egos.”

“There’s no way they’re real. No way.”

“Listen, just because you’ve never gotten that response from a woman, doesn’t mean it’s bullshit. I don’t fake. Ever. At least not with him.  Those noises are as real as real can get. And before you ask, I’m not telling you what he does to get that kind of response from me. Don’t be creepy.”

“Creepy’s his middle name,” Tyler says, as he sets a plate of food and a mug of tea down in front of his wife; dropping a kiss on the top of her head before returning to his chair.

“You’ve got some skills, I’ll give you that,” Koen grins at him. “You DO know how to keep the little lady happy. I’m impressed with you.”

“His skills ARE impressive,” Esme sips her tea. “Very impressive. And why do you keep staring at me, Grandpa Koen? You’re freaking me out. Did the noises bother you that bad?”

“A little birdie told me something interesting about you.”

“They did, did they? Let me guess; the little birdie isn’t that little. More like six three, two forty?”

“I’m innocent,” Tyler informs her, and finishes off the remains of his coffee.

“You have guilt written all over your face. What did you do?”

“Heard that blue eyes here isn’t shooting blanks after all. That he’s put a wee bun in the oven.”

Esme stares pointedly at her husband. “You told him? I thought we weren’t telling anyone until we got home?”

“He threatened to beat it out of me.”

Koen snorts. “I did no such thing.”

“I told him you weren’t feeling well, he took it from there. He was worried about you  so I just put his mind at ease. That’s it.”

“Which it didn’t do,” Koen laments. “It did not put my mind at ease. Not in the slightest. Are you sure it’s smart? You going out there? In your delicate condition?”

“My delicate condition?” Esme laughs. “What is this? The forties still? I’m not in a delicate condition. I’m having a baby. Which I’ve done a few times before. You both need to relax. I’m fine.  I’m going out there to ask questions and get information. What could go wrong?”

Tyler smirks. “You just have had to put that out into the universe, didn’t you.”

“So now I feel like a bodyguard for two,” Koen frowns. “No pressure, right?”

“All you gotta do is follow her around and try to look intimidating,” Tyler says. “Keep your mouth shut and let her do the talking.”

“Which Tyler failed miserably at seven years ago,” Esme takes a bite out of her toast.  “Because he hates not having control. It drove him insane. He was so bossy. And miserable. He tried to choke me.”

Koen’s eyes widen.

“I did not try and choke her,” Tyler argues.

“He was all pissed off and ragey,” she continues. “So he had a meltdown and grabbed me by the throat.  Does that not qualify as choking?”

“You liked it,” Tyler reminds her.

“In the end I did.”

Koen scowls. “I do not need to know this stuff. I don’t care how kinky you all are, but it doesn’t mean I want to hear about it!”

“All you have to make sure of, is that you don’t blow it for me,” Esme tells him. “Stay quiet. Let me handle people. Because if you say something that   gives us away..”

“You’re just there to make sure she’s okay,” Tyler adds.  “And you better make sure she’s okay. ‘Cause if she gets back here with even one scratch on her, I’ll have your ass. I don’t care how long we’ve been there.”

“Tyler’s very protective,” she says. “In case you haven’t noticed.”

“Tyler has a reason to be,” her husband retorts.

“Just let me do my job,” she addresses Koen. “Don’t say anything, don’t get in the way, don’t jeopardize anything. You don’t fuck things up, we get out of there in one piece. You say something or do something that gives away who we really are….”

“All of Dhaka will come down on you,” Tyler finishes. “And you won’t get out of there. And she NEEDS to get out. I don’t care how you do. Just make it happen.”

[lokilickedme]

Because things have been odd lately...

I know some people aren’t understanding my behavior in the last week or so.  I know I’ve been “off”.  I know I’ve been less interactive.  I know some people have taken silence and lack of response on my part as something personal against them.

It’s not.

I’m going to tell you something.  If you clicked and continued reading, then you care enough for this to matter, or you’re curious, or bored and looking for someone else’s drama to entertain you.  It’s fine, I’m the same way.

But this is important, to me at least.

For the first time in my entire life I said five words that I never thought I would hear myself say, out loud, in my kitchen, in front of another human being.  Granted, it was in the middle of some of the worst pain I’ve ever had, at the peak of one of the most stressful weeks I’ve had in ages.  But I still said it, and I can’t stop thinking about it now.

Just five words.  Five words I’ve never even said inside my head, much less out loud.

I wish I was dead.

A lot of you don’t know me apart from what I share with you online.  Fandom stuff.  Writing.  Funny stories about my kids and pictures of whatever.  But those of you that have gotten to know me a little bit beyond those things know that this, those five words up there, that isn’t me.  Those words are not something you would ever hear me say, or even hint at.  I’m not depressive.  I don’t have suicidal thoughts or ideations, I never have.  And I still don’t.  But nothing stopped those words coming out of my mouth, no safe barrier flew up to prevent my tongue forming them, and now I can’t unhear them.

I don’t think I meant it.  I know I didn’t.  I think the wording of it is important - I didn’t say I want to die.  I said I wish I was.  I’m sure it had everything to do with the pain and the final frazzled unraveling of my nerves, because I’d felt for three days at that point like I was about to go full blown into a nervous breakdown.  But when they hit my ears carried by my own voice, there was no stab of nervous panic at hearing them.  Just sort of...

I don’t even know.  I’m not going to go too far down that road, because I don’t think it ends anyplace I want to be.

This is where it starts, I think, at least the recent part of it.  I’m not going to go back further to the obvious roots of an entire life of twisted bullshit because I’m actually dealing with that a lot better than this.  And a lot of this likely won’t make sense to a lot of you - I’m sorry.  Read on if you wish...if not, no hard feelings.

Most of you know a little bit about my oldest son, the one we call Big.  You probably know him best as my witty smart longsuffering angel who copes on a daily basis with his trialsome frootloop of a younger brother.  Some of you also know he has some struggles and that he’s come so far and done so much.  You all know how proud I am of him.  He’s my first, the one I nearly had to let go of before I ever knew him, the one I almost had to let go of myself for.  He’s the one I’ve tried to carry to the far side of hell so he can step safely through the door onto cooler ground while my own feet are on fire.

I’m afraid I’m losing him.  He has made profound, astounding leaps of development this year.  But something has happened, and I don’t know what or why.

He’s suddenly regressing in some ways.  He’s losing his ability to maintain eye contact, something that’s common for children with his wiring differences but that he’s never had a problem with until now.  He repeats himself constantly now.  Sometimes it’s nonsense, though I know it makes sense to him somehow.  I can give him the same answer to a question or the same reply to a comment ten times in an hour.  Sometimes more.

He wanders off on flights of fancy, telling himself stories that he sometimes shares with me, about people he knows and places he goes.  People and places he’s created for himself.  He’s always known they exist in a separate world, but lately he’s been introducing them to us as if the worlds no longer have walls around them.  And he actively fears some of them.

He drew a face and handed it to me yesterday.

That’s him, he said.  And then he told me he loved me, and that he would do his best to protect me from him.  I don’t know who him is.

This year he started to master physical contact, which is a big thing for him.  He’s always been loving but never physically affectionate.  Never hugged or kissed people, not even me.  His hands have always been kept away from everyone, his physical self kept carefully apart from a world full of bodies he distanced himself from without a second thought.

Several months ago he decided he wanted to learn how to hug, so we worked on it.  He got good at it.  He was understanding the rules of it, determining appropriateness of timing and recipient, various reasons for extending or offering physical touch.  The science of it, which was the only way he could understand it.  And he got to where he enjoyed it and it didn’t causes him distress or discomfort.  He even lost the awkwardness.  It was no longer like hugging an automaton...it felt like hugging a child.

And now suddenly he just holds on.  Won’t let go.  It’s like he’s afraid to move away, to sever the connection.  It’s no longer just a curious desire to feel contact with another human being, to overcome a facet of “otherness” that he’d noticed in himself.  Now it’s like a fear of the space between us.  He doesn’t want to let go.

As I write this he’s sitting on the floor in front of me, not interacting, just being close.  He isn’t looking at me.  I don’t know where he is...he’s somewhere else, but he’s making an effort, a desperate one it feels like, to stay near me.  But it feels like every day he goes further and further down a road I can’t see, and from time to time he’ll look back over his shoulder and remember that this is where he needs to be...but he keeps walking.

I’m scared for him.  When I speak to him now, his eyes nervously dart to other places.  Faces have begun to disquiet him.  He flinches at noises that he’d gotten used to.  He tries to maintain eye contact, he realizes what he’s doing and pulls his eyes back to my face, but they dart off again quickly to some empty space beside me.

He goes into his other places more often.

He’s losing his ability to connect.

I don’t want him to disappear into some other world where I can’t follow him.  But I don’t know how to pull him back to the safety of this one.

I don’t even know if this is the safe one.

I’m not the best person to help him right now.  I’ve been cranky.  I’ve been having chronic migraines for weeks.  I haven’t been easy to get along with.  I’m trying, but sometimes it feels like all my physical, mental, emotional energy goes to everyone else and leaves nothing for me.  My argument with myself is that I’m the mother, it’s supposed to be like this.  But I feel like I’m dying sometimes.

More so lately.

I lost a baby recently.  Very recently.  I didn’t tell anyone because I knew from the start something wasn’t right and there would never be any good news to announce.  My hCG levels stopped rising and never went any further.  I’ve been sick from that - physically a little, emotionally a lot - and haven’t wanted to deal with anyone or anything.  Just working with Big, trying to hold onto him somehow.  Trying to keep Little under control, which is...an undertaking of such astronomical proportions that I don’t even know where to start.  He has issues of his own and I haven’t been a very effective parent for him lately.  He’s frustrated, I’m frustrated.  We’re all frustrated with each other.

I’ve been dealing with some fairly huge internalized trauma from other things as well, in recent days.  Things from the past that I never realized were tearing me up until I took steps to distance myself from them.  I won’t go into it here, right now.  You’ve seen random posts from me about it, and you’ve seen me go off on people for not understanding.  You’ll probably see more of it.  I’m just beginning to realize how bad things were.  I don’t know yet how to deal productively with any of it.

I’ll figure it out.

I don’t need someone to solve my problems.  I vent to soothe my nerves and no other reason.  It’s how I deal with whatever shit is eating me.  Please don’t feel the need to help me or try to fix anything, or even feel obligated to offer sympathy - god please don’t, because that’s not what it’s for.  If you see a rant from me it simply means I’ve hit a point where I will explode if I don’t put words to my feelings.  This is the only safe place I can do it.

Also please know that if you do say something kind to me in those moments and I don’t say anything back to you, it’s nothing you should take personally.  I love you.  I just can’t tell you that I do.

If I go quiet for days, don’t take that shit personal.  It’s nothing to do with you.

If you say something that triggers me and I get rude with you, don’t take that shit personal either.  I’m weak these days.  My whole life has been about controlling myself and my every response to everything, tiptoeing around every other human being on the planet with the enforced belief that literally everyone’s feelings are more important than my own.  That I’m not valid as an individual, that only my usefulness to other people is important.  And I’m finally done with all that.

But I don’t know how to do it right.  I’m a fucking child as far as allowing myself to react to things.  I’m having a really rough time right now and I’m getting myself through it however I can figure out.  Ignore me if you must.  Just don’t take it personal, because none of it is about you.

I’ve found some things that help me cope and make me feel better.  I’ve been keeping them separate from my main blog because I know most of you are here for one type of fandom content, and my other interests aren’t it.  But I’ve just realized...this is my blog, and I’ve spent my whole life hiding things I loved because other people didn’t like them or didn’t approve.

Not here, not anymore.  Not so much in my personal life anymore, either.  If I like it I will say so and I will share it because it makes me happy.  I’ll do art and writing for other fandoms in addition to the one you originally followed me for.  You know you’re free to share in it with me or not, I don’t have to explain that.  I’ve had my share of people claiming they would read anything I write no matter what it is, only to have them vanish the second I start writing something outside their preferred fandom.  It’s happened more often than I care to mention, but there it is.  And that’s their right and choice, I respect that.  But it’s not going to stop me from writing what I want to write.  Not anymore.

I write because I need to.  For me.  I share it with the rest of you.  People have come at me recently in the comments section at AO3 expressing their dislike over various things, and I’ve responded politely with as much accommodation as I can muster.  I think I’ve allowed a lot of reader entitlement concerning my work over the past five years, changing things to suit people even if it didn’t suit the story, simply because they barked at me about something they didn’t agree with.

I won’t be doing that anymore.  Because if you’ve read this far, you’ve likely realized at least one thing - 

Pretty much everything I write is based in some way on my own reality.

It hasn’t always been pretty.  And things get really rough sometimes or veer way off down a twisted road before they get resolved, just like life tends to do.  I don’t write a lot of easy fluff these days.  It’s your right to read it or not, but I do ask that you respect my right to write what I choose, because it’s my coping mechanism, and sometimes I have a lot to cope with.  And I do that by turning real life bullshit into something entertaining, because the best thing you can do with monsters is put a goofy hat on them so they can’t scare you anymore.

At any rate, this is a not so quick synopsis of why I haven’t been particularly fun in recent days.  I try, but it gets on top of me.  I’ve felt ignored, shunned, overlooked.  I realize that is sometimes my default assumption, that I’ve worn out my welcome and no one cares anymore.  I also realize that sometimes it’s just that other people have their own shit to deal with and they probably haven’t even noticed I was gone.  But I came back after a few days of silence to some hurtful shit that I know was done with intent, and I’m trying really hard to overlook that.

One of my few redeeming qualities though, I think, is that I bounce back fairly quick...so give me a few days, a couple of weeks, whatever, to get my bent up self back into shape.  I’m handling more than I can handle at the moment in my life outside of here, and I can’t hand it over to anyone else for even a minute.  I’m doing my best.  I’m not okay right now.

I will be, but I’m not going to rush it.

Nothing good survives being rushed.

[slashiest-slasher]

Hey, a headcanon for slashers reactions to finding out their s/o has a chronic pain disorder? (I have Fibromyalgia so I'm curious to see what you come up with) 😊

I don’t have a diagnosed chronic pain disorder, but my body aches most of time because im so malnourished and treat my body bad so ( ̵˃﹏˂̵ ) BIG MOOD MY DUDE 

Freddy Kruger

If there’s any of the killers that understand chronic pain, it’s gonna be Freddy. He’s practically in the same boat as you. He’s got aches deep in his bones, and his skin constantly burns and every shift of the wind feels like he’s being reignited every time.

But, Freddy is however not the man you want for comfort. It’s not exactly in his forte. Since he’s, ya know, some kind of dream demon ghost he doesn’t exactly have a stash of pain meds laying around. “Yeah kid, I get ya.” He’ll likely just lay down next to you, finally being quiet, until the worst of your pain subsides.

He tries his damnest to pull you into his dream world. Where his wishes are the will of the world. There you don’t feel your pain. Calls it his little retreat from the world, and he wants to keep you there forever but you’re one of the few people who he actually respects, so he lets you go. But his little retreat is there any time you want to relax.

Jason Voorhees

Jason doesn’t quite understand at first why you’re so slow doing things, or sometimes your breath hitches and you have to pause. He thinks, maybe, that he hurt you some how, bruised you or dropped you. Each night, he runs his hands across your body, gently pressing to find the point of the pain. You don’t make much of it at first, just him reassuring himself.

And then. The “incident” happened. It’s not much to you, just a larger flare of pain than normal in your chest, sharp enough to catch you off guard and knock the breath out of you. All you needed was to kneel on the ground to catch your breath, wait for the worst of the pain to pass. But Jason was /not/ letting that happened. 

He thought that, somehow, he hurt you again, this time bad. He had those big puppy dog eyes, and you had to hold his hands and explain to him that your body just hurt. No rhyme or reason, it just ached and sometimes the pain got bad and you had to wait for it to pass.

From then on, Jason was so much more gentle with you. No matter how much you insisted you were fine, and he didn’t need to be so careful around you, he continued. Almost scared that he was going to make your pain. He even raided campers cars for painkillers. The wrong kind, and too strong for you, but it was the thought that mattered. Over time, he learned that he didn’t need to constantly worry about you, but there was always a softness to the way that he touched you.

Michael Myers

Michael is somewhat on the fence about chronic pain. On the one hand, his pain, what he feels doesn't slow him down. On the other, his body constantly aches and hurts from years of battering and neglect, one can only get stabbed, shot, crash cars, and fall long distances before the wear and tear starts to show. 

When he's at home, with you, it's more apparent than when he's out on a hunt. He moves less, and slower when he does. You know the signs of someone in pain, and it's quite apparent. You ask him if he's hurting, and when he doesn't respond, you tell him it's okay if he does, because you hurt too. Nearly all the time. He was never really aware about your chronic pain, you never showed any signs of it, but then again you HAVE been dealing with it for nearly your entire life. 

Your relationship after that becomes more... symbiotic to say the least. You get heating pads for Michael when he gets home, draw warm baths, and have otc medicine for when it becomes to much, and he, in return, brings home medicine for you. The exact prescription and strength you need, but always a different name on the bottle. One day you even returned home to have a brand new mattress topper, an expensive one that you didn't really want to know where it came from.

Leatherface

Unlike a lot of the slashers, Bubba is quite familiar with the trappings of chronic pain. It came with living in rural Texas. People worked hard until their bodies couldn't keep up. Arthritis, bad backs, phantom pains, you name it, Bubba's seen it from who ever is passing through. You're no different, and even though you never told him outright about your chronic pain, but he could always tell. Drayton was somewhat the same, a bad back still suffering from old injuries that would go out whenever it damn well pleased. Never spoke about it either.

He get Drayton to give you the easier jobs around the house, cleaning up or helping with the cooking. That part always grossed you out, but as a farm hand you couldn't argue much about the jobs you were allotted. 

It took quite a bit of complaining, but Drayton eventually gave in to letting you handle collecting lumber, fixing up cars and maintaining the generators, and other more physically intensive jobs around the house and gas station. When you were at the house, Bubba would always linger around wherever you were, though you never did quite need his help.

Then things started getting more, let say 'romantic' between you and Bubba. The more he would find out about you and your chronic pain, the more worried he got. The various pill bottles around your room, heating pads and ice packs, sleeping pills for the times when your aches wouldn't let you sleep. It worried Bubba to no end and he always fussed over you. 

Part of you wanted to tell him that you're a big grown adult and you can take care of yourself, but another part liked the attention. You had to sit him down one day and tell him the gist of things: You've been dealing with this for a hell of a long time, and it has never stopped you from doing your job. That cooled him off a little, and he somewhat understood. Never stopped him from doing all the heavy lifting around the house though.

[rudolf-rokkr]

Heyo. I've been trying to get into more heathenry/norse paganism kinda stuff (what can I say, I love folk metal), but the one thing that's kind of been a damper on the concept for me is the concept of Hel - specifically, how (as I understand it) dying of sickness or old age is a form of cowardice and punishable by eternal torment. Being chronically ill myself, that doesn't really sit right with me. Do you have any thoughts/corrections/resources on this topic in particular?

Thanks for the question. Basically the image of Viking afterlife concepts that has entered popular culture is extremely shallow and not a good representation of what we know believe actually existed. This is a big topic so it’s easy to get lost but I’m gonna try to keep it simple without leaving too much out but feel free to follow up if it seems like I’ve missed something. It’s long so the rest is behind the break.

I’ll start with the major point I want to make and then we’ll fill in the “so what then?” after. The reason you’re disturbed by this is because it’s, at least partially, a recruitment tactic. It’s designed to tempt you to suspend your reason and even if it did apply to your personal situation you’re better off not falling for it.

I know some people find strength in the Valhöll idea and I don’t want to take that away from anyone but my uncensored opinion is that it’s for dupes. It’s full of people who wasted their lives in service to kings who didn’t give a shit about them, who used them to gain rule over them. Óðinn isn’t vetting them for bravery, he’s vetting them for certain personality traits that are bad for self-preservation but good for early proto-state-formation. That’s why it’s the afterlife we find out about from Snorri. He was a court poet, trying to piece back together a cosmology from shreds of court poetry that extolled the virtues of fearlessly taking an axe to the face in defense of your favored tyrant. Frankly, I can’t imagine anyone wanting to go to an afterlife where you have to die every day. I think this was more of a prestige factor among the living than an actual hope for the afterlife. I could be wrong though since the primary audience of such a myth would have been, like, 18-year-old kids hopped up on adrenaline, having just left the family farm for the first time in their lives, suddenly being adorned in gold and addressed by kings and making their first kills and drinking unending ale. Frat boys to whom the world is suddenly open (note that we’re mostly talking about higher class people anyway because they’re the ones who could afford weapons, so the world was already more open to them than others). Like the primary source for details about Valhöll is Vafþrúðnismál which rather likely was performed before an audience of these young, drunk warriors far from home (see Terry Gunnell for theories about performance of Eddic poetry).

So yeah, I could see them falling for this, or thinking it sounds appealing, or whatever. But at the same time I doubt anyone would have admitted out loud that killing each other all day every day for eternity would be awful (in fact it sounds a bit like the Buddhist hell Sañjīva but with good food). If it’s a real thing its full of people who can’t admit they’ve longed for Niflhel for centuries. 

That isn’t to say it can’t be a legitimate belief as well, just that this is its primary social function from the perspective of our sources. I’m sure that another motivating factor for the preservation and distribution of this belief is that those promising 18-year-olds also had families back home and maybe wives and kids and they were supposed to come home from exploiting the Karelians for the King’s tribute to take care of all this, and the pain of such a loss is made somewhat more mild by believing that these individuals have been called to the higher purpose of preserving the cosmic order. Not saying I agree, just that I get it.

(Note that in reality we have substantial evidence that the actual motivating factor for at least some “Viking” warriors wasn’t a glorious afterlife but rather they were mercenaries and maybe not even locals).

Now onto the next point. In Gylfaginning Snorri says that Óðinn decides where people go when they die and that good (siðaðir, literally more like ‘ethical’ I guess) people go to Vingólf or Gimlé (note: not the same as Valhöll; this might be where Snorri thinks good people who aren’t killed in battle go) and that bad people go first to Hel and then to Nifhel. The problem is that he’s full of shit. This isn’t corroborated anywhere. We can put the “full of shit” onus on Snorri the Christian who believed literally in an all-powerful God and Heaven and Hell, or we can put it Snorri’s depiction of Óðinn as Hárr/Jafnhárr/Þriði lying to Gylfi, but either way it’s obviously wrong and easily refuted.

For one thing there’s nothing moral about it. It’s just down to the manner of death. The greatest hero of Germanic mythology, Sigurðr Fáfnisbani, went to hel because he was killed in his sleep or stabbed in the back. And we know he went to hel because Brynhildr committed suicide in order to follow him. And according to skaldic poetry, King Hákon góði went to Valhöll despite not even being heathen because he died in glorious battle.

Grímnismál says that Freyja gets half the slain warriors; Þorgerðr Egilsdóttir (who is not a warrior) in Egils saga expresses expectation that she’ll spend the afterlife with Freyja. In Hárbarðsljóð Hárbarðr (Óðinn) makes fun of Þórr because he receives slaves into his halls rather than rulers like Óðinn does. Snorri himself tells us that Gefjun receives those who die as unmarried women which doesn’t apply to your situation but is another hole in the Valhöll/Hel paradigm. He also says that Rán (the sea-gýgr) takes those who die by drowning, which is corroborated by Eyrbyggja saga (chapter 54, when the drowned men show up to their own funeral, perpetually dripping wet).

Meanwhile, other than very specific parts of it that might be designated for people marked for obliteration from existence (this is based on lines in Vafþrúðnismál describing Niflhel as the place “whence men die out of hel,” what precisely that means is not obvious), we don’t have much reason to believe Helheimr is really so bad. Hel herself seems to thrive on death and decay and all that but I mean, it’s the world of the dead, that kind of seems to make sense and we can’t frame it according to our perspective as the living. On the other hand though, most of our evidence actually points to the world of the dead having a relatively strong sense of continuity with the world of the living. That seems to be why people were buried with their stuff – they weren’t done using it. 

Whether or not we should place Glæsisvellir or Ódáinsakr in the “world of the dead” (they get an association with Jötunheimar in some sources – it’s not clear if this is part of the Euhemerizing process where mythological places are mapped to geographical locations, or if Jötunheimar was part of the “world of the dead”) is unclear. Glæsisvellir ‘shining fields’ are a sort of “otherworld” more like what you normally see in Gaelic myth and legend that tend to show up a bit later in Norse mythology but seems to possibly play on things that show up as early as Ahmad ibn Fadlan’s description of the Rus’. It’s pretty much Valhöll for peaceful people. Ódáinsakr is a place within Glæsisvellir where there is no death and everything comes back to life. They’re usually ruled over by a very benevolent and hospitable jötunn named Guðmundr or Goðmundr (though split from the same origin, guð is used more for the Christian god and goð more for heathen ones, so calling him Goðmundr is marking him as heathen). Basically it seems to be Norse Elysium.

Finally, the afterlife that has the most support from the Íslendinga sögur, which means it’s probably the best reflection of the day-to-day beliefs of average people during the Viking age is some kind of continued existence in the landscape. The most clear description is in Eyrbyggja saga wherein it’s seen that the mountain Helgafell opens up to receive Þorsteinn þorskabítr and his companions; the mountain contained a whole hall full of people with fires burning and horns blowing and everything to welcome Þorsteinn. It was later discovered that Þorsteinn had drowned (note that this is the same saga I mentioned before where drowned sailors go to Rán).

Some scholars think that this is actually the origin of Hel and Valhöll. That they were just the continued existence of the dead, basically underground or living in rocks or other natural formations (like the elves do in Icelandic folklore). The abstraction of Hel and Valhöll from geographical location might have been part of the universalization/mobilization that some scholars propose for the development of the Óðinn cult (see: Tracing Old Norse Cosmology by Anders Andrén).

We also see a sort of double-afterlife in Helgakviða Hundingsbana II (a.k.a. Völsungakviða in forna) wherein Helgi has some kind of mobility between his burial mound and Valhöll… and then is later reincarnated.

Reincarnation pops up a couple times in Norse lore, this aforementioned poem being one of them. It actually says:

Þat var trúa í forneskju, at menn væri endrbornir, en þat er nú kölluð kerlingavilla.

‘It was a belief in heathen times that men would be reborn, but that is now called an old wives’ tale.’

It’s also implied in Flateyjarbók that Saint Ólafr is the reincarnation of an old heathen king who was worshiped as an elf in death, Ólafr Guðrøðarson (Ólafr Geirstaðaálfr). I did a post about reincarnation on my other blog that covers a lot of the same ground as this post.

Reincarnation is also a more or less fixed part of Urglaawe, a variant of modern heathenism focusing on the experience of the Pennsylvania Dutch (although these other afterlives are as well – just part of a process that ultimately results in reincarnation. To my mind such a view is perfectly compatible with everything else I’ve mentioned above).

The Wild Hunt does not factor much into Norse mythology but we have a pretty good idea that the concept was around based on its appearance in later folklore and its general wide spread across world cultures. It could possibly be related to the Valhöll afterlife concept, perhaps among a different class of people. We are pretty sure, for example, that Óðinn was popular in Denmark before Christianization and we are not able to connect him clearly to a ruling class like we are able to do with Norway (largely because of a general lack of literary sources for heathenism for that time or place). While no evidence compels us to do so, we have room for envisioning an Óðinn-centric afterlife that is not Valhöll, nor restricted to the upper classes. I mean he’s clearly a “god of the upper classes” but he’s no less a wandering hobo.

Anyway, the point so far is that there are lots of alternatives to the “Viking heaven” vs. “Viking hell” bullshit. This is probably not exhaustive and it partially conflicts. That isn’t surprising given that there is no centralized heathen authority and what we’re actually talking about is a huge variety of religious ideas that circulated differently along localities, social classes, time periods, social contexts, etc.

If we can point to something underlying all of this, it’s that there was believed to be some kind of continuity between life, manner of death, and afterlife. People dying in battle and going to Valhöll is, to my mind, an extension of this. “Those who die violently have a violent afterlife.” Whether or not that’s good will depend on the person, I’d imagine. Those who die in illness (and remember that there was a relationship between illness and trolls and elves or other unclean or vengeful spirits) may unfortunately find themselves in an afterlife characterized by fever and coughing and other unpleasant things. However the afterlife also seems negotiable, fluid, and furthermore determined at least partially by the activities of the survivors. When Ahmad ibn Fadlan attended a Rus’ funeral one of the Rus’ made fun of him because to him, the Muslim practice of burying the dead meant that the deceased would have to lie there in the ground while they decomposed, as opposed to the Rus’ who were cremated and thereby went immediately to the gods (by the way both burial and cremation happened under heathenism, so this is clear evidence of discontinuous religious belief among heathens and that we can’t call it “one” “religion.” Snorri associated burial and cremation with the cults of Freyr and Óðinn respectively in Ynglinga saga but of course he didn’t have all the archaeological evidence we do so we shouldn’t take that as necessarily true, but it’s interesting that he knew about both). We also see worship of the dead in the sources as the dead were considered to continue to have contact with the world of the living, for example by influencing crop yields and local weather patterns. Snorri’s Euhemerized history of the kings of Scandinavia exploits this to explain how the human king Freyr became a god – he was a human king who died and was worshiped as an ancestor at first before being reanalyzed as a god in the popular tradition. Though maybe not with Freyr specifically, this probably actually happened, even if more strictly localized, like in Vita Anskarii wherein it’s said that a certain King Erik was accepted by the gods as one of them when he died.

This is why I can’t help but think of Valhöll as “if you spend your life bootlicking you’ll spend death doing the same.” Indeed, even in the old sources, hierarchy in human society is replicated in Valhöll when Helgi Hundingsbani goes there and humiliates Hundingr by ordering him around.

We might also gain some insight by comparing other cultures that share beliefs in common with the pre-Christian Norse.  Though close reading of literature and comparative religion most people believe that the Norse did not believe in a single soul but rather something of a personal complex. We see this in other circumpolar cultures that also recognize things like the World Tree, ancestor worship, nature spirits, etc – that doesn’t mean we can just lift ideas from these other cultures but they do give real-life examples of how these abstract concepts can work in day-to-day life. Personally I have been very inspired by and influenced by Buryat Mongol belief and custom, especially because they themselves are often eager to share (reminder that it not being strictly “closed” does not mean that inappropriate appropriation is not possible). Buryat Mongols recognize three “souls,” each of which go their separate ways at death. One becomes a nature spirit, one which goes to the underworld and is eventually reincarnated, and another which becomes a bird on the world tree which is also eventually reincarnated (but, if I understand correctly, not along with the soul which had gone to the underworld). Among many such cultures going to the gods in the afterlife is a possibility, but a major exception to the norm. The reason I find this so interesting for this conversation is that if the Norse believed something similar, it would explain why our sources are in such conflict, how people can be going to Hel and living in the mound at the same time, how Helgi Hundingsbani can go to Valhöll and be reincarnated, etc. If you’re interested in learning more about Buryat Mongol belief try the site I already linked and also the works of anthropologist Katherine Swancutt (note that the families she stayed with had complete agency in determining what and how she would share what she learned… she talks a lot about this in Fortune and the Cursed: The Sliding Scale of Time in Mongolian Divination).

This next part is gonna be even more opinionated than what I’ve already written. I think it’s tempting to believe that people get what they deserve in death. That people who are treated unfairly in life are compensated in death and that those who were unfair themselves get their comeuppance. But to my mind heathenism lacks a mechanism for identifying or producing desert. That means it’s up to us, the living, and maybe those dead who continue to exert an influence on the world of the living, to vindicate those who were oppressed, or robbed of a good death; and to mitigate the legacy of unfairness. I do not believe that “the universe” or “wyrd” or whatever punishes wrongdoing – not because it wouldn’t be nice but because how exactly is that supposed to even happen? Do we really want to rely on gods who often act immorally themselves and use their supernatural abilities to exert their wills, to judge us? We might ask for their help, but we shouldn’t leave it in their hands. It would be great to take the burden off of ourselves but for better or worse, that’s where the burden is. This concept is a major spiritual informant to my belief in social justice, it’s (among many other things) a way to achieve a symbolic (and restorative, rather than retributive) equivalent to the social role of blood vengeance, for people who faced oppression. And what’s more, if we’re prepared to accept the possibility of reincarnation, then it actually is helping ourselves as well as our dearly departed awaiting rebirth in the underworld to make the world a better place for future generations.

Finally the last thing I want to say is that all of this is just theory. Not believing it doesn’t make you not heathen. We don’t have a Bible, there is no centralized authority, nobody living a thousand+ years ago was totally sure what happened in death – the lore we have received is just whatever models they came up with that best explained their experiences (probably especially mystical experiences of religious specialists, but still) and informed their behavior. For that matter, plenty of this shit is probably Christian speculation about what heathens believed anyway. If you have reason to believe otherwise it isn’t “un-heathen” to trust in your own ability to reason. Like, I think I did an alright job of framing my distaste for Valhöll in heathen discourse which just means it’s a productive set of religious beliefs that’s capable of autocritique. A person can’t possibly read the sagas and conclude that everyone agreed with each other all the time; variation, dissent, and creativity are generally speaking all good signs.

Hope this helps.

P.S. I know there are a lot of people who see entrance to Valhöll being granted to anyone engaging in struggle, whether physical or otherwise. I don’t agree, and if you’ve read this far you know I haven’t factored it into my understanding at all. But I don’t necessarily have a problem with it. I think it comes down to the active conception of “violence.” I do not believe that violence is strictly an act of causing physical damage to a person or object in a single event. I think that rearranging Valhöll to conform to a modern conception of violence that also includes systematic oppression is a literally incorrect way to interpret it according to Old Norse religion – but fuck it, my opinion of Valhöll is low as shit, so do whatever you want for all I care.

[fairygothmothercat]

Cancer and depression and my life

I have not been speaking openly about it on social media. Though I might as well here since very few people actually follow me anyways. Tumbler has turned into my vent and rant place basically because no one ever responds or says anything about my Tumbler posts lol. Facebook is a whole different creature. We all know someone who has or is battling cancer. It effects many people. My grandfather battles Leukemia right now. My mom had it, my grandmothers, grandfathers, aunts and uncles and some friends I have known or their family. So it was a matter of time when it would strike closer and well as my mom before me and her mother and grandmother I am susceptible to many of the cancers that our female family members have survived or succumbed to. Breast, cervical/uterine, colon cancer are all things that have been a fight. My grandmother on my moms side is a 2 time survivor of colon cancer. My other grandmother from my dads side passed away in 2009 after her battle with lung cancer. She had technically beat it or it was in remission but the chemo had wiped her immune system out and a infection took her from us. Its still one of the most painful losses in my life as I was very close to her and as someone with very few I trust or love and could talk to it left quite the hole in my life. My first fight is now with Cervical and uterine cancer. It has been found in its early stage and as far as the Drs see its pretty localized and operable. It could be more spread like my mothers but hers still was operable by hysterectomy which is removal of the uterus and cervix. In my case they are not opting to remove the entire organ unless they see anything that prompts them to or complications arise. I will be having most the cervix removed and part of the lower part or neck of the uterus. Honestly I rather have a hysterectomy. I can not have kids or want so theres no point in saving it but the Dr believes this should be sufficient for now. I will require regular examinations and biopsies to make sure it never returns or spreads. So the prognosis for now seems good and the piece of me being removed is not crucial for my survival so I do not have too many heavy worries. I just do not look forward to the pain, discomfort especially in the region being operated on. Of course I looked it up and watched it on youtube so I now know how brutal the procedure looks. I know people say you shouldn't do that but I like to know what to expect even if I am not conscious.I did not need to have a baby for my poor vagina to end up getting wrecked lol. Of al places though its not cool its there. Add to it cutting a month out of my life to recover in summer so no swimming or doing much of anything. I am grateful I moved to Germany so I could afford the healthcare I needed in order to have less worries when it came to these things and my health in general. I worry for my aging parents who stand to lose the healthcare they have thanks to the current government and their quest to make the rich richer at the expense of the poor and vulnerable. Though I do not want to get into politics here. I still just know I am fortunate to now have access to good healthcare and finally have been able to pursue the treatments I need for my chronic illness which has caused me bad sight, bad hearing and weight gain among other things. I was born with these things and until I was 18 I got treated for only one single thing through a special program but that was not enough and after I turned 18 I was left uninsured until I was 27/28 and got medicaid which was still pretty limited. Though now I go through my cancer treatment and I do not say much. I do not look for sympathy or attention. I been accused enough about seeking attention and shit like that. Other people can make a song and dance about stuff but I seem to be expected to deal with it on my own. Which is what I have always pretty much done all my life. I never pushed my burdens on other people in my family or friends. I rarely ask for help. My husband and a few people know of whats going on. I will get my treatment and spend much of my recovery alone which is ok. I am getting used to and starting to embrace my loneliness and isolation. I might be too honest or real for most people to handle anyways. My openness and genuine nature seems to put people off. It has widdled me down to being more reserved these days and more cynical and cautious even more nihilistic and pessimistic. I sometimes think if it were not for my mom, my husband and a few I can count on my hand that actually care I would have been ok to let the cancer take me away. I would not want to hurt anyone. Its not to say I do not have a desire to live. Sure I struggle with bipolar and depression but I do have many reasons and many things to live for. Its just sometimes dealing with the pain both physical and mental that are draining. I can have professional help and swallow pills but it is not the cure all. Recently a prominent outspoken youtuber Stevie Ryan who also suffered and spoke about mental illness just committed suicide. She was my age but she was healthy, beautiful and successful and still she lost the fight. It can be worrisome for me. I am a lonely mostly shut in person whos been rejected for various reasons. Hardly successful either and codependent. Twice divorced, survivor of childhood trauma, abuse, sexual assault. I have social anxiety, low self esteem and some confidence issues. It might seem when I am dressed up and covered in makeup that I am strong and confident but it is just the shell of a lonely, hurting girl who yearns for acceptance, love, health and happiness. Sometimes I find a glimmer of it and it keeps my hope and many other times I am mocked, rejected, stabbed in the back, accused of ridiculous things and excluded. When I have said anything of my struggles I get accused of looking for sympathy, attention and people who say they will be there or you can talk to simply vanish over a few posts talking about the struggle on facebook. Thats a recurrent thing. Its often those who say you can talk to us or come to us and post about these things to help friends and whatnot that usually seem to do the complete opposite. At least in my own experiences. They say go get a therapist. Well even if I had one the underlying issues contributing to my crisis just do not magically go away. I might be able to cope better drugged up but I been through therapy most my life and rehashed the same sad history and story of my life to several professionals. Its a bandaid. Its help yes but sometimes the real help is having people close that pay attention and can hopefully help prevent tragedy by recognizing the symptoms, behaviours and needs of the one suffering. Its likely Stevie even had a good support system in place but the loss of her grandfather while being depressed pushed her over. I been there.The loss of my grandmother led to a downward spiral and attempts to end it. I was hospitalized and then my divorce happened and I left and drifted around alone to escape the place of so much trauma, drama and pain and seek a new life and identity. I spent birthdays and Christmases alone without family or anyone and a crap short lived relationship had me seeking a final end to my suffering. Another mental hospital stint from overdosing and then more people leaving me because understandably they did not want to hurt so distancing themselves from me was their way of coping. I am now in Germany and well here I am. Trying to hold on to optimism and hope. I usually paint much rosier pictures on facebook and social media but the truth is I struggle and suffer and do my best to take each day at a time and be grateful and show it to those who show me kindness. I accept the fact not everyone will like, love or get on with me. Sometimes I wish they went about things better but thats just the way things go. some might call me a snowflake but I am more like a snowball. Alot of stuff packed up and then thrown to burst into pieces and then gathered back up and sometimes theres less and sometimes theres more but I feel like I get thrown around alot and smashed or melted and sometimes dirt, rocks and stuff ends up picked up along the way which makes me ugly and potentially hurt others if hit. I never seek or intend to hurt others. In fact I never done anything serious or bad to others. It usually comes down to simple misunderstandings of my intentions or meaning or some ignorance and simple mistake. I think most would be forgiven of these things but usually in my case one little mistake costs me friendships and I could apologize until blue in the face but its no use. Sorry for the long rant. so much on my mind and typing is easier than writing a diary. My rheumatoid arthritis makes writing these days a bit painful and difficult. I have few outlets to express myself as well. Tumbler might not be the best place but so far its proven to be one of the only few I can ramble on and it seems so far no one bothers, or responds so I can type walls of text and play my own therapist at times. Tomorrow I go in surgery. Was not the surgery I hoped for. I was hoping this time I would be having weight loss surgery but it is further delayed. Just another long rant for another time. Other than that I still kind of try hoping I will be able to continue on and that I can have a few of the simple things in life like some good friends and better health.

[arabellaflynn]

I remember predicting when we moved into this place that I'd spend my bad days sitting in bed, staring out the window at Dorchester Bay. Right now I'm staring at where the bay would be, were it not for the intervening fog, but otherwise my guess seems to have been rather accurate. My left hip hurts. I'm not sure if it's something in the joint or in my lower back that's objecting, but it's doing so vociferously. It has the same peculiar electric quality as the moment you bash your funny bone, or bite down on tinfoil with a metal filling. It's not the dull throbbing red ache or the sharp stab of having actually injured myself; it's the pointless pain of a nerve that is holding a grudge over something, possibly something imaginary, and doesn't want to let go. It started before Arisia, but I had a show to do, so I ignored it until I noticed it was starting to make my gait go funny on stairs. Funny thing about neuropathic pain; even if it didn't begin with you actually injuring something, your body responds as if you had, by knotting the muscles around the sore spot in order to protect it. I wanted to put my foot sideways and tip my knee in so I could pull myself up stairs with my thigh rather than push from behind, even though that did nothing to change the way anything felt. Survival instincts are odd sometimes. In any case, walking cockeyed like that will eventually do real, tangible bad things to your knee. So I made myself locomote normally until I got home from work on Friday. I made sure I had nothing to do over the weekend. I think I had a peanut butter sandwich for dinner. And then for the next two and a half days, my meals consisted of tea and painkillers, because fuck me. Certain kinds of movement help, but shockingly enough, there is a limit to how much hula hooping I can do in one go. I don't know what it is, because I make myself stop at the end of the movie, but I assume this limit exists, especially when I'm getting most of my calories from instant Thai tea mix with "cream" (read: dried milk solids and non-dairy coffee creamer powder) and sugar (amazingly, real sugar). I've spent most of the rest of the time trying to pull my left knee over my right shoulder. Me being me, I am having an unreasonable amount of success at this, but can't get anything new to pop, so as soon as I let go it goes right back to hurting. People ask me, "How much does it hurt?" I don't know. More than 'ouchie' and less than 'I can't stand up'. The standard pain scale that runs from "happy face" to "crying frowny face" isn't very useful for chronic things. It's more good for acute pain of recent onset, where you can compare how much something hurts now to how much it didn't hurt before. If you were fine 48 hours ago and now you're doubled over and begging for a morphine smoothie, that's important diagnostic information. If it's hurt the same for a week and a half... maybe that's normal? Who knows? This is more useful. It ranks pain by how much it affects your ability to function, rather than how it 'feels'. This is something I can note intellectually even when my internal monologue is mainly reminders to smile at others, interspersed with a lot of free-floating, family-unfriendly words. I have a rule that says I am allowed to think whatever I want, as long as I behave like a civilized human being. I routinely do not notice how much something hurts until I realize that, while I've been physically negotiating the T like a normal member of the herd, I have been fantasizing about kidney-punching every. single. person. in front of me until the fucking crowd fucking moves fucking faster go just go what is the fucking matter with all of you JUST GO. According to that chart, I have learned how to compensate for up to about a 6.5. I don't know how seamless it is; I can't tell from inside, because it is an altered state of mind, and it's distracting when every other thought you have is ow fuck i want to go home. Probably if you knew me well you'd notice I wasn't the zippiest I've ever been, but for people who aren't accustomed to me and my big mouth, it would be undetectable. I hit 5 regularly, usually with musculoskeletal stuff that makes moving uncomfortable. I kept putting off a trip to the supermarket, because while walking down to the T stop would be moving and therefore better, exiting both the house and the station at the other end would involve stairs, and being on the train would mean sitting or standing still for a while, both of which made things much worse. I can do certain things up to about a 7, especially if nobody bugs me to take my hat or sunglasses off. (Those are usually either from migraines or eventually bring one on, so light is my mortal enemy.) I have to be given time to make a plan, and then allowed follow through on it without any interruptions or alterations. I don't have enough capacity to recalculate if something changes, or make any new decisions, however small. If you try to force me to do either of those things, I deadlock and fall apart. Being sick will also grind me down that far. I remember a time, years ago, when I had the honest-to-God flu, and a roommate who was trying to be nice asked me if I wanted her to leave the windows open or closed when she left for work. I hauled the blankets over my head and wailed at her not to make me responsible for the state of the windows. Around 8 is when I start bowing out of plans on the grounds that I am 'sick'. At that point I am not physically capable of giving a shit about consequences anymore, so I just send out cancellation messages and go to bed. You could set the house on fire around me and I'd just curl up tighter in bed and think 'huh. fire now. okay i guess'. A guy on reddit recently illustrated how depressed he'd been in the past with the story of how a guy with a gun jumped out at him one night and demanded his wallet, and he just said, "No." The mugger was very confused and eventually went away, but the point wasn't that he was stalwart or brave or fierce; it was just that was in such a state of shutdown that he had no feelings left one way or the other about being shot, and lacked the energy to be robbed properly. [I don't recall ever hitting 10, but I may have hit a 9 when I was five and broke my forearm. The part I do remember is that they kept giving me IM Demerol, and I kept telling them it wasn't doing anything. They finally topped me out and had to set the bone no matter what. I don't recall that specific chunk of the night, which is probably a thing my brain has done on purpose. I'm told I went dead white and nearly passed out. I definitely hit a 9 the time I cracked a molar and exposed a root, which was infected by the time I could afford to go to the dentist. It is the only time I have ever seriously considered banging my head against the floor until I passed out, because the initial bottle of Vicodin and the later bottle of Percocet did not work. I coped by sleeping as much as I could, titrating myself full of NSAIDs, and knocking back DXM until I was no longer aware of having teeth.] People also ask me why I keep doing stuff, if things hurt 'that much'. Firstly, define 'that much'. Nobody ever tells you when that is, or gives you any good criteria for deciding for yourself. If you're sitting down, it doesn't hurt 'that much' and you're a lazybones who should be working like everyone else. If you're still doing things, then it's your fault for not taking care of yourself by sitting down when it hurts 'that much'. I do it for the same reason I walked home last night festooned with four bags of groceries and two hula hoops, in sleet and wind gusts of up to 40mph: There isn't another option. I was at the T stop. I needed to be at home. So I walked. It was unpleasant. Lots of things are unpleasant. You learn very quickly that your feelings do not matter. The universe is a cold sociopathic kidnapper holding a gun to your head and telling you that you will do the thing or you don't get to survive. So you do the thing, and shut the fuck up about it before worse happens. If you're incapable of doing the thing, you might get mercy the first couple of times, but it's at the whim of your captor. Someday they're going to run out of whims. You trudge home in the sleet anyway, in case that that day isn't today. I hope that didn't sound inspirational. It wasn't meant to be. I am incredibly cranky right now, and that was meant to be an illustration of my current mood, and why I have given up and decided to just spend the day in bed crying. I do not do things while I am in pain because I am strong or courageous or whatever. Don't kid yourself. I do things under duress.  from Blogger http://ift.tt/2juazKg via IFTTT -------------------- Enjoy my writing? Consider becoming a Patron, subscribing via Kindle, or just toss a little something in my tip jar. Thanks!

[ableaustralia-blog]

MY DIAGNOSIS STORY, PART I

Multiple Sclerosis, Clinically Isolated Syndrome or Complex Chronic Migraine?

You may have heard that multiple sclerosis affects everyone differently and when you add that into the complexity of diagnosing neurological disorders and diseases, the diagnostic process can become very confusing and downright stressful for the patient. My diagnosis story is still continuing and is extremely complex but I wanted to take the time to share it with you because if I had been able to find more information on Clinically Isolated Syndrome MS then I feel the process could have been less stressful for me. Most of the information you do read about CIS MS is that it’s fleeting, you are supposed to have one episode of symptoms that resolve and that is a classic presentation of CIS. However it is not always that straight forward and I am living proof of that,  I know I am not the only one. Here is my story.

It began in September 2016. We had just moved out of our first family house and were staying with my in-laws temporarily until our interstate move that we had planned for January 2017. It started over a few weeks of getting some headaches, I just put them down to drinking too much coffee to finish my work deadlines. At first the headaches were mild, just enough to cause irritation. Then they began to become more of a problem and I started taking some painkillers. I was just writing them off as not drinking enough water and all the normal causes. Until finally, I was working one day and by about lunch time the pain was becoming more intense. I decided to leave early, I picked the kids up and headed home. I remember driving and every noise my kids made was like someone was stabbing me in the brain. I also remember driving and thinking I don’t even know if I should be driving. By the time I made it home, only a half an hour drive mind you, I had tears rolling down my face from the pain. I stumbled through the door with the kids, then headed straight to take some painkillers and lay down. Luckily my husband was home early from work and he immediately called the doctor. I remember saying to him, it’s fine I’ll just take something for it. He describes this whole scenario as me falling through the door like I had been shot. And that was the start of the full blown, debilitating chronic migraines that I suffered for nearly 10 months straight. We are talking 3-4 migraines per week, most of which lasted 2 days so pretty much a constant of migraine or on a good day, bad headache. Once my husband arrived with me at the doctors, they immediately ordered me an MRI for the next day. At this stage, I simply just thought I was having bad headaches and they were doing the MRI to rule out anything sinister. Secretly I was terrified though, my father died from a brain tumour. Even though they aren’t hereditary, it was still a terrifying prospect. So the next day, I went in for my MRI.

There is something about the very first time in that tube that is completely overwhelming but honestly this first one, I think I was kind of numb. I don’t remember thinking anything was actually wrong but more that this was one of those routine rule-it-out type scenarios, maybe it was just denial. It wasn’t until I got a call from the doctor after hours and they asked me to come down right away. I knew something was wrong but I just had no idea what. “Several T2/FLAIR hyper intense foci within the deep white matter of both cerebral hemispheres have a periventricular distribution with at least one juxta cortical lesion in the right frontal lobe and two periventricular lesions (right peritrigonal and left occipital region), suspicious for demyelination. No diffusion restriction to suggest the presence of active plaque or recent ischaemic event. Further imaging of the cervical and thoracic cord recommended to assess for further plaques.” The doctor explained that the most common cause of demyelination is MS. To be honest, I don’t really remember what he said after that. I think that’s the shock part kicking in. What I do remember is this one big white spot, there was other smaller ones but the one big one was what worried me.

When I got home, my husband asked what the doctor said and I just burst into tears. I couldn’t even say it at first. There was a lot of tears that night, I tried to stay composed but I just couldn’t. I was terrified, mostly because of the uncertainty I think. I remember trying to get it together to call my Mum and as soon as I heard her voice, I pretty much blurred out “lesions on the brain” to which she had a meltdown and we had to call each other back once we calmed down. I do remember at first we thought of lesions like little masses or tumours which is why my Mum didn’t cope at all. Boy, did I google the hell out everything in that report. Everyone says you’re not supposed to google with these types of things but for me, information is power. I wasn’t trying to diagnose myself but I was trying to understand what they were looking for. Understanding the diagnosis process was helpful to make the whole thing a little less scary. Definitely working out that the lesions were not little tumours was a big relief.

I was sent for a C-Spine MRI the next day. I was scared now. I had a nasty migraine this time. The whirring and banging was absolutely agony and every time I shut my eyes, I would get the most intense vertigo which meant that I had to keep my eyes open this time. I don’t know if you’ve ever had an MRI before, but for me the key to surviving them is shutting my eyes and trying to pretend I’m somewhere else. So having to keep my eyes open for this one when I was already feeling scared and sick was not ideal at all. By the time I came out, I got intense vertigo when I sat up and it took me awhile to be ready to leave. This MRI was done late on a Friday afternoon, we then got to wait three days before we could get the report on Monday afternoon. My C-Spine results were clear. While this was amazing news, it also made everything very confusing because now it became a case of “Is it Multiple Sclerosis?” I was then referred to a neurologist. I was absolutely terrified about what was going on with my body, I could feel the changes. When I say that, I’m not just talking about the symptoms - it was bigger than that. My entire body just felt different, like I just wasn’t myself anymore. All I know is I wanted to get to the bottom of it, I needed answers. So I booked in with a private neurologist rather than waiting for one in the public system. I began writing everything down, every little thing I noticed going on. The list got pretty huge pretty fast. I was getting severe headaches daily and the fatigue was starting to really kick in.

About five days before my neurologist appointment, I got what I would describe as really severe restless legs one night. It was like a tingling and burning sensation, my legs were so unsettled that I couldn’t sleep. Little did I know, that feeling wasn’t going to go away. I woke up the next morning with pins and needles through both of my legs. I also started to experience some numbness in my lips. Later this day, I was driving and was in a situation where I needed to use breaks relatively fast. It was almost like my foot had a tremor, like I told my foot to put the break on and it didn’t respond. Luckily at the last second it did and I was okay. I remember driving straight to the doctor and being completely freaked out. The doctor didn’t really understand what I was saying and to be honest, I think he thought I was overreacting. I also told him about the leg pain the night before and the continuing pins and needles which still hadn’t gone away. I remember him telling me that it doesn’t necessarily mean anything unless they don’t go away. I walked out of the doctors office and just cried from frustration. I knew something was going on but it was so incredibly difficult to explain it all. I actually felt crazy. The next day I woke up and the tingling had moved to my left arm and was still in both of my legs. I also started to experience some tingling across my head, muscle twitches and I started to notice I was becoming quite clumsy.

It was time for my neurologist appointment. My sister in-law came with me to my appointment. I am so glad that she did. I highly recommend taking someone close with you to your first appointment. It’s such a huge amount of information to take in. The main thing I remember from the appointment is that all that feeling crazy went away. The neurologist took me seriously. She went through all the notes I had been taking and she understood when I was trying to explain the weird things that were happening. From the outset, she was convinced it was MS but explained that there wasn’t “enough” on my brain to confirm that it was MS. She basically explained that we would need to wait for more to happen on my MRI to confirm it but based on my symptoms and my neurological exam, she believed we were dealing with MS.

“The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (DIT) and to different parts (DIS) of the central nervous system. This distinguishes MS from other neurological conditions.”

Read more about diagnosing MS at https://www.mstrust.org.uk/understanding-ms/diagnosing-ms

So at this stage, I don’t fit the McDonald Criteria for MS as I have only one attack (the current one they are seeing me for) and I only have damage to one part of my central nervous system. Now it’s really a matter of ruling out all other possible conditions and waiting for another attack to show up on the MRI. She scheduled another MRI and a massive amount of blood tests to help in ruling out other circumstances. The bloods included liver enzyme tests, rheumatoid factor, C3 & C4, ANA, CRP, ESR, ENA, dsDNA, ANCA, TFT, Folate, B12, TPO antibodies, Varicella Zoster & Vitamin D. She also explained that we could do a lumbar puncture but they can be really nasty especially for people with migraines and my age so she only wanted to do that if it was totally necessary.

Over the next week after my appointment, I started experiencing some new symptoms including extreme heaviness in my legs, full blown fatigue (couldn’t stay awake) and brain fog. The tingling had moved into my face, across the top of my head and through both arms. I started to get crawling sensation across my legs to the point where I would have the check I didn’t have bugs on me. I would get this really strange sensation where I would get shivers on the left side of my body only, literally could draw a line down the middle of my body and the shivers were only on one side. My vision would get quite blurred at times and I started to experience pain behind my eyes. I also started to get what I would call tightness in my chest and sharp stabbing pains in between my shoulder blades but I now know that it was the MS hug because I still get it regularly. I started to get more physical symptoms such as feeling weak, shakiness and feeling stiff when walking. I started to get stomach issues such as cramping, bloating and diarrhea which was definitely from the copious amounts of pain killers I was taking but when I tried to just take panadol, it didn’t even touch the sides.

About ten days after my appointment, I had my follow up MRI of both brain and c-spine which was about a month after my first MRI’s. My follow up appointment with the neurologist was about two weeks after the MRIs. The MRI had some minor changes but not enough to reach a diagnosis. The neurologist conducted a nerve function test which was clear and meant I didn’t have peripheral neuropathy causing the nerve issues. She commenced me on Endep to try and get my migraines under control and a migraine plan of attack. Take x and x for mild headaches and so forth. She also gave me scripts for migraine meds and a stomach protector to take alongside the nurofen. We decided to go ahead with the Lumbar Puncture in hopes that it might have some answers.

As I was seeing a private neurologist, I had to organise my Lumbar Puncture as an outpatient with the private hospital. It was done in an X-ray room and was done by guided X-ray but that still didn’t help. This was the most painful experience. Many people talk about not feeling anything when they have a Lumbar Puncture done and I was hoping for that outcome. The doctor doing my procedure, struggled to get enough fluid and had to move the needle several times. Every time the needle was moved, I had the most intense and painful electric shocks from my spine down to my toes. It was absolute agony. Then I was kept for two hours laying flat which they do to avoid you getting a post Lumbar Puncture headache. I felt a bit dizzy but mostly okay when we left. But within about two hours of getting home, I started experiencing literally the worst headache of my life. The only way I could alleviate the pain was to be laying down.

“Spinal headaches are caused by leakage of spinal fluid through a puncture hole in the tough membrane (dura mater) that surrounds the spinal cord. This leakage decreases the pressure exerted by the spinal fluid on the brain and spinal cord, which leads to a headache.”

We went straight to the hospital, where I ended up staying for about 5 days. There was discussion of a blood patch but it was decided that the risk of making it worse was too high. I did make a fully recovery without intervention but it took about 7 days before I could sit upright again but once I could then it resolved very fast. When conducting a Lumbar Puncture for MS diagnosis, medical professionals are looking for oligoclonal bands (which is an indication of inflammation) in the spinal fluid and compare them to bands in your blood. If there are different bands in your spinal fluid and your blood then you may have multiple sclerosis.

I had a follow up appointment with my neurologist a few days after this so she could check up on me after the LP complications and also give me my results. The end result of my Lumbar Puncture was that there was a significant amount of blood in the sample and it wasn’t conclusive enough for a diagnosis. However given the severity of my symptoms, they were getting worse everyday and the appearance of my MRI lesions. My neurologist decided to start treatment for multiple sclerosis, she explained that she was 90% sure it was MS but just didn’t have the clinical findings to fully prove it yet. At this stage, it would be Clinically Isolated Syndrome Multiple Sclerosis, at least until a second attack happened. She wanted to start the safest of the MS treatments, Copaxone because it doesn’t suppress the immune system and therefore wouldn’t cause significant problems if it turned out to be another condition causing my symptoms.

My symptoms included:

Chronic Migraine & Headaches

Severe Fatigue

Pins & Needles - in different areas of my body at different times

Altered Sensations such as crawling, shivering and feeling like you have water running down your legs

Heat Sensitivity

MS Hug - like a band of tightness around chest and I also experience stabbing pain between the shoulders when I get the MS hug

Nerve Pain - Shooting pains in my arms & legs

Muscle Twitches & Stiffness

Blurry Vision

Tinnitus (Ringing in the ears)

Vertigo

Brain Fog

I started Copaxone and then around two weeks later, the tremor in my hands started. Alongside the tremor, I became significantly more clumsy too. For such subtle symptoms, it actually terrified me. Something about this affecting my hands really scared me as to what the disease is capable of. I remember feeling crazy like I was overreacting but I knew something wasn’t right so I kept taking my notes for my neurologist. The hand tremor continued for a few days and the nerve pain was becoming more severe despite the Endep prescription being increased, I was on 25mg at this stage. I called the neurologists office and went back for a follow up.

At this follow up she ordered another MRI, to try and “catch this” on the scan. Also I have had sensorineural hearing loss (damaged hairs on my cochlea) since birth but given the severity of the tinnitus alongside the other symptoms, my neurologist ordered a hearing test to check if any changes had happened to my hearing to help rule out other possible neurological conditions that could affect hearing too. My hearing test was all clear but something crazy happened during the test, while in the isolated room and listening for the specific sounds - they set off really intense vertigo and even the audiologist couldn’t explain it. The brain is such a fascinating thing and when it’s not working properly, some crazy things really start to happen. I went for this next MRI on the 22nd December, good timing eh? But to top it off, my family and I were all packed and ready for our interstate move right after Christmas. Being the impatient person that I am, I went back to the hospital where I had the scan and picked up the report the day after the scan!

“Five-six lesions within the brain in a typical location for demyelination which would be in keeping with Multiple Sclerosis. Probable one new lesion seen just in the left centrum semiovale region posteriorly, otherwise relatively stable appearance”

Merry Christmas, you’ve got Multiple Sclerosis.

The interstate move, the stress of the diagnosis and the heat of Australia summer (I think it was around 35-40 degrees at this time) really knocked me around. I ended up taking myself to hospital a few days after the move. They really didn’t take me very seriously at all and they attributed everything to heat and dehydration although IV fluids and stemitil they gave me did nothing. I felt extremely frustrated and helpless but I just assumed that this was life with MS and that you just had to deal with it. At this stage it was mostly headaches, the other symptoms seems to have calmed down a little. So I just pushed through, I took mountains and mountains of paracetamol and ibuprofen over that following month.

Then all the symptoms came back with a vengeance but the pain was worse, I had pain behind my eyes and the migraines and headaches were out of control. We are talking daily migraines, painkillers every four hours and completely not functioning. My balance was really off, my hand tremor was back, nerve pain, brain fog, muscles twitching and blurry vision. After a week of this pain, I had no choice but to go back to the hospital. They increased my Endep dose yet again, now I was on 50mg. I was also given a script of Endone to help me get through the pain until the new Endep dose kicked in. I had a follow up appointment with the MS clinic at the hospital a few days later and they scheduled an MRI Brain & C-Spine. Over the next three days, the pain kept intensifying. It got to a point that 6 paracetamol, 6 ibuprofen, 2 rizatriptan and 2 endone still didn’t take the pain away. After a very restless night of pain, I woke up with a blind spot in my left eye. So off to hospital I went again, at first the neurologist who examined me essentially said he wasn’t even sure if it was MS and I’m not if it was terrible bedside manner but he essentially blamed it all on stress around the diagnosis. I didn’t realise at the time how huge an impact stress can have on chronic illness so it really upset me to be made to feel crazy yet again. Despite all this, I was admitted for further testing.

The head neurologist ordered a whole battery of tests to essentially come up with his own diagnosis despite the report I had received. The first eye test confirmed that it wasn’t optic neuritis but that the blind spot was there. They took me off the Endone as the head neurologist said it would only be making my migraines worse and cause rebound headaches. I was still really unsteady on my feet, I could barely hobble from the bed to the bathroom. Over the next few days, they conducted some more complicated tests on my eyes, I lost count of the blood tests and they also gave me an MRI with contrast. The scan showed no changes from the scan in December. They summarised that the eye issues and the balance issues were caused by a flare up of my chronic migraines but not a flare of my multiple sclerosis. “I didn't realise that you could have a flare of chronic migraines that made MS symptoms worse but I'm really glad it wasn't a relapse and MS appears stable”. To be honest, my neurologists have been quite elusive about my diagnosis throughout the entire process and guess that is because multiple sclerosis diagnosing particularly in the early stages is extremely difficult. They explained to me that since my lesions are fairly minimal and that I commenced Copaxone so early in the diagnostic process which would ideally halt it’s progress but also halt further relapses and as such delay definite confirmation of the disease if it was working.

If you are going through a diagnosis at the moment, I hope my story has helped you. Multiple Sclerosis is such a tricky disease to diagnose, it presents itself in so many different ways and can be incredibly confusing to understand in the early days.  I would love to hear your diagnosis story, please feel free to share in the comments below. If you’re struggling with getting a diagnosis, please feel free to reach out to me as I know how agonising the process can be. Please stay tuned on my Instagram as I will be sharing where I went from this stage of the diagnosis, how my symptoms progressed and what triggered me to begin my healing journey.

[aquarianlights]

I need you to know, you matter. Your posts have made me feel like I'm not alone in this world so many times. Please know that you make an impact on this world by just being who you are.

I...cannot even begin to describe how this made me feel. I am so goddamn discouraged right now and I just... the joint pain I am experiencing is unreal. But heavy doses of Lyrica impact my ability to function...I’m having anger-induced black outs which...apparently anger is normal when you first get diagnosed with a chronic pain disorder or anything that changes your day-to-day life significantly that you cannot fix. I read a whole book on it yesterday...how the anger is normal. But having black outs due to that anger is apparently not normal, so...Idk. And I’ve been feeling so much less and less motivated to get through the day. . .After I’m awake and I get up and get coffee, I’m okay. But actually waking up (if I take meds to go to sleep, otherwise I won’t sleep at all) is.....it’s... it hurts? Does that make sense to you or..anyone? When I wake up, all I want to do is writhe in bed and cry and fall back asleep, but I know if I try to go back to sleep, the second time I wake up, I will be nauseated so when I’m up, I have to get up to avoid intense nausea. It’s hurting to wake up and I don’t want to be awake anymore...but then I get going during the day doing things...and I start to feel better...But unless I’m studying medicine or doing “adulting”-esque things for the day that go above and beyond the normal. . .I don’t feel a passion or need to exist. But I don’t want to not exist either...maybe I do. I don’t know anymore...I kind of want to give up and die but then other times, I just say “Fuck this. Fuck everyone. Fuck myself and my negativity. I’m gonna do all of this and prove everyone wrong.” And I mean, I always succeed when I say that and I’m having to use less and less valium...I’m experiencing less and less panic attacks...I’m able to do so much more than I could even a year ago...But it’s not enough in my mind despite the fact I’m doing a neurotypical taskload everyday...sometimes even moreso than your average neurotypical. And some days it feels effortless...other days it feels like it’s the end of the world if I spend another 24 hours on this planet... I don’t know.. I feel... I feel hollow. I feel like my soul has been ripped out of my body and pinned against the wall and forced to watch me struggle to get out of bed (both physically and emotionally/mentally/psychologically) every day. I feel like I lost something....something very significant... Yet, I don’t feel like there was anything left for me to lose at this point. Everything just feels so...hollow. Like I’m neither living nor existing... I feel nothing or everything. Sometimes both simultaneously. And that makes no sense and no one is going to understand that but it’s...it’s...infuriating and frustrating and makes me feel this white hot anger bubbling in the middle of my chest. It’s hard to breathe sometimes. Physically hard to breathe. But not in a ...chostochondritis way. Or a pre-panic attack way. It just...it just feels like someone or something is ripping the air from my lungs piece by piece. It feels like someone poked a bunch of holes in my lungs and are now slowly siphoning the air from my lungs little by little through those holes every time I take a breath of air. And there’s this heaviness on my chest...all the time...no position alleviates it and Idk whether it’s physical or mental or both or related to my chronic costo...or what...

I feel passion and fire and drive and determination and all these wonderful things in such extreme doses......but I also feel defeated and dehumanized and demoralized and like maybe it’d be so much better for EVERYONE involved if I just fucking gave up and let go...

I feel like there’s this heavy weight attached to me following me at all times. Like. . .Like a balloon filled with lead that floats... Multiples of those balloons...tied around my throat and wrists and waist and ankles...just...dragging along behind me... giving me this feeling like something is going to happen...something very bad. I feel imminent threats and danger all the time...and I feel like something is pushing me towards a pool filled with tangible defeat. . .and like I won’t be able to stop them from pushing me over the edge and into that pool. . .and like tangible defeat is like quicksand where...if you struggle, you get pulled deeper and deeper in...but if you stay still and calm and accept your fate...you can eventually get out yourself or have someone help you out. But my fight or flight response is SO strong and in that situation, there’s no doubt my system would choose fight despite me wanting to choose neither. So I would struggle and struggle as this thing or person is standing on the precipice...watching me drown in tangible defeat... And it would swallow me whole.

I feel like that is destined to happen in this linear timeline...and that it is so soon. I have come back from SO much in my life...I have come back every goddamn time. I have struggled and made waves in this world... But... It feels ... It feels like that’s not enough. I’m doing something wrong. Or maybe there’s something inherently wrong with me and my mind? Maybe both.

It almost feels like psychosis. Like...Like I’m watching from the outside in... Not dissociation. It doesn’t feel like that. It feels like I’m trapped in a room and that room moves with my tangible body............okay, I guess I’m not describing anything in any way that anyone can comprehend right now. . .

Everything is so conflicted in me. I think it’s just a major flare up of BPD like I’ve never experienced before because all psychs have said I’m a textbook case of borderline and that I am an extreme version of borderline..But I’ve never experienced ANYTHING like this.

This isn’t depression. This isn’t anything akin to depression. I know what depression feels like. I know what suicidal ideation feels like. I lived with both for 24 years. I KNOW this isn’t anything akin to depression/MDD. This is SO MUCH stronger and so much worse than that. Honestly, I would rather just...be straight up suicidal again rather than dealing with these extremely intense, overwhelming swings of passion to defeat. I can go from 0 to 100 back to 0 back to 100 in like...a second flat. I go between “I can do this! Fuck everyone! I’m a fucking demi-god, bitch. Positive vibes. I can do anything. LITERALLY ANYTHING.” to “I can’t do anything and I am the most worthless creature on the planet. . .but I can’t die...and I need someone to kill me.”

I genuinely considered finding a cop and approaching them and from a distance telling them I was armed and that if they didn’t shoot me dead, I would I stab them or threaten them in some way. And if they didn’t believe me, I’d whip a knife out or my taser or my brass knuckles or all three and charge at them. But then I realize I’m 5′2″ and white. . .and....they’d see me as female even though I’m clearly not... They wouldn’t take me seriously and would probably just taser me and cuff me and then either jail time or psych ward. They may not even taser me. They’d probably just throw me on the ground. . .which. . .I’ve had done to me before. I’ve had a cop pick me up with one hand and throw me on the floor in order to cuff me. I know what that’s like... Didn’t hurt at the time coz I had drank a whole bottle of Schol’s vodka and downed exactly 100 xanax. So I felt nothing. But...my friends made me aware I am white and 5′2″ and nonthreatening and even if I begged them to shoot me or did something genuinely threatening to make them have reason to draw their gun or shoot...they probably wouldn’t. . . Which is just... so unfair to everyone involved. All these wonderful, innocent POC being shot all the fucking time, usually to death...for absolutely no reason at all..... and then us saltine crackers not being able to be shot even when we’re begging or doing something threatening. All these people that deserve to live dying.......yet I’m here...still alive... and worth nothing and should be dead....

I’m in ramble-mode now and I’m losing focus because I’m trying not to cry.

Just know...this message......is exactly what I needed right now...

And I cannot even fathom how or why you would feel this way....how or why anyone would...or could... I can’t fathom why you would take the time to write such a wonderful, genuinely kind thing to me... I can’t...I can’t....

Thank you does not even BEGIN to describe the appreciation I want...NEED...to convey. I can’t... I can’t begin to express my appreciation for this... This is literally a life-changing ask. I’m not kidding you. You may very well have just saved my life with this ask.

Thank you. That doesn’t begin to cover it, but...thank you.

[howellrichard]

Lyme Disease: Symptoms, Testing, Treatment & Prevention (Interview)

Hiya Gorgeous,

One of my favorite things about living in the Catskills is taking long walks with my dog, Lola. But just this past weekend, we both came home covered in ticks. Lyme disease was my first concern. So far, we’ve both been lucky and fine, but I still need to be super vigilant about protecting myself and my beloved fur-kid. Lyme is one complex mofo. So today, we’re going to take a deep dive into this tick-borne bacteria and fully uncover all of its intricacies.

Lyme is called the “Great Imitator” for a couple reasons. First, it’s easily mistaken for other serious chronic conditions. Second, it’s been known to be at the root of many neuropsychiatric symptoms, from depression to anxiety to early dementia.

There are also different forms of Lyme. Acute Lyme happens when it’s caught early and treatment occurs within the first month of a tick bite. In these cases, it’s cured almost 75% of the time with antibiotics. But if an infectious tick bite goes unnoticed, it can lead to Chronic Lyme. In addition, Lyme bacteria can enter the nervous system and cause neurological issues. Plus, they typically travel with some co-infection buddies, like Babesia and Bartonella. The result? A wide range of chronic illnesses that are prevalent today.

Could your chronic illness be caused by #LymeDisease? Find out in this revealing Q&A w/ @DrRHorowitz… @Kris_Carr

Since 2013, there’s been a big increase in Lyme cases, with nearly 400,000 individuals a year infected with the disease (study). Blood tests are often unreliable and only detect about 50% of Lyme disease cases. So, there’s probably closer to one million cases happening each year. That’s a whole lot of people dealing with symptoms! So, let’s roll up our sleeves and truly understand this beasty. The more we know, the more we can prevent and treat it.

To help us understand Lyme disease and all its signs, testing options and treatments, I’ve turned to our wonderful friend, Richard Horowitz, M.D., a leading expert on Lyme disease who has treated over 12,000 chronic patients. His book, “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease”, is one of the very best books on the subject.

As you can already tell, Lyme is complicated. So, it’s going to take a bit to unpack this topic for you. If this feels like too much information to take in at one sitting, bookmark this blog and finish reading it a little later. What’s important is that you take your time and make the most of this priceless knowledge. And if you know someone who would benefit from this information, please pass this blog along.

OK, let’s dive in and start with the warning signs…

Kris: What are some of the common and not-so-common symptoms of Lyme disease and co-infections?

Dr. Horowitz: The hallmark of Lyme disease is that the symptoms come and go with good and bad days, and the pain usually migrates around the body, whether it be joint pain, muscle pain and/or nerve pain (usually described as tingling, numbness, burning and stabbing sensations). Migratory pain is very specific for Lyme disease. You don’t see that with Chronic Fatigue Syndrome or Fibromyalgia, which can also both be due to a viral infection.

Other classic symptoms include hormonal fluctuations in women, where there are worsening symptoms around the menstrual cycle, as well as an improvement or worsening of symptoms with antibiotics (called a Jarish-Herxheimer reaction, which is an increase in symptoms as the bacteria are being killed off). Also, resistant fatigue (mild, moderate or severe), a stiff neck, headache, light and sound sensitivity, memory and concentration problems, word finding problems, sleep disorders (problems falling asleep and frequent awakening), chest pain and palpitations, as well as mood swings with an increase in depression and anxiety.

When Lyme affects the part of the body which controls the blood pressure, heart rate, bowels and bladder (called the Autonomic Nervous System), this can lead to symptoms of unexplained nausea, vomiting and chronic constipation, difficulty urinating, as well as dizziness standing associated with anxiety and palpitations (due to a drop in the blood pressure with a compensatory increase in the heart rate). This constellation of symptoms is referred to as POTS (Postural Orthostatic Tachycardia Syndrome)/dysautonomia (a dysfunction of the Autonomic Nervous System) and requires specific therapies to treat these symptoms.

If a patient complains of day sweats, night sweats, flushing, chills, air hunger (shortness of breath) and an unexplained cough, these are classic symptoms of a co-infection with Babesia, which is a malaria-like illness. Co-infection with Bartonella species can cause a new onset of a seizure disorder, unexplained eye symptoms with inflammation (iritis, uveitis, optic neuritis) and severe resistant neurological symptoms, including neuropathy (nerve pain/tingling/numbness) and an encephalopathy (cognitive difficulties). Bartonella patients may also have a distinct rash on various parts of their bodies. This can appear as red or white “stretch marks” over the chest, back, buttocks and lower extremities, which are either horizontal or perpendicular to the skin planes.

Kris: Does an individual have to be bitten by a tick and present with a bull’s-eye rash to contract Lyme disease and co-infections? And, are there other routes of transmission?

Dr. Horowitz: The major route of transmission of Lyme disease is through a tick bite, but only half of the infected individuals get a rash, and less than half of those present with a classic bull’s-eye rash. Many rashes look like solid red, spreading rashes, which can be confused with a cellulitis (infection in the skin) or a spider bite. Other borrelia species (like the newly discovered Borrelia mayonii) can cause diffuse and spotty rashes, so the type of rash depends on the borrelia species.

Another route of transmission of tick-borne diseases includes maternal-fetal transmission of the Lyme bacteria from a mother to child. This has been reported in medical literature and can lead to severe complications in the fetus. This is also true for co-infections, like Babesia and Bartonella, which can be transmitted from a mother to a child in the womb but can also be transmitted through an infected blood transfusion. Lyme can survive in a blood bank but has not yet been proven to be able to be transmitted by transfusion, although other borrelia species, like relapsing fever borrelia, can theoretically be transmitted with infected blood.

Another potential route of transmission includes sexual transmission of Lyme disease, but it has not yet been definitively proven. And finally, other routes of transmission of tick-borne diseases, like Bartonella, include bites from fleas, mites, lice, biting flies and spiders.

Kris: Are the standard Western blot and ELISA tests accurate? If not, how should an individual who suspects he/she may have Lyme disease and co-infections go about finding the proper diagnosis?

Dr. Horowitz: The standard two-tiered testing of an ELISA followed by a Western blot, which is used by the CDC, is known to be inaccurate. It will miss approximately half the clinical cases of Lyme disease. The diagnosis of Lyme disease is ultimately a clinical one. Even the CDC says this. The issue, of course, is how do you make the clinical diagnosis. The key point in making a diagnosis is to take a proper history and rule out other diseases that cause overlapping symptoms.

I have a questionnaire in my new book, “How Can I Get Better?”, that we validated with the help of SUNY New Paltz researchers, and we discovered that a score greater than 63 on the questionnaire statistically gave you a high probability of having Lyme disease. The key was to determine if the classical symptoms we discussed were present. When you use that score with an expanded testing panel for tick-borne disorders, you can usually make the diagnosis. I have a section in my new book that explains in detail how to do a differential diagnosis and use these tests if you have gone from doctor to doctor looking for answers and still find yourself chronically ill.

Download this Lyme Disease Cheat Sheet for guidance in identifying and conquering Lyme:

Kris: What does the typical treatment protocol for Chronic Lyme disease entail? And, is it curable?

Dr. Horowitz: The Lyme bacteria has different forms and locations in the body, so the most effective treatments are to combine antibiotics and natural therapies to address each of the different forms and locations.

However, everyone’s response to therapies is different. Patients with chronic symptoms after classical treatment for Lyme disease often have multifactorial causes for their illness. I call this syndrome Lyme-MSIDS (Lyme-Multiple Systemic Infectious Disease Syndrome) and it represents sixteen potential overlapping medical problems contributing to persistent symptoms in the Lyme patient.

The first point on the MSIDS map is infections. Ticks contain multiple bacterial, viral and parasitic infections which can be transmitted simultaneously with Borrelia burgdorferi, the agent of Lyme disease, and those who are infected with Lyme disease and associated co-infections are much sicker and resistant to standard therapies.

Patients with Lyme-MSIDS also have evidence of associated immune dysfunction, inflammation, environmental toxins with a multitude of other symptoms, which are detailed in my book. These factors can keep the patient chronically ill. The key is to find all the overlapping causes of inflammation in the body that are contributing to chronic illness. The term “Chronic Lyme disease” needs to be redefined as Lyme-MSIDS to more accurately reflect the multiple underlying etiologies responsible for persistent symptoms.

Kris: Do you believe that every patient requires long-term antibiotic therapy or can some cases be treated with strictly holistic and herbal approaches?

Dr. Horowitz: Some cases can be treated with short-term antibiotics while simultaneously using an integrative approach to finding the overlapping causes of inflammation. This is where using herbal treatments with the 16-point MSIDS model as a roadmap to health can be very helpful. The people who come to me have usually been to 10-20 doctors and have been sick for many years before I see them—and usually require a longer-term antibiotic protocol while using the MSIDS approach.

Kris: What preventive measures can we take to protect ourselves from this growing epidemic?

Dr. Horowitz: It is best to wear protective clothing treated with permethrin, which kills ticks, while placing tick and mosquito repellants on exposed skin. These include products like Avon SSS IR3535 and picardin, which are safer than DEET (which can be used in a 20% solution, if going into very high-risk areas). For a totally natural alternative, try Outdoor Lyme Armor formulated by Lyme herbalist, Stephen Harrod Buhner (whose in-depth book on Lyme is listed in the downloadable). Wearing light colored clothing with the pant legs tucked into the shoes is also helpful while doing regular tick checks. Proper removal of the tick by getting underneath it with a tweezer and not squeezing it is important to prevent transmission of infection. You can save the tick and put it in a baggie or vial with alcohol and have your health care provider or health department send it out for testing to determine which organisms are in the tick. If the tick was attached for more than several hours and difficult to remove, or especially if it is engorged with blood, it is best to speak to your doctor about a course of prophylactic antibiotics. Once you come indoors, you can also place your clothing in a dryer at high heat for 15 minutes, which will kill ticks.

The key is to remember that Lyme and associated tick-borne diseases have spread worldwide, and you can catch an infection in your backyard, not just going into the woods. Education about the signs and symptoms of Lyme and associated tick-borne disorders with proper prevention are the most important steps we can take to keep ourselves and our families healthy.

Well, that’s Lyme in a (large) nutshell. Thanks, Dr. Horowitz! I’m so thrilled to be able to share your knowledge and experiences with KrisCarr.com readers. If you have any questions, helpful resources, interesting tips or want to discuss your experiences, please drop them in the comments below—it’s a space where we can all learn from and share with each other.

Peace & perseverance,

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