#and she said i needed a doctors note but i didn’t have a pcp or anything in my college town and there was a waitlist at the campus clinic

[steviescrystals]

the last post i reblogged just reignited my rage over something that happened my freshman year of college so mini rant in the notes lol

[mymedlife]

Scene: The emergency department.

Patient presents with concern for seizure activity. Something we see frequently in the ED. Seizures are scary, families are often worried. However, sometimes what looks like a seizure isn’t really a seizure.

Some minor details are changed or kept intentionally vague to protect patient privacy.

After a thorough history and physical, I explain to a family that I’m not convinced that this 5 seconds of patient stiffening his whole body in the middle of a tantrum is a seizure. While scary, I am reassured that the event was brief, he has been at his baseline since, and a neurological examination is normal. The good news is, if this was indeed a seizure, I am still reassured at how well he looks now. Everyone gets one free seizure as long as it’s brief and they are back at their baseline before we rush to start medications. I’m going to recommend a neurology follow up for an EEG, and strict return precautions.

Standard speech, I give it at least once a week. Usually people are happy with this explanation and plans to see a subspecialist in the future.

This family stares at me and doesn’t say anything. So I ask if they have any questions or concerns, or if there is anything else I can do for them? They stay nothing.

I tell them that I just said a lot, they may have some questions, and I’ll give them a few minutes and check back in.

I tell the nurse that I’m not sure how well that conversation went and I suspect they will have some questions or concerns and to come grab me if they voice anything before I can make it back to the room.

I go see another patient and sit down to chart for a few minutes before going back in (in particular their seizure and something related to a patient in the next room were about the same time so wanted to make sure I didn’t mix the two up).

In the process see a phone note in the middle of the nursing notes from the current patient encounter. It’s a note from the nurse triage line at the primary care office saying that the family called, felt like the ED was dismissing their concerns, and requesting a second opinion.

Note that no one from the office called me about this, I just happened to see it.

So I go back in, apologize to the family but I get the impression they may not be satisfied with their care today.

Mother then gets snippy, tells me that she knows what a seizure is and that she knows that her child had a seizure.

I again explain that usually for brief seizures with a normal neuro examination we have them follow up with neurology, but given her concerns I’m happy to get some screening blood work they usually get at the first neuro appointment and talk to the neuro team.

I speak with the neuro team, they agree that this could be done as an outpatient, but as it so happens we can do an EEG in the ED.

Great. EEG is done. I go back into the room to talk to the family about the results when mom’s phone rings. She says she needs to take it, puts one finger in her ear and turns her attention to the call. Suddenly the results of this emergent EEG aren’t so important.

The all important call, the on call nurse from the primary care physician returning their original call for a second opinion. BTW she agreed with the original plan to see neuro as an outpatient.

When I finally get a chance to tell them about the results (normal) and neuro’s recommendations (follow up outpatient), grandmother (who has just shown up) says how proud she is of mom for calling the PCP and fighting so her son can get the care he needs.

Look, I know some doctors suck. And it’s hard to build a relationship with an ER doc. But I can’t address any questions or concerns you have about diagnosis and plans if you don’t ask. And for the record, that PCP never reached out to me, and I picked up on that because I’m a caring physician. And I’m writing this because I suspect that this family left the ED thinking I’m dismissive and lack empathy, will likely fill out an evaluation form saying such, and I need to shout out into the void that I really do care and I’m really sorry that people feel like I don’t.

Fin.

[awheckery]

so. uh.

cut for frank discussion of chronic illness and the serious failures of the american healthcare system. tw for fatphobia and gaslighting.

Last July, I got sick. It wasn’t too bad at first: some fatigue, body aches and a slightly elevated temp, until suddenly it was bad and I wound up in the ER. It took three rounds of steroids, a round of antibiotics and a more powerful inhaler to get my feet back under me, but I never fully recovered.

I didn’t talk about it here, except for answering an ask in October and blaming my lack of creative output on depression. It really, really wasn’t depression; it was my health progressively collapsing, one system after another until the avalanche of symptoms that flattened me just after New Year’s.

For the last four months, I’ve spiked a fever over 100°F nearly every single day. My joints hurt. My knuckles are knobbly and swollen, and occasionally my fingers are so painful and weak I’ve had to literally tape my pen to my hand at work. I get rashes at random that itch so badly I claw myself bloody. I overheat and have hot flashes in temperate rooms. The skin on my face and neck and shoulders turns red and hot to the touch, like I’m burning for hours with no immediately discernible provocation.

Some days, I wake up and I don’t have the strength to get out of bed. Some days I can’t wake up at all. I’ve slept through deafening alarms for hours, long enough for my phone battery to run out and die. I can only stand up for ten minutes a day without being hobbled by the effort, and every extra minute beyond that I pay for in hours spent bedbound by exhaustion and pain.

I keep losing words. I’ll arrive at the middle of a sentence and stumble to a halt, because the word I need isn’t there. It’s not true aphasia, and it’s not all the time. I comprehend written and verbal communication perfectly well, but I can’t get my own thoughts out without tripping over them.

I am, to quote a friend attending school to be a nurse practitioner, “a textbook case for SLE,” and I agree, but somehow I can’t pay a doctor to treat me seriously.

In January, I was referred to a rheumatologist after the bloodwork my PCP ordered indicated I had autoimmune activity of some kind.

To date, that’s my only test for anything that’s come out definitively positive for any kind of disease state at all. Ever. I tested negative for celiac disease on a technicality nine years ago, despite how specifically and intensely sick gluten makes me, so I was dismayed but not too surprised when follow-up bloodwork for lupus came back just barely inside the range of “normal.” Despite that, I wasn’t prepared to be jerked around as much as I have been.

The first rheumatologist I saw, back at the end of January, had barely been in the exam room for thirty seconds when I could see he’d already made up his mind about me. He was dismissive and perfunctory and condescending when he told me that “plenty of perfectly healthy people have positive ANA results,” and he referred me back to my PCP for an exercise program and antidepressants to treat my “fibromyalgia.”

Putting aside that I’m not a “perfectly healthy person,” I’m a Fat Lady living in America, and I’ve experienced medical fatphobia for decades at this point. You learn the key words and phrases pretty quickly, and “exercise program” has never not been a euphemism for “weight loss.” (Which is heavily ironic in this particular situation, because before I was Fat, I walked 2-3 miles a day for funsies and spent 15-20 hours in the gym every week. I only stopped because I somehow shredded both my ACLs in one summer. I’d love to get back to that if a rheumatologist could help me figure out how to be active and uninjured at the same time.)

I was frustrated after that first appointment, enough to request a referral to one of the best teaching hospitals in the country. Why not go to the best, right? There was a five month wait for an appointment, but I am stubborn, and I made use of the time by documenting every bullshit symptom my body threw at me. I have a daily symptom journal, full of subjective entries like my pain and fatigue levels, as well as objective entries like daily temperature changes and photos of my rashes and my burning face and my goddamn mouth ulcers.

I thought I had enough logged to be impossible to ignore, and then I saw the second rheumatologist three weeks ago, and the first sentence out of her mouth was the beginning of an interrogation on my blood pressure, and whether I was taking medication or if I was on a fucking exercise program for it. I tried to get the appointment back on track by sharing my symptom diary, and she turned back to my just-under-the-wire test results, and told me, “many healthy people have positive ANA results, it doesn’t mean anything without other positive test results for specific conditions.”

I said, “Healthy people don’t run a fever for months.”

And then she told me that a "fever is not associated with any of the conditions a rheumatologist treats." I was so startled by the confidence and authority with which she stated the lie that I was unable to speak to rouse a defense or contribute anything else for the rest of the appointment. After an insultingly brief examination, in which I never took my face mask off and she declined to look at any of my photos, she said that she “didn’t see anything that could be rheumatologically wrong with me.”

I asked her what she thought could be wrong with me, and she grudgingly admitted it’s possible, though rare to have an autoimmune disease and test negative for everything, so she would order more tests and refer me to appropriate specialists for my various symptoms. She ordered a referral to an infectious disease specialist for my fevers, and a referral to a dermatologist for my “rosacea” (that she’s assuming I have, because I would like to again note she did not see it, at no point did she actually look at my face or a photo of it), and a referral to an ENT for a salivary gland biopsy for my dry mouth, and a referral to a neurologist for my “stroke-like” memory and speech problems.

It was, all told, an unbearably shitty appointment. I cried in my car for an hour in the hospital parking garage so I wouldn’t do anything impulsive like lying down in traffic, and then I went home, cried some more, and went to bed for three days.

On the fourth day, I woke up enraged. It’s one thing to be blown off by a doctor when you’re just reporting symptoms without proof, it’s a wholly different thing for a doctor to ignore your proof and lie about diagnostic criteria to your face.

It’s hard enough not to think you’re crazy when your test results come back negative over and over; it’s that much harder after being told that your major concrete measurable symptom is diagnostically irrelevant, when it really, really isn’t.

(for the record, just going off the symptoms I can concretely prove I’ve experienced in the last week alone, I land a 16 on this chart, which is the most up-to-date, widely agreed-upon diagnostic criteria)

I have decided, for the moment, to play ball. I don’t have the energy to jump through all the hoops this rheumatologist wants, but I'm angry enough to drag myself through them. Tomorrow I’m supposed to see the infectious diseases specialist. On Wednesday I see the dermatologist. In two weeks I see the ENT, and I’ve got a neurology appointment tentatively scheduled for December.

I’m going to be blisteringly forthright with all of these doctors about why I’m there, and that I’m looking to exclude diagnoses other than the lupus I pretty obviously have. (Except with the ENT. Apparently they treat allergies, and I’d like to be able to go outside long enough to walk a dog, someday.)

I’m supposed to see this rheumatologist again at the end of November. Depending on how this week’s appointments go, I’m aiming to either move up my appointment with her when one becomes available, or just send a firm yet diplomatic email asking why the diagnostic criteria apply to everyone but me.

If anybody else has gotten through this fucking nightmare successfully, I’m open to suggestions, it’s not like it can get worse at this point.

[hellyeahtrickster]

It occurs to me that I have friends here that I don't have contact with in other spheres, so ... life update: my mother passed away unexpectedly last Friday. I'm doing as well as one would expect. Been going through her things as both a walk down memory lane and a goodbye. I keep coming across things she never got around to using, and it hits hard that now, she'll never have the chance. And I can't stop thinking of the stories we watched together that now she won't know the ending to, or shows I wanted to try with her. And then there's all the things we used to do together on the regular -- all the places I can never go with her to again. And all the places we wanted to go to "someday", but now she never will.

We were two weeks out from our second COVID shots, and 4 weeks from being totally vaccinated. We were finally going to get back to EPCOT, to see the Flower and Garden show. Finally going to get back to the Florida Mall. Going out to lunch. That I won't be doing this things with her anymore ... it's unfathomable. I can't wrap my head around it.

Thanks, anti-mask / anti-vaccine Covidiots, for prolonging the presence of this pandemic -- basically stealing the last year of my mother's life. She was anxious to see her elderly mother again, because we don't know how long *she* has left ... and now she never go to see her mother again. I knew losing my mom would happen someday, but my mother was relatively young yet, so I thought it would be a while ....

It doesn't help that she died after the second night on a new bed. See, she slept on her side all the time, what with the couch being narrow, but with a twin mattress, the bed was much wider. She snored a lot -- I highly suspect she had sleep apnea. When I found her the next morning, she was on her BACK. The doctor agreed that her cardiac arrest could have been caused by sleep apnea. In trying to make my mom more comfortable .... Yeah, I know, it's not my fault, but I cannot shake that thought away, that she's not here anymore because we tried to do something nice for her. How cruel the humour of the universe can be.

(I'd put the rest of this behind a cut, but I don't see that option anymore? Sorry!!)

And it REALLY doesn't help that, not only have I lost the person I was closest to, but now I am stuck alone with the person I least want to be with: my dad. I'm pretty liberal, and he's pretty conservative. We fight a LOT. We haven't really since mom died (things got a little tense here and there, but not like we usually are) ... but I know it won't last. It can't -- not when he believes BLM are terrorists, or that gays have an agenda. And now he keeps wanting to do things with me, like watch my shows, and a petulant part of me is like, no, this is mom's territory -- stay out. I don't want to do anything with him. (Especially since I know he'll start ranting once the shows start talking about racism and homophobia.)

My parents always had a volatile relationship. Mom didn't know you could get pregnant the first time, and when she found out she was pregnant, her Catholic family bullied her into marrying him.* And he cheated on her at LEAST once (with a girl who was only a few years older than me at the time -- I was 15, she was 19, he was 33). My mother was far from perfect, so I don't blame all the marital problems on him. But my point is they were married "in name only" for about the last 25 years, so it's ... offensive to me now that he would dare to act bereaved.

I know he can be hella manipulative, make himself seem generous so as to be loved, and then turn on you like a viper, getting irrationally angry. I can't drive, we live in a very rural area with no public trans, there are no friends or fam less than an hour away, I've had next to no job for the last 17 years, I barely feel like a functional human being (am coming to seriously suspect I have ADHD and Dyscalculia; I have diabetes and suspect have PCOS and a thyroid problem; all these things having strong interconnections; and I have no insurance, nor do I qualify for aid, thanks to living in Florida), and I feel utterly trapped. There's a reason Rapunzel is my fave princess. I've had bad experiences with cabs, so using Uber / Lyft kind of terrifies me. Plus, he'd want to know where I'm going, and likely either insist on coming too, or insist I can't go, because his house, his money, his rules. The ONLY time each year I get away is when I go to Dragon Con (and I'm worried he might forbid that in the future -- he has once before).

And then there's the problem of ... he has no one. As much as I can't stand him, he lost his job because of COVID, he's lost his wife, he has no real friends (total homebody), and like it or not, he has supported me financially for so long. Even if someone else were to take me in, or I can get a job and save to leave ... how can I leave him (a person with severe rheumatoid arthritis / in not-great health)? I owe him too damn much, and I feel like it would be entirely callous of me. Yes, I realise that that's the abuse talking, but ... it's also true?

Anyway, I feel like I'm on Sliders, and keep stepping into progressively worse timelines.

* Let me mention that I have long suspected my mother is -- was -- on the autism spectrum, but when I mentioned it to one of her sisters, the sister seemed skeptical, saying that if anything, mom had a penchant for reading out loud, so they thought maybe she had a reading disability, and took her to a specialist, but "that's it". (Mom was in "remedial" classes through high school, so it doesn't sound like they did enough -- and maybe couldn't because the science just wasn't there.) I explained that mom frequently seemed to have trouble grasping concepts, especially humour. Like when a radio ad featured someone reciting a love-letter to a tomato, she was all, "That's stupid -- tomatoes can't read!" Try as I might, I could not get her to understand that the love letter was a playful way to tell US about what makes the tomato so good.)

Anyway, when I talked to my grandmother recently, she said that my mom "always had a special way of looking at things," and that she guessed mom was "what do they call it -- neuro-something? 'Aspie'? High-functioning, but still." And I told my cousin about it, and he said, "Wait, I thought it was common knowledge in our family that your mom was autistic?" (Note: we have other, officially diagnosed family members who are on different areas of the spectrum.) People always commented when I was growing up that it was like my mom's role and mine was reversed -- like I was the parent, and she was the child.

But to think my family had *recognised* that something was up, and left me, a child, to deal with it on my own?? To think they *pressured* someone who was "special" into having a child?

I know my mom loved me, but my whole life, she said she wished I'd never been born, and so she'd never have married my dad -- I know both can be true, that she loved me but wished she'd never had me (she'd have never known what she was missing). She only survived her marriage because I was there; I've always felt she'd have had a better life if she hadn't married him. When she tried to leave him, her mother would not take her in, because divorce was against her mother's Catholic beliefs (never mind that my uncle divorced twice)

I loved my mother, but were fought a lot, and she frequently exasperated me as we struggled to communicate. She frequently left words out, but did not believe that she did; when we met her last PCP the first time, he looked at me and said, "Is she always like this, or is she having a stroke?" And she would always angrily proclaim that I wasn't listening, when most of the time, it's that I couldn't get her to understand that she was working from a misconception or misunderstanding in the first place, because she would focus on ONE THING, to the exclusion of all else.

An example of an exchange (copied from a letter I wrote to a friend): We got into a weird argument yesterday. She had asked me for pain reliever, a glass of tap water (you're supposed to drink a full glass of water with the pills), and a "cold water" from the fridge (it's too cold to drink it all at once, but we both prefer ice water in general). Later, I was picking stuff up from her table-tray, including a bottle of pain reliever, and put a bunch of stuff away. When I passed by again, she asked for more cold water. I happened to look as see that she had the tap water glass still full, even though she had asked tor it half an hour before. I asked if I needed to bring the pain pill bottle back, because she hadn't drunk the tap water yet -- had I taken the pill bottle too soon, or had she forgotten to drink the water? She was all, "no, I said I need COLD water!" I said I knew that, and I would bring it; I was just asking of she had taken her pills already, or if I needed to bring the pill bottle back too. Her (again): "I said I need COLD WATER!" Me: "I know, and I will bring that -- I just want to know why you haven't drunk the tap water yet? Did you take your pills?" Her: "No, I'll take them at bed!" Me: "So I should bring back the pill bottle? Did I put it away too early?" Her: "YOU DON'T LISTEN! I SAID I NEED COLD WATER!" Me: "And I said I will bring that -- I'm just asking if you also need your pain pills?" Her: "You already took the bottle!! Did you forget that already?"

And then I finally spotted the white pain pills on the napkin under the tap-water glass, so I knew that no, I didn't need to bring it. But it's a frequent struggle to figure out how to phrase questions so I get the answer I need -- nearly every time, I get her screaming at me that I don't listen.

She loved me, but she was never mothering. She hated to be touched, so never hugged me; I was pretty touch-starved. I learned to read because she was a very slow reader when reading me stories; I got impatient and learned to do it for myself. She couldn't help me with my homework. She resented having to take me to school recitals and science fairs. She wasn't someone I could get advice from. I admit I was often envious of characters who had physically-loving, compassionate, wise mother-figures (who weren't so binary about morality -- and so weren't always screaming that this or that character should die, no matter how small the transgression).

But I wish she were still here to frustrate me -- that's so much better than not having her at all. And I wish I had been better at keeping my temper.

She was an atheist, and firm in that belief. Maybe she's right, or maybe her firm belief is affecting me, because I would dream frequently about others I have loved and lost, and swear I feel them, but with her ... nothing. Just a gaping hole in the fabric of my waking life, threatening to suck all the light and hope into it.

[queen-of-deans-booty]

I Believe the Children Are Our Future: Part One

Pairing: Dean x Reader

Word Count: 2,186

Warnings: typical supernatural violence, language, angst, blood, you know the usual

Author’s Note: I do not own anything from Supernatural. All credit goes to their respective owners. Any and all comments on these are appreciated. I really want to hear what you guys think about this one!

Feedback is the glue that holds my writing together.

Tags at the bottom

“Agents Page, Plant, and Ronan,” Dean said as he held up his fake badge for the doctor to see.

There had been reports of strange deaths occurring in this town, but you didn’t really know how strange. The police report you found said something about a girl with a head injury from something that clawed through her skull. Normally it wasn’t your type of thing, but when you talked with the police that made the report, he was very nervous and he stuttered which made you think there was something supernatural about this.

“Gentlemen, Lady. What brings you by?” the doctor asked.

“We need to see Amber Freer's body,” you stated.

“Really? What for?”

“The police report said something clawed through her skull?”

“You didn't read the autopsy report that I emailed out this morning?”

“W-we had, uh, server issues,” Sam chuckled nervously.

The doctor motioned for you three to follow, and he led you to the room where the bodies were kept in freezers. He opened one and pulled the body out before removing the sheet from her head.

“When they brought her in, we thought she was attacked by a wolf or something,” the doctor explained as he showed you the claw marks on the side of her skull, “but we were wrong.” He picked up a plastic bad from the slab the body was laying on before showing it to you and the brothers.

“Is that a—”

“Pressed-on nail,” the doctor finished for you. “We found it in her temporal lobe.”

“You’re saying she did this to herself?” you asked, clearly shocked.

“Uh-huh. She scratched her brains out. It'd take hours, and it'd hurt like hell, but sure—it's possible.”

“How?”

“Pick your acronym—OCD, PCP. It all spells crazy,” the doctor sighed. Sam reached for the blanket and pulled it back further until the girl’s hands were shown. Amber’s right hand had four press-on nails still attached, but the middle finger has nothing on it. “My guess, some kind of phantom itch. I mean, an extreme case, but still.”

“Phantom itch?” Dean asked.

“Yup,” the doctor stated as he placed the sheet back over her body and put her back in the freezer. “All it takes is someone talking about an itch—or thinking about one, even—and suddenly you can't stop scratching.”

“Thanks, doc,” you smiled before leaving the morgue with the brothers.

Now you know why the police was nervous when you talked to them because they were curious about why she did this to herself or what caused it to happen.

“The family should still be a little fresh regarding information. We’re heading there next,” you said as you clutched the keys in your hand.

“When I agreed you could drive, I didn’t mean take over the whole goddamn investigation,” Dean joked as everyone got into the car.

“Get used to it,” you smirked before pulling out onto the street to head to the house where Amber died—the house in which she was babysitting.

While Sam was questioning the parents of Jimmy, the little boy who had Amber as a babysitter, you and Dean looked at the rest of the house for anything suspicious. The little boy, Jimmy, was watching from the kitchen because he seemed too scared to even go into the room with the FBI Agents who he thinks are real. As soon as you saw him, you nudged Dean before approaching the young boy.

“Whatcha lookin' for?” Jimmy asked hesitantly.

“Don’t know yet,” Dean answered.

“It’s Jimmy, yeah?” you asked and he nodded. “So, Amber was your babysitter?”

“Yes, ma’am,” he gulped.

“Did you, uh, you see anything strange that night?” Dean asked.

“No, sir.”

“You sure about that?”

“I—I would tell you if I knew something. I promise. One hundred percent. Cross my heart.”

“Well, Jimmy, I happen to know you're lying,” Dean began, but the young boy tried to get out of it.

“I'm not.”

“Jimmy,” you stated as you kneeled down which was more closer to his height than if you were to stand. “You’re not going to get in trouble. I promise you. What happened last night? You can tell us.”

“I didn’t mean to. I didn’t think it would work. I put it on her hairbrush,” he started crying as he pulled out what he used to prank his babysitter with.

Taking the object from his hand, you looked at the itching powder that claimed to work like a charm. Looking at Dean, you patted Jimmy’ shoulder as you stood up.

“Thank you for letting us know, Jimmy,” you said as you walked back over to Sam who was finishing up. He thanked the parents for their cooperation just as you three left the house.

“What did you find out?” Sam asked.

“Kid said he put this on the babysitter's hairbrush,” you explained as you held up the powder.

“Y/N, there’s no way itching powder made that girl scratch her brains out. It's just ground-up maple seeds.”

“If you have any other theories, I'm open to 'em,” you shrugged.

Sam’s phone rang as you approached the driver’s side door. He looked distressed as he talked to whoever was on the other line.

“Yeah?... Yeah, we'll be right there,” he sighed as he hung up.

“Who was that?”

“The police. There’s been another death.”

“Hospital it is then,” you chuckled as you got into the car and started her up.

The drive to the hospital wasn’t far, and when you got there, they were already putting a body in a body bag and zipping it shut.

“What happened?” Sam asked when he showed his badge.

“Guy got electrocuted,” the doctor answered.

“Any idea how?”

“Eh, maybe a loose wire or a piece of equipment shorted out. So far, we haven't found anything.”

“Witnesses?”

“Yeah, guy in there—Mr. Stanley,” he pointed out the old man who sat in a chair, looking out the window. “He says he saw it, but he's not making a lick of sense. Senile.”

“Thank you,” you nodded before going over to the man. “Mr. Stanley?”

“It was just a joke. I didn't know it would really work.”

“What would work?”

“All I did was shake his hand,” he sighed shakily as he held out his hand, and in the palm is a joy buzzer—the kid of toy that kids mean to shock others unexpectedly.

“Could I see that, please?” you asked as the old man handed it over. Careful not to touch the metal part, you looked at the brothers before leaving the room with them.

“What are you going to do with it?” Dean asked.

“Test it.”

Sam and Dean had industrial goggles on their eyes with black rubber gloves that welders use in case they get sparks on their skin. In the middle of the room was a large uncooked ham in two stacked aluminum-foil pans sitting on the table. Instead of wearing the same kind of goggles and gloves at they were, your magic was to protect you. Blue magic formed over your eyes to shield you from whatever is about to happen as well as over your hands and arms.

“You two ready?” you asked as you looked back at them.

“Hit it, Mr. Wizard,” Sam chuckled.

Rolling your eyes lightly, you turned back to the ham before placing the shocking ring on your finger. Taking a deep breath, you placed it to the ham which began to cook from the inside out. Shocked, pun intended, you pulled your hand away to reveal the burned ham.

“That’ll do pig,” Dean commented as he inched closer.

“What the hell?” Sam gasped. “That shit isn't supposed to work.”

“This thing doesn't even have batteries,” you said as you carefully placed the buzzer down before your magic went away. Both brothers took off their gloves and glasses before Dean took out his knife and began cutting the meat.

“So, what? Are we looking at cursed objects?”

“Sounds about right,” Dean said as he ate the meat. “Maybe there's a powerful witch in town. Is there any link between the, uh, the joy buzzer and the itching powder?”

“Uh, one was made in China, the other Mexico, but they were both bought from the same store.”

“Hmm,” Dean muttered as he continued to eat.

“Come on, Dean,” you sighed as you grabbed his arm and lead him out of the door.

The only place in town that would sell this kind of things was a magic shop which didn’t take too long to get to. As soon as you approached the shop, you walked inside which sounded the bell above the door.

“Sam! Y/N!” Dean grinned as he held up a whoopee cushion. Rolling your eyes, you walked to the counter just as the owner came out of the back room.

“Welcome to the Conjurarium, sanctum of magic and mystery.”

“Are you the owner?” you asked.

“Yep.”

“You sold any itching powder or joy buzzers lately?”

“Yeah, a grand total of one of each. They aren't exactly big-ticket items. Look, you folks here to buy something or what?” he asked. Dean held up some cash before placing it and the whoopee cushion on the counter.

“So, you get many customers?” you asked.

“Kids come in. They don't buy much, but they're more than happy to break stuff. These days, all they care about are their iPhones and those kissing-vampire movies. The whole thing makes me just—”

“Angry?”

“Yeah. Yeah, I am angry. This shop has been my life for twenty years, and now it's wasting away to nothing.”

“Which is why you hate them.”

“I suppose.”

“You wish there was something you could do about it.”

“Yeah, I guess I do.”

“So, you're taking revenge,” Dean said as he snatched a rubber chicken off the display and slaps it down on the counter before holding up the buzzer, “with this.” He pressed the buzzer to the chicken which melted it immediately from the shock. The owner jumped back and yelped, taking a seat on whatever he could find.

“Oh! No!” he stuttered, making inarticulate noises.

“Yeah, something tells me this guy is not a powerful witch,” you muttered with an apologetic smile at the man.

“Sorry. Sorry,” Dean apologize as you three scrambled to get out before you caused any more danger.

“I thought that was a rumor,” you said as you walked down the stairs from the second floor of the hospital.

There had been kids that drank and ate pop rocks and coke which caused them to have stomach ulcers. There was also a man whose face was stuck in a certain… position… and they needed a plastic surgeon to come to see if they could fix it. All of these things were rumors and tales, so why were they coming true?

“Yeah well, when you’re a kid, you’ll believe anything,” Dean chuckled just as Sam walked out of the room belonging to a man whose teeth are all missing.

“What's up with Toothless? Cavity creeps get ahold of him?” Dean asked his brother.

“Yeah. Close. He wrote up a description,” he cleared his throat as he read from his notebook. “Five foot ten, three hundred fifty pounds, wings, and a pink tutu. Said it was the tooth fairy.”

“So, he's obviously whacked out on painkillers.”

“Maybe. Whatever it was got past locked doors and windows without triggering the alarm. Plus, it left thirty-two quarters underneath his pillow. One for each tooth.”

“Well, I will see your crazy and raise you some. There's a couple of kids upstairs with stomach ulcers—say they got it from mixing Pop Rocks and Coke. Another guy... his face... froze that way,” you indulged.

“What way?” Sam asked.

Dean looked all around him to see if anyone was watching before he pulled the sides of his mouth so that his teeth showed and crossed his eyes. He holds it for a minute before letting go.

“He held it too long and it stuck. They're flying in a plastic surgeon,” you sighed.

“So, I mean, if you add all that up,” Sam hesitated before sighing. “I got nothing.”

“I thought that if you swallowed chewing gum, it would stick in your stomach for seven years before you’re able to pass it through.”

“What?” Dean asked.

“I also thought that saying, “step on a crack and you break your mother’s back” was true. I mean, I was seven, but I believed it.”

“What’s your point?”

“I mean that’s the connection we’re missing. The tooth fairy, the Pop Rocks and Coke, the joy buzzer that shocks you—they're all lies that kids believe and now they’re coming true.”

“Okay, so whatever's doing this is—is reshaping reality. It has the powers of a god. Or of a trickster,” Sam rolled his eyes.

“Yeah, with the sense of humor of a nine-year-old.”

“Or you,” Sam smirked at his brother before leaving your side.

Dean frowned, but you giggled as you passed him since you knew he was right. Dean’s frown deepened, but he followed nonetheless.

Wanna get tagged? Add yourself to this document! If your tag doesn’t work, find out why!

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[tcfkag]

Spoonie Life: My Last Week (fun with complications)

So, I’m having a really rough week. It feels like literally the second I get a break from one thing or a handle on another, then another thing pops up. I never get a break and it is exhausting. And sometimes it just makes you feel so alone because even those that support you - and I have a hugely supportive community of people in my life - just can’t understand. I’ve been feeling increasingly depressed and anxious and alone and my therapist does not have any availability to see me...possibly for months. So I wanted to just write up everything I’m going through because sometimes that helps but also because hopefully some of you may have gone through some similar things (esp. blood clots and ovarian cysts) and could give advice and/or just support. 

Here’s a (not so) short summary of shit that’s been going on lately (in list form because why not). Don’t feel like you have to read it all. I know everyone has their own things going on. But I just needed somewhere to vent and while I shared some of this on FB, I also feel freer to be honest and just fully disclose how hard this is for me here. Sometimes that’s one good thing about this hell site - less reason to self-censor and try to sound positive/hopeful/happy when I really truly am not.

Last Monday (the 15th), I finally finished three months of IV antibiotics I was on for an intra-abdominal abscess (an infected collection of fluid that was right underneath my diaphragm which meant that, for a while, it hurt to even take a breath). 

Good news right? Stopped it about a week ago which is awesome because the antibiotics were infused two hours x three times a day (i.e. six f*cking hours a day that I was connected to an IV bag).

But, I knew I would need a follow-up CT scan that was scheduled for this past Wednesday....and who knew what that would show.

Towards the end of last week, I started feeling very tired all the time. And then my physical stamina just suddenly....decompensated abruptly. I would get tired doing anything. Monotasker and I went to the grocery store and halfway through, I had to sit down (or risk passing out). After a few minutes, I told him “we need to get out of here” so we rushed through the rest of the basics we needed. And then while he checked out, I sat on a bench near-by. My heart was racing, I was out of breath, I was dizzy and light-headed, and just generally felt like I had run a 5K. 

The first couple times this happened I thought “well, maybe I’m out of shape, I *haven’t* been working out at ALL lately. But then I remembered, it was what - a week ago that I attended NYCC where sure, I got tired sometimes and had to sit down once in a while, but it was nothing like this. And I knew that fitness doesn’t decompensate like that....it’s sad that when confronted with such a serious health issue that my first reaction was to just....blame myself. Right away.

So last Sunday (a little over a week ago), I went into the ER to get checked out. I hoped it was something SIMPLE, like dehydration or maybe my anemia had gotten worse or low levels of some kind of electrolyte imbalance. Anything that could be handled in a single evening. Three guesses about whether that was really the problem (though if you’ve followed me for more than a hot minute, I’m sure you know that the right answer is...because of course, NOTHING is ever simple).

At the ER, they decided to do the CT scan I was supposed to have that Wednesday just to make sure there wasn’t anything they were missing. And while the abscess they had been treating was largely unchanged (so they are going to stop the antibiotics), they also found that I had a blood clot in my pelvis. This is my third blood clot but the other two (a DVT in 2008 and a PE in 2015) were both post-surgical. This is my first blood clot that happened “spontaneously”. The admitted me to the hospital for about 48 hours and put me on a heparin drip until they could get a blood thinner arranged to release me and send me home. 

A few observations and factoids about blood clots and their treatment for those who are interested.

People with Crohn’s Disease and Ulcerative Colitis (i.e. IBD) are more prone to blood clots. If you have IBD (or any autoimmune disease actually), you should be aware of this risk and know the signs of blood clots (esp. after surgery) and make sure to take preventative measures like standing up to walk around on long flights.

 Traditionally, blood clots were treated with the blood thinner warfarin (Coumadin is its brand name). It takes a few days to get to the correct level in your blood, so you have to be on injections of another blood thinner Lovenox (twice a day, at home, injected yourself) until your “INR” reaches the right level in your blood. While on warfarin you have to have regular bloodwork to check your INR - every few days at first, then weekly, and if you’re on it long term the tests become less common.

This is very challenging for me - after ALL the health issues I’ve had, my veins are completely shot. Even basic blood work is a challenge.

There is a newer genre of blood thinners out there called DACOs - you’ve probably heard of them (they include Xarelto and Elliquis) which are better for a couple reasons, I guess, but the main one for me is the lack of required blood thinners. Three guesses on whether my health insurance approved them? NOPE. They sent me into pre-authorization hell (which frequently means “nope never going to happen” but in this case I hope means “well if your doctor pushes hard enough, we’ll give in eventually).

Question: has anyone gotten one of the DACOs approved? Is there anything specific that you had to prove? How did it end up working out?

If you are someone who menstruates, just be aware - going on a blood thinner can cause your period to start early (mine started less than two days after starting them - at least a week or two early) AND it will make your period longer and heavier. 

P.S. - the GYN I saw yesterday said that Xarelto would make that even worse which leads into a later part of this post, but basically she said it was really important that I get my IUD replaced if I was going to be on Xarelto long term.

Since this is my third blood clot, it may mean that I will have to be on blood thinners permanently, which I’m not looking forward to AT ALL. Because really, do I need another medical complication? The answer is no. No, I do not. WHICH MAKES THE NEXT PART OF THIS POST IRONIC.

So this is the part of the post that I could actually use some advice on. 

So for a while, maybe as long as a year, every CT or MRI I’ve had has included a note from the radiologist saying that a benign ovarian cyst was seen on the scan (or sometimes it was called an “inclusive cyst” from the ovary into the peritoneal area. It would sometimes “recommend follow up with a GYN”. Okay....fair enough.

When I asked my GI and my PCP about it a long while ago (maybe even two years ago), they both sort of just said “sure you should see an OB-GYN about that at some point” but really didn’t follow-up on it. And then time passed because I had a LOT of other health issues that took precedence.

Sometime nine-months to a year ago, I started having pain in the area where my rectum used to be, especially when I was sitting at my desk at work. There were days it was so bad that I could not sit directly on my butt at all and had to constantly find different positions. And on those days, I would frequently also have pretty severe pain in my pelvis. For months I basically ignored it...again, I have chronic pain and I had bigger fish to fry. Again, it got put on the back burner. Until one day it was so painful I was crying at work. So I called my PCP who also called my GI and he looked at my scan and said “it’s probably that cyst, you should see a GYN....” Still no urgency (and my PCP even said “I don’t know i it’s that - sometimes doctors like to blame cysts when they just don’t know what else is wrong.”) Again and again, this cyst was acknowledged but treated as no big deal - a nuisance to be dealt with eventually.

Side note: at no point in this did my PCP or my GI bother to ask me about pain with sex, despite that being a somewhat obvious question.

So nine months ago (or so), my PCP finally did get me a referral to see someone in the minimally invasive surgical OB-GYN office. I called to make that appointment and was told “you cannot see a surgeon until you’ve seen one of the GYNs” so I got an appointment for several months later with a GYN in the office. 

Then, I had to cancel two different appointments with her because I kept being sick and/or in the hospital...and of course, each new appointment was two-three months later. 

So my appointment with the GYN (who was lovely) was yesterday. She told me that my cyst (which is in both the ovary and the peritoneum) is now the size of a GRAPEFRUIT! It is almost certainly to blame for the pain I get sometimes in my (former) rectal area and the pain I have when I have sex. She said that even if it’s “benign”, if it’s symptomatic like this, I shouldn’t have to live that way. For the first time, I had a doctor who I felt like was taking this issue seriously even though it wasn’t related to my IBD and was “just” a lady issue. (Though to be fair to my PCP, she has taken it seriously in the past, but it’s just not her specialty).

This GYN also said she’d be willing to take me to the procedure room and sedate me to put an IUD in, whether I have surgery or not because I had such a bad experience getting it last time!!! I really loved that she took my concerns about that seriously. Bless her.

So the (very extended) upshot is that I made an appointment with the minimally invasive surgeon who I was supposed to see SIX-NINE months ago (who, amazingly enough, had an appointment available MONDAY) and I may need to have another surgery to take care of this cyst. This cyst that wasn’t always the size of a grapefruit....but years of being told that it was benign, to “check it out” eventually, and having all of my other health needs take precedence has now left me here. With a huge cyst that has ruined my sex life and is starting to seriously impact my everyday life too.

TL;DR? I have TERRIBLE LUCK. ESPECIALLY this week. And I’m just feeling absolutely overwhelmed, lonely, and frustrated. And if you’ve had experience having surgery for an ovarian cyst, especially one that’s “including” on something outside the ovary, I’d really appreciate your thoughts on the procedure and whether it helped and was worth it.

[uberrapidash]

This is a post I made on Facebook, but I’m also putting it here since I can tag it and find it again later.

Hey, guys.

This post is somewhat self-reflection, processing, and validation, and somewhat PSA-ish/FYI-ish since I am posting it online.

Mental health is nuts. It affects everything. I took an Adderall this morning for the first time in over a month and a half, and it changes everything. I know I have shared about how Adderall changes everything for me before, but this time is different in some important ways because of the circumstances.

At some point during the spring semester this year, I began seeing a new PCP and a new psychiatrist, since I'm in a new city and actually have health insurance. I was diagnosed with ADHD at the age of 29, this year. It was like a dream come true, because it was so incredibly validating, but also because I thought I would be able to get all the help I needed because I had this Very Important Answer now.

However, that was not the case. Upon diagnosis, I asked the psychiatrist if there were any support groups or resources that I could access to learn about my newly-confirmed Neuro-Divergent Brain™. She said she didn't know of any. So I have been learning about how my brain works through Youtube videos, Reddit posts, and the experiences that other people share with me.

At the same time that this was happening, I continued searching for answers about my ongoing mysterious health problems. One of the FIRST things that my PCP jumped on was to tell me, in clear terms, repeatedly, that I needed to ask my psychiatrist about putting me on something for "psychological pain." What she means by this is that she thinks that my body pain happens because of something going on in my brain, or that my brain is heightening normal aches and pains for some reason. And so I began taking Cymbalta (prescribed by the psych). This was later in the semester by now.

After being on the Cymbalta for about a month, I could no longer take my Adderall - I found that any time I took Adderall, I became extremely anxious, would physically shake and feel ill, and it was just all around a bad time. (Adderall is not a drug that you need to keep in your system - you can start it and stop it at any time. Cymbalta is one of those drugs that has to build up in your system. It takes like a minimum of two weeks to even start seeing how it affects you.) There was clearly something going on between the two drugs, so the clear choice was to not take the Adderall while I got in touch with the psych.

Now, at this time, I did not have an appointment set up with the psychiatrist, because she wanted to go two whole months before seeing me again (which seems like a really bad idea considering that I was still new on the Cymbalta... it baffled me when she told me that and I was not happy with it). So I made a mental note that I needed to make an appointment ASAP because this wasn't working.

Except... It's now July, and I still have not made an appointment. I have run out of Cymbalta and cannot get a refill because it needs to go through the doc. And I am in this situation because that's just how low-functioning I have been since starting the Cymbalta.

I needed to have been closely monitored. I needed to have frequent appointments. And when I didn't pick up the phone or return the calls to the psych's office, they should have kept calling me.This is the nature of mental illness. It controls everything. Your brain controls everything you do. I need someone to be assigned to my case to make sure that my life isn't falling apart, especially when I've been given new meds. I'm not the only one. And this isn't my first time going through something like this. The entire mental health field needs a lot of work.

Anyway... I haven't had Cymbalta in a few days, and I took Adderall today for the first time in a while. It's like putting glasses on. It's like an enormous heavy fog has been lifted. It's like I have been pulled out of a pool of molasses. 

So... I am now capable of making that appointment, which I actually needed months ago. How fucked up is that?

__________

This is what it's like to be on the wrong meds, or to be unmedicated:

Every day for over a month, I have woken up every morning thinking about all of the really important things that needed doing, but as if I were chained to a pole or being held hostage in a cage, I could not do them. I was so sick that I had thoughts of telling Aaron that I needed help doing these things, but I couldn't even communicate it to him. That might sound impossible to someone who has never experienced any sort of mental illness or brain fog or executive dysfunction, but I and millions of other people are crying out about how so very real it is.

Today, after starting to gain some separation from the Cymbalta and after taking an Adderall, here are some things that have been different that I wasn't able to do before: 

- I told Aaron basically the above paragraph ^^^ (Contrast: remaining silent on these problems... not communicating my plight at all whatsoever) 

- I reached out to two (2) dear friends because I wanted to know how they are doing (Contrast: not reaching out to the people I love, ever) 

- I drink water when I notice thirst (Contrast: becoming so thirsty that it's too distracting to ignore, getting a headache, increased body aches) 

- I changed clothes once I recognized that what I was wearing was too warm (Contrast: suffering for hours until I felt sick from being too hot and couldn't do anything else, until doing something to alleviate that suffering) 

- easily and efficiently gave my body breakfast (Contrast: not eating anything until I feel sick/am extremely physically weak) 

- nearly automatically cleaned up after lunch (Contrast: leaving the mess until it's in the way at a later time) 

- easily and efficiently picked up some dishes and trash in the apartment (Contrast: seeing dishes/trash, thinking "I want to clean that up/put that away," and not being able to make my body do the thing) 

- not running into things when I walk around, being able to carry objects easily, and being able to efficiently pick up and put down multiple items without much effort. AKA - better motor control 

- scheduled a time to go grocery shopping today (and I'm going to make a grocery list and meal plan after I'm done typing this) (Contrast: another day without having gone grocery shopping, another day of fast food)

The list goes on and will continue to go on...

__________

Shame on my PCP for pushing on the "psychological pain" thing instead of doing more to actually discover what is wrong with my body. Shame on me for seeing that red flag, but going along with it anyway. I feel like I'm constantly torn between wanting to trust medical professionals, who have had years and years of education and practice, and wanting to fight them. I thought I was in good hands. But add this onto the list of stuff that quickly built up with that doctor... I won't be seeing her again.

[wskynaida]

Need some dental advice?

NOTE: please, don’t tell me how much of a fuck up i am with this. I know. I’ve had bad dental history since I was a kid...i know I could have done better but just...I just need some advice. I’m also on mobile so I can’t do a read more

So, for the last year now, I’ve been having on and off dental issues. With this pandemic going right now, I’m actually really scared and I don’t know what to do. Any advice would be super appreciated

So, about a year ago, I went to my first dental appointment for the first time since my first college (I graduated that in 2011 - so at least 8 years. I had my wisdom teeth removed in 2010 and a root canal around that time too). I don’t take very good care of my teeth as is, and between my memory and lack of motivation - my dentist was nice, but when you spend 6 months brushing like you’re supposed to and then see her and says you’ve done nothing, so then the next 6 months you ACTUALLY do nothing and she tells you your teeth look great, it’s hard to stay motivated no matter how much it’ll effect a person’s health.

Anyways, last year in February, I had such a horrible toothache (upper left side) that I would wake up crying. It was so bad. I’d take pain meds, Orel gel. You name it. Nothing worked. I do fairly regularly do a mouth wash with coconut oil. Some days it helps, some days it does next to nothing. I ended up going to an appointment - terrified and getting no work done (because money was an issue). He prescribed me antibiotics. Things got better. I didn’t set up a new appointment.

Fast forward about 4 months, I get another tooth ache (bottom right). I end up in urgent care because I can’t see straight from the pain. Lo and behold, I have an abscess and they prescribe me antibiotics. I set up another appointment with the dentist from February. Can go in about 3 days later. I end up with an extraction and two root canals (and a $800+ loan to pay for it over 8 months).

I can’t afford going back because I’m now paying off the loan. Things seem to be fine? Both sides are no longer hurting, I felt pretty good. I’m paying off the loan and getting letters to set up follow ups - I don’t (because finances and fear). Around November, the original side (upper left) starts hurting again. Badly enough that I start up Tylenol again. It helps a lot.

Fast forward to February of this year and I finally see a primary doctor who prescribes me antidepressants. After about a week, the chronic tooth pain just goes away. I can’t explain it. I didn’t have to take Tylenol. Nothing. This goes for about a month. PCP ups my antidepressant. About a week after that, the original ache (upper left) comes back with a vengeance.

It’s been about a week now since it’s been really bad and I’ve done Tylenol, ibuprofen, sodium naproxen, Orel gel. I’ve done my rinses, brushing my teeth

I would call the dentist but one main issue. My state is on shut down until the end of April. There’s a dentist down the road who takes emergency appointments but I’m so damn scared. I have such anxiety with dentists and I don’t want to have another $800+ loan. It’s a different dentist. I know they take my insurance but I don’t know what to do. I’ve thought about asking them to just pull the bad teeth, but when I went to the first one last year he gave me a quote that I’d need either 13 root canals or 16 extractions...he didn’t want that (I’m only 29). But I can’t keep affording all these root canals. Last time I asked him if we could just pull them but he said he’d only pull them if I agreed to do partial dentures

I don’t know what to do...so I guess dentists of tumblr? If you’re okay with helping with advice...help?

[raysofgaia]

Bus Drivers and Corona

Note: This heartbreaking story was shared by a bus driver working in the Portland, Oregon area via the main Portland reddit page. No edits have been made by me.

“The last couple of days have been eye opening.

I was sent home after being exposed (in close proximity)to a woman who matched the description of a recent victim of covid19 in Clackamas county.

She was having trouble breathing. Trying to be pleasant, kept saying she felt dizzy and that her head and stomach hurt. Coughing sporadically. She was looking to get to Providence. I suggested she grab some fresh air at my time point since we had two minutes to kill before we could leave, and so I could distance myself from her since she refused to sit farther back. She could only stand 30 seconds of the wind before running inside saying it was too cold.

Sweating and swaying I kept asking if she was okay. Eventually I couldn’t take it anymore and asked if I could call medical for her, she complied. I parked my bus at 50th and Caruthers right in front of the Maverick apartment building.

The emt shows up wearing an N95 mask while I sat there completely unprotected and unprepared for this pandemic. He asked her symptoms and she coughed the whole time, red eyes, said she wanted Providence. Initially I thought she said she was 59 but when he asked she said 69. Reading this morning’s announcement of a woman who passed away at Providence hospital being 69 gave me chills.

When they sent me home I was instructed not to enter the garage under any circumstance, “Just leave your pouch in the seat and exit the bus at the spotter shack” I was also told to make sure I was clear for work (from my pcp) for the next day.

I walked back to my car because I was so scared to infect anyone. I knew I had just been in very close proximity with a woman on her way out of this carnation for 20+ minutes.

The advice nurse instructed me to take a shower and immediately strip my clothes off when entering into my home, as well as sanitize anything I touch between my car and the shower.

I continually think of every single action I made that day with tears running down my face absolutely terrified of infecting my kids.

So when my doctor asked me if I had any symptoms outside of this stubborn cough I can’t shake, and cleared me for work, I immediately doubted the safety measures put into place to protect our society.

When my boss had no problems with me returning to work, and in fact asking me to work extra on my day off(because my doctor said I was good to go) I really sat back and watched the whole thing play out.

The longer we stay in service, the longer we refuse to look at this pandemic sweeping through our nation and the entire planet, the more people that will die.

Yesterday a friend of mine passed away. Dan Wilson served the city of Portland for 30+ years. Solid man. Good human. They said he had a heart attack and it wasn’t covid19 related.

I’d be interested to see what the results would be if they tested him in an autopsy. To tell the full truth of why we have been robbed of his beautiful life energy. To tell the full truth of the risks that every single one of the “essential employee” fleet will be taking to continually provide services.

Shut down your restaurants for takeout and delivery please?

We don’t need convenient stores if it’s life or death, I wanna know the employees are safe, Dutch Bro’s, Starbucks, Taco Bell and Wendy’s.

Shut it down!

I may very well be the last non-emergency personal that woman ever saw before she died and she walked onto my bus and said to me, “Honey I’m home!” She was trying to make light of her dark circumstance, and I didn’t hesitate to support her and make her feel valued. I didn’t shout at her to back up, I suggested she sit, I could tell she was ill and I asked her to create space so she could breath easier, I tried my best but I’m not heartless and if I can tell someone next to me is dying I’m not able to clearly measure 3-6 feet. Now my cough is getting worse, I woke up with a headache, my chest hurts, and I’m cold but hot. I was gonna wait until Saturday but I can’t, calling my doctor today.

I’m so sad that we are all here as a society, that we can’t prioritize the safety of the people who are forced to work over the financial implications of shutting down.

I’ll tell you what, when everyone is dead, there won’t be anyone to drive the God damn bus.

[mirkwoodshewolf]

The gone but never forgotten queen; Brian May x reader

*Author’s note*

Hey guys well for those who have enjoyed the first couple of parts to “Soulmates through music” I hereby am proud to announce that I have not one but two that’s right TWO chapters for you all. So here my lovely darlings in the long awaited part 2. 

Now just be warned THERE IS SOME ANGST HERE. I tried to do as much medical research as I could so if there is anything I got wrong about it, please please please please please PLEASE inform me, especially if you yourselves suffer through this condition I have written. Other than the swearing contained in here and the angst, there’s nothing else really to be said about warnings. I hope you all enjoy this my darlings and be on the look out for pt.3 coming up shortly :)

Links to other parts.

Part 1     Part 1.5     Part 3       Part 4

Queen Taglist:

@geek-and-proud

__________________________________________________________

*1979*

It was the end of yet another show.  A stage handler handed me a towel and I wiped my forehead and dabbed my cheeks wiping the sweat that was pouring off my face.

“(Y/n) darling you were fantastic out there!” I heard Freddie’s voice praise me as I felt him tackle me from behind in a hug. I laughed and patted his hand as I said.

“Hey just doin as you taught me Fred.” I felt him kiss my cheek and that’s when Roger’s voice piped.

“Oi Brian, I think your wife’s replaced you with Fred!”

“Fuck you Taylor!” I cried out.  He stuck his tongue at me and I flipped him off meanwhile Brian and Deacy soon came into the view and I left Fred’s embrace and went to my husband’s and we kissed each other and I said to him.  “You know you’re the only guy for me right?”

“I would assume so my love.”

“You are never doubt yourself. To me you will always be my Emperor penguin.”

“And you’re my empress penguin.” We kissed each other again as Roger said again.

“God I can’t take this mushy gooey shit another second.”

“One day though Rog you’ll get that girl and then it’ll be our turn to make fun of you.” Brian said as he turned towards the blonde drummer.

In our dressing room we were all back in normal clothes and I was wiping away the makeup from my face when Freddie said.

“Come on darling we’re gonna head on over to the pub around the corner.”  I stopped wiping my makeup away for a brief moment and said as I turned towards the guys.

“You all go on ahead, I’ll catch up with you later.”

“You sure (y/n)?” asked Deacy.

“Yeah. Don’t worry guys I’m fine, now go on I’ll literally be right behind you.”

“Okay if you say so.” It was then Freddie, Roger and Deacy left the dressing room and headed on down to the pub we had passed on our way here.  I turned back towards the mirror and looked down at my hands and rubbed my left wrist as I could feel the numbing pain once more.

I felt two hands rub up and down my biceps and a kiss at my temple.

“Your wrists again dear?”

“Yeah, they’re even more numb than the last show we played at.” I felt Brian take one of my hands as he came around and knelt down beside me.  His long, calloused fingers very softly stroked my hands I turned to look at Brian and he kissed the underside of my wrist up to my palm before saying.

“Perhaps you should take a break from tomorrow night’s performance.”

“Brian this is the 12th show I’ll be missing of the tour. The press is starting to get on my ass on why I’ve been skipping shows, already spilling out lies about me.”

“Darling you know as well as I that the press always want to rile any famous face up, just to get us to really start something and make us seem the bad guys here.”

“I know, god why must they be so horrible to people?”

“That’s a question I wish I had an answer to.” He placed his hand against my cheek and said as he stared into my eyes, “But seriously, as your husband I insist you take tomorrow night’s performance off. Doctor’s orders.”

“But I don’t want to let the guys down. I feel like now I’m just being dead weight by skipping all these shows.”

“You know that they’d never think of you so lowly. They adore you, and they’re worried about you just as much as I am.”

“Well don’t. I think I’m just overexerting myself with all this new music we’ve been creating. Trying to improvise on how certain songs that don’t really need keyboard accompaniment would sound.”

“Just need a bit more rest, give your hands and wrists time to heal.” He finished for me.  I smiled at him and he softly smiled back.  “C’mon, let’s go home.”

“What about the guys?”

“They’ll be fine, you’re my number one priority right now.” Suddenly I was picked up bridal style. I let out a soft shriek and laughed as I said.

“Bri, my legs are fine it’s just my wrists that hurt.”

“But you have been standing all night long, your feet must be killing you my love, the least I can do it give you a lift to your carriage.” I laughed as I shook my head at him and said.

“You silly penguin.”

“Ahh but your silly penguin.” He said as his forehead touched mine, our noses just barely grazing each other’s.

“Yeah, my strong emperor penguin.”

“My beautiful empress penguin.” We Eskimo kissed each other and not once separated until we threw our heads back (think of it like the two penguin love gesture that they do when they nuzzle each other and shake their heads as they throw them back).

The next day while Brian had gone to rehearsals I stayed at the house with the kids and my mum who wanted to visit her two favorite grandchildren.  Almost a year ago, Jimmy had come into the world out of nowhere but we’re ever so grateful for our little boy, and of course little Chloe adores her brother. Even at only a year old she always want to be around him, they take naps together, they play together, eat together, swing on the swings together.

I just hope as they get older it’ll stay that way and that we don’t have to deal with any sibling drama.

Currently I was just fixing up the kid’s lunch as it was getting close to their lunchtime according to the schedule that Brian and I had agreed to while my mum entertained the kids.

“So how have things been going between you and Brian dear?” I heard her ask.

“Great mum. He’s still as humble as the day I met him, I can’t say the same for Roger though.” I teased.  “Okay give me my children mum, it’s lunchtime.”

“Okay my little duckies, you both ready for lunch? You both ready for lunch?” I could hear Chloe babbling cutely and Jimmy clapping his hands.  My mum soon came into the kitchen with both my kids in each arm and I cooed out as I reached for Jimmy.

“You ready to eat my little man huh? You ready to eat?” But as I went to pick him up by his underarms, I felt this sudden shot of agonizing pain.  It was like having a hammer suddenly slam right on your hand without warning or receiving an electrical shot times 50.

I cried out in pain which had my mum worried scared.

“Oh my god (y/n) baby what is it? What hurts?” With all my screaming and crying, it made the kids start to cry too.  My mum set the kids down in their chairs and came over to me and took my hands and placed a bag of frozen peas over them as she tried to soothe me.

Within fifteen minutes after icing them and finally getting the kids to calm down, the shocking pain was gone and replaced with the normal numbness.  My mum sat on the couch feeding Jimmy now after just feeding Chloe.

“How long has this been going on for?” I didn’t answer her.  “(Y/n) (m/n) May you tell me right now or so help me—”

“I don’t know mum, truly I don’t.” Actually that was a lie.  But I’m always been such a convincing person that I can make a lie sound like the truth.

Hell if I’m being honest, I think this pain first started the night Brian, Roger and I met Freddie.  The pain started up around then, it came in short intervals then it wouldn’t happen again for another few months or so.  But it truly started to get this bad shortly after Jimmy was born and of course Brian being the clever person that he is, saw right through my lies and I told him about the pain I’ve been experiencing.

“(Y/n) sweetie I really think you should see a doctor about this.”

“I have mum, the medics always tell me just to ice it, have it be supported at night and hope that it goes away.”

“Well what do those concert medics know? What I just witnessed it seems like they don’t know shit.”

“Mum!”

“I’m sorry but it’s true. I’ll make you an appointment with your father’s physical therapist and see what he says. I’ll even come with you.”

“No mum don’t. I’m not a little girl anymore that’s scared to go to the doctors. I can do it myself. I’ll find someone else to do this, besides somehow the press got a hold of where dad’s therapist clinic was and I don’t want to be bombarded with their bull.”

“Okay darling, promise me you’ll call me and tell me what the doctor will tell you.” My mum asked as she placed a hand on my cheek.

“I promise mum.” I rubbed her arm and kissed it and she wrapped her arm around me and I lay my head on her chest as she kissed the top of my head.

That night I lay there on my empty bed wearing one of Brian’s nightshirts wishing that he was here with me.  Truth is, I’m terrified about what I will find out.  I don’t know if this is some type of new cancer or if something else is truly wrong with me and I could be dying.  I didn’t want to die, I didn’t want to leave Brian, Deacy, Rog, Freddie or the kids this soon.

I gripped Brian’s pillow and softly cried into it trying to imagine being in Brian’s arms hoping that would bring me comfort but unfortunately it didn’t and I ended up crying myself to sleep.

The next few days were a blur as I tried to find myself the perfect doctor that wouldn’t spill the beans to the press about what I will find wrong with myself.  It was hard trust me, but I managed to find a perfect candidate; Dr. Stephen Matthews a PCP and neurologist.

I called his office and told him who I was and told him that if I were to meet him then there has to be utter secrecy of what will be discussed between us.  I wanted it to be just him and me in the room at all times, locked doors, blinds shut, everything.  

Amazingly he agreed to the terms and told me that his job was not only to diagnose his patients but also ensure the secrecy of their diagnoses.  It was then I made an appointment with him first thing the next morning.

At 4:30am I woke up and stood in the bathroom getting ready for my appointment.  After getting some makeup on, I then bumped it up a notch and put my hair in a tight bun before placing a wig cap over my head.  Once I had hidden all traces of my normal hair strands, I reached for the short asymmetrical pure black bob wig that sat right there on a mannequin head.

Just to fool around with the press, I still kept in touch with an old friend and my former roommate from University, Nadia Romanoff who was into theatre specifically hair and makeup and let me tell you she was amazing at it.  So amazing that she immediately got hired for the London Shakespearean theater to work for them, now she’s in the film industry in America.

Free of charge and as sorta payback for making me her guinea pig for most of the term that I was there, I had asked her if she could hook me up with some different wigs to which she replied.  So the 10 wigs I keep stored away with my concert attires, are all wigs personally made by her, made from real human hair donated from barbershops for purposes such as Nadia’s.

I placed the wing on top of my head and messed around with it and brushed it out until it looked like I had a completely different hairstyle, especially since I was known for my long (h/c). So with this hairstyle I would just look like another person.  I sighed deeply as I stared at myself in the mirror.

After dropping the kids off at Brian’s mum’s place since she was always an early riser than my own mum was, I drove to Stephen’s clinic. As the sun was starting to rise, I entered inside the clinic and walked down the silent hallway until I reached his office.

We then began doing various tests and x-rays on both hands and of course like all doctors he asked me the basic questions. When did it start? How long has it been going on for? Did I have any family history with this kind of pain, etc.

And it was then at 7:15am when Dr. Matthews came in and sat down in front of me with a file in his hand and he told me exactly what it was that was causing my wrists and hands so much pain.

CTS. Otherwise known as Carpal Tunnel Syndrome.

Having not heard of this before the first thing I asked him was how long I’ve got to live.  To which he answered that it’s not cancerous or even dangerous, but it’s apparently when there’s a pinched nerve in the wrists are blocked which is why I’ve been experiencing the numbness.

He said sometimes it is caused by over stressing of the wrists whether it was due to sewing, manufacturing, writing, or in my case, piano playing.  He also said some contributing factors to CTS was due to fluid retention during pregnancy or menopause.  He even mentioned that it’s not uncommon because women were three times more likely to get diagnosed with CTS than men were, so he assured me I wasn’t the only woman he’s diagnosed with this problem.

“Do you understand Mrs. May? The—way we go from here you can either continue home remedies such as icing and supporting it as you sleep along with some medications and some braces, or we could operate.”

“What would the operation entail?” I asked him.

“Well it wouldn’t be too excessive, just enough for a neurosurgeon to just cut the ligaments to relieve the pressure, no overnight stay required. But due to the severity and the amount of wait time you’ve had to get this checked out the surgery would pose an even greater risk than had you’d been diagnosed a few years ago.”

“What would happen to me?”

“There’s—a risk of potential nerve damage. There could be a high chance of you never being able to control your fingers specifically your thumbs, index and tall fingers. The choice is all up to you, I’m only just explaining the risks that could happened should you choose the surgical path. If not then it’ll just be home remedies and prescribed medication for the rest of your life to help with the numbness and the pain from spiking up as you had told me about when you tried to pick up your son.” I nodded my head and I asked him.

“Can you give me a couple of days to think it over?”

“Of course, for now I’m going to give you a pharmacy address for where you can pick up your wrist braces, then once you’ve reached a decision call me back and we can discuss on where we go from there.” I thanked him for his time and I walked down the hallway toward the exit.

Just before I could walk out the door, I soon heard someone say to me which echoed through the still empty hallway.

“Dynamite with a laser beam.” I stopped in place and turned to see a woman around my age with a brace on her wrist too.  The corner of my mouth lifted as I responded back to her.

“Guarantee to blow your mind.” Her eyes widened and I smiled softly at her and held my index finger to my lips telling her not to give away our secret.  She smiled at me and I walked out of the clinic and drove back to my step-mum’s house to pick up the kids and take them home.

A week passed and I still hadn’t come to a decision just yet.  I still wore the wrist braces but I was still on the fence about going on medications for the rest of my life or risking a surgery that could mess up my nerves forever.

As I was rocking Jimmy for his afternoon nap, a knock was soon heard at the door.  Jimmy grumbled and fussed at being woken up just as he was about to fall asleep. I sighed heavily vowing to kill whomever it was that was at the door for waking up my stubborn boy.  I reached the door and opened it and I was shocked to see just who was standing on the other side.

“Tim?”

“Hey (y/n), been awhile, hadn’t it?”

“Yeah uhh—” I didn’t know what to say to him.  It’s been god I don’t know almost ten years since I’ve spoken to my brother and now all of a sudden here he is at my doorstep.

“Can—I come in?” he asked.  Normally I would’ve declined this offer but I knew I had to be the adult here, we’re both grown ups now and it’s time to bury the hatchet. Plus he came all this way and it’d be rude for me to just throw him back out on the street.

“Sure, yeah please come in.” I opened the door further for him and led him inside.

We now sat in the parlor and I handed Tim his coffee just like how he liked it; black no sugar.  He set the mug down after having a sip and I held Jimmy close to me trying to get him to go back to sleep.

“Which one is this?” asked Tim.

“This is Jimmy, your nephew. Chloe is currently napping right now. But you can look through that album under the table at Chloe’s baby book.” He nodded and took Chloe’s baby book out and began browsing through it.  He softly smiled and said.

“She looks just like you did when you were first born.”

“That’s what mum said.” Silence rang through the room and that’s when I said, “Tim not that I don’t appreciate you coming here but—why are you here?”

“Mum told me about your diagnoses that your secret doctor gave you, that CST.”

“CTS.” I corrected him.

“Right. Back when I got into Humpy Bong our pianist was diagnosed with it as well, completely ruined him. So much so that he thought he had no meaning left and he actually overdosed. When mum told me that you had it I—I just wanted to make sure you weren’t gonna…..you know.”

“Tim…..”

“I know that I haven’t been the best brother to you, hell I was a total wanker to you growing up. Pushing you too hard, I feel like this is my fault and I just….”

“Tim stop.” I told him.  He looked up at me and I sighed deeply before saying calmly, “I don’t want you to feel guilty or anything. There’s no reason you should even feel guilt. Well I could let you but I’m a mother now and I want to teach my kids that holding grudges never solves anything.” Tim choked out a laugh and I continued, “But what I do ask of you is that you don’t feel sorry for me, okay? I don’t want any sympathy or frowns or even tears about this. Stuff like this just happens, and for women it’s more common why that is I have no idea. Wish it didn’t but it does for whatever goddamn reason.”

“I want to make things right between us. So if you need anything, and I mean anything at all. You know you can always call me, right?” I smiled softly at him.

Seeing the soft look in his eyes, that’s all I’ve ever wanted from Tim.  His acceptance and the true love of what an older brother is.

“Thank you Tim. You have no idea how long I’ve waited to here you say those words.”

“I should’ve said them to you from the beginning. I failed you as a brother, but I want to make things right now. Will—will you give me another chance?” I looked at my brother and softly smiled at him.

Suddenly the front door opened again and I heard a familiar voice call out.

“Darling we’re home!” Soon the boys came around the corner of the house and when they saw Tim, both Brian and Roger were shocked to see him after all this time.

“Tim.” Muttered Brian.

“Brian, Rog, long time no see huh? Good to see you all have made a good name for yourselves.” Answered Tim.

“He’s not bothering you, is he (y/n)?” asked Roger succumbing to his protective instincts that he’s had towards me.

“Calm down Rog, everything’s good. I invited him over, felt like he deserved to meet his nephew and niece. A visit that was long overdue, right Tim?” he turned toward me and he went along with it.

“Yeah. But I don’t wish to impose any longer, I’ll see myself out.”

“Nonsense. I’m just about to start dinner, why don’t you stay?” I said to him.  Tim looked at me unsure but I gave him an assuring look telling him that there was no way he was getting away that easily.

“If that’s alright with you lads.” It was then Brian spoke up.

“I don’t mind. You did come all this way, plus you do deserve the chance to meet your niece and nephew face to face. Where’s Chloe at love?”

“She’s napping, though it is around the time she should be waking up. Why don’t you go get her Brian?” He nodded then went upstairs to go get Chloe.

“I can take him if you’d like (y/n).” said Deacy.

“Thanks John.” I handed him my son and I went over to the kitchen and that’s when Freddie and Roger came in and they asked if I needed some help.

I asked Fred to help me with some of the cooking while I had Roger set up the table.  After that boiled egg incident at Ridge farm, I vowed to never let Roger near a kitchen stove ever again so setting up the table is what he’ll be stuck with.  Once the pasta was ready, we all set down to a family dinner and I was told by the guys that they officially had a week break to rest up before they would head to America to finish up the tour.

So throughout the night it was spent just catching up and for the first time, Tim and I began to connect with each other as brother and sister.

Later that night after everyone had left the house and Brian went to bed, I silently slipped out of the bed and headed into the kitchen to make the phone call that I had been denying myself.  I held the phone to my ear and waited for it to ring before finally I heard his voice on the other line.

“Dr. Matthews it’s (Y/n) May. I’ve made my decision.”

A few days later with the help of Dr. Matthews, he gave me the prescribed pills that I would need to take twice a day one in the morning and one at night before I go to bed.  I kept the pills hidden so well that not even Brian would be able to find them or even suspect anything. The American tour dates were fast approaching so after the boys had their week’s rest it was time to get back in the game, and this time I was tagging along with them once more.

We were currently rehearsing “We are the Champions” and I was at the piano.  We were at the second chorus and I was doing good so far, the boys giving it their all and Freddie singing his heart out almost as if this rehearsal room was full of people instead of just us five.  

But by the second transition when the chorus needed to repeat, my wrists flared up even with the braces on and I missed a key. Which caused me to slam down the left side keys of the piano before leaning my head against my hands and holding them together trying to get the pain to stop.

“Yep, let’s call it.” I heard Deacy say as everyone stopped playing and agreed.

“Sorry. I played like shit.” I complimented as I shut the lid protecting the keys.  “You boys are lovely, sounded good.” I told them as I spun around from the piano bench as I saw the boys packing up their stuff.  “God if Elton heard me play like that he’d slap my hands like a Catholic professor.” Which made the boys chuckle.

“No worries darling, we’ve still got three days till we head out for America.” Freddie said as he took a sip of his beer.

“We’re in a good place love, your hands just need a bit more rest. That’s all.” Brian said as he stood before me and took one of my hands and stroked the brace. “How ‘bout when we get home, I give your wrists the proper massage, hmm?”

“Sounds divine my love.” I said lovingly to him. He smiled softly and pecked my lips before joining the guys in the back.

“You fancy a drink Rog?” I heard Freddie ask.

“Yeah there’s that’s new pub they just opened that I’ve been wanting to check out.”

“Can I come?” Brian asked.

“(Y/n) can, you cannot.” Deacy answered.

“Yeah exclusive invite only.” Said Roger.

“Sorry darling reservations in advance, (y/n) got hers in before you did.”

“Okay screw all of you. I see how it is.” Finally I decided it was time.

“Before we leave; do you all have a second?” I said as I stood before them and looked at my four boys.

“Of course darling, what’s up?” asked Brian. I took a deep breath before stating bluntly and right then and there.

“I’ve got CTS.” Everyone looked at me confused as Deacy questioned.

“What’s CTS?”

“Carpal Tunnel Syndrome.” It was then the expressions on Freddie’s, Roger’s, Deacy’s and Brian’s turned to shock.  “It’s when my wrists suddenly flare up in numbness or pain, that’s why my piano playing has been shitty lately, and the reason for the pain I’ve been experiencing these past couple of years.”

“(Y/n) dear I—I’m so sorry…..”

“Freddie stop. Don’t you dare.”  I looked down at my wrists before looking back at the boys and said, “Right now, there’s only 7 people who know about this, okay just 7. You four, my mum, brother and of course Dr. Matthews. Now I don’t want to hear any sympathy, see any frowning or bitching about how I should continue to take breaks. Because all that’ll be is just wasted time, time that I can spend playing alongside my boys.”

Each of them looked at me with faint tears in their eyes or looks of awe.

“This tour means everything to me now, because—I’ve come to the painful decision and it kills me to even say this but I know that if I continue to deny my health, then I’ll never use my hands to even be able to hold my children or any future children I may have.” I now stood by the piano stroking the smooth, cold black top, I took a deep breath and announced, “By the end of the year, I’m resigning myself from the band.”

At that announcement, the boys looked at me in shock.

“But until then, I’m not going to be what the press will refer to me as in the future. The “female shadow”, the “Forgotten Queen of Queen”. No, I decide who I am. And I’m going to go out being what I was born to be. A pianist, who deserves to be amongst the greatest piano players in history. Beethoven and Mozart, those classical bitches haven’t got a thing on me. (Y/n) (m/n) May.”

My boys looked at me with sad smiles, eyes of amazement and gentle nods.

“You’re the true queen of Queen (y/n).” said Roger softly.  I smiled and lowered my head and said.

“You’re damn right I am. We’re all queens. But you’re right, I am the true queen out of all of us.” The boys softly laughed and I told them.

“Now you all just give me time to get these bitchy little wrists back into shape, and we’ll make sure that any other tour you four will continue on in the future, won’t compare to the one we’ll give them in just three days.” They all nodded.

I walked towards them and we all got into a group hug and couldn’t help myself.

“And even though you four are crying like little girl scouts, I still love you boys.”

“Alright enough of this!” Proclaimed Freddie.  It was then they tried to re-masculate themselves up by talking about how many drinks they were gonna get.  I then cried out to them that there was nothing wrong with being sensitive but they elected to ignore what I was saying and tried to be “real men again”.

That night as I was getting into bed, I stared at my left wrist brace and sighed solemnly when I felt a pair of arms wrap around me.  A mess of soft curls tickled my neck as I felt kisses going up my neck.

“Have you taken your pills for tonight darling?” Brian asked.

“Yes mum.” I teased him.  I turned to face him and he looked down at me solemnly.  I looked up at him and said, “I thought I said I didn’t want to see any frowning about this?”

“I know I’m sorry. I just—I just wish I could take this pain away from you. I’m your husband, I’m supposed to protect you from everything.”

“You know I can take care of myself.”

“I know. But still I wish I had seen the signs. I could’ve….”

“Brian, none of this was your fault. You didn’t give this to me, things like this just—happen. And I wish it didn’t happen to me, but I pushed myself too far to achieve the dream and now I’m paying the price for it. The only one who should be blamed is me.” He stroked my cheek with his thumb and I leaned into his palm.

“You don’t have to be strong right now.” He whispered.  I looked up at him and just one look into those blue eyes broke me.  Tears ran down my face and Brian pulled me close to him and for the first time since my CTS diagnoses, I finally released all the anger, pain, heartbreak and sorrow I had built inside of myself.

I maybe acting crazy right now, and you all maybe thinking why go back and forth between acting so strong and talking so big, to breaking down like a child in my husband’s arms.

Well I’m finally in the prime of my life of a successful career, I’ve finally reached my dream of becoming a kickass pianist for the hottest band in the world.  But now it all came crashing down with this diagnosis and because of my arrogance and ignorance, I’ve costed myself this dream.

And to a pianist not being able to play the instrument they were born to play, that’s a fate worse than death.

Brian spoke not a word because at this point no words could heal the anguish that I was feeling inside at this very moment.  All he did was hold me as tight as he could, allowing me to release my pain in any way that I wanted to.  Eventually I had managed to vent myself out to the point of exhaustion.

Brian adjusted himself on the bed but not once broke his embrace on me.  He stroked my hair and I felt a kiss at the crown of my head and the last thing I heard him say before I fell asleep.

“You’re a fighter my love, my proud fighter.”

The tour in America continued as planned.  When it came time for the concerts, Fred actually sat beside me and the two of us would play a song together and if a pain flare grew too much for my braces, then I would stop and allow Freddie to continue, and when I felt lime it I’d come back and he’d back off and go back to doing his thing on stage.

In a way it worked out wonderfully, almost like it was a complete rehearsed tid-bit of us playing together then allowing one or the other to play solo before coming back as a duet.

All too soon, the year was coming to an end and not only that but it was also the end of another decade.  The 70’s after tonight would forever be behind us leading us into the 1980’s and god knows what was going to happen then.

I was currently sitting down with Miami as well as mine and Brian’s personal lawyer.  I had officially agreed to give a public statement of my condition to the public just so that way everyone knows about my CTS and the press don’t make up some bullshit story of me causing drama for the band just because I’ve decided to call it quits.

“Okay so Mrs. May you have officially agreed to point out that ‘I (Y/n) May have chosen to resign myself from the band Queen due to medical reasons. I wish to bring up the fact that I have been diagnosed with Carpal Tunnel Syndrome and that is my sole reason for leaving the band’ is that correct?”

“Yes Graham, that is correct.”

“You also wish to ‘ensure that this has nothing to do with creative differenced. This is solely for my health and for the benefit of the band.’”

“Yes.” I answered bluntly as I rubbed my right wrist. He wrote down a few more things and he said as he closed up his file.

“Okay, that’s that. This will be released to the press first thing in the morning.” I didn’t speak another word to him as he left leaving me and Miami alone.

“You sure about this love?” he asked me.

“If I keep pushing myself at this rate, I’ll risk an even greater risk of my CTS flares. It’s for the best, and I don’t want to bring Queen down because of it.”

“Okay, we’ll miss you.”

“And I’ll miss you all, promise me you’ll take care of them for me Jim. You know how they can be.”

“You have my word, it’s been an honor seeing you perform (y/n).” He held out his hand and we both shook on it and said.

“Thank you for being probably one of the nicest lawyers we’ve ever had.” It was then I kissed his cheek and hugged him and he instantly hugged me back.  He patted my back and I held him tighter.

And just like Graham said, at the start of the New Year, the news was eating up my departure from Queen like wolves on a carcass. Every single news channel was talking about it, the tabloids blew up pictures of me along with the boys as a ripped up image representing me splitting from the band to make it seem more dramatic than it was.

The paparazzi were circling outside just waiting for me to come out just so they could hound me with questions.  I couldn’t even take my children out to the backyard to play outside or swing on the swings with them without risking them being exposed to the wolves outside.

I heard the door open and quickly shut and heard Brian’s voice say.

“Bloody hell they just don’t know boundaries whatsoever.”

“They never have darling, trust me remember that one bastard who actually managed to cup my arse that one time in Preston?”

“Boy do I. Roger and I nearly killed him right then and there for doing that to you.” He closed the blinds and sighed exasperatedly as he sat down beside me on the couch.

“Do you think I did the right thing?” I asked. Brian looked at me and I continued, “Releasing my leaving to the public? Did I do the right thing?”

“You did what you felt was right darling, it’s better they know it’s for a medical reason rather than whatever bullshit drama they can think of.”

“But I feel like I’m just causing more drama for you and the boys. I never wanted that to happen, I mean some of the tabloids are saying that I left because of my ‘womanly drama’ what the fuck is wrong with them?!”

“I wish I knew but (y/n) look at me,” I turned to him and I felt him grip my hands tightly yet lovingly in both of his and felt his thumbs stroke the back of my hands and along my wrists as he said, “Just know that the lads and I know the real truth. That we first heard it from you first about all this instead of reading about it in the tabloids. And fuck what some of them are writing, fuck them. Because they don’t know what you’re going through right now. But I do, so does Deacy, Roger, Freddie, your family. And that’s enough.”

“How did I ever deserve you Brian Harold May?” I asked. He smiled and pressed his forehead against mine as he said.

“Actually it’s the other way around my love.” I smiled as he brought his nose against mine and we Eskimo kissed before doing our little penguin nuzzle.  He then kissed my forehead and for the rest of the morning we just cuddled on the couch.

Later that day it was almost sunset and I was just setting Jimmy down for bed when I decided to just sit around and wait for Brian to return back from the studio.  I tried to find something to watch but all I could see was my face up on almost every bloody channel.

So I gave up on TV and just settled for a movie instead, I popped in Star Wars when I heard the door open and I heard Roger’s as well as Freddie’s voice.

“My lovely darling!” Freddie’s voice cried out. I shushed him and said.

“Fred I just put Jimmy and Chloe to bed.”

“Oh sorry dear, hope I didn’t wake the mini penguins.” He apologized. I rolled my eyes and that’s when I noticed the presents, in Freddie and Roger’s hands, a cake in Deacy’s and a bottle of champagne in Brian’s.

“What’s all this?”

“Well we’ve talked it over at the studio today and we felt like we needed to properly give our true queen of Queen a farewell party. Just to make sure she is never forgotten by the band, nor will she ever be forgotten.” Said Roger.

“So we cut rehearsal time today and we went out and got you these,” Freddie said as he gestured to all the things they bought.

“We tried baking a cake but we should’ve known that you are the true baker of the band, so we had to resort to a store bought cake.” Said Deacy.

“Awww you guys…..I can’t believe you would do this for me.”

“Better believe it darling. Though we still expect to see you at some rehearsals, still go to our concerts to support us and weekly updates on your recovery.” Fred said as he came up and wrapped an arm around my shoulders bringing me close to him.

“When I can find time in my busy schedule, you’ve got yourself a deal Mr. Mercury.” He gave me a one armed hug and kissed my temple and soon the celebration began.

The whole night was spent drinking, chatting and I was given special gifts from the guys.  Freddie had bought me a new jacket he had seen at the store and thought one person had to have it, Roger gave me the new David Bowie vinyl that I have had my eye on but never had the time to buy it, Deacy got me the new Elton John vinyl and he even got to have it signed by Elton himself.  It read.

My lovely (y/n),

Even though your CTS has stopped you in your tracks, never lose that passion for music. You are a firecracker and a worthy apprentice. Thank you for all that you’ve taught me and may our paths cross again soon.

Love and kisses,

Elton.

I got a little tear eyed and made a note to myself to give Elton a call later and tell him thank you for the lovely message. And Brian my ever so lovely spoiling husband gifted me with a brand new necklace with matching set earrings.  He also promised me another gift but that was for after the boys left to which the guys all gagged and mocked Brian.

I wiped away a tear falling down my face and that’s when Deacy noticed and said.

“What’s wrong (n/n)?” The guys turned their attention to me and I sniffled and said.

“Nothing. It’s just….I love you guys so much, I don’t know what I’d do without you.” They all awed at me and brought me in the middle of a group hug and that’s when Brian said.

“Better get used to it love, because even though you’re leaving the band, you’ll always be stuck with us.”

“I can live with that.” I chuckled as the guys hugged me tighter.

My name is (Y/n) May, from 1968-1979 I was a rock star.  In 1970 I became the pianist and keyboardist for a group that changed from Smile to Queen all thanks to Freddie Mercury.  Through Queen I wrote many great hit songs;

Keep yourself alive (co-written with Brian May)

March of the Black Queen

Killer Queen (music by me, lyrics by Freddie)

We will rock you

Somebody to Love

It was also through Queen that I met the love of my life and the father of my children.  It was through Queen I got to confess my love to Brian and thanks to that, I will teach my legacy to my children.

For I maybe gone from the band, but I know I will never be forgotten.  The true queen of Queen.

[happywitch416]

The further away I get from yesterday's appointment, the angrier I get. It was an appointment for Moose, he's been having trouble getting enough sleep. It's partially neighbors and partially ADHD. We have done all we can with the neighbors. He's been complaining about how his brain has been going so fast. So I figured a check-in was in order.

I got my ass chewed for 15 minutes because I never took him to see the psychiatrist and counselor. The counselor kept canceling. I would have him pulled from school and be en route and she would cancel. Everything has been marked in his chart as being our fault, we cancelled or skipped all the appointments and when I pointed out that we have even had an appointment canceled by her because she was not in, she yelled at me. "I never miss work, you are lying". I write everything down. Document or it didn't happen. I have it in my notes that she cancelled due to illness. Which whatever. But don't be a bitch. After that happened the third time with the counselor I let it go. With the psychiatrist, he has one. He's seen by one that works specifically with autism and she didn't feel anything was necessary but had some suggestions for when school started if the sleep problems continued that she thought his PCP could handle. 

We were all wrong. He can't take pills yet. I was 12 before I could handle pills. She referred to not taking pills as "it's just being afraid and you should have tried when he was younger then we wouldn't have this problem". I am sorry? What? Did you not pay attention the five million times we have said he tries but they make him gag and that he has food problems for probably the exact same reason? What we are dealing with is not fear, it just is what it is for now. But yeah, I'm a terrible parent for not making him take pills. Okay, Karen.

Moose was in fine form, and by fine form I mean he was bored. BORED. So was I. But he was spinning and jumping off the step stool, nothing dangerous, not noisy, not wild. Just something to do. And she was all "this chaotic energy just can't be allowed and you need to structure his energy usage". This is when I decided we need a new pediatrician. He was bored, if he was truly having an out of control moment, lol I would not have sat there and told him that was a sick spin he did while jumping. But who am I? A parent knowing their kid?

  Basically, long story short, especially if you have a special needs kid, make sure you get a doctor that is not a flaming jerk weasel. And who maybe knows the difference between "I am bored" and a meltdown, who doesn't tell the parent they don't know their kid and that they are bad parents. Don't use a medical system that is awful. We've had a lot of red flags but we figured it was because it was switching management, that's obviously not the case, they are just awful.  Now to find a new one.

[atleastninebees]

DLS #24

So, I’m doing this. My biggest secret yet. Let me preface this by saying the reason I kept this to myself wasn’t shame. I just didn’t think it would be the best thing for others to hear. No one wants to read about success stories while they are still suffering. Or so I thought. But maybe NDPH needs more success stories? I’ve only heard tales of the lucky (”it just stopped one day”) or the unfortunate (”I’ve had it for 40 years and no signs of slowing”). If you have NDPH or anything like it, I suggest you read this. 

On February 14, 2018, I woke up without a headache. I have before, once after eating a pound of cauliflower (don’t ask, but it was a delicious recipe) and finding out about its anti-inflammatory benefits the next day after a few hours of being pain-free (organic vicodin) ((enough beating around the bush)). This wasn’t like that. Nor was it as sudden as I’ve heard people with this condition say. 

I made an appointment with my old neurologist over a month before, because my pcp is an asshole. Because I hadn’t seen him in years, they made me take a 2-hour, bullshit “headache class”. You know, the ones where they tell you not to eat chocolate or drink coffee and other basic nonsense. It was mandatory before any headache related appointments. So I was a total whiny baby in class. Rolling my eyes and the like. But this doctor in charge of the class was not having the attitude. She began by saying “pain happens for a reason”. Even NDPH. Sure we all woke up with the headache and suffered ever since, but something caused it. We just didn’t realize it at the time. 

She asked me when I got my first headache. Easy. I was eight. I was playing on the playground and I came back inside with pain. The nurse said it was the sun and all the exercise. 

She asked if I ever had any trauma in my life. I usually lie about this because I don’t want to talk about what happened back then. But that day, I wrote down on my form that I was sexually assaulted multiple times. By my brother (fuck that guy). 

Then she asked, “when did it happen?” I used to think I was four when it began, but I’ve since researched and forced myself to look into it. It caused violent, graphic nightmares for many days before I suppressed that shit. But I was… eight. 

Oh no. 

Now, I was honest in saying I was a little shit in this class. And I’ll continue to be honest in saying that I put my form on my seat and walked out. Right past her. 

But things continued. Because as dumb a “coincidence” this was, this had nothing to do with NDPH, I thought. I was turning seventeen in a week. It was a boring, uneventful day. January 18, 2012. Even if my first headache corresponded to sexual abuse, this didn’t explain the start. 

So, I did some research. I have loads of journals. Mostly just a few sentences written a few times a week about nonsense – songs I’ve listened to, levels I just beat in a game, whiny teenaged stuff. I pulled up the stuff around January 2012 and it was just sudden. One day, a headache and my life spiraled down ever since. But I read backwards from there. (And honestly, I just like reading my old journals.) 

I read backwards from January 2012 and entries were uneventful until November 21, 2011 to be exact. (Side note: I didn’t come clean about the abuse until my brother had joined a gang and lost my parents favor in 2008. That’s when my mom asked me if my brother ever did anything to me. She meant physically, but I started crying and told her. He was later arrested for an unrelated violent offense.) In November 2011, he was finally being released. Incarcerated since high school, he was coming back home. I wrote that I was unsure how that would go. 

I didn’t write how it went. But it all came flooding back how it went. Badly, to say the least. My brother was suddenly in my house, compromising my safety. He liked to walk in on me changing. Or throw himself onto me and refuse to get off of me as I struggled. Not only compromising my only haven, but invading my personal space as if it were okay. This was common after he came home for a long time, corresponding to January of the next year. 

I reacted badly, of course, The next month of realization was occupied with the same violent nightmares of my childhood abuse and topped with newly surfaced memories of his return. Headaches had always been my body’s response to the deeper pain inside. It was my body’s way of saying “help, something is seriously wrong.” And leading up to Valentine’s Day, I was legitimately tired of reliving old trauma. And I got mad. No, I got pissed. Because back then, my mother handled it all so poorly. Telling me to lie to CPS, to stop exaggerating a little “play”, tearing up the comfort items CPS gave me, and becoming more protective of my brother than me. She never brought it up again. And for six years, my body has wrung itself inside-out as a cry for help and she’s told me time and time again that I just need to get over the pain and stop using as an excuse. 

So, I told myself the truth. I didn’t need to be in pain anymore. Help wasn’t coming. I see the trauma I’ve so carefully hidden away. And I may be having violent nightmares, but I started reading about how to heal from it all. And then, on February 14, I woke up without a headache.

I’d love to say I dusted my palms, high-fived my dog, and moved on from there. But the nightmares continued for weeks after that. I cried a lot and very little was from relief. I thought the freedom from NDPH, if it ever came, would be a celebration. But it was a war and I came back broken. Eight months have passed since then. I don’t have the nightmares. I still have the self-help books, follow blogs on trauma and abuse, and have to reaffirm that I’m on the right track.

I wanted people to read this because I didn’t believe it when that woman told me that there is no such thing as pain for no reason. And she was right. I don’t think people with NDPH or similar conditions are just suppressing some “big trauma”, either. But you should look. Analyze the small stuff. When it happened and what you were doing before. The mindset you were in. It may be something small you never put together. Pain isn’t something that entirely makes sense. Missing someone who moved away made you feel lonely and when your dog died five years later you started to believe you’d be alone forever and, bam, headache. I mean, I moved out at some point, and was hours away from my brother and I still had the headache because the headache started as one thing and perpetuated itself as its own problem. It became having a headache because you have a headache. But it started as something. Find that something and you’ll find yourself.

[hangonimevolving]

Attempting some gratitude, for once.

I need to post this, before the thought and the mood from which it’s sprung both dissipate into thin air.

I suck at gratitude, on the whole. Seriously, I do, and I know I need to work on that. I’ll spare everyone my sob stories, explanations, justifications, etc. for why I have had a hard time with gratitude in recent years, but suffice to say - I am aware that I suck at it, and I heard somewhere that the first step to solving a problem is admitting you have one.... so fine. I admit it. I’m ungrateful and unappreciative in my life most days.

But today, I’ve had multiple - MULTIPLE - moments of just feeling this weird, inexplicable, warm and fuzzy, happy, sigh-inducing THING just bubble up in me. And I was like WTF is this feeling?! Why is my tummy all glittery and light? Why am I sitting here on the sofa smiling for no damn reason?! OHHHHH! Wait! Is this.....gratitude?! HOLY SHIT, I think it is! So I’m gonna write it down and note it for all posterity. I, Evolver, have felt gratitude on this 7th day of September, 2018.

It all started last Saturday night, where, right in the middle of Labor Day weekend and my sister Rithers’ visit to our hike in Miami along with her hubby, Uncle K, and her kids H20 and NiNi, our 5.5-year old Vevvy fell ill. We thought that perhaps he was just overly exhausted from a long and happy day in the pool when he felt warm to the touch on Saturday night, but mid-day Sunday, during a beach excursion - Vev’s FAVORITE thing in the world, he completely fell apart, acting listless, fatigued, and not having fun at all. One look at him, standing statuesque on the beach, staring out to sea longingly while tears rolled down his cheeks, said it all: “what is going on?! I’m so confused, mommy! I’m in my favorite place in the world, and yet I feel so miserable! What is happening to me?!” A hand on his forehead revealed that he was burning up. Without a moment’s hesitation, Dr. Spouse loaded him up in the car and headed for home, while I remained at the beach with Dey to host Rithers and co. a while longer. Poor Vev needed a shower, some kiddie Tylenol, and bed rest, stat.

the “I am siiiiick” face :(

Over the next seven - SEVEN! - days, Vev would continue to have relentless fevers or 101-103F even with continuous children’s Tylenol and Motrin. He also developed monster congestion in his sinuses and nose, headaches, body ache, and general fatigue. I was sincerely shocked and more than a little intimidated by his congestion snot (keeping it real), which was so thick and oppressive, it would choke his throat and inhibit his from breathing if he dared to rest in even a semi-reclining position. 

The poor kid had no choice but to be completely upright if he didn’t want to gag on his own phlegm, which meant that he (and by transitive property, I) could really sleep no more than 90 minutes at a stretch for four nights straight. He was miserable, and I was doing everything I could to help him, staying with him each night either on an air mattress in my bedroom, or just holding him against my shoulder/chest in my bed while he desperately tried to sleep and breathe at the same time. I felt awful for him, and mused for a moment about parents whose children have respiratory disorders like CF who live their lives this way.... good health is such a blessing that we all take for granted.

As much as I hated every minute of Vev’s suffering, there was something a bit nostalgic in holding him sleeping in my arms for several consecutive nights. Wasn’t there a time in the not-so-distant past where this was the ONLY way he’d sleep?! I bitch and moan all the time about how clingy, dependent, and non-self reliant my kids are — but it has been years since Vev needed me at night this way. My Vevvy has grown up a lot.

And to his credit, despite all this sicky misery, he was really a trooper while ill. Against his traditional character, when sick or not, he really didn’t complain much - just went quiet and kept to himself for days, forming a little nest on the sofa each day with a warm blankie, big box of Kleenex, and his iPad, not really asking for much at all except quiet and rest. He never really complained when I had to give him medication, and he did his best to heed my urges to drink clear fluids even when I could tell he really didn’t want to. And - forgive the TMI here - but you know your kid is really growing up when they begin to have some way of forewarning you and/or running to the bathroom on their own steam and hitting the preferred target of the toilet when they’ve gotta vomit. Fortunately, Vev only puked twice this week, and I suspect that too was only bc he gagged on his own copious snot — but both times, he announced “throwwww uuuup!” to me before sprinting to the loo and handling affairs with no mess and accurate aim. HALLELUJAH! This should be considered a major developmental milestone!!! (And yes - poor, poor kid! I really am glad it was only the twice, because that must have sucked a lot for him!)

Yeah, so.  He’s growing up.  Way to go, buddy!!!... and, sniff.

(supposedly this says “Mommy I love you ”...  but he always starts writing at the bottom of a page and works his way up.  He may also be of the mind that “Mommy” is spelled “mom-E.”  Yes, we’re gonna work on it)

It was only yesterday, Thursday, that we got an official pediatrician diagnosis of his illness: the flu, as in the legit flu virus, or Influenza A. The word came too late for antiviral medications to be of any great use to him, unfortunately, but I was grateful anyway that we got a halfway-decent pediatrician BRILLIANT nurse practitioner who needed my assertive request demand for a prophylactic prescription or Tamiflu for Dey. We’ve had shitty luck in South Florida with pediatricians who appear to be reactionary and unnecessarily nonsensical in their responses to my requests for help - but this time, our pedi NP was A+. She treated our family like competent, educated people and did things that made sense as far as ensuring this highly-contagious virus wouldn’t spread to another healthy child living in the same household. I wish she could be our regular PCP (but of course, I bet she can’t be, bc she’s not a doctor. Grr, fucking managed care. Oops, hold it - I’m supposed to be channeling gratitude here, not my customary bitchiness. My bad.)

Anyway, speaking of Dey, I’ve got to brag about him a bit here too. At 3.5 years old, Dey’s baseline is definitely chill, go-with-the-flow, glass-half-full, and a pleasant, happy and easygoing “whatever you want, dude!”-ness that Vev NEVER was at that age. It’s been really awesome to see. But this week, his general outlook on life, combined with impressive moments of being a team player, cooperating, helping out, and exhibiting formidable empathy really made me sooo proud.

It’s certainly understandable that he’d be potentially jealous that his older brother got to skip an entire week of school while he still had to go. It would be even more understandable since they are actual CLASSMATES at school this year (yes, our Montessori school groups ages 4-6/preschool, pre-K and kindergarten in one classroom, so they’ve been together at school and at home since the start of the academic year). So I was very impressed when Dey accepted his brother’s illness and his need to stay home from school, while he was forced to go. Without one word of complaint, he’d get up each morning, eat his breakfast, get washed up and dressed out in uniform, gather his things, then visit Vev quickly and dispense a goodbye hug and a “hope you feel better, Vev!” before loading up in the car for school drop-off. What a trooper. At afternoon pick-up, when I’d ask about his day at school, he’d say with a little frown, “oh, school was okay...but Vev wasn’t on the playground.” It was kinda weird feeling my heart simultaneously break a little, but also burst with pride at how much he loves his brother. Sweet kiddo. 

At home, each afternoon he’d run excitedly to Vev to see how he was doing, his face full of hopeful anticipation that perhaps today, Vev was feeling better and could play with him... but when he’d find Vev too miserable and tired to play, his face would momentarily fall in disappointment, but then he would muster some compassion and understanding, silently shuffle away, and find a quiet game to do in the vicinity, just so he could be nearby without disturbing Vev. Or, cuter still, he’d snuggle down on the opposite side of the couch as Vev, and tune his iPad into the same YouTube video Vev would be watching, so they could give each other silly smiles and glances during the funny parts. The boy would periodically race off in the house to find his toy doctor kit, and would affix his little plastic stethoscope to his ears so he could “give Vev a checkup” and “make him feel better.” 

(Dr. Cutie Pie is in)

It was adorable, man. His whole world spins because of his brother. It’s so touching. I don’t know how it is that I managed to have two kids who love each other so much, because karmically I’ve done NOTHING to earn this. My sister and I were rotten to each other as kids, and only really turned a corner on it in our... what, our late 30′s?!  Haha :)  But I’m so grateful for these two dudes. These two little people are the best of friends, and they can’t live without each other. The feels.

One more funny brag about Dey. Dr. Spouse and I often jokingly refer to him as Dory, i.e. the lovable blue fish, voiced by Ellen DeGeneres from the Disney movie “Finding Nemo.” Dory’s schtick is that she’s easily distracted and has short-term memory. 

Fittingly, Dory is one of Dey’s favorite cartoon characters, and he’s not shy to let the world know....

Anyway. Remember that whole prophylactic script for Tamiflu? Mind you, I was so grateful to get it. But. Ummmm, pediatric Tamiflu tastes FOUL. It is seriously the most bitter, disgusting, viscous goo I’ve ever gingerly licked to mentally prepare myself for my kid’s reaction to. I began fearing Dey’s reaction, and the ensuing tantrums to come over the five-day course of the drug. But I spoke matter-of-fairly to Dey about how this was a medicine he’d need to take to keep himself healthy, and that it would be a little bit yucky, but that I’d give him a HUGE spoonful of sugar right after to make it taste better (and THANK YOU, blessed Mary Poppins, for your genius). 

 Luckily, little Dory just took my words at face value without any further thought, opened his mouth, and downed the nasty shot of devil’s semen Tamiflu that I dispensed into his mouth. Immediately his face went every shade of red, purple, and white, with a coordinating expression like “what the hell is this shit?!” — but I swooped in there prepared, like a crack-smoking Mother of Batman, giving him a swig of water then heaping a MASSIVE spoon of white sugar directly onto his tongue. The result was nothing short of magical - the kid instantaneously closed his eyes in pleasure, turned up his cute little round cheeks to the ceiling with a huge smile on his face, and loudly cooed “Mmmm!” as if it was the best damn thing he’d ever eaten in his life. Moments later, the sugar fully dissolved, Dey matter-of-fairly reminisced with a RainMan-esque tone, “hey mommy, that medicine was kind of yucky for me. Kind of salty. Kind of spicy. But the SUGAR WAS YUUUUUUMMMMMY!” I worried that at the next dosing (and man, the kid’s gotta take it morning and night, poor little dude) he’d run screaming from the salty spicy medicine, and wouldn’t fall for the sugar trick — but amazingly, when I announced “medicine and sugar time,” the child came RUNNING to me with a huge grin on his face like he’d just won the lottery. He gulped down the medicine like a champ, swigged the water himself, then began changing “Su-gar! Su-gar! Su-gar!” till I ladled a bit into his mouth.  Naturally, my mind spun forward a bit, concerned that his ease of overcoming the Yucky Taste Barrier and downing this stuff for a cheap reward might translate into some unsavory teenage and young adult behaviors (err, tequila shot champion in the making?!  Please god, help us).  But, for now - eternally grateful for my little Dory’s easy distractability and forgiving memory!!! Vev, at that age and even now, would have NEVER gone along with this!

(is it just me, or do they even kinda sorta look alike, Dory and Dey?  No one else sees it?!  No one?!!!  Hmm...)

Anyway. In conclusion, it’s not normal for me to have something kind of bad happen, like the flu hitting one of my kids, but finding some good in the mess. But here I am, in spite of myself, awash in all the warm fuzzies.

1. I’ve got two healthy, happy kids, when many people have children with serious health issues and have to live their lives watching their kids sick and miserable all the time

2. my kids are growing up, becoming wonderfully independent, self-reliant, empathetic and helpful. But they still sometimes need me, and that’s nice too.

3. They both have such fun, distinct personalities.

4. I admit that it’s pretty awesome that my second kid is so chill. Love them both to bits, but if kid #2 has been more ornery and neurotic, I think that would have sucked. Having a chill kid #2 is a godsend.

5.  They frigging LOVE EACH OTHER.  It’s a goddamn brotherly love fest up in here.  

6.  Last but not least - the flu sucks, but it isn’t forever, and life will go on.  Soon, in fact.  And we’ll be onto the next adventure together.  Look forward to seeing what it’ll be!

[rheumatologyandarthritis-blog]

15 Tips for Rheumatology and arthritis

Can little way of life changes assist you in dealing with your rheumatoid joint inflammation (RA) manifestations? This article gives you 4 basic ways of life tips that put you accountable for your rheumatoid joint pain.

Top to bottom Articles on Other Rheumatoid Arthritis Treatments

Elective medicines to help ease rheumatoid joint inflammation

Eating admirably when you have RA

Exercise

Drugs

Exercise based recuperation

The tips underneath will assist you with managing ceaseless joint agony and exhaustion normal RA side effects.

Try not to hold back on rest. Rest isn't an extravagance it's basic to your physical and mental prosperity. At the point when you rest, your body is working diligently recovering and fixing itself. In any case, rest can be difficult to find when you have RA must consult an arthritis doctor in thane.

To get you into a solid rest musicality, build up a rest plan: Every day, head to sleep and wake up simultaneously. Plan to rest 8 hours consistently. On the off the chance that you experience difficulty slowing down, wash up, do some profound breathing, or contemplate to flag your body to quiet down.

You can likewise converse with your primary care best rheumatologist in thane about different approaches to enabling you to rest: You may require a dozing prescription to assist you with nodding off and stay unconscious.

Eat a mitigating diet. Putting together your eating routine with respect to organic products, vegetables, and entire grains, is significant, yet is it enough? Notwithstanding eating these solid nourishments, have a go at including food sources that contain omega-3s, for example, salmon and olive oil. These nourishments have a calming impact eating them can bring down by and large aggravation levels in your body.

You might be keen on these related articles:

Elective Treatments for Rheumatoid Arthritis

10 Rheumatoid Arthritis Facts and Tips

Rheumatoid Arthritis Diet

Exercise based recuperation for Rheumatoid Arthritis

Likewise, attempt to restrict exceptionally handled nourishments and quick food sources since these nourishments can disturb rheumatoid joint inflammation manifestations. For more data on the calming diet for RA, look at our rheumatoid joint pain diet article.

Figure out how to deal with your pressure. Stress can worsen RA indications, with the goal that's the reason you have to discover ways that work to oversee it. There is various pressure on the executive's strategies. Some basic ones are profound breathing and contemplation.

Commit some time each day to accomplish something you truly appreciate: It could be painting or writing in a diary. Simply take the necessary steps to mitigate your worry in a sound manner.

Prepare for moderate exercise. Standard, low-sway practice is a brilliant ticket with regards to living great with rheumatoid joint pain. Practicing with rheumatoid joint pain can essentially calm RA side effects. It additionally helps your vitality, discharges endorphins (those vibe great hormones), fortifies muscles and joints, and builds your scope of movement.

Fuse a mix of the 3 sorts of activity high-impact, reinforcing, and adaptability into your activity schedule. Make sure to tune in to your body, and regard what it's letting you know. You don't have to work out for a considerable length of time each day simply do what you can.

These 4 rheumatoid joint pain way of life tips are straightforward things you can do to assist you with overseeing RA. Consolidating them into your way of life will push you to live well as well as flourish with rheumatoid joint pain.

Says Me McNeil, an RA patient, and writer of the book "The First Year: Rheumatoid Arthritis": 5 "It is essential to put one's wellbeing upfront and a backer for it. Handily said thus difficult to accomplish for an individual encountering torment."

Here are tips from these two RA patients and an eminent rheumatologist to enable you to get what you need from your primary care arthritis specialist in thane as well as guardian by conveying plainly about your wellbeing.

Shout out

"Something I've seen is that many individuals are hesitant to talk up to their primary care physicians, to raise questions and voice concerns," says Ashley.

Be that as it may, information is power. "You need to realize what you are managing," she says. "It's significant for patients to feel enabled, and to understand that ultimate choices are up to them."

Rheumatologist in thane, MD, 6 takes note of that throughout the decades he's polished, patients "have gotten significantly more of their own supporter," he says. "Thirty years prior patients wouldn't scrutinize their primary care physicians and now we anticipate it."

Get ready for the visit

Record any worries and questions, for clearness and to guarantee that your issues are canvassed in the constrained time doctors regularly have.

"Be explicit where it's stinging; to what extent it's been harming; what kind of torment it is; think about how best to depict this agony," says Ashley. "They need to know whether it is consuming, is it wounding, to what extent it's been going on."

The online life dear (Arthritis Ashley Facebook page has more than 6,500 devotees and 8,800 individuals follow her on twitter @arthritisashley) suggests utilizing applications, for example, My Fitness Pal to monitor side effects and triggers like nourishment, climate, stress, and work out. "Applications make it simple to record your perceptions and you end up with a day by day record which can assist you with seeing examples," she clarifies.

It's additionally critical to converse with the specialist about drug symptoms and antagonistic responses. "An excessive number of patients are hesitant to challenge their PCPs about horrendous reactions they might be encountering yet your experience might be one of a kind.

Explain your PCP's directions

"In the event that they are not speaking with you in a manner you comprehend you have to voice your interests and shout out," says Ashley. "Try not to be scared by clinical language. On the off chance that you don't comprehend what the specialist is stating you should state, 'I don't comprehend what you are stating, it would be ideal if you clarify it.'"

Ashley has met individuals who are reluctant to advise their primary care physician that they need to get off of medicine or look for a subsequent feeling.

"On the very basic level you have to feel you are in an organization with the specialist," says Mea. "Keep in mind, the specialist is working for the patient and when you are in torment that is anything but difficult to overlook."

In the event that your primary care physician doesn't care for being posed inquiries, Dr. Goldenberg exhorts discovering another person. He urges his patients to carry a relative to arrangements to assist patients with imparting their requirements. "I think the open exchange is significant,' he says.

Obviously, numerous patients take notes during the arrangement however in the event that you see that as an interruption or if your PCP is a quick talker and it's too testing to even think about keeping up think about approaching the doctor for authorization to record the arrangement. Numerous mobile phones accompany a voice reminder includes that makes it simple to do.

Following the arrangement, you may discover you have extra inquiries that you fail to pose or that didn't come up at that point. Ashley recommends asking the specialist the most ideal approach to contact him. A few specialists have a site where a patient can connect by means of email; a few specialists react to instant messages, as well. Remember that the workplace attendants and numerous drug specialists can likewise be acceptable wellsprings of data.

Try to avoid panicking

It's critical to abstain from getting enthusiastic. Data is better gotten when realities are serenely expressed, says Ashley.

"I think at times the less enthusiastic you are about it, the more genuinely specialists take you, particularly on the off chance that you are female," says Ashley, who has expounded on this sexual orientation inclination in medication for The Huffington Post7. "There is an immense shame with torment patients and ladies regularly face the generalization of being an insane patient."

Ashley is "mindful so as not to get excessively worked up, regardless of whether I am going to begin sobbing uncontrollably," she says. "I attempt to remain quiet, cool and gathered and approach it from a clinical outlook. I never let specialists scare me."

Be proactive in getting analyzed

Appropriately diagnosing RA can be troublesome because of its relative irregularity, burdening simply 0.5 percent of Americans, says Dr. Goldenberg, noticing that most by far of individuals who have a throbbing painfulness who are stressed over RA don't have it.

Ashley confesses to being totally over the top with regards to her clinical records. "The most ideal approach to be an educated patient is to monitor your labs and whatever else you can get your hands-on," she says. "Throughout the years, I've seen disparities that on the off chance that I hadn't seen could have brought about an inappropriate medicine or an inappropriate portion. Specialists aren't great. They can miss stuff."

And keeping in mind, those essential consideration specialists have made some amazing progress inappropriately diagnosing the infection, ensure you consider a to be at the earliest opportunity, says Dr. Goldenberg.

"The fateful opening to make an improvement with RA is somewhat limited," the rheumatologist concedes, "so the prior we can make a referral the better. Patients ought to know about that."

Speaking with a guardian

Ashley has been hitched for a long time, and her significant other, Mike, in some cases goes about as a guardian when she has flare-ups and terrible days. Before that, it was her folks. HereCan little way of life changes assist you with dealing with your rheumatoid joint inflammation (RA) manifestations? This article gives you 4 basic ways of life tips that put you accountable for your rheumatoid joint pain.

Top to bottom Articles on Other Rheumatoid Arthritis Treatments

Elective medicines to help ease rheumatoid joint inflammation

Eating admirably when you have RA

Exercise

Drugs

Exercise based recuperation

The tips underneath will assist you with managing ceaseless joint agony and exhaustion normal RA side effects.

Try not to hold back on rest. Rest isn't an extravagance it's basic to your physical and mental prosperity. At the point when you rest, your body is working diligently recovering and fixing itself. In any case, rest can be difficult to find when you have RA must consult an arthritis doctor in thane.

To get you into a solid rest musicality, build up a rest plan: Every day, head to sleep and wake up simultaneously. Plan to rest 8 hours consistently. On the of the chance that you experience difficulty slowing down, wash up, do some profound breathing, or contemplate to flag your body to quiet down.

You can likewise converse with your primary care best rheumatologist in thane about different approaches to enabling you to rest: You may require a dozing prescription to assist you with nodding off and stay unconscious.

Eat a mitigating diet. Putting together your eating routine with respect to organic products, vegetables, and entire grains, is significant, yet is it enough? Notwithstanding eating these solid nourishments, have a go at including food sources that contain omega-3s, for example, salmon and olive oil. These nourishments have a calming impact eating them can bring down by and large aggravation levels in your body.

You might be keen on these related articles:

Elective Treatments for Rheumatoid Arthritis

10 Rheumatoid Arthritis Facts and Tips

Rheumatoid Arthritis Diet

Exercise based recuperation for Rheumatoid Arthritis

Likewise, attempt to restrict exceptionally handled nourishments and quick food sources since these nourishments can disturb rheumatoid joint inflammation manifestations. For more data on the calming diet for RA, look at our rheumatoid joint pain diet article.

Figure out how to deal with your pressure. Stress can worsen RA indications, with the goal that's the reason you have to discover ways that work to oversee it. There are various pressure on the executive's strategies. Some basic ones are profound breathing and contemplation.

Commit some time each day to accomplish something you truly appreciate: It could be painting or writing in a diary. Simply take the necessary steps to mitigate your worry in a sound manner.

Prepare for moderate exercise. Standard, low-sway practice is a brilliant ticket with regards to living great with rheumatoid joint pain. Practicing with rheumatoid joint pain can essentially calm RA side effects. It additionally helps your vitality, discharges endorphins (those vibe great hormones), fortifies muscles and joints, and builds your scope of movement.

Fuse a mix of the 3 sorts of activity high-impact, reinforcing, and adaptability into your activity schedule. Make sure to tune in to your body, and regard what it's letting you know. You don't have to work out for a considerable length of time each day simply do what you can.

These 4 rheumatoid joint pain way of life tips are straightforward things you can do to assist you with overseeing RA. Consolidating them into your way of life will push you to live well as well as flourish with rheumatoid joint pain.

Says Me McNeil, an RA patient, and writer of the book "The First Year: Rheumatoid Arthritis": 5 "It is essential to put one's wellbeing upfront and backer for it. Handily said thus difficult to accomplish for an individual encountering torment."

Here are tips from these two RA patients and an eminent rheumatologist to enable you to get what you need from your primary care arthritis specialist in thane as well as guardian by conveying plainly about your wellbeing.

Shout out

"Something I've seen is that many individuals are hesitant to talk up to their primary care physicians, to raise questions and voice concerns," says Ashley.

Be that as it may, information is power. "You need to realize what you are managing," she says. "It's significant for patients to feel enabled, and to understand that ultimate choices are up to them."

Rheumatologist in thane, MD, 6 takes note of that throughout the decades he's polished, patients "have gotten significantly more of their own supporter," he says. "Thirty years prior patients wouldn't scrutinize their primary care physicians and now we anticipate it."

Get ready for the visit

Record any worries and questions, for clearness and to guarantee that your issues are canvassed in the constrained time doctors regularly have.

"Be explicit where it's stinging; to what extent it's been harming; what kind of torment it is; think about how best to depict this agony," says Ashley. "They need to know whether it is consuming, is it wounding, to what extent it's been going on."

The online life dear (Arthritis Ashley Facebook page has more than 6,500 devotees and 8,800 individuals follow her on twitter @arthritisashley) suggests utilizing applications, for example, My Fitness Pal to monitor side effects and triggers like nourishment, climate, stress, and work out. "Applications make it simple to record your perceptions and you end up with a day by day record which can assist you with seeing examples," she clarifies.

It's additionally critical to converse with the specialist about drug symptoms and antagonistic responses. "An excessive number of patients are hesitant to challenge their PCPs about horrendous reactions they might be encountering yet your experience might be one of a kind.

Explain your PCP's directions

"In the event that they are not speaking with you in a manner you comprehend you have to voice your interests and shout out," says Ashley. "Try not to be scared by clinical language. On the off chance that you don't comprehend what the specialist is stating you should state, 'I don't comprehend what you are stating, it would be ideal if you clarify it.'"

Ashley has met individuals who are reluctant to advise their primary care physician that they need to get off of medicine or look for a subsequent feeling.

"On a very basic level you have to feel you are in an organization with the specialist," says Mea. "Keep in mind, the specialist is working for the patient and when you are in torment that is anything but difficult to overlook."

In the event that your primary care physician doesn't care for being posed inquiries, Dr. Goldenberg exhorts discovering another person. He urges his patients to carry a relative to arrangements to assist patients with imparting their requirements. "I think the open exchange is significant,' he says.

Obviously, numerous patients take notes during the arrangement however in the event that you see that as an interruption or if your PCP is a quick talker and it's too testing to even think about keeping up think about approaching the doctor for authorization to record the arrangement. Numerous mobile phones accompany a voice reminder includes that makes it simple to do.

Following the arrangement, you may discover you have extra inquiries that you fail to pose or that didn't come up at that point. Ashley recommends asking the specialist the most ideal approach to contact him. A few specialists have site where a patient can connect by means of email; a few specialists react to instant messages, as well. Remember that the workplace attendants and numerous drug specialists can likewise be acceptable wellsprings of data.

Try to avoid panicking

It's critical to abstain from getting enthusiastic. Data is better gotten when realities are serenely expressed, says Ashley.

"I think at times the less enthusiastic you are about it, the more genuinely specialists take you, particularly on the off chance that you are female," says Ashley, who has expounded on this sexual orientation inclination in medication for The Huffington Post7. "There is an immense shame with torment patients and ladies regularly face the generalization of being an insane patient."

Ashley is "mindful so as not to get excessively worked up, regardless of whether I am going to begin sobbing uncontrollably," she says. "I attempt to remain quiet, cool and gathered and approach it from a clinical outlook. I never let specialists scare me."

Be proactive in getting analyzed

Appropriately diagnosing RA can be troublesome because of its relative irregularity, burdening simply 0.5 percent of Americans, says Dr. Goldenberg, noticing that most by far of individuals who have a throbbing painfulness who are stressed over RA don't have it.

Ashley confesses to being totally over the top with regards to her clinical records. "The most ideal approach to be an educated patient is to monitor your labs and whatever else you can get your hands-on," she says. "Throughout the years, I've seen disparities that on the off chance that I hadn't seen could have brought about an inappropriate medicine or an inappropriate portion. Specialists aren't great. They can miss stuff."

And keeping in mind, those essential consideration specialists have made some amazing progress inappropriately diagnosing the infection, ensure you consider a to be at the earliest opportunity, says Dr. Goldenberg.

"The fateful opening to make an improvement with RA is somewhat limited," the rheumatologist concedes, "so the prior we can make a referral the better. Patients ought to know about that."

Speaking with a guardian

Ashley has been hitched for a long time, and her significant other, Mike, in some cases goes about as a guardian when she has flare-ups and terrible days. Before that, it was her folks. Here and there, she says, as a patient, it's anything but difficult to get found prescriptions, agony, and specialists' visits and it's essential to recollect there's someone else included.

Ashley and spouse with hounds

Ashley has been hitched to her better half Mike for a long time. "It's essential to recall that your parental figure has needs as well."

"We have to ensure that the guardian doesn't generally feel like a parental figure and the patient doesn't generally feel like a patient. There's a great deal more to an individual than their conclusion and there must be more to a relationship than the patient-parental figure job, " says Ashley portraying the common regard she has with her life partner.

"My better half needs to consider me to be his significant other, not simply some debilitated individual he lives with and needs to manage," she says. "What's more, simultaneously, I have to acknowledge he takes on extra weights as a result of me and in view of my wellbeing circumstance."

In the event that Ashley is having an awful day, she advises her significant other early that she may require his assistance making supper, getting things from a store or in any event, opening a container.and there, she says, as a patient, it's anything but difficult to get found prescriptions, agony and specialists' visits and it's essential to recollect there's someone else included.

[kryssieness]

Something’s Wrong [CW: Doctors, misdiagnoses, non-diagnoses, complete disregard of medical professionals...]

So, for those who know me and those who know me through my crazy posts, y’all know I have some sort of autoimmune disorder.  I’ve been fighting to find out what’s wrong with me since 2014, though there were some things that popped up earlier that had me wondering.  So, here’s a bit of a timeline and a why I think my current diagnoses are bullshit.

2010 - I started back to school for a Master’s degree so I could continue on to my PhD.  I noted that I wasn’t losing weight like I thought I should, so I tried various diets, ultimately consulting with my sister (an RN) and opting to go gluten free.  After 6 months, my doctor decided to test me for Celiac.  Of course, nothing showed up because I’d been gluten free for 6 months.  Nothing further was mentioned on it.

2011 - In November or so, I decided to get super serious and start powerlifting.  I also chose to go Paleo.  

2012 - I started my PhD program.  I also started running training in the hopes of working up to a marathon. I noticed that my hands were having some issues when I was lifting.  Specifically, they’d not open when I went to release the bar after squats, bench presses, and deadlifts.  RA runs in my family and my sister suggested seeing a rheumatologist.

2013 - I was down to 155lbs and was pretty solidly muscle.  I still thought I was fat (and I still think that, looking at pictures from that time).  I felt great and was starting to work on training for powerlifting competitions by the end of the year...but, we had a car accident in April.  By July, I couldn’t walk, let alone run, and I’d been put off my trainings.  In August, it was suggested I get an MRI.  In September, they put me in a cast for 6 weeks to see if the ligaments would repair themselves (they did not). I gained back about 15lbs.  While being treated at the chiropractors, I’d mentioned that I thought I may have an autoimmune disorder like MS or something because my legs kept going numb, randomly.  They did a nerve conductivity test and said I was fine.  I never mentioned it again.

2014 - I had ankle surgery in January and made a full recovery by the end of May.  I spent 6 weeks walking around the UK, on my own, with no trouble (except the one time I slightly reinjured my right ankle in Belfast). Three months after I returned to the states, I was hit with intense pain throughout my body and debilitating fatigue.  It came from out of the blue.  The initial wave of pain I’d had before.  It was the muscle weakness that freaked me out.  My right ankle, my left knee, and my left shoulder -- all joints which had severe injuries -- hurt constantly.  I couldn’t lift my 18lb cat.  I couldn’t open jars.  My hands and wrists ached.  My feet were constantly on fire after walking.  I went to a rheumatologist who took X-rays, diagnosed me with fibromyalgia and degenerative joint disorder in both feet.  Also tennis elbow in my non-dominate elbow....which I couldn’t figure out.

2015 - I chose a PCP with a background in neurology who was also a naturopath.  We ruled out Lyme, Hepetitis, RA, CFS, and several others.  He didn’t believe fibromyalgia was an accurate diagnosis for me.  He said, “I think it’s a symptom, not a diagnosis.  We need to figure out what’s causing the pain.” At one of my in-residence weekends for my PhD, a classmate told me that everything I’d described about my disorder’s progression was identical to her daughter who was finally diagnosed with Juvenile Lupus.  She looked me in the eyes and said, “You have lupus.  I don’t care what your doctors think.  You. Have. Lupus.”  I brushed it off because....why would I have Lupus? 

2016 - My PCP decided to change directions with his practice.  Upon advice from another friend who is studying for his DO, I went to a DO for my PCP needs.  He diagnosed me with Mono, even though the test results clearly showed it was not an active virus in my system.  He decided to refer me to another doctor to be tested for CFS; however, he wouldn’t diagnose me and the referral would only take me if there was a diagnosis. I spent most of 2016 without medical care. This year, I was also diagnosed with Benign Joint Hypermobility/EDS.

2017 - I decided to go to Keck Medical of UCLA.  It’s a research hospital and I thought, at the very least, they’d think outside the box.  My first doctor was an RA Specialist.  She took X-Rays and drew blood.  The X-rays showed 0 damage to my joints, so it’s not RA.  My blood work (finally!) showed a positive ANA (1:160), high SED (20), and a high TPO (42).  Based on that, she said it was definitely not Lupus, but rather Hashimoto’s Thyroiditis.  Oh, and also definitely fibro (because “your points are tender” ... no shit, I have KNOTS in my neck, shoulders, and back...none of the other ones hurt) and osteoarthritis.  Even though I’m not 40 yet (I will be this year).  But, the high TPO is definitely Hashi’s.  Off to the endochrinologist. ....who found nothing wrong with my thyroid.  I saw a sleep specialist because the rheumatologist thought sleeping better would help my fatigue, but I sleep fine.  I have super mild sleep apnea, and only when I’m on my back, which is rarely (and by mild, I mean 9x/hr; 5x/hr is normal).  I also designated a PCP who won’t run any blood tests without approval from whatever specialist would be treating the condition being tested for..... >_<

So, here’s the deal.  I have photosensitivity. If I’m in the sun for an hour, with sunblock (and I mean SPF 30 or higher), when I come inside, the left side of my face, my chin, and both cheeks will be various shades of cherry red.  It’s not sunburned at all.  I know what a sunburn feels like.  By the next day, my skin is normal. I have a positive ANA reading.  I have non-damaging arthritis in my hands and wrists.  I get ulcer-like things in my nose (they don’t hurt, they’re just annoying).  Some days, it looks like I have a malar rash, but I don’t put much stock in that because it’s super faint.  If they were to run the anti-Sm, anti-Ro, anti-DNA and anti-autoantibodies (I think it is?), THEN we could definitively rule out Lupus.  But, they won’t. Or, I should say, they haven’t thought of it.  The high TPO alone is enough to diagnose me with Hashi’s (and fibro!)...despite that the Lupus Foundation of America even notes that a high TPO can be caused by Lupus (among 3 other disorders that I definitely do not have).  At this point, I have 3 of the 11 criteria for a Lupus diagnosis...if any of the other blood tests were to come back positive, that would be 4, which is what you need for a diagnosis of Lupus.  

Why don’t I think I have Hashi’s, per se?  Because you’d expect thyroid damage after 3 years of non-treatment.  But there’s 0 damage.  My hormone levels, in my opinion, aren’t right; but, they’re not treating me for anything.  I still have debilitating fatigue.  I take MMJ in the form of 20 mg, each, CBD & CBDA oils daily.  Those help with inflammation and fatigue.  Mostly.  My body’s adjusted to them relatively quickly, so I may have to up my CBD dosage.  I use 15mg chocolate pieces with a 1:1 ratio of CBD/THC (so, it’s 15:15) for pain and anxiety.  I can do up to 30mg without significant side effects, but it knocks me out, which is detrimental to getting things done.  My MMJ doctor is a DO and she was floored that my specialists aren’t treating the autoimmunity.  

Why don’t I think I have fibro?  Because fibro hurts.  It’s debilitating pain that lasts for days.  My pain does not.  Example!  Last night, I was having a flare.  I was super sick with gastrointestinal issues and running a mild fever (oh, right... I run a lot of low-grade fevers between 98.5F and 100.1F; my body temp is 97.6F).  I asked the husbeast to put some tiger balm on my back because that’s what aches when I have fevers.  From the top of my shoulder blades to about 2″ below where my bra strap would be felt like it was on fire.  Just that rectangular section.  The biggest source of pain/annoyance was right in the area where my bra strap would sit.  My arms were fine; my hips were fine (except for the right one which is still tight from slipping the other day); my chest was fine; my neck was fine; my elbows were fine; my knees were fine.  JUST THAT RECTANGLE.  That’s not fibro. My pain is also specific, not general.  It started out as general, but it has come down to very specific places such as my fingers/hands/wrists, my back between my shoulder blades, and my right calf (which is 100% due to the car accident). 

...but, doctors don’t listen to me.  My new PCP actually told me that I would probably feel better if I lost some weight.  I’ve lost 20lbs and I actually feel MORE TIRED than I did before.  So, clearly, my weight isn’t a factor.  Getting more sleep doesn’t help.  Taking vitamin D and B-12 hasn’t helped.... Maybe, JUST MAYBE, the fatigue is from something I can’t control......... maybe.

...maybe....we could try some type of new treatment? I mean, I hate to be that guy who uses Google and trusts Google over medical doctors, but when you get journal articles and Foundations who research this shit saying “High TPO also occurs with pernicious anemia, lupus, and diabetes type 1,” and you’re doctor is saying high TPO can only mean Hashi’s............ 

...I’m so tired of looking for doctors.  It’s why I haven’t gone elsewhere, yet.

[a-woman-apart]

Effexor Withdrawal (My Experience)

A/N: As I previously stated, this post contains information about medicine, medicine dosages, and side effects. Discuss all your concerns with your primary care physician or psych doctor before you make any changes. Do not discontinue any medication without first consulting with your health care provider.

Trigger warning: Briefly mentioned vomiting

Oh, so you thought the story was over?

It wasn’t.

In one of my previous posts, Advocating for Myself as a Patient, I briefly detailed that abdominal cramping and gastrointestinal symptoms, along with a “tingling” in my head and other parts of my body had accompanied some of my medication changes. I thought that a little rest and taking the probiotics might solve the problem. I also had nausea, and psychiatrist #3 had said that the Hydroxyzine would help with the nausea.

It did, mildly, but my symptoms continued to get worse and be overwhelming. After doing a little digging, I discovered that my cornucopia of symptoms (nausea, diarrhea/loose stools, abdominal pain, sweating, chills, shaking, nervousness, dizziness, weakness, confusion, and paresthesia/tingling) could be attributed to the discontinuation of Effexor/Venlafaxine.

I was on Venlafaxine ER (Extended release) and was still on the starting dose of 37.5 mg. When I asked psychiatrist #3 if it was okay to eliminate that without tapering, she hand-waved it. “Oh yes, it’s just a small dose.” To be fair, though, there is no smaller dose of Venlafaxine ER to help patients with tapering, and you better believe that patients have complained to the drug companies who make it.

Anyway, I continued to be violently sick. It may sound strange, but the paresthesia, and “brain zaps” were one of the most distressing symptoms, and what sought me to do online research in the first place. Sufferers have begun referring to the tingling sensation in the head and parts of the body as “brain zaps” because it can be described as feeling like a small electric jolt or shock. It is disconcerting, because it can coincide with dizziness, weakness, and lack of coordination. Sometimes I would have to lean against other objects for support when a “brain zap” hit me.

I learned that I was not alone. I found out that most people who try to discontinue Effexor—even under doctor supervision— experience even worse side effects than I did. I discovered that like me, most patients are not warned about how powerful this drug is. I was never told that trying to come off even such a small dose would cause such a terrible case of discontinuation syndrome. Discontinuation syndrome is a process of withdrawal that can occur when patients try to come off SSRIs (Serotonin Reuptake Inhibitors) or SNRIs (Serotonin and Norepinephrine Reuptake Inhibitors). You can read this Harvard Health Article for more information. More importantly, scroll down and read the comments, where patients detail how antidepressant withdrawal ruined their health and their lives.

I must stress that it is important that this does not mean that you should not take an antidepressant. If your doctor prescribes something, they are usually taking into account that the benefits outweigh the risks. However, some antidepressants like Zoloft and Effexor have a very short half-life, which means they stay in your system for a shorter time than other drugs (such as Paxil). This quick elimination of the drug from your body upon stopping the drug can cause withdrawal. It certainly does not happen to everyone, but it is a risk that patients deserve to be informed about.

To make a long story short, I ended up in the ER for 6 hours on the day that I was supposed to return to work. This was after rushing to urgent care, where I was told that urgent care was not equipped to treat my symptoms. At the emergency room, they did an EKG and took blood samples, including a lithium level (this was just in case the increase in lithium was causing my symptoms). My heart, thyroid, and kidneys turned out to be fine, and the lithium level was perfect. The doctor prescribed two different medications: Bentyl for abdominal cramps and another drug for nausea.

When I go to fill out the prescription, I see that neither drug was covered by my insurance. The Bentyl was $46, but the nausea drug was going to be $85 for 12 pills. Haha, no. So even though I’ve already spent over a hundred dollars on medicine and medicine co-pays this month, I am desperate, so I pay $46 for the Bentyl.

So, in the meanwhile, I can’t go to work the next day either (got a doctor’s note) and I’m taking the Bentyl with meals as prescribed. At this point, I’ve developed food aversions. I can’t drink milk, I can’t eat anything with too much sugar, and I can’t eat certain raw fruits, vegetables, and proteins. I’m weak all day, and so I spend the day trying to relax. I binged the entire Aggretsuko on Netflix. I am worried that the Bentyl is making my nausea worse, so I wish I had that other drug now but, alas. I ended up throwing up after taking all my night meds. My stomach felt better at that point, but I was also worried that I threw up all the good stuff I needed to help with my mood.

I ate some soup—which I was able to keep down— and went to bed.

It finally becomes Wednesday—and time for another group— but I went to my clinic early so that I can see psychiatrist #3 before group time. When I get in to see her, she is harried (it’s quite busy) and visibly annoyed at me for coming in to see her again so soon. I explained my symptoms and that I felt that I was experiencing withdrawal from the Effexor/Venlafaxine removal. I asked her about a remedy that I had seen online, which was to introduce a single dose of Paxil to help with the withdrawal symptoms. Paxil leaves the body slowly, so introducing that single dose can alleviate symptoms and aid in the tapering off process.

She told me, “Your symptoms are caused by anxiety. You need to take the hydroxyzine, and that will help with the nausea (again I saw scant evidence of that). There’s no smaller dose of Venlafaxine for you to take. The only thing we maybe could’ve done was to have you take the medicine every other day, until you came off from it, but you’ve already been off it for over a week.”

She then cautioned me from getting back on the medication, and I assured her that I had no intentions of getting back on it. Finally, she said, “If your symptoms persist see your PCP.”

I was slightly annoyed that with the risk of discontinuation syndrome associated with this medication, that she wouldn’t have encouraged that slower tapering, just to be safe. I had considered doing that every other day thing for myself, too, but when she hand-waved the side effects I just did what she told me to do. Also, the apparent lack of knowledge about the withdrawal was concerning. From what I saw, about 20% of people experience discontinuation syndrome, but with millions of people suffering with depression, those numbers are significant. Doctors need to be much less careless with this, and if they do not know there should be better education provided. So many people get back on their antidepressants just because the “brain zaps” and other physical symptoms of withdrawal become too devastating.

Withdrawal can last anywhere from 1-3 weeks, but symptoms can persist for months and in rarer cases, even years. This is not a matter to be taken lightly. One of the worst things was just not being informed. I rushed from psychiatrist, to PCP, to ER, and back to my psychiatrist because no one could tell me what was wrong with me or fully help. I have missed hours of work time, lost hours of sleep, and will have spent $100s once this is over. More importantly, because hypochondria/health anxiety is part of my anxiety disorder, I have agonized over what might be wrong with me. The emotional and mental distress—especially because I am coming out of mixed mania that may or may not have been exacerbated by the Venlafaxine—have been almost unbearable. Yesterday, I just kept crying because I was so paranoid that I was going to be met with suspicion or disdain when I returned to the workplace, because I had just missed so much time and I am only a part-timer.

Even today, my symptoms are not fully alleviated. I have not been able to walk in the park in days, laundry is piling up because I didn’t make it out there this week, and I still have to be careful with food. I’ve tried soymilk as an alternative to dairy milk, but I still don’t know whether my stomach likes it or not. I think I threw up because of the Bentyl, but I also did have a lot of soymilk that day (I might have to take my chances because I am fiending for a bowl of cereal).

In summary, dealing with a mental illness can be exhausting and your physical health may also be compromised. Doctors often either cannot—or will not— put themselves in the shoes of their patients. You must advocate for yourself. I cannot stress that enough. It can be difficult and costly, especially when your insurance does not cover everything. Your life is worth it, though, and your health comes first.

Finally, for the love of all things holy and true, do not come off antidepressants like Zoloft and Effexor cold turkey. I’ve read nightmare stories about people coming off dosages as high as 225mg and then just trying to stop. Bad, bad, bad idea. If 37.5mg did this to me, then imagine what a higher dose could do. I have even heard of people experiencing terrible symptoms when it was doctor-sanctioned and their dose was cut in half (like going from 150mg to 75mg).

Please be careful, y’alll.

P.S. I am aware that hydroxyzine is an anti-histimine (like Benadry). It’s off-label use is to treat anxiety.