#I’m thinking maybe it’s dysautonomia-related

[disasterhimbo]

Recently, a lot of the time when I stretch, I feel extremely fatigued immediately afterwards. Does anyone know what could be causing this?

[merlions]

in the past 2 weeks i

> got diagnosed w eds and pots

> also unrelated found out I have tourettes

> been on 2 planes

> did a family reunion

> helped my whole extended family b like "oh yeah i should probably get screened for eds and pots" which they have all had huge trouble w but never knew what was goin on w them (thank u friends w eds for helping me figure out that my body is a loose conglomeration of wet noodles and tachycardia)

> ran around on sand and hard floors and gravel without good arch support and usually without shoes period and fukt both my plantar fasciae again (NOICE)

> got only one very slight sunburn (he'll yea)

> got hives that i woke up scratching several nights which (tw skin related body horror) looked and felt like peanut m&ms under my skin

> carried my baby nephew around for long periods of time (BIG BABY......STRONG BABY....................heavy baby)

> for 7 days straight every day played games like the run and jump over waves game and the "throw a paper ball down the stairs and then chase it down and run back up and do it again" w my 4yo niece (i taught her the jumping over waves thing which makes them crash into her less hard bc she was scared of the ocean, which i didnt think was a game, but she definitely thought it was a game, i genuinely love kids :') ) (i was then inexorably trapped in every day playing the wave jump game w her) (it was fun but my body is a garbage fire) (stairs and jumping are so fucking awful for my heart/dysautonomia)

> for 7 days straight every day was helping w duties as a nurse aide for my grandfather (I'm certified) and spent a huge amount of time talking w him and helping him get exercise (he's 94)

> had brutal and intense conversations to facilitate repairing relationships between my aunts and uncles and grandfather

> powered thru on like 6hrs of sleep per night waking up at 9 or earlier every morning after months of waking up after 1p or much later

> drank starting at 11a for lots of the last 7 days

> took my adhd meds only 3x (a needed tolerance break and a break for my bod but a v hard willpower move)

> only ever had a chance to lie down while sleeping, no lying down during the day

> ate a flour tortilla I thought was GF right before getting on a plane bc this shitty restaurant didn't read my ticket (they look the same but I have celiac disease so they don't feel the same :) )

> barely checked my heart monitor (HUGELY difficult for me)

> carried 60+lbs of luggage while walking a few miles

> FUCKED up every joint lmfao im like in a full body cast made of bruises and braces and ice packs

> like half of my ribs are out of joint and I broke my wrist brace and strained my shoulders to fuck and maybe got a little whiplash from an almost collision on the highway while my roommate was driving me home from the airport (NOT their fault at ALL, ohio drivers are 100% willing and ready to die and take you with them to avoid extremely minorly inconveniencing themselves)

> my neck is crackling more than usual and the PPPD is STRONG baybey

> got! the! job! done!

tomorrow I've gotta start an extremely intense 2 days of moving bc my roommate wasnt able to get much done while i was away. then a couple days later im gonna start a job and then start nursing school in abt a month if the social security administration doesn't fucking destroy my life yet again (noice) so im just gonna try to pop some of these ribs back in and get some sleep. sorry this is incoherent I've been awake and exercising and running around and up and down stairs and traveling for 23 hours. chronic illness WHO???

fuck i need six weeks in bed

anyways goodnight

[joshhhhhhhhhhhhhhh]

God I love this artwork and these designs and just these generally striking and freaky visuals so much, what a pog show this is.

Anyway, Higurashi Gou episode 3 was pretty cool. A lot of what we learn this episode relates to the greater lore of the series, with the guardian deity of Hinamizawa - Oyashiro getting a lot of focus. And this dude intrigues me, right, cause he could just be any other guardian deity everyone pays their respect to every year. However, we also learn that over the last 6 years, one person has consistently gone missing while another died on the night of that one festival, and that’s actually attributed to Oyashiro as this curse thing. So do we respect this god and pay thanks out of genuine appreciation, or is it a fear thing, because of what he can do to people? Hinamizawa apparently used to be full of demons, maybe Oyashiro cleared them out or something? But then maybe the Curse of Oyashiro is just the residents scapegoating their god for their own murderous actions? Maybe Oyashiro’s not even real?

But then we also learn that Rena, adorable little Rena, started constantly reciting his name when she got put into counselling for having dysautonomia, which just means her nervous system doesn’t work quite right. Which should be weird since she only moved to Hinamizawa a year ago, right? Wrong! She lived there through elementary and then moved away, and is now moving back. Okay so she knows who Oyashiro is from that, but why suddenly start talking about him all the time in counselling? Is Oyashiro himself fucking with Rena? Is that why she smashed all those windows in middle school? Is that why she seems genuinely intent on murdering Keiichi at the end of the episode? I don’t fuckin know and I’m really excited to find out.

I was also a big fan of the scene where she calls him out for hiding secrets of his own when trying to pry secrets from her, like I’m totally with Keiichi here given the context of his situation, even if he maybe could’ve been more forthcoming about his reasonings for being suspicious, but it’s still great seeing Rena call out his hypocrisy anyway.

I think the one main criticism I have so far is that I’d like it if Keiichi were a more proactive protagonist. He’s not not proactive, took and read those newspapers to learn about Hinamizawa’s history and stuff, but he’s still fairly reactionary, with Tomitake and this episode’s newcomer Ooishi being his main sources of exposition and stuff. I like all 3 of these characters, and with Tomitake having disappeared alongside his maybe girlfriend Takano, there’s intrigue there, but Ooishi at least is so far just a mouthpiece for Keiichi to learn things he couldn’t figure out himself, and I just kinda want a bit more for everyone involved.

Of course, we’re only on episode 3, and the show cold opened on Keiichi killing all the girls, so I assume these criticisms will be addressed in due time. As it is now, I’m still having fun, I’m still engaged in the mystery, I have yet to feel lost or confused from having not seen any of the other anime adaptations, all that stuff. Show’s just poggers, and I’m liking it.

[cuntess-carmilla]

Update: I stopped taking psychiatric medication because they turned out to have only ever been of “help” because I have POTS/dysautonomia and one made my blood pressure rise (Wellbutrin) while the other kept it from going up too high (Lamotrigine).

Now that I’m taking meds that are for what I ACTUALLY do have (POTS/dysautonomia) not only do I not need the psychiatric meds, but they were throwing off everything else. I hate psychiatry so much. Can’t believe I turned out to be one of those people who had their physical illness mistreated as You’re Crazy for years haha. :) With that out of the way...

Some Many of my Opinions™ on psychiatry, as a psychiatrized person myself who does take medication, but hates the institutions of psychiatry and psychology, and thinks a large chunk of it is white pseudo-science:

A good amount of the issues that the psychiatric institution addresses ARE absolutely real and, as a society, people who’re afflicted by them should by all means receive help and support so they can live happier lives. I experience many of them and take medication to help myself, I obviously don’t think the difficult experiences people seek help for are made up.

At the same time, psychiatry and psychology as disciplines ARE made up (like every other discipline), making them not infallible or objective, AND they were built on eugenics, patriarchy, white supremacy and capitalist exploitation.

Those very real issues addressed by psychology/psychiatry aren’t actual literal pathologies. They don’t need to be literal tangible sicknesses in order to matter or be deserving of help and compassion. Your literal brain as a bodily organ is not physically “ill”, at least in most cases. It doesn’t need to be for your problems associated with an “ill mind” to be real and to matter. Remember, these disciplines were created at a time in history in which (white, male) doctors and theorists were obsessed with turning everything into a material, scientifically tangible subject that could be objectively measured with numbers and shit, hopefully medicalized or otherwise turned into “hard science”. That’s where ethnography came from. It’s called positivism, which is extremely dehumanizing, white supremacist and capitalist.

Psychology should be largely considered as much more of a metaphysical or philosophical discipline than as objective science, which is how most people perceive it to be. It’s mostly pure theory about emotions, thoughts, cognition, relationships and subjective experiences + perceptions -- which isn’t necessarily a bad thing on itself. It not being hard science doesn’t immediately delegitimize it. Get rid of the white capitalist idea that only (western, white) science and “objectivity” are real or of value. Actually, holding psychology to the standards of hard science turns it into pseudo-science, so... Yeah. I genuinely think we’d get so much further As A Society™ regarding psychology's potential to aid people who’re suffering if we treated it as more of a metaphysical or philosophical discipline than as some objective scientific truth.

Psychiatrists often are super ignorant of the actual way the medications they prescribe work or affect patients lmao. I had that almost ruin a whole semester at college because a shrink prescribed me meds that in combination she should’ve known would fuck me up. Not that much is known about how the human brain truly works compared to other human organs, you can’t expect psychiatric meds to be well tried and true. The research on psychiatric pharmacy is very lacking + biased in favor of pathologizing and controlling psychiatrized people, besides attempting to make the most profit under capitalism like any other capitalist industry, so of course they’re gonna prescribe you shit. Plus, like doctors of every other field, many psychiatrists arrogantly disregard the experiences, requests, questions and ideas of their patients, who’re the ones taking those meds.

Psychologists/therapists, just like psychiatrists, also disregard the experiences, requests, questions and ideas of their patients.

There’s such a strong element of power imbalance in how psychiatry and psychology function. The more a patient knows formal information about anything related to psychology/psychiatry, the more the shrink can get upset, distrustful and dismissive of them, saying they’re faking it, or telling them “not to do their jobs” when they so often do said jobs like shit anyway lmao no matter how thorough the research and understanding of the patient is.

Psychological and psychiatric diagnoses are just as made up as any other human construct (such as language, race, gender, etc). They’re not tangible realities as if shrinks had ran into a previously unknown objective fact of nature. In the realm of psychology, someone takes a bunch of traits and behaviors that by their observation they consider to be interconnected with one another, put them in the same bag, stick a label to said bag, and ask other psychologists if they agree with the bag being a thing. These considerations are heavily influenced by sociocultural bias. You can’t tell me it isn’t true that they’re made up and very subjective when “diagnoses” such as drapetomania, hysteria, homosexuality, gender identity disorder, etc, have been seriously considered at least by part of the psychiatric establishment of their times as legitimate mental disorders. Hell, some still consider being gay or trans to be mental disorders. Don’t get me started on "Oppositional Defiant Disorder”, that shit’s just evil.

A lot of the ideas spread by the psychiatric-psychological institution are legit pseudo-science that researches try time and time again to prove and end up coming with nothing, or they end up tweaking their own research or conclusions to maintain the established consensus that just so turns out to be very convenient to the people who make and sell psychiatric meds.

Many of the traits, emotions, thoughts, perceptions and behaviors that are pathologized by psychiatry and psychology aren’t inherently harmful. If they don’t make the patient or others suffer by their very nature (as opposed to like, homophobic parents “suffering” because their child is gay or a gay person suffering because of homophobia) then there’s no need to alter them. “Correcting” them is a measure of social control that crushes individuality and only attempts to mold people into obedient ~productive~ servants of capitalism. Much of psychiatric medical treatment (not just the diagnoses and therapies themselves) focuses on turning the patient into less of a social “burden”, than on their actual happiness. That’s why you have ADHD and autistic kids being given meds that turn them into zombies and that's been considered a good thing for DECADES. Like, why does the stimming of an autistic person or an “unusual” attachment to stuffed animals as an autistic adult have to be corrected? WHOMST does that harm? Nobody! But it makes allistics uncomfortable because allistics are fucking stupid and can’t mind their God damned business to save their lives like normal people do.

Even non-pharmaceutical treatments for psychiatrized conditions are or can be turned into measures of social control. 

Maybe CBT wasn’t meant to be a tool to control people and shit, but it can be misused as such SO easily! It can go from being therapy to help individuals process inner pain and redirect harmful behaviors in positive ways, to being turned into training someone to react, feel and process abuse and oppression in ways that are convenient to the status quo. 

Don’t get me fucking started on ABA as an inherently oppressive, abusive “treatment” for a psychiatrized condition that does nothing to actually better the lives of autistic people, instead punishing autistic traits, teaching autistic people to painfully repress said traits and ignore their needs, and seeking to appease allistics by prioritizing their convenience and subjective comfort.

Behaviors, emotions, perceptions or traits that on a man or white person would be considered a non-issue or given much more compassionate/less stigmatized diagnoses, are pathologized or given much more stigmatized diagnoses when it comes to female or racialized patients, which reaffirms psychiatry and psychology as subjective tools of social control.

While many of the traits, emotions, perceptions and behaviors of what are considered personality disorders are painful, harmful and real (and thus should be helped, with consent, not hammered down), literal personalities aren’t “ill”. They’re personalities. Pathologizing or medicalizing a fucking personality on itself is ridiculous. It is possible to address those problematic traits/behaviors/etc without saying that a fucking personality is “ill”. So much for “you’re not your disorder”.

What shrinks will deem as hallucinations or delusions can be subjective, and it definitely can be deemed as such out of white-centric cultural bias. Plenty of non-white cultures have considered different perceptions of reality as valid and worthy of respect for centuries, at times related to their sense of spirituality. Not to mention how psychiatry has deemed the real anxieties of oppressed people that they’re being followed, spied on, plotted against and all that, as hallucinations or delusions in order to discredit them.

Many patients are given medication to try to alleviate traits/behaviors/emotions that come from circumstance (poverty, ongoing abuse, trauma, oppression...) instead of addressing the root problems. While I 100% understand using medication as a palliative measure because, bitch, you can’t always fix those problems and you still have a life to live (the same way I take clotiazepam when the insensitivity of the allistics around me causes me sensory overload), this puts the burden of the person’s situation on their own body, as if their body was the essential source of a suffering that comes from outside forces they’re not responsible or in control of. This should ideally be addressed through material change in realities that can be individual (removing the person from an abusive situation, giving economic aid, giving proper treatment to an untreated chronic illness) or social (abolishing white supremacy, the patriarchy, capitalism, etc).

So many times when palliative medical treatments for suffering that comes from circumstances don’t work (BECAUSE THE PATIENT IS STILL TRAPPED IN SAID CIRCUMSTANCES, HELLO?) it’s blamed on a supposed defect of the patient’s body/brain rather than, like... You can give me as many anti-depressants as you want but I’m still gonna be miserable if I’m being abused or suffering from unending physical chronic pain lol. And then, instead of at least having the decency of recognizing the real source of the problem if your shrink can’t realistically fix it, they keep trying more and more different meds on you like you’re a fucking lab rat, keeping on blaming a made up defect you were “born” with. Imagine what that does to a person’s self-image! At least when I loathe my body for the chronic pain, chronic fatigue and more that my chronic illnesses give me, it IS actually true that it’s my body that has a defect that can’t be cured. Why convince a person in suffering due to anything, but especially when it’s due to outside conditions out of their control and your job is fucking supposed to be to help them be happier, that their pain refuses to respond to treatment because their BRAIN is so terribly defective? I don’t wish the hatred I hold for my objectively shitty body on anyone, and causing that to someone when it’s not even true...? Incredible.

Lots of genuine difficulties associated with psychiatric diagnoses are much better helped through accessibility and material considerations, or at least through teaching the patient pragmatic methods to better deal with those, than through pills. But guess what solution shrinks usually give you. Hint: it’s easier for them and they can charge you for it monthly.

Society™ medicalized emotions, bro... WE MEDICALIZED FEELINGS!!! WHAT THE FUCK!!

[rabbitindisguise]

I finished disjointed finally! It was wild watching authors basically bicker over pain management over the text. "Opioids work! Don't rely on stereotypes!! (Bases this on evidence)" "Kale smoothies!! Kale smoothies for everyone!!!! (Totally baseless things contraindicated by MCAS, PT, and sleep specialists) and opioids are the devil" meanwhile, the medical marijuana guy for three chapters is predicably like: "Anyone want some WEED?"

Really makes a guy think thoughts, huh

I did cry a little bit over the chapter that brought up PMDD. I'm so relieved that it's connected to my other shenanigans. There was some dismissal of ADHD and anxiety as possible with EDS but paradoxically, basically everywhere else, people had a diagnosis both. I think a big part doctors fail to notice is that some anxiety symptoms can be clearly not attributed to dysautonomia, like anxious thought spirals without a sense of impending doom. That rules out phobias, panic disorder, and many others.

I dunno, the more I read about EDS the more I relate to people's stories. I hope they give me a fair shot. It would improve my life so much, for serious reasons and non-serious reasons. I'm getting my geneticist appointment scheduled soon, so wish me luck everyone! I'm also seeing a neurologist about migraines/pots and I should get a chronic migraine without aura/chronic cluster headaches/POTS diagnosed after a tilt table and maybe some medication tests and hopefully a bunch of neuropathy testing and scans for my Unusual Eye Business

I have other renewed concerns but that's a problem for Tomorrow Lavender, not Today Lavender

[chronic-confessions]

Confession #5,426

This is a long one, and kind of a rant/vent, but also if anyone has any answers or responses or anything, I’m open to them

I’m worried that I might have dysautonomia, but idk if my gd will believe me because every time I’ve been in my blood pressure has always been good or prehypertensive??

But also, I drink a LOT of caffeine every day, because without it I get a lot more spacey, dizzy, and so many headrushes. I thought they were just part of withdrawal, but when I was put on Ritalin for my ADHD, I was told to stop the caffeine consumption. I managed to get down to abt 50-100 mg/day, but any time I go below that I get dizzy and weak and it feels like my body is so heavy. The longest I lasted without caffeine was a week and a half, but couldn’t stand it.

I also have SUPER tense muscles all the time, issues with breathing and air hunger, and I’m not sure if it’s related, but sometimes it feels like my body switches automatic functions to manual??

Like I’ll be sitting and want to grab a cup, but then my arm feels like I need to consciously move every single muscle to do it. You know when you mime something being heavy, and tense your muscles weirdly and then it’s hard to move them? It’s like that, but switching on without my consent. And also, I get so little feedback from the affected area when it happens. Often if it’s my legs, they’ll just straight up fold under me before I can switch them back ‘on’. It feels so much like I’m faking it, because I can sort of trigger it consciously if I concentrate, but then it’ll happen suddenly when I’m standing or typing and I’ll remember than not every episode is will full, and sometimes they’ll last for minutes or slowly go away over an hour or two. Sometimes I’ll just wake up weak and shakey too, and itll take a few days to resolve itself.

The scariest part is sometimes during an episode, I just. Can’t process speech. It sounds incomprehensible, like I’ll hear the sounds and try to match them to some language, any language, but I can’t. Then, I’ll be fine and realize oh, that’s English they’re talking about the shopping carts. It’s rare, but scary. Maybe once a month or two at most.

I’m still not sure if it counts as sleep paralysis, when it happens as I’m falling asleep,too. I never hallucinate coherent pictures or sounds or anything, and I can usually move my jaw and eyes (I’ll keep them closed/close them so ppl think I’m asleep).

I just don’t know and I’m frustrated and want to scream (which I also can’t do but that’s psychological babey love that PTSD) because these are all symptoms NOT covered by my other physical health issues, autoimmune arthritis and sleep apnea. I’ve never had imaging of my body done other than lumbar xrays, never had brain scans or anything. A nerve conduction study turned up nothing but slightly slower transmission i one nerve in one leg. I feel like I’m faking and trying to get attention but I’m also so scared becuase it feels like my body is failing me and I’ve never been to the ER for anything bc I’m scared of the bills so is it really that bad?????? Am I just being a baby and dealing badly with life????

I just want to know if this is real. If I’m not making these issues up. I want to be able to explain why I sit so much and why I drink so much caffeine and why I’m so sensative to smoke and why I fall into a crouch so much and why I’m so dizzy and just. Be able to TELL people that I’m feeling weak in a specific way, and not worry that I’m faking it for attention.

[mcalhenwrites]

I spoke with a friend earlier about one of my many problems right now.  I’m caught between “I love to write” and “I hate everything I write, most people don’t wanna read it when I do make it, and I can’t help but think it’s pointless.”  I ride out “I love to write” for how long it will last. Ten minutes, maybe a few hours, sometimes even five weeks or so. But then I inevitably collapse. I realize there’s no point, and it gets harder to write, until I’m not able to do it. Eventually, the desire to do what I enjoy doing overrides those feelings, but the cycle continues over and over, and I’m never often happy with my work, I can count on a single hand how many people I’ve accumulated over the years who are excited to actually see me post writing and writing-related information, and I am running out of time to make this work as a career. ...And that feeds into my fears that I will never be independent, that I have no worthwhile skills*, etc etc, and I’m stuck in this abusive home forever. * I’m at this point willing to scream from a mountaintop that if you wanna push crochet as my only worth asset, I am going to hope you get my fibro/ibs/pmle/depression/anxiety/folliculitis (antibiotic-resistant-staph-related)/knee trouble/whatever-this-is-that-is-probably-dysautonomia/whatever-this-is-that’s-likely-ptsd clusterfuck of health issues for a week straight, because I’m tired of playing nice on that front. It hurts to crochet because of my health, it hurts even more that the thing that benefits others but literally harms me is more important than me, a human being. Maybe that makes me nasty, or maybe I’m just trying to convey a truth to people that no one is willing to understand. 

[tenspontaneite]

Paper Cranes Q&A 3

Topics covered: ‘disease’ progression, lots of things related to Sai and metaphysics, spiritually sensitive canon characters, What’s Up With Touya’s Weird Soul, technicalities and things and stuff. 20 questions covered in total.

Spoilers for: Up to end of chapter 22. Maybe some very slight hints of things to come.

When exactly will Hikaru begin feeling effects of his Problem?

Well. Uh. Spoilers? But like I said in the notes, it’s not going to get Very Bad during the timeframe of the story. The reincarnation-AU I’ve been planning is another matter entirely though since it’s set at least 15 years later Also while dysautonomia can lead to tremors, which would make it difficult to play Go, different patients may experience very different symptoms based on which parts of the nervous system are damaged first. So…it’s not guaranteed he wouldn’t be able to play Go. It’s just possible that at some point he’d have bad enough tremors to possibly launch Go stones across the room by accident instead of placing them. Or accidentally majorly mess up the stones surrounding where he placed his. Etc.

 If Sai came back, would be be able to fill up Hikaru’s soul and stop the degeneration?

Well, hypothetically, any possessing spirit could do this. Not just Sai. But it works best between physically similar souls – the more similar they are, the easier they mesh. That’s another reason why Sai’s soul-bits stick around like they do. The lingering emotion and intent isn’t the only thing there. Very dissimilar souls would passively damage each other in such a possession, so even a benevolent possessing spirit would have a hard time not hurting its host.

 Are there other spiritually sensitive canon characters?

Kuwabara is the only one I’d class as actually sensitive enough to be aware, so to speak. But there are others who are….predisposed, let’s say, to being sensitive, and becoming more sensitive. That should be talked about relatively soon in the story. Next few chapters maybe.

 What’s up with Touya’s unusual looking soul?

See the above question. It’s highly relevant. The Touya males certainly aren’t the only ones, either.

 Will Touya find out?

Spoilers!

 Will Yashiro find out?

…Spoilers!

 Why was Nurse Furutani so suspicious?

She is good at noticing Obvious Things, like the tension between Hikaru and Touya, and is watchful for any hint that Touya might commit the cardinal sin of Upsetting A Patient or even Causing A Ruckus. After a while she determines that their discussion is probably okay and leaves.

 Is there a way to heal soul damage in a living human?

Absolutely not. It’s a fundamental property of souls anchored in a true physical body that the soul can’t significantly change in form whilst anchored. This includes growing, healing, or changing ‘shape’. Embodied spirits work differently. Reincarnated major spirits and kami work slightly differently.

 Wouldn’t calling out the grid position only work if Touya was on Hikaru’s side of the board?

Now, I’m no experienced Go player, but considering how frequently people might be required to place moves recited by a speaker (e.g. one person reads from kifu, other person places) I always assumed they defaulted to Black’s side of the board, because that would make sense. If anyone more familiar with this stuff than me knows otherwise, do let me know, and I’ll add it to the minor-edits-list.

 Can humans make donations to Hikaru?

I….well…uh….they could??? If you got someone (Hikaru or a spirit) to rip out a chunk of their soul, yes, yes they could. But 1) human souls are far more viscerally entrenched than disembodied souls and it’s far, far more traumatic to remove parts of them than it is for disembodied spirits, 2) the damage to them would never heal until they were dead, and they’d become a possession target without the advantage of Huge Leftover Energy that Hikaru has, and 3) most human souls are like…small. Bits of them are even smaller. They wouldn’t be very useful donations. They’d last like, a few days. Certainly no longer than a week.

 Is Hikaru going to feel better about the early expiration date when he thinks about how Shuusaku died at 33?

Well…no. No? I mean, in general, ‘x person I never knew had it worse’ is not really consolation for ‘my own situation is downright shitty’. And really, while Torajirou would have been Extremely Screwed if Sai ever left him (over ten years of possession, yikes) his death from disease was unpleasant but relatively quick in comparison. I mean. Degenerative diseases are awful, okay.

Also I’m very fond of the way you worded that. ‘Expiration date’. Hah.

 Is it weird that I want to write fanfic of your fanfic?

You know what, no, I don’t think it is. I’m definitely not biased on the matter, nope. Also at some point I’m going to be writing fanfic of my fanfic, so.

 Is Sai aware, wherever he is?

SPOILERS.

 What does Utagawashi’s usual outfit look like?

Like this. https://media.gettyimages.com/photos/shinto-priests-at-meiji-shrine-during-ceremony-picture-id597589563

Basically very similar to what Sai wears. Also that picture contains the priestly baton things that I’ve mentioned in the story a couple of times.

 Does Hikaru get any foxy qualities from the bits of fox soul he’s using as adhesive?

As Hikaru is a Live Human, his soul cannot undergo any significant form changes. The soul bits are extremely personal but can’t influence the nature of Hikaru’s soul.

 Could it be argued that Hikaru’s aptitude for Go comes from Sai’s soul/energy?

No. I would like to outright, unequivocally word-of-author this: Hikaru’s talent is his own. He is good at Go, and has a talent for it. The end.

What could have plausibly been influenced by Sai is his enthusiasm and enjoyment of Go, but only via the same sort of cross-contamination as seeing a friend of yours be really enthusiastic about something. More intense, because he can directly feel the emotions of Sai on the matter, but same concept. As mentioned before, live human souls are highly resistant to forcible form changes. Modification of interests and talents certainly falls under that.

Also plausible: Sai’s instincts and impulses with regard to the game might have carried over during the active possession, which would have helped him learn faster. It would have been very subtle, though. And the traces remaining now are not nearly cohesive and sapient enough to have that sort of effect.

 Would the Gigantic Spirit Boom Pillar be detectable to exorcists/priests outside of the city?

As a rule, no. Hikaru would feel something like that. Probably Kaminaga too, at this point. Anyone else would have to be very close, as very few living humans are that sensitive to the currents in the spirit layer.

Spirits, though? They live in the spirit layer. I’d say every spirit in Japan and many others further out would have felt the ripples. Any particularly powerful spirit would have felt it on the other side of the globe. Suffice to say, every spirit in Japan knows that Something Big went down, and gossip and word-of-mouth is sufficient for them to know that it was Ancient Demon specifically who went down. There’s...so, so many rumours among spirits, right now.

 Would foxes enjoy soap operas?

Well. Based on individual tastes, I guess? They are generally all quite mischievous by nature and will be far more interested in what they can witness personally or perpetrate personally than in the antics of fictional characters. But that’s subject to individual differences as it is in humans. Some will prefer some types of media to others.

 What will happen to Utagawashi’s shrine now that its aspect of Inari has died? Will a new aspect replace it?

To make a new aspect for that shrine, they’d need to do a ceremony to imbue the shrine with Inari’s essence. So, pretty much, make a new shintai. I think Utagawashi’s chances of making this happen are pretty high, but if he can’t get it done through official channels he’ll probably just team up with an Inari fox to do it himself.

 Do you know that Paper Cranes is the most kudosed Hikago thing on ao3 aside from esama’s multifandom thing?

I check my stats every single day, anon. I am most definitely aware of that. And it’s glorious. You know my thing has approaching twice as many bookmarks as the next closest competitor, right? Like, dude, it’s amazing. You would not believe how often I sit around preening about my story’s stats. And...well, idk, I might be running out of hikago fic readers who haven’t got to my story yet, but if I can get another 1k kudos by the time the story ends I could get genuine first place there. I’m not bothered if not, but it’s definitely something I think about.

[jekabeth]

Things that help me with symptoms or make my life easier... (Dysautonomia)

Heat up chicken noodle soup and drink the liquid while resting on the couch.

Keep ritz crackers on hand for nausea or those random rare times where my stomach actually feels empty. I eat a handful to ease the hunger ache. I also keep bottled water next to couch and bed for times when I can’t get up easily. I don’t mind room temp water.

Buy multiple heating pads and leave them on the couch AND on the bed, so if I’m in a lot of pain, I don’t have to go far for one.

Don’t be afraid to stock up on the things you know you use daily. If you have someone to help you at the store, it will take the stress off if you have your daily needs to last all week. I go through a lot of sprite and I make sure to grab 3 big bottles every weekend when my husband takes us grocery shopping. I’ve also had to learn not to stock up too much on things that don’t stay fresh for longer than a week. So produce, try to only pick 1 or two different things and only get a few of each unless you know for sure you will eat it everyday.

I also use a notebook app to keep a shopping list. I keep the weekly stuff saved so I can just check if we need any refills on supplies and don’t have to think about it.

I use a big dry eraser board in the living room for reminders. I put it next to the tv stand so I won’t miss it. Mostly I have to write “move clothes to dryer” but it works for most reminders.

I have an alarm on my phone to remind me it’s time to think about taking my aleve pm if I want to be asleep before 3 a.m. Another idea might be to add alarms for self care reminders. I’m seriously thinking of adding an alarm for brush teeth. Someone suggested using warm water so it won’t feel so bad for sensitive mouths. Think of something you probably could do but just put it off out of actual laziness and forgetfulness. Try to picture your normal routine and work out a time that an alarm wouldn’t stress you out to take on that task at that time and set that alarm for whatever days of the week you want.

When I’m having a good energy day, I try to get the bigger chores done. Laundry and dishes. Maybe even a shower. Learn what you feel comfortable doing on the not so good days. Save the small stuff for those days.

Be honest. This may sound simple and not relevant but once I was completely honest about how my illness has affected me….knowing my husband knows how I feel about not being able to work, and knowing that he just wants to help and is not frustrated about it…makes the rest so so much easier for me to deal with. Try to keep an open mind as those who stick by you, learn how best to help you. Be open about your feelings and try to be patient with theirs.

Keep a journal for the times in your life you want to look back on. I have a terrible memory and no concept of time. The year I got married, I got this idea because it was a huge time in my life and I was so scared of forgetting it. So I take down dates and events and feelings and thoughts because I know I will never remember those dates or what I was thinking or feeling.

Use baby powder in your hair when it gets greasy and showering is not an option. If you can find a dry shampoo spray that works for you, even better. I prefer baby powder because its cheap and the smell doesn’t bother me.

Try some essential oils. DoTerra is the brand I use. They aren’t cheap but there is an oil called Peace that I use in my diffuser and it helps calm my anxiety and stress and racing thoughts. Frankincense also helps relieve migraines in most of my cases. I use that with Excedrin for extra relief. I also use peppermint oil for nausea.

Make a list of foods you should NOT eat so you don’t forget and buy those. This may sound silly but I keep forgetting certain things upset my stomach and then I’ll buy it and eat it again. Just frustrating!

Use the calendar on your phone for event reminders or appointments. Also, have your insurance card in hand if you are making an appointment at a new doctor’s office.

If you have trouble verbally explaining yourself to a doctor, try typing something up when you are level headed and can collect your thoughts. Then you can read it or just let the doctor keep it. Start this several days before your appointment so you can add things as you think of them.

Find a good concealer makeup product that works for you and use a beauty blender to apply as foundation for the low maintenance days. Also find a lip balm that has a little color that you like.

If you suffer from hemorrhoids, they make Preparation H wipes. Less mess, quick and easy. I also keep some kind of feminine wipes to freshen up between my weekly showers.

Speaking of showers, I use a shower chair. I got mine at Walgreens. Really helps when a shower is necessary and I’m still really tired.

Try smoothies to get something more healthy in you. I got a small blender at Target and buy frozen fruit bag mixes and add sprite to cut the sourness. You are supposed to use juice, but I prefer sprite. Figure out what works for you. It took me months before I could make a smoothie that I could finish. Learn amounts of fruit to liquid ratio. Some add yogurt. Just figure out what you like and what your stomach can handle.

Don’t set goals. This is just my personal opinion from experience. I would tell myself that on Mondays I will do laundry and shower. Tuesdays would be kitchen and bathroom cleaning. Wednesdays would be cook a meal for dinner. I would quickly be unable to follow these and get frustrated and give up doing any of it for weeks. If you have health goals with your doctor, that’s different. You should definitely pursue those as you see fit. I mainly mean non-health related goals. Take care of you, then on the spot decide what you can or can’t get done.

These are some of the ways that help me in one way or another. If I think of more, I’ll make another post! Hope this helps some of yall in some way!

[illness-to-wellness]

Real quick, before I begin…

Shoutout to folks on meds that had unexpected and undesired side effects.

Shoutout to folks who gained weight as a side effect and had to get new clothes.

Shoutout to folks who got worse fatigue and needed to slow things down a bit.

Shoutout to folks who ended up with tremors or shakiness and are embarrassed by it.

Shoutout to people struggling with any side effects, seen and unseen.

Shoutout to all of you who are affected both negatively and positively by your meds. You’re beautiful, despite the side effects. You’re enough. You’re enough. You’re enough.

Links about building body positivity

Body positivity 101

Body-positive mantras

Body positivity tag on my Tumblr and on Pinterest

Cripple punk (disability-specific body positivity)

Fat-positive body positivity bloggers who fight fat-shaming

10 steps toward positive body image

“Jessica’s Daily Affirmation,” a precious YouTube video of a young girl who loves her body and life

Measure of Body Apperception (MBA) Scale and Self-Compassion Scale to help you understand where you score on self-kindness

Eating disorder recovery tips and general chronic physical illness and mental illness recovery tips

Carol Rossetti’s body positivity artwork, like the piece below

Carol Rossetti has amazing cartoon depictions of unexpected victories in body positivity and feminism like this.

Now, onto the promised content. Trigger warnings for weight/size mentions, food and calorie mentions, and before and after-style photos.

Maybe, somewhere in these words, you’ll find something that helps you on your journey to peace with your body, whether it’s riddled with chronic health problems or entirely healthy, because body positivity is hard, no matter who or where you are. This task of learning to have good body image in a body that’s not entirely under my control is a process, and I’m nowhere close to being done. However, I want to share what I’ve been coming to in my mind and in my conversations with my therapist.

I used to joke that my body positivity as someone who lives with multiple debilitating chronic health conditions was being able to say, “I like the way my body looks, just not the way it functions.” However, as I’m learning from some hard-fought experiences recently, this was a truly privileged thing to be able to say. Research confirms that many people with chronic health conditions struggle with body image more than their healthy peers do, and recently, I’ve been fighting with mine. I’ve been thrown for a loop due to the reality of taking medications with weight gain side effects, losing my “I can eat 5 desserts a day and not gain weight” metabolism from my teenage years, and growing into a more mature body after being rail-thin from late elementary school to early college.

[image description: A mirror with a ripped piece of paper that says “WARNING: Reflections in this mirror may be distorted by socially constructed ideas of ‘beauty'”.]

I grew 9 inches in 4th grade, and from there, I spent a decade being thin enough that many people asked me in hushed, yet slightly aggressive tones if I had an eating disorder – especially if they watched me eat, without any hesitation or fear, way over 3,000 calories a day. (My guess is that it was more like 3,500-4,000 on an average day.) No, I just had the metabolism of an athlete, even though I barely exercised.

I finally started growing into my more adult-looking body when I was around 19, and from there, I started gaining weight pretty consistently. I was joyful to no longer have my ribs be visible, and I didn’t mind any of the weight gain. In fact, I barely paid attention to it, except when at doctors’ appointments vitals checks. It was making me look like a mature woman after all of the years when I wished I could look anything like the women in my family, who were… quite differently proportioned than me. Yes, I was growing out of some of my old clothes, but I was growing into some exciting new clothing options that I hadn’t had before, and it wasn’t at a pace that seemed unstopping.

Over the next 3 years, I finally got diagnoses for the chronic physical and mental health problems I was struggling with, and I began to be medicated and start to feel at least somewhat better in many ways. Somewhere along the line, taking these medications, changing my diet, beginning to exercise, and continuing to mature into my adult body, I gained more than 55 pounds from my high school weight and I grew out of all of my clothes. Practically without even noticing, I had grown from a small to a large, a size 4 to a 10 or 12, and into a body that would not be classified anywhere as underweight – even moving from a 6-pack to a bit of visible stomach fat. That’s when I became a bit uncomfortable with my body’s size for the first time in my life (in a higher weight direction, that is; I had been quite uncomfortable with how thin I was when I was younger), and realized I wanted to stop gaining weight (so I could, you know, not grow out of the new wardrobe I’d be buying myself). I came to the reluctant realization that I would need to pay a bit of attention to how much I ate for the first time in my life in order to achieve that. I started feeling weird about my body in a way that I’d never felt weird before because of my personal history with being underweight.

More importantly than the weird feelings I’m having about my body sometimes, I want to share the authentic and even beautiful realizations that this strange time has brought me to.

I’m now realizing that some of the reasons I was so thin in my teenage years likely relate to the kinds of foods that I was eating and the heart problems from dysautonomia that I was beginning to experience. Firstly, when I was diagnosed with fibromyalgia, I was advised to try eliminating gluten and dairy and seeing if that affected my pain. I was shocked by how noticeably it improved it, especially with dairy, and even more so, how much it improved my lifelong stomach issues. It’s likely that I wasn’t getting enough nutrients during my teenage years because food would go through my body too quickly. (Sorry for the TMI. It’s true, though). Now, when I follow my dietary restrictions, I actually digest food well, and my stomach doesn’t hate me (as much). Secondly, I also was likely dehydrated pretty constantly. One of the descriptors for the kind of postural orthostatic tachycardia syndrome (POTS) I have is “hypovolemic,” meaning that I have naturally too-low blood volume. When I went to Mayo Clinic, I was formally diagnosed with POTS and was put on medications to help with water retention and vein constriction to that my autonomic nervous system wouldn’t feel as much a need to pump my heart so hard to get enough oxygenated blood where it needed to be. These medicines have well-known weight gain side effects (as do the psychiatric medications I’m on to help me live as stably as possible with mental health conditions). Due to the POTS medications, I feel so much less light-headed and have less trouble standing, walking, and thinking clearly. When looking at it that way, why would I ever want to go backward? 

I need to keep moving in the direction of health, and that is so much more important than a vague notion of wanting to fit in clothes from earlier in life or have a 6-pack again. I am dedicated to learning to love the shape of a body that feels better than it once did, rather than engage in bad eating habits or avoid medications that help me thrive, whereas before I just lived. This same thought can (and perhaps should be) true for people who are facing similar thoughts about a body that they cannot completely understand, control, or feel like they can accept: For people with chronic pain conditions who choose to use mobility devices to help themselves move more freely and painlessly in the world; with gastrointestinal conditions that caused a need for G-tubes or J-tubes; with large visible scars from surgeries or other reasons (I have a pretty cool one on my back from when I got a pre-melanoma removed); and so on. Though my body is deeply imperfect and filled with health issues, it can do so much, still. It takes me hiking. It brings me on the elliptical. It allows me to stand in front of a crowd and sing or speak. It laughs, cries, and lives wholeheartedly. It types, holds books, and makes music by pressing piano keys. It drives me to school, where I have the privilege of being a full-time grad student of divinity. My body’s functioning is far more important than its appearance, and that is true even though my body’s functioning is far from ideal. Even if my body could do none of these things, it would still be beautiful. My worth is not performative, and even enough I deeply wish that I had a different and better functioning body, its worth is not performative either.

Source.

Y’all, I’m not going to lie: It’s not a perfect process. Every time I tried on a piece of clothing (whether one of my older pieces or a cute possibility in a store) and it didn’t flatter my newer shape, it sucked and it made me feel like I was going backward rather than forward. It’s been really weird to watch what I eat for the first time in order to assure myself that I won’t grow out of the clothes that I just spent a good chunk of change and time (countless hours peering at the clothing racks in Marshalls, TJMaxx, and thrift shops) purchasing. However, my therapist encouraged me to start small, gentle, and broad rather than focusing on calorie counting or anything more intense in the same vein (since I have a tendency to be… kind of intense). The closest thing to calorie counting I decided to do was to look up my basal metabolic rate to see the approximate calories that I can eat, based on my age, height, weight, and activity level, and expect not to gain weight. It was more than I was expecting – score. My therapist also encouraged me to look up appropriate portion sizes (I found this handy wallet-sized guide) so I don’t overeat a ton by accident, and to write a list of some obviously “bad” and easy-to-target eating habits that I have. It doesn’t have to be intense for me to try to achieve the simple goals of not growing out of another set of clothes and continuing to find my way to peace with my body’s functioning and appearance.

These aren’t tricky; these are obvious. No one should be taking a spoon to a tub of frosting, no matter how delicious it may be. (No judgments allowed.)

I hope that these thoughts have been helpful for you in some way. I’m figuring my way out, and maybe you are too.

  Living with Chronic Illnesses and Working Toward Body Positivity Real quick, before I begin... Shoutout to folks on meds that had unexpected and undesired side effects.

[decaying-system]

It's been a while so here's an update on my life if anyone cares at all Mental health: Somewhat deteriorating but not due to any real cause???? Just I feel like shit and tired all the time??????? Maybe that's bc physical stuff idek. Ptsd stuff is getting a bit easier especially now that I've found ppl who relate and know how I feel so that's good. My main thing rn is my physical stuff but seeing as that may be caused by mental stuff it's just confusing and I'm pm blocking it all out best I can at least till I can finish this godforsaken school year Physical health: So turns out chiari may not be the reason behind all my shit. It's probably either mental health caused or it's dysautonomia (did I spell that right? Like POTS) but my dad won't take me to see a cardiologist so that's all fun. Idk there are bad days where I can't really walk and then a few weeks ago I went on a two hour walk without my cane and didn't fall at all. I mean it hurt but not unbearably so idk it makes me feel like I'm faking it all even though I can feel it and know I'm not. My dad still thinks I'm faking it and my mom tries to believe me but I hide pain out of habit so she doesn't really that much. I just want a diagnosis so I can get on meds or whatever and go back to my normal life of only having to miss school once a month-ish due to mental health and not more like once a week

[autstudy]

Welcome to AutStudy!

Hello there, my name is Mattie, I am 19 years old, and I am an autistic undergraduate student. I love studying (maybe because I am studying my special interest), but sometimes it can be difficult to navigate the world of education as an autistic person who also has a bunch of illnesses (social anxiety, phobias and dysautonomia). Actually it is often very difficult, and there aren't many resources that I can use that were made specifically for people like me. Well, I'm going to try and change that! This is my autistic studyblr blog and here I will help you study to your best capacity, as well as document my path through university. Here's what you can expect on this blog: 1) short articles about all things study: from tips and tricks on how to manage executive dysfunction to best stim toys to take to school with you 2) reblogs of posts that I think are relevant and important to this topic 3) updates on my own life, obviously related to studying 4) discussions where other people can contribute their advice and ideas about certain questions 5) submissions from other people who wish to contribute 6) some autistic/neurodivergent/disabled/spoonie specific jokes because hey we all need a break from studying every now and then 7) photos of my messy notes because I can't resist 8) and every now and then some cute posts, like, I don't know, photos of kittens for example because hey, we also need a reason to cheer up So if you are autistic or otherwise neurodivergent/disabled and are currently in school, college, uni, or studying on your own terms, be sure to follow and tell your friends! I'll be here with my pretty pens, twenty empty notebooks and sensory-friendly study snacks. Allons-y!

[makelemonadewithlupus]




Mike & I on vacation with his family in Rhode Island.

Hi! I wanted to pop in and provide a few updates as I've not done so for some time, and there are —excitingly enough—things on which to update.

I have been on a new regimen for over a month now, and it seems to be *doing something* (cue ALL of the emojis). When I look back at my daily symptom chart, and compare it to my calendar, I can see that while no one symptom is more than marginally better, a couple of symptoms are improved enough that when combined I have been able to overall increase my activity level. 

Whereas before a “good” day meant I had about an hour to play with, a “good” day lately could include a few hours of being out of bed and might even mean tomorrow could be a “good” day, too. It’s been really, really nice, guys! 

My sister Cayla and I enjoying live music and those blissful first summer rays at a local beer garden.

Of course this isn’t without compromise. Being more immunocompromised than usual means I get extra walloped by bugs others get over pretty easily. Which is certainly saying something considering lupus does a good job of this on its own. (I hope no one else gets that awful parainfluenza virus that’s going around! It is a doozy, and today is the first day in the last ten that I am really back on my feet.) 

My “not-explained-by-lupus” diagnoses are still separate issues that I have to monitor and tend to as always, and the disease as a whole is hardly better to the extent I still do not know which days will be “good” days, but I’ll take what I can get. 

Mike & I escaped to hang with friends in St. Petersburg, FL in May-- a much needed respite after a long, dreary winter.

The new combination of therapies is not without its side effects, either, of course. One of my weekly injections makes me feel pretty darn hung over, with nausea and malaise for a solid 36 hours. The other makes me achier, dizzier, and SO much itchier that it (and the antihistamine I must take with it) is a bit debilitating for a couple of days post administration. Both shots make my symptoms—particularly the pain— worse at first, and cause pretty intense swelling, too. But once the initial side effects – and the Benadryl/hydroxyzine haze—wear off, I’m left with a body that has a slightly easier time passing as a healthier one. Hurray!

It’s funny to think how low I have set the bar, but I think most with a chronic illness have learned to adjust and temper expectations. Energy becomes a commodity, and we are constantly running through equations for cost effectiveness. Every conscious moment begs the question, “is this a good return on my investment?” as we brush our teeth, consider making a meal, decide whether or not we can see a friend. “Well” moments are prioritized. “Okay” bursts are offered first to Absolutely Have to Get Done. Remaining energy is then used on Moderately Important Needs, and if there is any juice left over (which there rarely ever is) Stuff You Can Survive Without Doing gets some love. 

Mike's littlest nephew and I at the beach.

Most of us can do a lot with very little. It’s a super power, in my opinion. At my last appointment, one of my rheumatologists was telling me how committed he is to getting me feeling better, that his failure to do so up to this point keeps him up at night. I told him I’m not asking for much; a 15% improvement would be awesome. I’ve crunched the numbers and that’s the minimum required in order to ascertain some kind of normalcy. He countered that he’d shoot for 50% (giving my Mama and her severe/not-receptive-to-medication-RA the other 50%), and that he was planning to relieve my dysautonomia symptoms before my cardiology team does— a challenge of sorts, which I found pretty amusing). 

I joke that the only thing I spend money on is medicine and plants. I'm not lying! Gardening, like baking, is good for the s-o-u-l.

I would love to see 50% improvement, but I know better than to expect it. With my current combo, maybe five symptoms are conservatively estimated as 1% better, but 5% is a decent margin as far as the chronically ill are concerned. That number means life is 5% less challenging. I’ll take it! 

Per my physicians’ suggestions I’ll increase one of the meds over the next few doses and see if I notice more relief, and maybe I’ll be able to push that percentage of improvement closer to ten. Time will tell, and my fingers are crossed as I enjoy this newly found and much enjoyed freedom.

In other exciting news, you may have noticed a new feature on this site. A couple of weeks ago I added Match, a tool that takes the tedium out of finding research trials you are eligible for recruiting near you. Today I am excited to share with you that I have partnered with Antidote to help fellow lupies connect with enrolling trials, in the hopes others can find therapies that help them feel 5, 10, 15, 50, or even 100% better, while helping our shared fight for finding a cure for lupus. 

A lupus trial near you is now enrolling.

Currently, Biogen is testing a monoclonal antibody which may control lupus symptoms and/or disease activity— including skin manifestations of the disease. If you are interested in learning more about the trial, or determining if you are eligible, click here. 

As I’ve said before and will continue to say for the rest of eternity, clinical trials aren’t for everyone. How a person goes about caring for themselves post diagnosis is entirely and 100% Their Own Business And No One Else’s. My belief is simply that the best patient and/or advocate is an informed one. I think the trickiest part is that staying up to date is no small feat, particularly when brain fog is a component of your illness, and this is precisely why I am excited to offer as many advocacy shortcuts for others in similar shoes as possible. 

If you're having skin problems related to lupus, you may qualify.

I already post about studies and research results with their respective implications. I love the idea of being some small part of furthering research, especially because it's hard to keep up with all that's going on when lupus is knockin' ya down. 

I can appreciate that others like me want to be involved in research and advocacy for a variety of reasons, but lack the access to do so because of their disease. That’s a real and often insurmountable hurtle. My hope is endeavors like this one help fold the map and make the distance between You and You Feeling A Little Better that much shorter. Because while hope may be an entity in short supply for the chronically ill, it’s important we never completely lose the ability to dream. 

from Blogger http://ift.tt/2wNIVBw via IFTTT

[chronicillnesssucks]

Any POTS/dysautonomia friends have an opinion?

Bit of a long read because it needs some background info, but dysautonomia/POTS people, any opinions? Every day for the past two weeks or so, my heart rate has constantly been around 100 bpm, with periods of time throughout the day where it starts pounding and jumps up to around 120. Even if I'm just laying in bed and I've been perfectly still and relaxed for hours, it's still at a consistent 100, never any lower. My normal pulse usually sits around 80, so having my pulse be this high has made me exhausted, feeling shaky, out of breathe, and my chest feels heavy sometimes, and also the past 2 or 3 days I've had a sharp pain off and on right above my left breast, and on my rib cage right next to it. I haven't been diagnosed with POTS or any other form of dysautonomia, but my mom does have POTS, which she developed 4 or 5 years ago after having bronchitis. I had this same sharp pain about 2 years ago, but at that time it felt a lot worse and it lasted for a few months, plus I was also having the high pulse (but not as consistently as it is now) and noticed that it got higher when I would go up stairs, lift my arms above my head, etc. I got an appointment with my mom's cardiologist, who I was sure was going to tell me I had POTS, especially since he knew my mom and knew she had it (even though he didn't diagnose her, a pulmonologist did). But he basically brushed me off and told me there was no heart issue at all and said it was just a musculoskeletal pain in my chest and to go to a chiropractor. Eventually a few weeks after that the pain went away and my heart rate went back to normal and I never thought about it again until now. Now, 5 or 6 years ago, before my mom had POTS and we were trying to figure out what was wrong with me when I first got sick, I had symptoms of my heart racing, feeling weak and shaky, etc., but I wasn't eating a lot because I was also having GI issues, and then I got diagnosed with gastroparesis. Started a few different things to get that under control, and once I started eating more again, those other symptoms pretty much went away for the most part, so I assumed they were all just from not eating enough. But back then I had two EKGs, saw the same cardiologist 2 or 3 times, had lots of bloodwork, etc., and nothing was ever found that was wrong, so again once I got my GP diagnosis, I just assumed it was all related to that.  But once my mom got diagnosed and I found out what POTS was, I started to think about it and realized maybe that's what I had. And then off and on throughout the past few years, whenever I was having a bad day and felt like I had a high pulse or was just super tired, I would do the "poor man's tilt table" test, but my pulse was only going up around 20-25 bpm from sitting to standing, and I've read that it has to be at least a 30 bpm change. I also have no issues with my blood pressure, even when I change positions. So when I went to see this cardiologist about the chest pain 2 years ago, I thought okay he'll probably tell me he thinks I have POTS, and that will be what was wrong with me this whole time. So when he told me it was just musculoskeletal pain and then it went away a few weeks after, I just stopped thinking about it, and I haven't had any major issues until these past two weeks. I hate to bring up these symptoms to my family or any doctor because they're all going to tell me it's just anxiety, which happens EVERY time I complain about a new symptom or issue, I've even had a doctor literally laugh out loud in my face because she read my chart after I told her some symptoms I was having and saw that I had anxiety, so obviously duh that was my issue. And especially because I've had a lot of GI issues lately, so they're going to put it down to anxiety about those issues. But I know the difference between what I'm feeling now, and how my anxiety feels, and this isn't just anxiety, but I have no idea what else it could be. Would POTS make my heart rate suddenly shoot up to 100 24/7, for no reason, even when I'm just laying in bed doing absolutely nothing? I have started two medications recently, but not that recently. I've been on Levsin for about 2 1/2 months, and hyoscyamine for about a month and a half, but I haven't had any other side effects to either of those, and I have almost never in my life had a negative side effect from a medication besides being drowsy, so I don't think this could be a side effect from either one of those, especially since I had already been on both for a little while before this started happening.

[madamemcweed-blog]

I am still processing out all of those B vitamins (I have a shitty toxin removal system). Since my GI tract stopped with at least two doses of B vitamins still inside, it's been rough since Sunday. Things are starting to move in my gut, but everything inside is still super swollen. Today I'm incredibly sleepy and my chest hurts really bad, bad enough to interrupt the sleeping some. However, the swelling in my intestines has definitely started to go down a little, so maybe water for a couple days will flush the rest of this bullshit out. If my chest still hurts like this by Monday, I guess I'll go to urgent care to see what they say. I've experienced this pain before and I'm not having any major rhythm irregularities, so I don't think it's actually my heart. I don't really know. I'm just tired of going to a (insert medical professional type here) and being told there is nothing wrong. Obviously something is wrong, I dragged my ass here, you just don't know how to find it. (They have limited tests at their disposal and are only focused on correcting immediate death related issues.) On a related rant, are there home ekg like machines available for purchase?? That's 90% of the reason is go to the ER, so if I can verify normal rhythm, it would save me countless hours. #chestpain #bvitamins #pain #sleep #sideeffects #invisibleillness #gastroparesis #dysautonomia #orthostatichypotension #eds #disability #chronicillness #medicine #california #sb420 #prop215 #girlswhosmokeweed #weedismedicine #legalize #pot #pothead #ganja #mmj #marijuana #high #highsociety #medicalmarijuana #stoner #cannabis #cannabiscommunity

[blippybrain]

Social work internship struggles!

The struggle is OH SO REAL.

I am currently working towards a b.s. in psychology and social work. I was planning on graduating this semester, but there was a problem. . . my internship. Well, maybe it was me. Maybe it was me AND my internship? I don’t know. I’m not totally sure. It certainly was me at least for the largest part: I’ve not learned time-management skills, good self-care routines, organizational skills, or planning skills (I technically have been diagnosed with ADHD, rather recently. I wonder if it is genuine or just a cluster of things that look like it. :/ ). I forget things, assignments, what I was about to do. . . I have anxiety, which has been a struggle, considering the tasks of functioning as a social work intern in an organization. I also have dysautonomia, which causes a host of physical problems for me on a virtually daily basis. It’s hard. I had to drop the internship, and I’ll have to complete it later. I have a lot of personal work to do until then, obviously.

I also wonder if the internship itself was an issue. I was in a nursing home, but my real passion is mental health. I would’ve liked to have been in a mental health setting, or maybe another setting than a nursing home. I thought it might’ve been good though, and during orientation to the nursing home, I decided that it seemed good. The more I think about it now, though, the more it seems to me that, if I’d been in a more interesting setting, then maybe I would’ve gotten into it more and even challenged my anxiety more b/c it would’ve related to something I’m so passionate about. Idk. . . maybe that’s just me trying to make an excuse for myself. I also wonder if I’d had a supervisor who’d had a supervisee before, then maybe I could’ve gotten a little more guidance? I’m not used to independent work. I’ve been at a desk in school or stuck behind a cash register up to this point in my life. I know that I can’t have a supervisor hold my hand through stuff, but, maybe just a little more direction would’ve helped?

What am I supposed to do now?