#just a sick bitch who knows too much about mast cells

[thebibliosphere]

did you get hpv vaccines? theres /some/ evidence that it can be the trigger for pots in some (obv very few) people, i think it might have been for me so i have mixed feelings about it

I did not, but I want to get it done and will be doing so once I get my other more pressing vaccines out of the way because the benefit of preventing cervical cancer are worth it to me as someone with a family history of that cancer.

I’m going to say something that will likely get a lot of people’s backs up: but I do believe people when they say vaccines cause them to develop health issues like dysautonomia or MCAS.

How can I not when every time I get a vaccine it has to be done under strict observation with an epi pen at the ready?

But:

I also believe, based on my own research, talking to countless people with similar issues online and discussions with my own specialists, that those individuals were pre-disposed to such issues and if it hadn’t been the vaccine that got them, then it would have been something else that eventually caused the symptoms to develop.

There is an under-explored genetic factor to mast cell dysfunction and mast cells can play a role in autonomic failure conditions, like POTS, regardless of whether the person suffers the classic allergic reactions more commonly associated with mast cell dysfunction.

Sometimes, something triggers the immune system the wrong way and that’s the catalyst.

It could be a vaccine, or an otc medication safe enough to give to infants. Sometimes it’s a virus or a bacterial infection. Sometimes you’ll just be chugging along and your genetics decide to hit you with a steel chair. It’s unfortunately just your luck of the draw.

And I understand people get validly frustrated and angry when vaccines do this to them, because they’re doing the right thing to protect themselves. It’s just deeply unfortunate that they had this type of immune response that is poorly understood and unpredictable. My hope is that as mast cell research grows, solutions will be found to help prevent it or at least mediate it.

Personally, in the meantime, I’ll take the risk of the vaccine over what the virus might do to me, but that’s because I’ve seen what “mild” viruses can do to people when their immune system is already primed to self-destruct.

I’ve got friends who caught common colds and haven’t left their beds in years because it caused them to develop ME/CFS so severe they never bounced back. It’s wild all the ways the human body can break without killing us.

If the vaccine was the cause of your POTS, I’m sorry that happened to you. It’s shit when it happens. Hopefully it’s some small solace knowing you’re better protected from HPV and the complications that can arise from it, though I wouldn’t blame you if you’re not there yet. Grieving a chronic and lifelong condition like POTS is a shitty, difficult thing. I wish none of us had to go through it.

[cesium-sheep]

overall I think this is the most useful/interesting chapter of the whole book, but chapter 9, despite being focused on traditional mainstream medicine, is unfortunately still mired in much of the gunk from chapter 8, at least in the more narrative portions like the introduction. she seems to have a fundamental misunderstanding of things like genetically-linked illness and learned helplessness, making a wild and ridiculous assumption that patients finding out their illness is genetically linked will just give up and settle for being sick forever instead of pursuing treatment??? there also seems to be a tragic conflation between triggers and causes in terms of her whole "root cause" brouhaha, which also persists through the intro.

also just kind of. a strange fundamental misunderstanding of the disease as a whole? saying that mast cell stabilizers are a symptom-targeted band-aid solution, which uh. no, they aren't. there is absolutely an issue of symptom-targeted band-aid solutions for mcas patients, especially pre-diagnosis, but stabilizing the mast cells is the root cause. you fucking weirdo. if the mast cells are stable they're less volatile to external influence and I can fucking exist in the normal world instead of having to move to an organic non-gmo cotton tent in a crunchy hippie desert commune. (it really grates on me.)

the advice to doctors speaking with newly-diagnosed patients to "consider a temporary symptom log" is absolutely buckwild too, most of us have been keeping symptom logs for years because that's the only real way to get diagnosed in the first place. she also recommends "consider ways to assist the body in detoxification. epsom salt baths, sweating, and colonics may be useful" which, fucking yikes. no. do not do that to an already volatilely ill person. like an epsom salt bath is fine but not really doing that much, but a colonic?? no. do not. actually almost all the suggestions in the "tips for the newly diagnosed" section are. extremely patronizing.

once you make it through the first two sections of bullshit there's some more actually useful information though, starting with the header "mainstream medications for mcas treatment". lists of categories and some of the medications within them and a rough sequence in which to trial them. then an unfortunate perseverance on "you may make ONE change-- make one change-- ONE CHANGE" like bitch we know, this is very normal procedure. good fucking christ. "pill organizers can be useful" oh my god. no fucking shit. get this girl a fucking nobel prize.

-sigh- I suppose it is helpful to have this information written out explicitly so that maybe some folks will be fortunate enough to not have to learn it all on the fly, even if it feels redundant and patronizing to me.

although it includes a depressing fun fact that a 2016 review documented only 3 medications studied in patients with MCAS. that's the same year I first got Really sick :)

I also notice that much like sometimes she gives quantitative data and sometimes she gives "roughly a third", sometimes she specifies the name of and directly quotes the researcher while others she just says "some experts suggest" so I gotta go to the fucking appendix to check whether it's the ones that are generally sound or the woo-woo naturopaths if it sounds a little suspect (eg abstaining from grain and dairy when trialing new medications, which actually was from the scientists who have said some intelligent shit).

there is also direct discussion of medical neglect in this chapter, most notably in the "flare-up medication considerations" section. fair warning.

the way studies suggesting negative long-term side effects of some medications are presented feels a bit like scaremongering, especially given the overall weakness of the scicomm and the previous instances of seeming against long-term (pharmaceutical) medication, so probably be prepared for that too. although to her credit when she's talking about cbd (in the pharmacological section rather than the naturopathy chapter? along with vitamin c but all the other vitamins are in the naturopathy chapter?) she says it still has the same considerations as any other medication in terms of one change at a time and check for interactions and stuff.

would've loved to see a chart with dosing ranges, especially since they only get numbers sporadically, but I guess no one wants to commit to that directly.

[piracytheorist]

Happy Whumpmas (੭*ˊᵕˋ)੭*🎅⛄❄️!!! You have just been snowballed by a secret whumper. Help to keep the snowball fight going by anonymously sending this to five other whumpers with a whump-related question of your choice: What will you do if you could do a 25episode show of Killian's whumpy adventures?(you can give titles for the ep if you feel inspired ;p )

Okay… how far am I actually allowed to take it?

I actually have an idea for a MC that’s continuously whumpy from various aspects and could last 25 chapters but a) it’s heavy, b) an AU and c) I don’t wanna give out spoilers. So I’m gonna come up with something right now, for canon Killian Jones.

So. Exploring some of his whumpy backstory :)

Some time when he was in servitude. I headcanon that Killian was about 17 when he escaped it (nevermind that the show did a horrible job at depicting that, but lbr how many years would he have to work in such horrible conditions to pay off half a fucking rowboat) so everything will depend on how much you’re okay with whumping a teenager. Yes, we’re talking about whipping, but also isolation, being denied food, forced to work harder, etc etc. Maybe as an extra, the time when he gets that wound that forms into his cheek scar.

His first punishment while in the Navy, where he realizes it’s not all what Liam had looked up to. Maybe, in some ways, it felt worse than when they were servants. And then the first thoughts of rebellion start coming in; aren’t they, technically, servants, still? They traded one servitude for another when they could have been free… but he stops himself. He needs Liam and looks up to him so much he doesn’t dare defy this now. If Liam thought it was needed, then he’d endure it - after all, he had managed to destroy their first chance at freedom. He deserves it. Hello self-loathing my old friend. So he wraps his arms around himself, trying to sleep and ignore the pain at his back.

A day where they’ve attacked an enemy ship and he gets pretty well whumped. I’ve actually written that already (cw: blood)

The first time he gets punished for going rogue. It’s heavy shit. The navy ship after him kills half his men, takes the rest as prisoners, whips Killian in front of them, then leaves him as is tied to the mast for the rest of the journey (idk how realistic that is based on, well, his wounds, and actual tactics of navy forces. anyways). 

Continuing from the previous part, they reach port, Killian and his crew are to be hanged. Killian is weakened from his wounds, but that doesn’t stop some guards from entering his cell and beating him in front of his remaining crew. A bit before the time for their execution, they manage to escape, dragging Killian with them. A long, painful time of trying to fight his infection occurs, but he’s a tough nut ain’t he.

It’s pretty similar to number 5 but I’ve already written it so.

Milah has joined his crew. I also have this headcanon that they were first friends with benefits, then friends with benefits with awkward obvious feelings between them but no-one would say anything. During that time, they attack a navy ship and Killian gets pretty badly injured. Milah takes care of him, like maybe a bit too much, and doesn’t leave his side all night. I mean, they were already doing that, but staying with him as he lies in bed injured and helpless, well… 

AnotherOneBitesTheDust.mp3 Milah is dead and Killian is battling infection on his freshly severed wrist. I know there are writers who have written or discussed about that part, and canon is a bit wonky if I’m honest, like it should’ve taken a LOT of time for it to heal… but whatever it’s fictional and I do shit as I like. A lot of pain, a lot of fever, a lot of nightmares leading to a lot of sleeplessness, only to lead to…

Peter Pan’s antics, rated M.

The Last Time Killian Didn’t Listen to Peter Pan. I don’t know what it was, but it must have been pretty bad. Maybe rated M too.

Having left Neverland for good, waking up with a horrible hangover and his chin hurting like a bitch. He definitely doesn’t understand what Smee is talking about when he says he came back with a blonde wench last night. 

In the 28 “frozen” years in Cora’s bubble, he oversteps his boundaries, reading one of her spell books out of boredom. Cora ties him to a pole overnight, during a rainstorm.

There are some quite interesting thoughts he could have had while beaten up, hit by a car, and chained to a hospital bed. Occasionaly mentions of him being in pain, but also a lot of angst realizing “completing” his revenge isn’t feeling any fulfilling at all, maybe it was all for nothing, all the pain he’d caused to others and himself trying to achieve it…Fuck it, no, he’ll just have to find another way.

The painful journey from the hospital to his ship to find and free Anton the “giant”, then after Cora’s betrayal, the equally painful journey back to his ship to New York City to somehow locating Gold and stabbing him… then losing his goddamn senses.

The slightly less painful but much more humiliating (and annoying) trip back to Storybrooke in Tamara’s truck.

(Why are there so few canon whump opportunities in s3?) Nearly getting drowned in 3x20. Coming out of it must have felt a bit uncomfortable.

Undeniably, the time of Gold taking his heart. Like, the moment it happened. The first night he spent heartless. I doubt he slept at all. The next morning, him worrying, angsting, occasionally getting some squeezes from his ole crocodile.

The time of recovery after getting his heart back. Emma joining him, he’s too tired, he just wants to sleep, he has horrible nightmares but she’s there for him, and it just feels weird, to have someone take care of him in that situation… and he ends up crying in her arms.

I know the next six weeks are supposed to be six weeks of calm for him but come on he’s a magnet for disaster and whump so something, even just a bit light, happening to him. Bonus if there’s some Captain Charming or Captain Book bonding during it.

Okay so, like, the next time I can find and/or insert canon whump to explore is during his time in the Underworld. That’s quite a time jump, but we’re also nearing the end of the list, so yeah. A chapter full of glorious moments of that time :)

The time where he was beaten by the Lost Boys in s6 before Emma found him. Yeah, show, you’re not convincing me. I know she supposedly healed him after he proposed she found him but still lol yeah it deserved some focus.

WISH HOOK COUNTS SO. First time he gets sick, with Alice young and unable to do anything for him. Angst and fear and various sickness tropes, but he gets better.

Right after getting his heart poisoned, he tries to go back up but it gets worse. Eventually he collapses next to the tower base. And it starts raining. Wonderful.

Idk I can certainly imagine a time after that where he got whumped and he was drunk and/or craving for a drink. Maybe he was already a mess and some bandits attacked him? Left him wounded and he had to drag himself to a healer, enduring their judging stares.

Finally, focus on the three times his poisoned heart acted up (in canon), and the one that killed him. But he’s Killian Jones so he comes back to life, naturally. 

[twinker-bell-sparkles]

This is a rant so ye

So gonna be honest I literally hate living where I do. Cuz like I’m chronically ill, however I’m also very young looking so local doctors literally don’t believe me. I have Inappropriate Sinus Tachycardia, Mast Cell Activation Syndrome, and possibly Ehlers-Danlos Syndrome(neurologist thinks I do but he can’t diagnose it cuz not his field). Those are at least the big three. I have to walk with a cane cuz the pain is so bad. Anywho getting off track. The doctors in my city suck. Like I’ve been having issues since I was 13. And the doctors always didn’t believe me. Like bruh. My issues aren’t rare they’re just under-diagnosed.

And don’t get me started on the pity looks or the “are you really disabled?” Or the “you’re too young to be sick” Bitch. Ya know babies can have severe health issues. Anyone at any age can have severe health issues. It’s not just the elderly. or and this one really pisses me off. If they can see I’m struggling to walk or if I’m using a store provided wheelchair/motorized cart and they make annoyed noises as if I’m in their way and there’s clearly room for them to walk around me but they don’t and are right on my ass. One time I was walking and these two service members were right on my ass and would not walk around. So I literally had to move out of the way so they wouldn’t trample me. Like really? I’m walking with a cane guys, just go around me.

Oh and like I quit my job bc the pain was too much to work with. And anytime I see old co-workers they always ask “oh my god what happened” even though I stated several times that I have chronic health issues, like the only people who took me seriously was a friend, one supervisor, and my manager. Like I’m not gonna lie about my health issues. They suck. I didn’t want to deal with this. I sure as hell never wanted to need mobility aids.

Hell I wanted to be a dancer, I wanted to do alternative ballet and dance. Now I’m trying to find what I can do with my limited energy. Like good lord I hate this city.