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cesium-sheep · 1 year

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chapter 6 is closer to being useful than chapter 5, up till the last ~10 pages of the chapter where it dives back into woo-woo bullshit (starting at the header "the big picture approach") it stays pretty on the rails and non-redundant aside from the continued weakness of communication, but both the author and the cited works have a very strong perseverance on positive laboratory tests as necessary for diagnosis. even though they describe biopsy results as generally negative for mcas and only useful for mastocytosis, and when testing a patient population with confirmed diagnosis of mcas the most reliable marker was still present in only 48% of them. plus they hammer on repeatedly about how very very prone almost every test is to false negatives due to poor handling even in patients where it eventually does turn up a positive.

like, if lab markers are that fucking piss poor at predictive power, and there are basically no examples given of false positives, and the differential diagnoses provided as soooo important and scary are all much much much fucking easier to test for and frankly tend to be suspected long before mcas by most clinicians (eg cancer, true IgE allergies) allowing differential diagnosis to be a process of elimination rather than a process of inclusion, which is how it usually fucking works for underresearched and underdiagnosed complex conditions and it's considered completely fucking fine for diagnostic standard when it comes to things like cfs/me and fibro and basically all of psychology, why is everyone insisting that there must be evidence of positive labs??? like, sure, that's super useful for some people who do show elevated labs, but it's a real fuckin problem for huuuuge swaths of patients looking for answers, when they already often also include the criteria of positive response to mcas treatments which, 1, yes can be horrible to use as diagnostic if people can't get most fucking treatment without diagnosis 99% of the time but at least is more accessible than years and years of dragging yourself to the lab mid-flare, and 2, seems to be waaaaay more fucking specific and sensitive than any of the lab tests when it comes to mcas specifically rather than sm. and it also already includes the requirement that it is not better explained by a different diagnosis.

like, no, I'm sorry, I've worked in science, I know how designing criteria is supposed to work, albeit mostly in a psychology context which is apparently more fucking advanced than most medicine, and that lab criteria is dogshit. and the author talks about oh it's so ~controversial~ to diagnose based on suspicious history, process of elimination of differential diagnoses, and response to medication, in absence of positive lab testing, and strongly implies patients also find it controversial, but motherfucker that is an entirely solid diagnostic process!! that is entirely valid from a scientific use of the term valid!!! like goddamn I fucking hate doctors. so goddamn attached to their precious "objective numbers" that half the time don't mean shit.

I will say, to the author's credit, despite being a woo-woo naturopath enthusiast, and getting deeper into that for the final portion of the chapter (starting at the heading "the big picture approach" it's all Highly Suspect from there and I would advise skipping the rest), she does explicitly cast shade on the idea that an allergic reaction can be stopped with meditation. I do feel it's worth pointing out that all the explanations she provides for "secondary mcas" fall into this woo-woo bullshit category, asserting things like psychological traumas and heavy metal exposures are causing the mcas and comorbidities in some way and addressing them will cure it, rather than the mcas causing the sensitivity to these triggers or these not-very-disparate comorbidities and removing triggers will treat it, which seems way more fucking plausible to me. like, we just got done writing a whole phonebook chapter about all the ways mast cells can fuck with us, and you're still assuming that there is something else underlying that dysfunction, rather than that dysfunction underlying the comorbidities? like. no.

we do also get some more mentions of autism, why can they not just fucking leave autism out of this. (as well as schizophrenia again, down syndrome, and "criminal behavior"(?????)) one of the theories lists "poor dream recall" as a symptom which is just absolutely fucking buckwild. for real just skip everything past the "the big picture approach" header if you don't want to scream. I skim-read it anyway just to verify it was trash, but you really shouldn't. like, I think the basic concept of holistic medicine has serious merit, this specialty siloing that happens in mainstream medicine now is clearly Really Bad And Dumb, but the vast majority of ~holistic approaches~ are. complete nonsense to a dangerous degree.

altho the more I read about anaphylaxis in the context of mcas rather than like, IgE food allergies, the more I'm like "oh. huh. hm. well. not much to be done about that." because mm. well. sure sounds like the more acute freight train flares are uh. probably anaphylactic. but I usually just sit on the floor and ride them out. which is uh. definitely not how one is supposed to respond to anaphylaxis. and I definitely should've been prescribed an epi pen the moment a doctor was like "yeah sure I'll believe mcas" so I guess if she ever comes back to work I should probably educate her on that. my doctors say I'm a valuable learning experience 🙃

#mast cells united #long post #ask to tag

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surveys-at-your-service · 5 years

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Survey #238

“crimson calligraphy written on the trees, creature from the grave, headless and hellbent for me.”

Have you ever played golf? Like, mini-golf. Is there a lake near your house? No, but there's two small ponds down the road. Have you ever made your own pizza or pasta dough? No. Have you ever watched an entire season of a tv show in one day? Uhhhhh how long are the first few seasons of Supernatural? Because Jason and I fucking binged it, and I honestly think that's partially the reason I don't even enjoy TV anymore. Like I liked the show, but jfc it became torture at some point. Not his fault at all, I just never pointed it out. BUT ANYWAY, it's definitely possible we did. What did you have for dinner tonight (or last night)? A ham and cheese hot pocket. Do your parents do things that ‘embarrass’ you? This is so mean, but my mom makes the cringiest jokes and such imo that gives me mad secondhand embarrassment. Do you like any Bon Jovi songs? Yeah, a decent handful. Who was the last person you were in a car with? Mom. Do you give people second chances? Ha, more than "second." How’re things between you and your most recent ex? We're totally great. Really as if we didn't even break up, considering I mean... nothing emotionally has changed. We just know that being together right now isn't the wise decision. It's frustrating as hell, though. We've already established we're not going to "wait" for each other, but neither of us are actively looking for a new partner, either. I want her, and from what I can tell, she wants me, too. We kinda just... don't talk about how unfair it all is anymore because we both get too upset. I was even supposed to go up there with her and her fam for her birthday and Christmas, but that's changed because she and I agree it's too soon after splitting, making it only more difficult to be around each other. We'd want to cuddle and kiss and such by instinct, so we're trying to wait until the wound isn't as fresh. Though honestly, I don't know how visiting period would go consider as said, there has been zero change in romantic attraction. Ugh yeah I just hope she figures out what she wants and all and we can get back together. Have you been to a wedding this year? No. I'm going to my half-sister's next year, though. Are you an aunt or uncle? Yes, and another niece is on her way. :') Do you expect to be married in the next two years? Probably not. What season is your birthday in? Winter. Have you ever been hunting? Fuck that shit. How often do you walk around barefoot? Always in my own house + in other houses if I'm allowed to take my shoes off. When you eat take-out, do you just eat it out of the containers provided? Usually, but it does depend on what food it is. Ex., those little boxes that have rice in them from Chinese places? I'm using a bowl. From the container is just messy. Would you need to sleep with someone before considering marrying them? Nah. Do you carry condoms? No. Would you date someone who has a hearing aid? ... Yes...? "No" is just... so rude?? Like that is something the person absolutely cannot help, nor is it a HUGE thing. It's just a hearing aid, dude. How organized are the files on your computer? Pretty decent. Folders and such. Could be better still, probably. Have you ever been to a strip club? Nah, not my scene. Have you ever brought home a stray animal? Pleeeeenty of cats. Are you physically strong? No, especially not my legs. I've got a newborn fawn's legs, jc. Still working on building the muscle back up. Would you date someone with braces? Oh my god, fuck off. Yes I would. I was the person with braces dating someone without them, so 1.) I obviously can't say shit, 2.) they're taking care of their goddamn teeth, and 3.) I dunno, wearing braces has no goddamn impact on personality???????????? Does scuba diving interest you? Not to an incredible degree, but it'd be cool. Would you ever ask your parents for relationship advice? Maybe for certain topics. Do you think people look up to you? Y'know that "oh no hunty WHAT is u doin" meme??? That's me if someone does. How often do you have trouble sleeping at night? *blinking* There are people who don't??????? Do you blush easily? Ohhhhhh yes. Do you get angry at yourself or at others more often? Hm. Not sure. Can you name five current world leaders? AHAHA nope. How many times have you had the flu? Zero. Do you think imagination is valuable? Oh hell yes. We would be NOWHERE CLOSE to where we are as animals without it. Who or what are you most impatient with? I don't know. When was the last time you mowed a lawn? Never. Have you seen all of the Star Wars films? No; seen only the first three with a friend and saw zero appeal. He didn't either. How about all of the Harry Potter ones, so far? I haven't even seen one. Jason and I started the first one together but. Paid way more attention to each other than the movie lmfao. What part of the newspaper do you typically enjoy reading? None. I collect my school's papers now though 'cuz I'm the photographer for it. :') Have you ever made a website, even a simple one? Four that I remember. The ancient and now-defunct ones were back when I think this site called Wetpaint was a host for simple sites, and a lot of us RPers posted our mob info and stuff there. I had one for Talons, one for Connrads. Ha, out of curiosity, I think I looked for them not all too long ago since I never actually deleted them, but I think the site itself was re-purposed. NOW, I have a Wix site for my photography, and then Kalahari Manor is a ProBoards-hosted site. Which was better: your childhood or your teen years? Jfc, childhood. Teen years were a chaotic and rancid cesspit in terms of mental health. What was your reaction to your first time falling in love? I truly imagine that realizing I was *in love* with Jason surpassed what a high probably feels like lmao. What does it take for someone to win your heart? I'm actually putting thought into this one and I think what appeals to me in a person most is just being friendly with a good sense of humor and obvious, shameless concern for others. AND JFC, HAVE EMOTION. Don't be a brick wall with me. Lacking an emotional side, positive or negative, is such a turn-off to me. I'm not attracted to robots. Being a gentle person is important, and for me personally, you need to actually act like you're into me. Not just between us. Do not make me a secret. AND BE CREATIVE AND WEIRD AND FRESH!!!!!!!!!!! There's nothing wrong with more "vanilla" people, but just for me myself, I need someone who stands out for some good reason. lol okay this answer's actually getting kinda long, I'll stop. There's a number of ways. What is one thing you would rather be doing? Ha ha yo real talk, Sara and I are getting all emotional and deep into our relationship, platonic or romantic, and I want me and her in her bed right now tearing each other up alsdkjfla;kwejre I love her a lot ok. When was the last time you changed your mind about something? OKAY SO I started a new birth control, right? It. Sent. Me. BACK. With my PTSD. How? Idfk, but I was suddenly obsessing over Him again, badly. I stopped that shit, and wha'd'ya know, two days later, I'm like "lol wtf I don't want him why did that just happen hunty was u ok????????". SO YEAH, that was a trip. Do you know anyone with a lisp? I'm not sure. Possibly. How much weight can you lift at once? No clue. Not a lot. Do you ask guys out, or wait for them to ask you out? I've never asked a guy out, but I wouldn't say I wouldn't. Do you like the last person who showed interest in you? I love her. Describe the last person you stared at? I have no idea. Do you like dating one person at a time, or multiple people? I'm personally monogamous. Have your experiences made you more or less sympathetic to others? MORE. Do you find smoking unattractive? I do. Have your parents ever searched your personal belongings? Mom has. Where did you get your last bruise from? ... Well. This is uh. Awkward. Tying into when I was on that medicine that made my libido fucking uncontrollable (thank the fucking lord I'm back to normal), my breasts are lookin rough, sister. Are you looking forward to anything? Nothing in the VERY near future, I think. A bit further off, Christmas. I can't wait to see the kids so excited again, and for once, we come together as a true family. Plus my #1 wish is to have my Mark tattoo improved at an amazing parlor, and I'm pretty sure that'll be happening, just obvs. not on Christmas Day itself. I'll just be fuckin STOKED when I *know* it's happening. Do you have a good relationship with your parents? Yes. How much money did you spend today? $1.25 for something from the vending machine. I didn't have breakfast, so I was really hungry. When you’re bored in class, what do you usually do? Try to not doze off. If we're not doing anything, then I'll play around with my phone. Have you ever had a song stuck in your head for more than a day? Oh, definitely. Ever walked into the guy’s bathroom? HA as a stupid elementary school with her friends, we sure did during a work day (my mom used to work with special ed kids at school). We thought we were soooo rebellious. How many wives or husbands do you want? One. What happens if you fall in love with your best friend? Ha, did. I still am, and we hope to be back together someday. Has a teacher ever flirted with you? Not that I know of. Thankfully. Is it okay for friends to kiss each other, as friends? It's not my thing, but sure, if it's consenting and both are aware it's platonic. Do your wishes ever get granted in the worst way possible? Probably in some way at some point I don't recall. How do you feel about your naked body? NONONONONONONONONONONONONONONO Have you ever been called obnoxious? I don't think so, anyway. Do you wish you had a bigger family? No. Which friend would you kiss full on the mouth, no questions asked? Sara. Can you do a split or stick your foot up next to your ear? Nope. When was the last time you complained about something? I was venting some mild frustration to Sara earlier tonight. What is your favorite color combination? Favorite is probably pastel orange and light blue. Love it. Then there's pastel pink and purple. Okay pretty much any combination is about the pastels When was the last time you spoke in front of a group? A month or so back when I had to do my Lifeline presentation in FYS. Do you like group projects, or do you prefer to work alone? I strongly prefer working alone. There's no disagreements, compromises, incompetent partners, etc. Have you ever been told you were going to Hell? Yup! (: Indirectly, but. How did you respond? I don't recall, but I wish I did. Who is the most argumentative person you know? She's not in my life anymore partially BECAUSE of that shit. Do you know anyone who is crazy about proper grammar? Yes, but she has OCD as a valid reason. I'm pretty particular about it too to a degree. Who was the last person to make you feel special? Oh my gosh, my therapist told me she was so proud of me and the progress I was making that I just entirely lit up and became a total beaming ball of giggles and "thank you"s. Would you feel funny if you kissed somebody of the same sex? No, I'm bi. If your best friend grabs your hand, what do you automatically do? Squeeze it. What’s something you can cook or bake like a pro? Cheesy and spicy scrambled eggs, man. Also known as the only thing I can properly cook lmao. Do you tend to flirt a lot, even when the person isn’t single? Fuck no, if they're not single. I'll flirt with my s/o when I see it appropriate or relevant, and in a case where we're both single, I'd be very subtle about it because shy. What’s something that you think is really cute? Off the very top of my head, the Ewoks from Star Wars, oh my fucking god. They were the only thing I enjoyed in the movies. What’s a pretty bird? I mean... pretty much all of them. BUT, can we take a moment to appreciate the bearded vulture? like???? they're fucking BADASS???????????? Besides sleeping, what do you do in bed? Almost... everything. It's the reason I endured/am still recovering from muscle atrophy in my legs. Have you ever hacked into somebody’s account? Playfully, back when that was a thing for friends to do and post lovey-dovey stuff about them everywhere. Megan and I, and I believe Mini and I as well, did it to each other. Possibly more. Is having to pee really badly worse than being really thirsty? Oh hell yes it is. The former can get to a point of hurting. Have you ever touched a Qu'ran? No. Do you love animals more than most? Oh definitely. Why do you eat fast food? It's easy to grab when on the run, and Mom has almost zero time to cook. Then we both have school. Most often I just warm things up in the microwave or grab something substantial enough in the fridge. Is there always going to be that one person you and a friend makes fun of? I guess you could say indirectly, yes. Just something she said in a certain way became an inside joke. Her as a person, no, I wouldn't do that. What is a bad habit of yours that you’re actually trying to fix? Having terrible eye contact. I have a very hard time maintaining it, but I've been trying to keep that weakness in mind when talking to people. Do you write out your feelings? That's one reason why I take these surveys, yes. Do you have bills to pay yet? It's embarrassing that I don't. Not saying like, I want to pay bills, what madman would, but I do want to feel more like a proper, independent adult. Will you be changing your hair any time soon? Not the style, but one thing I'm asking for Christmas is a professional to dye my hair silver. I say pro because my hair does NOT hold color, and because of the bleach needed, Mom's concerned I'll damage my hair if I put my trust into anyone less qualified. Does your mom have a celebrity look-alike? I don't think so, but she looks UNCANNILY like her firstborn daughter. It is SCARY. Is there something you wish you could learn to do? There's loads of stuff. Probably above all, cook. Or stop procrastinating. If you could be amazing at ONE thing, what would it be? Drawing precisely what I see in my head. Because of how important they are to me, I would pay BIG FUCKING BUCKS to get how my 'kats look onto paper. What do you wish people would pay you to do? Complain about my weight. :^) I'd be able to just pay for surgery to fix that within a day. Do you take good pictures? I personally think I do. I mean I wanna be a professional photographer. How would one go about impressing you? It depends on the subject and difficulty of whatever. What probably impresses me most would be someone maintaining a mature, peaceful attitude when there is reason to act otherwise. Self-control, that's it. Do you automatically apologize if you walk into somebody? Duh? Tell me a memory of this summer: It was fucking scorching and I hated every minute of it. What’s something that you don’t need, but really want? Hmmmm. OH, HELL YES. IF I had the proper body to even remotely pull them off, I. Would wear. NOTHING. But corsets. Jesus FUCKING Christ they are so hot. What do you draw more than anything else? Just about all I draw is meerkats. What’s the most favorite class you’ve ever had? The Digital Photography course I took in high school. Or Art Honors my junior year. I really enjoyed the stuff I made. For each person you’ve kissed, describe your feelings in one word: Jason: melancholy; Tyler: dramatic; Girt(?): loyal; Sara: ideal. How do you react when you trip or stumble? Gasp and carry on. If it was a more serious trip, I look around at who saw. Are you good at “biting your tongue”? NO. Why do you love the one you do? She's been there for me without fail, has undying faith in me, supports me through everything, is honest, she's funny and very unique, her adoration for animals shows a great level of compassion, she trusts me so much despite her history, she stands extremely firmly for what she sees as right and wrong... okay I can honestly write an essay on why I love her. Would you rather get [another] tattoo or piercing? GIMME!!!!!!!!!!!!!!1 THE TATTOO!!!!!!!!!!!!!!1111111111111111111 Do you have long or short legs? I'd say they're normal, idk. When do you listen to Nickelback? *shrugs* When I wanna? Would you rather make the first move, or your crush? Them. I'm shy.

#survey #quiz #questions #random #bored

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