I made pins of the original Pokemon cartridges! :D
Etsy: https://www.etsy.com/listing/1294647646/pokemon-gameboy-cartridge-pins
I put new batteries in my G1 Sweet Talkin’ pony
#what is that first thing she says???#it sounds like “oh my god” but that can’t possibly be right…
XDDD
She says “Comb my hair! I love you. I’m pretty!”
Oh my cousins had one of these when we were little! Theirs was a different pony I think, but the voice box was the same. I remember the “Comb my hair!” line and thinking the way it’s said just sounds weird, and I also thought the “I’m pretty!” line was funny for being conceited lol
this is probably the dumbest question ever, but if POTS patients on average have ~500ml less blood than people without POTS, why can’t we just, uh, give them more blood? to improve symptoms? I guess high salt/water intake is kind of like trying to give POTS patients more blood in a different sense, but why do they have so little blood in the first place? why can’t we just give everybody a water bottle worth of blood and call it a day
Anonymousgreat question! as you mentioned, one of the first steps in POTS treatment is actually blood volume expansion. for most patients this means a ton of salt and water consumed frequently and quickly, which makes people have more blood. some patients do regular saline IVs. you do not in this case need actual blood transfusions to increase the amount of blood in someone’s body. salt and water is fine.
for why is there so little blood, the autonomic nervous system is like, the things the body is supposed to do on its own, which means anything the body is supposed to regulate can have any number of variations and malfunctions across all different types of dysautonomia. it breaks in a lot of ways very easily. POTS patients have frequent urination which is one part of how the blood volume gets low, so without sustained treatment blood volume just goes back down. this is why most patients are told to not drink alcohol or caffeine, because it makes the body get rid of water that should be used as blood. this is not the only thing at play here but it is a big one!
basically: imagine a balloon that is constantly deflating. that is POTS and some other forms of autonomic orthostatic intolerance, in terms of blood volume. you have to keep pumping it (with water+salt) or else it will just keep deflating. there is no one time fix. the one time fix is discovering a cure for dysautonomia, which we do not have.
hypovolemia is not the only problem in POTS is the thing, even with increased blood volume patients still get headaches, digestive problems, vision problems, joint pain, excessive bleeding, insomnia, presyncope, fatigue, and so much more. more blood helps reduce the impact of blood pooling in the feet and reduces the chance of syncope and presyncope, but does not fix the autonomic nervous system and whatever degree of autoimmunity is involved in any particular person. the part of the body that stops blood from pooling in the feet is an autonomic function that is broken, but it is not the only thing that is broken.
even if the balloon remains inflated, there is still plenty of other stuff that needs fixing. the autonomic nervous system affects every part of the body, and there are dozens of symptoms associated with POTS. most POTS patients also have at least 2+ other chronic conditions. blood volume expansion is just one type of treatment that needs to be done alongside medication and other interventions. very few people get adequate treatment just from blood volume expansion since there are dozens of things that need treating. the autonomic nervous system is truly a castle of twigs
Hypovolemia is SO FRICKIN WEIRD because you’d think doctors would notice on standard blood tests. Like, less blood means less red blood cells, so it should show up as anemia right?? But it doesn’t! I’m guessing here but I think it’s because most fluid tests are “how many parts of Thing 1 are there in this amount of Thing 2” so if your ratio of cells to fluid is normal, the overall lack isn’t going to show up even though you get a lot of the same symptoms. I haven’t been able to find an actual scientific explanation.
All I know is if I put salt in a cup of water with a little water flavoring and knock that back once a day I’m good.
I made Kanto gym badges!
Etsy link: https://www.etsy.com/listing/1301596211/pokemon-kanto-gym-badge-pins
recommend me your favorite youtubers! I like a good entertainment and also edutainment. any topic. recently I discovered project farm, a testing channel; and brutalmoose, someone whose every video is designed like a youtube poop. I have been really big into dougdoug recently, who is a video gamer with great comedic timing. also obligatory I watch defunctland. also how to cook that, especially in raising awareness of dangerous crafts. enormous respect!
who do you watch and why? lay it on me!
I always tell people about Stephen and Mal Georg. Stephen vlogs and plays video games, and Mal has a channel where she paints beautiful images of video game scenes. Stephen has multiple channels because of the way YouTube’s algorithm works (short content has to be separate from long content like stream vods) so I’ve just linked to the main one. Stephen and Mal are known for being particularly wholesome, and their community is too. Things also get silly most of the time, such as this infamous incident trying to catch a Dragonair:
Meanwhile on Mal’s channel, she posts both timelapses of her paintings as well as longer form videos where she talks about the techniques and inspiration. She’s often called the Bob Ross of video games.
And now for something else entirely: Kiwami Japan makes knives out of literally anything. Videos are fascinating to watch for all kinds of reasons, including wondering why this person has so many advanced scientific tools.
Another fun one, NerdECrafter does all kinds of things from crafting to testing products, with her own unique flare. I especially enjoy the dynamic between her and her sister Sika.
is baking gelatin actually the exact same thing as those fancy collagen jugs or is the collagen jug any amount of better
I have been using the Fancy collagen because it helps a whole lot, if gelatin is the exact same about of good stuff then I am up for swapping. but if collagen has benefits over gelatin then I got to stick with the fancy stuff because I need all the help I can get right now.
anyone have any ideas?
As far as I can tell, collagen peptides are mostly just easier to take because it doesn’t gel. I add plain ol Knox gelatin to my soup and it seems to have the same effect for me. I still take the fancy stuff sometimes because it’s easy though. The biggest caveat I can think of though is that cheap gelatin isn’t going to have any certifications like organic, grass-fed, etc so it that matters to you there’s that to consider. Gelatin with those things is about the same price as peptides.
EDIT: Also since gelatin gels, my soup is uhhhh interesting the next day. May I offer you a slice of soup? (It goes back to being liquid when heated, obviously)
Ruuuune, tumblr search is being The Worst and apparently I didn't draft save the post(s) in question:
I need to try and convince my GP to let me try Low Dose Naltrexone, which I know from your posts was like the most hopeful shining star of the DI conference, but I can't remember more specifics than that and I can only find one study of 3 people online with conditions like mine that I can try to cite otherwise. I obviously won't cite your blog, but if I can give more solid details from what came from DI (without my trashfire brain having to watch and try to understand without seizuring) then maybe I can win then over 🥺
the dysautonomia international videos have been removed from the event website, and should be available within a few weeks with transcriptions and potentially slideshows depending on which presenter allowed what. other than that you do not necessarily need a study of your specific diagnoses so much as studies on what actually LDN is, its mechanisms, how safe it is, and how to get it filled. and potentially studies in conditions similar to yours, like seizures as a whole.
I did not write down which specific studies were cited, so I cannot help you to that end
there are 659 results for “low dose naltrexone” on pubmed, but I am not sure which ones were actually decent. the presenter warned about doctors screwing with details to make it look like LDN was pointless or harmful.
as for photosensitivity, if you can handle powerpoints + a feed of a talking head in the corner, then you will probably be able to tolerate the LDN presentation. it mostly is a talking head narrating a slideshow.
instead of finding my notes, I suggest just using your local dysautonomia international group to find a doctor in your specific network that already prescribes LDN. they will be the ones that are most informed about it and can tell you whether or not it might be able to help, regardless of whether or not you have dysautonomia.
If I may butt in, I do a lot of research on stuff for my treatment and have learned some tricks I’d like to share.
First off, PubMed is a great resource because it’s all studies and papers written by scientists; stuff there is good to point your doctors at. However it’s hard to navigate. The trick is to use “advanced search”, type in a keyphrase (such as “low dose naltrexone”) tap the “add” button, and type in another phrase (such as a specific disease) and tap “add” again, then search. It isn’t perfect as you’ll still get some unrelated results, but it will narrow things down a lot!
Secondly, for LDN specifically use LDNscience to help find relevant papers. They’ve collected studies on LDN and categorized them by illness.
Since hydroxychloroquine isn’t doing enough for me and I’d rather not take it past the five year point anyway I’m planning to discuss changing my regimen next time I’m at the rheumy, and before then I’m going to ask my GP for LDN. I’m printing out the abstracts of several PubMed articles to take to both of them. They’re both acquainted with my habit of doing extensive research and taking charge of my own healthcare but I want them on board, so I’m going in well equipped in case they aren’t familiar with LDN, which is likely.
Hey folks!
Just a quick update to let you know that my Seeker wing earrings are available on my Etsy shop along with a few of my older designs! You can order seeker earrings pre-designed (IE these three handsome combinations shown) or design your own custom ones!
https://www.etsy.com/listing/1267604350/rise-up-handmade-seeker-inspired
New pins: Autobot and Decepticon insignia! I think my splattery method of coloring works really well with these.
Etsy: https://www.etsy.com/listing/1283982929/transformers-autobot-and-decepticon
Ko-fi shop: https://ko-fi.com/s/27df0d6262
I have been dumping collagen into random food and it seems to help my joints heal. beginning to understand why so many people are obsessed with eating a god
eating a god could probably heal the autonomic nervous system
I have an undifferentiated autoimmune disease and for reasons unknown to science or me collagen makes me feel a little better. Like we’re not even talking joints or something else semi-logical, my joints aren’t really involved in the disease to begin with. My most prominent symptom is soul-crushing exhaustion and I feel better with collagen than without. The collagen peptides that dissolve easily are too expensive to have all the time though, so I only use that sometimes, the rest of the time I just put a lot of cheap gelatin in my soup. It works just as well, but makes the leftovers look Interesting.
The caterpillar fungus is still the strangest thing in my regimen, but at least science understands that that one is anti inflammatory and suppresses the immune system.
