Still trying to figure out what to put in a pinned post that isn't a million pages long. Take three, I guess. (ADHD brain is terrible at being succinct.)
About me: Fandom-focused introduction
AO3: liminalpsych
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@onceandfuturecourt: Arthuriana, Arthurian medieval literature, queer readings of Arthurian medlit
i was reading several articles written by random upper-middle-class people about how Kids These Days are too anxious because their parents don't teach them to "deal with discomfort" and coddle them too much, and This Generation uses "trauma" to refer to any mild discomfort and have broadened the words "abuse" and "bullying" too much et cetera
There is a very abundant supply of such articles and a recent one especially annoyed the hell out of me because it (without actually mentioning the idea of disability) repeatedly alluded to accommodating a kid's sensory issues as example of parents being too permissive or failing to teach kids to tolerate discomfort.
That's bullshit because being in tune with your own needs and discomforts sensory wise is so fucking important for being able to adapt and function in the world.
Like, just an example, I got rid of almost every piece of clothing I own that was polyester or a polyester blend and just doing that dramatically improved my life and gave me more ability to cope with stressors, because I figured out that a lot of my sensory issues with clothes came from bad temperature regulation and the scratchy pills that polyester blends make.
"Discomfort tolerance" has never been super helpful as a concept for me. I have no problem tolerating discomfort in the sense of like, not doing anything about the thing that's hurting me. It's just that if I do it for too long, I can't think straight and process what's happening around me and I eventually become so fatigued it feels like I've got a fever, or else become uncontrollably angry.
I think "discomfort curiosity" is way better concept. You feel uncomfortable. What is the feeling like? Where in your body do you feel it? What does your body urge you to do about it? When does it start? What is it responding to? What about that thing makes you feel that way? Feel it...Experiment with it...Dabble in it...Play with it. I say curiosity because curiosity is so closely related to fear and to some extent, disgust. Curiosity is a frontier zone between repulsion and fascination.
Curiosity is an instinct that encourages us toward unfamiliar things, not away from them. It is part of a large landscape of feelings where away-instincts and toward-instincts are blended together.
I think of the difference between curiosity and fear to be like the difference between solitude and loneliness, or like excitement and apprehension. Or, think of exploring an eerie abandoned place, one of the "liminal spaces" the internet speaks of. The place is "eerie" which is closely related to fear, but the "eerieness" shades into becoming a positive stimulus that our instincts are drawn toward. Liminal spaces, for those of us that enjoy them, are "creepy," but they are also "nice" at the same time. And the "creepiness" is part of the "niceness."
And curiosity is sensitivity. It allows for openness and playfulness toward the unknown.
Many humans' relationships with their own urges and instincts are based on domination and punishment. Tyranny over the body by the mind. The goal is to absorb without shock and endure without indulging the urge to seek relief, to reduce your attunement to your body.
But the ability to be "less controlled by" your body's urges is not positive, because your body is providing information about what your needs are. I find that the ability to make reasoned decisions about how and when and why to persist through something painful requires a deeper attunement to the body's instincts, not a greater ability to ignore them.
Stop treating your bodies like they're animals in a cruel experiment to be shocked with electricity until they lay on the floor whimpering in helplessness. It doesn't help.
Also, any article that suggests people are taking bullying too seriously should be launched into the sun because we don't take it nearly seriously enough i think.
There is a concept of the window of tolerance. It can grow or shrink day to day, with a bigger window allowing you to handle more stuff.
I think sensory discomfort, pain, etc shrinks that window. I noticed with my youngest that, when he started on medication for ADHD, his window grew because he was no longer wrestling with his brain as much.
Allowing our kids to wear the clothes they prefer, like pants, while getting them in materials like linen so they don’t overheat, isn’t coddling. It’s allowing them to then focus on more important things.
ID: A youtube comment with 11 likes by Niceone, it says "I've lived 46 years without knowing this. How nice of life to save some of the best bites for later." End ID.
Normally, people tend to get frustrated, even jokingly, if they miss out on something. This comment was on a song from 1974 and it made me smile quite much. Simply appreciative. Like a dessert after dinner.
A book you hate teaches you more than a book you love. The book you love you absorb passively, it works and you feel it working and you move on. The book you hate you interrogate. Why doesn't this land. Why do i not care. Where did it lose me and why. You become a diagnostician. You start understanding the machinery from the inside by watching it fail. I have learned more about pacing from books with bad pacing than from anything else. Read the ones that frustrate you and take notes.
Something that I get chills about is the fact that the oldest story told made by the oldest civilization opens with "In those days, in those distant days, in those ancient nights."
This confirms that there is a civilization older than the Sumerians that we have yet to find
Some people get existential dread from this
Me? I think it's fucking awesome it shows just how much of this world we have yet to discover and that is just fascinating
@makaeru peer review cos this made me check when the Sumerians happened and I forget how recent history is for every other continent. 7000 - 8000 years ago just isn't that long when you're in Australia, and the amount of detailed history we have access to here is wonderful and should be recognised more internationally
Source (non Aboriginal)
And a quote I picked out from a longer interview with an Aboriginal local elder about the area where he touched on the history
Source (the rest of the interview is really interesting and all transcribed, have a look if you're curious)
This is part of my Ancient Civilizations class that I teach, which does a whole week about Australia and the Torres Strait Islands because I was sick of never seeing them represented in USAmerican history contexts. With the help of @micewithknives and @acearchaeologist I've learned so many incredible things about Australia's past and it's been incredibly rewarding to share them with students.
My favorite fact about Aboriginal oral history is the fact that we pretty recently discovered that the Aboriginal myth of the 7 Sisters, an origin story for the Pleiades star cluster, accurately reflects a point TEN THOUSAND YEARS AGO when two stars in the constellation got close enough together to no longer be distinguishable by the naked eye.
The story? 6 sisters running from something that took their 7th sister.
Every time Sean Astin makes a statement on whether or not Sam and Frodo were indeed gay for each other in lord of the rings he’s always like “well we have to acknowledge that attitudes around sexuality have changed dramatically over the past several decades and since authorial intent is only up to speculation, the story is open to multiple readings, some of which might have different significances for different groups of people also they kiss on the lips because I said so”
Rosie: "This is my husband Sam, and that's his husband, Frodo. Frodo is my husband-in-law. I'm not into him, he's he's a bit too 'elfy' for my taste, but Sam likes him, and that's fine with me. As far as I know, Frodo can't give Sam children, but Frodo looks after ours all the same, so I don't mind sharing Sam if it means another pair of eyes on the wee ones. In all honesty, our family tree is right simple compared to some hobbits. Yes, I'm referrin' to you Lobelia, over there pretendin' you ain't eavesdroppin'. Still bitter you ain't got either of my boys or their house, eh?"
Tbh it's canon that Frodo invited Sam and Rosie to move in to Bag End after their wedding and they all lived there for a couple of years until Frodo went to Valinor, so yeah. Running with it.
And once Rosie dies, Sam says his goodbyes and disappears after him.
what’s funny is people assuming that rosie would somehow be too dim or naive to KNOW that sam loved frodo, instead of looking at a guy who would loyally follow a beloved friend to hell and then help carry him home again, and not be like ‘oh i can’t not fuck that.’
Polyamory, specifically polyandry, would be an interesting solution to the oddball population of the Shire.
The Shire is excellent farming country, with consistently good weather, and only one tough winter in living memory; hobbits like to produce large families; they’re resistant to disease, rarely violent, and encounter few dangers. It is usual for hobbits to produce many children, so that (for example) Bilbo and Frodo are unusual in both being only children, with no siblings, and not having children of their own. All of this should point to a population that increases every generation if not doubling outright. Young people (and their ideologies!) should rapidly outnumber the old with an ever-increasing effect and impact on society. However, the Shire has a surprisingly stable history; it never seems to increase or decrease greatly in population, and the bell curve of age seems… demographically balanced? There certainly isn’t a conflict from rising young bloods challenging the middle-aged reactionaries; there’s no unemployment; there are no housing crises or waves of emigration, or even a tendency for young people leaving home to marry. Meanwhile, not only does the Shire not suffer from internal pressures, but it remains obscure and hardly noticed in global politics.
What makes sense here is that adult hobbits form a loose group. Four parents in a polycule, between them all, may produce four children. All four parents claim to have four children. An outsider would assume this meant the adults had eight children.
Hobbits therefore are not especially fertile or fecund. They simply have large families. Much of their interest in genealogy is due to the complex relationships of blood-kin, hearth-kin, love-kin and pledge-kin, who must all be carefully tracked and measured - not just because you need to make sure that you don’t climb into bed with an un-permitted degree of blood-kin, but to track family alliances and carefully quantify the precise level of thoughtfulness to put into the proper present to gift your father’s lover’s lover (too much implies a degree of intimacy that might upset the polycule.)
Thus, while a hobbit matron may tell a startled dwarf that she has seven sons, she might only have borne five of them herself, and have one hearth-son by her wife, and a pledge-son of her first husband’s. There are between three and four fathers involved at various stages of production, from conception to pledge-duty, but there is debate about the precise number of fathers, as one child was festival-conceived and therefore provisionally pledged to the Brandybucks until more distinctive paternal traits should materialise. It’s expected that four of the sons will be uninterested in women, and their contribution to family life will be in raising hearth-children and pledge-duty. However, this level of detail is normally negotiated later in conversation, as a mutual overture of friendship. So she’s just clear and simple: yes, certainly, she has seven sons. Yes, they’re all hers. Yes, that’s fairly normal - yes, hobbits like big families. How big? That’s really hard to say! Well, about thirteen hobbits live in her house… er, she has forty-three nieces and nephews. Yes! She has nine siblings, that’s correct, but some of them are still babies themselves..
In this way, a bewildered dwarf might assume that hobbits are absurdly fertile, producing an average of seven children per couple, at an absurd pace.
When in fact, with about half of hobbits never bearing biological children, the population of hobbits is pretty much always the same.
Tl:dr, hobbit population works perfectly well, both internally and in the perceptions of outsiders, if the majority of the Shire is gay, they’re all polyamorous, and they all firmly claim to be parents of high numbers of children. Of course Frodo fathered Sam’s kids - he named them! They were pledge-kin but not hearth-kin, as Frodo needed a lot of quiet and stability in the home.
No outsider ever parses hobbit genealogy well enough to understand this except for Gandalf, who never explains anything either.
Since “pledge” kinships are multidimensional and can occur in different directions, hobbits can form - and formalise - family bonds simply because they choose to. Gandalf doesn’t tell anyone that the formation of Thorin’s Company, the Fellowship of the Ring, and Belladonna Took’s Accidental Troop of Mercenaries* are legal formations of pledge-siblings, a hobbit family structure usually claimed to increase social class and prestige (as high numbers of pledge-kin confer distinction on a hobbit, being a sort of popularity vote/endorsement that adds greatly to their social power. Incidentally, this is partly why Bilbo was both controversial and successful in his pledge-claim of Frodo; outsiders mistook his “bachelor” status as someone living outside of heteronormativity, while the Shire was bewildered and increasingly annoyed by his rejection of pledge and hearth commitments. By rights Bilbo had too few pledge-kin, and too little parenting experience, to claim rights to an orphan, especially one from Brandybuck hearth; but conversely, his social status was high enough that his belated bid for his very first pledge-son couldn’t reasonably be denied by anybody.)
In short, all of the hobbits enjoyed achieving even larger families on their adventures, legally and without argument or debate. It’s free real estate. If nobody else is going to sibling these losers, we will. (The condensation of so many entanglements at once also legally made Pippin his own father-in-law.)
Gandalf never explained.
* see the post about the Old Took’s “enchanted diamond cufflinks” that obeyed the wearer’s commands; which were probably, given the general state of things, two lost silmarils recovered by his Remarkable Daughters and gifted to him because things stay small and safe in the shire
Only through Boromir while Boromir was alive! Pippin’s familial claim through Boromir technically dissolved on Boromir’s death, as Denethor hadn’t been privy to it, and those bonds rarely stretch to a stranger when the person in the middle has died before introducing them; although Pippin, who was well-brought-up, perfectly and politely rectified the problem at once by simply swearing himself as Denethor’s pledge-son. but through his blood-cousinship to Frodo, who was older than Boromir, his status as the Took double-primarc (don’t ask) and the proximity-enhanced status-doubling effects of having a five-way cousin in Merry, Pippin was demonstrably higher status as a pledge-sibling and was also his own father-in-law and approved of himself. As such, he would have significantly raised Boromir’s social status and marital prospects in the Shire.
Inheritance follows parent-child pledge as the primary consideration, with matrilineal descent as the secondary. Pippin would have been bewildered to gradually understand that Denethor held his two sons in such odd and different standing :-/ hobbits don’t recognise kingship so it would’ve been very upsetting and disappointing to Pippin to understand how Denethor stood in position of sworn-father to a whole city of people without even being slightly fair to his younger hearth-son. Aragorn is demonstrably much better dad-material and therefore had Pippin’s vote. Pippin, by virtue of being an excellent father-in-law to a spectacularly promising young son-in-law, also considered himself a better candidate for king of Gondor than Denethor, by outranking him in Dad Competence - but was too busy by the time he realized this to point this out .
Ironically, the events in which Pippin realized this made Faramir his own hearth-son - so Pippin won in the end and took a great interest in ceremonially approving of Eowyn. Gandalf never explained
I'm starting to gain insight into why people turn into conspiracy theorists. Some topics are so totally neglected that it looks like they were intentionally and maliciously erased, instead of falling victim to arbitrary lack of interest.
I think it's a vicious cycle; when people don't know something exists, they're not curious about it. Also, people use conceptual categories to think about things, and when a topic falls between or outside of conceptual categories, it can end up totally omitted from our awareness even though it very much exists and is important.
This post is about native bamboo in the United States and the fact that miles-wide tracts of the American Southeast used to be covered in bamboo forests
@icannotgetoverbirds It already is a maddening, bizarre research hole that I have been down for the past few weeks.
Basically, I learned that we have native bamboo, that it once formed an ecosystem called the canebrake that is now critically endangered. The Southeastern USA used to be full of these bamboo thickets that could stretch for miles, but now the bamboo only exists in isolated patches
And THEN.
I realized that there is a little fragment of a canebrake literally in my neighborhood.
HI I AM NOW OBSESSED WITH THIS.
I did not realize the significance until I showed a picture to the ecologist where i work and his reaction was "Whoa! That is BIG."
Apparently extant stands of river cane are mostly just...little sparse thickety patches in forest undergrowth. This patch is about a quarter acre monotypic stand, and about ten years old.
I dive down the Research Hole(tm). Everything new I learn is wilder. Giant river cane mainly reproduces asexually. It only flowers every few decades and the entire clonal colony often dies after it flowers. Seeds often aren't viable.
It's barely been studied enough to determine its ecological significance, but there are five butterfly species and SEVEN moth species dependent on river cane. Many of these should probably be listed as endangered but there's not enough research
There's a species of CRITICALLY ENDANGERED PITCHER PLANT found in canebrakes that only still remains in TWO SPECIFIC COUNTIES IN ALABAMA
Some gardening websites list its height as "over 6 feet" "Over 10 feet" There are living stands that are 30+ feet tall, historical records of it being over 40 feet tall or taller. COLONIAL WRITINGS TALK ABOUT CANES "AS THICK AS A MAN'S THIGH."
The interval between flowering is anyone's guess, and WHY it happens when it does is also anyone's guess. Some say 40-50 years, but there are records of it blooming in as little time as 3-15 years.
It is a miracle plant for filtering pollution. It absorbs 99% of groundwater nitrate contaminants. NINETY NINE PERCENT. It is also so ridiculously useful that it was a staple of Native American material culture everywhere it grew. Baskets! Fishing poles! Beds! Flutes! Mats! Blowguns! Arrows! You name it! You can even eat the young shoots and the seeds.
I took these pictures myself. This stuff in the bottom photo is ten feet tall if it's an inch.
Arundinaria itself is not currently listed as endangered, but I'm growing more and more convinced that it should be. The reports of seeds being usually unviable could suggest very low genetic diversity. You see, it grows in clonal colonies; every cane you see in that photo is probably a clone. The Southern Illinois University research project on it identified 140 individual sites in the surrounding region where it grows.
The question is, are those sites clonal colonies? If so, that's 140 individual PLANTS.
Also, the consistent low estimates of the size Arundinaria gigantea attains (6 feet?? really??) suggests that colonies either aren't living long enough to reach mature size or aren't healthy enough to grow as big as they are supposed to. I doubt we have any clue whatsoever about how its flowers are pollinated. We need to do some research IMMEDIATELY about how much genetic diversity remains in existing populations.
Many years ago I did some (non-academic) research on native canes in the USA because I thought I remembered seeing a bamboo-like something in the wild that I'd been told was native, and I thought it might make a nice landscaping accent. But the sources I found said something like "unlike Asian bamboos, the American equivilant barely reaches the height of a man", and I went "nah, that is exactly the wrong height for anything." But if it gets 10 feet and up, I think there are a lot of people who would be VERY happy to use it as a sight barrier in public and private landscaping, and if it means putting in a bit of a wetland/rain garden, all the better. The lack of a good native equivelant to bamboo is something I have heard numerous people bemoan. Obviously it's very important to protect wild sites and expand those, but if it'd be helpful, I bet it wouldn't be hard to convince landscapers to start new patches too.
For instance, a lot of housing developments, malls, etc. seem to set aside a percentage of their land for semi-wild artificial wetlands (drainage maybe?) planted with natives, and then block the messy view with walls of arbovitae or clump bamboo from asia - perhaps it would be a better option there?
Good Lord. Arundinaria isn't just a better option, it's perfect.
I was in the canebrake near my house again this morning, and river cane is extraordinarily good at completely blocking the view of anything beyond it. It is bushier and leafier than Asian bamboos, and birds like to build nests in it. It would make a fantastic privacy barrier.
The cane near my house is around 10-12 feet tall. This species can reach 30 feet or more, but I think it needs ideal conditions or to be part of a large colony with a robust system of rhizomes or something.
It grows slowly compared to Asian bamboos, and seems to need some shade to establish, so it would take time to become a good barrier, but no worse than those stupid arborvitae.
plants like this were often intentionally cultivated in planter boxes as a form of water filtration and civil engineering by a bunch of indigenous nations.
There's a reason why Native Americans cultivated canebrakes.
Well, several reasons. As y'all may know, bamboo is stronger than any wood, and therefore it makes a fantastic building material.
The Cherokee used, and still use, river cane to make fishing poles, fish traps, arrows, frames for structures, musical instruments, mats, pipes, and absolutely gorgeous double-woven baskets that can even hold water.
This stuff is, no joke, a viable alternative to plastic for a lot of things. The seeds and shoots are also edible.
Uh I know this is out of left field but I work in plant cloning - it's a lot easier than you'd think to do for plants and it's honestly a really important conservation tool, and good for making a TON of seedlings in a short amount of time. I can look into this genus for like, cloning viability?
Hi y'all, reblogging the Canebrake Post again. It's been over a year since I fell in love with the coolest plant ever. I'm trying to bring it back but I am very small so if any of y'all have a Canebrake nearby you might wanna talk to the owners and contact some local parks and nature preserves yeah?
A lot of people are asking how to distinguish Rivercane from invasive bamboo species. This link should help you!
Here's some distinguishing traits I've observed myself:
River cane has a really full, bushy, leafy look that makes it really hard to recognize as bamboo from a distance, because the stems are harder to see. The shape of the individual cane with its branches and leaves is narrow, because the branches spread out very little, but the foliage is DENSE. It's like a plume.
River cane is stronger, denser and heavier than invasive bamboos I've seen.
River cane stems are always green all the way around, no yellow (unless the plant's been dead for a good long time)
River cane stems feel smooth like plastic to the touch. The common invasive bamboo I've seen here, when you run your hand upwards along it, the stem feels awful like sandpaper.
The biggest way to distinguish them: River cane grows 6-4 feet tall when it's in little patches, and up to 10-12 feet when it's in a large size patch (like, the size of a backyard) It is known to reach up to 15 feet tall nowadays and historical records claim heights of 30 feet or more in fertile river valleys. I really want to stress that it's RARE for it to get big. A canebrake will almost always be many times wider than it is tall (sometimes they grow in very long strips along fence rows)
The best time to look for it is in winter before things leaf out, because it's evergreen and grows in dense masses, making it easy to spot.
Some more cool stuff i've found out—River cane was a common food of bison! Earliest European settlers reported canebrakes so big that "100 bison could graze on a single canebrake." Apparently it used to make extremely high quality forage for livestock, before it was mostly destroyed.
European settlers apparently set their pigs loose in the canebrakes purposefully to destroy them, because the pigs would root up the nutritious rhizomes and kill the plant. Thinking of the relationship between Bison and Canebrakes, and the relationship between Eastern Native Americans and Canebrakes, and the relationship between Plains Native Americans and Bison...it seems like a pattern, huh?
In the case of both bison and canebrakes, they were a fundamental part of their ecosystem, and fundamental part of the indigenous cultures that used them for every material, their musical instruments, their homes, their most advanced arts, and even food (Rivercane shoots are edible just like other bamboo, and supposedly the seeds are edible too!) but European settlers purposefully destroyed the species almost completely. I can't help but wonder if there was a similar motivation.
Books that talk about Rivercane:
Weaving New Worlds: Southeastern Cherokee Women and Their Basketry by Sarah H. Hill talks about rivercane a LOT and gives tons of details of its uses and history.
Saving the Wild South: The Fight for Native Plants on the Brink of Extinction by Georgann Eubanks has a whole chapter about Rivercane.
Venerable Trees: History, Biology and Conservation in the Bluegrass is a book about Kentucky, but it talks about rivercane's importance including its relationship with bison. It's only a couple pages out of the whole book but it's still great information.
By the way, though, if you read any very early European account of Kentucky, the word "cane" is everywhere. It's just such a nondescript word it's hard to realize its significance.
On a more personal note...god, I love this plant. Here's another photo I took. When you're in the canebrake, it feels so cut off from the rest of the world; it's shaded, quiet, cool, and someone 10 yards away couldn't even see you.
i actually talked to my neighbor that I learned owns the canebrake. She had no idea what it was but she was excited to learn about it! It was a lovely conversation.
Apparently, she knew I had been down there a bunch of times and thought nothing of it. She said "Yeah I told my husband, If you see her down there, just leave her alone she's doing her thing." In the most sincere way possible, God bless this woman
She said I could transplant all I wanted, too. This was great! ...but I quickly learned how RIDICULOUSLY HARD it is to transplant from a canebrake of this size. The rhizomes are so big and tough, a shovel can hardly get through them, and unless you're at the edge of the canebrake, there's a thick mat of them going every which way. I was driving my whole weight down on this shovel and it kept just denting the rhizome and glancing off.
I did get some transplants but each one took like half an hour because I was fighting for my life!
Also, with a canebrake this size, it doesn't grow little canes that will later become bigger—it shoots up tall canes in a single season. The youngest canes, more accessible and toward the edge of the canebrake, were significantly taller than I was. I cut the top off of one transplant for ease of handling—I had a pair of hand pruners with me that were usually perfectly useful for small limbs, but I could barely get these things through the cane, it's just so strong and dense.
Someone research the material properties of this stuff ASAP. It's insanely strong.
Here is some YouTube videos that talk about river cane!
Roger Cain of Keetoowah/Western Band Cherokee shows and talks about Rivercane. This video has a BIG canebrake, the mature canes look as if they could be 15ft tall, but he says it's only a fragment of what they used to be!
Stan the River Man visits a Canebrake in Northern Kentucky. This channel only has 22 subscribers, I feel like I've discovered a rare and priceless treasure
River Cane Renaissance, Episode 1. This guy has devoted a large part of his life to studying Rivercane and now works with the eastern band Cherokee to try and bring it back.
Chattooga river conservancy video on Rivercane, haven't watched the whole thing myself but it looks really good and detailed
These videos barely have any views or comments, but y'all can help! We can spread the knowledge.
For privacy reasons, I share details online of my real world activities only reluctantly, and not very often. But don't be bamboozled into thinking I have forgotten the Canebrakes. It's exactly the opposite.
I have done a lot of networking and made a lot of contacts. I am not alone. There are other people with a story exactly like mine: first, they heard an offhanded mention of forests of American bamboo, which shattered everything they thought they knew about their environment. Next, they became crazed with fascination, searching for knowledge with insane ferocity. Then, they realized that river cane is not only a plant, it is a keystone species symbiotic with indigenous cultures for thousands of years, and it was almost destroyed due to the subjugation of its habitat and the genocide of its caretakers.
The canebrakes' devotees have been working tirelessly to compile every single scrap of information on canebrakes that exists in writing. Every record, every primary source, every historical mention, every comment and conjecture. I have been given access to some of this priceless treasure trove. The wealth of information is amazing, but even more amazing is how much is still unknown.
The history, properties, and ecological importance of the canebrakes is so much more than I imagined.
For example, the massive amounts of seeds produced by huge canebrakes in flowering events fed the passenger pigeon flocks. Likewise the Carolina parakeet was also dependent on canebrakes, and the extinct Bachman's warbler was a canebrake specialist. The destruction of canebrakes could be responsible for why these birds went extinct.
Canebrakes were absolutely fundamental to the indigenous peoples of the Southeast, providing for their every need. Food, shelter, containers, tools, music and art. The settlers foolishly thought the indigenous peoples were not "advanced" enough for metal tools, but in truth, they already had a material superior to metal. River cane by weight is stronger than steel. You can make knives and blades out of it.
I am excited for the future. It seems like momentum is building to save the river cane and bring back the canebrakes, and I am hoping to join together with all the other like-minded people to accomplish this task.
A new organization has just started in Alabama to bring back the river cane. Here is a blog post to read from a few months ago.
Was gonna go in the notes for this but screw it, I've reblogged this before because river cane is so cool
Nashville is actually reintroducing it at a couple of parks within the city limits! For example, Shelby Bottoms (where I ride bikes most days) has a bunch of smaller canebrakes dispersed along the river and they seem to be growing steadily
Also, Dr. Jon Evans, a professor at Sewanee, recently published a paper demonstrating that there are clonal stands of hill cane there that are around 1700 years old! Still a little inconclusive regarding the flowering/reproduction issue but still! I want to see that too if I can
Makes me sad every time I go to the greenways in Knoxville and am like "man you could be introducing so much river cane here, it's great"
Holy shit okay i looked it up and HOLY SHIT. Published 2 months ago.
1700 years old.
And it says A. appalachiana, (the Appalachian species of native rivercane), has actually NEVER been observed to flower, which means ???? i dont even know what the fuck that means.
THIRTY hectares. THIRTY. That's HUGE.
Does this mean that???? Most canebrakes are so small now because they're babies????
There used to be patches of Alabama Canebrake Pitcher Plant down near my grandparents' lake.... and then they had to sell the farm. And even knowing there were endangered plants there didn't help. I can probably find a couple of stands of cane with a fair amount of accuracy, just because my grandfather used it to make cane poles. So uh. If anybody wants to take a look at that, I'll be glad to spill that information.
If this is the case you should probably get in touch with the people who study the Pitcherplant because it could be a site that no one knows about and would change hte future of the species.
your historical fiction smut isn’t very accurate to the period. in the plague era of the 21st century, women’s bodies were so frail from the ravages of disease that they had to wear restrictive compression garments to squeeze the blood back into their brains so they wouldn’t pass out whenever they stood up. smut should feature extended compression garment removal scenes as part of the foreplay or it just isn’t realistic. really takes me out of the setting.
I feel it would be good to have a word that's like not ragebait but shamebait, where you can read a post and just go 'ah, this person just wants me to feel ashamed of myself and is not engaging with the issue in a constructive or useful way. I do not have to participate in this actually' and like. move on with your day
getting lost in boston is fun because I turned around on a street corner three times and some guy yelled "hey stupid! the bus is that way!" very helpful interaction and accurate insult, 10/10 no notes
one time I walked around a building a couple times looking for a bathroom and this guy went "this bitch thinks she's on a merrygoround, where the fuck are you tryna go? bathroom? one floor down to the right behind the door that says bathroom."
My very first time in Boston. I was absolutely miserable, trying to drag my giant suitcase up a lengthy set of stairs in the pouring rain. This guy who had already reached the top looked back at me with the most pure expression of disgust I’ve ever seen in anyone’s eyes, marched back down the stairs, grabbed my suitcase, carried it to the top, left it there for me, and walked away without ever saying a word. I think about him often.
For the people in the notes going "why is Boston like this": a) the insults are a way to show you have no ulterior motives when helping someone (and don't need to be thanked or repaid), and b) Boston was settled by the Irish
also the Italians. mixing Irish and Italian sociocultural attitudes had the effect of multiplying the Sass Levels by the power of infinity, in the sense that you get all of the clever dry wit of the Irish and all of the bitchy gossipy condensation of the Italians rolled into one very stereotypically overly-friendly American package.
also worth noting that who you are to them doesn’t matter. they’ll talk to strangers like that and will also talk to their best friends like that. they’re just Like That.
By and large, Bostonians do not help you because they are secretly kind. They do it because they refuse to suffer fools. When they see someone do something they think is stupid in public, they are angry because they have to witness people being idiots. The only way they can get rid of the problem -- someone being an idiot -- is to fix that person's problem so they don't have to watch your bullshit anymore. So they help you, and they berate you for it. They will go tell their friends how you ruined their morning and wasted their time for being a fucking idiot. If they help you dig your car out in winter because you don't have a shovel, they may even gift you a shovel. This is not an act of generosity. They do it so they never have to endure your incompetence ever again. From the bottom of their hearts, they hate you and never want to see you again.
However, the "well, someone's gotta do it, and this idiot won't, so I will" mentality secretly betrays that they have extremely strong values about caring for a community. If people can't take care of themselves, someone else has to do it, and if you're the one seeing it happen, that someone is you.
Through this process, there is a random chance that the angry Bostonian will adopt you like you are a helpless puppy. This is especially true if they see you make the same mistake on a routine: every day, this person does not take the bus even though a reasonable person would; they don't know how to care for themselves, I must watch out for them. If every day at 8pm you drop your bag, you may be an idiot, but you're an incurable idiot. You can’t help it, you need ongoing assistance, so they will show up at 8pm every day and insist that they carry your bag whether you like it or not. They'll give you a hard time, because you've given them a new job, but it evolves into a secret affection and extremely strong protective instinct. They will not let anyone fuck with you. They will throw down for you. They will be sad if they don't get to see you anymore, but they will never admit that or even that they like you. They will give you a $100 gift card to dunkin instead.
This response is much more likely if they realize you're not an idiot, you are just physically unable to Do The Thing. In this case, they have nothing to berate you for, but The Job Still Has To Be Done, so they silently carry your suitcase up the stairs. This also happens with moving heavy stuff on and off the train. They will not ask permission and they probably won't speak to you or even look at you. And they'll shovel the snow out of the 80 yr old neighbor's front yard because someone's gotta do it, and grandma can't. Unless you look out your window at the right time, you may never know who plowed your driveway. They may even outright deny it because they don’t know how to accept affection.
A defining characteristic of the Bostonian psyche is their deep commitment to care for those who cannot care for themselves, the bitterest hatred for anyone who can but doesn't, and a compulsive need to fix problems (real or imagined).
What just happened in Hungary has a huge positive impact far beyond Hungary. For Ukraine, for the EU, for the future of authoritarianism internationally......
Also, celebrating with a parliamentary techno rave sounds absolutely perfect and I'm jealous of everyone who got to attend. Also, to live in a country with an ousted dictator? Doesn't that sound nice.
I started a new medication four days ago. It dramatically improved symptoms within 24 hours.
I just hyper focused on a project for a few hours for the first time in almost two years.
And yesterday, I realized partway through a client session that I was clear-headed, not fighting through brain fog, and was able to hold the client’s whole history in my head while working with them. I haven’t been able to do that in … I don’t know how long. Years.
I haven’t had brain fog for the past three days. I haven’t had a migraine for the last two days. I haven’t had to take a triptan / migraine rescue med all week.
My face is noticeably, dramatically less puffy with inflammation. My ears haven’t turned bright red with vascular pressure in three days, when that has been a near-daily occurrence since late 2021.
I can think. My mind is moving fast like it used to instead of sluggishly churning. I haven’t lost words partway through a sentence in three days. I’ve been able to access words reliably instead of groping for super common language and failing to find it.
My joints don’t hurt nearly as much, and don’t feel nearly so “floppy”/“loose”. A few days ago, my physical therapist confirmed that the inflammation around my joints is remarkably reduced, less swollen to the touch. My head isn’t hot to the touch. I slept on my side for a little bit last night and it didn’t immediately mess up my neck. The tinnitus isn’t quite gone, but it’s definitely less intense.
I had given up on ever being my old self or having my brain back. This is… this is wildly hopeful.
I started on 2.5mg zepbound. (I wanted vials to microdose with, buuuut insurance only covered the 2.5mg auto injectors. Hopefully this is tolerable. If the side effects are too much, I’ll resort to paying out of pocket for vials.) I was already frighteningly, intimidatingly hopeful about it before starting it, from the research papers and case studies and personal stories I’d read.
Here’s the paper that started me down this rabbit hole: Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome.
“Among 47 cases (mean age 39, range 15–71, 89 % female), 89 % demonstrated clinical benefit with GLP-1RAs for a broad range of problems associated with MCAS.”
Some more resources:
A possible new treatment for MCAS - roundup of research, case studies, etc.
Article sourcing interviews with practitioners/specialists who are prescribing it
Emerging roles of glucagon like peptide-1 in the management of autoimmune diseases and diabetes-associated comorbidities - This goes over a number of things that this med helps with, including PCOS, psoriasis, IBD, and Alzheimer’s.
Many of the studies on this with various conditions are relatively small and preliminary, but very promising. Hashimoto’s, multiple sclerosis (it seems to lead to re-myelination??), OCD (?!), rheumatoid arthritis, fibromyalgia, lupus, and … well, basically any condition that involves chronic inflammation. It’s also thought to have immunomodulation effects. Some folks are even reporting that it helps their c-ptsd symptoms and adhd symptoms. Obviously it also helps histamine-elevated anxiety, but that goes with the mcas treatment bit.
There’s currently a large trial (n=1000) in progress for its impact on long covid.
Also, iirc, no one in the MCAS study became underweight. Just symptom relief.
I did … way too much reading before getting on one of these myself. Lots of browsing forums where people share complications and experiences, trying to deduce a pattern in the problems. Here’s what I found (not scientific at all, just me looking for patterns in personal stories). Disclaimer: none of this is medical advice, I’m just sharing stories and observations, I am not a doctor, etc.
Sometimes people have reactions to the injection site. This may be due to nickel allergies and is sometimes cleared up by switching to a nickel-free needle (which aren’t terribly common, weirdly?).
Tirzepatide (which acts on GLP-1 and GIP) seems to be better tolerated than semaglutide. When semaglutide doesn’t work or causes intolerable side effects, people sometimes have better results when they switch to tirzepatide. But semaglutide does seem to improve symptoms for a significant subset of people.
Tirzepatide from a compounding pharmacy (which is more budget friendly and easier to get ahold of) is more likely to have complications than tirzepatide from the original manufacturer. Probably due to consistency issues. I also wonder if some people are having a reaction to the B-12 that compounding pharmacies frequently include in the tirzepatide solution. (I have no data to corroborate this suspicion, just speculating based on how mcas sensitivity can be with various components/additives of medication.)
People have more issues on higher doses. Currently this stuff’s only usually covered by insurance (in the u.s. at least) if you’re prescribed it for obesity or type 2 diabetes. The starting dose for diabetes (for tirzepatide anyway) is 2.5mg a week (injected). The starting dose for obesity is often 4-5mg/week. If you have mcas/are medication sensitive, this can be Way Too Much. Microdosing is not FDA approved, but i read mostly of people starting microdosing at 0.25 - 0.5mg a week. Microdosing generally causes fewer issues.
The other time people have issues is when they don’t hydrate enough, don’t eat enough protein/fiber, or try to eat larger meals instead of ~6 tiny meals through the day. (On day 2-3, I ran into the consequences of not eating frequent small meals quite enough. The slowed gut motility is obnoxious. Still figuring out the best rhythm for that and hoping it improves, as i’ve heard it often can. I’ve basically had one side effect per day, and each side effect goes away after a day, and then I get the next one.)
As for getting prescriptions: Rheumatologists are getting increasingly aware of this and willing to prescribe, so that’s a possible route if you’re already seeing someone who stays up on research. Otherwise… it’s hard to get on without a 27+ bmi and an additional condition (sleep apnea is a common one, but others are high bp, high cholesterol, fatty liver, and I’m sure there’s others). Possible, but more difficult.
Anyway, I can’t possibly sit on this. Obviously I’m only on day 5, haven’t even taken my second shot yet, but. The positive effects have been unreal. I didn’t think I was ever going to feel clear headed again, I’d nearly given up hope of more than marginal improvements. I’ve been dealing with severe symptoms for nearly five years. (And less severe symptoms for many years before that.)
Two week update…! I tallied up my migraine days / severities / etc over the past 6 weeks.
The 1 month before starting tirzepatide:
4 severe migraine days
9 moderate migraine days
14 mild migraine days
3 migraine free days
The past two weeks on tirzepatide:
1 moderate migraine days (had the migraine before taking the first shot so this might not count)
6 mild migraine days (concentrated around the couple days before the next dose, and/or the couple days before my menstrual cycle began)
7 migraine free days
All while maintaining a fairly stable weight. (Been hyper-vigilant about getting enough protein and hydration as neglecting those are the biggest pitfalls people fall into with this medication.) Actively trying to maintain a stable weight for now just to make sure I can manage caloric needs on this med; I dont want to lose muscle, that would be bad on so many levels.
And my neck was pretty badly misaligned for a good portion of the last week, which historically would mean severe migraine time… but instead I just had the neck discomfort without hardly any migraine. And minimal fluid backup/inflammation. (Confirmed by my physical therapist who was very surprised by how bad my neck was yet how low my pressure/inflammation was.)
But also my joints are more stable overall, and go back into place easier, and stay there for longer once they’re where they should be. Everything is less wobbly since there isn’t so much swelling. AndI mean everything - neck, wrists, fingers, hips, knees, ankles.
Haven’t noticed any worsening in POTS symptoms either. Haven’t noticed POTS symptoms at all, now that I think about it. Haven’t been tracking those like I’ve been tracking inflammatory symptoms / migraine / mast cell stuff though.
Also I haven’t taken an antihistamine in two weeks??? and barely taken any anti-inflammatories / NSAIDs, and only one dose a day when I do take an NSAID???? I was taking waaay too many NSAID’s prior to this just to function. (and in the past few months I started feeling fairly prompt, sharp negative reactions to NSAID’s - cramping and abdominal pain - so I knew the 15+ years of 600-800mg ibuprofen, sometimes multiple times a day, was finally catching up to me and something needed to change.)
My body feels better. I feel better in my body. My brain feels better, I don’t feel like I’m walking with a concussion all the time. I haven’t lost words partway through a sentence in 2 weeks. I’m in less pain.
My mood has improved. I’m down to my pre-quarantine summer dose of my antidepressants do the first time since 2020 (and realizing I may have been using the higher dose to brute force my way through the cranial pressure brain fog). There’s bit of extra somatic anxiety, but I’m not sure if that’s situational/environmental/related to deadline stresses, or if it’s chemical. Will have more clarity on that in a week or so.)
Oh and the digestive side effects have improved dramatically. Whew. That’s the one I was most nervous about. I can tolerate a lot of side effects if it means I get to be *me* again, but my understanding is that certain severe levels of slowed gut motility are as debilitating and life-interfering as the kind of migraine stuff I was dealing with. I’d rather not just trade one problem for another of equal severity. But it’s looking like I’m gonna be okay on that front. (Keeping fingers crossed but overall relieved there.)
The 3 inches (7.6 cm) of fluid/inflammation/?? that disappeared from my waist after the first few days has not returned. Hasn’t gone down any further, so I suspect that was the amount of pure… puffiness/inflammation/fluid-retention I was dealing with. Was briefly worried it was fluid loss from digestive issues but the measurement hasn’t changed after my digestive stuff improved. And I have been hydrating sooo much. So that’s fascinating and a bit wild.
3-4 moderate migraine days (1 was the day of the first shot, beginning before taking the first shot, so I don’t know if it counts) - usually in the day before taking next dose, or the day before menstrual cycle began. Or in one case, the day after eating multiple migraine trigger foods as an experiment.
11 mild migraine days
14 migraine-free days
As a comparison point, the 30 days before beginning tirzepatide, I had:
4 severe migraine days
9 moderate migraine days
14 mild migraine days
3 migraine-free days
- side effects have almost completely calmed down. Still getting the cold feeling within an hour of the injection, but it lasts less long and is less pervasive / intense (as of last week’s shot, it’s down to fingers/nose/toes for the first night and then it goes away). Digestion stuff has vastly improved.
- Inflammation remains SO MUCH better. Normally the couple days before my Emgality shot (monthly anti-migraine peptid that was the most effective treatment I’ve had before the tirzepatide), I will start having more symptoms, worse migraines, more brain fog, etc. I didn’t even notice it this time. Almost missed my Emgality injection day because I didn’t have the symptom cues to remind me. I felt *great* the past few days despite it being the few days before my Emgality injection *and* the few days before my tirzepatide injection.
- It does not *cancel out* mcas, I can’t just… eat whatever I want and be fine. I had one day where I ate bread and dairy as an experiment, and the next day had brain fog / migraine / achey / fatigue all day. Still only a moderate migraine but it’s the worst I’ve had all month. So I still have to avoid histamine triggers. But it significantly reduces severity and frequency of flares. (And makes it easier to avoid eating trigger foods.) my metamour described it as a “blanket on top of the mcas symptoms” - she’s microdosing semaglutide and finds it prevents severe flareups though she still experiences mild to moderate flareups/symptoms. just doesn’t get knocked flat like she was before, which is huge (it’s been *debilitating* for her in a whole-body way, more so than for me, and more sensitive).
- weight talk: Losing weight a little faster than I’d prefer (2lb/wk week, or 0.9kg/week). I’m hoping some of that was just the inflammation/fluid weight and that it’ll thus slow down soon. Making sure I’m getting 60-80g protein/day, fiber, lots of hydration, and enough calories per day. Almost as many calories a day as I was eating before the meds, but still shedding weight faster than I’m comfortable with. So that’s fascinating and I don’t quite understand the mechanism there.
- I continue to feel less… swollen? Bloated? Puffy? felt like my skin was tight for so long. Uncomfortably so. Like yes some dysmorphia feelings because my body didn’t feel/look like it used to, but also it was like feeling swollen over my whole body which involved physical discomfort. Disconcerting experience. That’s gone and I feel like I can feel my skin again. I don’t know if that makes any sense. It’s just like there was …. Fluid or cotton beneath my skin and made everything hard to sense/perceive? and messed with proprioception. (This is also visible visually; I have been taking daily pictures of my face to evaluate this, and it looked significantly less puffy within a few days of the first injection.)
- joints continue to be way more stable. Except my shoulders, they got more unstable, my right shoulder feels like it keeps “dropping” out of place unless I actively engage the muscles. physical therapist confirmed it’s not fully in socket when I have that “dropping” sensation. Very uncomfortable. But my neck / ribs / wrists / ankles / knee / hips are soooo much better.
- I haven’t experienced worsened POTS symptoms, but I know it’s common for POTS to worsen on a GLP-1. The GLP1+GIP like tirzepatide seems to be somewhat better for POTS (there’s some evidence suggesting that worsening POTS symptoms are associated with increased GIP secretion) but reports on how POTS patients respond to it are mixed.
I started a new medication four days ago. It dramatically improved symptoms within 24 hours.
I just hyper focused on a project for a few hours for the first time in almost two years.
And yesterday, I realized partway through a client session that I was clear-headed, not fighting through brain fog, and was able to hold the client’s whole history in my head while working with them. I haven’t been able to do that in … I don’t know how long. Years.
I haven’t had brain fog for the past three days. I haven’t had a migraine for the last two days. I haven’t had to take a triptan / migraine rescue med all week.
My face is noticeably, dramatically less puffy with inflammation. My ears haven’t turned bright red with vascular pressure in three days, when that has been a near-daily occurrence since late 2021.
I can think. My mind is moving fast like it used to instead of sluggishly churning. I haven’t lost words partway through a sentence in three days. I’ve been able to access words reliably instead of groping for super common language and failing to find it.
My joints don’t hurt nearly as much, and don’t feel nearly so “floppy”/“loose”. A few days ago, my physical therapist confirmed that the inflammation around my joints is remarkably reduced, less swollen to the touch. My head isn’t hot to the touch. I slept on my side for a little bit last night and it didn’t immediately mess up my neck. The tinnitus isn’t quite gone, but it’s definitely less intense.
I had given up on ever being my old self or having my brain back. This is… this is wildly hopeful.
I started on 2.5mg zepbound. (I wanted vials to microdose with, buuuut insurance only covered the 2.5mg auto injectors. Hopefully this is tolerable. If the side effects are too much, I’ll resort to paying out of pocket for vials.) I was already frighteningly, intimidatingly hopeful about it before starting it, from the research papers and case studies and personal stories I’d read.
Here’s the paper that started me down this rabbit hole: Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome.
“Among 47 cases (mean age 39, range 15–71, 89 % female), 89 % demonstrated clinical benefit with GLP-1RAs for a broad range of problems associated with MCAS.”
Some more resources:
A possible new treatment for MCAS - roundup of research, case studies, etc.
Article sourcing interviews with practitioners/specialists who are prescribing it
Emerging roles of glucagon like peptide-1 in the management of autoimmune diseases and diabetes-associated comorbidities - This goes over a number of things that this med helps with, including PCOS, psoriasis, IBD, and Alzheimer’s.
Many of the studies on this with various conditions are relatively small and preliminary, but very promising. Hashimoto’s, multiple sclerosis (it seems to lead to re-myelination??), OCD (?!), rheumatoid arthritis, fibromyalgia, lupus, and … well, basically any condition that involves chronic inflammation. It’s also thought to have immunomodulation effects. Some folks are even reporting that it helps their c-ptsd symptoms and adhd symptoms. Obviously it also helps histamine-elevated anxiety, but that goes with the mcas treatment bit.
There’s currently a large trial (n=1000) in progress for its impact on long covid.
Also, iirc, no one in the MCAS study became underweight. Just symptom relief.
I did … way too much reading before getting on one of these myself. Lots of browsing forums where people share complications and experiences, trying to deduce a pattern in the problems. Here’s what I found (not scientific at all, just me looking for patterns in personal stories). Disclaimer: none of this is medical advice, I’m just sharing stories and observations, I am not a doctor, etc.
Sometimes people have reactions to the injection site. This may be due to nickel allergies and is sometimes cleared up by switching to a nickel-free needle (which aren’t terribly common, weirdly?).
Tirzepatide (which acts on GLP-1 and GIP) seems to be better tolerated than semaglutide. When semaglutide doesn’t work or causes intolerable side effects, people sometimes have better results when they switch to tirzepatide. But semaglutide does seem to improve symptoms for a significant subset of people.
Tirzepatide from a compounding pharmacy (which is more budget friendly and easier to get ahold of) is more likely to have complications than tirzepatide from the original manufacturer. Probably due to consistency issues. I also wonder if some people are having a reaction to the B-12 that compounding pharmacies frequently include in the tirzepatide solution. (I have no data to corroborate this suspicion, just speculating based on how mcas sensitivity can be with various components/additives of medication.)
People have more issues on higher doses. Currently this stuff’s only usually covered by insurance (in the u.s. at least) if you’re prescribed it for obesity or type 2 diabetes. The starting dose for diabetes (for tirzepatide anyway) is 2.5mg a week (injected). The starting dose for obesity is often 4-5mg/week. If you have mcas/are medication sensitive, this can be Way Too Much. Microdosing is not FDA approved, but i read mostly of people starting microdosing at 0.25 - 0.5mg a week. Microdosing generally causes fewer issues.
The other time people have issues is when they don’t hydrate enough, don’t eat enough protein/fiber, or try to eat larger meals instead of ~6 tiny meals through the day. (On day 2-3, I ran into the consequences of not eating frequent small meals quite enough. The slowed gut motility is obnoxious. Still figuring out the best rhythm for that and hoping it improves, as i’ve heard it often can. I’ve basically had one side effect per day, and each side effect goes away after a day, and then I get the next one.)
As for getting prescriptions: Rheumatologists are getting increasingly aware of this and willing to prescribe, so that’s a possible route if you’re already seeing someone who stays up on research. Otherwise… it’s hard to get on without a 27+ bmi and an additional condition (sleep apnea is a common one, but others are high bp, high cholesterol, fatty liver, and I’m sure there’s others). Possible, but more difficult.
Anyway, I can’t possibly sit on this. Obviously I’m only on day 5, haven’t even taken my second shot yet, but. The positive effects have been unreal. I didn’t think I was ever going to feel clear headed again, I’d nearly given up hope of more than marginal improvements. I’ve been dealing with severe symptoms for nearly five years. (And less severe symptoms for many years before that.)
Two week update…! I tallied up my migraine days / severities / etc over the past 6 weeks.
The 1 month before starting tirzepatide:
4 severe migraine days
9 moderate migraine days
14 mild migraine days
3 migraine free days
The past two weeks on tirzepatide:
1 moderate migraine days (had the migraine before taking the first shot so this might not count)
6 mild migraine days (concentrated around the couple days before the next dose, and/or the couple days before my menstrual cycle began)
7 migraine free days
All while maintaining a fairly stable weight. (Been hyper-vigilant about getting enough protein and hydration as neglecting those are the biggest pitfalls people fall into with this medication.) Actively trying to maintain a stable weight for now just to make sure I can manage caloric needs on this med; I dont want to lose muscle, that would be bad on so many levels.
And my neck was pretty badly misaligned for a good portion of the last week, which historically would mean severe migraine time… but instead I just had the neck discomfort without hardly any migraine. And minimal fluid backup/inflammation. (Confirmed by my physical therapist who was very surprised by how bad my neck was yet how low my pressure/inflammation was.)
But also my joints are more stable overall, and go back into place easier, and stay there for longer once they’re where they should be. Everything is less wobbly since there isn’t so much swelling. AndI mean everything - neck, wrists, fingers, hips, knees, ankles.
Haven’t noticed any worsening in POTS symptoms either. Haven’t noticed POTS symptoms at all, now that I think about it. Haven’t been tracking those like I’ve been tracking inflammatory symptoms / migraine / mast cell stuff though.
Also I haven’t taken an antihistamine in two weeks??? and barely taken any anti-inflammatories / NSAIDs, and only one dose a day when I do take an NSAID???? I was taking waaay too many NSAID’s prior to this just to function. (and in the past few months I started feeling fairly prompt, sharp negative reactions to NSAID’s - cramping and abdominal pain - so I knew the 15+ years of 600-800mg ibuprofen, sometimes multiple times a day, was finally catching up to me and something needed to change.)
My body feels better. I feel better in my body. My brain feels better, I don’t feel like I’m walking with a concussion all the time. I haven’t lost words partway through a sentence in 2 weeks. I’m in less pain.
My mood has improved. I’m down to my pre-quarantine summer dose of my antidepressants do the first time since 2020 (and realizing I may have been using the higher dose to brute force my way through the cranial pressure brain fog). There’s bit of extra somatic anxiety, but I’m not sure if that’s situational/environmental/related to deadline stresses, or if it’s chemical. Will have more clarity on that in a week or so.)
Oh and the digestive side effects have improved dramatically. Whew. That’s the one I was most nervous about. I can tolerate a lot of side effects if it means I get to be *me* again, but my understanding is that certain severe levels of slowed gut motility are as debilitating and life-interfering as the kind of migraine stuff I was dealing with. I’d rather not just trade one problem for another of equal severity. But it’s looking like I’m gonna be okay on that front. (Keeping fingers crossed but overall relieved there.)
The 3 inches (7.6 cm) of fluid/inflammation/?? that disappeared from my waist after the first few days has not returned. Hasn’t gone down any further, so I suspect that was the amount of pure… puffiness/inflammation/fluid-retention I was dealing with. Was briefly worried it was fluid loss from digestive issues but the measurement hasn’t changed after my digestive stuff improved. And I have been hydrating sooo much. So that’s fascinating and a bit wild.
I started a new medication four days ago. It dramatically improved symptoms within 24 hours.
I just hyper focused on a project for a few hours for the first time in almost two years.
And yesterday, I realized partway through a client session that I was clear-headed, not fighting through brain fog, and was able to hold the client’s whole history in my head while working with them. I haven’t been able to do that in … I don’t know how long. Years.
I haven’t had brain fog for the past three days. I haven’t had a migraine for the last two days. I haven’t had to take a triptan / migraine rescue med all week.
My face is noticeably, dramatically less puffy with inflammation. My ears haven’t turned bright red with vascular pressure in three days, when that has been a near-daily occurrence since late 2021.
I can think. My mind is moving fast like it used to instead of sluggishly churning. I haven’t lost words partway through a sentence in three days. I’ve been able to access words reliably instead of groping for super common language and failing to find it.
My joints don’t hurt nearly as much, and don’t feel nearly so “floppy”/“loose”. A few days ago, my physical therapist confirmed that the inflammation around my joints is remarkably reduced, less swollen to the touch. My head isn’t hot to the touch. I slept on my side for a little bit last night and it didn’t immediately mess up my neck. The tinnitus isn’t quite gone, but it’s definitely less intense.
I had given up on ever being my old self or having my brain back. This is… this is wildly hopeful.
I started on 2.5mg zepbound. (I wanted vials to microdose with, buuuut insurance only covered the 2.5mg auto injectors. Hopefully this is tolerable. If the side effects are too much, I’ll resort to paying out of pocket for vials.) I was already frighteningly, intimidatingly hopeful about it before starting it, from the research papers and case studies and personal stories I’d read.
Here’s the paper that started me down this rabbit hole: Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome.
“Among 47 cases (mean age 39, range 15–71, 89 % female), 89 % demonstrated clinical benefit with GLP-1RAs for a broad range of problems associated with MCAS.”
Some more resources:
A possible new treatment for MCAS - roundup of research, case studies, etc.
Article sourcing interviews with practitioners/specialists who are prescribing it
Emerging roles of glucagon like peptide-1 in the management of autoimmune diseases and diabetes-associated comorbidities - This goes over a number of things that this med helps with, including PCOS, psoriasis, IBD, and Alzheimer’s.
Many of the studies on this with various conditions are relatively small and preliminary, but very promising. Hashimoto’s, multiple sclerosis (it seems to lead to re-myelination??), OCD (?!), rheumatoid arthritis, fibromyalgia, lupus, and … well, basically any condition that involves chronic inflammation. It’s also thought to have immunomodulation effects. Some folks are even reporting that it helps their c-ptsd symptoms and adhd symptoms. Obviously it also helps histamine-elevated anxiety, but that goes with the mcas treatment bit.
There’s currently a large trial (n=1000) in progress for its impact on long covid.
Also, iirc, no one in the MCAS study became underweight. Just symptom relief.
I did … way too much reading before getting on one of these myself. Lots of browsing forums where people share complications and experiences, trying to deduce a pattern in the problems. Here’s what I found (not scientific at all, just me looking for patterns in personal stories). Disclaimer: none of this is medical advice, I’m just sharing stories and observations, I am not a doctor, etc.
Sometimes people have reactions to the injection site. This may be due to nickel allergies and is sometimes cleared up by switching to a nickel-free needle (which aren’t terribly common, weirdly?).
Tirzepatide (which acts on GLP-1 and GIP) seems to be better tolerated than semaglutide. When semaglutide doesn’t work or causes intolerable side effects, people sometimes have better results when they switch to tirzepatide. But semaglutide does seem to improve symptoms for a significant subset of people.
Tirzepatide from a compounding pharmacy (which is more budget friendly and easier to get ahold of) is more likely to have complications than tirzepatide from the original manufacturer. Probably due to consistency issues. I also wonder if some people are having a reaction to the B-12 that compounding pharmacies frequently include in the tirzepatide solution. (I have no data to corroborate this suspicion, just speculating based on how mcas sensitivity can be with various components/additives of medication.)
People have more issues on higher doses. Currently this stuff’s only usually covered by insurance (in the u.s. at least) if you’re prescribed it for obesity or type 2 diabetes. The starting dose for diabetes (for tirzepatide anyway) is 2.5mg a week (injected). The starting dose for obesity is often 4-5mg/week. If you have mcas/are medication sensitive, this can be Way Too Much. Microdosing is not FDA approved, but i read mostly of people starting microdosing at 0.25 - 0.5mg a week. Microdosing generally causes fewer issues.
The other time people have issues is when they don’t hydrate enough, don’t eat enough protein/fiber, or try to eat larger meals instead of ~6 tiny meals through the day. (On day 2-3, I ran into the consequences of not eating frequent small meals quite enough. The slowed gut motility is obnoxious. Still figuring out the best rhythm for that and hoping it improves, as i’ve heard it often can. I’ve basically had one side effect per day, and each side effect goes away after a day, and then I get the next one.)
As for getting prescriptions: Rheumatologists are getting increasingly aware of this and willing to prescribe, so that’s a possible route if you’re already seeing someone who stays up on research. Otherwise… it’s hard to get on without a 27+ bmi and an additional condition (sleep apnea is a common one, but others are high bp, high cholesterol, fatty liver, and I’m sure there’s others). Possible, but more difficult.
Anyway, I can’t possibly sit on this. Obviously I’m only on day 5, haven’t even taken my second shot yet, but. The positive effects have been unreal. I didn’t think I was ever going to feel clear headed again, I’d nearly given up hope of more than marginal improvements. I’ve been dealing with severe symptoms for nearly five years. (And less severe symptoms for many years before that.)
I will add this: a downside of this medication is that every time you look up “[side effect you’re experiencing] medication-name”, most discussion you’ll find on forums is tainted with diet culture awfulness. It just feels gross every time. Sometimes you’ll get lucky and find a discussion thread on a medical condition board instead of a medication-specific forum, but even then, people will still make icky weight loss comments.
On the other hand, it’s the only way I was able to learn that the bizarre, bone-deep cold/chills I was experiencing on day 1 (starting within an hour of taking the shot in the late morning and getting worse until they finally cleared up in the evening) are a not-uncommon side effect that … isn’t listed on any medication guides as a side effect.
I started a new medication four days ago. It dramatically improved symptoms within 24 hours.
I just hyper focused on a project for a few hours for the first time in almost two years.
And yesterday, I realized partway through a client session that I was clear-headed, not fighting through brain fog, and was able to hold the client’s whole history in my head while working with them. I haven’t been able to do that in … I don’t know how long. Years.
I haven’t had brain fog for the past three days. I haven’t had a migraine for the last two days. I haven’t had to take a triptan / migraine rescue med all week.
My face is noticeably, dramatically less puffy with inflammation. My ears haven’t turned bright red with vascular pressure in three days, when that has been a near-daily occurrence since late 2021.
I can think. My mind is moving fast like it used to instead of sluggishly churning. I haven’t lost words partway through a sentence in three days. I’ve been able to access words reliably instead of groping for super common language and failing to find it.
My joints don’t hurt nearly as much, and don’t feel nearly so “floppy”/“loose”. A few days ago, my physical therapist confirmed that the inflammation around my joints is remarkably reduced, less swollen to the touch. My head isn’t hot to the touch. I slept on my side for a little bit last night and it didn’t immediately mess up my neck. The tinnitus isn’t quite gone, but it’s definitely less intense.
I had given up on ever being my old self or having my brain back. This is… this is wildly hopeful.
I started on 2.5mg zepbound. (I wanted vials to microdose with, buuuut insurance only covered the 2.5mg auto injectors. Hopefully this is tolerable. If the side effects are too much, I’ll resort to paying out of pocket for vials.) I was already frighteningly, intimidatingly hopeful about it before starting it, from the research papers and case studies and personal stories I’d read.
Here’s the paper that started me down this rabbit hole: Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome.
“Among 47 cases (mean age 39, range 15–71, 89 % female), 89 % demonstrated clinical benefit with GLP-1RAs for a broad range of problems associated with MCAS.”
Some more resources:
A possible new treatment for MCAS - roundup of research, case studies, etc.
Article sourcing interviews with practitioners/specialists who are prescribing it
Emerging roles of glucagon like peptide-1 in the management of autoimmune diseases and diabetes-associated comorbidities - This goes over a number of things that this med helps with, including PCOS, psoriasis, IBD, and Alzheimer’s.
Many of the studies on this with various conditions are relatively small and preliminary, but very promising. Hashimoto’s, multiple sclerosis (it seems to lead to re-myelination??), OCD (?!), rheumatoid arthritis, fibromyalgia, lupus, and … well, basically any condition that involves chronic inflammation. It’s also thought to have immunomodulation effects. Some folks are even reporting that it helps their c-ptsd symptoms and adhd symptoms. Obviously it also helps histamine-elevated anxiety, but that goes with the mcas treatment bit.
There’s currently a large trial (n=1000) in progress for its impact on long covid.
Also, iirc, no one in the MCAS study became underweight. Just symptom relief.
I did … way too much reading before getting on one of these myself. Lots of browsing forums where people share complications and experiences, trying to deduce a pattern in the problems. Here’s what I found (not scientific at all, just me looking for patterns in personal stories). Disclaimer: none of this is medical advice, I’m just sharing stories and observations, I am not a doctor, etc.
Sometimes people have reactions to the injection site. This may be due to nickel allergies and is sometimes cleared up by switching to a nickel-free needle (which aren’t terribly common, weirdly?).
Tirzepatide (which acts on GLP-1 and GIP) seems to be better tolerated than semaglutide. When semaglutide doesn’t work or causes intolerable side effects, people sometimes have better results when they switch to tirzepatide. But semaglutide does seem to improve symptoms for a significant subset of people.
Tirzepatide from a compounding pharmacy (which is more budget friendly and easier to get ahold of) is more likely to have complications than tirzepatide from the original manufacturer. Probably due to consistency issues. I also wonder if some people are having a reaction to the B-12 that compounding pharmacies frequently include in the tirzepatide solution. (I have no data to corroborate this suspicion, just speculating based on how mcas sensitivity can be with various components/additives of medication.)
People have more issues on higher doses. Currently this stuff’s only usually covered by insurance (in the u.s. at least) if you’re prescribed it for obesity or type 2 diabetes. The starting dose for diabetes (for tirzepatide anyway) is 2.5mg a week (injected). The starting dose for obesity is often 4-5mg/week. If you have mcas/are medication sensitive, this can be Way Too Much. Microdosing is not FDA approved, but i read mostly of people starting microdosing at 0.25 - 0.5mg a week. Microdosing generally causes fewer issues.
The other time people have issues is when they don’t hydrate enough, don’t eat enough protein/fiber, or try to eat larger meals instead of ~6 tiny meals through the day. (On day 2-3, I ran into the consequences of not eating frequent small meals quite enough. The slowed gut motility is obnoxious. Still figuring out the best rhythm for that and hoping it improves, as i’ve heard it often can. I’ve basically had one side effect per day, and each side effect goes away after a day, and then I get the next one.)
As for getting prescriptions: Rheumatologists are getting increasingly aware of this and willing to prescribe, so that’s a possible route if you’re already seeing someone who stays up on research. Otherwise… it’s hard to get on without a 27+ bmi and an additional condition (sleep apnea is a common one, but others are high bp, high cholesterol, fatty liver, and I’m sure there’s others). Possible, but more difficult.
Anyway, I can’t possibly sit on this. Obviously I’m only on day 5, haven’t even taken my second shot yet, but. The positive effects have been unreal. I didn’t think I was ever going to feel clear headed again, I’d nearly given up hope of more than marginal improvements. I’ve been dealing with severe symptoms for nearly five years. (And less severe symptoms for many years before that.)
Their mom notices, at the dinner table. She sees no nagging children, no stupid fights. She sees Lucy eating and speaking with perfect manners, Edmund analysing the economy and war with concerning skill, Susan being gracious but poised, like a diplomat.
Their father sees it in Peters eyes the first time they get into a fight. When he moves to punish Edmund for speaking out of turn, Peter calls him out on it. When his gaze meet his eldest son's, he's leveled by the war he sees behind it, the tensed muscle in his arm, the knuckles white around his knife. He's seen that before, in other soldiers. He doesn't know how to react.
Other children notice, too. Talking to all the Pevensie kids at the same time is like being the only one left out of a secret, and the way they touch and tease each other speaks of a history far deeper than their polite demeneor lets on. And when they walk they fall in line, as if there is a natural hierarchy between them.
The first time anyone picks a fight with Edmund, Peter comes home with a three week suspension and blood around his mouth. He looks more alive than you've seen him in weeks.
When Susan gets back in the pool after Narnia, she wins all the contests. Coaches can't explain how to beat her, because they don't understand how she's doing it, either. She seems to almost disappear when underwater.
Lucy, always gay and golden-haired, starts dancing, and never misses a step. She moves with an elegance that no 10 year old should have, and all the girls want to be friends with her
Edmund soon becomes the best student in his faculty. He always seems to know the right thing to say, and teachers laud his ability to think through complex problems. His mouth does get him in trouble sometimes, but the boy seems uncatchable, always talking his way through the cracks. And if not?
No one actively fears Peter, but everyone is a little scared of him sometimes. He's tall for his age, sure, but there is something else, some other air that seems to give him an authority far beyond what's normal for a teenage boy. He's nice enough, but teachers can't stand it, and bullies learn very quickly that pissing him off means missing teeth and black eyes.
The Pevensies are not quite inhuman, but not fully mortal, either
COULD you talk about ways to socially manipulate your doctor though? i've been trying to get evaluated for endometriosis for the better part of a decade but keep getting blown off. meanwhile my OBGYN is complaining that i've been on depo for a decade. yeah, because it makes me stop having a period. the period i keep telling y'all is unbearably painful. imagine that
So I will try.
I will give an example of what I did with my ADHD.
I was on stimulants and was miserable about it. I wanted to try new meds but I tested as "excellent response" when I took stimulants. So they were going to leave me on Adderall forever.
I did my research and based what I was reading on how I felt and my ways of reacting to things and determined that I should try a "dopamine reuptake inhibitor". Basically ADHD is about dopamine being poorly regulated in the brain, for a number of reasons. Your brain in proper function, has a stimulus responds with neurotransmitters (dopamine, serotonin, norepinephrine, epinephrine, histamine are all called monoamines but that is just one class) and then after a while it absorbs them so that the feeling passes. You want to stay scared/happy/sad ect then you need continued stimulus. Well I am bad at feeling happy, I am bad at getting things right with a normal amount of practice, I am clumsy... all of this points to dopamine specifically. It tells you good job when you get something right, it allows you to feel happy, it aids in coordination and not knocking into things because you get rewarded for not doing that and dodging.
But I DO feel these things, but just for fleeting moments. So I figured, that is probably the reuptake. I looked into what drugs are like that for ADHD and I found two candidates. I cant remember their names so lets call them chemX and chemY. Chem X had a cool sounding name but nothing else was remarkable about it. Chem Y is used in like everything and also lowers your blood pressure.
HERE IS THE BIG SECRET
Your doctor does not have an inexhaustible amount of time knowledge and research they have done about everything. They have to look shit up. Your research is probably just as valid as theirs. You have endometriosis and depo for 10 years. you have the motivation to look in vetted sources and come up with treatments and methods that you have spent 6+ hours finding and your doctor isnt interested in doing 6+ hours of research when the AMERICAN HEALTHCARE SYSTEM is telling them "look look look I know we officially say 20 mins, and we only give you 15, but if you could take only 10, you might actually get home on time tonight".
So just go a few steps backwards in your research, explain your well reasoned way you got there in a minute or less ( yes practice this part beforehand) and then sort of leave off before they get to the suggested solutions. They will look it up, see the solution as low hanging fruit RIGHT THERE and they will snag it.
I told my doctor about the dopamine reuptake inhibitors, I told him that they sounded right for me as a new classification of drugs to try, and I mentioned that my blood pressure was getting a bit high and that stimulants made that problem worse... so was there anything he could try with me... and low and behold the doctor found Chem Y the one that also lowers blood pressure!
He even had a smug grin on his face because he was proud of himself for solving the puzzle.
It is like the trick parents use with toddlers. if you pick an outfit and say "put this on!" they fight you the entire time. but if you lay out 2 outfits and say "which outfit would you like to wear today?!" they will jump at the option for the red shirt or the yellow shirt.
trick #2
STAY FOCUSED
You have a goal for going to the doctor.
Stay on target. My leg is broken.
"Hello doctor I am here about my broken leg."
"your blood pressure is a bit higher than I would like"
"after we talk about that we will talk about my leg?"
go along with whatever they want to do or talk about, be agreeable but keep bringing up that you came there for a reason, paid the copay for a reason and would like to have a resolution to that issue.
"I would like to see you lose some weight that should bring down your blood pressure and reduce the strain on your leg"
"Okay what steps are we going to take to reduce my weight?"
If they bring up **alternative health problems** They are usually a dismissal of the health problem you brought along to showcase. The doctor probably doesn't even realize nor believe that they are doing it. So the uno reverse card on this one is to ask them how to solve it. "yes I have tried diet and exercise and they did not have the desired results, so what else do you have to try?" If they have no suggestions for you then ask them to say that they had no suggestions to solve that issue in your chart. (we will come back to this)
Then when they are done with that ask what we are doing about the health problem itself. SO now they can fall back on the throw away solutions that they gave no actual pathways to, or an outright refusal to address your health concern. If they do either of these ask to have it noted in your chart.
At the end summarize the visit. Know the words prognosis diagnosis and treatment. I came in with leg pain, the prognosis is the 3 stairs I fell down and landed on my leg, the diagnosis is a minor fracture of the fibula and the treatment is a walking cast that I will go get at the pharmacy on my way home.
If you cant say all of that then go as far as you can and what you are doing about it. I cam in with leg pain, the prognosis is that I fell down 3 stairs, we suspect a diagnosis of a broken leg and we will confirm the diagnosis with an x-ray which is I will schedule on my way out at the front desk, and in the mean time I am prescribed a walking cast that I will get from the pharmacy on the way home.
If you cant go through steps like that or they just sort of stop somewhere it points out how unfinished the office visit is. I have told friends to bring in a notebook and write down these steps to keep it straight. Assure the doctor this is to help you keep it straight because you want to make sure you understand your own health and what you need to do. Write it all down, it isnt to keep tabs on the doctor that is what the state medical board is for, I just want to make sure I get the correct information down.
After the appointment when you go to the front desk, IF you had to ask that something gets noted in your medical chart THEN ask for a copy of your medical chart. Under HIPPA Federal statute 45 CFR § 164.524 you have "The Privacy Rule generally requires HIPAA covered entities (health plans and most health care providers) to provide individuals, upon request, with access to the protected health information (PHI) about them in one or more "designated record sets" maintained by or for the covered entity" So if you run into them not wanting to provide it just quote that at them and they should either comply or commit such a federal violation that you can go to the state medical board with your complaints then the media and watch your bank account explode with your litigation earnings.
Story time. I had a doctor and she was my new Primary Care Physician. I was trying to get an appointment to go see the ADHD specialist. I spent 8 months from first day picking up the phone and asking how I get ADHD meds to that appointment. At the appointment she REFUSED to acknowledge any mental health issues. I was there for a mental health referral and she acted like I had not said anything any time I brought it up. After the appointment I went to my car and cried. Then I took my evidence that showed that I was there for an ADHD referral, and my after visit summary that said nothing about any referral and I researched how to submit a complaint to my state medical board... and 6 months later I received a letter that that physician had their medical license revoked in my state. I thought I was just going to be a black mark on their record, I was stunned they got "you have to move to a new state" level of fucked.
So if you ask for something to be noted on your chart and they dont do it... turn their ass in and make them answer the question to an inquest. "was the patient aggressive at all? were they demanding? Did their request make sense? Did they seem threatening? Did they make any irrational demands? So why exactly did you fail to fail to note a failed prognosis on their chart? What treatment options did you give when the patient said the current regimen wasn't working?"
Defensive medicine is a dual edged sword. Make them spend company money lavishly on you and your problems. Take a hunk right out of the healthcare exe's yacht fund.
If it’s possible (with your finances, insurance, and region)… search for a social media group of people *in your area* with the issue you have (or think you might have). Eg “endometriosis Cleveland Ohio” or something. Yes this will probably lead you to Reddit or Facebook; you don’t need to use it beyond this resource, but static websites are just not as up to date or comprehensive. You want crowdsourced recommendations.
Look through the group for recommendation posts. There might be some pinned ones (the local Ehlers Danlos Facebook group I’m in is fantastically organized with specialist-specific recommendations threads all indexed in a pinned post), or you might have to search the group/forum for the kind of doctor you need. If all that fails, you can make a post asking for recommendations. But it probably already exists.
Go through the recommended specialists. Some will be warnings against them, some will be recommendations for them. Often people will provide additional details like “he’s great and helpful, but he is always 1-3 hours late so plan for that, and take copious notes because his chart notes are not helpful” (like one of the top recommended rheumatologists in my region. Who was indeed super helpful and thorough. And was 3 hours late to my first appointment). Useful guidance.
Then, if the specialist meets your various needs and insurance/financial requirements, go to a medical professional you’re already seeing and ask for a referral to that specialist. Or go directly to the specialist, if that’s an option (sometimes it is).
I have had so much success with this strategy (and I’ve had to see so many different specialists). Really minimizes the amount of M.Deity complexes you have to manage/work around.
(This especially applies to getting diagnosed with something complex/chronic/systemic, like Ehlers Danlos or MCAS or such. It won’t work to go to a general physician and ask what’s wrong with you. You have to figure out what you might have, then go directly to a specialist for that thing, in order to get fairly and competently assessed.)
