river’s spoonie page yay

posting about ceds, pots, chronic pain, cerebral palsy, chiari, craniocervical issues and suspected mcas. mallrats themed because a bitch loves view askew

[spooniebrodiebruce]

a little intro!

parts that must be read fully before following are marked with a 💖 at the beginning!

💖 so this is just a little spoonie sideblog. we know it won’t appeal to view askew fans however we chose the theme anyway haha. don’t expect fandom content here! our view askew fanpage is happyscrappy-heropup37, follow that for fandom content!

alters will often sign posts in tags, look for a tag like “posted by alex” for example as all signoff tags will say “posted by [alter]”

💖 topics this blog covers:

hctds overall, we have ceds but will still tag as ehlers danlos syndrome, ceds, heds, and hsd for broader outreach/similar symptoms, pots, cerebral palsy (we have ataxic but will post using both the ataxic cerebral palsy and just plain “cerebral palsy” tags) chiari malformation type 1, craniocervical instability, and our potential mcas

💖 we have no interaction stances, you can interact if you’re pro contradictory/good faith labels, anti contradictory/good faith labels, pro endo, anti endo, you can interact regardless of stance. if you’re not harassing us, we don’t care, and only block people for harassment (that includes people who harass others instead of us)

you can also repost without asking. and there’s no age limit on who can interact!

also before you go- check out our main @rivers-yap-session

[memories]

Legend has it if you put any good tag in the title of your favorite car movie, it sounds canon. The #elias grover and the Furious.

[memories]

You ever just... yell about #ceds??

[spooniebrodiebruce]

ALL THE TIME MAN having it sucks so bad

[spooniebrodiebruce]

i am going to say this as loud as i can:

HSD IS JUST AS SEVERE AS EDS. G-HSD IS VERY SIMILAR TO EDS. HSD CAN BE JUST AS DISABLING AS EDS, AND HSD IS NOT “JUST BENDY WITH A LITTLE PROBLEMS”

g-hsd and heds have almost identical chronic pain rates, systemic issues etc. a common misconception is hsd is “just eds without the systemic issues” but actually hsd is a diagnosis of exclusion when someone is hypermobile, has systemic issues (pots, mcas, chiari, skin hyperextensibility, heart issues, hernias etc) but misses one or more boxes on the diagnostic checklist. you can have 4 symptoms from the 12 symptom list in the heds criteria but if you don’t have pain that fits the narrow criteria for heds or frank joint instability they think is necessary for a heds diagnosis you’re diagnosed with HSD. so basically you could have severe chronic pain (just not in the places they what for the heds criteria,) stretchy skin, a history of hernias and velvety skin… but because you missed just one more symptom and don’t pass criterion c you ended up with an HSD diagnosis yet those symptoms are similar to EDS. you can take two people, one with heds and the other with g-hsd, and the person with hsd could have worse symptoms than the person with heds but take two people, one with heds and the other with hsd and the other person with heds could have worse symptoms than the previous person with heds, and the person with hsd could have less or b milder symptoms than the previous person with hsd. some people with hsd have it worse than some with heds and some people with eds have it worse than some people with hsd.

i know this is a major ass tldr but it had to be said, people act like hsd is “the athletes condition” or “mild” when it’s actually a serious condition. i don’t have hsd i have eds but a lot of people are pricks about this sorta thing so i posted it. stop minimizing hsd folks 👏

[angel-fruitcake]

i can handle one (1) Event™ per day. whether it be a phone call, an appointment, trip to the grocery store, play date with a friend, etc. only one, that's it. any more than that and i am Stressed

[killxbunnyyy]

Hey sorry if I’m kinda weird I was supposed to be dead by now

[spooniebrodiebruce]

constantly moving my arm around to try to adjust the elbow that keeps subluxing how it hurts so bad 🥲 but it’s still subluxing so i still have to keep flexing it up and down to get the bones where they feel Just Right

maybe my joints do cause me more issues than i thought and im just dissociated from them/too dissociative to tell

[spooniebrodiebruce]

oh so you’re telling me the red freckle looking patches that cover my entire legs are bursted blood vessels because their collagen is too fragile. okay

[spooniebrodiebruce]

*sits on my feet on a tile floor*

*gets bruises that look like someone punched my knees*

i mean i bruise without even getting hurt my body just gifts me with random bruises but like come on man

[spooniebrodiebruce]

can mildly/invsibly disabled people please tone it tf down a little? like yeah, i know, you think seeing someone with cerebral palsy in a wheelchair when you have cerebral palsy too and can walk just fine, a person with hsd who has a cane or knee scooter, while you don’t need aids but have hsd is getting better treatment than you but i got news for you you’re wrong! people are gonna shit on disabled people no matter what, whether the disability is invisible or visible, nobody has it easy and no side is greener than the other. both sides have life altering shit to deal with. like sure i get it. wanting to know you’re really disabled and not just making it up as an excuse to be lazy or to be sooo marginalized for the “extra benefits.” i’m mildy/invisibly disabled too, i deal w the impostor syndrome because i only have joint pain upon physical exertion, hyperextension and subluxes, i wonder if im “just normally bendy” since i only have skin issues and mild, manageable hypermobility that doesnt get in the way of daily life, my cerebral palsy isn’t severe enough to cause full body stiffness or need a wheelchair but fuck it guys needing mobility aids is my worst nightmare. that extra sense of validity isn’t worth your freedom being taken away by being unable to walk without pain or falling, having to depend on an aid that people give you salty looks for or say you’re too young for, that looks ugly and bulky and even stickers don’t really help it. literally having a target on my back along with the loss of freedom is my WORST fear. be normal and chill yall

[happyscrappy-heropup37]

gonna make a mallrats themed spoonie blog to declutter my fanpage from my chronic illness posts + don’t see many mallrats themed accounts so why not

[spooniebrodiebruce]

it’s @spooniebrodiebruce for those who want to follow!