#syringomyelia

[genfagloser]

was looking at wheelchairs earlier today. idk if i can get one considering one of my disabilities requires staying as mobile as possible. the other one, however, has a chance of paralysing me, so i guess its a good idea to have something in mind if it comes to that

also my legs have been weak as fuck these past few days so its nice to know there r options if i end up needing em

#disability #cpunk #cripplepunk #ankylosing spondylitis #syringomyelia

[padawansuggest]

IT IS SYRINGOMYELIA AWARENESS MONTH APPARENTLY!!! A few facts about the condition for those of you that wanna know:

I do not have Chiari Malformation (which is where the skull is too short to hold the brain so that’s why the syrinx forms) which is the main cause of syringomyelia in both humans and animals. I am in the very rare percentage of an already extremely rare condition.

This is a degenerative/progressive condition that is almost impossible to recover from.

It is caused when there is a fluid filled cyst inside your spinal cord. This pushes nerves out in all directions which causes nerve… it’s not quite damage, but it acts like damage. My nerves translate most forms of heat and warmth as painful, as well as causing extreme bowel and bladder pain that feels like ants in my bowels and a lead balloon in my bladder. It’s very painful.

I have this cyst/syrinx (the term syrinx is the term for a cyst in your spine itself) in the exact same spot that my brother had several tumors, except his were on the outside of his brain stem/spinal cord, and mine inside. This means that his was operable, while mine can only be operable under very specific circumstances. We both see the same neurologist and he is very intrigued about how both our conditions were formed in-womb and legit looked like he wanted to study us when I first met him lol.

The operable conditions are when I have a 100% chance of going paralyzed because the conditions is pushing on the right nerves and they stop reacting entirely. The reason that this is the operable condition to remove the syrinx (which isn’t so much removing it as… popping it… which also means it can grow back…) is because that surgery itself has a 50% chance of paralysis as well. So, 50% chance of keeping from being paralyzed vs a 100% chance of being paralyzed, means that in that case the surgery wins.

I take gabapentin 4 times a day, every six hours, 100mg for every hour of the day. Gabapentin is a nerve medication that peaks in usage around 2-4 hours in, and after 6 hours it starts to leave your system. Which is why I went from 8 hours for 800mg to 6 hours for 600mg. Because the meds always wore off before I could take the next dose and left me in pain again.

Because of my condition I have degenerative muscles. I have a million things to fight here (top of which are a chronic fatigue and allergies that both get me down plus IBS if I eat something wrong oooof) but because of my conditions I can never hold a job outside of the house. I can barely attempt one in the house too. Im working on starting my own work with my preferred craft and my father supports me (in both love and finances but we live together so it’s not hard) because that’s probably gonna be the only way I have my own income in life. I work with fiber, wool mostly, making and using yarn. Mostly making. Mixing the fibers together on expensive equipment that i waited so long to save up for. I have a lot invested in it. It’s one of my special interests too, so it’s really nice to have that as work. Dad is disabled with special interests too, so he gets it.

Because of all of this, I’m actually in a program slightly more… intense, than PT. My town is a college town and in the college (the gym of which is DIRECTLY across the street from my apartment I’m super lucky with that) we have a program called Wellness Elevated. This is where you get a full semester’s access to the gym for the college/public (which is separated from the gym across the building which is for sports kids so there’s no fighting over room it’s smarter) where they give you a personal student trainer in the sports fitness program. These students are training to tailor a routine to each person’s needs. This program got me from low mobility and constant backaches to mid-low mobility. I can function and even leave the house at least half my days now. I’m even hoping to just. Go outside. During this summer. Bring a backpack with emergency meds and stuff and go to the park and stuff.

Sometimes (and I know this is connected cause other people with syringomyelia say this too) I have off days where I drop things CONSTANTLY. Like, there’s this weird ass signal in my brain that keeps opening my nerves or something. It’s strange and none of us know why it happens, but we all agree it’s like our brain isn’t sending the right signals that day. It’s wild. The muscles and such are fine, the hand just keeps opening to drop things.

I’m asexual and consider my libido to sort of be an annoyance more than anything. I am on several pills that destroy sex drive and that shit’s godly. Just wreck it I’m done, I’m bored, I’m over it. My pills are not for those that actively like and want sex. I am on so many pills and every new pill I get further from the norm and I love it. I know others hate it but I’m delighted not to be there anymore.

I also have autism, OCD, anxiety (which I was informed that OCD is an anxiety disorder itself which means that’s a given, and not that anxiety is a biproduct of OCD. Other way around.), ADHD, mysophonia, pica, and a few other scattered issues. I give the therapists my list, and they give me concerned looks.

Um. Idk what else. I have syringomyelia and this is a bit of what it’s like to be me.

#syringomyelia #actually disabled #syringomyelia awareness month #personal

[bitsnbobsboutique]

I’m very unwell right now and my brain isn’t working properly, but I wanted to share a sweater update. I’ve made it to sleeve island! Hopefully, I’ll get my nervous system managed so I can finish this before spring! I didn’t get to wear it this winter, but that’s ok. #disabledlife #disabledmodel #whereismymind #syringomyelia #syringomyeliawarrior #knitting #knit #juliessweater #knitwear #disabledknittersofinstagram #disabledknitter #knittersofinstagram https://www.instagram.com/p/CpMBTEhpDDz/?igshid=NGJjMDIxMWI=

#disabledlife #disabledmodel #whereismymind #syringomyelia #syringomyeliawarrior #knitting #knit #juliessweater #knitwear #disabledknittersofinstagram #disabledknitter #knittersofinstagram

[colorfulpeacewolf]

Dexter liebt seine adoptivkinder. Das ich mich hinlegen musste, weil mein kaputtes Genick einfach massiv ätzt..nutzen die Kätzchen gleich um sich auch hinzulegen. Ich suche immer noch nach #Kastrationpaten #kastrationspatengesucht #kuscheln #kittenoftheday #chronicillness #chronischkrank #arnoldchiarimalformation #syringomyelia #syrinx #tinitus #awareness #schmerz #friends #blogger_de #kastrationisttierschutz https://www.instagram.com/p/CmWo2fiNzbW/?igshid=NGJjMDIxMWI=

#kastrationpaten #kastrationspatengesucht #kuscheln #kittenoftheday #chronicillness #chronischkrank #arnoldchiarimalformation #syringomyelia #syrinx #tinitus #awareness #schmerz #friends #blogger_de #kastrationisttierschutz

[sentientsoup]

I don’t know how to be openly disabled when I’ve tried to hide it for so long, but I never knew how to be healthy either. I faked it okay, I guess, but it always came back to bite me in the ass.

#my disability story #disabled #zipperhead #syringomyelia #hydrocephalus

[plague-parade]

happy disability pride to all of my fucked up spine havers

happy disability pride to those of us who have spinal cord injuries, degenerative disc disease, ankylosing spondylitis, scoliosis, kyphosis, lordosis, spinal arthritis, cauda equina syndrome, tethered cord syndrome, spinal fusions, stenosis, myelopathy, radiculopathy, spondylolithesis, craniocervical instability, spina bifida, spinal tumors, syringomyelia, and anything else spine related

we are so very cool and i love you all so much

#disability pride month #disabled pride #disability pride #disabled pride month #cripplepunk #cripple punk #cpunk #actually disabled #physically disabled #disabled #disability #physical disability #spinal cord injury #SCI #degenerative disc disease #ankylosing spondylitis #scoliosis #kyphosis #lordosis #cauda equina syndrome #spinal fusion #stenosis #myelopathy #radiculopathy #spondylolisthesis #CCI #spina bifida #spinal tumor #syringomyelia

[fjordfolk]

HAPPY FRIDAY AND NEW CAVALIER OUTCROSS PROJECT 🎆🎂✨

swedish cavalier club's plan has been greenlit by skk and they're expecting to start this fall. goal is target syringomyelia and MMVD specifically and they'll be outcrossing to lhasa apso, japanese spitz, and danish-swedish farmdogs. the first three generations will be in skk's x-registry, the 4th may receive full registration.

#iirc the finnish project went green last year (?) #but im not sure they've selected outcross breeds yet #norwegian one i think was well in the works but i sus it stagnated right before the lawsuits started #and the lawsuit swiped the legs out from under it so #disappointing. think it had slowed in the breed club but they'd already gotten blessing from the KC + NKK

[leafsfromthevine]

hi tumblr if anyone can help, one of my best friends is in need of spinal surgery. if you can just share or donate a small amount it would help a lot!!! i have known them since kindergarten and they are a musician and super cool and i want them to live a comfortable and happy life!!! 🫶🫶

#not sure what to tag but! #if you see this any share helps :) #even just taking a look! #much love to anyone who sees #leaf op

[roseate-felidae]

Depression episodes and new tablet hell

So previously I was on a semi successful medication to manage my clinical depression. It worked mostly fine until my monthly hormone cycle messed it up and caused mental breakdowns.

These episodes happened twice weekly every damn month. So big problem.

During these breakdowns I tend to also try to make myself feel better by going with what usually makes me happy- my Autistic obsession.

This is my animals. Most of the time I am very happy with just my rabbits. But in my more Fragile state I tend to convince myself that there are better and more fulfilling options. My most recent one is the idea that dogs and cats are "superior" to rabbits.

Turns out that cats tend to have the same affectionate capacity as rabbits. That is to say that you get extremely friendly ones and then others that are more independent. So not a slight to either animal, rabbits are just very friendly if we'll socialized. So cats are not really "superior" at all.

Dogs on the other hand were a nightmare. The breeds I liked were very complicated. Cocker spaniels were too high energy and had separation anxiety. Cavalier king Charles spaniel has high rates of syringomyelia and are brachycephalic. Labradors I have experience with (my step mums pets) and are very clumsy, high energy and high shedding. I'm severely allergic to dogs aswell. So were just a bad descision overall.

But my main take away was that there was not even anything wrong with my pets and if I got a cat/dog tomorrow it would not solve anything. It's what I already get with my beloved buns anyway and my brain is just searching for a better solution to a thing that's not the problem to begin with (depression is).

I even tried internet dating, even though I tend to keep to myself and don't like company outside of family and online friends. I wasn't even lonely but was trying to "fix" non existent problems again to sort out depression.

So I get new tablets and think it's going to work.

It's been a month now and these fuckers had undone all my depression help I had previously with my last meds and not solved the damn anxiety I was put on it for it in the first place.

So now I need to talk to the doctor's tomorrow and hopefully be taken seriously this time.

You see I tried talking to them twice already and they first forgot to call me back and then never made time for an appointment the second time.

Boy do I love the chaotic mixture of depression, anxiety and autism. Also when doctors don't give a shit about doing their jobs.

TL: DR: new tablets I got to help with depression and anxiety have not helped me with said depression and anxiety. I am worse than I was before. Anxiety meltdowns trigger autism to "fix" non existent pet problems. Turns out unsurprisingly rabbit pets were fine and it's trying to make a big deal out of nothing.

#depression #anxiety #mental health

[silverior968]

Having a fucked up cerebellum that doesn't fit into your skull and requires a brain surgery / duraplasty has its perks, actually: I got to go watch FNAF with a friend and some snacks for free thanks to the finnish chiari and syringomyelia union. I really enjoyed the movie!

#not art #text post #Swearing #Well it's not free yet #I have to mail the receipts to the union #But oh my goodness I haven't had as much fun with a movie in so long! #Also: hello new followers this is my lore #I have type 1 chiari which used to have horrific symptoms and was slowly bending my brainstem #And also trying to give me a brain anneurysm #But! I had a brain surgery last january which was really painful #But now my symptoms are better and I no longer have a ticking timebomb in my head #And I'm part cow technically #Since they had to enlargen my skull with something they used a cow's cardiovascular tissue #I didn't get to keep the piece of my skull they took out </3 #And a year prior I had a probe in my skull which had to be drilled in #And it was removed when I was awake and unsedated #Also no painkillers #Best way I can describe the feeling is like rust #That's how it felt #Anyways Silverior968 lore recap is over #Cw medical procedures

[cripple-council]

do you have any advice on how to make a house more accessible? i dont use a wheelchair (yet) but i have early-stage syringomyelia and may end up needing one in the future. my parents live separately but both houses have a relatively large step up at the front door, neither house has bathroom rails, etc. no thought into accessibility at all. both houses are being rented and we live in australia. any advice from you or anyone else would be rly appreciated 💛 hope u have a good day/night!

- 🥀

i’m not sure how to adapt ur houses while renting and i have especially no knowledge about australia since im swedish. but in general ramps can help with the step/s, there are suction grab bars but they are not reliable since they can come off easily. try googling “how to make rentals accessible” or something similar to see if u can find anything. and i encourage ppl to give advice on this post, especially australians!

#ask #🥀

[genfagloser]

hellooo fellow people with syringomyelia, is it a bad idea for me to tip my head back to try to stretch my neck?? i did that just now and a spot in my spine where i think the syrinx is started hurting 😭

#syringomyelia #disability

[lesbianrobin]

hey hi, i wanted to ask you something (and sarah @steveharrington too!!) i respect you both a lot as writers and general opinionated individuals in this fandom so your opinion is important to me. i just read an otherwise wonderful fic, it was from dustin's pov. but at one point steve has to hold dustin back, and it has a line that says "he secures him with an arm over his collarbone" which is, Unfortunate. idk how they overlooked that but we all know dustin (and gaten for that matter) doesn't have any collarbones because of his cleidocranial dysplasia. which isn't merely "cosmetic", it's an skeletal disorder that can severely affect someone's life. fragile bones, respiratory issues, deafness, syringomyelia (fluid cysts that destroy your spinal cord), etc. my question is, should i contact this writer and kindly let them know they fucked up? or should i just stay quiet and appreciate this person's hard work writing something that is completely free?

hi! i appreciate your kind words about me and sarah and i just wanna say like totally use your own brain yknow don't put too much stock in me bc i am just some guy on the internet BUT here's my take: it's not that big of a deal and i would not criticize the author to their face over it.

i'm a disabled person and while i have a very different thing going on than gaten/dustin i think i still have like slightly more grounds to have an opinion on this than the average person? so yeah i think it's honestly not a big deal. it's kinda just a silly little mistake! a bit of a gaffe if you will. something of a goof.

dustin's cleidocranial dysplasia exists in the show but it's not a Super prominent part of his character and they never treat it as a big deal, and i would absolutely forgive the average viewer for not noticing or remembering. obviously fans who are writing fic tend to notice and recall more details like that than the average viewer, but unless the author actually said something in their note like "let me know if i made any mistakes!" or whatever i personally wouldn't mention it. if they wrote that dustin broke his collarbone, yeah, that's kind of a big oversight, but one single line that's just describing the place where steve put his arm one time isn't super important.

if you DO choose to reach out to them about it i would encourage you to be brief about the correction (ex: "by the way this is a small thing but dustin doesn't actually have collarbones bc of his cleidocranial dysplasia" and leave it at that) and accompany that criticism with something complimentary about the fic!!

anyway at the end of the day this is just my own opinion so like do whatever you think is right! just remember to be kind because this author definitely didn't make the slip-up out of any form of malice

#asks

[bitsnbobsboutique]

It’s Syringomyelia awareness month. It’s not breast cancer, and you can’t buy pretty pink things in support of the cause, but it can be just as deadly and devastating. We are here, trying to live as best as possible day by day, we could really use support and awareness. #syringomyeliaawareness #syringomyelia #syringomyeliawarrior #raredisease #rarediseaseawareness #invisibleillness https://www.instagram.com/p/CdLudy4rFT6/?igshid=NGJjMDIxMWI=

#syringomyeliaawareness #syringomyelia #syringomyeliawarrior #raredisease #rarediseaseawareness #invisibleillness

[colorfulpeacewolf]

Ich habe auf meinem Blog ein kleines Update zu meiner gesundheitlichen Situation gemacht. Wer sich dafür interessiert kann gern mal auf dem Blog stöbern. Ich frage mich allerdings wieso Insta alle meine persönlichen # gesperrt hat. Scheinbar hab ich immer noch genügend Hater hier. Link ist auf meiner Startseite. #katjasbauchladen #update #chronicillness #arnoldchiarimalformation #syringomyelia #syrinx #gesundheit #alltag https://www.instagram.com/p/CkWnx4gMB9g/?igshid=NGJjMDIxMWI=

#katjasbauchladen #update #chronicillness #arnoldchiarimalformation #syringomyelia #syrinx #gesundheit #alltag

[telltalerose]

.

got another fucking condition to add to my list lol. syringomyelia. fucking great. definitely what i need /s.

im so sick of being in pain im so sick of being in pain im so sick of being in pain i need it to stop. please. before it drives me fucking insane. i csnt handle it everything needs to just stop

#telltale vent #phys health rose #i guess #not tagging with thr condition bc there are like ten posts about it total