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HOLY FUCK THE FEELS. THE CHILLS.Â
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So Iâm cleaning out my bookmarks and I figured Iâd share the medical info stuff I have bookmarked for future reference here in case anyone is interested. Theyâre kind of random but theres EDS, CCI, MCAS, and gastroparesis studies as well as a couple general illness links.
EDS:
Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations
Genetics Home Reference
EDS Info from Dr. Francomano
Clinical manifestations and diagnosis of Ehlers-Danlos syndromes
Cranio-cervical Instability/Tethered Cord Syndrome:Â
Google books-Â Atlas of Neurosurgical Techniques: Spine and Peripheral Nerves
Use of prone position magnetic resonance imaging for detecting the terminal filum in patients with occult tethered cord syndrome
Video lecture:Â Craniocervical Flexion Deformity in Hypermobility Syndrome: Diagnosis, Treatment and Two-Year Follow Up in 20 Patients with EDS
CSFÂ Educational Lecture Videos, By Topic
Gastroparesis:Â
Clinical Guideline: Management of Gastroparesis
Gastroparesis Diet
DIET INTERVENTION FOR GASTROPARESIS AND DIABETES MELLITUSÂ
MCAS:
Mast Cell Activation Syndrome: Proposed Diagnostic Criteria
Driscoll theory of MCAS in EDS
ok there is something that needs to be talked about
there is a lot of inter-community ableism between the mental illness community and the physically disabled community. as a member of both, it effects me directly.
more specifically its mentally ill people claiming that physical disabilities (including chronic illnesses) are treated better than mental illness, as if our disabilities or illnesses are taken more seriously than mental illness, or that people will more likely accept them as an excuse for something. but they arent treated like that, not at all.
stop acting like the world is more accessible for physically disabled than mentally ill people, its not accessible for either.
if ur physically abled and can reblog this you should tbh
PSA
There is a really, shitty hoax going around now that if you email Nintendo proof of your disability they will unlock âsecretâ disabled permissions for Pokemon Go.Â
Please stop sharing this rumor and shut it down when you are able to. And if you have reblogged this rumor, please take the time to reblog a correction.
Itâs an extremely mean-spirited response to disabled peopleâs disappointment that they canât play the game due to mobility (and other) issues.
Iâve reblogged my disbelief in this several times, but let me make it clear again that this is a shitty hoax and no one should believe it. Please reblog every denunciation of it you see.
I think the weirdest thing about chronic illness is hoping to get diagnosed with other illnesses, because maybe that will explain symptoms that your already-diagnosed illnesses donât quite explain, and maybe a new illness would have more treatment options that could possibly help you feel maybe a little bit or even a decent amount better.
Hi! A feminist facebook page I follow asked me to post something (a pic with text) about ableism, both about mental and physical chronic illnesses. Can you help me with that? I'm not sure what I can say that is short and simple. Thanks in advance!
Depending on your experiences and what you are comfortable talking about, you could talk about how being a woman makes you more likely to be misdiagnosed, not taken seriously, and/or mistreated by medical professionals. If you have any personal experience that youâre comfortable sharing maybe you can write about those to show how both misogyny and ableism together affect you and other disabled women.Â
If you canât think of anything youâd like to write about we have posts in our tagged/misogyny that could help you! Â
just a little post for my fellow teenagers/young adults who a) have physical mobility impairments and b) take public transit:
the accessible seats are for you
you donât have to be a âseniorâ to use them
they are not reserved for able-bodied children and/or adults to sit in. theyâre accessible so that people can maneuver mobility aids in and out of the space and/or not have to walk all the way down the length of a moving bus to be able to sit safely, which is important
unfortunately, social custom dictates that strollers also sometimes take up 3-4 of them at the time. in cases like these it is completely acceptable to ask someone sitting in a non-accessible seat to move
honestly: if at any time the accessible seats are taken up by other disabled passengers and/or senior citizens and/or people with strollers, it is absolutely okay to ask someone sitting in one of the non-accessible seats to move
even if the bus is full
(especially if the bus is full, sometimesâi know i have a much harder time balancing on transit when i canât lean against one of the walls for support, which is near-impossible when itâs packed ÂŻ\_(ă)_/ÂŻ )
those seats are there for you. itâs difficult to be assertive in these kinds of situations, especially since some people like to get a case of the ass about teenagers with mobility impairments. fuck those people. you deserve to be able to travel comfortably and safely; your age doesnât erase your need for accessible seating
a list of words you can use to describe your mental illness/disability, instead of cr*pple:
debilitate   *debilitating   *debilitated       âmy psychosis is really debilitating today.â
crush   *crushing   *crushed        âi experience crushing anxiety.â
enervate   *enervating   *enervated        âi suffer from enervating depression.â
enfeeble   *enfeebling   *enfeebled          âtoday is not a good day. Iâm enfeebled by my pd!â
indisposed   *indisposing (not an actual word according to autocorrect, use it anyway.)        âthis disorder / disability is very indisposing.â
impair   *impairing   *impaired        âiâm deeply impaired by my hallucinations today, so i canât do this.â
drain   *draining   *drained        âiâm feeling very drained / this disorder / disability is very draining.â
incapacitate   *incapacitating   *incapacitated        âi am absolutely incapacitated by my disorder / disabilityâ
devitalize   *devitalizing   *devitalized        âmy disorder / disability is very devitalizing today.â
feel free to add more!
the whole âonly reblog this if u have this specific disorderâ movement is the worst because literally no one disorder has a monopoly on any one symptom or even any COLLECTION of symptoms mental disorders arent actually tangible things theyâre names given to a collection of symptomsÂ
100%. Ppl act as if its somehow radical to reaffirm diagnoses as intrinsic parts of self, rather than as shorthand intended to describe clusters of symptoms and/or patient types and/or social groupsâie things imposed upon us by the powers that be, see: the misogyny inherent in cluster B pd diagnosis, the racialization of schizophrenia diagnosis, the existence of diagnoses like homosexuality or drapetomania, etc.. They exist to serve the psychiatric institution, not its patients
As early as the 1920s, researchers giving IQ tests to non-Westerners realized that any test of intelligence is strongly, if subtly, imbued with cultural biases⊠Samoans, when given a test requiring them to trace a route form point A to point B, often chose not the most direct route (the âcorrectâ answer), but rather the most aesthetically pleasing one. Australian aborigines find it difficult to understand why a friend would ask them to solve a difficult puzzle and not help them with it. Indeed, the assumption that one must provide answers alone, without assistance from those who are older and wiser, is a statement about the culture-bound view of intelligence. Certainly the smartest thing to do, when face with a difficult problem, is to seek the advice of more experienced relatives and friends!
Jonathan Marks - Anthropology and the Bell Curve (via villaines)
bad med mix- birth control
Antipsychotics, (especially lamotrigine) combined with the contraceptive pill and some antibiotics will interact, this includes acne medications - male doctors are especially bad at remembering to mention this.
This has a high risk of compromising your birth control.Â
Especially if you start to notice any spotting: stop taking the antibiotics (if it is safe to do so) and call your Doctor.Â
As an extra precaution, if something like this does happen, itâs probably worth using barrier protection as well til the end of the month Â
Sometimes GPs arenât as familiar as they should be with new generation anti-psychotic interactions or are simply too rushed to actually discuss a med change fully, itâs not fair for you to get caught out because of this.
[Image: Six images of disabled characters from recent media, they are: Symmetra from Overwatch; John Silver from Black Sails; Oliver Hampton from How To Get Away With Murder; Daniel from Bad Bad Thingsâ James âRhodeyâ Rhodes from Captain America: Civil War and Blind Al from Deadpool.]
Hello everyone, this July weâll be running disabilityfest again!
What is it?
Disabilityfest is a celebration of disabled characters across all media, we encourage everyone to make any contribution to it; art, videos, fics, gifs, meta, fanmixes, anything that you do!
Original characters and content are absolutely allowed as well as fanworks! And whilst the pictures above are of recent characters, your contributions donât have to be!
This covers all disabled characters, so physically disabled, developmentally disabled, mentally ill, chronically ill, d/Deaf, blind, significantly scarred and any other disabled characters are all welcome! Just tag it #disabilityfest and it will be reblogged to this blog!
When is it?
Weâll be running this from 1st of July until 31st of July but we want it to lead to people making more works about disabled characters all year round!
Guidelines, we wonât be too strict on them but if you can fit in with these that would be great:
Keep reading
How most people with invisible illnesses are treated by health care âprofessionalsâ
The Golden Girls didnât fuck around
pls watch
honestly i really appreciated this scene when I first saw it bc it took me like two years to get a diagnosis for whatâs wrong with me
Dorothy: Â Dr. Budd?
Dr. Budd: Â Yes?
Dorothy: Â You probably donât remember me, but you told me I wasnât sick. Â Do you remember? Â You told me I was just getting old.
Dr. Budd: Â Iâm sorry, I really donâtâ
Dorothy: Â Remember. Â Maybe youâre getting old. Â Thatâs a little joke. Â Well, I tell you, Dr. Budd, I really am sick. Â I have chronic fatigue syndrome. Â That is a real illness. Â You can check with the Center for Disease Control.
Dr. Budd: Â Huh. Â Well, Iâm sorry about that.
Dorothy: Â Well, Iâm glad! Â At least I know I have something.
Dr. Budd: Â Iâm sure. Â Well, nice seeing you.
Dorothy: Â Not so fast. Â There are some things I have to say. Â There are a lot of things that I have to say. Â Words canât express what I have to say. Â [tearing up] Â What I went through, what you put me throughâI canât do this in a restaurant.
Dr. Budd: Â Good!
Dorothy: Â But I will!
Dr. Buddâs date: Â Louis, who is this person?
Dr. Budd: Â Look, Missâ
Dorothy:  Sit.  I sat for you long enough.  Dr. Budd, I came to you sickâsick and scaredâand you dismissed me.  You didnât have the answer, and instead of saying âIâm sorry, I donât know whatâs wrong with you,â you made me feel crazy, like I had made it all up.  You dismissed me!  You made me feel like a child, a fool, a neurotic who was wasting your precious time.  Is that your caring profession?  Is that healing?  No one deserves that kind of treatment, Dr. Budd, no one.  I suspect had I been a man, I might have been taken a bit more seriously, and not told to go to a hairdresser.
Dr. Budd: Â Look, I am not going to sit here anymoreâ
Dr. Buddâs date: Â Shut up, Louis.
Dorothy: Â I donât know where you doctors lose your humanity, but you lose it. Â You know, if all of you, at the beginning of your careers, could get very sick and very scared for a while, youâd probably learn more from that than anything else. Â Youâd better start listening to your patients. Â They need to be heard. Â They need caring. Â They need compassion. Â They need attending to. Â You know, someday, Dr. Budd, youâre gonna be on the other side of the table, and as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me.
Reblogging for any of my mutuals whoâve ever dealt with Dr. Budd.
I used to love this show and I donât remember Dorothy having Cfs. Everything she says rings true
The Golden Girls was so ahead of its time in so many ways. Do yourselves all a favour and watch every last episode.
GO OFF DOROTHY!!!!
Iâve never seen this show, but good grief does this strike a chord with me. Iâm very impressed with the writers and the actress for having the guts to make such a strong comment on the way doctors treat invisible illnesses (especially in women or female presenting patients). You kick ass maâam.
Holy crap, why are we still dealing with this kind of bullshit DECADES later!?
I really needed this. The last doctor I went to kicked me out of her office because my âsmell offended herâ. Keep in mind I have POTS, Severe Depression, and everything that entails including having a very difficult time showering without blacking out. Iâd actually been quite proud of myself that day for managing it and for having the courage to trust a doctor again (many bad experiences, Iâm sure you all understand). I also had been sitting in a hot car while my boyfriend, who is my caregiver, had a job interview directly before my appointment.
Without even looking at my chart this doctor walked in and started basically telling me how disgusting I was. My boyfriend practically had to carry me out I was sobbing so hard. I never thought a doctor, who took an oath to heal, could treat another human being that way. I was wrong.
I remember when this episode aired. I was really young but I felt connected to it and I didnât know why. Years later, I do. This show was phenomenal. I canât sing its praises enough.
Never not reblog this.
Reminder to people on high dosage psych meds
especially anti-psychs and SNRIs, these meds increase your body temp and the more you take, the more it does that. You are NOT just âfeeling the heatâ if you start to feel like you have sunstroke this Summer. You will most likely get it before anyone else so treat yourself as you would treat a small child. Ensure that you stay hydrated and keep an eye on yourself!
I had to remind myself of this because Iâve been feeling the heat a LOT since my dosage was increased and it can actually lead to your meds fucking up/you getting really sick!
Be good to yourself, stay cool!
ETA: People demanding sources.
And be careful because often the full effects of the sun on you donât show up until later! I once had my body swell up hours after being out and it was horrible. If youâre on antipsychotics especially please stay hydrated, wear sunscreen, and try to stay in the shade!
summertime sensory suggestions
take off your shoes and touch the warm asphalt with your bare feet. feel small stones, or patches of dirt or sand with your feet. feel how different they are in texture and temperature. (take sandals with you. asphalt can get very hot and burn the soles of your feet!)
sit in the sun and let your skin warm up. touch your very warm skin. (remember to use sunscreen if you get sunburns easily.)
watch the sunlight sparkle on a water surface, like a lake, river, a bowl of water or the water jet from a faucet.
go outside or open the window after heavy rainfall. enjoy the cool, fresh, clean air. experience how it smells and feels different from before.
go outside and find different plants to smell. not only flowers and blossoms smell good, many green plant parts also have interesting scents, especially if you rub them between your fingers. (watch out for poisonous plants. to be safe, donât put your fingers in your mouth after touching strange plants.)
go to a lawn and run your feet or fingers through the grass. feel the single grass blades. find clovers or daisies or other small plants.Â
find a nice, sturdy tree and hug it as firm as you like. feel the texture of the bark and the pressure of your hug.
find a branch with leaves. break it off if you like. wave it around. feel the resistance. listen to the rustle of the leaves. feel and listen to the swish swish swish.
find interesting or pretty insects. watch them do their thing. watch them move their tiny little legs or wings.Â
find a friendly cat or dog or other furry animal that is chilling in the sun. touch its warm fur. feel how soft or coarse it is and how the sunlight has warmed it up. watch the sun glisten on the fur.
go outside during rainfall. let the rain soak your clothes and your skin. listen to the sound of the raindrops and the wind. watch the raindrops fall. wear glasses, sunglasses or goggles to protect your eyes if you like.
open the window during rainfall. feel the wind brush your face. listen to the rain. stick your hand out the window and catch a few drops. smell them.
get a small mirror or a watch or something else with a small reflective surface. catch the reflection of the sunlight, point it at a surface or at objects. play with it. paint patterns. see how far you can move it around.Â
when the sky is clear or clear with few clouds, sit outside or at a window with a good view to watch the sunrise or sunset. watch the whole thing, either from dawn until the sun is up, or from when the sun gets red until itâs completely gone. listen to the wind, the birds and the other noises of the outside. feel the air change temperature. watch the sky change colour.
go outside and find different plants. touch them. feel how rough or slick the branches and trunks are. feel how delicately textured the leaves are. feel how soft the petals are. feel how pointy thorns and edges are. collect pretty or interesting parts. (again, watch out for poisonous plants. donât put anything in your mouth or on your lips if you donât know what it is.)
find a grassy hill that you can roll down. do it. get dirty. make noises. roll around in the grass. explore the slope.
find a tree that you can climb. look down. play with the branches and the leaves. have a picnic in the tree.Â
for cooling down:
(please note that cooling down is nice, but stop as soon as you start to get uncomfortably cold! listen to your body.)
play with the jet of a garden hose or a sprinkler. watch the drops, see if they form a rainbow. jump in. get wet. listen to the hiss and sputter of the water.
take a bucket of cool or even ice-cold water, depending on your preferences. put your feet in the water. splash it a little. let your feet soak and cool down.
take a cool or cold shower. donât dry yourself off. let your body air-dry.
get an ice pack or a refrigerated water bottle. hold it to your wrists, the inside of your thighs, your neck or your upper belly, where the veins are. feel how it cools your blood and how your whole body gets cooler.
splash your hands and arms with water. move them around, or spin really fast. feel the water evaporate in the wind of your movement and how it cools your skin in the process.
soak a shirt with water and wring it out a bit if you like. taking it directly out of the washing machine works too. put it on while it is still wet. feel it cool your body. let it dry on your body.
soak your face or hair with water or put on a wet cap, then stand in the wind or in front of a fan, or fan yourself with a sheet of paper or cardboard. feel your head cool down.
take an ice cube in your mouth. feel how it cools your tongue. feel how the ice water cools your throat as you swallow it.
find a patch of cool floor, either inside the house or outside. lie down. relax. feel how your body cools down. take a book or your phone with you if you like. stay as long as you want.
also if ur like âpeople who dissociate donât know theyâre dissociating if you know youâre dissociating youâre having a panic attack or a LIARâ
youâre legitimately wrong
a lot of psych textbooks say that im sure but a great deal of people who dissociate often enough can tell during it or in hindsight. if you experience it enough those sensations become easy to read lmao, if you think youâre floating out of your body each time youâll eventually say âhey Iâm floating out of my body so Iâm dissociatingâ like. :/
itâs the same idea as âppl who hallucinate donât realize theyâre hallucinating!â a lot of us do???? for example itâs kind of easy to tell that the man is a hallucination because seven foot emaciated nose less being with arms to their knees, holes for eyes, and gaping empty mouths donât existâŠlike some ppl donât realize theyâre hallucinating but plenty of them do
itâs a very common misconception to believe that ppl who are âcrazyâ canât tell they are
Yeah, itâs like this with paranoid delusions. Iâll be utterly convinced that my boyfriend isnât real and everybody is just playing along with me as I talk to my fake boyfriend, or something like that, but then Iâll consciously realize that the delusion is ridiculous and unreal. It doesnât make the delusion go away, but it helps me cope with it until I can grab a smoke and calm the fuck down. Protip: People with mental illnesses are often really fucking competent at dealing with those mental illnesses. Theyâve had to do so their entire lives.
itâs all variants on the TOTAL LIE that âcrazy people donât know theyâre crazyâ which is the dumbest thing I have ever heard, like the corollary is that if you know somethingâs wrong with you then nothingâs wrong with you? no thatâs not how this works.