MS (suspected PPMS), fibromyalgia (?), hEDS, POTS, PCOS, some sort of autoimmune bullshit
crutch and wheelchair user
this'll be mainly cripple punk/disability stuff, but expect queer and poc related content as well
i dont really like doing DNI, but th!nspo/pr0ana blogs, trans-id/radqueers, and truscum/transmeds get an instant block. devotee blogs stop fucking following me that's also an instant block. i also support all good faith queer identities, including 'weird' or 'contradictory' labels. also i dont care about syscourse. just dont be shitty basically
minors can follow, just block the nsfw tag (i post very little of it, and it's always disability related)
common tags are on this post, lmk if u need anything tagged!
main: @mj-theskywitch
cane-you-dig-it -> smoov-criminal
ven and cash are both mjthehooman :3c
server for rare/underrepresented conditions
server for disabled people of color
[icon description: mirror selfie of maja, a black disabled person, in its wheelchair, doing a wheelie in one hand and holding its phone in the other. its wheelchair is black with red pushrims, spokes, and other details. maja is wearing a black pizza graphic t shirt, shorts with white paint flecks on it, black converse, pizza socks, and a beanie. it also has many chains and leather bracelets, a septum piercing, a tattoo on its leg, and red and black eye makeup. it has long black locs that are bleached on the ends, tinted pink. its smiling at the camera while holding the wheelie. /end ID]
[header description: a picture of the back of maja's vest with four patches, one large back patch with the bottom half visible, and three smaller ones below it. the first large one reads "thank you" in large red text, then "for the venom" under it, in the style of takeout bags. going left to right, the smaller ones read "limp wrist raised fist" "keep abortion legal" and "cripple punk". each patch has red embroidery around it, as does the bottom edge of the vest. /end id]
[userbox description: 1. a dark red userbox with medium-light grey bolded text and border. The image on the left is a black transparent male symbol, a black circle with an arrow pointing to the top right. The text is center-aligned and says “This user believes in transandrophobia”.
2. a userbox with the same formatting and color, this time on the left is a transparent black outline of a derby handle cane at a diagonal tilt with the handle in the top right corner. The text says “Don’t ask me if you’re crippled”. /end ID]
for the lovely lovely deafies out there who want to get involved in direct action you absolutely 100% cannot ever bring a hearing aid or cochlear implant with bluetooth to any direct action. bluetooth devices all carry a unique signal that can be used to identify you if it's picked up at a direct action. go with a [more] hearing buddy and communicate in sign language. if you don't mutually know a sign language then come up with gestures. do not risk your freedom because you want to have your hearing aid/cochlear implant at the action. it's not worth it.
flock cameras are also now tracking bluetooth device signatures when you pass them. if you drive past a flock camera with your bluetooth-enabled hearing aid or cochlear implant, the flock camera knows you passed through
Autism actually can make people violent and aggressive, and I’m tired of “autism advocates” saying it can’t. Many autistic people, especially higher support needs people lose control of their bodies during meltdowns and times of high emotion. Some autistics have limited control of their bodies at all times. This body brain disconnect is a prevalent associative feature of autism. This is not to say that measures shouldn’t be taken to protect and teach the autistic person and others, but you can’t erase real, but stigmatized parts of a condition, and then dare to call yourself an advocate. Just because a symptom is unpleasant or unpalatable doesn’t mean it’s not a genuine part of the disorder. Stop ‘cleansing’ your autism advocacy.
and when people acknowledge it they treat it as an Evil Boy Thing which. no. autistic girls (and autistic people considered girls by these sort of people) do it all the time you just don’t acknowledge their existence.
Corvid's guide to whether or not you should call an ambulance on someone in psychosis:
is there a medical emergency happening? (e.g someone is unconscious, someone has a dangerous wound, someone's face is drooping and they can't lift their arm (and this is unusual for them), someone has had a seizure (and this is unusual for them), someone has been hit by a car, someone is asking you to call an ambulance)
yes -> call an ambulance
no -> don't call an ambulance
it should be noted that talking to yourself, yelling, speaking with disorganized speech, having delusions, and hallucinating are NOT medical emergencies and do NOT warrant calling an ambulance on their own.
I CAN UPGRADE MY WHEELCHAIR GUYS HOLY SHIT. im gonna get the spinergy's ive been wanting for years, AND pneumatic tires, AND natural fit pushrims. the wheels, spokes and tires can be red and im extremely excited. it's also honestly less expensive than expected.
its going to be sooooo much easier to push and to lift into my car and EVERYTHING. i haven't been able to fully lock my chair in place with the wheel locks in ages because the tread on my tires is basically non-existent, so it literally can't grip the wheels hard enough to keep them in place.
im going to get new side guards as well because one of them has been broken for at least a year in a way where it presses against the wheel, so it makes me drift and still gets my clothes wet. theres a groove in it from the wheel constantly rubbing against it.
my chair is going to feel so so much better holy shit
This post is going to be information and some personal experience from me on gi motility disorders but specifically hypomotility for gastroparesis and digestive tract paralysis awareness month
Motility and hypomotility overall
Motility is the movement of food through the digestive tract which comes from a combination of nerves and muscles working together. Hypomotility means that it is moving slower and the muscle contractions that help the process have slowed or stopped. Motility disorder is an umbrella term for any disorder effecting motility
Esophageal dysmotility
There are multiple esophageal motility disorders they cause issues getting food from the mouth to stomach. A couple that can slow motility are achalasia and ineffective esophageal motility (IEM) . There’s various causes of esophageal motility disorders some being; neurological disorders, primary esophageal motility disorders, tumors, autoimmune diseases, and more. Symptoms include dysphagia (difficulty swallowing), odynophagia (pain while swallowing), feeling as if something is in the throat, acid reflux, and more. Treatment depends on what you have, for achalasia theres multiple procedures and for IEM theres dietary modifications and medication to control acid reflux. Feeding tubes are used in severe esophageal dysmotilty cases
I have ineffective esophageal motility with 70% of my swallows being fails most likely due to a neurological disorder (known to be neurological but not known what exactly it is yet). I deal with dysphagia and odynophagia, swallowing is almost always painful and hard. I have bad acid reflux and a near constant feeling of something in my throat. Often times i feel whatever i swallowed slowly falling down. I have an gj tube which has been helpful but was not placed for that, i am also on medicine for gerd and am going to see a dietitian
Stomach hypo motility (gastroparesis)
Gastroparesis is a disorder where food is not moved through the stomach correctly and slowly it causes symptoms like nausea and vomiting, stomach pain, loss of appetite, feeling full after a few bites and more. There’s also multiple causes for gastroparesis but diabetes is a common one, it can be idiopathic or caused by other things like neurological disorders. Treatment includes things like medication, dietary changes, procedures like the g-poem, enteral or parenteral nutrition and hydration
I have gastroparesis probably due to the same cause of my esophageal dysmotility. I deal with a lot of nausea and stomach pain and was throwing up every day for over a year. I couldn’t get enough nutrition or hydration and after failing medicine, diet, and 2 procures i now have an gj tube and am receiving iv fluids through peripheral ivs at an infusion center but am going to get a central line and start them at home but still do take medicine for it. I had frequent er trips due to complications of gastroparesis.
Small intestine hypomotility
It is harder to find things on small intestine hypomotility but it is a slow moving small intestine with symptoms overlapping with gastroparesis and colon dysmotility like nausea, bloating, pain, and more. It also can be caused by things like neurological disorders, autoimmune diseases, surgeries, and viruses. Small intestine hypomotility can sometimes cause small bowel bacterial overgrowth (SIBO). It was hard to find information on treatment but there is medicine and dietary changes and parenteral nutrition and hydration can be used.
I have small intestine dysmotility, again probably due to the neurological disorder, and it is definitely adding to my symptoms that experience with other motility disorders. I deal with a lot of bloating, nausea and intestinal cramps. I am on medicine for mine, do diet changes with what i do eat and my gj tube does help since its at a slower rate, my iv fluids also help since they bypass the digestive system but still hydrate me.
Colon hypomotility
Hypomotility of the colon (colonic inertia or slow transit constipation) causes a lot of issues with bowel movements like constipation and hard stools, it can also cause abdominal pain like cramps, nausea and vomiting, bloating, and more. Causes also consist of surgeries, neurological disorders, autoimmune diseases, ect. It can be treated with medicine and diet changes but also surgeries like a colectomy with or without an ostomy.
I have colonic dysmotilty as well from the same cause of my other dysmotility. I deal with a lot of issues from this including cramps that can stop me in my tracks and bloating. I use medicine and diet changes
Gallbladder dysmolity
Biliary dyskinesia is a disorder where the gallbladder does not empty correctly and moves bile out slowly, it is not always something patients with global dysmotilty have. It can lead to complications like gallstones and inflammation. The cause isn’t fully understood but some neurological disorders can cause it. Biliary dyskinesia causes symptoms like right upper quadrant pain that is intense but comes and goes and nausea and vomiting. It is usually treated by removing the gallbladder
I had biliary dyskinesia likely from ,you guessed it, the neurological disorder. I would have severe pain from it and it had lead to gallstones which lead inflammation in my gallbladder. Mine was taken out.
Global dysmotility
Global dysmotility is when it effects the whole GI tract. It is complex and leaves me needing surgeries like gallbladder removal, tube feeds, iv fluids, specific diet, multiple medicines and more.
Sources and more information
Abstract was not provided for this article.
Dysmotility is another term for a GI motility disorder — a problem with the muscle contractions in your GI tract. They may be too strong or
sorry im not shutting the fuck up about this. i just bought meal prep containers, bathroom storage, a new pillow, higher quality cat food; things ive been wanting/needing for a very long time but couldn't justify spending the money on. bruh
if your doctor is telling you that POTS can only be treated with salt, compression socks, and PT you either have an ignorant doctor or you are being medically neglected
there are so many medications available for POTS that stand in-between non-pharmaceutical options and saline infusions.
some people with POTS will tell you that a POTS diagnosis is not worth pursuing because "it can't be cured and your doctors will only suggest salt, compression socks, and PT"- this is not true. a POTS diagnosis opens up a world of possibilities for medication, infusions, assistive devices like mobility aids, and accommodations.
POTS may not be curable but many people experience relief from many (or all) of their symptoms when taking one (or several) of the many medications available to treat POTS.
POTS medications also do not begin and end at beta blockers. having a bad experience with a beta blocker (or several) does not mean that no medications will work for you. there are POTS medications that come from quite a few different classifications of medication. it's worth trying more out.
the best way to get access to these treatments is to find a doctor knowledgeable about POTS. these are few and far between and tend to have long waitlists. as long as you can get the diagnosis a primary care provider is able to prescribe these medications.
don't let bad doctors discourage you from seeking a diagnosis. there are things you can do to help!
today i am treating my partners to breakfast, getting some things from target ive been wanting for months, and going thrifting!!!
i am so unbelievably relieved. i can go to the store and buy pretty much whatever the fuck i want (not all the time obviously) and not agonize over if i can afford it or if i overspent. this is amazing
i think kids should be freely and easily be allowed to transition at low or zero cost and i want every public school to have gender neutral bathrooms and staff who know what being trans is and i want transition to not be as difficult as it is for kids.
facts about myalgic encephalomyelitis (ME/CFS) to combat the disinformation campaigns going on:
what does the name mean? my = muscle. algic = pain. encephalo = brain. myel = spinal cord. itis = inflammation.
ME is classed by the WHO as a neurological disease. the Decode ME study found immune and neurological genetic markers in its analysis of 15,000 subjects.
ME is more complex than just fatigue. many experts and patients dislike the old name ‘chronic fatigue syndrome’ because fatigue is only one part of the condition, and it’s the least unique trait.
the most unique trait is post exertional malaise, where, 24-72 hours after any exertion outside the patient’s limits, there’s a peak of worsening and new symptoms affecting multiple bodily systems. PEM often involves immune activation, such as sore throat and a low fever, and a loss of muscle recovery after exertion, measurable through CPET testing. (normal muscle recovery takes 200 mins, but muscle recovery in ME takes days, with some patients taking longer than a year to recover from a single exertion.)
ME can range from mild to profoundly severe. these severity levels are only within the context of ME, not general illness; ‘mild’ ME is still a severe illness as it includes a 50% loss of functioning. ‘mild’ ME can feature debilitating pain and complex symptoms and can turn basic activities of daily living into a marathon.
severe ME is (naturally) even more physically limiting than mild ME. people with severe ME are largely bedbound and only rarely able to leave their room in a wheelchair, and usually can’t perform their own care tasks, needing help dressing, washing, and eating.
in very severe ME, the person may be unable to leave bed at all and may not be able to speak, swallow, roll over, sit up, read, or be exposed to light or noise, for years or decades.
ME has a measurably lower quality of life than any other illness studied, including cancer and stroke.
finally, many of us can attest that exertion can cause years of deterioration and loss of functioning in ME patients. ive been 95% bedbound for the last decade bc of ONE WEEKEND where i walked too much when i was 15. im 26 now. and ive known so many people who went through something similar. do with this info what you will.
today, 8th august, is severe & very severe ME awareness day. it was chosen to honour sophia mirza who died of severe ME. please consider and remember us today 💗
shoutout to disabled people who aren’t exactly sure what their disability is, disabled people who aren’t diagnosed yet but know something’s off, and disabled people who are struggling but can’t get any help because of a lack of diagnosis, access to resources, or anything else. shoutout to disabled people who are silently and invisibly disabled and have a hard time getting people to believe them, and who have difficulty managing their symptoms because they’re not sure what the problem is stemming from. it’s hard, but i see you, and im so glad you’re here. it’s over-said but your experience is valid. you deserve support and to be believed.
Shout out to the people who are misdiagnosed. Shout out to the people who spent years getting the wrong treatments. The people who spent so much time trying to find an accurate diagnosis with countless doctors and tests.
what people dont get about the transmasculine experience is that transitioning often subjects us to MORE misogyny than before. after my family found out i was trans, they were MORE misogynistic to me. my gender presentation was more closely controlled. i was more closely controlled. i was screamed at for dressing tomboyishly. my breasts were suddenly a topic of discussion. i hadn't even mentioned medical transition, but i was told i was "ruining my [divine female] body" by... what, flattening my chest and wearing flannel? i was suddenly a source of embarrassment, the eldest daughter who refuses to conform to her role as a woman. i was forced into dresses that showed my cleavage and bare back, in middle school, which i was extremely open about not wanting to wear.
all of this is explained by a very simple fact, which has always been common knowledge in the transmasc community: they don't treat us like men just because we say we are.
can you guess what my favorite color is @smoov-criminal - Tumblr Blog | Tumgag
