#Medical Disorders
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Update on Eye-Brain-Fuckery (March 5th)
I have Trigeminal neuralgia, itâs the nonsense best fit diagnosis my doctors and I have settled on since original symptoms happened in 2020 or so. Essentially, left side of my face hurt, ear go ringggggg and sometimes I get a little wobbly. New flairs now extend into my eye socket, with visual disturbances (colour flashes) and some peripheral vision issues.
Sunday while at work (I work at a hospital) I had a flair around noon where face hurt extra. Then apparently over a course of an hour I got a little more grouchy and my coworkers (nurses) got Very Alarmed until they informed me my eyes were very incorrect. I checked and lo and behold, anisocoria. This normally is due to pressure in the brain, like from stroke, brain injury, brain bleed, ecetera. Iâve had this happen before but normally only for a few hours. 6 hours later I talk with some nurses who are very alarmed it hasnât ended yet. After 8 hours I head into my hospitalâs emergency room because best case: at least I have a documented flair, worst case: huh maybe there is a brain bleed this time
So, Iâm there for HOURS, bored AF. I get a CT scan and it comes back clear. My Ocular nerve IS intact and working, but my pupil is having absolutely no reaction. With this normally there is some sort of movement in your eye- but with mine it was completely absent. So Iâm there for hours, and doctors send me home Bc they canât find anything wrong
I go to my neurologist the next day after about 24 hours of this because my eye is still not reacting. My neurologist instantly sends me to a different hospital emergency room, this hospital specializing in neurological injury, surgery, and rehab. I get there, and am checked out after now like, 30 hours of this nonsense. I get ANOTHER scan. Eye still not responding.
Although? For an unknown reason my iris IS somehow recovering and my pupil is shrinking. No response. Scans come back perfectly clear, they cannot find anything wrong with me. They send all the medical students to my room to check out my funky eye.
So I wake up today (Tuesday) and my eye is still funky. Itâs starting to barely react to light, but itâs going down. No idea what is happening to me.
All of this being said, the left side of my face has been in what I call a âflairâ of my Trigeminal neuralgia. It feels like Iâve gotten stabbed at multiple individual spots on my face, with my ear either crackling oddly before very loud tinnitus or sudden vertigo. It happen, but this is without any doubt the longest itâs lasted.
It is currently 7:30pm Tuesday so approximately 54 hours after onset, and still having pain and problems. I love being âso quirkyâ (last pic I took on tumblr camera which apparently flips you huh fun fact)
UPDATE: it is now March 22, face hurt syndrome still hurt. Eye is back to normal. More medications have been piled on me and by god it is insane. Here is hoping more testing will figure this shit out.
#medical#medical update#trigeminal neuralgia#neuralgiac#human anatomy#medical disorders#neurological disorder#who fucking knows#migraine#headache
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Metabolic syndrome is a complex and potentially life-threatening condition that can significantly impact an individualâs health. Therefore, it is crucial for patients of family practice in Linwood NJ to understand its risks and take proactive measures to manage and prevent it.
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my chronically ill best friend just said "I feel like the side effects part of a medication commercial" SO FUCKING TRUE BABE
#we have the same medical condition#pots#potsie#pots syndrome#chronic nausea#chronic joint pain#chronically ill#chronic fatigue syndrome#chronic illness#chronic pain#chronic fatigue#spoonie#invisible disability#disabled#actually disabled#gastroparesis#hypermobile ehlers danlos#ehlers danlos syndrome#hypermobility spectrum disorder#hypermobile eds#hypermobility#wheelchair#wheelchair user#mobility aid#cripple punk#cripplepunk
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Medical cannabis can only be administered if the patient has a current written certification from a board-registered practitioner. Medical marijuana certifications in Virginia are only valid for one year. Thus, if your certificate is set to expire, you must submit for cannabis certificate renewal in Virginia. Is this, however, necessary? Yes! But why is this so?
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PURE BITTER ALMOND OIL
Almond oil absorbs fast into our skin, making it a potent and efficient moisturizer. It is a light oil that does not leave a greasy aftertaste. It is high in Vitamin E, a potent antioxidant that promotes healthy skin and collagen synthesis. It also included a natural SPF of 5, which is said to be healthful and helps protect the skin and scalp from sun damage. Organic Bitter almond oil is extensively used in the components of hair products because it helps to strengthen the hair and improves its shine of the hair, therefore almond oil is commonly used as a hair conditioner or hair tonic. It has antispasmodic qualities and is used to treat medical disorders such as spasms, discomfort, and cramping.
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Story from the Washington Post here, non-paywall version here.
Washington Post stop blocking linksharing and shit challenge.
"The young woman was catatonic, stuck at the nursesâ station â unmoving, unblinking and unknowing of where or who she was.
Her name was April Burrell.
Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.
April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality.
âShe was the first person I ever saw as a patient,â said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. âShe is, to this day, the sickest patient Iâve ever seen.â ...
It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries...
Markx and his colleagues discovered that although Aprilâs illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.
After months of targeted treatments [for lupus] â and more than two decades trapped in her mind â April woke up.
The awakening of April â and the successful treatment of other people with similar conditions â now stand to transform care for some of psychiatryâs sickest patients, many of whom are languishing in mental institutions.
Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery.
And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.
Although the current research probably will help only a small subset of patients, the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated.
âThese are the forgotten souls,â said Markx. âWeâre not just improving the lives of these people, but weâre bringing them back from a place that I didnât think they could come back from.â ...
Waking up after two decades
The medical team set to work counteracting Aprilâs rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus...
The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvement almost immediately...
A joyful reunion
âIâve always wanted my sister to get back to who she was,â Guy Burrell said.
In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center...
Because of visiting restrictions related to covid, the familyâs face-to-face reunion with April was delayed until last year. Aprilâs brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous.
âWhen she came in there, you wouldâve thought she was a brand-new person,â Guy Burrell said. âShe knew all of us, remembered different stuff from back when she was a child.â ...
The family felt as if theyâd witnessed a miracle.
âShe was hugging me, she was holding my hand,â Guy Burrell said. âYou might as well have thrown a parade because we were so happy, because we hadnât seen her like that in, like, forever.â
âIt was like she came home,â Markx said. âWe never thought that was possible.â
...After Aprilâs unexpected recovery, the medical team put out an alert to the hospital system to identify any patients with antibody markers for autoimmune disease. A few months later, Anca Askanase, a rheumatologist and director of the Columbia Lupus Center,who had been on Aprilâs treatment team, approached Markx. âI think we found our girl,â she said.
Bringing back Devine
When Devine Cruz was 9, she began to hear voices. At first, the voices fought with one another. But as she grew older, the voices would talk about her, [and over the years, things got worse].
For more than a decade, the young woman moved in and out of hospitals for treatment. Her symptoms included visual and auditory hallucinations, as well as delusions that prevented her from living a normal life.
Devine was eventually diagnosed with schizoaffective disorder, which can result in symptoms of both schizophrenia and bipolar disorder. She also was diagnosed with intellectual disability.
She was on a laundry list of drugs â two antipsychotic medications, lithium, clonazepam, Ativan and benztropine â that came with a litany of side effects but didnât resolve all her symptoms...
She also had lupus, which she had been diagnosed with when she was about 14, although doctors had never made a connection between the disease and her mental health...
Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior. By October, there were already dramatic signs of improvement.
âShe was like âYeah, I gotta go,ââ Markx said. ââLike, Iâve been missing out.ââ
After several treatments, Devine began developing awareness that the voices in her head were different from real voices, a sign that she was reconnecting with reality. She finished her sixth and final round of infusions in January.
In March, she was well enough to meet with a reporter. âI feel like Iâm already better,â Devine said during a conversation in Markxâs office at the New York State Psychiatric Institute, where she was treated. âI feel myself being a person that I was supposed to be my whole entire life.â ...
Her recovery is remarkable for several reasons, her doctors said. The voices and visions have stopped. And she no longer meets the diagnostic criteria for either schizoaffective disorder or intellectual disability, Markx said...
Today, Devine lives with her mother and is leading a more active and engaged life. She helps her mother cook, goes to the grocery store and navigates public transportation to keep her appointments. She is even babysitting her siblingsâ young children â listening to music, taking them to the park or watching âFrozen 2â â responsibilities her family never would have entrusted her with before her recovery.
Expanding the search for more patients
While it is likely that only a subset of people diagnosed with schizophrenia and psychotic disorders have an underlying autoimmune condition, Markx and other doctors believe there are probably many more patients whose psychiatric conditions are caused or exacerbated by autoimmune issues...
The cases of April and Devine also helped inspire the development of the SNF Center for Precision Psychiatry and Mental Health at Columbia, which was named for the Stavros Niarchos Foundation, which awarded it a $75 million grant in April. The goal of the center is to develop new treatments based on specific genetic and autoimmune causes of psychiatric illness, said Joseph Gogos, co-director of the SNF Center.
Markx said he has begun care and treatment on about 40 patients since the SNF Center opened. The SNF Center is working with the New York State Office of Mental Health, which oversees one of the largest public mental health systems in America, to conduct whole genome sequencing and autoimmunity screening on inpatients at long-term facilities.
For âthe most disabled, the sickest of the sick, even if we can help just a small fraction of them, by doing these detailed analyses, thatâs worth something,â said Thomas Smith, chief medical officer for the New York State Office of Mental Health. âYouâre helping save someoneâs life, get them out of the hospital, have them live in the community, go home.â
Discussions are underway to extend the search to the 20,000 outpatients in the New York state system as well. Serious psychiatric disorders, like schizophrenia, are more likely to be undertreated in underprivileged groups. And autoimmune disorders like lupus disproportionately affect women and people of color with more severity.
Changing psychiatric care
How many people ultimately will be helped by the research remains a subject of debate in the scientific community. But the research has spurred excitement about the potential to better understand what is going on in the brain during serious mental illness...
Emerging research has implicated inflammation and immunological dysfunction as potential players in a variety of neuropsychiatric conditions, including schizophrenia, depression and autism.
âIt opens new treatment possibilities to patients that used to be treated very differently,â said Ludger Tebartz van Elst, a professor of psychiatry and psychotherapy at University Medical Clinic Freiburg in Germany.
In one study, published last year in Molecular Psychiatry, Tebartz van Elst and his colleagues identified 91 psychiatric patients with suspected autoimmune diseases, and reported that immunotherapies benefited the majority of them.
Belinda Lennox, head of the psychiatry department at the University of Oxford, is enrolling patients in clinical trials to test the effectiveness of immunotherapy for autoimmune psychosis patients.
As a result of the research, screenings for immunological markers in psychotic patients are already routine in Germany, where psychiatrists regularly collect samples from cerebrospinal fluid.
Markx is also doing similar screening with his patients. He believes highly sensitive and inexpensive blood tests to detect different antibodies should become part of the standard screening protocol for psychosis.
Also on the horizon: more targeted immunotherapy rather than current âsledgehammer approachesâ that suppress the immune system on a broad level, said George Yancopoulos, the co-founder and president of the pharmaceutical company Regeneron.
âI think weâre at the dawn of a new era. This is just the beginning,â said Yancopoulos."
-via The Washington Post, June 1, 2023
#mental illness#schizophrenia#schizoaffective#psychotic disorders#psychology#neurology#autoimmune#autoimmine disease#neuroscience#medical news#medical research#catatonia#immunotherapy#immune system#clinical trials#good news#hope
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Here's a reminder to fight the internalized sanism/ableism in your head.
If you have executive dysfunction, don't compare your productivity to people who don't.
If you have anhedonia, don't compare your struggling to keep up with hobbies to someone who doesn't.
If you have paranoia, don't think of your fears as any less valid than the fears of someone who doesn't.
If your meds make you tired constantly, don't compare your energy levels to someone who doesn't take those meds.
If you have issues with concentration, then you won't be able to pay attention as well as someone who doesn't.
If you're in the deep end of a pool, then you can't compare how well you keep your head above water to someone who is standing in a kiddie pool.
Please try to think of these things when you feel "lazy" or "childish" or "a failure" compared to other people that don't struggle with the same symptoms as you. If you have a mental illness that will affect how you act in everyday situations, then it will in fact affect you in everyday situations. It's not an excuse, it's just a reality. We need to try to be kinder to ourselves.
#mental illness#mental health awarness#mental health reminders#neurodivergent community#neurodivergent#neurodivergency#schizophrenic#schizophrenia#schizoaffective disorder#executive dysfunction#anhedonia#paranoia#tw medication side effects#concentration issues
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Hey friends, just a reminder as we head into October and sunlight lessens that Seasonal Affective Disorder (SAD) is a very real thing!
If you feel like you're miserable or moody for no particular reason, you may not be getting enough sunlight/vitamin D!
I love y'all, be kind to yourselves and listen to your bodies!
#october#autumn#fall#seasonal#spooky season#self care#health#mental health#seasonal affective disorder#Sad#medical#sunlight#Daylight
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neurotypical people will be like "yeah loud noises bother me too" and meanwhile i once had to sit in a closet clutching a pillow sob-rocking for 2.5 hours because a fire alarm went off for a few seconds
#this is an extreme example but it says something i think#actuallyautistic#yes many of the sensory issues that bother me are also mildly annoying to other people#the issue is that's what a mild annoyance to you is a cause of pain and extreme distress to me#it's a medical issue that can disrupt my entire day and ability to function--at which point i get told i'm 'overreacting'#and listen that is not how sensory processing disorder works#it's not ME overreacting it's my sympathetic and parasympathetic nervous systems malfunctioning on a biological level#and buddy you are WELCOME to try arguing with them but i personally have spent years not getting results from that#they are Stubborn and they do not give a Damn what you have to say
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are we on the cusp of a breakthrough in endometriosis?
#tiktok#endometriosis#the guardian#health news#auto immune disease#autoimmine disease#auto immune disorder#immune system#immunology#science news#medical studies#medical news#medical history#misogny
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Harm Reduction Ideas for Substance Use Disorder
Recently I have been listening to a podcast called The Curbsiders Addiction Medicine. If you are a clinician that works even sometimes with people who use substances (every clinician ever), it is a fantastic look at all the harm reduction practices you can use to make these individuals safer. Plus, you get free CME.
Iâm hardly going to do the podcast itself justice with this post, but I wanted to share some things I learned from it:
If the dangers of using substances (social and legal consequences, time commitment, health problems, money problems, etcâŚ) was a deterrent, people wouldnât be doing it. But itâs not. Because uncontrolled substance use is a chronic disease that generally does not get better without treatment. When people are treated, not only do they generally use less, but they have a much lower chance of death and a much higher chance of a happy, productive life- whatever that means for the patient.
Previously (even a few years ago) we hung such treatment on the requirement that people be abstinent from substances in order to receive help. This works for some people, but far from everyone.
The evidence shows that best thing we can do for many individuals is to make their use safer and less of a burden on their life and health. This is called harm reduction, and it WORKS.
Here are some evidence-based ideas for how to help your patients:
Create a space where you are working together with your patient and following your patientâs lead. Do they want to become abstinent? Great! Do they want to use less or use in a more controlled way? Also great! Do they want to continue use in a safer way? You guessed it, also great! Support them in whatever their goal is
Provide or prescribe safe, clean tools of use. Things like clean needles, Pyrex pipes, and straws. This decreases rates of infection and abscesses
Prescribe medications that reduce cravings or reduce/eliminate withdrawal (methadone, buprenorphine, topiramate, bupropion, naltrexone) without requiring abstinence
Teach people safer use practices and safer routes, such as rectal (booty bumping) or oral (parachuting) instead of injection drug use
Prescribe PrEP if people are at risk of HIV without requiring abstinence
Test for and treat the consequences of substance use (such as HIV and Hep C) without requiring abstinence
Provide fentanyl and xylazine test strips so people know what is in the substances they are using and can adjust doses/use pattern accordingly
Recommend Never Use Alone hotlines to prevent overdose death or better yet, take turns using with a buddy
Prescribe naloxone to anyone who uses any substance- nearly all street drugs are contaminated with synthetic opioids and naloxone is an effective way to prevent deaths
People use substances for a reason, especially early in their journey- pain, coping with depression/other mental illness, ADHD, and social issues like being unhoused. Treat the problem if you can find it, and you can help people significantly decrease use or use in a more controlled way
Be aware that return to use (or return to uncontrolled use) is a thing you can plan for with the patient and manage before it even happens
Itâs hard sometimes to change the idea of addiction/substance use disorder as something that can only be treated as a reward for staying sober. But thats why so few people seek treatment for it. The evidence does not equivocate. Harm reduction WORKS.
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LAP Bands should be illegal
This post is going to deal with medical fatphobia, weight loss surgery, coercion, emetophobia, food issues, disordered eating, and just all around bad shit. But itâs important.
Shortly after I reached adulthood, I was coerced into weight loss surgery. I weighed about 250 pounds and was considered morbidly obese.
The Lap Band is a disgrace to the medical profession and is just another example of how the medical profession does not care about the lives of fat people.
To preface this: the surgery works. I lost 70 pounds and people treated me differently and I hated them all for it.
The Lap Band made my life miserable. When it was filled, I could not eat until noon without getting stuck. Even then, getting stuck was always a risk. There was a strict diet to follow and you were supposed to be safe from that if you followed it. On top of that, there were rules for how you ate. One standard I saw was not to eat in bites larger than your fingernail. Can you see yourself doing that for a week, let alone years and years?
Getting stuck is a horror you can't imagine. The food lodges in the top of your stomach, blocking off your system. You continue to produce saliva and swallow it down. Slowly, the mucous in your saliva builds up. It feels like you're drowning. Eventually, you have to essentially throw it all up. A disgusting experience (and a mortifying one if you're in public.) The saliva is thick and ropy. This experience is often called "sliming" on the forums.
I became frightened of eating in public. In a way, I became frightened of food altogether. I knew something had to give the day I reacted to someone biting a hamburger in a tv show the way a regular person would react to a killer jumping out in a horror movie. I developed the disgusting and unhealthy habit of chewing and spitting out food. I completely lost my enjoyment of many foods I had previously enjoyed because of how problematic they were (I can no longer enjoy a chicken thigh for example.) I stopped eating meals and began grazing. I developed eating habits worse than the ones that "made me fat"
After 3 years, I had the band emptied of fluid, which significantly decreased, but did not stop, these problems. I regained the weight, and found it didn't bother me. (Along the way I discovered that my discomfort with my body had never been weight related)
I had my band removed after 6.5 years earlier this year. I am in a support group on facebook for victims of this malpractice. There are 5.6 thousand members, each with their own horror stories. Some of them cannot get the band removed because insurance will not cover the procedure, though they happily covered the band's placement. Some have tried to go through with removal but have had surgeons try to coerce them into getting a different weight-loss surgery instead of just removing it. Many have long-term damage from the band eroding the walls of their stomach or esophagus, or from the band adhering to multiple organs. Many of them had the band for 12-14 years, before removal because none of our doctors told us it needs to be removed within 10.
Many practices no longer perform Lap Band surgery and now believe it is unethical. The surgeon who removed my band still performs this surgery regularly.
A study performed in 2011 with 151 lap band patients, found that 22% of patients experienced minor complications and 39% experienced major complications. The person who coerced me into surgery actually experienced major complications and needed an emergency removal.
I experienced no serious complications. Everything I described above is considered normal. And It still drastically lowered my quality of life.
I don't know why I'm sharing this or who I'm sharing it for, but here I am. If you know anyone considering the lap band surgery, don't let them go through with it without knowing the truth. And please be kinder to your body than the medical profession wants you to be.
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i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didnât believe me. sometimes it just hits me. that wasnât a normal experience for a ten year old, was it?
#chronic illness#chronically ill#chronic pain#cripple posting#cripple punk#cripplepunk#crip punk#cripple shit#queer cripple#crippunk#angry cripple#cripple life#cripple problems#functional neurological disorder#fibro problems#fibromyalgia#the chronicles of illness#stomach issues#gi disability#gi issues#medical neglect#medical trauma#physically disabled#physical disability#disabled#disability#disabilties#cripple punk community#c punk#pain posting
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Sometimes I feel like celiac disease doesn't actually count as a disability since it's so easy and stress free compared to deadly allergies, but then I remember that I have to meticulously plan every trip I go to and play 4D chess with uni campus restaurant menus and for a brief moment there was genuine consideration if I should be put on growth hormones because I was so small from not getting enough nutrients
#...but then again its so easy. its no deadly nut allergy or diabetes#but then again i cant go to some countries?????#but then again i dont even have to take like medication and im not in pain constantly#but then again i was so pale and small before they found my celiac. there was no growth in my body and i shouldve been taller#but i wont DIE if i ingest gluten#but i would have a landslide's amount of other symptoms if i did ingest gluten regularly to this day#but its really just a stomach ache its nothing#but the food is more expensive and that really adds up in the long run when theres no welfare for celiac from the government#but its so accessible nowadays its like theres no issue at all#but... i have been told people feel sorry for me#but its so easy! it doesnt really count.#not fish#complicated thoughts about a lifelong autoimmune disorder is all
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dust sans should be more unhinged i think. he is fun when heâs stoic and my favorite interpretation is where he doesnât speak a word ever but i think he should be a bit more outwardly bonkers. i think he should believe himself to be the prophecized angel of death. he should call killer a heretic out of the blue and then not elaborate. he should have more hallucinations too than just papyrus i think. of nightmare, of killer/horror/cross, of the human.
he should be irrational and have intense bouts of paranoia in which he is convinced people are out to get him and he has to strike first. that should extend to people around him. he should have a fucked up thought process and jump to conclusions a lot more. he should make assumptions of people and hate them for no reason. he should be more manic. he should have rituals he does for no reason and baseless aversions to simple things and be convinced things are connected when theyâre not
come on. pokes dust with stick. be more like i was
#sincerely someone (who is now medicated lmao) whoâs had a fair share of psychotic/paranoid episodes#he has bipolar disorder. to meâŚ.#heâs so me fr gusyâŚ..#dust sans#dusttale#utmv
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reblog if you think MUDs are epic >:3
#medically unrecognized disorder#radq safe#rq please interact#transid please interact#transid community#pro radqueer#radqueer community#rq safe#pro rq đđ#rq interact#rq community#rqcđđ#rq đđ#radq please interact#radq interact#pro radq#radqueer please interact#radqueer interact#radqueer safe#radqueer
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