#and i need to see a doctor about my chronic pain and possible (very probable) autoimmune disease

[cocklessboy]

I see a lot of people saying that gender-affirming health care like top surgery for trans people like myself should be freely available (which is correct), but one of the reasons they often give is that top surgery is very safe and has a very low rate of complications compared to other surgeries. And I often see transphobes clutching their pearls over the few people who do have complications. What about them?! What if you're one of the unlucky ones?! Should we really let those transes risk it??!!!

Setting aside the fact that no one raises such concerns over other types of surgery, I'd like to use myself as an example for anyone who needs one.

In May of 2022 I had top surgery (double mastectomy). The surgery was done by a gynecological surgeon, not a plastic surgeon, because that way my insurance would cover it.

The surgeon did his job and removed the breast tissue, but he did not make it look pretty. I have dog-ears at both ends of both scars (extra bits of skin that hang off in a very unappealing fashion), my chest still looks unnaturally flat with no muscle or fat despite a lot of working out, and one of the stitches didn't heal properly and was left as an open wound through "secondary healing" for several months before it finally healed over into a very large scab (and eventually a very large scar). My nipples are uneven and irregular and look... well, just awful, really. Due to bad genetic luck, I wound up with keloid scars which, instead of getting smaller and lighter over time, have instead expanded, becoming thicker and darker. Worst of all, I now have chronic nerve pain in my chest. My GP thinks the surgeon must have hit a nerve during the procedure, and now I have random sharp pains all over my chest even now, nearly ten months later. The pain might improve with time, or it might not.

I basically had almost every possible complication one can have from this surgery short of infection or death. Some of the aesthetics might be fixable with more surgery (though plastic surgery will be expensive). Some are probably permanent. I might never feel comfortable taking my shirt off in public again. I might have to tattoo over the scars.

And pay attention to this next bit, because it's the most important part of this whole post: I do not regret the surgery. Even with all the complications and the ugly state of my chest and the pain. If someone said they could push a button and make it so that the surgery never happened and I'd have a perfect, unmarred chest with C-cup breasts again, I would tell them to take their button and fuck right off. Because even with basically the worst of all possible outcomes, that surgery was the best thing that ever happened to me.

I don't feel good about taking my shirt off in front of people now. I do think my chest is ugly. But it's a male chest now. When I put on a t-shirt, it rests flat against my chest. No one will ever mistake me for a woman again. I'll never have to wear a bra or binder ever again.

The dysphoria I felt from having breasts was so severe that a hideously scarred chest and chronic pain are vastly preferable. The euphoria I feel when I look in the mirror with a shirt on is something I never knew I was capable of feeling.

And it's my fucking body, and it's up to me what I do with it. If I wanted to tattoo myself from head to toe, or file my teeth into fangs, or have a doctor break my legs and surgically implant extensions to make me taller, that's my right because it's my body. The fact that all those things are regarded as basically acceptable (if a little weird), but I had to have a dehumanizing interview with an old cis psychiatrist who hates trans people and wants us all sterilized just to get a piece of paper giving me permission to have my tits removed, is fucking absurd.

Top surgery (of any kind) is generally very safe, and complications are rare. But even with the worst outcome, a trans person will basically never regret it.

And frankly, if a cis woman wants her tits cut off, or a cis man wants a pair of boobs to play with on his own chest, more power to them because literally who gives a fuck what people do to their own bodies? I saw a dude on TV when I was a kid who'd tattooed his whole body to look like a cat, filed his teeth into fangs, and had loads of plastic surgery to surgically implant whiskers and make his face look more feline. It was weird! But literally no one said that should be banned because he might regret it. It's his body to do whatever weird shit he wants with.

The next time someone clutches their pearls and kicks and screams about how you can't let someone permanently alter their body in a way they might regret, feel free to point to me and my complete and utter lack of regret.

(Or have a little fun with it, go hard in the other direction, and say you absolutely agree, which is why we should ban ALL non-emergency surgeries until the patient has been FULLY evaluated by three psychiatrists - along with tattoos and piercings. Oh, and ballet lessons for anyone under the age of 25, since ballet changes the structure of a child's body FOREVER.)

#transgender #transmasc #trans man #lgbtqia+ #queer #top surgery #gender dysphoria

[transmutationisms]

I would love to hear more of your thoughts on House & its relation to the detective genre ! I think that house (completely accidentally and very badly) stumbles into a good critique of how doctors & medical structures view addicts & disabled people, with house being a horrible hegemonic mr malpractice to his patients frequently yet half is series is unironically just about all the injustice/mistreatment he faces because his doctor colleagues can’t see him as a person but only as a problem to be solved/rehabbed/therapized/institutionalized/treated like a child with stolen candy/treated like a criminal. and then it also randomly takes an incredibly pro MAID stance. which isn’t really part of this but I just remembered how batshit insane that show was. and then chase killed a dictator and I feel like the show was squarely on his side for that one. Anyway. Do you have thoughts? I really like house.

ok here's my house md take. like a lot of medical dramas, the show essentially relies for its dramatic appeal on the construal of patients as gross, weird, and stupid—rubes who are too uneducated and self-serving in their petty lies to solve their own bodies, and thus need the intervention of house to fix them. this is standard for the genre, although slightly meaner on house than on some other examples (cf. grey's or even the older and soapier generation of these shows). i don't even think house committing malpractice is all that new; it's relatively common as a plot point that positions the noble rule-breaking doctor as someone who 'does what needs to be done' and skirts the bureaucratic red tape to follow their own superior judgment. what makes house more interesting is that from the get-go, house himself is both a doctor and an unwilling patient. in itself this isn't a tension that's new to the medical soap (injuring a major character is pretty par for the course) but house's particular interactions with the ruling biomedical epistemology are, as you point out, characterised by hostility and resistance, and the show frequently either sides with house, or at least leaves it somewhat up to the viewer to decide whether house is right to resist the pathologisation that cuddy and wilson try to impose on him.

this is kind of a tricky line to walk for 7 seasons or however long the show is. my recollection is there are episodes, for example, where it's very clear that house's pain is physical, and the writers use this to morally justify his vicodin use. this is obviously not a full-throated defence of opioid users, but it is at least pointing to a position on chronic pain that allows for the possibility that for some people, long-term use of drugs with a high addiction potential and side effects is legitimately the best thing. but, this messaging is also undercut by the fact that it's primetime television, they need to make drama, and there are definitely also episodes where house is framed as potentially lying about his pain, or at least mistaking a somatic problem for a physical one, which the writers often (not always, but often) present as evidence that actually, house shouldn't be trusted to make his own decisions about drug use, and ideally should be 'de-toxed' and probably sent to cbt or whatever. of course all of these considerations are also contextualised by the fact that house is, again, not just a patient but a doctor: his right and ability to make these types of calls for himself is, it's suggested, a result of his having attained medical education and credentials. the patients who come to be treated by him are seldom, if ever, given this same level of consideration or presumed to have sufficient self-awareness to make their own medical decisions. this isn't to say they're portrayed entirely unsympathetically, but ultimately the narrative engine of the show relies on house being the smartest guy in the room (though ofc, sometimes tragically 'held back by his addiction').

so, although there are moments on the show that genuinely transgress some of the norms of the med-drama genre, i have never agreed with people who thought that the show as a whole was presenting any sustained critique of the medical system, the treatment of chronic pain/disability, or the power-imbalanced doctor-patient relationship. ultimately all authority on house md is supposed to emanate from the physician, or the physician's superiors (cuddy as a 'check' on house, though sometimes a failed one! again because of the need to generate drama for like 140 episodes), and at its most radical the show is really only capable of presenting house himself as an out-of-control aberration whose existence strains the existing system rather than being produced by it.

this is where i think the comparison to the cop show genre becomes more clarifying. house md never made a secret of being an interpolation of the detective genre, specifically sherlock holmes. however, i'm not sure i've ever really seen writing on the show that analyses what effect this actually has on house. like police, doctors are tasked with maintaining certain social norms; the dichotomy between policing and medicine isn't even a solid line, as criminality is frequently rhetorically construed as a pathology in itself and medical authorities can and do have recourse to carceral systems in order to discipline and confine recalcitrant patients, the 'criminally insane', addicts, and so forth. (policing has historically also been understood in a more expansive sense than how we use the word today; our understanding of the medical/public health system as separate from police authority is arguably more to do with university credentialling than the actual exercise of social and political power).

so, if we want to be serious about the portrayal of medicine in popular culture (i am always serious about this) then we're necessarily talking about broader systems of power, social control, and discipline, and doubly so on a show like house that is explicitly inspired by detective fiction. this is where house md is most ideologically objectionable to me: as with the trope of the cop who breaks all the rules, house is basically positioned in one of two ways throughout the show. either he's a lone genius who alone is willing to achieve noble ends (cure) through distasteful means (breaking into patients' homes, berating them, performing risky interventions on them, &c), or—and this is rarer on house but does happen—he's portrayed as genuinely crossing an ethical line, in which case he's a kind of monstrous aberration from the normal, ethical functioning of the medical system, often represented metonymously by the objections that cuddy, wilson, or house's underlings raise. in both of these cases, as with copaganda, the function is ultimately to reinforce the idea that doctors, though occasionally capable of human error, are prima facie wiser than their patients, looking out for their patients' best interests, and performing noble social roles as healers. house, ofc, is very rarely willing to admit that he has any underlying ethical motivations, though much of the show is driven by the flashes where he is revealed to 'secretly' care about another person (often wilson) and anyway, the construction of an ethical society in which all individual actors are motivated solely by selfish interests is a very established rhetorical move for those interested in defending liberal capitalist societies (cf. charles darwin, thomas malthus, adam smith, &c).

because of television's need to generate profit via audience engagement, house md always relied on a certain level of shock or at least provocation in order to sustain itself. so, there are certain aberrations from the more overtly doctor-valorising medical dramas, like the suggestion (sometimes tongue-in-cheek) that house was better at his job when he was mildly high on opioids. this was, for the reasons outlined above, never a serious entry into political critique, but it was at least refreshing in a certain way as a departure from, eg, the portrayal of addiction and drug use that we see on grey's, which is completely limited to the medicalised AA narrative of 'recovery' as a battle against the malevolent intervention of an external chemical agent. which is to say that although house md is ultimately reactionary in the way we should expect from an american tv show, it did at least dabble in a certain level of caustic iconoclasm that allowed limited departures from the genre conventions. even with what was ultimately a pretty solid vindication of the anti-opioid narrative, the show does stand out in my mind as one of the few very popular presentations of any kind of alternative stance on chronic drug use. that it's usually put in house's own mouth means it is occasionally legitimated by his epistemological authority as a physician, though ofc ultimately this authority is challenged not through a critique of the medical system, but by presenting house as individually and aberrantly licentious, undisciplined, and insane—and his chronic pain/disability are both a justification for this, and a shorthand for conveying it.

#house md

[spotty-is-slumberous]

So… this is. A bit of an emotional post for me to make, and I’ve rewritten it a few times and cried over it far more, just because I’ve been feeling very lost and hopeless recently, and I just… really want some advice. Some suggestions. … Some comfort, even.

I turn 20 in April. I spent my last “milestone” birthday, the 18th, half-convinced that I was dying because I had undiagnosed POTS, narcolepsy, and intense chronic pain that genuinely made me feel like I was on death’s door… so, uh, I didn’t really do anything special for that birthday. Or my 19th, as I was also in very poor health… though I’ve now come to the understanding, two years later, that this “poor health” is just. Not ever going to get better.

I haven’t done something “big” for a birthday since I was a lot younger. And with the way things are shaping up for me, this might be the last birthday I’m able to share with my family before I’m inevitably kicked out because I just can’t keep up with college and the deal was I either stay in school or work to stay at home, and I can’t get a physical job for reasons that’ll become clearer later on.

So… This all to say, I’d like to do something “big” for this birthday. But… I have some pretty heavy restrictions. I don’t have a wheelchair (The cheapest one I have my eye on is about $300 out of pocket, and I just. Don’t have that money. Ive been trying to save up for that, though, as it would help me get an actual job + let me get out of my house more with significantly less worry… I’ve been begging my doctors to help me get it covered by insurance, but they claim that it’ll just make me regress, which is… a whole other issue) and can only walk maybe 5-10 minutes with a cane before I need to rest. If I push myself, I’ll be bedbound with blinding pain for the next day or so, or I’ll just straight up pass out — or, usually, both. The weather is turning warmer, and I have a severe case of heat intolerance, so I can’t be outside for long.

I’m not a fan of museums or aquariums or the like… Im not smart enough for escape rooms… Bowling is out. Most arcades are out. I don’t live in a very accessible town… I don’t really want to go and see a movie; that just doesn’t feel like “enough” of a thing to go and do… So, my point here is: Does anyone have any suggestions for what I could possibly go out and do? Just random local town suggestions… I like writing and reading and art and animals haha, if that helps spark anything…

Sorry if this is just… dumb. I probably won’t get a lot of answers anyway, I’m just… I want to do something. And I’d just like some suggestions… maybe some reassurance that it’ll get better someday, and I’ll be able to have a normal birthday again… I dunno’.

Thank you for reading :) and thank you for any suggestions

#spotty speaks #actually disabled #disabled #pots #postural orthostatic tachycardia syndrome #chronically ill #advice #disability advice #young disabled #disability #disability community #I’m just… lost. I want to feel like a kid and just…. have fun. and not be a burden on anybody #I’ve been sobbing for like the past 30 minutes as I write this ugh #like I said… any advice or suggestions would be good :) #disabled community #disabled advice #advice wanted #suggestions wanted

[vro0m]

How’s your health?? Do you mind saying what’s wrong with you? If you do that’s fine I’ve just always wondered cuz you seem to be in pain a lot but regardless I’m wishing speedy recovery

Right now I'm having (probably?) unrelated stomach issues we're trying to figure out but I'm always in some level of discomfort because I have a chronic genetic condition called Ehlers-Danlos syndrome.

Full and lengthy explanation under the cut, because I really don't mind talking about it and I think people should, unlike most of my doctors 🤪, be aware it exists.

EDS is a connective tissue disorder. Connective tissue is one of 4 main types of tissues that make the human body. It's found throughout the body, around and in your muscles, blood vessels, organs, nervous system, etc. In short, it's of poor quality in EDS, too elastic and too fragile, which can cause a wide range of symptoms. There are 13 different types of EDS based on specific genetic mutations and the symptoms they cause. The severity of the illness depends on the type but can also vary from person to person.

I have the most common type of EDS, the hypermobile type. As the name suggests, the hallmark symptoms is hypermobile joints. All my tendons and ligaments, which are made of connective tissue, are too stretchy which means my range of movement is wider than it should be (aka my joints are overly flexible) and my joints are all unstable. It causes chronic pain / inflammation and injuries, and in some people frequent sub or full luxations. Other main symptoms are : a soft, thin, fragile skin described as "velvety" ; frequent bruises due to fragile blood vessels ; extreme fatigue due to poor oxygenation throughout the body ; and then sometimes specific organ-related problems depending on the person.

If you have a number of unexplained medical issues, frequent more or less unexplained joint or muscle pain, frequent injuries and/or bruises, if when you look up "beighton score" on google you see photos of your favorite party tricks to freak people out at the bar, I suggest reading up on EDS because it's incredibly poorly diagnosed and a lot of doctors don't know it's a thing.

I consider myself lucky to have been diagnosed relatively quickly and so at a relatively young age which means we caught it before I injured myself too much by not knowing what to pay attention to. But the reality of it is I saw a bunch of doctors in various specialties who all told me it was psychological until I did extensive research by myself at the ripe age of 20, was able to put together a short list of conditions that could possibly explain my symptoms, emailed EDS specialists in other countries to ask for their opinion, got told that it sounded like it and that I needed to find someone to assess me in my area, found the only EDS-knowledgeable specialist in my area, convinced my doctor to send me to this specific specialist, waited several months to get an appointment, was finally properly assessed by someone who knew what to look for, and got officially diagnosed. So really I'm not lucky, I just 1) have the socioeconomic and cultural resources to be able to read and understand medical articles 2) am very fucking persistent.

I also have a related syndrome called dysautonomia which is a dysfunction of the autonomic nervous system. The autonomic nervous system manages all the bodily functions you don't have to actively think about such as breathing, heart rate, blood pressure, thermoregulation, digestion, etc. It can present differently depending on the cause and the person but in my case it mainly causes my heart to beat too fast when stimulated and I'm generally excessively sensitive to any change having to do with my nervous system such as some medicine (can cause my heart to get too fast OR too slow, depending), exercise (at some point my heart rate would go from 70bpm to 140bpm just by standing up), or emotions (I will get a strong physiological response and then feel totally wiped out once it calms down). It also causes some mild cognitive issues due to, again, poor oxygenation of the brain, inducing even more fatigue. In my case it's nothing too massive, just some slight memory and/or attentional issues.

If you have palpitations, a fast heart rate, dizziness that doesn't go away when you're standing up, if you get an anxious feeling due to your physiological response, if your heartbeat jumps ≥30 bpm from when you're sitting to when you're standing, I suggest you look into postural orthostatic tachycardia syndrome (POTS). A lot of people have developed POTS/dysautonomia after getting covid.

Neither hEDS nor dysautonomia change my life expectancy (although some other types of EDS could). They can cause complications but by themselves they aren't fatal diseases. They are however incurable because my body is not suddenly gonna start producing good connective tissue out of nowhere, and all treatments are symptomatic aka we can do some stuff for some symptoms but can't make the underlying problem disappear.

I consider myself a rather mild case. A lot of people are very disabled by EDS. I'm mostly okay. I'm in pain but it's manageable and it responds to usual painkillers such as ibuprofen (a lot of people who have EDS don't respond to usual painkillers and local anesthetics, and a lot of them have a history of terrible wisdom teeth removal due to this, for example). I can work out which is my main pain management method (a lot of people who have hEDS have impaired mobility and/or pain levels that are too high to be able to work out). Unfortunately, I haven't been able to do it regularly since december due to covid and then my current stomach issue which is why my pain is currently flaring up. That's about it!

#vro0m's asks #off topic

[brighteyedbushybrowed]

Hi! Love your headcanons, I was wondering if you could do Copia or Terzo headcanons for a chronically ill reader (masculine or gn works) who has vasovagal syncope? I usually get small episodes of it if I stand for too long 💀

Have to get a brain MRI done soon for it and am hoping this will cheer me up before it gets done. Thank you! 💕

Hi!!! Apologies for not getting to this one sooner, I hope you see this before your MRI and if not then hopefully it will be a lovely read for afterwards <3 Part of taking so long was my own chronic illness flare up (shaking my fist at my bowels like a villain) and partly because I wanted to read up on vasovagal syncope before writing so that I could hopefully do your request justice. Hope I've done a good job!! Also I hope the MRI goes/went well for you!

𝐓𝐞𝐫𝐳𝐨

I think Terzo would probably already be aware of it before you get together

He's someone who is very open about his own health and any conditions he may have, and he wants to make sure he can support you in any way he can as well as show you that he's willing to listen if you wanna talk about your condition

When you tell him you have vasovagal syncope, he doesn't make a big deal or fuss about it

He does as much research as he can, including asking the infirmary staff about it and borrowing medical journals from the Ministry archive

He becomes very accustomed with the symptoms so that he can help you out and support you when you're about to have or are having an episode

Terzo will insist that you sit down for half an hour after you have a vasovagal episode, even if you try to tell him you're feeling better. He's not going to risk you getting up too soon afterwards and having another episode. He also makes sure your head is between your legs while you recover from an episode and will stick by your side regardless of whether you tell him to go to a meeting he's late for or not

He's very good at spotting when an episode is coming on and is well acquainted with the situations that are likely to trigger one

He'll make sure you're sitting down, will get a cool flannel to apply to your forehead when you get too hot, carries around ginger biscuits everywhere he goes with you to help combat your nausea (something that Primo suggested as he carries them around for his ghouls who get nauseous very quickly). Terzo can't always catch when you're about to have an episode, such as if you accidentally see blood or he's lost track of time and left you standing too long, but he does his best to help you through an episode whenever it happens

Attends any hospital or doctor appointments you have relating to your condition so that he can be kept up to speed and support you the best he can

𝐂𝐨𝐩𝐢𝐚

Copia does worry a little when you experience an episode in front of him for the first time

However, he has a general idea of what to do and makes sure that you don't try to get up until at least 15 minutes has passed because he wants you to be safe

Once you explain to him what vasovagal syncope is, he also does his own reading and research on the condition because he wants to know as much as possible and doesn't want to put the onus on you to educate him when he can educate himself

He carries anti-sickness tablets with him and also shows you the acupressure point to apply pressure to in order to reduce pain and nausea if he has no tablets on hand

He does his best to always make sure that you're calm and don't have to witness anything like blood or bodily harm or anything else that could trigger a vasovagal episode

Copia also carries around one of those mini battery powered hand fans with him when it's warm outside or in the abbey so that you have a way to cool off when you start getting too hot

Will sit down with you whenever you need him to and reassures you that he doesn't mine sitting down and taking as long as you need to rest. Your health and wellbeing is his top priority and he wants to be someone that you can depend upon when you need to

Rubs your back while you sit with your head between your legs and if you need a distraction he's more than happy to talk about anything and everything until you're ready to go again. Will also make sure that you have your feet elevated when you lay down if you're able to

He won't force himself into the doctors' office with you during appointments, but he promises to sit in with you if you want him to. If you don't want him in the room with you, he'll sit outside as close to the room as he can so that he can still support you

#tw: medical #terzo #papa emeritus iii #cardinal copia #papa emeritus iv #terzo x reader #papa emeritus iii x reader #cardinal copia x reader #papa emeritus iv x reader #the band ghost #headcanons #headcanon requests

[xantissa]

I was talking to some new friends recently and realized a lot of them were never taught how to manage painful/extremely painful periods.

The fact you should see a doctor if you routinely have super painful periods is a given, but in all my years of having periods so painful I would pass out multiple times a day from pain, no doctor ever told me any useful tips on how to live through them so here are the tidbits I have learned through experience and research:

1) pain management - if you know your periods are freaking painful do not wait for the pain to start. That's too late! Start the painkiller routine a day before if you can manage or at the very first sign of it. Start it and keep it! Check how long your preferred painkiller works and set a strict schedule of taking it. If you do it you will not let the pain get into the horrid stage. Basically do the same thing people with chronic pain do for pain management only your will last probably a week or so.

2) anti histamines- if you feel super bloated, sometimes to the point that it feels like your insides can't fit in your belly anymore? That's not an illusion. It's ACTUALLY what's happening. For some reason during periods our bodies start a fierce histamine reaction- histamine causes swelling of internal tissues and then yes, they kinda don't fit anymore. Act like you are having an allergic reaction and do an anti histamine routine for 2-3 days. Again, the meds have to be taken regularly to keep a proper level of meds in the system. Just taking one when you feel the worst won't really do anything.

3) electrolytes- if your periods are painful you are probably bleeding like a stuck pig. That's a hell of a lot of electrolytes just going down the drain. Literally even. Buy some of those dissolvable electrolytes and always have them at home. Drink some when bleeding, they will help with the dizziness, nausea and feeling of weakness.

Remember we drink electrolytes to avoid a risk of Heart Attack! It's not a new fanged health tip. The less electrolytes we have in the bloodstream the more risk of our heart going high wire especially when our bodies are under such tremendous stress.

4) no heat! - it may feel good for some, but heat will increase your bleeding and make the internal swelling worse. The heavier the bleed the less heat. Worst case scenarios I have known people who landed themselves in hospital by using heat packs when having a super heavy bleeding.

5) muscle relaxants - best effect for period pain are combo meds that contain muscle relaxants and painkillers. However what you might not know is that muscle relaxants lower your blood pressure, which already might be low because of the period. Try to keep an eye out on them and if it starts falling beyond your usual values beware. Look into changing your meds too, because you are probably reacting too strongly to the relaxant.

6) food - try to eat, even though you probably don't want to even think about it due to pain. Something easily digestible and caloric so that you can eat very little. You are bleeding like a victim of attempted murder. It's a huge strain on your body, give it some fuel in small dozes. Even a piece of chocolate is better than nothing.

7) rest as much as you can, don't try to force yourself to do everything as usual. There's no shame in it and your body really needs it.

I know finding a good doctor is pretty much as easy as finding a unicorn but never stop trying and by god, if it's at all possible, get the transvaginal ultrasound once a year. It may save your life.

#periods #ramblings

[agentem]

I had a pretty strong reaction to this week’s “The Last of Us.” Like I still am having trouble posting about it.

I am chronically ill with autoimmune diseases. And it made me think about how reading “The Zombie Survial Guide” in my college days was probably a waste of time.

After spending too much time thinking about it, I decided the only person who could protect me in an apocalypse scenario would be my mom. She is farsighted and doesn’t read well but she is very proud of the fact that she still has “sniper vision” for distance. She’s told me several times her doctor described it that way. She doesn’t have a “real” gun anymore (there are grandkids running around) but she does have a BB gun that she uses to “scare” squirrels in our backyard which I try to remind her is definitely against the law. But I think she’s trying to keep her sniper vision honed. She also grew up on a farm with cows and chickens, growing corn, tomatoes and pumpkins. Since she moved to get married I think her garden, which is more flowers now than on the farm, is her favorite thing in the world—possibly before me and my sisters when we are pissing her off. That’s why she needs to “scare” the squirrels. They eat her seeds and bulbs.

So Bill and Frank, aside from being an adorable queer couple they also sort of fit into “my own” apocalypse story. I wanted to know a lot more details about what Frank did. How did they find out he had Parkinson’s? I guess he must have had tremors. Did they just have Joel and Tess steal some old medicine?

What if you had a disease like mine that takes several blood tests and an MRI to diagnose? Do you take random pills for the disease you THINK you have?

I also had melanoma. And my mom had breast cancer. What do you do if that happens? Try to cut it out crudely yourself and hope it hadn’t spread? Like there are meds that you could find in any drugstore. With enough people dead, you could definitely find obscure ones easier than pain killers which people might loot. But chemo drugs? You’d have to go to a hospital or clinic and I think hospitals would be bad places to go if it’s a VIRUS or infection causing the apocalypse. Clinics might have better stuff but do they just leave chemo bags lying around? I can’t imagine they have a long shelf life.

Anyway I want a whole show about the Parkinson’s and I was kind of angry when we went back to Joel and Ellie. The end of Bill and Frank’s story is sweet the way they changed it. But only because they got to live a full life together that we only see snippets of. I don’t want disabled people to IMMMEDIATELY off themselves in an apocalypse (and I wanted something about how it had gotten worse and he couldn’t enjoy his life anymore).

I liked it. I thought both actors were very good. It just also stirred up a lot of feelings I have about people considering disabled people, like, not worthy of their own story. They are just there to set up Joel’s arc with Ellie.

#the last of us #thou #bill x frank #bill and frank #nick offerman #murray bartlett #spoilers

[barebonesblonde]

Chronic Pain Makes A Girl Insane

I seldom try to write while in the throes of a serious pain bout, but I'm going to try it today, because maybe it will help to distract me; and maybe it will reach someone out there in cyberspace who needs to read it, and that little bit of connection will help someone get through their shitty day with just a little more grace, and my small corner of the universe will be that much better for it.

Today is a bad one, my little Kumquats. Ehlers Danlos is a strange condition, where you just don't know where or how the pain is going to hit you, or how badly. Today, it's sharp, stabbing pains in my left breast, TMJ pain, which is probably going to bloom into a lovely migraine eventually (as it's been doing all week), pain in my uterus that feels like menstrual cramps but aren't, and joint/bone pain in my neck, thumbs, knees, ankles, and then finally, that all-over sort of musculoskeletal pain that feels like I've got the flu.

In other words, I feel like Microwaved Death.

Also, I'm having heart palpitations which makes me a bit nervous since I have both a mitral valve prolapse, as well as an aortal dilation (another gift from the EDS).

On top of all this, my weight is up to 119, since I've been taking medical marijuana to try and stave off the pain, which gives me an appetite, and so I've been eating a ton. Bulimia triggered, like a motherfucker, folks. Le sigh. Oh, don't worry, I'm not at the point where I'm sticking my finger down my throat, or downing laxatives, but I am at the point where I don't want to take the marijuana for my pain because getting above 115 always triggers my eating disorder, which is a whole other ugly ball of wax which we don't need to be getting into just now, now do we?

We do not.

So, I sent Max out to pick me up a bottle of kratom, since it's the only non-opiate that even comes close to touching my pain, and I'm nearly out. I'm very careful with the stuff, and made the last shipment last quite a while, but my next one won't come in for a few days, and I couldn't stand it anymore with the pain being as bad as it is, and my ED rearing its ugly head with the medical marijuana. And in any case, I LOATHE the feeling of THC, i.e., being high, so much. I can only take the teensiest amount before the paranoia and feeling of being out of control of my own mind kicks in, and I can't stand that. I have to be very careful -- as does anyone who has the Brain Cooties. I always stick to low THC strains as much as possible, but I have this goo in a syringe that was given to me so that's what I'm working with now.

Anyway, I take the teensiest amount of that once a day before bed, so I can sleep, and not actually get high. Which brings me to the next topic; I know I'm about to hit a manic phase when taking that stuff doesn't work to put me to sleep at night. And guess what, folks...

So, once again, I need to make the gazillionth call to my doctor regarding getting me a referral to a psychiatrist so I can get my risperdone prescription sorted out. If they don't get me in soon, I may have to just go to the bloody ER and get an emergency Rx for it. This is ridiculous. The mental health care in this state has plummeted wildly in the past few years; this is the first time I've had such trouble getting in to see a damn psychiatrist, and the first time my primary care doc has refused to just go ahead and prescribe the risperdone to me in the interim.

What the fuck are we supposed to do? Just...pray? To what? The Bipolar SZA Gods?

What a pathetic state of affairs this is. I feel like I am spinning my wheels, trying to do the right thing and the responsible thing for my own mental health. I KNOW I need this particular medication, but I can't get it because of the red tape and waiting lists and lack of places that take my insurance and the list goes on...

And on top of that I'm physically in so much pain I can barely think straight. I swear, it's never just one thing...it always has to be ALL THE THINGS, right?

So, if I'm not feeling better by tomorrow or Tuesday when my clinic is open again, and if they can't do an emergency prescription for me, I will just haul my carcass over to the ER and pray to the Brain Cootie gods they don't decide to inpatient me. Which I doubt, considering just a couple weeks ago, Saorsie (I've referred to her here as Kriss, I need to change that bc she prefers the other moniker) flipped out on some drug, threatened suicide, ran around the damn house naked, and the cops were called after she was getting violent and she was home that same damn day.

...can you even?

As I said, mental health care in this state...Hell, in this country...has gone to absolute shit.

If you know me at all, you know I'm the biggest proponent of TAKING YOUR MEDS, and now I'm having a Hell of a time getting the one I really need in order to get my mind right.

Let's see, what else can I possibly complain about today?

My brain hurts, my body hurts even more...well, at least my heart doesn't hurt! I suppose one must count one's blessings. In fact, on that note, I have wonderful friends, indeed. Which, it may be argued, is far more important than lovers. At least, to my mind it is. Romance comes and goes. Friends are for life -- or, at least, they ought to be.

This is what keeps me sane, you see, when I'm in this much physical and mental pain -- reminding myself what's good and pure and solid in my life. What I have that I can count on. I have Joe and Max, both of whom go out of their way to make my life easier however they can, and are kind to me (and my cats), and make living with Saorsie and her addictions (and untreated mental illness and entitled bullshit) less horrific. I have my friends, who are here for me when I'm feeling hopeless and miserable, and remind me I'm not alone, and hopeless, and helpless, wandering alone in the dark.

It's easy to get caught in this downward spiral when I'm in this much pain, and my brain cooties are chittering away up there, and I start thinking about my future, and all the things I wrote about in the last two posts...and this is why I write. I write to remind myself of what's real, and what's good. I write to navigate the darkness. Sometimes, to explore it, to make myself at home in it...

...but mostly, to navigate my way back out of it.

#brain cooties #mental illness #take your meds #schizoaffective #mental health recovery #ehlers danlos syndrome #eds zebra #chronic pain #bulimia #eating disorder #eating disoder recovery

[jeneelestrange]

I see a lot of chronic illness people going to like, the scariest possible disgnoses without ruling shit out, which I GET BELIEVE ME because your body is screaming that it’s on fire and like two hundred years ago any of these things might have killed us but like……I’m more and more convinced a surprising amount of the time the answer boils down to a crack in the system from the fact that doctors have the least amount of training in nutrition and sussing out malabsorption/food allergies/intolerances, and even then, doing it is a BITCH and can’t be done in five minutes by throwing a pill at it, which insurance companies hate. Like, these have to be things we’re not testing or really looking into often or aren’t easy to look into.

Your heart’s fucking up? Ok, every doctor’s got a minimum of 100 hours on that. Nutrition issue? 25 hours. A lot of schools don’t even meet that and are suss on how they even count that. And don’t even get me started on nutrition RESEARCH which is the red headed stepchild and long story short there’s a long-winded reason why it feels like one year you’ll hear something like “Blueberries cause cancer!!!!” and “Blueberries cure cancer!!!!” the next and even a lot of the basics are built on pretty hnghhhhh suss shit but ANYWAY.

Think about it—if you are not absorbing a nutrient, you’re going to have symptoms that affect YOUR ENTIRE BODY. BELIEVE ME, I have confirmed four of them, and incredibly likely a fifth. Many of them cause anxiety, depression, fatigue, and believe me, it’s DEBILITATING(fyi if you look it up and have a LOT of anemia symptoms but your CBC is always normal, you may have too much folic acid for reasons I won’t get into for brevity and that hides it on the CBC—insist on a homocysteine blood test, if you have high cholesterol like just about every adult ever the doctor can use the ICD-10 code 78.00–certain countries like America also just have much lower standards for B12 for like, I don’t even know what reason even though the WHO has recommended the international standard be set to that of where Europe and Japan is at—ask me how I know all this hahaha 🙃). And if your doctor is shitty—depression, anxiety, and fatigue no matter how outrageous just gets you an SSRI consistently only.

And if you’re a fat woman and the deficiencies make you anxious and depressed? God help you. God. Help. You. They are looking for weight loss and even if they know micronutrients exist and would NOT cause that hmmmm or you could just have IBS and have depression and need to calm down, right? I could tell my GI doctor had only read the top sheet of my progress notes with the GI symptoms only and was probably like “abdominal pain lol” because unfortunately people in this office had a tendency to do that and then immediately stick their foot in their mouth. I told him I was concerned about malabsorption issues and he said, “But why? People with that are usually skin and bones.” I just paused aghast for a moment and said, “I have four vitamin deficiencies????? Three of them are different forms of anemia????? Might even have a fifth one but I’m not that interested in getting off magnesium for a month and getting full body cramps, migraines, and muscle twitches again for a blood test that isn’t very accurate.” I have never seen someone so quickly read a chart and say, “Well you’ve convinced me!!! Let’s schedule a colonoscopy!!!” and try to get out of the room.

You have to check off all the little weird shit your body is doing for the record so they can’t say they didn’t know, yes, the weird bruises that you don’t know where they come from, yes, the nosebleeds, everything. I used to be really butthurt about the diagnosis of fibromyalgia until I realized there’s very few ICD-10 codes that can be used to test for vitamin-D deficiency, so unfortunately some things are about getting us the best care in a broken system.

#chronic illness #chronic fatigue syndrome #chronic disability

[hypnotixstorm]

It’s been awhile...

This will be quite the read, so I’ll keep it all under the cut, with a slight trigger warning. I am talking about my personal life and what I’ve been dealing with. Thank you for being understanding and taking the time to read this post. I love you all. ♡

✧･ﾟ: *✧･ﾟ:*  *･ﾟ✧*:･ﾟ✧ 

I know none of you were probably expecting this. I mean, to be completely honest, I wasn’t expecting this either. However, after still getting many messages in my inbox and love on the content I’ve posted, even though I haven’t been around in... roughly two plus years, I wanted to make a post/announcement for everyone. This is to kind of explain what’s been going on in my life and what my plans are for this blog. Thank you all so much for the continued love and support during my absence. 

So, to start off. Why have I been gone so long? Well, that’s a very, very long story that involves a lot of trauma and my personal life, so I’ll keep it as brief as possible. I dealt with a string of abusive relationships, many different jobs, moving several times (and by “several times”, I mean that I moved about 7 or 8 times within a year, including between different states), losing friends, trying to better my health, re-discover who I am, and so much more...

I’m not going to get into the details of my relationships or anything like that, but I would like to briefly talk about my health. I’ve finally gotten the chance to see doctors to get confirmed diagnoses, rather than simply wonder if I have something or not. As of right now, besides the mental illnesses I was already well aware of, I had a diagnosis that confirmed I have rheumatoid arthritis, or RA for short. For those of you that don’t know, it’s an autoimmune disease. I’ll post a link that will give you guys basic info about it so I don’t make this post even longer than it needs to be. To put it into simple terms, however, it’s a chronic autoimmune disease that mostly affects joints. RA occurs when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues. The disease causes pain, swelling, stiffness, and loss of function in joints. Having a diagnosis is relieving but it’s also added a lot of stress to my life. I also have had 2 cancer scares now. The first scare (my lungs), which I got testing for, was clear. But now, on my second one (my thyroid), not so much. I have to wait a year to get retested to make sure nothing has gotten worse. It’s a lot, I know, but something I wanted to open up to you guys about.

Link: https://www.niams.nih.gov/health-topics/rheumatoid-arthritis#:~:text=Rheumatoid%20arthritis%20(RA)%20is%20a,loss%20of%20function%20in%20joints.

I also wanted to take the chance to reintroduce myself. I was still me before, but a lot of things about me were the choices of controlling ex’s, and not my own. So, hey there. My name is Stormi. I’m a 24 year old who is non-binary, born female, with no preference to pronouns. You can refer to me however you’d like, and I’ll be happy regardless. I enjoy listening to music, drawing, reading, writing, making crafts, playing video games, watching videos on YouTube, playing Dungeons & Dragons and so much more. It’s hard to encapsulate the person that I truly am over a post, but I still want to give you guys a little bit of an insight into who I truly am. 

As for my plans on this blog... I’m not quite sure. I want to start writing and posting again, I do. But my health complicates that a bit. I think I will, but I won’t take it quite as seriously. What I mean by that is not that I won’t care, but I won’t be stressing myself out with it as much as I used to. I think I’m going to delete every single ask that I have in my inbox, re-work my character masterlist and a few other things and let you guys know when requests are open. When that happens, please feel free to request! Just be patient and give me some time to get to them. Also, in regards to NSFW content, I think the only thing I’m going to be accepting is probably headcanons. Don’t get me wrong, I like my smut just as much as the next person, but it’s really difficult for me to write it at times. I also worry that everything will end up being too similar.

Anyways, if you made it through this entire post, then thank you so much. It really means a lot to me. You all have been wonderful to me over the years, and I hope you all are excited about my gentle return to the world of tumblr. Even if you guys don’t have any requests, feel free to get into my inbox just to talk. As I’ve said before, my blog is a safe space for everyone. Thank you, I love you all :)  ♡

#stormi speaks #im back #kind of anyways #ive missed you guys

[tortiefrancis]

hey sam!!! praying for you 💖

I've struggled with some similar issues with chronic pain. As a kid the doctors told me it was somatic, and my family just went along with it. But the older I get and the more I read new research online I've found that that untreated/undiagnosed fibromyalgia and other chronic pain seems to be a common problem among a lot of neurodivergent people. It's possible that you are having unexplained pain because your nervous system is overwhelmed, and/or because you are more prone to inflammation, and/or because you have naturally loose or tight joints (Hypermobility). These are all things common among neurodivergent people for some reason.

In my opinion, one of the best things you can is to manage stress / take care of your body as well as you can, involving stretch/mobility exercises like Yoga or Pilates. Yoga is amazing and is the best thing that's ever helped my pain, I've never tried Pilates but I'm sure it's great and I'm so glad you are already doing that!

Of course I am not a doctor, and if you can it may be good to get stuff checked out again just in case they missed something. If you can, maybe try to research doctors you can go to who specialize in functional medicine or something more holistic who are more willing to look for the root causes of your pain/issues. You have to be careful though since some doctors in functional medicine or doctors of osteopathy (D.O.) might be into weird stuff that isn't actually proven by science and are just trying to sell you stuff. But if there is anyone at a local hospital system with a good reputation who specializes in something more along those lines they might be good to look into.

I know for me I probably would have a lot more pain if not for a couple doctors finally realizing I had some hormonal issues that needed to be treated before I could begin to address other pain. Endocrinologists would be the ones to talk to if you think there might be an issue with hormones. There could be other genetic factors at play as well, which is why it's probably good to get a second opinion.

Hi, thank you so much for your response, this means a lot.

First I'd like to say I've started doing pilates for about 2 years now I think for that exact reason. It's actually helped alleviate some extra pain immensely because, due to the chronic pain, I couldn't exercise, and so my muscles were weak and aching a lot. It's improved my life a lot and is also what's been making me want to seek a doctor for the second time

Secondly, I sadly don't have much of a choice on the doctor for now, but she's a rheumatologist that my mom knows well and seems very serious and well researched, so we'll see. Maybe if this goes well I can go to another one to see a different approach to my issues

Also, I'm not scratching out the idea of it being somatic, but I think it's weird that ive been feeling this way for over 3 years now and also I have pain even when I'm happy or overall good. I don't think I'd be having it if it was caused by my anxiety or whatever. But we'll see

Also, I have hormonal issues, mainly endometriosis and maybe some funky stuff with testosterone or whatever, but nothing too conclusive on test results that could explain this.

Thanks again! This was genuinely a great ask and I'm so grateful

#sam.asks #long post tw #long post

[disabled-dragoon]

Any recommendations of what mobility aid to use for chronic hip pain? I’ve been looking into getting a mobility aid to help me but i can’t figure out which one would work the best?

Well, my first bit of advice would be to discuss this with a trusted doctor and/or physiotherapist when/if you are able as they should go through your options more thoroughly, and potentially find a mobility aid that suits your needs exactly.

That being said, here are a few options to consider. I don't really want to recommend anything outright because I don't know things like the extent of your pain and I don't want you to feel misled, but I figure maybe hearing some options from another disabled person with experience using them might help you make your decision:

I also answered something similar a while back which you can find here, which might be of some assistance.

Canes: Personally, I mainly use a cane to help with my stability and balance, but it does help to ease my hip pain. There's a very clear pain difference when not using my cane in comparison to using it, and I personally would recommend this option. Single point canes are great if you're just looking for a bit of support and pain relief in your bad leg/hip, however they're not a great option if you ever have to completely remove the weight from whatever side it's supporting. Three-point and quad canes offer a bit more stability and support, and they can stand by themselves- unlike single point canes. Again, I wouldn't recommend this option if you find you have to take all your weight off your hip, but for pain relief and balance support, they're great! You can also get seat canes (literally just canes that double as a portable stool) for when out and about, if you need to sit down due to pain. I've found this to be the easiest option to use when inside, being quite small and thin, and you can get foldable ones that you just carry around in a bag or something and whip out if your pain flares up, which is quite handy if you don't want to rely on it all of the time. If you're considering a cane please make sure you get it adjusted to the right height and learn how to use them correctly, otherwise you can cause yourself more pain.

Crutches: I haven't used crutches in a while but they're not bad. They work in a fairly similar manner to canes, except they can be more weight bearing. Plus, with forearm crutches you can strap them to your arm so there's less chance they'll fall when you're standing up. There is a chance if you fall while using a forearm crutch you can really hurt your arms, and cutches in general can require the use of a bit more upper body strength than a cane, but for the most part they're alright. You should also see that these are properly fitted to your height and weight requirements as well to ensure you get the best support possible. They do require a bit more practice than a cane to get used to, but you can use crutches as a pair or as a singlular device, and you can get different types depending on your needs.

Auxillary/Underarm crutches are probably the most common one people think of. Personally I don't like these ones; I think they're incredibly uncomfortable and painful sometimes, and they have been known to cause wrist pain and issues after extended use, or incorrect use. But they can be less cumbersome than forearm crutches which is a bonus, and they can be more weight bearing and supportive than a cane if you know how to use them correctly.

Forearm/elbow crutches are basically the same, but I find these to be more comfortable than auxillary crutches. They can be attached to your arm for a bit more support and personally I think they're somewhat easier to use than underarm crutches. I started using one when my hip pain was getting to be more of a problem and they're not bad- it was during a time when I had to walk around quite a bit and so would constantly agitate my hips, but the crutches made it easier to handle. It was a little awkward trying to move around indoors with them but they were still good.

Gutter crutches. I've never used these to be honest, but I've seen them and they look quite comfortable. They just look like forearm crutches with extra padding so I assume they work in a relatively similar manner but I could be wrong.

Walkers: I've only used a rollator (a walker with wheels) a few times and I can see the appeal but I can also see the disadvantages. If you're looking for pain relief that also offers a lot of balance support, this is probably your best option. If you're just looking for simple pain relief and support isn't too much of a concern, I don't think this is the option for you. Regardless, they're not bad. They can take a while to get used to and they're not as mobile as things like canes and crutches, but you can get ones with wheels and seats that make them easier to move so if that's something that appeals to you then maybe check them out.

---

I'm quite biased towards the cane to be perfectly honest, but mobility aids are always a matter of personal preference and need and so it really is just a matter of trial and error until you find the one for you.

Again, I would always recommend talking through your options with a trusted doctor or medical professional if you are able, and it might help to make a list of what you're looking for in a mobility aid to help narrow down your options as well.

Some questions to consider:

What do you want out of mobility aid? Is it just pain relief or is it something else as well like balance support?

What's your budget like? You can find decent mobility aids with a bit of shopping around but it's always best to have your budget in mind when doing so so you know what you're working with.

Will you be using it all of the time or just sometimes?

Do you want something portable for use as and when you need it or would be comfortable with something you'd have to carry around all of the time?

--

I hope this has been of some help to you in your search, and I hope you'll find the mobility aid for you. Like I said, it's all a matter of trial and error so please don't fret if you settle on one and realise later that maybe it wasn't the right option. That's just this works sometimes.

Good luck in your search!

#ask me anything #ask box #disability #disabled #actually disabled #chronic pain #disabilities #pain #mobility aid #mobility aid user #mobility aids

[intersex-support]

Would you be able to look at my symptoms and point me in a direction? Im afab with non-ambiguous genitalia, but I've thought something could be off. My Dr says that we can't test for hormone problems because I need to perpetually be on birth control now, but I don't really know what to make of my reproductive health.

I didn't have a period until I was 18 yrs old. I never developed breast tissue until my highest dose of estrogen in my 20s and even then I have a small chest. When I started my period, it just never ended. Like I only stopped bleeding now, when I'm 27 and have had an IUD for a while. At first it was very heavy, but with sequentially higher bc doses it got lighter and is finally gone. After the first 2 years I had to get a blood transfusion because I lost too much blood lol and was fainting constantly. Even then it was a while until I recovered. I know I don't have haemophilia or a significant blood clotting problem (I have a minor one due to ehlers danlos). I know I don't have uterine cancer. They think I do have some endometriosis, but have told me the period is likely a hormonal thing. I don't have cysts on my ovaries as far as drs can see after multiple tests, and my current gyno (who seems the most truthful and good tbh) says that I probably just never ovulated really which is why it was perpetual. My first Dr to do an ultrasound came back and said "so you do have ovaries" which I've always thought was suspicious because it did not sound like a joke.

I had to be taken off estrogen because I have migraine with aura, and since I've got my mustache back.

I do have facial hair and more than average body hair, but nothing too drastic. I still have hormonal acne which I hate. I ask because I havent been able to find much about "late bloomers" and never ending periods without haemophilia. My Dr admits she doesn't know if it's PCOS, but said it's probably not worth testing because I don't want kids. Does this sound familiar to you? Would you know what tests to ask for?

I have a lot of health problems outside of this too, but it seems like this is separate. It may not be anything intersex related, but I don't know what it could be and it has been a source of some pain in my life because it did almost literally kill me without having any idea why this is happening lol.

Hi anon,

It sounds like you've been going through a lot in terms of health problems, and I really hope that you're able to find some answers. I'm not a medical expert so I can't really speak on what all the possibilities are, but I can speak about some things in the intersex direction.

It sounds like you've ruled out blood disorders, or at least blood disorders beyond your blood clotting problem with EDS. You've ruled out uterine cancer and I'm guessing you've also ruled out cervical cancer. Have you ruled out thyroid problems? That can be another possible cause or contributing factor. It does sound like your doctors have been evaluating whether or not you have an intersex variation, and I honestly think that it might be really likely. The fact that you have to be on consistent hormones to manage your period is really significant to me and I think that there's a lot of things that you've described that make intersex variations worth looking into.

Since you know that you have ovaries and you do experience a period, we can rule out a lot of intersex variations. What I really think you might want to look into is (N)CAH. I have NCAH, and I had a constant period. Literally would bleed for months, constantly, got severely anemic, and the only thing that stopped it was getting a progesterone IUD. I got my period when I was 11, had other clearer signs of hyperandrogenism, and went through puberty, so not quite the same as you, though. I also have some weird comorbid chronic illness things that might have contributed, but my constant period was the thing that basically got me diagnosed with NCAH. The fact that you have other symptoms like more body hair and hormonal acne is also a clue. It might even be possible that you have CAH (that's not salt wasting) that is one of the rarer types.

I'm not an endocrinologist and I don't know the specifics about what hormonal birth control makes what tests impossible, but I'm pretty sure there are some tests that should still be able to be done, especially if you are not on estrogen and are only on progesterone. The tests for (N)CAH are to get your testosterone levels checked, to get an ACTH stimulation test, and an 17 ohp level test. I think that you should still be able to get these done with a progesterone IUD, although I know estrogen can affect the ACTH stimulation test results. I'm not as familiar with how the other subtypes of CAH are diagnosed, but I know it involves testing responses to cortisol and also might require genome sequencing. PCOS is also basically diagnosed the same way as NCAH (some doctors are starting to see NCAH and PCOS as way more related than previously thought.) PCOS is diagnosed when everything else is ruled out and when two of these three things are present: hyperandrogenism, ovarian cysts, and oligo anovulation, which is basically irregular periods and difficulties with ovulation.

Honestly, if you hadn't said that you got an ultrasound done and that you had normal ovaries, I would have pointed you towards Turner's syndrome and mixed gonadal dysgenesis, because from your ask it sounds like you didn't start to go through puberty until you went on estrogen, and that really jumps out at me as something that Turner's syndrome could cause. Again, not as familiar with whether ultrasounds can malfunction, but I did just read this study that says that some people with Turner's syndrome had ovaries that appeared totally typical on an ultrasound. I really think you might want to look into getting an ultrasound again, or get a gonadal biopsy to see if you have ovotestes. This is a list of symptoms of Turner's Syndrome. To get diagnosed with Turner's syndrome, you would need to get a genetic karotype. If you have any hearing loss or heart problems, those can also be signs of Turner's Syndrome. Mixed gonadal dysgenesis can also cause some similar symptoms, and would be diagnosed through a genetic karyotype.

I also think something you might want to look into is another intersex variation called Follicle-stimulating hormone (FSH) insensitivity. This is rarer, and I know less about it, but basically, it causes ovaries to not work right, creating a lack of estrogen, can even cause ovarian failure. People with FSH insensitivity usually don't have puberty without hormones, like you described. I'm not familiar with what periods typically look like when people with FSH insensivity go on estrogen, so someone correct me if I'm totally wrong. But a lot of things you've described really line up, and it might be worth it to get your FSH levels tested. I think you might also need to get gonadal and gonadotropin levels measured to diagnose FSH insensitivity.

I will admit that some of what you're describing is more severe than what is the typical presentation of these intersex variations, but I don't think that necessarily means that it isn't possible. I could also totally see it being the case that some of your other health issues like EDS could interact with a possible intersex variation to worsen the symptoms. I can't say for certain whether or not you have an intersex variation, but I will say that this ask had a lot of things that made me really, really think that it might be a possibility. Like. even more things than the typical asks I answer on here.

Honestly, if it's possible, I would look into getting a referral to an endocrinologist who specializes in intersex care (probably the language they will use is disorders of sexual development). It can be harder to find doctors as an adult, so it might even be worth reaching out to an intersex team at a pediatric hospital to ask them for referrals, because I think that what you're describing is going to take a specialist to diagnose. Your symptoms in many ways seem very clearly intersex, but they differ from the typical presentations in a few ways that might challenge doctors. If you want to send in another anon ask with more specific information about your location, I'm happy to do research for you to try to find a doctor who might be an expert.

Seriously wishing the best for you, anon, and please feel free to reach out with any other questions. You really deserve answers and support in this journey, and you are welcome to vent, ask questions, anything you want in the inbox. Love and solidarity from the mods here!

-Mod E

#asks #actuallyintersex #intersex #btw if you want to join the intersex discord as well. send an ask off anon #also anon this ask literally reminded me of so many things that have happened in my health journey #like. so so many #so like I really feel for you and literally. anything u need from us feel free to ask #I know how frustrating this is!!

[bea-l-zebul]

I’m bearing my soul for a second here.

Body Positivity is a good thing, you’ve got one body so you should do what you can with it, you should appreciate it no matter where you are right now, i get that

But as someone with multiple physical disabilities, that cause chronic pain, fatigue, and a plethora of other problems, its sometimes so hard to actually appreciate anything about yourself, because you inherently feel like you can’t do anything

It’s even worse when your already big, i had lost some weight and was getting a lot of praise from my doctors, and then i had my first (potential) MS/ autoimmune flare and gained 17 pounds back, and suddenly that praise stopped and it turned into ‘you need to loose weight’ lectures all over again, as if i wasn’t aware.

Ignoring the fact that I don’t need more stress right now, nor can i really move, I’m in pain constantly so movement is anything but “joyful” for me, and on top of that i have ocular nerve damage from the flare, and during the flare i was extremely dizzy and motion sick and fatigued from the acute onset of nystagmus.

Im on medications which can cause weight gain, I have PCOS, my DMM for whatever autoimmune condition i have (they haven’t figured it out yet, but they are working on it) will also probably cause weight gain since it is steroid based.

And the doctors who tell me this just, don’t take that into consideration, like at all. Im not going off a med that works because it caused me to gain weight, that’s ridiculous (But its the suggestion that every foundation for MS or my other conditions suggests you do, its not like treatment is a strategic thing or anything/s)

And then the messaging you get from other people “submitting to ‘fat logic’ is bad and means you gave up on yourself”. Really? Well what do you suggest i do? My doctors just tell me to “loose the weight” and then are baffled when my weight fluctuates because of medical issues and treatments? This is a loose loose situation, either i keep on attempting to loose weight just to loose weight, or i try to focus on other things for my health and get called a looser and a waste of space because of my weight by society, and get told I’m using my very real medical conditions “as an excuse to not eat less and move more”

Im not even that fat according to their flawed BMI shit, according to them i just fall into the “obese” category.

It’s hard to value yourself or what you can do when society tells you thats off limits both because of your weight, and because of your disabilities.

Anyway, im hoping to learn a little more over time, and maybe see a HAES nutritionist (my new insurance possibly will cover it 100% so, yay for that) because i need help navigating this with as little stress as possible.

#haes #body posititivity #body positvity #just learning #tw ableism #tw fatphobia #tw fatphobia mention #MS #multiple sclerosis #heds #chronic panic #chronic pain #off my chest #kinda rant

[thedisablednaturalist]

as a young person with chronic pain that may be fibro or cfs, you make me feel better about possibly needing more than just a cane. I have no mobility aids right now (my mom has told me that if I need to borrow my dad’s old cane - which he doesn’t use anymore - in order to walk, then I just shouldn’t go out), and what I really want is a rollator, but I feel like I need to compromise with my ableist parents by just asking for a cane. anyway, my point is, thank you for showing me that it’s ok for people with chronic pain to need more extensive mobility aids

That sucks anon. Please don't feel pressured to choose between staying home and forgoing using mobility aids. My parents were very unsupportive until I basically had to break down crying infront of them. My mom is still unsupportive but my dad just wants me to not be in pain. He paid for my wheelchair and supports me in my medical decisions. It might help to find a doctor who can help explain to your parents why you need a rollator and how it can help you (this will probably be difficult as most doctors I've talked to are very against young people using mobility devices unfortunately) but all you need is one doctor that's on your side. My first rheumatoid arthritis doctor laughed at me when I brought up the possibility of using a walker. My current doctor helped me get a handicapped permit. Honestly, just start using it and if your parents give you shit that's their issue. Idk how young you are so maybe be careful if you're still a minor. Either way, see if you can get a rollator from goodwill or craigslist. I got a pretty decent rollator for $40 from goodwill and I got my wheelchair for $80 from Craigslist. I had to buy parts for it but it still came out to under $200. If you don't see one right away keep an eye out cause there's new listings everyday. Some rollators fold up so you can keep it out of sight until you need it. Or be like me and just start using it and ignore your parents ableist complaining lmao

Never feel bad for doing anything that reduces your pain. It's not selfish and it's not lazy. Abled people can't imagine the shit we go through just to get through the day. I hope you're able to get a rollator!

#chronic disability #chronic pain #mobility device user #spoonie #rollator #this is why i run this blog #to share what ive had to learn and give back positivity and strength to the disabled community that helped me #i hope your parents can get past their bigotry and help you #i dont get why parents would rather their kid be in pain than use a mobility devide #they probably just dont want to be known as the parents of the crippled kid

[my-memory-blogs]

Living without motivation is pretty miserable. Each day I wake up feeling tired, even if I’ve slept the night before. I get maybe 2-4 hours of having enough energy to function during the day, the rest of the time I’m just drifting through, putting off anything that takes effort. Every day is the same. Nothing ever gets better, it only slowly gets worse. I have very little internal drive or pressure to get things done. I am literally depressed. There’s not enough inside my mind to force myself to function.

There’s so much that I need to do. I need to clean my place so it’s less of a tip when my girlfriend comes round. I need to find new sources of work before I lose my mind with my current employer, and before my electric bill doubles. I need to see my doctor to have my chronic arthritis checked. I need to start exercising again. There is no lack of external pressure or reasons to get my shit together. If I don’t sort my shit out, I will end up homeless, or moving back in with my mom, neither of which seem acceptable. It’s not quite life or death, but there’s plenty of pressure there.

But I still put off everything for as long as I can. My life is incredibly messy and disorganized. I have no self-discipline. I do have the urgent voices in my mind constantly telling me “you need to do this!” But a large part of me just doesn’t care. Rationally, I know that it can get so much worse than it is right now. But emotionally, I just don’t care. Part of me wants it to be over. For it to get so bad that I have no choice but to end it. Because this isn’t a life worth living.

It’s not that there’s nothing that I want from life. It’s that it all feels incredibly unrealistic, and even if I did somehow get it, I don’t believe I would be able to really enjoy it. I don’t believe in a future for myself anymore. I don’t have hope. So I’m just drifting through life. There is no goal. Even trying to make things less painful seems pretty pointless, since my mind inevitably fixates on all the negatives. I would probably be miserable even if my circumstances didn’t suck.

So I have my endless list of things I should be doing, and pressing reasons to do them as soon as possible. But my heart just isn’t in it. In living. It’s not for anything. I don’t care enough, about anything, to force myself to really function day to day. I can force myself to meet a work deadline, because then it’s clearer to me that if I don’t, I lose my income. But anything more pre-emptive that might actually improve my circumstances long term just feels empty. Why exercise, or eat better, or take care of my body, or look for new work? Because it might mean less pain down the road? Fuck that shit. If the only future I can imagine is one more or less miserable, I want no part of it. I’d rather check out, and numb myself in the here and now.

Which is completely irrational and counter-productive. And I know that in a few weeks, or months, or years, I will once again be cursing my past laziness. But I just can’t bring myself to care. I can’t push myself to fight for a life that would be marginally less miserable. I can’t bear to face that reality 24/7. I would rather retreat into fantasy, addiction, and delusion.