#They DO now want me to see a specialist for my IBS now and I just got done having unnecessary blood taken.

[iero]

I now understand why some younger generation people don’t even have a primary care doctor. This shit is frustrating and/or useless sometimes.

[thelonelyempath]

hey there! could ya do a few emeto/stomachache comfort prompts please?

Bruh you read my mind 💀

I was thinking about doing one of these because I have been having terrible stomach pain for the last week or so. I went to the doctor and they told me to go to the ER because they thought it was appendicitis. Thankfully, it was not appendicitis. The doctor at the ER said my symptoms were presenting as either IBS or Crohn's, so now I'm trying to get in to see a specialist and get a for sure diagnosis. But enough about my health problems. Let's get into the prompts.

Stomachache Prompts

"I told you. Dairy is bad stuff, dude."

2. "Where does it hurt?"

3. "I'm sure it's nothing a cuddle and some tummy rubs can't fix."

4. "Does it hurt like...it's your time of the month?"

5. "If you want me to rub your tummy, you need to uncurl yourself."

6. "Your stomach needs to chill. I heard it all the way over here."

7. "How bad is it right now?"

8. "I'm guessing it's either a 10 or very close to a 10 from the way you're doubled over clutching your stomach."

9. "I'm sure you probably just ate something that's making your stomach feel all weird."

10. "Just let me know if you need me to hold your hair so you can throw up."

11. "Drink this. My mom used to make it for me whenever I got a stomachache."

12. "Oh wow, you weren't kidding when you said you were bloated."

13. "That's it. I'm taking you to the hospital."

14. "Why didn't you tell me it was this bad?"

[lifblogs]

🖤🎂🎧📝🫐🪻 <3

Omg, thanks for sending this ask!

🖤 Favorite hobbies outside of your blog?

I’m a housebound nerd. It’s reading and watching TV for me! I’ve also gotten back into listening to music, which doesn’t always work out because of my TBI (sometimes makes me sick, and causes pain). Does being a cat mom count? Sometimes I’ll be on mommy duty for a couple hours a day, and I love it.

🎂 When is your birthday?

April 3rd!

🎧 Last song you listened to?

“Ahsoka - End Credits” composed by Kevin Kiner for Ahsoka.

📝 Last thing you wrote?

This. Ironically, I wrote it the night before I hit my head. :( *sigh* At least this idea is finally started, at least.)

🫐 Some place you’d love to visit?

New Zealand! Someone take me to the Shire. Also Alaska; Lyons, France (actually lots of places in France); Iceland, England, China (probably somewhere rural, like any of the mountains, or maybe Henan Province); and the Great Lakes.

🪻 What is the toughest thing you had to go through, but can you’ve successfully overcome?

‼️WARNING FOR SEVERE ANIMAL ILLNESS.‼️

Maybe some people won’t like this answer, but I’m not sure humans actually overcome hardship. What we do do is change. We adapt. It’s what we’re good at even while we hate it. So with that said, I… actually have a hard time choosing because my life has been filled with tough moments that I’ve had to work through in order to keep living. So many, to the point of even surprising a few mental health specialists. I’m sure my answer for this will be different every day, but right now I want to say seeing Loki have his first seizure and having to take him to the hospital while I unknowingly had a broken leg. I had a panic attack when I saw his seizure and how distressed he was, I saw my life literally crumbling around me. Finding out this will eventually kill him was one of the hardest things I’ve ever had to acknowledge. And hearing that his bloodwork showed he was in pain from the seizure— That was one of the worst nights of my life. I didn’t sleep at all, and I was sick from my IBS and migraines and fibro because of it, and I just cried and cried. And then I went to physical therapy while he was still at the hospital, like my life was normal. We took him home that day and already his life was different, mine was different. Yet I swear I love him more every single day. I’m scarred, and I’m absolutely terrified about his future, and I’ve had to watch him have almost a hundred seizures since then. Yet I make myself as excited as possible every time I see him. I play with him as much as I can, I shower him in kisses, and cuddles, and love. I keep living with him as my baby. I cry sometimes when he’s sick, but I pull myself together for his sake. And I’ll be honest, I have no idea how I’m still here, but I am, and I think it’s for him despite the pain. So I never really overcame anything. I adapted. Loki adapted. He’s my baby, no matter what comes his way.

[oneshortdamnfuse]

I still want to rule out MS b/c I have chronic paresthesia and muscle spasms, and my primary has suggested seeing a neurologist if my vitamins aren't improving anything.

I'm currently taking b12 and vitamin d.

However, I keep getting recommended HEDS content because of my GI issues, joint issues, tachycardia, heat sensitivity, and frequent sprains and strains, etc.

More Under Here - if anyone has these conditions: HEDS, POTS, MCAS, feel free to interact.

I was tested for POTS via a heart monitor and a tilt table test, and I didn't meet the criteria. My heart doctor said my tachycardia was normal and I just needed to drink more water / electrolytes.

I did the tilt table test after about two months of drinking a lot more water and electrolytes, so that was probably a bad idea if I'm supposed to do the test at my "sickest."

About half an hour after the test, I had severe paresthesia in my legs and I had abdominal pain and cramps. I couldn't eat without rushing to the bathroom.

But. My heart rate didn't go above the 30 bpm they were expecting from resting to rising so. No POTS.

I still have random heart palpitations.. especially when I lay on my left side. I still can't climb stairs without getting winded, and I can't do much physical activity without exhaustion.

The thing is... I don't think I fit the criteria based on the Beighton scale?

The stretch of my skin is very mild, and only significant around my hands and feet. I can stretch both pinky fingers beyond 90 degrees, but I can't touch my thumb to my wrist.

I don't have bendy elbows, but I can touch my palms behind my back. I do have "coat hanger pain." I have had TMJ, and I've frequently sprained / strained my fingers, toes, ankles, and knees.

As far as GI goes, I have GERD, silent reflux, no gallbladder (I had severe gallstones), hiatal hernia that corrected itself, intestinal malrotation, IBS D, and intolerance to wheat, dairy, and alliums.

Maybe it's on the spectrum, but not necessarily HEDS. Not sure if I should pursue a diagnosis, or if specialists are going to dismiss me / find me crazy, but I do want answers as to why I'm Like This.

I also know MCAS is a more recent condition, but I have the trifecta of asthma, allergies, and eczema, and that includes random contact dermatitis where just touching my skin can give me a rash.

I just want to be realistic and be prepared when I go see my primary again. I don't want to seem like I am a hypochondriac, because these are all legitimate things going wrong w/ me.

Right now, I am officially diagnosed with:

Asthma, eczema, allergies, IBS, intestinal malrotation, b12 and vitamin d deficiency, benign paroxysmal positional vertigo, paresthesia

I've never seen an ENT doctor, nor a rheumatologist. I have seen a cardiologist and a GI multiple times.

[lifewithchronicpain]

I have a physical tomorrow, what fun. 😞

But I need some things addressed and now I can finally do so. My biggest concern is the new and unusual pain in my lower right abdomen. I thought I had a cyst, but actually I have one on my left. Knowing this I realized the pain is very different and now I’m concerned it might actually be my appendix in pain. It could also be pain from scar tissue from surgery in ‘08 to remove an 11cm cyst on the right. I did get pain from the internal scar tissue but I’m concerned the pain is too new and different to be that. I don’t think I have appendicitis, I think my IBS-C could be irritating it and that maybe appendicitis could result from that. I need a proper scan of the appendix to have peace of mind.

I also want to see an endocrinologist because I’m concerned about my appetite and hunger signals. I was suggested this before by a GI specialist but I was fresh from foot surgery and so I put it on the back burner.

Then there’s the fact I haven’t stopped producing mucus from a cold I had in spring, that is of 2023, so it’s over a year of this bullshit. I’ve already been on prednisone and antibiotics to treat it, and I got tired of doctors visits I decided to also shelve for the physical.

Then the issue overarching all of this is my insurance (which is a hybrid of Medicare and Medicaid which my state calls One Care) no longer covers my clinic. It hasn’t stopped me from doctors visits, getting prescriptions or having that ultrasound to determine if I had a cyst. But it is blocking my ability to get referred to a new pain clinic, and likely will prevent an endocrinologist referral too. I also worry the Insurance will stop covering what it still does. So I have to figure out which One Care plan will let me continue going to the clinic I have gone to since I became an adult. That’s 20 years.

And then there’s also the matter of what pain clinic I should try to see, since the one I was trying for is suddenly closing. Not only that, the hospital it is in and which I have also gone to my entire life (that’s 40 years) is closing because of the debacle with steward health care going bankrupt. A community hospital that I can walk to is going to be closed, I’m so mad.

And then there’s a whole bunch of little things and I just hope my doctor can keep up. I just hope it all goes smoothly.

[zanarkandfayth]

blah blah talking about my health cos I feel like it, ignore if you're just here for fandom stuff

went for my post-op follow-up monday and finally, finally got a fucking name for what's been wrong with me. am not going to bother googling for the official name again lmao but basically it's chronic (not acute) gallbladder disease. no stones whatsoever, just my gallbladder deciding to give up the ghost and getting inflamed over and over for years and scarring each time and that's why for the past three or four years food has made me gradually more and more sick to my stomach and left in pain after eating until last summer when it finally erupted into the pain that sent me to urgent care who sent me to the ER (yay, more debt I'll never pay).

on the one hand, I'm so goddamned relieved to finally have a diagnosis and KNOW that I'm not fucking imagining it or making it up after all my tests and scans kept coming back as negative/normal (mostly cos no stones, but who knows why the HIDA one showed nothing wrong), but on the other hand, I mentioned the nausea and pain to my GP when it first started and he fucking dismissed the nausea entirely as caused by my acid reflux and wanted to put me on medication for IBS "to see if it helps" without actually TESTING me at all for IBS, it was just because of the stomach pain and absolutely no fucking other typical symptoms (I refused, btw, after googling and seeing that it could CAUSE issues if you took meds and didn't have IBS) and I can't help but feel like it wouldn't have gotten nearly so bad if he'd taken me seriously from the start and referred me to a specialist instead of dicking around and doing fuck-all for a few years. and because I'm poor as fuck and have no insurance, finding a new doctor wasn't an option for me. ugh. hate the state of healthcare in this fucking country. so my relief is kinda soured by that.

anyways, it can take up to two months for my body to adjust and I might always struggle to eat certain things so I'm still kinda hrgh about it and food is still miserable right now, but if I could just get back to being able to eat most of my normal things I could live with that, so... fingers crossed I guess. also the incisions STILL haven't healed, though I finally got the steri-strips off, but tbh that's just made it even harder to not scratch... it's absolutely killing me, I need them to just scar so fucking badly hhhhhh.

also I still have my chronic fatigue and other health problems that I couldn't get my doctor to take seriously, so that's fun. but he left the clinic a few months ago so maybe whoever is going to replace him will be more willing to listen to me. I'm so tired of being tired and if I have to be tired, I want some fucking disability so I can at least buy my own goddamn groceries.

the end. I ate earlier so I'm actually feeling sick so I'm going to reread the last few chapters of my fic and then maybe I'll actually be capable of writing, if the brain fog isn't too bad. stupid fatigue.

[rosetyler42]

And many artists do that. They said they were also a teacher as well. (A famously difficult and yet underpaid and undervalued job as well.) But there are also many who do make money off art as jobs. Fashion designers like the ones who designed the jeans in your logo, writers, animators, photographers, illustrators, architects, filmmakers, toy designers, singers, making things to sell, videogame devs, even marketing design...some to supplement their income, some it's their full-time job. A number of these things make things we need possible, and others help bring joy. Why is that less meaningful than other forms of labor? And how is that any different than desk jobs aside from the fact you see them as being fun hobbies? Desk jobs are often mostly mental work too. Why are tech people and companies pouring so much into AI art if art is worthless?

(Putting the rest under a read more cuz this got long.)

Plus, not everyone is in your situation. You're most likely lucky enough to be able to find a job you can do (and keep it) that pays enough to live, even if you sell photos for extra income. Unfortunately, not everyone is able to do that, even if they have a job like the people in the pic. Even without considering disability and other factors, cost of living keeps rising while wages stay mostly the same. Places claim "No one wants to work" after people literally died or got too disabled to do their jobs anymore and make people jump through ridiculous hoops to even be CONSIDERED for a job. Alot of these hoops are designed to weed out people who are poor, disabled, minorities, etc. Even having a FAMILY is sometimes considered a liability. (Or the possibility of a family, part of the reason women sometimes have problems getting hired.) People see you as being less reliable because what if the family obligations get in the way of work? Not to mention being older and not as able to keep up with younger folks AND more likely to be disabled. (My father worked himself to DEATH of a heart attack partly because of this.) Let alone being fat, queer, or anything else. Being a woman, disabled, or being am ethnic minority SOMETIMES has workarounds, but even the fact we need THOSE speaks to how discriminatory the hiring process is. And ALOT of the queer community is disabled in some way. Whatever their other demographics. Particularly Neurodivergency, which the hiring and work culture we have now is PARTICULARLY hostile to.

And if you GET the job, there are some forms of labor disabled people can't do. Take me for instance. I have a heart condition and athsma. While I'm able to do alot, this can make heavy lifting and strenuous exercise difficult. There are certain aerosol chemicals I can't be near without protective gear like a mask, and my stamina is somewhat lower than a typical person. I have allergies and a tendency to get whatever respiratory ick is going around. I have GERD, IBS and chronic constipation, which can cause pain, discomfort and fatigue on bad days. Particularly when stressed. I also have ADHD, which can affect MANY things but most notably involves sensory issues, ability to maintain attention, multi-task, start tasks, switch tasks, motivation, emotional regulation, memory issues, etc. I can't drive. Possibly may never learn how to drive. Any number of these could make getting or holding down a job difficult. Ontop of this, we have costs and demands an abled person doesn't: I take ALOT of meds, both prescription and otc. I have medical equipment I use daily and see multiple doctors on a regular basis. Including specialists. I have to walk everywhere or take the bus, which takes time, money, and energy. I can't remember if I bought things sometimes, so I buy them again. Doing tasks can be difficult for me, even if I have to or even WANT to do them. While I did VERY well in school, I have not been able to go to college or find work for various reasons, including having taken care of family members who needed 24/7 help. And on some occasions I need to have surgery or invasive diagnostics, which both terrify the bleep out of me and take long recovery periods. And while I'm able to do many things myself, I'm on disability (which, incidentally, limits the income you can have) and have had to ask others for help sometimes.

And that's just myself, a young white cis disabled aroace, as an example. I have no idea what challenges those in the picture have, and neither do you. And as tough as things are, I'm lucky I have and have had what resources that I DO. Just like you are.

And not only does it make it difficult to WORK or LIVE, but to also do other things too, including advocate or donate to make things better. It's difficult to look out for other people when you're struggling yourself.

You ARE right, in that we shouldn't be taken care of just because we're artists. Or because we're queer or disabled or anything else. We should be taken care of because we're human and alive. We deserve to be fed and cared for because that's what humans DO for each other. What is the decent thing to do if one has the means. Looking out for each other and caring for each other is how we've managed to survive as a species. Why do you think social justice movements like Pride, socialism, feminism, and anti-ableism start in the first place? Or even support structures like family or friends? Because it's not healthy for ANYONE to have to work themselves to death just to survive, OR stress about where their next meal or rent is coming from when they can't for whatever reason. Or to try and tackle every problem in life on your own. Not to mention, but for the grace of God (or whatever higher power you believe in,) that could very easily be you.

In a perfect world, art would be free as something humans could just DO without HAVING to be paid for it. But unfortunately, that is not the world we currently live in. Like it or not, We DO live in a capitalist society that values productivity and greed over people's lives. That values "results" and "labor" over quality of life. Where art is seen as a commodity, luxury or skill to monetize if it's valued at all. And It's mentality like yours that perpetuates the very systems you claim to be fighting. The world would quickly become a dull, boring place if all artists followed your advice and stopped creating because of capitalism. And the poor disabled white (or any other ethnicity, for that matter) "e-hobo" queer artists are no less victims of the system than anyone else. Actually, they're normally MORE so since NONE of those things are valued by society aside from whiteness. And even THAT privilege only goes so far. Heck, you'd be surprised how easy it would be for YOU to end up in the same situation. Especially in today's day and age with Covid and AI photography. We don't make the movement look bad. WE'RE THE REASON THESE MOVEMENTS EXIST.

You want a world where art is free? Help us work for a work where no one HAS to sell their art to make a living. Where art is valued as art and not as a sellable commodity. You want disabled queers to work instead of asking for money online or complaining about how they can't? Help us work for a world where no queer or disabled person HAS to rely on donations to live. Where they can easy get and keep jobs they can do that will pay for their needs and not get passed over or fired because they're homeless, don't have money or access to education, have to take absences, etc. Or better yet where people can't be fired, kicked out, cut off or isolated for being disabled and/or queer.

In the meantime, either put your money where your mouth is and give these people money while brightening your own life, share the link so other people who are willing and able can find it, or shut up and let these people live their life in peace.

the look all the blue haired communist give you when they try their “i’m a non-abled intersex trans woman suffering from a plethora of diseases” excuse to get out of labour :

Why are these people, those who do no or refuse hard or meaningful labour, the face of these economic revolutionary parties?

[turnthepage11]

tw: medical discussion, mention of prescription drug use

Personal Post: Appreciate any words of encouragement but honestly just trying to throw my thoughts out to the universe.

I’m struggling so hard right now folks. For context: I am 25. I have a lot of medical issues, rheumatoid arthritis, IBS, ADHD, PCOS. And those are just my long term diseases. When I turned 18 I started having hip pain on my left side accompanied by numbness. I had assumed it was my newly diagnosed arthritis and dismissed it for a few years. Almost three years ago, I finally brought it up to my doctor and long story short, we learned I had a hip impingement which is when there is extra bone on the ball of my hip, making it hurt to walk.

I had surgery last summer for it and while they were in my body, they learned I had a pretty bad labrum tear (on a scale of 1-4, I had a 3) and they fixed it when they removed the extra bone because even though it was decently bad, it never showed up on any of my scans.

Now my surgery didn’t really fix any of my hip problems. My base level of pain was lower, but with any activity it gets pretty high, pretty quickly. (That was context, let’s get to the past 36 hours).

On Friday afternoon, I went to go sit down in my desk chair at school (you know, nothing wild) and as I sit, I felt and heard a loud POP in the front side of my left hip. I yelled so loud, one of the kids who had passed my room a few seconds prior ran back to check on me (one of my sophomores, aka my og crew from year 1).

I stood up immediately and it felt like a muscle had just cramped so I tried walking it off. Sitting hurt the most, followed by standing, then walking so I walked for thirty minutes with a pretty severe limp, hoping that it would slowly go away the more I used it.

It got a little better, not much and then I had to sit for two hours to tutor two students who were on quarantine. Then I had my hour drive home where I turned on my heated seats since usually the heat helps my hip.

Well. It made my lower back hurt INSANELY bad (when it hadn’t hurt previously. Or at least less than my hip had so I hadn’t noticed it). When I got home from my hour commute, I could barely walk and carry my backpack into the house, let alone get up the three steps into my parents’ house.

I took leftover Percocet from my surgery last summer to help with the pain Friday night and it took my 8 pain level down to a 5 and I finally managed to fall asleep.

This morning I woke up and my limp wasn’t as bad, but my hip still hurt and so did my lower back and I was at a 7 on the pain scale. Despite that, I went to breakfast with my family and took another Percocet just so I could see how I would feel around 3 when it wore off since my RA is usually pretty bad in the morning too but calms down by 12 or so and I didn’t want to be worn down from my RA pain and my injury. Even with the Percocet, I was still at 4/5 all morning.

I ended up falling asleep around 11:45 because I don’t sleep too much during the week combined with the med and woke up at 3 at a 7 on the pain scale. I asked my best friend who is a BSN if I needed to go to the ER taking all the above in consideration and the fact that the Percocet didn’t do too terribly much for my pain and she told me I needed to go asap ESPECIALLY because it was my surgery hip.

So I went to my rinky dink rural medicine hospital. They put me in a room for two hours and forgot about me until the doctor finally saw me on his list, came and saw me and said “I don’t know why the hell they put you in this room when I need you in a bed to test your range of motion.” (I was in an old closet with a phlebotomy chair.)

He did range of motion in my hip. Not the worse I’ve ever had but not great either. Said he felt how swollen I was in my hip and thought I might have retorn my labrum or even had one of the strings repairing my labrum last year break. The only thing he could do was a CT, not an MRI, to see if my hip or one of my vertabrae had came out of place. Luckily they hadn’t (though at this point I almost wish they had. It might have been an easier fix.)

He recommended I take three days off of work, go on crutches, and take it easy. I’m a middle/high school English teacher who is semestered by double periods. Missing three days of work is like missing six class days. I barely wanted crutches, I’ve walked like this for a day, how are crutches gonna help? But then I got a steroid shot and it made the pain a solid 8. The doctor kept checking on me and saw me crying so he gave me a shot of morphine and I told him I changed my mind, I wanted the crutches.

I’m hopeful that in the morning I’ll feel at least marginally better. I don’t think I will, but I’m gonna hope for it at least. He gave me steroids, Percocet for the week (which I’ll only be able to take at night because obviously I can’t teach kids while having Percocet in me), and anti nausea meds just in case. But I have to call my doctor who did the surgery for a follow up… which wouldn’t be bad except he’s four hours away. And he’s probably going to request the special MRI I got to confirm I needed surgery. Which I can only get done down where he practices. So that’s two sick days gone right there.

God forbid I actually need surgery to fix a tear FROM SITTING DOWN IN A FUCKING CHAIR. I’ll use all my sick time right there. (I only have 20 days and 3 personal. I take sick days for appointments often because of my specialist appointments and my work bestie is getting married on a Sunday in May so I’m taking a personal day for the following day.) I told my work bestie that the doctor wanted me to take three days off and she said to do it, I had the time and when I pointed out the potential for surgery, she cringed and agreed with what I said about sticking it out for the next three days.

And to top it all off, my parents are acting like I’m over exaggerating. I asked my mom to take my car and drop me off because my legs had started to go weak (which was the entire reason I went to the ER and not the pain. Because I assumed something had happened to my back for my legs to go weak.) She refused, so I drove myself. Was going to drive myself home until the doctor gave me a morphine shot. When I got in the car complaining about my hip, starting to cry about the recommendations, my dad just told me “that’s life kid, deal with it.”

I don’t feel comfortable unloading this on my coworker friends because I know this is a lot. But I’m just so… disappointed. I have lost thirty pounds this year, a major goal of my doctors but never really pushed. Got better at taking my medicine (thank you ADHD diagnosis and medication). But like, I am 25 and might have to have hip surgery… again. And my doctor had said if he had to go in again there was a high chance I would have to get a hip replacement because any additional repairs might be hard with how much damage I had done to my labrum already.

I’m tired, my body is exhausted, I’m already dreading the outcome and time off I’m going to be taking over the next month because of this. I’m annoyed by my parents’ reaction to the whole thing. I’m dreading work this week because I know everyone is going to say something about me being in crutches.

This just sucks folks. I was having such an okay school year until this decided to say “nah, sucks to be you.”

[justlettingitallhangout]

WARNING: THIS MAY BRING YOU DOWN. IF YOU’RE IN A GOOD MENTAL PLACE, CONSIDER SKIPPING THIS POST. I don’t know how to do a “keep reading” thing on mobile or else I would so people could just pass by without risking seeing it.

My particular situation isn’t so upsetting, but a bigger theme I’ll bring up is pretty bleak.

Also, this isn’t interesting. It amounts to me complaining about health problems. Here we go.

LAST CHANCE, JUST SCROLL BY:

I have gotten my health pretty well “under control” by restricting my diet so severely I don’t risk foods that cause symptoms. These symptoms are sometimes just excruciating cramps and constipation/diarrhea. Sometimes its like I wake up with the flu- congestion, body aches, feeling like shit. Commonly also is nasty headaches. I have experienced migraines, thankfully rarely and not because of food.

I have IBS (possibly crohns, stopped pursuing seeing specialist who suspected it because its so expensive and I’m basically functioning) and some issues with my heart (stopped pursuing them, heart doctor who has seen lots of my relatives told me to avoid triggers and only come back if it gets worse without triggers) so mixed bag of things between those that I need to avoid or risk the Bad Things.

For those of you familiar with the long ass list that is fodmaps, you’ll understand this the best.

I’m only “functioning” and seemingly fine to outside eyes because I never risk fodmap foods EVER. I’ve been eating in this restricted way since October 2019, before COVID started.

If a person is reading this and doesn’t know what that means, here’s a link: https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

(the stuff with the pink behind it means don’t eat and even a lot of the stuff in the green is in limited amounts)

SO it’s awful and I’m not actually getting everything my body needs to survive.

And lots of people don’t. I’m not actively dying. But my body hurts a lot and I suspect that if I could just eat more vegetables (I basically only eat green beans) then I’d probably feel a lot better.

Just note I also can’t have caffeine or risk my heart acting up, so of course no coffee but even tea I have to be careful what kinds and how much.

The tradeoff? As long as I don’t eat (or accidentally eat) anything I’m not supposed to, I don’t have bouts of INTENSE HORRIFIC PAIN and lasting sickness that prevents me from working or taking care of myself. That’s a win.

I also don’t get to have comfort foods any more. I can’t just go out to eat. Even if I had to stay long at work and I’m desperate for a little something- no. I could risk french fries from some fast food place but have to do extensive research even before that (Did you know McDonalds puts gluten in theirs for flavor?)

I don’t have the strength and figure I once did. I’m getting better with my image issues but goddamn it, its not enough to pay so much money to eat and have it be so much work to feed this body, it also can’t look and often perform the same ways any more?

I used to be really strong. I have a little strength now, but I don’t have the energy or drive to put effort in to get back to where I used to be without any real effort.

Had to buy new clothes because mine didn’t fit any more. I couldn’t buy that much because its expensive so I only really own clothes to wear to work now.

And right now is a flu like day with a nasty headache and sporadic intestinal cramps.

Do you ever feel down and just want to give in? Use that in any context you’d like. I’m feeling so defeated about food.

My household bought a pizza last night because it was easier and it was late. I ate an hour later because I couldn’t just eat the pizza and breadsticks BUT NOT BEFORE I had a moment of weakness and ate one skinny breadstick (the little caesars kind) and I knew I’d regret it but I was so hungry (I worked all day from 4:30-1pm and had eaten two little snacks, at this time it was 7:30pm)

Now, since Im feeling so intensely awful from one breadstick, I’m debating just going and eating the leftover pizza because goddamit, you know?

But I know that will only make me worse and only prolong the suffering. But right now, I almost can’t care.

I’m miserable today and I’m hiding as best I can so I don’t subject my family to my feelings (I can also hardly get out of bed) so I need to put this somewhere. I can’t just trap it all in my head.

If you read all that, you’re a trooper. I’d offer you something gluten-free dairy-free soy-free and safe for tummies but I don’t have anything for myself right now either. I’m also guessing anyone who read that is suffering too, probably newly and wondering how bad it can be.

It isn’t always like this. I’m happy with my decision more often than not to continue being fodmap free and waiting to start testing foods until it makes sense, but when I’m down I’m just really down. Not even as down as I used to be either, because the truth is I was suffering before too and didn’t understand why. In a way, I’m lucky it escalated like it did or I’d still be wondering why I’m in pain all the time with no idea the cause. Any questions, ever, feel free. I’m no expert, but I am someone who has been living with this for a while.

If there’s any other tags I should put on this so more people can avoid it, let me know. I’ll happily add them. I’m not really posting this so people see it, I just need to do anything not to keep it all in, unfortunately I can’t afford therapy and my insurance doesn’t cover it.

[heatherwitch]

Hi, I tried searching but couldn’t find anything so sorry if it there and I missed it. Do you happen to know of magick to stimulate/attract medical diagnosis? I have so many ailments, pain, headaches, IBS, hypoglycaemia episodes, ... but the doctors can’t find anything. They tell me it’s in my head. It makes me so sad and tired and I wish they’d find something so it can be treated or at least that I’m not dubbed a hypochondriac.

Hello! I’m very sorry you’re dealing with that, sadly it’s a tale most of us can completely relate to. Many doctors either have very broad knowledge or very specific knowledge, both of these can hinder a proper diagnosis. These people see you for short periods of time, and even those who know you better haven’t experienced what you have. I believe you and I truly wish you the best in getting the answers and help you need!

A few tips I wish someone had given me:

I had my best luck by asking around and talking with others who went through the long diagnosis process and had doctors to recommend.

Find someone willing to run a massive amount of blood tests to figure out what you’re dealing with and how your body is doing (regardless of illness/symptoms). Deficiencies, imbalances, infections, etc. Sometimes these things are unrelated to or caused by whatever you’re dealing with and treating them can help you get a better idea of more accurate symptoms. 

Keep a list of medications you’ve been prescribed, doctors and specialists you’ve visited, and diagnoses you received.

Track your symptoms. It’s helpful to have a baseline and then compare with how different meds help/hinder.

Print all medical/visit summaries, blood test results, etc. and keep in a binder. I separate by timeline/clinic. This is immensely helpful for reference (you may remember it all now, but you won’t in a few years) and can help you be fully prepared when meeting a new doctor.

Before visits I make a list of everything I want to cover and what I want to get out of the visit. There’s nothing wrong with coming prepared and referencing it. Better that than to blank and have to wait months for another appointment!

Sigils:

Others understand and accept my illness

My hospital visit is productive and successful

My doctor’s appointment goes smoothly and yields helpful results

My doctors listen to and believe me

Spells:

Spell for clarity of mind & communication

Glamour for confidence in speaking

Glamour spell to help you be seen as someone to be respected

Glamour for your words to have impact

Also look into spells for manifesting and attracting what you want, and personalize it/make it what you need!

Again, wishing you the best in getting the answers and help that you need! You deserve to be believed and respected. 

[saynotoendo]

11 years, at the tender age of 14 when I took my first period I just thought I was like any other teenage girl and coming into her womanhood. Now at 25 and the journey I've been on with my body I can look back and see the signs that things just weren't right.

I had painful periods from the get go but always thought that was normal, sometimes I went months and months without a period but that was put down to me being severely underweight in my prepubesent years. When I got to my late teens, around 17/18 I had my first smear, referred to gynae who done biopsy after biopsy. Over the course of the next few years I attended hospital appointments or was rushed to A&E. Here I was diagnosed with being lactose intolerant, IBS, one doctor even told me it was just an STI without doing any tests to prove this. I had also been in a relationship with the one man for 4 years at this stage so that then caused problems with my home life. I went to my own GP who cleared this up as I did not have an STI. Given the lactose intolerant and IBS diagnosis I changed my diet and also cut out meat. Doctors didn't believe or understand the pain I was so I was given a lifetime of meds to try and manage the pain but nothing. I now worked as a Care Team Manager in a nursing home, when I was on shift I was in charge of a team and residents medications. Some nights during my shifts I would have to leave or go straight to hospital, this resulted in loosing the one job I loved and really had a passion for. And my relationship had also come to an end.I knew then this was ruining my life.

I went for more tests with specialists and was finally diagnosed with Endometriosis, a thing I had never heard of before. This is when it got rough on me.

In March 2020 I was put under a medically induced menopause, for those of you who have been through the menopause you know this is not an easy experience, but mine came fast and rapidly. I had all the symptoms of menopause within 2 weeks and it took a hard toll on my body. I was admitted to hospital within the first month of this buy after the next 2 injections my body became accustom and then it was time to come off them, I was started on medication to level out my natural hormones and at this time my body was all over the place. I was told I WOULD NEVER BE ABLE TO CONCEIVE and as I was 24 this was a lot but now it was just something that came with the disease, I had my hysterectomy booked for November 2020.

I got on with my life. Working, I had met a guy, I was trying to live my life as much as I could around the disease. Then I found out I was pregnant in October 2020, 2 days before my 25 birthday. HOW, HOW COULD THIS EVEN BE HAPPENING? The father of my baby new of my illness and the fact I was told I couldn't have children so this was a shock to everyone involved. He was not as excited or amazed as I was and didn't want to know. But at this stage I did not care, I had a miracle, I could do this on my own with the help and support of my fantastic family.

After test and exams with my local hospital I was told there was no heart beat anymore. This killed me on the spot. I went to a private hospital for a second opinion a week later because nothing had happened, no sign of miscarriage happened. They found my baby and my babys heart beat. I was numb, completely numb. How could they have got it so wrong. I took off work, stayed on bed rest for the next few weeks and began planning for our future, it became apparent I was ready for this and nothing was going to get in my way!

3 weeks later I had another routine scan with my local hospital, skeptical, I went and again no heart beat. They explained the babys growth had stopped and the heart beat was gone. I couldn't believe my ears, AGAIN. Over the next few days I hid myself away, I cried, screamed, sat in silence. The it happened. At half 6 in the morning I had my baby. For it being a fetus and still so small, it had features. It was developing. The pain was like something I had ever felt before physically or emotionally. For days I locked myself away, had I done something wrong? All that was going on in my head was there was a reason and the reason was I wasn't meant to be a mother, I wasn't deserving of such a luxury in life.

I went back to work to try and get my mind off things and back into routine. I reviewed a phone call from a private hospital who wanted to speak to me, we made an appointment for a consultation. I met with an endometriosis specialist who, for the first time, explained everything to me on great detail and assured me it wasn't my fault that I had a miscarriage. 76% of women suffering with endometriosis miscarry. He was absolutely dumbfounded that I had been booked in for a full hysterectomy and told all the things I was told. This man gave me an apology for another hospitals mistakes, something they were yet to do.

On that very same day he booked me in for laparoscopic excision surgery.

The day arrived, and off I set for the hospital. Finally someone believed me and wanted to help me. I was nervous but excited. I got there and after a few tests, I was taken to theatre, everyone was so calm and so lovely.

The surgeon and anesthesiologist made jokes about my tattoos as they prepared me to be put to sleep, I drifted off laughing.

I woke in recovery a short time later with the surgeon at my bed side. I was groggy but I felt immediate relief. He explained what he had done during my surgery. I thanked him and went back to sleep. I then woke in my own room and the first thing I done was pull up my gown, only 2 incisions were made, very neat!

So this is me writing this the day after I got home, I needed to vent and others who are at the start of their journey need to understand. It's fake and it is far from easy.

1 in 10 women suffer with Endometriosis and most suffer in silence like I did for a lot of years because I was uneducated. I feel my story may even help just one woman!

[ndragoon]

It still sucks having doctors that won't cooperate, with little to no options to go elsewhere.

When you have welfare insurance, you are stuck in this narrow aisle of doctors you can go to and going out of network means you have to pay out of pocket.

My GI reluctantly diagnosed me with "maybe IBS", not even an actual diagnosis. This was simply because with Crohn's, one of the "signature criteria" is "massive weight loss", and I've basically been the same weight since before I left high school 11 or so years ago. I can literally feel the inflammation in my backend through the softer tissues, but clearly that doesn't matter. He'd rather keep an eye out for my "fatty liver" despite no test showing I even have signs of it simply because I'm overweight.

I went to an eye doctor and she told me that I have severe astigmatism and could never wear glasses. It was something that would keep getting worse even though I don't have this other condition, while describing that I'm dealing with exactly that condition. She told me that I am forced to wear these contacts that will need to be replaced and adjusted often for the first 6 weeks or so, and would cost me $425 out of pocket WITH my insurance. I now need to wait another 6 months to even get a second opinion.

The endo just did a call checkup last time, and did it earlier than we were supposed to. He wanted to see how my hormone levels are, and they were apparently still so low that he didn't believe that I was even using the gel. And despite using 3 packets of the 1% offbrand gel daily, my testicles are still shrinking to the point that only the tubes between them and the ones that go inside are the only things I can feel in there. My drive went from taking care of things twice a day to maybe one time every week or two. It's still so numb that I ejaculate without orgasming, and anal stimulation does nothing, even with a vibrato made for men.

I have to find another psychiatrist because my last one was bad for my health. Told me all of my problems were because I was fat and lazy, because I let other peoples opinions of me matter too much, because I "want to go on disability" instead of proving my self worth though getting a really well paying job, and because I refuse to follow any kind of routine. He refused to even test me for ADHD because I didn't have a job, and refused to treat me because I was clearly just going to pop pills all day out of boredom since that's what all unemployed people do, apparently. He refused to test me for autism because "you are just trying to explain away your trauma" after asking me why I think that and giving me enough time to almost finish one reason before interrupting.

My neuro is good, as long as I actually get my main doc. Her aide was very unpleasant. Talked about how I'm tired despite the B12 supplements and the CPAP I have to deal with every night. How I can't remember anything to the point that I doubt I ever knew anything at all, how just thinking feels like drudging through wet concrete and fatigue makes it feel like it's hardening, and he just told me that these are symptoms of being obese. I need to stop eating so much junk and actually get outside to exercise more often. It wasn't until I kept pushing that he even bothered with an MRI (which turned up nothing, anyway). And through the request of my doc I need to see a specialist for my lupus to get it treated, and if I still feel like it, she gave me a referral for a neuropsych analysis for autism and ADHD (which I hope insurance covers, since I keep hearing that it's not, and it's ridiculously expensive on top of that).

So for now, I get to deal with multiple bathroom trips a day, having to dance around foods I want to eat because I can't eat them anymore, and then nearly cry myself to sleep because just laying there on a comfortable bed is enough to hurt all of my joints, only to wake up the next morning and roll the dice while I figure out what's going to work today and what I have to work around.

Not to mention my family, who is convinced that it's just because I'm so overweight. They tell me almost weekly that I just need to lose weight and I'll feel a lot better. So much so, that they expect me to eat nothing but one can of cream soup a day with no noodles or any additives like crackers.

And I'm sorry for anyone who actually reads these. They are long and whiny, and I really should just deal with it all and pretend I'm a happy, functional adult.

[lgthatawkwardgamer]

😭

I just saw a Neurologist today who told me I didn't have MS, which was ALREADY confirmed by the MS Specialist I saw the beginning of this month. I also told him most of the testing he wanted performed had been done before. His conclusion was that I was perfectly healthy, but have depression and anxiety and that he could prescribe me medication to make me quote-unquote, feel good 😒

I could have told him I have anxiety, but most of it is due to PTSD from the symptoms I've been having for over the course of a year, because I can't get a proper diagnosis. At this point, I honestly feel like I'm going crazy and am losing all hope in doctors. I'm going to continue my vegetarian diet and doing yoga. I would be appreciative if anyone can give me any kind of insight, suggestions, or just help me feel like I'm not alone in this fight. I feel like no one understands what I'm going through.

I have had:

Random shooting pains (hasn't happened in a while)

memory problems (forgetting things, trouble finding words for things, and often use the wrong term for things even though I'm thinking the right one)

Numbness and tingling in legs (this has stopped since last November)

Burning in feet (extremely rare)

Leg jerks (I think maybe myoclonic jerks, only in left leg)

Pain in muscles and joints (I think this could possibly be restless leg syndrome)

Dysphonia (very rare)

Heat intolerance

Working out makes leg weakness worse

Occasional headaches

Eye pain (occasional)

Fatigue (random, and happens more when overheated)

Leg weakness (more in left leg, and has stopped since changing to vegetarian diet and doing yoga)

fasciculation (rare)

Ibs (I believe because I've never had stomach issues before)

Those are the symptoms I can think off the top of my head. My previous doctors said I could have conversion disorder, but I have found that's an outdated term and it is now known as Functional Neurological Disorder. But my current doctor just said I was perfectly healthy and blamed my symptoms on depression and anxiety after seeing me for all of four minutes each visit. He's seen me twice.

The treatment of doctors bother me more than the actual symptoms, and at this point, I'm at a loss on what to do. I went to the ER Sunday night because some symptoms came out of nowhere and scared me because I had a sharp pain in my left side that made me double over, and my leg started to jerk excessively. They ran a toxicology test for illegal drugs without my consent. I guess because my left leg was twitching, even though I told them the only drug I've ever tried is marijuana and rarely use it because I don't like the way it makes me feel. Btw, all the tests came back negative. They gave me Ativan because they said it would help me relax and stop the leg jerks, it helped my anxiety, but the leg jerks continued. They didn't tell me what drug they were giving me before or what the side effects could possibly be until I asked them. I felt like I wasn't even a person and did not like the way I was being treated.

[becoming-persephone]

Crystal Herbalism - It Takes Guts To Love Yourself 

My relationship with my stomach has always been unbalanced. From an eating disorder to digestive issues, my stomach has been the core to many of my struggles. I used to hide my stomach, never wanting to show the rolls it created when I sat, or the way it moved when I ran. I’ve always wanted to keep it contained and hidden, I never found it appealing. I used to pull at it, suck it in, cover it up, It was always the center of my attention. Since seeing all the women and girls in the media with their perfection, I found my flaws to shine even brighter when I’ll I wanted was to dim them.

It wasn’t until I worked at Crystal Life Technology in 2012 that I discovered the bodies energetic connectors, the chakras. Diving into the kaleidoscope of colors that my body radiated, I found that I had deep issues with my sacral and solar plexus. The hues of orange and yellow pulsating with such brightness to get by attention. By reading books and speaking with shamans, witches, yogis, and gurus, I was able to collect information that I needed to begin my journey of healing.

It didn’t really matter how many crystals I bought or how many essential oils I used, my sacral and solar plexus needed my undivided attention. They needed me to wade through the darkness in order to obtain their wisdom.

Working with the past is never easy, it’s scary, heavy, and a type of darkness that even the light struggles to penetrate. When traveling back through your roots, you have to do more than observe your childhood, you have to venture into the abyss of past lives, karma, and memories that don’t feel like you’ve lived in them. It’s confusing, a struggle of identity, but when you are able to lay in the darkest part of the your souls ocean, floating above all the wreckage, it’s in that moment you uncover your strength.

It took many years to heal. And in some ways I still am. I don’t believe healing ever stops, your wellbeing will always need an extra dose of your love and focus.

With all that devotion, I have grown to love my belly. My core. My center. It has become the home of my spirit, a place where all my creative fire brews. I lay my hand on it at night and get teary, saying I love you and I am sorry for the pain I’ve caused. My belly has is stronger and yet tender, awake and yet still dreamy.

All my body image issues have melted away, leaving stains across my body, collections of poetic stretch marks and love letters of cellulite. Each morning I gaze upon their enchanting presence, a source of self made magic.

It Takes Guts To Heal

Over the past year, I have resided in the cave of my body, listening to the current tempest brewing within my stomach. I didn’t know if she was angry at me for all the pain I’ve caused her or if it was some type of energetic awakening. Turns out, it was digestive issues. My stomach became bloated and pained. I found myself disconnecting again from the loving relationship that I spent years building. All within a couple of month I felt the walls begin to rise again, cutting off communion between my mind, soul, and gut.

It took me a few months to realize that couldn’t heal this issue on my own. After a couple doctors visits and blog tests, I was referred to a GI specialist. I was so nervous that I was going to have to change my vegan lifestyle and that every food I loved I wouldn’t be able to eat again. The stress of not having control was exhausting. With some deep breaths and a long-awaited visit to the GI, I was told I had IBS and I needed a colonoscopy. Now, in my naturalists heart, I was thinking this was all unnecessary because I ate so healthy. It was a mix of anger and confusion, but I decided to trust the doctors and loved ones because I couldn’t stand the pain anymore, it wasn’t my burden to carry.

It was one of the toughest journeys I have ever ventured on. I wasn’t able to eat for almost 2 days and I had to drink this indescribably horrible liquid. I was not able to sleep due to the nausea and cramps, making me so worn down that I was barely able to do anything.

The process completely drained me energetically, physically, and mentally. Some may call me weak, but during the time of no food and forcing myself to drink something, all my past traumas with my body were brought back to the surface. I was having to work through those as I laid in the bath dizzy, dehydrated, and sleep deprived.

The day of my colonoscopy I cried. I wanted it to all be over. I wanted to get back into the flow of my routine, yet laying with my blue gown on, IV in, I knew that the “adventure” wasn’t over. After the procedure, the nurse told my boyfriend and my delirious self that I was born with a twist in my colon, causing me to not be able to digest food as easily as others.

A part of me was relieved that I was able to find out what was wrong and the other half of me was defended by the thought that this was a lifetime commitment. I went home that day craving bread, water, and sleep. I still don’t have all the answers, because I have some upcoming doctors visits to unfold what was found during the procedure. I have begun the process of reconnecting with my stomach, listening and feeling. The first day back on my yoga mat, all I did was stretch, slowly moving with my muscles and breath.

That evening, I remember standing in the shower, the hot water like a river on my skin. My palms pressed gently against my belly, breathing in and out, extending and coming back home. My palms never left my belly that night. I found comfort in the warm touch, an unspoken promise that resonated in my core.

[ghoulgums]

I know I haven’t made an actual post in a while but oh my god my health is bAD

so I’ve had abdominal pains for the past year and a half, they started off quite far and few between and now they’re a daily occurrence, I’ve also started getting the pains in the sides of my ribcage (primarily the left side) and chest, they’re stabbing pains that make it hard to actually stand up sometimes and can occasionally make it difficult to breathe as inhaling sends painful shocks. I’ve been tested for helicobacter, tried all kinds of tablets, ibs/ibd/crohns/celiac have all been ruled out, been for blood tests and even an ultrasound all of which came back negative. I’ve also taken beta blockers. the doctors won’t investigate any further.

I’m having to go see an ear nose and throat specialist as my doctor is concerned I may have throat cancer (I believe that they’re cysts so I’m not horribly concerned) as I’m showing lots of symptoms that relate to the disease itself, I am nervous to go as I’m not a massive fan of hospitals and I feel as if I’ve been let down by doctors frequently since living here.

I vomit a lot, randomly throughout the day (but especially night time) I get super nauseous and sometimes in the morning I find myself upchucking bile, sometimes after I eat it just doesn’t stay down and I go through phases of being super hungry and barely even being able to think about eating.

my anxiety is at an all time high, every noise I hear I fear someone’s going to break in (or trying to), I’m barely sleeping and when I do sleep I find that I’m having nightmares more often than not and wake up everyday feeling as if I have a hangover despite not drinking alcohol. I’m also getting really dehydrated and my nails are pretty much falling apart and my hair started falling out.

I recently went to the doctors about these issues and they were very unhelpful, when discussing my mental health (which has been a rocky journey) I was told that it sounds as if I have a pd but that they can’t help me and that I should go for anger management (even though I don’t need it).

I’m really struggling with life at present as being in both physical and mental distress is greatly affecting my quality of life and I don’t have much of a support system to help me get through it. I feel as though I’ve exhausted all of my options and I know this is a bit far fetched but does anyone else struggle with these sorts of things? and if so, how do you cope with it? I’ve gotten to the point where I just don’t feel as if I have anything left to live for and I don’t want to keep feeling this way.

[aikainkauna]

Fatigued? In pain all the time? The little-known illness that is far more common than we’ve previously thought, especially among geeks.

This is going to be a bit long, but it's so incredibly important, and so very much not just a personal issue that I hope you will read it (and hopefully, also share it). I'm choosing to speak about this now because this is an insanely unknown, disabling and yet seemingly a fairly common illness, and I want more people to know about it, especially as it affects geeks--geeky women in particular. I’ll talk about my own variant briefly at the beginning, but don’t stop reading there, thinking this is just a personal post--there are lists of symptoms and resources at the end that I urge you all to look at, because they are *frighteningly* common.

I and the doctors have finally found out I've got Ehlers-Danlos Syndrome.

Which means there is one, or there are several, genetic mutations in my body messing up the build of my collagen, collagen being the glue that holds your body together and which is found practically in all your tissues. So, technically, anything that can go wrong with your body might do *exactly* that, because that b0rked collagen is everywhere. This is why I've always been not only hypermobile (being good at yoga and able to bite my toenails and tie myself into knots while sitting down), but easily fatigued and have had trouble simply sitting, let alone standing or walking, because my muscles have to strain like crazy all the time to compensate for my connective tissues being too wobbly. (Every time I've participated in guided meditation, the exhortation to "sit up with your back straight, your body as relaxed as possible" has always been absurd to me, because I can't hold myself upright if I don't tense my muscles. Try it: lightly tense all the muscles in your body for a bit, and see how long you can hold that, and you will know what staying upright is like for someone with EDS). It's been said that having it is like the body having to do strength training with weights all the time, except, unlike on a normal person, the muscles never get to rest and recuperate fully (except during sleep, and even then perhaps not completely; to make it even more fun, sleep disorders are a common manifestation in EDS). I sprain things all the time--I do my back in even in my sleep, and get trapped nerves/sciatica just from walking; winter clothes, let alone bags, are exhausting for me to carry even for short distances. For me, lifting a coffee cup, due to the laxity of my connective tissues, requires the same amount of muscular exertion as it requires for a healthy person to lift a full pint. Et cetera. Plus all the other weird ailments, which I'll get to in a bit.

But the main reason I'm telling you all this is that you really, really, *really* ought to read up on EDS. The whole world does. But especially if you, or someone you know, suffer(s) from chronic fatigue and muscular pain and are bendy--*because it looks like this is actually the illness behind many (not all, but many) fibromyalgia and chronic fatigue syndrome cases.* I repeat, *this is now assumed to be the most common cause of fibromyalgia and CFS.*

And then there's all the other EDS-induced stuff, all freakishly common among geeks. Here’s a list of some of the most typical symptoms:

-Bendy? "Double-jointed?" Good at yoga (even without practice)?

-Gut problems/IBS? Leaky gut?

-Serious fatigue, unrefreshing sleep, body feels like it's made of lead? And is it unexplained by other conditions (such as a dicky thyroid or anemia)?

-Sleep problems, anxiety/panic attacks/PTSD, autism spectrum, AD(H)D?

-Bad PMS and awful reactions to the Pill and other progesterone preparations, health crashes after pregnancies, dysmenorrhea with godawful cramps (like you're giving birth to a demon baby every month), endometriosis, fibroids, pelvic pain and other gynaecological issues?

-Allergies by the bucketful? Multiple chemical insensitivities?

-Weird heart thumpages, blood pressure issues, fainting when standing up?

-Early-onset problems with eyesight?

-Can't go numb from anaesthetic, and/or are hard to put under for surgery (this is great fun)?

-Feel pain more intensely than other people (developing needle-phobia from horrid experiences when having blood drawn or being put on an IV drip)? Are all dentist trips and having gynaecological exams (even sex and wanking at times!) a nightmare?

-Or, as a bonus, has the weird pain response made you kinky or just crazily responsive to acupressure/acupuncture? Or just caresses?

-Have you got weird and/or excessive scar tissue formation? Keloids from piercings? Have your wounds healed badly; after surgeries, have your stitches torn spontaneously?

-Got hernias, squashed-up internal organs, including a heavy/tilted uterus, breathing problems like your lungs are squashed (but asthma inhalers don't seem to help much)?

-Weird bruises, and you have no idea where they came from? Excessive bleeding (including bleeding buckets during periods)? Varicose veins at a young age?

-Flat feet? Funny little round, soft bumps (piezogenic papules) on your ankles? Need sturdy shoes with high tops and arch support? Find it difficult or impossible to walk in high heels, due to wobbly ankles and/or the muscular strain it puts on the whole body?

-Constant sprains, muscle pulls/tears, dislocations, subluxations (=partial dislocations; just something going 'crunch', like when the bones of your hand or your vertebrae seem all scrunched up together and you need to pull them open), trapped nerves, monster headaches? Growing pains? Pressure in the skull?

-Just. Hurt. Everywhere?

-Weird adverse reactions to medications that are way worse than ordinary side effects, completely intolerable and/or causing permanent damage, even life-threatening situations?

-Even queerness/gender-atypicality (I am not joking; it goes with the neuropsychiatric profile)?

Guess what, they're all related to this exact damn thing! And just how common are they in fandom, among geeks?! Right? Weirded out yet? And this is *far* from being an exhaustive list, because again, this is a multisystem disease which can technically affect pretty much all your body parts and their functions. But if you said "yes" to several, take a deep breath and keep reading. Or if not, hell, keep on reading anyway, because it's likely you know someone with this thing--it could be as common as 5%-10% of the whole human population.

Even if you are born with this rubbish, people go undiagnosed for decades (I only got diagnosed at 38, and I’ve been sick ever since childhood!) and since it mostly affects women (although guys *can* be affected), it's ignored and/or psychiatrisised by doctors. And since the female body is a chaotic body horror movie anyway, many have just thought it's normal to always have little sprains and crunches everywhere all the time, and that the fatigue just has a merely neurological basis. That it's just depression or a part of having been born with XX chromosomes. But it isn’t.

And another main reason that it goes undiagnosed is the persistent myth that EDS *always* has to involve extremely stretchy skin and extreme hypermobility, which is categorically *not* the case for everybody. Even the sodding Wikipedia article (misleadingly) only uses photos of *extreme* hypermobility and skin stretchiness, of the usual circus performer contortionism EDS has traditionally been associated with but which is NOT WHAT YOU NEED TO HAVE TO HAVE EDS, I repeat, YOU DO NOT HAVE TO BE A RUBBER PERSON TO HAVE EDS; you only have to be bendy and exhausted and ill. There are some people with it who are even *stiff.*

Thousands, hundreds of thousands of people remain undiagnosed even if EDS/hypermobility-related illness seriously messes up their daily lives--it can be debilitating. So, please, do yourself and your friends a favour and spread the word, and check out these links.

When to suspect EDS (blog discussion, also linking geekiness to this thing):

http://ohtwist.com/when-else-to-suspect-ehlers-danlos-syndrome

An overview on when to suspect, by a specialist (Dr. Bravo, PDF format):

http://ohtwist.com/wp-content/uploads/2018/01/DrBravoWhenToSuspect.pdf

Good brochure:

https://www.chronicpainpartners.com/brochure/

Another overview from the same site:

https://www.chronicpainpartners.com/what-is-eds/

Hypermobile EDS diagnostic criteria, with pictures showing how the bendiness level is scored (see how many you or your friend can do):

http://edsresearch.weebly.com/the-brighton-score-and-the-beighton-score.html

Good infosite:

https://www.edhs.info/understanding-eds-h

Pictures of a woman with typical hypermobile EDS, which is far more common than the actual contortionist stuff, and thus goes unnoticed:

https://mastcellblog.wordpress.com/journey/edsphotos/

A good overview of the problems hypermobility can cause by a specialist doctor who knows what up. This made me pretty much scream at the screen because I have one of those exact types of insanely painful mini-hernias that some doctors don't believe are there because they are almost impossible to see with normal imaging, but which my gyn saw during laparoscopy (PDF format):

https://www.dynainc.org/docs/hypermobility.pdf

Why hormones, progesterone in general (contraceptives, pregnancy, PMS) screw up the hypermobile body and may cause serious damage:

http://hypermobility.org/help-advice/hormones-hypermobility/

The official site of the biggest, worldwide EDS/hypermobility organisation:

https://www.ehlers-danlos.com/

UK support, including a toolkit for GPs on how to handle EDS:

https://www.ehlers-danlos.org/

Finnish EDS association:

https://www.ehlers-danlos.fi/

More info in Finnish, but this also has an embedded video clip (old but neat and short) from US telly (in English) to illustrate a family living with the disease:

https://eds-group.vuodatus.net/lue/2018/01/mista-voin-loytaa-tietoa-ehlers-danlosin-syndroomasta

(Hey, where have I seen eerie, elongated moves by a tall, bony guy before?! Yes, there are variants, like with the related illness, Marfan Syndrome, where people basically Look Like Cesare.)

And last but not least, the brilliant Dr. Sharon Meglathery's RCCX theory, which ties up all those illnesses I and others have noticed clustering around sensitive/artistic/neuroatypical/queer/geeky/triggered by everything folks, such as hypermobile EDS, fibromyalgia, endometriosis, allergies, IBS, sleep issues, stress hormone (adrenaline, cortisol) issues, CFS/ME, oh, you *know* the type when you read it. It's like a list of the usual Tumblr issues, for crying out loud--she might as well have called the PTSD-prone psychiatric profile that underlines these specific gene weirdnesses as "Triggered By Everything." Only it explains the links to the severe physical illnesses as well, and how and why they relate to stress hormone overload and why, thanks to problems with progesterone and cortisol metabolism, the physical illness stuff screws geeky women over more often than it does geeky men. And you owe it to yourself to read it.

https://www.rccxandillness.com/

I don't often say this, but reblog to save a life. These are geek illnesses, *our* illnesses. There are forms of this stuff that are lethal (causing stroke and heart attacks and organs going boom out of the blue at a young age), and the amount of suffering it can cause is ridiculous--I would have lived my life in a drastically different way, and would have never got so ill from the wrong medications and life choices, had I known I had EDS. (Just don't call me a "spoonie;" I'm not a fan of that thing--I'll explain later. Call yourself whatever you like; however, I'm still a ridiculous arctic chicken just as I've always been.) But there are still thousands of people out there who have all these symptoms and yet have never heard of this stuff, and for whom this knowledge can be life-changing, so *please,* spread the word.

Thank you.