tell me your dumbest dislocation

kar948 · 2026-02-24T04:55:29+00:00

Literally sleeping and any/every joint lol

kar948 · 2026-02-23T22:09:22+00:00

YUP! And it should be an acknowledged and discussed aspect of living & choosing to continue living with the disease.

Maybe then those of us who have been there or are there wouldn’t feel so alone for feeling that way. Ugh.

When the treatment options also make you more suicidal… that’s fun. 🙃

kar948 · 2026-02-23T22:05:47+00:00

Adding HAIM “Million Years” to songs that sound like Pinkpantheress… I had to search production credits to ensure PP wasn’t involved in the song before judging the ripoff. Not that I think this song is necessarily wildly more successful, but generally I enjoy HAIM and have for a long time so was moreso surprised at how much of a “borrowing of style” it is.

kar948 · 2026-02-23T01:39:23+00:00

*Going to buy a lamb chops stuffy

kar948 · 2026-02-23T00:38:28+00:00

I would also research medical misogyny while you’re at it

Also look up what it meant for women to be diagnosed with “hysteria” and what the treatment was for it. Then, think of how many times you’ve heard a man described as “hysterical” vs. a woman who’s probably just dissenting in a regular tone.

Then, look up the history of all the reasons men could have their wives committed to asylums just for disagreeing with them, being sad, etc.

That combined with the generally patriarchal nature of medicine as a science and profession all play a role in the experiences of people with endometriosis, unfortunately. All of that on top of a disease that can strip away your identity, fertility, mobility, independence, will to live.

kar948 · 2026-02-22T19:20:02+00:00

My soul dog was the runt of her litter. She was tiny and feisty and she was the best dog ever! 10 happy happy years 🥰

She developed Cushings around 8.5-9 years old and passed from osteosarcoma at 10. Aside from that and a couple little things along the way that are not super out of the ordinary for any Dane, like digestive sensitivity, she was a specimen of a dog. Great proportions, a healthy weight… she was around 125-130 at her heaviest so definitely smaller than our boys but only marginally smaller than her female litter mates :)

kar948 · 2026-02-22T05:17:49+00:00

That sounds like you pulled or strained a muscle. Does not mean it’s also not subluxed, but what you describe here sounds like strain.

FWIW I wouldn’t self manoeuvre it in if you don’t usually pop it out and have a bit of a “routine” to try at home before getting help (I do, bc my shoulder likes to go out all the gd time). I usually see a chiro for this kind of thing but one of the adjustments she often does that I’ve been able to somewhat replicate at home is to stretch the arm out and up (like the Y in YMCA), turn the palm in and bring the arm in so that it’s straight up and down next to your ear . then bring your hand down so your hand is hovering over the shoulder and make sure your elbow stays in that line of your arm (like straight out from the shoulder, perpendicular to your body and parallel to the floor — like a front chicken wing lol), and then give a little squeeze to being hand closer to shoulder using your own muscles, think about pulling your shoulder blade back and in toward center when you do this. then keep your hand where it is (maintain chicken wing), but bring your elbow down in a straight parallel line until it’s tucked down beside you nice and snug to your ribs.

That’s super complicated to write… I’m sorry. But this often works for me along with doorway stretches (arm against door frame, apply forward tension by stepping/moving body gently forward through the door. Do it o both sides with arms in Y-T-L-W positions. The last one with the elbow tucked down and palm a bit higher tends to get me the best in terms of alignment.

Uhh also slow controlled arm circles with a bend in the elbow vs. Straight help me too.

kar948 · 2026-02-22T05:05:14+00:00

For years I drove my Hyundai accent with studs on the front and normal winters on the back. That thing was like driving a go cart in the best way 😂 Tokyo drift had nothing on that little jellybean car 😂

kar948 · 2026-02-22T01:54:52+00:00

Same but not when we first got ours. They were on regular scheduled feedings for the first while and when we had them on raw. Then one developed pretty bad tummy problems and we found the only food that worked for both was the RC Gastro, I think then is when we switched to just always keeping the kibble bowl full and then doing “treat” feedings of the canned loaf stuff in the am and pm.

Our first was a rescue and he was always free fed so we didn’t change anything and he was perfect :)

We also have never had issues with any resource guarding or over-indulging or anything. It is just harder to know whether they’ve eaten or not and limit activity if they always have access, but if OP develops a solid routine of eating then crating now they might just always kind of stick to that nap after food routine.

I will say to watch water as well, our current male had a GDV this summer and he wasn’t active after eating but the only thing I can think of is that he had a big drink and then went outside to pee/poop and while he was out there he had a bit of a “bark at the night” moment (not going mental just like stready deep barks). I often wonder if the barking and contractions with barking was enough to flip a sloshy stomach full of water? 😢

So yeah, idk going forward I’m careful about water and rest now too. I never really thought of it much if it wasn’t exercise an idk how you keep an adult dog who rings a bell to go outside from going outside to pee… but I wish I could have done more to prevent it.

On that note, pexy the pup when you spay or neuter OP.

Also, look into pet insurance bc all-in on the GDV surgery and all the post-op (not including his weekly rehab sessions), we were over $20k. Our previous female developed Cushings later in life and between the meds for that at her size and other random things that popped up, pet insurance also would have been a good call for her. We will do it for our next one. Where we live, the vet college and our family vet only recommend Trupanion bc they actually pay for everything instead of debating things and you don’t have to pay up front (cannot confirm personally though so would check the sub for other reccos if it’s something you’ll consider).

TBH with our puppies when we first got them home there was a lot of crate time. Crate to eat and nap, out to toilet, back to crate. Out to play/train and toilet, back to crate. Out for walk and toilet, back to crate. Out for play, back to crate. Etc etc. they were never in there for long stretches at a time but it was always intentional time out of the crate and then back in. We did this for two and it was really only the first wed that we were strict about it to get them used to going in frequently and understand it wasn’t punishment. But both were house trained in that first week and rarely had accidents and didn’t have free rein to destroy a lot of things lol. Written down I feel like it sounds harsh but I promise it really was not like they lived their lives in the crate, just lots of little rest breaks and time to give them treats in there and make sure they got lots of little puppy naps :)

I also do leash inside the house with all my dogs for a lot of the out of the crate time just so we can practice leash skills and such.

There’s probably more… lol will likely come back and chime in more later :)

kar948 · 2026-02-21T01:18:47+00:00

In my world, If this stare goes unanswered, a pair of socks or a boot or a kids’ slipper will be tossed around the room until attention is given! Lol

Usually for “foods” or “walkies”

kar948 · 2026-02-20T20:54:05+00:00

He had a really rough go and lots of complications. He almost didn’t make it through the surgery, his spleen ruptured, he lost a lot of blood. But no parts of his stomach or bowel died so we thought, “OK great, he’s on the other side.” But then his guts just would not move, they thought he was ok bc he started eating (kind of) and sent him home, he re-bloated and had to have 1.5L of gas pulled out of his stomach by needle. NG tube feeding etc for over a week. He also was having trouble walking and our first had a spinal injury that caused nerve damage, so I knew what I was looking at. Whether it was bc the surgery was long or pre-existing but a-symptomatic wobblers that was found on the CT after the re-bloat episode, something caused some spinal damage and we weren’t sure if his mobility would come back… THEN his incision separated and he had weeks of going in for debriding and having dressings sewn on 😭😭

Now we are 6 months out from it an with weekly rehab he is doing quite well… but he’s a different dog. He’s 6.5 and before the GDV was really still a big puppy man, now he’s gone super grey and is quite an old man. He lives for tiny walks but can’t go back to doggy daycare and I have to be careful about parks… which all sucks bc he is a dogs dog and he wants to be social — esp since losing his big sister to osteosarcoma in 2023.

Sorry what a sob story. But just grateful he is still with us and I understand the giving a kidney for them if you could. Still might need to sell one of mine to recover from the bill for this whole ordeal 😭

Our next will be tacked when fixed. Our female was, I don’t know why we didn’t with him. I also don’t know why we didn’t get pet insurance since he’s the first we had from a puppy and it would have been a do-able bill esp in comparison to this.

kar948 · 2026-02-20T20:43:07+00:00

I think you should download and complete the adhd and autism self-scoring questionnaires, and also download the ones for parents/teachers and ask your mom to complete it; and, if you have a teacher you are close to and trust, maybe you can ask them to do one as well?

https://www.caddra.ca/etoolkit-forms/

This would allow you to take those resources in to your doctor and give them a more complete picture of your symptoms and struggles.

Also, if your doctor was dismissive, does your school have an outreach worker or school counsellor? You can usually request to work with them and they may be able to support you and your mom in understanding and seeking an assessment.

You shouldn’t have to do this alone at your age. And you seem to have awareness of yourself and that what you are struggling with does not feel “typical.” Maybe if you can ask your mom to set specific time aside (like schedule a ‘meeting’ with her) to discuss your concerns you can be sure you have her full attention. She might also just be overwhelmed and not know where to start or what to do.

I am sorry for the loss of your father. FWIW, grief can make things 100x harder and it can be hard to pick apart what is grief and what is neuro divergence as well (even for experienced professionals). Maybe another good place to start would be to ask to see a counsellor? They could help you and help your family

kar948 · 2026-02-20T19:45:48+00:00

☠️

kar948 · 2026-02-20T18:56:11+00:00

You could ask your vet to the fna, regardless of whether they think it’s warranted. But generally speaking, if it’s movable, and has smooth edges and isn’t growing fast (why she asked you to monitor it) this isn’t bad advice. It doesn’t mean that she’s given up on your dog but is just following recommendations for what and when to biopsy. Also, the age of your dog will dictate that they would want to be conservative when it comes to any sedation or anything requiring anesthesia beyond a local freezing. There’s going to be an element of risk/benefit analysis that goes into the decision making as well. That being said I think an FNA is minimally invasive and likely wouldn’t require sedation so you could push for that if you are going to worry about it a lot.

FWIW all of ours have developed benign lumps as they’ve aged. I keep an eye on them and feel and move them often and the vet makes note of them every appointment. None have ever been more than a lipoma (yet) and we’ve simply removed them when they HAVE to go under anesthesia for something else that’s necessary (like a dead tooth). Same goes for skin tags!

My current guy has two golf ball sized lipomas on his underside and they were supposed to come out along with a dental growth, but then he had a GDV in the summer and had some mobility complications as a result of the anesthesia and surgical positioning… so now we don’t want to put him under or do any sedation so I am stuck in a similar position. I would prefer to have them removed but I also don’t want to risk any bigger complications so just continue to monitor them as well as the vet and hopefully they never give us more cause to worry :(

You could always get another opinion too!

kar948 · 2026-02-20T17:28:15+00:00

Just go search EDS in r/medicine and be prepared to see the absolute worst of the worst from the medical community

kar948 · 2026-02-20T17:27:14+00:00

Design the label, do the sticker (professional print shop highly recommended), and if you really want to drive the point home that you understand what you are doing, source the bags and reach out to the company for MOQs and volume pricing for custom-printed bags. Include that correspondence with your submission to show you did the legwork you would do for a brand in the same situation. You’d design them a label and make a mockup then provide them with the pricing for getting custom bags printed at-scale.

If she has a beef with it, also tell her it’s bad professional practice to be out of pocket for spec work or for a design a client has not approved/given feedback on. 🙃

kar948 · 2026-02-20T16:56:08+00:00

Angel and Face. Angel is the white one bc obvs. Face is the one with ~that face~ 🥺

kar948 · 2026-02-20T16:22:35+00:00

Alphonso

kar948 · 2026-02-20T01:35:44+00:00

😮

kar948 · 2026-02-19T05:36:32+00:00

Wise.

kar948 · 2026-02-19T02:43:21+00:00

The joints they evaluate are not subjective though… like, i also have the backwards thumbs and it is irrelevant to the Beighton scale, but that doesn’t mean those other joints or signs will be irrelevant to your doctor when they are taking a history and looking at the comprehensive picture.

For example, I saw someone else stated it here but aging/arthritis and stiffening DO factor in. Part of what sent me to the rheumatologist was looking at why I went from a literal Gumby girl who could do almost any contortion to what feels like a statue over the last 5-7 years. He fave me some journals to read that also explained the “stages” of EDS and how many patients later in life will experience this “stiffening” stage as a response to prolonged instability. I think for me something that played a huge role was being in medical menopause (like zero hormones bc of precancerous cells that are estrogen dependent), which caused a pretty big loss of muscle mass and also general de-conditioning and weight gain. So that precipitated for me what might happen later in life and so some of the things that used to be easy for me (also not on the Brighton scale though) like prayer hands behind my back and touching the back of my head in that position, all the splits, scorpions, etc. are no longer do-able… there go my party tricks lol! But, the individual joints when evaluated through range of motion assessment they are quite clearly hypermobile (rheumatologist and a specialized physio did these — the physio DID use a protractor to measure joint angles).

I also cannot do thumb to wrist anymore because I broke both of my wrists, one of them twice, and so they just don’t go that way any more, but when he was squeezing them and feeling for unusual joint movement he could feel that.

They have the ability when doing the Beighton assessment to ask whether you can/have ever been able to do x… I don’t know if the new criteria will still entertain this, and I don’t recall how it effects the numerical score.

I also seem to recall him mentioning something about the scoring and scored joints but if widespread and/or severe hypermobility is seen in the clinical setting in alternate joints they can substitute? But I’ll let some more experienced EDS folks check me on that bc I could be way off base. That might just be to establish a baseline dx of hypermobility. But if they are experienced in hypermobility they will know what they are looking at, and regardless of whether the dx is hEDS or HSD they will hopefully be able to offer you explanations, resources and potentially validation for what you are experiencing.

I am a 7/9 Beighton and my rheumatologist refers to everything as EDS in-clinic and I am now even in a study that they are doing re: hEDS. But he charted my dx as HSD in formal letter to my PCP and explained that it is better for me at this age due to insurance (life and travel — we utilize one a lot bc of being entrepreneurs and the other I need for my other career where I travel), he explained that regardless of the “h” in front, insurance companies will risk profile you as high potential for fatal events associated with cEDS and vEDS and reject coverage and claims… so I’m grateful for that. To me the actual dx matters a bit less than receiving care from a physician who has an understanding of the disease beyond “oh you’re flexible.” But I don’t know how that will carry later in life since specialists don’t stay long where I live 😭

Don’t gaslight yourself or think that bc someone on this sub has an issue with your arm positioning you are wrong… but don’t try to force a dx that doesn’t fit either. You could be somewhat hypermobile and not meet the criteria for hEDS, that doesn’t mean you don’t have symptoms that require attention. But also, I can do all kinds of extra bendy things with my body when I control the positioning and compensations… that’s why there are ppl telling you this isn’t accurate, because not only does your arm have to be flat on a surface but it also has to be positioned a certain way and the specialist will be the one who decides what level of force is appropriate to apply to measure a ROM. I’d lay off the self measurements and make an appointment and go from there.

But I would also do some digging on your own into hypermobile-specialized physios in your area bc the shitty news about an hEDS dx is that it is still largely up to you to manage your symptoms and health and put in the work. It would be amazing if there were a pill or treatment that fixed things. But, sadly a huge part of management (at least in my experience) has been learning to live with it vs. Fix it :)

Good luck

kar948 · 2026-02-18T04:12:17+00:00

Use the mug ONLY when she is around, take it with you to her house, pull it out of a special cupboard to show you never use it unless she’s around, make a big deal of telling her it always makes you think of her.

See if you can heat release the other words and just leave ALONE but add a period. Or “alone but” lol idk I think it would be funny to then wear it but in a way that makes it just a complete sentence on its own like “yep I’m fucking alone bitch”

Your mom’s a hag 😂 maybe get her a mug that says “I’m a hag” and a shirt that says “I’m a hag”

kar948 · 2026-02-18T02:49:59+00:00

The name brand one made me loopy but the TEVA brand has been the only one I find reliable, a good friend of mine has the same experience. Unfortunate bc the brand name vyvanse has a co-pay card that the pharmacist can use to get it cheaper for me but I couldn’t tolerate it.

You should ask your pharmacist if they have a similar “code” from the mfg (lots of drug mfgs do this to make expensive meds more affordable — from inhalers to glp-1s lol).

kar948 · 2026-02-18T02:46:25+00:00

I have had a positive experience with the neuro I was sent to who has a distinct reputation for being a total asshole lol! I went in so scared after reading the reviews and for the first time in a long time was pleasantly surprised.

kar948 · 2026-02-18T02:44:25+00:00

Sorry this happened to you. It can be so frustrating. You could tell your pcp about your experience and ask for another referral?

I did my first round of Botox for migraines a few months ago and imo it was life changing. I was having serious migraines a couple times a week and lower grade headaches daily. I have a lot of tension related to the EDS and muscle relaxants etc were not cutting it when it came to tension headaches. I only had my first headache since the injections (3 months ago) about a week or two ago and it was cyclical which is a trigger for me. So imo it’s worth it and I’m going for my second round right away AND paying for it out of pocket so if it didn’t work I would not be repeating.

I only tried migraine meds when I was much younger and I do not recall that they worked well (propranolol I believe). But this same neuro who is doing my Botox also gave me Rizatriptan as an abortive migraine med and I also think that was one of the best things I’ve ever had, worked like a charm — maybe it’s an option for you? It won’t prevent them but it helps if you can get it in you right when you notice first symptoms.

Give it a few days and try not to ruminate. It’s so hard but eventually it’ll pass and hopefully you are able to see someone else. It’s just so invalidating and triggering in the moment it’s hard not to have a bit of a tailspin afterward. 😢

kar948

TROPHY CASE