sure your hip goes in and it sounds like a small thud. mine goes in and it sounds like im shattering every bone in my leg and hip and alerts the whole house 😂
For school we have to do a research project, so of course i am researching EDS (even though i know a lot about it) and going to present it in front of my class. (1 like= good luck)
I love watching your videos because I can relate to a lot of them. I also appreciate you taking the time to create them because even though its fun it is very time consuming!
Thank you for sharing. Your channel is so inspiring. I’m currently going through the process of being officially diagnosed with EDS. Seeing a genetic specialist tomorrow. I have numerous joints that are/have been dislocated for years, but within the last 2 years my jaw has become displaced. I haven’t been able to really speak or chew for 18 months. At this point, I haven’t closed my mouth, teeth to teeth, for over 6 months. It is quite literally maddening. It makes me claustrophobic in my own skin, because there is no escaping the pain and discomfort. Every drink of water, gulp of blended food, is accompanied by an awful shift in my jaw to a position that I sometimes cannot retrieve it from. Ugh.... I have good days and bad days... they don’t know what to do with me. Maxillofacial surgeons are awaiting diagnosis before determining if I can even successfully undergo jaw surgery. I still force myself to sing through the pain (with slight speech impediments), as music is the great joy of my life... anyway, thanks for sharing. I love your attitude and tenacity. You’re a bad ass. Peace.
Dang girl I heard that hip and it did not sound right. 😫 I'm not diagnosed in any way but I feel my joints "get stuck" a lot and it is PAINFUL. Sometimes I go to extend my arm and physically can't. The pain can take my breath away. Oof.
I have a similar problem. My elbows and knees do it most. I usually have to force them to move and they pop, then I can move fine. I also have problems with my ribs slipping out of place alot.
@@IronBlitz Usually I bend the joint back in and then when I re-extend it its fine. But occasionally it will just snap. I'm assuming its the joint rolling or subluxing a little bit. Thats what it feels like.
My jaw and hips also subux. My shoulders do it the most though, and I hate having my shoulder out the worst. It messes up my entire back when it's out, hurts so bad.
I struggle a lot with joint dislocations I have Eds too! My shoulders are very bad my left one is the worst and since I’m too young to have surgery on it I have to just hold out till I’m about 14-15 (I’m 13,f) but now my shoulders dislocate so bad I can barely even use my left. But I completely understand the pain us bendy folks have to deal with its definitely not fun! But we are strong and will get through it. Mickey you inspire me so much to be so much more stronger and a better person I feel like I can accomplish anything watching your vids!!!!
I love your hair pulled back. That's how I have my hair 95.7% of the time, but mine is a bit longer and shaved on the sides and back. It's so nice when it's hot and I'm exhausted, but nice to have some hair when I feel like doing something with it. Keep on being you, even if you're tired. I'm with you with the tired. Sending spoons!
Could you upload a video on how you put the KT tape on your thumb/hand? I'd love to see that, I just bought tape but am unsure of how to apply it so it'll help my EDS joints!!
Hi, not Mickey here but it's different for everyone! A PT should check out which direction you're having movement so it can be corrected. Ideally the tape should pull in the opposite direction of the excessive joint movement, and it should activate a muscle in the process, and put the "weight" of the pull into that muscle. It's confusing and definitely too hard to wing on your own, unless you want to do your research and read up on kt methods for different types of movement, after figuring out which direction yours is in. Good luck!
Great video! Sounds like a typical morning for me too! I think hips are the most painful for me to pop back in! I appreciate you sharing with people our reality as Zebras! Much love from a fellow CEDS! #ZebraStrong
Oh man watching you try do your hips made me squeal. I feel your pain so much there. For me the process of pushing them in hurts so bad but once they pop in it feels so good. Very cool of you to show this on camera, that is not an easy thing to do!
"This girl is... TIRED, She's not walking she's TIRED!" Yes I just made a spoof of "This girl is on fire" just for you :p great vid! Sorry about the pain! Have a good weekend though!
Yes I know it really painful when relocated the join. For 3 years ago, I had been falling down in my backyard and my elbow bone just out of place, I thought it was be broken, but when I twisted it, it was back on it’s place. After that fall, It comes back frequent, and I have to be careful with it. I also use crutches, and have braces to support my Polio 🦵 .
How do you know you are putting the joints back in? In this video it just seemed like she was popping things. I have hEDS and definitely pop shit, even as loud as she did, but I didn't know I was putting things back in.
Not all people with EDS have to put all joints in. I only have to do my spine & shoulders. Spine takes about 30m and a ton of energy; sometimes I just leave 1/2 of it sublaxed. Hips are great; they've only gone out 2x in my life. She's also burdened with tubes that I'm not. Strong gal.
she's lucky her's go in that easily. sometimes it takes me an hour or more to get certain joints back in, especially the hips, ribs. sometimes they go in wrong, and damage to nerves and veins can happen which can be dangerous (specifically the hip is bad apparently), I was told by my GP and at the ED last time. not all joints fully dislocate, the less damaged and less far gone joints just sublux, 100's of times a day, along with the usual EDS snap crackle and pop noises we make XD. My hips have suddenly gotten worse recently, and are dislocating doing nothing, sitting on a chair, or standing and moving a bit. Another doctor I'll have to add to the list. It takes a long time to get used to, with a recent diagnosis.
@@nos676 Can I avoid that somehow (hips getting worse)? My shoulders are already so bad... soon they will be fully dislocating. I bet within a few years. I'm doing isometrics for that, and my hips. But if my hips go too I am going to lose a huge amount of mobility. My shoulders already have me teetering on the edge of legally disabled. They are permanently lax and it's hard to do anything without injuring them. When they are injured, I am in so much pain I want to be knocked out. I barely get by with medical.
I’m just slightly early but ilyyy I have hms and find it rlly interesting how people get there joints back in as I have to do my hips and shoulders a lot 🥰
I have EDS and often have to relocate joints in the morning, or wake to do them through the night. I’m just a little confused as to how you can move your “dislocated” joints, or did you mean subluxed but it’s easier to say dislocated as there is more awareness on what a dislocation is? To me it just looked like you were cracking your joints instead of actually reducing them. I’m so sorry if this is coming across as rude, that’s not my intention at all. My apologies if they are actually dislocated, I guess I’m amazed how my dislocations differ to yours if that’s the case. Take as much care as possible!
That's how mine are too. If it's dislocated I can't do anything with that joint till I fix it. If its subluxed, or as I call it "slightly slid out" it will be uncomfortable but I can still move the body part. So I was wondering the same thing when I watched her.
Brandy, I’m glad I’m not the only other person with EDS that was confused by this. To me, it simply looked like she was cracking her joints instead of reducing them.
@@tammyearrye1172 why is it called reducing? I think my husband & I gave our kids EDS, & puberty seems to make it worse. I certainly hope they don't get worse. Mine didn't show itself until about 47, except for a couple of things that I didn't know had anything to do with EDS, until I was older, & started researching why 3 people in my family have Chronic Acid Reflux. Then I found EDS, & I think most of my questions are finally answered after 3 years of studying everything I could think of about EDS. However I still don't understand how to help my family get rid of the Chronic Acid Reflux.
My hips are my favourite to relocate just because of how satisfying the sounds are and because they are the most painful when out. Fingers are my least favourite 😭
I loved the part of your hair in the tiny bun! Made me laugh:) also yay!! I started singing the needle song in my head and then you said it and I was like woop woop!! Got that frey life on my mind. Anyway. I hope you are soing well today!
You are such a cute person and pleasant human being. It's so interesting watching you fix your joints. Looks intensely painful though. Is there not something you can use to prevent the joints from slipping out?
Not sleep 😂 we dont realize how we move when we're sleeping so it's harder to control the dislocations. I mean you could potentially brace up all your joints but it would be extremely uncomfortable to sleep or potentially dangerous if you restrict blood flow. So the short answer is no.
About getting new furniture (somehow I get the feeling I'm the only one who didn't know this)... you DO wanna wipe clean all the parts before assembling and bringing them into your room. I just got some IKEA bookshelves and a trolley and OMG they still smell of sawdust+paint and what not!
I really wish you didn’t have to go through this everyday. You deserve to live life without pain and having to worry. I don’t have EDS, but I’m double jointed, have joint pain, and joints that crack and pop a lot (especially in the morning, such as extending my arm when I wake up). I also feel tired most of the time too. I don’t have it nearly as bad as you, but I do understand some of the things you go through. Stay strong. 💜
Dark chocolate can help stomach pain lavender and chamomile tea can help stomach pain too heat pad can help stomach pain orange peels ginger and cinnamon you put in a jar put olive oil in it and let the jar sit in a dark place for 2-6 weeks and shake once a while when it's done during the oil out and throw away the stuff except the oil you can put the oil inside your drinks and it would help your digesting work right 🙂
I have EDS and have 12 ear piercings. Lobes didn't take long to heal at all but I stretched my ears before I knew I had EDS and tore my first holes so they never fully went back to normal but I can wear normal earrings still. The cartilage piercings were a BITCH to heal. Took a fully year for each one. Hypertrophic scarring was an issue with all of them
Are you on Scopolamine for nausea? I noticed the patch on your neck. Does it help you? It didn't work at all for me and I had pretty bad withdrawal symptoms coming off of it. And I was only on it for a few months. I had to use Bonine (Meclizine) to help me come off the Scopolamine.
It can be very painful just incredibly uncomfortable. For me personally I subluxate more than actually dislocate so it's more of extreme discomfort in some areas. Like when my wrist is out or my ribs it's a lot of discomfort. It's more painful in when my hips come out or my kneecaps.
I always thought dislocations were visible but they weren't in your elbows. How dou you know if it is gas or a dislocation? Is it in the pain or doesn't every relocation hurt?
"I ain't got no needle in my chest" .... lol I LOVE The Frey Life! I don't have a port but as a chronic pain warrior, I definitely say "I'm awake, I'm alive and my head doesn't even hurt" whenever I am, even momentarily, without a headache.
My knees, hips and elbows dislocate alot but im not sure how to properly put them back in. sometimes they fall back in if i shift around how im sitting/laying.
My son is starting to get subluxations but we don't know for sure what it looks like. How would we know if something is subluxed? He currently has elbow pain. We (me as his mom, him, and the rest of my kids as we all have some level of hypermobility) are new to the diagnosis and don't know what to look for. He says it feels like his arm is weak and going to fall off.
A sublaxion just feels like the joint isnt sitting right in the socket. Painful and uncomfortable. If you can pop it in, you get a crack and instant comfort.
All the things you do just to be able to move, that in itself would be exhausting. Odd question for you, do you eat because some of it does digest or do you eat just for the flavor? I know that is unusual to ask but I do know some people with gastroparesis can digest some things, but others eat just for the taste. Rest and take care of yourself.
Life with Stripes I am curious on if you will ever be able to eat again? I am so sorry you have those issues. I didn’t start getting those types of issues until recently at 26. I am actually scared to get any worse. Your videos are helping me for what’s to come. I appreciate you! I have vEDS/Classical alongside of that as well.
literally what my mornings look like :') My hips SUCK!!!! To put back in :( My right hip is the hardest and never fully goes back in but my left is farely easy thankfully. but gosh it sucks. same with elbows.
This is probably a really weird question but what to you do to keep your hair cleaner for longer I get my mum to wash my hair too but it always just gets gross so fast
I used to have to wash my hair every day or two but I would force myself to go an extra day every time it got dirty and eventually (about 6 months) I could go 4 or 5 days without washing and decided to stop there. Who knows how long I could have pushed it ;) don't know if that helps but I hope it does.
Has there been any research done on medical marijuana for eds??? I know medical marijuana has great results for easing people's pain. It's great for nausea and it helps for peoples sleep. I'm sure you've heard these questions before but I'm just curious??? Hope you're doing good have a good day.
Paintbrush ponytail!!! I think that's what your man bum is!!! I would LOVE to have my hair like yours but mine is far too thick and it would be to poofy and frizzy.
In not sure where your based out of but I'm participating in a EDS walk in Arlington, Texas on may 11th. If your interested go to www.dfwedsawarness.com to register
i don’t know how it is for mickey but i have hEDS and some joints can be quite painful putting back in place but the ones that come out most often for me don’t really hurt since i’m so used to it. i think it varies from person to person though
KT Tape is great, but if you get to a point that you are driving often, and don't want tape constantly on your hands/skin, and taking it off (which sucks, I know!). ACE brand braces sells a thumb splint with removable plastic bars, and it's in a similar shape as you have the tape. It wraps around the wrist with a velcro strap, and another smaller one around the thumb just below the smallest knuckle (on my hand at least). I got mine from a store, but here's the same one on Amazon: amzn.to/2LIqjft
Note to self: resume watching at 1:56. 3:01 What was that? 3:49 No, really??? ;-) By the way, what was that on your screen? 4:25 I wasn't going to. 4:52 Even if something is easy, it can still take a lot of time. 6:11 I've watched it. I wish we could have watched the sim. 6:37 That sounded more like a sneeze to me. 8:18 Then that girl needs to hit the feathers, just like I'm only minutes away from doing. 8:33 Funny accent. 8:39 I remember hearing her say that.
![Quando Rondo - Life Goes On [Official Music Video]](http://i.ytimg.com/vi/eIf3fhMXAow/mqdefault.jpg)
This is one of the most realistic videos of what my life looks like. Thank you so much for sharing.
sure your hip goes in and it sounds like a small thud. mine goes in and it sounds like im shattering every bone in my leg and hip and alerts the whole house 😂
I’m an jealous how easily your elbows went back in. I’m still learning how to relocate my joins and elbows and knees are so hard for me!
For school we have to do a research project, so of course i am researching EDS (even though i know a lot about it) and going to present it in front of my class. (1 like= good luck)
You are too cool for school warrior
I did that too! I KILLED the project. 😁
Best of luck to you!!! Good for you, awareness and education is sooooooo important
I love watching your videos because I can relate to a lot of them. I also appreciate you taking the time to create them because even though its fun it is very time consuming!
Thank you for sharing. Your channel is so inspiring. I’m currently going through the process of being officially diagnosed with EDS. Seeing a genetic specialist tomorrow. I have numerous joints that are/have been dislocated for years, but within the last 2 years my jaw has become displaced. I haven’t been able to really speak or chew for 18 months. At this point, I haven’t closed my mouth, teeth to teeth, for over 6 months. It is quite literally maddening. It makes me claustrophobic in my own skin, because there is no escaping the pain and discomfort. Every drink of water, gulp of blended
food, is accompanied by an awful shift in my jaw to a position that I sometimes cannot retrieve it from. Ugh.... I have good days and bad days... they don’t know what to do with me. Maxillofacial surgeons are awaiting diagnosis before determining if I can even successfully undergo jaw surgery. I still force myself to sing through the pain (with slight speech impediments), as music is the great joy of my life... anyway, thanks for sharing. I love your attitude and tenacity. You’re a bad ass. Peace.
Dang girl I heard that hip and it did not sound right. 😫 I'm not diagnosed in any way but I feel my joints "get stuck" a lot and it is PAINFUL. Sometimes I go to extend my arm and physically can't. The pain can take my breath away. Oof.
I have a similar problem. My elbows and knees do it most. I usually have to force them to move and they pop, then I can move fine. I also have problems with my ribs slipping out of place alot.
@@IronBlitz Usually I bend the joint back in and then when I re-extend it its fine. But occasionally it will just snap. I'm assuming its the joint rolling or subluxing a little bit. Thats what it feels like.
My jaw dislocates multiple times a day, which is fun. Recently my hips have start to sublux more and more so fun.
My jaw and hips also subux. My shoulders do it the most though, and I hate having my shoulder out the worst. It messes up my entire back when it's out, hurts so bad.
I struggle a lot with joint dislocations I have Eds too! My shoulders are very bad my left one is the worst and since I’m too young to have surgery on it I have to just hold out till I’m about 14-15 (I’m 13,f) but now my shoulders dislocate so bad I can barely even use my left. But I completely understand the pain us bendy folks have to deal with its definitely not fun! But we are strong and will get through it. Mickey you inspire me so much to be so much more stronger and a better person I feel like I can accomplish anything watching your vids!!!!
thx, as a double amp, you help me keep going i love you explaining your world and maisey
I've been trying to figure out how to put my elbows back into place better and I just used your way and it worked so well thanks
I love your vlogs!!!! I hope that today has been treating you well
I love your hair pulled back. That's how I have my hair 95.7% of the time, but mine is a bit longer and shaved on the sides and back. It's so nice when it's hot and I'm exhausted, but nice to have some hair when I feel like doing something with it. Keep on being you, even if you're tired. I'm with you with the tired. Sending spoons!
Could you upload a video on how you put the KT tape on your thumb/hand? I'd love to see that, I just bought tape but am unsure of how to apply it so it'll help my EDS joints!!
Hi, not Mickey here but it's different for everyone! A PT should check out which direction you're having movement so it can be corrected. Ideally the tape should pull in the opposite direction of the excessive joint movement, and it should activate a muscle in the process, and put the "weight" of the pull into that muscle. It's confusing and definitely too hard to wing on your own, unless you want to do your research and read up on kt methods for different types of movement, after figuring out which direction yours is in. Good luck!
Great video! Sounds like a typical morning for me too! I think hips are the most painful for me to pop back in! I appreciate you sharing with people our reality as Zebras! Much love from a fellow CEDS! #ZebraStrong
Oh man watching you try do your hips made me squeal. I feel your pain so much there. For me the process of pushing them in hurts so bad but once they pop in it feels so good. Very cool of you to show this on camera, that is not an easy thing to do!
"This girl is... TIRED, She's not walking she's TIRED!" Yes I just made a spoof of "This girl is on fire" just for you :p great vid! Sorry about the pain! Have a good weekend though!
I feel ya. Lately I crack more than I used to but I am still staying active daily!
Yes I know it really painful when relocated the join. For 3 years ago, I had been falling down in my backyard and my elbow bone just out of place, I thought it was be broken, but when I twisted it, it was back on it’s place. After that fall, It comes back frequent, and I have to be careful with it. I also use crutches, and have braces to support my Polio 🦵 .
To wake up everyday putting joints back, thats crazy
It is. But not everyone with EDS has to do it.
How do you know you are putting the joints back in? In this video it just seemed like she was popping things. I have hEDS and definitely pop shit, even as loud as she did, but I didn't know I was putting things back in.
Not all people with EDS have to put all joints in. I only have to do my spine & shoulders. Spine takes about 30m and a ton of energy; sometimes I just leave 1/2 of it sublaxed. Hips are great; they've only gone out 2x in my life. She's also burdened with tubes that I'm not. Strong gal.
she's lucky her's go in that easily. sometimes it takes me an hour or more to get certain joints back in, especially the hips, ribs.
sometimes they go in wrong, and damage to nerves and veins can happen which can be dangerous (specifically the hip is bad apparently), I was told by my GP and at the ED last time. not all joints fully dislocate, the less damaged and less far gone joints just sublux, 100's of times a day, along with the usual EDS snap crackle and pop noises we make XD. My hips have suddenly gotten worse recently, and are dislocating doing nothing, sitting on a chair, or standing and moving a bit. Another doctor I'll have to add to the list. It takes a long time to get used to, with a recent diagnosis.
@@nos676 Can I avoid that somehow (hips getting worse)? My shoulders are already so bad... soon they will be fully dislocating. I bet within a few years. I'm doing isometrics for that, and my hips. But if my hips go too I am going to lose a huge amount of mobility. My shoulders already have me teetering on the edge of legally disabled. They are permanently lax and it's hard to do anything without injuring them. When they are injured, I am in so much pain I want to be knocked out. I barely get by with medical.
Sorry you have to go through that in the morning, the pops were lowkey satisfying to hear but its still sad. Wish you the best
Making progress on your room. Good project to do! I’m sure it will make you feel better too.
I’m just slightly early but ilyyy I have hms and find it rlly interesting how people get there joints back in as I have to do my hips and shoulders a lot 🥰
I have EDS and often have to relocate joints in the morning, or wake to do them through the night.
I’m just a little confused as to how you can move your “dislocated” joints, or did you mean subluxed but it’s easier to say dislocated as there is more awareness on what a dislocation is? To me it just looked like you were cracking your joints instead of actually reducing them.
I’m so sorry if this is coming across as rude, that’s not my intention at all. My apologies if they are actually dislocated, I guess I’m amazed how my dislocations differ to yours if that’s the case.
Take as much care as possible!
That's how mine are too. If it's dislocated I can't do anything with that joint till I fix it. If its subluxed, or as I call it "slightly slid out" it will be uncomfortable but I can still move the body part. So I was wondering the same thing when I watched her.
Brandy, I’m glad I’m not the only other person with EDS that was confused by this. To me, it simply looked like she was cracking her joints instead of reducing them.
@@tammyearrye1172 why is it called reducing? I think my husband & I gave our kids EDS, & puberty seems to make it worse. I certainly hope they don't get worse. Mine didn't show itself until about 47, except for a couple of things that I didn't know had anything to do with EDS, until I was older, & started researching why 3 people in my family have Chronic Acid Reflux. Then I found EDS, & I think most of my questions are finally answered after 3 years of studying everything I could think of about EDS. However I still don't understand how to help my family get rid of the Chronic Acid Reflux.
My hips are my favourite to relocate just because of how satisfying the sounds are and because they are the most painful when out. Fingers are my least favourite 😭
I loved the part of your hair in the tiny bun! Made me laugh:) also yay!! I started singing the needle song in my head and then you said it and I was like woop woop!! Got that frey life on my mind. Anyway. I hope you are soing well today!
Omg same ahahah
I'm not nearly "as sick as you" and I totally get that I'm so tired all I can think of to say is I'm tired thing
will you make a video about the books you like? i personally love reading and am always excited to see people talk about books
i feel you girl, getting up and just popping and cracking is the worst 😫
It’s so nice to see you every day, Mickey xxxxxxxxxxxxxx
I have life with stripes as well. Watching your videos truly help me feel less alone 🦓
You are such a cute person and pleasant human being. It's so interesting watching you fix your joints. Looks intensely painful though. Is there not something you can use to prevent the joints from slipping out?
Not sleep 😂 we dont realize how we move when we're sleeping so it's harder to control the dislocations. I mean you could potentially brace up all your joints but it would be extremely uncomfortable to sleep or potentially dangerous if you restrict blood flow. So the short answer is no.
About getting new furniture (somehow I get the feeling I'm the only one who didn't know this)... you DO wanna wipe clean all the parts before assembling and bringing them into your room. I just got some IKEA bookshelves and a trolley and OMG they still smell of sawdust+paint and what not!
🤧
I really wish you didn’t have to go through this everyday. You deserve to live life without pain and having to worry. I don’t have EDS, but I’m double jointed, have joint pain, and joints that crack and pop a lot (especially in the morning, such as extending my arm when I wake up). I also feel tired most of the time too. I don’t have it nearly as bad as you, but I do understand some of the things you go through. Stay strong. 💜
Dark chocolate can help stomach pain lavender and chamomile tea can help stomach pain too heat pad can help stomach pain orange peels ginger and cinnamon you put in a jar put olive oil in it and let the jar sit in a dark place for 2-6 weeks and shake once a while when it's done during the oil out and throw away the stuff except the oil you can put the oil inside your drinks and it would help your digesting work right 🙂
By chance did you get the Gardasil vaccine?
What do you do if your joint doesn’t go in right? Does your mum have to help you or are you able to resolve it yourself?
I’ve always had hyper mobile joints especially the hips and fingers. Never been a big problem. My hips will get achy if they pop in and out too much
I've never dislocated any of my joints but they sound exactly like this when they pop. They pop all of the time especially my hips, knees, and ankles
Yikes! I have EDS too and this still makes me want to look away poor you :((
Just wondering. Since you have EDS, how was the healing process with getting your ears double pierced?
I have EDS and have 12 ear piercings. Lobes didn't take long to heal at all but I stretched my ears before I knew I had EDS and tore my first holes so they never fully went back to normal but I can wear normal earrings still. The cartilage piercings were a BITCH to heal. Took a fully year for each one. Hypertrophic scarring was an issue with all of them
New to your channel when you said I ain’t got no needle in my chest .. I was like wait! I know that ... lol I luv Mary Frey
Are you on Scopolamine for nausea? I noticed the patch on your neck. Does it help you? It didn't work at all for me and I had pretty bad withdrawal symptoms coming off of it. And I was only on it for a few months. I had to use Bonine (Meclizine) to help me come off the Scopolamine.
Are they painful if you don’t put them back in
They are painful when they come out, painful when they are out, and painful when the go back in. The whole process hurts, unfortunately ☹️
Awe I’m sorry that sucks
It can be very painful just incredibly uncomfortable. For me personally I subluxate more than actually dislocate so it's more of extreme discomfort in some areas. Like when my wrist is out or my ribs it's a lot of discomfort. It's more painful in when my hips come out or my kneecaps.
I have a question is zebra your spirit animal?
I always thought dislocations were visible but they weren't in your elbows. How dou you know if it is gas or a dislocation? Is it in the pain or doesn't every relocation hurt?
You feel it, like you feel that your Bones arent in the right place totally, and often it hurts yeah
@@wikolya okay so I can have luxations when I have to pop something eventhough nothing wrong is visible?
"I ain't got no needle in my chest" .... lol I LOVE The Frey Life! I don't have a port but as a chronic pain warrior, I definitely say "I'm awake, I'm alive and my head doesn't even hurt" whenever I am, even momentarily, without a headache.
My knees, hips and elbows dislocate alot but im not sure how to properly put them back in. sometimes they fall back in if i shift around how im sitting/laying.
Does anyone know if a parent can get an extension for their child to stay on Medicaid when having such debilitating pain, & fatigue that EDS causes?
My son is starting to get subluxations but we don't know for sure what it looks like. How would we know if something is subluxed? He currently has elbow pain. We (me as his mom, him, and the rest of my kids as we all have some level of hypermobility) are new to the diagnosis and don't know what to look for. He says it feels like his arm is weak and going to fall off.
A sublaxion just feels like the joint isnt sitting right in the socket. Painful and uncomfortable. If you can pop it in, you get a crack and instant comfort.
All the things you do just to be able to move, that in itself would be exhausting. Odd question for you, do you eat because some of it does digest or do you eat just for the flavor? I know that is unusual to ask but I do know some people with gastroparesis can digest some things, but others eat just for the taste. Rest and take care of yourself.
Good question! I eat for the taste 😊 All of it drains out my stomach tube aka G-tube portion because I can't digest it
Thank you for your answer I was just curious.
Life with Stripes I am curious on if you will ever be able to eat again? I am so sorry you have those issues. I didn’t start getting those types of issues until recently at 26. I am actually scared to get any worse. Your videos are helping me for what’s to come. I appreciate you! I have vEDS/Classical alongside of that as well.
love your hair! :)
literally what my mornings look like :') My hips SUCK!!!! To put back in :( My right hip is the hardest and never fully goes back in but my left is farely easy thankfully. but gosh it sucks. same with elbows.
Yep.. my hip has been out for 6 weeks, can not get it back in at all. Tried everything.
Wow found this looking on how to fix my thumb
This is probably a really weird question but what to you do to keep your hair cleaner for longer I get my mum to wash my hair too but it always just gets gross so fast
I used to have to wash my hair every day or two but I would force myself to go an extra day every time it got dirty and eventually (about 6 months) I could go 4 or 5 days without washing and decided to stop there. Who knows how long I could have pushed it ;) don't know if that helps but I hope it does.
Dry shampoo!
How much does it hurt to do that to your joints?
Is painful when they dislocate?
Has there been any research done on medical marijuana for eds??? I know medical marijuana has great results for easing people's pain. It's great for nausea and it helps for peoples sleep. I'm sure you've heard these questions before but I'm just curious??? Hope you're doing good have a good day.
How old are you? You seem very mature
NO ONE BELIEVES ME,
NOT EVEN MY DOCTORS
Mines the worst sitting n sleeping
Paintbrush ponytail!!! I think that's what your man bum is!!! I would LOVE to have my hair like yours but mine is far too thick and it would be to poofy and frizzy.
Why are you packing ?
Hi!
i thought you were moving lol
Can you have a job like that?
What does she have??
hEDS
Didn't know Arya Stark had a youtube channel.
I love you so much 😍😍😍😍
In not sure where your based out of but I'm participating in a EDS walk in Arlington, Texas on may 11th. If your interested go to www.dfwedsawarness.com to register
I’m a zebra warrior too😊
You are the girl of my dreams I love you
Does it hurt all the time or is some easier than others?
i don’t know how it is for mickey but i have hEDS and some joints can be quite painful putting back in place but the ones that come out most often for me don’t really hurt since i’m so used to it. i think it varies from person to person though
KT Tape is great, but if you get to a point that you are driving often, and don't want tape constantly on your hands/skin, and taking it off (which sucks, I know!). ACE brand braces sells a thumb splint with removable plastic bars, and it's in a similar shape as you have the tape. It wraps around the wrist with a velcro strap, and another smaller one around the thumb just below the smallest knuckle (on my hand at least). I got mine from a store, but here's the same one on Amazon: amzn.to/2LIqjft
Both of my knees dislocate what do y’all think?
you are so cute
Note to self: resume watching at 1:56.
3:01 What was that?
3:49 No, really??? ;-)
By the way, what was that on your screen?
4:25 I wasn't going to.
4:52 Even if something is easy, it can still take a lot of time.
6:11 I've watched it. I wish we could have watched the sim.
6:37 That sounded more like a sneeze to me.
8:18 Then that girl needs to hit the feathers, just like I'm only minutes away from doing.
8:33 Funny accent.
8:39 I remember hearing her say that.
I have to do the same with my shoulders every morning and hips. It's so annoying lol