i cant imagine the things you have to go through physically and emotionally and im so glad you have such a positive outlook on things and that you spread your beautiful smile and awareness ab these things to everyone you can. its so hard to find a reason to smile sometimes, so thank you for making me smile :)
That style brace really helps with my shoulder too. I don’t follow the instructions, I just put it where I need it. Braces are better than surgery because surgery wears off but braces can be tightened up repeatedly!! Thanks for another video Mickey!!! Glad to see you again.
4:00 Anyone who has had major surgery would never suggest "just" having surgery.We know there is nothing "just" about major surgery, and we know there are tons of reasons not to have it. The rest can be ignored as ignorant.
I absolutely love how you smile through your pain and look amazing. I have Fibromyalgia and back and hip issues and I cannot change my pain face to a happy face. I wear it constantly. I applaud you for getting through all you go through.. it's a tough journey going through pain and still seeing the bright side of life... Keep smiling 🤗😘❤️❤️
I just lost my friend 3 years ago at age 24 to Eds so I couldn't bring myself to watch your videos without tearing up. It just reminded me of her too much looking at your totals and even the word EDS was too triggering for me. I am so glad that you are raising awareness for this disease. Keep doing what's your doing. This is the first video I was able to watch of you at this very moment just because it was too hard. I will try to watch more of your videos but forgive me if I cant watch all right away.
I wanted to take this moment to thank you for making this videos. I watched your “low profile” G tube video other day. The reason the video got into my feed was because I was looking for G tube procedures. I’m an IR technologist and we do this in our department. Thank you 🙏
I have exactly the same type of permanent dislocation as you, my shoulder brace has been a life saver. I wear an Orthoback Omo Neurexa Plus, it's the same idea as what you've got but a bit easier to get on.
Incredible lashes Mickey!!! My mum has had a reverse shoulder replacement which is a sealed socket around a ball where the ball is on the scapula and the socket is closed around the ball (and can't disengage or dislocate) and the socket is attached to the rod that goes into the cored out humerus. Mum needed it because her smashed joint 30years ago lost all the bone connective tissue and muscle at the back in a netball accident where she was pushed into the netball post which displaced the joint- so when the plastic replacement joint from 1978 fell apart, her anatomy could never stabilise a standard titanium replacement joint that resembles our anatomy exactlu. This titanium one now will last a lifetime. But it was designed for her in 2003... But at my hospital outside London now we see at least 2-3 of these joints used every three months or so which is an incredible advancement and could really help EDS patients (which is who we see them used for when it's their first replacement, but mainly it's used to replace old joints made in 70s/80s) My mum doesn't have any systemic problems, she went back to playing squash to specifically rehab that arm and now plays a lot of very competitive golf with zero issues from that shoulder and this socket type gives her 70-80% normal motion; not windmill rotation or vertical reach- neither of which she has ever had since her original injury at 18yrs old anyway. Keep researching, sweety, surgery may not all be as scary and risky as you think- it may be how you eliminate your shoulder as a dominating problem area! As you say- you've got bigger shiz to deal with like ensuring you do not starve!! Keep balancing those *benefits* against risks+ inconveniences. I love you xxxxxx
I’m happy you found something that helped. I just wish most bracing options didn’t make me think that I will have more trouble with heat and sweat in the Florida weather
I had surgery on my left shoulder the beginning of this year to stop it dislocating. My orthopaedic surgeon has done a different procedure because of my EDS and so far best decision ever. No dislocation since January
I had my right shoulder fused (with a ton of hardware) last year when I was 19 because my shoulder has been permanently dislocated for almost 5 years and my arm started to become a dead weight because of nerve issues. Just yesterday I had an appointment with a Shoulder Surgeon for my left shoulder and now we decided that fusion is the only option because with both of my shoulders because I have significant bone loss (which is very rare even in EDS) from my bones being grinded together constantly. I had tried braces like that, which all failed. Not going to lie I am not happy about it but it has to be done because of how little function I have. So in the next month ish it will be done. Fusion on one shoulder let alone two is unheard of especially in an 20 year old woman.
Why would they choose fusion over a reverse replacement? They cannot dislocate and don't require connective tissue stabilisation? I'm not asking as a criticism of your care, I'm asking because I don't know the answer to the question and wondered if you knew the procedure existed?
sarahwithstars I had no idea this type of replacement exists. But I did just do some research on it and it does says it is still possible to dislocate and be unstable. So even if we replaced the bones my connective tissue would still be effected. In addition another factor is my age artificial joints wear out and repeated surgeries over x amount of years is not ideal at all and it creates more and more scar tissues. If I was 40 or even mid to late 30s it could be a maybe but me being 20 is a different ball game. In addition these type of devices haven’t been studied long terms and the solutions for the problems that could arise haven’t been completely found. Shoulder Fusion is archaic so the risks are known for the most partand we didn’t want something to not work especially with however severe my arms are being effected in terms of nerve damage it was a do it or risk permanent damage. We also considered using cadaver ligament, tendons and muscle but since I had such extensive bone issues and the fact that my genetic code will eventually take over it would just be a band aid. It is a completely fair question btw!
I have EDS to I’m 13 and I have know that I have had it for about two years not, I am also an athlete so it doesn’t help because my knees dislocated all the time. I hope that one day you will not be in as much pain.❤️
So glad you can get a brace to help your shoulder. That is awesome. Good to see you looking healthy and feeling good. Take care and keep us updated on your progress with the brace.
My feet haven't grown since 7th grade either. I, however, cannot casually lift my foot up to my chin to show you my shoes. :) On another note, I just found this channel and just wanted to say I love your positivity. You seem to project a really infectious brightness which I can't help but reflect. Thank you for sharing everything with us. I'm really glad your brace seems to be working. As soon as you showed us how you can hold your humerus in place with your other hand, I was thinking "why not just have someone hold it in place for you?" and I'm really happy you found someone to do that for you, even if it's orthopedic hardware :)
@@imbored3208 Hoping to all the Ehlers Danlos Syndrome suffers that one day infusions will strenghen connective tissues. Part of my autoimmune disease is my heart begins to race and my blood pressure goes sky high and blood doesn't pump to my joints. Without blood pumping to the joints patience can often feel very dizzy and light headed. Also without blood pumping to the lungs, both the heart and the lungs become inflammed. This causes swelling inflammation and severe pain in joints and internal organs and eyes.
Glad it’s helping! Always a hit or miss thing with that stuff. My shoulders are shot from my chair, but I don’t have an EDS diagnosis, GP and POTS and SCI, among other things ♿️ Stay strong! 💪🏻
Sign me up for one of those shoulder braces! My left shoulder has been out for years but because of my neck I can not use standard shoulder braces. Good ol EDS!
I go to see an orthopedist for the first time next month I'm super excited. I have subluxations in my left hip, left shoulder wrists, collar bones, and elbows all the time. My pain management doctor after seeing them for 3 years just now told me that they don't manage connective tissue disorders..... I was super disappointed in them. While I'm not fully diagnosed yet I expected them to be taking my condition seriously. I'm also getting my genetic testing done in October too. So 🤞 So happy to see you getting something that is helping you! Now to keep you wearing it ( that's where I've had my issues but then again my braces weren't meant for my condition)
See thats what I'll m freaking out about..my skulls crushing my spine completley. I have cci and aai and need a surgery in maryland. But with eds we could die,longer healing,infection,severe scaring and most surgery take 1-2more than the original human healing.appreciate ur lives everyday
YAY your back i been waiting to see another video from you! im sooo glad that brass is working out for u :) and OMG that miranda sings impersonation is ON POINT hahahha u sound EXACTLY like her and u even do the person facials to hahahhh love it
I also have classical EDS and my left shoulder hangs out dislocated out all of the time as well. My spine is fused and that is the shoulder that was pushed up from my curve for so long. My scoliosis had a lot of rotation too so that shoulder is forever damaged. I can't have surgery for it at the moment because I already have a lot of surgeries coming up one being having my tethered spinal cord released. Hope the brace works for you. Mine works really well even though it can be a bit of a hassle to put on but at least it manages it for the time being. Best of luck to you!! #StayZebraStrong
My shoulder was like yours before surgery. A year on and it subluxes but it's way better than it was pre surgery. It has worsened my scapular winging but as it's my dominant arm it's been worth it. Do wait until your ready. It was horrific.
first hello. I'M SO HAPPY YOUR MAKING VIDEOS. I love your videos. You might have remembered me from other video comments. Anyways i hope i can meet you one day. You inspire me to keep going. I spread the word about EDS and i also explain to people about it. Love your videos hope i meet you one day 😊❤😊I also have EDS to
Hope the Sully brace helps your shoulder. My daughter is looking at all options and alternatives to shoulder surgery, I would love to know what this surgeon in Minnesota is proposing???is donated tendons what he suggested? 😊
so glad you ha e found a brace to fix your ahoulder or at least give you some comfort for the first time in so long you seem so much happier now that things are starting to get better with your health , your smiling way more and its a beautiful thing much love and best wishes to you may god bless you . 🙏🙏🙏💖💖💖
I can’t imagine having a dislocated shoulder for TWO years!! That’s crazy, I’ve had frequent dislocations since 2012 lol and it’s hurts every time. It was so bad because it dislocated with minor movements so I finally got the surgery and omg life changing! I love your attitude too BTW, this is the first video I’m seeing of yours too!
Rohit Shrestha After six weeks, doctors encourage three to six months of physical therapy to rebuild muscle strength and restore range of motion. (I only went to three sessions lol) This is for an Arthroscopic Surgery.
I NEED ONE!!! Also, isn’t it weird how we do something new and wonderful and our MCAS and Dysautonomia go bonkers? When you said it was your allergies I was thinking about time you’d had the brace off and maybe talking…or breathing (all those things we do) just was throwing you into hyper reactive mode because your body was SO relieved to not be in crisis “my arm is falling off” mode. That’s what I’d be thinking if it were me. Well it is absolutely in so many ways. My shoulder has been out for almost 4 years and the use of my right arm is the last of my concerns, too. I’m in full time PT, med time, lie flat mode the past few months. The X-rays and docs & PT come to the house now, which is nice because it was getting dangerous to walk to the car and drive a mile. Thank you for sharing. I get my Gluc & puke in 3 weeks and I feel ok about it because of your video. Thank you so much for this channel. 🦓🦓🦓
My left shoulder has a life of its own, as does many of my other joints. I sublux mostly though and if it hurts or not is really down to how it happens and the situation, and if it catches onto anything or not as it goes out or back in again. Sometimes it hurts a lot and I even make sounds, other times I just feel something doesn’t feel right and then I pop it back in. I use KT tape on my shoulders when I feel I need some stabilization and pain relief, I don’t think a shoulder brace would work at all for me as I don’t do well with neoprene or compression and I can’t handle stuff rubbing against my skin, so yeah, shoulder wise KT tape is my only aid... I also can’t wear a sling or sling type brace because of my neck issues
My shoulders are horrible too (bone on bon) and evrythings torn in both of them and my doctor told me there was nothing we could do short of a fusion but I think I may have to talk to him about this. Mine hangs down like yours does too. Thanks for sharing about the sully brace.
@@nigonkouk1770 Your comment is so inappropriate to Mickey and her family. You have a right to your opinion, but you do not have to display it when somebody wishes her well. If you don't like Mickey, stay away from her channel. Your comments show your lack of maturity and respect for other people.
Hey Mickey! Hope you are well! I love how inspiring and hands on you are with all of your medical things. I am getting a port placed and am very nervous. Can you please do a video on all things portacath. Like what it feels like to be accessed, do people look at it when it’s not accessed, seat belt placement?, what it’s like to have one, ect. Thank you so much for all you do!
@@rnnelson That's so sad for you! It must be terribly frustrating. My son's shoulders are awful. He's 18 right now, and is starting to experience a lot of pain and stuff. I hate to think what's ahead for him. I really hope you find some relief and that the medical community comes up with some advancements real soon!
I am 14 and have EDS as well. I have at least 7 dislocations a day. I know it is not as bad as you but it is also very painful. My worst joint is my right shoulder. It is very similar to your left shoulder. I had to wear that brace for a while with it in a sling as well. Then I found out my EDS caused me to have AMPS so I had to go through a whole process for that as well. After I went to a program for my AMPS my arm is much better I can move it and put pressure on it but I still can't go a day without only my shoulder dislocating at least 5 times a day. All of my other joints dislocate as well but not as frequently. I will usually have 5 shoulder dislocations and at least 2 other joint dislocations, mainly my hips, knees, ankles, elbows or wrists. After getting diagnosed with EDS I found your channel and it has helped me so much with everything. Thank you so much and keep being your amazing self.
My shoulders partially dislocate every single minute and every time I move my arm. I can’t reach for anything without it partially dislocating. The pain goes down to my fingers.
I’ve had the shoulder tightening surgery twice, 2 different methods by 2 different surgeons and my shoulder is far less functional than it was before surgery. If I could go back in time, and if I knew then that I had EDS, I would not have had the surgeries. I hope the brace proves to be helpful for you!
I had shoulder stabilisation surgery almost 20 years ago, for me it was very successful, the surgery estimated that with EDS that it had a 10% chance of failure, for me that was a chance worth taking.
I have EDS too and tbe doctors didn't want to do the surgery with putting your arm to your shoulder with screws and pins. (Sorry I'm not that good in English) But now I'm getting a surgery in which they use special wires to "sew" my arm-bone to my shouldertop..... Sooo .. It's a experimental surgery, and only ONE doctor does it in my country. He does it for a few years now ans has a lot of good reactions. So I'm exited!! Maybe it will be an option for your shoulder too? Because to me it causes a lot of pain. I look forward to it.
I have EDS too; I can relate to the body falling apart. I don’t have full dislocations but I do have subluxations, and they are incredibly painful. I wake up several times throughout the night with my shoulders or hips out of place. I also have a port and a feeding tube and all the things. EDS sucks
Ahhh! Mine isn’t as bad. My shoulder sits out of socket. I have to physically put it back in or sometimes I’m able to tighten my muscles and it can go back in, only to fall out again. 😂 I hope all goes well with you!!💜 I have surgery October 7th! My chest fall feel (thanks EDS) and its crushing my heart and lungs.
I dont have eds but have dislocated my left knee alot and it hurts so bad until it get put back in. I can only imagine the pain your in. I has my first dislocation at age 11. And now my knee slightly dislocates and i have to pop it back in
You’re getting so big oh my goodness God bless you love and I have idiot as well it’s undiagnosed from six physicians but I’ve been watching you for about four years now and just God bless you and keep your hopes up and your spirit hi #LifeWithStripes😍😍😘😘😍
I'm getting my ATM fixed next year :) I've had issues with my jaw dislocating forever, and I'm excited to be able to open my mouth more than a few centimeters and to speak without mumbling
What surgeon in Minnesota is offering the experimental shoulder surgery and what is the surgery? I have EDS and I'm scheduled for a capsule tightening In December and am currently looking at other options because the fail rate is so high but I've run out of options other than surgery.
I have EDS and I have had one shoulder operated on which was about 7 years ago and its absolutely fine. My other shoulder is going now so im hoping to get that done next year. It was one of the worst operations that I had but definitely worth it.
It was a bankart repair. It didn't work so then I had capsular shrinkage. That hasn't worked either and after the first operation it has always felt like the surgeon didn't line it up properly. I don't think I will have it done again until I really have to.
@Oxprah821 one shoulder is great but the other is not. It's the least of my problems really when so many other parts of my body are worse. You just have to keep going!
Just keep going because you never know what will change for you. I've been in constant pain since 16. Now I'm 50 and HRT has really helped. Shame I had to wait so long. Pregnancy hormones helped with pain but only through one pregnancy not both. I'm at the stage where I feel like something is wrong if I'm not in pain. Try and cut pain meds in half because you become more sensitive to pain.
Coming from someone who has joint and connective tissue issues (not EDS), I can say that after my long list of surgeries, none of them actually solved the issues but rather exacerbated the issues. Surgery is not a cure all! It can help CERTAIN people but some people can be left in a worst state than they were before. I always have people ask me "Why don't you just go get another surgery done?"
Bring on the hoodie season! Your smile and attitude are always wonderful to see. Have you ever done any sort of taping to keep joints in place? Or is that stuff useless with EDS?
Timothy Courtemanche It can be really helpful for EDS IF your skin can tolerate it. A of people with EDS also have MCAS and can have skin reactions to the tape. Or it can tear up the skin. Personally, I found taping incredibly helpful for a few months and then my skin stopped being able to tolerate it.
What type of EDS do you have? I have classic EDS and I’m getting over my second shoulder dislocation (which happened in my sleep) and surgery is the only option for me at this point.
Hey, it took a long time for people to notice something was wrong until I was too old to see a geneticist. My rheumatologist send me home and tells me basically I'm beyond his expertise however I'm having a lot of more issues and I'm starting to have to use my wheelchair a lot more despite being an ambulatory user. my team of doctors have made the consensus that I do have a form of EDS (as well as a bunch of other issues that I've always had but found out quiet late about, which also caused a lot of my issues) but once again until I see a geneticist they all they can do is try to help me feel better do you know any way I can figure out how to get my rheumatologist to check out the new issues I'm having cuz he just refuses. 😐
From one zebra to the other: OUCH! I have EDS and it is so painful and I have dislocated my shoulder just from cleaning a table! Yep, our bodies are like a crappy house with crappy mortar. It hurts like heck to dislocate a joint!!
I also watch another youtuber (izzy kornblau) whos knee kept dislocating and was like permanently out of place and she had surgery for it maybe 6 months ago or so. Thought you might want to know since even though its a different joint, she also has EDS and had a surgery for a similar reason.
I am from South Dakota and no doctor here seems to know what to do and they won't do surgery because of EDS. I have seen multiple doctors with no help and have been looking in to going to Minnesota to Mayo or something to find help. If it is ok to ask who is this doctor? I have been trying so hard to find someone to help me and I'm starting to give up hope.
have you ever had trouble with your feeding tube being dislodged and the balloon being right by your skin i was in the hospital cause of it and then the fond out my hemoglobin was very low i had to have a blood tranfusion so they could not fix my tube tell my hemoglobin went up
I have something called "Osteogenisis Imperfecta" and have had many many broken bones and a couple years ago I dislocated my shoulder the first dislocation I have ever had and when it did it actually shattered the ball and socket as well anyway having a dislocated shoulder is probably one of the worse pains I have had
That Miranda sings impression is spot on!
HI GUYS! It's me, Mirchella.
YES !!
I was thinking the same 😂👍🏻
i cant imagine the things you have to go through physically and emotionally and im so glad you have such a positive outlook on things and that you spread your beautiful smile and awareness ab these things to everyone you can. its so hard to find a reason to smile sometimes, so thank you for making me smile :)
That style brace really helps with my shoulder too. I don’t follow the instructions, I just put it where I need it. Braces are better than surgery because surgery wears off but braces can be tightened up repeatedly!! Thanks for another video Mickey!!! Glad to see you again.
4:00 Anyone who has had major surgery would never suggest "just" having surgery.We know there is nothing "just" about major surgery, and we know there are tons of reasons not to have it.
The rest can be ignored as ignorant.
I absolutely love how you smile through your pain and look amazing. I have Fibromyalgia and back and hip issues and I cannot change my pain face to a happy face. I wear it constantly. I applaud you for getting through all you go through.. it's a tough journey going through pain and still seeing the bright side of life... Keep smiling 🤗😘❤️❤️
I just lost my friend 3 years ago at age 24 to Eds so I couldn't bring myself to watch your videos without tearing up. It just reminded me of her too much looking at your totals and even the word EDS was too triggering for me. I am so glad that you are raising awareness for this disease. Keep doing what's your doing. This is the first video I was able to watch of you at this very moment just because it was too hard. I will try to watch more of your videos but forgive me if I cant watch all right away.
Girl where are the ads on your video?? Make that coin! 😊❤
You have to have a certain amount of engagement before you can qualify for monetization
surgery is always a risk with EDS anyway so its a wise option to wait on your part
Unless its cci or pinching nerves ect of course
That seems really difficult to take on and off
Ella Clark I love your profile picture! We have two of that artists originals in our house!
we have the same name lol
Great to see that the brace is comfortable and works great. You look great and I hope school is going good..
I wanted to take this moment to thank you for making this videos. I watched your “low profile” G tube video other day. The reason the video got into my feed was because I was looking for G tube procedures. I’m an IR technologist and we do this in our department.
Thank you 🙏
That brace looks awesome! I love the fine-tuning to fit your needs of moving the shoulder forward and up. Also, great Miranda impression!
I have exactly the same type of permanent dislocation as you, my shoulder brace has been a life saver. I wear an Orthoback Omo Neurexa Plus, it's the same idea as what you've got but a bit easier to get on.
So happy that you found this brace and that it helps!
Everything about her is just amazing. She’s upbeat, seems kind, understanding, and gorgeous.
You are such a freaking champ. I'm so happy the shoulder brace works for that shoulder of yours!
I love your makeup it looks so pretty!
Incredible lashes Mickey!!!
My mum has had a reverse shoulder replacement which is a sealed socket around a ball where the ball is on the scapula and the socket is closed around the ball (and can't disengage or dislocate) and the socket is attached to the rod that goes into the cored out humerus. Mum needed it because her smashed joint 30years ago lost all the bone connective tissue and muscle at the back in a netball accident where she was pushed into the netball post which displaced the joint- so when the plastic replacement joint from 1978 fell apart, her anatomy could never stabilise a standard titanium replacement joint that resembles our anatomy exactlu.
This titanium one now will last a lifetime. But it was designed for her in 2003... But at my hospital outside London now we see at least 2-3 of these joints used every three months or so which is an incredible advancement and could really help EDS patients (which is who we see them used for when it's their first replacement, but mainly it's used to replace old joints made in 70s/80s) My mum doesn't have any systemic problems, she went back to playing squash to specifically rehab that arm and now plays a lot of very competitive golf with zero issues from that shoulder and this socket type gives her 70-80% normal motion; not windmill rotation or vertical reach- neither of which she has ever had since her original injury at 18yrs old anyway.
Keep researching, sweety, surgery may not all be as scary and risky as you think- it may be how you eliminate your shoulder as a dominating problem area! As you say- you've got bigger shiz to deal with like ensuring you do not starve!! Keep balancing those *benefits* against risks+ inconveniences.
I love you xxxxxx
I’m happy you found something that helped. I just wish most bracing options didn’t make me think that I will have more trouble with heat and sweat in the Florida weather
I had surgery on my left shoulder the beginning of this year to stop it dislocating. My orthopaedic surgeon has done a different procedure because of my EDS and so far best decision ever. No dislocation since January
So glad to hear you found a brace to help!!! 💜👏🏼🙌🎉
Have you ever dislocated something trying to get a brace on
sup pepl I’ve subluxed constantly trying to get braces, or support socks on!
I dislocated my thumb while pulling on a compression sock in 2011 lol
Well compression socks make sense.
Rey Of Light I believe it!
Ugh yeasss
I had my right shoulder fused (with a ton of hardware) last year when I was 19 because my shoulder has been permanently dislocated for almost 5 years and my arm started to become a dead weight because of nerve issues. Just yesterday I had an appointment with a Shoulder Surgeon for my left shoulder and now we decided that fusion is the only option because with both of my shoulders because I have significant bone loss (which is very rare even in EDS) from my bones being grinded together constantly. I had tried braces like that, which all failed. Not going to lie I am not happy about it but it has to be done because of how little function I have. So in the next month ish it will be done. Fusion on one shoulder let alone two is unheard of especially in an 20 year old woman.
Oh jeez.
Why would they choose fusion over a reverse replacement? They cannot dislocate and don't require connective tissue stabilisation?
I'm not asking as a criticism of your care, I'm asking because I don't know the answer to the question and wondered if you knew the procedure existed?
sarahwithstars I had no idea this type of replacement exists. But I did just do some research on it and it does says it is still possible to dislocate and be unstable. So even if we replaced the bones my connective tissue would still be effected. In addition another factor is my age artificial joints wear out and repeated surgeries over x amount of years is not ideal at all and it creates more and more scar tissues. If I was 40 or even mid to late 30s it could be a maybe but me being 20 is a different ball game. In addition these type of devices haven’t been studied long terms and the solutions for the problems that could arise haven’t been completely found. Shoulder Fusion is archaic so the risks are known for the most partand we didn’t want something to not work especially with however severe my arms are being effected in terms of nerve damage it was a do it or risk permanent damage. We also considered using cadaver ligament, tendons and muscle but since I had such extensive bone issues and the fact that my genetic code will eventually take over it would just be a band aid.
It is a completely fair question btw!
I have EDS to I’m 13 and I have know that I have had it for about two years not, I am also an athlete so it doesn’t help because my knees dislocated all the time. I hope that one day you will not be in as much pain.❤️
So glad you can get a brace to help your shoulder. That is awesome. Good to see you looking healthy and feeling good. Take care and keep us updated on your progress with the brace.
My feet haven't grown since 7th grade either. I, however, cannot casually lift my foot up to my chin to show you my shoes. :)
On another note, I just found this channel and just wanted to say I love your positivity. You seem to project a really infectious brightness which I can't help but reflect. Thank you for sharing everything with us.
I'm really glad your brace seems to be working. As soon as you showed us how you can hold your humerus in place with your other hand, I was thinking "why not just have someone hold it in place for you?" and I'm really happy you found someone to do that for you, even if it's orthopedic hardware :)
Your eyelashes are so pretty how do you get them like that
Is called mascara.
Isabelle Gatenby ITs CaLleD MaSCAra
@@imbored3208
Hoping to all the Ehlers Danlos Syndrome suffers that one day infusions will strenghen connective tissues. Part of my autoimmune disease is my heart begins to race and my blood pressure goes sky high and blood doesn't pump to my joints. Without blood pumping to the joints patience can often feel very dizzy and light headed. Also without blood pumping to the lungs, both the heart and the lungs become inflammed. This causes swelling inflammation and severe pain in joints and internal organs and eyes.
I had the same dislocation 2 weeks ago and still hurts so I know what you feel for all the time. Stay strong girl! ❤
Glad it’s helping! Always a hit or miss thing with that stuff. My shoulders are shot from my chair, but I don’t have an EDS diagnosis, GP and POTS and SCI, among other things ♿️ Stay strong! 💪🏻
Sign me up for one of those shoulder braces! My left shoulder has been out for years but because of my neck I can not use standard shoulder braces. Good ol EDS!
I go to see an orthopedist for the first time next month I'm super excited. I have subluxations in my left hip, left shoulder wrists, collar bones, and elbows all the time. My pain management doctor after seeing them for 3 years just now told me that they don't manage connective tissue disorders..... I was super disappointed in them. While I'm not fully diagnosed yet I expected them to be taking my condition seriously. I'm also getting my genetic testing done in October too. So 🤞 So happy to see you getting something that is helping you! Now to keep you wearing it ( that's where I've had my issues but then again my braces weren't meant for my condition)
You must like Miranda Sings. Great impression 😂
See thats what I'll m freaking out about..my skulls crushing my spine completley. I have cci and aai and need a surgery in maryland. But with eds we could die,longer healing,infection,severe scaring and most surgery take 1-2more than the original human healing.appreciate ur lives everyday
Love this brace! Wish I had one my shoulder comes out during the night 🤦♀️
chronically H same here! Though it doesn’t look comfortable to sleep in
I love your makeup you look so pretty!
YAY your back i been waiting to see another video from you! im sooo glad that brass is working out for u :) and OMG that miranda sings impersonation is ON POINT hahahha u sound EXACTLY like her and u even do the person facials to hahahhh love it
I also have classical EDS and my left shoulder hangs out dislocated out all of the time as well. My spine is fused and that is the shoulder that was pushed up from my curve for so long. My scoliosis had a lot of rotation too so that shoulder is forever damaged. I can't have surgery for it at the moment because I already have a lot of surgeries coming up one being having my tethered spinal cord released. Hope the brace works for you. Mine works really well even though it can be a bit of a hassle to put on but at least it manages it for the time being. Best of luck to you!! #StayZebraStrong
I'm classical too ♡
My shoulder was like yours before surgery. A year on and it subluxes but it's way better than it was pre surgery. It has worsened my scapular winging but as it's my dominant arm it's been worth it. Do wait until your ready. It was horrific.
first hello. I'M SO HAPPY YOUR MAKING VIDEOS. I love your videos. You might have remembered me from other video comments. Anyways i hope i can meet you one day. You inspire me to keep going. I spread the word about EDS and i also explain to people about it. Love your videos hope i meet you one day 😊❤😊I also have EDS to
Hope the Sully brace helps your shoulder. My daughter is looking at all options and alternatives to shoulder surgery, I would love to know what this surgeon in Minnesota is proposing???is donated tendons what he suggested? 😊
Dislocated my finger holding my phone to watch this 😂🦓😭
Girl same 😂
Same here it was sad box I have school in 2 days
Em Sheppard so painful!😭
Curtis Raymond did you get it back in place ?!
Yes thankfully and plz call me lue because this is my dads account I am just on it
so glad you ha e found a brace to fix your ahoulder or at least give you some comfort for the first time in so long you seem so much happier now that things are starting to get better with your health , your smiling way more and its a beautiful thing much love and best wishes to you may god bless you . 🙏🙏🙏💖💖💖
I also have EDS hyper mobility and my shoulders and hips dislocate everyday
Spot the zebra...foot up by face lol
damn, and i thought i was tough for getting both hips replaced at 26(avascular necrosis femoral heads). but you are a real and true badass
I can’t imagine having a dislocated shoulder for TWO years!! That’s crazy, I’ve had frequent dislocations since 2012 lol and it’s hurts every time. It was so bad because it dislocated with minor movements so I finally got the surgery and omg life changing!
I love your attitude too BTW, this is the first video I’m seeing of yours too!
How's ur shoulder now?
Rohit Shrestha No complications! I can actually do things without feeling restricted. It’s almost been a year since the surgery and no dislocations.
@@amberlysoto how much weeks will it require for recovery?
Rohit Shrestha After six weeks, doctors encourage three to six months of physical therapy to rebuild muscle strength and restore range of motion.
(I only went to three sessions lol)
This is for an Arthroscopic Surgery.
@@amberlysoto do you have some clicking sound on your shoulder?
I just wanted to say you're an incredibly strong person. I have a friend who also has EDS and I know how difficult things are for her.
I NEED ONE!!! Also, isn’t it weird how we do something new and wonderful and our MCAS and Dysautonomia go bonkers? When you said it was your allergies I was thinking about time you’d had the brace off and maybe talking…or breathing (all those things we do) just was throwing you into hyper reactive mode because your body was SO relieved to not be in crisis “my arm is falling off” mode. That’s what I’d be thinking if it were me. Well it is absolutely in so many ways. My shoulder has been out for almost 4 years and the use of my right arm is the last of my concerns, too. I’m in full time PT, med time, lie flat mode the past few months. The X-rays and docs & PT come to the house now, which is nice because it was getting dangerous to walk to the car and drive a mile. Thank you for sharing. I get my Gluc & puke in 3 weeks and I feel ok about it because of your video. Thank you so much for this channel. 🦓🦓🦓
My left shoulder has a life of its own, as does many of my other joints. I sublux mostly though and if it hurts or not is really down to how it happens and the situation, and if it catches onto anything or not as it goes out or back in again. Sometimes it hurts a lot and I even make sounds, other times I just feel something doesn’t feel right and then I pop it back in. I use KT tape on my shoulders when I feel I need some stabilization and pain relief, I don’t think a shoulder brace would work at all for me as I don’t do well with neoprene or compression and I can’t handle stuff rubbing against my skin, so yeah, shoulder wise KT tape is my only aid... I also can’t wear a sling or sling type brace because of my neck issues
My shoulders are horrible too (bone on bon) and evrythings torn in both of them and my doctor told me there was nothing we could do short of a fusion but I think I may have to talk to him about this. Mine hangs down like yours does too. Thanks for sharing about the sully brace.
I hove everything is going well with you.
@@nigonkouk1770 Your comment is so inappropriate to Mickey and her family. You have a right to your opinion, but you do not have to display it when somebody wishes her well. If you don't like Mickey, stay away from her channel.
Your comments show your lack of maturity and respect for other people.
Hey Mickey! Hope you are well! I love how inspiring and hands on you are with all of your medical things. I am getting a port placed and am very nervous. Can you please do a video on all things portacath. Like what it feels like to be accessed, do people look at it when it’s not accessed, seat belt placement?, what it’s like to have one, ect. Thank you so much for all you do!
They can use cadaver ligaments instead of our stretchy ones. I would love to have a "horse" set of ligaments!!!! The zebra ones are just too fickle.
@@rnnelson That's so sad for you! It must be terribly frustrating. My son's shoulders are awful. He's 18 right now, and is starting to experience a lot of pain and stuff. I hate to think what's ahead for him. I really hope you find some relief and that the medical community comes up with some advancements real soon!
You have such beautiful eyes and eyelashes! Love your videos! 😊
I am 14 and have EDS as well. I have at least 7 dislocations a day. I know it is not as bad as you but it is also very painful. My worst joint is my right shoulder. It is very similar to your left shoulder. I had to wear that brace for a while with it in a sling as well. Then I found out my EDS caused me to have AMPS so I had to go through a whole process for that as well. After I went to a program for my AMPS my arm is much better I can move it and put pressure on it but I still can't go a day without only my shoulder dislocating at least 5 times a day. All of my other joints dislocate as well but not as frequently. I will usually have 5 shoulder dislocations and at least 2 other joint dislocations, mainly my hips, knees, ankles, elbows or wrists. After getting diagnosed with EDS I found your channel and it has helped me so much with everything. Thank you so much and keep being your amazing self.
My shoulders partially dislocate every single minute and every time I move my arm. I can’t reach for anything without it partially dislocating. The pain goes down to my fingers.
0:31 she sounded like Miranda Sings.
I’ve had the shoulder tightening surgery twice, 2 different methods by 2 different surgeons and my shoulder is far less functional than it was before surgery. If I could go back in time, and if I knew then that I had EDS, I would not have had the surgeries. I hope the brace proves to be helpful for you!
I had shoulder stabilisation surgery almost 20 years ago, for me it was very successful, the surgery estimated that with EDS that it had a 10% chance of failure, for me that was a chance worth taking.
Ahhh a new post love you this made my day
Wait what was the only discomfort u had it cut off
I'm in my 9th year with the shoulder dislocated, keep your head up champ
I have EDS too and tbe doctors didn't want to do the surgery with putting your arm to your shoulder with screws and pins. (Sorry I'm not that good in English)
But now I'm getting a surgery in which they use special wires to "sew" my arm-bone to my shouldertop.....
Sooo .. It's a experimental surgery, and only ONE doctor does it in my country. He does it for a few years now ans has a lot of good reactions. So I'm exited!!
Maybe it will be an option for your shoulder too?
Because to me it causes a lot of pain. I look forward to it.
Thank you for sharing. I have been having shoulder issues too. I will look into it indeed!
I have EDS too; I can relate to the body falling apart. I don’t have full dislocations but I do have subluxations, and they are incredibly painful. I wake up several times throughout the night with my shoulders or hips out of place. I also have a port and a feeding tube and all the things. EDS sucks
Ahhh! Mine isn’t as bad. My shoulder sits out of socket. I have to physically put it back in or sometimes I’m able to tighten my muscles and it can go back in, only to fall out again. 😂
I hope all goes well with you!!💜
I have surgery October 7th! My chest fall feel (thanks EDS) and its crushing my heart and lungs.
Same here. Mine has been permanently subluxed since I was 12, almost 40 years of my muscles holding it in place subconsciously!
I dont have eds but have dislocated my left knee alot and it hurts so bad until it get put back in. I can only imagine the pain your in. I has my first dislocation at age 11. And now my knee slightly dislocates and i have to pop it back in
You’re getting so big oh my goodness God bless you love and I have idiot as well it’s undiagnosed from six physicians but I’ve been watching you for about four years now and just God bless you and keep your hopes up and your spirit hi #LifeWithStripes😍😍😘😘😍
Your eyelashes always look so amazing. What mascara do you use?
My shoulders constantly dislocating .
Crikey, Mickey! That is a beast of a brace! I hope it gives you some much needed relief! xxxxxxxxx
Will you do a room tour video when your room is done?!
I'm getting my ATM fixed next year :)
I've had issues with my jaw dislocating forever, and I'm excited to be able to open my mouth more than a few centimeters and to speak without mumbling
What surgeon in Minnesota is offering the experimental shoulder surgery and what is the surgery? I have EDS and I'm scheduled for a capsule tightening In December and am currently looking at other options because the fail rate is so high but I've run out of options other than surgery.
I have EDS and I have had one shoulder operated on which was about 7 years ago and its absolutely fine. My other shoulder is going now so im hoping to get that done next year. It was one of the worst operations that I had but definitely worth it.
It was a bankart repair. It didn't work so then I had capsular shrinkage. That hasn't worked either and after the first operation it has always felt like the surgeon didn't line it up properly. I don't think I will have it done again until I really have to.
@@dropdeadfred73 so how are you doing now? Hope all is fine.
@Oxprah821 one shoulder is great but the other is not. It's the least of my problems really when so many other parts of my body are worse. You just have to keep going!
@@dropdeadfred73 Even though i don't have that worst condition of it. Still cant take it anymore sometimes. Best of luck to you ❤️
Just keep going because you never know what will change for you. I've been in constant pain since 16. Now I'm 50 and HRT has really helped. Shame I had to wait so long. Pregnancy hormones helped with pain but only through one pregnancy not both. I'm at the stage where I feel like something is wrong if I'm not in pain. Try and cut pain meds in half because you become more sensitive to pain.
Coming from someone who has joint and connective tissue issues (not EDS), I can say that after my long list of surgeries, none of them actually solved the issues but rather exacerbated the issues. Surgery is not a cure all! It can help CERTAIN people but some people can be left in a worst state than they were before. I always have people ask me "Why don't you just go get another surgery done?"
Bring on the hoodie season! Your smile and attitude are always wonderful to see.
Have you ever done any sort of taping to keep joints in place? Or is that stuff useless with EDS?
Timothy Courtemanche It can be really helpful for EDS IF your skin can tolerate it. A of people with EDS also have MCAS and can have skin reactions to the tape. Or it can tear up the skin. Personally, I found taping incredibly helpful for a few months and then my skin stopped being able to tolerate it.
Elliot Elephants thank you! I forgot about how fragile skin can be for someone with EDS.
Lol at the Miranda voice! 😂
Do you too always suffer from scarring and inflammation after an operation and very slow healing and rehabilitation?
i have that exact brace and dislocated my shoulder with it on and almost completely tore my rotator cuff and labrum causing me to need surgery.
What type of EDS do you have? I have classic EDS and I’m getting over my second shoulder dislocation (which happened in my sleep) and surgery is the only option for me at this point.
I have had a fusion on my shoulder and I am not sure it was a good idea an interested in this brace for my other shoulder
Hey, it took a long time for people to notice something was wrong until I was too old to see a geneticist. My rheumatologist send me home and tells me basically I'm beyond his expertise however I'm having a lot of more issues and I'm starting to have to use my wheelchair a lot more despite being an ambulatory user. my team of doctors have made the consensus that I do have a form of EDS (as well as a bunch of other issues that I've always had but found out quiet late about, which also caused a lot of my issues) but once again until I see a geneticist they all they can do is try to help me feel better do you know any way I can figure out how to get my rheumatologist to check out the new issues I'm having cuz he just refuses. 😐
From one zebra to the other: OUCH! I have EDS and it is so painful and I have dislocated my shoulder just from cleaning a table! Yep, our bodies are like a crappy house with crappy mortar. It hurts like heck to dislocate a joint!!
I have that too but I have jhs joint hypomotility syndrome even though I am eleven
I also watch another youtuber (izzy kornblau) whos knee kept dislocating and was like permanently out of place and she had surgery for it maybe 6 months ago or so. Thought you might want to know since even though its a different joint, she also has EDS and had a surgery for a similar reason.
I am from South Dakota and no doctor here seems to know what to do and they won't do surgery because of EDS. I have seen multiple doctors with no help and have been looking in to going to Minnesota to Mayo or something to find help. If it is ok to ask who is this doctor? I have been trying so hard to find someone to help me and I'm starting to give up hope.
2:19 Yeah, neat party trick. I can do that with my thumb. Check it out. -Pops bottom thumb joint in and out.- COOL RIGHT? We're basically twins now.
Used the same exact sully brace to play hockey after I dislocated my left shoulder! Also live in Minnesota!
have you ever had trouble with your feeding tube being dislodged and the balloon being right by your skin i was in the hospital cause of it and then the fond out my hemoglobin was very low i had to have a blood tranfusion so they could not fix my tube tell my hemoglobin went up
This is the only time I have ever really even kind of enjoyed a little jazz :[) LoL
Hello from a fellow Midwesterner! Stay strong :)
I have eds also but no more insurance so no more doctors I have my left shoulder and right knee out currently
Thank Night lot of love tired so tired so trying sleep trying sleep going sleep going sleep I’m bad yes okay
Totally random but you look so much like brooklyn and bailey in this video!
It looks like a lot to do every day but I'm glad it works
Speaking of shoulders...someone man handles me and now I have to have surgery cause my tendon and cartilage are torn. Ugh...im wondering If it pays.
I’m so happy for you!💗!
Maybe could you look into the lens at us to connect better?
I have something called "Osteogenisis Imperfecta" and have had many many broken bones and a couple years ago I dislocated my shoulder the first dislocation I have ever had and when it did it actually shattered the ball and socket as well anyway having a dislocated shoulder is probably one of the worse pains I have had
One of my friends dislocated her shoulder and got surgery this summer and is now able to do sports again and she had to wear that kind of brace.
My knee has been dislocated for 5 years!!!! And I’m getting surgery on October ninth!!!!!!
Hope surgery went well. ❤️
I hope your surgery went well!
how did the surgery go?
The_Angry_Angora Thank you. Working harder every day😀
Abby Goodman Thank you😀
Your eyelashes are beautiful. What mascara did you use?