To be honest I never heard of Ehlers Danlos Syndrome before but I must say I'm impressed how open you are (I know it's totally routine for you) and thanks for teaching people like me about it. I wish you all the best
Kelsey Lovato I couldn’t have said it any better. If it weren’t for this video I would’ve never know what Ehlers Danlos Syndrome were. So thank you for that. 💗:)
@@thatweirdscienceguy9880 it's a connective tissue disorder that affects the Collagen? In the skin (Collagen makes up alot of your joints and skin). It makes your joints and skin stretchy and prone to dislocations. It can effect your gi system, mast cells etc. Alot of people with it can have dysautonomia too
I just got diagnosed and I have a question, why do most people with EDS have feeding tubes? I have a person who also has Eds and a feeding tube and they’re saying bc I don’t have a feeding tube I’m “faking it” (even tho I’ve been diagnosed with many doctors saying the same thing) anyone wanna help a girl out with some info?
It happens to me all the time and I actually had a doctor tell me it wasn't possible for me to dislocate me hip :/ I know the difference between a sublux and a dislocation :P
When I get insomnia (always) I use duolingo until I fall a sleep, some of the cool perks is that I now can understand some italian, french and portuguese.
XergeDevil I have really bad chronic insomnia and duolingo. I always struggle to find time to use it though. This is a great idea and I'm going to try it next time! Thanks!
Ma'am, YOU ARE AMAZING.My daughter has CYSTIC FIBROSIS. She had a feeding tube from shortly after birth to her mid teens. WE 'thought' WE had a lot to do BUT ""WOW"" YOU have her beat, granted she had to do MULTIPLE NEBULIZER MEDICINES and use a special device to shake her chest, BUT YOU have a MORE COMPLICATED routine than we ever did. CONGRATULATIONS on being able to do this on a daily basis and still have a GREAT ATTITUDE! THANK YOU FOR being a witness that folks can make use of.
I just have Hypermobility but having joints pop out of socket is an also an every day thing for me! I feel like as I’ve gotten older the more bendy I’ve gotten. I totally feel you popping joints back into place. It used to scare me and now I’m like “give me a sec.. I just need to relocate my shoulder/hip”
I loved this video!! I wish we could see more of you putting your dislocations back in place! I'm super interested because I have hEDS but dont dislocate much...I just hurt haha
Isabelle Kornblau hey I've got EDS too and I hurt so much, I do dislocate some times and I don't need any medications. Sadly now I live in Switzerland and the doctors over here don't really understand this condition. Love to talk for tips and stuff.
Yeah, I completely understand! It took me forever to finally find a doctor who understood the condition well, and I'm sure it's not easy if there really aren't any doctors knowledgeable in EDS where you are. Two things that have helped my pain tremendously have been a heating pad and Duloxetine, which is an SNRI. My pain management doctor prescribed it for me instead of an EDS specialist, so maybe a pain management doctor do the same for you if you decided you were interested in medicatins! I love connecting with other EDS warriors. :)
Great video! Although I must say that it’s always bewildered me when I hear people with EDS say that they “pop their joints back in place”. I have Ehlers Danlos too and that’s really not an issue for me. My joints crack a lot and it definitely hurts but the true dislocations I have had were few and definitely were not something I could’ve fixed on my own. I definitely couldn’t have popped my shoulder into place at home, nor would I have even dared to because of how freaky it looked and how much it hurt! To be honest, EDS is a nonissue on the daily for me-I probably would’ve never known I have it if it wasn’t for my cardiologist mentioning the possibility. I see a cardiologist for my Sick Sinus Syndrome and cardiomyopathy that are unrelated to EDS, so it’s not like I have POTS or anything like that. Sometimes I wonder if I do have it or not because although a lot of the signs and symptoms are there (hyperlaxity, vascular abnormalities, mitral valve prolapse, marfanoid appearance), I haven’t ever needed a feeding tube or anything like that. I probs throw up more than the average person but thankfully I can live a fairly normal life and go to college. Is EDS always this severe or is it possible to have it and not really be significantly impaired by it? Should I expect for it to get worse? Sometimes I truly wonder if I was misdiagnosed or if I’m just extremely lucky.
I'm so glad that a RUclipsr is educating the world on the topic of Ehlers Danlos Syndrome. Just like cancer and ALS I believe we should raise some awareness for EDS as well. There are some extreme cases out there and it may not be deadly all the time (if it's vascular it can take your life at a young age) but a lot of the time it is painful or frustrating and sometimes leads to serious anxiety or depression.
Girl I feel for ya. My doctors are testing me for Eds, intracranial hypertension, and spinal bifida. I'm happy to finally see a youtuber around my age with alot of the same problems. Stay strong!
You are such a strong, beautiful girl. I have this this called fibrous dysphia and I have to take 49 pills a week. I'm not comparing myself to you or anyone one else bc yours is way worse then mines. I'm sorry you have to go through that but seeing things like this to inspire me I had my 4th surgery this year and I remember watching you. You are so helpful and got me through what I needed to thank you so much😘
I found this video after Snapchat had a spotlight on EDS. I was curious as to how it worked and so on. I don’t have EDS, but watching this video has inspired me so much. You have a joy for life that is unmatched and I honestly aspire to love life as much as you do. Keep doing you!!!! :)
i have eds my self and i love how you can so openly talk about, it’s something i wish i could do. This is something that makes someone like myself or any other person with this illness feel so much better and less alone. Your content is so real and you are so strong!!
Hi Life with Stripes - my goddaughter has EDS. I admire you so much for your optimism and your total command of your symptoms and all the things that you need to do each day to manage your illness. It is clear that you have a strong zest for life and I am praying that we see more research on EDS and hopefully find some kind of “ cure” for the illness. I have another chronic illness that also has no treatment and no cure. I hope you are doing well. It’s November of 2022. We haven’t heard from you in a while so I hope all is well with you. Sending you my love and prayers.
Love videos like this! I am a nursing student and I love seeing the everyday aspects of living with a chronic illness/illness! It has taught me so much watching videos like this! Thank you for making videos, and all the best!
I love how positive you are and how grateful you are despite your situation u inspire me so much some of use are in perfect condition but are not grateful for what we have you are such an inspiration to all of us.all the prayers to you hope u will always stay positive and think on the brighter side of life❤️ Wishing you luck on the long run
My sister had this and has crps (complex regional pain syndrome) because of it. EDS has many things that can be side effects of it and my sister seemed to have gotten the whole lot. She is only 9 and I cant even imagine what her life is like with so many differences. P.S. great job on being so positive and strong through this experience. You are very inspiring. 😊
Ehlers danlos syndrome runs in my family, and it affects me since I’m a gymnast. After watching this, I feel extremely grateful! You are so strong and positive through out this. Go you! ❤️
Hey...BTW.. my son had a stoma, then a g-tube, he started to get granula tissue, it was painful for him. His PC recommended a "burn" cream, made for burn victims..it doesnt burn. We got a HUGE "vat" of it lol I cant remember what it was called, BUT his granula tissue all went away...and it looked like yours. Maybe mention it to your PC, i hope it could help. Having a feed tube is bad enough, but granula makes it a pain lol..
Your have such a beautiful personality. I showed your videos to my friend who got injured in car accident and had to live with a lot of extra tube on her body. She said your routine really motivate her to take care of herself and learn to be independent with her treatment. Thankyou so much!
You’re a real life beautiful angel baby for opening up your life for others to see. This really helps so many people in so many ways! Thank you so much for sharing your life sweetheart!! BTW kudos to your family for raising such a well spoken, intelligent and courageous young girl!! 😘😘🙏🏼🙏🏼💖💖
So, I'm not sure how accepted this is, but it was super cool to watch this. I always enjoy watching other people with chronic disorders because my own chronic disorders are just not... like, severe to where they interfere with daily life for me too much. My lungs are a bit problematic, but I have spot medication for them. My other disorders are mental, so I always watch others who have it "worse" then me, because it's empowering for days I feel like just crashing. (My main chronic issues are ODD, Depression, and Anxeity from trauma) so watching this just really brightened it up because your still working and smiling throughout the day and you have so much more that you go through. I don't know if my message came out totally right but I'm hoping it was somewhat understood
You are without a doubt one of the most beautiful souls on the planet. Thank you for sharing this and bless you for how sweet and positive you are through all of your struggles ❤
I love how you just randomly say "oh well I just dislocated my hip" and you weren't even dramatic or anything you are probably the worlds bravest person
For the pills that come in pop-out packets, I pop a bunch out beforehand and put them in an empty med bottle or baggie, especially if it is a med I need immediate access to like benedryl.
Im 25 and I was just recently diagnosed with EDS type 3 & ME & CFS (Myalgic encephalomyelitis & Chronic Fatigue syndrome), thanks for the insight and incredibly relatable videos for those of ur with chronic illness! Thankfully I haven’t needed a G tube or port but there has been quite the journey getting here. Just found your channel & immediately subscribed🤗
I'm not sure how I stumbled across this video (I stepped away from my laptop and this video was playing when I came back). But wow, God bless. You're amazing and strong for going through this daily. You are an inspiration.
My first video from you and i love how positive you are and how you don't let illness get the best of you and take you in to depression. You are truly inspiring.😙💛
I have EDS, as well as muscle laxity and some other health issues. You are so amazing and inspirational and I am so glad I finally found a youtuber I can relate to! I hope you are having an amazing day and that God will use you to do amazing things!
Life sucks when it feels like u r constantly dealing with a severe flu and sometimes just cant get out of bed. I am a 12 year old girl who has 9 chronic illnesses and I just love watching videos of other chronic illness warriors because it helps me realize that I am not the only one who feels like a sick zombie daily love u
I know how you feel baby girl I'm going through something similar. My kidneys don't work and I need dialysis 3 times a week so my hats off to u. Thank you so much for being so brave, and for showing us your video. Much love and respect ✌️🤗❤️
I really loved seeing this and I appreciate you sharing these parts of your life with us! I have EDS, but I don't dislocate too much yet, usually my hips, but I do hurt a lot all the time. Two things!! 1.) I loVE YOUR PJS where did you gET THEM 2.) you have syrian hamsters which need about 3x more space and a 12 inch wheel! The 6 inch wheel will curve their spine and cause permanent damage and pain. My ham LOVED the flying saucers they're about $20 at petco! :) You keep kicking Ehler's butt gal pal!
I was looking for another spoonie channel to watch & I'm so glad I found yours. I don't have ED. My illness affects my muscles and joints, so it's very different but I love seeing you share your life. You got my sub!!!
You are very inspiring. Its my first time to watch a video like this. Thanks for sharing your day with us. Keep that positivity in your heart. Take care always and God bless you! 😙
I never know that about diet sofa tick before! My 8 year old daughter is Type 1 and sometime when we go to the movie she wants soda but I’m always to worries it’ll get mixed up and not be diet and she’ll get a high(it’s happened before) I’m def gonna try that sometime !
Hilary M You could bring diet soda with you from outside. Get a can or bottle and put it in your purse. I do that where I’m from since buying soda at the movies here costs an arm and a leg.
You are a remarkable young lady. I have a chronic disease, and have my daily procedures also, but nothing like you have. I’ll stop complaining. I see you have pets. My doctor stresses the importance of pets, and I do understand. During those days when you just want to cry, it is nice to have someone to hug. Take care of yourself. I look forward to more videos. Pat
I was watching your video and just started crying when you hip popped out of place because no one should have to go through that and go through the pain you do on daily basis and I’m sorry you have to go through this and you are so brave thank you for being so brave
Wow what a inspiration you are. So full of life despite this serious health issue. You're such a gorgeous young lady and hopefully you continue to live life with so much enthusiasm and life.
With everything you have to do to keep yourself in the best condition, you would be a amazing nurse! And this may make me sound stupid, but i always thought ports had alot bigger holes, i never realized there was only a little needle(not little, but smaller) i always have see accessed ports, and i thought the clear part covered a massive hole... 🤔 makes sense tho that its not
your positive attitude is so much like Christina Doherty. your smile is infectious and you are such a witness to how attitude affects the rest of life. you take it all so matter of factly and in stride. I am sure there are days that aren't so bright but you have a great start on a great life.
I love that feeling when you get to de-access, and the skin under the dressing gets to breathe and you can have a good scratch! That's my favourite thing about needle change days! I like that safety mechanism on your needle, what sort is yours?
Love your eyes and the thing I love most is how inspiring you and and positive I know it can be hard sometimes but it’s always best to stay positive ♥️♥️♥️♥️ luv yaaaaaaaaaaaaa and I’m praying 🙏🏾 for u always!!!!
You are inspiring! 🌸💞 It's tough remaining positive and upbeat throughout chronic illness, but you're doing a totally amazing job! Big love from Australia 💞
Hi Mickey!! I have been watching your channel for a few weeks now and just love you and your channel! I really enjoyed this video and have watched it many times. Please do more in depth DITL’s in the future! I also love seeing you set up your infusions and feed bags, so please do more of those!!!!
i’ve never heard of EDS until i started watching your videos. today i went to the doctors and was told i have PoTS and possibly EDS. can’t imagine what a dislocation feel like
Is very interesting to see how you live your life, even tho you have to take medication every day your still happy as if nothing was happening you are truly an inspiration to me.
Aubrey Seifer -- you would be suprised at how easily you get used to it... I had this HORRIBLE fear of needles for the longest time!.. I used to beg for a kid"s needle and like had to have my bf hold my hand and distract me ( and I was 24 at this time lol!) and now I have to give myself injections and I am so used to is now that fear goes away..it also feels different when 'you' are the one taking control of your own health, it's actualy weirdly empowering actualy..
Hannah Schaffer i hope you get through this i’ve had my stomach pumped a few times don’t know if it’s the same feeling but just breathe and drink while doing it and it will get easier also they put some cream on my nose to make it go down easier i hope this helps i’m sorry if it doesn’t
You're more resilient than you give yourseld credit!! I was super scared of needles, but 6 months ago was diagnosed with MS and now need a intramuscular (in the muscle) shot, and the needle is insanely long, while it still scares me, I've really come a long way from my first shot!!
I have POTS also known as dysautonomia, EDS, fibromyalgia, and some GI problems and a couple other things I can’t remember off the top of my head. U are such an inspiration 💙💙
I feel really included looking at these day in the life videos. Like I’m part of something. I have Crohn’s which is a lot less maintenance than a lot of what I’ve seen (for me anyway) and it sounds weird but it makes me happy to see us all as a community
I take the same pill she took when the drink made her sick, because I have a strange thing that makes so sick and I end up going the er once a month. No doctor knows what it is, and you're so brave and strong.
I don't have any medical condition or anything but I occasionally have to pop my hip or knees back into place and sometimes it makes me feel old (I'm only 13!) because having to do that is usually associated with old age but I'm just happy that it doesn't hurt when my bones go out of place and I have to put them back but I think it's cool that you're so cool and chill about EDS
I know many people who have disabilities and certain things. For having to deal with all these things, you are absolutely amazing! I know someone with down syndrome, many with ADHD, someone with ADD, Autism, Asperger's syndrome, my brother could have ADD, I have been diagnosed with certain things as well. I am a bit squeamish and get grossed out easily. I have also been pushed in a wheelchair for no reason. This is random, but it is when I fractured my foot, and they wouldn't let me "walk out" with the crutches, they pushed me to my mom's car. I know people with problems like acid reflex, and a hole in her ear, so she gets ear infections easily, and someone with a disabled brother, and gluten free, as well as lactose intolerant. I am also sort of allergic to food dyes. I also have hurt my arms with sprains a lot too. Anyway, I get it and feel so bad you have to deal with it.
Omgosh I just found your channel. I was diagnosed later in life with EDS and it’s been a miracle finally knowing what I have, but scary too. The worst is my daughter has it too but thank god we got the diagnosis.
Very beautiful! I had to be on a feeding tube for a year. I had stomach cancer but now it's spread to my bones and muscles. Every day is rough do to the pain and having to do everything on my own.
Oh my thank you! When you were talking about having a dehydration headache it finally clicked for me why my head was hurting so much, had a large glass of milk (most people tend of retain ~2/3 of the amount they drink according to studies) and I felt better not long after!!
Oh my gosh god bless you I will support your channel as much as I can your so open about this which I probably wouldn’t be able to do you are sooo brave
You're so brave sharing your life and experiences with this condition and that I hope that it'll educate others. Thanks for sharing and all the best for your health. ❤️♥️
You are such a very strong girl to do that every day, I admire you so much. You have taught me so many things in this video .Thank you for making this video and keep it up ....
Just to add to that meter trick to check soda make sure you take the lid off and test one of the small droplets because some meters will get an error instead of a reading if there is too much liquid!
I have diabetes and I have a pump and I thought it was bad to put a small yellow tube in my belly, but you have a much larger tube and keep on going and be so positive❤️❤️
I truly hope you are well soon my heart goes out to you and your family my son had two heart surgeries before he was 14 months old now I have a beautiful grand daughter who is sweet as sugar I thank God every day for both of them
When I was younger I had a port for my illness you don’t have to cover your port when you shower but when you do go to the pool ,lake, etc you do have to cover it cause of infections
Thank heavens for my J PEG, I have less granulation with the new tube. When I do have granulation, I use silver nitrate to cauterize. Also, I have my power port flushed at Hematology/Oncology. Good luck to you in the coming year !! 😘
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To be honest I never heard of Ehlers Danlos Syndrome before but I must say I'm impressed how open you are (I know it's totally routine for you) and thanks for teaching people like me about it. I wish you all the best
Kelsey Lovato I couldn’t have said it any better. If it weren’t for this video I would’ve never know what Ehlers Danlos Syndrome were. So thank you for that. 💗:)
Kelsey Lovato I don’t understand what it is
@@taylorphares1224 I don't really either to be honest. Can somebody explain?
@@thatweirdscienceguy9880 it's a connective tissue disorder that affects the Collagen? In the skin (Collagen makes up alot of your joints and skin). It makes your joints and skin stretchy and prone to dislocations. It can effect your gi system, mast cells etc. Alot of people with it can have dysautonomia too
@@morebeansplease102 thanks so much for clearing this up.
wow what a positive and strength woman you are keep it up girl
*laughing* “welp, i just dislocated my hip” i have EDS type 3 and i don’t think i’ve ever related to anything as much as i just did😂😂😂😂
Michaella Williams SAME!!!!
Michaella Williams I say welp there goes the cracking.
I roll my ankles all the time
Very beautiful young lady 🙏
I just got diagnosed and I have a question, why do most people with EDS have feeding tubes? I have a person who also has Eds and a feeding tube and they’re saying bc I don’t have a feeding tube I’m “faking it” (even tho I’ve been diagnosed with many doctors saying the same thing) anyone wanna help a girl out with some info?
It happens to me all the time and I actually had a doctor tell me it wasn't possible for me to dislocate me hip :/ I know the difference between a sublux and a dislocation :P
You're a rockstar every darn day. Praying when you see this, you're having a good day and/or that this may help you smile. You are amazing!😊
People with these types of illnesses are the strongest people ,your soul is a soul of a warrior
When I get insomnia (always) I use duolingo until I fall a sleep, some of the cool perks is that I now can understand some italian, french and portuguese.
XergeDevil I have really bad chronic insomnia and duolingo. I always struggle to find time to use it though. This is a great idea and I'm going to try it next time! Thanks!
Bad Xerge I do Japanese lol
I use it when I’m bored and I managed to learn to read some of the Russian alphabet over the summer
Me too but I read.
omg that's actually pretty awesome. I always stay up late bc I can't go to bed and now you gave me a idea to use that. Thank you :))
Ma'am, YOU ARE AMAZING.My daughter has CYSTIC FIBROSIS. She had a feeding tube from shortly after birth to her mid teens. WE 'thought' WE had a lot to do BUT ""WOW"" YOU have her beat, granted she had to do MULTIPLE NEBULIZER MEDICINES and use a special device to shake her chest, BUT YOU have a MORE COMPLICATED routine than we ever did. CONGRATULATIONS on being able to do this on a daily basis and still have a GREAT ATTITUDE! THANK YOU FOR being a witness that folks can make use of.
I just have Hypermobility but having joints pop out of socket is an also an every day thing for me! I feel like as I’ve gotten older the more bendy I’ve gotten. I totally feel you popping joints back into place. It used to scare me and now I’m like “give me a sec.. I just need to relocate my shoulder/hip”
Elyse Herman yep!! This!! 🙌🏻🙌🏻
I loved this video!! I wish we could see more of you putting your dislocations back in place! I'm super interested because I have hEDS but dont dislocate much...I just hurt haha
Isabelle Kornblau I'm interested too although that relocation sound was a little hard to hear 😅 I always connect pain with that sound 😐
hahahah yes, completely agree!!
Isabelle Kornblau hey I've got EDS too and I hurt so much, I do dislocate some times and I don't need any medications. Sadly now I live in Switzerland and the doctors over here don't really understand this condition. Love to talk for tips and stuff.
Yeah, I completely understand! It took me forever to finally find a doctor who understood the condition well, and I'm sure it's not easy if there really aren't any doctors knowledgeable in EDS where you are. Two things that have helped my pain tremendously have been a heating pad and Duloxetine, which is an SNRI. My pain management doctor prescribed it for me instead of an EDS specialist, so maybe a pain management doctor do the same for you if you decided you were interested in medicatins! I love connecting with other EDS warriors. :)
Great video! Although I must say that it’s always bewildered me when I hear people with EDS say that they “pop their joints back in place”. I have Ehlers Danlos too and that’s really not an issue for me. My joints crack a lot and it definitely hurts but the true dislocations I have had were few and definitely were not something I could’ve fixed on my own. I definitely couldn’t have popped my shoulder into place at home, nor would I have even dared to because of how freaky it looked and how much it hurt! To be honest, EDS is a nonissue on the daily for me-I probably would’ve never known I have it if it wasn’t for my cardiologist mentioning the possibility. I see a cardiologist for my Sick Sinus Syndrome and cardiomyopathy that are unrelated to EDS, so it’s not like I have POTS or anything like that. Sometimes I wonder if I do have it or not because although a lot of the signs and symptoms are there (hyperlaxity, vascular abnormalities, mitral valve prolapse, marfanoid appearance), I haven’t ever needed a feeding tube or anything like that. I probs throw up more than the average person but thankfully I can live a fairly normal life and go to college. Is EDS always this severe or is it possible to have it and not really be significantly impaired by it? Should I expect for it to get worse? Sometimes I truly wonder if I was misdiagnosed or if I’m just extremely lucky.
I'm so glad that a RUclipsr is educating the world on the topic of Ehlers Danlos Syndrome. Just like cancer and ALS I believe we should raise some awareness for EDS as well. There are some extreme cases out there and it may not be deadly all the time (if it's vascular it can take your life at a young age) but a lot of the time it is painful or frustrating and sometimes leads to serious anxiety or depression.
Girl I feel for ya. My doctors are testing me for Eds, intracranial hypertension, and spinal bifida. I'm happy to finally see a youtuber around my age with alot of the same problems. Stay strong!
You are such a strong, beautiful girl. I have this this called fibrous dysphia and I have to take 49 pills a week. I'm not comparing myself to you or anyone one else bc yours is way worse then mines. I'm sorry you have to go through that but seeing things like this to inspire me I had my 4th surgery this year and I remember watching you. You are so helpful and got me through what I needed to thank you so much😘
I found this video after Snapchat had a spotlight on EDS. I was curious as to how it worked and so on. I don’t have EDS, but watching this video has inspired me so much. You have a joy for life that is unmatched and I honestly aspire to love life as much as you do. Keep doing you!!!! :)
i have eds my self and i love how you can so openly talk about, it’s something i wish i could do. This is something that makes someone like myself or any other person with this illness feel so much better and less alone. Your content is so real and you are so strong!!
Girl you are STRONG. I honestly can't even believe you take so much medicine. Keep fighting girl, I support you. 😭❤️
I love how positive you are about this and seem to not expect pity. It’s cool that your not afraid to show your life
Hi Life with Stripes - my goddaughter has EDS. I admire you so much for your optimism and your total command of your symptoms and all the things that you need to do each day to manage your illness. It is clear that you have a strong zest for life and I am praying that we see more research on EDS and hopefully find some kind of “ cure” for the illness. I have another chronic illness that also has no treatment and no cure.
I hope you are doing well. It’s November of 2022. We haven’t heard from you in a while so I hope all is well with you. Sending you my love and prayers.
Love videos like this! I am a nursing student and I love seeing the everyday aspects of living with a chronic illness/illness! It has taught me so much watching videos like this! Thank you for making videos, and all the best!
I love how positive you are and how grateful you are despite your situation u inspire me so much some of use are in perfect condition but are not grateful for what we have you are such an inspiration to all of us.all the prayers to you hope u will always stay positive and think on the brighter side of life❤️
Wishing you luck on the long run
Ur eyes and eyelashes are amazing 😍😍
Everything Emily the eyelashes are fake only boys have that long eyelashes
Nope my lashes are real! I use Cargo Cosmetics Boundless lashes mascara and I've always had naturally long lashes
Life with Stripes sorry
FederalMonster Wow, that was rude
+Life with Stripes I also have long eyelashes naturally but I do not use mascara
My sister had this and has crps (complex regional pain syndrome) because of it. EDS has many things that can be side effects of it and my sister seemed to have gotten the whole lot. She is only 9 and I cant even imagine what her life is like with so many differences. P.S. great job on being so positive and strong through this experience. You are very inspiring. 😊
Ehlers danlos syndrome runs in my family, and it affects me since I’m a gymnast. After watching this, I feel extremely grateful! You are so strong and positive through out this. Go you! ❤️
Hey...BTW.. my son had a stoma, then a g-tube, he started to get granula tissue, it was painful for him. His PC recommended a "burn" cream, made for burn victims..it doesnt burn. We got a HUGE "vat" of it lol I cant remember what it was called, BUT his granula tissue all went away...and it looked like yours. Maybe mention it to your PC, i hope it could help. Having a feed tube is bad enough, but granula makes it a pain lol..
Was it Silvadene? That's wonderful stuff. Big blue tub.
Cheryl Blake yes mam it was...it IS fabulous!!!
Beck Allen I
Beck Allen is
Your have such a beautiful personality. I showed your videos to my friend who got injured in car accident and had to live with a lot of extra tube on her body. She said your routine really motivate her to take care of herself and learn to be independent with her treatment. Thankyou so much!
You’re a real life beautiful angel baby for opening up your life for others to see. This really helps so many people in so many ways! Thank you so much for sharing your life sweetheart!! BTW kudos to your family for raising such a well spoken, intelligent and courageous young girl!! 😘😘🙏🏼🙏🏼💖💖
So, I'm not sure how accepted this is, but it was super cool to watch this. I always enjoy watching other people with chronic disorders because my own chronic disorders are just not... like, severe to where they interfere with daily life for me too much. My lungs are a bit problematic, but I have spot medication for them. My other disorders are mental, so I always watch others who have it "worse" then me, because it's empowering for days I feel like just crashing. (My main chronic issues are ODD, Depression, and Anxeity from trauma) so watching this just really brightened it up because your still working and smiling throughout the day and you have so much more that you go through. I don't know if my message came out totally right but I'm hoping it was somewhat understood
You are without a doubt one of the most beautiful souls on the planet. Thank you for sharing this and bless you for how sweet and positive you are through all of your struggles ❤
I love how you just randomly say "oh well I just dislocated my hip" and you weren't even dramatic or anything you are probably the worlds bravest person
For the pills that come in pop-out packets, I pop a bunch out beforehand and put them in an empty med bottle or baggie, especially if it is a med I need immediate access to like benedryl.
Alex Needs Spoons why would you need immediate access to Benedryl?
Roe Skylar allergic reaction
I do this too! Hate popping pills out everyday
Im 25 and I was just recently diagnosed with EDS type 3 & ME & CFS (Myalgic encephalomyelitis & Chronic Fatigue syndrome), thanks for the insight and incredibly relatable videos for those of ur with chronic illness! Thankfully I haven’t needed a G tube or port but there has been quite the journey getting here. Just found your channel & immediately subscribed🤗
I'm not sure how I stumbled across this video (I stepped away from my laptop and this video was playing when I came back). But wow, God bless. You're amazing and strong for going through this daily. You are an inspiration.
Girl. That trick with the tape to keep your tube in place... Game changer!! I never thought to do that with my son's tube, but I need to start!!!
My first video from you and i love how positive you are and how you don't let illness get the best of you and take you in to depression. You are truly inspiring.😙💛
It’s amazing how positive you are even with everything going on in your life!! I will be keeping you in my prayers ❤️
I have EDS, as well as muscle laxity and some other health issues. You are so amazing and inspirational and I am so glad I finally found a youtuber I can relate to! I hope you are having an amazing day and that God will use you to do amazing things!
Life sucks when it feels like u r constantly dealing with a severe flu and sometimes just cant get out of bed. I am a 12 year old girl who has 9 chronic illnesses and I just love watching videos of other chronic illness warriors because it helps me realize that I am not the only one who feels like a sick zombie daily love u
I know how you feel baby girl I'm going through something similar. My kidneys don't work and I need dialysis 3 times a week so my hats off to u. Thank you so much for being so brave, and for showing us your video. Much love and respect ✌️🤗❤️
I really loved seeing this and I appreciate you sharing these parts of your life with us! I have EDS, but I don't dislocate too much yet, usually my hips, but I do hurt a lot all the time.
Two things!!
1.) I loVE YOUR PJS where did you gET THEM
2.) you have syrian hamsters which need about 3x more space and a 12 inch wheel! The 6 inch wheel will curve their spine and cause permanent damage and pain. My ham LOVED the flying saucers they're about $20 at petco! :)
You keep kicking Ehler's butt gal pal!
I was looking for another spoonie channel to watch & I'm so glad I found yours. I don't have ED. My illness affects my muscles and joints, so it's very different but I love seeing you share your life. You got my sub!!!
You are very inspiring. Its my first time to watch a video like this. Thanks for sharing your day with us. Keep that positivity in your heart. Take care always and God bless you! 😙
You're inspiring! It's hard to stay positive and always optimistic, but you do a great job!
Great love from Iraq
All I can say is, "Wow." Such courage and grace! Young lady, you are ... amazing.
Mickey, you are so courageous! I had cancer when I was three but I'm 14 mow and still embarrassed to talk about it! You are so pretty! GO YOU!!!
I never know that about diet sofa tick before! My 8 year old daughter is Type 1 and sometime when we go to the movie she wants soda but I’m always to worries it’ll get mixed up and not be diet and she’ll get a high(it’s happened before) I’m def gonna try that sometime !
Hilary M You could bring diet soda with you from outside. Get a can or bottle and put it in your purse. I do that where I’m from since buying soda at the movies here costs an arm and a leg.
You are a remarkable young lady. I have a chronic disease, and have my daily procedures also, but nothing like you have. I’ll stop complaining.
I see you have pets. My doctor stresses the importance of pets, and I do understand. During those days when you just want to cry, it is nice to have someone to hug.
Take care of yourself. I look forward to more videos. Pat
“Zofran to the rescue” my new life motto
Right! Lol
zofran is my god
I was watching your video and just started crying when you hip popped out of place because no one should have to go through that and go through the pain you do on daily basis and I’m sorry you have to go through this and you are so brave thank you for being so brave
Wow what a inspiration you are. So full of life despite this serious health issue. You're such a gorgeous young lady and hopefully you continue to live life with so much enthusiasm and life.
LOVE YOUR LASHES!! YOU'RE A BEAUTIFUL, STRONG WARRIOR!! (I have mito, and syringomyelia, and my daughter has EDS
With everything you have to do to keep yourself in the best condition, you would be a amazing nurse! And this may make me sound stupid, but i always thought ports had alot bigger holes, i never realized there was only a little needle(not little, but smaller) i always have see accessed ports, and i thought the clear part covered a massive hole... 🤔 makes sense tho that its not
your positive attitude is so much like Christina Doherty. your smile is infectious and you are such a witness to how attitude affects the rest of life. you take it all so matter of factly and in stride. I am sure there are days that aren't so bright but you have a great start on a great life.
I have EDS and i have rough times but i watch your videos to make me happy and relate to. I never met someone else with EDS.
I love that feeling when you get to de-access, and the skin under the dressing gets to breathe and you can have a good scratch! That's my favourite thing about needle change days! I like that safety mechanism on your needle, what sort is yours?
Love your eyes and the thing I love most is how inspiring you and and positive I know it can be hard sometimes but it’s always best to stay positive ♥️♥️♥️♥️ luv yaaaaaaaaaaaaa and I’m praying 🙏🏾 for u always!!!!
You are inspiring! 🌸💞 It's tough remaining positive and upbeat throughout chronic illness, but you're doing a totally amazing job!
Big love from Australia 💞
This looks hard and the way she gets through it is just inspiring
Hi Mickey!! I have been watching your channel for a few weeks now and just love you and your channel! I really enjoyed this video and have watched it many times. Please do more in depth DITL’s in the future! I also love seeing you set up your infusions and feed bags, so please do more of those!!!!
You are amazing! Such an inspiration despite the pain you are in and complications of EDS.
By the way, your nails are so pretty. I love doing mine and I’m old. 64 to be exact. I pray for you often. God bless!
I’m so happy to see others with the same illness and have a bright outlook.
i’ve never heard of EDS until i started watching your videos. today i went to the doctors and was told i have PoTS and possibly EDS. can’t imagine what a dislocation feel like
Is very interesting to see how you live your life, even tho you have to take medication every day your still happy as if nothing was happening you are truly an inspiration to me.
I wouldn’t be able to do that everyday I would be crying
Aubrey Seifer -- you would be suprised at how easily you get used to it... I had this HORRIBLE fear of needles for the longest time!.. I used to beg for a kid"s needle and like had to have my bf hold my hand and distract me ( and I was 24 at this time lol!) and now I have to give myself injections and I am so used to is now that fear goes away..it also feels different when 'you' are the one taking control of your own health, it's actualy weirdly empowering actualy..
Aubrey Seifer I say that too but sadly it’s suspected I may have it
Hannah Schaffer i hope you get through this i’ve had my stomach pumped a few times don’t know if it’s the same feeling but just breathe and drink while doing it and it will get easier also they put some cream on my nose to make it go down easier i hope this helps i’m sorry if it doesn’t
You're more resilient than you give yourseld credit!! I was super scared of needles, but 6 months ago was diagnosed with MS and now need a intramuscular (in the muscle) shot, and the needle is insanely long, while it still scares me, I've really come a long way from my first shot!!
@@hannahscott6604 have what
Your eyes are sooo pretty!!!!! Btw i love you soo much you inspire me!!!
You are such a Brave, and AMAZING young women! You inspire me so much! Im praying for you!!
You truly are a strong girl to go through everything that u do everyday.. yr are an inspiration to all.. and a beautiful and positive individual!!💚💛
With someone with Type 1 all I can is that I love your videos and what you do.
You are so strong and are such an inspiration to all!!lots of love💕💕😍
Take my hat off to you for this video and all that you are going through with smiles. I salute you
Compliments.
I have POTS also known as dysautonomia, EDS, fibromyalgia, and some GI problems and a couple other things I can’t remember off the top of my head. U are such an inspiration 💙💙
I feel really included looking at these day in the life videos. Like I’m part of something. I have Crohn’s which is a lot less maintenance than a lot of what I’ve seen (for me anyway) and it sounds weird but it makes me happy to see us all as a community
Girl.. my heart goes out to you. What an inspiration..
I take the same pill she took when the drink made her sick, because I have a strange thing that makes so sick and I end up going the er once a month. No doctor knows what it is, and you're so brave and strong.
You're so strong and positive. Sorry you have to go through such a medical issue. Newly subscribed!
I don't have any medical condition or anything but I occasionally have to pop my hip or knees back into place and sometimes it makes me feel old (I'm only 13!) because having to do that is usually associated with old age but I'm just happy that it doesn't hurt when my bones go out of place and I have to put them back but I think it's cool that you're so cool and chill about EDS
I know many people who have disabilities and certain things. For having to deal with all these things, you are absolutely amazing! I know someone with down syndrome, many with ADHD, someone with ADD, Autism, Asperger's syndrome, my brother could have ADD, I have been diagnosed with certain things as well. I am a bit squeamish and get grossed out easily. I have also been pushed in a wheelchair for no reason. This is random, but it is when I fractured my foot, and they wouldn't let me "walk out" with the crutches, they pushed me to my mom's car. I know people with problems like acid reflex, and a hole in her ear, so she gets ear infections easily, and someone with a disabled brother, and gluten free, as well as lactose intolerant. I am also sort of allergic to food dyes. I also have hurt my arms with sprains a lot too. Anyway, I get it and feel so bad you have to deal with it.
Omgosh I just found your channel. I was diagnosed later in life with EDS and it’s been a miracle finally knowing what I have, but scary too.
The worst is my daughter has it too but thank god we got the diagnosis.
Very beautiful! I had to be on a feeding tube for a year. I had stomach cancer but now it's spread to my bones and muscles. Every day is rough do to the pain and having to do everything on my own.
Oh my thank you! When you were talking about having a dehydration headache it finally clicked for me why my head was hurting so much, had a large glass of milk (most people tend of retain ~2/3 of the amount they drink according to studies) and I felt better not long after!!
You are so brave and I’m so sorry you have to go through this but you are doing so well xxx
Oh my gosh god bless you I will support your channel as much as I can your so open about this which I probably wouldn’t be able to do you are sooo brave
omg I couldn't even imagine doing or being in you position! I hope you the best and just gotta say, you are STRONG GURRRRRRRL
honestly you are so positive that makes my day thank you so much hope all the best for u in your life.
Your adorable 😭
I wish you the very best.
You also deserve many more subs
Your skin looks amazing!! and its great that your granuloma tissue isn't hurting this time! It can be awful to deal with!
You're so brave sharing your life and experiences with this condition and that I hope that it'll educate others. Thanks for sharing and all the best for your health. ❤️♥️
Ok I’m never complaining about my morning again! Thanks for sharing and explaining!!!
You are such a very strong girl to do that every day, I admire you so much. You have taught me so many things in this video .Thank you for making this video and keep it up ....
I have SUCH a hard time getting my hips back in.. really impressed by your ability to do that.
I have a much milder form of ehlers Danlos too! This is sooo cool to see!!
Just to add to that meter trick to check soda make sure you take the lid off and test one of the small droplets because some meters will get an error instead of a reading if there is too much liquid!
I never would’ve thought about using the glucometer to check the sodas! I’m a nurse, so I can share that bit w others! Great tip.
I have diabetes and I have a pump and I thought it was bad to put a small yellow tube in my belly, but you have a much larger tube and keep on going and be so positive❤️❤️
You are so positive 😍 I love your energy. You go girl! 🙌🏽⭐️
I love that bgl meter drink thing - I just don’t drink if I’m not sure - no more wasted drinks😃😃😃
Wow! It’s so amazing how positive you stay in spite of everything! God bless you!❤️✝️
I truly hope you are well soon my heart goes out to you and your family my son had two heart surgeries before he was 14 months old now I have a beautiful grand daughter who is sweet as sugar I thank God every day for both of them
I like that up beat music it really describe s your personality. And it comes through with the way you handle your life. Keep it up.
Do you have to cover the port when you shower or swim? Or is it okay for it to be covered/ submerged in water?
P.s very good informational video!
When I was younger I had a port for my illness you don’t have to cover your port when you shower but when you do go to the pool ,lake, etc you do have to cover it cause of infections
😁
Ports are under your skin soo there is nothing to cover,unless you have it accessed 24/7 then yes you need to cover it no matter what.
Thank heavens for my J PEG, I have less granulation with the new tube. When I do have granulation, I use silver nitrate to cauterize.
Also, I have my power port flushed at Hematology/Oncology.
Good luck to you in the coming year !! 😘