Follow me on Instagram: @life.with.stripes Check out LWS Merch: www.redbubble.com/people/life... My mom has a blog about what its like raising medically complex kids, click here to read: www.raisingstripes.blog
Пікірлер: 224
@MissBaileyPro4 жыл бұрын
WOO SHOUTOUT lol
@LifewithStripes4 жыл бұрын
What the heck, you watch these videos? haha Love you Cod
@marinakiell10694 жыл бұрын
“Got this tip from Mary Frey; put it in the cabinet” 😂👍🏼
@hennessygarciahg4 жыл бұрын
Marina Kiell I love the Frey life
@mixpeace13754 жыл бұрын
Okay A) You're a sweetheart B) Your humor is on point C) You're adorable!
@susanmargaretwills64323 жыл бұрын
Mariah Peace ~ hi it's October '20... where is our cute Mickey Girl?
@thelittlesucculent83354 жыл бұрын
I want to see more day in the life videos including medical and non medical related!
@catherinerose50614 жыл бұрын
It's so interesting the things that certain places let you do at home vs make you have an appt for. Like someone came to access your port, but Mary does it herself. And you do your granulation tissue, but Amy goes in for that
@iammellbell3 жыл бұрын
It's so crazy hey!
@curtisbemis66405 ай бұрын
Amy was a blessing , I'll forever love her and miss her.
@DanielJohnson-ec8rkАй бұрын
I’m 50 years old and having a J-Tube placed in a couple days. There are few videos on this and I REALLY APPRECIATE you doing this video to educate the rest of us
@gracehofferbert51393 жыл бұрын
This is my first video. I got a feeding tube yesterday. I am still in the hospital. Thank you so much for making this video and for cracking jokes while making it. I'm a fellow zebra and I'm accused of having dark humor. It's nice to know that I'm not alone with this. The tube feeding is alien to me, as I've had a Hickman port for most of this year and I was fed through that. Anyways, thank you again, I'll be watching more of your videos.
@clairestephens49163 жыл бұрын
GIRL!!! I'm an empath and that silver nitrate stuff, dayummm, I felt your PAIN. May I just say how incredibly adorable you are though. When I was your age, I know I wouldn't have been able to handle all the things you have to do to maintain your health. You are a mighty strong woman!!!
@maaggiied25544 жыл бұрын
Hey I had a gtube for 16 years and it never leaked. My mum is a nurse and she stopped putting gauze around it because it just sat moisture on it so it would get really gross. She started just cleaning around it multiple times a day and then it healed really nice and never leaked. The gauze sits moisture on top so it never dries and irritates really bad. Just a thought from what worked for me!! Love your videos and us zebras gotta stick together through these high risk times. Stay safe!
@mibelloaleman2 жыл бұрын
Mickey, you break my heart! I suffer knowing how you suffer, struggle with life, and yet you always smile! I just discovered your channel and was so, so saddened knowing all you've been through, and yet you are so strong, so positive, great sense of humor that there is no doubt you're a God sent! Your positivity and perspective (INDEED perspective) helps others who are feeling miserable, like I have been feeling for almost 3 weeks. I came across your video because I am having digestion problems and HORRIFIC migraines, specifically severe pain on the back of my skull (I fear a brain tumor). I think it is very cruel for people like yourself who are not able to eat, I don't understand why a higher power would allow this, especially with someone as beautiful, gentle soul, and happy camper as you. I have been suffering for weeks, not able to do anything, nothing to compare with what you're going through, but when I see your videos, I suck it up and only think of you and how I wish you would get better and better and live a long, long life. You are precious! Thank you for sharing, which has helped me so much!
@failynnblack40304 жыл бұрын
They've shut down all schools here until April 17th, so I feel your pain. It's weird how, in school, you hate it and then you're out due to pandemic and you miss school.
@thin_white_duke14 жыл бұрын
Failynn black for me school helps me keep my routine, now I’m just a sack of potatoes laying in my bed.
@LifewithStripes4 жыл бұрын
I loved it when I was I school too! I love everything about college and it class was one of the highlights of my week! Im so sad its over :(
@kaelynnmercier6284 жыл бұрын
my school is shut down until may 1st. i’m in band and i’m up because now we won’t have our band concert or marching band practices for a while :(
@emilymcmann31504 жыл бұрын
Ikr
@failynnblack40304 жыл бұрын
@@thin_white_duke1 SAME
@danaverkerk69574 жыл бұрын
I was just rewatching your old videos yesterday because I missed you, and know you’re back! Yay! Loved the video, makes me feel like I’m not the only one having to do these things. Especially in video form and with your awesome personality!
@allison24874 жыл бұрын
You’re such a kind soul and I learn so much from you as a nursing student! Thanks for sharing your life with us love
@markwood3334 жыл бұрын
I've been with your channel for 2 years and I love it
@fiendi2n38r824 жыл бұрын
You've been through a lot, but your eyes are so full of life. I wish you all the best
@chrissmith23223 жыл бұрын
You are a inspiration to young people and I’m proud of you
@BrookeAmber034 жыл бұрын
How do you sort and store all your medical supplies? (I know I've seen older videos, but maybe an updated version?) Also maybe medical night time routine?
@kellyeasterwood27003 жыл бұрын
I know exactly how you feel hon, I've had a stomach tube since I was born and it can be a real pain taking care of it sometimes but you know what every single G tube living human being is stronger than the pain that's felt every day and you can make it through this, I did, so I know you can! Good luck sweetheart, also you're very beautiful!!! 😊❤ Much love to ya! 💓💓💓
@tylerbird1359 Жыл бұрын
You are a trooper, I am amazed at your bubbly personality. As a person with gastroparesis, and fellow tubie, I know how hard this is, mine is a j tube and a g tube separate, with Crohn's pretty severe so you portray the good and the bad here and I luv you for that keep it up, ed is miserable thanks for the videos
@penelopepolinsneemeyer47574 жыл бұрын
Hi Mickey! It’s so nice to have you back on KZfaq xxxxxxxxxxxx
@billdoty64383 жыл бұрын
I have watched several on here with chronic illness, but you are the cutest, a close 2nd is Kenna K. .what you go through in a day is unbelievable , compared to those of us who can just take eating for granted. Much respect to you 💪
@annjean87093 жыл бұрын
You are such a beautiful person! Both inside and out!🤗 Thank you for sharing your morning routine!
@chronic_chiari_warrior74814 жыл бұрын
Love this! I'm a Frey Life fan! And a fan of yours!!!
@banditschnauzer27424 жыл бұрын
This was so cool! Love your sense of humor and your amazing positivity! Ps I found your channel from tiktok!
@missybarnes74004 жыл бұрын
I have no school until the end of the year. so that's going to be fun.
@emilymcmann31504 жыл бұрын
Same
@michelleteutsch85914 жыл бұрын
What? Where do you come from?
@emilymcmann31504 жыл бұрын
@@michelleteutsch8591 England
@mirthedejong1834 жыл бұрын
M2
@mirthedejong1834 жыл бұрын
@@michelleteutsch8591 here in the netherlands if you dont go to primary school you sit at home till summervacation
@catloverKD4 жыл бұрын
I would appreciate a full summary of all your conditions, whatever meds you feel like sharing and/or any medical routines. I'm a serious medical nerd and you are so complex, I can't keep everything straight.
@nubiacardenas96984 жыл бұрын
I believe she talks about them in an earlier video.
@chinchillamdgamer4 жыл бұрын
She also talks about them here and if you know anything about medicine then you are probably already familiar with the complications that Ehlers Danlos causes. Go read the Merck Manual on gastroparesis, connective tissue disorders and so on....
@caroldeaton6194 жыл бұрын
Thank you for uploading again it's so good to see you. Stay safe God bless
@hannahsandmire33424 жыл бұрын
I loved the Mary Frey reference! She’s the best ❤️
@markwood3334 жыл бұрын
I would love to see another day in the life I love seeing those vids. My mom works with kids like you
@LulaMae214 жыл бұрын
Thanks for showing this. I'm a neonatal RN and occasionally care for babies with fresh g-tubes (we use Kangaroo and Joey pumps although I have seen a couple go home on Infinity pumps). My sister has POTS and MALS and is trying to get evaluated for EDS, which is how I found your channel. Best wishes for health and safety through this pandemic.
@norajung45134 жыл бұрын
I am enjoying seeing you again. Bummer that you are not able to have any online classes right now. Hopefully they will set them up soon so you can keep up with your studies. Stay healthy and happy.
@curtisbemis66404 жыл бұрын
That's a crazy trick with priming lol God bless you Mickey
@breejones1404 жыл бұрын
I want to see an updated brace/ mobility aid collection!
@chronically_bqueenb4 жыл бұрын
I love your attitude about chronic illness which I know personally all too well
@OliKeepingTheFaith4 жыл бұрын
I love watching your videos! You remind me of my little sister and what she would be like if she had EDS. Thankfully I’m the only one out of all 5 of my siblings that have it. Stay safe Mickey! 💙
@fmj19784 жыл бұрын
I'm the only one out of 4 siblings that have it. My sister is jealous of my hypermoblity but then she sees a joint dislocate and changes her mind 😅
@kerrimcvinney60814 жыл бұрын
When I first started watching you (probably a year or year and a half ago) I saw your intro where you have the word "hope" on there and then "Maisy" above the puppers so I just assumed your name was Hope lol
@alexisfrye78814 жыл бұрын
so nice to hear that other people my age like to read and enjoy school!!
@amandabiddle13893 жыл бұрын
I'm a relatively new viewer and I just came across this video. Sarah's Key is my favorite book of all time. I hope you enjoyed it.
@just_caitlin4 жыл бұрын
I'm so sorry that you were in pain with burning off the granulation tissue! Sending hugs!
@kumiankka4554 жыл бұрын
my infusion port gave me sepsis last november. something i never wanna experience again 😬
@michealruthrosier31814 жыл бұрын
I want see a Feeding tube tips and tricks
@Strudi884 жыл бұрын
What happen to the service dog you had once?
@saraperham55834 жыл бұрын
i love sarah’s key! i would suggest watching the movie when you finish the book!
@Chronicallylinds4 жыл бұрын
❤️❤️love this!!! Could you cover your adrenal issues please in a video? I would love to hear about your symptoms as I have similar issues x
@number_9663 жыл бұрын
Your eyes are really pretty! That is really random but I couldn't stop looking at them
@Akaruiumi31nihon4 жыл бұрын
Actually it would be interesting to see your PT exercises.😉
@oliviabazelow50844 жыл бұрын
I have a 9/9 on the Beighton Scale and bad joints, I don't know what to do.. I am in tween years and do cheer. I love your channel, I have been watching for a while now. ❤❤❤
@marialewczyk37284 жыл бұрын
OmG!! Sarah's Key is my fav book!! There is a movie too!! it made me cry :(
@KrissyCreature4 жыл бұрын
You're brave priming the tube with you mouth. I use to prime by dripping in a cup or sink, but it was a gravity feeding
@joseGutierrez-mb3wh4 жыл бұрын
i love your videos and your eyes !!
@jeremyfield41484 жыл бұрын
Love to see you making videos again 😀
@buttercupsas14 жыл бұрын
Hey there :) I am new here :) I am 23 and I just found your channel 💛 your so strong and amazing :) I lost my dad to cancer two years ago on April 3,2018 🥺😔🤍👼🏼 ! I graduated from college last spring with my degree in general business and received a marketing certificate :) I currently am dealing with patella femoral syndrome and been dealing with this since 2012-2020 but didn’t get diagnosed until 2016 ! i’ve done pt twice and still have symptoms 🙄😔 i see the sports dr monday to see what he’ll say and want me to do ! i use a brace for exercising ! i’ve been strengthening for 10’months and still have pain :( so i hear ya ! I wish people would understand what pain is like ! :/ my knee pain comes and go but no one thinks it real when it is :( anyways your so pretty and strong ! you are inspirational and you make my day ! you even make me smile to :)
@TheLazyHusky4 жыл бұрын
Could you make a video on how you clean your tubes/medical equipment? Or your physical therapy? I've been in physical therapy for years and its cool to see different methods out there.
@hanneloreburssens77514 жыл бұрын
My feeding rate is 60ml/h too! Love Youri video’s! ❤️❤️
@isthisnametaken66184 жыл бұрын
A video you could do that I think would be fun and educational is "how to pop joints back in place" or something like that. Like you could show us how you pop your joints back, and maybe give us some tips and tricks on how to prevent dislocations? Because God knows I could use some advice recently. My joints have been sliding all over the place lately, and they don't want to go back in for some reason, so maybe I just need another technique, and yours could work for me? ❤😘
@thaliaoneal38474 жыл бұрын
I have the same feedings infinity sets bag and pump love your video 💕
@itsaneel4 жыл бұрын
AHHHH I didn't know other people's collarbones popped out tooooo. Thats kinda neat to know!
@sadbhfalconer15634 жыл бұрын
Day in the Life
@daisyrobson95084 жыл бұрын
You are awesome girl! xx
@shannongreenwell12782 жыл бұрын
I have the same type you do, but mine is type two. And yea I have to deal with my hips subluxations. And always being in excruciating pain! . From one zebra 🦓 to another one I am keeping you in my prayers and sending my love ❤️ to you!
@heidyroberts50512 жыл бұрын
Thank you form sharing this !
@michimelody40364 жыл бұрын
Advise for those who have EDS but didn't test positive on the genetic test? I have all the symptoms, all my other doctors say it should be on my chart but the darn test didn't catch it.... I'm hypermobile and but not hypermobile enough to be hEDS, I'm thinking it's classical actually. Tips on getting hips and joints in general back in place when they are stuck? Suggestions for those who have need organization help? (Your room seems so put together now that you've cleaned it!) (Side note lemon essential oil on a cotton ball takes off adhesive really well just rinse off your skin with water afterwards because it can irritate your skin. It was amazing to find that one out because my skin didn't like to let go of adhesives either.
@CrookedLittleFlower4 жыл бұрын
so sorry about the granulation tissue. i have only ever used GranuLotion . Stings but I don't think as much as Silver Nitrate. and, thank you for the priming trick. I tried it and wow, way quicker and easier. so thanks! and I hope you reamin safe during this pandemic
@debrahardman60884 жыл бұрын
It hurt me so much watching you used the silver nitrate. I’m so sorry you have to go through all of that. Praying for you.
@musicdreamer54964 жыл бұрын
I was clutching my blanket the entire time you did your granulation tissue. I used to hate having that done. I’ve now been tube free for about 5 or 6 months now thouh
@SongbirdAvenger4 жыл бұрын
Yeah, day in the life. Like all the stuff you think is boring - what do you read? Watch? Do for fun? House or room tour? What classes did you take? Obviously just what you feel comfortable with, but outside of medical stuff, we don't know much.
@heidyroberts50512 жыл бұрын
These are amazing ! What do you want to be when you grow up (what are you taking in college?) :)
@rebeccafanning72914 жыл бұрын
Thanks for this I am just starting the battle with gastroporesis, actually been longer but they just figured out I have a paralysed stomach 2years ago. I know I probably will end up with a feeding tube and your video was really helpful.
@TheArmybrat124 жыл бұрын
Rebecca Fanning I was diagnosed with Gastroparesis in 2017. It’s definitely rough
@shakilshaikh75793 жыл бұрын
Can u try coconut water in the morning and ginger mint juice in a day and fast
@emeraldsystem3444 жыл бұрын
Thanks you so much for giving us more videos than usual, with what's going on we're all bored,so we can be bored together:)
@TreeLynnT4 жыл бұрын
Live stream!! We would love that!!
@HamdySaad204 жыл бұрын
Stay strong baby ❤❤
@weral66244 жыл бұрын
A house tour would be nice and if there's any ancillaries to help you with your medical conditions
@thaliaoneal38474 жыл бұрын
U should do hair style video and vlog more makeup video night time routines
@tayloralvord19764 жыл бұрын
I watch the Frey life every single day
@sarahbrassard32854 жыл бұрын
A video on some of your favorite things would be cool
@sonoraparrish55254 жыл бұрын
Make a video about all the surgeries you’ve had!
@Itsme-hc8os4 жыл бұрын
Time flies. Now your 19. I feel like you just got 18.
@mckinleyw.32624 жыл бұрын
I'm curious about all the equipment you have for joint dislocations, afos, splints stuff like that
@abbyrose12934 жыл бұрын
I just starting drinking Kate farms! I have hyper mobile EDS and struggle digesting most things so currently I drink them! The only good one is chocolate but it’s not bad at all.
@susanmargaretwills64324 жыл бұрын
In Italy when a task is simple we say it's "as easy as drinking a glass of water'... some things we just take for granted
@brookekrabben4 жыл бұрын
My schools cancelled till September at least.😭 but we are doing online classes so that’s good!
@curtisbemis66405 ай бұрын
Wish she still posted on youtbe miss her alot
@allisond.464 жыл бұрын
I vaguely remember a time when you had a bunch of formula that couldn't go through your tube. Now I know where it went.
@chronicallymadison22144 жыл бұрын
Do a updated medical storage video and a daily routine with chronic illness
@hayhayluvsjbandcb4 жыл бұрын
Do an updated day in the life!
@amberyingling8404 жыл бұрын
Do you have trouble with formula spoiling when you add water? My nutritionist warned me against it however I also just got over a blood infection and trying to go with just j and g tubes. It's a struggle, know what you're going through... (My 13th blood infection however this time things got crazy and was intubated for 4 days. So also trying to make the switch from central line hydration to strictly j tube. My GI Dr placed a separate g tube about a month ago which has finally made a difference in my vomiting.) On the struggle bus right now though and probably going to try and get my nurse to start a peripheral iv because I can't keep up... Especially with still recovering from sepsis and fluid pneumonia and trying to avoid going into ER or community right now... My body could not take another thing right now... Prayers you are able to get established on j tube and avoid any exposure to covid!!
@diegowolfe27444 жыл бұрын
You're awesome keep it all up
@arwencrisp82924 жыл бұрын
You are amazing
@mystripedlifetori22804 жыл бұрын
How do you stay so positive I am recently diagnosed with Ehlers-danlos syndrome and my dislocations and pain and the many other issues really brings me down it is so hard to stay positive is there something you do specifically
@chinchillamdgamer4 жыл бұрын
Try skillshare in the mean time :D also! You can download free audio books from audible if you get them from the link on Ted ED .
@tanakanicekill97443 жыл бұрын
I have a quick question, im gonna start home infusions for pots and I wanna know if all pediatric patients get a portable pump? just wanna ask because I know you get saline infusions too :p
@annaz11054 жыл бұрын
I also love to read but don’t have a lot of time because of school. And I still don’t have time to read but because I’m homeschooled, and I still have to do school🙁
@anikabaddeleyrollingbackwa73414 жыл бұрын
I love school too.
@RH1174 жыл бұрын
I'm somewhat glad that I'm only a carrier of CEDS. Some days I'm sure you want to trade some of it.
@nellydlamini76973 жыл бұрын
Sending hugs your way, you really handling this like a pro. Just discovered your channel looking forward to getting to know you. How long should you keep burning the granulation tissue, for it to disappear (I hope it is not everyday), does it actually go away?
@6Fiona6_P_64 жыл бұрын
I don't have EDS and you have my absolute sympathy when it comes to that darn Silver Nitrate. Two years ago I had to have a vaginal biopsy and to help in the healing process, yes they had to apply Silver Nitrate on the biopsy area. And it hurt for a week or two...... But when it comes to reading, do as much of that while you're young and your eyesight's good. Cause eyes can and do deteriorate with age and you could suffer from a thing called "Floaters " and whilst you can read with them they can be a bother at times none the less.....☮️⚛️🇦🇺
@hennessygarciahg4 жыл бұрын
You’re so funny God bless you
@wacorbetts4 жыл бұрын
What editing software do you use? I'm just trying to dub some camcorder footage into digital format so I don't need anything too fancy.
@anikabaddeleyrollingbackwa73414 жыл бұрын
Will you get a port back?
@kauigirl8084 жыл бұрын
My dad just got a feeding tube and I wish he could get the Kate Farms instead of what the insurance company gives him. 😕