♡ DAY IN MY LIFE: with EDS, Tubes & Catheters! | Amy Lee Fisher ♡

[@TALHA-hr6xf]

As med students, we often get so caught up on the signs/symptoms and treatments that we forget what people with conditions actually go through on a daily basis.

[@jennylin1390]

the fact that you are realizing that shows you have the qualities to become a good doctor, as a doctor sometimes you can't always cure medical conditions, to have sympathy for your patients and try take into account what people go through on a daily basis despite extreme work pressures, in my opinion, is what a good doctor should have

[@lynettespry1919]

Us 888⁸9l

[@West-rn-showvn-ist-chick]

Yup!! That’s why nurses are better doctors.. They see more have better bedside care and usually know much more than the “doctors”

[@suhkruorav]

@@West-rn-showvn-ist-chick "doctors" in quotation marks, really...? also one isn't better than the other, they literally have different purposes and tasks, no need to be so condescending and unfair.

[@erikalangbein4586]

@@West-rn-showvn-ist-chick that is quite unfair. Both are definitely necessary. I never had an actual relationship with a doctor except for one. The nurses are around you all the time so you get to be friends with some of them and not the doctors. But doctors are grouped into so many different categories, so they are mostly only able to take care of a single system. They aren't ment to spend time with you. They only know about their specialty (except family medicine).

[@blindlovetaurus]

From a nurse perspective I just think your so badass and strong. Not only to do so much care for yourself but to share with the world. So much respect for you ❤️

[@icy8042]

*you're

[@mllee2008]

@@icy8042 Feel better? Lol

[@sharkfinz6]

comment wins the internet!!!!!!

[@sharkfinz6]

@@icy8042 insufferable jackass

[@juliameade5297]

yes! I'm a nursing student and it's so nice seeing this. I love that she's independent and is able to do all of these skills for herself. Her quality of life must be so much better not having to rely on a nurse to come in.

[@gothafloxacin]

I hope you're resting peacefully Amy. You were so loved and still are as well as missed loads.

[@Lexi.x.jingles]

Did she pass ?

[@gothafloxacin]

@@Lexi.x.jingles unfortunately yes

[@themelster]

why did she have to go?

[@NobodyUndefined]

Oh my god I was just wondering why all my recommended videos for her are from 2+ years ago... That's so horrible that she passed

[@neomatrix6115]

Her passing hasn't diminished her spirit in any way. She is still shining as bright as ever, only now, she is no longer in pain. God bless her and everyone needing to use tube feeding to survive. You are all Gladiators and Gladiatrices!

[@rainbowkitty8985]

Okay so I don’t know how I got to your videos but wow girl... my respect to you. I am a nurse, so everything that you do medically for yourself I do for my patients at the hospital. But seeing it from the patient’s perspective is very different. Not only you got your stuff down but your management of the diagnoses is impressive. You are the best nurse you can have. I admire your courage to share your daily routines with a chronic illness. ☺️💕

[@dianaasyiqeen77]

....and she looks good at all time! I cant imagine how ridiculous I look when I feel quite disabled. Even with mild fever! And during my postnatal of course! ugly fugly lol. Respect her a lotttt.

[@rajeshmulay900]

Hello my resp.dear...i am from India, searching good friendship..i shall be glad if you share with me...pls.drop me msg...really awaiting for u...bye !!!!

[@MuhammadImran-ln4fz]

I love u i like you really i get you 😍😍👫💑❤❤ l Am Single 🌷🌷

[@esecallum]

EDS may or may not cause your malabsorbtion issues, but vitamin D can play a very very large role in EDS pain, especially for folks that are hypermobile. Here's what medline.gov says about low vitamin D: "Vitamin D deficiency can lead to a loss of bone density, which can contribute to osteoporosis and fractures. GOOGLE vitaminDwiki

[@gwilson420]

Don't stress about the bra dear they look lovely its not a thing anyone should complain about hardly anyone uses them your girls look smashing, just smashing don't feel imbarraseed there gorgeous an really look beautiful you should never feel that You need to explain anything theres nothing wrong with showing what looks to be an amazing pair of breasts. There lovely and I for 1 appreciated you as you are . And to be honest I enjoyed it more just natural it wouldn't of looked normal it they were holstered in a bra. You go thru more than I go thru disabled. I'm impressed. The hardest part is watchi ng the dislocation the 2nd the routine you go thru the best part watching your girls natural as they are in a very flattering top... you are a tough cookie me lady

[@Priya-yj9od]

when she popped her hip back in "I don't know if you guys heard that" GIRL YES WE DID 😂

[@marilumendoza7038]

I miss her videos. I still watch them regularly. I know she is in peace, but I like to hear her voice every now and then

[@JustMe1u2]

I am a nurse, and I never seen a patient so positive and so motivated to take care of themselves as you., you are truly amazing, and I really admire you. thank you for sharing your story.

[@BoopSnoot]

Also you have an amazing butt. 26:45

[@sofial2232]

I graduate next month as a nurse and I honestly cannot tell you how much your videos helped me understand the daily lives of the people I take care of. We, as healthcare providers only see our patients that have chronic illness for short periods of time (usually). You are such an awesome young lady and help so many others feel normal

[@brianr0]

Wow, this brings back a lot of memories for me. My wife died eight years ago from an aggressive form of myelitis. Our daily routine involved lots of the same stuff, feeding tube, central line, etc on top of total paralysis and a newborn. I did the best I could and learned a lot, and now I'm going back to college to get a nursing degree. Stay strong, live your best life!

[@mollyoly]

you’re so strong :)

[@Pooks55]

Welp R.I.P to your wife shes in a better place😔🖤😢😓🥺

[@chronicinokla]

Rest in peace to your wife. Sorry for your loss. Rest in peace to sweet Amy as well. April 1,2021 she passed.

[@edgbfksc3349]

I’m sorry man no one deserves that to happen and Im sure you tried your best to make her comfortable and now you got to move forward it’s hard to get back up when you get knocked on the fucking canvas but all you can do is get back up and fight

[@michelelemieux-gh5zv]

Bravo Briano and Amy. You are inspirational. Keep up your precise care. Much ❤ 💙 💜

[@tpabst8632]

As an in home nurse, I can’t tell you how amazing you are and i wish more of my clients fight as hard as you do. You are sooo inspirational. ❤️

[@amyleefisher52]

this means a lot to me! thank you so much! ❤️❤️

[@MsNeal2023]

You're a freaking rockstar. I am a nurse and i don't even think i am strong enough to be this amazing while going through all of this. Bless you beauty!

[@slyfor2]

Dude I'm a Surgical ICU nurse and all I've gotta say is goddamn you are one tough cookie. Your daily care routine is usually what I do for 3-4 patients across a work week of 4 days x12hour shift. The fact that you just nonchalantly popped your hip back in and didnt even flinch says a lot about how tough you are. EDS is one of the toughest chronic conditions out there and I hope every day in your life goes as smoothly as this one. Keep hangin tough dude, you're an inspiration to someone who thought he's seen it all in an ICU.

[@norajung4513]

I am absolutely amazed at what you go through on a daily basis. Makes it hard to believe you have any time for anything else. I couldn't imagine how much pain you are in when your joints dislocate. I am having issues with my s1j in my back and about to go mad from the pain. You are a warrior. Take care and take it easy.

[@als2480]

Ive been dealing with chronic pain for 5y. It's something you just get use to. I just recently got muscle relaxers for my back spasms (I'm 20 and people refused to believe something was wrong because of my age). My knees have been bad for a few weeks as well. It takes me 1-3hrs to adjust in the mornings, but as I said, you get used to it.

[@norajung4513]

So sorry you have to bo through that. I don't think drs realize that no matter what age you are, you can have chronic pain. Hopefully you can get the relief and help you need.

[@misshissable]

I was thinking the same thing. It's a lot of work.

[@AstoriaHeard]

@chronicallybeautiful Have you been tested for Lyme Disease? ☺️💓

[@MissJessyeNorman]

Chronically Beautiful What does you pain feel like? And how did it start? Was there an initial trauma, and then instead of getting better, it got worse?

[@madz1100]

Amy's videos are appearing on my feed regularly and each time they do a new wave of sadness hits me. Such a beautiful soul gone far too soon. ❤️

[@curtisbemis6640]

Fact I miss Amy alot Noone else wants to step in her place so I am going to start a channel , my issues are different but I'm going to bring awareness , to eds, c.f , as I have gp, pots , type 1 or c.f related diabetes . heart disease and vascular eds . Our lives are similar but not. She just had a few different illness. Either way it's about others . God be with her , I'm doing it for her.

[@lisamessenger3713]

She died?

[@Oyxopolis]

No idea why KZbin recommended this, but I was fascinated and goddamn, there is no end to the respect I have for your patience.

[@katiej9006]

I think sometimes the internet or youtubers unintentionally glamourise chronic illness, having such a positive attitude and all. I love that this DITL video showed just how sick you feel and just how much goes into surviving daily. It must be exhausting and frustrating at times. Great video. Very educational. Bless.

[@LostInStydia]

For alot of people positivity is what gets them through it all

[@skino1]

I suffer from chronic illness and I'm disabled. I watch these your of videos and often feel inadequate because I generally look like hell, I'm breathless, moaning, vomiting etc. And other people seem to cope so much better. So I know what you mean. She definitely feels more relatable though.

[@randommess6667]

@@LostInStydia not sure how to be positive about feeling ill all the time, it just is depressing me

[@chineeandvashee]

My hips are hurting just imagining her experiencing dislocations. Watching this for the 2nd time cause I kinda miss her personality, reminds me that we all have to stay strong no matter what we go through

[@lucretialee3691]

As someone who's now spent a 3rd of my life bed-bound due to EDS (I'm 44), I have to say you're coping very well with everything and I hope things stay good for you. :)

[@BlayzMonet]

Just curious because I don’t know really anything about the condition, but is the being bed bound like something that always happens eventually or is it a special kind? 🥰 Stay beautiful

[@odin4306]

Myss Mone’t Not sure what you mean by special kind.... but of us are bed bound at some point, depends how bad it is. i currently am not able to do much. i'm not bed bound but i've been house bound for a year now

[@BlayzMonet]

V.C. Lewis I meant like a variation of EDS because I know there are different types and they all can affect each person differently. I guess I should’ve said Do all of those with EDS eventually end up bed bound?

[@erikalangbein4586]

@@BlayzMonet not necessarily. People are differently affected. Severity is also different in everyone. I personally go through flare ups with different comorbid illnesses that temporarily leave me bed bound.

[@odderotter8950]

You make me feel like such a wuss for even complaining about my little aches and pains . GOD bless you . You are a hero in my eyes .

[@emilynightingale7758]

not gonna lie, those finger braces are really pretty, they look like rings.

[@srishhtea._]

i really thought they were rings

[@billiejoe2791]

They are rings, ring splints x

[@emilynightingale7758]

@@billiejoe2791 yes but they function as braces/splints, they only look like rings but that's not their main purpose imo.

[@billiejoe2791]

@@emilynightingale7758 yes but they look like rings because they are rings 🤣

[@carlieverhagen4908]

My mom has silver splints for her arthritis and I hate to sound superficial but I think they're so pretty! And they help her so it's a win-win. :)

[@rkaur6166]

This was so exciting to watch. As a medical student I always see the doctors POV but never have the opportunity to see exactly what the patient has to go through. It is a lot of commitment on the patients behalf and this was a very good visual to show the steps. But most importantly, it was really cool too see you not just as a patient but a person with a life, committed to do your best to make life as easy as you can. I will definitely bare you in mind in my career, so thank you sincerely for teaching me something no medical school could ever do! Love, Rav x

[@GingerKiwiDev]

Hi Ray, I hope you’re doing well (or have finished) med school. Something to keep in mind with us “zebras” (EDS) is that we age slowly on the outside because we tend to wrinkle less … but age quicker on the inside especially our joints. Also, look up the medical journals on redheads and pain and anesthesia. As a redhead who finally has an EDS clinical diagnosis, and who has EDS related dysautonomias including syncope triggered by blood draws (last time I had a blood test I stopped breathing) how I’ve been treated by many doctors has caused ptsd. Yes, I can feel it (redheads need 125% up to 200% of anesthesia and we have a different ratio of non opioid to opioid pain receptors). No it’s not all in my head. My mom is in her 80s and just got her EDS diagnosis. She can still touch her thumbs to her wrists.

[@Smith.S.sStocHasticSs]

😳 Jesus christ this is eye opening. How they not teach u that patients are people?? Seems like an extremely important part of being any health care provider to be thinking about their life when they leave. It was somewhat traumatizing learning how many if not most Healthcare workers are there for the salary and their more interested in their social life at work and getting back to their desk and where they're going for lunch. Helping people is like an irritating nuisance that they really didn't think about when they signed up for it. There was soooo much help that I needed that shouldn't have been neglected like 3 people asking me the same questions then going to get someone else who wasn't briefed on my situation and then realize that this isn't their area of whatever and it takes waaay too much to finally get to the right person that I requested to see and was referred to at the start. Haven't you ever been a patient before?? Or just not for this level ? It helps that she's so young and stylish and pretty and charismatic. It makes it real and like ohh this doesn't just happen 2 other ppl it's.... yeah... wow. Thank you for sharing! 🙏

[@daniellerom4529]

You should call him "Dan" for danlos. Dan the IV pole. And then when he beeps you can say "Damnit Dan!"

[@amyleefisher52]

Omg 😂❤️❤️

[@Mary-op8hi]

I don't know why but I really love this

[@katieismobile8898]

Perfect!

[@tiffytoo]

Me too how cool. Shut up Dan bahaha 😂😂 cute ♥️

[@bonkers5416]

That's funny. Perfect name.😁

[@emmagaie]

It still blows my mind that some people think you're faking all of this, you mentioned it one day and it has stuck with me every time I watch your videos! Insane what you go through every single day

[@MsYolandalee1991]

Gemma people are ignorant!

[@BariAdams]

It blows my mind that people throw acid on women regularly in some places, but it happens. The fact that you cannot fathom something isn't a good reason to decide it doesn't exist.

[@Wayne1359]

Amy I had chemo therapy a little over a year ago and thought that was the worst but seeing your daily routine has changed my perspective. You are a brave and upbeat young woman with great fortitude. I paused your video to look up EDS and familiarize with it . Thank you for the learning experience and feel no shame in discussing the whys just for you to have another more pleasant day.I hope someday (sooner the better) a cure or treatment is found for those like you who have this. I am greatful for every day since my diagnosis and treatment.

[@avthateck]

So this is what it’s like to drive your body on Manual. All jokes aside I am literally mind blown. Like I can’t even begin to Imagine.

[@avthateck]

Husaberg R lmao yoooooo you’re the real MVP! I had no idea!!

[@katiehoran82]

This is hilarious honestly... That’s what I’m gonna day from now on 😂😂😂 I’m chronically ill with EDS as well as Lyme Disease. So I’m driving my body in manual, but the funny thing is that there is no manual booklet. I have to figure out and write my own. Which is super difficult when no one can tell you what’s wrong with you or what to do about it 😂

[@aaronsharp3858]

@@avthateck I'm just replying too let you know it's now at 568 likes :D

[@fmoa9380]

@@aaronsharp3858 I only see 539 on my end maybe more suppression.

[@skimsully22]

I can’t believe how strong and beautiful you are! Your such a badass throwing your hip back in and then continuing with meds!!!

[@icy8042]

*you're

[@BilaMamaKukunka]

I can't even keep track of my meals, this girl deserves a frickin' medal

[@MsEpicArt]

I am a paramedic and it is so encouraging to see you be so positive and take such great care of yourself. Managing a chronic illness is not something most people understand, thank you for spreading awareness of what it’s like to love yourself through the hard days. You go girl!

[@amandamarie7329]

Girl, YES. Persistent nausea is SO much worse than actually vomitting! I deal with extreme nausea on a daily basis but I rarely ever actually vomit! When it gets bad to the point that any movement, even switching positions in bed makes me nauseated, I just cry that I wish I could just vomit! Ugh!!! Stay strong beautiful girl 💪🏻💕

[@Србомбоница86]

I can relate to that,I never vomited in my life,I literally dont know what ti feels like to vomit,but I do have a gag reflex,still I cant vomit,my throat is SO narrow also...so when I get nauseous from my gastritis,I just want to die lol

[@airmidia7100]

Zofran is my best friend. Just wish they would give me more than a week supply at a time..

[@eldritchm3ow]

Completely different but I deal with what feels like constant nausea from my anxiety and the severe emetophobia (fear of vomiting) makes it 100 times worse for me. But I can't imagine how scary it must be to deal with constant nausea from an actual physical problem. I couldn't handle that at all, with anxiety I know it's caused by my brain but.. you guys are so strong!!

[@Србомбоница86]

@@eldritchm3ow my nausea is real and comes from anxiety. Anxiety does cause physical symptoms(nausea, diarrhea,vomiting) ,this is why it must be treated before it gets out of control

[@eldritchm3ow]

@@Србомбоница86 Ah I'm sorry to hear that, I know how awful it is so I hope you're getting treatment for it now,,

[@nancydrew1882]

Wow! I’ve never seen anyone with so many ailments. To boot, you’re helping yourself and keeping track of your treatments and maintenance processes. I’ve never heard of eds until I stumbled in your video. I’m very amazed and inspired by you. My son has a disability and I’m working on teaching him to be as independent as possible. I don’t mind helping him till the end of time but I realize that being independent does so much for a disabled persons self esteem as well as their navigation of this oftentimes intolerant world.

[@xAithne13]

I think your finger braces are so cute. They look like cute little rings. Stay strong beautiful, you're amazing

[@DoveEnigma13]

Yeah they are really cute. The reason she must wear them sucks, but the splints look pretty cool

[@kerrywood407]

Amy I just want to say even though your doing a day in the life i mostly see your personality shining through more than your chronic illness. I think your an absolute trooper and I wish I had your strength in dealing with my own chronic illnesses. Your a true inspiration and for that I thank you. Sending love and hope you had a good night hun. Xxx

[@Turtletech_]

I was home off work today setting up my game room and was watching random things on my pc here while im getting things done and this video poped up. I dont ever comment on anything i watch....for some reason watching you go through all this daily really made me think on how we take so many things for granted in our daily lives. Not that your a sad case if you know what im trying to say.....just that people in general sometimes can be so weak and unappreciative including myself. Keep up the positivism and courage and keep putting out vids they reach people...im proof...have a blessed ride through your lifes journey....stay strong.

[@locksmithmuggle]

OK, I'm officially done complaining.

[@overgrownkudzu]

Your problems aren't less valid because somebody else has more to deal with.

[@locksmithmuggle]

@Big E Not everyone has a properly functioning body. I am completely healthy and have never had to deal with any of those things. The things I do have to deal with seem petty in comparison

[@mladendenni7062]

@@overgrownkudzu yes but still this is torture, i would prolly end mine

[@Paretozen]

Tell ma bound it, im might evn stop drinking

[@dieselgeezer18]

@Big E her issues are much harder to deal with. And its not because of her fault. Shut up dude and be glad you are healthy

[@gordonwybo898]

If no bra is better for your body then go free. No one should be embarrassed by their body. Can you use a magnesium liquid for your bowels? You would make a hell of an educator at the university!!! Thanks again.

[@BeeeatrizMello]

You go girl! #freetits

[@amyleefisher52]

Never tried magnesium liquid 🤔

[@gordonwybo898]

Amy Lee Fisher magnesium is the same thing they use before a colonoscopy. It’s easier to use than the other flushes that the clinics use. In the US the product I use is “CALM.”

[@alys4570]

I have hyper mobile EDS also and I use magnesium citrate. I am able to swallow soft gel tabs (liquid inside the gel capsule) . They sell it in liquid form but you’d have to talk with your dr as to what dosage to take with the liquid. I take two softgels each day (am & pm ) which contains 250 mg of magnesium citrate (in two caps). 250 mg of magnesium citrate is 60% of a daily recommended dosage. I’m not sure how well magnesium would work with a completely paralyzed gut, but it does work great on my gut that moves extremely slow. It keeps me from doing enemas. My daughter (who also has EDS) lived the first 20 years of her life with terrible stomach trouble and pain. She very rarely could have bowel movements on her own. She started taking magnesium a year ago and now has trained her body to have a bowel movement every other day on her own. It was life-changing for her. None of our doctors ever recommended this therapy. I’m not quite sure why because it does work really well for both of us. We learned this from other zebras.

[@Lucailey]

@@gordonwybo898 Yes! As someone with anxiety disorder any back/jaw and joint stiffness CALM is a great product! I use it at night - mixed with my sleeping meds. It makes the taste much better because of that kind of sprite like product! CALM is so awesome, I thought I was taking a risk buying a bottle of "fizz" for $10 was a lot but now I have to say it is a great product. Good for staying regular, tmj and back issues, and arthritis AND a mood stabilizer. Can't complain spending $10 for all of that!

[@ithinkiwoulddie9196]

I have eds and right now I’m having extreme issues so seeing your videos is comforting. I’ve never met anyone else with eds so it’s interesting watching someone talk about their experiences with the same things I have

[@Hadleyrille_]

She’s gone..

[@mercyfulvickv2810]

Unfortunately she died years ago

[@usagi_t]

@@mercyfulvickv2810 Was EDS the reason for her passing?

[@mercyfulvickv2810]

@@usagi_t yes complications related to it

[@j.fraley6862]

Oh my god! I was a Firefighter/EMT for 10 years and I have never gone on any medical calls for anyone with EDS. I've never seen how this affects people until now. I am so very sorry you have to go through the treatment or for that matter the issues you have. You and Hannah Espenschied are incredibly strong ladies for what you do, and I am so glad you shared your experience with the Everyone who watches this video.

[@waikikimum3521]

So much respect for you Amy. Having a chronic illness is a full time job just to keep yourself well. I am loving watching your videos and learning so much. 💗💗

[@Aleeha_Ahmed66]

R.i.p Amy such a lovely young woman x

[@jeffmaddry4940]

For years I have been dislocating my joints in my sleep and never knew there was a reason, or connection with being double jointed. I just found your channel, and while not a diagnosis, seeing what you experience, I have so many similarities that I never thought of as being connected. I appreciate your openness

[@brandi2hip103]

I have Ulcerative Colitis and for the past month in a half I have dealt with nausea. You explained it best when you said "it feels like you soul leaves your body." I agree with that statement 100%. BTW I love watching your videos.

[@emilythomas7340]

I have UC too! Not meaning this as a self promotion but I post my journey on Instagram @chronically_emily_ if you ever want to speak to someone going through the same thing you can dm me! x

[@brandi2hip103]

Emily Thomas thank you ☺️

[@brandi2hip103]

Echo 9970 thank you ☺️

[@brandi2hip103]

Emily Thomas just followed you my ig is fyew_doe

[@Србомбоница86]

nausea is THE WORST feeling for me,I delt with pain,but there is something about nausea thats horrifing...I have some mild stomach issues,like gastritis and nausea is quite common with it

[@rhaziel69]

I'm convinced that the strongest people in the world are those who live with serious medical conditions. I've been there for short periods of my life, and it was the toughest thing I've ever had to do. Amy, you are most definitely tough as nails. Much respect.

[@vampobsessed]

Paul Copeland I 100% agree with this comment. They put a lot of us to shame.

[@Christinesobsevations]

I’m so thankful to have these videos to look back on . Miss you Amy ❤❤❤

[@Christinesobsevations]

With the bra they hurt me …. Can’t stand them !

[@breetomlinson5904]

I don't know you but I feel proud of you. This absolutely consumes your entire life and whoever you end up marrying is going to be a lucky person because you're self sufficient and strong. You need nothing of this world and no one to help you. You're awesome.

[@jcook2574]

I would never wear a bra if my boobs looked as good as yours!!! No shame in your game girl! You are beautiful and I enjoy your channel so much!

[@alyssafatony29]

J Cook she’s so amazing and I very much enjoy watching her channel.

[@markkram7346]

you enjoy her suffering

[@nickfranco3375]

J Cook thirsty much 🤣 pathetic ass

[@nickfranco3375]

Filiz Booday 🤣 lesbian tendencies

[@alyssafatony29]

mark kram no I don’t, I just simply enjoy watching her channel cause she’s inspiring to me

[@alicornalley211]

Apologise for the year late comment but thank you for educating everyone. I have EDS and POTS, I'm not nearly as bad but seeing how strong you are with having a worse case of EDS than me is very inspiring to me. My knees and ankles dislocate so often and nobody understands how I just fix it without being grossed out, it's been isolating. I love how you're educating and how strong you are. I hope everything's good

[@mercyfulvickv2810]

She died years ago

[@SuperCreeperHater]

I have noticed and love that you are doing what makes you the most comfortable and normalizing not wearing a bra in your videos! You just make it a normal fact of life and you don't apologize for it and I love that.

[@amyleefisher52]

TheOneandOnly thank you! Because it took a lot for me to do that 😅❤️❤️

[@Jessi-44]

And that my friends, is how I realised that I am a huge wuss in life.

[@ripvanwinkle420snoopdogg2]

Cheer up...find your level love.

[@oriaaane]

I think it's really important for people to get that perspective and realize that, so good on you

[@lyt6732]

this is the first video I saw of Amy’s.. been a good year binging all your old vids.. I caught up right before you passed. ): in shock... rip sweetie

[@nikkirenee5696]

110% agree with the vomiting vs nausea thing. I’ve told people that before and they look at me like I’m crazy? But why would I wanna suffer through nausea when I could just vomit and get on with it? Also glad I’m not the only one that dislocated a shoulder or two just brushing my hair 😂

[@amyleefisher52]

Porcelain Beauty haha yes! Brushing hair is the worst! 😅😱

[@mckennass]

I agree with y’all, I’ve had gastroesophogeal reflux disease since I was out of the womb and feeling like I’m going to throw up is so much worse than actually doing it. Normally I’ll just force myself, which probably isn’t a good thing, but at least I feel better?

[@Mary-op8hi]

I was sitting up in bed nodding so much that I hurt my neck. If I could throw up once a day without nausea it would be so easy to deal with and probably would barely be debilitating; just go puke and you're done! Instead of spending hours lying around feeling like you're dying from nausea

[@Mary-op8hi]

@@mckennass I do it to. From my understanding the only "bad" parts of making yourself vomit to get rid of the nausea is you could hurt your teeth and dehydrate yourself depending on how often you're doing it, But every now and then I'm sure is fine. Although obviously I am so not a doctor just going off of what I've been told my different professionals over the years.

[@jarred333Boss]

Era

[@lindajedeon9441]

You will be missed so dearly 😢😢😢 our heart is so broken I hope Tom and the family are ok you are in our prayers 😢🙏

[@DefWun]

Man,I seriously admire how positive she is while going through all of this. I wish I had half of the positive energy that she does.

[@shalinkeir8989]

When I had a bad reaction to surgery, I had to go through a tube and a lot of similar meds and etc, and the nausea was horrendous. I can’t imagine having to do what you do, you’re an absolute unit ❤️

[@THEREisAplaceFORus8]

Oh my gosh, you are freaking amazing. I can't fathom doing what you do daily and with the organization you have. You are truly an inspiration, Amy!

[@annasartor5065]

The cool part is, your finger splints look like cool rings!

[@SaRah-21532]

I know you purposely didn't film things multiple times, but I think it would actually be pretty interesting for EDS awareness month or something if you filmed all of it to show people how much you actually have to do in a day.

[@grimmzarakiffxiv6350]

Watched to the end honestly your a a true spartan I can’t imagine myself going through this everyday

[@Nexavious]

Seeing things like this make me understand just how weak of a person I really am.

[@Jomoplays]

Mk

[@NaeKid]

I'm a guy with EDS as well. It's not to the same extent as what you go thru daily, I can function fairly normal. Joints pop in and out (usually painless), I bend in ways most couldn't dream of, walking in the morning can be a chore if I don't do my stretches, and, I have some stomach/intestine issues that are gross to talk about. Yup, that's me upside down in the picture

[@heysselg.3993]

One of the most brave and independent young woman I had seen in my life. Thanks for sharing sweetheart, you are amazing. I am healthy and I don’t wear bra, c’la vie and I love it! ✊🏻 x

[@michellemuskeyn329]

Heyssel K. I am also a part of the “Free Titties Club” lol 😂

[@xmrpaintx1]

After watching just the first 5 minutes of this and having no idea about EDS, I find your strength inspiring... thank you for sharing your struggle.

[@thedolyn9954]

Yeah, I'm another random guy squirreling through youtube at 3 am and I know you don't need anyone else to say this but hold your head so high! Your absolutley slaying it. EDS runs hard through the women of my family and I see day to day the struggles. With the little things, a dislodged tube. A fall or a trip. And the tremendous pain, my heart truly goes out to you, and let me repeat. YOU ARE SLAYINGGG ITT!! KEEP ITT UPP

[@mangosoda7117]

Omg! Yay!! This is the first time I have been able to relate to someone before and I am so grateful that you have given that to me... It's also the first time I have met someone with some of the same conditions I have.... I can't tell you how much I appreciate this, but THANK YOU from the bottom of my heart...

[@meganhanson6790]

So open and full of life, more than I feel most of the time with my couple mental illnesses. That’s not to dehumanize her or the chronically ill as “inspiration” content - but personally going through a hard time right now and it helps to see her show there are always ways to keep going

[@emilycontant890]

Amy you are so strong!! Seeing what you go through every day makes me realize that I have it truly easy! Your so strong. Like your hip came out and you pushed it back in without a fear! You go girl!! Thank you so much for sharing! Love you girl ❤️❤️

[@cricket531]

Yep there are people who pack a punch with just a little blow She was one of them I like to pay tribute to those souls It keeps my spirit lifted I recently discovered her journey, only to learn she passed on That young lady lifted me up and I didn't even know her She was a true champion of heart and unrelenting spirit I hope when she got to her paradise, God made her whole and brand new And I thank you Amy, your light will shine because you touched so many hearts Smile down on this old world It makes it a better place

[@MrElrojo1]

I know you probably don't want people to feel sorry for you but you are actually making me cry and wishing that I could help you. You are a beautiful young lady, keep your chin up and your spirits high and just live life on your terms. Much love.

[@haydenespen]

Hi Amy, my name is Hannah and I have Crohn’s disease and EDS, I can’t eat food like you and I need a feeding tube as well, I’m only 12 years old so I have to stay at the hospital to do this, I am a mess from all of this, I had an emergency surgery where I got part of my intestines flipped and got the intestine on the out side of my stomach so I need a bag for it and I will have it for the rest of my life, I want to die sometimes, my stomach is basically paralyzed is what I describe it as but I’m so sorry you have to go through this and I understand, I take so many meds and I am in the hospital constantly because sometimes my bones dislocate in the middle of school so I am now homeschooled and it is so hard but I’m getting through it. I have 4 ng tubes down my throat and it hurts like hell but I’m ok. It’s helping but I am so so sick all the time. I was in a mental hospital for multiple weeks from self harm and trying to kill myself, im getting a little better but yeh.Bye Amy I love you ❤️

[@JJ-yf9oz]

Thank you for not giving up, stay strong❤

[@oliviaduggan7577]

Awww!! Stay strong! 😇🥰

[@haydenespen]

Aww thank you guys so much

[@nnnnn1610]

Bless your heart. I just want to say I think you're doing really well, esp at such a young age. It's ok to not feel strong sometimes, it can get you down when your body stops you from doing what you want, it's frustrating as it's your body right, it should do what you want it to do(!)... Just be kind on yourself - All I can say is be proud of how you're handling it, remember the good days and hold on to those, so when there's bad ones you can remind yourself it won't always be so bad. Breaks my heart to read you're that low sometimes, I'm older than you and if my child felt this way it would painful to hear - make sure you talk (to parents esp) on those low days, whilst they aren't walking in your shoes, they'll give you a big cuddle, show you how loved you are and help support you through X. Both you and the young lady in this video are amazing, remember that x

[@haydenespen]

Nic aww this is so sweet I am legit crying

[@Rose-qh4qh]

I just love watching you. 💯 As a trauma nurse. I'm so inspired by you. Living with a chronic illness such as EDS is not at all easy breezy to handle, but your a trooper! I'm impressed by your abilities to maintain your daily routine and proper techniques to execute each procedure...👌 You are more knowledgeable than a lot of nurses and doctors i know! You keep up the good work. So proud of you my dear! Bravo👏 🙌🙏

[@sirmarek78]

You are a very strong and brave girl. and you are a very positive in this very bad situation. I wish you nothing than the best in you life and I hope that soon or someday you will full recover form this sickness.

[@Bluecashew1]

Sweet buttered biscuits I can't even skip around this video without being bombarded with more problems, pain, and difficulty than I've had in my whole life. I'd give you words of encouragement but the peasants don't need to encourage the king. You've got some real drive in you. I'm just blown away at your ability to cope with this issue. Wow.

[@ThePollydoodles]

Ivy the IV Pole :) ha I have CF and in hospital at the mo .. love a good bit of chronic illness video to do my nebulisers to 🤣 xx Polly

[@Ivii.Naomiii]

Ivy lee is my choice

[@ronwyn417]

I have CF too!

[@megansanchez2942]

Girl you are amazing! My mom is on TPN and your videos helped introduce us to TPN before she got put on. Keep being strong and thank you for all the videos! Again you are beautiful, strong, and wonderful!

[@MsTRAVISHILL]

I just wanted to tell you I really admire your strength to keep moving forward and have the will to want to live. You are very beautiful, you are truly an angel.

[@NickMasseyRideon]

13:56 I think the finger splits look cool, like jewelry

[@tracyvercelli892]

Same

[@InnaVitamina777]

Thank you for showing us what your daily life consists off...you are a very strong and inspirational women.. I used to get nauseous from meds 24/7 too and a nurse once told me to take an alcohol prep pad (or rubbing alcohol on cotton) and take a whiff when the nausea begins...idk why it works but that *hack* saved my life

[@tomkitchen2764]

What a terrific person, Amy deserves everything good in life

[@gillyana]

So incredibly sad that we will never get to watch another day in the life or just seeing you on camera. SWEET DREAMS BEAUTIFUL X

[@meganallcock4955]

Amy sadly passed away on April first

[@gillyana]

@@meganallcock4955 yeah I am aware of that so incredibly sad. I had contact with her a couple of weeks before talking about trauma from the ICU as I have been ventilated and in ICU many many time due to my type 2 respiratory failure x

[@GrahamsYouTube]

This video popped up on my feed and not something I would search for but it has made me very aware that I should not complain about any of the irrelevant issues in my daily life. This girl is is an inspiration to watch and listen to, super smart and should the kind of person that young girls should be inspired by, a strong independent role model.

[@musicisfun273]

this is amazing you are such a brave and courageous person. You haven’t turned bitter on the world from your disease but have instead become a positive day of sunshine. Bravo 💗💗💗

[@jessicacacax5336]

You honestly have so much to remember on the daily! Not just meds etc but remembering to be sterile and remembering which meds you need I guess you’ve gotten use to what you need and it becomes routine and normal for you. On top of that dislocations and pain aswell to deal with. You’re amazing and a great inspiration Amy lots of love to you ❤️ from the uk xxxx

[@howardwayne5982]

No idea why KZbin recommended this video, but I watched the entire thing. And I screamed the whole time. I learned a lot about myself tonight as I slowly rocked back and forth whimpering as you showed a day in your life. You're such a beast. Much respect.

[@hatstephla1769]

The fuzzy sweater she’s wearing looks so cute and comfortable. I want it

[@m1n0l]

I watch all your videos and I know this one is older but you make me feel like what I’m going through isn’t as bad I have sickle cell so I deal with daily infusions and pain medication and nausea all the time in to see someone who is going through much worse but still stays so strong really makes my day 🥰💕

[@BlueMiaou]

Your tiny "rant" about bras halfway through the videos makes me want to stop wearing bras lmfao Honestly, it's amazing that you do all that by yourself. I don't have the motivation to take care of myself properly and that's why I always feel discomfort. You are amazing and I hope the best for you.

[@kiokothecuddlyquailspud1389]

I already can't wear them cause of of chronic osteochondritis so basically the cartilage between my ribs become inflamed and hate me. Feels like I've got a vice squeezing me 24/7 and I have to breathe shallow breathes. I can't imagine having to have all the other issues this sweet young lady has to deal with on top of rib pain.

[@jazzombi9680]

Yeah no I haven’t worn a bra in like half a year cause their way too hard to put on. The kind that clip in the front seem a little better though. I’ve been thinking about getting them

[@ForgottenLore]

It must be very hard making videos with OCD, I hope you don't feel as if we are judging you. Most of us are here because we want to learn more and also because we admire you. :)

[@amosbanjocaretakers3598]

My wife died from EDS at the age of 37 years old her brother died at 21 years old and her mother died at 24 years old, we had two kids a daughter and a son and there both got EDS it’s a terrible thing to see my love ones die and going to die, my daughter and son have had numerous operations to keep them alive and is always a emergency and no notice until I get a phone call and a lengthy stay in ICU, but they are alive now so I’m going to treat that as a lottery win every day there still here, Cheers Amos

[@robincooper3]

Sorry for your tragic losses. Is it the vascular form that your family had?

[@amosbanjocaretakers3598]

@@robincooper3 yes, my wife died from Aortic aneurysm, while i was sitting on her bed cuddling her and trying to stop her from punching herself from the pain,

[@robincooper3]

@@amosbanjocaretakers3598 I cannot imagine your grief.. my condolences

[@amosbanjocaretakers3598]

@@robincooper3 life goes on, i look at it like my two kids are alive and while they are just treat everyday as like winning lotto, i do get upset knowing that my granddaughter has it and we found out after tests at the age of 6 years old, that beats me up at times when we catch up and she idealised me.

[@GonzaloUSA1]

Bless your heart and your attitude, thank you for showing fear a brave face. You inspire, don't stop

[@DSx9]

This video makes me feel like the biggest whiner ever... I need to start appreciating what I have...

[@brittanybrandywine6629]

My daughter has a g tube. She's only 11 Months old so I can't ask her about it but I have some questions if you don't mind me asking! 😁 1. Why does it bleed a little overnight? 2. Is laying on your stomach uncomfortable? 3. How do you feel about your tube? (Appreciative, embarrassed, etc) Thanks ♥️

[@liv4love-22d8]

Brittany Brandywine I'm not her but the only one I can guess is it bleeds because they had to make a hole for her feed tube. But again I'm only guessing

[@brittanybrandywine6629]

@@liv4love-22d8 yes I know but I was wondering why it only bleeds overnight. I'm guessing it gets pulled or rubbed on too much which doesn't sound comfortable😞

[@liv4love-22d8]

Brittany Brandywine yes that's what I meant to say sorry.

[@brittanybrandywine6629]

@@liv4love-22d8 no need to apologize 😊❤️

[@kellyd.pinon-dill6707]

I have a tube for 10 mons now an mine bleeds only at night if i lay on it or if it gets cought on my clothes an yes at first it does hurt to lay on it an i have a kimberly clark, which is a 2ft tube that i make belts for to hold it around my waist to make it comfortable for me. Im on an 18hr drip, i have Ehlers Danlos an Gastroprasis an i have seizures an i have a damaged vagas nerve making me have muscle spazum problem with my throat so i cant eat, i cant swollow........Hope this helps!

[@pjgr1231]

you should name your pole Pole McCartney!

[@deborahlamartiniere6349]

LOL that's funny....

[@ranamartin3771]

My sister has EDS too. It's so hard to watch her go through it. She like you, is a very strong and brave woman!

[@user-ow2zy5iw1c]

Hope your sister is doing good, I miss Amy so much such was such a warrior

[@shawnwacek6791]

She kind of keeps me from going insane when I get sick and have to go and do a bunch of stuff at doctors offices just had good news from the doctor hope you taking more meds so happy

[@CaptainPhantom93]

Not sure why you got recommended honestly. I dont really watch videos like this, but I enjoyed seeing what a strong person you are.

[@olivedog1880]

She had the best attitude towards life, with all of her different illnesses

[@twidntrue848]

Amy, you are so amazing! So many details you have to handle every day to keep as healthy as possible and you are able to smile and stay positive and have a life! Thank you for sharing so much with us.

[@mandyschaan8776]

I love these videos, it's like seeing my life in someone else and it makes me feel less alone!

[@virginiaviola5097]

I sooo agree with the feeling sick! When I was little I used to get gastro A LOT, and I perfected the art whereby if you lie very, very still, don’t move and don’t breathe ( well, hardly), you can stop the nausea, and as long as you don’t move even a tiny bit, won’t throw up. I’m now in my late fifties, and I still do this. My meds can sometimes make me feel very, very sick, nausea really is the worst.

[@DonnyMusto]

I know that feeling of nausea. I’ve been fighting cancer for over 6 years. Ondansetron is a godsend especially after chemo.

[@dawn7984]

Donny Musto omg I agree ondansetron is a absolute godsend I don’t know how I would live with out it

[@zombieCupcake9183]

Thank you so much for sharing! I loved watching this, as a nurse it taught me so much. Stay strong beautiful!

[@Frogger790]

Thank you for sharing your experience! In the past, I have studied in medical textbooks about EDS but it didn’t sink in till I watched your video! 🍀🤞 your very optimistic & pleasant! I wish you lots of luck!

[@aliciacarlson4690]

The finger splints look like fashion they look really good