My heart hurts so bad after the news of Amy passing away.. can't believe she's not in this world anymore. And now this was recommended to me and I want to cry. I hope she is in a better place, free and running. I'll miss you 💗
I found out she passed why I was at work yesterday. I almost cried. Then this morning this was recommended to me as well and I was like, why does TH-cam hate.
@@Schrodingers_Kat no. Don't apologize. Honest mistake. I was trying to find a way to explain it and couldn't. I wasn't trying to sound like a dick. I apologize.
Having this recommended after you find out that this beautiful soul has passed on crying is a understatement hurts my heart God bless all her loved ones and family. Friends this is a huge loss such an amazing person 🤍🙏🏼🫂🥺
❤️😥❤️😥 I know I can’t even process the emotional stuff anymore I just keep telling myself that she is no longer suffering and she is in a better place 😥😥😥I still can’t believe it tho
@Jim Blogs yes and that is sad it is just that this video is about her and she passed as a very young lady and well known! Lots of people are sad and lots of people are also dealing with other people passing too I’m sure so we also need to except that some people are going to take it more seriously then others! You are right tho just this is about her!💕
All the girl wants is to have a good life with kids and travel, then her last yr of life there's COVID, aka zero traveling.... Gosh, I really hope u're visiting every place u ever wanted to see in the afterlife. RIP Amy.
Oh Amy! I miss you already!!! My heart is breaking of hearing of your passing, I have a daughter your age and my heart breaks for you mother. You are so loved and I will miss you forever.
I wasn’t diagnosed until I was 50. Yes, I’m in pain, yes I have dislocations, and other issues... but they are small compared to this young lady. Rest In Peace.
My heart breaks for her family, Tom, and friends. I cried on and off all day when I found out she passed. She was such a bright beautiful soul. She was so brave and always tried to have such a positive outlook no matter what she was facing. She was a one of a kind. We'll miss you sweet angel. My prayers go out to her loved ones.
You touched the lives of so many Amy. You don't realise how much you contributed to chronic illness education. You will be sorely missed. An angel is now in heaven. Condolences and prayers to your loved ones.
@@sgough83 not Tom hasn't said but I'm sure it was something with her heart. She has been in and out of the hospital since Nov or Dec because she had a massive heart attack. Do you follow her on Instagram?
@@McCreaFamilyHomestead there’s a new video that says she’s had a few blood clots and her heart kept stopping I believe. So it was most likely her heart and the blood clots. I don’t want to assume anything though as I don’t want to upset Tom and the family.
I love the way your finger braces look. They actually look so high fashion, they’re super badass. I would totally wear them if it wasn’t morally wrong to do so (I don’t need them so I don’t want to make them fashion when people need them for serious things).
@Gold Gold exactly. People don't realize if you hype it up and make it popular it actually helps us. If it wasn't for it being a fad being gluten free us celiacs would still have no options and the food would still be nasty
I have followed Amy for years & I’m so upset she’s passed away. I’m glad she’s no longer in any pain. Amy’s legacy will continue for years to come. The number of people the news of her passing has reached is obvious by the comment section of her videos. She’ll continue to help, educate & spread her positive outlook with millions of people to come. I hope you’re resting peacefully & my thoughts & wishes go out to Amy’s friends & family ♥️
I think TH-cam recommended this because I was searching Ehler-Danlos disease because my best friends child has been diagnosed with it and I want to know more to be able to support her more. Thank you so much for this video. Edit: Now reading the comments I've realized that she has unfortunately passed... I'm so sorry for everyone who is feeling her loss
She definitely had alot of suffering in her life and she handled it like a champ.. I pray she is with Jesus, that he is hugging her and telling her how much he loves her.
This video keeps popping up in my recommended and keeps reminding me of her passing. So, so sad about this news. Amy inspired me so much, I'm in nursing school because of her. I owe her a lot and I hope wherever she is now she is at peace 💗💗💗💗
Damn, Amy! I'm a T-7 para with all the complications you could have that go along with it. I was in a motorcycle accident 31years ago this year. I was 35 when I was hit by a hit and run driver who t-boned me when he blew through a stop sign. They never thought I would survive through the night because of the massive trauma. Through the years I have contacted awful diseases and complications from the VA health system. I have bags and tubes for my bodily functions. I jokingly call it "my plumbing". And in the spirit of the video topic, my doctor told me "you're defying the odds"! With all the complications, I'm still here! But despite all that and being paralyzed, I gotta give you credit Amy. You have a better attitude than me despite all the adversity you face. I have a lot of respect for people like yourself and how you deal with your health issues. You are so educated about your health and self sufficient. All the best wishes to you... John
I am southern granny. I was rushed pretty badly y thieves chashing each other. Now 25 years later I am enjoying my grandchildren and being lazy. I find something good because I lived.
@@markotik2 Hey Mark, I wouldn't call what you describe as miniscule! When you have a life altering incident like we both had, it's not like fracturing an arm or leg bone and having it heal up and you move on with your life as it was. You and me were active people and if you were like me, you were a type A personality. I was an adrenaline junky. I crewed and flew a Black Hawk helicopter, was a Paratrooper, motorcyclist, etc. This year is my 32nd year of being paralyzed only in the last two years am I coming to grips with it. I spent 30 years angry and contemplating suicide. But, I had a family to support. A wife, two small children. I just took two years off to get used to being paralyzed then went back to college, learned a trade using computers and went back to work for the military as a civilian. Like you, I have to make enough trips to the VA hospitals that they all know me personally now. Thankfully, they have cleaned up the horrible conditions in the facilities I go to. A little to late. I have to deal with the unsterile conditions they were in 30 years ago. I survived a couple of killer hospital critters, thank God for my strong immune system. But it left me with many complications. Like you. It sucks and I take many meds to keep functioning, like you. I'm 66 and retired now. I wish I had some words of wisdom to give you, but I don't. You will find a way of you want to. If you're strong enough and motivated. Look at Amy. She's so strong. Man, I give her props for being a fighter. Know your limitations and learn to accept them is all I can say. It took me several decades to find that out. Try pushing it from time to time. You might get frustrated. So use what you can. If you can feed yourself and do anything that makes you more independent, do it. You'll feel like you accomplished something. Let me add something. Everyone used to tell me how lucky I was to survive. I always thought my excessive chase for the next adrenaline rush would either bring me satisfaction or kill me. I never thought I would be stuck in the middle like this. So people used to tell me there are others that are worse off than me. But it never made me feel any better knowing someone else was worse off than me. What a dumb thing to say, I used to think. Well, Mark. Best regards and stay safe... John
John Brady Thank for your kind words - it all means a lot. I contracted MRSB in hospital and was so ill - was in for 3 months that time. Yeah it sucks taking so many meds - and I have =to take OxyContin 3 times a day, Pregabs along with the strongest amount of gabapintin allowed in a day - 1200mg - 400 x 3 times a day for really bad nerve damage / /= 24 hour lasting Fentanyl patches are on my arm all the time and I have prefilled morphine syringes I end up needing to inject 3 or 4 times a day. Plus Xanax and Bromazem, Xanax for during the day and Temazepam for night with Ambien for when I have restless nights + when the pain gets unbearable keeping me awake. Also 16 x dihydrocodiene 4 times a day, plus a few other various tablets of unpronounceable names. I’ll admit ?I have a huge opiate addiction but at least ?I don’t have to pay for them currently. I too should have died - ‘I died twice on the table but am glad ?I’m alive but need edjing a carer is shit - I can’t go shopping, nor cook tea, repack up for things when I do Manage to go shopping I can’t reach the shelves. Bad days and good days but believe I’ll be on large amounts of opiates forever and go into withdrawal if I’m even just a few hours without them. I liter7finally came terms with it at the start of this before this crap happened and now I’m in high risk category. Now I just can’t go out at all as my local shops moved an extra mile away and there’s hardly any taxi services to help. Your comments are great my friend- really have cheered me up a little so thanks a lot for that ✌️ Yeah I loved bikes and because I was a Flight Attendant for KLM airlines so could travel round the world every week but in japan I found a special edition, tuned to with mm’s of the legal limits I found a Yamaha eliminator in custom blue yellow with red highlands limited edition unable to buy here so go it sent back and it was my xmas prescient to myself - but toook it out on SMS’s even on quiet roads - was opening it up and leaning down on the windy country roads befor the pissed idiot hit me - then left th scene immediately. Sometimes AI give up but thing well. Im Alive and that’s a blessing. I too was a junky for the extreme - tried wingsuit flying and have BASE jumped about 50 times. Raced bikes and my Nissan GTR round the Nurburgring Nordsliefe a lot of times. I do miss my bikes but it’s annoying more that I won’t get to take my Ariel Atom and my race replica Ducati round the track. I used to do extreme sports like skydiving and racing in fast cars but obviously a II never to theres again. And the illness regarding my stomach needed tubes and bags give me huge anxiety- scared if they leak. Worse in a wheelchair.. But yes that you for sharing this- 35 years is a long time for you. That’s not good.AT ALL. Anyway one more thing - it’s been reading your replies. Gives me hope fir the future.thank so mush.
I really hope that God keeps you here for a long time. Your positive soul is just inspiring and you are way too nice to go early. Life is sadly too fragile, but we will cherish every moment you share with us. 💕
My heart hurts reading my comment back. I can't process this, I wished for a longer time for you here. Hope you are know pain free darling. Sending lots of prayers, love and strength for Tom and her family and friends. ♥
I miss you so much sweet girl. I can't believe you're really gone... I truly cannot wrap my head around it. I just can't. I'm so sad, my heart is broken to pieces. I never thought this would happen, I just didn't. It doesn't seem fair. Amy brought so much positivity, love, light & strength to everyone. She was the brightest light & the world is a bit darker without her here. I'll miss her forever. I wish she wasn't gone, but I hope she's in a much better place & is no longer in any pain or worry. I love her so much. Prayers to Tom & Amy's family. She was so wonderful, a truly beautiful soul! Forever & Always.
It’s beautiful and very sad that we still get to see you. It’s especially good when you are looking so healthy and you’re just chattering away!! Missing all your joy.
I have Elhers Danlos too (but a different type) and PoTS. It's amazing to see you doing so much despite these conditions and it lovely to see you spreading awareness about EDS because nobody ever seems to get it!! ❤️❤️❤️
I totally agree My mental health was affected by my illnesses So much so At 21 I spent 5weeks in a Mental health hospital At 50 I still work through them I for the past 20 years Have also helped others with their Mental health issues Asking for help is hard Yet the biggest step Loving today’s Q&A lovely ❤️
This poor girl. How could someone have so many horrible illnesses? It's just not right. I hope shes no longer in pain and I'm glad she doesn't have to deal with this stuff anymore but she didn't deserve any of it.
What the hell girl, I found your channel two days ago and can't stop viewing. I don't even have any connection to the topic, it's something I've never really thought about before until now and I'm finding it so educational and interesting. Keep it up!! You're super inspiring :)
You are going to be missed so much, sweet girl. I am still in shock that you're gone. I hope Tom or your family can fill us in on what you had planned on telling us later. What happened? God speed, sweetie!!
it feels lik yesterday i found out you passed. ive been in and out of hospital the past 3 years being tube fed for a severe eating disorder that i likely wont recover from. i found your videos and i just really want to thank you for everything. i would always watch your videos in hospital and even though we’re both struggling with very different illnesses but years ago finding someone who also had an NJ tube helped me so so much. i always felt embarrassed going out with my tube and you have really helped my confidence. i dont know why im talking to you, its just really hard to imagine you’re gone, youve helped so many people and you were so so brave in the face of chronic illness.
I don't know you but dont stop fighting 😢🙏🏻 or try not to. I'm not in your shoes so I don't hold or know the full weight of what you're going through but I hope you do recover, and feel better soon. 💕
Yes...I hate that every single time I go to the hospital or see a new doctor they always either ask "have you been diagnosed with anxiety" or say "i see you have a history of anxiety" Yes, I do have anxiety, but I can tell the difference in the symptoms. Sigh.
@lada zibarova Fake what? Most of these conditions have very objective, measurable symptoms and signs that you can test for. The only reason why they don't do that is because they are paid the same money regardless of actually helping anyone. If you go to a private doctor and pay them, they will have the incentive to actually try and help you because it nets them more money.
@lada zibarova Problem is not faking. It's imagining diseases you don't have (hypochondria) and the sick brain causing actual problems elsewhere (psychosomatic problems). Because noone has a complete understanding of the human brain, lots of doctors will wrongly guess that all your real physical issues are just complications from your mental issue and not do tests that cause any difficulty (like a tiny risk of needle infections when drawing blood).
I agree. I have anxiety. I went in to the ER with symptoms not at all fitting to anxiety and they were sure it was anxiety and I was being paranoid. I pushed for tests. Turns out I had a blood clotting condition and if I got sent home I would have died within the next day or two. I got hospitalized for a week and need transfusions. I had bruises that turned black, blood blisters in my mouth and throat and ridiculously heavy menstrual blessing, like every 15-30 needing to change my tampon bleeding. But it was just anxiety they thought
Shhhhhh Jared D....Amy wants everyone to believe she's going to die young. Of course she'll die young from either Sepsis or another infection, she won't die from her supposed medical issues. Most of these people die from Sepsis or other types of infections. You have to realize most of these Anorexic people want feeding tubes etc. so they don't have to eat real food. I haven't a clue why doctors allow this, it's ridiculous. Doctors can only 'guess" your life span. I had an uncle diagnosed with cancer and was told he'd be dead in 6 months. (he was 70 yrs old) Funny, he lived to be 95 yrs old and died in his sleep.
holiday 2406 she’s not anorexic she has a condition called EDS her stomach is physically paralyzed. She physically can’t digest food. She tries to eat as much as she can. Stop trying to self diagnose others. Doctors don’t give out medical attention to people who are faking. I don’t know how she could possibly fake a multiple doctors, scans, nurses, surgeons, and solid evidence but ok Dr.Holiday2406 😂
@@holiday-td6hx idiotic moron. Quit commenting if all you're going to do is insult this amazing young lady. Your ignorance is astounding. Go educate yourself. If you're capable.
It's so frustrating at times because my EDS affected my mental health, and then Doctor's believed that my physical health problems were in my head, when both were having a knock on affect on each other, thankfully now my Doctor's understand the difference but also the way they overlap. I'm now working really hard on repairing both, they've been neglected of help for years but I feel I'm starting to move in the right direction. Thank you for educating, raising awareness and sharing your story, it's comforting to know you're not alone. ❤
This popped up for me to watch , after your passing. I miss you so much Amy!!! I hope your running free and doing what you want up there. I love you!!! 🥺🥰🥺
Joo ei se ole vielä tullut mitään muuta ku ei ole mitään infoa kun ei oo vielä ihan hyvin menee menee ihan mukavasti menee ihan mukavasti menee ihanin mukavasti menee
I was diagnosed with POTs MCAS and Fibromyalgia along with mental illness. Two doctors kicked me out of their office telling me everything was all in my head and that I was faking being sick. We finally got a great team of doctors and I’m trying to get back to normal. It’s hard with chronic illness but I try to stay positive and keep others that are struggling just as positive. Thank you for shining a light on chronic illness! It really makes people feel less alone. P.S if you want to travel you can always call the airports ahead of time and they can help you figure out a way to accommodate you. I travel a lot in the states and have had help from air lines. The longest trip I have planned is Australia in September so that’s going to be an interesting trip with chronic illness.
I'd love to hear other people with chronic illness, what are your life goals? I've had severe mental illnesses since I was 9 (31 today) and my goals are: - Live on my own again - Have enough energy to take care of both my apartment and myself - Get my books published - Have a girlfriend I think these are realistic goals for me. I've kind of given up children sadly, but I have my cat purring in my lap right now and that's pretty good too
I'd like to get a bachelors degree and have good health insurance. Buy a house, and spend as much time as I can with my family and friends before I go.
So sad to learn she passed away.😥 Despite her shortened life Amy did a tremendous amount to educate and increase awareness of this disorder. May she RIP! ⛅️ 👼 ⛅️
@@lyt6732 That is one of the bad things I’ve noticed about chronic illnesses is people get used to them pulling through a lot of health scares, but sadly, eventually, their luck runs out. I say that as a person with chronic health issues, myself.
I think your emotional parsimony is elegant and that “gives” us a stance of acceptance of a “robust” maturity that impresses me. Many years of living for you, the imponderable is more visible than predictions.
Gosh, I would get so excited when I received notifications that Amy had posted a new video to her channel. Wasn’t ready for her last post. Absolutely heartbreaking. 💔 Sure will miss receiving that notification. Rest easy sweet Amy, you deserve it. 😢
You are a warrior and an amazing advocate for this condition. Thank you for sharing your story and personal life with us. You handle everything with such grace and poise. Thank you for being the face of never giving up.
I loved her videos. She is such a positive young woman and did a great job bringing awareness about these conditions. I hope she is at peace. Beautiful soul gone too soon ♥️
Rest In Peace Amy. You will be missed terribly but glad you aren’t in pain anymore. I bought my electric heat pack because of you about a year ago and I love it.
Just happened upon Amy and found out at the same time she passed away..from what I seen, she fought hard to stay here, sometimes you just get tired and stop fighting!! Sweetie you’ll be missed by many!!
Amy you do a fantastic job in explaining EDS. You being positive and spilling that over to your viewers is wonderful. I to have some major health issues I deal with on a constant bases. Sometimes you can start to feel beat down. I just get up take a deep breath and realize that it could always be worse. I've had people ask me how do you do it? I just tell them it is, what it is. You just have to get out there and live your life to the fullest. Take each day your are given and enjoy the little things that most people take for granted. Thank you for your videos. You are a survivor and a warrior. God speed.
Really sad that this has popped up now. Amy, I hope you are at peace, you were a true warrior and helped so many people along the way. You will never be forgotten, fly high angel. Tom, what an amazing young man you are too and have been in my thoughts, along with Ellie and the rest of your family. Sending you so much love from the UK. I have followed you all for years and you are so inspiring. Take care of yourselves and know that we are here all here for you.
Hi! I have gastroparesis. It's nowhere near as bad as yours. I've also suffered from a lot of depression and anxiety all my life... I just want to say that I love you because you are such a strong, determined, intelligent beautiful woman. Your boyfriend is very fortunate to have you.
My heart hurts upon hearing she passed. It’s also important to let people know how much they are loved and cared about........life is so short and we never know when someone’s time is up.
I just got diagnosed with hEDS this summer, and bc the drs all knew I had a history of serious mental health issues I always found myself feeling the need to specify that "no this is not in my head, I actually see my joints go out of place, my friends do as well" and it was always so terrifying for me bc I felt like they wouldn't believe me. And can I just say the last few months have been a real mess for me with my health, it seems like it's all deteriorated so fast. It's been especially difficult with my mental health, just being trapped in the thoughts of how I will never function properly and I can never do the things I want or be a "useful" part of society (whatever that even really means), but my friend pointed me toward your channel and it's so nice (in a cruel way) being able to have someone that understands the physical problems I have. So just thank you for existing through this I guess. You're doing good with your life
I know your comment is old but... I know how you feel. I live w chronic illness and mental health issues combined and for the longest time I beat myself up for not being able to hold down a proper 9-5. The best thing I ever did for myself (starting in my 30s) was accepting my limitations with chronic illness and chronic fatigue. Don't set yourself up for failure by trying to fit the mold of what you or others perceive to be 'the right way'. My health has actually gotten better with knowing my limits and refusing to go past them. Listen to your body 💕
My docs took a while to accept that my physical illnesses weren't all in my head due to previous diagnosed mental illness. Which meant I had to fight a lot to say, "look hey no! I feel x, y and z, and no it is not all in my head, please test me to prove/disprove its all in my head and don't just assume, yeah, thanks." Takes time sometimes to stop that association so I can totally understand the difficulties you faced with trying to get that sorted out
LiveForever I understand this, the neurologists I’ve gone to still say my seizures are just anxiety..they happen in my sleep as well as when I’m awake so like how does that make sense..?
@@kaylaquick590 I had a primary doctor tell me the same thing,(for YEARS) that I was anxiety-ridden due to horrendous headaches and vomiting issues. Come to find out I was dealing with Hydrocephalus, that I was born with.(this was prior to CT-scans. I was in a Neurosurgeons office the next day after this was diagnosed. Since then, I have had 28 shunt revisions and the headaches and the vomiting is still happening every day. You might send your medical records to a larger Medical Center if you have something close to you. This may help you. I am not saying you have what I have been diagnosed with, but for a doctor in this day and age to tell you it's just anxiety....is ludicrous. (BTW this Primary Dr. apologized to me after this was found out.....as well.
LiveForever I’m currently going through this and have been for the past three years. I’ve been in hospital recently and they wouldn’t let me see the physiotherapist or occupational therapist when I asked, but forced me to see a mental health specialist which was so humiliating because I’m doing well with my mental health and the mental health specialist even apologised to me that they forced me to see them. I’ve since been back to a&e and they were nicer to me. It’s just so difficult to get your points across about the pain you go through when doctors presume that it’s all in my head, when I know it’s definitely not.
I don't feel sorry for you. I admire you girl! I admire your positivity and how strong you are. You are amazing! Stay strong and never stope being you! I really hope that soon enough you will have all those things that you wish for xx Lots of hugs and love to you 🤗😘
I've had both hips replaced. Was 39 with the right hip and 40 with the left. Within a year the procedure and recovery time was pretty quick. I was walking within 3 days of my right side; the incision was made more to the rear closer to the right glute. The incision the left side was made the front above the quadriceps. I was walking the next day. Didn't use a walker at all with the left side replacement. I know the healing process is tough for you. But the hips were not so bad. Knees are a different story. I'm going to hold off on the knees and back as long as I can. If you have your hips replaced and can do aqua therapy for rehab, water is a great tool. Your life expectancy is when GOD says, not a doctor. Im sure you help alot of people with your videos. You're an inspiration. You are more in touch with your mortality and more prepared than most people. So your quality of life on a positive level is most excellent. So stay positive and stay in hope. Be the inspiration.
I'm a nursing student and your videos help me so much in understanding the patient's side, and you also explain so much about the illness, how it works, all the interventions. Thank you so much for all the vids and all the best, stay strong
I know someone who has EDS, is trying to recover from an eating disorder, and is currently pregnant 😬 I can’t imagine what she’s going through but I’m happy that she’s getting the chance to bring a sweet little boy into the world!
You have definitely changed my life, Amy. Thank you so much, for being such an amazingly positive and genuine person. You have given me the strength to take pride in who I am, and, watching your videos, I feel less alone in my own battles. Love and support you always 💕
This is such a random comment, but I love how expressive you are when your talking. 😅 Some people find it annoying when people use their hands a lot when they're talking, or they use a lot of facial expressions, but I love it. I think it just shows off your happy, upbeat personality a lot better. 😙
That concern you had about not telling a professional about mental health issues because they could ignore physical issues by dismissing things as mental health issues is completely valid. That exact concern was the reason i was undiagnosed for years. I have dysautonomia, but it didn't get severe until i was 14 and already attending regular psychologist sessions and diagnosed with severe depression and anxiety. Every time a medical test came back normal, i would be told i was fainting from anxiety, i was fatigued cause of depression, i had chronic nausea from anxiety. It got to the point where i started to believe that i was faking my own illness, which sounds fucking crazy but its what being told over and over again that youre mentally ill and nothing else does to you when you actually do have an underlying physical illness. I actually did see a cardiologist who shouldve been able to diagnose me with dysautonomia when i was only 15, but he dismissed my low blood pressure cause on that particular day it was just out of range of being diagnosable, and my chronic joint pains as "growing pains". My mum holds a resentment to that cardiologist to this day.
Thank you so so much for bringing those splints to my attention! I ordered mine before the video even ended. You've saved me a lot of pain and discomfort! Love from South Korea! x
You are amazing, really impressed with your positive outlook on life. My dad is having late stage stomach cancer and is currently on TPN, don't think he can handle home TPN like you. God bless and continue to live life to the fullest.
It's so strange going back and watching this. She's talking about it, but if she only knew she had just under 2 years left. She really did fight so hard.
I'm hopefully going to get an EDS diagnosis next month and it blows my mind that my bladder issues (which sound eerily similar to yours) could be caused by EDS. As soon as you described it I felt so relieved that I wasn't alone!
My issues are related to mental health since the age of nine your attitude and outlook is so wonderful in the best sense. I try awfully hard to stay positive been hospitalized dozens of times self harm etc. The point is thank you for the strength I can't imagine comes easily I thought for a long while the end of my story was already written I've reassessed that. So thank you, truly. Bryan
I am so thankful I found your channel. I have POTS and a connective tissue disorder (though not EDS) with a lot of the same complications other than the digestive system paralysis. It is so fascinating to hear your experiences with these conditions. Thanks so much for sharing.
I often forget that I'm not hooked up and push around my IV pole when I don't need to. I have even wandered around outside with it when it's no even hooked up to me. Its always good for a belly laugh when someone finally notices.
I would like to thank you for the videos you make and your willingness to talk about your EDS. My niece, a 16 year old in high school, was just diagnosed with EDS about a year ago. It took at least 2 years of persistent advocacy from my sister before they arrived at a diagnosis. Because she's overweight, they kept insisting that all of her symptoms were from insulin resistance and not getting enough exercise. She has been diagnosed with POTS, MCAS, depression/anxiety, and now they are trying to figure out the source of her frequent, debilitating stomach pain. Her colon seems to be emptying ok, but there may be a hernia that comes and goes. She's determined to become a sign language interpreter and is taking college-level classes while in high school. She finds it really hard when the days of fatigue hit and she needs a wheelchair to get around her school, because she "looks" healthy at 5'10" and 200 pounds. My sister has gone to bat for her several times with the school and teachers when they appear reluctant to accommodate her needs. Thank you SO much for your efforts to educate people! I will be passing on the information about your site to my sister.
Hey Amy! I'm 14 and I have EDS and I've been having a lot of problems with my stomach and bladder, and my mum and I believe I have POTS. I've been watching you for a bit and I love your channel and how upbeat you are! Thanks for making videos!
Meif'wa Lover! hey, I’m 19 now, I wasn’t diagnosed until I was 17 but I wanna say, please stay strong cuz I know how tough it can get, especially with trying to get diagnoses and help for all the problems. There’s always ups and downs but your mindset can change everything! Wishing you the best.
I keep coming back to her videos because I miss her :/ I wish I could give her my life instead because she was such a beautiful, strong person and she deserved to have a long and happy life
Thanks for the Hot Pod recommendation, got myself one from my local chemist warehouse and it warms up to just the right temp and that thing has stayed warm for literally HOURS! My frozen feet Thankyou so much x
My heart hurts so bad after the news of Amy passing away.. can't believe she's not in this world anymore. And now this was recommended to me and I want to cry. I hope she is in a better place, free and running. I'll miss you 💗
It’s so unbelievable to think she isn’t here anymore
It doesn’t feel real :(
I found out she passed why I was at work yesterday. I almost cried. Then this morning this was recommended to me as well and I was like, why does TH-cam hate.
So sad
I know right I am crushed 😢😥😢😥😢😥 she is still here tho just in a different form
Why did this pop up now? You are amazing! You will be missed and remembered by so many. We love you, Amy.
@@Schrodingers_Kat thanks. We know that.
@@Schrodingers_Kat no. Don't apologize. Honest mistake. I was trying to find a way to explain it and couldn't. I wasn't trying to sound like a dick. I apologize.
th-cam.com/video/UgnoT9gdwtM/w-d-xo.html
Having this recommended after you find out that this beautiful soul has passed on crying is a understatement hurts my heart God bless all her loved ones and family. Friends this is a huge loss such an amazing person 🤍🙏🏼🫂🥺
❤️😥❤️😥 I know I can’t even process the emotional stuff anymore I just keep telling myself that she is no longer suffering and she is in a better place 😥😥😥I still can’t believe it tho
Same, feel so sad. I hadn't hit the like button. Also I left the tablet reproducing her videos with all commercials, maybe helps Tom s tiny bit
Same.. ever since i watched that video YT has been recommending her videos to me. I just couldnt rewatch them until now. Still shook from the news:/
@Jim Blogs yes and that is sad it is just that this video is about her and she passed as a very young lady and well known! Lots of people are sad and lots of people are also dealing with other people passing too I’m sure so we also need to except that some people are going to take it more seriously then others! You are right tho just this is about her!💕
I just found out its been a month. I had no idea n a year ago i posted. Sorry everyone hugs
Hearing all her goals and plans to marry Tom and have kids is heart wrenching
😢 why is the world so cruel she was such a beautiful soul
th-cam.com/video/UgnoT9gdwtM/w-d-xo.html
Sounds like she sadly had a very severe form of EDS with heart issues.
All the girl wants is to have a good life with kids and travel, then her last yr of life there's COVID, aka zero traveling.... Gosh, I really hope u're visiting every place u ever wanted to see in the afterlife. RIP Amy.
💔😔
Oh Amy! I miss you already!!! My heart is breaking of hearing of your passing, I have a daughter your age and my heart breaks for you mother. You are so loved and I will miss you forever.
I know right I can’t handle it 😖😩😫😥😥😥
I wasn’t diagnosed until I was 50. Yes, I’m in pain, yes I have dislocations, and other issues... but they are small compared to this young lady. Rest In Peace.
My heart breaks for her family, Tom, and friends. I cried on and off all day when I found out she passed. She was such a bright beautiful soul. She was so brave and always tried to have such a positive outlook no matter what she was facing. She was a one of a kind. We'll miss you sweet angel. My prayers go out to her loved ones.
RIP thank you for being a voice for the chronic illness community. I have POTS and MCAS, watching you helped me on my hard days. ❤️
I still cant believe she has gone, I have watched her for years, I still tear up when I think of her. It's not fair, it's just not fair!
I know. I cried when I found out.
I agree it is definitely not fair! She loved life so much even during the tough times and I am sure she went down fighting. God bless
You touched the lives of so many Amy. You don't realise how much you contributed to chronic illness education. You will be sorely missed. An angel is now in heaven. Condolences and prayers to your loved ones.
Amy was a precious human being. I will miss her for the rest of my life.😭💕😣
Ikr I literally can’t believe it
R.I.P. Amy. You will be greatly missed. Fly high sweet girl. You are no longer in pain ❤️
What happened? Did they say cause of death? So sad
@@sgough83 not Tom hasn't said but I'm sure it was something with her heart. She has been in and out of the hospital since Nov or Dec because she had a massive heart attack. Do you follow her on Instagram?
@@McCreaFamilyHomestead there’s a new video that says she’s had a few blood clots and her heart kept stopping I believe. So it was most likely her heart and the blood clots. I don’t want to assume anything though as I don’t want to upset Tom and the family.
@@abigray8585 I knew about all that from her Instagram. She posted a few times over there while in the hospital
I love the way your finger braces look. They actually look so high fashion, they’re super badass. I would totally wear them if it wasn’t morally wrong to do so (I don’t need them so I don’t want to make them fashion when people need them for serious things).
KaileexLove Kiwii Honestly!
I actually thought they were just rings and they looked so cool
omg i thought those were rings i was about to ask where she got them lol
I know right! They look so cute but I don’t want to be that guy 😂
@Gold Gold exactly. People don't realize if you hype it up and make it popular it actually helps us. If it wasn't for it being a fad being gluten free us celiacs would still have no options and the food would still be nasty
I have followed Amy for years & I’m so upset she’s passed away. I’m glad she’s no longer in any pain. Amy’s legacy will continue for years to come. The number of people the news of her passing has reached is obvious by the comment section of her videos. She’ll continue to help, educate & spread her positive outlook with millions of people to come. I hope you’re resting peacefully & my thoughts & wishes go out to Amy’s friends & family ♥️
I think TH-cam recommended this because I was searching Ehler-Danlos disease because my best friends child has been diagnosed with it and I want to know more to be able to support her more.
Thank you so much for this video.
Edit: Now reading the comments I've realized that she has unfortunately passed... I'm so sorry for everyone who is feeling her loss
She definitely had alot of suffering in her life and she handled it like a champ..
I pray she is with Jesus, that he is hugging her and telling her how much he loves her.
It's so eerie watching this a few days after her passing. Gosh. I barely knew her and I miss her.
This video keeps popping up in my recommended and keeps reminding me of her passing. So, so sad about this news. Amy inspired me so much, I'm in nursing school because of her. I owe her a lot and I hope wherever she is now she is at peace 💗💗💗💗
And in less than 2 yrs gone! Life just seems so unfair at times 😢
May she rest in peace 🕊️
Although you have a chronic condition, I praise you for your bravery.
You are a role model.
You are a lovely young lady🌻🤗💕💕💕
I didn’t even know those were braces on your fingers!!! The whole time I thought they were rings!! They are so fashionable! I love them!😂💓
Omg right
I thought so too
Same here , I was just admiring them thinking they look so pretty !
they dont ship to uk😅 and I'm only 12 so I cant afford them and my fingers are really painful do you have any other recommendations
They helped her fingers due to the hypermobility.
Damn, Amy! I'm a T-7 para with all the complications you could have that go along with it. I was in a motorcycle accident 31years ago this year. I was 35 when I was hit by a hit and run driver who t-boned me when he blew through a stop sign. They never thought I would survive through the night because of the massive trauma. Through the years I have contacted awful diseases and complications from the VA health system. I have bags and tubes for my bodily functions. I jokingly call it "my plumbing". And in the spirit of the video topic, my doctor told me "you're defying the odds"! With all the complications, I'm still here!
But despite all that and being paralyzed, I gotta give you credit Amy. You have a better attitude than me despite all the adversity you face. I have a lot of respect for people like yourself and how you deal with your health issues. You are so educated about your health and self sufficient.
All the best wishes to you... John
im so sorry you have to go through that man. i'm a praying man so ill be praying for you.
God bless you❤
I am southern granny. I was rushed pretty badly y thieves chashing each other. Now 25 years later I am enjoying my grandchildren and being lazy. I find something good because I lived.
@@markotik2 Hey Mark, I wouldn't call what you describe as miniscule!
When you have a life altering incident like we both had, it's not like fracturing an arm or leg bone and having it heal up and you move on with your life as it was. You and me were active people and if you were like me, you were a type A personality. I was an adrenaline junky. I crewed and flew a Black Hawk helicopter, was a Paratrooper, motorcyclist, etc.
This year is my 32nd year of being paralyzed only in the last two years am I coming to grips with it. I spent 30 years angry and contemplating suicide. But, I had a family to support. A wife, two small children. I just took two years off to get used to being paralyzed then went back to college, learned a trade using computers and went back to work for the military as a civilian.
Like you, I have to make enough trips to the VA hospitals that they all know me personally now. Thankfully, they have cleaned up the horrible conditions in the facilities I go to. A little to late. I have to deal with the unsterile conditions they were in 30 years ago. I survived a couple of killer hospital critters, thank God for my strong immune system. But it left me with many complications. Like you.
It sucks and I take many meds to keep functioning, like you. I'm 66 and retired now. I wish I had some words of wisdom to give you, but I don't. You will find a way of you want to. If you're strong enough and motivated. Look at Amy. She's so strong. Man, I give her props for being a fighter. Know your limitations and learn to accept them is all I can say. It took me several decades to find that out. Try pushing it from time to time. You might get frustrated. So use what you can. If you can feed yourself and do anything that makes you more independent, do it. You'll feel like you accomplished something.
Let me add something. Everyone used to tell me how lucky I was to survive. I always thought my excessive chase for the next adrenaline rush would either bring me satisfaction or kill me. I never thought I would be stuck in the middle like this. So people used to tell me there are others that are worse off than me. But it never made me feel any better knowing someone else was worse off than me. What a dumb thing to say, I used to think.
Well, Mark. Best regards and stay safe... John
John Brady Thank for your kind words - it all means a lot. I contracted MRSB in hospital and was so ill - was in for 3 months that time. Yeah it sucks taking so many meds - and I have =to take OxyContin 3 times a day, Pregabs along with the strongest amount of gabapintin allowed in a day - 1200mg - 400 x 3 times a day for really bad nerve damage / /= 24 hour lasting Fentanyl patches are on my arm all the time and I have prefilled morphine syringes
I end up needing to inject 3 or 4 times a day. Plus Xanax and Bromazem, Xanax for during the day and Temazepam for night with Ambien for when I have restless nights + when the pain gets unbearable keeping me awake. Also 16 x dihydrocodiene 4 times a day, plus a few other various tablets of unpronounceable names. I’ll admit ?I have a huge opiate addiction but at least ?I don’t have to pay for them currently.
I too should have died - ‘I died twice on the table but am glad ?I’m alive but need edjing a carer is shit - I can’t go shopping, nor cook tea, repack up for things when I do Manage to go shopping I can’t reach the shelves. Bad days and good days but believe I’ll be on large amounts of opiates forever and go into withdrawal if I’m even just a few hours without them.
I liter7finally came terms with it at the start of this before this crap happened and now I’m in high risk category. Now I just can’t go out at all as my local shops moved an extra mile away and there’s hardly any taxi services to help.
Your comments are great my friend- really have cheered me up a little so thanks a lot for that ✌️
Yeah I loved bikes and because I was a Flight Attendant for KLM airlines so could travel round the world every week but in japan I found a special edition, tuned to with mm’s of the legal limits I found a Yamaha eliminator in custom blue yellow with red highlands limited edition unable to buy here so go it sent back and it was my xmas prescient to myself - but toook it out on SMS’s even on quiet roads - was opening it up and leaning down on the windy country roads befor the pissed idiot hit me - then left th scene immediately. Sometimes AI give up but thing well. Im Alive and that’s a blessing.
I too was a junky for the extreme - tried wingsuit flying and have BASE jumped about 50 times. Raced bikes and my Nissan GTR round the Nurburgring Nordsliefe a lot of times.
I do miss my bikes but it’s annoying more that I won’t get to take my Ariel Atom and my race replica Ducati round the track. I used to do extreme sports like skydiving and racing in fast cars but obviously a II never to theres again.
And the illness regarding my stomach needed tubes and bags give me huge anxiety- scared if they leak. Worse in a wheelchair..
But yes that you for sharing this- 35 years is a long time for you. That’s not good.AT ALL.
Anyway one more thing - it’s been reading your replies. Gives me hope fir the future.thank so mush.
it’s sad watching this knowing she recently passed she was a ray of light an inspiration to so many i well miss her rip
I really hope that God keeps you here for a long time. Your positive soul is just inspiring and you are way too nice to go early. Life is sadly too fragile, but we will cherish every moment you share with us. 💕
My heart hurts reading my comment back. I can't process this, I wished for a longer time for you here. Hope you are know pain free darling. Sending lots of prayers, love and strength for Tom and her family and friends. ♥
I miss you so much sweet girl. I can't believe you're really gone... I truly cannot wrap my head around it. I just can't. I'm so sad, my heart is broken to pieces. I never thought this would happen, I just didn't. It doesn't seem fair.
Amy brought so much positivity, love, light & strength to everyone. She was the brightest light & the world is a bit darker without her here. I'll miss her forever. I wish she wasn't gone, but I hope she's in a much better place & is no longer in any pain or worry. I love her so much. Prayers to Tom & Amy's family. She was so wonderful, a truly beautiful soul! Forever & Always.
It’s beautiful and very sad that we still get to see you. It’s especially good when you are looking so healthy and you’re just chattering away!! Missing all your joy.
Fly high queen 👑 we love you and miss you 😢 gone but NEVER forgotten
If you keep up with most of her vids like me and already know what she’s talking about throughout the video, 11:54 is her life expectancy
I have Elhers Danlos too (but a different type) and PoTS. It's amazing to see you doing so much despite these conditions and it lovely to see you spreading awareness about EDS because nobody ever seems to get it!! ❤️❤️❤️
I totally agree
My mental health was affected by my illnesses
So much so
At 21 I spent 5weeks in a Mental health hospital
At 50 I still work through them
I for the past 20 years
Have also helped others with their Mental health issues
Asking for help is hard
Yet the biggest step
Loving today’s Q&A lovely ❤️
This poor girl. How could someone have so many horrible illnesses? It's just not right. I hope shes no longer in pain and I'm glad she doesn't have to deal with this stuff anymore but she didn't deserve any of it.
What the hell girl, I found your channel two days ago and can't stop viewing. I don't even have any connection to the topic, it's something I've never really thought about before until now and I'm finding it so educational and interesting. Keep it up!! You're super inspiring :)
You are going to be missed so much, sweet girl. I am still in shock that you're gone. I hope Tom or your family can fill us in on what you had planned on telling us later. What happened? God speed, sweetie!!
Only if she knew that she had less than 2 years to live :( rest in peace baby girl❤️ you’re pain free in there ❤️
it feels lik yesterday i found out you passed. ive been in and out of hospital the past 3 years being tube fed for a severe eating disorder that i likely wont recover from. i found your videos and i just really want to thank you for everything. i would always watch your videos in hospital and even though we’re both struggling with very different illnesses but years ago finding someone who also had an NJ tube helped me so so much. i always felt embarrassed going out with my tube and you have really helped my confidence. i dont know why im talking to you, its just really hard to imagine you’re gone, youve helped so many people and you were so so brave in the face of chronic illness.
How come you say you won’t recover?
I don't know you but dont stop fighting 😢🙏🏻 or try not to. I'm not in your shoes so I don't hold or know the full weight of what you're going through but I hope you do recover, and feel better soon. 💕
Yes...I hate that every single time I go to the hospital or see a new doctor they always either ask "have you been diagnosed with anxiety" or say "i see you have a history of anxiety" Yes, I do have anxiety, but I can tell the difference in the symptoms. Sigh.
yourmomisa fish - they are looking for any excuse to do nothing
@lada zibarova Fake what? Most of these conditions have very objective, measurable symptoms and signs that you can test for. The only reason why they don't do that is because they are paid the same money regardless of actually helping anyone. If you go to a private doctor and pay them, they will have the incentive to actually try and help you because it nets them more money.
@lada zibarova Problem is not faking. It's imagining diseases you don't have (hypochondria) and the sick brain causing actual problems elsewhere (psychosomatic problems). Because noone has a complete understanding of the human brain, lots of doctors will wrongly guess that all your real physical issues are just complications from your mental issue and not do tests that cause any difficulty (like a tiny risk of needle infections when drawing blood).
I agree. I have anxiety. I went in to the ER with symptoms not at all fitting to anxiety and they were sure it was anxiety and I was being paranoid. I pushed for tests. Turns out I had a blood clotting condition and if I got sent home I would have died within the next day or two. I got hospitalized for a week and need transfusions. I had bruises that turned black, blood blisters in my mouth and throat and ridiculously heavy menstrual blessing, like every 15-30 needing to change my tampon bleeding. But it was just anxiety they thought
Today , everyone suffers from some kind of anxiety. Stress is killing us.
When my grandmother was 65 she was told by a doctor that she had a deformed heart and that she wouldn't live very long. She lived to be 101 years old.
I love that. Doctors shouldn't be giving out 'life expectancies' that's not their job. That's the Morticians job.
Shhhhhh Jared D....Amy wants everyone to believe she's going to die young. Of course she'll die young from either Sepsis or another infection, she won't die from her supposed medical issues. Most of these people die from Sepsis or other types of infections.
You have to realize most of these Anorexic people want feeding tubes etc. so they don't have to eat real food. I haven't a clue why doctors allow this, it's ridiculous.
Doctors can only 'guess" your life span. I had an uncle diagnosed with cancer and was told he'd be dead in 6 months. (he was 70 yrs old) Funny, he lived to be 95 yrs old and died in his sleep.
holiday 2406 her stomach is paralyzed
holiday 2406 she’s not anorexic she has a condition called EDS her stomach is physically paralyzed. She physically can’t digest food. She tries to eat as much as she can. Stop trying to self diagnose others. Doctors don’t give out medical attention to people who are faking. I don’t know how she could possibly fake a multiple doctors, scans, nurses, surgeons, and solid evidence but ok Dr.Holiday2406 😂
@@holiday-td6hx idiotic moron. Quit commenting if all you're going to do is insult this amazing young lady. Your ignorance is astounding. Go educate yourself. If you're capable.
It's so frustrating at times because my EDS affected my mental health, and then Doctor's believed that my physical health problems were in my head, when both were having a knock on affect on each other, thankfully now my Doctor's understand the difference but also the way they overlap. I'm now working really hard on repairing both, they've been neglected of help for years but I feel I'm starting to move in the right direction. Thank you for educating, raising awareness and sharing your story, it's comforting to know you're not alone. ❤
I'm glad this was recommended to me. I miss you, Amy!
This popped up for me to watch , after your passing. I miss you so much Amy!!! I hope your running free and doing what you want up there. I love you!!! 🥺🥰🥺
Love how your face lights up when you talk about your future and goals, I wish you the absolute best and know you'll reach every single one of them!
Joo ei se ole vielä tullut mitään muuta ku ei ole mitään infoa kun ei oo vielä ihan hyvin menee menee ihan mukavasti menee ihan mukavasti menee ihanin mukavasti menee
I was diagnosed with POTs MCAS and Fibromyalgia along with mental illness. Two doctors kicked me out of their office telling me everything was all in my head and that I was faking being sick. We finally got a great team of doctors and I’m trying to get back to normal. It’s hard with chronic illness but I try to stay positive and keep others that are struggling just as positive. Thank you for shining a light on chronic illness! It really makes people feel less alone.
P.S if you want to travel you can always call the airports ahead of time and they can help you figure out a way to accommodate you. I travel a lot in the states and have had help from air lines. The longest trip I have planned is Australia in September so that’s going to be an interesting trip with chronic illness.
I'd love to hear other people with chronic illness, what are your life goals?
I've had severe mental illnesses since I was 9 (31 today) and my goals are:
- Live on my own again
- Have enough energy to take care of both my apartment and myself
- Get my books published
- Have a girlfriend
I think these are realistic goals for me. I've kind of given up children sadly, but I have my cat purring in my lap right now and that's pretty good too
Samir C. Cat I live with a roommate so I checked that off, I want to have a kid someday ultimately
And I take such good care of my cat too:) which I’m proud of. I live paycheck to paycheck and struggle a lot though...
Also I lift small weights now and then when months ago I couldn’t even lift my head up to get out of bed
@@OFFICIALsarahgein I've been there, keep trying, you can do it!!
I'd like to get a bachelors degree and have good health insurance. Buy a house, and spend as much time as I can with my family and friends before I go.
So sad to learn she passed away.😥 Despite her shortened life Amy did a tremendous amount to educate and increase awareness of this disorder. May she RIP! ⛅️ 👼 ⛅️
She had no idea she would only live for another year.. rest in piece sweet Amy you will be missed 💗
yeah.. definitely didnt expect it. she seemed to always bounce back.
@@lyt6732 That is one of the bad things I’ve noticed about chronic illnesses is people get used to them pulling through a lot of health scares, but sadly, eventually, their luck runs out. I say that as a person with chronic health issues, myself.
@@lyt6732 That's true... I'm very sad but also happy she is no longer in pain...
@@sweetluvgurl :(
I think your emotional parsimony is elegant and that “gives” us a stance of acceptance of a “robust” maturity that impresses me. Many years of living for you, the imponderable is more visible than predictions.
Gosh, I would get so excited when I received notifications that Amy had posted a new video to her channel. Wasn’t ready for her last post. Absolutely heartbreaking. 💔 Sure will miss receiving that notification. Rest easy sweet Amy, you deserve it. 😢
RIP Amy. You will not be forgotten by all the people you touched by your strenghth, courage and incredible positive attitude.
RIP MY FRIEND your a true hero and one beautiful lady ! I'm glad your not in pain any more you will be greatly missed. Thanks for all you helped .
You are a warrior and an amazing advocate for this condition. Thank you for sharing your story and personal life with us. You handle everything with such grace and poise. Thank you for being the face of never giving up.
I loved her videos. She is such a positive young woman and did a great job bringing awareness about these conditions. I hope she is at peace. Beautiful soul gone too soon ♥️
Rest In Peace Amy. You will be missed terribly but glad you aren’t in pain anymore. I bought my electric heat pack because of you about a year ago and I love it.
Just happened upon Amy and found out at the same time she passed away..from what I seen, she fought hard to stay here, sometimes you just get tired and stop fighting!! Sweetie you’ll be missed by many!!
I know right I am so sad 😭
Jean Manns I’m not sure I’d say she stopped fighting. Just her body couldn’t do it anymore.
@@sweetluvgurl maybe she didn’t stop and her body just said enough!
It's not that she was too tired but her heart was and had failed. We were quite fortunate to have had that last video from her.
Amy you do a fantastic job in explaining EDS. You being positive and spilling that over to your viewers is wonderful.
I to have some major health issues I deal with on a constant bases. Sometimes you can start to feel beat down. I just get up take a deep breath and realize that it could always be worse.
I've had people ask me how do you do it? I just tell them it is, what it is. You just have to get out there and live your life to the fullest. Take each day your are given and enjoy the little things that most people take for granted.
Thank you for your videos.
You are a survivor and a warrior.
God speed.
Omg this girl popped up on the feed. Geez what a massive loss. Such a lovely girl. Sooooo brave
Really sad that this has popped up now. Amy, I hope you are at peace, you were a true warrior and helped so many people along the way. You will never be forgotten, fly high angel. Tom, what an amazing young man you are too and have been in my thoughts, along with Ellie and the rest of your family. Sending you so much love from the UK. I have followed you all for years and you are so inspiring. Take care of yourselves and know that we are here all here for you.
Hi! I have gastroparesis. It's nowhere near as bad as yours. I've also suffered from a lot of depression and anxiety all my life...
I just want to say that I love you because you are such a strong, determined, intelligent beautiful woman. Your boyfriend is very fortunate to have you.
Your an EXCELLENT teacher 👩🏫. Thank you 🙏 for answering such pertinent questions. Amy you can do anything you want cuz your a “DOER”!!!
My heart hurts upon hearing she passed. It’s also important to let people know how much they are loved and cared about........life is so short and we never know when someone’s time is up.
Rest easy and peacefully beautiful girl. my heart hurts knowing you arent here anymore. watched you for so long. Miss you forever
I was just watching the hip surgery vlog and this notification popped up now I’m a happy guy
I just got diagnosed with hEDS this summer, and bc the drs all knew I had a history of serious mental health issues I always found myself feeling the need to specify that "no this is not in my head, I actually see my joints go out of place, my friends do as well" and it was always so terrifying for me bc I felt like they wouldn't believe me. And can I just say the last few months have been a real mess for me with my health, it seems like it's all deteriorated so fast. It's been especially difficult with my mental health, just being trapped in the thoughts of how I will never function properly and I can never do the things I want or be a "useful" part of society (whatever that even really means), but my friend pointed me toward your channel and it's so nice (in a cruel way) being able to have someone that understands the physical problems I have. So just thank you for existing through this I guess. You're doing good with your life
I know your comment is old but... I know how you feel. I live w chronic illness and mental health issues combined and for the longest time I beat myself up for not being able to hold down a proper 9-5. The best thing I ever did for myself (starting in my 30s) was accepting my limitations with chronic illness and chronic fatigue. Don't set yourself up for failure by trying to fit the mold of what you or others perceive to be 'the right way'. My health has actually gotten better with knowing my limits and refusing to go past them. Listen to your body 💕
Girl, I thought your finger braces were rings!! They're so fashionable!!
Same here.
They aren’t ?? :O
@Jim Blogs who asked your opinion?
I love them. Is that weird?
@@lamyaanm2587 👏🏻👍🏻
You are a warrior 💪🏼 Greetings from Argentina 🇦🇷
My docs took a while to accept that my physical illnesses weren't all in my head due to previous diagnosed mental illness. Which meant I had to fight a lot to say, "look hey no! I feel x, y and z, and no it is not all in my head, please test me to prove/disprove its all in my head and don't just assume, yeah, thanks." Takes time sometimes to stop that association so I can totally understand the difficulties you faced with trying to get that sorted out
LiveForever I understand this, the neurologists I’ve gone to still say my seizures are just anxiety..they happen in my sleep as well as when I’m awake so like how does that make sense..?
@@kaylaquick590 I know that feeling, it is very frustrating! Just keep persisting with it
@@kaylaquick590 I had a primary doctor tell me the same thing,(for YEARS) that I was anxiety-ridden due to horrendous headaches and vomiting issues. Come to find out I was dealing with Hydrocephalus, that I was born with.(this was prior to CT-scans. I was in a Neurosurgeons office the next day after this was diagnosed. Since then, I have had 28 shunt revisions and the headaches and the vomiting is still happening every day.
You might send your medical records to a larger Medical Center if you have something close to you. This may help you. I am not saying you have what I have been diagnosed with, but for a doctor in this day and age to tell you it's just anxiety....is ludicrous.
(BTW this Primary Dr. apologized to me after this was found out.....as well.
I feel you, i was misdiagnosed for 7 years because of my traumatic childhood
LiveForever I’m currently going through this and have been for the past three years. I’ve been in hospital recently and they wouldn’t let me see the physiotherapist or occupational therapist when I asked, but forced me to see a mental health specialist which was so humiliating because I’m doing well with my mental health and the mental health specialist even apologised to me that they forced me to see them. I’ve since been back to a&e and they were nicer to me. It’s just so difficult to get your points across about the pain you go through when doctors presume that it’s all in my head, when I know it’s definitely not.
I don't feel sorry for you. I admire you girl!
I admire your positivity and how strong you are. You are amazing! Stay strong and never stope being you!
I really hope that soon enough you will have all those things that you wish for xx
Lots of hugs and love to you 🤗😘
Thank You for being open about your health. So sorry there is so much going on that impacts your life. You give me hope.
Watching those ads all the way through because I gotta help out ❤️ you’re so strong and I’m glad to support and watch your videos
Sadie Blackwell if you skip ads do they still get $$ from it???
Thank you so much! ❤️❤️
They have electric heated packs on groupon, mine is lilac. Hope this helps xx The brand is called Dickens!
I've had both hips replaced. Was 39 with the right hip and 40 with the left. Within a year the procedure and recovery time was pretty quick. I was walking within 3 days of my right side; the incision was made more to the rear closer to the right glute. The incision the left side was made the front above the quadriceps. I was walking the next day. Didn't use a walker at all with the left side replacement. I know the healing process is tough for you. But the hips were not so bad. Knees are a different story. I'm going to hold off on the knees and back as long as I can. If you have your hips replaced and can do aqua therapy for rehab, water is a great tool. Your life expectancy is when GOD says, not a doctor. Im sure you help alot of people with your videos. You're an inspiration. You are more in touch with your mortality and more prepared than most people. So your quality of life on a positive level is most excellent. So stay positive and stay in hope. Be the inspiration.
I'm a nursing student and your videos help me so much in understanding the patient's side, and you also explain so much about the illness, how it works, all the interventions. Thank you so much for all the vids and all the best, stay strong
I know someone who has EDS, is trying to recover from an eating disorder, and is currently pregnant 😬 I can’t imagine what she’s going through but I’m happy that she’s getting the chance to bring a sweet little boy into the world!
You have definitely changed my life, Amy. Thank you so much, for being such an amazingly positive and genuine person. You have given me the strength to take pride in who I am, and, watching your videos, I feel less alone in my own battles. Love and support you always 💕
She gave courage to soany people out there fighting something openly or closed behind the doors...
I miss her💕💕💕💕💕
HI I WATCH YOU ALL THE TIME. THANK YOU FOR TELLING ME ABOUT YOUR SELF. I HAVE A CHRONIC ILLNESS. IN PAIN EVERY DAY, SO UNDERSTAND YOUR PAIN.
This is such a random comment, but I love how expressive you are when your talking. 😅
Some people find it annoying when people use their hands a lot when they're talking, or they use a lot of facial expressions, but I love it. I think it just shows off your happy, upbeat personality a lot better. 😙
That concern you had about not telling a professional about mental health issues because they could ignore physical issues by dismissing things as mental health issues is completely valid. That exact concern was the reason i was undiagnosed for years. I have dysautonomia, but it didn't get severe until i was 14 and already attending regular psychologist sessions and diagnosed with severe depression and anxiety. Every time a medical test came back normal, i would be told i was fainting from anxiety, i was fatigued cause of depression, i had chronic nausea from anxiety. It got to the point where i started to believe that i was faking my own illness, which sounds fucking crazy but its what being told over and over again that youre mentally ill and nothing else does to you when you actually do have an underlying physical illness. I actually did see a cardiologist who shouldve been able to diagnose me with dysautonomia when i was only 15, but he dismissed my low blood pressure cause on that particular day it was just out of range of being diagnosable, and my chronic joint pains as "growing pains". My mum holds a resentment to that cardiologist to this day.
Thank you so so much for bringing those splints to my attention! I ordered mine before the video even ended. You've saved me a lot of pain and discomfort! Love from South Korea! x
"Let me just whip out my white board." Amy, you're hilarious and I love your channel
Rachel Schuller ahaah 😂😂😂
@@amyleefisher52 we love you and miss you I know you won’t read this but so much love to Tom and everyone else
Miss you so much and your video cheered me up when those bad things and emotions came. RIP Amy and we love you so much
I think it's great the way you talk about everything , you just say what you have to say and keep its real , good on you
Impossible you can't die soon! We *NEED* Amy Lee Fischer!
CybZer0 what's her life expectancy?
@@lyla4791 she doesn't have a number. She just says it's shortened compared to the average person
Yeah
Can you do a bob ross painting challenge? I’ve seen that you are super creative! :)
You are amazing, really impressed with your positive outlook on life. My dad is having late stage stomach cancer and is currently on TPN, don't think he can handle home TPN like you. God bless and continue to live life to the fullest.
It's so strange going back and watching this. She's talking about it, but if she only knew she had just under 2 years left. She really did fight so hard.
I'm hopefully going to get an EDS diagnosis next month and it blows my mind that my bladder issues (which sound eerily similar to yours) could be caused by EDS. As soon as you described it I felt so relieved that I wasn't alone!
Amy saved my life when I first got sick . Long days in bed she kept me company ❤❤❤❤
My issues are related to mental health since the age of nine your attitude and outlook is so wonderful in the best sense. I try awfully hard to stay positive been hospitalized dozens of times self harm etc. The point is thank you for the strength I can't imagine comes easily I thought for a long while the end of my story was already written I've reassessed that. So thank you, truly. Bryan
I am so thankful I found your channel. I have POTS and a connective tissue disorder (though not EDS) with a lot of the same complications other than the digestive system paralysis. It is so fascinating to hear your experiences with these conditions. Thanks so much for sharing.
Love that you have goals and a realistic view on living for the day not with and expiration date❤️
Such a positive way to live, isn't it? 😍
I often forget that I'm not hooked up and push around my IV pole when I don't need to.
I have even wandered around outside with it when it's no even hooked up to me. Its always good for a belly laugh when someone finally notices.
I would like to thank you for the videos you make and your willingness to talk about your EDS. My niece, a 16 year old in high school, was just diagnosed with EDS about a year ago. It took at least 2 years of persistent advocacy from my sister before they arrived at a diagnosis. Because she's overweight, they kept insisting that all of her symptoms were from insulin resistance and not getting enough exercise. She has been diagnosed with POTS, MCAS, depression/anxiety, and now they are trying to figure out the source of her frequent, debilitating stomach pain. Her colon seems to be emptying ok, but there may be a hernia that comes and goes. She's determined to become a sign language interpreter and is taking college-level classes while in high school. She finds it really hard when the days of fatigue hit and she needs a wheelchair to get around her school, because she "looks" healthy at 5'10" and 200 pounds. My sister has gone to bat for her several times with the school and teachers when they appear reluctant to accommodate her needs. Thank you SO much for your efforts to educate people! I will be passing on the information about your site to my sister.
Hey Amy! I'm 14 and I have EDS and I've been having a lot of problems with my stomach and bladder, and my mum and I believe I have POTS. I've been watching you for a bit and I love your channel and how upbeat you are! Thanks for making videos!
Meif'wa Lover! hey, I’m 19 now, I wasn’t diagnosed until I was 17 but I wanna say, please stay strong cuz I know how tough it can get, especially with trying to get diagnoses and help for all the problems. There’s always ups and downs but your mindset can change everything! Wishing you the best.
❤️ you’re still sending your message, and it help us to this day.
I keep coming back to her videos because I miss her :/ I wish I could give her my life instead because she was such a beautiful, strong person and she deserved to have a long and happy life
Makes me sad you were such an amazing inspiration to me be free from all pain suffering fly high angel
You handle your illnesses with such positivity; at least with us! You’re a very mature young person, and I admire your courage! ♥️🙏✌️🦋
I think I’ve mentioned it before, but when ur chronically unwell, cruising is the BOMB!!
Thanks for the Hot Pod recommendation, got myself one from my local chemist warehouse and it warms up to just the right temp and that thing has stayed warm for literally HOURS! My frozen feet Thankyou so much x