Here just to hear your voice & get some comfort. Amy you’ve done so much for me ❤❤ forever in my heart & so very thankful to have your videos packed with information for us chronic illness warriors ❤
Aw no!! 🥺 I was just thinking I haven’t had notifications from Amy in ages and I was worried she had passed away. I’m so sad that she actually has! RIP Amy..
Amy, Your health comes first. If you need to put vlogs together, then do it. You have to take care of you. Try not to stress about getting perfect videos. You come first love. Ray
I have mild POTS and I’m glad you acknowledge that when lying down heart rate almost drops too low. So many people are very open about how high their heart rate goes but not how low. For me when I lie down and especially when I sleep my heart rate drops. When I’m lying down it goes to the low 50’s but when I sleep it drops to the 40’s
Man, POTS must really be a pain when it's a bad day. I'm at 152BPM at the hardest part of a spin class. I can't imagine my heart beating that fast just standing up.
Jeneva Griffin I know this was a while ago. Anyways some doctors compare it to copd and congestive heart failure. I believe it was Dr.Blair Grubb who said that.
i have positional orthostatic hypotension. same symptoms of POTS, but different causes and specifics. first time the doctors tested me, my heart rate went up by 30 just sitting up, 40 standing. getting worse now. i already have a fast heart rate without sitting or standing up. its a pain because (at least for POH) dizziness occurs from a span of instant to 3 minutes. you could pass out as well, which is happening to me. so you could think you're fine, and wake up on the floor wondering what you were last doing. havent broken anything yet, but probably will.
P.O.T.S. can make you pass out sitting. Is hypotension just like pots but with the added high blood pressure? I always walked my dog the same route so my husband knew which direction to find me, if he had to come home.
Exactly. She does so much for us and awareness. Random suggestion, but how about an un edited vlog. I love bloopers and think it would be fun to watch.
You do not need to apologize to us. Your video today was as enjoyable and interesting. Not that I liked that your BP was wacky, but your blood sugar and orthostatic BP and heart rate. It's encouraging to see you get through stuff because you have to, even though you wanted to be resting in your bed. I look forward to your vlogs, but I would never put pressure on you to do any more than you are able to. No one of your subscribers would ever hold a video against you. You just do what you need to do. We'll manage and follow your IG.
If posting several days as one vlog means you can focus more on your health and taking care of yourself, then I am absolutely ecstatic to watch the vlogs this way! Whatever you need to do to put yourself first we will all support ❤❤❤
Get girl! No need to apologize ever! I live with a few chronic illnesses too, so I was able to watch The Act in like 2 or 3 days. Creepy crazy but it grabbed my attention
You’re not letting anyone down. I kinda like the way you have them. A few days bunched together. 💕 take care of you first! We all understand. 💜POTs sucks. It causes havoc with me.
Amy with everything that you have on your plate and the amount of time you spend just doing what it takes to keep your body running it's amazing that you find time to vlog. So for me I appreciate anything that you put up and will watch it everytime. It never gets old or boring and I just enjoy keeping up with you, Tom and whats going on in your life.
Love watching your Vlogs!!! Hope you are feeling better!! You have a wonderful man, the way he worries, cares, and loves for you!! You have something very special!! Look forward to your next Vlog!! Love from America!!
I'm 17 and I have mild hearing loss in my right ear and I was given a hearing aid last year. I'll admit I haven't been wearing it as much as I should but I find it really helps in my daily life - you shouldn't be scared, worried or anxious to need/ have hearing aids because they really do help ❤️
I like when you put loads of days together. Means I can sit down and really enjoy it rather than just watching a couple of mins at a time. At the end of the day whatever we like you can only do what your mind and body lets you. There's definitely no need to feel guilty about it - we all have our limits. Maybe your worrying unnecessarily? ;)
Just wanted to say thank you for sharing about POTS! I have a friend who may have POTS and I feel more able and I help her because I knew a little about it! 💕
Don't feel bad if you cannot vlog everyday. You have to remember your health comes first before us subscribers. So if you don't feel like you cannot vlog on any given day then the rest of us can wait. So please don't apologize for something you have no control over.
My pots always get worse when I‘m stressed which is very annoying since I‘m graduating soon. For me the worst symptom besides the dizziness is that I have to sleep so much! Up to 13 hours a day and I am still tired. I love your vlogs❤️
Amy you never have to apologize for not being able to get your vlogs done daily. The way you have been doing them is perfectly fine 😊 I suffer from osteoarthritis, fibromyalgia and chronic fatigue and if I was doing what you do (TH-cam wise), my vlogs would be the same way. I am so impressed that you are able to vlog when you are unwell, it is very inspiring. When I have a bad day I want nothing to do with anyone. And unfortunately of late, that has been how I feel. I so love your vlogs and appreciate all that you share with us ❤. Take care sweetie and give that man of yours a huge hug and a kiss for taking such wonderful care of you 😘 Not many of us that suffer with illness have the support that you do. God Bless you ❤🙏
I don't really remember how I even got to your channel, but I'm a new subscriber and I have literally binge watched all of your 2018-present vlogs in like a week. I love them so much. Even the ones where you're relaxing or editing at home for the day, I'm still entertained. You've become one of my favorite youtubers for sure ❤
Omg I love your vlogs just the way they are now!!! Don’t feel pressured to be more consistent, life is complicated especially with EDS and all the complications. Those of us that are in the same boat totally get it
I love all your vlogs whenever you are able to put them out. All of us understand that somedays are better then others. Just keep putting out what you can when you can... Next step is 100k and you will have that by the end of the year!!!!
Always a treat to get to see you both, look forward to it. Hope you get to feeling a little more decent real soon. Take care of yourself first, videos last.
Don't push yourself if you don't feel like it. But otherwise i think we all enjoy your vlogs still, cuz we can still see you and don't have to worry that something bad happened to you or something. Also even though you think the vlogs are not as "enjoyable" as before it is still a little documentary of your life, of your feelings, your journey and such. Take a little break if you need it but don't worry about it too much. Do as you think it's better for you. 💕 Get better soon darling 💕
Goodness i feel cruddy when my HR gets over 135, amazed that you cope with 156. Hoping that I can get my doctor to give me regular IV fluids because it does help especially in the summer months
I have been diagnosed with POTS and fibromyalgia at the Age of 17 and fairly recent. I am really insecure about it and bein chronically ill at such a young Age when I have never had as much as a cold but your chanel helps mi so much ❤️
You are such a inspiration for alot of people. I am speaking for myself, I understand about not bloging. When you have to fight daily to have a good day its just too much. You have helped me soo much. Thank you. I will be waiting for your next blog.
I also have POTS and hEDS. Which medications have they tried for managing your POTS? The best ones they use in EDS POTS are beta blockers, Clonidine, Guanfacine, Ivabradine, and Mestinon. Mestinon also helps a lot with gastroparesis, which makes it especially nice. I take Mestinon and Clonidine.
I hope you're having a better day! and please don't apologise for anything! We will always love and support you no matter what, how, or when you upload! ❤️
WooHoo... 72 thousand! Congratulations Amy! Hun, your doing great with your blogs! I wouldn’t change a thing, I think your going to reach 100 by middle summer, if not sooner :) Much love to you, I really admire you by the way. Sure, you have your bad days, and rightfully so..but for the most part, your attitude with all that you deal with every day, and how your so strong minded through it all is just awesome! 🌻
I enjoy your vlogs weather you have them often or every so often. Your health comes first. Tom's such an awesome and suppotive person. I hope your POTS gets better. Thank you for spreading awareness on EDS this month.
Please dont apologize, I look forward to watching your vlogs as you post. I understand how difficult it is to be consistent when battling all the multiple medical issues we have. I spent 8 hours in the infusion center yeaterday for chemotherapy then two units of red blood cells. At one point my Nurse helped me up to the bathroom, I did okay, but when returning to my chair, the POTS acted up amd I nearly passed out. Luckily the Nurse caught me and moved me to the chair. My oncologist came over to see what happened and, saw my pulse way up, my blood pressure fall, and kept me an extra two hours to monitor my vitals. He let me go home with strict bedrest order for 24 hours at least. I have absolutely no energy to do anything today, I couldnt imagine trying to vlog when I feel like this. You are such an inspiration to so many people, please dont forget that. Just take care of yourself and find your balance. It's to easy to over-do things on our good days, only to crash the next. If 30 years of battling these autoimmune diseases and now cancer, has taught me anything, it's to listen very carefully to my body and not to push myself when I shouldnt. Blessings Be 💕
I have been fainting everyday for the last two months. Doctors say it is just due to stress even though I have had multiple er visits. I'm glad I haven't gotten too hurt but I haven't been working for a month. I'm looking into POTS but I am unsure. What you said in the video on how hard it is helped me feel better. Hopefully it goes away soon I bought a fitbit to track my heart rate, it is about 90-100 when resting. It is very annoying when the doctors say I am fine then faint 10 minutes later. I still enjoy your vlogs! But finally, I suggest a youtuber Jessica Kelgren-Fozard, she is deaf, had pots and other things like that, maybe you would like her. ❤
LOOOOVE YOUR CHANNEL!!!!! Please keep doing what you are able to do!! Everyone here for YOU know you struggle. I am happy just to see that smile on your face!!!
Even just affording medications is difficult! I almost cried the other day buying my Ivabradine and other meds. I can't imagine having to buy all the supplies you need xx
I think your vlogs are great! I also think the most important thing is that you do things as you can do them. This vlog clearly shows that there is stuff that you can’t control about your body/illnesses. I don’t know about anyone else, but I know that I’d miss weeks of videos just for you to be and stay healthy.
I absolutely love your vlogs, I honestly don’t mind having vlogs that are put together. As long as you are ok and doing well that’s all that matters! I hope you feeling a bit better now x
Hey Amy! I was wondering how you’ve adapted to having different limitations in your life that you didn’t plan on having. I had a recent (hopefully temporary) loss of a lot of my independence, and I was wondering if there were any specific things you’ve done to adapt to a type of life you didn’t plan on having. Ps your channel brings me hope, thanks for sharing your story and being so real
Your very sweet to be concerned about your subscribers. I think you are doing great with managing everything you do. it’s nice to see you and how you are doing. Don’t feel you have to entertain. I love your art and journaling. You have a very fun, informative channel and it’s one of my favorites 💖✨
I definitely enjoy your vlogs. We understand that you have health issues and having the time or chance to edit isn't always your priority. Taking care of your health is the priority. Having a crazy blood pressure and heart rate is annoying. My husband calls me a zombie because when I get my blood pressure done either the machine doesn't work or the nurse can't hear it. I run low all the time. I have been in the hospital and the dr actually lowered one of my meds because my pressure was like 47 over 30. They kind of freaked out. I felt fine. I think for me mine is around 100 over 60. No one has said anything about having POTS or anything like that. Please take care of yourself and update when you feel better.
Honestly Amy, I am happy just to see 2 minutes of you, just to see that you're ok and doing well. Take your time and only do what you can do, your health and happiness are the most important things. Hope you're feeling much better soon 🤗
Anything you want to share is good with me. I would love to see you everyday, but I understand that is a lot, especially if you are not feeling well. Love you and Tom together, you guys are just so cute!! Hope you get the bp sorted quickly!!
Don't feel bad, this is your life this is what happening so this is what's comes. You are a strong woman and I think that you doing great hope the blood pressure and everything is going well today. Take care
I loved The Act!!!! Watched the last episode last night. Glad you’re enjoying it. I have chronic illnesses, too., and the distraction of a good video series is so nice.
Please don’t feel guilty if your vlogs are different from what they looked like before. I’m jus happy to get a glimpse of your life no matter what that looks like. We love you and just want you to do what works for you. Please don’t feel like you need to change your current blogging style!!!
Try using a skin barrier. I work wound care in a hospital and when people start having reactions to tape or dressings we use that. I dont Think other places know about it
Amy's Life have you tried DuoDerm dressing? I have a port that is always accessed and my skin around it is ridiculously sensitive so my nurse brought me a DuoDerm dressing to put under my tegaderm so that the tegaderm touches the DuoDerm and not my skin. It has changed my life! No joke, my skin was so raw and sore that every time I would have a dressing change I would cry. DuoDerm is awesome and I truly think it might help your skin. :) hope this helps
I can relate to the whole hearing loss and subtitles because I have a hearing aid in one ear but hearing loss in both and my ear is super dodgy so my last hearing aid fitting went really off and I’ve had to stop using it for now. That and I’ve been bed-bound too for at least 3 days so this has really cheered me up!
I personally love the vlogs meshed together. You have so much going on right now, please just focus on you. We care so much for you. The Act is crazy weird, I loved it. 😘 - one of your 70,000 subscribers.
You have so much going on in your life. Never apologize. I enjoy wAtching you and Tom. Miss you when you don’t vlog. Continue doing what you do, when you can. Thank you for always smiling through the good and bad ❤️❤️
I think I might have mentioned this before but since I have sticky tape, and EKG sticky and my pain med doc had me spray the area with albuterol, let it dry then attach your tape ECT. Don't know if that can work for you. It keeps me from rashes out.
Just a question. Are you allergic to latex? And if so does your tegaderm have latex in it? Here in the states they have started making tegaderm without latex which I can use because I found out it was the latex I was reacting to not the tegaderm (I’ve always known I was allergic to latex but didn’t know tegaderm used to be made with latex.)
Did I see chocolate on Tom’s biscuit? That boy loves him some Chocolate!!! Health comes 1st-I love ur smashed together vlogs! If ur struggling with editing several days, would editing each day help?-like editing “as you go”? Just a thought!!
Ive found Independence Australia cheaper than Brightsky-but Brightsky’s customer service is SO much better than Independence Australia-night and day in my experience!! Has the NDIS rolled out in your area yet? I’m not sure of your residency status and how that would affect your application, but it has made an unbelievable, incredible difference to my life. I honestly don’t know how I managed prior to the NDIS. Sure I had to fight for it, and it’s not easy at all the time (I’ve just had to wait nearly 2 years for a wheelchair)-but I now have a yearly “consumables” (disposable/single use products) which helps me SO much. It’s important tho that you budget out your funding properly over the entire year, because once you use up your funding, that’s it!
I have the worst reactions to tegaderm and have hEDS. How did you get diagnosed with MCAD, I’m struggling to get diagnosed with mast cell compared to the other things I’ve been diagnosed with.
Happy with the vlogs! Still very enjoyable! 👍🏼😊 Sorry your POTS is crap. It's soooo exhausting, as is low blood pressure. I thought I was a wimp, but my dad is periodically having low blood pressure (90s/60s, which is my normal LOL), and he is like, I have to lay down! And he can't function well until it comes up again. Of course, I get him fluids and a salty snack, which is enough to get it back up. Thank goodness his issue is easily fixed for now. It's nice to be able to help him.
Midorine is my lifesaver usually but the last two days have been awful, resting pulse of 79, it is so debilitating. I feel for you Amy xx. My doctor won’t allow lines because of the risk of infection is too high (UK spoonie) but I can request a bag of fluid to be infused in hospital. Amy I’m a community nurse and we use Derma s barrier cream wipes/lollipops and find they work better than cavillon, can you get hold of them? Love your vlogs but totally get that you do them as and when you feel well enough. I have days when I can’t even get out of bed so don’t push yourself to the point of making yourself ill. 🥰
I mean we miss seeing you and Tom but your health and well being always come first and we understand that, so you keep doing the best that you can. We will look forward to any videos u upload😊 take care and hope you get that darn pots under control.
Hey Amy. I love watching your channel. I really connect with you because of sharing some of the same conditions. I would like to ask which worked better for you as a way of getting pain killers. Hickman line , normal port or a stomach tube x
Hello!! One possible reason for getting symptomatic when your blood sugar is not that low (for your standards), is that the drop has happened quickly! On the other hand, if it happens slowly, your body can adjust more and you get less symptoms until of course it gets way too low.. so then you feel like death 😅😊
Just wanted to say how thankful I am to have all of you guys in my life! And I love you all so so much! ❤️❤️
❤❤❤
😘
Amy's Life Love you Amy. Please take care. You are a very special lady. Beautiful too. Xx❤️❤️
I love you!!!!!
Your vlogs are fine I actually prefer the multiple days vlogs. It nice to get smaller updates over serise of days on your heath.
Here just to hear your voice & get some comfort. Amy you’ve done so much for me ❤❤ forever in my heart & so very thankful to have your videos packed with information for us chronic illness warriors ❤
When she said ''oh I love that boy" my heart melted I swear
Rip Amy can’t believe your gone fly high
Same 🥺🌸
Aw no!! 🥺 I was just thinking I haven’t had notifications from Amy in ages and I was worried she had passed away. I’m so sad that she actually has! RIP Amy..
Oh on what happened 😢😢😢
@@caradillen3044 she passed away
I love your inconsistency- it’s real life I like it
Amy,
Your health comes first. If you need to put vlogs together, then do it. You have to take care of you. Try not to stress about getting perfect videos. You come first love.
Ray
I have mild POTS and I’m glad you acknowledge that when lying down heart rate almost drops too low. So many people are very open about how high their heart rate goes but not how low. For me when I lie down and especially when I sleep my heart rate drops. When I’m lying down it goes to the low 50’s but when I sleep it drops to the 40’s
I hope your resting in peace Amy 🤍
Man, POTS must really be a pain when it's a bad day. I'm at 152BPM at the hardest part of a spin class. I can't imagine my heart beating that fast just standing up.
Jeneva Griffin I know this was a while ago. Anyways some doctors compare it to copd and congestive heart failure. I believe it was Dr.Blair Grubb who said that.
i have positional orthostatic hypotension. same symptoms of POTS, but different causes and specifics.
first time the doctors tested me, my heart rate went up by 30 just sitting up, 40 standing. getting worse now. i already have a fast heart rate without sitting or standing up. its a pain because (at least for POH) dizziness occurs from a span of instant to 3 minutes. you could pass out as well, which is happening to me. so you could think you're fine, and wake up on the floor wondering what you were last doing. havent broken anything yet, but probably will.
P.O.T.S. can make you pass out sitting. Is hypotension just like pots but with the added high blood pressure? I always walked my dog the same route so my husband knew which direction to find me, if he had to come home.
Oh god I’m hoping now it’s next week your pots has settled down!! Don’t apologise you do so much for us and this community ❤️
Exactly. She does so much for us and awareness. Random suggestion, but how about an un edited vlog. I love bloopers and think it would be fun to watch.
@@sarahnelson4740 I do not have any of her conditions, but yeah, no need for apologies. Just turn 40! and you will so stop caring about BS!
You do not need to apologize to us. Your video today was as enjoyable and interesting. Not that I liked that your BP was wacky, but your blood sugar and orthostatic BP and heart rate. It's encouraging to see you get through stuff because you have to, even though you wanted to be resting in your bed. I look forward to your vlogs, but I would never put pressure on you to do any more than you are able to. No one of your subscribers would ever hold a video against you. You just do what you need to do. We'll manage and follow your IG.
If posting several days as one vlog means you can focus more on your health and taking care of yourself, then I am absolutely ecstatic to watch the vlogs this way! Whatever you need to do to put yourself first we will all support ❤❤❤
I still enjoy your vlogs very much. Whether it’s just a day long one or a multi-day long one
Tom is so darn cute😊 He deserves a little snack. He takes good care of our Amy...so he can have goodies & treats. 🍪🍫 Be blessed you guys!
Get girl! No need to apologize ever!
I live with a few chronic illnesses too, so I was able to watch The Act in like 2 or 3 days. Creepy crazy but it grabbed my attention
You’re not letting anyone down. I kinda like the way you have them. A few days bunched together. 💕 take care of you first! We all understand. 💜POTs sucks. It causes havoc with me.
Amy with everything that you have on your plate and the amount of time you spend just doing what it takes to keep your body running it's amazing that you find time to vlog. So for me I appreciate anything that you put up and will watch it everytime. It never gets old or boring and I just enjoy keeping up with you, Tom and whats going on in your life.
I so agree ❤️
When he says "The Lord has cured you" took me out Lmao
Charise Hunter ahaha 😂
Love watching your Vlogs!!! Hope you are feeling better!! You have a wonderful man, the way he worries, cares, and loves for you!! You have something very special!! Look forward to your next Vlog!! Love from America!!
I'm 17 and I have mild hearing loss in my right ear and I was given a hearing aid last year. I'll admit I haven't been wearing it as much as I should but I find it really helps in my daily life - you shouldn't be scared, worried or anxious to need/ have hearing aids because they really do help ❤️
I like when you put loads of days together. Means I can sit down and really enjoy it rather than just watching a couple of mins at a time. At the end of the day whatever we like you can only do what your mind and body lets you. There's definitely no need to feel guilty about it - we all have our limits. Maybe your worrying unnecessarily? ;)
I love the smushed together vlogs. So we don't get filler just for time. I like the bits of your day you are excited to share!
You two are so cute
She spoke about possibly doing one in another video if people wanted one, so she spoke about it but I don't think she's made one yet 😊
It’s going up this Friday on my main channel ,so look out for it! I can’t wait! ❤️❤️
Thank you so so much for raising so much awareness and being so kind and active in the chronic illness community❤️
Just wanted to say thank you for sharing about POTS! I have a friend who may have POTS and I feel more able and I help her because I knew a little about it! 💕
I miss her!
Don't feel bad if you cannot vlog everyday. You have to remember your health comes first before us subscribers. So if you don't feel like you cannot vlog on any given day then the rest of us can wait. So please don't apologize for something you have no control over.
My pots always get worse when I‘m stressed which is very annoying since I‘m graduating soon. For me the worst symptom besides the dizziness is that I have to sleep so much! Up to 13 hours a day and I am still tired. I love your vlogs❤️
Amy you never have to apologize for not being able to get your vlogs done daily. The way you have been doing them is perfectly fine 😊 I suffer from osteoarthritis, fibromyalgia and chronic fatigue and if I was doing what you do (TH-cam wise), my vlogs would be the same way. I am so impressed that you are able to vlog when you are unwell, it is very inspiring. When I have a bad day I want nothing to do with anyone. And unfortunately of late, that has been how I feel. I so love your vlogs and appreciate all that you share with us ❤. Take care sweetie and give that man of yours a huge hug and a kiss for taking such wonderful care of you 😘 Not many of us that suffer with illness have the support that you do. God Bless you ❤🙏
I don't really remember how I even got to your channel, but I'm a new subscriber and I have literally binge watched all of your 2018-present vlogs in like a week. I love them so much. Even the ones where you're relaxing or editing at home for the day, I'm still entertained. You've become one of my favorite youtubers for sure ❤
Omg I love your vlogs just the way they are now!!! Don’t feel pressured to be more consistent, life is complicated especially with EDS and all the complications. Those of us that are in the same boat totally get it
If you’re reacting to tegadern then try IV 3000. We use that on PICC and PORT dressings when our patients are allergic to tegaderm :)
I love all your vlogs whenever you are able to put them out. All of us understand that somedays are better then others. Just keep putting out what you can when you can... Next step is 100k and you will have that by the end of the year!!!!
Lisa Winters I doubt it but thank you! ❤️
Always a treat to get to see you both, look forward to it. Hope you get to feeling a little more decent real soon. Take care of yourself first, videos last.
Don't push yourself if you don't feel like it. But otherwise i think we all enjoy your vlogs still, cuz we can still see you and don't have to worry that something bad happened to you or something. Also even though you think the vlogs are not as "enjoyable" as before it is still a little documentary of your life, of your feelings, your journey and such. Take a little break if you need it but don't worry about it too much. Do as you think it's better for you. 💕 Get better soon darling 💕
Goodness i feel cruddy when my HR gets over 135, amazed that you cope with 156. Hoping that I can get my doctor to give me regular IV fluids because it does help especially in the summer months
I have been diagnosed with POTS and fibromyalgia at the Age of 17 and fairly recent. I am really insecure about it and bein chronically ill at such a young Age when I have never had as much as a cold but your chanel helps mi so much ❤️
You are such a inspiration for alot of people. I am speaking for myself, I understand about not bloging. When you have to fight daily to have a good day its just too much. You have helped me soo much. Thank you. I will be waiting for your next blog.
I also have POTS and hEDS. Which medications have they tried for managing your POTS? The best ones they use in EDS POTS are beta blockers, Clonidine, Guanfacine, Ivabradine, and Mestinon. Mestinon also helps a lot with gastroparesis, which makes it especially nice. I take Mestinon and Clonidine.
I hope you're having a better day! and please don't apologise for anything! We will always love and support you no matter what, how, or when you upload! ❤️
WooHoo... 72 thousand! Congratulations Amy! Hun, your doing great with your blogs! I wouldn’t change a thing, I think your going to reach 100 by middle summer, if not sooner :)
Much love to you, I really admire you by the way. Sure, you have your bad days, and rightfully so..but for the most part, your attitude with all that you deal with every day, and how your so strong minded through it all is just awesome! 🌻
I actually like the clips strung together like lately
I enjoy your vlogs weather you have them often or every so often. Your health comes first. Tom's such an awesome and suppotive person. I hope your POTS gets better. Thank you for spreading awareness on EDS this month.
I love any vlogs you make. I just love seeing you period
Please dont apologize, I look forward to watching your vlogs as you post. I understand how difficult it is to be consistent when battling all the multiple medical issues we have. I spent 8 hours in the infusion center yeaterday for chemotherapy then two units of red blood cells. At one point my Nurse helped me up to the bathroom, I did okay, but when returning to my chair, the POTS acted up amd I nearly passed out. Luckily the Nurse caught me and moved me to the chair. My oncologist came over to see what happened and, saw my pulse way up, my blood pressure fall, and kept me an extra two hours to monitor my vitals. He let me go home with strict bedrest order for 24 hours at least. I have absolutely no energy to do anything today, I couldnt imagine trying to vlog when I feel like this. You are such an inspiration to so many people, please dont forget that. Just take care of yourself and find your balance. It's to easy to over-do things on our good days, only to crash the next. If 30 years of battling these autoimmune diseases and now cancer, has taught me anything, it's to listen very carefully to my body and not to push myself when I shouldnt. Blessings Be 💕
Amy you need to take care of you,plzz dont take stress we are always here to support you.You are the best
You are so inspiring!!! Thank you for sharing so much of your life with us!❤️❤️❤️💗💗💗
hope your feeling better💓
You and Tom are the strongest people that I’ll ever meet you’ve got each other’s back no matter what and that’s the key to a perfect relationship ❤️
Denby Williams 💖💖💖
So strong 💕 you deserve the world for how sweet you are 😌
I have been fainting everyday for the last two months. Doctors say it is just due to stress even though I have had multiple er visits. I'm glad I haven't gotten too hurt but I haven't been working for a month. I'm looking into POTS but I am unsure. What you said in the video on how hard it is helped me feel better. Hopefully it goes away soon I bought a fitbit to track my heart rate, it is about 90-100 when resting. It is very annoying when the doctors say I am fine then faint 10 minutes later. I still enjoy your vlogs! But finally, I suggest a youtuber Jessica Kelgren-Fozard, she is deaf, had pots and other things like that, maybe you would like her. ❤
LOOOOVE YOUR CHANNEL!!!!! Please keep doing what you are able to do!! Everyone here for YOU know you struggle. I am happy just to see that smile on your face!!!
I actually really enjoy when you combine a few days into one vlog :)
Even just affording medications is difficult! I almost cried the other day buying my Ivabradine and other meds. I can't imagine having to buy all the supplies you need xx
I think your vlogs are great! I also think the most important thing is that you do things as you can do them. This vlog clearly shows that there is stuff that you can’t control about your body/illnesses. I don’t know about anyone else, but I know that I’d miss weeks of videos just for you to be and stay healthy.
I absolutely love your vlogs, I honestly don’t mind having vlogs that are put together. As long as you are ok and doing well that’s all that matters! I hope you feeling a bit better now x
Hey Amy! I was wondering how you’ve adapted to having different limitations in your life that you didn’t plan on having. I had a recent (hopefully temporary) loss of a lot of my independence, and I was wondering if there were any specific things you’ve done to adapt to a type of life you didn’t plan on having.
Ps your channel brings me hope, thanks for sharing your story and being so real
Jaydn Gunnell thank you for the love and support ❤️❤️❤️
Your very sweet to be concerned about your subscribers. I think you are doing great with managing everything you do. it’s nice to see you and how you are doing. Don’t feel you have to entertain. I love your art and journaling. You have a very fun, informative channel and it’s one of my favorites 💖✨
I definitely enjoy your vlogs. We understand that you have health issues and having the time or chance to edit isn't always your priority. Taking care of your health is the priority. Having a crazy blood pressure and heart rate is annoying. My husband calls me a zombie because when I get my blood pressure done either the machine doesn't work or the nurse can't hear it. I run low all the time. I have been in the hospital and the dr actually lowered one of my meds because my pressure was like 47 over 30. They kind of freaked out. I felt fine. I think for me mine is around 100 over 60. No one has said anything about having POTS or anything like that. Please take care of yourself and update when you feel better.
we are your people! you don’t need to apologize- we understand
Honestly Amy, I am happy just to see
2 minutes of you, just to see that you're ok and doing well. Take your time and only do what you can do, your health and happiness are the most important things. Hope you're feeling much better soon 🤗
Anything you want to share is good with me. I would love to see you everyday, but I understand that is a lot, especially if you are not feeling well. Love you and Tom together, you guys are just so cute!! Hope you get the bp sorted quickly!!
Don't feel bad, this is your life this is what happening so this is what's comes. You are a strong woman and I think that you doing great hope the blood pressure and everything is going well today. Take care
We use the same measurement for blood sugar in Canada. In nursing school we learned how to make the conversion for USA values.
I loved The Act!!!! Watched the last episode last night. Glad you’re enjoying it. I have chronic illnesses, too., and the distraction of a good video series is so nice.
Please don’t feel guilty if your vlogs are different from what they looked like before. I’m jus happy to get a glimpse of your life no matter what that looks like. We love you and just want you to do what works for you. Please don’t feel like you need to change your current blogging style!!!
Yesss I love weekly vlogs even with snipits...much more enjoyable ❤️
Thank you for sharing your story and teaching me so much. I think you are brave. I just feel sad when you don't feel good. Get well soon.
I am so sensitive to adhesives! I hate it. Does benedryl help you?
Try using a skin barrier. I work wound care in a hospital and when people start having reactions to tape or dressings we use that. I dont Think other places know about it
Yes benydryl is a life saver! 🙏🏼🙏🏼🙏🏼
Amy's Life have you tried DuoDerm dressing? I have a port that is always accessed and my skin around it is ridiculously sensitive so my nurse brought me a DuoDerm dressing to put under my tegaderm so that the tegaderm touches the DuoDerm and not my skin. It has changed my life! No joke, my skin was so raw and sore that every time I would have a dressing change I would cry. DuoDerm is awesome and I truly think it might help your skin. :) hope this helps
The Act is a great series to watch! And its based on a real life events, even though somethings have been altered.
You have a hard journey but you have such a great attitude!
I can relate to the whole hearing loss and subtitles because I have a hearing aid in one ear but hearing loss in both and my ear is super dodgy so my last hearing aid fitting went really off and I’ve had to stop using it for now. That and I’ve been bed-bound too for at least 3 days so this has really cheered me up!
I personally love the vlogs meshed together. You have so much going on right now, please just focus on you. We care so much for you. The Act is crazy weird, I loved it. 😘 - one of your 70,000 subscribers.
You have so much going on in your life. Never apologize.
I enjoy wAtching you and Tom. Miss you when you don’t vlog. Continue doing what you do, when you can.
Thank you for always smiling through the good and bad ❤️❤️
Love the vlogs! Girl if I dealt with half the stuff you do I doubt I would be able to vlog at all your doing a great job!
I honestly love watching you Amy honest to god I can’t get over how strong minded you are ya never give up no matter what lotta love babes xxx
Currently questioning if I have POTS or something similar and your videos are SO HELPFUL. Thank you!
I think I might have mentioned this before but since I have sticky tape, and EKG sticky and my pain med doc had me spray the area with albuterol, let it dry then attach your tape ECT. Don't know if that can work for you. It keeps me from rashes out.
Have a wonderful day 🦋
I don’t mind your vlogs at all! I still find them 100% interesting!
I love watching you. You bring so much joy and normalcy to having to live differently. I would watch you go to a grocery to shop.
Just a question. Are you allergic to latex? And if so does your tegaderm have latex in it? Here in the states they have started making tegaderm without latex which I can use because I found out it was the latex I was reacting to not the tegaderm (I’ve always known I was allergic to latex but didn’t know tegaderm used to be made with latex.)
"Hope you know traditional Chinese cause that's what the subtitle's gonna be!" - - - - - "I don't KNOOOOOW Chinese!" xD xD you guys crack me up
Did I see chocolate on Tom’s biscuit? That boy loves him some Chocolate!!! Health comes 1st-I love ur smashed together vlogs! If ur struggling with editing several days, would editing each day help?-like editing “as you go”? Just a thought!!
Doesn't matter if you put multiple days in one vlog. I like it :)
Everything happens for a reason, hope you have a good day😍
I’m so sorry you have to go through all of this. I can’t say I understand but I do hope you’re okay ♥️
I’ve seen all but the last episode of “The Act” I’ve really enjoyed it.
Where did you get your fuzzy grey jacket from.. or is it a bath robe I wasn't sure. It looks so soft.
A few videos ago I was gonna ask where you got those beautiful rings but now I know they're your splints🤣 they still look super stylish though
Ive found Independence Australia cheaper than Brightsky-but Brightsky’s customer service is SO much better than Independence Australia-night and day in my experience!! Has the NDIS rolled out in your area yet? I’m not sure of your residency status and how that would affect your application, but it has made an unbelievable, incredible difference to my life. I honestly don’t know how I managed prior to the NDIS. Sure I had to fight for it, and it’s not easy at all the time (I’ve just had to wait nearly 2 years for a wheelchair)-but I now have a yearly “consumables” (disposable/single use products) which helps me SO much. It’s important tho that you budget out your funding properly over the entire year, because once you use up your funding, that’s it!
I love watching anything u put out! Don’t worry about anything! It’s just great to get an update on how u r doing!
I have the worst reactions to tegaderm and have hEDS. How did you get diagnosed with MCAD, I’m struggling to get diagnosed with mast cell compared to the other things I’ve been diagnosed with.
Happy with the vlogs! Still very enjoyable! 👍🏼😊 Sorry your POTS is crap. It's soooo exhausting, as is low blood pressure. I thought I was a wimp, but my dad is periodically having low blood pressure (90s/60s, which is my normal LOL), and he is like, I have to lay down! And he can't function well until it comes up again. Of course, I get him fluids and a salty snack, which is enough to get it back up. Thank goodness his issue is easily fixed for now. It's nice to be able to help him.
Midorine is my lifesaver usually but the last two days have been awful, resting pulse of 79, it is so debilitating. I feel for you Amy xx. My doctor won’t allow lines because of the risk of infection is too high (UK spoonie) but I can request a bag of fluid to be infused in hospital. Amy I’m a community nurse and we use Derma s barrier cream wipes/lollipops and find they work better than cavillon, can you get hold of them? Love your vlogs but totally get that you do them as and when you feel well enough. I have days when I can’t even get out of bed so don’t push yourself to the point of making yourself ill. 🥰
hello amy i hope u are having a ok day
I mean we miss seeing you and Tom but your health and well being always come first and we understand that, so you keep doing the best that you can. We will look forward to any videos u upload😊 take care and hope you get that darn pots under control.
I am going through the diagnosis for POTS now and I’ve been using my Apple Watch to keep an eye on my heart rate. It’s a godsend!
I always love seeing you, but if it's too much for you you need to do what's right for you.💜
Hey Amy. I love watching your channel. I really connect with you because of sharing some of the same conditions. I would like to ask which worked better for you as a way of getting pain killers. Hickman line , normal port or a stomach tube x
Hello!! One possible reason for getting symptomatic when your blood sugar is not that low (for your standards), is that the drop has happened quickly! On the other hand, if it happens slowly, your body can adjust more and you get less symptoms until of course it gets way too low.. so then you feel like death 😅😊
Margarita K ahhh that kinda makes sense actually 😅