Відео

Great info. Thanks.

My name is kelly and i have lots of different Medical diagnosis that keeps on appearing as I get older I’m 17 going on 18 so I have too take 3 medicine prescribe to me lots of vitamins for different reasons that i have been in the hospital for many different reasons and some i have to stay in the hospital to hello from sugars and all tips of stuff and normal people hospital things too they hade me taking bad tasting medicine in the hospital and out of the hospital but not at the moment i am not so i get it doesn't taste good at home after i left the hospital from days after sugars so i get it you will find the help that you need but you will need to keep on having hope and sharing you storys

I'm scared I have/will develop something like this, I had a thyroid ultrascan which confirmed an enlarged thyroid. There's been no follow up since and it's hard to get an appointment especially as I have multiple follow ups to do. My fatigue is more malaise now, it's worse than it's ever been. My nodules aren't lumpy, nothing that's noticeable but around the time of my scan I did complain about the left side feeling numb. I really hope it's nothing and that I get a follow up appointment soon

I was prescribed propranalol after complaining about my palpitations, the doctor passed it off as anxiety and still does, but I have long covid and I'm pretty sure I developed POTS along the way, my doctor's and physio just haven't given me firm answers as to the reason for my ongoing chest pains, shortness of breathe and rapid heart beat. Propranolol 10mg deffo helped with the palpitations. I'm now doing my own research on POTS and natural remedies because no one else is going to help me with that. This video was to the point and very useful, thank you!

Nice video, on my wheelchair, I use a Wheelchair Wallaby Catch All. Its basically a net that attaches to the bottom frame of the wheelchair that you can carry stuff around in, the particular one I use has a zipper so I can store my parking placard, wheelchair gloves or whatever else I may need. That might be difficult for some people if they have a tall frame or can't reach that far down. I also have a wooden tray I use, it goes over my lap and attaches to my armrests with bungee cords.

I’m late commenting to this video but I just found your channel! I have had POTS symptoms for at least 10 years and diagnosed 2 years ago after it hit the fan after covid. I have been to an autonomic specialist at Vanderbilt. The day of my autonomics testing, my TTT was 29 BPM. I completely failed the Valvasa testing. She said they look at symptoms AND test results. She said everyday and moment is different. It’s constant ebb and flow. They don’t do the nitroglycerin there for a normal TTT. My local PCP also specializes in POTS and he gets so angry when nitro is given. It’s useless and it increases the chances of people coding during the test. I had it during my first TTT that wasn’t at Vandy and it was the most horrible experience of my life. It’s not for everyone though.

Yikes, I have POTS too but my supine heart rate is in the 60's or 70's and it jumps up into the low 100's (maybe as high as 120-130) which still makes me feel quite light headed but I couldn't imagine my heart heart jumping up over 150 just from standing up. I'm glad the propranolol is helping you because I'm just starting mine today and I'm trying to psyche myself by watching others' videos to see how it worked for them. Best of luck to you!

Magnetic eyeliner is a wild concept! I'm having a hard time imagining how that is even possible? My eyes get so irritated when I try to wash off mascara- I can never seem to fully get it off and the little specs get it my eyes and it uses up so much energy. That's great to hear that laser hair removal is working out for you! <3 I can't leave the house enough to do it, but not having to shave for months sounds like such an energy saver!!! I've been curious about those at home devices but am a bit skeptical of their efficacy.

I appreciate the video. I am going to have a partial thyroidectomy in two months (it's 27 June 2024 now, and the procedure is scheduled for 22 August .) So, really appreciated it. From Wichita, Kansas, USA, have a Great Day!!

I'm also face blind. I explain that looking at faces for me is like looking at clouds for most people. Your brain tries to "finish" the picture so the cloud might turn into a frog, or a shark, or a flower, or sometimes it remains as it is. Covid was a disaster in that regard cause all people wearing masks became one person. I also had multiple occasions where I believed I was in a good relationship with a person only to find out later they were two different people. And it took me between three weeks to almost a year to figure it out and it was awkward as hell cause you don't know what info belonged to whom😂.

This is super useful I didn't even know this was something you could do thank you!

Happy pricking 🤣

I'm partial faceblind and it sucks. In real kife but also in movies. I often don't understand them, if there are to many main characters look alike (look alike means they have short dark hair). My brother as we were kids thought I was stupid, because he had to explain the storyline for me. In daily life I recognize people by their walking style, bikes and accessories (like bagpacks, jewelery etc.)

I’ve read about this before.🙃 That must drive you crazy! It’s not to that level, but with my brain fog and poor memory I don’t recognize people or I can’t remember names, it will be at the tip of my tongue or no where in sight, or I come up with a random name I guess is theirs. My brother just had a graduation party, and I was able to come out a bit later to lay down outside so people could come over and say hi, and my neighbors from my families lake house showed up who are like grandparents to me, and I didn’t recognize them because I’m used to seeing them there. It’s gotten really bad recently and I’m a little concerned.😅😶‍🌫️😬

Crazy people

No way I'm face blind too! I recognise people by the hair, clothes, gait ect but it's not fool proof! I often don't recognise people till they start talking to me😂

I’ve wanted to get laser hair removal because if I let the hair on my legs grow after not shaving, it hurts me. I don’t know if I could handle getting it done and I don’t know if there’s anyone around me who does it, also the cost. I have seen at home hair removal tools but I don’t know how I’d react to that.😅 I put sunscreen on the other day and immediately got a rash on my leg, I never know how I will react with my MCAS.

Feeling this so much. Same. Sending hugs.

Does it work? I have two boxes of alcohol pads just waiting to be sniffed!! 😂

Do you know why ME usually get worse? In my case at the start of the symptoms I was housebound for some weeks (it was in 2018), from november 2023 it has been a total disaster, I am able to stay out of bed only 5/6 hours and I always feel like having an endless flu😢 From 2018 to 2022 I had long times symptoms-free. I'm "healthy", I mean I haven't others health problems. I fear this will torture me for the rest of my life (I am 32 now). It's like a daily mourning for the life I'm loosing and nothing is working, not even a bit! I'm really scared and sad, I don't know what to do!😢 I'm so broken that I think I don't want to keep going like this anymore...what is the point if it's only going to be worse ans worse?😢 I'm so scared...

I have moderate hEDS, POTS and MCAS. I got my eyebrows professionally microbladed, did professional hair removal under my arms and I get my hair professionally straightened every 6 months. Every extra minute of sleep makes a huge difference for me, so being able to look presentable without spending too much time on self care is key!

I also find the CPRG migraine meds always thin out my hair.

I couldn't get magnetic lashes to work well either and it's so fidly 😴 l get vegan lashes applied that stay on for several months and that does me for that. Side note haven't shaved for over 10 years and I love being a mammal with my little curlies. Gives me more energy to attend to my head hair to grow fuller.. bloody pots 😅

I’m going to look into doing laser hair removal at home. Just need to research it.

Great video! I do at home IPL hair removal on my whole body as I have PCOS, and it's such an intense workout! The beginning phases will take longer and I need to use it more frequently, so I'm just trying to push through until I can move down to the faster setting which is less exhausting and less frequent!

I am not a pro bc I lost so much hair that it cut itself, it used to be twice as long

thank you so much! this is so helpful!!

I literally take Tylenol, does nothing at max dose, ibuprofen nothin. I wish one of them did something

Yep, me.

I just wanna say I admire your strength to continue on, even making videos when you always feel so terrible. My health is really bad as well and I have similar conditions to you, and I do relate so this isn’t coming from someone being like “oh you’re so strong” I know you have no choice but to be strong, because I’m in the same boat. But I just admire that you make these videos even though you feel terrible because I’ve been wanting to start doing stuff like that but I just can’t bring myself to mostly due to I just don’t do well with social stuff and it feels social to me lol but also because my symptoms are too bad to figure out how I’d do it. Hope you’re having a better day than you typically do. ❤

Helo sister need seriously help for my daughter for self catherator.plz how can i contact u??i am from nepal.

Helo sister need help for my daughter for self catherator.plz how can i contact u??i am from nepal.

Wow your so beautiful hope you can get better one day when solutions are found and can let your light be seen more in the world. 🥴

I'll be going into surgery next week on Friday to have one side of my thyroid removed.

I would recommend you yt channels like - pain free you, cfs recovery, cfs health

My knees go backwards. And basically all.of these you've mentioned. Also, does your pinkie stick out

Completely agree. There isn’t really much of payoff for keeping them. On the contrary. And I also don’t think people need to suffer to become empathetic, good people. I think it’s human nature to be caring and empathetic. I sometimes feel suffering gets bit glorified in our society. Like that there is always a positive payoff. And I don’t mean that you shouldn’t look for the positive things in a bad situation, but it just doesn’t make the bad situation positive.

Completely agree. There isn’t really much of payoff for keeping them. On the contrary.

Hi Georgina! I hope things aren't doing too bad! 😢 May I ask you on what medications you are/were and if you have some kind of therapy for your disease? If so, are they working a bit? Are there actually some strategies to overcome some of these symphtoms? I'm currently studying to became a nurse, second year. Thank you if you want and can answer, if you are not too sick and tired! Sending you the best wishes and greetings from Italy❤😊

The USA is not strict about carers. Mine is a practicing alcoholic. In the USA you can hire and interview your own caregivers or find a company to hire them. So I have a company find them.

Are you getting fluids through and IV or something? That could really help! Although getting a doctor to agree is something that is REALLY hard and so exhausting

Georgina, your advice for hEDS-havers to get a PopSocket changed my life! Thanks for sharing 'rest not quit' too. I recently came across the 'slow living' mindset, i.e. accepting yourself as good enough just for Being, not Doing (although with chronic pain Being/Resting can be, like you say, suffering). I've started asking myself what my cavewoman ancestor would do in my situation - she might rest and sulk but probably wouldn't feel guilty about her pain or unproductivity. I hope your situation gets better and that you can find peace in the place you're in <3

SO TRUE I just sleep when I'm in pain, why would I stay awake when I can dream? (I get pain even in my dreams)

Gotta lock in

I haven’t vomited in almost 3 years. Whenever someone else is sick I RUN AWAY and cover my ears. #emetophobia

Hi. What’s your daily dosage of Ketotifen? Thanks!

You need a better doctor

Thank you so much

Can I do it without pulse oximeter? Like manually counting for 1 min

Can i do it without pulse oximeter