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We definitely need doctors like Harry Weston around

Recently found your videos, I feel these feelings so hard. ಠ_ಠ. Im recently diagnosed Ehlers-Danlos Syndrome after 10+ years of symptoms and ups and downs with no answers. Its gotten so bad, my assessment for PT the head Therapist who owns it said to me these exact words: "Sooo...everywhere I'm pressing hurts? Oh my, your left rib cage is floating away from your spine... UHHH, your MCL and LCL are basically doing nothing and your knee joint moves WAY too much. I'm scared you're going to dislocate this..." (as he's pretty easily manipulating my knee joint side to side with little to no resistance) I went to the store yesterday and I LITERALLY experienced everything in this video minus the elevator stuff. I don't mind the little old ladies who think my son is cute riding on the electric shopping scooter with me and helping grab stuff off the shelf, it's the Karens who are out to police the handicapped world eyeballing me and judging whether or not I "qualify" I could go without. I spent 10 years feeling guilty about having a handicapped parking placard and plates, using the electric scooters at stores etc.. Since my diagnosis ALL those guilty feelings are gone and Im 100% comfortable parking where is best for me, the looks I can brush off most of the time. But doctors or specialists who don't believe me or minimize what i'm going through hurt the worst. I drove 2 1/2 hours one way to see a Rheumatologist who spent less than 15 minutes with me total in the appointment, questioned the validity of my need for walking aids, said I'd never get better and never see a cure in my lifetime, then told me "You'll likely never get disability, Stop using the walker and canes, get a job and stay optimistic". Meanwhile I can't drive, do household or outdoor chores, reach down to tie regular shoes, stand for longer than 5 minutes at a time, can't walk very far even with mobility aids, can't sit/lay for too long and if I twist/bend/grab/lift/push/pull beyond what I should Im liable to suffer a subluxation or worse dislocations.

I clean in the morning when I have the first energy boost I have another surge of energy around 8 pm as I am a night owl sleeping most the day in between in frequent cat naps followed by awake but not enough energy to do anything. Then around 8 to about 10 I have a small energy boost followed by two hours of mental energy but to tired to do much going to bed about midnight sleeping until 9 or 10 in the morning when I have a hour maybe two energy and repeating. These times are approximate as it veries daily but that is approximately my average day. I found watching tv and making myself work on commercials during an energy boost time works the best for me. When commercial is over I rest until the next commercial and repeat until I don’t feel like getting up anymore and stopping.

Thank you 😢

Thank you! I don’t leave the house much at all, but I have fun putting on makeup and I feel better, so I think putting it on just for me (well, and the others in the household, lol) is a good reason to use it. When I have the energy! Would you do everything (like the eye shadow) the same on an older face (50 ish)

I just stumbled upon this channel, but I hope you're doing great now! ❤ You seem to be a lovely person :) As a person with chronic conditions I know that life can be hard to manage, but it's incredible that you've found something that both brings you joy and fits your needs. Stay safe, you are lovely, hope you have a good day! 💗

CFS sound so incredibly serious just how do Doctors manage to diagnosis it

One correction as a person with tics , they often start between the age of 5-10 but they can start before or after as long that it’s before the age of 18

dr Weston is a pediatrician who actually cares about his friends and patients

Doctor Bud only cares about making money from wealthy patients

Where did you get your mri done?

I can't imagine how awful it would be to KNOW there is something wrong with you and be told that there's not by doctors. They treated Dorothy like she was crazy when it was the fact that she was being treated that way that was driving her nuts. What an absolute nightmare. And people are really treated like this. People who are indeed sick and they're either ignored or flat out mocked. Unbearable.

Well, now I know there's a place in Denver to get an upright MRI, if and when the time comes. Randomly getting snow instead of rain in Denver in the spring (at least I'm guessing it was spring, based on the upload date)? Totally unheard of!🤪 From a fellow Rocky Mountain dweller.

One thing I always bring is my powerbank - there have been (a select few rare, because everything is always fully charged before I leave) times where I needed it en route when flying, and I often need it at my destination, plus it's the only way to charge anything when there's no electricity available. I don't travel with prescription bottles, because in the U.S. you don't need to; instead, I have a (actually 7, but I only travel with one) big 4x/day pill box where each day pops out and there's a case for the whole thing so that it all stays together when traveling, and I just keep out the current day's box (which prevents running into the issue of where to put the next morning's pills when packing up to leave); any additional days over 7 each go in snack size ziplocs (I have a lot of meds, and I've discovered that snack size fits and squishes the best in the packing cube that I use for them), one for each day, labeled with the date (1-31), and I reuse the bags one trip to the next. I've also gotten stuck overnight on a layover because of cancellations, so I always bring one extra day's worth of meds in case it happens again. On the subject of getting stuck overnight, I always shower the night before I leave, and I pack one change of clothes and only basic toiletries (hairbrush, flossers, toothbrush, toothpaste, lotion, chapstick; I don't wear makeup, and I generally shower every other day) in case I get stuck overnight again; all the other clothes, toiletries, meds, etc., that I'll need are already at my destination, as well as a near-complete set of joint supports/braces, and a SmartDrive charger, all of which massively cuts down on how much I have to travel with (my mom is awesome for letting me keep that stuff at her and my dad's house). I always preboard because of my wheelchair, and I also went ahead and finally got myself TSA PreCheck 2 1/2 years ago, which saves me a lot of time at security, since I don't have to take anything off of me or out of my bag(s), and I don't have to get out of my chair but still get to skip the patdown. On the plane, because my legs are so short, I have to use a foot swing in order for my joints to not kill, even on the flight where only half the time is spent actually in the air (the other half is spent taxiing).

What brand are the earplugs? Those sound like something I need, since high pitch noises above a certain Hz are seizure triggers for me.

What if the psychiatrist is pill shaming.. Is there any laws we can use

hello, i have both m.e .and fibromagyia,mark

This!! I was literally just telling my husband it would be easier if my disabilities were visible. I’ve had almost 100 stroke type episodes in less than a year and I still push myself and don’t allow myself the grace I’d give to someone else because I don’t “look sick”. I’m slowly learning to love myself through disabilities and chronic pain/illness and allow this new life I have to settle in and get acquainted with❤

(I hope you see my comment!). Today has been an awful medical day. This cheered me up so much and gave me much needed relief through laughing❤❤❤

The episode feels even better with you reacting and validating everything that happened. It's sad thinking most of you pprobably went through the same thing (not being taken seriously by the doctors, etc )

It happens to people in the blindness community too, so don’t feel like

Right I mean when my sister and I were younger my grandma would use the Store scooter and I’d be using my white cane because I’m legally blind and my sister would be walking with us and people when let’s see my grandma using the store scooter and me using my weight would just dareand my sister would be like take a picture last longer

Very helpful video. I've recently become an ambulatory user , also due to severe pain after a short amount of walking (just a few metres now). It's helping me to see vids like this.

I'm an ambulatory disabled person, who variously uses a walking stick, rollator walker, or a wheelchair, as mobility aids. Your video just showed up in my UA-cam recommendations, today, Easter Saturday 2024. 10:11 Gem trying to reach supermarket shelves. In a typical Australian supermarket, the shelf Gem is having trouble reaching, is merely an upper middle height shelf. There's usually another 2 shelves above that in supermarkets here. Groceries on those upper shelves can barely reachable by able bodied folks, if the stock is towards the back of the top shelf. 10:18 Counter top heights at most buffets and bars are odds on to be eye level if not higher. What's ridiculous about cruises is that most of the major global cruise lines are USAian corporations, yet no-one has tried to force those corporations to make their cruise ships, properly ADA compliant. Hiring someone in a wheelchair during design, is a waste of time. the corpor-rat bean counters will kill any real accessible design recommendations coming from such a person. So it has to come from force of Law being applied on the corporations, to make their corporate properties, which cruise liners really are, be _REALLY_ ADA compliant. 13:31 The cost of the equipment we need, and getting on the government disability systems. Here in Australia, if a disabled person is not on the National Disability Insurance Scheme (NDIS), the price tags on essential equipment puts it out of reach. But as the NDIS is a government operated program, to get equipment, a disabled person has to be able to submit supporting evidence from medical specialists as to why the equipment is necessary, and how this equipment will help them and how it will work in them achieving their stated goals in their NDIS Plan. And applications usually takes several months to get approved, if at all. it took me three application attempts to get onto the NDIS. Early to mid 2018, mid 2019, and mid to late 2020. The sheer number of reports I had to complete and file, for each attempt was exhausting and frustrating. I _really_ hope you've been successful in your application. 20:12 What you could also see in Gem's video is the camber of, supposedly, level footpaths. Fighting camber to keep your wheelchair going straight, is exhausting. 24:44 Accessible that isn't. Japanese hotels take this one step further. _ALL_ bathrooms in the hotels have a bath tub, including the accessible rooms. I've not seen any with a separate roll-in shower stall. Some only have an over-bath shower. Others have the entire bathroom as a wet room, with just a shower curtain to stop the shower water getting everywhere in the bathroom. And then there's Virgin Voyages, with 2 types of 'disabled accessible' rooms on the ships. One type has proper wheelchair width accessible doorways. The other is meant for ambulatory disabled, and has narrower able bodied width doorways. How not nice of them to be so discriminatory. 27:32 Use what you need. And if your mobility aids needs may vary throughout a day, make sure you plan ahead to have them with you. Getting past stubborn pride is always a problem. I've been there as well. Trying to get by with only a rollator walker and walking stick, while it was becoming progressively harder and harder to manage to do things like grocery shopping unassisted. I had to realise that and contact a support organization, for assistance to do grocery shopping.

It’s blood boiling 🥵.I don’t have these issues but I’m heartbroken that people aren’t believed by their Doctors sometimes

I love mystery diagnosis, i hadn't seen this episode. Thanks for your insights, Amanda

Lots of people are brutal, but the most that hurt me, is that people I know for many many times don’t watch me anymore or scared to talk to me, and I’m a person that to love to chatting, but I’m feeling sometimes me very lonely…. Big Hugh from Holland .

Thank you for sharing this story! I’m a fan of Busath and I’m glad to know a bit more about Tourette’s now.

Susan Harris, who wrote those and many other episodes, was diagnosed with CFS and she included some of her struggles into the episodes. She wasn't able to continue with the Golden Girls because of her disease.

This is really helpful, gets so frustrating seeing other people able to socialise more than me, thanks

Turn to Jesus He loves you, He is the healer of the body And savior of the soul, There is True Hope in Jesus, God protects Psalms 91, He is the God of miracles Acts 2:21 And everyone who calls on the name of the Lord will be saved Jesus alone saves Trust Him with your salvation John 3:16 1 Corinthians 15 1-4 Moreover Brethren, i declare unto you the gospel which i preached unto you, which also ye have received, and with wherein ye stand By which also ye are saved, if you keep in memory what i preached unto you, unless ye have believed in vain, For i delivered unto you first of all that which i also received, how that Christ died for our sins according to the scriptures And that He was buried, and that He rose again the third day according to the scriptures, Take care

Sometimes the problem is that people oversleep too. Its another way to feel very tired and sick all the time .

9:46 scanning noises start

Love the video! I have ME with possible FMS. But one question, where did you find informative that ME and CFS may be different? I cant find thst anywhere. From everything I've read and been told ME/CFS ARE the same disease, they renamed it Myalgic Encephalomyelitis. But Chronic fatigue and ME/CFS are different, chronic fatigue is a symptom of many illnesses and disease.

I love this two part episode so much! I knew from the start that Dorothy had something wrong with her. She couldn’t even work thanks to how terrible she felt, so clearly her quality of life wasn’t good. It’s a shame that so many people with CFS have to deal with being dismissed by doctors who can’t simply admit that they don’t know all the answers. But my favourite part had to be when Dorothy spoke to the arrogant doctor in the restaurant and even his wife stood up against all of his bull crap.

As a new, ambulatory wheelchair user in the US without insurance, I started out with a generic, second hand wheelchair that was also left over from a relative previously needing it. My 'new' chair that should arrive today actually, I had to get used off of ebay. One day I hope to have a custom one, but sometimes you gotta make due, and since I am able to push myself, even just the upgrade in chair will make a HUGE difference in my quality of life. Hell, even this old cruddy one did that, lol! It's good to hear from other Ambulatory wheelchair users, I get sick of being made to feel like I have to be broken beyond a certain point before I'm 'allowed' to be in one, I guess. And I know that shouldn't bother me, or even cross my mind. I know I need it, my Doctor knows I need it, but being 'young', EVERYBODY stares, oh my god. Sorry, I've only been in a chair for about a month and a half, so all of this is still so new to me, and I'm learning to cope with the silly things. Like you, I tried putting it off so long... and then one day I couldn't. I shouldn't have waited, I did way more damage to myself because of it.

How did the trial end?

Wow, super sketch hospital.

Has low carb helped?

I ❤Starbucks pink drink.

Wow. My sister sent me this You Tube to watch. I slept until 1pm and got up wanting to take a nap. I don’t have fever or sore throat like Dorothy described, but the rest is accurate. I’ve been thinking that I’m just getting lazy. Last year I had to take a week off of work because I couldn’t think. I felt like there was no way I could even make it there. I’ve owned a seasonal Kayak rental business for years. I’ve run it myself for lack of employees. I just lost over 30 pounds and have been going to a gym to get ready for the season again. But, here I am feeling drained. My nurse practitioner said it could possibly be effects from the Covid vaccines. She has me on LDN 4mg. I’ve already doubled it and not sure if stepping it up will help. We are just trying. I did not have Covid and am 68. Don’t even tell me that it’s just my age. Last year on a 90 degree day- I sent out over 90 kayakers in one day. Come on.

Stop Pill Shaming : ua-cam.com/users/shortsUMpFqL3lR1U?feature=share

It's interesting how celiac affected his development. I have celiac as well, but was otherwise normal as a child. Never had any GI symptoms until I was 17, got diagnosed at 20.

At 17:00 is Doctor Harry Weston, who is the star character of the GG spin off Empty Nest, which why he's a lot nicer that the previous doctors who blow Dorothy off.

I am literally in middle of being diagnosed with cfs today... it was a relief to have an understanding of what's going on.

I don’t ever remember my night terrors that’s what I was always told by doctors is a big difference between them and nightmares. When I wake up I’m just left with a fight or flight feeling and it scares people around me and I’m ashamed because nothing I can do about it and when people always have a story about how I slept it gets taxing it’s like oh no what did I do this time? I just want it to go away it’s debilitating but my dr is trying to find me a place for sleep study I’m hopeful I know Jesus will make a way ❤

I don’t think I’ve watched this episode before: spot on commentary. So sad we are still dealing with these same attitudes all these years later. It took me years to find a decent medical team. So thankful but so much unnecessary suffering along the way

I had my excision surgery in 2020. My endo was really bad. They even found it near my diaphragm. I was finally able to breathe deeply for the first time in a long time and was able to move freely. I had so much horrible inflammation that I felt constantly sick and horribly fatigued and like I needed to go to the er every day (cycle or not didn’t matter for me). So so thankful for my surgeon. It was cutting off blood supply and without surgery I wouldn’t have made it much longer.

These are great tips