Diagnosed with Myalgic Encephalomyelitis in early 2019 I am on a quest to bring knowledge to invisible illnesses and to help those with disabilities not feel alone.
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! 💗
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
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).
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 am so sorry that you’re having such an awful day. My heart goes out to you. I’m so glad you were able to find something to help you smile. Spoonie hug to you!
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 )
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 RU-vid 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.
I have been using a wheelchair for 12 years and these issues, or a lot of them have happened to me. There are two things that bothered me the most. One was while in a store I had asked an employee where something was, he got behind me and pushed me to the isle where it was. I had only been in the chair for about 3 months at that time and was frozen with shock. After he left I went to the manager and told him what happened, the manager said the employee was just trying to help. I asked him if he would like it if someone grabbed him and pulled him to another location without his consent. The manager finally realized what was wrong and said he would talk to his employees. The second was at Walmart. My sister and I were finished shopping and at the checkout. I gave the cashier my money and was waiting for change, the cashier gave my money to my sister. Who was standing in line waiting to checkout. I asked the cashier if my sister was the one that gave the money, she said no but she thought my sister was in charge. I asked her to get a manager. The manager said that the cashier was trying to help, I said if an employee gives my sister my money next time my sister will leave with the money and I’ll wait until the cashier gives me my money. The manager said that was stealing and I replied that if I’m supposed to get change back and her employee gives it to someone else then I am being stolen from. The manager and cashier had no idea that she was my sister, we look nothing alike and were just talking in line
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 .
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.
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
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.
@@MandasMusings That would be very helpful if you don't mind sharing. I was going to do the trial but car rides (even short ones) are too hard for me right now. Very interested in how it turned out for you.
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.
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.
I am convinced that celiac is one of those illnesses that it hits everyone completely differently, I also believe that’s why it’s so hard to get it diagnosed.
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 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.
Great TikTok review video! ❤ It’s so awesome you have a helper to make recording and picking this stuff easier! I’m so jealous! The brain fog makes it so hard to figure this stuff out most of the time. 😅 Keep on going sista! 💪🏿😆
