Vlogging with EDS: I GOT MY STAPLES OUT! New Glasses, and My New Endocrinologist | Week 91
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- Опубліковано 29 лип 2018
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I understand the fear of the primary care doctor fear as a young person. I have so many horror stories from military doctors telling my mom that I had anxiety OR I was a hypochondriac which is probably why I wasn’t given a probable diagnose of EDS at 37 and an official diagnosis at 39.
The issues you raised about steroids, steroid dependence, and endocrinology are pretty fascinating. Maybe one day you can do one of your awesome medical nerd videos about this issue where you go into more detail. I love those!
YES! Thank you so much Christina for the shoutout on my shirts! Y’all, there are like 6-7 shirts and tank tops available now in my store, and there is another shirt that is in the design phase. It should be released this week. I definitely had to get inventive when thinking of the design concepts. If you have any questions about the shirts, feel free t message me on Instagram @danielbwest
I’ve noticed more and more people with EDS who are having adrenal issues, and its interesting how Chiari, EDS and other related conditions connect back to adrenal insufficiency. Little did I know I had adrenal insufficiency well before I was Dxd back in February, and those days of falling asleep in class weren’t because I was just tired. I’ll have to see if their are any classes because resources are limited and hard to find. I’m so glad you found an endocrinologist that you like.
You found your ring splints :)
Can you tell me where, also looking for splints ;-)
Isn’t it great when you find an expert who is humble enough to listen to you? I’m so glad for you, Christina xxxxxxxx
When you were talking about the meal prepping place contacting you, I busted out laughing.
💘 the enthusiasm!! I sent your channel to a lady w/ EDS bcuz i think you show the difference a life can be by being your own advocate & saying "I want the best life I can have".
Prescription sunglasses were one of the best choices I have made for my eyes! Especially if you're in the car a lot like you are
It's so funny to watch your eyebrows talking when you have your sunglasses on :D
Love your attitude :)
Ha ha. Loved your morning person impression. I totally relate to the morning person sentiments, I'm a night owl all the way. Love your videos! Glad you are feeling better!
im really excited for the next review vid! watching your vids and crocheting has become my favorite relax time
Ooh those glasses are so pretty on you they really suit you and I love how simple they are xx
I’m learning such a lot of medical stuff from watching you! I’ve always been a medical nerd but I knew nothing at all about the adrenal glands! Those glasses really suit you. Hope you have a lovely time with your cousins. Love from England. X
I love your green polish! You have such great individual style!
Lard of mercy glad you finally getting some very deep answer to your symptoms. The frames fit so much better on you and pleasant to look at you wearing them. Staples out finally the after math looks very neat just like a train track🤣 notice how much stronger your getting your on the right track it seems yes you will get set backs but your learning how to deal with them. Waking up early you do get more done I guess lols as long as you feel reasonable good. Keep going my dear your looking good! 😊🇬🇧
thank you so much for the glasses review, once I get my prescription im so onto that!!! I really appreciate your honesty and lack of monetary gain from all this too.
Thank you so much for sharing that code!!! I am in desperate need of glasses. My insurance covered the exam, but won't cover the glasses. My husband just lost his job, and it was starting to look like I was just going to have to deal with not being able to see. You are an angel 💓💓💓
SOOO excited for the spoonie product tests!!
I've actually been on and off the glasses website for a week now. I've been needing a new pair because my percription changed. The ones you have I've been staring at for a week wondering if I should spend the money. After seeing them on you pretty sure I'm going to get them. I think they have a BOGO sale going on right now too.
i have the exact same cortisol issue!!!!! ❤️ just one more reason to enjoy watching ya... in addition to the likely diagnosis of EDS!
I have an appointment tomorrow to discuss potential adrenal issues due to my symptoms and reactions to steroids, among other things. This was helpful!!!
Hehe I love you sweetheart xxxx you are hilarious, and that totally how morning people speak!! Xxxxx
Hey! You found your ring splints! Yay you!!
I’ve been needing some prescription sunglasses THANK YOU!!!
I had no Idea how important the hormones are. I have IIH and I have Hoshmotos Thyroiditis. I need to have myself checked! I have let it go cause I have been sick with the IIH. Thank you, so much for telling us about this. You are so Strong and Positive and Love your Rocks!! If you ever feel like making another one it would mean the world to me! I'm have a Lumbar Shunt put in and I'm so nervous and scared! Thanks for sharing as always. Hugs💜
Lisa from Michigan!
Our EDS son would love that shirt!
You are a beautiful , amazing woman and I love your vlogs!!
Multiple Sclerosis is still a mystery to most doctors , unless it’s in some book or journal entry they just reject my theories . My hormones are all screwed up from histamine often surges causing me to break out in head to toes HIVES 🤨 . Your poor mom , so many things to keep straight .
LaDonna Wipf Her Mother is a doll but I’m sure if others were put in just such a situation with our children we’d rise above also . It sounds like you and I have a similar M.S. progression , my mind is liken to an elderly person but I can still get around . I have huge amount of PAIN though , that wears me out terribly. Nice to meet you 😉 !
yay new vlog!!!
I've used that glasses website before!! My bf wears glasses and that site is so nice
I have no adrenal function. It’s CAH caused adrenal insufficiency, but everyone calls it Addison’s cause that’s the label people know. Anyways, I hear you about the cortisol and the emergency solucortef. I always have a bottle on my person, just like my epi-pen. I had to learn a ton on my own on the internet though. I have know more about my disease and how to manage it for years now. My doctors ask me questions. I have had to tell the emts on the way to the hospital to give me my stress cortisol, something they should know. It’s a problem, your right. And it was so validating you said something! Thank you!! Oh, and hi, I’m new to watching your channel and am enjoying learning from another spoonie 🙂
I'm super bummed. I live only 1.5 hours from the conference but I can't make it there. Financially it's out out reach, and physically...I'm barely keeping myself together the way it is at home! I see Dr. Rosenbaum and Dr. Henderson on Monday about decompression and fusion surgery, so hope is on the way!!
Love watching your vlogs, pleased you got your staples out ouch, also that your feeling alot better, go enjoy your time with your cousins, say hi to your fam, you made me laugh when you said Cristina was bk at night lol, not the bit we're your feeding tube gave you a rude awakening though, anyway your inspirational to everyone o and I love you sun flowers by the way, looking forward to seeing your next vlog love to you allx
I am sure you were told, but just for my peace of mind I will say something. lol My Mother took Cortf for an inactive adrenal gland. She got cataracts from using the steroid. I am sure you know all that already. But I felt I needed to say something too. :) I am glad things are going better for you!
I've been meaning to get new glasses for my wedding (right now I have thick black rims and dark eyes, that isn't really bridal) but I've felt it would be a waste of money. So this endorsement came at the best time, I'm definitely going to see if I can't find something more "bridal" ❤️ I'm so superblind I can't even wear contacts 🙃
I'm so sad I can't go to the conference! I'm always in California visiting family in August. I'm finally on the right side of the country and yet only during the conference do I go back haha
Yay Texas themed merch!
Ok those glasses are SO CUTE, very grandma chic
She’s so pretty and pleasant... it sucks that someone so nice has to deal with so much pain and discomfort.
I just came off florinef bc it made me sweat ALL THE TIME and I felt no different but since coming off my heart has been pretty fluttery and I’m getting dizzy more. Ugh
What are the symptoms of adrenal problems? I only know of adrenal fatigue and weight gain.
I am glad Lauren is better from the strep.
I hope you have a good time at the conference-thingy.
Much love ❤
Watching this while putting ribs back in place
Sleeping Christina strikes again! Hope this is a one off as doesn't sound like the best way to wake up 🤞🏻
We didn't have the finances to make it to the conference this year.. it's added to the goal list!!
Omg I love the glasses and I’m going to the conference too! I’m sooo excited. I’m staying at the hotel it’s being held at. I’m going with my friends who’s also acting my aid for the weekend so we are calling her my service Elise, we should totally try and meet up
I got this really cool game to play that I’m totally excited to find some people to play with 🤪
I'm going to be at the conference and hotel, too!!!
When they thought I had lupus iwas on high doses of prednisone what should I look for for adrenal disease
getting up at 8am is early !? no that's sleeping in !! getting up at 5 or 6am is early !!
Morning people have posh accents 🤣
xo
You look prettier without the glasses
Christina that sounded like a gunshot
What’s your prescription?
Geez I thought that the "doctors not trusting patients" happens only in my country.. it's been 13 years.. still waiting for my diagnosis...
Glasses look awesome !, Any of them would look perfect on you ;)):))))
Wait, I have big adrenaline pick since years, it'm completely high when it's happen. it's dangerous ? I was never bothered by that, especially since I knew it's because of EDS. I'm scared now
💪🏼👍
I know your spine is completely fused, but I'm really curious can you turn your head at all?
it’s not primary addison’s disease... addison’s disease is primary adrenal insufficiency. there is secondary adrenal insufficiency and addison’s is not secondary adrenal insufficiency. they’re not interchangeable...
unfortunately the #1 cause of secondary adrenal insufficiency is because they were put on meds that had steroids in them and their body stopped making cortisol as a result... either that is inhaled steroids for asthma, etc... 😔 and unfortunately a lot of doctors don’t realize they are putting patients at risk when they put patients in these meds... 😔 and even worse, they will send patients for testing for adrenal insufficiency while on these meds not having any idea that the testing is invalid because of the medication they are on...
Please help... where do you find your finger splints. My thumb keeps slipping out and it’s killing me. Who makes your splints?
I’m sorry I didn’t say Hi... forgive me. I saw your splint and was like, that’s it!!! That splint would hold my thumb in place. I have a horrible splint on and can’t do anything. I take it off and then whoop there goes my thumb.
Hope your day is good to you love!
Google silver ring splints. More importantly, see an occupational therapist to see if you can get a prescription for them and possibly insurance coverage.
Doorkob! Doorkob?
Is anyone else scared that Siri responded with „searching for pretty serious stuff“ what Christina said the word pretty BEFORE the sounds that could be interpreted as „Siri“??? That means that the iPhone was listening before. So is it always listening?
Jaja Hollada Well of course it is always listening! How else would it be able to recognize when someone says "Siri"
HolaQuizas Creepy. 🤭
I just had a gastroenterologist cancel an appointment on me (four days before it) after I waited for three months. I'm pretty pissed because the next open appointment wasn't until October. My digestive issues really need to be checked out; this is so infuriating.
Larkin ugh hate it when that happens 😓 Bless you 💓💓
I always thought that was spelled subluxed. The more you know.
You are right lol It seems I made a spelling error therd
Girl, your life makes me tired! Lol