genetic appt chronic illness vlog: formal Ehlers Danlos diagnosis & i had 2 seizures
Вставка
- Опубліковано 25 жов 2024
- Join me, my fiance, momma, and my part time service dog for a day in my life with #chronicillness (POTS, Gastroparesis, Ehlers Danlos, & more) going to my geneticist for a follow up appointment, confirming my Hypermobile #ehlersdanlos diagnosis, doing some testing, and more!
Open for more! ♡
♡
♡
♡
♡
Give this video a thumbs up for more like this!
SUBSCRIBE to join the Famurray :D
♡ Instagram:
/ chronically.lindsay
♡ TikTok:
/ chronically.lindsay
Watch in HD! To see more videos from me like, comment, and subscribe! Comment below if you have any video requests!
Disclaimer: This video is not sponsored. All opinions and actions are my own. Some links and discount codes are affiliate links. This video is for educational purposes; and to raise awareness for chronic illness/pots/gastroparesis/picc line/service dog life. Please consult with a doctor or nurse for medical advice.
Follow me on social networks so we can be friends!
♡ Instagram:
/ chronically.lindsay
♡ TikTok:
/ chronically.lindsay
♡Merch:
www.customized...
♡ Snapchat: Follow me on here for day to day updates!
/ disabledandhot
♡ Pinterest:
/ chronicallylindsay
Shop SlickChicks! @slickchicksonline
Link- slickchicksonl...
Use my Discount Code- "LINDSAY20"
Shop Halara!:
Code: lindsay22 15% off
halara.link/s/1...
Rare Patient Voice: Sign Up (make $$)
www.rarepatien...
Shop Spoonie Things Boutique:
Use code "LINDSAY20" for 20% off your order!
spooniethingsb...
Shop BinasButtonsnmore:
Use code "LINDSAY10" for 10% off your order!
/ binasbuttonsnmore
www.etsy.com/s...
Shop @careandwear new arm access top!
Shop the top here: bit.ly/31fquH7
Use discount code "LINDSAY20" for 20% off your order!
Music: Provided by UA-cam and iMovie Library
Business Inquires: Email me at chronicallylindsaym@gmail.com with Business Inquiry in the subject line.
FAQ:
How old am I: 24
Where did I go to college: Towson University Alumni 2021
What I used to film- Nikon D5500 / Vlog- Sony a5000 / iPhone 13
What I used to edit- iMovie
Voiceovers- Ice Blue Snowball Microphone
I'm going to say it again the one thing I love about this channel is that she goes to a lot of chronic pain and everyday is something new but yet she gives us a beautiful smile and give us amazing content no matter how much pain she's in or if she's having a bad day
Thank you so much, I really appreciate that more than I can express!! I really try to stay as upbeat as I can and provide interesting informative content to raise awareness and spread as much love as possible 🫶🥹❤️ thank you for your kindness & watching + supporting my content!
I find that my own POTS is more symptomatic when I am in sensory overload
Watching the part about the machine that checks your bone density I was like "this is so loud I would meltdown and probably struggle so much with my POTS" and then you said your pulse kept rising despite being sat down and Simon's deep pressure so I thought I would mention it, in case it helps
I wear earplugs that don't have metal in it to help when I have to get scans
wow you, your fiancé, and simon are the most beautiful family. i love seeing how sweet y’all are with simon, he is such a handsome boy. i also love how you find things to love and to smile about despite being chronically ill. ik it’s hard but its really encouraging to see as someone who is also chronically ill. also welcome to the zebra family! while you have always been one of us it’s now official! 🦓❤ i did have a question, what causes your seizures? is it epilepsy or another seizure disorder? i have fnd and get LOTS of seizures from it and was curious if a service dog could help with them. anyways i love your content it always brightens my day to know that there are other people out there with similar issues to me who are still smiling and i pray you will continue to 🤍🤍
This comment is so sweet thank you so much for your support and kindness!! It means the world to me!! ❤️🦓 so I have a combination of PNES + epileptic seizures, I’ve been on seizure meds for over 3 years now I believe and they stabilized me for a while, I just have issues with breakthroughs a lot bc of my hEDS/absorption issues that come with. So mr man only alerts to my epileptic seizures as of right now- minus my absence ones he doesn’t, I have friends though who have service dogs to help with their FND! There are definitely response tasks and different ways an sd could help with FND for sure I’m just not sure exactly about seizure alert, alerts can be hard to teach if a dog doesn’t have the natural scent for it, scent training can be done as well sometimes but yeah! Just wanted to give ya a little more info ❤️ thanks so much for watching and your kind words! Makes my day that much more brighter! Sending you all the love and spoons! 🥄🥄❤️
I have cEDS, POTS and Epilepsy. I can validate your feelings on the seizures and the POTS. I have a Rollator walker that I use for long distance trips but I mostly use my walking stick.
This hand getting painfully stuck from holding something (at the end of your video) happens to me, too. I wasn't sure whether it was related to hEDS or Reynauds or some kind of arthritis or what. It seems like a cramp, so probably hEDS or maybe even nutrition related?? Oh the endless mysteries.
Okay thank you!!! I’m glad I’m not the only one!! It really is endless mysteries, I’ve had one doctor tell me it’s dystonia caused by hEDS, so I think that’s what it was but I’m not positive def gonna try to look more into it see if I can prevent things like that!
When I finally get to the hand specialist occupational therapists I will ask about it and report back :) it may be a while I am rationing my appointment energy, you know how it is.
My hands also get locked like that. I have cervical dystonia and thought about dystonia a while back but was unsure! I really do think it is dystonia especially after seeing other people with same symptoms after maintaining a posture for a while. This happens to me when holding a fork and when holding weights! Fascinating!!! Xxx
@@charlottestandage2765 I have cEDS and my fingers will lock up when I’m holding something for a long period of time. Especially if it’s a pen or pencil or even my phone.
amazing vidoe looking forward can not wait You’re back yay I’m so glad to see a another vlog from you and I was the one who has been following you and your videos and your journey for years rock this stand behind you all time pretty stunning queens shorter hair
where did u get your service dog packpack? i love the color and i have been looking for one like that.
Amazing Video i enjoy very cool Love it you are so pretty beautiful stunning Queen Rock this Take Care yourself stay Safe Love your content and Videos Highlight of The day Happy you are Back i miss . Stand behind you all time 😅❤❤❤
I have an appt at Kennedy Krieger in january. were they nice/helpful?
They were definitely really nice and super helpful with getting me diagnosed and finding good physical therapists etc!! They were very nice and helpful it’s just hard to get in/get an appt but they are amazing! I hope they are helpful for you as well!! Good luck w your appt in January 🫶🥄🩷
thx@@ChronicallyLindsay
I hope you see this because I am a conically ill because of one of my diagnosis and I still love to do every thing that normal person does im 18 years old and on words along with different diagnosis I’m still living life i have lots of different Medical diagnosis that keeps on appearing as I get older 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 heal from sugars and they hade me taking bad tasting medicine in the hospital and outside of the hospital for after sugars medicine doesn't taste good at home and hospital visits to get things done
Haven't you claimed to have an Eds diagnosis for years???
Nope, only since june/July 2022 is when I started talking about it cuz that was when I was finally able to get in to see a geneticist after my POTS clinic had referred me and they gave me the tentative hEDS diagnosis but wanted to do genetic testing to confirm it was hEDS and not another sub type. So it’s been a little over a year (this was filmed in July) and was finally confirmed by the genetic results which took months of waiting to finish since they scan through all 20,000 something of my dna + parents and then more waiting to get this appointment where I got the formalized results. We were suspect of hEDS since about 2021 and had other doctors bring it up to me in POTS clinic + my gi specialist mentioned it to me as well but the waitlist times during the pandemic kept me from getting my “formal” diagnosis until July this year. Getting a formal diagnosis is difficult and takes a LOT of time, energy, $$, resources, and waiting! Many ppl with ehlers Danlos have similar experiences taking a long time to be able to get in and see the right doctors to give us the formal diagnosis, that’s part of why I’m sharing my story to show that It is hard to get a formal diagnosis because wait times and waitlists are longer than ever. But I hope that helps to explain! :)
Self diagnosis is valid
@@pegaseg70 so so true!! It’s a timely and expensive process that not everyone has time & access too!
@@pegaseg70 mm yeah no that's what medical professionals and testing exist for (physical health). And in psych classes they literally tell you not to diagnose yourself so
@@dizzypancreaspumpi mean, my own EDS, POTS, endometriosis, autism, ADHD, OCD, mTBI, eating disorders, gastroparesis bouts were missed for a decade or more depending on which even though I kept going to professionnals, being hospitalised, etc.
I had to bring each individual diagnosis myself after putting tons of research into it
Self diagnosis is more than valid, often times it is more right than what a doctor tells you, because you spend a lot of time researching
I have poured more than 200h into EDS research, which is more time than I have spent into gp appointments
But yeah I know they tell you not to self diagnose in psych class, for several reasons, one of them being that to get there, you have to be privileged enough to go to school. Which is a big issue because psychology and psychiatry are rooted in privilege, white supremacy, patriarchy, etc. and are often written and taught by neurotypical people. So when you actually come into contact with patients, there is a huge gap. I was living with so little money I still don't know how I managed and my psych told me that I should go on holiday to heal. With what money?! I was also told I just needed to try to focus more or that I should stop being scared of sounds even though hyperacousis/hypersenses are not being anxious, it is an actual pain in your brain
And a lot of people especially in the US do not have the money to go get diagnosed
Anyway, I could go on and on
Point is, self diagnosis is more than valid.