Hey! Welcome to my channel! My name is Lindsay & I am a bi, disabled, girly girl that loves adaptive fashion, animals, & crystals. This channel is my creative outlet to raise awareness for invisible disabilities & life with chronic illness & a service dog. I am passionate about sharing my story with the goal of helping others feel less alone, while educating & raising awareness for my conditions. I always try to highlight the good moments of my life while also being honest & open about the hard realities of it as well. Join me & my service dog Simon (& cat Luna) on our journey together with friends & family!
To see more content from me, subscribe to join the famurray & follow me on other social platforms to keep up with my day to day life. Sending all my love and spoons! xoxo
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Just a tip, if your feeling all those stuff those are auras trying to warn you seizure coming on. I get some of those.
I've actually only had postictal (or ictal? unsure, it could've been a focal seizure??) dystonia once in my life but it was awful! Thanks for spreading awareness about this and epilepsy in general! I've always struggled to find people to relate to with my epilepsy, so I was really excited to discover your channel!
❤ keep your head up 🦓 from a fellow warrior 💪
So true. You need a month to recover from a “vacation.” You don’t get a vacation from chronic illness and pain. I also really wish I could send you a private message about a doctor I think could help you with your dystonias, he’s healed many. I also know he doesn’t want me to post his info on platforms for confidentiality purposes.
unicorn roses
The video never does justice for sunsets
Seeing your reality through the good n not so good times has made me so much more aware of how your life is. You're such a warrior showing us how you live your life from moment to moment. I hope you were able to enjoy most of your vacation. Take care sweet Lindsay.💗💗
Gosh I relate hardcore! The tubes the seizures etc. it can be hard to go out and have fun. But we do it to the best of our ability ❤ keep fighting the fight, love!
Thank you for this! It is so real and true! This was so well displayed! Thank you for the education you provide in order for the chronic ill/ disabled community to be better understood! I really truly appreciate the awareness you spread :) Have a great day :) Sending spoons and I hope your trip went well! 💙🩵💙🦓🥄
You’re so pretty
Oh my goodness! I have Dystonia too and some of the others that you have. A lot of health challenges, but you are so strong because of them. Thank you for taking the time out of your day to share. I have progressive generalized dystonia. I am in the process of getting a tendon transfer for my right hand to release it since it has been unusable since I was fifteen. I use a sports chair to get myself around. Take care!
This is beautifully put together, a wonderful way to show your reality. Keep taking great care of yourself so you can keep enjoying each and every day as well! Proud of you! 😘💜✨🥰👑💖🦋💗
Holy sh*t I’ve been wondering what causes my petechiae for years! I never knew it could be related to my EDS! Thank you so much it’s been driving me crazy not knowing what these sometimes permanent red dots that appear after scratching/injury are
When I have episodes ( AMPS) my hands and legs ( very rarely my whole body) lock up. My hands also lock up in weird ways.
I have to wear knee braces because I have some sort of regular thing with my knees/ kneecaps keep dislocating it very painful thooooooooo😢😭🤧🤭🙂😖😣
I have dystonia and it's not very pleasant
I get dystonia...it is not a nice feeling to put it mildly. i also have hEDS but dont get seizures. Xxx
I have something similar that happens with my FND tic disorder (which basically looks like Tourette syndrome but isn’t). It’s not quite like a cramp, but my muscles in my hands arms or legs, and sometimes my face, will tense and/or freeze in a certain way. It can be painful a lot of the time.
I frequently get distonia in my jaw as a side effect to medications. It's *horrible* my jaw visibly twists so hard I've broken or cracked several teeth.
Have you thought about neural link as a possibility?
I think it’s different with chronic vs progressive issues. If you are living with something that will stay pretty similar over time and you are finding ways to save spoons as it were it may be easier to accept using mobility aids. A progressive disability like say multiple sclerosis can often lead to a deterioration of abilities over time and always having to adapt to a new scarier challenge. A Walker will lead to a wheelchair kind of mindset. I don’t think it so much feels like giving up… more like you’re giving up your ability to walk by accepting you need the help.
I have hEDS too and I didn’t know that dystonia was an EDS thing! Thanks for educating :)
My pinky lock on me every now and then lol I had to stop playing the flute because it would lock lol
Fellow HEDS member here!! 🦓My mom (who also has it) gets really locked up in her neck and hands after seizures too. I wouldn’t wish it on anyone- especially not ehlers danlos. *virtual hug* (as I am extremely bad with words)
Oh my God! I need to talk with my Drs! Almost Everytime i get a severe migraine my muscles in my hands/wrists and face freeze up and it's painful if i try to move or if someone tries to open up my hands. I wonder if this is what's going on with me.... Or maybe something else 🤷🏽♀️
That’s a great way to describe it. TY for sharing and educating us all! Hugs girl!
Ouch I used to get that too but I have absent seizures so it’s gotten better thanks for sharing hopefully it gets better ❤love your channel ❤
thanks for sharing!
Hace fun! I hope your body cooperates and you can have a break for a little, you deserve it! 💚💚🥄🥄
I just wanted to come back to comment on this video to let you know that this video is how I found out that I have POTS syndrome. I watched it years ago and knew this is what I had. Unfortunately, I was dismissed by doctors but kept pushing and eventually got to the right doctor that diagnosed me. So thank you for sharing your experiences hun & I hope you are doing well ❤
Ur so pretty!!!!❤
Love you and your family Lindsay. I've never actually had a seizure (that I'm aware) but apparently i am at a higher risk of having them due to my medical conditions. Thank you for being you 🥲🙏🏻❤🥄🥄❤🌼
Wish I could be there ❤
Enjoy your vacation ❤
enjoy your vacation it is much deserved
Have so much fun!!!!
ahhhh!!! looks amazing, hope youre having a good time 💕
That dress looks good on u.❤
i love the dress! ❤❤
I’m apologize but This is a crazy question. Do you get nausea farts?
Wait, what are nausea farts? (Genuine question)
Such a hypocrite. Whining about ableism yet you always automatically assume that any guy with disabilities is automatically a weirdo, creep, and loser.
Think i am also a zebra. So so many things make sense with an EDS + diagnosis. Just need to find the right doctor.
I totally understand this I'm an epileptic and it's hard going through the week as everyone gossips about it and I have barely any friends I pray you feel better girl God bless you and keep you safe and shine his face upon you and give you peace 🕊️ Amen lots of love ❤😢😮😊
I have an EEG test going on right because of my unexplained seizures that I have been having for about four times a month. The wires and everything in general are very itchy and I can’t scratch it!!! I am only 13 so I’m very impatient 😅
Thank you so much for providing us with useful tips. ❤
I have been suffering from nausea since 10 years ..but still can't find a reasion ..every day fight for life
erm- maybe I didn’t 👉👈