It's all like "deja vu" for me! even the patellafemoral syndrome and so on... Now I am into SHIT with youthcare because of my lovely daughter! They are not believing any stuff from Ehlers Danlos, although it was diagnosed officially by serval doctors! Now they are willing to stick the label "Asperger Syndrome, Autism" on our heads. Wich I refuse ofcourse to believe!
Autism has nothing to do with sub- & dislocations and so on!
This is one place where you can be an advocate to others, using your wisdom and experience to help young people cope with an EDS diagnosis. Come to think of it, you already are by posting this blog.
When surgery left me in brutal pain, everyone thought I had a "nervous breakdown", the A student bound for a PhD or MD suddenly dropping out of college. Many family and friends still do because they do not understand chronic pain as a disease, and still doubt that my pain is real, 26 years later.
Wow...this is kinda messing with my head, lol. Everyone says we look "way too alike" and I agree =S I also have EDS (they can't decide whether it's Type 1 or Type 3, but that's medicine for you, lol), and I've had an ED since age 11, which I link to the EDS. I did choir for years, but now I focus on visual art (mostly drawing and painting).
Bah, "kids will be kids" indeed. The kids in my class invented "Emma Germs" and decided I was contagious.
SHUT UP!!! I was in school to be a choir director before I was stricken with my cervical disc degeneration and other defects!! You and me got lots in common!! I was 2nd chair all state in hs.
ANd our hairs is the same!!!!!!!!!!!!! What the heck? Check out my youtube channel..it's all about make up..lol! :)
Hey Kerrilyn! Glad to see another video update. I am really excited for you to be getting Shadow soon! I am sorry to hear about the hard times you had when you were younger. You are too sweet to offer support to the rest of us with EDS..all that support and empathy is right back at ya! I hope things are going well for you.
I know what is like i went throw the something when i found out i had eds . I lost all my friends when i told them that i had eds. so i am here for you sweetie.
All that testing, and not really knowing what's wrong is a horrible thing, especially when it takes years to get an accurate diagnosis and you have to deal with doubting friends, family and doctors.
Thanks for posting your video. It's very helpful.
deb310red 1 month ago
@deb310red Glad you liked it!
DarkWaterfall 1 month ago
It's all like "deja vu" for me! even the patellafemoral syndrome and so on... Now I am into SHIT with youthcare because of my lovely daughter! They are not believing any stuff from Ehlers Danlos, although it was diagnosed officially by serval doctors! Now they are willing to stick the label "Asperger Syndrome, Autism" on our heads. Wich I refuse ofcourse to believe!
Autism has nothing to do with sub- & dislocations and so on!
Hug from Belgium xxx karine
Tezotvoorwoorden 10 months ago
your so cute
CRAZOproductions 1 year ago
you`re hot!
bojannnn09 1 year ago
i feel so sorry for you ...seriously ...
i hope u get a real cure for your problem ....dont give up
mohammedhosen696 1 year ago
"Oh it's growing pains"
"No, we were mistaken, you have Rheumatoid Arthritis"
"No, we were mistaken again, you have EDS Type III"
¬¬
kandinsky51 2 years ago
This is one place where you can be an advocate to others, using your wisdom and experience to help young people cope with an EDS diagnosis. Come to think of it, you already are by posting this blog.
When surgery left me in brutal pain, everyone thought I had a "nervous breakdown", the A student bound for a PhD or MD suddenly dropping out of college. Many family and friends still do because they do not understand chronic pain as a disease, and still doubt that my pain is real, 26 years later.
longlakeshore 2 years ago
sorry it took so long to get back to you, i only have intermittant internet up here at NEADS, and it's going great!!! Of course you can friend me!
DarkWaterfall 2 years ago
Wow...this is kinda messing with my head, lol. Everyone says we look "way too alike" and I agree =S I also have EDS (they can't decide whether it's Type 1 or Type 3, but that's medicine for you, lol), and I've had an ED since age 11, which I link to the EDS. I did choir for years, but now I focus on visual art (mostly drawing and painting).
Bah, "kids will be kids" indeed. The kids in my class invented "Emma Germs" and decided I was contagious.
Permission to friend you? I'd so love to chat =]
xpsykoxpixiex 2 years ago
Patellafemoral syndrome :)
ReineDeLaSeine14 2 years ago
That's the one!!!! thanks! Thank you all for your kind words. It means so much!
DarkWaterfall 2 years ago
SHUT UP!!! I was in school to be a choir director before I was stricken with my cervical disc degeneration and other defects!! You and me got lots in common!! I was 2nd chair all state in hs.
ANd our hairs is the same!!!!!!!!!!!!! What the heck? Check out my youtube channel..it's all about make up..lol! :)
luv,
jessie
MadMadamJess 2 years ago
Hey Kerrilyn! Glad to see another video update. I am really excited for you to be getting Shadow soon! I am sorry to hear about the hard times you had when you were younger. You are too sweet to offer support to the rest of us with EDS..all that support and empathy is right back at ya! I hope things are going well for you.
crazylegz610 2 years ago
I know what is like i went throw the something when i found out i had eds . I lost all my friends when i told them that i had eds. so i am here for you sweetie.
EDSGIRL021 2 years ago
All that testing, and not really knowing what's wrong is a horrible thing, especially when it takes years to get an accurate diagnosis and you have to deal with doubting friends, family and doctors.
m00nbugg 2 years ago