Blogging, blogs, tumblr, twitter, facebook and so on...

[iNeko]

That's good to know, Sheppey, sometimes it feels like I'm blogging to thin air (although that feeling makes me a bit ramble-y and complacent )

[sheppeyescapee]

mod edit - quote of last post removed as unnecessary I think I like it because it is rather ramble-y. That being said, if I normally have something to say you'll normally get a reply from me on twitter

[lil_miffy]

Iv created a new facebook group to try to get together people who are usign art and media to raise awareness of rare conditions including eds/hms and pots.

Im working on a few awareness films myself including a series of animations for kids with eds (see topic in parents section) and was finding it really hard posting everywhere askign people for photos and help with ideas etc.

I thought that other people would probably be having similar problems yet there will be many people out there who are more than willing to donate bendy photos, give ideas for themes or plots or characters etc. I also wanted to provvide somewhere for people to come to search for awareness media on given conditions, almost like a library. I get frustrated going to youtube and serching for 'eds' to then have to serach through loads of videos to find a really good awareness one to pass onto a friend.

'Zebra Awarenees Media' is actually the name of Im using for my own awareness art and films. I created the facebook group last week but found the new group design on facebook wasnt realy right for what we need so iv created a page instead which allows us to have proper discussions, post photos and videos into folders to share and for artists to use etc. Iv messaged all the members of the original group but if you havent moved over please do. you just need to 'like' the page.

Im hoping that peole will start using the group to ask for suggestions and material for their work as well as to promote their work.

Its for artist, people who have had articles written about their condition, people who write blogs, post videos to youtube either in blog form or as more awareness films, books, and anything that raises awaresness of a raare condition.
It is also for people who just want to help thses artists and people who produce these things as well as people who ar just curious.
Pleaase pop along andsupport my new project and also help out with any of my current film projects i have on the go that are discussed in the discussion section.

http://www.facebook.com/pages/manage/#!/pages/Zebra-Awareness-Media/179023998784113

thanks
cx

[lil_miffy]

I've created a carepage to keep my friends and family up todate and informed in whats going on with my health and millions of hospital appointments.
Carepages is a website that is kind of like a cross between facebook and a blog for people with health problems. You create a profile and can then create your own 'carepage website' where you write about your history of your condition and how you got to where you are today with it. Then you post updates when you want to let people know whats going on.
People who are subscribed to your carepage can then post response back, mainly its just comments of support.

Im finding it really hard now to keep friends up to date with what is going on becuase im seeing so many drs and having so many major problems going on at the same time. Plus it takes so long to explain things to people like what is POTS when im letting them know im going for a test.

You can set privacy so that only people you give permission to can read your page that way every man and his dog who is online can't read it so you can be more detailed if you wish.
Iv created mine because I follow a couple of American EDS friends through their carepages. (its predominantly an american site).
I aslo got fed up of my facebook being EDs updates all the time and wasnt keen on writing about my own personal health stuff on my blog when anyeone can read it.

This way I can be more detailed and talk about stuff that i wouldnt mention on facebook or my blog plus it means i dont have to have hour long discussion with people who switch off after 5 minutes on this weeks hosptial visit.

there are quite a few people with eds/hms, POTs, chiari and other eds related stuff on there so you can follow people's progres in more details. 2 of the girls i follow both have EDS and have very serious GI issues as a result. Its really helped me to follow their progress as my GI issues are getting more serious.

If you want to subscribe to my carepage the link is http://www.carepages.com/carepages/CarrieEDSuk

you can sign up and create your own, or just follow other people at www.carepages.com

[Fiona-Jane]

hi carrie, thanks for posting about your carepages page, i've subscribed!

also tempted to make one of my own, it's a good site to send people when they enquire about how i've been doing... gets a bit frustrating to keep repeating myself like a parrot!


and if anyone isn't yet friends with me on facebook and wants to be my facebook friend my name is Fiona-Jane Kelly. i'm the only person on facebook with my name so easy to find

fi xx

[DeeNJai]

Fiona-Jane I have added you to my facebook too. I have a carepage too.

http://www.carepages.com/carepages/fibrodee1971

Dee

[Fiona-Jane]

hiya all,

just a quick message before i clean up the cat vomit in the hallway and go to bed....

i've started a new blog: http://fjkellyedsetc.blogspot.com i'm new to the whole blogging thing so be gentle!


fi xx

[Rosie]

Hi all

ANyone playing Gardens of Time on facebook? I need some more neighbours and would love to hear from you. Please PM me.

Rosie

[loosebones]

The HMSA is on twitter...is this legit? They're called 'HMSAcharity'

sorry Rosie I don't play this game

[Eloise]

I am addicted to smurfs - anyone want to be my neighbour via Facebook? Sorry, but I don't play any of he other games on Facebook or anywhere.

[Lou661]

Hi all

ANyone playing Gardens of Time on facebook? I need some more neighbours and would love to hear from you. Please PM me.

Rosie

I do...feel free to add me, my facegeek page is linked on my profile here

Louise

[steph]

Hi all,
If anyone's got a blogspot, it'd be great if you could follow me so I can follow you back - the address is www.livelifeloving.blogspot.com and I would love to get to know more HMS/EDSers

Best wishes,
Steph xx

[steph]

Hey everyone,
I'll be glad if this post is even read as I'm sure similar stuff has been written before! But, I was wondering if anyone here is on blogspot (or wants to sign up!) and wants to connect with me? I'm 17 with EDS III (hypermobility type) and would really like to get to know other peoples' stories and experiences with hypermobile life! You can find me on www.livelifeloving.blogspot.com and my YouTube channel is http://www.youtube.com/user/Stephanie6410?feature=mhee and I've posted (and will do some more) videos of my experiences so far.

I don't know what it is, maybe it's that I feel alone in a lot of this as I only have few friends through forums with HMS/EDS but would love to know more people, especially young people - male or female, I'd love to chat

Thanks for reading and hope to hear from you soon,
Steph xx

[sheppeyescapee]

I do have a blogspot but it is really infrequently posted on. So many ideas, but never get around to actually posting on it

[Mooncat]

Dear All,

I have a blog http://danceinjuryrecovery.blogspot.com/ which is all about hypermobility, dance and physiotherapy - it is very long!

I have a Facebook Page http://www.facebook.com/home.php?ref=ho ... 7008618886