Twitch,
You don't have to write an essay. Feel free to write as much or as little as you wish. You don't even have to participate in every month. You can participate as your condition allows or even just as you see fit. We would love to get whatever we can out of you. ;) Everyone will have plenty of notice to write their post on the specified topic. I have already started working on possibilities for publishing the article that will include the links to everyone's post.
Twitch just gave me a great tip. Apparently February 29th is Rare Diseases Day. http://www.rarediseaseday.org/ This would be the PERFECT day to host our first blog carnival. I am figuring that the first month of the carnival will focus on explaining who we are and why we need our voices heard. In order to give us a strong start I would like to have us follow the same format for this first month, like each of the blog authors are being interviewed by the Chiari Blog Carnival. I am totally open to suggestions. Please don't feel like I am mandating anything. I am merely trying to kick start our blog carnival. Eventually I would like to broach topics like coping with symptoms, dealing with unsupportive doctors/family members, etc. If you have any ideas for questions this first month or a topic of future months please please please tell me. If anyone else would like to jump in and help me with this project I would welcome it! Please send me your email via message here or email me at ■■■■■■■■■■■■■■■■■ so I can send the post information to everyone at once via email. I am working on questions for Chiari Carnival 1 now and will send out via email ASAP. Everyone will need to have their blog post published to their own blog by noon EST February 28th.
I'll add your blog:)
I posted on facebook on my page: http://facebook.com/MyChiariLife asking if anyone had a Chiari blog and if they were interested in joining a blog carnival. I linked this post and told them to comment their interest and blog information here. So we may have more :)
shalunya said:
Twitch just gave me a great tip. Apparently February 29th is Rare Diseases Day. http://www.rarediseaseday.org/ This would be the PERFECT day to host our first blog carnival. I am figuring that the first month of the carnival will focus on explaining who we are and why we need our voices heard. In order to give us a strong start I would like to have us follow the same format for this first month, like each of the blog authors are being interviewed by the Chiari Blog Carnival. I am totally open to suggestions. Please don't feel like I am mandating anything. I am merely trying to kick start our blog carnival. Eventually I would like to broach topics like coping with symptoms, dealing with unsupportive doctors/family members, etc. If you have any ideas for questions this first month or a topic of future months please please please tell me. If anyone else would like to jump in and help me with this project I would welcome it! Please send me your email via message here or email me at shalunya@live.com so I can send the post information to everyone at once via email. I am working on questions for Chiari Carnival 1 now and will send out via email ASAP. Everyone will need to have their blog post published to their own blog by noon EST February 28th.
Thanks Alicia, As of right now we are up to 10 participants! I have two FB group pages that are letting me publish the carnival and ConquerChiari.org is also going to let us publicize there too! :D So far so good!!! Thanks for the help I really appreciate it!!!
You're welcome:) Thats awesome that Conqer chiari is going to publicize it!!
I have a page on caring bridge http://caringbridge.org/landondruery. It's nice to be able to share your thoughts and feelings with others going through the same things.
Friendly reminder that the blog carnival posts need to be published tomorrow. If you need anything or want to join just let me know! :)
Thanks for the reminder! I need to write mine up!
I have a personal blog that isn't about Chiari (It's about me, I'm a pastor, music lover, photographer, etc), but I have numerous posts tagged "Molly & Chiari" to chronicle my wife's struggle since 2007. We've been contacted by many who were diagnosed, found the blog, went back to the beginning and read through all the posts. I'm so glad the effort to detail what she (and we) have endured has been a blessing to others.
By the way, I've also "live-blogged" through her two surgeries with time-stamps and explanations of what she has gone through and what I've gone through as her spouse. A pretty unique thing to have chronicled, I've found out. Anyway, that's what I have for you. :)
Here's my latest post from two days ago.
Thanks! I'll add it to the resources:)
Ok I'll add that next to your link:)
Hey chiari-ans, I started a blog about my life and my journey to diagnosis. I do swear often, so keep that in mind if things like that offend you, and it's a tumblr, meaning it's a multimedia blog and is not just text based. Feel free to check it out!
Here is mine... http://mylifeasachiarian.blogspot.com/ I just started it, so I am slowly getting it up and running.
I have a blog but am not the best at doing it every day....actually pretty sucky at it..I am trying to get better at it cause it seems to help get everything out. http://christinemullen.blogspot.com/
Thanks Twitch!!!
Twitch said:
YAY CURSING!!! LOL
Love the Tina Fey GIF. Hilarious.
And Happy Birthday. :)
Lissa said:Hey chiari-ans, I started a blog about my life and my journey to diagnosis. I do swear often, so keep that in mind if things like that offend you, and it's a tumblr, meaning it's a multimedia blog and is not just text based. Feel free to check it out!
Updated the resourcs with all the new blogs! Thanks everyone:)
Our Chiari Blog Carnival has been added to the support page on the conquerchiari website http://www.conquerchiari.org/support/resources.html. It's great to see that an idea born here is continuing to make a further impact on the chiari community.
If anyone is interested in contributing to the March blog carnival I haven't yet published it and would love to add your submissions.
That's great!!
I'm emailing you my blog now:)