RA groups on facebook

[Joe M]

There are pages and pages of different RA groups on Facebook, and I was wondering if anyone had one in particular they could recommend or one that is open to AP and such?  I haven't joined one yet and thought I'd ask here first.

Thanks
Joe

[tbird2340]

I did a search for one a few weeks back… I think only one of them even had a post related to AP so I didn't bother joining any.. If you find one, post it here..

Thanks, Tom

[tainabell]

I used to be part of a group on Yahoo, but I never used it.  I don't technically have “RA”, just nonspecific inflammatory arthritis, so I always felt a little bit out of the loop on those groups.  Also, the Yahoo pages are formatted in a really confusing way.  I like the format of the RBF page the best so far.  (Go team!)

[tbird2340]

Yea the yahoo groups REALLY suck (not the information, but the layout).. If you subscribe / sign up you get an email for every post which is a lot easier then trying to follow what's going on via the site..

[Suzanne]

You lose your anonymity on Facebook, so I think that is why a lot of people choose not to participate.  Wouldn't an employer be able to search you and find out your medical condition?

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Kim]

[user=18]Suzanne[/user] wrote:

You lose your anonymity on Facebook, so I think that is why a lot of people choose not to participate.  Wouldn't an employer be able to search you and find out your medical condition?

Suzanne, you are always the voice of reason.  I bet your kids don't get away with anything! 😉

I'm so glad to hear the “little tadpole” is doing so well.  (For the newbies, Suzanne called her daughter that because she was scarfing down her lemon-flavored fish oil pills and started smelling a little fishy.)

[Joe M]

Hi Suzanne,

You have to give permission to someone to see your profile.  The process works as such:

Someone finds your name, and they send you a note asking to be your friend.  If you accept, they have access to your profile.  If you decline, they can still only see your name.  There are many ways to politely decline, such as ” I only use this for family”.

I think you are confusing Facebook with MySpace, where anyone can view your “space” at any time.

Joe

[Suzanne]

[user=20]Joe M[/user] wrote:

Hi Suzanne,

You have to give permission to someone to see your profile.  The process works as such:

Someone finds your name, and they send you a note asking to be your friend.  If you accept, they have access to your profile.  If you decline, they can still only see your name.  There are many ways to politely decline, such as ” I only use this for family”.

I think you are confusing Facebook with MySpace, where anyone can view your “space” at any time.

Joe

I think you can set up your MySpace as private, too – anybody sees the main page, but for other stuff you have to be 'friends'.

But Joe, even if an employer couldn't view your profile, anyone in the RA Facebook group would have, at least, your real name – more if they became 'friends'.  I know the Arthritis Foundation started a group, but everybody who joined the first day bailed out when they saw the amount of info it exposed.

Kim, my older daughter wanted a Facebook page because she needed yet one more way to stay in touch with her friends (telephone, e-mail, cellphone, and texting were not enough LOL).  She showed it to me, and I made her change the settings and take her picture down.   She thought I was crazy.  Then the next day some boy she went to preschool with ten years ago who moved out of state asked to be her 'friend'!  She didn't even know who he was!  But his mom gets some notification every time someone from our city joins and she recognized the name. 

My daughter said her friends' moms join, too, so they can check their daughter's pages.  Not me!  I have run into three high school friends recently who say that is all they do – look up old classmates on Facebook every night.  Okay…..um, why?????

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[patchoulee]

If you join a group that does not mean that any one can see your profile your settings are still in affect and you don't have to post your whole health story just to join the group. I actually found my best friend from the 10th grade who moved away and we lost touch via facebook and I am now the proud god mother of her fist daughter.

My gradmonther is 67 years old and has a facebook page and loves it she found all kinds of old workmates and friends she always wondered what happend to but lost touch..

Why would anyone want one because it's the wave of the future and a great way to find old friends you lost touch with I actually can't think of anyone in my life including my parents and all their friends who don't use facebook. It's great for groups for research and just general communcation other then long distance calling. Most of my friends are in Europe and I am in Canada and I can talk to them for free see all their wedding, baby pictures etc. If people ask to be your friend and you don't want them to see your stuff you either ignore the request or decline. Why would you not want to find old friends I looked up everyone of my old classmates it was AWESOME?????

Joe I am on an REALLY active great rheumatic illness group on facebook that has about 7500 members I can't remember the wording I will look it up on facebook ( blocked at work) and let you know.. 

 

 

 

[user=18]Suzanne[/user] wrote:

[user=20]Joe M[/user] wrote:

Hi Suzanne,

You have to give permission to someone to see your profile.  The process works as such:

Someone finds your name, and they send you a note asking to be your friend.  If you accept, they have access to your profile.  If you decline, they can still only see your name.  There are many ways to politely decline, such as ” I only use this for family”.

I think you are confusing Facebook with MySpace, where anyone can view your “space” at any time.

Joe

I think you can set up your MySpace as private, too – anybody sees the main page, but for other stuff you have to be 'friends'.

But Joe, even if an employer couldn't view your profile, anyone in the RA Facebook group would have, at least, your real name – more if they became 'friends'.  I know the Arthritis Foundation started a group, but everybody who joined the first day bailed out when they saw the amount of info it exposed.

Kim, my older daughter wanted a Facebook page because she needed yet one more way to stay in touch with her friends (telephone, e-mail, cellphone, and texting were not enough LOL).  She showed it to me, and I made her change the settings and take her picture down.   She thought I was crazy.  Then the next day some boy she went to preschool with ten years ago who moved out of state asked to be her 'friend'!  She didn't even know who he was!  But his mom gets some notification every time someone from our city joins and she recognized the name. 

My daughter said her friends' moms join, too, so they can check their daughter's pages.  Not me!  I have run into three high school friends recently who say that is all they do – look up old classmates on Facebook every night.  Okay…..um, why?????

[tainabell]

Facebook is awesome.  You always have the option to say “No” or even just ignore someone if they ask you to friend them and you don't know who the heck they are.  I do it on a regular basis.  It took me awhile to truly “get it” but now that I do, I love it.  It is a way to keep up with your friends without having specifically e-mail them, etc.  I keep in touch with my friends from Ireland so much better now – I feel like they are back in my life, after a long time apart.   

[Joe M]

OK Suzanne, I'll put you down as not having a preference 😀

[Joe M]

Thanks Patchoulee, I'll keep an eye out for it.

[Suzanne]

[user=310]patchoulee[/user] wrote:

Why would anyone want one because it's the wave of the future and a great way to find old friends you lost touch with I actually can't think of anyone in my life including my parents and all their friends who don't use facebook. It's great for groups for research and just general communcation other then long distance calling. Most of my friends are in Europe and I am in Canada and I can talk to them for free see all their wedding, baby pictures etc. If people ask to be your friend and you don't want them to see your stuff you either ignore the request or decline. Why would you not want to find old friends I looked up everyone of my old classmates it was AWESOME?????

 

 

 

  I have run into three high school friends recently who say that is all they do – look up old classmates on Facebook every night.  Okay…..um, why?????

My “why???” was about my three friends who say looking up old classmates is “all” they do “every night”.  Facebook all you like however you like, but looking up high school classmates exclusively every night, night after night, baffles me.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[bonnielou]

I love facebook — I am the head of IT at a college so I need to know what our students are doing — and now that adults can use it (it originally required you to have a ' .edu' email address to participate) it has really exploded.

It's fun to connect with long lost classmates and colleagues. It's easy to share photos and life's activities. But I have also been contacted by folks I really don't want in my life. The privacy settings make it easy to block out those people.

I would like to know which group you like Patchoulee. Please share! Thanks.

Bonnie Lou

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

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