Dialysis and Social Networking

Social Networking

Social Networking

Update 3/30/13:  I bought my third table/pad computer a couple weeks ago.  I will post about  that.  I’ve learned much about the technology since my original posting.

Update 9/18/12: I found this rather funny site illustrating “Social Networking” and figured I should share it with you. 

There’s a problem with blogging about this topic (Dialysis and Social Networking).  If you’re reading this, you probably already have a good, working knowledge of it. The people that aren’t using social networking probably won’t read about it.  But I’ll try to get the ball rolling nonetheless.

At this moment, social networking mostly consists of Facebook, Twitter, and various discussion Forums.  I say, “at this moment” because it’s like the most popular person in high school, it changes.  For example, MySpace used to be THE social networking site until it got taken over by Facebook and Facebook will probably go away someday too.  My experience with the “intertubes” goes all the way back to the early nineties when the internet was in it’s infancy.  I’ve seen so many popular sites come and go, I barely remember them;  GeoCities is a good example. (I had almost forgotten that!) But, I am sure there will always be something similar.

Facebook

For now Facebook is the most popular.  It’s a central location where each person or organization has a webpage that allows them to post messages, photos and links to other sites and facebook accounts that may be of interest to their “friends”.  DPC (Dialysis Patient Citizens has a Facebook page, for example.  The only problem with Facebook is that their security is questionable.  They lost about 25% of their accounts due to allegations of their selling client information like names, address, interests, etc.  However they claim they don’t do that.   But, word to the wise, don’t post what you think shouldn’t be posted and read up on the security settings.  To get started, you open an account by signing up and use the search box to find others.  I found Todd Hazelton’s page from a comment he left on DPC’s page.  If you want to be “friends” with Todd, you can send a request and get connected.  Once accepted, Todd would then show up in your “friends” section of your Facebook page.  From Todds’ page I clicked on Kidney Wishes link and found out about them. A few of these and you keep branching out.  In a while you can have a complex network of “friends”. But beware, it can be addicting and/or become a lot of work.

Twitter

Twitter is like a conversation in a grocery store checkout line.  You make a comment (or a tweet) of not more than 140 characters and it goes out into the Twitter-world for all to see and read.  The social networking side of it is that you can “follow” people and they can follow you.  There is no end to the topics that can come up on Twitter but if you’re interested in a few specific topics, you can place “hash tags” in your tweet so others of a similar interest can find it.  For example,  I can tweet “I just posted in my blog about #dialysis at http://www.devonTexas.wordpress.com” and the tweet will go out looking like this:

Ijust posted in my blog about #dialysis at http://www.devonTexas.wordpress.com

Twitter will embed the website address into the message so that people can click it to access the site and the hashtag (#dialysis) will make it possible to find it in a search for “#dialysis).  You can place several hashtags in a Tweet.

When you see a Tweet, you can reply to that tweet and it will appear as part of a conversation. You can also re-tweet it so it goes out to all your followers or you can identify it as a favorite and save it to a list of your favorite tweets.

When you create a Twitter account, it will have an at-sign in front of it.  For example, mine is @DevonTexas.  That is your Twitter account name and it will link to your profile page. Your profile can contain as much or as little as you want to disclose. (Again, the caution about what you should disclose.)  If you use a common term like @dialysis that is probably already taken so you’ll have to make it unique by adding numbers or other characters.  You figure that out when you create an account.  You can “follow” others on Twitter and build a network like Facebook.

Remember that everything in Twitter is public. If you get into an argument, everyone can read what’s being said. If you encounter someone you don’t wish to head from, you can block them.  But, in general, try to keep things civil and polite… like in a Kroger checkout line.  In the event, you need to, you can delete a tweet, so there is a way to back things out.  Again, just be careful what you tweet.

Forums

There are various dialysis and kidney related discussion forums that are available.  Most prominent is MyDavita which is specific to dialysis and kidney disease.  Davita recently added MyDavita which personalizes the site for members but their forum goes back for several years.  It’s not easy to navigate the discussion area, though.  I mostly stay to the first few forum areas.  It needs some modernizing, for sure.  However, I suspect they’ll get to that eventually. The really nice feature at MyDavita.com is their recipe and menu planning and dietary support.  They have some great ideas for kidney-friendly meals!  They are very proactive in helping us find things we can eat and enjoy.

Another discussion forum is “I Hate Dialysis“,  it’s a bit easier to navigate than Davita’s forum and the content goes back to 2006 to the founder, Epoman, who started it because he got banned by another site for his postings.  Ironically, I don’t post there either for the same reason.  Funny thing was that our disagreements had nothing to do with dialysis or kidney disease but were political and they didn’t want to hear from another point of view.  Like Epoman (who passed away in 2007), I was kicked out for my postings so I hold that up as an honor.  It’s just disappointing that someone would abuse their position as moderator to enforce their political point of view.  In researching for this posting, however, I noticed that the members and moderators I disagreed with are no longer there. I hope they’ve changed their ham-handed ways.

Anyway, IHD has many people who are very willing and qualified to help.  Like any site, you have some who are much less qualified than they think they are but, in general, the replies to comments are pretty helpful.  In my posting about “Dialysis and the Initial Shock” those comments came from my time at IHD.  As you can tell, they were quite helpful.

Strangely, the level of activity at most kidney-related forums is pretty low.  Most only have a few postings in a day. I’m not sure why, it seems there are lots of people active on the internet who are CKD or dialysis patients.  I guess we’re just a quiet group.

Conclusion

So, those are three areas of social networking that are available to us.  Each has it’s strengths and weaknesses.  I find a combination of each is satisfying for me. I post on MyDavita.com, I Tweet on Twitter and I dabble in Facebook.  But much of my time is spent blogging.  In the interest of simplicity and brevity, I barely scratched the surface of this topic.  I encourage you to add your ideas and suggestions in the comments below.

(In a future posting, I will write about “Dialysis and Blogging”.)

© 2012 DevonTexas

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About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I can be hooked up to a machine that will clean my blood as the kidneys should. Three days a week, I go to a center and have too very large needles stuck in my arm to remove and replace my blood as it passes through a process where it's cleaned and the fluid is removed, a process taking a little over four hours each time. I want to advance knowledge about dialysis so that other patients can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them. All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. Enjoy.
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3 Responses to Dialysis and Social Networking

  1. Thank you for mentioning IHateDialysis.com – we have on average 115 new posts per day and 500,000 page views per month. We have a facebook page and also a facebook group. All are welcome: patients, caregivers, family, friends and medical professionals.

  2. My support person has found Facebook to be a very useful connection site,especially a group called Dialysis Discussions Uncensored (I hope I got that right!).There are,she tells me,a lot of dialysis patient and/or caretaker groups on Facebook.

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