AVM Survivors Network

Social Media and Social Security


Hey all,

Met with the attorney this morning to start the process of an appeal for the denial of disability benefits through Social Security. A couple of things I wanted to share with…

  • The odds of an appeal getting approved without an attorney are very low.
  • Currently I have two kids in High School - they might both have graduated by the time it gets done. Currently running 12 to 15 months.
  • The attorney said that Social Security is looking at FAcebook and all Social Media very closely looking for a reason to deny claims. “You have back pain? Oh but look, here’s a picture of you white water rafting. What’s up with that? DENIED”

She said that I should shut down my Amazon store and I should deactivate my FAcebook account so they can’t use anything on there to cause problems. Withdrawal shakes and tremors from withdrawing from FB are already happening…

That raises two questions - how secure is this site? If someone wanted to jump on here to find out what someone is talking about, how hard would it be?

Dick - I believe it was you and I that talked about changing my user name because I had my full name on it. I think we should talk because now would be a good time to do that.




Hey Tom,
Having been burnt before by people doing a simple name search and pulling up all sorts of personal details, I now NEVER use my name online. You may not actually put details online yourself but I’ve done a self search and found detail from 40+yrs ago when I was at primary school, scary stuff. The Australian govt have instigated a new medical file system online where everybody gets an online file, unless they opt out. I’ve opted out. You just have to look at what has occurred with Ancestory.com and their DNA tests. Police can now gain access to this DNA profile. Lets for argument sake say your cousin, 3 times removed has taken this DNA test and it shows your family has a rogue cancer gene. Next month you try to obtain a life insurance policy and the insurer has access to this data base and you get rejected because your cousin’s test shows this rogue gene. Some people may think this is a bit of paranoia, but it’s happening already.
And as for ‘Farcebook’, I simply don’t. They are known for selling people’s personal details to outside companies. My details belong to me, not them.
There are only 3 people (I know of anyway) who know both my online entity and my identity. I keep them very separate. I have been badly burnt (legally) with people lining details up previously. Never again. A simple pseudonym works well imo.

Merl from the Moderator Support Team


No way it’s paranoia. It’s bad enough when it’s the “STATE”, add in corporate actors and it’s getting worse than serfdom.


Tom you should change your user name here. I’ve often thought of mentioning it to you before. I agree with Merl and I, in fact, have a “real” name and a secret “online” name. I don’t use any social media or voice activated apps either.

You can’t be too careful.



Deleted that message because I thought it was a private one just to the powers that be…


Hey Tom,
OK, so here’s how you can go about changing your name.
On the top right is your avatar, your picture. If you click on this a drop down menu appears. At the top of the menu there’s your name and 3 symbols. ‘Bookmarks’, ‘Messages’ and ‘Preferences’. Click on preferences.
This will bring up a summary of your account. In bold there is a heading Username and just below that is the username with an image of a pen. Click on the pen. A new window will appear with change username. Put your new name in there and click the blue ‘change’ button at the bottom and it’s done.
Something else I’ve noticed is that there are no details on your ‘Dashboard’. As an established member you’ve already been approved, but I often ask new members to complete those details as it can help other members to know what your condition actually is and what treatments you have tried. This can be helpful both for mods and other members. Just a suggestion.

Merl from the Moderator Support Team



I followed your instructions to a T and everything worked - except there isn’t a “modification pencil” beside user name. There is with e-mail and a few others but not that one?



No problem Tom, it may just be that having Mod privileges gives me those options, my bad. I should be able to alter it for you if you’d like. Just let me know if that’s what you’d like to occur and the final choice of name.
EDIT: Just read your message to Seenie, so I’ve changed it for you to ‘TJ127’
Hopefully it worked



It did! Thanks!



Tom, if you have any special friends in the community, you may want to send them a private message so that they don’t wonder who this TJ127 is! :thinking:



It’s funny that you mentioned a rafting, when I was a teenager I went on a Brain injury camp, we went Rafting, Rock Climbing, Ab sailing, you name it, although I wasn’t very good at any of it, as I can’t use my left side,
I wish you good luck with everything and hope it doesn’t take as long as you’ve been advised



Thank you. Apparently rafting under those type of circumstances are okay, general rafting is not. Who’d have thunk it…

So far, every single thing, every report, every test, every doctors appoint has come back either “stable” or “we don’t know” or “it’s not getting better.” Our expectations are pretty low at this point.

Know what I mean?


  • but you can call me TJ
  • just don’t call me late for supper.


Hey TJ,
I know exactly what you mean, they didn’t know what was wrong with me at first, I was just a 5 year old who had a massive stroke, back then (1989) that was unheard of, finally the right doctor saw my scans a large AVM intwined with all my main arteries so definitely inoperable.

And now I’ve had severe eye pain since the beginning of July and no one knows whats causing it, or what to do it’s like I’m stuck it a rut, no pain medication work

Unfortunately I have to tell you get used to not having answers and then finding from the most bizarre places
My vertigo I had a really bad episode in Hawaii, I had never had it previously, I was already under a Neurologist there, so I went to his hospital, but I left the next day without any answers 10 years later another bad episode the paramedic that picked me up said sounds like vertigo but go get tested