SSA Changing Rules

[Pickles]

TO ALL,

I just went into SSA site. They are going to revise the medical criteria for Evaluating Immune System Disorder. You can put your two cents worth in about it. They won't exactly say what they are changing but you never know whether it will be better or worse. If you would like, please go to the following website, you can read what others wrote and then go to the e-mail address and write your comments. I wrote a whole page but I'm sure they won't put that on the web site. Mine is not posted yet, I just did it. The comment period is open from May 9th to July 8th, 2003.


Evaluating Immune System (http://policy.ssa.gov/erm/rules.nsf)

That doesn't look right, but that's the only way this would let me do it. The web site address ends with nsf.

The e-mail address you can e-mail your comment is regulations@ssa.gov

I hope this works for you and we can tell Soc Sec how very important it is to keep this as a listing.
I went into preview post and it only shows Evaluating Immune System. The web site is http://policy.ssa.gov/erm/rules.nsf

Let me know if it doesn't work for you.

Thank you and God Bless you,
:love: :flowers:

[Pickles]

:lol: :D :)
It's me again,

I tested it out, it worked when you just click on Evaluating Immune System.

Thanks, I hope this doesn't go against any of the rules on here. We need to tell them that this disease is serious and needs more respect from the doctors and Social Security.

Thank you all,

[Pickles]

It's me again replying to my own post.

If you want to go to http:// www.ssa.gov
you can read all about it.

then click on more disability information
then on the next page click on Plans to update and
revise our rules for Evaluating Immune System
Disorders

Sorry, I can't seem to remember all of this at once and i have to keep going back and seeing if I can give you more info

Hopefully, this is right now.
:wacko: :blink: ;)

[gladm]

Pickles.
I hope these new rules do you some good in getting your social security. :love: :love: love gladm.

[Pickles]

HI Gladm,

Thanks for the reply, I appreciate you taking the time to post. I guess this is not a popular post. I hope they do change the rules for the better and more people can get approved and not have to go what I've been through.

Take Care, :love: :love: :wave:

Have a Great Weekend!!!!!!!!!!!

[Wendy337]

Hi Pickles, :wave: :wave: :wave:

Thanks you for posting this!!!! I think I'll try to do some checking to see if they're planning a general update or if they have some specific revisions in mind.

I certainly plan on adding my $.02 worth!! I am still waiting on my determination, but have found the process to be incredibly stressful & difficult for someone who is sick. I also think the criteria need to take into account the day to day variability & unpredictability of these diseases, and the fact that patients can clearly be ill when blood tests come back normal (which means more research is needed, not that the patients are faking it!). :angry: :angry:

Thanks again for this post - maybe the moderators could be persuaded to post it in this forum so more people will see it & comment - there is power in numbers!! :thumbs:

Take care, :love:

[Pickles]

Thanks Wendy,

I went in today to check to see how many people posted in the forum on the ssa site, I think counting me there was 5 or 6. I e-mailed my lawyer and another lawyer who is giving me advice to see if they could e-mail their comments. I asked them if that would help or hurt my case any. Of course, I haven't heard from them yet. I'm trying to get as many people as I can to e-mail them(ssa)to help them realize that this is a very bad illness and they need to know that we may look perfectly healthy but are not. My comments are on there now, also one from a lawyer, one from a lady with fibromyalgia and a couple more. Like I say, they may make it easier to get approved or make it harder. We just need to let them know how devastating this can be living with this. One day you're tired and can't get out of bed, next day you may feel fine then WHAM, you're dizzy, can't move, sore all over, bad headache, fever, can't walk, do anything for a couple of days. You just never know whats going to happen. :( :(

Thanks, I hope we can make them see we need all the help we can get if we can't work anymore, I'm not good with words anymore with the brain fog and everything. Sometimes, I wind up rambling.

Thanks Gladm and Wendy. :love: :love: :wave:

[Doodle]

Hi all
I am new to this site. I read your postings about ssa and sent them my comment
aa well. Thank you for bringing this to my attention. Hopefully they will hear enough
so that things will get lots better :flowers:
I have been newly diagnosed with sle and things have really been tough. I have come to find out that most
of the problems I have had over the last 10 years have been caused by sle.
The doc that I was seeing treated the symtoms but did not try to find the cause.
I do hope this revision of the ssa is for the better.
One thing we can all hope for is that one day in Heaven there will be no more pain! :love:
Thank you
Doodle

[cilli]

I am new to this site. I have Lupus and Fibromyalgia. Thank you so much for the info about the SSA rule changes. I never would have known otherwise. I did send my comments, hopefully not to harshly, but I am very frustrated with them. As the saying goes, "If they could walk a mile in my shoes" they might not be so slow to process us. Considering I can't even walk a mile in my shoes, especially if there is no one to carry me back!

[Clare.T]

Well it's clear that the main aim is to save money and from the rest of the SSA site to get as many people into the workforce as possible so they won't be a " burden on the community."
I agree about the problem of the unpredictability of lupus how you can feel OK ish one day and like death warmed up the next.

Of course this is all highly political at all levels. I was surpised to see that the LFA doesn't appear to be doing much in this respect although maybe there's off the scene lobbying going on

I do think it's very important that doctors and other specialists write into them. Contacting your local representatives would be excellent too.

I am sorry you feel you haven't had much response I would gladly have done something if I were American

I have some addresses here - sorry of they have already been given. The current definitions make " interesting" reading.

http://a257.g.akamaitech.net/7/257/2422/14...03/03-11491.htm (http://a257.g.akamaitech.net/7/257/2422/14mar20010800/edocket.access.gpo.gov/2003/03-11491.htm)

http://www.ssa.gov/OP_Home/cfr20/404/404-ap09.htm

I hope your efforts will be rewarded.

Clare :luck: :luck: :luck:

[Pickles]

HI Clare, Cilli and Doodle,

Thanks so much, I also sent the LFA a letter and they replied that they and their lawyer were writing some comments to SSA but I don't see it on the web site. I also contacted Scleroderma foundation and Raynauds foundation. Raynauds foundation wrote me back and said they were interested in it but "Raynauds by itself does not qualify patients for disability" She didn't want to "give the people the wrong impression if they read the ruling. She said the large majority of Raynauds sufferers are Primary, not Secondary to another connective tissue disease."

Thanks for the addresses, I will look into those. I appreciate you saying you would have written if you were American. I know lots of people here are from other countries; to the ones who are from USA, I was just wanting to make sure everyone knew about it and would write and give their comments so SSA would not take it out alltogether. We who cannot work because of these illnesses need help, we paid into the system and its their time to help us.

We have till July 8, 2003 to make our comment. The Sjogrens foundation has sent lots of people to comment on them. I can't remember if I wrote them or not. I've e-mailed lots of people, doctors, lawyers, friends.

Thanks again, Anything I can help you with. Let me know.

:love: :love: :wave: :wave: :) :)

[Sannie]

Hi there

While I am very sympathetic to all this, please remember we are all in different countries - and many of us are fighting to raise awareness about lupus etc in much the same way as you are.

Love
Sannie