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Old 02-25-2010, 05:27 PM #1
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Default PNer introduces herself

Hello everyone !

I’m a new member here. I have had Small Fiber Neuropathy since 2004, and in 2008 was also diagnosed with Autonomic Neuropathy. It was the onset of the Autonomic Neuropathy that finally made it impossible to continue working. So, in January 2009 I filed for SSDI. I went through nine frustrating months, with my case being assigned to the DQB, but was finally approved at the Initial Decision level.

I have to admit I’m a reluctant joiner. I do much better as a lurker, and I have been lurking around this forum for a couple of years. In fact, when I was first diagnosed with SFN, I found a great spreadsheet at Liza Jane’s website for tracking my lab tests.

At the encouragement of friends and family, who knew I needed some way to fill my time, I started a blog about my experience with Social Security. In that blog, I devoted a page to the Social Security forms with fillable form fields. It was so frustrating for me to find that in this day and age a government agency would publish pdf forms, but not include fillable fields. But then, I have decided that SSA makes application as difficult as possible for a reason. I did several internet searches and couldn’t find anyplace that had forms with the fillable fields.

Since computers are my thing and I have difficulty with my hands cramping when trying to fill out page upon page of forms, I created the fillable form fields for all of the SSDI application forms. It worked great because if I wanted to change something, it didn’t mean starting the entire page over again.

I would like to share them with as many people as possible, and would even take suggestions for expanding the selection of forms to any forms (not just SSA), that others would find useful.

Like I said, I’m a terrible joiner, but decided this might be the way to let others know I have what they might need. **

I will look forward to being an occasional contributor to the Peripheral Neuropathy forum, but even this post has left me feeling like I’m standing naked before a crowd.
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Old 02-26-2010, 08:13 AM #2
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Default Welcome to Neurotalk--

--and no need to feel as if you're "standing naked before a crowd"--after all, nobody here would know if you were. (In keeping with the famous New Yorker cartoon, on the Internet, nobody even knows what species anyone is, although I highly suspect myself of being canine in some aspects.)

We're glad you're here, and I think that what you've done is very useful and you should be well proud of your effort.

We also have a Social Security Disability forum you might want to share this with:

http://neurotalk.psychcentral.com/forum28.html

Feel free to post, or not post, anywhere you want.
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Old 02-26-2010, 10:50 AM #3
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Welcome to NT


It's a great place to give and receive so others can have information and support.

See you around.
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Old 02-26-2010, 12:21 PM #4
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Default Thanks

Thank you for the welcome. I'll post the link to my forms site once I have accumulated enough posts. And, I'll see what advice I can offer in the Social Security forums.
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Old 02-26-2010, 12:29 PM #5
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Hello, and welcome to NT! This is such a great place with so many friendly and helpful people.

We're glad you found us!
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Old 02-26-2010, 07:18 PM #6
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Hi and welcome to Neuro Talk,

wow what a great thing to share, filling out forms on a computer. I often have trouble writing, and usually get someone else to fill out forms or take them home, I'm sure people will find it a great help.
take care
Kate
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Old 02-28-2010, 11:45 AM #7
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Hi!

I'm brand-new here, too so you're not alone.

I only just got diagnosed with PN and am scared to death. I don't have my test results back so I'm in limbo at the moment.

I'll probably see you around here so I wanted to say hi.
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Old 02-28-2010, 12:55 PM #8
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Default One day at a time

Hi Onna:

I remember how frightening everything was at first. When I look back now, I realize that most of the fear came from feeling absolutely overwhelmed.

I'm guessing that is where you are right now. It will get better. Just give yourself permission to "do it, learn it, accept it - tomorrow". You already know you can only do so much physically in a given day. So, give yourself permission to only deal with so much emotionally in a day.

It won't be long before you look back and realize just how much you really have accomplished.
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Old 02-28-2010, 01:29 PM #9
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Quote:
Originally Posted by plgerrard View Post
Hi Onna:

I remember how frightening everything was at first. When I look back now, I realize that most of the fear came from feeling absolutely overwhelmed.

I'm guessing that is where you are right now. It will get better. Just give yourself permission to "do it, learn it, accept it - tomorrow". You already know you can only do so much physically in a given day. So, give yourself permission to only deal with so much emotionally in a day.

It won't be long before you look back and realize just how much you really have accomplished.
Thanks for the support, plgerrard.

I'm already living with only so many physical 'spoon' limitations (google spoon theory) everyday so time management is already ingrained. It's just so frustrating that now I have to worry about yet ANOTHER permanent health issue and this one is more insidious than the arthritis-related ones.

*hugs*
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Old 03-03-2010, 02:40 AM #10
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Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around.

Darlene
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