Heather,

You may be able to avoid it entirely. I wrote letters to every politician I could think of. My State Representative DID SOMETHING. He wrote a letter to the Judge in my case asking the Judge to "resolve this situation." I was granted SSDI and my hearing was cancelled.

If you do end up going to the hearing, don't worry about your brain fog; that's EXACTLY why you can't work!!! If they find you to be confused, disoriented, then that's just fine. They want to see that you cannot work ANY type of job. Go without make-up for the hearing, don't take your pain meds that day. The idea is for the Judge to SEE HOW SICK YOU ARE. Do not put on a "brave face"; that's not reality for you and it won't get you the disability that you are seeking because you are sick.

Now, if the Judge turns you down, APPEAL. Virtually EVERYONE gets turned down in this process. Those that get granted SS are those people who APPEAL APPEAL APPEAL.

Tracy

Heather,

I agree totally with what Tracy has stated. When I applied for SSD, I too wrote letters to my state representatives, senators and governor, as it turns out I never had to go in front of a judge and I was granted SSD on the first try.

There is a lady named Carolyn Magura who has a chronic illness herself, I believe MS, anyway, she offers free help to those seeking SSD benifits and writes expert witness letters and such. She has a disability package that she has put together and will email you at no charge. You can read her info on the "But You Don't Look Sick" website/forum http://www.butyoudontlooksick.com/boards/viewtopic.php?f=32&t=5536
or you can find her info at http://www.disabilitykey.com
and her direct email is csmagura@yahoo.com

Best of luck to you, don't give up it will all work out!
Hugs,
Melissa

Thanks Mel and Tracy.....
I applied in 2/08, was turned down, had a physical by a dr. they chose in 5/08 and was turned down. I appealed in 6/08.
I called the SSI office a few weeks ago and was told it still takes about 30 months so it could be another year until I hear anything. I wrote a letter to my congressman (Spencer Bachus) but haven't heard anything.
I know the type of lupus (tumid) I have is not nearly as disabling as what you guys have but it did interfere with my career. I was 62 last October and have been drawing my Social Security.
I am going to check out the two website you posted, Mel and see what happens.
On another subject, I agree 100% about being truthful on here and not being on the defensive. That just takes up way too much energy and we all need to reserve what energy we have.
Call it women's intuition, but I have questioned some posts on here myself and wondered about their validity.
I know your answers and suggestions are well thought out and very much on target.
God bless everyone on here and I hope we will all have a great week.
I care about everyone on this site and only wish them the best.
Hope that wasn't too sappy!!! lol lol
Virginia

Thanks so much, Tracy and Melissa. That is a great idea to write letters to all of the politicians. It would be wonderful if I could skip the hearing altogether! I am clueless what to write to the politicians, though. It is so frustrating how bad my brain fog is and how minimal my stress tolerance is. I used to have a very stressful, high level career in finance before I was diagnosed with lupus and now the thought of writing a letter sends me into a panic!

Can you give me some advice on what to include? I am thinking details on all of my diagnoses and how they impact me, the medicine I am on and side effects, and then I draw a blank! I will also email that woman you recommended, Melissa, but when I looked at her website, she is charging for things now. But maybe if I email her directly since I am pretty far in the process, she will help me.

Thanks again!

Heather

I searched the internet for sample letters or suggestions for content but found nothing. I emailed Carolyn so hopefully she will get back to me.

Any suggestions in the mean time? Long or short, how much detail? I am thinking list all of my diagnoses and how they impact me, the medicine I am on and side effects, and then I draw a blank. Should I say I am afraid of the hearing due to my brain fog?

I am stressing out about this so much which is why i am still up at 1 am! Any suggestions would be greatly appreciated.
Thanks!

Heather

Hi, Shadeseeker! I know what u are goin thru. My hearing was the first wek in May 09, 2 weeks later I got my approval letter. I wasn't very nervous like everyone thought I should be-I was just so relieved that it was time to see Judge. There were only 5 of us in courtroom-me, attny, judge,etc. Anyway, I knew I had detailed, complete medical records & also letter from state rep. (I called & spoke with him & he sent letter). I dressed decently, but no makeup. (I dont wear it anyway cause my face is so sensitive). I didn't do much to my hair, nothing to nails. I dressed comfortable. Just be honest and don't act/look like you feel better than you do. Good Luck-you deserve to get it. It is a long process-just keep fighting for it. Even if you lose everything like I did. Renee

The letter I sent was truthful detailing my illness and I also attached a letter from MY RHEUMY supporting my statement. Be sure to say you're a constituent and VOTE. They want to keep voters happy.

And don't just write to your Senator or Congressman, write to your STATE officials, governors, mayors, etc. I work 15 letters; i got one response, but that one response was all it took.

Hope this helps.

Tracy

Hi, i live in England, and we have a different system. I remember how nervous i was at the appeal. I lost my first hearing because doctors still didnt have a diagnosis, so it was just "symtoms".
Here we can have someone talk on our behalf. It could be family friend advocat or health worker.
i remember going with a positive mind though, thinking i was doing it on behalf of all the people who were sick with this illness and needed to be heard. i actually got an apology from them for not believing me the first time round.
Write down things you need to remember.....all the symptoms that impact your life. Including the depression etc.
I hope you dont have to go, but if you do just be yourself and fight for your right.
I wish you all the best in this.
Love and hugs x

Shadeseeker, i can understand you getting scared, its normal its the unknown that scares us the most, but hang in there you can do it! And like Tracy said write letters it does help, see the ss office expects people to give up cause its a hassle to go threw all the hoops they put you threw,BUT!!! anything worth having is worth waiting for right? You will get it done and then it will be behind you and you will say wow why was i so scared? Best of luck to you! Take care XX Cindi

Thanks so much for all your replies & encouragement. I was so surprised at how difficult this process is for people that are disabled. I have felt many times that I could not handle the stress of it. And now I heard that the online system has time limits for you to answer the questions. That is so ridiculous! I have such a hard time typing because my hands cramp up & I make typos. I can't imagine how difficult that is for people who have worse hand or cognitive issues than I have. Thanks for the info. on the letters, Tracy. I am going to type & mail them this week. Can't hurt & I would be thrilled to skip the hearing altogether! It can't come soon enougth for me to finally get a good night sleep :)