SS Disability Review!!

[Judy W]

Hi, I haven't posted here for awhile but do come in and read your posts and information. This will be my third time for a review to continue my disability since 1990. They do it about every three years. I get so worried everytime it comes around. Before, I just filled out the papers and signed release forms for them to obtain my records from various drs and hospitals. I am wondering if I should obtain a letter from my two drs I mainly see now to help in my review. Do you think this would help or should I continue to do as I have. The only thing that has changed in the past three years is that I have a pain specialist that agrees to give me pain meds so I do not have to go to the ER like I use to for pain shots(which my family dr refuses to do so even if the oral meds do not help in a flare). I am worried they will view this change as one for the better and that I can work now. I still have pain and still have to go to bed with it sometimes for days even with the pain medication I am on now. It sounds like I am so lazy! I hate it! I just can't go back to trying to get through part of a day at work in pain and then going home to bed until the next day! Those days were horrible and even now if I walk or stand or sit for very long I am in a flare! I don't think I could do a very good job and take the pain medication I take now either. I am sorry this turned into a vent but I am so stressed over this and get this way every time. The first time they gave me disability (before I was diagnosed) was for depression and I am not sure what they based it on for the second review.
How do you approach the dr with this type of request without sounding so lazy?
Thanks for any info.

[justdeb1]

Judy,

wow..you're the first person I've found thats been up for review! I'm up for it in Dec of this year and am scared to death! I was diagnosed in 97 and fought for 18 months to get SSD, finally in 98 (november) the judge awarded me and my payments started in 99. I just dont know what to expect on this review thing. I am like you, I cannot walk/sit/stand for any great length of time (max about 30 minutes without being bent over in pain) and I take all my pain meds as well. My prognosis isnt that great, and hasnt been since I was diagnosed 4 years ago. My bladder capacity is about 250cc, under hydro they can only get it to about 500cc and it keeps shrinking back down. I've done all the instills and all the meds known for IC...none have worked. They do the hydros just to buy me some time so they dont have to take my bladder, but the hydros dont help for pain at all. I'm currently on MSCONTIN for pain,and it JUST takes the edge off, barely. I've got a great uro who I love dearly and who is learning and has learned with me as his patient about IC because as of Feb of this year, I was his only patient. My last hydro (in Feb 01) he just told me he diagnosed another woman with IC, his 2nd patient ever, but she doesnt have it as bad as I do, but he's learning from me on how to treat her. All I know is I have to get every single piece of paper for SS for my review, every ER visit, every Dr. visit, no matter what dr. (I have alot of different syndromes now, as I'm sure you do as related to IC) so I have alot of different Drs. It's going to cost me about 200.00 to get all my records for my review. I know in my heart my uro will sign off on my paperwork for SS, but I'm still scared as hell. I'm only 31 and to be out on disability since I was 27 is pretty bad. SS doesnt look too kindly on that I think (being that young) i.e., "lazy" comes to mind. But WE know different. Its not easy being home 24 7 and bound to bed days at a time. I dont know what a "flare" is because I have constant pain every single day, and have for the past 4 years. I consider a "flare" for me..worse than I feel on any given day. Today is my 4th or 5th day out of bed after being IN bed for days because of the pain, so these past 4 days have been "good" days for me, in what I consider "good" days. Ya know?

I would just get all your medical docs again and tell your doc you're up for review again. As far as the pain clinic goes, I've been there, and am going to a new dr./pain clinic in 10 days...I dont know how SS looks at that, but they must look at it from our perspective. If we werent hurting so damn bad...why would we even bother to seek a pain clinic right? I wish you all the luck in the world. Please let me know how the review process goes (in the past) because as I said earlier..I'm scared to death! We lost everything when I got sick because I couldnt work (house, belongings..everything) and now that we have "somewhat" of a normal life *we rent now because we cant afford to buy yet*..I'm afraid they're not going to approve me and we'll lose it all again.

my email address is [email protected]

hugs
deb

[Judy W]

Hi Deb,
I know what you mean by having pain all the time. What I call my "flares" are when I can't get out of bed because of the pain and can barely urinate either.
Whenever I applied to ss disability and for the reviews I just filled out the papers they sent me with the drs names and addresses along with releases for them to obtain my records from each dr and hospital. I have never asked a dr to write a letter for me but since reading some of the posts that have done this ,I was wondering if I should do this also. But I am afraid and do not know how to approach the dr with this. I am afraid that since I have pain meds now that they will think I can work but I still have pain and with the work that I did I can't take pain meds too. If I made any mistakes it would be blamed on my pain meds I am sure. It worries me that I won't be accepted and I can't work! It scares me too!

[Amanda]

If you has an attorney when you applied, I woulld call him/her and ask for their opinion. If not, I would tend to say if you did not have any trouble in the past, I would continue doing what you did.

I am in no way an attorney--- this is just advise as a friend.

Amanda
([email protected])

[JaneP]

Hi Judy,
I was approved for SS disability in January of this year, and used an attorney with my case. On my award letter, SS said that improvement was possible and I would be reviewed about every three years. The attorney told me that the reviews are much easier, because the burden is on SS to prove that you have improved. He said that as long as you have not improved and there is documentation in your medical records that says you have not improved, they can't stop your benefits. He told me to keep seeing my doctors regularly and continue to make sure they document my symptoms and problems. So, as long as you have been seeing your doctors, you shouldn't have any problems keeping your benefits. Take care and good luck to you.

[Tx-Brenda]

I guess I am one of the lucky ones. The SSID office said I would be reviewed every 7 years. I orginally had a lawyer and he said when that time came, just to notify him and he would take care of it. I "Thank God" for these things. Good Luck, Tx-Brenda

[Teri]

Pain medication should have NOTHING to do with your review. Because of the side effects such a drozziness and lightheadness etc...I do remember that question being asked with my first application.
teri

[blueangel]

being reviewed also for the first time

Hi everyone,
I am in the process of being reviewd for the first time and I am so scared.
I am 35 and have been approved since 95. I was wondering also do I just answer their questions and attach a letter from my urologist and a list of every thing thing that has been done since 2005. this is crazy. I am actually sending myself into a flare by paniking. I did not realize that you could sign off for the doctors office to realease the records. But then again the office is such a mess I am afraid they may not send the correct records.
So nervous and just wondering if anyone had advice.
thank you for listening.
Tara

[ads]

I would get my own records and send them myself if you are worried about the doctors doing it. I rarely let docs send my records before I myself see what they say.

ads

Hi everyone,
I am in the process of being reviewd for the first time and I am so scared.
I am 35 and have been approved since 95. I was wondering also do I just answer their questions and attach a letter from my urologist and a list of every thing thing that has been done since 2005. this is crazy. I am actually sending myself into a flare by paniking. I did not realize that you could sign off for the doctors office to realease the records. But then again the office is such a mess I am afraid they may not send the correct records.
So nervous and just wondering if anyone had advice.
thank you for listening.
Tara

[CST]

Hi,
I would think being seen by a pain clinic would be a huge plus factor on your side during a review. Like someone else said, if your pain is so bad that you are in need of a pain clinic -that's bad. Not even everyone with IC goes to a pain clinic (although most of us should I think), but the fact that you do means you are hurting. Even if they are giving you something, that doesn't mean it solves your pain problems. If anything, it means you're probably on meds that make you woozy, unable to perform your job, etc. The reviews are generally not that bad, unless someone has dropped out of medical care and hasn't generated any medical records or been seen by anyone. (and hey, some of us give up and do drop out out of sheer frustration sometimes, so that also doesn't prove you are better). The main thing is to be your own advocate, keep track of records, make sure you know what doctors are saying in their records, and you'll be okay. Don't worry so much that you put yourself into a panic and a bad flare...

[Judith56]

I have been reviewed twice. The first time I had letters written from my doctors which was a big help. Most recently I just had to fill out the paperwork myself and was approved again. I do work part time, because what I get in payments is not enough for us. My advice is to get all the documentation you might need, as this could be the deciding factor for you. I get reviewed about every 7 years, though the first review was after 3 years.

[bk2schultzie]

Social Security Disability Review

I found a yahoo group that is very informative regarding the social security disability review process and all questions regarding s.s. disability...do yourself a favor and check it out....I too got the first dreaded review in the mail a few weeks ago...This site helped answer many questions for me....good luck.....the yahoo group site is - Disinissues....