View Full Version : need help fast...!!
08-17-2004, 04:26 AM
One time i saw somewhere on ic network about ordering a package that would help you when you applied for SSA and now i cannot find that. I should have ordered that package anyway.
I finally got my letter and they denied my disability saying they realized i had a problem and was unable to do any type of work i did in the past but they say i can find less demanding work......
this has been the most frustrating and upsetting thing i have ever done. so before i go appeal it and get a lawyer and all that stuff i need to order that package......so if anyone knows where i can find and order that again...please please let me know........asap firstname.lastname@example.org
08-17-2004, 05:38 AM
Hi Kristi...Sorry to hear about SS denial. I just sent you an e-mail. I got mine from:
The package was very good with a personalized letter to submit to SS along with lots of beneficial info on IC.
Hang in there girl. Keep a seat open for me (cuz I know misery loves company!) as I expect to hear on my decision from SS any day now. Don't give up hope or the fight....
08-17-2004, 07:04 AM
i also posted to your other post.
i'm so sorry this happen to you it also happen to me the very same Dear John letter.
personally i don't think they even look over our record they just say no after a peroid of time because once you go back and try again that is when they start getting more records and sending you to there doctors. I told them flat out i didn't want my SSD on my nerves i wanted it on my IC but yet they still sent me to one of there doctor but it was the same doctor my lawyer was sending me too. to.
they tell us NO because they want us to throw up our hands and say forget this we don't have time for this and go back to work and keep working sick because the more we work the less they have to pay us even tho it is money we have helped put in.
only IF they could get some real help there and understand what IC is IC is classafied under cancer if i remember right.
hope all goes well and that package helps you if that link doesnt work you can email jill at email@example.com and she will
08-17-2004, 02:04 PM
Thanks everyone..........for all the information.........i am going to get started right away and see what can be done........this is just so frustrating.........but i do appreciate all your help i dont know what i would do without this website..........
hugs and love to all
08-17-2004, 02:34 PM
That may be a different sourse that can help. Good luck...sorry for the struggle.
08-17-2004, 02:35 PM
My husband has IC and receives SSD benefits. It took us about a year to get approved. I say "us" because I had to do most of the paperwork because it depressed him so much to have to write everything down--his medical history, his work history, his current daily routine, etc.
Like many people, we got the ball rolling by calling the SSA who then sent a large packet of papers that had to be filled out "precisely" as requested. And, like many people we didn't seek help from any advisors before we did this. So, although the information we provided was thorough, and although my husband had been officially diagnosed with IC, we were turned down the first time.
The night we got that notice in the mail was horrid. My husband go SO depressed. He had been out of work six month already, so we desperately needed the money. And he didn't think we stood a chance of winning an appeal. But I didn't want to give up.
Long story short, I learn about the Interstitial Cystitis Association website, and went there to learn all I could about obtaining benefits. That's when I discovered that just two weeks prior to our denial the SSA had for the first time created an official Ruling about IC. (I can't remember it's exact number, but if you go to ichelp.org you will be able to locate it.) THe Ruling states that there are different degrees of the disease, and if your condition is debilitating you may fit the profile of a "disabled" person with IC.
We ordered the SSA packet from the website and had his urologist write a letter very similar to the example included in the packet. We also had to fill out more paperwork and made sure to reference that Ruling over and over again. We figured his case may have simply fallen through the cracks since the Ruling was so new.
We never needed a lawyer. We simply made sure to be VERY detailed in our correspondence, and the urologist was kind enough to let us review the letter to make sure it contained everything we felt important to our case. When you have your doctor(s) write a letter for you, it has to be VERY explicit. Our urologist gave my husband's history and all the therapies/treatments he had tried, gave his future prognosis, and MOST IMPORTANTLY, gave a comparison of his symtoms that matched disorders that are already on the SSA's automatic disability approval list. I can't tell you how important it is to compare IC symptoms to the more widely recognized disorders that have already been approved by the SSA.
It took one denial and one year total to get approved, but we did. And it has made all the difference in our ability to make ends meet with me being the only one in my family who can hold down a job. With the back payments we received, we were able to purchase a home for the first time. And just in time, too, because housing prices in our area have skyrocketed in the last year, so we doubt we would ever have been able to own a home if we hadn't purchased when we did.
Another thing I need to emphasize is to be sure and keep checking with the SSA employee handling your case in the local office. We found out towards the end of our process that our case was held up for SIX WEEKS simply because our case worker said she couldn't get ahold of us (even though my husband was home 124/7!). We believe that was untrue because we never got a phone call, nor a letter in the mail. Once we contacted the local office and learned of the problem, we went down and filled out some additional paperwork. Then, within about two weeks we learned that we had been approved because we went to check our bank account balance and found it to be significantly higher than it should have been. THAT was a happy day. It wasn't until a few days AFTER we received the first disbursement that we received the official letter stating that we had FINALLY been approved.
If your condition is so bad that you KNOW you can't work, even though other people try to tell you that you can, then you SHOULD apply for benefits if you qualify. Taking even a little finacial burden off your back can help to ease the symptoms of IC that are manifested by anxiety.
08-18-2004, 08:01 AM
[B] I wish something could be done and soon........i am going to have to move back in with my parents now..........up root my child and our normal routines to fit around theres.......its just a mess. My daughter has four cats and two dogs......my mother said they cannot come.......our smallest dog only weighs about seven or eight pound if that.....hes a tiny chuahuaua ( spell??) hes half regular and half tea cup so hes not as big as a regular one and not as small as the teacup.......but hes six and half years old and never been outside......so not only am i stressed out about not being able to provide for my child but now everything she loves and holds dear will be ripped away as well. They psychiatrist they sent me too , said and i quote i was not able to work due to severe depression and anxiety........but still i was denied........The doctors now think that the interstim is the only thing thats going to help me , but i found out yesterday that since i am on medicaid.....medicaid will not pay for it.......so they are going to have to try the hospital in winston salem.......they have some other kind of program that may help me.....so now i have to wait another month to see if i can get any relief.........
I am miserable.........physically and emotionally and now finacially........it just never seeems to end.........and i have to have a lump in my breast biopsied now too.....
I am drowning and i do not know how to swim..........
i have no clue what else to do.............thanks for all the replies and concerns and information...........
08-23-2004, 11:12 AM
It's awful to hear all of your stroies about being so sick! Right now, I'm about at the end of my rope too. It' excrutiating to sit at work all day long, but I have to. I can't pay my bills if I don't. I'm not married and my 15 year old brother lives with me. I have to pay my car payment and rent, because no one else will if I don't. I'm getting to the point where I can't handle life anymore. It's so hard to be the one that everyone relies on and not have anyone to turn to myself. But I doubt I'd be approved for SSD because I'm still working now. None of the treatments that I've had so far have been effective. I can't just be drugged up all day long and be efficiant at work (although that would be nice). hehe Good luck to all of you!
08-23-2004, 12:29 PM
Gloria, I've been wondering how you were doing and was going to send you a pm to see if you had heard anything yet. Hang in there, girl and know that we are here for you!
08-23-2004, 01:33 PM
donutgirl.......well i am hanging in there......just got my appeal papers...and i am going to have to get a lawyer looks like..........but just in case i enrolled in some medical office administration stuff at school, so that maybe if i never get approved i can at least hopefully do medical transcription at home.......i figure at this point i need a back up plan........sometimes i think its more trouble than its worth but i figure that is what they want.......email me if u want and i will give u more specific details...
long story......i am on medicaid and it won't pay for my interstim but my doctors are working on another plan .....wont know about that until sept 16th......in the meantime i am now taking three ditrapans a day instead of two......15mg each.....i tried detrol la and it made it worse.....must be something that the capsule is made off .....so he said to try the ditrapan and see what happens........i am somewhat afraid of an overdose but he swears it will be safe........hmmmmm but if u wanna talk about that just email me.......firstname.lastname@example.org
melanie.........ah i feel your pain and agony and misery and overwhelming helplessness.
I go thru that many days myself .....with a 16 year old daughter to raise and take care of.......not all the medications will make u unable to work...........ditrapan and urelle or prosed........something like that.......will not do anything to you but dry your mouth out.....which one gets use too rather quickly........what kinds of medicines have you tried??? feel free to email me if u want to .......i would be glad to talk with you at anytime........it helps to rant and rave and discuss with others about this ....especially to one of us that has it and understands what you are going thru...... hang in there........
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