Need help with requirements to apply for SS benefits

[Melanie S]

Okay, sorry for the novel, but just to give some background....

I was diagnosed w/ IC in May of 2002, after 2 months of severe symptoms. I don't think I would have been diagnosed that soon (I went through the dr. who told me I had trigonitis and to deal with it, the 2 who had no clue, and one who diagnosed it, but refused to treat pain, before getting on the right track). Leading up to that, from the time I was 6, I had early symptoms (and perhaps warning signs of things to come)...I am 31, and don't ever remember being able to go longer than 1/2 hr. or so w/o peeing w/o being in awful pain. We were told my bladder shrunk due to constant UTI's I had as a kid (hospitalized several times per year). Now we know the truth...it's a little hard, scarred, bleeding mess. Terrific.

Anyway...I have worked most of my life, and full-time w/ benefits taken out for at least 13 years. When I was diagnosed, I had management desk job w/ lots of paperwork and mental stress, not much physicality to it. My employer has been great, and hung in there w/ my absences and surgeries through March of this year, when I just couldn't do it anymore. I was getting up at 3 or 4 a.m. to take pain meds, soak, and use the heating pad so that I could be at work at 7:30. I couldn' concentrate or stay awake when I was huddled at my desk w/ the heating pad. No way. I missed an unbelievable amount of work, and they didn't dock me for a day, thank God. We have been blessed with that. Anyway, they agreed to splitting my old job into 2 positions...one FT, one PT...so, I am doing the PT one now, mainly from home. The thought was that going PT would help alleviate stress, which is a big trigger for me.

It has been 2 months of the PT now, and I'll be honest...I don't know how long I can keep this up (it is wearing me out...it sounds pathetic, but it is true), but we need the money...I don't want us to lose more to this illness. I didn't realize how stressed I was before, and it is a relief to be able to rest more, but it also shows me that I need even less stress than this. My family has come to the rescue BIG TIME and gave us a huge gift to pay off a few of our larger bills, but there are still things there (and no, we don't live extravagently...we have a little old house that is 70 years old, 2 bedrooms, comfy and neat, but not great...it is so small that I actually work in our bedroom, not a great situation).

With all of that said...how do you manage to qualify to apply, without going bankrupt in the interim? I am making (net) about $900/mo part-time, which is above the level I saw on the SSA site.

I don't want to quit my job on the hope that SSA will come through, but I have no quality of life. I get up, work a little, rest, work a little, etc. I am now keeping our kiddo at home to save $ on daycare, but I can barely even get up to make her breakfast. The only thing that keeps me going is knowing that we need the $ or there won't be much of any breakfast. How do you ever get approved, though? I have heard that if you can possibly do any job (maybe some unknown computer job from home, who knows what they think) for any length of time, you are up the creek...doesn't matter if you are half killing yourself to try to do it, and do it well. How true is this?

Also, there is the matter of insurance...I am on my work insurance, and don't even know if my DH's would accept me w/ all of this (although I think there may be some open enrollment when they have to, but I am fuzzy on why I think that). I have to be on insurance...the co-pays on my meds and docs are enough for us to handle, we couldn't handle full cost. Any suggestions?

In some of the posts, I saw mention of people being denied b/c their cars were too expensive or their DH's made too much money....what is the deal with all of that? I didn't even come across that in the SSA site, so that is another entire nightmare to contemplate. My DH works shift work, and works other jobs most of his days off...so, what I am hearing is that our dear government will actually penalize us for being responsible. Is it truly true? What the heck is the deal with this?

I apologize for the long post...I am just really tired, and really desperate, and have tons of questions. I feel so awful for what everyone here is going through...it is bad enough to be trapped in your home in a body that constantly hurts, much less be analyzed by people who are well and whole, so you can receive (or be denied) a fraction of what you have paid into "the system."

Thanks for any advice you can offer re: applying. I just don't want to jump in, and be up the creek before I even get going. Best wishes, hugs, and prayers to all grouphug

~ Melanie S ~

[Teri]

The easiest place to start is by calling your local SS office. The can answer your questions quicker and faster than we can, plus here you get opinions or experiences. Calling them, you get the proper guidlines. If you apply them alot of us can help.

I see you are New Welcome to the ICN, your next best family (your first best alot of times) hi

[Melanie S]

Thanks for the advice. I guess I have just gotten overwhelmed, reading about other's experiences w/ SSA. It sounds scary to call, like they are judging you from the very beginning, and I don't want to get off on the wrong foot if I take that step. eek

TY for the welcome and encouragement! I signed up and have used the site for some time (I think this is the best resource...without it, I don't think I would have had the info to push to find a doc to get diagnosed), but until I went to my new PT status, I didn't really have time to post. Well, at least I have that now, LOL lmao

Take care, and all the best to you;o) ~Melanie S ~

[naturetree]

I am in a similar situation to you. I've known since January that I needed to apply for disability, but it took me about 5 months to start it because I didn't know what to do. And, like you, I also was afraid of making a "mistake." I finally just called SS on their 800 number and started the darn thing.

It's too bad you couldn't work fewer hours. I think that less than $800 per month requirement that SS has refers to gross income. I was offered a PT work situation right after I decided to apply for disability and it was a difficult decision to accept it--I also feel I may have "ruined" my chances because I can do some work at home. But at least I am making less than $800. I'm not even sure how that works if you are making more--if you can start the claim anyway.

I think you should just call SS and ask them--I know I was afraid to say the wrong thing, too. I've realized there must have been plenty of others with confusing work situations.

Some of the people who've answered my calls at the 800 SS# have been very nice and informative--coincidentally they were women. There was one person, who both times was kind of abrupt and seemed like he would sabatoge me--coincidentally it was a man. So, just call up anonymously at first, if you feel better that way, and ask some questions.

I definitely think you should see what the rules are for getting on your husband's health insurance as soon as possible. If you get on his insurance, half of your problem will be solved. Although you may feel awkward asking questions--believe me I've been afraid of making so many calls in my life--many people ask these questions. Just say, what are the rules if a spouse signs up with her husband's insurance concerning pre-existing conditions?, etc. You don't need to mention your situation specifically. And get the exact date when they have open enrollment, etc., then get on his insurance!

I've ordered a few books--Nolo's Guide to SS Disability and the Disability Workbook. You can get them from this site or call your local Barnes and Noble bookstore to order them within a few days. Also the IC Association has a 14-page booklet Disability Evaluation in a Nutshell, which shows your doctor how to write a report.

I am only slightly less confused than you are, and I have a lot of questions, too. I think you have a good case, and maybe should get started. When you first start the claim over the phone, they ask for minimal information. You'll have time then to start getting your records. So, the biggest uncertainty with you, is one I don't know the answer to--can you start applying while you are making more than their $800 maximum?.

Hey, I just had a great idea. If your employer is so amazingly supportive, why not ask to have your hourly rate or salary REDUCED so that you are grossing less than $800 a month????? Just a thought.

Good luck.

[nipper]

For all of you interested in Social Security and /or Supplemental Security Income disability benefits you may find the official SSA evaluation rules for IC by:

1. go to ssa.gov
2. under the Resources column click on Program Operations Manual System
3. click on Table of Contents
4. click on Search
5. type in "DI 24555.001" and enter
6. click on DI 24455.001 - Evaluation of IC and find out everything you need to know
Note: Title II is Social Security Benefits and Title XVI is Supplemental Security Income Benefits. Title II is based on your work and quarters of coverage under SS and Title XVI is a program based on your financial need-both programs administered by SSA. Good Luck!

[Melanie S]

Thanks to you both for your help!! I feel a little bit better about it all now. It is nutso...there is so much information on that SSA site, and I don't have a problem with that, but I am surprised that they don't address some of the questions we raised. These must come up rather often! It is crazy...we are already sick and have had to give up so much, and now have to dread asking for more help, b/c the process is so potentially stressful.

My brother had a good point...they make us more sick (i.e. more of a strain on the economy, to think of it from the government perspective) with the stress and length of the process. I understand having to weed out the undeserving, but don't understand how that happens when I often hear people talking about their disabilty payments, and using them to do extra things other than day-to-day living.

I had thought about the money thing...seeing if I could get by with less...but there is just no way to reasonably make it happen. I am too scared to count on getting approved, and our back-up $ resources have dwindled, b/c of my medical problems. I was diagnosed w/ high BP, depression, IBS, and secondary infertility (in addition to some other "girl problems" that go along with that)...so, I have medication and appointments for all of that. Then there are the IC visits and meds, and treatments for side effects from those....you all know what I mean...it is an endless money flow out for stuff you hate to spend money on.

My family has helped tremendously, and we have cut back a lot, but now we are to the point where I would have to sell my engagement ring, or try to get by w/ one car, or something that either wouldn't work or that I just can't bring myself to do. That's extreme, but realistic for where we are at if I requested a pay decrease and / or quit my job, and then either didn't get approved, or got a tiny sum of SS money to help.

And, I bet some of you may be like me...I hate to even apply for help. I have been pretty self-sufficient since I was about 13 - 14, always working and saving and paying for my own stuff. I love being a mom and my family life, and want more time to enjoy that, but I really loved my job and was exceptional at it. It was so depressing to admit that I couldn't keep up w/ it anymore, and now to cut back to part-time and only doing a part of the former job, and still having difficulty...I know it is not my fault, but I just hate it. We all want our lives back, I am sure. Then, to feel dread over trying to jump through hoops to possibly get SS help...not a great feeling.

Oh, well. Thanks to all for listening, and all the helpful advice. Best of luck to anyone who is applying...please keep us posted on how your application goes, and I will do the same. We have to stick together to find all of the ins and outs of this deal grouphug

[SusanC]

Hi! I've been on ssdisability insurance since July 2002. According to the rules, you may make up to $780, I believe, before they consider you substantially employed. And, any and all $$$'s you spend to allow yourself to work...meds, doc visits, etc. is deducted from the amount you make.

Sounds like those deductions would help you. Now, this may be bad news. You may have to be out of work for a period of time before they will consider your application. Mine went through quickly...Feb. applied, May, I was approved, July, got first check. But, I had been out of work completely for over a year.

I would call anonymously at first to ask your questions. Do you have to be completely out of work or is being bumped to part-time OK? Actually, the fact that you left Full-time to try part time and that's killing you should give you and SS a message.

It will take time, but the paperwork is worth it. I agree with the others suggestions about getting the book, etc. It has sample doctor letters to submit to your docs when you ask for their letter for SS. You might want to try:

1..writing a letter to your doctors telling how this IC and the pain, meds affect your life
..tell it just how you told us...just the facts, though...how long you can work, sit, stand...what you do for pain...how you do/do not go out, have sex, etc., how you tried to continue working and how IC changed you from an effective full time person to a barely there with a heating pad between your legs part timer who had trouble thinking straight....you get the idea, right. Just explain how it was and is for YOU!

sometimes putting a personal face on IC does wonders for your docs and SS

2...send a copy of this letter to all of your docs asking for his/their support as you apply for SS disability. Also send a copy of the sample SS doctor's letter required (from the book...there is one based on IC...they will, of course write their own based on YOUR IC, but it helps.) YOUR personal letter will help the doc to write his information in the form that SS requires.

3...start keeping a pain and frequency log ASAP. you need to document how you feel and how often you.....you know This will help your case also, with your doc and with SS. Use this to keep track of the meds you take and other pain management strategies..including the heating pad

4...consider submitting the letter in (1) to SS along with your paperwork to highlight your case

5....get as much info as you can from here and the ICA website about IC. Pick the best 3 or so to submit with your claim to SS

6...keep copies of EVERYTHING you do and/or send to SS

You CAN do this. Just take little bites out of the paperwork each day. Soon it will be done. We will help you with any support we can on this site.

Whew!! Now, I'm done. Suggestions are for you and others preparing your case are just that, suggestions. It is not an impossible task. Remember, you have paid into this fund your whole working life as have all of your relatives over the years. If you can't work, this fund is to help. Believe me, you won't get rich, but it does help.

Sending a grouphug your way. Let us know how you're doing, OK?

[Melanie S]

THANK YOU! THANK YOU!! THANK YOU!!! All of your advice is super, and listing it out helps. It is amazing to me...just a year ago, I was hurting, but would have been able to knock all of this out w/o a thought...now, it is a big, overwhelming process. Thanks for the info on deducting meds and such from the income...I didn't realize that, and that is $150 - $200 / month, so that helps (helps...hahaha...funny what is helpful nowadays lmao ).

I don't know how I could plan to be out of work for that time, but maybe it would work out if I could guesstimate...if I planned on a year, and my family could each pitch in a bit for that time, if it all came together sooner, that would be okay.

Thanks again, and congratulations on your SS win, that is terrific. I know it is usually just enough to get by, but hopefully the chance to relax a little bit more is helpful. Take care, and keep us posted on your progress, too. hi