SSDI application vent

[crazymama30]

Holy cow, how do they ever expect the people who are applying for SSDI to fill this **** out? I filled out the online application, and now have 2 packets with about 50pages of info to fill out. I did my portion, and will start on husband's part with his help. There is no way he could pay attention long enough to do this, let alone for now stay awake long enough as he has been "passing out" (for lack of better term).

He has seen a neurologist, a pulmonologist, cardiologist and next a doctor who deals with narcolepsy. The neurologist said it was cardiac as well as the pulmonologist. The cardiologist cleared him and said it is neurological. The cardiologist is the only one who has seen one of the events happen. He has been having episodes every few days to several times a day, at times he is only awake for 4-8hrs a day.

Alright, just had to get that out. Now back to the bleeping forms!

 

[KTMom91]

I think they want you to give up. A good friend of mine (severe ADHD, hears voices, PTSD, etc.) got so frustrated with the whole thing, even though we were going through the paper mess slowly (because she kept changing channels in her head) that she never finished them. It was more than she could deal with.

Many hugs and lots of strength.

 

[DammitJanet]

It is extremely hard. One thing to remember, keep copies of everything you fill out. You will need them. They will send you more forms that are exactly the same questions again or they will lose them or something and if you have the ones you have already filled out, it makes it a ton easier. At least then you can remember what you said the first time. Also...remember to say that it is hard to fill this out so that he cant do it and he is having to have YOU fill it out for him. I had to have people help me or I had to put on the papers that I could only fill these things out in bits and jags. I changed pens and pencils. It is a real pain. Thankfully I had been told to keep copies because I did have to send more in several times.

 

[gcvmom]

Sorry about the blasted paperwork

Were seizures ruled out for husband?

 

[witzend]

Always fill out everything based upon his worst day. Keep in mind that the question is can he work? The answer is that people need someone to be at work when THEY need him to be at work. On his worst day, is he going to show up? Will he give a good days' work? If they're asking about how far can he walk, tell them how far he can walk before he's fatigued, not how far he can force himself to walk.

I only know of one person who ever got SSI on the first try. Most have to have an attorney, who will take 30% of the first check. Since the amount of the first check builds up as you wait, the sooner you get the attorney, the less their payday out of your benefit.

Hope this helps.

 

[Marcie Mac]

Also, if they want you to provide medical records, make a couple of complete copies - I cannot tell you how many times they have lost SO's file - we finally had to go to the local congressperson and he was the one that finally had it pushed thru (in a day) after two years.

Marcie

 

[crazymama30]

KTmom--I agree, they want people to give up. I have filled out 4 different packets of info, and have at least one or two more left. Some of the info I had to create a document on my computer as they did not give me enough space to answer.

Janet--I actually had not thought of making copies, I will take all this **** to work with me tommorrow and copy it all. That is a good idea, thanks.

GCV--they did an eeg, but not a sleep deprived eeg and neuro did not think it was seizures. They did one eeg with a strobe light going on in the room, it was really uncomfortable for both of us.

Witz--I have been doing that, they will ask how far he can walk before resting? I say varies, about 40yds. How long can he concentrate? varies, a few minutes to a few hours

Marcie--they sent something that said I should send what medical records I have, did not specifically ask me to get them, said that they would get them and husband signed a release for them to get them. they can get the records themselves, I have enough to do.

Thank you for your input, any other suggestions are welcome.

 

[gcvmom]

I had to ask about the seizures because husband's symptoms were first thought to be cardio-related because the neuro could not find anything abnormal on the EEG (his was not sleep-deprived either). Then the cardio ruled out the usual heart-related suspects and blamed it on his ADHD medications. Then after stopping THOSE medications, the symptoms continued and his GP thought it was panic disorder. No wait, maybe it could be an inner ear problem! No, that's not it -- I know, it's ALLERGIES! (Yes, they actually suggested all those possible causes).

Long story short, it took a lot of digging on my part and I'm actually the one that came up with what the symptoms actually represented. And a second opinion with another neuro confirmed my suspicions and gave us an actual answer for why it was all happening.

I hope he gets the SSI soon. And I hope you can help him figure out what's going on. That would really bother me to not know.

 

[GoingNorth]

The only person I know to have gotten SSDI on the first application was my late husband. That was because he was terminally ill. I, like most people, had to use a lawyer, and wound up going before a judge

 

[crazymama30]

I am done with all the packets, I think there were 5 in all. I will make copies today and send them off. husband sees the doctor who specializes in narcolepsy tommorrow, and if that does not pan out I think we will go back to see primary doctor and regroup. His symptoms fit so many things, I really do not know what it is. It could be seizures, could be a lot of things. He had 2 or 3 episodes yesterday, I lost count. I am scrambling to find rides for difficult child home from school on my carpool days as he does not have bus service as it is a charter school.

husband has been grumpy lately (and rightfully so) but he has not gone to therapy for the last few weeks as he has had so many other appts that his therapist told him to come back when all this is figured out. She has not known him long enough to know that if it gets figured out it will take a very long time. He did say yesterday that he would call today and make an appointment to see her and maybe also the therapist who specializes in chronic pain that he was seeing. I told him he was nicer when he was seeing them.

 

[crazymama30]

by the way, I am planning on him getting denied and getting an attorney. husband agreed to let me handle this, and trust me I will handle it. I am tired of messing around, and we need the money so bad. I don't care how much the attorney gets, husband needs this, we need this. I also think the 2 psychiatric hospital stays will be in his favor.