Serce, Your letter opener story is kind of funny, you have to admit. :0)

Half the time, I leave the house with my zipper open! Sympathetic strangers will give me a look and whisper, "Hey, buddy. Your fly!"

Almost weekly, I'll forget my belt and have to hold my pants up with one hand while gripping my briefcase with the other. I think I lost a job opportunity a few months ago because my pants kept falling down (and I kept pulling them up) while my prospective employer gave me a tour of the office. I bet they're still referring to me as the " weird pants guy."

Then there are my problems with numbers and dates: I always know what month and day it is but I ALWAYS have to look at a calendar to figure out the date. Also, I have days where I use the word "thing" a lot because I can't recall simple words. "Hand me that shiny thing next to the red thing, would you?" means "Hand me my keys, next to the bowl of fruit." Sheesh.

This all sucks so much, sometimes you can only laugh. Hope the rest of your week goes better, friend. -- Jeb

The process for getting SSA disability is intentionally difficult. I know a doctor who has CFS and can't work. He's been denied disability because his payments would be so high. Well duh, he was a doctor. He's in bed most of the day.

I'm glad you have someone helping you. Is Allsup in the same state as you? I've been told the process can vary from state to state. The money comes from the Federal Govt. but the states do the process so it's a control thing for them.

I was denied the first time which is pretty much standard. I think they want to see how badly you want/need it. For the appeal, you need something new. I started seeing a therapist for the depression. That was enough to allow an appeal. I submitted all the forms that I had submitted the first time. They scheduled a five hour psychological test. I did it in three sessions. When I read the report I sobbed. My IQ went from 135 to 85. I had all sorts of cognitive issues and memory issues.
But, that's what got me disability. I'm sure they took one look at the report and did not want me in the work force LOL
Lawyers can't charge anything until you get disability and then they take a percentage of the lump sum you get.
I was told to get a lawyer for the appeal and I did. He did nothing so when I got his bill I was stunned. I called him and asked what he had done to justify billing me? He said he didn't do anything. He said he couldn't get involved unless it went to court. Then he said he had told us that. I took my husband expressly to take notes and to advise me.

I told him about the lawyer and he said he had heard him say that but since it didn't seem to bother me he didn't say anything. So make sure that whoever goes with you anywhere can take notes and explain everything to you.

Your doctor's office should be able to send the relevant medical information to the SSA. They may not accept them if they come from you. Also have any doctor who has treated you write a letter detailing your symptoms and explain the diagnosis and how it effects your daily life.

I know it's daunting especially when you're so sick. I kept thinking that I was doing this for everyone with CFS. Several of my family members think I'm taking money I don't deserve because my husband has a good job. I tell them that if they knew how horrible this illness was they wouldn't mind. My brother insisted it was need based. Mind you he's never dealt with disability. He's a know-it-all. And a high-priced lawyer with tons of money. I told him that if it really bothered him he could send me what I get from the government every month. He changed the subject.

He's my brother but I'm glad we live 400 miles apart. He's very controlling. He's also very image conscious. Our mom is in an assisted living facility and has 4-5 years of money left. He wanted me to bring her to Vermont because "your schedule is clear". He has a "job". I told him that my schedule is clear because I spend my days in bed. And why did he want me to take her? Because when her money runs out, he has a problem putting her on Medicaid. What if his buddies at the country club find out that his mother is on Medicaid? He won't be perfect anymore. But, since I have no problem putting her on Medicaid he wanted to palm her off on me. Mind you my mom hasn't left the building she lives in for four years. He's an ass.

My family has never been supportive in any way. I guess caring wears off after 14 years. I have problems with my back and when they said I didn't need surgery I was disappointed. Later I wondered why I was disappointed? When I have surgery people pay attention to me. I get flowers and cards and phone calls. Even my husband pays more attention to me. How sad is that?

Good luck with your battle against the bureaucrats.

Hugs
Vicki

Hey, new to this (was just diagnosed) and needless to say, have spent HOURS on the net looking at all the facts available. Course...my eyes are jumping all over the place and I feel like pouring a large glass of water in each eye...then try to remember what my log in and username is just to get onto the site. Well, this is definitely an adventure. I know where you are coming from 'weird pants guy'....i have to set my clothes out the night before or I'll end up going to work in my dressing gown (yes, one day had to rush back in because I had slippers on...not shoes). Insurmountable relief to know that I am not going gaga, but now, have to concentrate on HOW to do my job.....
Serce, the only thing I can tell you is that before the diagnosis, I had to write post-it notes and stick them to my dashboard to remind of where I was going to and how to get there. You might give it a try, just, um......keep the windows up:)

Lol...silly things we do could be an unbelievable adventure for 'normals'. I could get lost driving around a corner. Hung the tv remote up in the phone holder and we couldn't find it until the phone battery went dead....

Regarding SSDI, I got mine the first try without an attorney. Not that we want them, but the more diagnoses you have the better....and the more specialists you've seen the better. Vicki is correct. Going to a psychiatrist/phychologist for evaluation is a huge step. Most of us suffer major depression and cognitive difficulties.....but our regular docs don't list them as diagnosis.

Another major point is to keep copies of everything yourself. All tests, doctor notes, etc. You have a right to ask for them (although you won't get the psych ones). Then if the SSA says they don't have copies you can run them off and send them yourself.....or have yours as backup in case they question anything, 'cause our minds sure aren't going to remember.

I'm afraid with the economy and all the government cuts, disability is going to get harder and harder to get, which really stinks. Hope I'm wrong. Hang in there and keep trying, just have lots of patience, and I wish you all the best!

Thanks for the great comments and suggestions. I tried to speed dial a phone call one night, couldn't figure out why it wasn't ringing...I looked at the phone and well, uh duh, it was the tv remote. Hugs to all ya'll as they say here in the south!

what a great share from you all. i still get lost backing out of my drive ,my partener left my job left my kids left and after five years of hell the finaly put me on disabilty pension.and have been on it for 8 years now. the reason i kept going was i didnt ask for this but having it i am entiled to a pension.its our right as human beings.no matter what just never give up. and i have learnt if you dont try you die.

I'm enjoying the useful and funny comments!

I'll add one more: I was having a nice dinner with my partner Monday night, enjoying myself, and suddenly he says to me, "For the LAST time, this is Valentine's Day. Stop calling it Thanksgiving!"

I dunno, maybe it's the full moon that's making my brain fog worse. What can I do but laugh?

Jeb

Have they denied you yet? I think they deny everybody the first time. If so, did you get a lawyer?

I always put the cereal box in the fridge and the milk in the cupboard. It drives my husband crazy and it is getting kind of expensive buying new milk all the time.:)