I'm so sorry about everything you're dealing with Wiz . It is so hard to decide what to do. Your body had already decided for you though, your brain just has to catch up.

I'm on LTD with no hopes of going back to work . It's been very hard for me to be home full-time. I suspect that it's because my entire social life was connected to my job. I don't think that will be a problem for you though . It isn't fair that this dam disease can rob us of so much! I wish you luck and lot of s.

Stopped working shortly after I turned 52 (2003), wasn`t dx`ed with anything other than chronic fatigue syndrome at the time, but it made it tough to do my job as a truck driver.

I didn`t file for SSDI until 10 months after I stopped working, just had hopes whatever I had would go away. Just continued to get worse and finally a correct dx of PPMS in 2006 and SSDI awarded in 2006 after a 19 month or so fight, but back pay to the last day I had worked.

((((((((((((Wiz)))))))))))):circlelove :

No words of wisdom just hugs

I say tell the DH and the doctor and go for SSDI.

Everything you posted says (to me) that you are ready to move in a different direction.

As you well know, you are more than your work. I say if you can, do it and see where life takes you next.

Just my never humble opinion...

Wiz,
1. Talk it over with DH if money is a problem. Otherwise, it's your life to live and decide about, not his. He doesn't live in your shoes, no one does. Even if he loves you to pieces it's your body that suffers.

2. Find out the amount of SSDI you will get. A ball park figure is good.

3. Figure your medical costs and of having no ins, if you have it now. You don't get medical ins on Medicare for 18 months. Ask Kitty. If you can get COBRA for 18 months and afford it, that might work.

You are on expensive medication, it is on your DH's plan?

If you worked part-time you get credit for only pt hours and pt money. They do ask about all your past jobs and where, when, what you made and what you did.

They want pay stubs, so if you had your own business that might be an issue.

If you worked at home, that is an issue too. Look on SS sites on forums for disability Q & A's you might have.

Then they ask the health questions, over and over, sent in questionnaires. Copy them before you send them back to them, because they ask the same info over and over in different wording.

They want copies of medical tests, doctors reports, everything you can get together helps.

All this is done after one meeting with the SS people in person, or online if you want, or by appt. by you calling them. They are nice and it isn't a bad process. If you paid into it, you deserve the money back when you need it.

Wiz, I wish you lots of luck. Go for it if you can afford it. It took a few years to get used to being home, but I couldn't keep up.

Even driving to work, when I left NYC and went to work by bus was so tiring. On the bus I could sleep. But not while I was driving everyday for an hour each way though.

It won't be an issue with DH, he'd like it if I quit working. I know how to be extremely frugal when necessary so I know we can do it. The home business is really for my sons, and only one is working there now, I haven't been an employee. He does any work that comes along.

I just think it might be a decision I'm forced to make, I don't know if anybody would hire me for the kind of work I do. Who wants somebody that is always half asleep, especially when doing accounting and administration tasks? I don't even think I would hire me if I had the choice for somebody else who was young and energetic.

I'm on my husbands insurance that he has through his union from the IBEW. It's expensive but it would cover me until I'd get medicare.

If I could find a job that would fit with the accommodations I need, I would take it, but I don't know how long I could actually do it to be honest.

The past few years I've noticed myself transpose numbers sometimes. I had ways of checking myself, but would I be able to do that in a new job? Would they put up with me on my slow days (which is really everyday now) or my sick days? So many unknowns, but I'll talk to my MS neuro and also my new PCP when I meet with him on Monday.

I am 20 years old and on SSI. I applyed for over 30 jobs and couldnt do any of them because of my poor vision and the drs tell me its just going to get worse. I feel like crap have to live on SSI. and it took me about a year to get it. I felt so bad watching everyoen around me go off ot work and me haveing to set at home doing nothing. but i am doing something about it now i am going to go to the mcdowl center for the blind and start learning how to do stuff now b4 i go blind or if i ever do. When i complet the training there they will find me a job that i can do. I have to wait until my daughter is about two years old or so but i am going. I went once for two weeks just for the evaluation and loved it i started learning brail and everything it was great. But dont feel bad SSI and SSDI is there for people who cant work or who needs help. I hate to say it but with out SSI I dont know how i would be makeing it.

Go for it, Wiz! If you are approved, it doesn't mean that you have to take it. Just start the process and see where you are at when you are approved.

Make sure your drs. (all drs.) are on board with your decision. That is so important when they review your medical records and when your drs have to fill out their portion of the paperwork. Additionally, if there is any testing that would support your inability to work, have it done. (Neuropsych testing, nerve conduction tests, fatiguability, etc.) These tests will help as well. I found the questions to be geared towards those with injuries and/or mental illness. So having these tests will help both you and the dr with this process.

They also require someone who knows you and sees you on a regular basis to fill out a form. Your DH would be a great person to do that part. Have him keep notes so that when the form comes it will be easier for him to fill out. (I had my mom do it as DDs were too young).

Keep notes yourself to help you fill out the paperwork. Include every detail. This is really important. Sometimes we only look at the bigger symptoms but when you start going in to detail it helps. I got denied the 1st time, got a lawyer, and appealed. They gave me this advice. So I did right, down to the fact that bras irritate the hug, when sensory symptoms hit I want to just tear my clothes off, I can't wear closed toe shoes as it causes spasms, etc. When I wrote it out, thanks to cog fog, which may have worked in my favor, words were left out and some I didn't even spell right and a few of the questions I didn't even answer correctly. I just left it that way and submitted it. I was approved in a month. LOL

My decision was far easier to make. 9 months after my 1st major flare and and 3 significant flares, I still was not able to walk well - falling all the time, wall walking, couldn't read (even children's books were too difficult for me), etc. I knew then that this was not going away and trying to support my DDs on $700 a month was really a challenge and stressful.

While on SSDI, you can work but can make no more that a certain amount ($700 ??? a month).

Wishing you the best of luck.

I'm so sorry for your fatigue, Wiz.

What sort of home business do you have?


Now that you're approaching a new chapter in your life, have you considered volunteering for something? Volunteers can get away with stuff that paid employees can't. And you could still be involved in something that brings you joy and a sense of usefulness.

Good luck to you, friend.