Quality of life

I am 32, I have SLE, and a few of his friends. It takes all of my energy each week to work 25-30 hours at my job. Leaving me with nothing beyond work. Which has me thinking; if our lives really are cut short, why waste them? I have given serious thought to applying for disability. Thus allowing me to work less hours and be able to spend my energy in places that really matter. I don’t have a husband, child, or even friends to speak of. There is no room for those things when I have nothing left of me after working. I want a life, what little I can have for how ever long I can have it. A girl from work is getting married this month. She has a mild form of SLE. He guy adores her and knows how dangerous her Lupus can be. He accepts that and loves her. I want that. I want to have someone love me like that. I don’t have energy to meet someone, let alone spend time with them. I don’t have energy to get online to talk to you guys most days. I am too tired. Too much in pain. Too out of it. I want a life.

Have any of you applied for disability?

Mindy

Unfortunately to qualify for SS disability you have to PROVE that you are incapable of earning $900 gross a month (maybe even less) at ANY job. Even a Walmart greeter makes more than that or a telemarketer which requires pretty much no effort of any kind. There is little to no sympathy from the government that you don't feel well or that your quality of life sucks just a hard core look at whether you are physically capable of working if you have to.

Mindy, first, big hugs. How you manage to work as much as you do amazes me, I often am pretty stationary and feel non productive.

I tried to apply for disability, but they don't seem to think raising your children and being at home with them even when they have medical needs counts as having worked. I Can't be much help, but many here are in the process of getting disability, or already have it. Someone will come along better able to help you.

I so get wanting quality of life. We need to live well and fully like anyone else. I have been racking my brain trying to find ways to be out and about more, things I can do that I would enjoy, and possibly make friends while doingthem. Despite many years of a list of diagnosis, I managed to keep a few friends, until lately. Being unwell helps sort out the true friends from those people who don't deserve your time and energy.

I'm so glad you posted and reached out, a very healthy way of coping with how health issues affect us. Everyone here understands and faces their own issues, has either been through all this, going through it, or lucky enough to not be dealing with it as severely as some of us do.

If you can, try to find a support group, real life, and you may find it useful.

Wish I could be of more help.

Hi!

You need 40 quarters of work history. You really also should use a disability atty. They work for a percentage of your award. It is a contingency fee. They win or get nothing.

I got SSDI based upon arthritis - it was before my SLE diagnosis.

Your doctor needs to support your effort and document your disability. You also need to whine and complain a lot to the Soc. Security doc they send you to.

All you need to prove is that you are sane enuff to handle your own finances. A pleasant talk with a shrink proves that.

As I said, I got SSDI when I was less disabled than now! It can't hurt to have a free consult with an atty.

Good luck.and let me know how it goes!

Regards from Rosie

Did you try to get SSI?




ohsoperplexed said:

Mindy, first, big hugs. How you manage to work as much as you do amazes me, I often am pretty stationary and feel non productive.

I tried to apply for disability, but they don’t seem to think raising your children and being at home with them even when they have medical needs counts as having worked. I Can’t be much help, but many here are in the process of getting disability, or already have it. Someone will come along better able to help you.

I so get wanting quality of life. We need to live well and fully like anyone else. I have been racking my brain trying to find ways to be out and about more, things I can do that I would enjoy, and possibly make friends while doingthem. Despite many years of a list of diagnosis, I managed to keep a few friends, until lately. Being unwell helps sort out the true friends from those people who don’t deserve your time and energy.

I’m so glad you posted and reached out, a very healthy way of coping with how health issues affect us. Everyone here understands and faces their own issues, has either been through all this, going through it, or lucky enough to not be dealing with it as severely as some of us do.

If you can, try to find a support group, real life, and you may find it useful.

Wish I could be of more help.

Mindy



I just could not make it through working each day either and there became a point where my rheumy told me that I needed to stop working. I didn’t want to listen because I loved my job! Then about four months later, at work, I developed vasculitis and that was it. I stopped work at the direction of my doctors. Hired an attorney and filed for disability. Shortly there after I was approved. I think it all depends on the conditions you have and how well it all has been documented by your healthcare providers. You should speak with your doctor and see if they feel it is appropriate to do a disability assessment to help you qualify. I have been out of work now for a year and my health is much better for it. Sometime we must listen to direction and our own bodies.

By the way my attorney did nothing for me! I filled out all the paper work and questionnaires in full detail. All he did was file the paper work(faxed it to SS) for me. The attorney’s paralegal actually called me to tell me in the future not to be so detailed in my answers to SS’s questionnaires. Lol! I was approved right away, so there was really nothing for the attorney to do! No appeal, no exams, no nothing. Solely based on the doctors’ disability assessment, completing the SS’s forms and my history I was approved. Yes I am one of the lucky ones! The Good Lord had my back on this one.


As far as a Significant other. I think if you get yourself in a better place first it will all work out when you least expect it too. I have a great soulmate, but the lupus has been hard on us both. JUST BELIEVE and have FAITH. Anything is possible and dreams can come true.



Best of luck and I will be thinking about you with positive thoughts…



Deenie

Not eligible for SSI, my husband makes a decent living, and he is very good to me. Not worth losing a loving marriage over a few bucks from the government someone else needs badly. Thanks for asking though!

MBPP said:

Did you try to get SSI?


ohsoperplexed said:

Mindy, first, big hugs. How you manage to work as much as you do amazes me, I often am pretty stationary and feel non productive.

I tried to apply for disability, but they don't seem to think raising your children and being at home with them even when they have medical needs counts as having worked. I Can't be much help, but many here are in the process of getting disability, or already have it. Someone will come along better able to help you.

I so get wanting quality of life. We need to live well and fully like anyone else. I have been racking my brain trying to find ways to be out and about more, things I can do that I would enjoy, and possibly make friends while doingthem. Despite many years of a list of diagnosis, I managed to keep a few friends, until lately. Being unwell helps sort out the true friends from those people who don't deserve your time and energy.

I'm so glad you posted and reached out, a very healthy way of coping with how health issues affect us. Everyone here understands and faces their own issues, has either been through all this, going through it, or lucky enough to not be dealing with it as severely as some of us do.

If you can, try to find a support group, real life, and you may find it useful.

Wish I could be of more help.

Poobie…good info…that sucks. The govt shells out finacial aid to ppl who are more than capable of working…but here we are sick and on our own.

Are there other programs to help out? I dont want to stop working all together, but get help so I can work a little less and still pay my bills. There are not may. I don’t even have credit cards. I have simplified my life down to bare bones. There has to be something I can do.

SSDisability works for me just fine. I also have a teachers' pension.

I would go for a free consult with an SSDI lawyer. They can tell you whether you are eligible or not, whether or not it is worth applying, and if so what you need to do. It is nice that Dewing3569 was able to get their approval without a hearing, but typically it doesn't happen that way -- typically you apply, get turned down, appeal, get turned down again, and then go before a hearing with a judge -- at which point having that lawyer becomes VERY VERY helpful, let me tell you. And of course, there are good lawyers and bad ones - if you go to one and get a bad feeling, see another one. But I can tell you, I won mine (before my lupus diagnosis - with fibro and spinal problems) at the hearing, and I know the attorney deserved a lot of the credit. Many other people in our area much worse off than me get turned down - and it's only gotten harder to get approval as the years have gone by. Good luck with it all -- I truly sympathize with the quality of life issues. I don't work anymore, but my quality of life still is pretty crappy. *lol* I wish you all the best (and some extra spoons!)