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lotuslupusbutterfly

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 #1 
diagnosed at 13, barely made it through high school and college.   Started nannying after college, met my husband got married, had 3 subsequent miscarriages and since then my lupus has gotten worse.   I had to stop nannying, then I worked retail for two years, but then I tore my ACL and couldn't work more than 30 hours, then it was 20 hours, then retail was too difficult.   Now I work 20 hours a week at a minimum wage as an office assistant. but even 20 hours is too much, migraines, back pain, joint pain, my hands are disfigured.  and it's not enough money to survive on.   
I can work a little but sporadically and it's not enough to pay the bills.
I'm sure I don't  have it as bad as everyone else, but what kind of support is there for those of us stuck in the middle?
I just don't know what else to do aside from apply for disability and pray I can make my case enough.
I'd be happy to take other avenues though if i knew they existed.  Any advice or suggestions welcome.
LupieD

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 #2 
I'm not sure what other avenues there are........work or disability is all I'm aware of.

My biggest word of advice to you would be don't try and go it alone. You'll likely get declined at least once. Go straight to a law firm that specializes in SSDI. All those I know of charge you nothing up front and if you don't get approved, they don't get paid so they definitely have a vested interest.

It can't hurt to apply. If things change for you and you want to go back to work, you can always do that but at least this would give you some peace of mind and allow you to focus on your health.

Good luck to you!

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Cakelady

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 #3 
Hi I completely agree with Lupie. Get an SSDI attorney they will he able to help you. Also you might want to look at your local LFA chapter for some additional help.


Good luck







Note: Please excuse any misspelled works or grammar errors. I have CNS lupus and brain lesions and use a program to help me type

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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
lotuslupusbutterfly

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 #4 
Thank you Lupie and Cake Lady - i appreciate your suggestions and support
Mr. Bun

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 #5 
Being in Canada, things are a little different here.

However, what is NOT different, are the times when you are up against a wall, with no money in the bank, feeling sick, filling out forms, being made to feel like a fraud, losing friends, shopping at the food bank, facing eviction and hoping, hoping HOPING for light at the end of the tunnel.

It's frustrating not only having to deal with not feeling well...... but also having the added stress of a bleak financial situation.

I can only say this.....my sister helped me through it.  Thank goodness for her.

The people here helped me through it.  Thank goodness for them.

Just this month, I was successful in getting disability.  Took me almost a year.  And there were dark days.....but don't let them get you down!!!!

Take care,

Bun
lotuslupusbutterfly

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 #6 
Bun,
 Thank you.  it's all so much harder to justify in my head.  I've had lupus since I was 13, when i was in school it was all "i can do anything"  because even though i had lupus i had unlimited energy of an adolescent and no financial responsibilities. and now I've looked back at all these years where I've had to take the easy road, because the hard road wasn't just hard but physically impossible.  
and I feel so defeated.  I've been set up for failure since I was 13 and I just now, at 32, figured that out.   
I'm smart, like IQ test borderline genius level, but none of that matters because I'm exhausted and brain foggy and stiff and sore and can't work more than 15 hours maybe if I'm lucky.  all that smarts is useless. and the only jobs that offer a 15hour schedule are min wage.  
thanks for the support.





Mr. Bun

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 #7 
Hey,

yw.....it's a hard decision.....and really.....not much of a decision....when your body is betraying you.  

I worked for 31yrs.....hard, physical labour, unloading liquor trucks.......and then......I broke my hip......had my spine fused.....got colitis....started bleeding uncontrollably...extensive brain lesions.........and my sister actually had to talk me into applying for disability.

and I haven't even included the lupus skin issues throughout the whole ordeal.

she said....you're killing yourself.....and it was my pride that kept me from giving up my job.

I am living now.  It's a hard journey.  You can do it.

Bun

(edit: lost my teeth and am going deaf too....forgot that.....lol)
redhigheels

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 #8 
Hi guys,I know how hard and stressful it is to get disability, it's even hard to get disability if you are under the age of 50, here in NY there is a waiting list of over 2yrs but one thing I can tell you, when you finally get to see a disability Dr take someone with you as your caretaker let the Dr know that you have a caretaker with you and let that person help you through your exam,

Good luck to you

Mr Bun I wish you the best and I hope you are feel better
Mr. Bun

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 #9 
I'm ok.... I could have it a lot worse.

I have a good life:0)
Bill H

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 #10 
My late wife was on SSI for MS. It was very difficult to get the SSI. We ended up getting an attorney case settled quickly after that. The Good Thing is so long as you continue to meet there restrictions you get pay from initial filing. I do not know if law has changed but attorney was limited by what they could charge us.    
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