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View Full Version : New to ANY blog. Recently diagnosed but been sick a long time. Disability problems



jennifer612
12-01-2012, 09:55 AM
Hello to all. I have never been on a blog and not sure how this works. I have probably had lupus most of my life. I am almost 42 years old and finally got my diagnoses in August. I also have raynaud's and I strongly suspect sjogren's. I was started on .6 ml injections of methotrexate, plaquenil, folic acid, magic mouthwash in August. It is definitely helping, but I am still not able to function for a whole day and while I am not sick everyday with some sort of awful infection (hooray), I am sick enough not to be able to function for an entire day. I have a 5 yr. old daughter that was very sick until this past year. She suffered the effects of a pregnancy with a mom with undiagnosed lupus. She was born prematurely, we both almost died and she had 3 brain hemorrhages.

Long story short (kind of). I worked from the time I was 15 until 6 mos. after I had her. My ex-husband was not able to cope or hold down a job while this was going on and we are now divorced and I have been living with my parents since my daughter was 2. She is doing much better. I have gotten worse over the years since her birth, but have been one of the lucky ones that is sick almost constantly, but my blood work looks mostly fine. I have only had 2 postiive ANA tests ever and they were weak. This past May, my ANA was negative but my Smith/RNP antibodies were elevated (slightly). It finally got me the diagnosis.

I have been declined for disability because my diagnosis was made 8 months too late. Evidently, no matter how long you pay into the system, you have 5 years to file for disability before you have to work 10 years to qualify again. Does anyone have any advice. I am preventing my parents from retiring and it is very tough to be in this situation. Could really use some advice.

God Bless all of you!
Jennifer

tgal
12-01-2012, 05:11 PM
Hello and welcome to WHL. We are so glad that you found our forum. You have come to a place filled with wonderful, caring peoe that understand what you are going through. The weekends are the most quiet around here so don't be discouraged if you don't get many responses right now. I promise the people here are wonderful and they will be talking to you when they log in.

please make yourself at home and I look forward to getting to know you!

steve.b
12-02-2012, 08:10 AM
hi jennifer,
i am from australia........
so i cannot comment on your welfare system.
but i did want to say hi.

tgal
12-02-2012, 09:04 AM
You can't get SSDI bit you can get SSI. You don't have to have any work history for that and, as a bonus, you don't have to wait 2 1/2 years for the Medicare to kick in like with SS. You get Medicaid instantly. Just like filing for SSDI you will most likely have to get a lawyer that specializes in it though. The good news is that they don't cost anything unless you win and then they only take a piece of the back payment you get

SleepyInSeattle
12-02-2012, 10:28 AM
Hello and welcome - I am sorry you have this awful disease (I also have Raynaud's, Sjogrens, and also APS), but glad you found us. People are very supportive here.

I have had a huge improvement in my symptoms since getting a good medication routine going....I hope you have the same good luck with it. Sometimes it takes a while, so don't give up!

Saysusie
12-02-2012, 04:00 PM
Just wanted to add my welcome to those you've already received. Tgal has given you great information about SSD and SSI. Please let us know if you need any further information. I am glad that you are here and I wish you the very best!

Peace and Blessings
Namaste
Saysusie