lupus and disability

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sarazakmom
New Member


Date Joined Jan 2007
Total Posts : 11
   Posted 9/7/2007 2:05 PM (GMT -7)   
anyone have any info on disability benefits available for people with lupus? i currently work full time and am a single mom and can feel myself slipping. it's all i can do to get through the work day. by the time i get home i am so exhausted i can't even think about the things i need to do to maintain my home and kids. everything piles up and i get so overwhelmed, somedays i can't even make dinner. i would even settle for part time benefits and work part time.
i just don't even know where to start. any help would be greatly appreciated.
thanks

sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/7/2007 9:13 PM (GMT -7)   
Hi, Sara. I am disabled from a car wreck and have been on disability for 13 years. Unfortunately, I can't tell you anything about how to proceed with applying for it because my family got everything started for me while I was still in a coma so there was no one for the administration to argue with. A man who had previously worked for Social Security came and spoke to my local support group earlier this year. He said if you need it, do not give up; that is what it is for! There can be a lot of read tape and several denials. I know he said if it does go before a judge that you will need representation (that was his current job when he spoke to my group). You might look for a disability representative in your local yellow pages for starters. Maybe someone else who has been through this part will be along to offer more advice. Good luck.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/7/2007 10:45 PM (GMT -7)   
I can say you need to have enough credits for SSDI and not working. Then benefits start 6 months from the date you last worked- but don't wait those 6 months to apply. It can take as much as 3 years or more depending on your case. You need your rheumetologist behind you or you will lose. I am on SSI because I lack enough credits for SSDI. It took more than 2 years to get to the hearing and it was only there that I got approved. Then it took a while to get the money started coming in. Some states have disability programs. I would talk to my doctor, read as much as you can on SSDI and SSI then if you can survive the process I would go for it. If you have to live on welfare for a while until they approve your case then do it. The money will be paid back out of the past due benefits (only the months you qualified for SSDI or SSI and only a certain percentage). Your kids may even qualify for a monthly payment if you get SSDI. Just be sure you get all the information before making your decision. If your job is one that could be done with only a phone and computer you may be able to get your boss to let you work from home for at least part of your hours. If not then perhaps a more flexible schedule. If you get child support check into if it should be higher and if not then see if you can get it started. I wish you luck, the disability process is hard and can make us sicker but once the benefits start it is a huge relief. Also you need to see what help you can get so you can cut back hours. Some states give medicaid or other insurance to kids from families within certain income areas. This is often much higher than you expect. If insurance is making you need to work more that could help. Also many states have medicaid or other programs available to the disabled before they get SSI or SSDI. You may qualify for food stamps or WIC (if your kids are under 5). Check with local agencies that help families- food and clothing banks, Salvation Army, Helping Hands, etc... to see what assistance they can offer. See what kind of help your doctors can offer. If medication costs are the reason you need to work full-time then check into some of the programs listed in the posting on that topic. There are many programs to help. Heck tell your doctor about the fatigue and inability to function after work, there may be medication or other changes that could help. I wish you the best.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


fancyface681
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/5/2007 6:58 PM (GMT -7)   
What is the differnce between SSI and SSDI.. I just applied for dissability for Lupus as well. I have not been going to hardly any doctors because of no medicade so I suffer and have been to the hospital many times. All they say is that I need a Rheumatologist and they prescribe me Anti-Inflamitory medications. When I applied for disability they said that they needed medical records and all I could supply them with is my hosptial records.

I had been to the hopital like 15 times in one year.. Well I also have ovarian cysts and on IRON for Anemia which is a prescription of Repliva my mom buys and I can barely afford it. After being diagnosed with the ovarion cysts.. Long story but I went to the hospital for this and they did nothing as well.. I had to get a relative to help pay for the ultrasound and dr to see why I was bleeding heavily for a year straight..

Finally someone in the family helped and after suffering for a while and I am now on birth control for that.. It is suppose to hopefully diminish and shrink the cyst.. The dr wants me back in 3 months for another ultrasound I don't think I will have help this time so i can't go. i am constantly worrying about my healthy and I am desperate for medicade and I have no children so will not get approved unless I apply for disability which I need to anyway because I am broke struggling and not working.


I am young at only 22 and I only had one job my entire life I worked for a gas station for 2-3 years straight.. I was a hard worker.. BUT do I have enough credits?? I am scared and worried I want get approved.. I know someone who said they got a lawyer which is quicker to getting approved and probably better then appealing... I just do not know what to do and don't know where to get medical help.. My symptomes include back pain, BAD feet pain, swelling, anemia, tiredness chronic fatigue, nerve type pain, flushing, high fever, and much more.. I need to have tests done but can't afford it and don't know where to turn.. Anyway and all avice will be greatly appreciated.. Thank you!

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/5/2007 7:08 PM (GMT -7)   
Hi Sara . . . I added a link in the "Lupus Resources" about Lupus and SSD. You can click on Lupus Resources in my signature. I hope you are feeling better.


Fancy . . . Did your lupus-like issues escalate when you started taking the pill??? Lots of us can't take estrogen because it can really cause or increase symptoms. Just a thought.

If click on the "Lupus Resources" link at the end of my signature, there is a post in that topic that lists several websites to get help with paying for prescription meds. Also try the manufacture of the drug. You'll have to fill out some paper work, but it is well worth it if you qualify for free or low cost meds. Also, talk to a few different rheumy offices and see if anyone can direct you to some local aid for help with your doctor bills. I'm not sure how all that works, but the doctor's offices might know because they may have other patients in the same boat. Meanwhile, one of them just might decide to help you out. You won't know unless you call every rheumy within driving distance. Also, another link in my signature for Lupus.org. Maybe they can direct you to some help. Maybe some of the others will have some other ideas for you. DON'T stop trying to find help!!

I hope this helps.

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/5/2007 7:41 PM (GMT -7)   
Friends,
SSDI and SSI are different animals.

SSI - Supplemental Security Income - pays benefits based on financial need. This is not related to whether or not you are disabled.

SSDI - Social Security Disability Insurance - pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes.

If you are disabled, it does not matter what your income is or was, SSDI applies and will cover you if you and your doctors can convince them you are disabled and cannot work, AND you have paid enough into SS to be eligible AND you can meet whatever silly rules they have hidden away.....

I hope this clears up some confusion.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2007 12:04 PM (GMT -7)   
Thanks Lynnwood . . . . That is extremely helpful. I wonder if we could start a topic regarding SS related info like the post above and have people include helpful websites (like .gov stuff) so we could distill the topic and make a permanent post in the "Lupus Resources" topic.

What do you think?

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 10/6/2007 1:44 PM (GMT -7)   
I'm in the process of Social Sec. dis... I applied in April and got my denial letter the first of Aug... I am going to the SSoffice tomorrow to appeal...I have 60 days to do so and I'm about out of time... I contacted a lawyer.. She was a high school classmate of my son she told me to just go ahead and appeal. That it is a long process.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/6/2007 1:58 PM (GMT -7)   
Rosie -

I don't think anyone reads the resource links unless we point them there for a specific topics. The quote about SSDI vs SSI was directly from the main SS web page fir disability. www.ssa.gov/disability. It may be best to just point folks there, rather than try to maintain a current copy of stuff on HW.

Sorry I can't help with this for the next fews days -- just had a burst pipe in bathroom right above kitchen and may have permanent damage to both. Plus a million other things I have to do -- no time left to have LUPUS!!!!

Cheers, You guys can always email me if you need something, I don't know how much I'll be able to keep up this coming week.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Post Edited (Lynnwood) : 10/6/2007 3:03:21 PM (GMT-6)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2007 3:21 PM (GMT -7)   
OH NO!!! Oh Lynnwood, that sounds like a flare waiting to happen. Don't forget to up the pred!!! I hope you'll get some help with the clean up!!!

Don't worry about HW . . . just take care of you!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/6/2007 5:21 PM (GMT -7)   
Hey y'all.  I have been battling SSDI for almost a year. (lacking a week or so).  I got denied and appealed.  I got denied again and contacted my Congressman.  They have helped me tremendously.  I finally got approved at the state level.  It has now been sent to a regional office for verification.  (Please pray)  It isn't nothing nice to deal with these people,  at least in my neck of the woods!  My congressman's office has been a God-send!  They've obtained medical records that I couldn't afford and stayed on top of the case!
Get luck!  God bless and keep you,  Judi

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/6/2007 7:32 PM (GMT -7)   
All I got from my congressman was a form letter...what state are you in? I have been waiting to have the judge hear my 2ond appeal for almost 2 years now.

And how (write,call,email?) did you contact the congressman and what did you tell him/her?? I sure could use some help from mine.

Thanks,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/6/2007 7:45 PM (GMT -7)   
Lynwood,
Call and find out if they have any idea when you're scheduled for your hearing. I did that and found out they had no record of me waiting for a hearing.
Good luck!
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Toradol, Percoset, Loratab
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/6/2007 8:53 PM (GMT -7)   
My attorney & the congressman both verified over a year ago that I am on the list to be scheduled....good idea though for those who don't already have verification

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


fancyface681
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/11/2007 9:05 PM (GMT -7)   
What I do not understand is how some people can be approved for no reason and others are truly disabled and not get approved. I know a lot of people who have no problems and claimed depression and got approved or whatever when they are really not disabled and they say it is so hard to get approved then how do these people get approved!!! ??? ..I know a lady personally who works and makes 60,000 a year cash working and has disability and there is nothing wrong with her, she said she got a lawyer and it was easy! She should be in trouble for working and getting SSDI also!!! She said that if you want to get approved you must get a lawyer & I just think that it is sooooo unfair that she works and gets it and I do not work and I am really disabled, cry daily from Lupus and other problems and she gets it. I know another guy who applied 4 times and got approved on his 4th attempt and he did not appeal and he is 24 years old, and claims deppression also as well as Bipolar but he works also under the table and I cannot work period so I do not think he is bipolar or disabled if he can work! I guess getting a lawyer is the best bet, many will not make you pay until you get the money owed from SSDI and then they take a percentage of what your payout is..

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/12/2007 7:36 PM (GMT -7)   
Getting SSDI can be real hard. I applied and it took over 2 years before I had my hearing before the Judge. I've been awaiting the Judge decision now to weeks. My attorney stressed to me that we had to prove I was disable prior to the expiration date of my SS insurance. The fact that in the 2 years I've been awaiting my hearing, I've become 100 times sicker and now have cancer in addition to my lupus, doesn't count in the decision the Judge will make.

I feel my attorney will be paid 25% or up to $5300 dollars of any back pay I get and he's hardly done anything for me. I've only talked with him 2 times prior to my hearing date. You're right it's a shame that there are ppl out there who collect SSDI and really don't deserve to have it.

I wish you well and it sounds like you'll need an attorney. Good luck and I hope that you begin to feel better soon.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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