Life With Lupus

SSD/SSI Update/Rant


So I got denied on my first try to get SSI/SSD they sent me to a doctor for an evaluation. I swear she barely talked to me and did the shortest examination. I don't know how they can tell if your capable of working from the shortest evaluation. It takes forever to be properly diagnosed and treated for lupus and they sit and tell you what you can or cannot handle from a 5 minute examination. I swear it makes me so mad especially getting the denial letter today that I am feeling so sick. I am hurting more then I ever hurt and to see that letter and read it makes me feel so much more sick. I already filed an appeal online. I will try as hard as I can. I would atleast like to go back to college and make something of my self, but how can I afford to put gas in my car or a roof over my head if I can't even handle a two day a week job. I haven't been working in months. They said my past job was a sales associate and that I would be able to be a sales associate. One I think they need to do a little more research on lupus before they make that assumption. Because when I was a sales associate I clearly remember being bed ridden from haven to stand around for hours. I can't even handle 2. I'm not giving up. My fingers are getting stiff from just writing this. I swear we get taken like a joke. I read stories of people on their death bed and still get denied. How could they be so cruel ?.... I fight hard to be positive, but I'm really questioning the world we live in.


Lupus is not well understood either in the medical community or by the public. Even without obvious physical disabilities the pain and fatigue often make work difficult. Criteria for disability is very stringent and is that you are incapable of working ANY job earning a minimum of $900 a month Well a lot of jobs exist that maybe we could do at that level but we sure as heck couldn't live on that income. Have you tried other jobs that don't require standing? Even so good luck in your appeal


Everyone gets denied thier first time, and remember the doctor is on there payroll. You almost always need a lawyer to get ssd, I've only ever heard of instant approval if you're on dialysis or have active aids, everyone else has to play the game. The problem is if you can sit and talk the phone they figure you can work, never mind that yeah maybe you can for awhile but then you'd be out sick, then able to work, out sick and so it goes. I don't know any employers willing to put up with that for any length of time. The people making the decisions need to be better educated on how horrible this disease really is. Good luck with your appeal


Don’t give up too easily. I was denied the first time too. I ended up getting an attorney for my second attempt. It worked like a charm! You don’t pay for anything unless you settle, then they take it out of the first check you receive. They go back retroactive so your first check is usually a pretty big one. Stay positive and don’t let it get to you! With Lupus, that’s the last thing you need! Get yourself a lawyer and let them do all the legwork, you don’t have to worry about it. I hope you have some great days ahead, Good luck my fellow luppie!


I agree with you 100%, it is sad how we get treated. I was also denied when i first applied but like hopeful said i think everyone gets denied the first time. I think you should try again or you could look for a job that you can do at home so that you wouldn't have to leave the comfort of your own home. Retail is a field you shouldn't be in because that does the most harm to your body. All of that standing and walking around for hours can do a number on your joints and body, i should know...i've done it. Hope things get better for you.


Sorry, to here that Chrystal, but everyone gets denied the first time around except those with stage 4 cancer and those on dialysis. I was denied and then did my appeal with an Allsup representative. I had been hospitalized with a Lupus flare and needed a blood transfusion in late Jan of 13. I applied on my own the first time on Feb 22 of 13, denied in May, did the appeal in June and then was approved in Sept. of 13. Just 7 months, I was expecting to be denied at least 2 times and have it go at least 2 years. But I was told because of my recent hospitalization is the reason I was approved so quickly. I didn't have to see any of their dr's either.

Just keep going, don't give up.


i havenot tried for my ssi i am just becomming able as of last weekto draw my unemploynebt and they tell me i have to wait a week in the whole .what the hexx i am not working so why should i wait,i cant apply for ssi cause they wont let you do both at the same time .i can relate and understand the lack of compassion for this disease and like someone said they are on the governments payroll.good luck stay strong and positive and fight for what is yours their are so.many people tht dont qualify and get it and u haave a legitimate reason .


Thanks everyone! It’s so frustrating that we are put through this, but I will not give up! I fight everyday with this damn disease so fighting shouldn’t be that hard lol I noticed Lupus being more talked about publicly. Hopefully we start getting the compassion and help we deserve also.


I would definitely get a lawyer to help you. I am using Binder and Binder. They don't get paid until you win. They take either 25% of the backpay or $6000. which ever one is less. Also do you have problems with the Lupus fog? They call it Cognitive dysfunction. How the heck anyone could work if they can't remember things, in addition to all the pain if you stand to long. Try putting that on your list of problems!


Yea I do get the brain fog also and been diagnosed with Bi polar disorder after I applied. So maybe all that will help…I do have a representative so I am going to call them first thing Monday to fight this.


You might want to lead wi the bi polar diagnosis and lupus secondary. I live in south florida and it’s jokingly known for how easy it is to get mental disability here but discuss that with your lawyer. I used binder and binder too, my lawyer was amazing but you can’t work at all or you won’t quality. Good luck:)


Same thing happened to me and I am sorry it has happened to you too. They also said my husband makes too much money, but they don't take into account the costs of my meds, which are hundreds of dollars a month, and the 20% my insurance won't pay, plus the deductible.

I have no idea what I am going to be able to do for work when I can barely take a shower and am in constant pain. All we can do is keep moving forward, drawing on our inward strength to endure an illness that so few understand or can relate to.


I too heard that first application is always denied...I also know that STRESS is our biggest enemy ...so I chime in with the idea that you need legal rep to get through this. So you can then focus on keeping your body as well as possible. I was too sick to go through the SDI process and ended up renting my home out and moved to a cabin in the woods of Oregon. I was able to get periods of relief and have been more fortunate then most. Prayers coming your way that the path will clear.


Crystal, keep your chin up. It unfortunately takes a long time to get SSI.....My son does case work for SS, and it seems that it takes longer now, because of so many people are out of work, and are trying to get SSI. They don't have the manpower to weed out the people that don't deserve it. While the people that 'need' it are suffering, waiting. It's also political.... I wish you the best of luck, and stay as well as you can. Feel better


Sounds like the SS process is not a fun one. I did hear getting an attorney to assist is the best way to go. They don’t get paid unless they are able to win and get you benefits. Good Luck, keep us posted!


I work in a medical office and you would not believe the people that come through that have SSI/SSD. One of our questions is do you have any major conditions/diseases. Most of the time the answer is no and when you look at their medication list it is maybe one or two drugs. This is a serious problem I know for a fact that with an estimated guess that most of the people who get theses benefits could do some kind of work. Usually the doc will ask why are they disabled and it ranges from nerve problems, (which most of the time they are not on any medication for) to back, to people who you can clearly see that they are pretending to the ones that deserve. This makes me so furious, when I am dragging to work with my Lupus, Sjogren;s, Fibromyalgia, Raynauds, Histoplasmosis in my left eye. I have herniated disc in lower and cervical and 2 yrs ago on Christmas day with me in a Lupus Fog, I feel and broke both arms, yes both arms. But I got up and went to work and the only thing that I could think of was getting back home get a shower and hit the couch, I feel for all of us that the public is so uneducated about and think we are being lazy. I was out of church last week and my pastor called and left a message on my phone that he wanted to talk to me about being more faithful in attending church, That is fine I am willing to talk, but when I/we try to explain our condition they look at us like we are a bunch of whining, lazy people. Sorry for the rant, but I am sure others have been through the same things. Don't give up, you surely deserve what you have worked for.


I feel for you crystal i was barely able to get medical coverage for myself now with my lupus the prednisone has caused me to have 3 spine fractures and all they can do is give me pain medication which limits my driving which cuts my work hours.


Get a lawyer and just so u kno u are more apt to be approved if u have any mental illnesses. I went all the way to a law judge and he told me I was to articulate and denied me. So I got a lawyer and got it in 6 months by putting the focus on my depression


Wow it’s crazy how there’s so many of us going through such similar situations and emotions. I had such a bad flare up this weekend and all I kept thinking was idk how I can live a normal life and how hard it is to just randomly get sick. I tried to go see my father for Father’s Day and I spent most of the time vomiting and an on and off fever that was putting me out. Now I’m completely fine … It’s such a lonely disease. Even with my father and bestfriend with me I felt alone. I can’t describe how bad it feels and it scares them and I want to just hide. I am not giving up on getting my benefits and I hope anyone else that’s being denied gets what they deserve.


Maybe I am wrong but, imo, I feel like the authorities deny people their rights to things like SSI/SSD because of the greed for money. They are selfish and do not want to give out "free" money to people even though they are truly less fortunate. Its really sad, but I think that's how it really is. :-(