Just got a call from my private disability company. I have been on private disability with them 25 years! My rheumy or probably his teaching fellow put down on my record my lupus is “stable” and I have some ability to work! The company interprets stable as I am ok. I’ve called and left a message with the dr office but this is potentially the last straw and I’ll be homeless. I don’t qualify for ssi as I haven’t worked in 25 yrs now. I would have no income and no gov assistance. I literally have gotten way worse and have chronic kidney disease from the lupus and have been checking into assisted living houses due to brain cognition, memory problems. I am floored they would make this mistake at drs office. Anyone have a similar story or ideas how to resolve this? Stable blood tests don’t mean I feel well or can function!
Thanks! I’ll check. Sounds like it! What I don’t understand how my dr says lupus is stable. You could do some work. My mental status changed tremendously and. Have a neuro referral. By saying that, he opens the door for them to overturn their 25 yr decision.
I think you just need to talk to your Dr. and explain what us going to happen and why. With all your illness there is NOWAY he would expect you to work. You would not be reliable at all, you probably wouldn’t make a full week. If he does…get a lawyer, and call the doctors who would defend you. Good luck
There is no such thing as"normal" lupus. Contact an atty or legal aid. Good luck
You can get a part time job. Go to social services apply for eviction assistance you have to fight despite illness
I'm so sorry about this. Discuss STRONGLY with your Dr. that you need that form changed. Even if you can't get SSI. you can apply for SSDI, that's for people who don't have enough quarters of work to qualify for SSI. I have a friend who got cut off due to the same error from her Dr. She was able to get welfare until her SSDI is approved. GET A DISABILITY LAWYER SO THAT GOES FASTER and you won't have to try again and again. I was going to be homeless when I was denied for SSDI. The lawyer said it could take 2 years to appeal. I should have used a lawyer the first time! They just take a percentage of your first paycheck, which is a big one due to the back pay the gov't will owe you for all the months they didn't pay you.
Best wishes~! I've been there, scary stuff. Hopefully you won't lose your disability if they change that form or refile a different report ASAP!
that made me laugh. yes I guess thats what they are saying. normal lupus
Linda Bull said:
There is no such thing as"normal" lupus. Contact an atty or legal aid. Good luck
Good point. I know they were in contact. They only need his narrative note now and will decide whatever. I left a strong message with the office about this and so far no call back. I need to get to them first. I may just go there tomorrow in the am and talk with them directly
John "JC" Colyer said:
The Company might of contacted Dr and put pressure on
Lupie said:Thanks! I'll check. Sounds like it! What I don't understand how my dr says lupus is stable. You could do some work. My mental status changed tremendously and. Have a neuro referral. By saying that, he opens the door for them to overturn their 25 yr decision.
k. Never heard of eviction assistance. I will look into that. I hope if I am proactive and stop the doctor from making this worse, I can avoid the inevitable eviction and everything else with it.
Unshoreandscared said:
You can get a part time job. Go to social services apply for eviction assistance you have to fight despite illness
You are right. I wouldn't make a week. And if I did, I wouldn't make the next one. This insurance company has paid 100s of millions of dollars in penalties from the government for wrongful termination of benefits, one to a quadriplegic after 8 years. smh. they don't need any ammunition from the darn doctor. they are already unethical enough.
Deb said:
I think you just need to talk to your Dr. and explain what us going to happen and why. With all your illness there is NOWAY he would expect you to work. You would not be reliable at all, you probably wouldn't make a full week. If he does....get a lawyer, and call the doctors who would defend you. Good luck
That is a good point about the pressure on the doctor. You think they would be more responsible to their patients. The problem with my doctor is there are residents under them and they are clueless. to make it worse the new ones start this month. I imagine the residents wrote the report in his notes. He hardly even speaks english. Plus he doesn't know the system and how to word things so they aren't misinterpreted
John "JC" Colyer said:
The Company might of contacted Dr and put pressure on
Lupie said:Thanks! I'll check. Sounds like it! What I don't understand how my dr says lupus is stable. You could do some work. My mental status changed tremendously and. Have a neuro referral. By saying that, he opens the door for them to overturn their 25 yr decision.
So TELL him what to write, and that when he says "stable", they think it means you are cured. He needs to say your lupus is ACTIVE and unstable.
ok. so I think that all the information is good. I am going to make a trip there tomorrow without an appointment and talk to whomever is in charge of all of this disability stuff. I have an appointment the end of july so they need to include that in their notes and not send anything at all until then. And, as suggested, i need to tell them to state it as active. good point! the past three years have been by far my worst and every year it gets worse and worse. Hopefully, the head doc is willing to listen. He seems he would. The new docs without experience I would assume are the problem. I guess prayers for tomorrow will help!
Sheila W. said:
So TELL him what to write, and that when he says "stable", they think it means you are cured. He needs to say your lupus is ACTIVE and unstable.
Thank you so much! Tons of information in there to check on!
dkel9307 said:
Hi Lupie
The doctors and insurance company seem to be wrong here.
In addition to the advice of others, one of our friends on another site sent this link, which I understand provides some support services available to people. I am not sure if it is State-specific, but I think is worth a look. If it is State-specific, maybe there are other similar options where you live?
http://www.livingwithfibro.org/forum/topics/help-for-low-income-ame...
Kind regards
Dkel
Thanks to everyone who responded and read my posts. It is incredible to have such support on here. Knowledge is power and the ability to sound off ideas on everyone is amazing. Thanks for always being around and the wonderful help!
Will pray!!
Lupie said:
The new docs without experience I would assume are the problem. I guess prayers for tomorrow will help!
Dkel, thanks for sharing the article I wrote about helps for Americans who qualify!
Thank you!!
Sheila W. said:
Will pray!!
Lupie said:The new docs without experience I would assume are the problem. I guess prayers for tomorrow will help!
Lord I dont have a resolution I am offering my prayer and support I hope you really come through. I just got laid off in January and have been putting in applications after applications online you either over qualified or not qualified enough.I was laid off of 12 years and now I await my unemployment which is far less then I am making and I take care of my ederly mother too,So we have to I am going to apply for ebt and whatever I have been working for over 30 years.I feel I have put my time in and I still am trying to work,
I would ask the doc if they'll write a letter in your file that says "blood test stable, but symptoms continue." That would be one step. This is horrible and I'm sorry your dealing with this. The only suggestion I have past this would be help from family. I hope things are looking better for you?