Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
https://www.usinlupus.com/resources/resourceorganizations/
On the other hand, if your wife has assets, you could see a divorce lawyer for a consultation and see what can be done so that your needs would be met.
Welcome to the group. Sorry to read about your struggles. Stress is one of the worst things for lupus, as you probably already know. I've had lupus for 20 years, been deemed disabled , unable to work since 2008 so I unstand part of your struggle. However, as much as lupus is very much an unknown disease and people are uneducated, I truly believe it is even harder for men. I say that because my son who is now 26, was diagnosed when he was 19 and what support and education that is out there is mainly geared toward mid-age woman.
Anyhow, when I filed for disability I used a company that specializes in that specifically, there name is Allsup. Did you happen to use a company or a lawyer when you filed? I'm thinking that your rheumatologist, neurologist and any other specialist you see might be willing to act as advocates for you and the paper work from your disability could be used to help educate the judge on lupus, also if you have any secondary diseases due to lupus I would be sure and add them on. Don't forget to add that just because you look okay on the outside that your immune system is fighting a battle every minute. Sorry for the long post, these are things I get very passionate about.
Best of luck to you;
Melissa
You need an attorney FAST if you don't have one already, and don't forget to call all your medical providers and have your wife's name taken off any HIPPA lists where they can share information with her - this includes pharmacies.