I have sle lupus

[Vanessaperez102214]

I don’t understand how the Drs call it mild lupus my bones and back of my legs hurt so bad I get real bad memory loss confusion chest pain the Drs Don’t find nothing besides my ana positive they came up with a number of 140 I can’t even walk up the stair I applied for ssi/disability since December haven’t heard nothing back they said that it’s a long process idk what to do I have mortgage and bills that’s due just applied for a job at Verizon doing customer service idk how I am going to do it I’m to sick to work but don’t have a choice single mom with a 3year old I purchased a home in April and got diagnosed July I moved far from my family in a whole different state didn’t know I was ill thought I was just tired I’m on plaquenil twice a day vitamin d and b12 for pain I was given gabapentin which don’t help or ipibrofin which don’t work so I don’t take nothing

[LupusKaren]

Vanessa, I am assuming you are in the USA? Not that it matters. I am so sorry you have been diagnosed with SLE, doctors are very fond of labels such as mild Lupus, in my world there is no such thing, SLE diagnosis is bad enough, and affects each and everyone one of us differently. Have you got a primary GP you see? If so, can you schedule an appt to explain that you are not doing well, and the pressures you are under to work and pay bills? I would also chase the disability department.

Have you told your family of your diagnosis? If not, could you? Would anyone be prepared to come and help you for a couple of weeks to take the pressure off?

[Vanessaperez102214 in reply to LupusKaren]

Hello yes they know they don’t take it real serious because they don’t think it’s a serious condition pretty ignorant they have there own bills and problems all they will say is figure it out but I’m going to call today to talk to them they have til Friday to decide they always give a date then say o we forgot this or this so we haven’t decide it’s like I wanna work so I can take my mind of it but I literally think I will fall asleep at work since I’m so fatigue yes I’m I. California

[Paul_Howard Partner LUPUS UK]

Hi Vanessaperez102214 ,

Have you been in touch with the California Chapter of the Lupus Foundation of America? They may be able to offer some advice and support, including recommendations of doctors in your area who may be more understanding and have experiencing in treating people with lupus. - lupus.org/california