I was diagnosed at 16. I'm about to turn 40. I have not had a "work up" in YEARS. I opt to not take medications for lupus management. I do not have insurance. I am an educated, professional (ha ha) single mom of two teenage girls and my body is falling apart. I have been diagnosed SLE. I have Raynaud's, Sjogren's, arthritis and Fibromyalgia.
In the past, I have taken plaquenuil. Things have been manageable. About once a year something will go awry and I get through it- antibiotics or whatever. Right now, I'm not sure what I'm going to do.

My ex-husband lost his job so to pick up the financial slack, I have taken an additional job. I work 5:30am to 10:30 am in a bagel shop and then 11-7 at my other job in radio. The first one is physically demanding (on my feet, reaching stretching and moving the entire time) the second job is high stress (I'm mostly stationary but have a lot of responsibility). My feet do not swell often or much but they almost feel as tho they have stress fractures and when I lay down, they tingle, itch and burn all night- sometimes up as high as my knees. My knees are swollen behind them. I'm often short of breath. My back, musicles and joints ache all of the time. My hands swell and tingle and now, recently- my face on the left side has become tingly and numb, intermittently. My face looks bloated to me. The glands and lymph nodes in my neck are always swollen and are started to misshape my neck... one weekend, I did have to go to ER for a dose of steroids - my throat and neck swelled, I was swallowing my uvula and could not breathe well. My eyes are dry more and more and my vision gets "gloopy". I am exhausted! By the time the weekend rolls around, I just want to relax with my kids and my friends, Housework and chores are non-existent. I haven't the energy at all on the evenings or weekends.
I do not have health insurance for myself and money is extremely tight. The clinic I used to attend is no longer accepting patients. I'm concerned. As far as my schedule is concerned, There will be no easing up any time soon but the things I'm feeling physically are starting to freak me out a bit. I don't discuss this with my family or my friends- other than telling them that I'm tired and sore- and in dire need of a foot massage.
I'm not sure what I'm asking for here. I'm new to this forum and I'm putting it all out there.
Thanx for taking the time to read this.