Hi and welcome! I was diagnosed with SLE, Sjogren's, and Reynaud's starting in 2006, but I believe I had them for about 8 years before that. I'm really sorry you are going through all of this, it's certainly not fun, but I'm glad you have such a wonderful boss - they are hard to find!
I'm a teacher, and it's a good career for me most of the time. What helps a lot as far as my health is that I have the summers off to regain my health again, along with breaks during the year which help a lot. (spring break, Christmas break, etc.)
I'm very blessed to work for a principal who is amazing at making accomodations I need. I can't participate in committees or activities that meet in the evening, because the fatigue hits me by 5:30 during the fall/winter, and 6:00 or 6:30 in the spring. If it's something I am required to do, like Curriculum Night or parent conferences, I take off the morning to rest and work the afternoon and evening. I have very strong photosensitivity, so when we have all outdoor activities like Field Day, he makes sure someone is available to cover my class if we're in an area without shade. That said, teaching is hard emotionally and I'm drained by the end of the day. I'm often behind in grading papers because I just don't have the energy at the end of the day for anything.
I'm very aware that there will likely come a day that I can no longer teach; that I won't be able to manage a full time schedule anymore. I'm hoping to work from home somehow, preferably writing. I'm 42 now, and can retire when I'm 54. I hope and pray I stay healthy enough to retire!
What might help you is to pay attention to when you feel at your best and when you feel at your worst, then plan work accordingly. For example, I feel best in the morning, after I've had the night to rest and restore my body. So a teaching schedule works for me. I couldn't manage an afternoon/evening schedule on a regular basis. For you it may be very different. If you find that mornings are worse for you, look at a career that will allow you to work later in the day. I've learned that the biggest key to living semi-successfully with lupus is to listen to your body.
Lupus, you have no chance!
Love and hugs,
(mom to my little Chihuahua, Brandi)
Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.