Hi! Tammy and Honey,
I am almost 54, a R.N. and only working part time, and solely because of lupus. I worked as an ICU nurse for 21 years and then in a nursing home, and taught, too. I had to quit at least one of my jobs or die. I could no longer run in 4 directions at once, was falling alot, and publicly, and was especially grateful to be diagnosed with lupus rather that thought to have an alcohol or drug problem. You can imagine. I am blessed in that I was offered a .5 FTE teaching position that suits me perfectly. I am on 5mg of prednisone that keeps me functional. I couldn't work without it. My doc. is also a blessing, and always asks about my work hours. In addition to having a great lupus specialist, my husband is awesome. He is my greatest blessing. Before I started my lupus meds, I was so sick, all the time, that I came to the realization that I couldn't go on much longer like this. Unlike many of us, I had abnormal labs to give clues. After 6 pregnancy losses and hi antiphospholipid antibodies, Iga, Igg and Igm positives, hi antithyroid antibodies and a positive ana, my OB and NP put it together and said.....you might have lupus. I am in bed before 6pm and get out at 6am. And couldn't sleep without Ambien. I will never, ever, get used to the overwhelming malaise and exhaustion that I live with, and the brain fog was the most scary. I felt like I was losing my mind, and learned early on that I had to rest more or the forgetfulness, confusion and chronic panicky anxiety become unlivable with. I learned that if I spend the energy to do THIS, I can't do this. The Spoon Theory became a tool to help me teach what lupus does. My daughters were teenaged and less than kind when I was diagnosed. <butyoudon'tlooksick.com> helped say it all. Good luck with your data collection, research about lupus is key to a cure.
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.