I would like to add to everyone's good advice. I have learned the hard way: the decisions we make today living with lupus will directly and severely impact our level of wellness and function 10 and 20 years down our road. I am now, finally, looking into retirement and/or disability. With the birth of our first grandchild, and an unremitting workload at work, where fewer and fewer staff carry the ever growing workload.... I am finally looking at really how important is the job I truly love?, in comparison to living older and sicker if I con't to work the way I have been, and will I look back with regrets, at whatever wellness I could have better protected, to have more of, in the future, for the more important things, like being with my husband and children, I hate the way lupus has made me choose, forced me to decide between working, and money for neccesities, or an occasional family vacation, my job or being around for my family, and my fear of being too sick to care for myself, or walk to the bathroom, or stand in the shower. Because, this past year... bathing and walking, on some days, have been almost impossible to do. I am a nurse/teacher, and over the past 5 years, I have cut my workload considerably, refused several full time jobs, agreed to work only a half time posiition, and resigned my perdiem position in a nursing home, and kept forcing myself to work because I wanted to. I take whammy doses of two blood pressure meds, and daily prednisone, the lowest dose I can live on and still function. My blood pressure is barely managed and I am finally looking at the what ifs, what if I have a stroke tonight, is my job worth the risk? What if my kidney function worsens tomorrow, will I regret I didn't stop working sooner? Yes, and once I figured that out, today, I see hope I will be less sick in the future, and able to spend time with my grandchild playing instead of watching her from the couch, and able to greet my husband with dinner cooked at the end of his terribly tough workday, instead of in bed in too much pain to even ask him how his day went. I am tired especially of living chronically ill with this disease, and am glad I you friends here to talk to, and share with.
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.