Day by day. Systemic lupus erythematosus is a mouthful but what does it mean? Too much A-N-A, anti DS D-N-A, etcetera, inflammation, pain and organ dysfunction, how do we manage it all. Lab tests, lab rat, take a piece of us here and there. Photographs outside, MRIs and CTs inside is there any end? Hard to access specialist care. GPs uninformed. Peer support groups bridge the gap helping us learn, helping us cope, and needed every day. Faith can help to hold on in flares. Reaching out to others is critical to mental health. Body wide, many symptoms, challenging each of us differently, the disease of a thousand faces. Treatment is individual. Medications, physical therapy, counselling, nutrition, sleep, body modalities, meditation, and so much more. Invisible disability on top of what is seen. Lupus is different for everyone and for the families and friends. Educate, advocate, hang on to who you are. The journey is complicated, variable and a true test of who you are. Lupus is not our friend, but rather a reality we must address. Be your own best advocate. Lupus does not have us, We own it! Moment to moment, day by day. Day by day. Hang on to who you are. Day by day.
