Glad to find a place where I'm not alone
I am a 30 year old single mother of 2 (ages 2 and 8). I have had SLE for the past 7 years. Iím currently taking Cellcept 500mg twice daily, Plaquenil 200mg twice daily, Prednisone 30 mg/day, Phenergan 25mg 3 x day as needed for nausea, Vicodin 5/500 2 x day as needed for pain, Vitamins, Excedrin Migraine for Headache. I have a daughter with special needs and I donít have much time to participate in a support group. I would love to, however there isnít much time. My chief complaints with this disease currently are extreme fatigue, inability to sleep, pain in lower back and at the base of my hairline at the back of my neck, and a pressure feeling that I have from my upper stomach to my knee caps, and thereís always the neurological part where I feel like Iím already 98 because I canít remember anything or I get disoriented. Half of the time Iím unsure of whether I suffer from more disease activity or side effects of medicine and which is worse at this point. I been hospitalized only once from complications of Lupus this past March. I was in the hospital for one week with temperatures of 104 & 105. I don't remember much, but when I was awake, all I thought about was my children and making it so they wouldn't be alone. I've spent the last 6 years in denial trying to convince myself that I'm no different. I'm tired of running from myself and glad God spared my life earlier this year. I recognize myself and my disease for what they are and now I am just looking for answers, ideas, and help to ease the challenges of surviving with SLE while being a single mother, helping my child with special needs to succeed in life, having a full time job, and experiencing small fleeting moments of happiness.
Pray to be a decent human being. No one gets everything they want. Nothing is promised. Enjoy what you do. Expectations cause you suffuring. Appreciate what you have at that moment.