Lupus is a chronic, autoimmune disease. It can damage any part of the body (skin, joints, and/or organs inside the body). Many people across the globe have had Lupus for years without even knowing it. According to The Lupus Foundation of America, somewhere around 16,000 people are diagnosed with lupus across the country each year. I have had lupus for 15 years or more, but not diagnosed till 2012. I always got sick in the fall, a long episode of colds that took forever to get over (immune deficient). I am a registered nurse and had to leave 3 different great jobs due to relentless fatigue. I am 59 now and feel like I lost 15 years of my life, but now I have a diagnosis. I finally ended up with confusion, muscle weakness, pain all over, mouth lesions, and a huge abscess on my arm. I had lupus lesions in my brain and on my skin.
I ended up in the burn unit for months, on steroids and chemotherapy, 4 months in the hospital, 1 month at a physiotherapy rehab hospital. I have been home almost 2 years, on CellCept and Plaquenil. Still have fatigue, joint and muscle pain. I want to get back to my former pace and endurance, but I remind myself I am alive. I have a great rheumatologist, my doctors saved my life. I was perfectly functional in December 2011, then by January, a walking zombie, incoherent and in pain and not able to eat or drink. Every lupus patient needs people around them who know who they really are, to pick up on the physical and mental changes that show up.
It took 2 weeks before the lupus diagnosis, and I kept deteriorating. Finally once we had the diagnosis, I had to have platelet apheresis before being sent to the burn unit, to care for the skin lesions. This is a tough disease to recognize and diagnose. I had been told I had fibromyalgia, chronic pain, restless leg syndrome, depression and anxiety. IF you have these symptoms, try rheumatology and test for lupus. Don’t be put off if you think something more is wrong. I am finally on a treatment plan. I still have days of fatigue, it takes longer to get over colds etc., but so much better than before. I am not crazy or lazy, just a little pooped now and then.