Ronda B. - Diagnosed at age 41
I was finally diagnosed in 1994. It was a difficult journey, seeing so many doctors in many fields. They all seemed to say we know something is not right but we are not sure. At 11 years of age, I would come home from school and say “is it ok if I lay down? I'm so tired,” and I would sleep for hours. This seemed to get worse as time went on. I had no stamina.
After I was married, I had one miscarriage after another, eight in total. I seemed to get worse when I was in the sun, I would get weak and so tired. As the years passed, my symptoms became "strange" as the doctors labeled them. Unusual rashes on my skin. Several times a year; pleurisy, pneumonia, seizures, burning sensation in the spine, strokes, leg malfunction(both), extreme pain in large joints, headaches, fevers. I live with a low-grade fever and pain 24 hours a day. My nervous system has been attacked and that has caused a lot of problems in my life in general. My thyroid was destroyed by the lupus in 1987. I have tried all medications available for the lupus and seizures but develop allergies to them very quickly. I was on Plaquenil for 23 years, seeing an eye specialist regularly and then developed an allergy to it, my left eye was damaged, no more Plaquenil. The allergies have made management very difficult. Not so easy when you cannot breathe and you are covered in hives. Off you go in an ambulance.
How has this affected my life? It's all in how you look at things, I think. I try very hard to focus on what I can do, and do my best at that. And when I can do things, I truly enjoy it. When I cannot, I rest, then try again.
How I managed for all these years? I have learned to know my body, my symptoms, taken responsibility for my health care, worked with my health team, and have learned to have good communication skills. Without these tools the doctors cannot help me or others, a diagnosis is only as good as the information given. We have hope that someday a cure will be found for "the disease of a thousand faces".