Sue's Story

To whom this may concern, well I have to say I have never really felt normal. As a small child I was always tired and just didn't feel right. I did have a bad case of mononucleosis at age 11 and often wonder if this wasn't the cause of this disease, from there the migraines began. I wasn't actually diagnosed with Lupus until age 42 so I spent many years wondering what could be wrong with me. The fatigue I've always felt was and is so overwhelming that I found it so hard to keep up with my kid's and be the kind of mother I wanted to be but I did the best I could and I managed okay until I hit my late thirties and early forties. I have seen many specialists and it took what seemed forever to find someone who could diagnose my problem. I have had many tests from x-rays and scans, an mri, a spinal tap and every other test you can think of, some painful and some just plain embarrassing. Once my joints started to swell my blood work finally started to show what the problem was. Since then I have suffered with continuing migraines, facial pain, swollen painful joints, dental problems, irritable bowel syndrome, hair loss, chronic sinus problems, muscle pain and weakness, neurological symptoms, bladder problems, back spasms, a blood disorder, miscarriage, and skin problems. I have tried to work but have so many problems that hold me back. My husband has a severe case of rheumatoid arthritis as well but luckily he has found medication to keep it under control and he is able to work. This disease has robbed me of a normal life, the ability to help pay the bills and it's been impossible to buy our own home. To keep the house clean, the laundry done and meals on the table takes everything I have. One of the big problems is people can't see the illness and they think you look fine so you must feel fine, well except for the red cheeks when I am in a bad flare. I have had shoulder surgery, gallbadder surgery, hand surgery, nasal surgery, and have spent a fortune on my teeth only to lose them because most procedures don't work due to the illness. I am on many expensive medications that cause stomach and heart problems and God only knows what else but I have no choice if I choose to be able to walk and be as normal as I can. Luckily my kidneys haven't been affected. This is my story in short form as I am suffering with severe facial pain at this time and find it almost impossible to even concentrate.
Thanks for your time, Sue Sommerfeld.