I have known the word Lupus every since I can remember. My grandmother had it. It was never really talked about or anything. One day, at age 56, she just died of pneumonia and that was it. A few years later my aunt came down with the disease. I was a teenager by then but it really wasn't discussed then either. I was very close to this aunt, (almost like a mother to me), but she never really spoke to me about it. I do remember she was always sick in bed with something or in the hospital with pneumonia. Then, one day almost 2 years ago, I got a call from my sister, (my family lives up north), telling me that my aunt had literally dropped dead of a massive heart attack at age 54! We were all devestated. Her doc said it was the Lupus. Her arteries were like tissue paper. He suggested we all get tested. Of course, I didn't at that time. I had been having strange things going on in my body for a couple of years before that. Breaking out in rashes in the sun, my fingers and toes turning white and numb when cold, fatigue, etc. About six months after my aunt's death I decided to get tested. I told my internist my whole story and he said he would run an ANA but not to worry, it would be negative. Well it wasn't. He called me back in and did an anti-DNA which was negative. He told me I did not have Lupus. I asked him about all of my symptoms, (I had just came back from the beach and felt terrible!), and he asked me if I had been crying a lot lately! I told him NO but I would if I didn't feel better soon. I have since learned that many Lupus patients have negative anti-DNA titers. Unfortunately I got worse and developed a very severe case of pneumonia. I found a wonderful pulmonary specialist who saved my life. He asked me what my doc was doing about my positive ANA and I told him nothing and that I would not go back to him. He told me we would get to the bottom of it, and boy did he! Lots and lots of lab tests, x-rays, CT's. My pneumonia was so bad that I lost the bottom portion of my right lung since my first doc did not even do a chest x-ray!!. I had an enlarged heart and was in congestive heart failure. Oh yeah, by the way I was also diagnosed with Lupus, fibromyalgia and Raynaud's. What a mess last summer was! I was lucky to find a wonderful rheumatologist though. I have read many stories of people GOING YEARS before being diagnosed correctly. You would think in this day and age it would be much easier... it should be! I'm now in my third flare this year. I'm on prednisone, (yuck), and Plaquenil. I refuse to just sit and let this take me down. Sure I was depressed at first but then I realized I had to get off my fat butt and do something. I have 5 children, 25 and 23 year old sons, 21, 10, and 4 year old daughters. I also have 2 granddaughters ages 3 and 2, and I'm only 41!! I realize this Lupus thing can bring you down but I have been blessed with so much, I can't let it get to me. I have the most wonderful, patient and kindest husband in the world. I don't know what I would do without him. So that's my story. Be well.
I had been having strange things going on in my body for a couple of years before that. Breaking out in rashes in the sun, my fingers and toes turning white and numb when cold, fatigue, etc. About six months after my aunt's death I decided to get tested. I told my internist my whole story and he said he would run an ANA but not to worry, it would be negative. Well it wasn't. He called me back in and did an anti-DNA which was negative. He told me I did not have Lupus. I asked him about all of my symptoms, (I had just came back from the beach and felt terrible!), and he asked me if I had been crying a lot lately! I told him NO but I would if I didn't feel better soon. I have since learned that many Lupus patients have negative anti-DNA titers. Unfortunately I got worse and developed a very severe case of pneumonia. I found a wonderful pulmonary specialist who saved my life. He asked me what my doc was doing about my positive ANA and I told him nothing and that I would not go back to him. He told me we would get to the bottom of it, and boy did he! Lots and lots of lab tests, x-rays, CT's. My pneumonia was so bad that I lost the bottom portion of my right lung since my first doc did not even do a chest x-ray!!. I had an enlarged heart and was in congestive heart failure. Oh yeah, by the way I was also diagnosed with Lupus, fibromyalgia and Raynaud's. What a mess last summer was! I was lucky to find a wonderful rheumatologist though.
I have read many stories of people GOING YEARS before being diagnosed correctly. You would think in this day and age it would be much easier... it should be!
I'm now in my third flare this year. I'm on prednisone, (yuck), and Plaquenil. I refuse to just sit and let this take me down. Sure I was depressed at first but then I realized I had to get off my fat butt and do something. I have 5 children, 25 and 23 year old sons, 21, 10, and 4 year old daughters. I also have 2 granddaughters ages 3 and 2, and I'm only 41!! I realize this Lupus thing can bring you down but I have been blessed with so much, I can't let it get to me. I have the most wonderful, patient and kindest husband in the world. I don't know what I would do without him. So that's my story. Be well.
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