Annie

My name is Annie and I have lupus. I am 55 years old and am grateful for every day! In 1976 my sister was diagnosed with lupus, although initially the only diagnosis was Idiopathic Thrombocytopenia (ITP) and her spleen was removed. She has struggled with Lupus since and has Osteoporosis, major arthritis, chronic fatigue, nausea, vomiting, malar rash and all the other nasties lupus throws at us. She is also the bravest, toughest woman I know!

When I suspected I probably had lupus I put off my diagnosis as I didn’t feel ready for the rounds of chemotherapy, steroids and other drugs she was on.

All my life I have struggled with fatigue, and Christmas Eve 1997 I had a sore throat and was so tired I couldn’t move. I had what was diagnosed as Ross River Fever. I now believe the RRF brought on a major lupus flare. My hands ached constantly, my feet felt as if I was walking on gravel, my skin constantly burnt like hot sand was blowing on it, and I blew up like a balloon in the face, hands and feet. I was beyond tired. I now believe I also had lupus nephritis. My oldest son turned 21 at the end of 1998 and I was so bloated by then my face was unrecognisable. The Doctors told me it was the RRF so I suffered, and suffered for 18 months. And worked…..and slept a lot!!

Following an eruption of a hive like rash that did not go away with the use of antihistamines my Doctor ran a series of tests. My ANA was sky high and my Rheumatoid Factor 70 plus. I was at work when I got the call from the doctor…. .”we need to talk…I think you have Lupus”.. I burst into tears as I KNEW what that call meant.

So far I have avoided major drug therapy, but the time is coming when I need to seriously consider the options – especially for my kidneys. I had a major heart attack in 2006, and now have 3 stents in my coronary arteries. My cholesterol was only 4 at the time, while not low, it was certainly not considered high either. I also have lupus lesions in my brain, causing some odd neurological symptoms, including at one stage, temporary loss of vision, temporary loss of all feeling in my legs, and loss of feeling in my hands. I was tested for MS, but was cleared. I am not sure if this is a good thing. People know and understand MS. No one knows about Lupus.

So – how do I face Lupus? I DO NOT consider myself sick, I try to keep a sense of humour, to be strong for others, and not let it get me down. No one knows what the future holds – anything could happen. In the meantime, I am passionate about raising awareness of this disease. With awareness will come research, and with research, will come a cure

“IN THE LUPIE LOOP AND LOVING IT!!!”