my story... Let's see what I can remember... About 10 years ago, I noticed I was having a lot of pain, especially in my hips. I had always played a lot of tennis, so I told myself I am injured. I finally ended up in the rheumatologist office and he described a disease that he thought was lupus. I did not know what lupus was. According to the blood test, my immune system was perfect. I forgot all about this conversation until years later when I read his report.
I was spending a lot of time in the desert, the pigment of my skin started changing, and I had severe headaches. I was in the sun a lot and always felt like I had the flu. I just kept remembering my tests all came back negative. Later, I learned I did have thyroid antibodies. However, the lab missed the antibodies. A couple of my girlfriends had thyroid problems AND they had sore hips. I have never found a doctor that can answer why that happens. I had hashitoxicosis. I was both hypothyroid and hyperthyroid, but I thought finally that the physician had found the mystery illness.
At this point, I was getting bronchitis for six months at a time and was getting to the point I couldn’t walk across the street. My hair was falling out. My niece told me about chronic fatigue syndrome and I said that must be it. Another doctor then told me I had Fibromyalgia. I told my Endocrinologist I couldn’t remember anything and also about the pain and fatigue. He tested my blood sugar and said I was hypoglycemic. This is the solution. I could take a diabetic drug.
I WANT TO THANK EVERYONE THAT HAS OR WILL ATTEND OUR SUPPORT GROUP. IT IS SO REWARDING TO TALK TO PEOPLE THAT UNDERSTAND HOW DIFFICULT AND CHALLENGING THIS DISEASE IS... I AM THINKING WE ADOPT THE MOTTO, “LIVING WELL WITH LUPUS IS OUR GOAL”. Judy Terrean
I started working again. I sold new tract homes. I could not do the reports, do the paperwork, and I started to have panic attacks. At this time, I had several family members living with me. I thought I would die from the stress and I know I made their lives miserable. My body would not accept any physical or mental stress. I went to a neurological/psychiatrist and he figured out I did have memory problems. I think I went to his office on the wrong day. He had me take an MRI of the brain and they found white spots on the brain. I also had a CAT scan of the brain and the blood flow was not normal. I could not do my work. I had no idea how to handle anything. I had done the same type of job for 25 years. I felt crazy.
Some other doctor found more antibodies and a low complement level. He told me the results were serious, and he understood why I was in pain and was so tired. He told me to go back to a Rheumatologist, and I started to hear the words Sjogren’s Syndrome, Connective Tissue Disease, and recently, Lupus. Leaving out many details, the entire diagnostic process took about 10 years. I had a kidney test come back that didn’t look too good. My Rheumatologist thought there must be an error. The next test was O.K. Now, I just got another call about high cholesterol. What a strange disease this is. I am taking several medications. One of the drugs is for narcolepsy. Without it, I could sleep 20/7. Sometimes, I just collapse and sleep for a couple of days, but I feel lucky right now. I have a great team of physicians. So many people out there are suffering.
I want to thank the Lupus Foundation of Southern California for giving me the opportunity to be the Newport Beach Facilitator and the understanding I have received regarding my limitations. I hope I can do something worthwhile and help increase awareness of this disease. What can we do to raise more money for funding research? I think we just have to do it! - Judy Terrean
P.S. Since I wrote the above story. I have been diagnosed with Lupus Cerebritis. I am having IVIG infusions. The infusions are helping my cognitive abilities. Also, I have been treated for toxacara (parasites from dogs and cats). These parasites can cause blindness and if the parasites migrate to your brain they can cause death. In 2007 hoping for good health for everyone.