What is Lupus? Lupus is a chronic, autoimmune disease that is hard to diagnose, difficult to manage and if not treated, can become life threatening.Lupus is not contagious. It disrupts the immune system’s ability to protect the body against viruses, bacteria and foreign substances. Lupus’ short circuiting of the immune system’s identification process causes it to create antibodies against its own cells and tissues. There is no cure for lupus; it affects both sexes and can strike at any age. Lupus affects adult women 10 times more frequently than men and is more prevalent than sickle cell anemia, cerebral palsy and cystic fibrosis, yet it is the least known of all major illnesses.
While chatting with a sweet friend of mine the other day, she asked if I would share my story. She is going thru testing right now, and is floating out somewhere in undiagnoised land (please say a prayer for her). I decided since October is Lupus Awareness Month, I would take the time to do so know. Also, please know that I use the term undiagnosised land with a smile -it is hard, I have been there, and for me, getting a diagnosis was such a relief to me -so, I know what my dear friend is going thru right now, and I probably know pretty close to how she is feeling, having been there myself.
My Lupus probably actually started showing it's signs way long before we knew it was even a possiblity. In 1997, I spent some time in the hospital with Deep Vein Thrombosis. At that time it was blamed on my BC pills, so I was taken off them. A year later I was right back, same problem, different leg. All the docs could say at this point was 'Hmmm, that's weird'. A few months later, the DVT problems started back up again, but having been thru it twice before, I was able to recognize it and do something about it before it got hospital serious. Summer of 1999, I spent a Saturday out in the sun. I was tired that afternoon and took a nap -slept most of the afternoon and evening, woke up with an extremely high fever, went back to bed and slept the next day. I spent time in my GP's office over the next dew days, being tested from everything from HIV to Tick Fever to Menegitis. I was sent to the hopsital for a biopsy on my lymphnodes, to rule out Lymphoma, I was sent back to the hospital for a spinal tap to teat for Lukemia. After this test, I was turned over to an oncologist (a cancer doctor). Still unsure what was going on, the oncologist got me on some meds to finally make me feel better. At one point, he was going over some tests results with me and said something to the effect of 'is it because of your Lupus, that is possible, but that is not what we are worried about at this point'. This was the first time I had heard the term Lupus with all of my sickness. My mom was with me - she was with me every step of this long and stressful journey. She questioned the term Lupus and since the oncologist realized that I didn't actually know for sure I had Lupus, he sent me on to yet another doctor - an rhuemetologist this time. I spent quite a bit of time with him on my first visit (mom was there) recapping everything I had been thru over the past 10 months, all of the different variety of doctors I had seen and all of the test I had undergone. This visit, he told me he really didn't feel like we were loooking at Lupus, but he wanted to run some more tests just for confirmation. My follow up appt with him (mom DID NOT go) he was shocked, but confirmed my diagnosis of Lupus and got me started on my meds right away. This was almost a year to the date from the time I got sick with the fever. This mystery fever last for about 5 months - it was very high, nothing would break it. I would go to work, and go home and go to bed. I slept 12-14 hours a night, I was not eating, due to what happened when I did (no need to explain here - but now my teeth are pretty much shot because of it) I seriously survived that summer on icee's from the little dairy bar down the road. Some of my other symptoms included hair loss - thankfully it wasn't patchy, but it was bad - my hair thinned out to about half what it originally was; very low iron levels - I have had 3 complete iron infusions (they were in 2000-2001) tiredness, and my favorite of all the rheumetoid arthritis. I know it sounds crazy, but there are days I can tell you when we are going to have a bad storm,I can tell where the little front line is on the weather chart and I can tell you within a few points, what the pressure is outside.
I have shared all of this, not for sympathy, but to get the word about Lupus out. At this time, there is no cure for Lupus. You can only treat the symptoms. For most people, myself included, sometimes treating the symptoms is just as big of a risk as the actual symptoms themselves. You can ask anyone who has been on high dose prednisone for an extended amount of time. I still fight sometimes daily with this, but for the most part have learned how to either handle it or just live with it. Sadly, my hubby and my children have learned that sometimes we just have to live with it.
*Most of this story came from my memory, but I did keep a journal of sorts during this time, due to the fact that I was being sent to so many different specialists and wanted to keep it all straight.