My Story

Hello! Well this is my first blog on the Beaker Blog. I thought I would start with my history with Lupus and the road leading up to diagnosis.
Over the 4th of July weekend, 2006 my husband, my 2 kids and I were up at a friends cabin for the weekend, obviously we were enjoying the weather and great company. On Saturday afternoon I was out on a pontoon (of course, in the sun), when my friends notice a red rash around my mouth, which wasn't there earlier in the day. As the day progressed, the rash got more and more severe. Once we arrived at home that Sunday afternoon, the rash had spread to my chest and back. Over the course of 2 weeks, my symptoms started to pile up, which included a butterfly rash on the face, low grade fevers, swelling so severe I couldn't get out of bed without assistance, labored breathing, mouth sores, extreme fatigue, back pain, etc.

After my primary doctor ran a number of tests, I was sent to a Rheumotologist for further evaluation. The doctor suspected Systemic Lupus (SLE) almost immediately, as I was showing a large number of signs of this disease. For those of you who are unaware, there are typically 11 signs and symptoms that doctors look for when testing for Lupus. Below is a list:

• Butterfly rash: a reddish eruption across the nose and cheekbones
• Discoid lesions: reddish, raised, disk-shaped patches on the body
• Photosensitivity of the skin: a red rash that results from sun exposure
• Oral ulcers: sores in the mouth or nose that are usually painless but can be blister-like
• Arthritis: inflammation characterized by tenderness and swelling in two or more peripheral joints
• Chest/heart problems: breathing difficulty or chest pain, caused by inflammation of the lining of the chest cavity or heart, respectively
• Neurological disorders: sudden onset of seizures or psychosis
• Kidney disorders: kidney failure
• Blood cell disturbances: hemolytic anemia (a deficiency in red blood cells, resulting from their abnormal destruction) or leukopenia (an excessively low white blood cell count)
• Immunologic disruption: a dysfunctional immune system's attack on healthy cell tissue
• Antinuclear antibodies (ANA): antibodies that battle cell nuclei

After weeks of testing, skin biopsies, etc. on September 4, 2006 I was officially diagnosed with SLE. I was diagnosed quickly; some people agonize with pain and suffering for years before getting a diagnosis. Although it is something no one wants to hear, I have to admit I was happy that there was finally a diagnosis, which now meant that we could begin treatment and move on with our lives, right? Yeah.. right... I wish it was that easy!

At this point in early September, I was on an aggressive amount of Prednisone in an effort to calm my flare-ups. My Sed Rate was 84. The Sed Rate is a blood test that reveals inflammatory activity - a normal result should be <20. As you may know, there is no known cause and no known cure for Lupus. The steroids were helpful, but not without consequences. Prednisone is a nasty steroid that can make your face puffy, lead to kidney failure, water retention, etc. The high dose I was on caused by skin to thin resulting in many skin lesions and my belly-button ring falling out. I have to tell you - that was one of the nastiest things I have ever experienced!

As a result of extensive Prednisone consumption, in January 2007 I lost most of my hair. This is actually a fairly common side effect and most of the time the hair grows back. For me, the hair did grow back, but my natural curl is no longer there! Oh well! You can't have everything, right?

Fast forward to August, 2007 when my flare-ups moved into my single kidney. (I was born with 1 kidney, I did not lose one to Lupus) The doctor was afraid that my kidney might be in Stage IV failure. After a biopsy and many sleepless nights, the news came back that I was in Stage II! Yes, that's good! At least it's better than a Stage IV. For those of you unfamiliar with the stages of Lupus Nephritis, Stage I and II generally have a good prognosis. Stage III, IV and V require more aggressive forms of therapy. As of today, I stand at Stage III of Lupus Nephritis.

Over the course of the last few years, my flare-ups seem to be random, though NOT triggered by sunlight. I have noticed that stress and fatigue play a huge factor in my flare-ups. I have had symptoms as mentioned above, in addition to Pluerisy (an inflammation of the lining of the lungs), Raynauds (fingers and toes that turn white or blue when exposed to cold or during stressful periods), blurred vision, etc.

This past week was a week full of flare-ups resulting in a lot of rest. I woke up on Saturday with a mouth full of sores, feet and hands so sore I needed help getting out of bed, etc. Fortunately, my kidney was not effected and there were no major signs of pluerisy.

I hope this blog will help others out there that are either suffering from this disease or looking to do research. I also think that this blog may be somewhat therepeutic.

I hope to hear from you!