It was early 1978, and I was a young mother, with a baby just a few months old. She had begun vomiting profusely when she was two weeks old, and we had been through an arduous and stressful six months trying to get a diagnosis and, eventually, surgery to correct the congenital defect in her stomach. In the midst of all of this, I was having problems of my own. The muscles and ligaments necessary to carry my baby during pregnancy were too weak, and I had torn my ligaments, which caused severe uterine prolapse. As soon as she was strong enough following her surgery, I had major surgery to repair the damage that being pregnant had done to me, and was looking forward to finally having better days.
It took quite a while for me to recover from the stress of childbirth, the trauma of watching helplessly as my sick baby underwent surgery that kept her in the hospital for seven weeks, and then having major surgery myself. In fact, I never really recovered...not physically, anyway. I noticed that I was losing weight, my joints were suddenly stiff, painful and swollen, I was plagued with severe headaches, and I was constantly exhausted...not tired in a healthy way, either...utterly and completely exhausted. I was seeing a doctor, but he thought that if I would eat better and take more vitamins, I would eventually improve. When I finally could no longer stand the pain and began to lose some of my hair, my doctor sent me to a specialist in Houston, who interviewed me and determined that I was simply depressed. To his credit, he must have suspected an autoimmune disease because he ordered an Antinuclear Antibody Panel (click here to see what tests are run to determine autoimmune diseases); however, his attitude toward me was that of a busy, disinterested doctor, who didn't have time to waste on a young mother who was overwhelmed and, more than likely, suffered from postpartum depression. The problem with that line of thinking was that I was not depressed. I was quite content with my life, and had no sadness or sense of worthlessness whatsoever. I was sick, exhausted, in pain, and by then, running fever on a daily basis.
I returned to my local doctor to discuss the lab results, and he said that the Antinuclear Antibody test (ANA) was positive, and when coupled with all my other symptoms, suggested that I probably had an autoimmune disease such as Systemic Lupus Erythematosus. "Aha!", I said. "I told you I was sick! Now...what in the world is whatever the word is that you just said?" He told me that he didn't know much about it, but would do some research and get back to me. Hesitant to actually label me with a specific diagnosis just yet, he told me to throw away the unnecessary antidepressant medication the other doctor prescribed, and to keep a log of my temperature 3 times each day...morning, afternoon, and evening. It was a practice that I would adhere to for 18 long months, running a fever of 100-101 degrees every single day, as we searched for solutions to what was going so terribly wrong in my body.
I was eventually referred to a Rheumatologist, who ran a gamut of tests, and finally, it was clear that I indeed had Systemic Lupus Erythematosus (SLE). My ANA was a whopping 1:2,560 (normal is <1:40), and I fulfilled 7 out of 11 diagnostic criteria, including joint involvement, a malar rash (a butterfly shaped rash that covers the nose and cheeks), photosensitivity, oral and nasal ulcers, serositis (pleurisy and/or pericarditis,), leukopenia ( very low white blood cell count), and a positive ANA with a high titre. Fulfillment of 4 of the 11 criteria strongly points to a diagnosis of Lupus.
So what is Lupus anyway? As the name implies, SLE is a systemic disease, and can attack any organ, including skin, joints, and internal organs at any time. There are a couple of other types of Lupus...one involves only the skin (Discoid Lupus), and the other is drug-induced and disappears once the offending drug is discontinued. Since I have Systemic Lupus, that is the focus of this entry. Research estimates that at least 1.5 million Americans have Lupus, so it is not a rare disease, but it is misunderstood. Because it mimics so many other conditions, it often takes a long time to diagnose...sometimes even years. It is important to remember that Lupus is not contagious, and can range from being mild to life-threatening.In Lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses and bacteria and produces antibodies that protect the body from these "foreign invaders" in order to keep the body healthy. In autoimmune diseases, instead of forming antibodies against illness only, the immune system mistakenly identifies the body's own cells as the enemy, and attacks and destroys healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body. Lupus is a disease that waxes and wanes...sometimes, when in a flare, you are quite ill; other times, symptoms recede and life is a little less painful. Some people have been known to go into remission, but to date, there is no cure. There are, however, treatments that help alleviate symptoms (such as anti-inflammatory drugs) and drugs that suppress the immune system and slow down the auto-antibody production process. These drugs include antimalarials, corticosteroids and chemotherapy, and, most recently, monoclonal antibodies (Benlysta) and IVIG (IV Immunoglobulin therapy). Each of these treatments has side effects, some of which are very difficult. Because every Lupus patient is different, treatment must be tailored to meet the needs of the patient. For example, because I have a primary immune deficiency, immunosuppressive treatment is not an option for me; because I have Myasthenia Gravis, I cannot take antimalarials. I am thankful that I do receive treatment in the form of IVIG and am grateful to the many thousands of plasma donors who make that possible.
Through the years, I have suffered greatly from this disease. Lupus has attacked and damaged my joints, my skin, my heart, lungs, muscles, central nervous system, and peripheral nervous system. I have been hospitalized more times than I can count, and have endured multiple surgical procedures. Other than one short stretch of time when I was in complete remission (a result of answered prayer and a miraculous work of God in my life), I do not think I have had a single day when I was free of pain. That being said, I must make it clear...I may have Lupus, but Lupus doesn't define me! There are so many things that make me who I am...my undying faith and love for my Lord and Savior, Jesus Christ; my husband, my family, my friends, music, dancing, my online ministry and support to those afflicted with autoimmune disease...all bring me joy and are so much more important than the pain and inconvenience of having multiple diseases. I pray that God continues to fill my heart with HOPE and that my life, in some small way, makes a difference. I had a sweet visit with my brother the other day, and he reminded me that the Bible says that I have purpose; in fact, God created me with that purpose in mind; I am His masterpiece! I guess that is why, though my body has waged a raging battle against me, I have fought back like a fierce warrior and thus far, through the power and strength God has given me, I have lived to tell about it! There is a message somewhere within me that He wants me to tell, and I am willing to be the vessel...broken and spilled out, though I am...to share it.
If you think you may be suffering from an autoimmune disease such as Lupus, and would like more information, please visit www.lupus.org.
God bless...
"Before I formed you in the womb, I knew you, and before you were born, I consecrated you..." ~Jeremiah 1:5a~
