Our journey with Lupus began in December of 1988. It was my freshman year at UW-Oshkosh. My toes were turning purple after walking to and from my classes. I decided to get it checked out when the purple discoloration went up my leg to my knee. Many tests were performed as many different things were happening at the same time: vasculitis (inflammation of the blood vessels) in my leg, pleurisy (inflammation of the tissue surrounding the lungs, which made it hard for me to breathe), and glomerulonephritis (inflammation of the membrane tissue in the kidneys – which causes inefficient filtering and excessive protein in the urine). With medication and treatment, the vasculitis and the pleurisy subsided. My kidneys, however, were damaged. During these frustrating months of tests and hospital stays, my parents and family were by my side. My Mom insisted on finding the cause to all these symptoms. She asked the doctors if starting the birth control pill a month earlier had anything to do with what was happening in my body. The Dr. assured her it didn’t. I was, however, taken off the pill until my symptoms subsided. “Undifferentiated connective tissue disease” was the diagnosis. The doctors suspected Lupus at that time, but I didn’t have enough positive test results to diagnosis it. After taking the spring semester off to heal, I went back to college life as I knew it. In May, I started birth control pills again. My toes turned purple within 2 weeks, and I stopped immediately. My toes returned to their natural color within a week. My Mom was now convinced that the two were connected. And I ALWAYS listen to my Mom, so I never took another birth control pill again!
In October of 1994, Brian and I were married. We visited a Neonatologist in Madison to discuss my medical history and the possibility of starting our family. The doctor was cautious because this time, my antiphospholipid antibody test was positive – specifically the anticardiolipin antibody. These antibodies typically cause two kinds of problems: narrowing and irregularity of the blood vessels and blood clots in the blood vessels - which can then lead to stroke, heart attack and miscarriage. He started me on one baby aspirin a day and told me to find a high-risk OB/GYN. In November of 1996, we lost our first baby in a miscarriage. Before trying to get pregnant again, we visited many more doctors looking for answers. In the summer of 1997, we became pregnant with Emma. My high-risk OB/GYN started me on Lovenox (a blood thinner which I injected into my stomach twice a day). Things were going very well until my 5th month of pregnancy. I woke up with a severe headache that got progressively worse throughout the day. I was so dizzy and nauseous that I couldn’t lift my head. I spent a week in the hospital enduring many tests. The doctors concluded that I had a stroke. I was put on bed rest for the remainder of my pregnancy. From that point on, I saw my high-risk OB/GYN twice a week. Because my anti-Ro/SSA test was positive (also an indicator of Lupus), an ultrasound was done weekly to make sure Emma was not developing congenital heart block. Congenital heart block is an abnormal condition in which the heart beats slowly. Emma continued to grow strong and healthy. Things were pretty quiet for the next 4 months, with the exception of a rash on my chest and upper arms (another Lupus symptom) the last month of my pregnancy. Then the big day arrived. After enduring 38 hours of labor that ended with a safe and successful cesarean, we finally got to hold our miracle!
Two days after Emma was born, I developed a severe headache, which the nurses treated as a migraine. By the time the Neurologist got there, I was semi-conscious. He moved me into the ICU and ordered a cat-scan. Before the test was over, I was unconscious. The cat-scan showed an increase in pressure in a ventricle in my head. The Neurologist called in a Neurosurgeon, who immediately inserted a brain tap to relieve the pressure on my brain. After 2 days of draining fluid and many tests to determine why my brain was swelling, the doctors concluded that vasculitis had attacked my brain and I had suffered a Lupus flare. FINALLY, I was diagnosed with Systemic Lupus Erythematosus (SLE). Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys. The body's immune system normally makes proteins called antibodies to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens. In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues, pain, and ultimately, irreparable damage.
With major doses of steroids to reduce the inflammation, I began my recovery. The only residual effects I had were double vision and loss of balance, which eventually subsided over the next few months. In all, I spent 8 days in the ICU. Meanwhile, Emma was already at home, being taken care of by my Mom, Brian’s Mom, my sister Jenni and Brian’s sister Barb. This allowed Brian to spend his time with me in the hospital. We are blessed to have such loving, caring and generous families and close friends who helped us get through this life-threatening Lupus flare.
I have been on 3 Lupus medications since Emma’s birth. I live with daily joint pain and fatigue, which by mid-morning on most days is manageable. I also have cognitive impairments such as memory lapses, difficulty concentrating, headaches, and poor word-association – all of which come and go. The doctors have advised us that the chance of Lupus attacking my brain again is very high. My Lupus is triggered by the hormonal changes that occur with the onset of pregnancy. This would explain why I had problems when I was on the birth control pill. The risk of another pregnancy is far too great. We are so blessed to have Emma in our lives!
We have been fortunate that I have only had a few flares since Emma’s birth – most of which were caused by high amounts of stress. The most recent flare happened shortly after Brian’s Mom went to heaven in January 2006. The fatigue and joint pain was so debilitating that it took all the strength I had to bring Emma to school in the morning, come home, sleep all day, and pick her up at the end of the day. This flare also brought about some heart issues that are being watched. With the help of Prednisone (steroids), this latest flare is now under control. I see all my specialists on a regular basis to keep close tabs on all the organs that have been affected by my Lupus flares.
I am so blessed to have a loving, understanding and patient husband and daughter to help me get through my rough days and to enjoy my good days. Both my family and Brian’s family have gone above and beyond to help us in my journey with lupus. My prayer is that continuing research will find a cure for this disease.
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