Diagnosed with lupus in 2010.
As a child, I was so hyperactive that my parents even roped me to a tree on a camping trip to keep me from running away! As an adult, my deep energy reserves became my secret weapon for enduring 60+ hour workweeks, Bikram hot yoga sessions, distance cycling events, and multi-day backpacking events throughout my 20’s and 30’s. Until my formal diagnosis with lupus in 2010, I would have said that I was an exceptionally healthy person—despite a few seemingly random events.
I have had relatively few illnesses during my lifetime. During my youth, I had a bout of “walking pneumonia” (atypical pneumonia), and I later contracted a more serious case of viral pneumonia in college which required me to spend two weeks in the infirmary under a physician’s care. All in all, I have had four mild cases of pneumonia (though I spent most of my career working in schools where fighting cold and flu viruses is part of the job).
I developed arthritis in my late 20’s in my left (dominant) hand. I saw a rheumatologist when my forefinger joint became red and swollen. He tested me for rheumatoid arthritis (negative), gave me a steroidal shot to the joint, and that was it. Though the arthritis in my hands occasionally flared from time to time, I didn’t worry about it and assumed it was early-onset osteoarthritis (which is what several primary care physicians said over the years when I would mention it up during my annual physical).
In 2000 after I turned thirty, I quit my job and spent five months backpacking India and Nepal. During my trek, I made an effort to connect with local people and though I was cautious regarding my hygiene and eating habits, I contracted Typhoid fever (despite having an inoculation prior to the trip). Suffering from dehydration and severe symptoms, I was hospitalized in Goa for about one week. Nevertheless, I eventually recovered, and in a few weeks, I continued on my trek to the Himalayas. When I returned home, I went to the doctor for a battery of tests as I had lost a fair amount of weight, and I tested anemic for the first time. At that time, my doctor thought that I might have temporarily damaged my intestinal lining from the infection—I didn’t give a second thought about it.
During my thirties, I continued to travel the world, work long hours, and exercise regularly. My arthritis gradually worsened and in 2008, I stopped backpacking due to hip, back, and knee pain. In 2008, I also had an endoscopy as I was suffering from a variety of G-I symptoms in my esophagus. The results suggested minor congestion & inflammation—though I refused to take medication, and I began to experiment with various anti-inflammatory diets.
In 2009 and at the age of 41, I became pregnant for the first time. All went well until my 6th month, when I was put on immediate and strict bed rest for IUGR (intra-uterine growth restriction) and fetal distress. Suddenly, I had to quit my job and lay on my left side for days at a time hoping not to lose the baby. My muscles quickly atrophied and on the few occasions when I could walk, I was easily winded. Though I understand why physicians use bed rest as a “cure” for fetal distress, I believe it compromises the health of the mother to a serious degree. While my daughter was born healthy at 5 pounds, I stayed in the hospital for four days suffering from anemia, and I received two IV’s of iron. Once home, I could barely lift myself off the sofa or climb the stairs for months. My doctors said variously, “You’re retaining fluid from the C-section,” “You’re a new morn,” and “You need more sleep.” All of those things were true, but they didn’t explain the new all-over body aches and bone deep fatigue that had me lying down most of that year.
At my husband’s urging, I kept complaining to my primary care physician that I just didn’t feel like myself. In March 2011, I tested positive for something called the antinuclear antibody (ANA) test. “No worries,” said my doctor, “it’s probably a false positive.” In June, I tested positive for more serious markers (having been referred to a rheumatologist): anti-dsDNA, anti-phospholipid antibodies, and anti-cardiolipid antibodies. At that point, I was given a clear-cut diagnosis of Systemic Lupus Erythematosus ME). I was in shock. My only association with lupus was the sibling of a high school classmate who died of the disease as a young man. Overnight, I became a sick person suffering from a chronic and incurable disease—it was inconceivable.
If I push myself, I end up with a lupus flare. Lupus flares differ from person to person, but for me, it feels like the flu.
How has lupus affected me? For starters, I have about half of the energy that I used to have. While I may have had the seeds of autoimmunity for many years, I believe that my pregnancy (or bed rest) caused an irrevocable change to my body: I am simply not the same person in terms of my energy, stamina or strength. If I push myself, I end up with a lupus flare. Lupus flares differ from person to person, but for me, it feels like the flu. I wake up with a puffy face and body, fatigue, mental fogginess, lack of appetite, and arthritis in multiple joints—it’s sort of like waking up in the body of an 80-year old with a nasty hangover. Currently, I take 400 mg daily of PLaquenil (hydroxychloroquine) which is a first-line defense drug against lupus. I don’t think that it helps greatly with my symptoms, but I do hope that it will prevent the disease from becoming more active. I get my blood and urine tested several times each year to make sure that the disease is not affecting my internal organs. So far I’ve been lucky. But, the pattern of autoantiboclies that I have means that I am more likely to develop organ-threatening lupus in the future, I also exercise as regularly as I am able and follow an anti-inflammatory diet. I also recently developed photosensitivity which 60% of lupus patients suffer from—exposure to the sun generally causes a flare in my symptoms.
Prior to lupus, I had hoped to return to my career. Now, I don’t know what I will do. Every choice in my life now is centered upon minimizing stress to my body and keeping lupus at bay as long as I can.
Update: As of Fall 2014, Maggie’s lupus has continued with its ups and downs, and she has specifically struggled with the use of her hands and wrists. She went on a course of CellCept (generic mycophenolate) and has just started a new biologic infusion specifically developed to treat SLE, Benlysta).