The symptoms of my Lupus initially presented in the fall of 2002, my final year of Optometry at the University of Waterloo. It started simple enough; I woke with joint pain and stiffness in my hands, within in a few days I also started getting a patchy rash that ran along my hairline and across my cheeks. At the time I was doing a 4 month externship in Nipawin, SK. I assumed that I was having a reaction to all of the grain dust in the area, since I was living there during the harvest. Being from New Brunswick, I had never been exposed to this, so it made sense to me.
By January 2003, the rash was getting worse, and now the joint pain and stiffness in my hands was lasting all day. I was doing another externship in my hometown of Perth-Andover, NB; my mother of course was concerned and suggested that I go to see our family physician. The physician told me that I was having a contact dermatitis and gave me a prescription for cortisone cream. This didn’t even address my joint pain! When I returned to Waterloo, ON to continue my classes I booked an appointment with my doctor at the University Clinic; when I told her why I was there, she looked me right in the eye and said, “Is there Lupus in your family?” It was such a relief to have someone with such insight on my side! Blood work confirmed Systemic Lupus Erythematosus (SLE). My doctor referred me to a rheumatologist, who also confirmed a diagnosis of SLE, and the management of my disease began; this was in March 2003!
My rheumatologist was very proactive; he suggested I keep a log of how I felt each day; I was able to track my pain, fatigue, hair loss and rash; this enabled me to determine what I did that made me feel good and what also made me feel bad. I quickly learned that STRESS was my trigger; at the end of April 2003 I was writing my exit oral examinations in order to receive my Optometry Degree, trying to find a job, and worrying about my licensing board examinations at the end of May. I was suddenly experiencing unbelievable fatigue, I could barely hold a book, my muscles ached everywhere, my hair was falling out in patches, and I had a constant fever of 101-104F. I called my rheumatologist; he immediately put me on high doses of Prednisone, which I would taper over the next 4 months and Plaquenil. By August, I was feeling 100% better, I was just finishing my Prednisone and I had stopped taking Plaquenil; I had passed all my exams and found a full time position in Meadow Lake, SK starting in September. Life was good!
In August 2006, another major stressor reared its ugly head; my practice was going well, but we were running out of space, so a new building was purchased and renovations began. The plan was to have all of the renovations complete by the end of September, but it seemed that everything that could go wrong did! I started taking Plaquenil again and I thought I had been managing my lupus very well, but one evening I received a call from my rheumatologist who informed me that my last round of blood work was not good; I needed to get my white blood cell count under control. This would require intravenous steroid for the next 3 days, but it did not seem to help, I was starting to feel worse. This flare was totally different than my first flare; yes, I had a butterfly rash and yes, I had joint and muscle pain, but there was no hair loss, no fatigue and definitely no fever. Blood work and other tests confirmed that my lupus had damaged my kidneys. I was immediately referred to a nephrologist who diagnosed me with lupus nephritis and prescribed Cellcept, an immunosuppressive drug.
I was relieved to have the appropriate treatment, but devastated that after 6 years, my husband (Blair) and I were going to have to put starting our family on hold, again. One of the side affects with Cellcept is birth defects, so although I was getting better, children were out of the question! I continued on Cellcept for 3 years; during that time, through trial and error, I learned that eating frequent, small, healthy whole food meals, regular exercise, appropriate rest and a routine schedule seemed to be the answer to feeling good and keeping stress at bay. My butterfly rash, which was always so obvious, began to fade, I had more energy and my joints and muscles did not ache. Each subsequent visit to the rheumatologist and to the nephrologists showed more and more improvement. I was feeling good and looking healthy, at last. In December 2009 I was able to stop the immunosuppressive drug, I was so excited, but only time would tell how my body and my lupus would respond.
By April I was still feeling great! I knew that Lupus Canada’s Walk a Block was coming up and decided that we needed to participate in Meadow Lake. I organized a 33KM walk; although everyone thought I was crazy for walking such a distance, I wanted to do it because I COULD! The walk was a success and I completed the full distance with no problems; I even felt good the next day! Shortly after my 33 KM walk I found out that I was pregnant; after nearly 10 years of marriage, Blair and I were going to have a child, we were both so excited! I spoke with my family physician, my rheumatologist and my nephrologists; they all agreed that since I had been doing so well, now was the best time; talk about Luck!
Unfortunately, although I felt great and had no obvious problems with my pregnancy, my luck ran out. At 11 weeks I had a miscarriage; Blair and I were devastated; I kept thinking that I must have done something wrong, but after several lengthy discussions with doctors and friends, I realized that it happens all the time, especially with lupus.
I am still feeling great, I do blood work monthly, which so far has been good. I continue to eat healthy, exercise regularly, get lots of rest, and we are still trying to have a baby. I have simply decided that lupus will not control me, I will control it! With any luck Blair and I will have a new baby that I can push in a stroller during the 2nd Annual Walk a Block in Meadow Lake.
Living with Lupus since 2003.