Paulette's Canadian Story
I had known something was wrong for a long time. Having a baby was an energy-draining event in 1993, to be certain, but this fatigue was 'different'. I told my husband that I felt like this was "the beginning of feeling tired for the rest of my life"! Of course, we would shrug it off, because having an infant in our home for the first time seemed to be the obvious explanation for my exhaustion.
After six months with no change in my energy level, I had a chat with my doctor: "Can we do a complete physical with blood work?" I asked, trying to explain the depth of my fatigue. "I don't feel right inside. I'm tired 'in my bones'." I was sure the medical world would find IT, the source of my malaise. There was more to my tiredness than motherhood. After all, I was adapting extremely well as a new Mom, and my beautiful baby boy had started sleeping through the night! I was disappointed the next week to discover that all my medical results were normal.
One year later, in 1994, I went back to work. I had decided that I must be really bored and unchallenged at home, and that what I needed to boost my stamina was a stimulating career. And so I got myself one of those multi-tasking, detail-oriented, high energy jobs! That should do it, I thought. Not surprisingly, the tiredness persisted. A new career, day care for my son, and my husband working shiftwork. Tired? You bet. But still, I felt sure there was more to blame than the obvious drains on my energy. My doctor assured me I was wrong.
My career was demanding and I knew I was 'burning the candle at both ends'. With no acceptance of my condition by my doctor, and my own sense of loosing control, I decided to speak to a psychologist and see if I could work it out from an emotional point of view. What if I was not dealing with life in the healthiest ways and what if I was creating a way out for myself through an illness? Whether the illness was purely emotional or not, I decided I needed some kind of support. And so, off I went to explore my inner health. After a few sessions, I discovered I was not clinically depressed and certainly not suffering from a mental illness. I was very relieved and felt that I had found some kind of proof that a true physical condition existed. I revisited my doctor and happily shared this information with him. He was not as enthused as I was and referred back to my busy schedule as a Mom and career woman. Ultimately, I began to feel that I was wasting his time and so, reduced my visits as much as possible.
By 1998, I was in trouble and I knew it more clearly than ever. The problem was that no one else did. My list of complaints was growing. The resulting medical tests, which were accumulating now, were consistently normal. There was no plausible explanation for the joint pain I was suffering now and again. It was difficult trying to explain that my joints did not hurt all the time, and that the pain moved around randomly. It was not uncommon for me to have a couple of weeks of insomnia each month, perhaps because I kept myself so involved at work that my adrenalin was pumping all the time. I developed a sensitivity to weather changes, and the light bothered my eyes. I was "catching the flu" every other month and using lots of Ibuprofen to ward off daily headaches. My neck and shoulders were stiff and paining each morning. I felt miserable.
I became determined that my doctor find the cause. In spite of his calm patience, he was getting frustrated with me. I knew that he had my well-being in mind. But my heart sank the day he firmly suggested, "maybe you should see a psychiatrist; I don't think there's anything more I can do for you." The possibility of a mental-health disease had been ruled out, but fear gripped my soul when I heard my family physician say that out loud. We were back to this again and it was more than a suggestion this time.
What happened next? I got angry! I decided to self-treat my 'syndrome', as I had named it. I was not going to take drugs for some vague anxiety disorder! The only reason I was anxious was because we did not know what was wrong with my body. And so began the ultimate pursuit of health and well-being. I joined the outdoor Women's Soccer League, determined to build a strong body and shake off the fatigue by getting plenty of exercise and lots of sun. I decided I must have a weak immune system, so I boosted it with every vitamin from A-Z, as well as a few of the immune system-boosting herbs. I started regular massage therapy, and kept taking Ibuprofen so I would not feel the joint pain. I read a pile of books on alternative approaches to nutrition. I was going to heal myself once and for all!
That was the Summer of '99. It was great to have been so active. For a short while, I felt somewhat energized. Little did I know what was yet to come. By October 1999, within two months of embarking on my new health regimen, I was flat on my back in bed, sleeping almost around the clock. The joint pain had increased and now coursed throughout my entire body. I suffered from an 'eternal flu'. I was forced to leave work on an extended sick leave.
By March 2000, seven years after my earliest symptoms, a sudden and inexplicable bloating of my feet sent me scurrying to the nearest clinic. I continued to swell: the shape of my ankles and toes disappeared as my feet continued to bloat. A band of fluid began to accumulate across the small of my back, then spread to include my abdomen. Test results were no longer normal. The cause was immediately obvious to medical professionals: my kidneys were loosing too much protein. But why?
This was a medical crisis. My doctor, finally assured beyond the shadow of a doubt that my illness was real, moved quickly to treat me. Within days I was meeting with the medical specialists who would become my regular health support. My rheumatologist (lupus specialist) and nephrologist (kidney specialist) both suspected SLE, systemic lupus erythematosus with organ involvement.
Systemic lupus erythematosus is a chronic auto-immune disease which causes inflammation of various parts of the body, especially the skin, joints, blood and kidneys. In July, I underwent a kidney biopsy to determine the type of kidney disease and the extent of the damage, and to identify once and for all which face of SLE we were dealing with. (Coincidentally, while I was in hospital, a red skin rash developed across my cheeks and nose. Yes, I was displaying an obvious butterfly rash!) Several weeks later, I was informed that I had lupus nephritis, or SLE with kidney involvement. Wow! The pieces of the puzzle were quickly falling into place now. Was I shocked? Not right away. I had known something was wrong for a very long time. Was I relieved? Very! I finally knew the name of IT, this nameless elusive illness that had sapped my strength, and I knew now that others had to believe me. I knew that there was a treatment and action plan that could be taken. And secretly, I knew for sure that I was not crazy!
As I look backwards from that point, my list of problems or 'syndrome' made sense. Lupus is characterized by many symptoms, which can vary from person to person. Among the most common are: prolonged flu-like symptoms, excessive and profound fatigue or weakness, skin rashes, sun sensitivity, achy joints (arthralgia), swollen joints (arthritis), and kidney inflammation. It is important to note, however, that each person who has lupus has a unique combination of symptoms, and does not necessarily suffer from all of them. The degree of severity varies from mild to serious, as well. If you are concerned about what you are reading here for yourself or a loved one, be sure to speak to your doctor promptly.
As I write this, I am slowly recovering from kidney disease. My hope is that not only will my kidneys be saved, but that the lupus will go into remission for a lifetime. I enjoy a strong support system made up of the most wonderful people: medical experts, friends, alternative health professionals and family. My husband has always believed in me, and our family of three have adapted to the lifestyle that's needed to deal with lupus. We are essentially happy and my life is very good.
To all those who suffer from SLE, I encourage you to find hope. Surround yourself with the most loving people and best support you can find and draw from their love and strength. And whatever battle you are fighting at this time, as it may be very different from mine, I encourage you to never give up. And when you are well, pray for those who are not. And when you are not, let go of the fear and rest and pray. For you will be well again.