"I praise you because I am fearfully and wonderfully made; your works are wonderful."
(Psalm 139:14)On 17 July 1998, my lupus was declared to be in remission. However, I have not been, and probably never will be, declared free of lupus. Lupus is a life-long, and sometimes life-threatening, condition. Most people call it a disease, but not me, never ... and I'm not about to begin now.
I was first diagnosed with lupus after a weekend at the beach in mid 1994, when a red mark on the bridge of my nose refused to go away, even after six weeks, and I eventually went to see the company doctor who then referred me to a skin specialist. The skin specialist put me on a whole series of blood tests. When the tests came back, all he said was lupus was a disease that could affect other organs, but from my blood tests, it hadn't affected beyond the skin. But he didn't really explain what lupus was, and what precautions I should take, except that I must not listen to what other people say. The other thing I remember from those early visits was the mention of the term "discoid lupus" which I thought meant something to do with the skin (especially since I had a red mark across the bridge of my nose).
A year later, repeat blood and urine tests showed up something in my kidneys and I was sent to see a kidney specialist who fully explained to me what the condition is all about. It was then that I actively sought information on lupus on the Web. But still, I was not fully aware of what lupus can do to my body.
Another 18 months or so later, I developed bad joint pains, and pain upon breathing. I asked one of the two specialists (I can't remember who) for a rheumatologist I could see. But I didn't immediately make an appointment, I was very busy at the time. By the time I saw the rheumatologist in mid 1997, my breathing difficulties were really bad - I had stabbing pains on my left shoulder, and I could only take shallow breaths in order not to hurt my lungs. I'd read up on the subject and suspected pleurisy. My regular doctor did not think so. When I eventually saw the rheumatologist that day in mid 1997 and explained my symptoms, he put me on the usual blood and urine tests, plus chest x-rays, an echocardiogram, bone density tests, etc.
The chest and heart results confirmed my suspicions - involvement of my lungs and heart. The rheumatologist increased my medication and monitored my progress on a monthly basis. Month by month, he was able to decrease my medication until now, a year later, my lupus has been declared in remission. I'm almost back to the maintenance dosage of 10 mg of Prednisolone every other day (which will be further decreased to 7.5 mg every other day in a month's time), and 200 mg of Plaqueneil (Hydrochloroquine) a day. I'm also on calcium supplements to counter the bone thinning effects of Prednisolone. Things are almost back to normal for me, and the one thing I have learned from this recent flare is that I must always take my lupus medication.
What is lupus? Simply put - and from my own understanding of it - lupus is an auto-immune disease in which the body's production of antibodies goes haywire. Often, with no foreign cells to attack, the antibodies then turn on the healthy cells in the body itself. This is why lupus has been known to attack most organs in the body. Specifically for me, lupus has affected my skin, my joints, my heart and my lungs.
In the four years since I was diagnosed with lupus, encouraging progress has been made in the study of the condition. In my case, while the various tests show that lupus is not present in my body on the whole, two particular tests - complements 3 and 4 - show that not only is it still there, but that my type of lupus is hereditary. This means it is probably present in the female members of my family - my mum, my sister and my niece. What I need to do next is to encourage them to go for specific lupus-related tests.
I have heard that other lupus patients, especially the more active ones, have found it difficult to adjust to their condition. This is because lupus demands a total change in lifestyle, one that involves less activities and time in the sun. Me, I've always been pretty laid-back, so my lifestyle does not really aggravate my lupus. However, having said that, the one thing I try to do now is to not let anything upset me, cuz stress is very harmful to lupus. That, too, I seem to be handling pretty well, if the recent change of my lupus status from major flare to remission within a year is anything to go by!
Yet, it is more than my own ability to handle stress that has helped to tame the lupus in me. It is the Lord's Hand guiding me through these past four years. The day I found out my lupus was in remission, I found myself thinking that I was fearfully and wonderfully made by the Lord (Psalm 139:14). And this is all there is to my lupus story.
There is little more I want to say about lupus beyond my own experience. If you want to know more, I will point you to other sites with more authoritative information about the condition. I also highly recommend a book approved by the Lupus Foundation of America Patient Education Committee.
Lupus Links
Lupus Foundation of America Lupus Home Page MCLFA Lupus Content Area
Recommended by the
Lupus Foundation of America
Patient Education Committee
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