Lupus, short for Systemic Lupus Erythematosus, is an autoimmune connective tissue disorder. Autoimmunity is when the body’s own defenses attack their own body. It’s not that the body’s defenses are weak. On the contrary, they’re strong, but they’re shooting their friends the joints, the internal organs, the heart and lungs, the brain, muscles, and the circulatory system, amongst others. It’s like friendly fire in a war. SLE causes inflammation and therefore pain. It’s a loaded gun in the hands of a nut, unpredictable. There are periods of remissions (quiet) which can be as long as a year or more, and flares (active illness). This makes it hard to diagnose so people like me get a diagnosis after fourteen years after the initial sign, others never do. There is no cure for it but it can be treated in the sense that symptoms can be managed, flare ups prevented, and complications recognized and dealt with early. It can be fatal although survival rate is rising, in countries also up to 95%.
Some entries in this blog shall be written retrospectively. Hopefully the reader will understand my story and the condition better. Obviously, no SLE sufferer is like another, so my story is different from the others’ and what works for me might not for someone else.
A good book to read about Lupus is Mastering your life with Lupus by Sally Pederson.
Back to my story, since 1992 I have been seen by various doctors, general practitioners, dermatologists, acute emergency and acute medicine consultants with a variety of seemingly unrelated health issues. They all failed to see the full picture, just like I did myself after all.
Having said this, maybe also due to my own clinical focus (Urology), I was aware of the existence of SLE but ignorant to the wide variety of signs and symptoms of the condition and how easy it is to miss it at all. Eventually, there might have been a time when I have also subconsciously denied admitting that I was affected by this condition. That time is now past!
During my latest admission to hospital I have read a book by Paulo Coelho titled, ‘Like the flowing river‘ which narrates episodes and writings of Paulo’s life. This blog will be describing my flowing river…..my life with Lupus, living with the Wolf, acknowledging it, trying to overcome limitations and making the most out of life, when and as possible.