How to live with lupus

My Story: My Struggles and Victory in Living with SLE (Lupus)

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The doctors said that additional tests were needed to evaluate the extent of the damages done to my kidneys caused by SLE. If it was serious, I might have to go for dialysis or a kidney transplant. It scared the wits out of me! “I want my mum!”, “God where are you?” I became a very frightened little girl thinking that my days were numbered.

After the biopsy and tests, it was confirmed that I had SLE marked with nephritis. There was no need for dialysis or a transplant yet but more drugs were added onto my existing concoction to control the disease. I was informed of some of the side effects of my medicines. That one drug that left a deep impression on me was prednisolone a corticosteroid drug - to control lupus. Corticosteroid drugs when used for an extended period may produce changes in physical appearance such as weight gain, puffiness of the cheeks, thinning of the skin and hair, easy bruising, stomach discomfort, depression and mood swings, diabetes, increase the risk of infections, cataracts, osteoporosis (thinning of bone). Because of my lupus nephritis, I was also given a cytotoxic drug “azathioprine”, a highly toxicities drug that would cause gastrointestinal disturbances and increases a patient’s risk for the development of cancer. These side effects that were mentioned, I have “tasted” them all. (I will share my experiences with you in the later part of my story.)

My dengue fever was actually a blessing in disguise according to the doctors. As SLE was not easily detected, the symptoms were somewhat similar to be flu-like. Had it not been for my dengue fever, my lupus condition might not be detected at this stage. The consequences would have been disastrous.

I had experienced fear, depression, confusion, anger, pain, anxiety during my stay at the hospital. I wished I could just sleep it off and wake up feeling a new person again. Indeed I had become a new person who had to live with Lupus for the rest of my life! I did not want to think anymore, I just wanted to go home.