I do not often think about my Lupus, but I have been asked several questions about it lately. The questions are perfectly polite mostly dealing with having a family or friend just diagnosed and wondering what tips or advice I have to help others. The questions always lead me to retelling my story of how I was diagnosed (while trying to get pregnant the extra Estrogen sent my body spinning). It then leads me to explain my symptoms (achy joints, severe weight loss, fatigue, fevers and depression). We talk about how hard it is to diagnose such a mysterious disease and then how hard it is to get proper treatment. I usually refer my doctor to them because he is a great rheumatoidologist and has been crucial in getting my blood levels under control. I then give a shout out to Plaquenil the miracle drug that saved my life, but I always caution its major side effect blindness (I know…a biggie, but rare). At some point they send their infertility regrets, but I share about my son that we adopted and how infertility lead us to him and how good God is to save me from sickness in a pregnancy and how trying allowed me to learn about my disease.
I know a lot of info with a simple question, but four years since being diagnosed has made this process more normal. Lupus is different for everybody so I have no idea if my story helps, but I know it shows people they are not alone. To the family I stress how tired the disease makes us feel and how every sickness could be or could not be a sign of Lupus. I stress how in an instant your body could fail you from something as small as an allergy and how I do not take one healthy day for granted as I know bad blood work could change my life in an instant. To really try to understand this disease is difficult, but it is so much more manageable than fifty years ago.
The good news is : I am currently on 3.5 mg of Prednisone and 400 mg of Plaquenil daily, but summer is coming! I am so photosensitive but love the sun! Summer is my best friend and worst enemy all at the same time!