What do you want others to know about lupus?
Do NOT read old Library Books about Lupus, the outdated information will scare you unnecessarily. Do NOT think you are alone or a victim. Do NOT try to self treat, your doctor and a rheumatologist are the key to your quality of life and longevity. DO TALK about your symptoms in great DETAIL with your doctor (take a list so you don't forget anything).
Why is lupus a cruel mystery to you?
I have been diagnosed for over 2 decades but I am still struggling to come to grips with who I am. Lupus changed and continues everyday to change my perceptions of my own identity and importance in the world. It can be so debilitating that I wonder what the purpose of this endless suffering and "stillness" of my life is. Instead of my life being about my personal goals and aspirations; it is about doctors appointments, reading up on medication side effects, resting more than being an active participant in life and learning to accept far less than I had hoped my life would be. This is the hardest part of my life with Lupus. I have become so accustomed to the pain that I barely think of it as an issue, but, what it means, what the illness and the stillness of my life means is the biggest puzzle. I tell myself that my thought process (rather than why me?) should be: "Why not me?" Indeed, I have many talents, but I am no more valuable than any other person on the planet. To say, why me is, in essence, a belief that I am special enough that I should have qualified for some exemption from this illness. It seems that medical advances have suceeded in extending lifespan while simultaneously extending a poorer and poorer quality of life as patients age. And the question remains...what is this all about? Copyright 1/19/2012
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