What do you want others to know about lupus?
I would love for people to actually realize that if I look healthy than there is nothing wrong with me. Or if I am tired for several days that it is not because I am lazy. I want them to know the steriods that I was on for so long is the main reason behind all the weight I gained, it is not because I eat all the time. I feel so alone in my illness.
Why is lupus a cruel mystery to you?
I think the biggest impact in my life is how much I had to change and accept with this illness. Everything changes in your life, from keeping track of your many different doctors. Getting use to the new ways Lupus takes over your life each and every day. Learning to accept family and friends viewing you in a whole new light. Sometimes I feel like they want no part of me or my illness. My kids live in Oklahoma and normally it takes me to call them, they never seem to have the time to call me. My husband and I live in the same house but yet we have became strangers. He seems always angry at me because I am sick, or I need to see this or that doctor and we need to go for this test or another. His drinking is growing more and more out of control that it makes me angry that he is flushing his life down the toilet when I am fighting with every breath I have to not let this illness beat me. And it's not just his drinking, I get angry when I see even complete strangers throwing their life away on drugs and such. I am mad because they have no clue about how wonderful life is and each day I face something new that my illness deals out to me.
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