Diagnosed at 53

What do you want others to know about lupus?

I would like others to realize Lupus is much more devasting than what most of the public think it is. Although the effects of Lupus can be as wide ranging as those who have it, it can change one's life forever. Even though those of us with Lupus may look OK and act as if there is nothing wrong, looks can be deceiving. Lupus is with us for the rest of our lives.

Why is lupus a cruel mystery to you?

Lupus has created a completely new me. Lupus has changed my life significantly in that it is very difficult for me to do what I used to be able to do. I am still able to work so far as long as I take good care of myself in the evenings and weekends which means my life is made up of working, grocery shopping, doing a few errands and being at home. The scary thing about having Lupus is I never know what is going to happen next. I might be OK in the morning and not be able to walk in the evening. I've already developed heart problems as well as blood clots which alone have affected my life. Some days are better than others and I attempt to keep a good attitude because I believe it's our attitude that affects how we respond to conditions such as Lupus. Do I wish I never had Lupus, absolutely. Lupus is something that will be with me for the rest of my life. It may direct various aspects of my life yet, I'm working hard to remain true to the person I really am and to my soul.

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