What do you want others to know about lupus?
Lupus has no cure. It is very painful and causes alot of fatigue. In living with Lupus, if u don't tell people what it is, they will never learn. I am currently in the Illuminate Study, trying to do my part to help find a cure. Life with Lupus has no guarantee. We don't/can't make plans to do things in advance. I have Lupus, it does NOT have ME!!!!
Why is lupus a cruel mystery to you?
I cannot stand not being able to do things. I have always been independent and am getting to where I have to depend on others to help me with some things. Little things, like opening jars. I don't like having to stay in bed for days, because I hurt too bad to do anything. My biggest fear is not in dying, but not being around to see my kids graduate, get married, have kids of their own. My even bigger fear is, my kids getting this awful, horrible, disgusting disease!! People ask me, how did u find out, how do u know, what are the symptoms??? My main answer is you do not want this and I would never wish it on anyone, of course, after I answer each question the best that I can. Lupus is just a mean wolf, that makes no sense. Why does the disease even have to exist? Why am I the only one with it? (No other family members) I was sick all through growing up, the dr never knew what was wrong, they didn't tell much about it then. So it is very important to spread Awareness, so if someone is diagnosed, they wont sit and shrug their shoulder and say and... like I did. I didn't know what it was or that there was such a thing. And find a dr that cares to know about the disease and treat it, not someone like my first one, that doesn't care!!
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