What do you want others to know about lupus?
I am the face of Lupus. I HAVE lupus but it does not define me, nor does it own me. I am a warrior against a silent killer. I put on a brave face every day despite the pain this disease keeps me in. What is most important for others to know is we need funding NOW to find out why this insidious disease exists and how to cure it!!!
Why is lupus a cruel mystery to you?
Wow...what hasn't it impacted. My medical chart is the size of a file box. I can't get health insurance. I can't get life insurance. I have to go through years of fighting government agencies to get even the basic assistance. All of the "ism's" that piggybacked on to the lupus keep me sore, tired, in pain, or just plain out of it so much, I'm only able to work 20-25 hrs a week. As a single parent, I can tell you it's not enough to raise a puppy let alone a child. I will say, I force myself to work those hours so I can get out of the house. I have lost friends because they do not understand the nature of this disease. I have lost my ability to carry on complete conversations without having 'lupus fog' moments. I'm sick of hearing "But you don't look sick". I hate to see lupus constantly lose out on funding. BUT, the biggest impact this insidious disease has had on my life is it has showed me who my true friends are AND opened up networks of people who are JUST LIKE ME. I don't have to be afraid to say, "I feel like garbage today" and have to come up with 10 reasons why I feel that way. They know. They love unconditionally. They are fighting the good fight right by my side.
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