Category — Q & A

How do you describe Lupus to someone?

I was diagnosed with Lupus last summer. I was engaged a the time, and would have hoped my fiancee (now husband), would have researched it a little, but I really don’t think he understands what I deal with on a daily basis. How can I get him to understand that there are days when I can barely drag myself out of bed?

Answer
Sorry to hear you have Lupus , so does my daughter. She got it when she was a teen and she’s 31 now. I describe it by saying the body is turning on it’s self. That’s what is happening. It’s a chronic inflammatory disease. Your immune system loses the ability to tell the difference between foreign substances (antigens) and it’s own tissues and cells. Do you have DISCOID or Systemic? Contact your local Lupus Foundation for free information. Also Internet http://www.lupus.org I wish you all the luck and keep your chin up and be a fighter. My prayers are with you. You can contact me if you like.

I have Lupus. I’m having a flare up so my hair is really thinning.
I look terrible in hats, what else can I do? What about hair extentions?

Answer
I know exactly how you feel. I have thick hair so its not as noticeable but I have found that if you don’t have bald spots yet then brush over and spray with a good alcohol free hairspray. Or you can use a real pretty scarf to wrap your hair. The thing about hair extensions is they are expensive and they don’t last forever. Our hair ( Lupus patients) go’s when it pleases so if we spent a gob of money on them and all of a sudden we are missing a clump we are really going to be upset then. But you should do what you feel is the Best. If your not comfortable and you want them ,you do what you want. This is all on how you feel. Good Luck