Diagnosed at 36

What do you want others to know about lupus?

I want others to learn more about lupus. See it for what it really is. See it for the monster that it is. Taking people's lives away a little at a time. Consuming them with pain, rashes, sores, depression , and so much more loss. See past the smiles we fake each day to survive a world with no understanding. To see us and know us and hear us.

Why is lupus a cruel mystery to you?

The months before I was told I had lupus.. my husband was almost killed in an accident,he was having memory problems, my children (Iam homeschool) couldn't understand why daddy was not himself. Then I start having issue. The day I was told I had lupus was on my husband's birthday. My whole world seemed to fall apart with just 3 words.."You have Lupus." Later I was told I not only had lupus but I have MCTD. The doctors believe that it came from the stress of the accident. Now I am fully retired and disabled along with my husband. Why is lupus a cruel mystery to me? It's more of a cruel joke sometimes. But I will say this.. It has taught me to value life more. It has taught me to step out of the "me" world and into the "life" world.

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