Not So Invisible Anymore?

My daughter Christine has, what is sometimes called, an invisible disease. Though she looks teriffic most of the time, she has suffered, for over a dozen years, with the debilitating and painful symptoms of Lupus. It's become an inside family joke when people commented almost incredulously- "but yo

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Breaking the Ice on Sex, Intimacy & Chronic Illness

I was diagnosed with SLE in my teens, long before I'd become sexually active. When sex became a part of my identity, instead of being a glorious whirlwind of sloppy kisses and knock-your-socks off orgasms, I viewed it as yet another physical activity, I had to worry about! My bones popped so often,

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Everything I thought I knew about going to the hospital. ( also known as do what you gotta do)

Unfortunately when you have a child with a chronic illness, you come to think of yourself as some sort of expert on the subject. It's not exactly a specialty that you dreamt of having, but one nonetheless that you take ownership of with some sense of pride. My daughter Christine has had Lupus f

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Happy New Year – 1 Word – 2006

I love the thought of New Year's Day. It is a great chance to renew the spirit, set goals, and start fresh. Whatever you have experienced in the past year this is a chance to have a new outlook. What a great feeling! For those of you who were members of this newsletter last year, you might remember

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Being a Teenager in a Chronic Illness World

Living with a chronic disease, especially when you're a teenager is never easy. Having to create a balancing act with school, homework, friends, your other activities and with things you have to do to stay well- like taking naps, and getting to doctors appointments, can be extremely difficult. It'

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When the Invisible Becomes Visible – thoughts on becoming pregnant

Recently, I learned my husband and I were pregnant with our first child. We were, and are, ecstatic! We have been looking forward to having children for years, and we had been actively trying to get pregnant for months. I suspected I was pregnant in February and excitedly did 3 home pregnancy test

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