Jennifer, this is a tough one. My kids were 6 and 2 when I got sick and I wasn't sure how to explain it to them. If course, my 6yr old understood it way better than my 2yr old. Now they are 11 and 7 and it has been quite a journey. I went from overwhelming mommy guilt to a place where we are pretty well adjusted to my illness now. My 11 yr old understands everything he needs to know about
my lupus and my 7 year old now understands that lupus doesn't ever go away and that there are times I feel pretty decent and times I feel really sick.
I found one really great resource when I was looking for a book for my kids. Your son is the perfect age for this book. It's called "Are You Tired Again...? I understand." If you do an internet search of the title you'll find places to order it. I know for sure you can go to lupus.org and order it from their store. It's a neat interactive book for parents to go through with their kids.
I hope this helps. One of the hardest things about
this disease is being a mom of young kids while dealing with this ilness. Believe me, my kids and I (and my husband) have run the whole spectrum of emotions during the 5 years I've been sick.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears
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