How to use this Page

Today is one of those days that reminds me, "Hey, stupid! You have lupus!" 

I'm in a fog, I'm exhausted, and I feel bad. What did I do? I did a little house cleaning yesterday. Bad idea.

The way I feel, though, has reminded me of the limitations I'm have with promoting a book. "Are you having any booksignings?" "Do you want to come to our school?" These are questions I wish I could say a resounding YES! to, but the truth is I can't do too much on a regular basis. So I haven't been as arduous about pursuing signings because there is just so little energy to go around. After last week's appearance at the NAEYC convention, I was exhausted. 

So today when I started beating myself up mentally for not wanting to call people, visit bookstores, send out mail, or update my web site, I remembered Laura Hillenbrand, author of Seabiscuit. Laura suffers from CFS--chronic fatigue syndrome. I found this quote from 2001:

Right now my exhaustion is bad enough so I'm 100% housebound. 
I've only been out of the house three times since my book came out two months ago. 

Laura didn't do the book tour thing--she just couldn't. She fought her illness just to be able to finish her book--public appearances just weren't on the horizon. So I'll have to be happy for the things I can do. I'm blessed to have been able to get my book published and see it make children, their parents, and teachers smile.

Daniel J. Wallace, M.D., is a Clinical Professor of Medicine at the David Gefen School of Medicine at UCLA based at Cedars-Sinai Medical Center in Los Angeles. In The Lupus Book: A Guide for Patients and Their Families 3rd ed. Wallace provides an accessible guide to what can be a very confusing disease, providing up-to-date information and advice to living a happier life with Lupus. In the excerpt below Wallace looks at how marriages suffer when one spouse has been diagnosed with Lupus.

Darleen and George were happily married for 5 years when Darleen was diagnosed with SLE. George had grown up with learning difficulties and had had limited educational opportunities. Darleen tried to tell him what lupus was, but he didn’t seem to pay attention. When Darleen was put on steroids and gained 20 pounds, George made fun of her appearance. One night her joints were so swollen that she couldn’t even get into the car to go to George’s friends’ house for dinner. George said that her joints looked OK to him and started yelling at her. Over the next few months, George started drinking heavily and lost interest in sex. Darleen was scared to talk to him, and one day he just didn’t come home. (more…)

Share This