I’m feeling a lot better, so I’m going to try and get back on track with this website. My goal is to post every Thursday and then gradually reconfigure the site to include useful news and additional content. I started this site so that I could make some kind of difference, but I think I lost my steam when I realized how many sites there are out there that have really useful information about lupus. I felt that what I could write or report could be found just as easily somewhere else, but I now wonder if that’s true.

This site isn’t just about lupus. It’s about how lupus affects not only the person with lupus, but also all the people that care about them. For as much as I would like it to be different, my wife’s lupus impacts my family more than any other factor in our lives. It is the single most discussed topic. It has an effect on what we do each and every day. I’ve gotten so used to it, that I don’t think about it anymore.

I mean it. I don’t think I think about Jenny’s lupus like I did a few years ago. It’s like living in a house next to a train track. At first, the noise keeps you awake at night and drives you crazy, but after a while, you just sleep right through the noise. (more…)

Jenny was having a pretty rough morning. My son, who just turned five a few weeks ago, said this to her this morning on the way to preschool.

Don’t worry I’m working careful, hard, and I’m going to school really long and read my body books 145 pounds* so I can get my tools and fix your lupus and kidneys. I think you don’t have a strainer**. I wanna grow up and take care of my momma. I will build you a strainer.

That’s about all I can write about this, because I will look really stupid if I get teary-eyed sitting at my keyboard. He’s a really good boy.

*My son measures everything in pounds for some reason. I think it started with the phrase, “Me too”, which he would hear someone say and then he would respond, “Me twenty-four”, or something like that. He thought too was two and I think he also thought the numbers were a measure of how much you were in agreement with something. Then he learned about pounds as a measurement at school, and so now he measures effort, work, love, etc, in pounds. Time is about the only thing he doesn’t measure in pounds.

**My son is fascinated by how the body works. In one of his books, the kidney is described as a strainer, like the kind we use when we drain the spaghetti.