My wife asks me a lot of questions. She usually asks me first thing in the morning why she is so sore or why she feels so terrible. During the day, she will ask me at least once why she feels so tired or why she has trouble staying awake, and early in the evening she will start asking why her back and her legs hurt so much. When we go to bed, she usually asks a sort of compilation question of sorts, wondering what is wrong with her.

I used to say, “Well, you’ve got lupus.” However, that is not what she wants to hear.

She knows she has lupus. She knows as well as I do how lupus works. She knows she has fibromyalgia. She knows she has rheumatoid arthritis. She knows.

I have a hard time with these questions. I know she knows, so the trick is to figure out at that moment, what does she really want? Sometimes, she really does want to know why something is hurting that doesn’t usually hurt. The problem is, of course, that I am not very good at figuring this stuff out.

More often than not, I make the mistake of just giving a straight answer. Your back hurts because you moved furniture, or you’re tired because you didn’t eat anything today other than an apple and some toast. Even worse, I usually add something like, “…even though I told you not to” or “in spite of the fact that I reminded you.” I know… I’m working on it.

Sometimes she just wants to know that things will get better, or that the pain is temporary. I can certainly tell her that, even though I don’t know if it’s true. I don’t know that it’s not true, so I feel like I’m still being truthful.

The real problem for me is that I want to be able to give her an answer, you know? I want to be able to explain what is really happening, because that is the kind of answer I would want. But my wife is not like me. I am all wires and numbers and she is made up almost entirely of emotions and intuition. My very factual answers do little to make her feel better. Instead of reminding her about how connective tissue disorders work, I sometimes think it would make her feel better if I said, “Well, it’s a full moon… that’s why.”

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…)