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. Well, I think I’ve been sleeping through my wife’s illness for some time now. I haven’t read anything about lupus lately. I’m certainly not on top of what’s going on in lupus research. I’ve just gotten used to how things are. I stay on top of her medicine. I try and keep her from overtaxing herself. I try and reduce some of the daily stress and make sure she gets enough rest, but it’s all so automatic anymore.

I am going to start thinking about lupus again. The train is still out there and I’m not planning on moving to another house. I love my wife so damn much. She’s beautiful, smart, stubborn, and always full of surprises. She’s my best friend and a great mom, but she’s got this stupid illness that weighs on her daily, like ghostly shackles that come and go at their whim. Some days are okay. Some days suck. I’m a reasonably intelligent person. I should be able to figure this out. I should be able to make this all work better. I know there are other people out there doing the same thing. Why not share our ideas, our successes, our fabulous failures, and our daily struggles?

Now I just have to figure out how to do that every Thursday.

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.

I would especially like to thank the great people from our local lupus support group, who brought dinner for a week after she got out of the hospital. You hear about people doing things like that, but it’s a very humbling experience to be the recipient of such amazing generosity.

I expect that I will get back into the swing of writing soon, but it’s just been a lot of work keeping things going around here.

Thanks again, and have a Happy New Year.

Jeff

I’m lucky to have a position now that allows me to be somewhat flexible with sick days. I would say that 9 out of 10 sick days in the last couple of years have been to care for my wife. I usually just go to work sick.

I know one of the things I need to do to keep my sanity is to develop a strong network of support. However, I have a few roadblocks I have to get past before I can do this.

• I have no extended family. My parents, grandparents, aunts, uncles, and so on have passed away. I am an island.
• Up until recently, my wife did everything she could to hide her illness from friends, and to some extent, her family. The idea that lupus is a serious illness has not really settled in yet.
• All of our current friends also have small children, and it’s difficult for them to help sometimes.

The last few days have been particularly bad for me. I find myself becoming angrier and more resentful as time goes by, and yet there is no relief in sight.

I think what I need to do is start with the positive.

• I DO have a few people that I know I can count on for anything, and I can be thankful for them.
• Often, I don’t have any help, BECAUSE I DON’T ASK FOR IT. I shouldn’t feel ashamed to ask for help.
• Things will not always be like this.

Any ideas?