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.

We don’t have any fluorescent light in the house, with the exception of the kitchen, which has these four rows of those banks of bulbs behind plastic translucent sheets. One of the things that I would like to do, once there’s money to do so, is to tear those out and install some incandescent down lighting.

On another note, I wanted to say thanks for those folks who have supported the site by using the amazon links (you don’t have to purchase the stuff shown as long as you start your search through the link) and those of you who check out some of the cycling advertisements. It’s pennies here and there but they do add up. Thanks!

1. Always Keep your keys and purse on the same hook or in the same place.
2. Make lists, prioritize, and complete them if you can while you are feeling better.
3. Try to take on and finish important things during your best times without overdoing it by scheduling too much.

The blog, Fibromyalgia and Chronic Fatigue Tips, is a part of selfhelpmagazine.com and is written by Robin August, PhD.

The poll is doing quite well. I certainly have never gotten that many contributions to a regular post. I’m going to give it another week and then discuss the results, so if you haven’t voted yet, you should get on it.

After writing all those suggestions last month about being prepared to go to the doctor or emergency room, I was kicking myself yesterday for not having information about all of Jenny’s doctors. She had just had an MRI and was pretty sedated, and they were asking about where to send the information. I should have that information with me in my wallet, but I don’t. I’m going to try and figure out some way to do that without making my wallet look like a Big Mac. I’ll let you know what I come up with.

Jenny was recently sent some sun resistant clothes to try, and she likes them a lot so far. I’ll let you know more soon. I’m really glad summer is on its way out. The sun makes Jenny’s lupus flare like crazy.

I promise to write something useful soon.

There are times when I just can’t do everything. My wife is still having some flu symptoms and is having a hard time. I had to take a day off of work at a very bad time for me. This is really the busiest time of the year for me, and I don’t mean this time in general, I mean last week and this coming week specifically is the most stressful and busiest time of the year for me.

We will get through it and everything will be fine; however, I have put some posts on hold until I can have some time to sit down and write again.

I’ve used WordPress from the very start. It’s a great tool when you are self-hosting your blog, which just means that I pay a host for my domain, bandwidth, email, etc. The ads that you folks click on occasionally help pay for all that.

If you are interested in setting up your own blog without the costs, I do recommend WordPress.com, the .org is for self-hosted sites and the .com is for the sites that WordPress hosts for free.

I don’t usually participate in things like this, but I wanted to show some support and it’s a good question.

I started this blog because I thought it would be a good way for my wife and myself to bring together and educate some of the people in our lives who have had trouble accepting lupus as a real illness. This is why it’s lupusfamily.com; however, my wife never really felt comfortable participating in the site.

So this question about why I blog relates directly to why I continued to maintain the site and changed the name to My Wife Has Lupus. (You will soon be able to reach the site through mywifehaslupus.com as well.)

The 10 reasons why I blog:

1. Maintaining this blog allows me a feeling of active participation in a situation where I commonly feel totally helpless. This is the primary reason I blog here. I have other blogs that serve my love of writing. I don’t love writing this blog. I just hate feeling helpless.
2. I want to provide support for others who have lupus or know someone with lupus.
3. This blog reminds me to stay on top on lupus news and research, which helps my wife stay proactive in her treatments.
4. Through this blog, I am constantly reminded that there are many families who have to deal with a lot more than we do. So it helps me maintain a certain amount of perspective.
5. I blog to help people get some answers about lupus, either for themselves or their loved ones. If the answers can be found here, that’s great; otherwise, I try and provide links to better resources like the LFA.
6. I want to provide a voice to those individuals who do not have lupus, but whose lives are changed by it.
7. Did I mention that I hate feeling helpless?
8. I blog to add my voice to the chorus. There is power in numbers. Lupus should not be an invisible illness.
9. I want to channel a destructive force in my life into a creative one.
10. I blog because I hope to make a difference.

I’m tagging myself! It’s a good question and I blog for different reasons on my other sites.

Gameguy thinks…

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