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. 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.
I like this, dude… going from automatic to manual bodes well for you – and for Jenny.
Praying for you guys…
mark
aka pastor guy
Glad to see you back at it! I can relate to being on auto mode about lupus. Maybe it is the easiest way of dealing with having a wife (or other loved one) who is, as you say, shackled with this disease. I like that you blog is from the Husband’s POV ~ the only one I have found. It is nice to know that you are not alone; none of my friends are in the same boat, so they don’t truly understand. I looks forward to seeing what you come up with going forward.
Jay
Thanks for the encouragement! I’ve got a three day weekend to make a few changes to the site and see if I can make the wordpress theme work a little better. Maybe I can do a bit of reading, and update my blogroll.
I found your site a month or so ago and it has been enlightening. My wife was officially diagnosed a little over a year ago with Lupus and it has been an education. I married my high school sweetheart a little over 12 years ago and we have been through everything together. This is the hardest thing we have dwelt with and has been a very slow process. Keep up the good work with your blog, it has been a GREAT reassurance to read about others that are in similar shoes. I look forward to what’s next and will try to share my comments and experiences as well. Again, THANK YOU!
-Terry
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