Lupus Family

Things will start to look a bit different around here, and I hope it will be a change for the better. When I started lupusfamily.com a few years ago, I wanted to do something that might make a difference, even if it was just a small one. It made a difference for me, at least. However, as time has gone by, I find that I have less to say about my wife’s lupus. It’s not that it’s not a problem anymore. It certainly is still a big problem, but we’ve gotten used to dealing with it.

I was thinking about just shutting the site down. It costs me about $100 bucks a year to keep it up, and there are many great services out there that offer free host services for bloggers. I still feel like the site could make a difference if it didn’t rely so much on my input, but was rather a community of people with common problems and questions.

family photosI called the site lupusfamily for a reason. Lupus has an effect on an entire family. I know that there are spouses out there that don’t understand their wife’s lupus. I know how difficult it is to talk to your children about why mommy is sick all the time. I can’t tell you how many times I’ve had to explain to coworkers how lupus works and why their friend who has lupus and doesn’t have any problems at all is not like the people I know that have lupus. I don’t mind answering their questions.

That’s what the site change is really all about I suppose. I would like to find some other husbands that deal with what I do every day. I would like to hear from my wife’s sisters about how they deal with lupus. They’ve been very supportive, but I know they had a hard time dealing with it at first. I would like to answer questions and get into some discussions, rather than just put out a post every week. I would like lupusfamily.com to really be a family.

Who knows? The site may crash with all the new features. I’ll do my best to moderate and modify the site as people start using it. Let’s just see what we can do together.

Waiting for Benlysta

I haven’t really had much to say lately. However, I was curious about how many people are having the same kind of conversations about the new medication, Benlysta.

My wife’s lupus hasn’t been in remission since I’ve known her. I’m not sure that it’s ever been in remission, but we’ve been talking about what that would be like. How would it be? Would she be able to reduce the amount of pain medication she takes? If your lupus is in remission, does that mean that you will no longer be light sensitive?

Wellness is not something we’ve had to deal with in the last ten years. How would that change our daily routine? Would it change the tempo of our lives? Probably not. My wife does whatever she wants to do, regardless of her health. Would it change how we relate to each other? Probably not. I bring her coffee in the morning because I love her, not because she has a hard time getting up.

Maybe it would just be a matter of not having to worry so much all the time. That would be nice.

Of course, there’s no guarantee that Benlysta will be effective, or even approved by the FDA, so this thinking may be all pie in the sky, whatever that means. But it can’t hurt to be hopeful, right?