I don’t know how many of you deal with this, but I find it interesting how my wife and I maintain this delicate balance of dealing with her illness and making believe that it isn’t real. Obviously, we have to deal with lupus every day in one way or another. There’s the health insurance that’s not covering what it used to cover, and the financial problems that go along with that. There are limits to what my wife can do during the day, even though she often chooses to ignore those limits. It all catches up to her eventually.

But I understand why she might want to ignore those limits. I haven’t mentioned spoon theory in a long time, mostly because I know my wife doesn’t want to hear that she can’t do something. Who want’s to be reminded of their limitations?

I do find it difficult to walk this tightrope. I sometimes wonder if my taking care of all the messy details is helping or just enabling those moments of make-believe? We all need moments of make-believe. Maybe those of you with chronic illnesses need them more than most.

I admit the whole BuddyPress experiment was a failure. I checked this evening and there were thousands of spam users and splogs. It will take a little time, but I installed a plugin to delete all of it. I think it’s time to go back to square one.

This is a blog about my life with lupus, specifically my life with my wife, Jennifer, who has lupus. Jenny’s lupus may often limit her, but it doesn’t define her. While lupus may affect our lifestyle, we don’t let it color the canvas of our family portrait. It’s just something we deal with, like taxes or taking out the garbage.

I don’t want to appear that I’m making light of a difficult situation, but rather I would like to explain how we manage to deal with it. We deal with it as a family.

I apologize to those who were trying to use the BuddyPress system in the way I intended and I’m sorry some of the genuine discussions were lost. I’m sorry I let this go for so long, but it’s been a very difficult year for me, and this blog wasn’t a priority. It will take a little time, but I will get things back in order and try to make this a worthwhile resource once again.

On a more positive note, Jenny has started receiving Benlysta, and so far things are going well. We are very hopeful for some positive results from this new medication.

Now that Benlysta has been approved, we are in a holding pattern, waiting for doctors and insurance to come together on a treatment plan.

I am also in a holding pattern in terms of this site. I just don’t have the time to dedicate to maintaining this, but I hate to just drop it and let it dissappear into internet history. I’m tired of paying for it. I’m just tired in general.

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.

I 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.