I will post more as the process develops.

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.

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.

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.

I hope that it’s approved and my wife gets a chance to try this.

If you get any additional information, please post it in the comments.

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.

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?

She’s tried all kinds of medications for reflux over the years. The last one that was prescribed for her was Zegrid, but that is no longer covered by insurance because it is available over the counter. I still don’t understand that logic. We pay a bit more for it now since it’s not covered, but it still seems to do a good job.

Things that seem to help in addition to the medication are:

• Avoiding carbonated beverages
• Reducing caffeine
• Avoiding late night snacks

My wife has a terrible time following any of these tips. Thank goodness for medication.

The first one was at The Lupus Magazine, and featured Jenny. Here’s the link if you want to check it out – From Figure Skater to Opera Singer – The story of an inspirational Soprano. I don’t feel like I’m in a good position to comment regarding the interview, but I think it was really nice of them to give Jenny the opportunity to talk about her experiences and what she hopes to accomplish.

The other interview was Larry King’s interview with Lady Gaga. If you had told me a year ago that I would talking about Lady Gaga at all right now, I wouldn’t have believed you. I really didn’t know anything about her back then, other than I was too old and square to be interested in some new pop icon. This is an interesting and intelligent young woman. I’ve thought so ever since I saw her interview with Barbara Walters, and I enjoyed this interview with Larry King as well. Will her comments have any impact on lupus awareness? I don’t know. Maybe. We shouldn’t underestimate the power of pop culture. Lady Gaga spoke about lupus as an illness that should be taken very seriously. I don’t see how that can be a bad thing.

I’ve heard some of the tracks of the songs she’s been working on and I think it’s a great project.