It’s not something I like to think about, but lupus is a very serious and potentially fatal illness. I was reading an article on the Associated Press this morning about how the woman who was the the inspiration for the classic Beatles song, “Lucy in the Sky with Diamonds”, died after a long battle with lupus. (I would link the article, but the AP has some pretty strict usage guidelines for their articles. I don’t really feel like paying for a link. You can search for it on your own.) Lucy Vodden had been a childhood friend of John Lennon’s son, Julian, who had come home from school one day with a drawing of “Lucy in the Sky with Diamonds.” I had always thought it stood for LSD. I think I like the song a bit better now.

What I don’t like is thinking about losing my wife to lupus. Mrs. Vodden spent the last five years of her life in a hospital in England. She was only 46. I know my wife doesn’t like to think about dying. We are both in a bit of denial about her disease. We keep assuming that at some point she will just get better, or some new medicine will work wonders. I don’t really know that it’s such a bad thing to think that. What’s the alternative? Does thinking about death make anything better? I don’t think so. Yes, we need to take lupus seriously, but life can’t just be about avoiding death. Everyone will eventually lose that battle.

I just don’t want her to lose that battle anytime soon.

This past weekend was one of those many times where I just felt totally useless. My wife seems to get every flu bug that the kids bring home, and so a few days after my daughter is just starting to get better, Jenny is down again with flu-like symptoms. This has been happening fairly often for the past six months or so.

The real problem with Jenny throwing up and not being able to keep anything down is her medicine. If she goes too long without pain medicine or even some of the lupus meds, she starts to get even worse.

I never know what to do for her, other than taking care of the kids and giving her stuff if she asks for it. My daughter is old enough to help out, and she does help a lot, but my son is only five, and gets very upset when his mommy isn’t able to get out of bed. He wants her to be better but he doesn’t know what to do. Well, I don’t either.

We had planned a party for Saturday evening, and I was going to cancel it, which is what I usually do in this circumstance, but I decided not to cancel. We talked about it, and she would have felt terrible, AND still been too sick to get out of bed. She stayed upstairs in bed and we went on without her. It wasn’t nearly as fun without her, but what are you going to do? It was a very short gathering, but still, that’s no fun.

On Sunday, I had to drive the kids to a soccer tournament that was three hours away, so my poor wife was alone on the couch with some apple juice and crackers for most of the day.

She does appear to be feeling a bit better now. I’m pretty exhausted. Hopefully, I won’t get sick as well.

One of the things that really bugs the crap out of me is when my wife does stuff that she KNOWS she’s not supposed to do. I don’t know if this is a common frustration with other people who are living with someone who has lupus, but I have a hunch that it is.

Heads up, loved ones with lupus! It really pisses off the people who love you and want you around for a long time, when you do dumb things to your body! If your doctor tells you not to lift heavy stuff because the discs in your back are permanently damaged, then don’t lift heavy stuff. If you are supposed to drink water so your kidneys are healthy, then drink some damn water instead of green tea lemonades from Starbucks, especially late at night when you already have insomnia!

I totally understand wanting to live your life without being hindered by your illness. We that love you wish that you could do so, but the truth is you cannot. That day in the sun at the beach means a week in bed, and carrying the vacuum upstairs means that you will spend the evening in even more pain than normal. Helping your perfectly healthy sister means that she gets a break and you’ll need pain patches for your back.

Your loved ones want you around as long as possible. Please help us take care of you.