Recently, there was a comment left that I thought deserved a post of its own.

My wife has Lupus as well, she has had it since she was a child. So far it hasn’t been to bad, but since we got married 2 years ago, she has been having a sever pain in her side on the back above her kidney. So far no tests have shown anything, she is constantly in pain and on high levels of pain medicine. I am wondering if you could offer some advice to me on how you manage a job and caring for a sick spouse, if it is even an issue for you? My wife often asks me to come home early or take days off when she wakes up feeling unwell. My employers have been understanding, but they are starting to question how much time I am taking off. – Dave

I have had similar experiences at work. They are very understanding and I don’t have to do it too often, but they do question the time I take off.

I think that it’s good advice to be up front with your work about your wife’s illness. That’s made the difference for me. It can be confusing if people don’t understand that lupus isn’t necessarily an illness that affects someone the same way each day. There are good days and bad days. Seriously, most of the time Jenny doesn’t need help like that. She’s in a lot of pain, but she has a career and she makes it through her day as best she can, trying to stay ahead of the pain with medication. I don’t usually need to miss work. I choose to drive down with her to UCLA because I know that’s a rough drive for her and I like to hear what her rheumatologist has to say. She’s a great doctor and really goes out of her way for Jenny, so I try and schedule my vacation days around those visits.

When I do miss work, it’s usually because she’s so bad that she can’t get out of bed or I have to take her to the hospital. Unfortunately, that happens more often than we would like, but we do the best we can. Jenny’s sisters help out a lot, and we have some great friends who help as well.

You also need to keep your wife up to date on situations at work. I really suck at this. I just usually don’t want to talk about work when I get home, but if I don’t then my wife has no way of knowing why I’m stressed out or if I’m having to deal with situations caused by me taking time off.

Here’s my advice for dealing with the issue of time away from work:

• Make your boss aware of the situation and always try and make contact with them in times of trouble. That way, they will be more likely to be sympathetic to your situation.
• Get help from friends and family and make sure you have someone to call in case you need some emergency help.
• Make sure that you and your wife keep your lines of communication open so that you will know when you really need to stay home, and so that your wife knows that it isn’t always an easy situation to take time off from work.

Does anyone else have any suggestions?

It really bothers me when doctors try and move your appointments around. The last time I drove my wife down to UCLA, which is about a four-hour drive one-way, her rheumatologist scheduled some scans that she wanted done there at UCLA. That was fine with us, and we took the appointment time they gave us and we were off.

I scheduled another day off of work so I could drive her down there, and she made sure her schedule would work and that there would be someone to watch the kids.

Then two weeks before the date, the doctor assigned to doing the scan changes the appointment, which the rheumatologist says was extremely important, to a date in mid-August. Oh, yeah… that can wait four months. Important? Nah. Who cares? She’s not my patient.

This stuff pisses me off to no end.

We are fighting to keep the same date we had, and the rheumatologist is doing what she can for us, but it’s really frustrating.