Fluorescent Lights Out

I was going to try and make this particular poll go a bit longer, but I think we’ve all heard enough about fluorescent lights for now. 18 out of 19 people who responded have some type of adverse reaction to fluorescent. They are obviously not good for people who have lupus. I think we knew that already. About the only thing I have learned from this so far is how to spell fluorescent.

We don’t have any fluorescent light in the house, with the exception of the kitchen, which has these four rows of those banks of bulbs behind plastic translucent sheets. One of the things that I would like to do, once there’s money to do so, is to tear those out and install some incandescent down lighting.

On another note, I wanted to say thanks for those folks who have supported the site by using the amazon links (you don’t have to purchase the stuff shown as long as you start your search through the link) and those of you who check out some of the cycling advertisements. It’s pennies here and there but they do add up. Thanks!

Fluorescent Light Bulbs and Lupus

I noticed something interesting in today’s enewsletter from the Lupus Foundation of America.

Fluorescent Light Bulbs and People with Lupus

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.

This has been one of those things that just dumbfound people when they see it. Jenny is super sensitive to fluorescent light. She will usually turn red and rashy within about ten minutes of stepping in a Target.

Oddly enough, the most dramatic example of this reaction happens in the doctor’s office. Those small brightly lit rooms make my wife butterfly almost immediately. I remember that some of the doctors were amazed at how quickly it happens. One doctor actually turned the lights out and then went to get a colleague in order to show him how quickly it happens.

I’ve seen articles about how we will eventually move almost entirely to fluorescent because of the impact on the environment. I wonder how that will affect my wife. Not only does she butterfly but she also tends to get headaches from the fluorescent lights. Maybe the technology will get better and the spectrum of light will be a bit more friendly for light-sensitive lupus patients.

If you have had any experience with this, I do encourage you to share your comments here and email
the folks at the LFA at advocacy@lupus.org.

Skin Reactions

Recently, my wife has developed dry skin on her hands along with small round lesions that are extremely painful. It seems to be related to sun exposure and stress, but really we have no clue what’s causing it. This is probably the third time in the last year that this has happened but this is certainly the most severe occurrence.

It’s very frustrating when your specialist is two hundred miles away and doesn’t always respond to phone calls.

It looks like a chemical burn, but she hasn’t handled any chemicals.

Still Here

I’ve had a hard time writing lately. I’m not sure why, because there’s a lot to write about. I just can’t seem to get much of it together. I know I’m tired, but I’m always tired, so I don’t see that making a difference.

After writing all those suggestions last month about being prepared to go to the doctor or emergency room, I was kicking myself yesterday for not having information about all of Jenny’s doctors. She had just had an MRI and was pretty sedated, and they were asking about where to send the information. I should have that information with me in my wallet, but I don’t. I’m going to try and figure out some way to do that without making my wallet look like a Big Mac. I’ll let you know what I come up with.

Jenny was recently sent some sun resistant clothes to try, and she likes them a lot so far. I’ll let you know more soon. I’m really glad summer is on its way out. The sun makes Jenny’s lupus flare like crazy.

I promise to write something useful soon.