Monthly Archives: October 2008

Fluorescent Light Bulbs and Lupus

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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.

New Fibromyalgia Blog

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I came across a relatively new blog that gives tips for dealing with fibromyalgia and chronic fatigue. Here’s a bit from a post about preventing brain or fibro fog:

  1. Always Keep your keys and purse on the same hook or in the same place.
  2. Make lists, prioritize, and complete them if you can while you are feeling better.
  3. Try to take on and finish important things during your best times without overdoing it by scheduling too much.

The blog, Fibromyalgia and Chronic Fatigue Tips, is a part of selfhelpmagazine.com and is written by Robin August, PhD.

The poll is doing quite well. I certainly have never gotten that many contributions to a regular post. I’m going to give it another week and then discuss the results, so if you haven’t voted yet, you should get on it.

Invisible Illnesses

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I’ve installed a new poll widget on the sidebar, because I thought it would be nice way for people to chime in on subjects without having to make a comment. I really like getting comments, but I know that I don’t always feel like leaving them. I’m pretty good about participating in a simple poll, as long as I don’t have to fill anything out.

For the first poll, I wanted to get some feedback on a subject that comes up often in Lupus discussion groups, and is something I’ve dealt with recently. Lupus and the pain-in-the-butt suite of illnesses, syndromes, and phenomenons that usually go along with lupus are not always easily seen. Most of the problems that my wife has are fairly invisible. This latest problem with her hands was certainly an exception, but usually, other than skin reactions related to her photo-sensitivity, Jenny doesn’t usually look sick.

The only problem with not looking sick is that many people who are not familiar with lupus or other potentially invisible illnesses will often have trouble taking the illness seriously.

I’m just curious how many of you out there with lupus, or whose loved one has lupus, have symptoms related to your lupus that are easily visible and how many have a somewhat invisible illness.

You are still free to make comments as well. I do appreciate them. Also, if you do happen to see an advertisement that interests you, please click it and check it out. It doesn’t cost you anything to do so, and the few pennies I receive do add up and help a lot when my web hosting bills come due.

Skin Reactions

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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.