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.

There is so much about this topic that disturbs me, I’m not sure where to begin. Well, let’s start with the obvious one, that lupus is still considered by many to be a joke disease. Why? Well, I think people joke about things that don’t make sense to them and Lupus certainly doesn’t make much sense. Some people we know who have lupus have such a mild case that they appear to others as not being sick at all. On the other hand, someone we knew just lost their battle with lupus. I don’t know how to fix society’s perception. American society appears to be much more interested in being entertained than being educated.

When a society makes political decisions based on entertainers masquerading as journalists, the eventual conflict for ratings and viewership can only result in a political system forced to make decisions based on the amusement of the masses and the economy of YouTube viewership.

Every day that a person turns on the radio and listens to someone like Rush Limbaugh tell them how to be a real American or feels like they are politically involved because they watch The Daily Show, this economy of stupidity will continue to perpetuate itself until this country is reduced into neatly identified marketing groups of lemmings running blindly toward their edu-taining talking head of choice.

I wish I had some easy solution, but sanity is not very entertaining.

In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.

Click on the link “Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act,” enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please ask your family, friends and coworkers to call on your behalf as well.

The Lupus Foundation of America has quite a few suggestions on what you can do to help spread awareness, including sending an informative eCard to friends and folks that may not know about lupus.

They also have a number of ads that can be placed in newpapers or magazines, or online like the one below.

Even if you don’t have a blog or have the extra cash lying around to place ads in newspapers and magazines, you can still help spread the word about lupus by just mentioning it to someone at work, or while you’re waiting in line at the store. Sure, you might think that they don’t care or aren’t interested, but you never know. Give people a chance. They may surprise you.

For my own part, I’m going to send out some of those eCards, print out a couple of informational fliers for my office, and make sure that I have joined The Lupus Foundation of America’s cause on FaceBook.

March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

I do encourage everyone to choose one or more of the recommended activities and participate this coming Tuesday.

Here’s a few easy ways to let everyone know that you support Lupus research and the Lupus Foundation of America, using a couple of the social networking tools we all seem to spend so much time using.

Facebook
There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.

“YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa”

Twitter
If you have a Twitter account and are joining us for Advocacy Day, you can “tweet” your Advocacy Day experience. You might want to post updates such as “Heading to Capitol Hill now” or “Meeting with Senator Young.”

If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested “tweets.”

“Support LFA’s Advocacy Day tomorrow. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa”

“Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa”

I recently cancelled my Twitter account, but perhaps I will activate a new account that is just centered around this blog. More on my to do list.

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.

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.

Wick Davis has helped get us a category over at the LFA Forums, Caregivers of People Living with Lupus. Make sure you check it out. It helps to talk, or type, or whatever.

I’m really happy to have so many new visitors. I cannot tell you how close I was to shutting this place down last month. Thanks for all your support.