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.

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.

• 37% indicated that they sometimes have noticeable symptoms.
• 32% of those polled said that nobody would guess that they have an illness.
• 24% voted that they hide their symptoms very well.
• 8% of those who responded have obvious symptoms.

Sometimes I wonder if lupus would be treated differently if it had more visible symptoms?

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.

I was just taking a look at the beta from Google, Google Health, which is an application to track your health information in a central location.

According to the FAQ,

Google Health offers a single location to consolidate and store your medical records and personal health information. Saving medical information in one secure location helps you and your doctors have accurate and up-to-date information about your health when you need it the most. This in turn means that your medical treatments may be safer and more effective. You can also use Google Health to access a host of online services and tools, from a variety of third-party companies, that can help you better manage your care.

I have some mixed feelings about this application. I do think that it would be convenient to have all of our medical records in a single location. Google won me over a couple of years ago, and I use three or four of their applications every day. I suppose I have some concern over privacy issues, but I imagine that the online security will be better than our pharmacy. My only concern would be the use of the host of online services and tools.

There’s a whole lot of conflicting information out here on the internet, and I worry about people using these online services to do a bit too much self-diagnosis.

What do you guys think? Do you use any of the online medical applications? Do you tend to self-diagnose?

The strip posted today, It’s Never Lupus, really annoyed me. One of the main characters, Brent, was recently injured in a company paintball game, when his fiancee, Jade, shot him in the nipple. Normally, I would consider this worth a chuckle; however, when he is taken to the emergency room, his doctor says,

At first we thought it was lupus.

Yeah, now that’s funny.

I don’t blame Kurtz in any way. I still think he’s hilarious, and I will certainly continue to read PVP just like I continue to watch the television program that started this running gag. The writers and producers of House placed lupus into pop culture, not as a life threatening illness that screws with my family’s life each day, but rather as a funny diagnosis that’s never quite accurate. It’s never lupus, right? It’s always some real disease. A disease that everyone understands. A disease that plays by the rules.

Well, sometimes it is lupus, and it really sucks.