Monthly Archives: February 2009

March 3, 2009: LFA’s Advocacy Day

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From On the Road to a Cure:

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.

Sjögren’s Syndrome

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Sjögren’s syndrome, pronounced (SHOW-grins), is an autoimmune disease that features inflammation of the glands that produce tears, which leads to dryness in the eyes, and inflammation of the glands that produce the saliva in the mouth, which leads to dryness in the mouth and lips. It is one of the more common autoimmune disorders and is thought to affect over four million individuals in the United States alone.

You can learn more about Sjögren’s syndrome by visiting The Sjögren’s Syndrome Foundation, which was founded in 1983 and “provides patients practical information and coping strategies that minimize the effects of Sjögren’s syndrome.” The foundation’s website has a great deal of information, even though it doesn’t appear to have been updated recently. I’m not sure if it is even still an active organization, but I will send them an email and see if anyone is still home. Nonetheless, the site has a good amount of information.

I would recommend that you first visit the Sjögren’s information page at the Lupus Foundation of America for more information.

My wife has just recently started taking Evoxac, which is a medication for Sjogrens. It’s pretty early to tell if it’s making any difference, but we have had an odd episode where she woke up coughing from too much saliva, which was a little scary.

The current poll is set to end on March 3, so if you haven’t participated, there is still time.

My Son the Doctor

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Jenny was having a pretty rough morning. My son, who just turned five a few weeks ago, said this to her this morning on the way to preschool.

Don’t worry I’m working careful, hard, and I’m going to school really long and read my body books 145 pounds* so I can get my tools and fix your lupus and kidneys. I think you don’t have a strainer**. I wanna grow up and take care of my momma. I will build you a strainer.

That’s about all I can write about this, because I will look really stupid if I get teary-eyed sitting at my keyboard. He’s a really good boy.

*My son measures everything in pounds for some reason. I think it started with the phrase, “Me too”, which he would hear someone say and then he would respond, “Me twenty-four”, or something like that. He thought too was two and I think he also thought the numbers were a measure of how much you were in agreement with something. Then he learned about pounds as a measurement at school, and so now he measures effort, work, love, etc, in pounds. Time is about the only thing he doesn’t measure in pounds.

**My son is fascinated by how the body works. In one of his books, the kidney is described as a strainer, like the kind we use when we drain the spaghetti.

Raynaud’s Phenomenon

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Raynaud’s Phenomenon, pronounced (ray-NOSE), is a disorder where spasms in your blood vessels can restrict blood flow to your extremities, usually your hands. This manifests itself with discoloration of the hands and fingers, with severe cases causing a bluing of the fingertips. This lack of blood flow makes your extremities feel painfully cold.

Raynaud’s can be an early indicator of a number of connective tissue illnesses, including lupus. My wife has Raynaud’s and so does another member of her family. Strangely enough, I think I have it as well, to a lesser degree.

Those with Raynaud’s Phenomenon should avoid smoking, cold temperatures, intense vibrations, and emotional stress, so don’t argue with someone on a Winter train ride in France.

In our house, we make sure we have warm socks, and if it gets really bad, we just soak our hands or feet in some warm water. We also bought one of those parafin wax skin treatment machines. My wife likes it a lot, and she says it does help, but it’s a bit of a pain to use it.