Monthly Archives: February 2009

Rare Disease Day

I’m home woo hoo.

Today is Rare Disease Day.

Info:

The last day of February has been designated as worldwide “Rare Disease Day” to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.

For more information about Rare Disease Day activities in the U.S., go to NORD’s website (http://www.rarediseases.org). For information about the global observance, go to www.rarediseaseday.org.

Source: National Organization for Rare Disorders (NORD)

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Also see the You Tube Channel and Twitter feed. #rare is the Twitter hashtag that folks are using for tweets regarding Rare Disease Day.

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Last Day of Tests

😀

I think Dr Raj is going to go over treatment plans with me today. (I get topped off with a bag of saline tomorrow morning and get to go home. I miss our dogs and cats.)

The only type of Ehlers Danlos syndrome he said they’ve encountered with POTS is the type 3 hypermobility type. That’s the only type that doesn’t currently have a gene test for diagnosis yet. It’s unknown why they go together.

I drink about 2-3 liters of water per day & asked how to tell if I’ve had too much water. I was told not to worry about it; it’s unlikely I’d drink so much to cause water intoxication.

Where I’ve Been For The Past Week

I’ve been at the Autonomic Dysfunction Clinic at Vanderbilt in Nashville for just over a week now. Last fall I was here for about 3 days, I think, when I was diagnosed with POTS. I’m really lucky because I live in the Nashville area so I don’t have to travel far to get here. In fact, I used to work at Vanderbilt so it used to be my commute. 🙂

At the moment I am in bed and waiting for a druug trial to begin. They have to wait a while after I eat breakfast. I am in about 5 research studies. (I don’t feel like looking at the paperwork and my memory isn’t too hot right now.) I’ve done about 4 other trials so far & have another tomorrow. I take pill X (I’m given a list of them when I go over the paperwork but I don’t know what it is when I take it) and then I sit for a while. Because my problem (POTS) is more evident when I am vertical, periodic BP/pulse measurements are taken while I am sitting and when I am standing up. I have an I.V. catheter and blud draws at intervals. I also write down what I am feeling during the “stand up” times. Takes about 7 hours, which includes the “getting up early to eat breakfast then waiting for it to start” time haha.

I think I’ve watched about 47 episodes of NCIS and various permutations of Law & Order while I have been here. 🙂

Other tests I’ve had are a blud volume test, sweat test, and a test for a type of vein gas. Yeah the results are a little bit off.

When I am finished on Friday they will go over my results and give me a treatment plan. Then my neighbor is picking me up. We will go immediately to coffee. I’m on a special diet here. It isn’t bad – I’m never about to complain about having food to eat or a bed to sleep in. But do I miss coffee and chocolate.

There is a filter on this computer, hence the creative spelling.

School House Rock – Them Not-So-Dry Bones

Pallimed: Arts & Humanities: You’re Going to Die

Pallimed: Arts & Humanities: You're Going to Die