Tags: 2012

Second Major Trip, off to a bad start....

Well, I'm on board a flight from DFW to SAN for my second major flight since my Narcolepsy/Cataplexy Diagnosis....and its kind of off to a bad start.

While...the flights have been largely uneventful. There have been other issues.

In the rush for the last few steps that I need to do before I leave home, I did remember the usual like unplug hot water pot. Water plant, refill humidifier....though not the air washers. And, this time I did remember to set vacation hold on my thermostat. So first test of the days hold feature of my thermostat, meaning it shouldn't be freezing or a sauna (depending on what the weather is like when I'm away) when I get home.

However, I while in the air from MHK to DFW, it dawned on me that I didn't pack my pillow alarm. Will have to see what I can improvise when I get to hotel. And just now it occurs to me that I didn't pack my rollerpen, for writing in case my fountain pen (which I did pack) fails to make it...or runs out early. Though I also forgot to pack my (good) notebook, so I might not do much writing at all.

The other thing is that I wish I had gone to the chiropractor before this trip....my dizziness has been awful sometimes now. And, my back had started killing me on Friday....is now making air travel that much more painful. Might also cut into my activities at the conference.

Meanwhile, I'm trying to figure out what kind sleep schedule I'm going to have during this conference....

But first, time for a $10 roast beef sandwich.....

Rare Disease Day 2012

Link: http://rarediseaseday.us/

Somehow slipped my mind that this year would be a leap year.

Guess that makes it appropriate that Rare Disease Day will be on February 29th this year.

About Rare Disease Day

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.

Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.

This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org.

What is a Rare Disease?

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2012, our focus is solidarity.