Skip to main content

The cost of being sick

You'll have to forgive me for not blogging tonight. If I get a moment, I'll try to throw up some more pictures. This evening I'm working on a little snag that has cropped up in regard to the drug trial. It seems United Airlines and the Transportation Security Administration representatives at Dulles Airport are requiring our patients coming and going from Puerto Rico (in other words most of them) to have a U.S. passport.

According to my sources at the State Department and the Department of Homeland Security, they shouldn't need to have a passport. After all, Puerto Rico is a U.S. territory and Puerto Ricans are American citizens. But, it seems the counter staff and the guys standing at security missed that part in American history class. So, I'm in the process of writing to both of these entities (after many phone calls today trying to figure out how to file a complaint). I'm sure we'll get it taken care of. But, the problem is occupying my time right now.

Passports aren't cheap these days, especially for people who live in Puerto Rico on social security. We can't afford to have people drop out of the trial over a passport!

In the meantime, if you want a good read, go check out Leroy's cancer blog again. Just in case you really don't understand how urgent our country's health care crisis truly is, go read the hundreds of comments on Leroy's blog from the people who have lost careers, homes and their life savings just because they got sick. And, if you think this won't be you because you've got insurance - think again!

Check it out at: http://www.npr.org/blogs/mycancer/

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h