God, Grant me sleep

I’m tired – so tired! It’s almost midnight. I went to church tonight, got home and had 27 e-mails and seven voice mails just since leaving work. Groan – I’ve got a long list of things that need to be done both for work and for HPS, and then these little things come up that need immediate attention and I’m always struggling to keep up.

In addition to Hermansky-Pudlak Syndrome, I have sleep apnea, but I’m terrible about using my C-PAP machine. Not only is it hard to sleep with air blowing in your face and making your throat sore, but the mask rubs against my skin, and thanks to the HPS, makes bruises and sores on my face if I use it all the time. Right now I’ve two sores on my face, and I feel like I’m walking around with a two-by-four sticking out of my cheek. They’re sooo attractive! But, because I’d been feeling so tired I thought perhaps I’d try being good about the C-PAP a few nights to see if it helped. To be honest, it didn’t.

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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.

Some good news about Pirfenidone

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Living on the frontlines

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