Relief in small doses

You never know who’s reading your blog. I guess that’s part of the fun of it. Grin!

Today I had a long talk with someone in the know about HPS pulmonary fibrosis. She was reassuring that this nagging cough might not be the dreaded pulmonary fibrosis cough, but rather a restrictive airway asthma-type cough. This still isn’t good. It’s important to keep asthma under control to try to slow down the fibrosis – but it’s a lesser rung on the ladder, sort of speak.

The reasoning she presented made sense. I was able to calm down a bit.

Still, today was not one of my most productive days. Sunday I was a work horse. Yesterday I was a workhorse with a late start in the race. Today, I’m the 30-year-old nag in the back of the pasture just trying to stay upright. I’ve felt so tired all day. Oh well, tomorrow is another day.

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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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