Skip to main content

The simple things

These past few days I’ve been trying to think of something really awe inspiring to say about Thanksgiving. I’ve been thinking of all the things I’m thankful for, like supportive friends and health that’s reasonably good, all things considered.

But, the truth is I’m not feeling awe inspiring. What I’ve been most thankful for these past few days was four consecutive days off! It’s been like a little version of heaven. HPSland has been pretty settled, and I actually managed to make it through a 24-hour period without worrying about something associated with work. I’ve slept a lot, and eaten too much, and enjoyed having Ryan around. I went for a nice walk this afternoon in the sun.

I had hoped that after four days off I’d feel rested, but honestly, I feel as fatigued as ever. Oh well, I really did enjoy the mental break if nothing else.

Tomorrow I have to go back. It’s going to be a tough next few weeks. We’re short staffed, as always, and we can’t wiggle around too much with the next deadline because the magazine has to be at an event. I’m dreading the push, the rush, the craziness that I know the next few weeks will bring. It’s just been so, so, so nice to sit in my living room and listen to soothing music and read!

Mr. Boom Boom went away for the holiday so it’s been so wonderfully peaceful! I can’t remember the last time I had four days at home that didn’t involve sickness. I could get used to this.

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...

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...

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.