Skip to main content

Come to Mama!

My life, and my ability to blog and stay on top of HPSland, have been somewhat hampered lately by my ailing computer. My computer is going on eight or nine years old. Like anyone dying of old age, it’s slowly winding down. It shuts its self off in protest frequently, runs much slower than it ever did, makes odd whirring noises and I can’t even defrag the drive anymore because it freezes up half way through.

I’ve been saving money for a new computer for a long time. I don’t know a lot about computers. For me, it’s a foreign language – but I know what I want it to do. Periodically I’ve shopped for my new baby. But for now, things are so up in the air in my life that I can’t make any commitments, not even to a piece of machinery. Resources are too precious to spend without extreme caution.

So, to tide me over these next few months, Ryan and Matt have come to the rescue. My brother Ryan just bought what sounds like the Royal’s Royce of computerland. He no longer needs his five-year-old laptop. And Matt, our fellow HPS’er and Ryan’s house mate for the summer, is a techie of techies. Matt has carefully cleaned Ryan’s new computer etc. to get it ready for me.

Last night I think they finally shipped it to me. I can hardly wait.

When I’ve stayed with Ryan I have to admit I’ve found his computer a bit awkward to use – but I think it’s all what you’re used to using. I’m looking forward to a little portability. After eight to 10 long hours at work sitting at a desk, there are nights when I come home ready to work on things, but unable to stand sitting at a desk another minute.

I still want, and probably need, a new baby. But right now, I’ll just be happy for an aging orphan that doesn’t shut down every 15 to 20 minutes.

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.