Skip to main content

Escape

I keep having these days where I feel so great, and then the next day or two I’m completely exhausted. It’s like I’m a little energizer bunny and I get wound up, I go and go, until I run out of batteries and splat – I’m down for a day.

Today I spent a few hours on HPS stuff, but not as many as I should have given all the things I’m behind on. Well, technically, I spent the better part of the day of HPS stuff, but I don’t count the crafts completely. I’d probably be doing them whether we were planning craft sales or not.

It was a beautiful day. I had all the doors and windows open. The fresh air didn’t affect my allergies or breathing at all, but the breeze felt good.

I’ve never been good at balancing my time. When I was a kid we always had this rule that you couldn’t have “fun’ until all the work was done. It’s a curse I’ve carried into adulthood. I can’t let go and enjoy myself until “everything is done” – the trouble is nothing is ever done. I’d probably be more efficient, and wouldn’t run out of batteries so fast, if I could cut loose now and then.

The crafts I did today were simple and mindless – not much artistic talent involved – but it was therapeutic.

If I’m honest with myself, one reason I can’t “stop to have fun” or even stop to take better care of personal business is that sometimes too much down time for my brain just isn’t a good thing.

Comments

Anonymous said…
Heather, I can relate to a great extent with having too much down time. Down time gets me into trouble or mischief or whatever. Keep up with the crafts. Are you in need of a dontation at Michaels for the crafts? I would like to contribute to the crafts, but not very crafty, so I can do money. Let me know. -Julie

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.

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...