Skip to main content

AWOL pill

Catastrophe! This evening I was taking my last dose of Pirfenidone/placebo before logging on one last time and going to bed, and horror of horrors, I dropped one of the precious pills on the floor. It was like dropping a nugget of gold, and then not being able to find it.

I crawled around on my kitchen floor, which is the size of a postage stamp, for a good twenty minutes trying to find it. I even tried to move the fridge and the stove slightly (with no success) to see if it rolled under them. Not only did I not find the pill, but I discovered that the floor I only so proudly mopped yesterday is filthy! So much for the Swiffer Wet Jet mop! I guess it’s back to a sponge on my hands and knees. Not only is the floor small, but I can find the dirt better that way.

And, just as I was closing a book I was working on, I happened to switch on the TV and found that one of my favorite movies of all time, REDS, was on. I couldn’t help but watch part of it as I haven’t seen it in years. I really must find a copy even if only for the sake of nostalgia.

It’s a long movie about a couple, Jack and Louise, who are political activists, very left of center, around the time of World War I. They end up going to Russia to cover the Bolshevik Revolution, but end up getting swept up in it themselves.

I loved the movie. When I was in high school I attended a Department of Defense Dependent School in northern Germany. It was the time of the Cold War and our mission was to repel a northern attack from the Russians, should it ever come.

Some people rebel in high school by smoking weed, or having sex – but not me! The most rebellious thing I could come up with (that wouldn’t get my mom in too much trouble as the school system’s behavior specialist) was to study the Communist Manifesto and Hegel cover to cover, hang a picture of Karl Marx in my locker, and make a somewhat pathetic attempt at learning Russian (something I never actually achieved.) I was fascinated with the overthrow of the Czar, the intervening years and the Bolshevik Revolution. I had a book called The History of the Soviet Union that I studied thoroughly, even writing questions and making notes in the margins. Oh how I miss those days of being a student (high school or college) when you can read something in a devouring kind of way, chew it up and spit it out again. These days I’m just so busy trying to survive, I never seem to have the time to read much of anything anymore for strictly pleasure – let alone study it.

Today our issue of the magazine FINALLY went to press, well mostly to press – and the rest of the week shouldn’t be too bad. But, stupid me had to go and find a way to stress myself out.

Thinking of my lack of funds for Christmas presents, I took on a freelance story for the Kansas City Business Journal about changes in tax regulations for companies that make money transfers overseas. Can we say yawn??? And this project being taken on by a girl who takes her taxes to H&R Block because just looking at my own spreadsheet gives me hives. What was I thinking???

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.