Skip to main content

A quick message on Thanksgiving

First, let me apologize for any typos, spelling errors etc. up front. I just got access to a computer for a few moments, but it doesn't have any of my adaptations made to it, so I can't actually see what I'm typing. I really hope my fingers are on the right row!

Second, Happy Thanksgiving to everyone out there! I really wanted to get a Thanksgiving post done before I left home, but with work etc. it just didn't get done. My aunt and her friend are staying with me when I go home so we can go to the Plaza in Kansas City and see the lights - but boy are they in for a mess! I didn't get all the cleaning done before we had to leave. I cleaned the bathroom, but I was out of vinegar so had to use old cleaner I had before I started having these breathing problems. I just got so winded trying to clean that I couldn't finish it all. I haven't dusted my bedroom etc. I vacummed, but not well.

Today I was thinking to myself that if we went around the table and asked what we were thankful for this year, what I would say. (We didn't do that.) It's strange. I've said this before, but sometimes I feel like I inhabit this other universe. If I said what I am most thankful for, I'd have to answer this.

I'm thankful that I'm in the drug trial. I'm thankful that so many people have stepped forward to give all of us with HPS a chance. I'm thankful, so thankful, for all of my HPS friends. When we call ourselves the HPS family, for me, it's so true! I've only been away a day and I miss you all already! How terrible this fight would be were it not for all of the wonderful people I've met in my HPS family.

I spent thanksgiving on my cousin's farm. She's very, very pregnant and due in two weeks. After stuffing ourselves with turkey some of my aunts and I went on a walk around the farm. I thought to myself, "Oh, if only I could show this to my HPS friends in places like New York!" The vastness of Kansas once you get outside of Kansas City is awesome. You can stand at the edge of a wheat field and feel as though it stretches on and on and on to the very edges of the earth without interruption.

Well, more later. I hope that everyone had a wonderful Thanksgiving! Trust me, I write better when I can see what I'm typing!

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

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