Skip to main content

Sleep is a good thing

Last night I slept. I finally slept well (and without the CPAP - shame on me.) Poor Ryan was treated to a night of what he's dubbed, "Snorty the dinosaur." But, I felt great today!

Ryan and I met a friend of mine from college, Leanne and her husband to be, Brian. We had a wonderful day (pictures to come later.) We walked around Tidal Basin (
sp?), through the Roosevelt Memorial and back. Then we got on the Metro and went to a great restaurant, Ebbitt (one of the oldest in the area and I'm not sure if I'm spelling that right either) right around the corner from the White House. So, although I've done it several times before, I had to go get my picture taken again in front of the White House.

We were celebrating my great test results. I'm
definitely in the mood to celebrate. Just like when I entered the trial, it seems like bands should be playing and confetti should be falling from the skies. Ordinary people can't possibly appreciate how great I feel. These results weren't just for a short amount of time - the gains have sustained for a year! Yeah!

Tomorrow I'll be flying home. Thankfully I've got Monday to do grocery shopping, laundry and all the house work I didn't have time to finish before I left. I didn't check up on work during the week I was away. I was a bit pre-occupied. Now, I'm afraid of what I might be walking into Tuesday morning. Several thousand e-mails at least. God only knows what else. Yikes. Doesn't anyone understand - it's time to party! HA!

I think Leanne and Brian do. I think Ryan and Debbie do as well - he he he - so hopefully when I waltz into work on my fluffy white cloud, the normal crud of life won't deflate me.

Comments

Kathryn said…
Congratulations Heather. I am so happy for you! I'll pray this week is a normal and easier week for you back into the transition of life.

Love you girl!

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