Skip to main content

Yawn

Ryan arrived safely and scarfed down his left over pizza happily. He’s pretty easy to please I have to say. He doesn’t care that the apartment isn’t perfect – he just goes with the flow.

We put off going to the grocery partly because I was feeling a bit weak and wobbly for some reason, and partly because we were going to my friend Tina’s that evening anyway, so the groceries really could wait another day.

We met Tina and Allyssa, one of our former camp fire kids who is now about to graduate from high school, at a bar and grill sort of place called Governor Stumpy’s. It’s a great little place in the Waldo area of Kansas City with a wide variety of food, so everyone is always happy. I hardly ever eat beef, but I treated myself to ribs and baked apples – yummy! Ryan, predictably, had a hamburger and a beer. Tina and Allyssa were quite worn out as they’d done a fundraiser run for diabetes that afternoon.

We all went back to Tina’s. Ryan and I had rented the DVD “Amazing Grace” and three of us huddled around the television on the floor with Tina’s guide dog, Rosa. Allyssa fell asleep on the couch. The movie was about the ending of the slave trade in England. It was not only a very good movie, but has a great sound track too.

Rosa seemed to eat up all the attention. She’d been a naughty little dog at Mss just a few hours before. Tina was cantering for the Mass and the area of the alter where she stands was decorated with greenery and berries. Rosa seemed to think the berries were a special snack left behind just for her, and as Tina cantered on the microphone, Rosa snarfed down quite a few of the berries.

We all thought that was quite funny, except for Tina of course. And when we got home, sure enough someone from church had called to let Tina know her dog had a little feast at Mass. Grin!

Today Ryan and I have had a very lazy day. I don’t know why, but I’ve been feeling a bit light headed again and just sort of weak – as if my limbs are limp. Of course, my medication schedule is all out of wack and I hadn’t eaten much the last two days, so it’s probably my own fault for not staying on top of things.

So, Ryan and I ate lunch at McDonalds (yuck) just so I could get something to eat before going to the store. We bought our Thanksgiving turkey etc and carted everything home. Then I cooked enchiladas and Spanish rice for dinner and we watched Michael Moore’s movie about the American health care system, Sicko.

I’ll be blogging about that later, on a day when I’m not so tired! Right now I really do need to get to bed so I can maybe be awake at work tomorrow! Grin!

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.