Skip to main content

A cleaning frenzy

Today I finally felt relatively normal. The bleeding finally slowed down and my energy levels were more up to where I’d like them to be. I can’t help but feel a bit frustrated that two of my precious four days off I spent mostly laying around on my couch or in my bed.

Today, however, I tried to make up for lost time. I cleaned out my fridge and freezer, went to the grocery store, did a load of laundry, dusted the kitchen, dining area, living room and bedroom, cleaned out all the kitchen cabinets, and mopped the kitchen floor. I still have to vacuum, and the bathroom is only half clean. The fumes got to me before I could finish it. I didn’t even touch the study, probably the worst room in the house. I also cooked a dinner, and cleaned up after that too.

For me, that was a pretty eventful day. I’m still very awake though. I’ve always been a night owl, and given a few days off it’s funny how I automatically revert to being a creature of the night. I’d finish the vacuuming, but I’d wake up all my neighbors.

On the whole, I’m feeling pretty good again, and doing an amazing job of not fretting about my pulmonary function tests on Friday. Perhaps it’s because I don’t know what to hope for, or maybe I’m just getting used to waiting for test results. I wonder, however, how long it will take me to get the scores.

The last time I had pulmonary function tests done at KUMed, I asked the tech how long it would take to get the report. “Do you know what you’re looking for?” he asked me. I did, and so he just printed me out a copy on the spot! At NIH they torture you all week and save it all for the wrap up session, which drives me crazy. So, I was a bit amazed when the guy at KU would so readily fork over the results. I didn’t even really have to beg. I wonder if that will happen again?

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.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect