Skip to main content

Culinary tantrum

Today I had a KUMed appointment with my home doctor to bring him up to date on the events of the summer. I took him all the lab reports from NIH, as well as some information about Pirfenidone. He seemed quite pleased with how thorough NIH was and all the tests they ran. I also had to get new copies of all of my prescriptions as my nearby pharmacy went out of business.

The good news was that when he listened to my lungs he heard NOTHING! They sounded clear as a bell! For the last year it seems like almost any time anyone listened to my lungs there was at least a bit of “crackling.”

I have felt like I’ve been breathing a bit easier lately, but attributed it to the psychological aspect of being in the trial rather than an actual improvement. After all, it’s been much less humid and not hot, which is much better breathing weather for me.

The bad news, however, was that I didn’t lose a single pound – not even one! I just can’t get my head around how that’s possible. If three weeks of almost solid diarrhea and a much decreased appetite doesn’t even help you lose a single pound, then what else will? Geeesh – in fact I’d gained three. I was upset. I thought for sure I’d lost something, even a little something. It was going to be the one up side to the constant visiting the bathroom and ostomy leaks.

So, in response I did the only sane thing a person could do – I threw a culinary tantrum. Craving fried chicken for weeks (but not willing to give up the Weight Watchers points for it) I marched right over to Jazz, a Cajun restaurant across the street from the hospital, and ordered exactly what I wanted – fried chicken, hush puppies and cole slaw. Take that! Then, I went to Starbucks and got a fufu coffee for desert. HA!

Okay, I realize this was not a rational response, and now that I’ve got it out of my system I guess it’s time to climb back on the wagon for all the good it does me – but maybe after tomorrow night. I’m having Mexican with some girl friends. I’ve got a really bad attitude right now.

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