Skip to main content

Long night, Long week

This is going to be a long night, and a long week. Last week I missed almost the entire week of work thanks to this strep infection, and the week before I may have physically been at work, but I was feeling so badly that I wasn’t exactly efficient.

Yes, I am feeling better, but STILL not great. I feel just a tad better every day. I'm still coughing and still blowing my nose a lot. Today, however, my stomach has been acting up. I haven’t been eating much, but this evening I went to the Mexican place around the corner and got a cup of their wonderful tortilla soup. It’s got a clear chicken broth with bits of chicken, tomato, cilantro, onion, a bit of cheese and of course, tortilla strips. They also put a few slices of avocado on the top. Ohhh…soooo good and not really spicy. But, within 30 minutes of eating this I had to empty my ostomy pouch three times. I felt weird – no stomach cramps but more like a sort of light headed queasy feeling.

So, is this a reaction to not eating? To the antibiotics? To sinus drainage? I don’t know but I’ve got a pile of stuff that HAS to be done for work in the morning, and I feel like going back to bed again. If I can just make it through the next week I’ll either be better, or I’ll be at NIH. I hate to go to NIH if I’m sick, but on the other hand, at least I know NIH will pay attention to me.

We’ll see how things go this evening. If the upset tummy keeps up I may have to give my doc. another call – but I’ve got a pretty good feeling he’ll just tell me the antibiotics probably are upsetting my stomach. And he's probably right.

Frankly, I don’t really care. I just need to be well so I can get this issue and this week’s newsletter out the door!

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