Skip to main content

Back to work

I’m eating lunch as I’m back at work this morning. I was dreading coming in here. I was dreading any of the left over problems from last week. I was dreading trying to concentrate when I’ve got so much on my mind right now. I was dreading having to tell my boss that I needed a week off in a month, and that I’d be needing these weeks off periodically if I get into the trial. That went amazingly well, although what are they going to say really. But, she was very supportive. I’m dreading the utter hell it will be work wise to be gone for a week several times a year though.

This morning I cleaned out my e-mails, which took three hours. It was a mindless task for the most part, and that’s what I need today, some easy mindless tasks that are just enough to keep me busy, but not overwhelm me. Feeling overwhelmed seems to be my theme right now.

How am I going to get everything done? How am I going to miss all this work? How are we going to do all that needs to be done for the HPS Network? At the Genetic Alliance meeting I sat in session after session full of great ideas, great people to network with and great things to think about. At the same time, I felt panicked almost the entire time. How are we going to do this? The task seems so overwhelming to me right now. Everything seems overwhelming.

I did get a wonderful surprise this morning though. I walked out my door past my porch to catch the bus. My apartment has a good sized fenced in porch area that I just loved when I moved in. It has English ivy growing over the fence, and is large enough to have people over to eat outside and plant flowers. When I moved in and wasn’t having trouble breathing, the small area was very easy to care for, but now, even though it seems like nothing, I haven’t been able to maintain it. I get out there to cut the ivy and the bushes back, and in five minutes I’m short of breath and wheezing. I think it’s my allergies setting off the other breathing issues. The past few years Ryan or my dad have visited and have cut it back while they were here. But this year no one has come, and it’s been more than I could deal with. I’d go out and cut a bit, and by the time I’d be back to cut some more in a week, the first part was already overgrown.

So, while I was gone, several of my friends came over and whacked that ivy back to the stubs. They pulled it off the fence and trimmed the bushes. I’m so grateful and very touched. Wow! They didn’t just help. They saw I needed something and just did it. And I’m sure that my neighbors will appreciate it as well!

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