Skip to main content

Feeling blonde

I’m feeling like a bit of a ditz lately. I’m so distracted!

Yesterday I had to leave work at noon because my ostomy pouch sprung a leak. It was very irritating as it happened right before the entire office was about to leave to meet our former art director for lunch. I was anxious to hear all the news, and couldn’t very well explain to everyone why I suddenly couldn’t go. I called three cab companies before I found one that had shorter than a two-hour wait. It cost me $20 to get home, and I had to wait for an hour praying that I’d get out of the office before the leak became apparent to everyone.

I worked on my New Orleans story for a while, but the story isn’t going well. It kills me. It’s a great story. I have notebooks full of notes. But, my mind is so distracted by the rest of my life that I’m not feeling very inspired, and so the story reads dull – or maybe I just feel dull about it.

Then today I went to lunch with our intern and as we were paying the check, I felt another woosh. Oh crap – literally! Even if I go home and am working, I’m always concerned about the perception among my co-workers. Everyone is very nice about it, don’t get me wrong – but to have to run out of work two days in a row just doesn’t look good. Add to it this pulmonary function test thing that’s still hanging over my head. How much work am I going to miss over that?

I managed to rig a temporary solution in the restroom with some gauze and surgical tape and prayed it would hold until I got home. And it did amazingly enough, yet I was so distracted all afternoon worried that it would start to leak big time, and I’d be cab stranded at the office with this growing mess and no way to get home – that I didn’t get much done this afternoon. Again, the New Orleans masterpiece suffers! If I could just work at home and do what I need to do life would be so much simpler. I felt like politically it was a bad idea to leave if I could manage to stay, but if I’d gone home, attended to my problem, and actually accomplished something this afternoon the magazine would have been better off.

By the time I got home tonight, cooked dinner, returned phone calls (all but one of which was HPS-related) etc. it’s now almost time for bed. And, I still haven’t worked on the story.

Tomorrow is newsletter day, so I can pretty much count on being interrupted all day long with that project.

Moan!

I’m also wondering why it leaked two days in a row in the exact same place. The skin and stoma look fine to me, so maybe there’s a problem with the box of appliances. Maybe they’re defective somehow. I opened another box, and if this one works I’ll pitch the first box. But, if that’s not the problem I could be in the same fix tomorrow. If that happens, then I probably need to go in and have someone look at it to see if there’s a problem I just can’t see. Great! Another day off work!

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.

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