Skip to main content

Health Update

Again, for the sake of record keeping, here's another update.

Once again I'm having trouble with the skin around my stoma. There's another sore there, or it's still the last one - I don't even know anymore. Yesterday afternoon I had five code browns - which pretty much ruined getting anything accomplished. It's so irritating! And, of course, the more time you change the ostomy, the worse the problem gets. Now the area around my stoma is just raw from pulling off appliances. It's sore - but thankfully not so sore I can't stand it or anything - just sore enough to let me know it's there.

The skin infection on my boobs is back too - and it has been better for months. I should go back to the dermatologist, but geesh, I really don't want to. I'm trying all the things they had me do last time - and I had an extra tube of the antibiotic they gave me last time. Last time one tube did it (but NIH gave me another when I was there - and I kept it.) It does look as though there is improvement, but it's yet another thing that bleeds and leaks through my clothes. My wardrobe really can't stand this!

I'm not supposed to "cover" the sores, but I have to. I can't stay at home for days on end and thus I've got to do something to keep them from oozing and bleeding on my clothing.

The good news is I feel pretty good - I just seem to "leak" everywhere I go. HA!

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