Skip to main content
Speed bump

Note: Blogger is acting up in a lot of ways right now. It won't let me use headlines, and when I go to approve comments left, they disappear. So, please bear with me a bit.


Lately I’ve been feeling so much better than I’d felt in months. My joint pain, while still present when I get up in the morning, usually goes away with a hot shower now. My runs have all but gone away. My breathing has been good (except when outside in extreme heat and humidity). The hives haven’t come back again since the last episode. I have much more energy and am thinking more clearly.

But, there’s always a speed bump in these things. This weekend things seemed to have flared up a bit. The runs were back, and the meds didn’t do much to counteract it. My joint pain, while not horrible by any stretch, was worse. I tended to get short of breath more quickly, but then again, I’ve been on a cleaning blitz for my mother’s coming visit. Cleaning, with the resulting dust and fumes from cleaning products, always do a number on my breathing.

But, worst of all is that I’ve got three little bleeding sores by my stoma. This has made it difficult to keep a pouch on – and it’s slowed down the cleaning blitz. These little sores are also somewhat painful this time. Mind you not horribly so, but they are bothering me.

I’ve been doing so much better, but I know from experience that these little bumps in the road happen. It’s just frustrating when they happen at a time when you really need to be getting something else accomplished!

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...

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...

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.