Skip to main content

Health update

Time to post a little update for my records. Grin. As many of you know I was having a lot of trouble before conference with a bad cold. I was really worried that I’d go to conference, get worn down, and make myself sick again.

Interestingly enough, my energy levels have been much, much better these past few weeks. While conference was exhausting, it was a normal kind of exhausting. I came back and while I’m still taking naps in the evening (which I don’t like) at least I’ve been very awake, alert and on task at work. I’ve actually been feeling pretty great.

Yesterday, however, I ended up staying home (and trying to work as I could.) I haven’t had any GI issues in some time, but I guess whatever I ate for dinner Monday night didn’t agree with me. It was like a volcano exploding over and over again. And when you have an ostomy, and you get the runs shall we say, it’s very easy for leaks to occur. And they did. Over and over. This, of course, irritated the two little bleeding areas around my stoma which had been doing so much better. They got to bleeding and between the runs and the bleeding, I couldn’t keep a pouch on.

That meant no sleep. I was up all night and in the bathroom about every 45 minutes. Forget work after a night like that. I’m better off to sleep in and work from home in the afternoon. So that’s what I did, only in the afternoon the mess started all over again.

So far so good today, although I’m feeling tired again.

The only other thing to report on the health front is that my joint pain that comes and goes seems to pretty much be all the time now, although mild. If I could just lose some weight, I’m sure that would help. I just can’t seem to get my life together. My apartment is even worse than usual. I need a haircut. I haven’t been to the grocery.

The problem is that after you’ve been severely fatigued for a long time, when you start to feel better the pile of every-day tasks waiting for you is huge.

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