Skip to main content

Health Update

I used to post more frequent updates about my health. I was in the drug trial then, and the updates were partly a way to show the day-to-day life of someone with HPS, and partly a way for me to keep track of things for the NIH.

Now that the drug study has ended, it isn’t that I have fewer problems – it’s that they’re the same old problems. How often can you really complain about the same old thing before no one wants to hear it anymore?


That being said, since I haven’t posted an update in so long, I thought maybe I should.


Last week wasn’t good – which I suppose is partly what made me think of it. I’m not sure if I was having an HPS, GI-related flare up, or just some sort of stomach bug, but it was a horrible GI week. For several days I had the runs so badly that I couldn’t leave the house for fear of getting too far away from a bathroom and having an ostomy explosion. Yuck!


It started, unfortunately, with a particularly awful code brown in the line at the bank. Yet another joy of my life with HPS are occasional “code browns” – my ostomy leaking. When my tummy is upset, the output is like water, so when it leaks, it doesn’t leak slowly. It goes everywhere!


I couldn’t even get home to change my appliance. I had to do it in the bank bathroom with some lady pounding on the door. Thank God it was a “one holer” bathroom!


As this went on for several days my joint pain very much increased. My joints hurt on and off. Sometimes I can go for weeks with no pain. Mostly they hurt every day, but the pain is very tolerable, low level, mostly just annoying pain. Last week, however, it was beyond annoying and moved to down right painful!


As the upset tummy progressed, I started getting dehydrated, having headaches and feeling super tired.


This past week things have been peachy – except that I haven’t had my computer!


If this was a GI flare, or a bug, it lasted a good seven days.


To be honest, I’m still having the runs, but no cramps and only after I eat instead of constantly for days.


There was no fever, by the way.


Otherwise, I think things are okay.


My allergies are always horrible this time of year. I break out in hives daily. I’m taking three different allergy drugs, and as the time for the dose draws closer, I start itching like mad!


I feel like this week I’ve been more out of breath than I have been in a while, but I think it’s probably allergy related, so I’m not worried.


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.