Skip to main content

Health Update - my little ostomy friend feels ignored

I need to post a health update. Just a warning to anyone squemish out there.

This week hasn't been a good HPS week. I guess I can't complain because I had been doing much better. Code browns were down in frequency, energy levels were up (even if my sleep patterns are wacky and my high energy time is in the middle of the night.)

I've been quite busy working on HPS-related projects.

And then bam - the brick wall hit this week.

I started my period. I must say, these are WAY better since I got the Murina, but they haven't left. I still have at least one heavy day (better than three or four). I sort of crack up with Dr. Meredeth susggest one should seek medical attention if you go through more than a pad an hour for more than eight hours. I've done that every month for years! And that was yesterday - went through half a large pack of the ultra thick pads in 24 hours.

The other trouble with that time of the month is that I get the runs badly. It was as if someone turned a crank on my stoma and let the faucet run. And that, of course, meant code brown galore. In two days I've gone through a month's worth of supplies - probably about $200 - but what are you going to do?

And, that kind of action on the ostomy front tends to make one dehydrated etc. I've had a bad headache for three days. So, every time I lay down to try to apply pressure and make one of these appliances stick, I fall asleep. It's probably a combo of the period and dehydration - I just haven't been able to stay with it.

It's a reminder as to why I'm in the situation I'm in. I think I would have missed at least 2 1/2 days this week had I been at work. And if I'd managed to physically be in the office (which wouldn't be possible thanks to the runs) I would have been useless.

It's been frustrating because I get up and try to work on things and I can't concentrate. My head throbs. I feel achy (and my joint pain had been better.)

Tonight I finallly feel better - although the runs continue. I've had a pouch on for six hours though! It's a record!

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.