Skip to main content

Arrived at "Club Med"

Well, I'm here.

The flight was great. I really do love Midwest Express. I hope nothing happens to them with all the rises in gas prices etc. It is so nice to fly and not feel like you've been wedged into your seat like freight.

Hector met me at the airport. I enjoy riding to NIH with Hector the cab driver because he's such a great source of information about what's going on in HPSland. He gives me the down low on how NIH is going over with the crowd from Puerto Rico, whether there are any moral issues that might need attention etc.

I arrived in time to actually order a real dinner. That almost never happens. Usually I get here after the last call for dinner and I get a very dry turkey sandwich that tastes something like cardboard.

Dr. Markello was here when I arrived which is always a big treat. He really should have been a professor. I really do enjoy just picking his brain about what's going on with the research. Every time I learn something I didn't know before. Every time I spend time with him I understand the whole picture just a bit more clearly than I did. So, for me, that's a big treat.

I am getting nervous about tomorrow. Tomorrow I have my pulmonary function tests first thing. I have noticed that my breathing hasn't quite been as perfect as it has been. I am getting a little out of breath more easily, but I've been chalking it up to allergy season. Tomorrow, even if I know it's likely allergies, I'll still be worried if my numbers are down. It's just the way it is.

Dr. Markello told me they're adding a new kind of pulmonary function test, so I'll tell you what that was like afterwards.

But, perhaps what I'm even more worried about is the IUD.

Yes, I finally bit the bullet and am going for the IUD. Women with HPS can have very bad periods, and as I've gotten older my periods are getting worse and worse. It isn't just the bleeding. The craps are worse. It seems to aggrivate my digestive issues etc. It's seems as if I spend half the month recovering from my period and for at least a week out of the month I feel like I've got a horrible flu.

So, it's time for that little monthly friend to bid farewell.

I've tried several different types of birth control pills to control things - but I've had a bad reaction to the pils every time.

So, this is the next step.

The problem is that I'm so nervous about having it put in. Tomorrow I have to have a vaginal ultrasound. Oh boy, that sounds just plain kinky. I'm a shy kind of girl and that has me all worked up too.

So, tomorrow could be a long day.

And tomorrow night Dr. Markello is going to try to do a sleep study on me. I am looking forward to that since I've been so, so tired!

I think poor Lisa wants to go to bed, so that's all for now. Stay tuned!

Comments

Anonymous said…
Sending hugs, hugs, hugs! Anxious to read an update.

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.