Skip to main content

So much for a little modesty

I’ve been so busy since getting back from NIH that I haven’t had a chance to update on all the visit – and well, umm, to be honest, it’s a little embarrassing. But, yesterday this “little” problem reared it’s head and I had a very HPSish day – groan.

For about four months now I’ve had this “sore” thing on my breast. It started out as just one of them, and has now morphed to four of them. They start out like little zits. They’re sore and when they rub against something they hurt until eventually, they burst open in all their pussy glory. And then they bleed, which isn’t an earth shattering problem as much as it is an annoying problem.

When I was at NIH last time they cultured the sore and decided it was a minor little staph infection. I did antibiotics and it went away, only to reappear about a month later. I went to my doc. at home and was given more antibiotics. It pretty much went away again, and then came back.

This time when I was at NIH they were scabbed over and so couldn’t be cultured. Dr. Merideth and Kevin, however, were concerned. Apparently there is a type of breast cancer that can present like this. But, they found nothing. They bent over backwards and got me an appointment at the dermatology clinic. Dr. Merideth and Kevin even went with me to the appointment.

But, the dermatologist said it was nothing. Her advice was to not put a band-aid on it – just ignore it. She’s not an HPS doctor and I’m not sure she appreciated the nature of the problem. I’m happy to leave it alone – but it’s not always happy to leave me alone. And when something on me bleeds, it bleeds. It bleeds through band-aids, gauze, bras, shirts, sweaters – you name it. One can’t very well walk around the office with blood stains on one’s clothes.

So, yesterday morning I was in the shower and when I got out I looked down at the towel and saw blood. Sure enough, one of the little suckers was bleeding again. Not even the whole thing – just a tiny, tiny part of the healing skin around the outside edge. But, it bled. And it bled, and it bled some more.

I was getting frantic. I missed the first bus and I was worried I was going to miss the last bus to work. We’re on major deadline. Finally it stopped. I did as instructed with the gauze, got dressed and made a mad dash for the bus stop almost missing my ride.

When I arrived at work and went to take my coat off, the little sucker had started bleeding again – through the gauze and my shirt and onto the interior lining of my coat. Geesh! I no sooner got to work and had to make a $20 cab trip home.

It’s so frustrating when seemingly minor things like this can cause so much havoc! When I got home the bleeding started all over again. My entire morning was shot over a little sore not even half the size of my pinkie nail.

Today it’s behaving. Fingers crossed!

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