Skip to main content

Groggy Girl

I’m getting really tired of feeling tired.

Last night I slept like a rock. I woke up once with some reflux, but otherwise slept through the night barely even disturbing the covers. I woke up feeling pretty good.

My morning at work was very productive and things were humming right along until about 1:30 pm. It was as though I hit some kind of brick wall. Just like that I started feeling really, really tired. I couldn’t focus, had trouble keeping my eyes focused on the same line of text and pretty much just yearned to crawl under my desk and take a nap!

I came home and slept for three hours. Several HPS’ers tried to call, but I didn’t even hear the phone ring. Finally I got up and went for about a 20-minute walk. I just didn’t have the energy for more. It wasn’t that I was having any trouble breathing – I just felt floppy, like a rag doll. And those weird hot flashes where I get all flush in the face were back this afternoon.

This evening my ankles and wrists hurt – not horrible, horrible, but they do hurt.

I’m getting frustrated as I have a freelance project that’s late, and every time I try to work on it, it’s all I can do to keep my eyes open. I’m behind on the HPS newsletter and the preparations for ATS.

Oh if this would only subside enough to get through the next couple of weeks!

I’m supposed to be at NIH in less than three weeks. I know NIH isn’t supposed to be my primary point of care….bla bla bla…..but I just don’t want to miss another day of work.

I really need to get on finding a new doctor here. That’s another reason I dread going. I can’t get into my doc and I don’t want to see yet another stranger and tell them I’m “tired.”

A few weeks ago I was all set to get rid of my current doctor – not because I don’t just love him. I actually really, really like him. I just can’t ever get an appointment to see him. I made one earlier this week so I could go over whatever happens at NIH and touch base – and on April 3rd the only appointment opening was in June.

I wanted to try to keep him somehow because as I worked my way through the whole kidney thing, the folks doing the tests would all ask who my doctor was – and when I told them they all went, “Oh, he’s great...” I get the impression he’s well entrenched in the medical school, has quite a bit of administrative responsibilities (thus why I can’t get an appointment) and that if push came to shove, he’d probably have some clout. That could come in handy.

On the other hand, although I’m not very complicated right now, all that can change. I feel like as these little wonky things come up, like this fatigue, I need the same person involved so they get to know me and have a history with me.

Okay, I’m going to bed. Yawn!

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