Skip to main content

Health Update

Just a little update for record keeping – grin. All and all I’m doing well. I have been fighting sinus troubles off and on – probably more on than off – lately.

My sleeping patterns had been delightfully normal until two days ago. A few code browns at night, and well, I’m all turned around again. My voc. rehab counselor is supposed to be paying a visit in the morning, and I’m trying to decide if I’m better off to try to stay up all night again or not? I've had a LOT of fatigue this past week, but the sleep patterns getting all wonky probably account for a lot of it.

It’s so easy to get out of sync, and so hard to get back in sync again. Groan.

My joints have been bothering me again too – not badly, just a moderate sort of annoying ache that mostly happens in the night or early morning.

I think because of the sinuses, and the work I’ve been doing on the new office, I also have had a pretty constant dry cough for about a week. It’s also been keeping me up at night too. I've had a sore throat as well, which seems to have finally gone away.

Nothing major mind you – just the minor stuff.

I can say overall that compared to where I was a year ago, I’m SO SO much better.

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.

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I...