Skip to main content

The getting well creep

Every day I feel just a tad better, which is way better than feeling just a tad worse. Yesterday my cough was pretty bad and today it’s somewhat better. It’s the getting-well creep.

This cold/infection/strep thing has put a major dent in my holidays. I love Christmas. I love the reason for the season of course, but I must confess, I also love some of the external trappings as well. I love baking Christmas cookies. It’s an occasion where I can bake but since I give most of the cookies away, or take them to parties, they don’t end up as part of my ever expanding backside. I love Christmas decorating. I love putting up the tree and in my silly balanced way trying to space the ornaments out so that there aren’t any clumps of all the same colors in the same place. I love buying Christmas gifts and wrapping packages so they look just gorgeous when you give them to someone. I love singing Christmas carols and going ice skating with the camp fire kids.

This season, however, I have done none of these things. I haven’t had the energy and the season is quickly getting away from me. Not being able to do my Christmas “thing” is getting me down. I love the celebration.

Last night I got off the bus at 93rd Street instead of at my usual stop so I could do a little buying. I never have time to do the creative things I so much enjoyed before Hermansky-Pudlak Syndrome started invading my personal space. I used to paint all the time, but now, I hardly ever do. So, one thing I was looking forward to about going to NIH is that I’ll have evenings free and plenty of time to paint. I got out my watercolors Wednesday night, however, and discovered the tubes of paint have all dried up. At home I can easily take a knife, cut the tubes open, slice off some flecks of old paint, add water and presto. At NIH, however, my access to very sharp knives will probably be somewhat limited. So, I stopped at Michaels and bought some new paints. I went to Borders looking for a Christmas present for my mom and I ate dinner at Chili’s. (I don’t see the point of buying groceries this soon to leaving and I needed a veggie.)

Afterwards I decided to do what I normally do and walk home. It’s a long walk, but it’s walkable. This was a mistake. I’m not well enough for that evidently. The first half of the walk is uphill, but it’s a gentle grade. In the car you wouldn’t even think about it being hilly. Well, about a fourth of the way home, carrying the laptop from work and my packages up the hill, I was breathing heavier and heavier. Pretty soon I was feeling dizzy. I had to sit in the grass to catch my breath because I honestly felt like I might pass out. This is a usual walk for me so the experience was frustrating! But, as soon as I got to the second half of the walk that is downhill, I was tired, breathing heavily, but not feeling dizzy or faint. I guess that was too much to take on right now. Who knew?

Now that I’m feeling better I’ve been trying to get myself into the holiday mood by walking around my apartment singing Christmas songs. I also notice that I just seem to run out of air in mid song. That’s also a new one on me. I hope it’s a temporary result of this cold! It does have me very worried though.

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...