Skip to main content

Afraid of vacation

I’ve just returned from two wonderful weeks visiting my dad and stepmom in Idaho. They’ve retired in a small resort community and bought a house with a lake view that seems to hold a strange attraction for yellow jackets. I’m not kidding. My dad has turned into a kind of yellow jacket John Wayne. He makes the nightly rounds with two cans of bug spray like side pistols trying to get rid of all the nests. If some unfortunate yellow jacket should happen to fly out, he’s after them and, perhaps because of his pilot background, describes the encounter like a fighter pilot describing a dog fight. It’s pretty entertaining actually, as long as I’m nowhere nearby during the spraying. Grin!

It sounds like a strange thing to say, but honestly, I was a little afraid of going on a true vacation. I haven’t had one in years and years. Yes, I stayed with my mom for a month a bit more than a year ago. Yet, because I was gone so long, I had to find ways to work on the trip.

The same is true when I visit Ryan and Sara. When we went to Florida, it was a vacation, but not scary. I was pretty sure the family would keep my mind occupied so it didn’t venture to places it shouldn’t go. The idea of relaxing – really relaxing for more than a day – actually made me anxious.

Before I left “traditional employment” my vacations consisted of going to Club Med (NIH) or other HPS-related trips. Don’t get me wrong. I’m not complaining one bit. I’m just saying it’s been a long time since I’ve even tried to spend more than a day or two (on purpose) unplugged from HPSland. Honestly, I was scared.

Everyone copes differently.

For me, coping has a lot to do with being very involved and very busy.

Some have suggested I’m too involved. They think it isn’t good for my mental health. And, sometimes it isn’t. We do deal with a lot of sadness. The more detached you are, the less aware you are of those sadnesses. For me, however, that is worse than being incredibly involved. At least I’m involved I feel like I’m not avoiding the time bomb in my lungs. I feel like I’m addressing the issue head on. I know it makes a difference. At the end of the day with so many losses and things that are normal for everyone else that have eluded me, making that difference means a LOT.

Still, everyone needs a break and I needed one.

We did stay busy, but it was a different kind of busy. We explored some of the mountain towns and mountain roads. I took a million photos, which I truly enjoy. I probably drove my dad crazy trying to hang out the car window with my camera or asking to pull over to photograph someone’s barn. I loved it though.

And, perhaps as sweet, riding in the car and resting at home, my brain didn’t go to dark places. I didn’t get that panic feeling I get when I know things are being left undone. I thought often of my HPS family, but not in a panicked or worried way. Instead, it was thoughts more normal. As we did our sightseeing, I thought of my HPS friends who also are so in need of such a break or who would enjoy seeing the things we saw.

Vacation wasn’t scary after all! Grin! What a happy discovery! 

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...

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.