Skip to main content

A sneak peek at the "HPS remote office"







Growing up as a kid with a vision impairment, there are a lot of things in life I never automatically assumed I'd be able to do on my own - whether because of my own lack of confidence or the messages I got from others. I worried much more than the average kid about things like just being able to get from point A to point B - heck, even just being able to find point B!
As I grew up, and figured out how to do all of those things that once seemed so impossible or scary, the upside (besides learning to be independent) was the great sense of satisfaction you get from surprising even yourself.
One thing I've never been that great at is using tools or building anything. When it came time to order a desk with the help of Kansas Voc. Rehab, the best deal I could find for the money I could spend was a desk that had to be ordered and then put together. It came in three large boxes and had lots of screws and washers and bolts and such things.
I assumed I'd need help putting it together, and had some offers - but in the end the urgency of needing to get this done made me give it a shot on my own, just for grins - you know- to make sure all the parts were there.
Guess what! I put it together by myself! Even though I really couldn't make heads or tails out of the instructions, I just sort of figured out how the peices went together. Now, I can't help but feel that childish sense of pride for having mastered a new task I didn't think I could do. Grin!
I have some things to put on the walls - and a lot of things to put away - this is sort of the bare bones. I also will tame the cord monster under the desk when the rest of the equipment arrives. It was supposed to be here today, but it's been delayed another week. Groan - that's another story.




Comments

Anonymous said…
You are totally awesome Heather. You put that together all by yourself!!! Now that you a builder, what is your next project? Congrats on a job well done. It looks great.
Unknown said…
Hey, good for you!! I know I was TOTALLY thrilled when I put my computer desk together and came up with a desk that was solid, not wobbly, something I could trust my equipment on. :) So, kuddos to you! :)

Jen

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.