Skip to main content

Pick'in on the patio, Dems and YouTube

Last night I was happy as a clam, thanks to Ryan’s gift of a computer, and Matt’s talents that rehabbed the old machine. I sat at Homer’s, outside for Monday night “Picking on the Patio” with my latte and my laptop. I listened to a mix of John Denver tunes, a few original pieces and of course the old fashioned gospel selections, as I worked on HPS projects.

How perfect is that?

It was perfect until some schmuck, who looked to be about in his 60s, sat next to me and started smoking. While smoking is prohibited inside, the jam session is held outside and anything goes.

About that time Donna called so we could touch base on a few things and I decided it was time to bug out.

I have this love hate relationship with smokers. The love part is that I truly understand that it isn’t as simple as quitting. If quitting smoking is anything like my feeble and failed attempts at dieting, I know it isn’t that simple. At the same time, there’s a part of me that gets truly irritated with people that were given a perfectly healthy set of lungs by nature, and have no more appreciation for them than to sit and puff cancer sticks.

I simply can’t be around second-hand smoke. End of story. I’m working too hard to keep breathing to do anything that might further aggravate my pulmonary fibrosis. No smoky bars, nightclubs or restaurants for me. While some restaurants complain that smoking bans will hurt their businesses, I’m in the camp that calls ahead to make sure it’s a smoke-free zone.

I might have said something, but since I needed to talk to Donna anyway, and didn’t want to chat on a mobile phone in the middle of a concert, I just left.

When I got home I discovered the CNN YouTube presidential debates were on. Actually, it was a replay from earlier in the evening.

I set up shop with the laptop in front of the TV. I couldn’t miss this.

I have to say I thought the YouTube format was an improvement on some of the debates of the last few elections. Policy aside, it was striking to me what an impact one’s demeanor can have on one’s credibility. (Not that this was a new discovery) While no one exactly scored a home run, the debate did help me to cross off half of the candidates from my list of interest.

To be honest, I’d intended to submit a question to YouTube for the debate. I just ran out of time.

I was disappointed that, given the throng of entries regarding healthcare, that this subject wasn’t given more attention and came up in the last 15 minutes.

But my subject of interest didn’t come up at all. Maybe I’ll try to make an entry for the Republican debate.

My question was: Where will funding for medical research, and institutions like the National Institutes of Health, fall in your administration’s funding priorities?

I don’t mean to launch a massave should-we-or-shouldn’t-we debate here about the war in Iraq. Yet, I find it striking that so far we’ve spent more than $400 billion on the war (not even the entire defense budget – just the war) and yet the NIH budget, our nation’s leading federal vehicle to promote medical research, has seen budgets cut or left stagnate and in 2008 seems to be expecting a budget somewhere around $28 billion.

I’m not saying we don’t need to fight terrorism. I’m not that naive. But, we also need to fight the threats of cancer, heart disease, diabetes, pulmonary fibrosis and yes, we need to let the researchers learn from diseases like HPS.

Comments

Anonymous said…
Well stated, Heather.

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’m h