Living on the frontlines

There is something I turn over and over in my mind. It holds me back from blogging sometimes because I never reach a clear guideline about it. How much do we say about living with HPS, and when do we say it? My background is as a journalist. Telling the story is just in my DNA (sort of like HPS – grin). Is there ever a down side to telling the story? Most of the time I don’t think so, but there are times I question myself. What motivation does anyone have to find a cure if they do not truly understand the consequences of not finding a cure? Unfortunately, by the time we HPSers start to more fully understand the consequences of not having a cure, we are often too ill to do much about it. We need those who are not struggling with lung disease, bowel disease, or bad bleeds, to be our alleys and help us do the work it takes to find that cure. It takes a lot of work. Few people, even people very involved in the HPS community, truly appreciate how much work it takes. The world is full of c...

Evidently timeliness is not one of my New Year’s resolutions since it is nearly half way through February and I’m just now posting this blog entry! Perhaps a better resolution for me is to not beat myself up so much about all of the things I can’t do. That’s getting to be a big one! Honestly, 2016 didn’t come in with a bang. Rather it came in with a sniffle, cough, headache etc. I’ll blog more about that when I do a health update. I didn’t do so great with my 2015 resolutions. My goal was to paint 12 paintings. Well, I did three. Part of the problem is that my stamina just isn’t what it once was. I feel okay, but the number of productive hours in the average day is shrinking. I do the most urgent things first, and there isn’t always anything left for the things I enjoy or the things that just make me happy. That is not a complaint, however. We have to make choices about how to spend our time, and while I’d love to do the things I just purely enjoy, I do feel like the work I am doing in...