Living on the frontlines

Sea lions by Fisherman's Warf.

San Francisco was a bit chilly. One evening we were walking around and Ashley and Karen were freezing. We walked by a t-shirt vendor with really cheap sweat shirts, so to stay warm, they each bought one.

You'll have to forgive me for not blogging tonight. If I get a moment, I'll try to throw up some more pictures. This evening I'm working on a little snag that has cropped up in regard to the drug trial. It seems United Airlines and the Transportation Security Administration representatives at Dulles Airport are requiring our patients coming and going from Puerto Rico (in other words most of them) to have a U.S. passport. According to my sources at the State Department and the Department of Homeland Security, they shouldn't need to have a passport. After all, Puerto Rico is a U.S. territory and Puerto Ricans are American citizens. But, it seems the counter staff and the guys standing at security missed that part in American history class. So, I'm in the process of writing to both of these entities (after many phone calls today trying to figure out how to file a complaint). I'm sure we'll get it taken care of. But, the problem is occupying my time right now. P...

Pictured here is Judy Simpson, President of the Pulmonary Hypertension Association and Past President of PAR. She served as MC for this event. Our first meeting at the American Thoracic Society (after we’d spent the morning eating a very fattening breakfast that certainly was not Weight Watcher’s friendly, but ohhh sooo good) was a first-time event for the society. PAR – the Public Advisory Roundtable – has decided it wants to reach out to the general public during ATS. I wasn’t in on the planning of this event, so I’m not 100 percent certain of all the details, but essentially it was open to lung patients of all stripes to get together and network. About 60 patients from the greater San Francisco area turned out to hear a mix of patient and doctor speakers. Afterwards there was a fofo food naushing and networking session. There was one doctor who gave an especially phenomenal talk. I’d love to give him credit, but I can’t even begin to spell his name correctly and I can’t find it writ...

It seems I have a new disorder to add to my collection. Before I went to ATS, regular readers may remember, my thyroid numbers were off at the NIH, and that my local doc. had run some follow up tests here at home. I called today to check on the results and it seems the local doc. concurs with Kevin. They believe I have something called Hashimoto’s Syndrome. It’s actually not that rare, does run in my family and is very easily treated. I’ll start taking a thyroid hormone at a low dose at first to see if things improve. I was elated at the news, to be honest. Kevin at NIH (and pretty much everyone else) has been on my case about losing weight for some time, but especially since I entered the drug trial. And I have tried. Of all the diets I’ve tried, I’ve found Weight Watchers to be the easiest to comply with. I like the points system. But, even when I’m on my best behavior, carefully logging everything, exercising etc I never lose anything. In fact, I gain. With all of my other health is...

Of course we couldn't go to San Francisco without riding a street car! We rode the street car to Lombard Street so that we could walk down the street instead of up! Grin! But, it seemed as though we had to wait forever!