Living on the frontlines

Last week we added two new HPSers to the patient registry. I have been so busy I am just now posting it. So, we are at 83 to go on this year's Hundred People Search. Yes, that is behind where we usually are, but we usually pick up around 40 new people when we do the conference in Puerto Rico. This year that didn't happen. But, we are going to Puerto Rico in March (more to come on that.) I should say the Network is going as I'm will not be going. I hope I will be moving. 

If you follow me on facebook, you've already seen these. Grin - just had to add to the archive! Grin! 

Okay, so have you been wondering what is happening with my plans to move? Me too! Grin! So, here’s the current plan, but keep in mind originally I was trying to move by July, so the plan changes. I should be all cleared to move from a medical standpoint by mid-February. I have found an apartment complex that seems to be an answer to all of my prayers – now if a unit will just become available when I need it! The complex is within walking distance of Ryan and Sara’s house, so it would be so much easier for them to come over and help when I need it. That is a HUGE plus! It is also a Fin friendly place so that won’t be a problem. It is also close to a grocery store, a CVS, a Petco, a Starbucks and a Thai restaurant. What else could a girl want? It is not close to the metro, but it is right on a bus line that goes to the metro. Since I am not doing a daily commute, I think right now being close to Ryan’s house and things like the pharmacy and grocery are more important. The trick, and thu...

We've added another HPSer to the patient registry. We are now at 85 to go this year. That is way behind where we usually are, but we have focused more on science this year and less on outreach. It is important to get the word out about HPS though, especially now with a new drug in the picture. 

Tomorrow is a check up day so hopefully I will have more of an update to share. In the meantime, here's another Finley video clip! 

I’ve had friends with Hermansky-Pudlak Syndrome, or other lung diseases, for 14 years now. Over the years friends that found themselves on oxygen have told me stories about overhearing comments in public, or even from other friends, about them. The comments were along the lines of - they’re on oxygen because they were a smoker. Recently, it happened to me, not once but twice, in the same week. I’m not sure how to feel about it. The first time was at the grocery store. I was standing in line, and a mother said to her 12ish looking daughter, “See that lady. That’s what happens if you smoke.” A week later I was in the car with friends complaining about my latest saga with the oxygen company. One of the friends remarked, “I’m glad I’m not a smoker.” They are two very different comments with lots of different implications. The fact is, however, when many people see someone on oxygen, they often assume it is “their fault.” Living with chronic or life limiting illness is a minefield of guilt ...