Skip to main content

Posts

Showing posts from June, 2015

Hundred People Search Update

This past week we added three new HPSers to the patient registry. This leaves 88 to go on this year's Hundred People Search. The search for those affected by HPS is more important than ever. Not only is it vital that the bleeding disorder of HPS is accurately diagnosed, but now there is a therapy for the lungs as well. Keep up the outreach everyone. 

Fin's new window

For all the Fin fans out there! Fin loves looking out the window and keeping an eye on everything. Here he is looking out the front of our apartment at the street. It's Fin TV! He's got another window in the back, but it isn't as exciting as the window in the front. 

Apartment hunting

There were a lot of things that came up through this process that I wanted to record, not so much for the vent factor (although I could have used that), but because I wanted to pass along the thoughts to anyone else with HPS that might be looking at the same journey down the road. I grew up as a military kid. In my early adult life I moved every year or two. Since I moved to Danish Village, however, I hadn’t moved for 14 years. I’d lived in Kansas City longer than that. Boy was I out of practice when it came to moving and apartment hunting! Finding an apartment when you are ill, on disability, and moving across the country, is an entirely different animal than what I had done in the past. It wasn’t moving across town. I didn’t really have enough income to impress potential landlords or the promise of a great new job that was sure to provide that impressive and comforting income. Poor Ryan and Sara, my brother and sister-in-law, had to investigate the apartments. I know that was extra w...