Friday, February 25, 2022

Friday Five, Spring Isn't Here Yet

 Winter is drawing to a close. But I’m not quite ready for spring, even though it’s one of my favorite seasons. Here’s why I’m trying to live in the last bits of winter.

 1. I refuse to think about all the weeds the last snowfalls germinated. It will be thousands. Tens of thousands. Or, given I spent the late fall working on the kitchen reno, instead of weeding…hundreds of thousands.

I prefer to think about the view from my office as snow falls.

2. I refuse to think the Canada geese will be mating soon. They screech all night long, waking me up at midnight, 1 am, 2 am, 3 am… You get the picture. Why can’t they fly home to Canada for mating season—after all, they are Canada geese.

I prefer to think about them walking on the frozen pond, very peeved they can’t swim. 

3. I refuse to think that I will soon be changing clothes five times a day.

         1. Early morning: undershirt, shirt, jeans, wool sweater.

         2. Morning: remove wool sweater.

         3. Noon: remove undershirt.

         4. Afternoon: exchange a long-sleeved shirt for short-sleeved.

         5. Late afternoon: shorts and t-shirt.

         6. Dinner: jeans, undershirt, long sleeves, and wool sweater.

         7. Bedtime: fleece jammies, undershirt, heating pad.

Seven times a day... I’m going back to bed and pulling the covers over my head. I don't even want to think about the time change.

4. I refuse to think about kitchen reno, part five. Painting the upper cabinets. I really, really want to do this—to finish part five of a six-step reno. But that means a disaster, stench, and exhaustion.

I prefer to think about how much I love what we’ve already done. 

But the upper cabinets are pretty yellowed...

5. I refuse to think about…too late. I saw the first flowers. SPRING is here!!


A hellebore

Wednesday, February 16, 2022

HEDGE Study, Ehlers-Danlos Syndrome

Early this morning, I had my blood drawn. And aside from the fact that I’m a difficult stick because my veins collapse, this shouldn’t be something to write a blog post over. But this is a big deal.

 I was invited by the Ehlers-Danlos Society to participate in the HEDGE study. Its goal is to find the genetic markers for the type of Ehlers-Danlos Syndrome I have. They will do a whole-genome sequencing study of 1,000 people from 86 different countries who have hEDS.

I’m very thankful to everyone who has donated time, money, and blood to run this study. (It’s hard to find research money for rare diseases.) My hope is this study will make diagnosis quicker and easier and raise awareness in the medical community, so that no one else will have to wait 50+ years for a diagnosis. Go, zebras!