Living Well with a Bad Diagnosis - Lung Disease

Wednesday, January 25, 2017


I fell into bed last night and really don't remember much afterward. It was one heck of a day. We were able to arrive on time to the beautiful setting right on the inner waterway of the city for the retreat for members of our university hospital's 10 patient advisory boards. There were 70 people in attendance.

The bigwigs made their welcoming statements then the work began. They explained the larger overarching goals with how they intend to attack the problems. We were made to feel that we are a very important part of that process as the patient experience drives so much of what they do. Lots and lots of charts and flow charts and slides on the screen was jammed with information giving us the bigger picture.


I need to mention the potato chips. Homemade. Salty. I fell in love.

After lunch, we talked about more specifics and actually participated in an interesting exercise. Then, a very well done short video was shown and we were cut loose.

This was Michael's first formal retreat. He loved every minute. I felt overwhelmed with the large amount of data thrown at us but he took it all in and reduced it to a simpler format in his head. The man amazes me.

We hit the house, I got dinner in the oven while making hard-boiled eggs. Pots were popping!  Dinner? Done. Eggs a Different Way for Michael's breakfast for the next few days? Done. After a quick comb through my hair, I went across the street to Leslie's house for an Irish Fiddling rehearsal for our Friday night gig.

I was done. Cooked. Fried.

Today, Michael needs to write about a car he worked on many years ago as the person was quite famous, died of cancer and the writer wants more of the details about the car. We are going to sit down and begin the process, have him dictate to me then I will go through and edit it with him. It is only going to be a chapter of the book.

Then, there is an orchestra rehearsal tonight as the concert is coming right up - February 4th. I am so not ready!

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