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September 14, 2014

My first dessert since Steven’s last visit. Nectarine pie ala mode for me. Flourless chocolate cake w whipped cream @ vanilla bean ice cream. Ambulance on the way.

My first dessert since Steven’s last visit. Nectarine pie ala mode for me. Flourless chocolate cake w whipped cream @ vanilla bean ice cream. Ambulance on the way.

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September 13, 2014

Adventures with Zippy

Continuing to enjoy a new found sense of freedom with my scooter Zippy I decided to turn a routine commute into a small act of courage. I had a jam packed day of work and meetings in SF. If I got in trouble, I mused I could always call AAA for a tow.

So Wednesday I rode Zippy 3/4 of a mile from home to Rockridge BART, crossed the Bay to Glen Park station, scooted up the hill to my cottages seamlessly.

Oakland Aesthetics Arborists were there to prune the big stuff and I the smaller. I still am a “pediatreecian” after all. At a point where I could leave for 30 minutes, my landscape contractor picked me up to visit a nearby job site and review installation details. He returned me to Chenery in time to meet with the painter—front cottage needs refreshing now its empty after 8 years. Several hours later we returned the garden to top form and the view from the deck was restored

So far the day was moving like clockwork.

Down the hill to a delicious lunch at neighborhood taqueria where they remembered me and I bumped into a few neighbors.

Back to BART. But things quickly derailed. BART was broken down. I sat on the platform 45 minutes. The crowd surged, busy commute time ensued. Fatigue slammed me. When eventually the packed train arrived I didn’t understand how to best position myself. Rather than doing so for exiting, I mis thought and tried to make myself flat against the wall.

Philosophical lesson: Always expect the unexpected. How could I forget with such incredibly rare disease?

Tactical lesson: Always envision the way out. This is my approach with everything else…

Take away: Give myself credit. Remember I live to tell the tale. It was a small act of courage, a big adventure and a first time. When/if I do this in the future, remember the above.

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August 29, 2014

Maiden voyage in chariot to Trader Joes after getting bike bell. Ring-ring.

Maiden voyage in chariot to Trader Joes after getting bike bell. Ring-ring.

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August 26, 2014

Dinner, DNA, Discovery

Harriet and Chuck came to dinner last Sunday. I met Chuck on my first trip to Dallas when I began the clinical trial in February 2012. We keep in touch with email and our monthly phone chats. They live in Oergon.

Chuck’s lost many family members to the disease. I believe his mom, dad, cousin, aunt all died from APBD. Harriet is Chuck’s wife, a brilliant woman with a heart larger than a harvest moon. She organizes our monthly chat group and facilitates it.

From the moment Harriet and Chuck walked in the door we felt close. After all we are integral to a most elite tribe, that of APBD. With billions in the world we are mere hundreds. An orphan disease is one with 1,500 or less, we are so orphan we aren’t even born. 

Would we have wished for membership? No. But as we laughed and shared anecdotes, ever-shining Harriet pointed out, “if not for APBD we wouldn’t be here enjoying each other.” 

There is no room for pretense, disingenuousness, formality. It’s cut to the chase: pass the tomatoes w parsley/feta; I fell the other day, more lentil salad, my bladder is a little better/no more self-cathing, yes lemon in my sparkling water please. 

Given our shared mutation, Chuck and I may be related. All of us from Ashkenazi origins with this mutation most probably are. I’m getting a DNA analysis. 

As we were hugging goodbye Harriet said that we should have an APBD road trip. I burst out laughing visualizing the circus—we might make it to the highway by dusk. “I have to eat something.”  “I’m just gonna nap for 25 minutes.” “Sorry, have to pee again, hope it won’t take 20 minutes this time.” “Who just fell?” 

Btw: disease with even worse name than APBD: “…leishmaniasis… difficult name that nobody remembers…not snappy, like sleeping sickness or river blindness.” Or…
From Dr. Dillon in today’s NYT Science Section.

Dinner, DNA, Discovery

Harriet and Chuck came to dinner last Sunday. I met Chuck on my first trip to Dallas when I began the clinical trial in February 2012. We keep in touch with email and our monthly phone chats. They live in Oergon.

Chuck’s lost many family members to the disease. I believe his mom, dad, cousin, aunt all died from APBD. Harriet is Chuck’s wife, a brilliant woman with a heart larger than a harvest moon. She organizes our monthly chat group and facilitates it.

From the moment Harriet and Chuck walked in the door we felt close. After all we are integral to a most elite tribe, that of APBD. With billions in the world we are mere hundreds. An orphan disease is one with 1,500 or less, we are so orphan we aren’t even born. Would we have wished for membership? No. But as we laughed and shared anecdotes, ever-shining Harriet pointed out, “if not for APBD we wouldn’t be here enjoying each other.” There is no room for pretense, disingenuousness, formality. It’s cut to the chase: pass the tomatoes w parsley/feta; I fell the other day, more lentil salad, my bladder is a little better/no more self-cathing, yes lemon in my sparkling water please.

Given our shared mutation, Chuck and I may be related. All of us from Ashkenazi origins with this mutation most probably are. I’m getting a DNA analysis. As we were hugging goodbye Harriet said that we should have an APBD road trip. I burst out laughing visualizing the circus—we might make it to the highway by dusk. “I have to eat something.” “I’m just gonna nap for 25 minutes.” “Sorry, have to pee again, hope it won’t take 20 minutes this time.” “Who just fell?”

Btw: disease with even worse name than APBD: “…leishmaniasis… difficult name that nobody remembers…not snappy, like sleeping sickness or river blindness.” Or…
From Dr. Dillon in today’s NYT Science Section.

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August 26, 2014

The Zippy Almanac: Out & About in the N’hood

Moki and I explore. Treasures are close at hand from fecund explosive expressions to tidy thoughtful entries. Colors cascade, surprise. Neighbors meet and greet. Along the way an abandoned mirror offers Mr M a chance to check out his fur. Lookin’ fine. I feel the door to the world opening. Thanks little Zippy.

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August 20, 2014

The Best Cure for a Lousy Disease: Wonderful Friends

I said when I moved here that I wanted to fill this house up with love. Every time friends visit and we laugh in the garden or share tales at the table it gets fuller and fuller. Here’s to my lovely home splitting some seams.

The Best Cure for a Lousy Disease: Wonderful Friends

I said when I moved here that I wanted to fill this house up with love. Every time friends visit and we laugh in the garden or share tales at the table it gets fuller and fuller. Here’s to my lovely home splitting some seams.

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August 19, 2014

Meet Zippy the Scooter.

So this how I’ll go for longer walks with my dog Moki as APBD progresses.

Besides running over Moki’s foot, closing the garage door on Zippy and getting stuck with one wheel off the ground, all went exceptionally well in the test drive on my block.

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August 13, 2014

They say you can’t make an omelette without breaking a few eggs. On the left are the “eggs.” On the right the “omelette.” The pile on the left is one fourth of the total winnowing, sorting, editing of 17 years of clients’ design projects. Designs of those who have moved, sold their house, sold their business. There were the sketches, ideas, processes, saved extra copies. Now streamlined to current and past projects that somehow I am still involved with.

What a different approach than a regular body person’s. After my friend Lindsay moved the shelving from the kitchen to the studio the tubes and flats were still on one side of the house and needed to relocate to the other. So I set up a relay system from room to room with my granny/shopping carts, wheeled stool, rolling chairs. It was an honest day’s work and though it wore me out, balm for my Virgo soul.

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August 3, 2014

Happy Birthday Mom
August 3, 2014
You’d be 91 today. Here’s to chocolate cake, lions and lavender. I love you.

Happy Birthday Mom
August 3, 2014

You’d be 91 today. Here’s to chocolate cake, lions and lavender. I love you.
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August 3, 2014

Farm to Table

I find one of the best balms for bumbling body and sagging soul is a delicious meal shared. So last night Andrea, Tom and I cooked, whirled and walked to the garden with the freshest and most delicious summer bounty under the setting sun. Cheeses, olives, gazpacho, pesto sautéed summer squashes, super salad and Sauvignon Blanc all harvested and consumed lovingly. A bounty in true farm to table spirit.

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