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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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July 30, 2014

Public Humiliation, The Worst of Both Worlds, Just Rewards

To live with and write about this disease is to accept public humiliation. The other day my brother said, “I wouldn’t write about something personal like that on a blog.” Well any regular person wouldn’t but remember I’m not regular anymore. I’m an APBD tribeswoman daily facing high hurdles with limited jumping skills. I have have publicly peed my pants, fallen, fainted, farted. APBD is embarrassing. The choice I have made is to accept it, face it, embrace it and see how I can most gracefully survive it and even flourish. I hope to offer insights to fellow travelers, friends and family. Neither the disease nor the blog are for the squeamish.

With that said here’s the newest:
 self catheterization. I thought I would die before going there but here I am and it isn’t so bad actually. What was so bad were the ongoing UTIs and getting to the new gnobladder specialist at Oakland Kaiser. They sent me to three wrong buildings. I do not exaggerate, I walked close to a mile by the time I arrived at Dr M’s office. By the third parking experience the garage man took one look at me and personally escorted me to her office. Oh and look at the silver lining in this tarnished tale, human kindness. The doctor young, smart, generous with her time was worth the journey. Compassionately she said that I have the worst of both worlds. UAB (under active bladder) means I can’t pee when I want, yet still do I pee when I don’t want. There’s the public humiliation again. The deterioration of brain to bladder and damage to these nerves are definitely worst aspects of the disease. If the protocol offers relief I’m on it. 

After three hours I left and headed straight for a swim on a glorious evening. Shower, home for Moki and off to Mrs Dalloway’s bookstore. Jacqueline Winspear was reading from her new novel “The Care and Management of Lies.” I registered for the event months ago. I’m addicted to her “Massie Dobbs” mysteries and gobbled this one up though not part of that series. When Ms Winspear signed my book after commenting what a lovely dog Moki is, I said the new novel cries out for a sequel to which she replied in her perfect British diction, “stay tuned.”

So there you have it, a day in the life with public humiliation, the worst of both worlds and just rewards.

Public Humiliation, The Worst of Both Worlds, Just Rewards

To live with and write about this disease is to accept public humiliation. The other day my brother said, “I wouldn’t write about something personal like that on a blog.” Well any regular person wouldn’t but remember I’m not regular anymore. I’m an APBD tribeswoman daily facing high hurdles with limited jumping skills. I have have publicly peed my pants, fallen, fainted, farted. APBD is embarrassing. The choice I have made is to accept it, face it, embrace it and see how I can most gracefully survive it and even flourish. I hope to offer insights to fellow travelers, friends and family. Neither the disease nor the blog are for the squeamish.

With that said here’s the newest:
 self catheterization. I thought I would die before going there but here I am and it isn’t so bad actually. What was so bad were the ongoing UTIs and getting to the new gnobladder specialist at Oakland Kaiser. They sent me to three wrong buildings. I do not exaggerate, I walked close to a mile by the time I arrived at Dr M’s office. By the third parking experience the garage man took one look at me and personally escorted me to her office. Oh and look at the silver lining in this tarnished tale, human kindness. The doctor young, smart, generous with her time was worth the journey. Compassionately she said that I have the worst of both worlds. UAB (under active bladder) means I can’t pee when I want, yet still do I pee when I don’t want. There’s the public humiliation again. The deterioration of brain to bladder and damage to these nerves are definitely worst aspects of the disease. If the protocol offers relief I’m on it.

After three hours I left and headed straight for a swim on a glorious evening. Shower, home for Moki and off to Mrs Dalloway’s bookstore. Jacqueline Winspear was reading from her new novel “The Care and Management of Lies.” I registered for the event months ago. I’m addicted to her “Massie Dobbs” mysteries and gobbled this one up though not part of that series. When Ms Winspear signed my book after commenting what a lovely dog Moki is, I said the new novel cries out for a sequel to which she replied in her perfect British diction, “stay tuned.”

So there you have it, a day in the life with public humiliation, the worst of both worlds and just rewards.

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July 23, 2014

Joining us for our monthly APBD chat group was the husband of a woman who’s had the disease for 12 years. They live in Israel, near Tel Aviv. It was four in the morning. More frequently than not these days the warning siren of an incoming rocket blasts. That’s the cue to run quickly for the underground shelter. 
Run
Quickly
APBD
A dozen years.
“Sometimes we can’t get there in time,” he said. “But life goes on. Life goes on.”

That is until it doesn’t.

Joining us for our monthly APBD chat group was the husband of a woman who’s had the disease for 12 years. They live in Israel, near Tel Aviv. It was four in the morning. More frequently than not these days the warning siren of an incoming rocket blasts. That’s the cue to run quickly for the underground shelter.
Run
Quickly
APBD
A dozen years.
“Sometimes we can’t get there in time,” he said. “But life goes on. Life goes on.”

That is until it doesn’t.
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