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October 20, 2014

23andme at 59andus

Suspicious that we are distant cousins, on our last APBD phone chat the tribe discussed taking a genetic test. I was game. I spent five minutes online reading about the simple process and $100 for my kit from 23and me. It took another five minutes to read the instructions, a little saliva and now my kit is ready to return. I’ll keep you posted when the results come back in around six weeks.

23andme at 59andus

Suspicious that we are distant cousins, on our last APBD phone chat the tribe discussed taking a genetic test. I was game. I spent five minutes online reading about the simple process and $100 for my kit from 23and me. It took another five minutes to read the instructions, a little saliva and now my kit is ready to return. I’ll keep you posted when the results come back in around six weeks.

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October 17, 2014

Actually BAM

Yesterday BAM down. Hard. Fast. Frightening. Just the slightest brush from one foot to the tip of the other and I was smushed on my kitchen floor like a dropped egg. Anyhow this chicken got up, determined no broken bones and limped forth. I’m rather sore today so off for a swim and a soak. Btw: I was wearing my Alert. Mostly I can coexist w APBD but surprise brushes with disaster such as these make me actively despise the monster.

And always have Arnica gel and pellets as well as bag of frozen veggies on hand. Up with the anointed injured limb glacé.

Actually BAM

Yesterday BAM down. Hard. Fast. Frightening. Just the slightest brush from one foot to the tip of the other and I was smushed on my kitchen floor like a dropped egg. Anyhow this chicken got up, determined no broken bones and limped forth. I’m rather sore today so off for a swim and a soak. Btw: I was wearing my Alert. Mostly I can coexist w APBD but surprise brushes with disaster such as these make me actively despise the monster.

And always have Arnica gel and pellets as well as bag of frozen veggies on hand. Up with the anointed injured limb glacé.
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October 14, 2014

I’m still smiling from my visit with cousins Laura and Joel this weekend. But life goes on and today i enjoyed lunch w Steven’s dear friends, also my friends now, Neil’s and Gloria visiting from San Clemente and SF. This evening my darling Ariel who I’ve known since before she was born as her mom is one of my dearest friends came over. I’m a regular social butterfly! Just following the doctor’s orders, reducing stressing and increasing happiness. And I swam for 30 minutes to boot.

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October 14, 2014

Evening Thought

In the unluckiness of it I am lucky. What more does a girl need? A good scooter, a nice cup of tea, and just a few hours until home sweet home where a funny dog, a lot of friends, and all manner of good things await.

Evening Thought

In the unluckiness of it I am lucky. What more does a girl need? A good scooter, a nice cup of tea, and just a few hours until home sweet home where a funny dog, a lot of friends, and all manner of good things await.

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October 8, 2014

My Doctor is a Rock Star

Jam-packed slap me down go-go-go-go busy day of back-to-back appointments. So much so that at one point between the exertion and 90 degree heat I was dizzy enough to almost faint for a half hour. Dallas ADA transportation stinks. The van flaked and rather than having Zippy to make things flow, Mary had to come get me from the hotel in her car so I used the poles. Not that I am unaccustomed to the poles but getting from one building to the next for our tight schedule involved extra efforts. We started with the six-minute walking test where I did slightly better than last visit. Then labs and a tiny bite to eat. Next Gait Analysis where I surprised myself doing it without the poles— back and forth ten times along the track. Then standing in place with legs apart eyes open, then eyes shut twice and then with legs together. I didn’t even bother with legs together and eyes shut being a bit dizzy still. From there to Dr Schiffmann where he proved he is truly a rock star. If the good doctor is lead guitar, Mary—seated to the right of me as I sport the electrodes—is rhythm guitar. Wait no, she is the conductor. Mary makes the different instruments and players in this clinical trial into a symphony. We had a great hour + meeting. Dr Schiffmann commended my bright spirit, answered questions, asked many also. There were the physical tests, stair climbing, up from a chair, up from the ground, walk, walk toe-to- toe, on toes, on heels and on and I am pooped. ADA van pick up at 6:40 in the morning so up at 5:20 to have tea, pack, have breakfast and hit the road. Home by noon and off to the job site. Then a swim and I’m not moving except to hug Moki who gets home at seven.

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October 8, 2014

Maiden Voyage

As my APBD advances so must my approaches. Could travel with a sense of freedom be possible? Only one way to find out: buck up my courage and see. I’ve been thinking Zippy could hold a key and put my hunch to the punch for October’s Dallas clinical trial check-in. Hours of research and calls later the necessary arrangements were in place. Then the day came and off we went. From home into the ADA van to South West Airlines sky captain’s booth where the kind captain took the photo, on to Pete’s for tea, to the ladies room—without getting help, whenever I wanted, to the door of the plane where Zippy was checked to fly with the baby strollers, all went flawlessly. Five minutes after touch down in Dallas Zippy was rolled up. At baggage claim a nice Texan grabbed my checked bag from the carousel and I rolled with it to the waiting ADA van. Next thing I was checking in at the hotel and soon enough was in the pool swimming laps through the cold water on a hot humid afternoon. I felt encouraged, a door opened, and having started at 4:30 that morning was ready for a nap.

Maiden Voyage

As my APBD advances so must my approaches. Could travel with a sense of freedom be possible? Only one way to find out: buck up my courage and see. I’ve been thinking Zippy could hold a key and put my hunch to the punch for October’s Dallas clinical trial check-in. Hours of research and calls later the necessary arrangements were in place. Then the day came and off we went. From home into the ADA van to South West Airlines sky captain’s booth where the kind captain took the photo, on to Pete’s for tea, to the ladies room—without getting help, whenever I wanted, to the door of the plane where Zippy was checked to fly with the baby strollers, all went flawlessly. Five minutes after touch down in Dallas Zippy was rolled up. At baggage claim a nice Texan grabbed my checked bag from the carousel and I rolled with it to the waiting ADA van. Next thing I was checking in at the hotel and soon enough was in the pool swimming laps through the cold water on a hot humid afternoon. I felt encouraged, a door opened, and having started at 4:30 that morning was ready for a nap.

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September 26, 2014

Sweet September

What a sweet month full of friends, family, events, understandings. The doctors say stress is even more detrimental for APBD stability; happiness best balm. I am well coated, bursting happy, standing as firmly and tall as possible.

It started in August with leg one of Anne and Geoff from NZ’s visit and their return a few weeks later in September. Then both brother’s visits— Steven then Duffy. I spent a day in retreat with my dharma teacher Sylvia Boorstein at Chochmat Halev, had a wonderful garden birthday party, and yes another dessert. A few days later pre-Rosh Hashanah gathering. And yesterday a trip to the big box store for a big box: Duff bought me a fancy, giant television. I’ve watched on my iPad since moving here. Time to swap the reading for the distance glasses.

Touring Berkeley—actually knowing my way around, hanging in for good conversations, swimming up on the hill, this was the best birthday month, start of New Year, end of 50’s imaginable. Though sad to see Duff off this morning at Amtrak, as the train chugged out of the station I am cheered cause I know life with a difficult disease can be enjoyed.

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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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