Re: {Erella's Brain Trust} Digest for erellas-brain-trust@googlegroups.com - 1 Message in 1 Topic

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Mylene Botbol-Baum

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Nov 13, 2011, 3:04:22 AM11/13/11

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You are brilliant Erella , of course you are the best expert of your illness, and doctors know it when they are clever! there was a study in the Lancet a few years ago showing that when the doctor allowed more than one minute and twenty seconds to his patient to explain why he was coming to see him the errors in diagnostic dropped dramatically! they should pay you for this or you should write a book (illustrated?) it is a healing thing for other patients to dare trust themselves!
I would love to see your power point and show it to my students, I am giving a seminar on gender handicap and capability ....
much love!
mylene
Le 13/11/11 03:52, erellas-b...@googlegroups.com a écrit :

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11/11/11 remembrances all around. [1 Update]

11/11/11 remembrances all around.

Erella Ganon <w...@erella.com> Nov 12 04:15PM -0500

Hello friends,

Lots of craziness going on around here.
(the good kind)

11/11/11 -there hasn't been so much excitement about a date- since 10/10/10. My birthday once fell on the day after 6/6/6.
I guess 12/12/12 will be the last one.

I have to tell you about the wildest thing.
My mom lives in a kind bewildered wonderment in a home with Alzheimer's. When people say she's suffering from this disease, I correct them and say that it is my sister Monique and I that suffer from Alzheimer's.

Regardless, her eyeglasses have gone missing in the otherwise excellent long-term care facility that she lives in. The prospect of testing her eyes now that she no longer communicates was too problematic to consider.

I decided to venture into a Wal-mart store, which is where she had her last eyeglass prescription filled. I am not a big fan of wal-marts, in general even though it is the closest big store to where I live. I was thrilled they had the After I selected her glasses, I started a nice cheerful "hello, nice day today" kind of conversation with the lady that was giving out free samples of chewing gum. She told me that we had spoken before. I said it was possible. I live in the area and asked if she does too.
She said that the last time she met me was in 1994 or 1995 in South Carolina.
I was totally shocked.
She said I was with a tall red haired man and a baby. What!?

Sure enough. It is true.
I was visiting a friend in Hilton Head Island, South Carolina in June of 1994 with baby Celeste and her father.
All I knew about her was her name, Patricia, which I just read on a tag.

She told me that she lives in Etobicoke and was in Hilton Head looking after her dying mom at the time.
While she was there, she picked up some shifts giving out free samples at the wal-mart store. I came by and we talked briefly.
She said she has a good memory. Uh -- yeah!!!

I told Patricia she should consider a career change.
Private investigator, journalist, spy... but she said she really loves giving out samples in the Wal-mart stores.
It was very flattering that she remembered me after all these years. Made my day.

I'm on the 40mg a day of the drug I was trying to wean from. I got down as far as 25 mg but that nearly killed me.
I'm still not stable with this and am working on altering different aspects of my diet to make me feeel stronger. I have good days though.

I'm learning that my activities in and out of the various hospitals, has been informative and has value. I am awake and not a zombie.

Who knew?! I have become an expert on my own care. That is one thing I have learned. Some people don't want to be part of the conversation. I get it. I realize that when we become more engaged, it is easier for a better outcome.

Lately, I have been attending various medical conferences and inviting the doctors, educators and policy makers learn my perspective about The Patient Experience.
I also gave a slide show at a conference through Creative Sprit about disability and arts which was extremely inspiring for all involved. I think I really made a difference and it was incredibly rewarding to do it.

I'm learning about how valuable my experience is. Sure it is important to me, but I notice things that could possibly improve life for other people.

I'm also learning about what doesn't work in our system.
It doesn't make sense to me to complain to a risk obsessed hospital about a hospital
and expect change in policy.

It seems Patient Experience has become a kind of buzz word.
The policy makers and hospital executives are all wanting info about how to include that voice in what they're doing.
Bravo. I expect that there are profit motives in part of what drives this curiosity but I am willing to accept their interest with open arms and mind.

At one of the conferences I met a fabulous doctor / educator and related on a myriad of points from opposite sides of a line but with the same goal or ideals. It was exciting.
He teaches at Harvard Medical School and keeps up a practice too. I love his enthusiasm for accepting technology and his refreshing willingness to be challenged.
We connected entirely and now we follow one another on FB and twitter. How cool is that?

He's totally engaged with his students and patients.
When he finishes seeing a patient, he goes over his notes with them and emails a copy to that patient so they can keep track of what is being discussed. What a simple way to make things that may be daunting, clear.

He was appalled to hear that in Ontario we have to go to our doctor to ask for our test results.
Of course, OHIP pays for the visits.
He wants us to make medical records accessible to the patients.

A woman at the same conference said that Sunnybrook Hospital is trying out a system like this. They used to have a 21 day "waiting period" between when we have our test results in the system and when the patient is allowed to read them and was proud to say they've changed it to a 14 day waiting period. Why is there a wait at all?
I really don't understand.
Dr Daniel Sands said that people always claim privacy or security reasons for why they keep our records from us. He said we do fine with Paypal, stock trading and ATM on line so we should be able to manage something like our blood tests.

It is very exciting.
There is a lot going on right now.
It frustrates me that I am not as strong and able as I want to be but I can see that I am making a difference all over the place. That knowledge propels me forward and even gives me energy when I expect nothing.

A new development (-actually two of them ) are being cooked and negotiated.
I expect to have some good news for you my dear supporters in the near future.

I feel so lucky, sometimes I think I will explode.

Life is good. I have the best kind of abundance in my world and it flows with remarkable energy.
I love it.

I send you my love!

Erella

PS. Brilliant writer, author, Sheila Heti did an article about the Mad Hatter and interviewed me last week for a short quote. This piece might make you laugh. It is really funny because this kind of thing could never exist now.
http://www.thegridto.com/city/places/down-the-rabbit-hole/

Here's a photo of my grandmother that I just found, scanned and cleaned up.
I love it.
Hope you do too.

Here's an image from the summer that I forgot to send to you.

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We put the doc about us up online. Here it is if you'd like to watch it.
www.tinyurl.com/erelladoc