Thanks so much

[Guest guest]

Hi Everyone -

I'm a new member of this group, and still figuring a lot of things out, but I

wanted to let you know how much I appreciate the fact that YOU are there. The

warmth, honesty, compassion, humor and grace really come through the Internet

and into my home.

I recently had the chance to thank and honor the nurses who took care of me when

I became ill. A local TV station has a " Pay It Forward " feature in which the

station gives out money to someone who wants to give it to someone else who

means a lot to them. Going back to the Bone Marrow Transplant Center on my own

two feet, instead of on a gurney, was wonderful. I wanted to share this

experience with you through these links.

http://www.valleyprblog.com/people/pat-elliott-pays-it-forward-on-kpho5/

http://www.kpho.com/video/22001653/index.html

Happy Holidays, and best wishes for the new year.

Pat Elliott

Phoenix, Arizona

[Guest guest]

Congratulations, ! I know the Bar is no small feat to accomplish

under the best of circumstances. That's terrific that you've now gotten

through both the Bar and the MPRE.

I think I may have seen Lesser on Oprah, and I've browsed

through her book. I've had the book on my mental reading list ever

since.

I'm so sorry to hear that you've had a new injury -- but just delighted

to know that you are apparently getting some decent pain relief at last.

Best,

>

> Dear ,

>

> I hope that you are well.

>

> I appreciate all the work you do for us.

>

> I wanted to share that was able to take the bar with accommodations.

Both the bar and the MPRE granted me ADA accommodations. I remember

taking these tests in an able body. I thought about all of us in our

bodies and the struggles we've endured and I felt very grateful to be

able to do take the tests. I had a new injury and a severe one and I

showed up in spite of that. I have learned to surrender and to trust and

to just show up.

>

> I have a fantastic doctor who has helped guide me through these past

few years where I almost died a few times. NOw I finally have some pain

management.

>

> I read what you write. I hope you also can find time to read what I

write. I 'd be happy to help the list in any way I could. Just let me

know what you need done.

>

> I wish you a happy spring and thank you again for all your hard work

and dedication.

>

> One person you might want to contact is Lesser at the Omega

institute. It's a world famous organization in the Hudson Valley

dedicated to alternative and complementary healing and world peace and

those kinds of things. She is connected to Oprah's radio network and she

might take some interest in this. Her email is elizabethlesser@...

> She wrote a wonderful book called Broken Open about trauma and the

spiritual path.

>

> I hope to hear back from you.

>

> Kindest Regards,

>

>

> ________________________________

> From: elizabethrgonzalez@...

>

> Sent: Wed, March 10, 2010 10:53:11 AM

> Subject: DR. OZ MEDIA CAMPAIGN -- IMPORTANT REMINDER!

>

>

>

>

> Join our media campaign and help spread the word! Write to Dr. Oz

today to let him know about how many hundreds of thousands of

flatbackers could benefit from even a brief segment on his TV show

devoted to flatback syndrome. It's very easy to drop a line to Dr. Oz:

Just go to http://www.doctoroz.com/plugger?tid=2397 and input your

message along with the requested information such as your name.

>

> The program requests that you use this method to contact them. If for

some reason you prefer not to email them, however, an address you can

use for snail mail is: Dr. Oz Show, NBC Studios, 30 Rockefeller Plaza,

Studio 6A, New York, NY 10112

>

> Please be sure to send us a copy of your letter to Dr. Oz for our

archives. (If for any reason you prefer to keep your letter private,

this is of course not mandatory -- but please write that letter!)

>

> And by the way: If you have a friend or family member who has been

with you through this flatback ordeal -- if you have a great doctor in

any specialty who has contributed to your care -- why not ask that

person to drop Dr. Oz a line as well?

>

> Are you still undecided? Do you question whether your own contribution

will be necessary or helpful? Do you figure Dr. Oz will get the message

from others? If so, please consider: In a campaign like this one, the

volume of mail -- the number of letters received -- is probably the

single most important factor in convincing a production team that there

is sufficient interest out there to justify a broadcast on a given

topic, such as flatback syndrome.

>

> Every single person counts.

>

> Every single letter counts.

>

> You don't need to write anything long or elegant or eloquent. In

fact, shorter is probably better. Even a sentence or two is sufficient

to let Dr. Oz know that we want and need him to get the word out about

flatback syndrome.

>

> This effort needs the support and participation of every single Feisty

member who has suffered with flatback syndrome. It is you who will

determine whether we succeed or fail.

>

> What if you were just starting out with flatback and had no idea where

to turn? What if you were being dismissed by doctors who said you had " a

beautiful fusion " and there was no basis for your spine-related

symptoms? What if you finally found a doctor who thought he could help

you -- a longtime member of the Scoliosis Research Society -- but he

proposed to do a massive revision procedure which he was still trying to

master, having attempted it only once or twice before? What if you knew

of no other doctors who might have more experience or skill? What if you

called your original scoliosis surgeon's office, only to be told that he

refused to see you? What If you then asked for copies of your original

X-rays and were told they had been permanently mislaid or lost in a

fictitious fire in someone's garage? What if your scoliosis doctor did

see you, only to assure you once again that you were doing great and

your symptoms were groundless? What if he

> admitted that you did have a little bit of a flatback condition,

which was only to be expected as a side effect of your disk disease,

then sent you off for another course of PT?

>

> Way too many of us have been there. Maybe you yourself have been

there. If so, do you remember the confusion, the worsening pain and

disability, the sheer desperation of not knowing what was wrong with you

or where you would ever find help?

>

> We have no idea how many more desperate women and men with flatback

syndrome are lost in that same bleak and frightening wilderness right

now. We are happy for those who have found their way to this or other

online groups. But please consider: The membership of this group, the

Feisty Forum, is 733. The membership of Flatback-Revised is 614. Some

additional flatbackers participate in the National Scoliosis Forum's

revision-surgery forum or in groups such as Scoliosis Treatment.

>

> Even if there were no overlap -- if everyone belonged to only one of

these groups -- the total number of participants would constitute just

" the tip of the iceberg. " We know this because of the " biggie statistic "

we got from Joe O'Brien at the Scoliosis Research Society: The SRS

projects that some one million people with Harrington rods are going to

need flatback revision surgery. That's 1 million. (Moreover, the

projected number is likely to grow as more patients with Luque

instrumentation or other types of hardware are diagnosed with flatback

syndrome.)

>

> Did you know that some Feisty Forum members consulted as many as TEN

(10) doctors before they were taken seriously or offered appropriate and

definitive surgical help?

>

> Did you know that a fair number of Feisty members were seriously

considering suicide at the time they found their way to our group?

>

> As long as the media continue to ignore this virtual epidemic-- as

long as MDs remain ignorant of the problem -- as long as facts and

answers are available only to the relative handful of flatbackers who

discover one of the online groups -- this shameful situation will only

continue.

>

> Please help bring flatback syndrome out of the shadows and into the

light of public knowledge! Help those untold numbers of deformed,

disabled, hurting people -- people very much like us -- put a name to

their malady at last and learn that help is available after all.

>

> Let's do our utmost to get this story out at last.

>

> Let's spread the news.

>

> Let's save some lives.

>

>

>