posted
lpkayak called as she is trying to get home from the rally before bad weather arrives. Other news events apparently limited national coverage, but she was very pleased with the "short and sweet. . .and right to the point" article by Liz Anderson in The Journal News.
I will try to sumarize some of the points lpkayak made.
1. Thank Liz the reporter for listening and writing the wonderful article. Thank Dr. B. Thank Joel Miller, a politican in NY who spoke so passionately. Joel listened to her 5 years ago and continues to have passion for our cause.
2. Help make this a national story. You can forward the article to your local media. Make posts on other web sites about it, e-mail your friends. The story is so much bigger than the attention it has received so far. Keep the ball rolling.
3. The reporter wants to hear from us. At the end of her article is her name, Liz Anderson and contact information, [email protected] with phone # 914-696-8538. Tell her she was "right on" and "thank you" if you feel that. Tell her a little about your own problems or experience. Make the contact, she is listening and she provided ways to contact her. It will be great if she can do follow up stories.
From talking to lpkayak and reading the posts, I know so much of this is about the families and the children. I know that she felt the calm intensity, the acceptance, and the sense of something magical happening yesterday.
I know that the "magic" includes many who were not able to attend the rally. As we work together, we all can experience the feelings and sense of connection those at the rally experienced.
posted
Yes, the shuttle did pick them up. lpkayak has been struggling with the health problems and it is incredible she could even make the trip.
With the brain fog and everything, she had been determined that she could not talk to the media. She wrote some things down to show reporters if they approached her.
Someone from the media was on the shuttle and wanted to interview her. Her written thoughts didn't work. She was told that this is TV and we need you to talk.
She talked. Interviews continued at the rally and she apparently remembers little of what she said. There is no doubt in my mind that she did good. She wasn't sure why the media wanted to talk to her so much.
For some reason, she even got picked to go with the small group to the building. I don't think they went inside, but it didn't matter. . .it was like things were so perfect yesterday.
She expressed to me that illness and pain has caused her to lose connections with friends and others over the past 40 years. Some of them just did not understand and ended their friendship.
Yesterday, she reconnected with some old friends and made new ones. Dr. B even visited with her and shared something his wife had in common with her. It was such a special day for her. (Me too, even though I couldn't be there.)
I will post again when I hear that she has gotten home ok. She will probably need a couple of weeks to recover from the trip.
posted
Due to the deteriorating weather, lpkayak stopped to stay with someone until the weather inproves and she can go on home.
Posts: 158 | From Ecuador | Registered: Apr 2006
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bettyg
Unregistered
posted
Mo, was kayak 1 of speakers at podium? if yes, which photos is she so we can put a face w/nickname here? thx!
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
No, Betty, she was not one of the speakers at the podium, but she did plenty of speaking out, nonetheless. Bravo, LP!
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Thankyou to all that were able to attend the rally. Unfortunately I was unable to attend. I feel my voice was heard through you. Here is a copy of the email I sent to this reporter.
Thankyou for your story covering the rally protesting the new infectious disease society guidelines on lyme disease. I'm sure you will receive many emails regarding this.
I too have chronic lyme disease and have been treated for several of the co infections associated with lyme disease. I'm one of the lucky ones, I'm doing quite well. I'm able to work full time. In fact I work with the medical establishment as an RN. However, I feel this has only been possible due to years of treatment from a lyme literate MD
I can tell you first hand from a decade of suffering from this disease and a quarter century of working as a health care professional that mainstream medical professionals are almost criminally, misinformed, underinformed, or just too lazy to educate themselves from the reams of literature that is out there.
There is malpractice being committed everyday regarding this disease. There are people not being diagnosed or misdiagnosed everyday. People are being denied insurance coverage based on this report. The frontline Doctors that work with this disease daily were denied input. Dr Wormser can't back his findings up with any data and there is countless documentation that contradict Dr Wormser's report.
I would love to believe Dr Wormser, I would be well now! I wouldn't have to worry about a little stroll in my own backyard causing a debilitating illness. I'm sure political interests that want their shores and hiking trails visited by tourists love to believe Dr Wormser and I'm sure insurance companys who now can site this report and deny coverage love to blieve Dr Wormser.
In this day and age it seems incredible that the facts can be so muddied and misinformation be so prevalent and the truth be so vehemently denied. We are being led astray at the detriment of so many. I'm no conspiracy theorist but hey, we all were led to believe there were WMDs, look what happened there!
Thankyou Susan Johnson LI NY
Posts: 58 | From NY | Registered: Dec 2005
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Up!
Posts: 4258 | From over there | Registered: Jul 2001
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posted
I made it back home too! Thanks for asking.
2,500 miles from WA state. From the car to the plane to the bus to the train to the taxi to the shuttle......Whew!!!!
Faith and reliance on people I had never met....Barbara's e-mail directions I carried everywhere with me. Thanks KAYAK for your company and encouragement.
Amazinging successful rally..... I am so glad I came.
I didn't know anyone...... but knew everyone. Von
Posts: 258 | From Washington State | Registered: Nov 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I FINALLY had the pleasure to meet Ms. Kayak! A thrill for sure!!!! I'm just so sorry I couldn't spend more time with her and everyone else.. as our schedule was tight. What a dear one she is.. but I already knew that without meeting her in person!
And von.. I'm glad you made it home! Thanks for letting us know. WHAT A TRIP for you dear girl. I posted to you over in General Section... by the way.
And yes... as Kayak said.. let's keep the ball rolling!
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hi all...i'm baaaaackkkkk!!! but mostly i'm in bed. i got up to take meds and check my mail. pigwit told me about this thread so i came to check it out.
gee...reading this it feels like the magic followed me home. thank you. i really do need it. i kinda hurt a lot of places right now. (BUT NOT MY HEART!!!!)
everything you guys said about me is true. i really don't trust what is going to come out of my mouth. once i told the kids to "get in the oven" when i meant "get in bed"
LAUUGH!!!! it's important. laughing and singing and cuddling with my schnauzer is getting me thru this. the last 200 miles i was singing protest songs and changing the words to make them lyme friendly. someone should start a protest song thread over in activism.. start it with "leaving on a lyme train"
anyway-i guess those of you who posted for me got my message right-thank you-thank you-thank you.
i am going back to bed. probably for about 12 hours until i can have more meds...but PLEASE...KEEP THIS BALL GOING.
i'm way too tired to do it-but maybe someone can summarize the ways to keep the ball rolling(those of you who are feeling ok can help..)there are suggestions all over this board-but i wonder if we could get them in ONE post---pat smith said stuff (the call to actions), mo said a lot...tincup said a lot---we really need to follow up on all the news things and bring the message in objective-concise language to our local papers and stations with pics of locals who went there. OR...even pics of locals who couldn't get there cuz of illness or cuz of spending all their money on meds/treatment etc.
oh man...i' gotta get to bed.
thank you all again. LP
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