posted
Thanks to Andie333's post about Rebecca Wells, I went to her website to read her latest message to her ya-ya fans.
It is a beautiful letter and all should really go read it.
I know some of you are lazy little Lymies and may not want to spend the energy because you may not be familiar enough with Rebecca Wells or the Ya-Ya world. That's OK, my dear ones as I will post a part of Rebecca's letter right here for your convenience:
quote: "I ask you to join me in a rallying cry for two causes which are close to my heart: Lyme Disease and Katrina relief. At first glance, they may not seem related, but they are. Each has to do with caring for people more than power. Each has to do with kindness and generosity and NOT letting suffering drop off the map just because CNN is not covering it.
Because I am not strong enough at this point in my healing to travel, lecture, testify, and perform at benefits, YOU are my compatriots, you are the ones who can help spread the word. Together, let's make Lyme and Katrina relief the Ya-Ya causes. Let's put on our hats and gloves and tiaras, let's strut or stumble or roll out into the world and make the kind of noise that Vivi, Caro, Teensy, and Necie would make in the face of so much suffering.
Every illness and disaster is filled with pain. Because I ask you to support Lyme Disease and Katrina relief does not discount other diseases or disasters. It's just that Lyme and Katrina have hit so "close to home" for me on so many levels that I must choose my battles.
In short, let's be kind. And let's be proud to be called Uppity Women."
NOW - here is an ACTUAL CELEBRITY FIGURE asking a large readership to get up & help us.
I was curious as to how the Ya-Ya's were reacting to Rebecca's letter so I went to the Ya-Ya Gumbo Message board and did a little digging around.
I think it's at the 'Front Porch Visitn' section that they have a discussion about HOW to help OUR CAUSE.
Right now they are thinking about ways to raise funds for us - and funds are always necessary.
BUT -- right now - I think more than anything we need their help in getting the attention of Congress.
There are bills in sub-committees that if enough people speak out - we might actually get them PAST the sub-committees instead of allowing them to die.
What do those two things have to do with Ya-Ya's and why am I telling this to y'all?
WELL - I know darn good & well that many of you are fans of Rebecca Wells. I know many of you are already Ya-Ya's at heart. I know I am, although I have not signed on the Ya-Ya board as yet because I'm busy writing to YOU and trying to prepare letters for Congressional folks.
BUT here's an idea....some of us (YOU) could go sign up on their message board - tell your Lyme story, & encourage them to help support the current legistion!
They seem quite eager to do SOMETHING - and I think it might be nice if we HELP THEM HELP US!!!
Let us embrace the Ya-Ya's !!!
Now one little bossy note from me....("one" - yeah, right!)
The Ya-Ya's seem like very 'nice' people. I think it would be NOT A GOOD THING for us to write with a lot of anger & 'lunacy' (which the whole lunacy part is why I'm holding off a bit before I log on...)
Also - I will most likely not log on as Dr. Wiseass as I don't know if that might be equivalent to showing up drunk & naked at a tea party...
PLEASE PLEASE PLEASE keep your letters/posts very positive and GRATEFUL for any help they can give us.
OK, that is my current bright idea...so what do you think?
Hugs & from the bossy naked "drunk" lunatic,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I will do anything I can to make noise.I am just too tired to "scream" loud enough. But ya who isn't is OPRAH WINFRY
Her show draw hudge attention.Last week because an author happened to lie!
I think we could find a way to whip her up about our lyme cause the sky would be the limit.
Ophra,God bless her, devoted a whole week to katrina.
She got the creme'd'la'creme of actors to go in to the hardest hit areas.She got Julia Roberts in there hugging everyone .It brought tears to everyone.
How much more important is our plight.We can never re-build our "houses" Or re-locate or evac to another body.Some of us are screwd for life.
Hundred of thousnads of americans who "can never go home agin" Literally.
If we scream loud enough we may get enough publicty.And publicity brings money.And money brings research.
The sqeaky wheel gets the most grease.
Count me in.
I have the energy of an 80 year old & the confusion of an alztheimers.But I am willing to do anything in my limited power's.
I hope those that got well and moved on will not forget their suffering and our current suffering .
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Sorry, Dr. WA. I did go check it out, and was very touched at how the ya-yas are trying to think up some fundraisers.
I would like to join you in starting a thread over there on our stories, so they understand that we could really use some help, particularly because it's hard to advocate for yourself when you're sick or caring for sick children.
I will be away from the board for the day (off to take son to Dr. J), so hope to hear more/talk more when I get back tomorrow night. (!)
And if you've read Rebecca Wells, you know that naked parties aren't always a bad thing!
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Dana, you must be feeling a little better today
I feel your fire!
Oprah! Of course, imagine if we had Dr. P (important researcher and brilliant llmd) talk about his ideas on how most people with MS, Lupus, ALS, fibromyalgia, Chronic Fatigue and other goddawful illness is rooted in untreated LYME! IT would be earth shattering. Everybody and their mother has one of the above ailments!
Talk about underreporting!
Okay so who knows Oprah? Anyone? IS Amy Tan here? Maybe our YaYa author...Oprah likes her.
Would be great to time it will senate bills on the table.
-------------------- We are spiritual beings on a human journey...
posted
I'm with you here. I've got to believe that we can get Oprah's ear. She's a good person. I still believe that. She's one person that has enough money and power to not give a damn about whether it is politically correct.
There's got to be a way to get her attention. I posted the suggestion to LDA about possibly getting the literati to pose the idea to Oprah about a show with them on it, plus of course, a well selected LLMD or two. Never heard anything back, but I doubt I would anyway.
Seems to me that the Lyme Literati would not be turned down if they approached Oprah. Oprah already thinks a lot of Meg Cabot and Rebecca Wells. Anyone have an idea of how we can get that done?
Anyone have a contact in the LDA or with the Literati?
quote:Originally posted by humanbeing: Dana, you must be feeling a little better today
I feel your fire!
Oprah! Of course, imagine if we had Dr. P (important researcher and brilliant llmd) talk about his ideas on how most people with MS, Lupus, ALS, fibromyalgia, Chronic Fatigue and other goddawful illness is rooted in untreated LYME! IT would be earth shattering. Everybody and their mother has one of the above ailments!
Talk about underreporting!
Okay so who knows Oprah? Anyone? IS Amy Tan here? Maybe our YaYa author...Oprah likes her.
Would be great to time it will senate bills on the table.
[ 02. February 2006, 12:20 AM: Message edited by: tequeslady ]
Posts: 856 | From Texas | Registered: Jan 2005
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posted
Oprah's not listening. I've written and emailed her through her staff for two years. But I agree she's the one. One Oprah show could change the face of Lyme in one day. But we would need her to stay away from experts, just listen to the real people--us.
How could we bombard Oprah? Might we get Rebecca Wells and Amy Tan to call Oprah?? Wouldn't she have to take their calls??
And Oh yes!! Now's the time. As the opening post said soon we will not have any doctors to treat us.
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
This is SO important--to get the word out--to Congress and the media. I'm leaving the country so can't focus on writing letters, etc., but I can send money. What's the best organization to donate to? Which one is trying to publicize how epidemic this disease is? I was just at a LD conference. The LLMDs are estimating 200,000 new cases a year (10x what the CDC estimates).
Ewok
Posts: 33 | From Florida | Registered: Nov 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Yes! I firmly believe amy Tan would have the best shot at Oprah's ear.
And rebecca wells too.
But how to contact them?
I have a week off from my meds and will try and spend the week to find a way to contact these people.
I agree we dont' need experts...That's the last thing we need is one of the good ole boys at the CDC.."hard to caught...east to cure.."disseminating harmful information.
I have noticed over the years,Oprah has had alot of real life people on telling their heart felt experience's.
There was a sick little boy, with whom she was touched by his courage.When he passed she devoted a segment on him and was crying heart felt tears,because he touched her life.Actually,so was I.
I don't think we should give up on this.No matter how many letter's we write.
If,in this year alone an est.200,000 people come down with lyme this year alone,if only 5 % of them wrote a short letter to Oprah,that would be a staggering 5000 letters.
And that is just the number's for this year alone.Not counting the hundred's of thousands american's who suffer from chronic lyme.
I think sooner or later,she or her staff would take notice.
Lets all try to contact these author's and see if any of them may be interested.
p.s. Amy Tan has a new book out and may be interested in the publicity?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
First, let's do what Dr. Wiseass suggested and place a post on Rebecca Wells' site.
Sorry doc, I didn't mean to hijack your thread.
Posts: 856 | From Texas | Registered: Jan 2005
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bettyg
Unregistered
posted
hi doc, good suggestions....
Yes, I too have written Oprah and LARRY KING LIVE, but received no replies to CHRONIC LYME shows.
Orah is the way to go, & I suggest the 2 authors you mentioned as LYME PATIENTS would be excellent.
Doc, could you edit your post where you quoted parts of what YaYa said. With my extremely CHRONIC sensitive eyes, I just can't read BOLDED things ... bold causes my eyes so much pain it's unbelievable. Thanks doc.
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Good to get the Ya-ya's on board to raise funds for research, education etc.
Oprah has done several shows that included Lyme disease over the years. I don't have a lot of hope we will convince her to do a show on Lyme now, but it is worth trying, I guess.
There is quite a lag between the agreement to do a show on a subject and the time it gets on the Oprah show.
I think a panel of the writers who suffer from Lyme would be good, of course they would all have to be allowed to promote their books as well. That is to be expected.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I do not know if anyone can really get to Oprah..One poster started a group on her site and only a couple of us contributed..I have not been able to look at it in months so unsure if it is still alive..
As far as I know, no one on her staff ever picked up on it.
I tried to write her but there was no address..Guess she got so much mail that they went to this email form..And I am sure that she is not the recipient.
I think the celebrities would be great if they would try to do something...
But do we have any posters in Chicago? Perhaps they have some ideas on what we could do..What about someone that has healthy grey matter writing a letter to the local papers in Chicago? WE have a few good writers perhaps they could try something..
And perhaps the Ya Ya's willl be able to do something to help with this..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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I assume I shall see some of you there before long??????????????
Hugs & from Duchess Potty-Mouth-Who-Rarely-Shuts-Up a/k/a DR. Wiseass
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Wisebutt, thanks for tuning me in to this ya ya group. I admit I didn't know about her or this site. I will post my story soon.
Thanks for waking me up. lol
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
loved your letter!!!!
no energy today. we'll try tomorrow
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Yep,you may have a potty mouth, but at the end about the chained dog analogy, made me cry like a baby.
I say more power to you in how ever you get the message out.
It's out their and it's strong.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I haved tryed to login now for an hour to the ya ya site so I can post a lyme story
Couldn't get it to go thru
I am exhausted & totally disgusted and pathedic Sorry
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
hey doc,
forgot earlier to say on editing, just delete [QB] at beginning of your 1st post and end of the bolded part....thanks!
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My apologies for not answering your request earlier. I'm such a lymebrain, you know -- and I've been really busy writing.
Anyway - I believe I have complied with your request and am re-submitting the excerpt from Rebecca's recent letter to her Ya-Ya fans below:
quote: "I ask you to join me in a rallying cry for two causes which are close to my heart: Lyme Disease and Katrina relief. At first glance, they may not seem related, but they are. Each has to do with caring for people more than power. Each has to do with kindness and generosity and NOT letting suffering drop off the map just because CNN is not covering it.
Because I am not strong enough at this point in my healing to travel, lecture, testify, and perform at benefits, YOU are my compatriots, you are the ones who can help spread the word. Together, let's make Lyme and Katrina relief the Ya-Ya causes. Let's put on our hats and gloves and tiaras, let's strut or stumble or roll out into the world and make the kind of noise that Vivi, Caro, Teensy, and Necie would make in the face of so much suffering.
Every illness and disaster is filled with pain. Because I ask you to support Lyme Disease and Katrina relief does not discount other diseases or disasters. It's just that Lyme and Katrina have hit so "close to home" for me on so many levels that I must choose my battles.
In short, let's be kind. And let's be proud to be called Uppity Women."
YOU can be EMPOWERED to take care of your own visual needs with regards to posts on this board!
Here's what I discovered:
All you have to do is COPY/PASTE any section of a post that doesn't meet your needs.
You can re-post it in a thread if you feel like it - OR -- you can just repost it in a Word document and then make ALL THE ADJUSTMENTS you need!
In a WORD document: -- you can take all the bolding out -- you can ENLARGE the font for greater visibility - and you can even break up the text into the shorter paragraphs which you prefer.
THIS is such a good discovery, don't you think?
Now COPY/PASTE away Ms. Betty!
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Good show, Wise!
Thanks for the tips
Posts: 2549 | From never never land | Registered: May 2005
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Introduce yourself as a fellow Lyme patient & use this as your opportunity to THANK HER for her efforts and to WISH HER IMPROVED HEALTH on this very difficult journey for which you are all too familiar!
YES, you will have to sign up to use their boards...just like you did here.
YES, you will need to come up with a User Name.
YES, you CAN do it!
They have a FUN Ya-Ya Name Generator. I will go find that link and be back.
Meanwhile, go find some virtual birthday presents that you can take to the party. Don't show up to the party empty-handed -- especially when we're crashing it!
Hugs & from the bossy maniac,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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I'll give you hugs & WHEN YOU GET THERE and not a moment before !!!!!
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi ALL
I finally shook of my lyme fog & posted on the ya ya site.
You can acccess in by following the posts above by dr.wiseass. This is how I did it.It was really easy:
You click on the generator and they a sign you a login name.
Then you sign in.(it didn't take more than 5 minuets.
Then go to the Welcome wagon & leave a breif hello & bio.( This is where i went wrong first in that my first one wasn't breif and tended to ramble my life's story)
Then go to Front porch visiting and either leave a repley under the lyme thread started by Dr.wiseass or start a new one.
The board there is very similar because it is set up much like here.
I started a new topic under the heading" It came like a theif in the night.." 5donna8
The ya ya's really want to help and there beloved Rebecca wells tells her lyme battle in the fisrt few threads at the top on the home page.
I believe that if, in my heavy lyme fog and low energy level. I could manage it so can you.So go ahead and make a difference out there.
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