update us on your starting petitions for your area and mailing the lists to:
PALLONE .... us mail....
KENNEDY .... by email; a group list of complete names and full mailing addresses!!!!
i'll send this info also to LDA PRES. PAT SMITH!! Posted by bettyg (Member # 6147) on :
..
are there any of you who can NOT afford to call them?
if YES, please send me by PRIVATE MESSAGE, 2 PEOPLE STANDING TOGETHER,
your true full name
and complete mailing address.
i'll compile a list and then send to KENNEDY'S OFFICE BY REGULAR "PRIVATE" EMAIL to email shown above.
NO ONE will see your private info except me and where it's sent to in WASH. DC!!!
would love to hear from you!!! betty
Posted by bettyg (Member # 6147) on :
is there anyone on here who would like to represented as a PUT OUR LYME BILLS ON THEIR AGENDAS? *********************************
i'd be happy to do it! We have some good talks daily!! ************************
Posted by klcst (Member # 3427) on :
Who is leading this legislative stuff?
I called and the Lyme bill was considered dead in the fall of 2007. There was no single hold out in the Senate or Rep side so why are they harrassing Pallone's office? The Senate had only 12 cosignors out of 100, and the Reps had 110 out of 435. That is not even close to being a single hold out situation. Now we have another legislator who will probably never work on anything related to Lyme due to the poor leadership in the Lyme community. How many bridges are they going to burn while people continue to suffer?
We need leadership that actually knows how bills become law and the politics that are involved with it. Those poor sick people that went to protest a bill that does not have a chance of passing because it was dead. I am fed up!
Posted by bettyg (Member # 6147) on :
quote:Originally posted by klcst:
Who is leading this legislative stuff?
I called and the Lyme bill was considered dead in the fall of 2007.
There was no single hold out in the Senate or Rep side so why are they harrassing Pallone's office?
The Senate had only 12 cosignors out of 100, and the Reps had 110 out of 435.
That is not even close to being a single hold out situation.
Now we have another legislator who will probably never work on anything related to Lyme due to the poor leadership in the Lyme community.
How many bridges are they going to burn while people continue to suffer?
We need leadership that actually knows how bills become law and the politics that are involved with it.
Those poor sick people that went to protest a bill that does not have a chance of passing because it was dead. I am fed up!
lisa,
did i just hear YOU volunteer to be the LEADER of this?
LDA PRES. PAT SMITH is leading the way on this!
also, we have 14 SENATORS now as co-sponsors; house reps no. is correct.
did you read pat's letter informing us the IDSA met with PALLONE'S FULL SUB-COMMITTEE on the lyme bill the day after blumenthal's announcements of all the WRONG DOINGS OF IDSA?
pallone's office will NOT take it up until the new lyme committee meets and their RESULTS after talking to ombudsman.
lisa, then why has KENNEDY'S office also told me they have a staff person WORKING ON THE LYME DISEASE BILL FULL-TIME on our issues! yes, i know he is a senator
vs. pallone being a house rep....
also, pallone was given almost $500,000 from the MEDICAL COMMUNITY! you bet he goes with what THEY WANT not us!!
our lyme bills are NOT dead! that's why we are taking action, and daily phone calls to the 4 dc offices where our calls are COUNTED DAILY and 2 of 4 take our full names/full addresses.
i'm also put on the opinion line daily for my 2 minutes. DO YOU CALL THAT DAILY? YOU COULD REALLY VOICE YOUR OPINION THEN TO THOSE WITH "POWERS TO BE" !! Posted by klcst (Member # 3427) on :
I did not realize that those that represent a large group are never to be questioned or critcized. Forgive me.
Having 14 Senators out of 100 co-sign a bill is less than 25%. Having 110 out 435 Representatives is 25%. These numbers reflect very low support and no bill will get to the floor without a certain number supporting it.I called several legislators offices, including Kennedy's and they confirmed Pallone is not the single hold out on the Rep side. I asked Kennedy's office why the bill was not on the floor and it is because the numbers supporting it are very low. Yes, Kennedy supports Lyme patients efforts, but you can't go to the floor without support. If you can't get to the floor you have no chance of a bill passing. By the way, all legislators in committees get money from special interest groups. It is the American way. You have singled Pallone out for getting this money and it paints Lyme patients as ignorant. He is not the only one in this subcommittee to recieve money from the medical groups, and you can bet there was plenty of money to go around on the Senate side.
You do not move forward with legislation by alienating legislators and calling to action sick people with limited funds to protest a Rep who is not the single hold out.
Poor choices are being made for Lyme patients, and as long as the LDA keeps requesting Lyme patient's hard earned money for donations then they get the crtisizm, too, when it is warranted.
I call anyone who is disturbed with what was discussed here to call the legislators offices themselves to confirm rather than take our word for it. It is the American way to not follow blindly.
Posted by bettyg (Member # 6147) on :
i hear you complaining; i don't see you taking any type of action. why?
you say YOU represent a large group of people; who?
Posted by klcst (Member # 3427) on :
I did take action...I complained on this site about the LDA's choices regarding this bill. I also called the legislators and voiced my concerns.
Please go back and read my post. I never wrote that I represent a large group. I wrote, " I did not realize that those that represent a large group are never to be questioned or critcized. Forgive me.
Having 14 Senators out of 100 co-sign a bill is less than 25%. Having 110 out 435 Representatives is 25%. These numbers reflect very low support and no bill will get to the floor without a certain number supporting it.I called several legislators offices, including Kennedy's and they confirmed Pallone is not the single hold out on the Rep side. I asked Kennedy's office why the bill was not on the floor and it is because the numbers supporting it are very low. Yes, Kennedy supports Lyme patients efforts, but you can't go to the floor without support. If you can't get to the floor you have no chance of a bill passing. By the way, all legislators in committees get money from special interest groups. It is the American way. You have singled Pallone out for getting this money and it paints Lyme patients as ignorant. He is not the only one in this subcommittee to recieve money from the medical groups, and you can bet there was plenty of money to go around on the Senate side.
You do not move forward with legislation by alienating legislators and calling to action sick people with limited funds to protest a Rep who is not the single hold out.
Poor choices are being made for Lyme patients, and as long as the LDA keeps requesting Lyme patient's hard earned money for donations then they get the crtisizm, too, when it is warranted.
I call anyone who is disturbed with what was discussed here to call the legislators offices themselves to confirm rather than take our word for it. It is the American way to not follow blindly. "
Posted by daise (Member # 13622) on :
klcst,
Just exactly what is your beef?
It is evident that you have not bothered to read the developing background on this effort, here at this site.
You've got some facts dead wrong. Pallone is the chairman of the committee holding our Lyme bill hostage in the House.
Kennedy is dragging his feet big time.
We're doing the best we can, and most of us are quite ill, very busy inbetween napping and taking care of the many things we have to with our illness.
And many of us are poor--and having to deal with that daily, too.
If you want to complain, complain, complain, then why don't you offer solutions? Or shut-up.
And why the H--- beat up very ill Lyme patients on this site? We've had enough of that from many sources.
Give it up.
daise
Posted by klcst (Member # 3427) on :
I did offer solutions, and I have the facts straight because I researched it, but perhaps that was what you did not like. I also took some action by calling and making my concerns heard.
I am sorry for your pain, I truly am... I am very fortunate that I am able to walk again and I am doing well, but it came at a price; we lost our home, business, savings, and retirement. We try to make ends meet the best we can each month. I have two children that I have passed this horrible disease to and they have relapsed. It is all very devastating for all who suffer from Lyme.
It is because of all this suffering in my own home that I keep up with legislation. I have always been one to do my own homework and what is being confirmed at several legislative offices, not just Pallone's office, was not equaling up to what was being discussed in the Lyme chat groups, or the call to action requests. That concerns me because suffering people with Lyme, such as my family, need help.
Yesterday, I researched how a bill is passed to make sure my memory was correct, and I made some phone calls to Washington, DC. No bill gets to the floor through a Chairman, whether it is in a subcommitte or committee unless the bill has support within that committee. In Pallone's case there are only 3 out of 12 in this subcommittee that support the bill. And even if he ignored the legislative process, which he can't, and it went to the floor to vote, there are 110 out of 435 Representatives that support it. It would never pass...this means a bill is dead.
I still do not know why there is a call to harass Pallone, and that was one of my original questions on this post. It is not sound judgement to call to action a group and ignore how bills become law and the politics that goes along with it. Alienating a legislator, no matter how right a groups cause is, is bad business.
I am sure LDA's intentions were the best, but the pathway to hell is paved with good intentions. My family needs someone or some group to work on legislation who is savvy about this process.
I am sorry you do not like the questions and criticism. As I said, as long as the LDA, or any other group, keeps requesting Lyme patient's hard earned money for donations then they get the criticizm too, when it is warranted.
If you do not like my questions or posts, and you like to follow blindly, then ignore what I have posted. I don't apologize for thinking, questioning, and speaking out for my family who has suffered great financial loss, and continues to suffer from this horrible disease.
Posted by daise (Member # 13622) on :
klcst,
I do not follow blindly. How the H--- can you support a statement like that? You can't.
Pallone is owned: Period.
When the bill is brought up for a hearing in the House and Senate, it is then that we have the opportunity to educate members of Congress, in person, with knowledgeable people.
You're all hot air and not willing to admit it.
Once again, stop beating up ill people.
This is the last time I will respond to you.
daise
Posted by bettyg (Member # 6147) on :
kl,
please email your comments to where they MIGHT do some good!!!
to the LDA PRES PAT SMITH! ************************
to go to THEIR LDA SITE; go to left side and click on the icon for them! then your comments may be heard by the person WHO DECIDES THINGS! WE DO NOT HERE!!! **************************** ****************************
this is my last reply to you also.
i'm sorry you have lost everything; OFFER YOUR ASSISTANCE TO PAT SMITH TO HELPING TO CHANGE THINGS.
THEY NEED VOLUNTEERS; ask to be involved in the lyme bills in congress activism. good luck! *********************************************
Posted by Cobweb (Member # 10053) on :
Dear klcst -thanks for clarifying how the political machine works and why the lyme bill is stuck.
I am not a politically savy person-so I need someone with your understanding and patience to explain it to me.
Seems like a great deal of effort goes into these calls for action with very little results-now I understand why.
I guess people just don't like feeling helpless-but it is better to use time , energy , and money wisely rather than running down a path of futility.
Perhaps that's why people get exhausted-because there is no return for their effort.
Posted by ellenluba (Member # 1707) on :
Whether or not to put a bill up for a hearing and/or a vote is solely in the hands of the chairman of the committee or sub-committee in which the bill resides. Pallone is chairman of the Health sub-committee of the Energy and Commerce committee. Ellen
Posted by Tincup (Member # 5829) on :
You are being slammed and mocked again... just so you know.
May I suggest?
Everyone is allowed to speak their opinion here... unless they've been tossed out on their ear for breaking rules already... and they can post as long as it is done respectfully and if following LymeNet's rules.
That said... MY opinion is that some posters are only here to stir up trouble. It seems they don't have any good ideas on what should be done..... and if they do.... they don't follow through with them.
But they come here to post now and then because they just simply want to whine and complain about what others are trying to do. They often complain about Pat, the LDA, ILADS and their doctors, alternative therapies, lab tests from IGenex... etc.
These people usually post negatively toward what we are trying to achieve ... often about political actions led by the LDA... and often without having a clue what they are talking about. (A couple of calls and a beginners website does not an expert make.)
If the LDA says the sky is red... these posters say... oh no, it isn't... it is blue. If the LDA says the sky is blue.... they say... oh no, it isn't... it is orange. Just for the sake of kicking and arguing.
Example- as I know they like documentation and substance... and transparency...
Case in point-
klcst said... "There is nothing more irritating to a govt agency than having their phone lines tied up with Lyme complaints. Congress doesn't like when it happens and the CDC doesn't either. I suggest we hit both and then lets contact certain newspapers with the same phone calls asking for help in getting this to the public. Anyone game? I know my family and friends are."
And kl said... "That is why I suggested we tie up the phones at the CDC, Congress, and then contacting key newspapers of what's going on."
But here, klcst is now saying on this post...
"Alienating a legislator, no matter how right a groups cause is, is bad business."
And..
kl said.. "You do not move forward with legislation by alienating legislators and calling to action sick people with limited funds to protest a Rep who is not the single hold out."
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kl also disagrees with Pat on most topics and it doesn't matter what topic... example ...
"I beleive Pat Smith is misinformed. If you don't want to post your docs name for privacy issues then that's prudent, but to say we are being watched is simply not true."
And ILADS...
"I am told that ILADS is not being run as it was set up to be. I have spoken to a few doctors who are members and they confirm this. I sure wish those guys would get their act together."
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You can often tell the posts designed to argue for the sake of arguing... as they say things such as this...
"A friend asked me to post this for her"
This often means the poster who would like to bash people, places and things here has already been banned from LymeNet and can't.
Another way to tell you are being kicked for your independent thinking and motivation to help all of us move forward... realizing the Lyme war is MUCH bigger than one person can take on by themselves and we need to work together.... is.... their friends join in and agree with them, if they are still allowed to post here (many aren't).
If they can't post here.. they take the post to another site where it can be bashed uncensored and without regard to people's feelings or efforts... without the facts... and without others opinions welcomed.
Yes, they say they want opinions.. but don't be fooled. They want fresh meat to bite into... in my opinion.
If you have time on your hands... take a look at some of the examples below. If not... eat some potato salad, enjoy the holiday and be thankful that we are making progress and we are trying.
kl... it would be nice if you want to come here and share your thoughts... however... showing up every few months or so and only to kick people and doing it when you don't even know the facts......
Well, maybe you'd be better off finding more constructive things to do with your time? I really don't think your delivery is going too well.
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kl said..
"Who is leading this legislative stuff?"
You have such strong opinions against what is going on... and you don't know that answer? ???
For others who may not know... the bill was prepared by Congress.
It was given the fine tooth comb many times over by a number of Congressional leaders, bill writers, lawyers, LLMD's, activists, etc.
It is supported by XX number (over 100 or more) organizations and groups nationwide and thousands and thousands of patients and their families.
It has the support of the majority of Congress.. both House and Senate.
The big stick-in-the-mud is Pallone. The IDSA went to him personally and convinced him to not let it go further.
That means we've been shafted. If he doesn't want it to go forward because of the IDSA spewing their garbage... he should at least allow it to go to a vote to see what the rest of the country wants.
This IS America... isn't it?
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kl said... "Having 14 Senators out of 100 co-sign a bill is less than 25%. Having 110 out 435 Representatives is 25%. These numbers reflect very low support and no bill will get to the floor without a certain number supporting it."
Actually, that is incorrect about who does and does not support the bill. These numbers indicate only those who have signed on as co-sponsors.
I have a list here of those who support the bill and it is overwhelming in our favor. And I've spoken to these offices myself over the past year- this isn't just opinion or hear-say.
Just because someone isn't signed on as a co-sponsor to a certain bill does not mean they aren't supporting the bill and won't vote for it.
Feel free to contact any Congressional office and ask them if the only reason they don't co-sponsor a specific bill is because they don't support it or won't vote for it. The answer will be no.
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kl said...
"We need leadership that actually knows how bills become law and the politics that are involved with it."
Well, Congress led the way here. I am sure they would appreciate your comments and would be pleased with your words of wisdom regarding their efforts.
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kl said... "Those poor sick people that went to protest a bill that does not have a chance of passing because it was dead."
Sorry... it wasn't dead. It still isn't dead. No one will know until December if it is dead. If it dies, Pallone is the reason... and those who have done nothing to help are the other reason.
BTW- people are working hard still to try to make it happen and make other things happen. Rather than sitting around waiting and complaining... as it may not make it... there are other avenues to take.
I'm sure you have ideas that will move us all forward? Be my guest.
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kl said.. "Poor choices are being made for Lyme patients, and as long as the LDA keeps requesting Lyme patient's hard earned money for donations then they get the crtisizm, too, when it is warranted."
1. I don't recall anyone from the LDA asking for my money or yours. They do accept donations though.
2. With all your complaining.. my guess is you've donated about 2 1/2 million dollars to the LDA already?
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kl said.. "I call anyone who is disturbed with what was discussed here to call the legislators offices themselves to confirm rather than take our word for it. It is the American way to not follow blindly."
How patriotic of you all (I see you said "our word" so I would imagine your friends are loving this bash fest), however, again you assume folks here are too stupid to be able to read and think for themselves.
Perhaps your insults are why folks are having trouble swallowing what you are saying. And the games too, let's not forget the games!
``````````````````````````````````````````` kl said... "I did offer solutions, and I have the facts straight because I researched it, but perhaps that was what you did not like."
Actually.. I haven't seen one correct fact in your posts. A couple of calls after the fact... and a beginners website does not an expert make. Even with doing this for years on end, does not an expert make.
I was told that some bills take 20 years to pass. It is not that they are bad... not at all. It is not that they only have a handful (5) co-sponsors that makes or breaks it... there are many reasons a bill won't be passed. Pallone is our reason right now.
It certainly isn't for lack of education or trying on any of our parts.
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kl said.. "In Pallone's case there are only 3 out of 12 in this subcommittee that support the bill. And even if he ignored the legislative process, which he can't, and it went to the floor to vote, there are 110 out of 435 Representatives that support it. It would never pass...this means a bill is dead."
Absolutely not true. Co-sponsors and "support" are not the same. Sorry.
But you can put in another quarter and try your luck again.
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Cobweb said.. "Seems like a great deal of effort goes into these calls for action with very little results-now I understand why."
If you need any further explanations, please feel free to ask those who know the facts. Mikulski and other Congressional members... as well as the LDA website is a good starting place.
BTW- hundreds of articles, many tv shows and radio's have been broadcasting our situation because of the bill and the LDA efforts. In addition, Congress is up to speed (as much as possible)... and has been educated.... one politician at a time.
People are paying attention now where for years they weren't.
I still make contacts with state legislators in states where they ask... "Isn't Lyme a fruit disease?" And I still hear state politicians say things like... "We don't have Lyme in Arizona."
We as a community, all volunteers, all patients and family based, have made HUGE strides and have accomplished sooooooo much.
Have we managed with this bill effort to get everyone a good doctor locally who takes our insurance or let's us be seen for free..
And do we all have access to all the meds, physical therapy, etc we need...
And do we all get treated immediately upon suspicion of a tick bite..
And is there a good test yet or a cure?
No.
But how much can a handful of chronically ill activists and sick patients do at one time? Even with the assistance of a small group of over worked ILADS doctors?
Help is always needed and appreciated.
Posted by bettyg (Member # 6147) on :
tincup,
thanks for the links of this person's continued NEGATIVITY complaining about everything and NOT DOING ANYTHING!
Posted by Tincup (Member # 5829) on :
I went to shut down the computer and realized I forgot to add this link.
Saying that we didn't have enough co-sponsors to get the bill passed...(when about 3/4 were passed with under 20 cosponsors)....
Or that we didn't have enough support for the bill... is just plain old wrong.
Before you decide to bash peoples hard work and efforts... and present yourself as the great RIGHT way... at least have the decency to get your facts straight and not mislead people.
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Also-
From the full House Committee members...
1. Approximately 1/3 of them were already cosponsors signed onto the bill, so obviously we had their support.
2. I spoke to at least 2/3 of the committee myself. The others weren't on my list so I can't comment. I did not, however, hear from others they had any big time hold outs on the committee.
3. Of the 2/3 I spoke with, ALL of them were supporting the bill. Some of them even wrote to Pallone to kick him into action. Many called him directly... and others met with his office people to push the bill.
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Sooooooooooo...
Saying things like...
" In Pallone's case there are only 3 out of 12 in this subcommittee that support the bill."
HUH? Hello?
Well, where did the number 12 come from first of all? There are more than that.
Sooooooooooo... for someone who claims they researched the Lyme bill and the process of how to get a bill passed on a web site.... and those who support this nonsense, best think again.
I'm afraid the ones you count on to set the facts out there really missed the boat. BIG time!
Luckily we have people in place who DO know what they are doing and who are working to help everyone. And they work TOGETHER to help patients and our doctors.
That is why I listen to them... because they KNOW the real deal.
I also check their information, feel it out.. and then support the efforts I want to, as I can.
And for those who brag that their way is right and everyone else is wrong... and those who mock the efforts chronically ill patients are making here at LymeNet to help themselves, their families and future generations.... and those who try to put them down by beating them with sticks when they have no clue what they are talking about...
Well, let's just say, your slip is showing. And I don't know why you do this stuff? What motivates you to blindly fight the system that is trying to help you?
Your actions are so very harmful. Why can't you just leave it alone?
How many MORE children and families will have to suffer because you are steadily working against (with no clue about anything) this decent grass roots effort to make changes for the better?
Posted by Cobweb (Member # 10053) on :
I've seen this happen before-when people are spinning their wheels-the mud starts flying.
Posted by northstar (Member # 7911) on :
CW said:
quote: - posted 06 July, 2008 09:27 AM I've seen this happen before-when people are spinning their wheels-the mud starts flying.
That is so true! But the more people you have pushing the car out of the mud, the greater the chance the car will gain momentum and get out of the rut.
If one feels that calling Pallone and Kennedy's office is inadequate, then they also also could continue to call their own state rep's and senators to be sure they have signed on.
Northstar
Posted by daise (Member # 13622) on :
Thank you Tincup.
I'd say he or she has been exposed: they had nothing to contribute--at all.
daise Posted by sometimesdilly (Member # 9982) on :
lordy.
i can't even begin to make sense of all this and why that all too familiar pile of fur is on the floor again.
how simple can this be? if you don't like what is being done by others, then do whatever you believe needs to be done. if you beleive that what you are doing is the right path to follow, then feel good about what you are doing.
what legislative strategies succeed and which fail and the why of it all is not a science, but a highly subjective, very complex question with no single right answer.
l;ooking at onesliver of this, though, it doesn't take a lot of basic research or experiemce om how federal congressional legislation is made to understand that of course individuals matter, ecpscily when they chair committeees.
dill
Posted by Robin123 (Member # 9197) on :
Thx, TC, for setting the record straight. I found particularly interesting your report on the small numbers of co-sponsors on other bills that passed, and then comparing that to the high number for the Lyme bill. Yay.
Posted by bettyg (Member # 6147) on :
robin,
yes, i found tc's comments on statistics interesting on those bills on the agenda as well.
yep, kc was exposed for what they are! troublemaker! Posted by ellenluba (Member # 1707) on :
Tincup, You're the greatest!
I take back everything I ever said about you (yuch yuch).
I started to tackle this last night, but got too tired. You, I see , must have a little group of elves that are working for you in order to get done as much as you do.
Thanks for writing that we actually have a good number of co-sponsors.
Also, one person, the chairperson of whatever committee has the bill (Pallone or Kennedy) can always kill a bill. And , for sure he is doing that. Ellen
Posted by bettyg (Member # 6147) on :
ellen,
thanks for stopping by...
had plumbers back today; sump pump wouldn't stop; so had to get new one BEFORE replacing our sewer system this week. so our phone was busy.
back to calling DC tomorrow; i do hope i will hear from many of you who are NOT able to call DC like me, and i'll keep your private info ... just that...private except to send to KENNEDY'S STAFF PERSON ASSIGNED TO OUR LYME BILL, and then every time I CALL; THEY CAN COUNT SO MANY MORE TOO BASED ON WHAT I HAVE EMAILED THEM EARLIER! Posted by ellenluba (Member # 1707) on :
Betty, Thanks so much for being such a trouper, and the same to all of you who have been calling to get our bill through the legislature. You folks are also amazingly astute in just know when people are just trying to stir up trouble.
Tincup's post was so helpful. And please don't forget that committee chairmanships are extremely powerful positions, since they decide what gets put on the calendar for a vote or hearing and what bills will be left to die. Please don't forget that anyone who claims to be educated in political action and doesn't know that simple fact, is just blowing smoke.
I'm sure attacks will start again, but you guys are right to just keep focussed on what we need to do.
You're all just wonderful. I would say it makes me proud to be a Lymie, but, to tell you the truth, if it weren't for getting to know you all, I'd just as soon rather not be a Lymie Ellen
Posted by bettyg (Member # 6147) on :
...
quoting Ellen,
You're all just wonderful. I would say it makes me proud to be a Lymie, but, to tell you the truth, if it weren't for getting to know you all, I'd just as soon rather not be a Lymie Ellen *************************************
yes, we all agree 100%; NONE OF US WOULD LIKE TO BE A LYMIE "IF" WE HAD A CHOICE ... a win-win call!!
couldn't agree more with you on your post above!
ellen, thank you and all others BEHIND THE SCENES for your intensive work, labor of VOLUNTEER HOURS away from family events, etc. in order to stand up and attend the lyme actions CLOSE to you folks!!! Posted by Tincup (Member # 5829) on :
You all must be doing something right.
I hear you are making news on several boards.
I'm just sorry you have to put up with difficulties of having Lyme disease and the struggles it brings to you and your family ...
AND have to put up with the IDiots at the IDSA...
AND have to put up with the people with Lyme who can't be bothered to help others in need.
As the saying goes..
United We Stand... Divided We Fall.
And personally, I think we make a good team.
Thank you for your positive efforts and for helping folks you've never even met, who will be sick at some point in the future. You are making history by leading the way and your kindness won't be forgotten.
We may not win all the battles with Lyme, but we will win the war if we keep pushing forward.
Rock on!
Posted by bettyg (Member # 6147) on :
well, i just made my 4 calls today to dc.
i keep forgetting this: when you call in, give your spouse/significant other, children's names, or other family members to be COUNTED TOO!
here, i've been calling 2 months and just thought of this!!! no excuse for forgetting this earlier, and yes, they will count them! ***********************************************
PALLONE'S FEMALE AID TOLD ME, "WE ARE WORKING ON THE LYME BILL RIGHT NOW!" i guess i should have asked more since i had a new gal today! i was surprised by her comment!
2nd no. asked me for my home phone no...a FIRST! then my complete mailing address.
3rd no. i asked for OPINION LINE and left my 2 minute speel....
this time i devoted it to female VETS/CURRENT MILITARY with lyme disease that that are NOT receiving treatment for their chronic lyme.
daise, i used you as an example, saying i hope you have called this opinion line, and left yoru own comments.
that you are a homeless vet; receiving NO VA TREATMENT, etc. current soldiers w/lyme need to be SEEN AND TREATED BY CHRONIC LYME LITERATE MDS not infectious drs. who do not believe in chronic lyme and who UNDERTREAT UNDER 3 WEEKS causing them to become chronic like me.
kennedy's last no....she stated they still receive calls but NOT MANY compared to early on! this one wasn't as happy as normal...
we want to be treated EQUALLY, NO ABOVE; NOT BELOW ... BUT JUST AS CANCER, HIV, AIDS, AND THAT OUR BILLS WILL BE PAID JUST LIKE THEIRS ARE.
our bills we pay out of pocket and that just isn't right. our bill has been in congress 10.5 years and it's time to ADD TO AGENDA so both sides can be heard!
Posted by bettyg (Member # 6147) on :
just made my 4 calls today.
i asked pallone's office gal if i talked to her yesterday or not; NOT her. i asked what was going on with lyme bill. she did NOT know anything but stated, "if you were told they are working on it, YES, they are working on it"!!
got opinion line, so today, i chose to speak about dr. charles jones situation of beginning his 3rd year of BOGUS charges.
he's 76, treated over 10,000 kids; came out of retirement to continue to treat since we only have 12 kids llmds nationwide.
said he's lost everything and we've been paying also for his defense fund.
idsa guideliens need to be changed, and our lyme bills in congress for 10.5 years sitting there ... need to be PUT ON AGENDA NOW!
i kept going until they said i had 15 seconds left! today's progress report. Posted by proudmom (Member # 15532) on :
Hi all, Wow!!! This is probably the most stirring thread I've read yet. TinCup, I really am impressed with all your research.
I too have been doing some of my own. The reasons for my research is trying to find another angle of attack, so to speak.
My view is that if something isn't working or just not progressing fast enough, start something new. Don't give up on whats already being done, just look for other avenues of communitating what we want and need.
To klcst; how did you get from signing petitions to this?? You effectivly distracted from the original post here. bettyg did not diserve such disrespect. You could have posted your opinion as a new thread somewhere.
The great thing about politics is that it CAN be used to your advantage. Spouting numbers and negative reports, or at least dwelling on them is counter productive.
I have found many disease groups that have similar legisations as we are trying to get passed. How long did it take to get Lupus, AIDS, and even IBS bills passed?
They are there and ours WILL be there also.
I grew up in a very politically active family and the one thing I learned is that what you have to stay focused on is your issue and educate yourself on how other camps got their stuff done.
Politics is not a very fun topic, but a very necessary evil. A challenging game of chess would be more enjoyable.
Thanks again to everyone here for all their hard work and dilligence.
Posted by ellenluba (Member # 1707) on :
Betty, I can't tell you how happy your regular calls to DC make me.
My mother, I guess like Proudmom's family, was very politically active. When she was in her mid 80's I asked how she started her day and she said, "Well , I get up and shower and dress, make my breakfast and then call the White House to let them know what I want them to do." I love it.
Right now we are in a wait and see period. Continuing calling now is really good, but we know that the number of calls will be in a lull until other action alerts are sent out. Those action alerts will depend on assessment of where we need to put most of our energy- although I would bet that Pallone will remain a major target.
Betty, I'll bet you are developing relationships with staff as you call. This can be valuable. One way the Lyme movement got to talk directly with Bill Clinton to enlist his help with getting Hillary to push on the bill is that one Lyme advocate who lived in Chappaqua spent a lot of time chatting up secret service over the years. I love it. Ellen
Posted by bettyg (Member # 6147) on :
...
"Betty, I'll bet you are developing relationships with staff as you call. This can be valuable.
One way the Lyme movement got to talk directly with Bill Clinton to enlist his help with getting Hillary to push on the bill is that one Lyme advocate who lived in Chappaqua spent a lot of time chatting up secret service over the years. I love it. Ellen"
thanks ellen; glad i'm making your day!! *****************************************
i too talked to BILL CLINTON DIRECTLY IN FRONT OF AN AUDIENCE 5-6,000 IN IOWA when he came her campaigning for her. he delivered his talk and turned around shaking hands with all those in FRONT rows on the stage with him.
our hands got tired clapping, so i was prepared and yelled out to him when everyone was SILENT,
bill, please tell hillary thank you for co-sponsoring our lyme disease bill in congress. bill has hearing aids now, and didn't get the first part of the converstaion.
then he responded to me, "you have a problem in iowa with lyme disease" and i shouted YES back! saying iowa is no. 15 out of 50 states w/lyme! others answered yes too.
then he started talking about stem cell research.. he took NO QUESTIONS from audience since his jet was 1 hr. late due to heavy ice on planes in NYC.
so i was tickled pink that he acknowledged it in the brief 2 minutes he gave me as secret service scurried him out the door!
yes, all the various people know me by know!! *********************************************
when i called today, i asked pallone's office more about the statement i got last friday ... "they are working on the lyme bill". this woman knew nothing about that, and i filled her in.
i asked her to find out more because TOMORROW WHEN I CALL, I'LL ASK FOR AN UPDATE, and she laughed!
but i truly feel the most important of all the calls i make is to KENNEDY'S OPINION LINE, and i got 2 women today working there who did NOT know there was one, and was transferred around.
this is the BEST 2 MINUTES you can spend telling them your struggles; what is wrong with the system, use examples like i did daise being a homeless vet and NOT RECEIVING VA BENEFITS that she fought in the war for!!
today, towards the end of my speech, i mentioned getting BOTH sides: ILADS VS. IDSA drs. present to open up the discussion opening up this can of worms so that WE PATIENTS CAN RECEIVE HEALTH CARE, AND REIMBURSEMENT FROM THE INSURANCE COMPANIES WHO ARE FOLLOWING CDC AND IDSA lyme guidelines.
so whatever you want to sound off about; be pleasant and tell it from your heart!
i've told my closest classmate girlfriends about my daily calls to the white house, and they can't believe it either.
i've been making them now since may 31 when my FREE LONG DISTANCE service was installed for buying a package deal thru our cable service that we've had for 30 years. earlier in year i signed up for their hi-speed internet but not the BIGGEST one they have.
it cost me same amount $10/mo. i was paying for ONLY ONE LINE and tying up our phone lines for hours!! my family/friends were furious to get the busy signal all the time! NO MORE!
i don't come from a politically active family! but i got involved in 1990 when my late sis-in-law was taken to mayo clinic, 1 wk., with her alzheimer's symptoms.
after mom's death within the month, i then got involved in brother's family since they had 2 kids and youngest was 11 at that time.
i began writing congress about early alzheimer's disease and how it effects teens and young children of these victims, etc. sis-in-law lived last 16 months in nursing home; died at age 40 !! 8-14 yr. having it.
they had her brain biopsied ... plaques and tangles present. BUT i wander now if lyme and/or co-infections were present as well since my bro. farmed w/dad!
then came mom's colon/liver cancer; and 5 months after mom died, sister, 32, diagnosed with breast cancer, and again 6.5 yrs. later cancer free ... came back. she died 41 !!
sorry; got to reminiscing on my family's early age deaths... Betty Posted by ellenluba (Member # 1707) on :
Betty, This is a heartbreaking amount of loss you've gone through, to have your closest people die so young. i' m just sorry to hear what you've been through. But I admire you for your fighting. Please keep it up. Ellen
Posted by bettyg (Member # 6147) on :
ellen,
thank you for your compassionate note to me; it is very much appreciated. that's another major reason i'm a bulldog fighter ... we had no choices in any of these events.
good news; i recruited 1 more of our lymenetters to call dc, and especially to call KENNEDY'S OPINION LINE.
i asked her to speak from a RN perspective. she will do so!!
every day when i leave my opinions, i try to address a different aspect of lyme disease without repeating same thing day after day.
so i'll type the 4 nos. i call and who they are so she can start on monday!!
i've got to remember to give them hubby's name too....always forget too!! Posted by bettyg (Member # 6147) on :
up for any newbies to help by calling dc or to get info to me so when i call in, i can email your:
full name and complete mailing address directly to their respective federal house rep/senator offices i call daily.
right now, i have DISABLED PRIVATE MESSAGES, PM, until i finish the end of a huge project i've worked on since i started here ... my newbie package.
when i get it done in next 2 days, i'll enable it again so you can PM me your info.
IF YOU ARE INTERESTED IN SENDING ME YOUR INFO, please state so in this post...then i'll pm you when my project is done and i can ACCEPT PMS again.
this will be CONFIDENTIAL; just me and emailed directly to congress office i call...KENNEDY'S!!! ************************************************
pallone's office wants a petition...with actual signatures on ....not user-friendly to do unless you are working in a small confined area to do so. Posted by MaryL (Member # 11997) on :
I really think that even if we rub people the wrong way, we are making progress. Ever hear the phrase "the squeaky wheel gets the grease"?
There are too many people out there that would like nothing better than for us to just "go away" and do so silently.
The more publicity we seek, the more people will hear about our cause. Nothing is better than "air time".
I understand the paranoia that exists - I have seen it first hand among fine people. We are afraid that we will alienate someone who could assist us.
The sad fact exists, however, that we have been overlooked & in the shadows for how many decades now?
The time for avoiding stepping on toes is over. The time for activism is now. My love & compassion goes out to all my comrades in Lyme, whether they agree with me or not.
Posted by bettyg (Member # 6147) on :
mary,
i hope you and others from both lda groups in iowa HAVE been sounding off as i have!
i've been known to GET ALOT OF GREASE when i squeak to the right folks!!
interesting, i finally finished off a roll of film i started when pres. bill clinton was here lcally campaigning for hillary. got 3 of him during his speech, but too far back to get closeups of him.
but they reminded me that I DID TALK TO HIM THAT DAY ABOUT LYME DISEASE, and he did NOT open floor to Q/A after his short speech!
i can't read any other posts from replying here...so this might be repeated....
when our hands got tired from clapping and he was STILL on stage, i hollered to him when it was SILENT,
bill, please thank hillary for me for co-sponsoring the lyme disease bill!
he couldn't hear me at first; hard of hearing; and then asked, DO YOU HAVE A LYME PROBLEM IN IOWA?
YES, we're no. 15 out of 50 states reported. so he talked about it and then followed up by talking briefly about STEM CELL RESEARCH!
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bettyg did not diserve such disrespect. You could have posted your opinion as a new thread somewhere. ![[woohoo]](graemlins/woohoo.gif)
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