In another lifetime, on Tuesday, May 18, we would all be getting up like anyone else to go to work. We would be practicing our professions, or doing our usual routines for our home and family. Some of us still are, often with great difficulty; many of us are not.

That's what I'd like to be doing that day. If that's too much to ask for, then my next choice would be that we'd be going to witness history; that those who have helped to perpetrate the Great Lie of Lyme be facing charges for Crimes Against Humanity.

We won't be doing that either this coming Tuesday.

So why should we keep putting up, showing up, and standing up against all odds? It's not as if we're successful, the trumpet will sound and suddenly Lyme will be recognized for all that it is; and treated as such. Ticks will not just up and disappear from the planet; and no matter what, some of us will never really get well. There are also some of us who will completely succumb to this illness.

Why should anyone take off work; or for those of us who are literally bedridden most of the time, find some way to participate?

Because we are all there is for now, and tomorrow needs us...and this is just the next step of getting to where we need to be.

If we don't show up, how will it ever stop? History has demonstrated that for great change to happen; great effort over many years by many people was required. Great change generally happens slowly; sometimes there are leaps, but they never occur without the years of plodding along against all reason. Great change also includes great sacrifice.

If those who began the civil right movement did not keep going, where would we be today? Oftentimes, those who began to help to make the change were not alive later to experience it, yet they kept showing up anyway. We now call that history; but for those who endured, it was just hell. Many of us can relate to that.

Just think of the last 60 years or so - from slavery to the holocaust. and every other great horror that was perpetrated against a people. It took years of enduring and/or years of work by ordinary people living in a horrendous circumstance who simply did not quit.

And here is the real clincher for me; that today; just as I was finally able to get out of bed and up onto my PC; someone else was just bitten. Someone's mother or father, brother, sister, friend, child, partner - is, today, about to begin the 8 years I've been living, or the 2 or 5 or 15 years you've had to live. The years that no human being ought ever have had to live. To be a chronically ill person is more than enough; but the lies, the deceit, the utter disregard for humanity and all that occurs in Lyme disease is against everything that any decent human could even imagine.

So, for me, the answer is that the thought of not participating, and thereby allowing it to continue, is not an option. We each have to pick our battles; we all cannot show up for everything, but many of us can. I imagine some child beginning the years that I have had to live since 1995, and it is simply unbearable. I begin to think of what I call the "Someone's"...

Right now, somewhere in the world, someone's child will be misdiagnosed. Someone's insurance company will deny treatment. Someone's physician to be, who is currently a medical student, will hear that Lyme is easy to treat and cure. Someone's teacher does not understand why a student is not like the others. Someone will die. Someone is wondering if there is any reason at all to try to stay alive. Someone lost their house, someone declared bankruptcy, and someone is moving back in with their family. Someone learned that there is a medicine that can help them, but has no way to buy it.

Someone just got diagnosed with MS, AlS, Alzheimers, Lupus, Sarcoidosis or a variety of other illness and will never learn that they may actually have Lyme, and at least a chance at a better life. Someone will have to live in terrible pain. Someone will be told that his or her complete disability does not exist. Someone will be told that they are malingering. Someone will hear someone they love tell them they don't understand; or even worse, never hear it, but know that it is true. Someone will spend most or all of their time, money and energy pouring their own soul into getting help for someone they love. This is just a drop in the bucket from a patient's perspective.

Also today, an unchecked, authoritarian medical board that is acting in the interest of a powerful few, rather than the many will target some physician who has the courage and moral imperative to do the right thing. These ``unusual'' physicians will be ridiculed by peers, or at least be seen as being on the fringe. They will likely never experience the real fruit of their many years of hard work and compassion by being recognized in the way that they would have otherwise, had they not chosen to deal with those who have Lyme disease.

They will see that other physicians are well rewarded for keeping the status quo. These other physicians- that get huge federal grants from our governmental agencies, large cash incentives by the insurance industry to review a medical record of a very sick person, and get well paid to lie. These other physicians that will be protected by the very agencies that are charged with the power and responsibility for the care of our nation's health to keep the Great Lie going. Further, if these others are willing to do more and write papers to that effect, they will gain the respect of some of the best journals and many "well-known" medical leaders. After years of education and training, how is that for a choice?

I wish I had at least been doing better, enough so that we could have pooled our beleaguered resources to make this lobby attached to a rally just a we did the first time here in NY. It was a sight to see and quite something to experience. From most every state, lyme patients from across the country all in Albany - all together.

So if there is no great end in sight, why bother?

There are so many reasons; and we all know them. I have just touched on a few.

The answer is really very simple; because we must. That is why we need to keep showing up. Because even if it feels like just a drop in a bottomless bucket, we all know that someday, the bucket will fill.

And wherever we are on that day, I am certain that somehow, we will all know, no matter where any of us may be.

Please join us in Albany on Tuesday, May 18, 2004, and help pass two bills in New York that have huge ramifications for all Lyme disease patients.

Below is information that Ellen has put out in case you have missed it.

Be well - in whatever way you can.

Sincerely,
Regina
[email protected]

FROM ELLEN:

We desperately need a strong turnout on lobby day!!

PLEASE join us in Albany on Tuesday, May 18 to lobby for passage of 2
very important bills. If you haven't signed up, please contact the
representative from your area right away. Tell them you will be going
and, if needed, talk with them about transportation.

You will be in groups with others, and details on how to lobby will be
provided to all who attend. We really need to get these bills passed!
We encourage you to join us regardless of whether or not you have
lobbied before.

To SIGN UP by phone or email:

1) In Westchester: Contact Dawn at 917-319-2591: Email at
[email protected] To carpool, call Linda at 914-737-4331 (answering
machine will say personalized counseling) or 739-2997
2) In NYC: Call Bob at 917-363-4162:
3) On Long Island : Call Anna at 631-331-3940; Email at -
[email protected]
4) In Dutchess County: Call Lia at the Hudson Valley Lyme Disease
Association 845-486-7099; Email at - [email protected]
5) All Other Areas: Call Ellen at 212-799-2554; Email at -
[email protected]

Flyer and more info at: http://www.lymeinfo.net/lobbyday2004.html

Please sign up for lobby day if you haven't already!
-----------------------------------------------
To those who have signed up:

We will be meeting in Hearing Room C, 2nd floor of the Legislative
Office Building. There will be someone there to organize you starting
at 10:15 am and continuing for the rest of the day.

Each person attending **MUST BRING A PHOTO ID** to park AND to enter
the building.

We will be sending you details on what to say and what legislators you
will be meeting with. For now, here are the directions and parking
information.

There is a parking map at the website listed below. There won't be
reserved parking. You can park under the plaza in visitor parking P-3
North or P-3 South. After parking, take the elevator up to the
concourse and follow directions to the LOB. The buildings are
connected inside. (Overflow parking is in the Grand Street lot).

**
http://assembly.state.ny.us/directions/

DIRECTIONS AND PARKING:

Directions and Maps
The New York State Assembly chambers are located in the Capitol
Building. Most Assembly offices are in the Capitol, Legislative Office
Building and Agency Building 4. These buildings are all part of the
Empire State Plaza complex in downtown Albany, New York.

The Empire State Plaza also houses many State agencies and
commissions, as well as the Empire State Plaza Convention Center, New
York State Museum and Empire Center at the Egg.

DRIVING DIRECTIONS

From the North: Take Interstate 87 (Northway) to Interstate 90 (East)
exit, proceed east to Interstate 787 and take Empire Plaza exit.

From the South: Take New York State Thruway (Interstate 87) to Exit 23
- straight through Toll Booth to Interstate 787, then take Empire
Plaza exit.

From the East: Take Interstate 90 and cross Hudson River. Take exit to
Interstate 787 South, along river. Take Empire Plaza exit.

From the West: Take the New York State Thruway (Interstate 90) to Exit
24 (Albany), proceed east on Interstate 90 to Interstate 787 South,
along river. Take Empire Plaza Exit.

VISITOR PARKING

This is a truly amazing and eloquent representation of the importance of continuing to show up.

I hope to see everyone reading this in Albany on the 18th.

Mo

see you there mo;

and mino; for one someone from another; you'll be with us this day wherever your body may be...

thanks for your help and support.

I just want you to know, that your post has moved me...

to tears; for I weep for you and for so many others that suffer continuously...needlessly.

to action; for I can NOT idly sit by...while this atrocity continues.

to persevere; for I know that all who will be there in body...will be joined by countless others in spirit.

You inspire me to want to continue for so many reasons...

Thank you.

Melanie

and thanks for all that you do.

It felt so wonderful when I was able to help out. Wish I could of done so much more, but my thoughts and prayers will be with ya'll.

your help is greatly appreciated.

Are there any New Yorkers left on this board?

Anyone willing to come to Albany and stand up for Starr? For Mel? For Mino?

They are not from New York, and we know from experience that while non-New Yorkers are very effective for a rally, the actual lobbying needs to be done mainly by constituents.

Isn't there anyone left here from New York that can find a way to make some time and stand up for everyone else here?

New York is central to everyone's treatment: if we can pass these bills, the ramnifications will spread like a wave across the country.

New York is the epicenter for targeting LLMD's.

If WE begin to loose them again; where will anyone go for diagnosis? treatment? Every single state will be impacted by this.

New Yorkers; trust that I know that it's a hard thing to do; many are sick, and some are trying to keep on working.

Can anyone else make the time to help everyone else out there who cannot come here and participate in something that effects each and every one of us?

Please choose to exercize the power that you have; if not for yourself, than for everyone else.

Please look at the first post in this thread, and make the commitment by making the call and say you'll come.

You just have to call and get there. There are vans going from several points; carpooling, and you don't have to say a word; you just need to call and say you'll show up.

Please think of what it all really means...for yourself, for those you know who are already sick, and for those who will become infected today, tomorrow, and for the years to come until the whole truth is told.

Please choose to be part of the solution. Pick up that phone and make the call; I'll be there with you, and we'll get through the day the best that we can. I cannot travel alone either; I've asked for help and am getting there with the assistance of others.

Stand with us. You can even lean if you need to. Just come.

Sincerely,
Regina
[email protected]

Here; I'll make it a little easier; here's the information from Ellen again

FROM ELLEN:

We desperately need a strong turnout on lobby day!!

PLEASE join us in Albany on Tuesday, May 18 to lobby for passage of 2
very important bills. If you haven't signed up, please contact the
representative from your area right away. Tell them you will be going
and, if needed, talk with them about transportation.

You will be in groups with others, and details on how to lobby will be
provided to all who attend. We really need to get these bills passed!
We encourage you to join us regardless of whether or not you have
lobbied before.

To SIGN UP by phone or email:

1) In Westchester: Contact Dawn at 917-319-2591: Email at
[email protected] To carpool, call Linda at 914-737-4331 (answering
machine will say personalized counseling) or 739-2997
2) In NYC: Call Bob at 917-363-4162:
3) On Long Island : Call Anna at 631-331-3940; Email at -
[email protected]
4) In Dutchess County: Call Lia at the Hudson Valley Lyme Disease
Association 845-486-7099; Email at - [email protected]
5) All Other Areas: Call Ellen at 212-799-2554; Email at -
[email protected]

Flyer and more info at: http://www.lymeinfo.net/lobbyday2004.html

Please sign up for lobby day if you haven't already!
-----------------------------------------------
To those who have signed up:

We will be meeting in Hearing Room C, 2nd floor of the Legislative
Office Building. There will be someone there to organize you starting
at 10:15 am and continuing for the rest of the day.

Each person attending **MUST BRING A PHOTO ID** to park AND to enter
the building.

We will be sending you details on what to say and what legislators you
will be meeting with. For now, here are the directions and parking
information.

There is a parking map at the website listed below. There won't be
reserved parking. You can park under the plaza in visitor parking P-3
North or P-3 South. After parking, take the elevator up to the
concourse and follow directions to the LOB. The buildings are
connected inside. (Overflow parking is in the Grand Street lot).

** http://assembly.state.ny.us/directions/

DIRECTIONS AND PARKING:

Directions and Maps
The New York State Assembly chambers are located in the Capitol
Building. Most Assembly offices are in the Capitol, Legislative Office
Building and Agency Building 4. These buildings are all part of the
Empire State Plaza complex in downtown Albany, New York.

The Empire State Plaza also houses many State agencies and
commissions, as well as the Empire State Plaza Convention Center, New
York State Museum and Empire Center at the Egg.

DRIVING DIRECTIONS

From the North: Take Interstate 87 (Northway) to Interstate 90 (East)
exit, proceed east to Interstate 787 and take Empire Plaza exit.

From the South: Take New York State Thruway (Interstate 87) to Exit 23
- straight through Toll Booth to Interstate 787, then take Empire
Plaza exit.

From the East: Take Interstate 90 and cross Hudson River. Take exit to
Interstate 787 South, along river. Take Empire Plaza exit.

From the West: Take the New York State Thruway (Interstate 90) to Exit
24 (Albany), proceed east on Interstate 90 to Interstate 787 South,
along river. Take Empire Plaza Exit.

VISITOR PARKING

We need New Yorkers to present the material, but just in case there is anyone from out of state who can make the trip, you certainly can join a group of New Yorkers.

They do not ask if everyone is from New York while you are with a group of New Yorkers...

therefore if anyone from Out of State can make the trip, please feel free.

There just wasn't the manpower to do a big out of state component this time, but that does not preclude anyone from joining up with New Yorkers in a meeting. They do not ask where everyone is from, and if you can make the trip, it is certainly in everyone's interest that these bills get passed sooner rather than later.

My group of three will be darkening a few doorsteps..

It will be a bit of a challenge, with the two kids, but I feel my son will come out of the day with a good education in standing up for what's right.

We're making the trip precisely because of everything Regina put into words..want to thank her again for putting forth such a moving summary of what's at the heart of the matter.

"If we don't show up, how will it ever stop? History has demonstrated
that for great change to happen; great effort over many years by many
people was required. Great change generally happens slowly;
sometimes there are leaps, but they never occur without the years of
plodding along against all reason. Great change also includes great
sacrifice."

Thank you for reminding us, Regina...from what I have seen..the grassroots efforts of the Lyme community involved in this movement have made a few leaps..to the senate floor in only three years time. Collectively, maybe we can make another one on Teusday.

Mo

Yes..out-of-staters..please join us!

Thanks mo;

and I just found our first out-of-stater sizzled is coming.

I can promise you that you may feel tired at but you'll be really glad you came. You will get more from it in your own empowerment than you may think.

I've been to several Connecticut events, including the recent hearings, and was really glad I went.

I was fried as a potato chip, but it was wonderful to be doing something positive with others, good to see lots of people I hadn't seen since the last big thing, and knew that just another body in the room made a difference.

Does anyone else want to feel a little more empowered, meet up with other Lyme patients, and help push these 2 critical bills?

Sorry I missed your post;

We'll be thinking of you as well...

So who else is coming from Lymenet; New Yorkers or out of staters that can make the trip...

Come and attend the meetings and lets kick some OPMC butt...

Is anyone else available to make sure that they don't go after Joe B. again? They can do that, you know. They have no one to answer to, and there aren't many rules for the OPMC; there's just us

We have about 8 LLMD's left here...2 are currently under investigation. How many more can we loose-and what will that mean if there's no one left to write guidlines; to refer to; to write protocols; to be part of Ilads; to treat patients?

You may not realize how very important this is to each and every Lyme patient but it is critical to get these bills passed.

The sooner they are passed, the sooner we can get out of defensive mode and on to more substantial issues.

Join us!

Sincerely,
Regina

What would we do without YOU!!!!!!!

Mo

see you tomorrow.

I'm being transported back home to NY this afternoon, so I'll be offline until at least the weekend.

Those who can join us; please do.

I'll be thinking of all of you.

Regina, your conviction is astounding.

We'll see ya there!

Hope everyone who can possibly make it will join us! Everybody else..your well wishes have helped allot...we surely need it.

Mo