LymeNet Flash: WE DON'T COUNT!

This is topic WE DON'T COUNT! - OPMC UPDATE 6/7 in forum Medical Questions at LymeNet Flash.

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Posted by ellenluba (Member # 1707) on :

PLEASE DISTRIBUTE. THIS IS FOR EVERYONE, NO MATTER
WHAT STATE YOU LIVE IN.

Hi folks,
I'm mad and really don't want to take this garbage
anymore.

Like most of you, I've had this illness for many, many
years, most of which have been spent in bed.

I know you don't really get to plan your life, but
this is a little too far from what I'd planned.

I'm sure the reality of your life since Lyme is far
from what you expected.

We have had to fight for every little bit of progress
we have made.

We still cannot rest assured that the doctor who is
saving our lives today will be allowed to help us
tomorrow.

THE ULTIMATE (OR MAYBE ONE OF THE ULTIMATE) SLAP IN
THE FACE:

Now the ultimate slap in the face comes from some
patronizing government attorneys who have decided that
the bill we have been lobbying for is not REALLY
what's best for us.

Apparently, we were not only too stupid to know we
REALLY had fibromyalgia; we are also too stupid to
know that we will not REALLY be helped if our doctors
can protect their medical licenses.

More than 50 very, very sick Lyme patients shlepped up
to Albany a few weeks ago, and many more patients
wrote and called in the last few days.

Yet, the attorneys for the Assembly Codes Committee
still don't get that fairness for doctors can mean
fairness for patients.

In their infinite wisdom, these attorneys have either
decided that patients, in general, don't know what
they're talking about or that Lyme disease patients,
in particular, don't know what they're talking about.

They have advised Assemblyman Lentol and the rest of
the committee that the OPMC Due Process bill
S5057/A7757 helps doctors but not patients.

I mean, fifty people did not decide to spend most of
the month of May half dead in bed because they just
wanted to take a scenic tour of Albany.

If that didn't get the committee to listen, then we
have to up the numbers of people writing and calling
to the thousands.

ACTION ALERT:
Please get everyone you know to call and email
Assemblyman Lentol and ask, urge, beg him to bring
S5057/A7757 up for a vote in the Assembly Codes
Committee ASAP. Let him know that if doctors are not
given basic rights to protect their licenses , then
patients suffer.

In one way or another we want them to finally hear
that this is a patients' rights bills, that we need
our doctors.

EMAIL:
[email protected]
Be sure to sign with full name and address.

Albany Office Phone:
1-518-455-4477

District Office Phone:
718-383-7474

Ellen

Posted by valymemom (Member # 7076) on :

Thanks, Ellen

What do you really think is going to happen? And what else can we do?

I have forwarded it to email friends again.

Posted by trailsgrl (Member # 7285) on :

Here is what I wrote. What do you think ellen? I feel funny about it coz I am way out here in NM and not very educated about this bill and what is going on in NY, but I DO know that every voice counts. Did I say the right things?

Dear Mr. Lentol,

I am writing to you to ask you to please bring bill numbers S5057/A7757 up for a vote in the Assembly Codes
Committee.

It is vital for many chronically ill patients to get access to the health care provider of their choice. It is of equal importance that health care providers have a choice and a voice in how they treat their patients. Without basic rights to protect their licenses, not only will the physicians suffer, but their patients that depend on their expertise will also suffer.

This is not a doctor's bill of rights, but actually a patient's bill of rights. We, as patients depend on our physicians for the best care and treatment we can access.

Sincerely,
My whole name and address and phone number

Hope it helps you and us!
Trails

Posted by Mo (Member # 2863) on :

Everyone on Lymenet and friends/family should call and e-mail
..right?

Posted by chainsaw joseph (Member # 6611) on :

Ellen,it seems you have done so much work fighting and i greatly appreciate it,I was seeing a NY LLMD is being looked into.You ever think of going another route in the fight such as a big protest,sounds like you would be a great leader.I feel your fustration fighting the system,thank you.Its so hard for you to do all the work and its so easy for the system to just blow you off,please dont take me wrong I am just wondering if the fight should be taken in a different direction.

Posted by Mo (Member # 2863) on :

Hey Jo --

Unless I'm mistaken, I believe this is a protest she's staging right now..

and if enough people make noise (this one by calling and e-mailing, rather than traveling to a mass protest location)
..the person we are contacting is in a position to take action right away as a Senator, which would be to bump these bills up in legislature.

We (meaning the Lyme community) had the floor ans unanimous Senate support last year and it passed through to the top -
and the reason's for the Governor's rejections have been
adjusted --

of course the not so well-motivated camp will continue to throw up road blocks..
but if this Senator gets enough noise coming his way, we can hurdle this one, too.

(not that other protests in person are a bad idea.....)but Ellen's work and rounding the troops has made some big strides.
It's a fight we all have to keep on to get legislation to protect our right to treatment.

[This message has been edited by Mo (edited 07 June 2005).]

Posted by sizzled (Member # 1357) on :

We DO count! OUR KIDS COUNT!

Thank-you, Ellen, for keeping us informed.

Now....gonna make a few calls and emails...

GGGGgggrrRRRRrrrrrrrrrrrRRRRr!

Posted by Tincup (Member # 5829) on :

OUCH!

I will be sending everyone I know an email to take action... tonight.

EllenLu is NOT a happy camper. This is really bad. I don't usually see her so dang gum frustrated. We need to kick butt so she will feel better.

Hang in there buttercup. We will work on it NOW!

------------------
If you get the choice to sit it out or dance...

Posted by Tincup (Member # 5829) on :

Got 'er done!

------------------
If you get the choice to sit it out or dance...

Posted by Tincup (Member # 5829) on :

Staying up late JUST so I can bring this to the top.

That was MY job to do today.. sooooo.. I DON'T want crab face waking up seeing this on the second page!

Posted by StinkBug (Member # 5191) on :

I will write today.

Thanks,
StinkBug - bringing it from page 2 to 1 for the sleepy Tincup who deserves all the beauty rest

Posted by FightFireWithWater (Member # 5781) on :

UP!

Posted by bg (Member # 46416) on :

Ellen, I sent to both people mentioned in TC's private email she sent me with info from you.

Forwarded it to my lyme, FMS, & CFS friends hopefully for their action too.

Ellen & TC, thanks for keeping us informed.

Don't give up the fight.

bettyg, IOWA

Posted by Linda LD (Member # 6663) on :

I emailed all my Lyme buddies in East Tennessee.

I wrote a letter and was sobbing my eyes out when I finished. I've done all I know to do.

Let me know if I can help in any other way.

Linda

Posted by Ann-OH (Member # 2020) on :

Here's what I just sent. Only takes a minute.
Ann - OH
(quote)
Dear Sir,

I am writing to ask you to bring S5057/A7757 up for a vote in the Assembly Codes
Committee ASAP. Don't doctors deserve the same due process as other citizens? If doctors are not given basic rights to protect their licenses, then who suffers more than patients?

I live in Ohio, but must say, what happens in NY on this issue is being watched all over the nation and it will serve as a model for how doctors are treated in many other states. Please do not block the chance for this fair solution.

Thank you,
(end quote)

Posted by Pocono Lyme (Member # 5939) on :

e-mailed to entire list in support group also.

Thanks Ellen

Posted by Ann-OH (Member # 2020) on :

Forgot to say I sent the info and my letter out to everyone on my Ld E-list as well. Should be lots of responses from them.

I got a form response from the Assemblyman's office.

When will we know if the bill is on the move?
Ann - OH

Posted by NP40 (Member # 6711) on :

Wisconsin folks are on board. Should have seen one of the letters that a WI. support group member sent to the Assemblyman. Unbelieveable !

Posted by Tincup (Member # 5829) on :

Tanks berry mush stink bug... appreciate the break. While I was off line today.. I did my part in the fight against Lyme!

I killed ticks.. with a spray spray here and a spray spray there.. here a spray, there a spray, everywhere a spray spray.

And I killed me a few poison oak plants too!

Good thing no ducks showed their faces! Cause I am afraid in my "kill, kill" mode I would have showed NO MERCY!

Betty G.. sweet as can beeeeeeee...

Good for you! That is a great idea to send it to other groups!! Now why didn't I think of that?

Thanks!!!!

Linda.. what can I say? I am sorry it was so difficult for you. This is a sad situation we are in.. and often I try to make light of it to keep folks smiling.

But it is a serious situation indeed. We must keep our doctors by supporting them like they do us... and we must have their help to regain our health. I think we can if we all work together.

Thank you for the effort. It is VERY much appreciated... and it will make a difference.

Ann OH...

How is it you can always do in a short time what it takes me FOREVER to do or say? And.. not to mention.. end up with an excellent end product to boot?

I think it is because of your intelligence and insight. I mean how many folks KNOW that infectious disease doctors should see Lyme patients.. not rheumies? I saw your post and knew right away the ducks office had NO clue... and YOU spotted it right away. ~smile~

Ok.. I am funning with you... don't mind me. I just have to say "something" when I see what a great letter you wrote.. when mine is so funky. Thanks!!!

Po-co-no... THANKS!!! That will help a lot! I am sure EllenLu will breathe easier tonight... and not be such a crab face. Ya think? Well, we can HOPE!

NP... out in Wis consin...

Such a pretty place. One of MY favorites! And there was this boy.. with locks of golden hair... who played guitar to me in the moonlight...

Oops... nevermind!

Good to have ya'll helping! Keep up the good work!

Posted by Tincup (Member # 5829) on :

Bringing this up so the Thursday morning crew can do their "thing".

Go for it gang!

Posted by Tincup (Member # 5829) on :

One more note..

Hey Trails..

Ellen Lu isn't at her computer right now.. but I think your letter is GREAT! It is worded perfectly!

If that is your first try at this NY stuff.. You will certainly be an asset to ALL of us.

Thanks!

------------------
If you get the choice to sit it out or dance...

Posted by Linda LD (Member # 6663) on :

Up for Thursday.

Tincup I basically told him to get it moving and pass it for the children.

Heard from Dr. J--yesterday and am getting his help with children--was a little emotional to begin with--in a happy way. Can't stand the thought of someone messing with our docs.

Posted by Ann-OH (Member # 2020) on :

up.up.up!

Posted by WildCondor on :

We cannot give up now! I just dont see how they can ever win. We will win. First of all, Lyme disease is not going away, it is getting worse. The problem will just keep getting bigger and bigger until SOMETHING is done about it. It is not going away, we are not going away, and we will not suffer in silence. We just have to keep at it, and work hard, keep up our political action and spreading the word to anyone who will listen. A small group of people, can, and will make a difference. We will have our day people...just keep fighting!

------------------
Lyme Disease Help
http://www.wildcondor.com

[This message has been edited by WildCondor (edited 09 June 2005).]