hello

[Guest guest]

Hi,

I was wondering did you go on an antihistimine for the inflamation?

[Guest guest]

,

No, I really just learned about the possibility of antihistamines helping in the past two weeks, thanks to this group, and I want to talk to my doc about it. I have an appointment today ;?) I will let you know what she says. So far, I have only been on Clobetasol, which sucked, and the ointment form of Clobetasol, Triamcin (.1%). The doc also prescribed Elavil, but I don't want to take antidepressants.

Kirstyn

Re: hello

Hi,I was wondering did you go on an antihistimine for the inflamation? *****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Welcome to the group, hope2bcured,

I'm sorry you have a need to be here with us, but welcome you just

the same. My name is Meg; 27 years old, married, no kids yet, dx

with endometriosis, vulvar vestibulitis, interstitial cystitis, and

other things as well....We all understand how difficult this stuff

can be to talk about...I suffered for 8 mos. in almost contant pain

from the vulvar vestibulitis before making a doctor's appt. I really

thought there was something wrong with me mentally (as if I needed

any help in that dept.!) (-: It was great when the doctor even sat

my husband down in his office and explained to him how pain could

even make me fear being intimate and that he needed to be supportive

and patient while we figured this out. Anywas, that's some of my

story. Feel free to read all you want before posting--I read quite a

bit before posting too. Again, I'm glad you're here. I hope you'll

be feeling better soon. Take care.

Hugs,

Meg

BTW--If you would feel more comfortable getting started with chatting

by emailing privately a time or two, feel free to email me

privately. mrsfru@... I'm also sure that someone else would

be happy to post privately to you also, until you feel more

comfortable.

> Hi everyone,

>

> Just joined the group. Very thankful to finally have some support.

> Want to chat, but kind of scared, given sensitive subject for me.

> Will just watch for a bit... talk later.

[Guest guest]

Thank you!!!! It worked!

Tammie

Hello

I just wanted to say hello

and try to put a smile on your face today.

[Guest guest]

Thank you!!!! It worked!

Tammie

Hello

I just wanted to say hello

and try to put a smile on your face today.

[Guest guest]

WOOHOOO!! So Glad to hear it! Thank you!!!! It worked! Tammie I just wanted to say hello and try to put a smile on your face today.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

[Guest guest]

WOOHOOO!! So Glad to hear it! Thank you!!!! It worked! Tammie I just wanted to say hello and try to put a smile on your face today.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

[Guest guest]

Dear Ms. Delegal:

My affiliation to the Autism community is I am the father of a 24 year old daughter on the spectrum and I am also the president of the Autism Society of Florida. I find it odd that you ask, since you mention the Autism Society of Florida later in your email. Furthermore, the Autism Society f Florida has not been silent on this issue, quite to the contrary. We have been advocating and supporting this and similar insurance bills for the past 10 years, that Autism Speaks only this year came forward to support.

I also find it interesting that comments have been made from your area about me and the Autism Society of Florida being silent on the issues, but none of those comments were made to me directly, until today. I have only heard them through others that have received those correspondence. If someone has something to say, they should say it directly to me (as you have). I have no problem explaining my actions on behalf of the autism community.

Just to give you a little history, I have been advocating for the past 10 years to get an autism insurance bill passed. Every year the Senate has passed the bill in some form and the House has not put it to the floor for a vote. When Representative Thrasher was the Speaker of the House, we had 90% of the House in favor of the bill (sound familiar?). The Speaker would not put it to the floor for a vote. That same year the bill passed the Senate unanimously. While I commend the Senate for continually supporting the Insurance bill over the years, the reality is the Senate can pass the bill the way it was presented from now until the cows come home, but if the House doesn’t pass it, then nothing happens. This has been the case for the past 10 years. I agree that the House should have passed the Geller insurance bill. I also agree that the Select Committee was formed to avoid the insurance mandate. I met with Speaker Rubio and his concern was if the bill passed as it was, only 43% would get coverage. That is a big number, but what about the other 57%? I respect that he wanted to do more, I don't agree with the way he went about it. With all that being said, I feel it is better to deal with reality and try to get relief for families regardless of how it is accomplished. Maybe I am a little cynical after all these years. I am not sure how old your child is that has autism, but mine is 24 years old and I have devoted my life to advocacy for families and trying to get the best possible services for our children and adults on the spectrum.

I agree that it would be great to have the insurance companies paying their share. I also agree that they have been getting off scott free for years. That being said, do you really think that only insurance companies should do the right thing? You don’t think it is incumbent on the state of Florida to provide appropriate services to our children?

Did you read the 61 page Gardiner amendment? It is far more comprehensive than Senator Geller’s bill (5 pages). It also has a multifaceted approach to dealing with the issue. Some members of the Senate believe it is a great effort and if funded properly it would provide much more for more families in the long run. There is an insurance compact in the bill and even though we don’t get the relief we need immediately, there will be relief within 2 years. That is a long time, when you are trying to get early intervention services today. But, if there is no compromise, we will walk away with nothing for the 11th year in a row. I am more interested in having something in statute than nothing. There is coverage through Kidcare, Medicaid; a recommendation that APD go after another waiver, an insurance compact, the McKay scholarship is expanded to cover ABA, Voluntary Pre K, Department of Education and more. Yes, it s going to cost money. The problem with the legislature is they would rather fund everglades restoration or roads than our children.

Yes, the House of Representatives should pass the bill the way it was passed in the Senate. Again, the reality is that just isn’t going to happen. There are too many in the leadership that do not support an insurance mandate. I don’t agree with those legislators. The select committee was a lofty goal with two weeks left in session. It would have been great if Speaker Rubio convened it early on in session and maybe there would have been a more constructive outcome adn time to debate.

I look forward to working with you and others to acheive the appropriate services for our children and adults on the spectrum. I understand that you are frustrated, as I am. I also understand that the amended bill has a lot of fiscal impact. But, the original bill no longer exists and it isn’t coming back. If the Senate does not come to a compromise on it and agree to something by today, we will have nothing again. This is the reality of the legislative process. It is almost as frustrating as dealing with autism.

Regards,

Ven Sequenzia

Amy's Dad &

President

Autism Society of Florida, Inc.

Regards,

Ven Sequenzia

hello

Dear Mr. Sequenzia,

I do not believe we have met and I do not know what your affiliation is with the autism community. I am a ville area advocate and have been for about a decade, though I am not as active as I have been in the past.

In recent weeks a group of several moms from ville has spent an extraordinary amount of time and energy, in concert with Autism Speaks, in pressing for passage of SB 2654 and HB 1291. We have been wondering where on earth Florida ASA has been, and why it has appeared to us so silent on this issue. Perhaps you will be able to shed light on that.

At this time, I cannot possibly support the position you have outlined in your latest email, and I will happily explain why. The House of Representatives HealthCare Council Chairman, Bean, has been against insurance parity for children with autism from the get go. I had the distinctly displeasure of speaking face to face with him in March. He sat and sat and sat on HB 1291--would not schedule it at all in his committee-- until pressure from parents made it clear that he had to do something. So he got his friend, Speaker Marco Rubio, whose brother is a lobbyist for Blue Cross, to do what politicians do whenever they want to hold up the legislative process--appoint a "select committee" to study the issue, halfway into the session.

The Select committee then came up with a plan to "broaden the scope" of the legislation, which is political speak for "water down this bill until it's unrecognizable." Under the auspices the new select committee, within the Healthcare Council, an ambitious and expensive plan to expand KidCare, our statefunded insurance program, was born. Other things were added into the bill, and yes, it did expand to cover children with other developmental disabilities. Not surprisingly, ANYTHING and EVERYTHING having to do with requiring private insurers to cover services for our children was taken out. The insurers are off the hook for at least another two years, at which point they will be asked nicely to decide whether they would like to please stop discriminating against our kids.

Now, here's the kicker: In case you haven't heard, Florida has no money. The House amendments to Geller's Autism Coverage Act, which matches the Healthcare Council recommendations above, costs money. An email came out two days ago from the Florida PTA in which cuts in KidCare were actually blamed on "having to now fund services for children with autism." So now House leaders are pitting Kidcare proponents against autism proponents. The money has got to come from somewhere, after all. I will be very surprised if the Senate passes this bill with all its expenditures.

Do you see the sleight of hand the House of Representatives just pulled off? They have ostensibly created a "comprehensive" bill--which "expands state services" (not really, they just made a shell game out of KidCare)--while letting the insurance companies off the hook once again for covering our kids--we're talking about children of premium payers.

If the bill which moves around KidCare money for autism passes, I will take it as an incremental victory for children with autism. It will mean that we made enough noise to get the word autism written into legislation, and that a limited number of children--those already covered by KidCare--will finally get services. The entire purpose of Steve Geller's original bill, however, insurance parity for children with autism, will have been lost.

I would be very interested in working with you and others in the future to make insurance parity a reality. Government is no good at getting services to kids--at least not in the ville area. This battle requires help from all of us, and insurance carriers should not be exempt just because that industry can afford better lobbyists than kids with autism.

I welcome your views.

Respectfully,

Delegal

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

Dear Ms. Delegal:

My affiliation to the Autism community is I am the father of a 24 year old daughter on the spectrum and I am also the president of the Autism Society of Florida. I find it odd that you ask, since you mention the Autism Society of Florida later in your email. Furthermore, the Autism Society f Florida has not been silent on this issue, quite to the contrary. We have been advocating and supporting this and similar insurance bills for the past 10 years, that Autism Speaks only this year came forward to support.

I also find it interesting that comments have been made from your area about me and the Autism Society of Florida being silent on the issues, but none of those comments were made to me directly, until today. I have only heard them through others that have received those correspondence. If someone has something to say, they should say it directly to me (as you have). I have no problem explaining my actions on behalf of the autism community.

Just to give you a little history, I have been advocating for the past 10 years to get an autism insurance bill passed. Every year the Senate has passed the bill in some form and the House has not put it to the floor for a vote. When Representative Thrasher was the Speaker of the House, we had 90% of the House in favor of the bill (sound familiar?). The Speaker would not put it to the floor for a vote. That same year the bill passed the Senate unanimously. While I commend the Senate for continually supporting the Insurance bill over the years, the reality is the Senate can pass the bill the way it was presented from now until the cows come home, but if the House doesn’t pass it, then nothing happens. This has been the case for the past 10 years. I agree that the House should have passed the Geller insurance bill. I also agree that the Select Committee was formed to avoid the insurance mandate. I met with Speaker Rubio and his concern was if the bill passed as it was, only 43% would get coverage. That is a big number, but what about the other 57%? I respect that he wanted to do more, I don't agree with the way he went about it. With all that being said, I feel it is better to deal with reality and try to get relief for families regardless of how it is accomplished. Maybe I am a little cynical after all these years. I am not sure how old your child is that has autism, but mine is 24 years old and I have devoted my life to advocacy for families and trying to get the best possible services for our children and adults on the spectrum.

I agree that it would be great to have the insurance companies paying their share. I also agree that they have been getting off scott free for years. That being said, do you really think that only insurance companies should do the right thing? You don’t think it is incumbent on the state of Florida to provide appropriate services to our children?

Did you read the 61 page Gardiner amendment? It is far more comprehensive than Senator Geller’s bill (5 pages). It also has a multifaceted approach to dealing with the issue. Some members of the Senate believe it is a great effort and if funded properly it would provide much more for more families in the long run. There is an insurance compact in the bill and even though we don’t get the relief we need immediately, there will be relief within 2 years. That is a long time, when you are trying to get early intervention services today. But, if there is no compromise, we will walk away with nothing for the 11th year in a row. I am more interested in having something in statute than nothing. There is coverage through Kidcare, Medicaid; a recommendation that APD go after another waiver, an insurance compact, the McKay scholarship is expanded to cover ABA, Voluntary Pre K, Department of Education and more. Yes, it s going to cost money. The problem with the legislature is they would rather fund everglades restoration or roads than our children.

Yes, the House of Representatives should pass the bill the way it was passed in the Senate. Again, the reality is that just isn’t going to happen. There are too many in the leadership that do not support an insurance mandate. I don’t agree with those legislators. The select committee was a lofty goal with two weeks left in session. It would have been great if Speaker Rubio convened it early on in session and maybe there would have been a more constructive outcome adn time to debate.

I look forward to working with you and others to acheive the appropriate services for our children and adults on the spectrum. I understand that you are frustrated, as I am. I also understand that the amended bill has a lot of fiscal impact. But, the original bill no longer exists and it isn’t coming back. If the Senate does not come to a compromise on it and agree to something by today, we will have nothing again. This is the reality of the legislative process. It is almost as frustrating as dealing with autism.

Regards,

Ven Sequenzia

Amy's Dad &

President

Autism Society of Florida, Inc.

Regards,

Ven Sequenzia

hello

Dear Mr. Sequenzia,

I do not believe we have met and I do not know what your affiliation is with the autism community. I am a ville area advocate and have been for about a decade, though I am not as active as I have been in the past.

In recent weeks a group of several moms from ville has spent an extraordinary amount of time and energy, in concert with Autism Speaks, in pressing for passage of SB 2654 and HB 1291. We have been wondering where on earth Florida ASA has been, and why it has appeared to us so silent on this issue. Perhaps you will be able to shed light on that.

At this time, I cannot possibly support the position you have outlined in your latest email, and I will happily explain why. The House of Representatives HealthCare Council Chairman, Bean, has been against insurance parity for children with autism from the get go. I had the distinctly displeasure of speaking face to face with him in March. He sat and sat and sat on HB 1291--would not schedule it at all in his committee-- until pressure from parents made it clear that he had to do something. So he got his friend, Speaker Marco Rubio, whose brother is a lobbyist for Blue Cross, to do what politicians do whenever they want to hold up the legislative process--appoint a "select committee" to study the issue, halfway into the session.

The Select committee then came up with a plan to "broaden the scope" of the legislation, which is political speak for "water down this bill until it's unrecognizable." Under the auspices the new select committee, within the Healthcare Council, an ambitious and expensive plan to expand KidCare, our statefunded insurance program, was born. Other things were added into the bill, and yes, it did expand to cover children with other developmental disabilities. Not surprisingly, ANYTHING and EVERYTHING having to do with requiring private insurers to cover services for our children was taken out. The insurers are off the hook for at least another two years, at which point they will be asked nicely to decide whether they would like to please stop discriminating against our kids.

Now, here's the kicker: In case you haven't heard, Florida has no money. The House amendments to Geller's Autism Coverage Act, which matches the Healthcare Council recommendations above, costs money. An email came out two days ago from the Florida PTA in which cuts in KidCare were actually blamed on "having to now fund services for children with autism." So now House leaders are pitting Kidcare proponents against autism proponents. The money has got to come from somewhere, after all. I will be very surprised if the Senate passes this bill with all its expenditures.

Do you see the sleight of hand the House of Representatives just pulled off? They have ostensibly created a "comprehensive" bill--which "expands state services" (not really, they just made a shell game out of KidCare)--while letting the insurance companies off the hook once again for covering our kids--we're talking about children of premium payers.

If the bill which moves around KidCare money for autism passes, I will take it as an incremental victory for children with autism. It will mean that we made enough noise to get the word autism written into legislation, and that a limited number of children--those already covered by KidCare--will finally get services. The entire purpose of Steve Geller's original bill, however, insurance parity for children with autism, will have been lost.

I would be very interested in working with you and others in the future to make insurance parity a reality. Government is no good at getting services to kids--at least not in the ville area. This battle requires help from all of us, and insurance carriers should not be exempt just because that industry can afford better lobbyists than kids with autism.

I welcome your views.

Respectfully,

Delegal

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

I'd like to share this with you all ...A little something I have on my

MS group I hope its helps cause if you believe it and everyone works

as one there isn't nothing that cant be done...

" WE MAY NOT HAVE IT ALL TOGETHER, BUT TOGETHER WE HAVE IT ALL "

[Guest guest]

Here, here!

Subject: hello

To: mscured

Date: Wednesday, July 23, 2008, 5:27 PM

I'd like to share this with you all ...A little something I have on my

MS group I hope its helps cause if you believe it and everyone works

as one there isn't nothing that cant be done...

" WE MAY NOT HAVE IT ALL TOGETHER, BUT TOGETHER WE HAVE IT ALL "