denial

[Guest guest]

,

What about orals? There are wonderful oral antibotic that you can be on

until you figure out what to do about IV. Zithrmax,Bacxim,Suprex,Doxy, and

bicillan injections are justs a few I have been on under the care of a LLMD.

There are also anti-virals that they can put with them. I forget the one I'm

own. Lyme brain!!!! I know it's red. Also my doc said they talked alot

about flagell at the confeence. I hope this helps.

Chrisitne

[Guest guest]

Ira maurer has a huge BC/BS case coming up in may for refusal to pay by

ins companies. Why don't you contact him at lymelawyer@...?????

Try to hold on. If he wins this case, a precedent will finally be set!

Hugs,

Alison

--

[Guest guest]

--- ranlin@... wrote:

> From: ranlin@...

>

> I was informed today that my insurance co. is

> refusing to pay for any more of my I.V. I know

> about appeals, but has anyone gone directly to a

> Lawyer. I have been off from my I.V. meds for 1

> week and I am already regressing...I have cried all

> day....I need the meds....

>

> -

Im going thru the same thing. Mine wouldnt even pay to start mine and

yes i went directly to a lawyer. In fact I am calling him tomorrow to

take all the info he requested in so we can get going on this. You

should contact a good malpractice or ins lawyer. Where do you live? It

took me 2 different guys to get the right one. Almost as hard to find a

good lawyer as it is a good Lyme doc. Good luck.

Let me know how it turns out and i will keep you all posted on my

progress------------------------------------------------------------------------

>

[Guest guest]

,

I just posted an article to this list regarding " Fighting your Insurance "

Before you spend money on a high priced attorney, maybe you want to consider

this. Ira Maurer is a Lyme attorney and has a web site at Lymenet. Here is

the URL: http://flash.lymenet.org/

When the page comes up, scroll up the bar on the left side, click on LAW.

That will bring up Ira's Page. Then you can read about other cases that

have been brought against insurance companies and employers, and decide

whether you want to get involved right away in a lawsuit,

Best to you,

Marta

[Lyme-aid] Denial

>From: ranlin@...

>

>I was informed today that my insurance co. is refusing to pay for any more

of my I.V. I know about appeals, but has anyone gone directly to a Lawyer.

I have been off from my I.V. meds for 1 week and I am already regressing...I

have cried all day....I need the meds....

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi Marta,

thanks for the insurance information. I have a couple in my support group

that are having problems. I will get a them a copy right away. Hope all is

doing well, I just worked from 7:30am to 9:30pm at school. Boy was I tired

when I got home. Almost too tired to sleep. So I am trying to do my mail

and go take a nap.

Hugs to all,

Connie

[Guest guest]

Dear , We just found out our insurance is denying IV treatment also.

It has been one week for Annie off of the IV and she is also slipping. We

are trying to appeal and also have contacted a lawyer. We have Health Net

insurance, I will let you know what we find out. Try to stay on oral

antibiotics in the mean time. Good luck Meg

From: ranlin@...

>

>I was informed today that my insurance co. is refusing to pay for any more

of my I.V. I know about appeals, but has anyone gone directly to a Lawyer.

I have been off from my I.V. meds for 1 week and I am already regressing...I

have cried all day....I need the meds....

>

>------------------------------------------------------------------------

>

[Guest guest]

Marta,

I just received your message on lawsuits...I have been in Fl. Thank you

for the info...

[Lyme-aid] Denial

>

>

>>From: ranlin@...

>>

>>I was informed today that my insurance co. is refusing to pay for any more

>of my I.V. I know about appeals, but has anyone gone directly to a Lawyer.

>I have been off from my I.V. meds for 1 week and I am already

regressing...I

>have cried all day....I need the meds....

>>

>>------------------------------------------------------------------------

>>

[Guest guest]

Marta,

Thank you for the info on lawsuits. I just returned from Fl. So I am

backed up on messages....God Bless you..

[Lyme-aid] Denial

>

>

>>From: ranlin@...

>>

>>I was informed today that my insurance co. is refusing to pay for any more

>of my I.V. I know about appeals, but has anyone gone directly to a Lawyer.

>I have been off from my I.V. meds for 1 week and I am already

regressing...I

>have cried all day....I need the meds....

>>

>>------------------------------------------------------------------------

>>

[Guest guest]

Donna-

Having met and interacted with you.... it really AMAZES me that you ever

felt that way!! It's almost amusing!!! Well. Im glad that things changed b/c

we NEED you!!! ha-ha.

That's great that someone asked about the conferece. I always loved how AJAO

gives the chance to spead the word about JA.

In Washington DC, my mom came with me. She met a woman who worked at the

hotel who had been dx. with lupus and knew nothing about her condition.

Because of the AJAO conference, she was able to connect with the AF. My

mother talked with her a long time and I was amazed b/c sometimes my mom is

antisocial and doesnt really look to be 'educated' about JA.... i know that

sounds bad or wrong... but its the best way I can describe it... lol. So I

wa impressed that she was teaching someone about these conditons and helping

them get connected.

The funniest expereince I have had involving 'others' at AJAO was in Seatle.

My friend , , a newbie and myself got to the hotel before most

of the crowd arrived. So the banner for the Arthritis Foundation was up. My

friends and I decided to go check out the mall and we got this young cute

driver who was flirting with us?

Anyways, he ended up picking us up to return to the hotel and as we got

there, he said.... " Call me any time... " besides 'it's going to be REALLY

boring around here because there's going to be nothing but OLD people here

for some Arthriitis conference!!!!

OMG, we all laughed soooooooooooooooooo hard and the guy had NO idea what he

said. It took awhile before we could 'inform' him of his errors... lol...

Anyways. Im glad you got out of your denial.. hehe

Issadora

On 7/27/06, ajaoky@... <ajaoky@...> wrote:

>

> Issie, like your friend I did not want to be around other people. I

> always

> thought I was not " like them " . When I attended my first AJAO in 1998 it

> was

> horrible the first 24 hours! I was ashamed, I was embarrassed, and more

> than

> anything I didn't belong with those people! I went in the bathroom and

> cried. I

> called my parents (keep in mind I was 32!) and begged for them to send me

> money to get me back to KY and my " normal " world. As I would walk the

> lobby or

> hallways I would sneak peeks out of the corner of my eyes and think I am

> not

> like them, why am I here? I also would look and see such similarities and

> think OMG, they are like me. I never said I was like them but they were

> like me

> and that was a step in the right direction.....look at me now! While in

> Atlanta, an older woman was in the restroom and stopped to ask me what

> kind of

> conference was taking place because there was a lot of people " like me " . I

> take

> pride in this statement now, PEOPLE LIKE ME- it translates into people who

>

> know me, they know my life, my ups and downs , my trials and tribulations,

> they

> know how to wear a smile when a frown would be so easy. They can smile in

> the

> face of adversity and more than anything they can be my friends, my

> extended

> family and people I want to be around!

> I am not sure if this is a form of denial to feel the way i did and many

> do,

> but I know for me, I had learned to live life with what I was given so I

> simply kept on keeping on and didn't really stop to consider anything

> about my

> disease. I did not even know I had JRA, much less polyarticular. I have

> become

> much more educated as a result of the AJAO but more importantly I am not

> alone now......

> enough of this or I will start to mourn from missing everyone.

>

> Hang tight , Hang tough

> Donna

>

>

[Guest guest]

Issadora,

You should have taken a picture of him when he said that lololol. The

moment right?

You girls needed to give him the 101 JRA class. But knowing she

would have looked at me and we would have said you should change the way you

see

Arthritis. It's not a Elders Disease. and Me would have taken our

sweet time getting out of the cab and walked real slow once we got out. Then

looked back and said SEEEEEE then run like the dickens. I guess it is that this

Disease can get so serious. That if we do not laugh it will take a toll on

it. I might have left a pamphlet on the back seat for him to read about Kids

get arthritis too. But and Me laugh sometimes soooooooooooo hard.

About the littlest things just to get things out.

Robbin

[Guest guest]

Hi,

I guess this should have been my opening message the other day. As a grandma (he

calls me Mimi), and main babysitter of our 3 1/2 yr old grandson, the biggest

problem is that his mother (my husbands daughter) is in complete denial

regarding his diagnosis.

The rest of us are positive he has AS and are anxious to get him and ourselves

all the help possible, but my hands are somewhat tied since I don't want to over

step my bounds.

There are two others in her mother's family with AS, but she refuses to believe

that her son has it.

It's been 5 months since his diagnosis and we've been gently pushing her to get

him help but nothing has happened. I guess my question to you parents out there

that have accepted the way things are, is: how much time do I give her before

pushing harder???

I should also mention that her 18 month old was born with Noonan's Syndrome

(very devastating) so she's had a lot to deal with already.

Becky

[Guest guest]

What does your son think about all of this? I'd think it's really between him and her. If you have an opinion on it, I'd share it with your son and leave it at that.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: becky.desimone <becky.desimone@...> Sent: Wed, January 6, 2010 3:36:19 PMSubject: ( ) denial

Hi,I guess this should have been my opening message the other day. As a grandma (he calls me Mimi), and main babysitter of our 3 1/2 yr old grandson, the biggest problem is that his mother (my husbands daughter) is in complete denial regarding his diagnosis.The rest of us are positive he has AS and are anxious to get him and ourselves all the help possible, but my hands are somewhat tied since I don't want to over step my bounds.There are two others in her mother's family with AS, but she refuses to believe that her son has it.It's been 5 months since his diagnosis and we've been gently pushing her to get him help but nothing has happened. I guess my question to you parents out there that have accepted the way things are, is: how much time do I give her before pushing harder???I should also mention that her 18 month old was born with Noonan's Syndrome (very devastating) so she's had a lot to deal with

already.Becky

[Guest guest]

Hi ,

Actually, she is my step-daughter (my husbands daughter) and her husband is no

relation to us. He is frustrated that she is in denial and looks to me for

help. My step daughter and I are very close but this is a touchy subject, to

say the least. I've decided to take it a little at a time after reading another

email. She needs to digest it little by little.

Thank you!!

>

> What does your son think about all of this?  I'd think it's really between

him and her.  If you have an opinion on it, I'd share it with your son and

leave it at that.

>  

>

>

> " Over-optimism is waiting for you ship to come in when you haven't sent one

out. "

>

>

>

>

> ________________________________

> From: becky.desimone <becky.desimone@...>

>

> Sent: Wed, January 6, 2010 3:36:19 PM

> Subject: ( ) denial

>

>  

> Hi,

> I guess this should have been my opening message the other day. As a grandma

(he calls me Mimi), and main babysitter of our 3 1/2 yr old grandson, the

biggest problem is that his mother (my husbands daughter) is in complete denial

regarding his diagnosis.

>

> The rest of us are positive he has AS and are anxious to get him and ourselves

all the help possible, but my hands are somewhat tied since I don't want to over

step my bounds.

>

> There are two others in her mother's family with AS, but she refuses to

believe that her son has it.

>

> It's been 5 months since his diagnosis and we've been gently pushing her to

get him help but nothing has happened. I guess my question to you parents out

there that have accepted the way things are, is: how much time do I give her

before pushing harder???

>

> I should also mention that her 18 month old was born with Noonan's Syndrome

(very devastating) so she's had a lot to deal with already.

>

> Becky

>

[Guest guest]

It has to be so hard but I think you're doing a few right things here...1) it sounds like you're listening but not being overly aggressive at this point. It can be hard to accept that something is wrong. 2) you're becoming as informed as you can about Aspergers so hopefully, when the family is ready, you'll be a great source of knowledge for them. I'm not sure where you live, but if she ever becomes open to it, you might be able to take him for testing at your nearest public school. My son qualified for pre-school through the school system for a few months, which helped me get introduced into how everything works and he was able to get some free help too. Unfortunately, I didn't know about this until school was almost out for that year so the assistance was minimal, but once he turns 4, he might be eligible to be tested. You might contact the special

education department in your school district to learn more. Good luck!

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: becky.desimone <becky.desimone@...> Sent: Wed, January 6, 2010 9:21:04 PMSubject: Re: ( ) denial

Hi ,Actually, she is my step-daughter (my husbands daughter) and her husband is no relation to us. He is frustrated that she is in denial and looks to me for help. My step daughter and I are very close but this is a touchy subject, to say the least. I've decided to take it a little at a time after reading another email. She needs to digest it little by little.Thank you!!>> What does your son think about all of this?  I'd think it's really between him and her. If you have an opinion on it, I'd share it with your son and leave it at that.>  > > > "Over-optimism is waiting for you ship to come in when you haven't sent one

out." > > > > > ____________ _________ _________ __> From: becky.desimone <becky.desimone@ ...>> > Sent: Wed, January 6, 2010 3:36:19 PM> Subject: ( ) denial> > Â > Hi,> I guess this should have been my opening message the other day. As a grandma (he calls me Mimi), and main babysitter of our 3 1/2 yr old grandson, the biggest problem is that his mother (my husbands daughter) is in complete denial regarding his diagnosis.> > The rest of us are positive he has AS and are anxious to get him and ourselves all the help possible, but my hands are somewhat tied since I don't want to over step my bounds.> > There are two others in her mother's

family with AS, but she refuses to believe that her son has it.> > It's been 5 months since his diagnosis and we've been gently pushing her to get him help but nothing has happened. I guess my question to you parents out there that have accepted the way things are, is: how much time do I give her before pushing harder???> > I should also mention that her 18 month old was born with Noonan's Syndrome (very devastating) so she's had a lot to deal with already.> > Becky>

[Guest guest]

Hi ,

We're in SE Michigan (downriver area). Her husband & I were able to nudge her

into having him tested in the school district. She did not tell them about his

diagnosis though. He does qualify for the ECDD pre-school but she hasn't

enrolled him yet. He'll be 4 in May. It helps so much to hear from you. I'll be

patient with her.

Becky

> >

> > What does your son think about all of this?  I'd think it's really

between him and her.  If you have an opinion on it, I'd share it with your

son and leave it at that.

> >  

> >

> >

> > " Over-optimism is waiting for you ship to come in when you haven't sent one

out. "

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: becky.desimone <becky.desimone@ ...>

> >

> > Sent: Wed, January 6, 2010 3:36:19 PM

> > Subject: ( ) denial

> >

> >  

> > Hi,

> > I guess this should have been my opening message the other day. As a grandma

(he calls me Mimi), and main babysitter of our 3 1/2 yr old grandson, the

biggest problem is that his mother (my husbands daughter) is in complete denial

regarding his diagnosis.

> >

> > The rest of us are positive he has AS and are anxious to get him and

ourselves all the help possible, but my hands are somewhat tied since I don't

want to over step my bounds.

> >

> > There are two others in her mother's family with AS, but she refuses to

believe that her son has it.

> >

> > It's been 5 months since his diagnosis and we've been gently pushing her to

get him help but nothing has happened. I guess my question to you parents out

there that have accepted the way things are, is: how much time do I give her

before pushing harder???

> >

> > I should also mention that her 18 month old was born with Noonan's Syndrome

(very devastating) so she's had a lot to deal with already.

> >

> > Becky

> >

>

[Guest guest]

Unless the parents have 'issues' themselves, I can't imagine that they don't

realize that their child's behaviors are not typical. I didn't see any reference

to the age of the child, but some parents seem to believe that their children

will somehow outgrow behaviors on their own or by natural consequences.

Otherwise, maybe these parents do realize that their child has issues, but is

embarrassed or afraid and is trying to avoid facing it by rationalizing the

behaviors.

If it is awkward to deal with directly or by sharing info about your own child

or via a book or something (if this could bring them to the realization that

their child meets the criteria for AS), maybe you will want to be certain to not

allow the children to be out of your sight. This way, at least you can

personally monitor the interactions between their child and your own and

intervene when necessary. Best wishes to you! -Kari

>

> Hello group,

> I've been very busy and couldn't post for awhile, and just started

> reading some of your post again.

> Has anyone experienced someone in complete denial with their childs

> concerns and keepted making many excuses for their childs

> inappropriate behaviours or put the blame on you or others to take

> the focuse off of their own childs issues? I have a child with a

> DX of Aspergers. This persons child has issues that relate or more

> inappropriate then my childs, more extreeme. very controlling,

> during free time becomes verbally mean, immature, if doesn't get own

> way, will have a " complete meltdown " . lies - even when caught,

> perservates (repeats over & over till child gets what child wants),

> and wont play with other children unless they will play what " that "

> child wants to play, then will change rules to win. but, each and

> every issue, the parents come up with a very good excuse for each

> behaviour that child has to " justify " the childs inapproiate

> behaviour. which enables the child to continue that behaviour.

> When the child lies to the extreme. the parents will say, all

> children lie. but not to the profession this one has established.

> Controlling issues -(excuse)child is trying to be a teacher???

> meltdowns,(excuse) everyone has a bad day??? yeah, each time the

> child doesn't get what they want. Parents have excuse after excuse.

> Parents have learned to make excuses for their child to the

> perfection too. if you experienced this. What have you done or said

> to keep a relationship with that family? and why would a parent make

> up so many excuses for their child and not teach them or get them

> professional help????

>

[Guest guest]

There's a least a chance that the kid is just spoiled. It might not be something that can be "diagnosed."

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: jmlrgs1870 <jmlrgs1870@...> Sent: Fri, January 8, 2010 12:26:22 AMSubject: ( ) Re: denial

Unless the parents have 'issues' themselves, I can't imagine that they don't realize that their child's behaviors are not typical. I didn't see any reference to the age of the child, but some parents seem to believe that their children will somehow outgrow behaviors on their own or by natural consequences. Otherwise, maybe these parents do realize that their child has issues, but is embarrassed or afraid and is trying to avoid facing it by rationalizing the behaviors. If it is awkward to deal with directly or by sharing info about your own child or via a book or something (if this could bring them to the realization that their child meets the criteria for AS), maybe you will want to be certain to not allow the children to be out of your sight. This way, at least you can personally monitor the interactions between their child and your own and intervene when necessary. Best wishes to you! -Kari>> Hello group,> I've been very busy and couldn't post for awhile, and just started > reading some of your post again.> Has anyone experienced someone in complete denial with their childs > concerns and keepted making many excuses for their childs > inappropriate behaviours or put the blame on you or others to take > the focuse off of their own childs issues? I have a child with a > DX of Aspergers. This persons child has issues that relate or more > inappropriate then my childs, more extreeme. very controlling, > during free time becomes verbally mean, immature, if doesn't get own > way, will have a "complete meltdown". lies - even when caught,

> perservates (repeats over & over till child gets what child wants), > and wont play with other children unless they will play what "that" > child wants to play, then will change rules to win. but, each and > every issue, the parents come up with a very good excuse for each > behaviour that child has to "justify" the childs inapproiate > behaviour. which enables the child to continue that behaviour. > When the child lies to the extreme. the parents will say, all > children lie. but not to the profession this one has established. > Controlling issues -(excuse)child is trying to be a teacher??? > meltdowns,(excuse) everyone has a bad day??? yeah, each time the > child doesn't get what they want. Parents have excuse after excuse. > Parents have learned to make excuses for their child to the > perfection too. if you experienced this. What have you done or said

> to keep a relationship with that family? and why would a parent make > up so many excuses for their child and not teach them or get them > professional help????>