Jen

[Guest guest]

Can't you go to the higher ups in the insurance company or file a complaint,

this is

not some little thing, it's important and needs to be done. I really would

put up a

fight. Are you on a HMO? that's why so many of them in New York are getting

sued and the people are winning. Keep bugging them they will get sick of you

and agree.

In the mean time don't hesitate to go to the ER if you need too. They can

hold there hand out for the co-pay. Can you get Medicaid? ( I am not prying)

just trying to find a way to help. Take care Jen - nothing bugs me more than

denying a person medical

needs espically when it's not just for a skinned knee (if you know what I

mean) I

hope you get somewhere Jen. Hugs,

[Guest guest]

Hi Jen, I am so sorry things are going badly for you, wish I could help.

About your son's braces, most all places have a monthly payment plan. You do

have to put some down but check somewhere else. I know they are important to

you and your son but if I may say so your illness could be life threating and

he can live with crooked teeth. I work for a dentist and mine sure aren't

straight, but they are mine. LOL They didn't do braces a lot when I was

growing up like they do today and at my age I couldn't stand them in my

mouth. Hope things start looking up for you and your family. God bless,

Genny/Jodi's Mom

[Guest guest]

Jen, please let your child's braces be one less thing on your plate. My

parents could not afford them for me and I was 25 before I got them myself.

The wait had absolutely ZERO affect on my life.

KK-Austin

[Guest guest]

My thoughts exactly. Whats funny that while watching the Vikings game Monday

we all noticed that Randy Moss had braces! My kid said.... " hey mom, check it

out.... my hero has braces...I bet he couldn't afford them as a kid and now

5k is like a drop in the bucket for him " . My son is so understanding.... he

says " i'll get them when I grow up if I have to " .

I guess what pisses me off is that his BIO dad hasn't paid me a dime of

child support in three years. Recentlty he admitted himself to alochol rehab

for the like 40th time. He is about 10k in back payments to me. I want to

ring his neck.

Jen

On Tue, 10 Oct 2000 23:26:36 -0500, egroups wrote:

> Jen, please let your child's braces be one less thing on your plate. My

> parents could not afford them for me and I was 25 before I got them

myself.

> The wait had absolutely ZERO affect on my life.

> KK-Austin

>

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

[Guest guest]

Jen,

You can go to the welfare department and tell them you have not received

child support. They will set you up and pay you what you should be getting

from the deadbeat father. Then the Welfare dept. will go after the father and

keep after him also capture his tax returns until he is paid up to you. In

the mean time at least you won't have to get a lawyer and you will be getting

monthly checks. You will then be able to get Medicaid for both you and your

child as well as foodstamps and they give you a pretty good amount in

foodstamps. You can also go to these food places not foodbanks but govt. food

and they give you lots of foods. Actually this could be a blessing for you.

My daughter had a baby at 18 (I wanted to beat her). Then her boyfriend and

her broke up right after the baby was delivered they fought bad dangerously

bad. She took him to court and was ordered to pay. He paid 2 checks. Then

Jodi was always sick and couldn't work so this became a disaster for her.

There is a lot of help out there for you. Take advantage of it please.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Jen I think your doctor is mistaken. Rare as it is I don't see how you could

be the only one in the whole state. You very well may be the only one he has

treated and if this is the case find someone with experience. My daughter

was referred by her gastro because he is not a liver specialist. Please

don't take offense, just want what's best for you. Take care and God bless,

Genny

[Guest guest]

Hi Genny,

Although I feel I am getting the best treatment, I do feel that I am

limited in resources. My Gastro is very knowledgeable in liver disease, not

sure how much in AIH but was the one and only one who even considered AIH as

a diagnosis when all other MD's in the past just shrugged it off or

misdiagnosed it. He stuck with it, eliminating all other causes and was

willing to look outside my alcoholism for a diagnosis.

I don't have access to a hepatologist, the liver transplant program in

NM was terminated in July of last year. I have to go out of state (told its

Cedars in Beverly Hills) for my transplant. Its not likely the program will

return anytime soon if at all.

I'm lucky that my Gastro hasn't left the state seeking more pay as many

many other MD's are currently doing due to a gross receipts tax that they

have to pay and medicare/medicaid reimbursments are at a low.

So you see, I don't have many choices. The thought of relocating to

another state is just not an option as the health insurance issues would be

huge. Pre-existing condition etc....

It's my beliefe that if I need anything more then my Gastro can provide

he will see to it that I am sent out of state for treatment, this has

already been discussed through the insurance plan and approved if necessary.

Thanks for the concern, I wish I had as many options as many of you in the

group have but I don't. I work with what I have, the treatment thus far has

been successful. I thank GOD every day for being able to have health

insurance. I know I have said this before, those who need a liver in the

state of New Mexico and do not have insurance and can't afford to pay out ot

pocket will DIE. There are no indigent funds in place for them as there were

just a short year ago and I feel very very bad for them.

Thanks, Jen

On Mon, 12 Mar 2001 22:45:05 EST, wrote:

> Jen I think your doctor is mistaken. Rare as it is I don't see how you

could

> be the only one in the whole state. You very well may be the only one he

has

> treated and if this is the case find someone with experience. My

daughter

> was referred by her gastro because he is not a liver specialist. Please

> don't take offense, just want what's best for you. Take care and God

bless,

> Genny

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

[Guest guest]

Hi ,

Are you sure it wasn't Acutane perhaps? That stuff is real hard on the

liver and Dermatologists won't prescribe it without liver function testing

done or if your of child bearing age even if your on birth control.

My Gastro and Dermatoligst have both been consented to the use of

tetracycline for the treatment of acne and prefer it over erythromyacin with

regards to the liver as I have used both over the years for the treatment of

adult onset acne.

How much tetracycline did your friend take to go into liver failure and

how long?

I have heard through the grapevine that tetracycline may have some

origins in AIH but its all speculative at this point as nobody really knows

for sure what triggers this disease.

I thank you for your concern and input but I am not to alarmed at this

point as I saw my gastro on Thursday and inquired if I could up the dosage

of tetracycline as needed if the imuran starts to make me break out again.

He said it was ok and there was no concern with its effect on the liver but

to keep him updated.

Thanks, Jen

On Wed, 4 Jul 2001 20:11:39 EDT, wrote:

> Hi. My name is and I've had AIH for a year. I just wanted to let

you

> know some info my hep told me. I don't want to scare you but tetracycline

can

> be toxic to the liver. My doctor told me of an AIH patient of his who was

> prescribed teteracycline by a dermotologist and soon afterwards went into

> liver failure. I don't mean to suggest this happens to everyone but it

could

> be making you ill.

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

[Guest guest]

Hi Jen,

Thanks for writing. It really helps to hear what others know about

this. Yeah, I read that Im at a greater risk if I have it, and

that babies are usually born premature.

If I go all the way with it and die, what a better way to die, as

you give birth. But I know many things can happen. Like I said,

I'll just go with the flow. This is too strange.

Take care Jen, and thanks again.

Lydia

[Guest guest]

I have pictures ..

would you like to see them

Jen

> Jen,

> Alaska? How beautiful!

>

> Mic

>

>

> > yes!!? In fact, I just sent a care package out (I'm an artist so painted

> >some things too

> >I am living in Portland Oregon ~

> >moved from California but I grew up in Alaska

> >

> >jen

>

>

>

[Guest guest]

Sure! :)

> I have pictures ..

>would you like to see them

[Guest guest]

Jen,

I had the itching prior to transplant and since re-occurrence I have it every once in a while. I never found anything that helped. The first person I knew that had PBC told me to watch my copper intake. It helped some. I think there are suggestions at www.pbcers.org

Sorry.

Jo Lynne

[ ] Hey Everyone!!

Has anyone had itching from PBC, any suggestions? Thanks :)Jen

[Guest guest]

Hi Jen:

No offense, but Aleve just is not going to help that

much with RA - are you taking any other meds, or is

that truly it? You need to be on a DMARD to slow the

progression of the disease - you may think that the

Aleve is working because it decreases the pain, but

what is happening to your joints and your body, is

silently continuing under your skin. Relieving the

pain is just not enough - believe me, I also thought

that way for a while, but being in this group and

hearing others stories has really opened my eyes.

Have you given any consideration to taking anything

else - has your doctor suggested it?

Kathe in CA

--- saralaughs02 <saralaughs02@...> wrote:

> Hello, Jessy!

>

> I can relate to what you are saying. I, too, was

> very young when I

> started having symptoms of RA. I think it got

> really bad around 23-

> 24yo. I was Dx'd at age 27 and have just turned 30.

> Started out

> being able to tell when it was going to rain. I now

> have pain that

> runs from my knees to my ankles, so bad that it

> feels liek I am

> standing on broken bone at times. I haven't started

> taking anything

> other than Aleve so far.

>

> I know it's hard to be so young and to have such

> pain in your body.

> What anti-inflammatory are you on?

>

> Jen

>

>

> > > Hello,

> > >

> > > I haven't posted in a couple months, but am

> having a

> > > flare and was wondering if anyone had any

> suggestions.

> > > The rheumotiod arthritis is mainly in my feet,

> and

> > > then also effects my achilles tendons. They

> just kill

> > > me, esp in the evenings and nights. Does anyone

> else

> > > experience this? What would you suggest for

> pain

> > > relief? I am currently on Methotrexate (25 mg),

> > > Prednisone, a prescription anti-inflammatory,

> and

> > > anything else that helps.

> > >

> > > Also is there anything I could ask my rheumo

> doctor to

> > > look into as far as the achilles tendons? Last

> time,

> > > he told me to use some ceyenne cream, but that

> didn't

> > > really work.

> > >

> > > What do you do when you have flares in your

> feet, but

> > > want to go do stuff? I know at the end day, and

> the

> > > next day I will pay for it, but at the same time

> I am

> > > 26 and want to keep up.

> > >

> > > Thanks for the help,

> > > Jessy

> > >

> > >

> > >

> > >

> ____________________________________________________

>

> > > Sports

> > > Rekindle the Rivalries. Sign up for Fantasy

> Football

> > > http://football.fantasysports.

>

>

>

>

>

Kathe in CA

____________________________________________________

Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.

[Guest guest]

I might add that it was OTC Aleve that gave me a bleeding ulcer. Sue

On Wednesday, June 29, 2005, at 03:42 PM, Kathe Sabetzadeh wrote:

> Hi Jen:

>

> No offense, but Aleve just is not going to help that

> much with RA - are you taking any other meds, or is

> that truly it? You need to be on a DMARD to slow the

> progression of the disease - you may think that the

> Aleve is working because it decreases the pain, but

> what is happening to your joints and your body, is

> silently continuing under your skin. Relieving the

> pain is just not enough - believe me, I also thought

> that way for a while, but being in this group and

> hearing others stories has really opened my eyes.

> Have you given any consideration to taking anything

> else - has your doctor suggested it?

[Guest guest]

Hello! How are you? Well, I'm sorry about the DX and then again I

understand how not knowing can drive a person batty! I'm really glad

that the doc took you seriously enough to take some preventive

measures!!!!!! Sounds like a keeper. Anyhow, I want to congratulate

you on the weight loss. Way to go!!!!! I hope that they can really

get on the ball where you are concerned!!! Take care and keep us

posted! XXX's Kim

[Guest guest]

Hi Jen,

I have a friend that has an autoimmune disease and has had two children since

her diagnosis. You should talk to your doctor about it though. I had my

children before dx of my muscle disease. I was dx 7 years ago with that. I

have lost a lot of 'friends' too. My family, I have to admit has been very

helpful and supportive. The people close to me, I have printed out all the

information I can, and handed it to them to read. The least supportive at times

is my husband. It took me a long time to understand that this is really hard on

him too. He can't fix it and that bother's him so he tries to ignore it. He is

getting better since my recent dx of PBC.

On my blog, there is an analagy called 'spoons'. I printed it up for DH and

sent the link to all my friends with computers. They all said 'oh, now I get

it....'.

Good luck. I was dx with PM right after having my last child. If you ever need

to talk privately, let me know!

Zanna

My health blog:

www.zannasstory.blogspot.com

[Guest guest]

Hi

Sorry I missed the orignal post about pregnancy and AIH.

Just wanted to chime in and say that Kels's doctors all felt she

would still have children one day. It would be considered a high risk

pregnancy if she was still AIH positive and on meds, but not

impossible. One of Kels doctors, who is female, was treated for the

same disease as Kels by Kels same prime doctor, she is a mother of 2,

a doctor, and is head of community diseases/control at the hospital.

Trish

>

> Hi Jen,

> I have a friend that has an autoimmune disease and has had two

children since her diagnosis. You should talk to your doctor about

it though. I had my children before dx of my muscle disease. I was

dx 7 years ago with that. I have lost a lot of 'friends' too. My

family, I have to admit has been very helpful and supportive. The

people close to me, I have printed out all the information I can, and

handed it to them to read. The least supportive at times is my

husband. It took me a long time to understand that this is really

hard on him too. He can't fix it and that bother's him so he tries

to ignore it. He is getting better since my recent dx of PBC.

>

> On my blog, there is an analagy called 'spoons'. I printed it up

for DH and sent the link to all my friends with computers. They all

said 'oh, now I get it....'.

>

> Good luck. I was dx with PM right after having my last child. If

you ever need to talk privately, let me know!

>

> Zanna

>

>

> My health blog:

> www.zannasstory.blogspot.com

>

[Guest guest]

Well, I'm keeping my fingers crossed that one day I may be able to

conceive on my own. I have endometriosis that is mostly under

control with pain meds each monthy. I stopped taking the hormones

that my gyne prescribed because of toxicity dangers due to the liver

diseases. My older sister had a mild form of the disease and was

unable to conceive and in the back of my mind I fear the same

thing. My gyne said the endo hasn't caused any damage to my ovaries

so that outlook is good. Now it's my liver that I'm worried about

will cause the problem with wanting to conceive. The hubby and I

also discussed the possibly of adoption, but will cross that bridge

when we come to it. My liver doc advised me not to " try " and

conceive until my liver levels stabilize and the AIH goes into

remission.

Ladies, thanks for your replies, I really appreciate it. It's been a

hard few weeks for me and I am thankful for everyone's answers,

knowledge and thoughts.

Jen

> >

> > Hi Jen,

> > I have a friend that has an autoimmune disease and has had two

> children since her diagnosis. You should talk to your doctor

about

> it though. I had my children before dx of my muscle disease. I

was

> dx 7 years ago with that. I have lost a lot of 'friends' too. My

> family, I have to admit has been very helpful and supportive. The

> people close to me, I have printed out all the information I can,

and

> handed it to them to read. The least supportive at times is my

> husband. It took me a long time to understand that this is really

> hard on him too. He can't fix it and that bother's him so he

tries

> to ignore it. He is getting better since my recent dx of PBC.

> >

> > On my blog, there is an analagy called 'spoons'. I printed it

up

> for DH and sent the link to all my friends with computers. They

all

> said 'oh, now I get it....'.

> >

> > Good luck. I was dx with PM right after having my last child.

If

> you ever need to talk privately, let me know!

> >

> > Zanna

> >

> >

> > My health blog:

> > www.zannasstory.blogspot.com

> >

>

[Guest guest]

Well, Jen!

I have some more hope for you. My autoimmune wasn't dx until my son was born,

but we knew that I had had it since before that, at least a few years because I

was going to doctors and trying to figure out what was wrong with me. They told

me it was in my head. In the meantime, I had an ovary removed, had 2

laporoscopies to remove the endometriosis, had a fibroid tumor in my uterus and

also have a double horned uterus. That means that mine has a wall about half

way down that splits it into two seperate sides. My doctor said that I was

lucky to conceive as there was only a couple of places for the egg to implant

and survive. It if didn't implant in the right area, it would be squeezed out

and not survive. The double horned uterus is a genetic condition, that one is

born with. I have my two miracles. I also had part of my cervix removed due to

cancerous cells. Our son was conceived after all of that! He was a preemie but

due to the diligence of my OB, we had the pregnancy last as long as my boy would

stay in there! He was 3#s and born 10 weeks early. He was 18 " long at 3#'s.

He had such long limbs and fingers and toes, we called him spider monkey. He is

now 4'3 and 62 pounds and 7 years old. He does have high functioning autism but

other than that is a happy, healthy boy.

You should find an OB that specializes in high risk pregnancy and talk to them

about your fears. My doctor was wonderful. He even helped me get my first

diagnosis. He knew I wasn't crazy.

I have a site at www.polymyositis.info that tells about all of that. I am

closing that site down soon but it chronicles all of it, including my dx and

some treatments.

Take care,

If it is meant to be, it is meant to be. You can't make things better by

worrying about it. My old pastor used to say 'worry is like a rocking chair, it

gives you something to do but gets you no where'. I will say a prayer for you.

(((HUGS)))

Zanna

My health blog:

www.zannasstory.blogspot.com

[Guest guest]

Thanks and and all that have commented on this for me. I really

have been weighing all the pros/cons as a hearing, protective mom and wanted to

make sure i was seeing all sides of this argument.

My son isn't deaf but one of the schools that I am researching is called the AZ

School for the Deaf and Blind (ASDB). The campus here in AZ is like a normal

day school, and they have a campus in Tuscon that is more like a boarding school

but the kids go home on the weekends.

Great news!!! I just found out today that I don't have to choose between the

two schools after all. I can use both programs together. YAY!!! I really

wanted to utilize the AGBell recommended school (which is the " oral " school) to

get my son speaking and using his voice but I also don't want him to be totally

frustrated because he's not confident to use his voice and has no way to

communicate. I am beginning to think that ASL is becoming my crutch more than it

would be his. (does that make sense?) Anyway, now that I know I can have my

son attend both programs and both are free until he turns 3 yrs old the pressure

is off me to make sure i choose the " best " school. I'm so relieved.

Thank you so much for your insight on this. Feel free to share any other

thoughts with me that you may have. Being a member of this group for just a few

days has really opened my eyes to the real life possibilities and expectations.

You experience is invaluable to me!

Jen

Jen

Hi Jen,

Is your son blind as well as deaf? I noticed you mentioned a school

for deaf and blind.

The oral vs " total communication " argument is one you will have to

solve for yourself. Everyone has an opinion on it. My feeling is it

never hurts to know more than one language. However, SPOKEN English is

the primary language of this country, and written English tends to suffer

if a person is raised using primarily ASL. Many so called Total

communication schools do more signing than speaking. So you need to

check the options out very carefully. Sit in a classroom, and see if the

students speak or sign when they reply. See if the teacher speaks or

signs. Look at the school work that is handed in.

Many children who are implanted early in life (age 12 months or so)

and get speech therapy and perhaps AV (audio verbal) therapy, are

mainstreamed by the time they are ready for kindergarten. So while the

teacher might have to wear an FM system (that hooks right into the

implant), your son would be with speaking and hearing classmates.

You want him speaking as soon as possible, and a speech therapist can

help you encourage him to babble, and reward him for attempting speech.

Babbling is an important step to speaking. If you can't hear yourself,

you stop doing that. But a speech therapist is who you need to speak to

about this. See if your audiologist or implant center can recommend

someone for you to talk to.

Cost of this should be covered by the school board in your area.

One thing an orally raised child can do is lipreading. So even if

there is a delay with the HA to CI transition, your son will be able to

understand speech enough to get along. If he doesn't benefit from a HA,

then he should be implanted fairly soon anyway. Any time there is a

problem with the CI, your company can send out a replacement processor

(at least that is what Cochlear does) I can't speak for the other

companies. So there is an overnight delay in the process. New processor

is sent overnight, goes to the audiologist who will put the program on

the processor, you pick it up and take back the damaged one, and you're

in business. Many insurances cover 2 processor for just that reason, so

you are never out of communication.

Contact the AGBell organization in Arizona and see which school they

recommend. I'm sure many of the parent members have children in various

schools. They can give you first hand experience. AGBell gives a free

6 month membership to parents of deaf children!! Costs nothing to join,

lots of information.

The Original

Hi and all,

Yes, my son was screened at birth. He failed the OAE but " passed " the ABR

that they gave him when he was 2 days old.

I've contacted two schools already... AZ School for Deaf and Blind and

Desert Voices Oral Learning Center. I'm meeting with ASDB tomorrow and

with DVOLC on Friday to check out what each has to offer. My

understanding from what little I do know is that ASDB does a mix of Sign

and Oral where OVOLC is all oral. My fear is that if I go all oral that

my son won't have a way to communicate should there be a delay between

hearing aids and cochlear or if in the future the cochlear has a problem.

I have mixed feelings about it. Should i worry about having a " back up

communication system " or is going oral the best way to go?

Jen

[Guest guest]

Hi Jen,

That is great that you have so many options. I think that will let

you see which is a better fit for your family, though I am a little

worried you will get overwhelmed with two programs! I'd also

encourage you to meet with kids and families who have already

" graduated " from special programs and learn from them. Your implant

center and/or the schools could give you some contacts.

Lydia

[Guest guest]

Good point Lydia,

I will watch for signs of burnout on my son. Obviously I a little type A when

it comes to getting things done but that doesn't mean that he is. Thanks for

reminding me.

Jen

Re: Jen

Hi Jen,

That is great that you have so many options. I think that will let

you see which is a better fit for your family, though I am a little

worried you will get overwhelmed with two programs! I'd also

encourage you to meet with kids and families who have already

" graduated " from special programs and learn from them. Your implant

center and/or the schools could give you some contacts.

Lydia

[Guest guest]

I am not worried about burnout in your son -- I am worried about YOU! :-)

Lydia

>

> Good point Lydia,

> I will watch for signs of burnout on my son. Obviously I a little

type A when it comes to getting things done but that doesn't mean that

he is. Thanks for reminding me.

>

> Jen

>

>

>

>

> Re: Jen

>

> Hi Jen,

> That is great that you have so many options. I think that will let

> you see which is a better fit for your family, though I am a little

> worried you will get overwhelmed with two programs! I'd also

> encourage you to meet with kids and families who have already

> " graduated " from special programs and learn from them. Your implant

> center and/or the schools could give you some contacts.

>

> Lydia

>

>

>

>

>

>

>

[Guest guest]

How sweet of you Lydia...

In addition to everything else that I read on the CI boards i'm also reading

lessons from and pamphlets that our Early Intervention counselor

dropped off to me yesterday. Me burn out??? I guess i better take a look in

the mirror some time during each day to make sure i'm not on " fire "

Hehehehe!

Jen

Re: Jen

>

> Hi Jen,

> That is great that you have so many options. I think that will let

> you see which is a better fit for your family, though I am a little

> worried you will get overwhelmed with two programs! I'd also

> encourage you to meet with kids and families who have already

> " graduated " from special programs and learn from them. Your implant

> center and/or the schools could give you some contacts.

>

> Lydia

>

>

>

>

>

>

>

[Guest guest]

I was unaware of any law but BCBS did indeed send me a letter stating they would

no longer insure me and sent some information of other companies that would

cover me for catistrophic conditions. This whole thing has been a nightmare but

I suppose it could be worse. Thanks Dyana

jen <jennybonner13@...> wrote: I thought that they had passed a law

that said you could not be refused

insurance due to a preexisting condition? I know I always worry that my son

whose healthcare has cost millions of dollars would somehow change…My

husband can never change jobs because of what the insurance does offer for

us. In his first year of life he cost more than 2 million dollars. Many

insurances have caps, we are so very blessed that this is not the case. I

have no idea what we would have done without it..

Has the chiro helped you?

JP

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