kathleen

October 12, 2001

Kathleen said -

>Now if only I could be more like you.

Aahhh but then you wouldnt be you then Kathleen....

:-P

SUE

Wales,UK

February 17, 2002

Yeah, love the new signature!

:-D

Suzanne

dd Ruby 2.8yrs

South Wales

October 21, 2004

My brain is totally gone, I meant Kathleen...Brain dead kathy b..kathy brunow <kathy-boo@...> wrote:

Hey deb, try these links too....www.hopkins-hepc.org & -id.edu... Is the Jewish Hospital that your referring too by chance Beth Israel Deaconess??? Kathy b..Kathy Brunow

October 21, 2004

My brain is totally gone, I meant Kathleen...Brain dead kathy b..kathy brunow <kathy-boo@...> wrote:

Hey deb, try these links too....www.hopkins-hepc.org & -id.edu... Is the Jewish Hospital that your referring too by chance Beth Israel Deaconess??? Kathy b..Kathy Brunow

May 3, 2006

hi Bevs email addy is..

BBarham@...

hope this helps

!

Kathleen

I honestly believe if is still fevering this intensely at his

age he NEEDs to join this study to see IF he has another Periodic

Fever Syndrome.

Dr. Kastner is WONDERFUL.

Since is over 18 he will need to contact Beverly... She is the

research nurse for adults with Periodic Fevers.

I KNOW they will be interested in him!

It is worth the trip up there.

Make sure he tells them that he was a participant in the original

study. I am sure that will interest them too.... Below I am giving

you Bev's telephone number. I have her email address at home, but I

am babysitting right now. I will forward that to you.

I also am sending you Kastner's info... have give that info to

his doctor. ALSO have g get copies (only pertinent lab tests)

from his physician... and see if he can get a letter dicated by the

specialist who follows him... indicating his diagnosis of ...

Beverly is wonderful.

SHe use to be the RN for all of us but the studies have gotten so

big now they had to split pediatrics and adults.

Let us know how this goes. It can be as fast as 2 months to be seen

and as long as 8 months... BUT it is worth it.

Beverly Barham, RN, BSN

ADULT Periodic Fever Research RN

Nurse Specialist, Research

Building 10, 9S209

10 Center Drive, MSC 1828

Bethesda, land 20892-1828

301-594-2494 or 888-996-4267, ext 1

Fax 301-480-0676

Kastner, M.D., Ph.D.

Chief, Genetics and Genomics Branch

Genetics and Genomics Branch

Phone: 301- 496-8364

Fax: 301-402-0012

Building 10, 9N214

E-mail: kastnerd@...

God Bless

Fran

PS... PLEASE follow the link in the email I sent to you last

night.... which will allow you to create a profile and name so

you can access the site... The files I have created and the links

are so well worth it....

May 3, 2006

Thank you. I will let you know how we proceed. I have to talk to about

all of this.

Kathleen

--------- Kathleen

>

> I honestly believe if is still fevering this intensely at his

> age he NEEDs to join this study to see IF he has another Periodic

> Fever Syndrome.

>

> Dr. Kastner is WONDERFUL.

>

> Since is over 18 he will need to contact Beverly... She is the

> research nurse for adults with Periodic Fevers.

> I KNOW they will be interested in him!

>

> It is worth the trip up there.

>

> Make sure he tells them that he was a participant in the original

> study. I am sure that will interest them too.... Below I am giving

> you Bev's telephone number. I have her email address at home, but I

> am babysitting right now. I will forward that to you.

>

> I also am sending you Kastner's info... have give that info to

> his doctor. ALSO have g get copies (only pertinent lab tests)

> from his physician... and see if he can get a letter dicated by the

> specialist who follows him... indicating his diagnosis of ...

>

> Beverly is wonderful.

> SHe use to be the RN for all of us but the studies have gotten so

> big now they had to split pediatrics and adults.

> Let us know how this goes. It can be as fast as 2 months to be seen

> and as long as 8 months... BUT it is worth it.

>

> Beverly Barham, RN, BSN

> ADULT Periodic Fever Research RN

> Nurse Specialist, Research

> Building 10, 9S209

> 10 Center Drive, MSC 1828

> Bethesda, land 20892-1828

> 301-594-2494 or 888-996-4267, ext 1

> Fax 301-480-0676

>

> Kastner, M.D., Ph.D.

> Chief, Genetics and Genomics Branch

> Genetics and Genomics Branch

> Phone: 301- 496-8364

> Fax: 301-402-0012

> Building 10, 9N214

> E-mail: kastnerd@...

>

> God Bless

> Fran

>

> PS... PLEASE follow the link in the email I sent to you last

> night.... which will allow you to create a profile and name so

> you can access the site... The files I have created and the links

> are so well worth it....

>

May 4, 2006

Kathleen, welcome to our group! 23 years! My son has dealt with his disease for

all of his 13 years, I know that he will still be dealing with it at 23 but I

sure hate to think of it!

I definitely agree with Fran that he needs to be seen at NIH and go through

the genetic testing. His symptoms sound so much like my son PJ's. In one mail

you mentioned an episode that started out as and he wound up being

diagnosed with myocarditis. In FMF, what my son has, the inflammation is mainly

in the lining in the heart, lungs, stomach and in his joints. The resulting pain

is unbelievable. The look on a childs face experiencing that pain is one that

would break your heart.

You also mentioned that stress can bring on your sons flares. NIH told me

that physical over exertion and mental stress are the 2 biggest triggers of the

FMF episodes.

I am not by any means saying that your son has FMF but he sure doesn't sound

like to me! Please, convince him to go to NIH! All of the different

genetic disorders have different treatments that work best for each specific one

and FMF left untreated can be fatal. Even if you think that you don't match the

typical genetic family for one specific disease, you just never know. My husband

and I are still trying to find the mediterranean connection in our family, still

haven't found it!

Pat, mom to PJ, 13yo, FMF, Virginia

---------------------------------

New Messenger with Voice. Call regular phones from your PC and save big.

July 31, 2006

Ann,

Thank you for your kind note. I liked reading about your dinner

out. We went out as a family one time a month ago and I had a

horrible time trying to keep anything down. I had to keep running

to the bathroom. I hope someday to be able to go out like you.

Worring about how to eat is just starting to take over my life.

I've been in a bit of denial and just not eating at all some days.

Taking care of three young children (ages 3, 6, and 9) makes me so

busy that it's a remarkably easy to do. Some days all I've eaten is

a little yogurt and maybe a fruit smoothie if I've made some as a

snack for the kdis. But at night after the kids are in bed I'm so

hungry, but I don't dare eat then because I know I'll reget it.

And all this not eating has really hit me hard today. I have no

energy, I am exhausted and all I've done is a load of laundry. My

kids are begging to go to the park. It's a beautiful day, but I

just don't think I can physically do it. My house is a mess. This

is not smart! I've got to take some time and really figure out what

I can and cannot eat. I'm definately looking through those good

food/bad food lists in the databse.

>

> Dear Kathleen,

> Welcome to the Group. If you are just a 'little' scared, then,

believe me, you are coping much better than a lot of us. Many of us

think at first that we are going to die a slow and painful and food-

free death with this and also feel so very alone. Neither of these

dire circumstances is the truth.

>

> The truth is that the people here support you through

everything, and some of them have an awesome grasp of the knowledge

of this disorder.

>

> I was 40 also, when I started with this. The difference between

us is that I am now 56 and have just done something I should have

done 15 years ago. You must learn from my experience and get it

sorted. You do not have to live this half-life. Not being able to

eat takes over your whole existence - getting the calories, missing

out on loads of great social occasions and getting the nutrients

through to your blood stream that you need to cope with everyday

life.

>

> Apparently dilatations are most effective in the over 40s, but

as you say, there is the problem with acid reflux, which is damaging

to your oesophagus. You need to be taking acid suppressants to

prevent this.

>

> All the best and get into action.

> Love from Ann in England xx

>

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

> To help you stay safe and secure online, we've developed the all

new Security Centre.

>

July 31, 2006

My heart really goes out to you. I so remember the days you describe. While I

am a bit

older, kids are grown, I travel a great deal and 'perform' in the classroom,

which takes

considerable energy. When I was not getting enough nutrition (mostly I got

enough

calories, just not healthy ones) I got wearier and wearier and felt more and

more

depressed. Everywhere I traveled, I had to figure out a way to " eat " in

private, with hope of

getting a bit down and the privacy to chuck it up if I couldn't.

Take heart, a year ago, this was my life. Now I eat as I wish, with the help of

tons of water

and enjoy food and good times. I can remember the absolute vibrancy of getting

nutritious food again. You will get there too. Take heart, and take care of

yourself and

allow yourself a really good cry!

Hugs

Peggy

> >

> > Dear Kathleen,

> > Welcome to the Group. If you are just a 'little' scared, then,

> believe me, you are coping much better than a lot of us. Many of us

> think at first that we are going to die a slow and painful and food-

> free death with this and also feel so very alone. Neither of these

> dire circumstances is the truth.

> >

> > The truth is that the people here support you through

> everything, and some of them have an awesome grasp of the knowledge

> of this disorder.

> >

> > I was 40 also, when I started with this. The difference between

> us is that I am now 56 and have just done something I should have

> done 15 years ago. You must learn from my experience and get it

> sorted. You do not have to live this half-life. Not being able to

> eat takes over your whole existence - getting the calories, missing

> out on loads of great social occasions and getting the nutrients

> through to your blood stream that you need to cope with everyday

> life.

> >

> > Apparently dilatations are most effective in the over 40s, but

> as you say, there is the problem with acid reflux, which is damaging

> to your oesophagus. You need to be taking acid suppressants to

> prevent this.

> >

> > All the best and get into action.

> > Love from Ann in England xx

> >

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

> > To help you stay safe and secure online, we've developed the all

> new Security Centre.

> >

>

August 15, 2006

Thanks for the encouragement Ann. You've always been so supportive

and I really appreciate that. I'm starting to warm up to the idea

of surgery. But like I told Debbie -- it's so strange to have

something I took for granted for 40 years to suddenly quit working

correctly. Part of me kept thinking maybe it will suddenly get

better too. But I as I sit here and can still feel the piece of

chicken I attempted to eat for lunch in my throat I know it's just

wishful thinking. You're right I do deserve to eat without

trouble. Thanks for the kick in the butt.

-Kathleen

>

> Dear Kathleen,

> I think that most of us here can relate to your feelings when

you said:

>

> If surgery was going to be a permanent solution, I don't think

I'd hesitate as much. But so many people have talked about having

to have a second surgery or balloon dilations after surgery. And

I'm amazed at the advances in surgery recently made -- from open to

lap, the best way to do a fundoplication (if I should have one done

at the same time). So I wonder if I postpone the surgery a bit

(based on the severity of my 'A') then maybe more advances will be

made.

>

> If you are hoping that we will say that you are right, then you

might be disappointed. There are some of us in this Group who have

bitter regrets about putting things off.

>

> If you are struggling to eat, you need help. Everyone deserves

to be able to eat. Surely that is not too much to ask? I think

that one of the few down sides of reading the posts on this site is

that it may give an unbalanced view overall. I think we have an

agreement of consensus that many of those who have gone on to have

no more real problems disappear and the majority of those left are

ones that continue to need medical and emotional support. There

are plenty of us who are doing well and carry on because they wish

to give something back but are in the minority I would say.

>

> What I am trying to say is please do not give yourself excuses

to neglect your well-being. You have a (probably) permanent

disorder/disease called achalasia. So deal with it. You are much

more than the disease, but until you get it sorted it will take over

your life and spoil every day for you.

>

> We are here to help you and know exactly how it is. We have

been through it and come out of the other end, as they say.

>

> Love and support from Ann in England XX

>

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

> The all-new goes wherever you go - free your email

address from your Internet provider.

>

August 15, 2006

>

> Thanks for the encouragement Ann. You've always been so supportive

> and I really appreciate that. I'm starting to warm up to the idea

> of surgery. > -Kathleen

>

Kathleen,

I have an open Heller about 30 years ago and just started having

problems about 5 years ago. I don't think 25 years is too bad!!! Good

luck.

PokieOK

October 5, 2006

Thanks Caroline! I've already had three dialations since April.

They've only been to 20mm, but they've lasted only weeks. My doctors

(GI and Family Practice) think surgery is the best option for me.

I know I have an appeals process for my current insurance and I'm

starting now to figure out what I need to do. Just wish things were

easier. As you said, the insurance company is not making money

looking out for my health. I guess I just need to convince them that

the lap surgery would be best for them (as well as me).

November 29, 2007

Hi, not yet.. just had Igg drawn twice so far.. and some metabolic

labs..

She has suffered since a little one.. with these. but they are worse

with stress.. and are now causing some secondary infections.. ie

bacterial... when she gets them..

I thought that might be the case.. of autoimmune.. my PID child also

has them chronic.. but immno he has. just chalked it up to CVID...

Should pedi check all of the suggestions...

ie titres.. levels ... etc..

Thanks so much.. it is hard to deal when you are a teen with this..

she has been getting mirgrains.. and I am floored to have another

symtomatic child.. like most of you on the board do..

Thanks for everones help and support..

Gladly appreciated.. and desparetly needed.

Kathleen..

>

> Hi, Does anyone have any info on High IGg in a non PID child...??

>

> She is plagued with chronic mouth sores.. and have no idea why they

are

> so high.. any help would be greatly appreciated..

>

> Hi Kathleen--

> Both high IGg and mouth sores are symptoms of autoimmune

disease. Many parents of PIDers have autoimmune disease--I have

Lupus. Has she been tested?

> Sandi, Mom to , age 14--CVID

>

November 29, 2007

My 17 year old is similar. My kids are both adopted and not related but she has

immune issues but her titres are normal. I would like to have her tested again.

Both of the kids had horrendous sinus infections from Mold. Lucas was a newborn

and was 5. They were both very sick for several years. But the

mouthsores and miagraines have been the worst. She is finally getting better

after she had her 5th sinus surgery. They found some huge cysts in her Frontal

sinuses, we were told it is very rare. Isn't everything they get.?

BARBIE

Re: Kathleen

Hi, not yet.. just had Igg drawn twice so far.. and some metabolic

labs..

She has suffered since a little one.. with these. but they are worse

with stress.. and are now causing some secondary infections.. ie

bacterial... when she gets them..

I thought that might be the case.. of autoimmune.. my PID child also

has them chronic.. but immno he has. just chalked it up to CVID...

Should pedi check all of the suggestions. ..

ie titres.. levels ... etc..

Thanks so much.. it is hard to deal when you are a teen with this..

she has been getting mirgrains.. and I am floored to have another

symtomatic child.. like most of you on the board do..

Thanks for everones help and support..

Gladly appreciated. . and desparetly needed.

Kathleen..

>

> Hi, Does anyone have any info on High IGg in a non PID child...??

>

> She is plagued with chronic mouth sores.. and have no idea why they

are

> so high.. any help would be greatly appreciated. .

>

> Hi Kathleen--

> Both high IGg and mouth sores are symptoms of autoimmune

disease. Many parents of PIDers have autoimmune disease--I have

Lupus. Has she been tested?

> Sandi, Mom to , age 14--CVID

>

November 29, 2007

How many of our kids have migraines? has selective IgG Def and was just put

on Topamax and Zomig because his migraines are so bad, lasting several days. He

gets dizzy, stutters, and slurs his speach when he has them. Anyone else? Any

suggestions?

@...: mother5590@...: Thu, 29 Nov 2007

19:23:03 -0800Subject: Re: Re: Kathleen

My 17 year old is similar. My kids are both adopted and not related but she has

immune issues but her titres are normal. I would like to have her tested again.

Both of the kids had horrendous sinus infections from Mold. Lucas was a newborn

and was 5. They were both very sick for several years. But the

mouthsores and miagraines have been the worst. She is finally getting better

after she had her 5th sinus surgery. They found some huge cysts in her Frontal

sinuses, we were told it is very rare. Isn't everything they get.?BARBIE -----

Original Message ----From: Kathleen <kkcrt06@...>To:

@...: Thursday, November 29, 2007 8:53:02 PMSubject:

Re: KathleenHi, not yet.. just had Igg drawn twice so far.. and some

metabolic labs..She has suffered since a little one.. with these. but they are

worse with stress.. and are now causing some secondary infections.. ie

bacterial... when she gets them..I thought that might be the case.. of

autoimmune.. my PID child also has them chronic.. but immno he has. just chalked

it up to CVID...Should pedi check all of the suggestions. .. ie titres.. levels

.... etc.. Thanks so much.. it is hard to deal when you are a teen with this..

she has been getting mirgrains.. and I am floored to have another symtomatic

child.. like most of you on the board do..Thanks for everones help and

support..Gladly appreciated. . and desparetly needed.Kathleen..>> Hi, Does anyone have any info

on High IGg in a non PID child...??> > She is plagued with chronic mouth sores..

and have no idea why they are > so high.. any help would be greatly appreciated.

..> > Hi Kathleen--> Both high IGg and mouth sores are symptoms of autoimmune

disease. Many parents of PIDers have autoimmune disease--I have Lupus. Has she

been tested?> Sandi, Mom to , age 14--CVID> > [Non-text portions of this

message have been

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August 27, 2008

Kathleen-

Hi- I live in Corona. That would be funny if you lived close by, where in

Riverside County to you live. My Rheumy is Dr. in OC.

I know I live about that far from LA too. I was diagnosed at UCLA. And there is

a wonderful Rheumy there, her name is Dr. Grossman.

How long have you been on Kineret? I heard alot of good things about it. My

Rheumy was throwin' that idea around at my last appt. My hubby wasn't very happy

because I am finally doing well and NOW he wants to mess with my meds. You know

he never wanted to before when I was barely holdin' on. He would tell me just

stay on what your on. He would't increase my prednisone. He wants me off

Prednisone no matter how I feel. Well I couldn't even function and it hurt to

breath. And breathing is kinda important. I would like to be able to breath

without it hurting. I like to breath. (LOL)

Anyway- I hope that Kineret works well for you.

Take care of yourself.

Love and Support,

Keri in CA

Keri

Keri,

I think you said you can't see Wallace at Cedars in LA becuase

he is out of your plan, but do you think your doc would consult with

him?

____________ _________ _________ _________ _________ _________ _

You rock. That's why Blockbuster' s offering you one month of Blockbuster Total

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August 27, 2008

Kathleen-

Hi- I live in Corona. That would be funny if you lived close by, where in

Riverside County to you live. My Rheumy is Dr. in OC.

I know I live about that far from LA too. I was diagnosed at UCLA. And there is

a wonderful Rheumy there, her name is Dr. Grossman.

How long have you been on Kineret? I heard alot of good things about it. My

Rheumy was throwin' that idea around at my last appt. My hubby wasn't very happy

because I am finally doing well and NOW he wants to mess with my meds. You know

he never wanted to before when I was barely holdin' on. He would tell me just

stay on what your on. He would't increase my prednisone. He wants me off

Prednisone no matter how I feel. Well I couldn't even function and it hurt to

breath. And breathing is kinda important. I would like to be able to breath

without it hurting. I like to breath. (LOL)

Anyway- I hope that Kineret works well for you.

Take care of yourself.

Love and Support,

Keri in CA

Keri

Keri,

I think you said you can't see Wallace at Cedars in LA becuase

he is out of your plan, but do you think your doc would consult with

him?

____________ _________ _________ _________ _________ _________ _

You rock. That's why Blockbuster' s offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals. yahoo.com/ tc/blockbuster/ text5.com

August 27, 2008

Kathleen-

Hi- I live in Corona. That would be funny if you lived close by, where in

Riverside County to you live. My Rheumy is Dr. in OC.

I know I live about that far from LA too. I was diagnosed at UCLA. And there is

a wonderful Rheumy there, her name is Dr. Grossman.

How long have you been on Kineret? I heard alot of good things about it. My

Rheumy was throwin' that idea around at my last appt. My hubby wasn't very happy

because I am finally doing well and NOW he wants to mess with my meds. You know

he never wanted to before when I was barely holdin' on. He would tell me just

stay on what your on. He would't increase my prednisone. He wants me off

Prednisone no matter how I feel. Well I couldn't even function and it hurt to

breath. And breathing is kinda important. I would like to be able to breath

without it hurting. I like to breath. (LOL)

Anyway- I hope that Kineret works well for you.

Take care of yourself.

Love and Support,

Keri in CA

Keri

Keri,

I think you said you can't see Wallace at Cedars in LA becuase

he is out of your plan, but do you think your doc would consult with

him?

____________ _________ _________ _________ _________ _________ _

You rock. That's why Blockbuster' s offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals. yahoo.com/ tc/blockbuster/ text5.com

August 27, 2008

Kathleen-

Hi- I live in Corona. That would be funny if you lived close by, where in

Riverside County to you live. My Rheumy is Dr. in OC.

I know I live about that far from LA too. I was diagnosed at UCLA. And there is

a wonderful Rheumy there, her name is Dr. Grossman.

How long have you been on Kineret? I heard alot of good things about it. My

Rheumy was throwin' that idea around at my last appt. My hubby wasn't very happy

because I am finally doing well and NOW he wants to mess with my meds. You know

he never wanted to before when I was barely holdin' on. He would tell me just

stay on what your on. He would't increase my prednisone. He wants me off

Prednisone no matter how I feel. Well I couldn't even function and it hurt to

breath. And breathing is kinda important. I would like to be able to breath

without it hurting. I like to breath. (LOL)

Anyway- I hope that Kineret works well for you.

Take care of yourself.

Love and Support,

Keri in CA

Keri

Keri,

I think you said you can't see Wallace at Cedars in LA becuase

he is out of your plan, but do you think your doc would consult with

him?

____________ _________ _________ _________ _________ _________ _

You rock. That's why Blockbuster' s offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals. yahoo.com/ tc/blockbuster/ text5.com

September 1, 2008

Hi Keri,

I live in Calimesa. (It's next to Yucaipa,next to Redlands). I used to live in

Yorba ; I still go there a lot to see my Mom. You should get off of the

prednisone. It is really bad for your bones. I just got a cast off of my arm. I

fell in May and broke my wrist because my bones are so brittle from prednisone.

(I'm only 45) Besides that I hate prednisone because it made me gain 100 lbs

over 2 years. I went from a size 6 to a size 22. I will say though it was the

only drug that really helped me to improve out of all the ones that I have been

on.

I just started the Kineret 2 weeks ago. Dr. Wallace said that it will be at

least 30 days until I can tell a difference.

I was telling about this juice that one of my friends that I used to

work with at the police department introduced me to. It has helped me as far as

my energy level. I don't feel like I can turn cartwheels yet but I can at least

get out of bed and function around the house and get a few things done now. So

predisone and this juice are the only things so far that have made me feel any

better so far. We'll see how the Kineret goes. I'm keeping my fingers and toes

crossed for a full remission. I haven't had any problems with the Kineret other

than it made me feel kind of sick (flu-ish) the first week. The injections are

not that bad or at least as bad as I thought they would be.

If you ever want to chat or get together give me a call I will copy you at your

regular email with my number.

Take care,

Kathleen

From: Kerilyn Read <kcbread3yahoo (DOT) com>

Subject: Re:

To: Stillsdisease@ yahoogroups. com

Date: Tuesday, April 1, 2008, 3:31 PM

Hi -

I actually live about 2 hours from LA. I was originally diagnosed at UCLA. And

at first all my doctors were consulting each other but now that my disease is

under control they don't. But I will have to look him up. Thanks for the info.

Grossman at UCLA had, a want to say, like 10 Stills patient over the

10+ years that she was at UCLA. I really liked her. I wish I lived closer.

Right now the Rheumy that I am seeing is in OC, and that takes me about 45

minutes to get there. And that is a pain -especially when I am not feeling well.

But maybe I can get my Doc to consult with another Rheumy that knows more about

Stills. The only problem I see is that my current Rheumy has control issues and

I can't see him admitting that my treatment is going well. The whole thing is a

pain.

Love and Support,

Keri in CA

Keri

Keri,

I think you said you can't see Wallace at Cedars in LA becuase

he is out of your plan, but do you think your doc would consult with

him?

____________ _________ _________ _________ _________ _________ _

You rock. That's why Blockbuster' s offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals. yahoo.com/ tc/blockbuster/ text5.com

September 1, 2008