Hello

[Guest guest]

I don't have breast cancer, I have a cancer on the outside of my lungs. I would

love to help with the quilt, I don't quite understand what you mean by a

description of myself.

Lana

[ ] hello

Hello everyone - my name is Vikki.

I am really here to ask for your help - I know it is a bit of a cheek on my

first posting but I genuinely need some help.

I am responsible for the organisation and production of a charity quilt

being made by the group that I belong to - the quilt is to be raffled off to

raise money for Breakthrough Breast Cancer, a charity here in the UK committed

to research into breast cancer. I would like to ask for your help to create the

backing of the quilt - we are asking for anyone who has been touched by breast

cancer, either personally, a family member or a friend to help us by sending a

signature square which we will sew together along with others to create the

backing.

A signature square is simply a square of material with your details on

which is then used to add extra interest and focus to the quilt - if you can

help us please send your name, town and state/county on a 2 1/2 inch square of

cream cotton to HCAT Quilters, C/O V Streeter, 7 Kingsdale Close, St Leonards,

East Sussex, TN37 7UD, England.

I hope that some of you will be able to help - I apologise to anyone now if

I have offended you by asking for your help on my first visit.

Thank you in advance for your help - stay safe and well.

Vikki.

[Guest guest]

Hi and welcome.

Your body has been overwhelmed by the growth of yeast cells because your immune

system was not strong enough to fight them off. Get and read Ann Louise

Gittleman's book Your Body Knows Best. This is one of the best books I have

ever read on the subject of Candidiasis.

Russ

[Guest guest]

Hi ,

I haven't been on for a while but as soon as I get caught up and have a

chance, I will do two things. Check out your web site ... and fix the

link to your site from mine I can't wait. I'm looking forward to

visiting! Thanks for letting us all know.

Take care,

Georgina

> jraworld wrote:

>

> Hello Everyone

>

> I just want to let you all know that I am done with the changes on the

> my website. I have made alot of changes to it. That also means that

> the address has changed to a new place. You can now see my website at

> http://www.geocities.com/jraworld The name of the website as also

> changed from 's Jra World to JRA World. I hope you all enjoy

> what changes I have made. I would also like your comments on it.

> Thanks

[Guest guest]

Forward from a new member of the list -- RAH

--- ken lavalley <kenlav@...> wrote:

From: " ken lavalley " <kenlav@...>

Subject: Hello

Date: Tue, 15 Feb 2000 11:27:13 -0600

My name is Allayne LaValley and this is the first

time that I have found anything about SA. I was

diagnosed Last April and have been fighting this for

the first time. I thought I was just having back

trouble. My life has been pretty miserable for the

last year. I didn't know that there was anyone else

out there that understood how I feel. I was a

branch manager of a local bank and was very

ambitious. We were experiencing some cut-backs and

I just thought I felt so bad because I was working

more than usual. I got to the point where I

couldn't turn over in bed without my husbands help.

I had to have help getting out of bed and the pain

was so severe that I had to stand in one place for

about 15 to 20 minutes to let the pain subside.

Through all of this I was working full time and

still trying to do everything at home. I was lucky

in finally finding a rheumatologist who diagnosed my

illness. I have had to limit my work to part-time

now and am currently battling an insurance company

for partial disability. It is so nice to know that

there are others who know how frustrating this is.

Thanks for listening.

__________________________________________________

[Guest guest]

Yes I have had the same feeling for years. I have a symptoms question

list which I will be sending out to folks in a few days. I am involved

in a university study on chronic illness and I keep coming up with good

questions and such for them. They think I am smart, I am not,

everything that I ask comes from questions people like you and others

have sent.

On Wed, 16 Feb 2000 22:47:27 -0800 " kklaughlin "

<kklaughlin@...> writes:

> From: " kklaughlin " <kklaughlin@...>

>

> Hi. I just joined the list. My name is Kent, and I was diagnosed

> hypo about three years ago, while the doctor was looking into my

> fatigue problem. Turned out I had sleep apnea, which is being

> treated now. But I think I probably always had a low thyroid, and

> never knew it. And actually, it's not real low. I take 88 mcg of

> Levoxyl daily. My question is I have this unexplainable feeling in

> my neck. It's hard to describe. And I've had it off and on as long

> as I can remember. It's just a very strange sensation in my neck

> that makes me want to pull my collar up, or the blankets when I'm in

> bed up under my chin. Which doesn't really seem to help, but it

> feels like it will. And I've had this nagging suspicion that it has

> something to do with my thyroid, but my family Doctor and my

> endocrinologist just say, " It's probably nothing. Just take some

> Advil if it bothers you " But it doesn't hurt, it just feels very

> uncomfortable. I talked with a woman who had an unstable thyroid and

> had it removed years ago. Actually she said it was " killed " with a

> radioactive pill? Anyway, she said before it was fixed, she had a

> very uncomfortable and anxious feeling in her neck. Her symptoms

> sounded a lot like mine. Does this sound familiar to anyone out

> there? Or is it just " nothing " like my Doctors said? Any help would

> be appreciated.

>

> Kent

>

>

[Guest guest]

Hi Becky,

Nice to meet you What sort of JRA does your daughter have? My son has

the systemic type. He'll be eleven soon and has had it since he was six

years old. There have been lots of ups and downs. You're right ... this

is a very puzzling illness. I too hope that one day soon they'll

understand it well enough to find a cure.

Take care,

Georgina

BanJsmom@... wrote:

> well i was just playing around on the computer and find this site so it is the

first time i ever found anything like this and iam always trying to find out

information on jra my daugher has it got it when she was10 years old she is a

teenager now and we have had are good days and are bad days it is a very

puzzleing disease! i pray that there will be a cure soon.it is so sad to see

your child in pain-swelled-achy-stiff-sore-iam sure that we all have days when

we are mad-sad-blame ourselfs for jra and wonder why then the next day is a good

day and you wonder why can`t all days be good and this disease go away and never

come back !well thank u for letting me share my feeling about this darn jra ill

pray for all --becky

[Guest guest]

hello everyone, and welcome to the new people in the group!!!!a little

update on me my son is 9 has systemic jra diagnosed 3 years ago, he has been

on prednisone almost the whole time except for one remission that lasted A

YEAR.. He has been on 10 mg prednisone and 12.5 mtx, however we stopped

giving him the mtx 3 weeks ago due to severe nauseau with it, We go to the

Dr. Monday. I know he wants to talk with us about the enbrel, he gave us a

video to watch about it.. has been feeling good. He was hospitalized Feb

16 with adrenal dysfunction, they gave him a steroid iv and that gave him a

real boost. That seems to carry him over for months.. Its almost like he is

on a high after that iv steroid for 5 to 6 months..then it seems to wear

off.. We still haven't decided about the enbrel.. just can't seem to decide

what to do.. I know if it were for me I would try it.. but I am afraid of the

unknown side effects for my son..Ill llet you know what we decide on Monday..

More later.. Jane

[Guest guest]

Hi Jane,

So good to see a message from you! I heard that folks in your area may

be getting a big snow storm soon. Have you heard about that? If it does

happen, I hope it's not too bad. My cousin in NY said it even snowed on

St 's Day.

Well, I didn't mean to write just about the weather I also wanted you

to know that your family will be in our thoughts as you decide about

what course to take next. Let us know how the appt goes on Monday, okay?

Tell that Josh and Kayla say hi!

Aloha,

Georgina

Jitz45@... wrote:

> hello everyone, and welcome to the new people in the group!!!!a little

> update on me my son is 9 has systemic jra diagnosed 3 years ago, he has been

> on prednisone almost the whole time except for one remission that lasted A

> YEAR.. He has been on 10 mg prednisone and 12.5 mtx, however we stopped

> giving him the mtx 3 weeks ago due to severe nauseau with it, We go to the

> Dr. Monday. I know he wants to talk with us about the enbrel, he gave us a

> video to watch about it.. has been feeling good. He was hospitalized Feb

> 16 with adrenal dysfunction, they gave him a steroid iv and that gave him a

> real boost. That seems to carry him over for months.. Its almost like he is

> on a high after that iv steroid for 5 to 6 months..then it seems to wear

> off.. We still haven't decided about the enbrel.. just can't seem to decide

> what to do.. I know if it were for me I would try it.. but I am afraid of the

> unknown side effects for my son..Ill llet you know what we decide on Monday..

> More later.. Jane

[Guest guest]

REALLY GLAD TO HAVE YOU BACK!!!!!! YOU WERE MISSED!!!!!!!

[Guest guest]

Hello Elinor,

Welcome to our little group. You are not alone now...and you can learn alot from

these people. We are all eager to share our experiences with others so that it

might help them cope withe PS and PA

Keep in touche,

Donna conklin

[Guest guest]

Hi

i have a 13 year old daughter with JRA and some more added to that

use to take the Tolectin but she had a reaction to it

so now Voltaren is so far doing ok

darlin i know how it is to have a daughter hurting at this age

does your daughter have braces?

this has helped melissa also she wears a brace on each knee

and a brace on each wrist

also hot baths help the doctor said keeping the joints moveing

helps alot but like today melissa helped me in the garage

and now shes sore her back knees wrist and hands

but i gave her the voltaren and shes sleeping at this time

where do you live?

Robbin

[Guest guest]

We live in New Jersey. I take her to A.I.Dupont in Delaware for treatment.

The doctor there is trying the non-steroid approach now. She is still able

to get around fairly well at this point. The pain and swelling has been

getting worse now that she is prednisone free. She has been on prednisone

off and on since 1995. The arthritis is really showing itsself now that she

is off it. Her big problem is a rare condition. She has been taking a drug

used to treat breast cancer called Tamoxifen to try to dissolve the scar

tissue on her major organs. It seems to be working, so now that she is off

the prednisone therapy for that the arthritis is getting worse a a fast pace.

She is only 4'9 " tall and shows no signs of puberty. Thank you very much for

your help.

Sincerely,

Bertha

[Guest guest]

Zima,

My dd has polyarticular JRA and all those joint you have mention are

affected plus her hips and arches. She goes to whirlpool therapy 2 days a

week and this has helped a lot. Also we do the warm baths when she's hurting

too and what you are doing too. Really there's nothing else I can tell you

other than I hold and rub my 9 1/2 dd until she's comfortable and feels

better. She's a fighter too!!

Ywellen

[Guest guest]

Hi,

Glad you found our group. My son is 11 and has Still's Disease,

also known as systemic JRA. How long has your daughter had JRA? What

type does she have? How long had your daughter been on steroids? I guess

she had been doing really well, and that's probably why her doctor felt

it was time to discontinue them? Or ... maybe not. Aside from Tolectin,

does she use any other meds? Does she see a pediatric rheumatologist or

some other type of doctor?

My son takes prednisone, indomethacin, plaquinel, methotrexate, cytotec,

miacalcin .... Seems like a lot of meds but this combination seems to be

doing well as far as controlling his symptoms.

Does your daughter get physical or occupational therapy? That might be

helpful. That, and I'd also tell the doctor that she's still having sore

and painful joints. Maybe she needs a stronger med to handle the

symptoms she's still having.

Take care,

Georgina

zimaah@... wrote:

>

> I have a 14 year old daughter with JRA. She is having a hard time

> with it now that she has been taken off prednisone. She recently

> started taking Tolectin. That dosen't seem to be helping much. I rub

> her with Ben-Gay and sometimes we use a footbath or heating pad. I

> would appreciate any suggestions you have on helping to releive her

> pain. She suffers in her wrist, knees, elbows and ankles. She has a

> rare rheumatoid condition, JRA is one of the symptons she suffers

> from.

[Guest guest]

My daughter is only 3 and has jra affecting her knees, ankles, toes, wrists,

and fingers. She has improved tremendously within the past 6 weeks or so

with her physical therapy and Naprosyn. She goes to therapy 2 times a week,

one day being pool therapy. I think for us the best relief comes from warm

baths or a swim in a heated pool. Most 3 year olds won't sit still long

enough to use heating pads or hot packs so the warm water is great. I'm sure

others will have different ideas for you that will help. Hope your daughter

will start to improve soon and will find relief. Best of luck,

[Guest guest]

hi, please give jenni my best wishes. i already had both of my hips

replaced 4 years a go. are they going to cement it so she can walk

immediately?? they wouldn't mine cuz i was only 18, i had a " no weight

bearing " status for 6 weeks followed by 2 weeks of " eggshell weight bearing "

status. i could not attend college either, i had to do both hips and both

knees before that. has she had her knees done yet? i had " bilateral knee

replacements " which just means they did them both at the same time. i would

not recommend this and when i have to do it again, i will not do it the same

way again. if she needs her knees done, start with the one on the same leg

as her new hip. this will give her better flexion in the new knee cuz the

hip will allow for it. my left knee doesnt bend as well as my right cuz it

was done before the left hip. if your hip doesnt bend, then theres no need

for the knee (new or not) to bend either. sorry to keep you, goodluck and

Godbless. ps, the other reason is self explanatory, it hurts twice as bad!!

love, brandy

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hi ,

Thanks for letting us know. I hope all goes well and Jenni's surgery has

a good outcome with no problems and no unexpected surprises. It's very

kind of you, to be so supportive and caring while Jenni goes through

this. I'm sure she appreciates your help more than words can say.

Yes, you're right. I think we could all do our part to help send a

little bit of cheer and good wishes, upon her return, by sending

electronic/animated email cards and greetings. For those who would like

to do so, let's send them directly to Jenni's email address at:

ChaosPearl@...

A few good online virtual card shops are:

http://www.hallmarkconnections.com/

http://www.123greetings.com/

http://www.cardcentral.net/

http://www.bluemountain.com/index.html

Thanks Again,

Georgina

Larinath wrote:

>

> It's been awhile since I contributed, as well as Jenni, but I thought I

> should let you all know that she went in for her second hip replacement

> surgery today.

>

> Early this year, she had one replaced, and the stress on the original one

> was too much, and caused too much degradation, and we knew it was only a

> matter of time before she had to have them both taken care of. Well, the

> time has come.

>

> Over the past two months of her trying to attend college, it has gotten

> steadily worse, until she was popping several pain pills just to be able to

> move on her own.

>

> So, we (she and I) decided that it would be best for her to get it replaced

> while she can.

>

> I just wanted to let you all know, and hopefully your thoughts and prayers

> will help her to a speedy recovery. I'm sure she'll appreciate it when she

> returns home and checks her mail.

>

>

[Guest guest]

Dear Amy

Write as much as you like. If people don't want to read it, they can

delete. But give people the choice to do that or to read it through and

maybe help.

Seems to me the mental confusion, indecision, etc all stem from candida.

Sort that out first and I am sure that everything will fall into place.

I think the food combining diet is nonsense, but that is just my

opinion. Great athletes and others who are super-fit combine food, and

don't forget that many foods are already combined within themselves,

and are perfectly digestible.

If that is the way you prefer to eat, then it won;t hurt you, but it is

not necessary.

Lee

[Guest guest]

Welcome Amy! We hope we can be of some help to you and vice versa! Mogdrmom

[Guest guest]

In a message dated 8/2/00 9:34:04 PM Central Daylight Time, tomf@...

writes:

<< I have been lurking in the background for quite some time now. >>

Hi Amy,

I'm glad you came out of lurking

<<We try to follow the Body Ecology Diet (BED). This diet talks a lot about

food combining. >>

I think there is a lot of benefit to food combining, especially in cases of

IBS. However, I feel it's been hard enough trying to stick to a candida

diet. I don't think I can do BED also...LOL

<>

That's good. Candida LOVES hormonal birth control methods.

<<Stupidly enough, I stopped following it. >>

Most of us need support for sticking to the proper diet. In fact, that's the

main reason why I am here

~

[Guest guest]

Hi Rosebud,

Welcome to the group! From someone who has had Lyme induced Meningitis, I

KNOW how you feel. :-( Hurts like hell, doesn't it? Thought I was dying

when I had it.

Hang in there ... it will get better!!

Jean

(TX)

[Guest guest]

Hi , My daughter is 8 years old, and also has systemic jra since

she was 5. I noticed your daughter is on Enbrel. My doctor wants to

start this on my daughter. I have heard it does not work as well on

systemic cases. Did you notice a difference and what is your thoughts

on this medication. How long was your daughter on Predisone? Do you

think the Enbrel was able to get her off it?

My daughter is on Methotrexate 17.5 mgs, Indocin, Predinsone 3mgs a

day, and folic acid. She still has some bad days and is very tired

alot. I just dont know if Enbrel is the answer.

Thanks in advace for any advice B.

> What a great place for information, knowledge is key to this. My

> daughter was diagnosed with systemic JRA 2 1/2 years ago and at the

> age of 5. We have had two bad flares and she is doing well now.

She

> is on Enbrel, Methotrexate, Folic Acid, Naprosyn, and just got off

> prednisone.

>

>

[Guest guest]

Hi , my daughter Amy was on prednisone 2.5 mg for about 6

months, she started the Enbrel before she was taken off the

Prednisone. She started initially on metho orally and because she of

her size they could not increase her oral dosage, switched her to

injections. She has been on metho for 2 1/2 years and still had

joint swelling. After just a few weeks of Enbrel all fluid build up

was completely gone and hopefully she will be taken off the metho in

Sept at her next rheumy appt. To look at her you cannot tell she has

arthritis, which is amazing, she has gone from basically bed ridden,

unable to feed or toilet herself to a happy active second grader with

minimal restrictions. She was able to stop physical and occupational

therapy after the Enbrel started.

> > What a great place for information, knowledge is key to this. My

> > daughter was diagnosed with systemic JRA 2 1/2 years ago and at

the

> > age of 5. We have had two bad flares and she is doing well now.

> She

> > is on Enbrel, Methotrexate, Folic Acid, Naprosyn, and just got

off

> > prednisone.

> >

> >

[Guest guest]

Tina,

Welcome to the list.

I hope you can find answers to your many questions.

It is to parents such as you that I gain inspiration to the road ahead I face. I have 3 childre, each with their disability but not so comparable to your story.

Well wishes.

Hello

Hello everyoneI am new on the list. I thought I would write in to introduce myself. My name is Tina. I have 3 children with multiple disabilities. My oldest, who is 18, is critically ill with a rare seizure disorder called the Lennox Gastaut Syndrome. She can have more than 100 seizures on a given day. She is on many anticonvulsants and has osteoporosis and osteopenia. Her most recent bone density revealed a 12% decrease in bone density over the last 2 years. We already have her on Calcium and Vitamin D, and I was wondering if there are any kids on the list with oseteoporosis? My middle child who is 16, has juvenile arthritis. She takes Celebrex, when I can get her to take medicine. She also had a bone density and has osteopenia and mild osteoporosis in her hands and in her spine. I have started her on Caltrate until I see her rheumatologist and see what she recommends.My youngest boy, who is 15, has spondyloarthritis, JRA. He also has a primary immune problem called hypogammablobulinemia which is a low IGG, level. He was getting intravenous gammaglobulin for the past 8 years until the side effects became worse than the treatments. His arthritis for the most part has been manageable though i am not sure what will happen now that he is off the gammaglobulin. When he was first diagnosed, he spent a year on crutches, not able to bend his legs at all. Once he was on the gamma treatments, he was pretty much stable. He is on azulfidene, Celebrex and Zantac. I was wondering are there any siblings with arthritis on the list? If so how do you parents handle getting them to take their meds? Now that they are in high school it is almost impossible to get them to take their meds. They were better with it when they were younger! Well I have made this email long enough. I look forward to corresponding with all of you. God Bless you allTinaFor links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

In a message dated 10/15/00 6:33:31 PM Eastern Daylight Time,

mark@... writes:

been having a bad month. I have been feeling depressed lately and I

guess I am looking for someone to talk to that may share the same

problems. >>

Mark,

You will find a lot of folks here to talk to. Most of us have depression,

too. There are a lot of good people here to help you. Just talk away and

share. Someone will junp in to answer any questions that you might have.

Good luck to you. Take care of you first and the rest will come to pass.

Hang with this group for a while.

Ginger-gehud119@...

Ginger--AIH-IN FLA.