hello

August 2, 2006

Guna,

You do understand what I meant by wonderful.

This disease also makes those of us with it and those around us more caring

and sensitive to other people's hurts and pains etc.

In my 33 yrs I learned to live each day to the best of your ability.

Little things - like making a fist- are something we NEVER take for granted.

This disease can either make a person/family outspoken or shy - I have been

BOTH. But ya gotta be willing to speak up and stand up for what you want and

need!

Glad treatment is helping.

What's your son's name by the way? My family pic(not recent, but we still

look the same) as well as a few of me in Atlanta during the AJAO 2006

conference are posted in the photo section of the group.

love, prayers and blessings,

If God leads you to it...He will lead you through it

August 2, 2006

,

The AF is short for the Arthritis Foundation. Have you gotten a 504 plan

in place or a IEP done yet for him in School?

The Socializing with kid's with JRA is GREAT. Your on the right road

now. As some kid's do not have that going for them and feel so alone. So the

AJAO Conference is also great thing to do also. As this Group List try to go

each year and continue to meet new friends and meet the old ones. Very tight

group :-). Look at the AJAO 2006 Pictures. Going to Our First one in 2004 San

Diego was a Experience that still goes with us. It was a Eye opener and

Overwhelming part of our lives.

Here in Ga Our AF has what is called Family Fun Day. It's so cool to see

the kids and Parent's socializing. Meeting other's like on this List who

understand what we live with each day. Some on this List are from Ga. I also

encourage each parent I meet to come to this Group. It sure helps ALOT.

Robbin

August 2, 2006

Thankyou for the warm welcome! We are in Oklahoma. I think I understand what

you mean by wonderful....I take nothing for granted now. Even though it isn't

me with this disease, I have had to watch my baby struggle with things for

nearly 3 years now. Since he's begun treatment he's drastically improved, and

with each milestone I've cried with joy. His goal through physical therapy is

to make a fist by the end of summer, something most people don't even think

about.

thewalkers1989@... wrote: welcome ,

Glad you found this group - even though it's sad to have a reason.

I am . I am 36 and had JRA since I was 3 - so I am one of the

veteran's in this group. This group is awesome! It is full of many knowlegeable

and very caring people. Ask any questions - someone probably knows the answer

or can tell you where to look.

As I said I have had this wonderful (can explain this if you need me to) and

awful disease since I was 3 - so if I can be of ANY help let me know. I am

married (17 yrs) to Greg and have a HEALTHY 5.5 yr old daughter, Destiny. We

live in Alabama.

Looking forard to getting to know you better.

love, prayers, and blessings

(age 36 - dx poly @ age 3)

If God leads you to it...He will lead you through it

wife to Greg 17 years

Mommy to Destiny age 5

August 2, 2006

Hi ,

I am glad that you were able to find our group. How old is your son?

Have you found the enbrel and mtx. to be helpful?

I came to this group over 3 years ago when my daughter began having

symptoms of jra. Our journey to diagnosis seemed to take forever and

this group was so supportive to me during that time as well as thru

the countless flares and relapses.

I know what you mean about the challenges of talking to others about

this disease...I suppose anyone that has some type of disability must

feel a connection to those that have " walked in their shoes " . There is

an understanding there that only comes with having walked thru the

fire!

You mentioned that you were hoping to find some sort of local support

group. You will find on this list people come from all over the US

and beyond! I like that because it gives a global knowledge as to

what studies are being done and the treatment plans offered by

different rheumies.

However there is also benefit to having a local support. Have you

ever contacted the Arthritis Foundation chapter nearest you? They may

be able to give you some direction as to if anything is already in

place.

I have just recently become tentatively involved with our local AF.

My daughter attended the jra camp and that prompted me to help out a

little. They are starting a mentoring program that pairs newly

diagnosed parents with parents that have been on this journey for

awhile. I think that will be an awesome resource and I hope to help

out with it.

Once again, welcome to our group. Please feel at home and share as

often as you would like. You have found a safe place where you will

be supported and encouraged as well as enlightened! :-)

Blessings,

( daughter Aundrea 11 systemic jra)-

-- In , " " <jasina2005@...> wrote:

>

> Hello all! My son was diagnosed wih JRA in March, though he's had

> problems since the fall of '03. He's currently on Methotrexate and

> Enbrel, he was taking Naproxen but has recently stopped taking it.

> I've been in need of a friend to talk to that understands, no one I

> know really 'gets' the situation. I found a group on myspace that

> refered me here, is this local? My hubby and I have been

considering

> founding a support type group for families in our town as there

isn't

> one right now. I am always open to learning more about arthritis, I

> don't think I'll ever know enough about it. I hope to make some

friends

> here, have a great day!

>

August 2, 2006

HI -

Welcome! I am sorry you had reason to find us... but I am glad you did.

My daughter was diagnosed in July of 2001 at the age of 3. I found this group

two years ago and it has been part of my foundation ever since. Especially so

soon after diagnosis, it can be so frustrating when people cannot understand all

of the issues - the anxiety caused by all of the pain and the new medications,

the procedures - a mother's concerns about the future - all of it. Here, you

will find a knowing ear any time you need it.

There are parents on this board with kids of every age and many different

diagnosis. There are adults who have lived with the disease and have decades of

first hand knowledge and advice. And as you have seen, we are fortunate to vew

frequent postings about research updates, personal triumphs, etc from all over

(mostely through the diligence of Georgina, our tireless moderator). We live

all over the country - and even across the globe.

I don't think there is a medicine, treatment or concern you could ask about

and not find some help - or at least some encouragement.

I hope you find exactly what you need here-

Best wishes -

Colleen (mom to Caitlin, 8, systemic)

<jasina2005@...> wrote:

Hello all! My son was diagnosed wih JRA in March, though he's had

problems since the fall of '03. He's currently on Methotrexate and

Enbrel, he was taking Naproxen but has recently stopped taking it.

I've been in need of a friend to talk to that understands, no one I

know really 'gets' the situation. I found a group on myspace that

refered me here, is this local? My hubby and I have been considering

founding a support type group for families in our town as there isn't

one right now. I am always open to learning more about arthritis, I

don't think I'll ever know enough about it. I hope to make some friends

here, have a great day!

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

Groups are talking. We & acute;re listening. Check out the handy changes to

Groups.

August 2, 2006

AF office? lol, obviously no. What is that? He is 10, going into the 5th

grade tis year. He attended a camp for kids with arthritis in Gutherie, OK a

few weeks ago and had a blast, he got to meet kids that deal with similar stuff

for the first time and that helped him a lot.

Robbin40@... wrote: Hi ,

How old is your Son? What grade is he in? JRA is Struggles but these

kid's are troopers to. Here you have a range of ages who have JRA. You have the

Veterans to JRA and then you have children 1 yr and up. You can just type away

and vent how your feeling. You can chime in and tell what you know. You ask

a question and I bet someone on here will answer you or tell you what to do

about it. Glad you found this site.

We just had the AJAO Conference here in Atlanta Ga. So there's pictures

on the site to look at. The Next AJAO Conference is in Hershey, Pa July 1 -

4th.2007. Have you called your local AF office yet?

Robbin

August 2, 2006

He was diagnosed in March and was immediatly started on Naproxen, 2 different

doese-1 for morning and 1 for evening. He was also immediatly started on

Methrexate, (mtx for short?) .7 ml once a week. The injections started the day

after we found out it was arthritis, home health came and trained us how to do

itthe first 3 times. It was a blessing to find out what he had so treatments

could begin and I was pleased that his doc wanted to jump right in and start

treating him, but I was still in shock of the diagnosis, ya know? About 2

months ago he began getting 2 injections of Enbrel twice a week (.6 ml) I have

to say it looked scary when we opened THAT one! All the mixing, um, swirling,

and different pieces......the home health nurses were reading the instructions

right along with me because they didn't know about it either! He stopped taking

his evening dose of mtx 4 weeks ago and stopped his morning dose just the other

day and has had no problems. He's also been

going to a physical therapist 3x a week. (only because it's summer) I started

seeing big improvements around the end of May. He was beginning to grasp the

door handles with one hand to turn them, he began riding his bike in the grass,

he stopped taking so many breaks when playing outdoors. He began hanging from

the swingset with 2 hands, then 1 at a time....oh the improvements have been

almost unbelievable. He has recently developed a tic of sorts, he blinks hard,

and uncontrolably at times. I tink it might be his body reacting to anxiety?

It began at camp--which I was unable to drive him to because my youngest baby

was sick and in the hospital. I think that possibly with all the arthritis

treatments and his brother being sick and being away from home for the first

time (besides family and close friends) may have caused it.

Hi ,

I am glad that you were able to find our group. How old is your son?

Have you found the enbrel and mtx. to be helpful?

I came to this group over 3 years ago when my daughter began having

symptoms of jra. Our journey to diagnosis seemed to take forever and

this group was so supportive to me during that time as well as thru

the countless flares and relapses.

I know what you mean about the challenges of talking to others about

this disease...I suppose anyone that has some type of disability must

feel a connection to those that have " walked in their shoes " . There is

an understanding there that only comes with having walked thru the

fire!

You mentioned that you were hoping to find some sort of local support

group. You will find on this list people come from all over the US

and beyond! I like that because it gives a global knowledge as to

what studies are being done and the treatment plans offered by

different rheumies.

However there is also benefit to having a local support. Have you

ever contacted the Arthritis Foundation chapter nearest you? They may

be able to give you some direction as to if anything is already in

place.

I have just recently become tentatively involved with our local AF.

My daughter attended the jra camp and that prompted me to help out a

little. They are starting a mentoring program that pairs newly

diagnosed parents with parents that have been on this journey for

awhile. I think that will be an awesome resource and I hope to help

out with it.

Once again, welcome to our group. Please feel at home and share as

often as you would like. You have found a safe place where you will

be supported and encouraged as well as enlightened! :-)

Blessings,

( daughter Aundrea 11 systemic jra)-

-- In , " " <jasina2005@...> wrote:

>

> Hello all! My son was diagnosed wih JRA in March, though he's had

> problems since the fall of '03. He's currently on Methotrexate and

> Enbrel, he was taking Naproxen but has recently stopped taking it.

> I've been in need of a friend to talk to that understands, no one I

> know really 'gets' the situation. I found a group on myspace that

> refered me here, is this local? My hubby and I have been

considering

> founding a support type group for families in our town as there

isn't

> one right now. I am always open to learning more about arthritis, I

> don't think I'll ever know enough about it. I hope to make some

friends

> here, have a great day!

>

August 2, 2006

,

I am glad that you are seeing some real improvement! Sounds like

you were very fortunate at least in getting agressive treatment

early on.

That must have been so hard on you to have one child in the hospital

while the other went on his first camping excursion. I hope that

now that he is back home perhaps he can relax and enjoy the rest of

the summer and maybe the tic's will go away. I remember my neighbor

had that similar tic of blinking his eyes real hard and he would

also open his mouth like yawning all the time. His was also induced

from stress. Hopefully giving it some time and it will go away...if

not then maybe speaking with his ped. about it would be helpful.

Which part of the country do you live? Have you ever looked at the

arthritis foundation website? I believe its

http://www.arthritis.org/ If you look on the left side and scroll

down you will see juvenile arthritis. click on that and then there

is tons of info including free brochures for parents, teachers etc...

Anyway it has lots of useful information and should also be able to

direct you as to any type of support group or local arthritis

foundation chapter in your area.

Have you ever completed a 504 plan with your child's school? Its

basically just a form that allows you to explain the type of disease

your child has and any modifications that may be needed in order to

improve his school day/performance.

Perhaps you already have this book but if not I will just go ahead

and suggest it. " Its not just growing pains " by Dr. Lehman. It

gives a wonderful overview of the different types of arthritis,

explanis labs, medications, treatment options, 504 plans etc..

One other thing about this group. If you look at the top of the page

on the left hand side you will see files...lots of good information

in there. Also the photo album helps to connect a name to a face.

Sorry if I have bored you with information that you already have.

You never know what is just being repeated or if it might be useful.

Take Care,

(Aundrea 11 systemic jra)

-

-- In , jason terry <jasina2005@...> wrote:

>

> He was diagnosed in March and was immediatly started on Naproxen,

2 different doese-1 for morning and 1 for evening. He was also

immediatly started on Methrexate, (mtx for short?) .7 ml once a

week. The injections started the day after we found out it was

arthritis, home health came and trained us how to do itthe first 3

times. It was a blessing to find out what he had so treatments

could begin and I was pleased that his doc wanted to jump right in

and start treating him, but I was still in shock of the diagnosis,

ya know? About 2 months ago he began getting 2 injections of Enbrel

twice a week (.6 ml) I have to say it looked scary when we opened

THAT one! All the mixing, um, swirling, and different

pieces......the home health nurses were reading the instructions

right along with me because they didn't know about it either! He

stopped taking his evening dose of mtx 4 weeks ago and stopped his

morning dose just the other day and has had no problems. He's also

been

> going to a physical therapist 3x a week. (only because it's

summer) I started seeing big improvements around the end of May.

He was beginning to grasp the door handles with one hand to turn

them, he began riding his bike in the grass, he stopped taking so

many breaks when playing outdoors. He began hanging from the

swingset with 2 hands, then 1 at a time....oh the improvements have

been almost unbelievable. He has recently developed a tic of sorts,

he blinks hard, and uncontrolably at times. I tink it might be his

body reacting to anxiety? It began at camp--which I was unable to

drive him to because my youngest baby was sick and in the hospital.

I think that possibly with all the arthritis treatments and his

brother being sick and being away from home for the first time

(besides family and close friends) may have caused it.

>

> Hi ,

>

> I am glad that you were able to find our group. How old is your

son?

> Have you found the enbrel and mtx. to be helpful?

>

> I came to this group over 3 years ago when my daughter began

having

> symptoms of jra. Our journey to diagnosis seemed to take forever

and

> this group was so supportive to me during that time as well as

thru

> the countless flares and relapses.

>

> I know what you mean about the challenges of talking to others

about

> this disease...I suppose anyone that has some type of disability

must

> feel a connection to those that have " walked in their shoes " .

There is

> an understanding there that only comes with having walked thru the

> fire!

>

> You mentioned that you were hoping to find some sort of local

support

> group. You will find on this list people come from all over the US

> and beyond! I like that because it gives a global knowledge as to

> what studies are being done and the treatment plans offered by

> different rheumies.

>

> However there is also benefit to having a local support. Have you

> ever contacted the Arthritis Foundation chapter nearest you? They

may

> be able to give you some direction as to if anything is already in

> place.

>

> I have just recently become tentatively involved with our local

AF.

> My daughter attended the jra camp and that prompted me to help out

a

> little. They are starting a mentoring program that pairs newly

> diagnosed parents with parents that have been on this journey for

> awhile. I think that will be an awesome resource and I hope to

help

> out with it.

>

> Once again, welcome to our group. Please feel at home and share as

> often as you would like. You have found a safe place where you

will

> be supported and encouraged as well as enlightened! :-)

>

> Blessings,

> ( daughter Aundrea 11 systemic jra)-

>

> -- In , " " <jasina2005@> wrote:

> >

> > Hello all! My son was diagnosed wih JRA in March, though he's

had

> > problems since the fall of '03. He's currently on Methotrexate

and

> > Enbrel, he was taking Naproxen but has recently stopped taking

it.

> > I've been in need of a friend to talk to that understands, no

one I

> > know really 'gets' the situation. I found a group on myspace

that

> > refered me here, is this local? My hubby and I have been

> considering

> > founding a support type group for families in our town as there

> isn't

> > one right now. I am always open to learning more about

arthritis, I

> > don't think I'll ever know enough about it. I hope to make some

> friends

> > here, have a great day!

> >

>

August 4, 2006

Donna,

lololol. Ok I have to hand it to the Veterans here. The know how it is

the first time. Like you Donna. You get the younger ones out of the shell. You

came out of your shell. came out of her's. came out if hers

and several came out of their shell at the Conference.

Even though we are brought together by this Disease. We find out we are

not alone in it. We can speak up , Speak out, Speak loud, Speak softly. We can

be Caring, Passionate, understanding. Encouraging. This one Disease may have

gotten in our family but we know how to handle what we have to. Fight the

Disease. Never giving up Hope, Faith and Love.

Robbin

December 7, 2006

Dorthy - has your son ever had an all night EEG? My daughter was

diagnosed PDD-NOS at one time. We later found out after a long (4

day)EEG that she was Landau Kleffner Syndrome. We did not suspect

epilepsy until she had some weird episodes where she had panic

attacks and then went to sleep. To make a long story short, she was

put on high dose steroids and regained her speech in about 1 month.

I think there are other kids out there that may be LKS but are

misdiagnosed as autistic. Just a thought - Martha

>

> Hi,

> My name is Dorthy. I am the mother of a thirteen year old son

with

> autism as well as epilepsy. He takes meds for his seizures, but

today

> he had what I can only call a walking seizure. It was like he was

in a

> trance! Just kept walking and did not respond to me at all. He had

to

> be guided to the car and then he lay down and went to sleep. This

is a

> new one on us. Usually he just pretty much stares into space or

falls

> over if he has a seizure, which is rare these days. I look forward

to

> learning a lot here. Thanks for listening.

> Dorthy

>

December 7, 2006

Dorthy - has your son

-- In , " Dorthy M. " <demcconel@...>

wrote:

>

> Hi,

> My name is Dorthy. I am the mother of a thirteen year old son

with

> autism as well as epilepsy. He takes meds for his seizures, but

today

> he had what I can only call a walking seizure. It was like he was

in a

> trance! Just kept walking and did not respond to me at all. He had

to

> be guided to the car and then he lay down and went to sleep. This

is a

> new one on us. Usually he just pretty much stares into space or

falls

> over if he has a seizure, which is rare these days. I look forward

to

> learning a lot here. Thanks for listening.

> Dorthy

>

May 4, 2007

Hi Kristy. I know exactly what you are saying with being " raw " to the news. I

found out in Feb that I likely have HepC, but hasn't yet been confirmed. Welcome

to the group. I belong to other online groups, and they are a great help and a

shoulder to lean on.

Jenn

Kristy <kmfoster013079@...> wrote:

Hi, my name is Kristy, and I have known I have HCV for all of 48 hours

now. Right now things are still a bit raw for me and I have tons of

questions to ask. I hope that I can stand up to this and keep moving

on. Thats all Im going to say for now. Hope to hear from you soon.

Thanks

Kristy

May 5, 2007

http://www.liverfoundation.org

This is about the BEST place to find out information and treatment

options........sorry to hear ya got the dragon....(Hep

C)...........make sure you get GENOTYPED and a viral load........this

will help in treatment option!

>

> Hi, my name is Kristy, and I have known I have HCV for all of 48 hours

> now. Right now things are still a bit raw for me and I have tons of

> questions to ask. I hope that I can stand up to this and keep moving

> on. Thats all Im going to say for now. Hope to hear from you soon.

>

> Thanks

>

> Kristy

>

May 5, 2007

Hi Kristy, it takes abit to get over the shock. I know it rocked my world for

awhile til I got stubborn and decided the dragon won't get the best of me lol.

I am almost into week 6 of treatment and so far I haven't reacted badly to it,

hopefully that continues. I am geno-type 1-b. You should be starting other

tests shortly to find out your viral load etc. Take care sweetie...hugs...pat

Kristy <kmfoster013079@...> wrote:

Hi, my name is Kristy, and I have known I have HCV for all of 48 hours

now. Right now things are still a bit raw for me and I have tons of

questions to ask. I hope that I can stand up to this and keep moving

on. Thats all Im going to say for now. Hope to hear from you soon.

Thanks

Kristy

May 5, 2007

Kristy

Welcome to the group. Yes it is a bit of a shock to find out one has HCV as

many of us have no idea. We are often diagnosed when we are having tests for

other things. It does take a while for it all to sink in.

Kristy <kmfoster013079@...> wrote:

Hi, my name is Kristy, and I have known I have HCV for all of 48 hours

now. Right now things are still a bit raw for me and I have tons of

questions to ask. I hope that I can stand up to this and keep moving

on. Thats all Im going to say for now. Hope to hear from you soon.

Thanks

Kristy

May 6, 2007

Well I have an appointment this next week to discuss the procedures and options.

I am not looking forward to it, but then again I am. The past couple of days I

have been thinking about my lif and at first I thought I was destend for

heartache and mysery. Then I re-evaluated all the really rough pionts of my

life. and realized I got life lessons when I really needed them most. This one

I realized was a lesson for responseability. I am a little absent minded and

scatterbrained most of the time. HCV in my mind is God telling me to get things

together. I guess we will have to wait and see if I pass. lol

Talk to you later

Kristy M.

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

May 6, 2007

I kinda' feel the same way.. I'm headed for the tests, reluctantly...have to

find a GOOD doctor... Take care and will talk to you later.. Shari

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

May 12, 2007

Hey Kristy,

I hear you I am new to this Hep C thing too about 5 months now. My ex calls me

from prison says hm I think you should get a test for Hepatitis. I did -- I am

positive. Then I think for a while and get my son tested I did not for a couple

of months because I was in denial and praying to God he would please not let

this happen to my son. My son-- positive. I am now married and pregnant. Scared

out of my socks that my new baby will get this bullcrap too. I know I can not

get treatment now during pregnancy. NOR could I afford it anyway and even when I

talked to a doctor about it they say well with your history of a suicide attempt

noone will give you Interferon anyway--( what he really ment is you dont have

insurance worth a crap so I dont give a shit) Money talks and I am just a

working girl-- a nurse. So not sure if I got this from a patient or my ex or

some needle stick from my past but I have it. I am thinking like this. Why would

a God that says he loves me allow me to die after I get clean and straighten my

life up?? If He is that cold then He is not what I want to have as a higher

power anyway. So... I hear you girl. This is scary stuff. I dont have any

symptoms except for being a bit tired now but that can be pregnancy. I have and

will continue to inform my ob doc of all I know about this. Which is still that

there is not much I can do right now. So I choose to dance when I can. Sing a

song when I feel like killing my ex!! Or blaming him or being just mad at the

world I work or play with my son at the park and try not to cry in front of him

anymore.

So I hope you keep your head up too and smile today everyone out there feeling

blue due to Hep C Dragon-- get up and shake your groove thang!!

Love yall!!

from Texas

Hello

Hi, my name is Kristy, and I have known I have HCV for all of 48 hours

now. Right now things are still a bit raw for me and I have tons of

questions to ask. I hope that I can stand up to this and keep moving

on. Thats all Im going to say for now. Hope to hear from you soon.

Thanks

Kristy

May 12, 2007