Re: i need to know there is someone out there like me

[Guest guest]

Hi Lizzy. Wow, Juvenile RA is a tough break -- sounds like you need

lots of support. There are many people on this board with very

difficult struggles, and many who are coping well with the disease.

Are you still in school? Are you able to work? Do you have a good

rheumatologist who can help you? Life is different with RA -- but

it sounds like you really need some more help than you are getting.

Does your family understand and help you?

You might want to check the boards on the Arthritis Foundation --- I

think they have one specifically for JRA. It would be good for you

to talk to other young adults. But everyone here understands your

pain. Know that you can come here and share your stories any time.

Bonnie

>

> this is my first time joining or even looking up a support group.

i

> am 20 years old and i was diagnosed with JRA when i was 12 but i

> started having symptoms when i was 10. i have never really been

able

> to expain how frustrating it is to anyone because they wouldn't

> understand and nobody really wants to know. it's too painful for

them

> to even talk about. it almost as if they are in denial but i don't

> really help because i act like i don't have it even when i am not

> feelng well. i find myself disconnecting from reality at times

> because it is so hard to do some of the simplest of things. now

its

> not everyday that i am in pain that i cannot bear but i still have

> restrictions. i don't even remeber what it is like to bend my

wrists

> or do things normally. i usually have to find an alternative to

get

> simple tasks done. i usually put my strong face on and i get

through

> it but lately it has been alot worse. i have been having terrible

> flare ups and sometime i cannot even open my mouth all the way to

> eat, so i have lost a significant amount of weight. i never looked

> sick before so that is another thing that helped me get through

the

> day but now i do. i'm too skinny and it's scary. i am so afraid of

> the future and what it holds for me. i have a boyfriend that is

very

> supportive but sometimes he also gets frustrated and gets mad. not

at

> me though, i think it is at the fact that i have it but he never

> tells me why he is mad. noone really likes to talk about it and i

> have gotten up to the point where i need to because if i don't i

will

> become depressed and i need to be positive because that is what

has

> gotten me this far. i just feel like right now i need a push to

help

> me get along.

>

[Guest guest]

thank you bonnie for the information, i will look it up. i don't go

to school because i have to work and if i do both they may take away

my benefits and i am in no place right now where i can deal with

that. see i am only allowed to work 20 hours a week and if i go to

school they see that as a full time job. i have a very good

rheumatologist and things were perfect at first. it was almost as if

i never had it and i was so happy but things took a turn for the

worst. i don't know what it is. i have a hard time talking to my

family about it because my father was also diasbled and i know how

that affected me and my family and i don't want to burden them. i was

raised to be strong minded and if it wasn't for that i don't know how

different my life would be. it's hard living and getting up everyday

but i think it's better to get up instead of sitting and just

thinking about how diffficult it is. i just feel like i have come to

the point where i really do need some support be if from family or

just someone who knows what it's like not being able to do all the

things you want to do. to not be normal or know what it's like to be

normal. i envy my father because he only suffered 7 ears and he lead

a normal life before that. i'm going on 10 years and there is no end

in sight. Is there a way to cope with the pain? How can i make them

understand without hurting them and making them sad? what do i do

about the weight loss?

-Liz

> >

> > this is my first time joining or even looking up a support group.

> i

> > am 20 years old and i was diagnosed with JRA when i was 12 but i

> > started having symptoms when i was 10. i have never really been

> able

> > to expain how frustrating it is to anyone because they wouldn't

> > understand and nobody really wants to know. it's too painful for

> them

> > to even talk about. it almost as if they are in denial but i

don't

> > really help because i act like i don't have it even when i am not

> > feelng well. i find myself disconnecting from reality at times

> > because it is so hard to do some of the simplest of things. now

> its

> > not everyday that i am in pain that i cannot bear but i still

have

> > restrictions. i don't even remeber what it is like to bend my

> wrists

> > or do things normally. i usually have to find an alternative to

> get

> > simple tasks done. i usually put my strong face on and i get

> through

> > it but lately it has been alot worse. i have been having terrible

> > flare ups and sometime i cannot even open my mouth all the way to

> > eat, so i have lost a significant amount of weight. i never

looked

> > sick before so that is another thing that helped me get through

> the

> > day but now i do. i'm too skinny and it's scary. i am so afraid

of

> > the future and what it holds for me. i have a boyfriend that is

> very

> > supportive but sometimes he also gets frustrated and gets mad.

not

> at

> > me though, i think it is at the fact that i have it but he never

> > tells me why he is mad. noone really likes to talk about it and i

> > have gotten up to the point where i need to because if i don't i

> will

> > become depressed and i need to be positive because that is what

> has

> > gotten me this far. i just feel like right now i need a push to

> help

> > me get along.

> >

>

[Guest guest]

Dear Lizzie,

I didn't have Juvenile RA but I have RA now that I am 23. I joined a

group on facebook and alot of the people there had JRA and now have

RA. Do you have a facebook account? If so you should join the

rheumatoid arthritis support group. There's a couple of groups on

there but that one is the best.If not, you should get an account (it's

free) and then join the group.

Sometimes when I lose my appetite I drink boost shakes. Maybe you

could try that for a while?

Libby

> > >

> > > this is my first time joining or even looking up a support group.

> > i

> > > am 20 years old and i was diagnosed with JRA when i was 12 but i

> > > started having symptoms when i was 10. i have never really been

> > able

> > > to expain how frustrating it is to anyone because they wouldn't

> > > understand and nobody really wants to know. it's too painful for

> > them

> > > to even talk about. it almost as if they are in denial but i

> don't

> > > really help because i act like i don't have it even when i am not

> > > feelng well. i find myself disconnecting from reality at times

> > > because it is so hard to do some of the simplest of things. now

> > its

> > > not everyday that i am in pain that i cannot bear but i still

> have

> > > restrictions. i don't even remeber what it is like to bend my

> > wrists

> > > or do things normally. i usually have to find an alternative to

> > get

> > > simple tasks done. i usually put my strong face on and i get

> > through

> > > it but lately it has been alot worse. i have been having terrible

> > > flare ups and sometime i cannot even open my mouth all the way to

> > > eat, so i have lost a significant amount of weight. i never

> looked

> > > sick before so that is another thing that helped me get through

> > the

> > > day but now i do. i'm too skinny and it's scary. i am so afraid

> of

> > > the future and what it holds for me. i have a boyfriend that is

> > very

> > > supportive but sometimes he also gets frustrated and gets mad.

> not

> > at

> > > me though, i think it is at the fact that i have it but he never

> > > tells me why he is mad. noone really likes to talk about it and i

> > > have gotten up to the point where i need to because if i don't i

> > will

> > > become depressed and i need to be positive because that is what

> > has

> > > gotten me this far. i just feel like right now i need a push to

> > help

> > > me get along.

> > >

> >

>

[Guest guest]

thanks for the tip libby i don't have a facebook account but i

will be gettting one now. i do drink protein shakes but i am still

under weight.

> > > >

> > > > this is my first time joining or even looking up a support

group.

> > > i

> > > > am 20 years old and i was diagnosed with JRA when i was 12

but i

> > > > started having symptoms when i was 10. i have never really

been

> > > able

> > > > to expain how frustrating it is to anyone because they

wouldn't

> > > > understand and nobody really wants to know. it's too painful

for

> > > them

> > > > to even talk about. it almost as if they are in denial but i

> > don't

> > > > really help because i act like i don't have it even when i am

not

> > > > feelng well. i find myself disconnecting from reality at

times

> > > > because it is so hard to do some of the simplest of things.

now

> > > its

> > > > not everyday that i am in pain that i cannot bear but i still

> > have

> > > > restrictions. i don't even remeber what it is like to bend my

> > > wrists

> > > > or do things normally. i usually have to find an alternative

to

> > > get

> > > > simple tasks done. i usually put my strong face on and i get

> > > through

> > > > it but lately it has been alot worse. i have been having

terrible

> > > > flare ups and sometime i cannot even open my mouth all the

way to

> > > > eat, so i have lost a significant amount of weight. i never

> > looked

> > > > sick before so that is another thing that helped me get

through

> > > the

> > > > day but now i do. i'm too skinny and it's scary. i am so

afraid

> > of

> > > > the future and what it holds for me. i have a boyfriend that

is

> > > very

> > > > supportive but sometimes he also gets frustrated and gets

mad.

> > not

> > > at

> > > > me though, i think it is at the fact that i have it but he

never

> > > > tells me why he is mad. noone really likes to talk about it

and i

> > > > have gotten up to the point where i need to because if i

don't i

> > > will

> > > > become depressed and i need to be positive because that is

what

> > > has

> > > > gotten me this far. i just feel like right now i need a push

to

> > > help

> > > > me get along.

> > > >

> > >

> >

>