Re: i don't know what to do...can anybody help?

[Guest guest]

I am so sorry that you have gotten this so early in life! I too am new to

> RA and the other things that I have, although I am 48. I have the same prob.

> at work. My coworkers think they are being funny or just trying to lighten

> it up I guess, but on my bad days *like yesterday* they can just say the

> stupidest things that really make me feel bad, and these are grownups!! I

> hope that you and your parents can figure out a way to help your siblings

> understand!!

Hugz sue in WA

i have smaller siblings and they just don't seem

> to understand what i am going through and neither I or my parents don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things

[Guest guest]

I am so sorry that you have gotten this so early in life! I too am new to

> RA and the other things that I have, although I am 48. I have the same prob.

> at work. My coworkers think they are being funny or just trying to lighten

> it up I guess, but on my bad days *like yesterday* they can just say the

> stupidest things that really make me feel bad, and these are grownups!! I

> hope that you and your parents can figure out a way to help your siblings

> understand!!

Hugz sue in WA

i have smaller siblings and they just don't seem

> to understand what i am going through and neither I or my parents don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things

[Guest guest]

Dear roseysmilez -

I'm so sorry that you're dealing with RA and, on top of that, teasing

from your siblings. I hope that your doctor will soon find the right

medications for you

There are books that help young children understand disabilities

better. I wish I knew some titles for you. Maybe you or your parents

could search Amazon.com and see if there are any books or videos/DVDs

that would interest and educate your brothers and sisters.

Anytime you see a show on tv where J. Fox is talking about what

it's like to live with Parkinsons Disease or any other time there's

something visual that might catch their attention, see if you can have

someone record it. Then, perhaps, you and your parents can sit with

your siblings and talk with them. Even though RA is different from

Parkinsons, different from someone who has lost a leg, different from

Reeve's paralysis, etc., as they see other people who deal

with disabilities--their moments of trouble and of triumph--it might

help them begin to get some idea of what you face every day.

You are very brave to face this disease--especially at such a young

age. As your siblings get older, hopefully they will begin to learn

from your courage. (And, when I say " courage, " I don't mean that you

never complain or go through times of weakness. Sometimes we feel light

and bright, and other times we feel tired, sad, discouraged or angry.

But, it is courageous just to wake up every day and try however you can

to deal with RA.)

And maybe all of us in this group can let you know when we see some

book or movie, etc. that could help you teach your brothers and

sisters.

By the way, is there a support group in your area for young people with

disabilities? Maybe your doctor will know. Support groups are great.

You don't all have to have the same thing. Just being with other people

your age who understand what it's like to be 16, having to deal with

disability, can be so helpful. Plus, you'd probably get even more ideas

of how to deal with siblings!

Many blessings to you. Please let us know how it goes.

Prakasha

On Nov 11, 2005, at 11:32 PM, roseysmilez wrote:

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

> seem

> to understand what i am going through and neither I or my parents

> don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.                   

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear roseysmilez -

I'm so sorry that you're dealing with RA and, on top of that, teasing

from your siblings. I hope that your doctor will soon find the right

medications for you

There are books that help young children understand disabilities

better. I wish I knew some titles for you. Maybe you or your parents

could search Amazon.com and see if there are any books or videos/DVDs

that would interest and educate your brothers and sisters.

Anytime you see a show on tv where J. Fox is talking about what

it's like to live with Parkinsons Disease or any other time there's

something visual that might catch their attention, see if you can have

someone record it. Then, perhaps, you and your parents can sit with

your siblings and talk with them. Even though RA is different from

Parkinsons, different from someone who has lost a leg, different from

Reeve's paralysis, etc., as they see other people who deal

with disabilities--their moments of trouble and of triumph--it might

help them begin to get some idea of what you face every day.

You are very brave to face this disease--especially at such a young

age. As your siblings get older, hopefully they will begin to learn

from your courage. (And, when I say " courage, " I don't mean that you

never complain or go through times of weakness. Sometimes we feel light

and bright, and other times we feel tired, sad, discouraged or angry.

But, it is courageous just to wake up every day and try however you can

to deal with RA.)

And maybe all of us in this group can let you know when we see some

book or movie, etc. that could help you teach your brothers and

sisters.

By the way, is there a support group in your area for young people with

disabilities? Maybe your doctor will know. Support groups are great.

You don't all have to have the same thing. Just being with other people

your age who understand what it's like to be 16, having to deal with

disability, can be so helpful. Plus, you'd probably get even more ideas

of how to deal with siblings!

Many blessings to you. Please let us know how it goes.

Prakasha

On Nov 11, 2005, at 11:32 PM, roseysmilez wrote:

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

> seem

> to understand what i am going through and neither I or my parents

> don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.                   

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm going to think about it and see if I can come up with some ideas

for you. Try not to get angry with them for not understanding; it will

make things worse. Be kind to yourself, think good thoughts about

yourself, have hope for yourself, and it will matter less what others

say or do.

Sierra

--- In , " roseysmilez " <roseysmilez@y...>

wrote:

>

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

seem

> to understand what i am going through and neither I or my parents

don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.

>

[Guest guest]

I'm going to think about it and see if I can come up with some ideas

for you. Try not to get angry with them for not understanding; it will

make things worse. Be kind to yourself, think good thoughts about

yourself, have hope for yourself, and it will matter less what others

say or do.

Sierra

>

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

seem

> to understand what i am going through and neither I or my parents

don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.

>

[Guest guest]

thanks for your advise and i will follow it, it's just so hard having all of

this stuff now in my life but thanks again and i am wondering do you have RA or

some other kind of thing or what? by the way my name is jacque...

snowdrift52003 <snowdrift52003@...> wrote:I'm going to think about it and

see if I can come up with some ideas

for you. Try not to get angry with them for not understanding; it will

make things worse. Be kind to yourself, think good thoughts about

yourself, have hope for yourself, and it will matter less what others

say or do.

Sierra

--- In , " roseysmilez " <roseysmilez@y...>

wrote:

>

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

seem

> to understand what i am going through and neither I or my parents

don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.

>

[Guest guest]

thanks for your advise and i will follow it, it's just so hard having all of

this stuff now in my life but thanks again and i am wondering do you have RA or

some other kind of thing or what? by the way my name is jacque...

snowdrift52003 <snowdrift52003@...> wrote:I'm going to think about it and

see if I can come up with some ideas

for you. Try not to get angry with them for not understanding; it will

make things worse. Be kind to yourself, think good thoughts about

yourself, have hope for yourself, and it will matter less what others

say or do.

Sierra

>

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

seem

> to understand what i am going through and neither I or my parents

don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.

>

[Guest guest]

I'm sorry you've had so much to deal with at such a young age.

Although I was young when I was diagnosed,

I was around 23, single and not living home. I was teased by

friends, but that was because I always tried

to make jokes about it myself, so they weren't laughing AT me, they

were laughing WITH me and that is ok

with me. I called myself the gimp with the limp among other things. I

didn't want to be felt sorry for, so I

tried using humor because I like making people laugh. Of course not

everyone has my sense of humor and

doesn't deal with it this way.

One accident I had when I was 8 brought much teasing by my brother. I

was kicked in the face by a horse,

which knocked out my front teeth and broke my jaw. Although he

probably saved my life by carrying me home,

the teasing was non-stop, especially when he was around his friends.

Even though the surgeons put me back together

as if nothing ever happened (with the exception of needing dentures

at such a young age, I was always the toothless

bean pole. Over the years, I found the teasing never stopped. He

always found something to tease me about.

He was just downright mean. He'd want ME to test the ice to see if it

was strong enough to skate, which it wasn't.

I could write a book, but wouldn't want to bring back those painful

memories. My parents weren't able to stop him.

If they tried, he'd only be worse behind their back. I learned to

deal with it and tried not to let it bother me, although

of course it did. He was my only brother and I had no sisters.

Maybe his teasing is why I found humor to cope. I'm not really sure.

I've read that kids will tease kids out of fear.

They fear the unknown and fear that it will happen to them. I don't

know how you can teach kids about RA when adults

don't even understand. We have grown people here that endure teasing

from husbands, siblings, employers, co-workers,

and total strangers. Sometimes I get very upset at the cruel world we

live in, but then I see so much kindness.

You will find lots of kindness here. I hope this kindness can take

away a little of the pain.

I with I had some magic words that would help you deal with your

siblings. How old are they?

a

On Nov 11, 2005, at 11:32 PM, roseysmilez wrote:

> i am a 16 year old girl who was recently diagnosed with RA this past

> year and it seems all the medicines i am taking don't help but the

> problem i have is that i have smaller siblings and they just don't

> seem

> to understand what i am going through and neither I or my parents

> don't

> know how to help my brothers and sister understand what i am going

> through. they call me gimpy and other things and i wanted to know if

> anyone knew anything about this kind of advice to give to me...thank

> you for it if you do.

>

>

>

>

>

>

>

>

>