Re: jra-er needs advice/kathy

[Guest guest]

hello kathy, u seem to be the writer. i dont know what you meant by seeing

what you dont want for your sons future in me but it sure doesnt feel

complimentary. i am not in a wheelchair, i walk completely on my own with 2

steel knees and 2 steel hips. i type fine now thanks to a steel shoulder.

i write about problems because i thought that was the point of this site, to

ask advice, etc. all i wanted to know was how to chill out enough for my

joints to do the same. i do like to write as well as a lot of other things,

but working isn't absolutely necessary for me. i have wanted to, even went

to college for 2 years and studied computer programming. the problem here

is medical insurance, i will lose my medicaid and no private insurance co

will carry me. i take care of our new home, john, and run all kinds of

errands and odd jobs for relatives. i do have someone to talk to, she is a

member of this list. we talk almost every night thru instant messenger. i

am a penpal to her daughter as well. i asked the list, to get more than one

opinion. i do not whine and still am thinking about what is my life that

you dont want for your son. i live almost completely independently, have 5

solid steel joints, recently bought a new home that i take care of on my own

and is one of the cleanest homes you'd ever want to step in. i handle my

mothers finances, bills, thw whole nine yards cuz she works too many hours

and cant do it herself. i dont get it, maybe i read something wrong.

brandy

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[Guest guest]

Kathy,

What do you mean not wanting to see your brandy in your son? I think it's

a blessing for her to be able to do for herself and not depend on meds like

our children are at thid time. My daughter doesn't like taking her meds and

will stop for weeks at a times because of the way it makes her feel. Instead

of discouraging , talking ugly and insulting her you should be

applauding her for her accomplishments in her life. Actually we can look at

her life and so go girl you aren't letting this jra stuff get you down, but

not you you are trying to tare down her self-esteem but I won't let you do

that to her no no one else whose enjoying their adult life with this jra

disease. You are probably your son problem by not letting him enjoy his life.

It's people like you that I have to continue to pray for and as GOD and

humble you. I don't want my child to deal with jra with meds all her life and

who are we to judge what or anyone else who decides no meds for

themselves. you are a strong young lady and don't be insulted by

others stupidity ok. Keep your head up and live and enjoy life to the

fullest. An again I say go gyrl :-)

Ywellen

[Guest guest]

I can only say that I hope when my daughter is grown up she has as much

determination and strength to beat this jra as has. To have gone

through life with jra and many surgeries, and still be a SUCCESSFUL

individual (and it doesn't take money or a career to make one successful) is

something to be VERY proud of Gives me hope that jra won't hold Kelsey

back from being a strong person!

[Guest guest]

i think its this way

your story and what you have gone through helps each on of us to know what

to do and not to do

kind of like with parents telling us not to do things cause they done it

before

or they tell us this is right

your a GREAT inspiration to this group

thanks

Robbin

[Guest guest]

well spoken even though JRA has its hills and mountains we all as a family

have to teach the child to overcome obstacles it will be hard BUT never

give up

give that determantion to them dont let nothing stop them adjust things but

never say they CANT do it they will do it at their pace and way

Robbin

BRANDY you go girl

[Guest guest]

Hi

I just went back and read the note from Kathy to you, as I could see

that it upset you. I'd like to share what I took from it, perhaps

helping you along the way. I did not see the negative that you saw.

Kathy stated what I think many of us have felt about our kids futures.

In so many of your e-mails you have spoken of the pain you have endured

and the surgeries. You've talked about the poor quality of the docs you

saw as a child, and the lack of understanding from others. Those are the

things we don't want our kids to experience. Your strength and courage

to go on, however, are things we hope our kids have in common with you.

You are to be respected for all that you continue to accomplish.

Liz

Hendricks wrote:

>

>

> hello kathy, u seem to be the writer. i dont know what you meant by seeing

> what you dont want for your sons future in me but it sure doesnt feel

> complimentary. i am not in a wheelchair, i walk completely on my own with 2

> steel knees and 2 steel hips. i type fine now thanks to a steel shoulder.

> i write about problems because i thought that was the point of this site, to

> ask advice, etc. all i wanted to know was how to chill out enough for my

> joints to do the same. i do like to write as well as a lot of other things,

> but working isn't absolutely necessary for me. i have wanted to, even went

> to college for 2 years and studied computer programming. the problem here

> is medical insurance, i will lose my medicaid and no private insurance co

> will carry me. i take care of our new home, john, and run all kinds of

> errands and odd jobs for relatives. i do have someone to talk to, she is a

> member of this list. we talk almost every night thru instant messenger. i

> am a penpal to her daughter as well. i asked the list, to get more than one

> opinion. i do not whine and still am thinking about what is my life that

> you dont want for your son. i live almost completely independently, have 5

> solid steel joints, recently bought a new home that i take care of on my own

> and is one of the cleanest homes you'd ever want to step in. i handle my

> mothers finances, bills, thw whole nine yards cuz she works too many hours

> and cant do it herself. i dont get it, maybe i read something wrong.

> brandy

> _________________________________________________________________________

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

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

In a message dated 9/11/00 4:58:30 PM Pacific Daylight Time,

sweetpea200001@... writes:

<< You are probably your son problem by not letting him enjoy his life.

It's people like you that I have to continue to pray for and as GOD and

humble you. >

I'm amazed at how someone's view on life colors what they see and read. An

optimist will look at a rain storm as beneficial for bringing moisture to

plants where a pessimist will see it as a dark dreary day. I can't respond,

nor will I, to your insenstive remarks because that will lower me to your

standards. If offense was taken then maybe you should look inward to see why

you read what I wrote so negatively. The problem isn't in my writing, only

in your interpretation. Saying this, let me say that your letter couldn't be

misinterpreted.

I won't explain myself because anyone who has followed this list knows

the hassels that has went through and I for one, am grateful that she

is one here so that I can insure that my son doesn't go through them.

Hindsight is 20/20.

kathy

[Guest guest]

Kathy, And I still stand on what I said too. We don't know what the future

holds for our JRA kids, but I do know that GOD is able to heal them and if he

doesn't I know he can. I'm glad is on this list too, but like I said

we should be building her up instead of tearing down her self esteem and

making her feel like her life has been down the hills. I wish that my

daughter was no meds like , because the meds she's on aren't doing

anything for her and I'm tired of her being make a guineapig. Again I say go

go.

Ywellen

[Guest guest]

In a message dated 9/13/00 8:59:39 PM Pacific Daylight Time,

sweetpea200001@... writes:

<< We don't know what the future

holds for our JRA kids >>

I know what the future holds for my son. A future of always holding his

head high and his face to this sun. A future spent looking forward. A

future where his mind will be his greatest asset not his physical prowess.

I'm creating a man who will stand tall and overcome his obstacles through

sheer will. Belief is a powerful tool and when combined with a strong inner

will, nothing can't be accomplished. I'm raising a man who won't blame his

illness for things in his life that aren't easy..

Someone who will instead find another way to do what he wants. A man who

knows the only things worth fighting for are things that are hard and

painful. A man so secure in his worth, that being a little short, won't hurt

his self esteem or being laughed at in a wheel chair won't dent his ego.

Nothing has prepared my son better for rough bumps in his life travels

than this illness and for that, I'm grateful. If I can keep him stable and

prevent bitterness from settling into his heart and mind, then he will be a

strong force. I love my son more than life. I'm a single mom and it's

just him and I. He's my greatest asset. I love him and somehow, we will

endure. We fight daily and I'm scared every morning that he will regress

but I can't nor will I, let that rule our lives. If I let it, he will

always be a victim and never be able to walk alone.

There's that adage that says, mountains are moved one shovel at a time

and Gandi once said about his travels something like this, " A journey of a

thousand miles starts with only one step. " My favorite saying though is by

Booker T Washington..it says, " I have learned in life that success is to be

measured not so much by the position that one has reached in life but rather

by the obstacles which he has overcome while trying to succeed. " Tally will

be a success, this I am sure of.

kathy

[Guest guest]

Kathy,

That was an awesome letter, you are very gifted with words :-) That is

exactly how I feel, Holly is a perservierer (I hope that's a word). There is

nothing she can't do, she may do it different from others but done it gets.

And she is proud of that fact. She is a very strong child. I used to wish to

be as strong as she is, but I pretty much have realized that we as parents of

these wonderful kids have become strong, we have to be. But i can't of any

other thing in the world that is more important to me than making my children

strong caring adults, that are leaders in life :-) AJ

[Guest guest]

AJ,

I absolutely agree with you. I don't think I would be as strong now had I

not had Tally and this illness. It has forced change in my otherwise

stagnant life. I look at my son and realize what a true gift he is. He

understands this and I think that the love between us is strong enough to

make me change to become accepting without bitterness and him to struggle

with pain regardless of attitudes around him. He was laughed at in school

one day by a little boy and I watched another child mimic his gait, but while

I was upset, he wasn't. Grin, I think he hates not having Christmas more

than having arthritis. Children learn how to persevere by watching the

adults. If we fall apart, then they will. If we appear confident that

things will be ok, then somehow things will get better.

The thing I hate hearing most from people is " I don't know how you do

it. " That infuriates me because I can't imagine anyone else not doing what

I'm doing. It also makes me feel as though the compliment is on me and it's

not. I dont do anything but be a good mother... Tally does all the hard

work. Life is unfair and it does throw curve balls, but no more to me than

to others. Tally goes to school with children who wear glasses or children

that are neglected or given ritalin constantly and I realize that everyone

has something not perfect about them. I do it all because I love him and

because to me, it's not difficult to manage. No other reason. I'm a hard

ass on him and force him to do things that he doesn't want to, but the world

isn't populated by people who do things they want to do or are good at... the

world is populated with people who struggle everyday in something.

I don't apologize for living or forcing my child to live. I have seen

too many people with dead eyes to pretend that life isn't about breathing but

about enjoying. Most people don't realize when the life starts seeping out

of their souls so Tally will be lucky in that he will get to chose every day

when he wakes, whether to live and enjoy life or to just shrivel up and be a

victim.

I get so long winded writing these letters. I just want tell people

that this disease isn't the end of the world. It's tough but there are worst

things in life. The key word being life. The road ahead isn't smooth but

how would you rather see the country? Would you rather go straight through

miles and miles of corn fields or would you rather take the rocky, windy path

by the ocean? The road through the corn fields is safe and secure. The road

near the ocean is full of difficulties and windy paths but ohhh, the sunsets

are so wonderful.

kathy

[Guest guest]

Kathy,

Wow!!! If we all had mom's like you!!! What a great outlook I'm printing

your e-mail for when I need a lift!!!!! :-)!!!!! Kris:-)