Re: Tempered Behaviour

[Guest guest]

Hi ,

That was a really nice note I just wanted to take a moment to let you

know that I think all of us here understand that sometimes we need to

vent. Whether it's the pain and frustration of living with arthritis or

the pain and frustration of seeing someone we love affected by

arthritis, sometimes it gets to us. That's perfectly understandable.

There will be good days and bad. Good moods and bad. We've got a great

group of people gathered together here. This is something that is near

and dear to hearts and sometimes we're bound to get emotional. During

our time together I've laughed and I've cried, both, while reading

messages here. I enjoy your sense of humour and your willingness to talk

things out. I'm glad you're here

Take Care,

Georgina

dam755@... wrote:

>

> I just want to say real quickly, if at any time,

> I write some comment that seem to be a bit! Well

> I want to apologize. I do get a bit carried away,

> but it is a subject that brings out the fire in me.

> I know doctors are only human and the practice of medicine

> is a, trial and error science. So we have to bear with it.

> and endure until the find, god someday, a cure!

> Again, forgive my bad temper, it's the Evil Demon in me, JRA, that

> makes me do it, sometimes!

>

> P.S. If anyone wants to personallychew it out, you can do so at

> sitgimps@... or dam755@...

[Guest guest]

,

As a parent of a child with jra, my emotions have and still at times do run

the gamut from fear, anger, frustration all the way to pride. I watch my

child fight her way through what comes so easily to other children. I just

had to get her tylenol so she could make it through a summer night game with

the neighborhood kids. That's a heartbreaker. At the other end I have seen

her keep so much pain inside her to protect the innocence of other children.

While I would give anything to take this away from her, my faith in God has

grown so much stronger. I am filled with awe that my husband and I were

chosen to parent a child with a chronic illness. I know that might sound

silly, but the wonderful gifts Abbie has given to us are incredible. Watching

her fight through pain is incredibly inspiring. I have learned a lot. I have

learned that no matter what my husband and I have done to insulate and

protect our children, money doesn't and can't buy health. It evens out the

playing board. We thought we had it all figured out. That's the frustration

part. I guess that we all have hopes and plans for our children even though

we try not to influence them. Having to adjust our visions is painful, but it

is a learning experience. The lessons that I have learned in the past year

and a half could never have been learned any other way. I try not to have too

much expectation of the future. Even though Abbies illness is not so severe

it is still not under control. I hesitate to hope that she will be one of the

few systemic kids that will completely recover. So we greatly appreciate each

victory and accept philosophically the setbacks. But we are always

optimistic, because we can always think of someone who needs our prayers. I

guess I'm kind of rambling, but like you I need to vent sometimes.

For me it is kind of frightening to hear about the grownup side of jra. I

can't get past tomorrow, or next week. I'm not even sure about high school.

But I guess it will come whether I'm ready for it or not. keep your

optimism and with it keep showing all of us that it can be good.

Take care,

Christy

[Guest guest]

Christy,

Hi, you've said exactly what I'm feeling. My son Chase is 8 and newly

diagnosed with Systemic JRA at the end of May. It took 3 months to figure

this out. After much pain, crying and frustration for all of us, he seems to

be responding to the Prednisone and Methatrexate. I'm SO overwhelmed by all

of this that I don't know where to begin, but I thank you for your comforting

words.

Barb and Chase in PA

[Guest guest]

Hi Barb,

Welcome to the group. My son Josh has systemic JRA, too. Since he was 6.

I know what you mean. Seeing our little ones having such a struggle, and

being in pain, can be frightening for parents. At the age of six, it can

be really hard for a child to have to all of a sudden cope with this new

burden. When Josh got sick, it was around the same time that he had just

gained some new skills. He was riding a two wheeler, getting good

coordination and speed with his new roller blades, happily running

around with his little friends climbing trees and exploring the great

outdoors. Mastering his body and pushing it to it's limits.

And then all of a sudden, all of these new skills he had just recently

gained, that he was so happy and proud of, got pushed aside. He couldn't

lift or bend his arms to dress himself or brush his teeth. It was too

painful to walk, never mind to run and jump and play like he had been

just days before. His appetite decreased and he started losing weight.

His boundless energy disappeared. He became a completely different

child. Trying to imagine what that must have been like for him broke my

heart. And at night, when he was tucked in and asleep in his bed, I

cried and cried.

After finding two very wonderful, knowledgeable, and concerned

rheumatologists, after lots of trial and error, after trying different

doses and combinations of meds, we started to see improvement. Major

improvement, in the beginning. And I thought, well ... it's not so bad.

He's getting better already I wasn't ready yet to acknowledge that my

previously healthy son might have to deal with these symptoms for an

extended period of time. Setbacks happen. Each time we tried to lower

the doses to safer levels Josh would have more arthritis activity. We'd

have another flare to deal with and I'd wonder again if this might ever

end. It's a very difficult balancing act and the immediate results are

not always what we're hoping for. There are lots of ups and downs along

the way ... until you reach a good balance. Even then, unexpected flares

can be extremely discouraging. But it should be easier soon. It does get

easier over time.

All the best, to you and Chase. I'm so glad you found us. If you have

any questions or concerns, there's lots of people here who have gone

through similar experiences and they're really good at lending a helping

hand.

Take care,

Georgina

owits@... wrote:

>

> Christy,

>

> Hi, you've said exactly what I'm feeling. My son Chase is 8 and newly

> diagnosed with Systemic JRA at the end of May. It took 3 months to figure

> this out. After much pain, crying and frustration for all of us, he seems to

> be responding to the Prednisone and Methatrexate. I'm SO overwhelmed by all

> of this that I don't know where to begin, but I thank you for your comforting

> words.

>

> Barb and Chase in PA

[Guest guest]

Barb,

I noticed you are in PA. We moved from there 2 1/2 yrs ago. Where are you

and where do you take Chase?

Hang in there. I think the first 6-9 months are the worst in terms of

adjustment.

Christy

[Guest guest]

Hello Barb, mother of Chase 8 , yes its a tough road with lots of bumps

along the way. But you and Chase, will get through it a little worn and

tattered at times.

Don't be dishearten, because they have come a LONG WAY in the treatment

of jra, with all these new meds today they can combat this much more

efficiently.

And with any sick child, (men included) just bear with those mood swings,

unfortunately they'll show up, much more frequently.

This group is the right place to be writing to, they can offer you, A LOT

of good information and insight of the day to day riggers, of living with

a jra child.

Patiences, Understanding , Encouragement and Support, those are four of

the things you'll need.

And of course, an abundance of LOVE. for these Angels with, jra!

Now that I'm done babbling, prayers and HUGS to you and Chase!

33 yrs. in the War against jra.

[Guest guest]

Hi Christy,

We live just outside Reading (where all the outlets are). Where in PA did you

live? We see a wonderful pediatric rheumatologist in Hershery. Thought about

a second opinion from someone at Children's Hospital of Philadelphia but,

we're very pleased with Dr. Groh at Hershey.

Barb

[Guest guest]

CHRISTY..BELIEVE ME YOUR CHILDS STRENGTH AND ATTITUDE THAT SHE HAS BEEN GIVEN

AS A CHILD, WILL CARRY HER THROUGH THE REST OF HER LIFE...I ALSO GOT JEALOUS

WHEN TABITHA WAS LITTLE WHEN I SEEN MY FRIENDS CHILDREN AND OTHER KIDS LIVING

LIKE EVERYTHING WAS EASY, WHEN MY TABITHA HAD TO STRUGGLE JUST TO GET UP A

STEP. NOW IN HIGH SCHOOL, SHE HAS TO STRUGGLE MORE AND TO DEAL WITH KIDS WHO

ARE MEAN...BUT TABITHA IS SO POSITIVE THAT IT DOESN'T BOTHER HER...SOMETIMES

SHE BREAKS BECAUSE SHE DON'T GET ASKED BY HER FRIENDS TO GO AND DO THINGS

WITH THEM AND SHE CRIES..I NEVER KNOW WHAT TO SAY TO HER...HER FRIENDS GO ICE

SKATING ON SUNDAYS AND TABITHA CAN'T ICE SKATE BECAUSE SHE MIGHT FALL.

TABITHA WON'T DO SOMETHING IF SHE KNOWS IT COULD PUT HER IN DANGER...I GUESS

THAT IS GOOD BUT IN A WAY THAT CAN BE A BAD THING ALSO...AS A PARENT I JUST

WANT TO SCREAM AT TIMES BUT THEN I KNOW TABITHA ISN'T SCREAMING SO WHY SHOULD

I....

KAREN

[Guest guest]

,

Right at the beginning of our journey, we were told by a doctor that it would

be psychologically much more difficult for us than for Abbie. I have come to

understand what he meant.

Christy

[Guest guest]

Christy,

That was a very beautiful message. I think many of us can relate well to

the feelings you expressed.

Thanks, Georgina

gazelle34@... wrote:

>

> ,

>

> As a parent of a child with jra, my emotions have and still at times do run

> the gamut from fear, anger, frustration all the way to pride. I watch my

> child fight her way through what comes so easily to other children. I just

> had to get her tylenol so she could make it through a summer night game with

> the neighborhood kids. That's a heartbreaker. At the other end I have seen

> her keep so much pain inside her to protect the innocence of other children.

> While I would give anything to take this away from her, my faith in God has

> grown so much stronger. I am filled with awe that my husband and I were

> chosen to parent a child with a chronic illness. I know that might sound

> silly, but the wonderful gifts Abbie has given to us are incredible. Watching

> her fight through pain is incredibly inspiring. I have learned a lot. I have

> learned that no matter what my husband and I have done to insulate and

> protect our children, money doesn't and can't buy health. It evens out the

> playing board. We thought we had it all figured out. That's the frustration

> part. I guess that we all have hopes and plans for our children even though

> we try not to influence them. Having to adjust our visions is painful, but it

> is a learning experience. The lessons that I have learned in the past year

> and a half could never have been learned any other way. I try not to have too

> much expectation of the future. Even though Abbies illness is not so severe

> it is still not under control. I hesitate to hope that she will be one of the

> few systemic kids that will completely recover. So we greatly appreciate each

> victory and accept philosophically the setbacks. But we are always

> optimistic, because we can always think of someone who needs our prayers. I

> guess I'm kind of rambling, but like you I need to vent sometimes.

>

> For me it is kind of frightening to hear about the grownup side of jra. I

> can't get past tomorrow, or next week. I'm not even sure about high school.

> But I guess it will come whether I'm ready for it or not. keep your

> optimism and with it keep showing all of us that it can be good.

>

> Take care,

>

> Christy

[Guest guest]

Hi Christy,

I think this advice was very much on-target. Our children are, for the

most part, amazingly strong and resilient. I remind Josh sometimes that

he doesn't have to try to act like nothing's hurting him, if it is, just

to spare my feelings. He assures me that he won't do that, that he'll

let me know. And I think he will.

Aloha,

Georgina

gazelle34@... wrote:

>

> ,

>

> Right at the beginning of our journey, we were told by a doctor that it would

> be psychologically much more difficult for us than for Abbie. I have come to

> understand what he meant.

>

> Christy