crying

[Guest guest]

Hi Vicky:

I know what you mean about nothing being able to stop the crying. I get like

that myself sometimes and it is mortifying. I feel so out-of-control - but

have had to come to realize that it is something I can't seem to control and

so I just tell people to ignore the tears, I can't help them anymore than I

could shivering when its cold.

Are there any pamphlets you could get from your 'local' arthritis society or

hospital on jra to give to your teachers to help educate them? There are

lots of things like that available here in Canada. I put a package together

for my daughter and each year at the start of school I give it to her

teachers to read. Most of them (she's only going into grade 2!) have been

quite interested to read up on it. None of them has ever had experience so

far with a child with arthritis, and are quite astounded at the facts. Her

teacher last year has arthritis herself, has had through most of her adult

life, and so was quite sympathetic. With the other students in the class, I

let Mickey choose how much she wants to tell them. I have offered to do a

presentation, explaining the basic facts of jra to her classmates (the

arthritis foundation here has some excellent materials geared to younger

children) but so far she doesn't want me too - she just wants to be " a

regular kid " . Not stand out or get special treatment. But she is quite

" matter-of-fact " about the details of the disease when she needs to be. It's

me that get frustrated with people not understanding the difference between

her appearing to be disease free because of the symptomatic control gained

through medications. Plus, though she is only seven, she goes to great

lengths to hide her pain and discomfort. She was a wreck one day after

school because their class had, as a group, gotten sponsors to raise money

for the Heart and Stroke Foundation by taking part in a morning long

skipping contest. They each signed up to skip, and alternately, turn the

skipping rope for others for a certain length of time. She didn't tell me

about it, because she wanted to take her turn and not (as she saw it) let

the other kids down by not skipping or turning. Her hip and her wrist both

ached from it - but she was so proud that she had done her share!

If nothing else, I think you need to educate your teachers, at least. It is

hard enough dealing with all you do without having to endure unneccessary

ignorance. And I think its important too, for them to realize that the

different medications are known to cause mood swings that are beyond your

control. Hang in there, Vicky, you really are coping with a lot and doing a

better job of it than you seem to realize!

Lynn

From: vmockingbirdh@...

Reply-

Date: Tue, 3 Jul 2001 05:26:19 EDT

Subject: Re: book signing

Thanks ,

I've been reasurred by everyone that I'm alowed to cry and I know I

shouldnt be afraid too its just when I'm in a classroom and there are all

these kids staring at me I just wish that it wouldnt happen. There is

nothing

I can do to prevent it I cant bite my lip, I cant think of happier days

nothing will stop me from bursting into tears. My Teachers think Im over the

disease " if shes in school she must be better " the amount of times Ive had

to

explain over again to a teacher that its partly steroids and then they still

ask you what the cause is. Im going away with my family in two weeks to a

weekend with other jra familys and there are going to be lots of kids my age

and I know ill be in tears the whole time its something I cant control.

[Guest guest]

Hi there

Interesting that, I never used to cry, but I did used to start shaking -

within my whole body. It was a funny feeling and completely

uncontrollable...

Ady Ogilvie

(011) 686 6323 (Telephone)

(011) 686 6666 (Fax)

083 412 0174

" I complained that I had no shoes, until I met a man who had no feet. "

> Re: book signing

>

>

> Thanks ,

> I've been reasurred by everyone that I'm alowed to cry and I know I

> shouldnt be afraid too its just when I'm in a classroom and there are all

> these kids staring at me I just wish that it wouldnt happen. There is

> nothing

> I can do to prevent it I cant bite my lip, I cant think of happier days

> nothing will stop me from bursting into tears. My Teachers think Im over

> the

> disease " if shes in school she must be better " the amount of times Ive had

> to

> explain over again to a teacher that its partly steroids and then they

> still

> ask you what the cause is. Im going away with my family in two weeks to a

> weekend with other jra familys and there are going to be lots of kids my

> age

> and I know ill be in tears the whole time its something I cant control.

>

>

>

[Guest guest]

Lynn....there are some teachers who read the material...but i have dealt with

school officials who stick it in their files and ignore it...that is why i

think that the world itself needs to know more about children who live with

this disease....it is sad..because i seen a thing on tv about juvenile

diabetes but never anything on jra...sorry just mumbling...but adults who are

in the classrooms need to be more aware of this before a student enters the

classroom...i think they ought to have to take a course on different

diseases..sounds silly but makes sense to me..karen

[Guest guest]

Thanks Lynn,

My mum made sure that when I was starting to go back into school that

everyone knew but some people seem to have forgotten or were away. Its nice

to hear that other people seem healthy yet still live with the disease. Being

systemic I have no outside symptons and the stretch marks I cover up for

school. I often feel quite guilty when reading overs turmoil because I seem

to have been given the less difficult type of the disease. I 've had no

surgery apart from a central line I needed and I have stopped having the

aches. People sometimes say I blame the disease for everything which I did in

the beginning because it was a joke. But I dont know what to do ,if I say Im

anxious I can read up on the side effects and its says anxiety in the list

but then I mention it to someone and they say no no thats nothing to do with

the medicine. But if I say im tired theyll say of course thats the disease.

So I dont really know how bad my disease is as I blame the medicines and

enviromental issues for the way I feel . Does that make sense?

[Guest guest]

Hi ,

You're right. I'm not sure what the rules are but this does sound like a

good idea. I always assumed that a teacher of children who had special

health needs would take it upon themselves to learn about the condition

the children they're working with have. I've always made a point of

meeting with 's new teachers each year, to inform and help educate

them about JRA. A special class on just this sort of thing, highlighting

a variety of health issues, might be very helpful.

Take care,

Georgina

srargem35@... wrote:

>

> " ...but adults who are

> in the classrooms need to be more aware of this before a student enters the

> classroom...i think they ought to have to take a course on different

> diseases..sounds silly but makes sense to me..karen

[Guest guest]

Hi Georgina...I talked to Tabithas nurse yesterday and she gave me a

suggestion on something I could do to make people in my area more aware of

JRA. She said that I could talk to the school and when it starts back, see if

they would let me set up a booth or a table on parent/teacher night. She said

for me to contact my local Arthritis foundation and they would supply

information that I would need. I told her about this group and plus

jraworld..she knows alot of kids who deal with jra...I also told her about

the idea that we had about talk shows..she said that the only way we could

probably get them to do something on jra is to bug them with letters and

phone calls. She knew a teen who wrote Rosy O'Donnel and was turned

down..this girl was a cheerleader and plus lives with jra..isn't it sad that

something like that isn't terrific enough to put on television..but let's

lose " who wants to be a millionaire " and we can be on television and get

vacations..I am sorry to go on about how the world doesn't know about JRA or

doesn't think it is serious enough to know about but when I see what Tabitha

and read what the children go through on here...it upsets me...Well I

definitely know one thing for sure: WE ALL HAVE TERRIFIC AND BRAVE CHILDREN!

But I decided I won't stop until someone does a story on this

disease........................

[Guest guest]

In a message dated 07/03/2001 5:53:45 PM Pacific Daylight Time,

srargem35@... writes:

> Lynn....there are some teachers who read the material...but i have dealt

> with

>

When was diagnosed, we demanded a meeting of ALL her teachers. That way

we knew they all knew what her problem was.

[Guest guest]

Hi,

I could definitely relate to much of your message. has had two

teachers, so far, who also had rheumatoid arthritis. I never asked but I

did wonder if maybe they decided those teachers might be the best ones

for him, as they could better understand what it might be like for him.

Both were wonderful, in many ways.

didn't want me to give a presentation at school, either. His

teachers have read over the information I give them and talked to the

class about arthritis, just to give the children a basic general idea

about it. In the younger grades I used to bring in two really good

booklets we got several years ago from our doctors, coloring books for

youngsters about JRA. The teacher stood up and presented them, read the

few sentences on each page. And then answered any questions, with help

from Josh. He's pretty good about answering people's questions but he

doesn't yet want to be the one to initiate the dialogue. His sister will

though, at any opportunity she gets. She's more outspoken than he is.

Here, we have two annual events, the Fun Run and a Jump rope for Heart

event. There were times when Josh couldn't participate and times when

maybe he shouldn't have, but did anyway. One is to earn money for the

school. One, for the Heart Association. He felt really proud to be able

to participate, to get sponsors and make a big contribution. Even if he

did hurt more the next day. Once, he had a flare-up that seemed to

co-incide with the Fun Run. He was down for more than a few days. Too

much physical activity has always seemed to really affect him. But kids

will be kids and they'll learn, eventually, what to be more careful

about. In time.

Take care,

Georgina

Lynn Young wrote:

>

> Hi Vicky:

> I know what you mean about nothing being able to stop the crying. I get like

> that myself sometimes and it is mortifying. I feel so out-of-control - but

> have had to come to realize that it is something I can't seem to control and

> so I just tell people to ignore the tears, I can't help them anymore than I

> could shivering when its cold.

> Are there any pamphlets you could get from your 'local' arthritis society or

> hospital on jra to give to your teachers to help educate them? There are

> lots of things like that available here in Canada. I put a package together

> for my daughter and each year at the start of school I give it to her

> teachers to read. Most of them (she's only going into grade 2!) have been

> quite interested to read up on it. None of them has ever had experience so

> far with a child with arthritis, and are quite astounded at the facts. Her

> teacher last year has arthritis herself, has had through most of her adult

> life, and so was quite sympathetic. With the other students in the class, I

> let Mickey choose how much she wants to tell them. I have offered to do a

> presentation, explaining the basic facts of jra to her classmates (the

> arthritis foundation here has some excellent materials geared to younger

> children) but so far she doesn't want me too - she just wants to be " a

> regular kid " . Not stand out or get special treatment. But she is quite

> " matter-of-fact " about the details of the disease when she needs to be. It's

> me that get frustrated with people not understanding the difference between

> her appearing to be disease free because of the symptomatic control gained

> through medications. Plus, though she is only seven, she goes to great

> lengths to hide her pain and discomfort. She was a wreck one day after

> school because their class had, as a group, gotten sponsors to raise money

> for the Heart and Stroke Foundation by taking part in a morning long

> skipping contest. They each signed up to skip, and alternately, turn the

> skipping rope for others for a certain length of time. She didn't tell me

> about it, because she wanted to take her turn and not (as she saw it) let

> the other kids down by not skipping or turning. Her hip and her wrist both

> ached from it - but she was so proud that she had done her share!

>

> If nothing else, I think you need to educate your teachers, at least. It is

> hard enough dealing with all you do without having to endure unneccessary

> ignorance. And I think its important too, for them to realize that the

> different medications are known to cause mood swings that are beyond your

> control. Hang in there, Vicky, you really are coping with a lot and doing a

> better job of it than you seem to realize!

>

> Lynn

[Guest guest]

> Ardeith writes: Honey, crying won't help, and getting emotionally upset

> will just make matters worse.......and make you hurt more. You've got to

> try to stay cool... stay calm, no matter how much it hurts. Yes, I've been

> there too....so I'm not telling you to do something impossible.

I don't know, I cried a lot at the beginning, too (I've only been

diagnosed 3 months or so). Partly from the depression and the lifestyle

change, partly from the pain. I still do, although not as frequently. I

think it's a healthy part of the grieving process, although

unfortunately it doesn't take your pain away.

Since you're in such agony, I'd really suggest talking to your doc

soon and trying to get something to help you thru till you know

what's going on...

Good luck,