Re: Uncaring/Afraid friends

[Guest guest]

,

My friends and family all seem to really care, and they do ask how we are all

doing, but what gets to me is the question I hear from almost everyone: " Will

she grow out of this? " My response is always " We can only take it one day at

a time, make the most of the good days she's having, and hope for the very

best " . Sometimes it bothers me when I sense people feel sorry for Kelsey,

and/or pity her. Of course I feel bad for her, it breaks my heart that she

has to live with this disease, but I'd appreciate it much more if my friends

would view and treat her as the " normal " child she is, not focusing on the

JRA every time they are around. Sometimes it would just be nice to not have

to talk about it. Not that I try to go into denial, but when something takes

over and changes your whole life it feels good to just be like everyone else

and talk about the funny and nice things our kids do. I'm glad I have this

group, it sure is nice to have people to talk to that KNOW what you're going

through.

I'm glad Skyler is having some good days, he certainly deserves them. I hope

things continue to improve. Give him hugs from us )

[Guest guest]

I think that people don't know what to say, so they say nothing. Or else

they mistakenly assume that, once you know what the problem is and start

getting treatment, everything is fine. When my daughter was diagnosed, my

employer and co-workers were asking about her every day and seemed very

concerned. Now, same thing . . . no one ever asks.

Diane

[Guest guest]

-

That's what we're for. You can complain to us all you want (and we'll return

the favor).

Diane

[Guest guest]

My friend once said to me all you talk about is your daughter, while my

daughters Jra was active. All I did was DRs and threapy, i had to wrok second

shit etc, you all know the story. She suggested, with that I know what is

best tone I focus on something else. So I questioned myself: Was I a

whiner?? Now that my daughter, for the most part, is in remission I realize

my friend was inapropate. I convinced myself she did not understand. But

she really was not interested, Now My friend, still Is concerned that she has

rheumatic disorder. She calls me with questions and

for adivce do to my medical training. I help her. I don't even think she was

aware how much those word hurt. But I can't forget those words when I

needed people to share my life with, but I learned that people do not want to

hear your difficulties for the most part. I uaed to beg family to go to DR

appt with me, because sometimes I would leave Phila, for a 1-2 hour drive

crying. But these same family members can drive 1-2 hours to hear my

daughter sing now. Stange, huh? You are not alone with the friend situtaion.

We are here to discuus your life with you, and hopefuly help you.. I forgave

those who did not understand, and I am grateful to the few that really did

understand. I try to be a person who understands. Maybe we have to realize

that this disease and fighting it is our life right now. Good Luck SHU

[Guest guest]

My friends are starting to get used to it all. They are all very caring and

want to know how things are going, but when you stop and think about it, there

is often very little to really say. It all boils down to how the new medicine

schedule is progressing. The answer is allways " We are just waiting and

watching " .

Fortunately Skyler seems to be improving (knock on wood) and is up and around

mostly. I just hate having to tell everyone when he is doing badly. I allways

feel like I am complaining or bringing them down too.

Take care.

Uncaring/Afraid friends

,

I read your post and have to say I am going thru something similar,

but in my case it seems all of my friends just don't even ask how we

or my daugter are doing. They seem to want to ignore that there is

any problem I can only think they are scared that it can happen to

them too. It is very upsetting to me, when almost every waking moment

of my life is spent thinking and caring for my daughter and no one

even asks how it is going. How does she do with her meds, eyedrops,

Drs appts, blood work etc. I guess we are lucky that we live in this

computer age so that we have each other to talk to. Well, all that

venting felt good. Time for 's drops. Have a great day.

Bonnie

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[Guest guest]

Bonnie

i can understand how you feel on this

none of my brothers or sisters have kids so they dont understand

it scared them when i told them melissa had asthma but by the time we found

out she had JRA they seemed to just ask whats that i explained it to them

and they understand i guess but only a few will come get her and take her

with them on trips they just ask for the inhaler and make sure how she feels

to walk

if she thinks she cant make it then they will carry the wheelchair

i really have no problem with close family

but with teachers friends or others i meet their first expression is back

up

and then ask what JRA is for some reason i just say you cant catch it dont

be alarmed i explain they seem to act funny but they will learn

and when i get a call to go off i may say ok but i have to make sure melissa

will be ok that day if not i cant go or i have to take her with me

people are afraid yes it may not be uncareing its a reaction

i am funny about kids with colds being around melissa

this happened to me the other day on a trip to the grocery store

i shouldnt have done it but it was a reaction of mine

due to experience

melissa and me were in line this woman and a baby was in the line next to me

the cashier walked away from that baby and would not check the woman out

i wondered why and asked why is she scared of that baby

the baby was maybe 3 months old when i found out what the baby had i

whispered to melissa and told her to stand over at the drink machine till i

finished

this baby had chicken pox this mom had it out in the cool air and

when my kids had chicken pox i was told they had to stay inside for 7 to 10

days

DONT carry the child out i did that

but i was not afraid of the baby but was afraid of melissa catching it

again or haveing a bad flare up this JRA i just know is a auto immune

disease

anything could happen

i know this is long so i will stop

but we all have a reaction to different things

the best you can do is get the word out by handing out a pamplet

education is knowledge talk to people

JRA is not contagious BUT other things like a simple cold could cause a

problem with our kids

Robbin

[Guest guest]

hi robbin, i am with you, i panic when contagious sick people get close to

me. sometimes they are insulted, i dont mean to act like they are dirty or

anything, but i know they can make me so sick i wont be able to handle it.

i had schools that didnt care and sometimes my peers just wished i would get

out of the way so they could get by....but then i had real friends. i had

friends that carried onto and off of the bus cuz i couldnt get up and down

the stairs. my friends pushed my wheelchair back when i had to use one.

they loved me and they knew that jra was a part of me, accepted it, and

never let it get in the way. i love those friends still today. i hope all

of these kids have friends like that. brandy

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[Guest guest]

your right good friends help and understand

melissa has friends like that and they see me alot

at the school

Robbin