Got the Guilts again

June 5, 2006

Jo and everyone here,

I feel so deeply for all that you are going through. Thank God, 's

symptoms are nowhere near as advanced as what anyone else has described, and the

fact that they caught onto it at I guess what are the " beginning stages " . I

read about the meds your children are on and sit here and wonder, " could that

eventually be my child? " (Right now is only taking prescription

strength Motrin every 6 hrs), I read about the pain that you describe from your

children's point of view and through your own eyes, and again, wonder if

is going to end up that way too.

And I beat myself up over it with every post I read. Because I carry the

genetic marker that pre-disposed her to the Anklosing Spondylitis. It took

almost a week for my husband to convince me that I didn't purposely do this to

her, after her diagnoses.

I remember breaking down and screaming at him about it's was my fault that

she could possibly hurt and indure pain for everyday of the rest of her life?

I remember blaming my Ob/Gyn for not having a test to alert parents-to-be of

things like this, for not running a simple blood test, etc. How it was their

fault because this could of been monitored from birth and so on and so on.

I know how you feel, believe me I do. I know what it's like to have your 3

other children look at you and say, " oh, you're taking out again

today? " and trying to explain to them that they were not " fun trips " and I

didn't

enjoy them and neither did .

I know what it's like to become an obsessive worry-wart and hover over your

" hurt/sick " child and make them feel like they are the " odd one " because

you're too busy being afraid of all the things that you've read about and heard

instead of taking everyday at face value.

Sorry for rambling...

Big huggs to all the parents out there!

))

June 5, 2006

Just have to chime in here as an adult " survivor " of this " awful " disease.

JRA, can be and often is an awful disease - pain, meds, surgery, not being

able to be " NORMAL " etc

BUT JRA (and all arthritis forms) do some good things - YES I said good

things. I am 36 and have had JRA since I was 3 - back during the " old "

treatments.

I DO NOT kow what life is like without JRA.

BUT JRA has

1. caused me to enjoy every pain free day

2. Helped me to try things that I otherwise might not have or if I'd been

normal taken them for granted.

3. Helped me to be a more caring and compassionate person towards all people

- normal or not

4.Because of my JRA, I waited 11 yrs after we got married to have kids - had

we have not waited I would NOT have my darling daughter Destiny and we would

NOT have been ready to have kids earlier in our marriage

5. JRA has helped me to know there are lots of people in a lot worse shape

than me, and believe me I am one of the " worst " case scenarios of JRA

6. JRA helps me put things in priority - even though I do tend to over-do

7. JRA has led me to this group of wonderful caring people who live with

this disease themselves or watch a child or other family member deal with it.

As a child, I was not outspoken, but I wish I could've told people these

things:

1. I may not be normal - but I am the best ME I can be

2. I may not be able to do things like other kids - but I want to try and do

what I can - just help me not to do something overly stupid and hurt myself

3. Give me hope, encouragement, a swift kick in the butt when I need it,

push me when I need it, but give me LOVE most of all.

I had brothers who were 13 and 15 yrs older than me - and YES they still felt

jealous of all the attention I got.

I had parents who did the very best they could do with what they had to do

with - that is ALL any kid with this disease can ask. NO parents are perfect,

even if you have " normal " kids. Be the best YOU can be and I promise - your

kids will grow up, have a wonderful life, and be outstanding citizens - even

with this disease.

The old saying " what don't kill us makes us stronger " really does apply to

kids/YA/adults with RA/parents of kids with RA - we are some of the strongest

people I know.

Sorry to ramble, just had these things on my heart. I have a 5 yr old who is

'normal " and I feel guilty as a parnet for the things she has to do to help

Mommy - but I know it will help her to be a more caring/considerate person in

the long run. I regret I can't teach her to swim, or play Tball with her - but

I CAN read to her, play dress-up with her, do crafts, and spend time with her

and most of all Love her - so I do the best I can do.

love, prayers, and blessings

(age 36 - poly since age 3)

June 5, 2006

Kathy, I am so glad it helped.

Beth, not sure if I can help here. I don't remember being depressed very

often at age 9 - like I said I have " always " had this disease so I just kinda

took it for granted so to speak. If any advice at all - can Hannah express her

feeling to you verbally? Maybe?????/just letting her talk might help. I do

scrapbooking - and that really helps me whn I am down - maybe some type of

scrapbook project that Hannah could do - pics of her doing things she loves?????

My favorite quote:

If God leads you to it...He WILL lead you through it.

God made us " this way " for a reason - although I really don't know what that

reason is - just hold on to your FAITH and it will all work out.

The site www.butyoudon't look sick.com has the spoon theory and it might

help Hannah explain life to friends - wish I'd had the " spoon theory " when I

was younger LOL.

love, prayers, and blessings

(age 36 - poly since age 3)

June 5, 2006

,

Girl Date lolol. Ok it's time for that. and I try this as we can.

BUT every year its always a date. and I both love Country music. So

each year theres a Country Fest here for 2 days. We go and leave everything

at home. We go together and have so much fun lolol. This year was funnierrrrr.

Rascal Flatts wasn't there ( 's Favorite group) but we went anyway.

Montgomery Gentry was there and Pat Green and Aldean. said oh ma

let's just go home. lolol. I looked at her and said no way I came here to

have fun myself. lololol. She had no choice this time though. We ate and the

music was getting good. lolol. I told her to watch the people. ohhhhhhhhhhhhh

she did and there was the fun beginning. lolol They had started dancing. I said

look those 2 look like they are doing the grass hopper. died

laughing. She said Ma they are doing the nasty dance lolol She cracked me

up. was having fun now. Her mouth dropped open when this guy asked me

to dance lolol. I declined the offer and said I am here with my daughter.

and I got up and started dancing. Then the guys really came up and

started dancing. moved towards me and we ignored the guys. lolol. We

went

together and wanted to have fun together. Mom and daughter. lolol.

said can you believe those guys. I said well we know what we are doing. The

this

young guy came up and said I love you to me. I said ok and waved him bye

bye. and I was cracking up. Another young guy came up and said can we

dance. I said I have a dance partner thank you. said seeee what I read

was true. Younger guys go for the older women. lololol. I said now wait a

minute Are you calling me a old woman girl lolol. She said no but they don't

know how old you are and I said right and we will keep it that way. Another guy

came up and I said I am dancing with my Sister. was on the grass

laughing so hard. She said Ma now that was a lie. I said no it wasn't it was a

fibby and I got you this time. Mongomery Gentry was the main act and

was hooting and rooting them. We got to dancing in line and we did good.

kicked her shoes off and boy she was getting down. I stopped and

watched

her she was doing great. The fun didn't stop when the concert was over though.

We had fun walking to the bus stop. lololol. said ok ma there's those

guys again. These guys wanted to give us a lift. I said ok lets act

like we do not hear them. lolol. she said ok. It worked. We got in about 1am.

Soon as we got in goes and tells my daughter in law that some guys

tried to dance with ma. lololol. Dang if it didn't go through the Family

grapevine and my hubby heard about it. lolololol.

. and ALL Moms.

Get the girls Day out going. You will have a Ball. It's a once a year thing

for and Me.

We do go out during the week but this once a year is every year and we get

to enjoy it. Now even though was having a ball and dancing. on

the bus said Ma You know I am hurting so bad right now. I said Yes I know

baby. said no matter what I really enjoyed myself. Even though I know

tomorrow I will be hurting a lot more. I gave her a big hug and told her I

loved her. I know that this once a year thing for us We leave everything at

home

when we leave to head out there. No matter what we do not think about

anything but having fun. That's what makes it so special. I see my baby having

fun.

I spend this time with her.

Robbin

June 5, 2006

G'day,

I had a bad night.

Our boy Bayly was cranky as all hell and ended up with the whole

family cranky as a result (he didn't want a bath, then didn't want to

get out, didn't want those pyjamas, etc). Then Miss Violet would not

sleep (she's convinced there are Crocodiles in her bed each night).

Then when finally everyone in the house was softly snoring (including

the dog outside my bedroom window), I had a revelation of sorts. And

started to cry. Just like that.

You know how we're 'advised' to make sure that we show enough

attention to the siblings of the kids with JIA? To ensure that they

don't feel the " sick " one is getting all mum and dad's attention?

Well I have been making a concerted effort to spend 'quality time'

just with 2 y.o. Violet ('cause I felt guilty about her being dragged

along to appointments all the time), while also being the best

Stepmother I can be to (toughest job in the world that). But I

think the pendulum has swung too far. Last night I was feeling that

I only seem to spend time alone with Bayly, at the doctors, or

specialists, or hydro, physio, OT, or some damn thing to do with his

Arthritis!

And I feel real bad.

I do heaps with the two little ones together- drawing, craft, games,

outings. And try to have 'family days' with all of us (which a 13

year old boy like thinks are dumb). But when was the last time

I just sat down and cuddled Bayly, and not because he was upset after

some procedure or needle pricking? I tried for ten years to conceive

the little fella, was overjoyed at his arrival, devastated by his

diagnosis, and distraught that it's not going away. He's my angel

and I am failing him.

Hmmmm....

Said it before: God I hate this damn disease!

Jo

Bayly, 4, Extended Oligo

June 5, 2006

Jo, you are such a good mama. Good grief all the talk about crafts

games and outings had me thinking that I should be doing

more...Isn't that the way of it for us moms...always feeling guilt

over not doing enough.

I have been promising Aundrea a girl date for I don't know how

long...Your post prompted me to look at that calender and get one

scheduled! :-)

Enjoy your little miracle boy today and don't be so hard on yourself!

Blessings,

(Aundrea 10 systemic jra)

-- In , " Jo & Grant " <joking70@...> wrote:

>

> G'day,

>

> I had a bad night.

>

> Our boy Bayly was cranky as all hell and ended up with the whole

> family cranky as a result (he didn't want a bath, then didn't want

to

> get out, didn't want those pyjamas, etc). Then Miss Violet would

not

> sleep (she's convinced there are Crocodiles in her bed each

night).

>

> Then when finally everyone in the house was softly snoring

(including

> the dog outside my bedroom window), I had a revelation of sorts.

And

> started to cry. Just like that.

>

> You know how we're 'advised' to make sure that we show enough

> attention to the siblings of the kids with JIA? To ensure that

they

> don't feel the " sick " one is getting all mum and dad's attention?

> Well I have been making a concerted effort to spend 'quality time'

> just with 2 y.o. Violet ('cause I felt guilty about her being

dragged

> along to appointments all the time), while also being the best

> Stepmother I can be to (toughest job in the world that).

But I

> think the pendulum has swung too far. Last night I was feeling

that

> I only seem to spend time alone with Bayly, at the doctors, or

> specialists, or hydro, physio, OT, or some damn thing to do with

his

> Arthritis!

>

> And I feel real bad.

>

> I do heaps with the two little ones together- drawing, craft,

games,

> outings. And try to have 'family days' with all of us (which a 13

> year old boy like thinks are dumb). But when was the last

time

> I just sat down and cuddled Bayly, and not because he was upset

after

> some procedure or needle pricking? I tried for ten years to

conceive

> the little fella, was overjoyed at his arrival, devastated by his

> diagnosis, and distraught that it's not going away. He's my angel

> and I am failing him.

>

> Hmmmm....

>

> Said it before: God I hate this damn disease!

>

> Jo

> Bayly, 4, Extended Oligo

>

June 5, 2006

*HUGS* Jo,

I can't tell you how many times I've cried at night or felt guilty over how I

acted with my son. I think it's just par for the course. Hopefully things will

get better and you'll be able to do the things you want to do.

again *HUGS*

Carey and Ben (5)

__________________________________________________

June 5, 2006

That was beautiful...thank you!

My daughter (19 mos.) was diagnosed with poly JRA a little over a month ago, and

these are exactly the kind of things that a parent needs to know. I am not by

nature a negative person, but lately there has been a lot of negative focus in

our household. I don't want to continue the trend...it's not good for any of

us. Thank you again! I'm going to share this with my family. I don't post

very often as my time is so limited, but couldn't let this one go without adding

my comments.

Kathy

Re: Got the Guilts again

Just have to chime in here as an adult " survivor " of this " awful " disease.

JRA, can be and often is an awful disease - pain, meds, surgery, not being

able to be " NORMAL " etc

BUT JRA (and all arthritis forms) do some good things - YES I said good

things. I am 36 and have had JRA since I was 3 - back during the " old "

treatments.

I DO NOT kow what life is like without JRA.

BUT JRA has

1. caused me to enjoy every pain free day

2. Helped me to try things that I otherwise might not have or if I'd been

normal taken them for granted.

3. Helped me to be a more caring and compassionate person towards all people

- normal or not

4.Because of my JRA, I waited 11 yrs after we got married to have kids - had

we have not waited I would NOT have my darling daughter Destiny and we would

NOT have been ready to have kids earlier in our marriage

5. JRA has helped me to know there are lots of people in a lot worse shape

than me, and believe me I am one of the " worst " case scenarios of JRA

6. JRA helps me put things in priority - even though I do tend to over-do

7. JRA has led me to this group of wonderful caring people who live with

this disease themselves or watch a child or other family member deal with it.

As a child, I was not outspoken, but I wish I could've told people these

things:

1. I may not be normal - but I am the best ME I can be

2. I may not be able to do things like other kids - but I want to try and do

what I can - just help me not to do something overly stupid and hurt myself

3. Give me hope, encouragement, a swift kick in the butt when I need it,

push me when I need it, but give me LOVE most of all.

I had brothers who were 13 and 15 yrs older than me - and YES they still felt

jealous of all the attention I got.

I had parents who did the very best they could do with what they had to do

with - that is ALL any kid with this disease can ask. NO parents are perfect,

even if you have " normal " kids. Be the best YOU can be and I promise - your

kids will grow up, have a wonderful life, and be outstanding citizens - even

with this disease.

The old saying " what don't kill us makes us stronger " really does apply to

kids/YA/adults with RA/parents of kids with RA - we are some of the strongest

people I know.

Sorry to ramble, just had these things on my heart. I have a 5 yr old who is

'normal " and I feel guilty as a parnet for the things she has to do to help

Mommy - but I know it will help her to be a more caring/considerate person in

the long run. I regret I can't teach her to swim, or play Tball with her - but

I CAN read to her, play dress-up with her, do crafts, and spend time with her

and most of all Love her - so I do the best I can do.

love, prayers, and blessings

(age 36 - poly since age 3)

June 5, 2006

Jo,

HUGS!!!

Cut yourself some slack, girlfriend. You are doing an awesome job as a mama

to BOTH Bayly and Violet. I am sure you are spending more quaility time with

your kids than a lot of parents in this world do.

Stay positive, I have good feelings that the MTX injections are really going

to help Mr Bayly, big time!!!

Please remember to have some JO time too..... you need to take care of

yourself, its so important and will help you deal with everything thats

going on in your life.

I am finally starting to this for myself, working full time, running a

house, dealing with the needs of 5 kids left me frazzled. So im trying to

make sure i take care of myself.

hang in there Jo, we are here anytime you need to " let loose " a little. ))

hugs Helen and (8systemic)

Hugs..Helen

DH Dan

(22)(16)(13)Zachary(11)(8)

(6)

----Original Message Follows----

From: " Jo & Grant " <joking70@...>

Reply-

Subject: Got the Guilts again

Date: Mon, 05 Jun 2006 21:58:54 -0000