Re: feel like I'm failing (looong)

[Guest guest]

{{{{{{{{{{{{{{{{{{{{{{{{{{{{Jo}}}}}}}}}}}}}}}}}}}}} Nothing i am going

to say right now will be enough to ease your mind................its so hard

sometimes to keep yourself glued together when life seems to be just getting

tougher and tougher to handle..........just know that i have been there,

through much of the same situations and sobbed many times............you are in

our thoughts and prayers darlin.............just keep on doing what your doing,

your doing a great job!!!!!

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

Just know that many people are praying for you, your son and his little

sister.

Sometimes it seems easy for someone else to say, just trust God and He will

get you though this. I do not say that with ease, I say that with heart felt

conviction. And I also know that trusting God is not real easy especially when

you are watching your child suffer. When you trust Him it will not make

things easy, it will not take all the pain away, and yes you may still suffer.

But, trusting in Him can give you a peace that others can not understand. When

going through the tough time, you may still seem frazzled but if you have

some even a small bit of that inner peace, that is what trusting God is all

about.

Keep fighting for your son and yourself.

[Guest guest]

Jo when I read your email it was if you were writing from within my heart.

The struggles can be so unbearable - we see our little ones suffering and the

world continues to go on around us as if nothing were wrong. If seeing our

child in pain isn't enough then we have to worry about medical cost and side

effects from the medical treatments. We had to put Hunter back on

prednisone this weekend due to her developing possible asthma. She is so pale

with

dark circles under her eyes - the really sad part is that she is old enough now

to understand what it means to be sick. She cried last night in her bed

that " she hates this arthritis and she wishes she could be like her friends " .

All I could do was hold her and wipe away her tears. I couldn't sleep last

night for fear she was going to wake up unable to breath and have to give her a

breathing treatment. But Jo - she made it through the night and this AM she

has yet to need her inhaler - All we have is hope and faith when it comes

down to it. You hold on to your hope and your faith - Sandi Ken and Hunter

(Systemic 7)

[Guest guest]

Jo! first of all I want you to place your left hand on your right shoulder,

and your right hand on your left shoulder. Give yourself a well deserved hug!

Although we cannot reach through this computer please know we send our hugs,

our ears, and our shoulders. Although mine are somewhat small they will be

here for you and your special lil man. This disease is indeed a monster and

there is not a day I dont hate it. Whether it is the children on this list and

across our country or myself, within the confines of my own home, I hate what

this disease continues to do to the kids and the parents who try so hard to

hold themselves together. Jo you are to be commended for your dedication,

concern and love you express. To simply say hang tight and hang tough sometimes

is not enough. To say have faith and say a prayer sometimes aint enough. To

have friends and others who do understand sometimes isnt enough. But hun know

we are all with you in this fight, we know your fears, your frustrations, the

anger, the sadness and we are with you in spirit! I fear everyday this

disease will take me from my children, my worst fear! I am their momma, noone

else

could ever be to them what I am. Who would listen to the teen angst,

homeschool Matt, worry about s health and argue with his school over his

rights, and lets not forget be the daily taxi driver and as you know the list

goes

on and on and on.... I have to have faith, remain positive even in negative

moments. I have to hang tight and hang tough on more days than I dont but my

friend you will survive these trials and please never forget I along with the

others are here for you!!!

smile k!!!!

Donna

[Guest guest]

Donna, are you still having trouble with 's school? I had to really

fight to get my daughter's rights met last year. Had to call a parent advocate,

and the US Dept of Justice and US Dept of Education. Based on what I was told

by all of those people, I then had to threaten to file due process and at that

point I got what she needed. Good luck and let me know if I can give you any

information from our experience that might help you. Kim

In a message dated 3/6/2006 8:45:52 AM Central Standard Time, ajaoky@...

writes:

worry about s health and argue with his school over his

rights

[Guest guest]

Hi Kim, because we have no diagnosis they treat him horribly. Now they have

restricted his ability to call home and/ or leave early. If he has no fever,

no diarrhea or vomiting he cannot call me! I am so pissed and will deal more

with it this week. There is 8 weeks of school left and I cant wait. He moves

on to middle school and I will not have to see the folks at his current school

again. He goes to a ped. pulmonologist tomorrow so I will update then..hugs

and smiles!

Donna

[Guest guest]

Oh my hun I'm so sorry to hear all of this. Please know that my thoughts and

prayers are going out for you and your son. It's damn tough enough to deal with

all the stuff from the JRA but to have a medical/physical problem of your own to

deal with at the same time is just messed up. I wish there was something I

could say or do that would ease your troubles and pains. But alas praying for

you is all I can do. Please keep us updated on how the two of you are doing.

God Bless and fingers crossed that BC is NOT in the equation.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

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

G'day,

no actually, it is NOT a good day, not a good day at all.

It has been, yet again, one of the hardest days of my life. In amongst too

many.

The day I had to call two hospitals a number of times to make appointments

for my small son and also myself. The day I cried, because, despite

scraping up the money each month for private health insurance- we still

don't have enough to 'jump the queue' in the hospital system, and therefore

have to wait weeks for tests- therefore test results- and spend weeks lying

awake at night wondering what those test results will be.

And the day I yet again had to see my tiny little boy wired up amidst

medical equipment. And wasn't even allowed to cuddle him.

You all know the drill, a good period where you think maybe, just maybe, we

have this Arthritis business under control. Just maybe the drugs and

therapy to which we're subjecting our child, is enough to control, if not

conquer this disease.

When there is a glimmer of hope that your child will catch up on the

childhood he is missing because of it.

Then the Flare-up. Or rather, an accident at Pre School that is an everyday

occurrence, and any other child could brush off as such. But one that

leaves your little child, who has already suffered so much, even more

swollen and sore, and unable to walk again.

Sure, he tries, but the sight of him on all fours, crawling into a room, or

just lying wherever he is, crying for you to come get him...just breaks your

heart. And you feel like a failure because you have a back injury that

means you're not supposed to pick him up and carry him when he cannot walk,

else you injure yourself further.

So you drag him (and his little sister) off to more doctors, more

specialists, more radiologists, more sonographers, and whoever it is who

does the MRI, and still don't know what the outcome will be. Is it just the

trauma of the accident that's triggered the Flare? Or is it more sinister- a

fracture? And what medical torture will you again inflict on your small

son- plaster cast for the break, or aspiration and injection for the flare?

Doesn't matter. Either way it means more doctors, more hospital, more

money, more tears.

If this sounds like a sob story, well it is. I am sobbing now. I always

seem to be sobbing lately. Don't know when the tears will stop.

And I am scared that I won't be around to keep fighting this fight with my

son.

I have to see a Specialist to rule out Breast Cancer.

Jo

Bayly, 3, extended oligo

^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^

Owner/Moderator, Australian online support group for Juvenile Arthritis

jra-australia/

Check out our online Celebrity Charity auction

http://pages.ebay.com.au/charity/

And meet the Fletchers at

http://www.trikearoundaustralia.com.au

[Guest guest]

Jo ,

I wish I could say something that would ease your mind but all I

can tell you is that your family is in my prayers and I know that

God is faithful ... he will see you through this awful time.

Blessings sent , Teri

>

> G'day,

> no actually, it is NOT a good day, not a good day at all.

>

> It has been, yet again, one of the hardest days of my life. In

amongst too

> many.

>

> The day I had to call two hospitals a number of times to make

appointments

> for my small son and also myself. The day I cried, because,

despite

> scraping up the money each month for private health insurance- we

still

> don't have enough to 'jump the queue' in the hospital system, and

therefore

> have to wait weeks for tests- therefore test results- and spend

weeks lying

> awake at night wondering what those test results will be.

>

> And the day I yet again had to see my tiny little boy wired up

amidst

> medical equipment. And wasn't even allowed to cuddle him.

>

> You all know the drill, a good period where you think maybe, just

maybe, we

> have this Arthritis business under control. Just maybe the drugs

and

> therapy to which we're subjecting our child, is enough to control,

if not

> conquer this disease.

>

> When there is a glimmer of hope that your child will catch up on

the

> childhood he is missing because of it.

>

> Then the Flare-up. Or rather, an accident at Pre School that is

an everyday

> occurrence, and any other child could brush off as such. But one

that

> leaves your little child, who has already suffered so much, even

more

> swollen and sore, and unable to walk again.

>

> Sure, he tries, but the sight of him on all fours, crawling into a

room, or

> just lying wherever he is, crying for you to come get him...just

breaks your

> heart. And you feel like a failure because you have a back injury

that

> means you're not supposed to pick him up and carry him when he

cannot walk,

> else you injure yourself further.

>

> So you drag him (and his little sister) off to more doctors, more

> specialists, more radiologists, more sonographers, and whoever it

is who

> does the MRI, and still don't know what the outcome will be. Is

it just the

> trauma of the accident that's triggered the Flare? Or is it more

sinister- a

> fracture? And what medical torture will you again inflict on your

small

> son- plaster cast for the break, or aspiration and injection for

the flare?

> Doesn't matter. Either way it means more doctors, more hospital,

more

> money, more tears.

>

> If this sounds like a sob story, well it is. I am sobbing now. I

always

> seem to be sobbing lately. Don't know when the tears will stop.

>

> And I am scared that I won't be around to keep fighting this fight

with my

> son.

>

> I have to see a Specialist to rule out Breast Cancer.

>

> Jo

> Bayly, 3, extended oligo

>

>

^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*

^*^*^*^*^

> Owner/Moderator, Australian online support group for Juvenile

Arthritis

> jra-australia/

>

> Check out our online Celebrity Charity auction

> http://pages.ebay.com.au/charity/

>

> And meet the Fletchers at

> http://www.trikearoundaustralia.com.au

>

[Guest guest]

JO,

You are in my thoughts and prayers.. I hope that it isn't breast cancer.. Bayly

is also on ,y prayer list. I hope that things look better soon,

take care,

EMilie ( 6 Poly)

feel like I'm failing (looong)

>

>G'day,

>no actually, it is NOT a good day, not a good day at all.

>

>It has been, yet again, one of the hardest days of my life. In amongst too

>many.

>

>The day I had to call two hospitals a number of times to make appointments

>for my small son and also myself. The day I cried, because, despite

>scraping up the money each month for private health insurance- we still

>don't have enough to 'jump the queue' in the hospital system, and therefore

>have to wait weeks for tests- therefore test results- and spend weeks lying

>awake at night wondering what those test results will be.

>

>And the day I yet again had to see my tiny little boy wired up amidst

>medical equipment. And wasn't even allowed to cuddle him.

>

>You all know the drill, a good period where you think maybe, just maybe, we

>have this Arthritis business under control. Just maybe the drugs and

>therapy to which we're subjecting our child, is enough to control, if not

>conquer this disease.

>

>When there is a glimmer of hope that your child will catch up on the

>childhood he is missing because of it.

>

>Then the Flare-up. Or rather, an accident at Pre School that is an everyday

>occurrence, and any other child could brush off as such. But one that

>leaves your little child, who has already suffered so much, even more

>swollen and sore, and unable to walk again.

>

>Sure, he tries, but the sight of him on all fours, crawling into a room, or

>just lying wherever he is, crying for you to come get him...just breaks your

>heart. And you feel like a failure because you have a back injury that

>means you're not supposed to pick him up and carry him when he cannot walk,

>else you injure yourself further.

>

>So you drag him (and his little sister) off to more doctors, more

>specialists, more radiologists, more sonographers, and whoever it is who

>does the MRI, and still don't know what the outcome will be. Is it just the

>trauma of the accident that's triggered the Flare? Or is it more sinister- a

>fracture? And what medical torture will you again inflict on your small

>son- plaster cast for the break, or aspiration and injection for the flare?

>Doesn't matter. Either way it means more doctors, more hospital, more

>money, more tears.

>

>If this sounds like a sob story, well it is. I am sobbing now. I always

>seem to be sobbing lately. Don't know when the tears will stop.

>

>And I am scared that I won't be around to keep fighting this fight with my

>son.

>

>I have to see a Specialist to rule out Breast Cancer.

>

>Jo

>Bayly, 3, extended oligo

>

>^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^

>Owner/Moderator, Australian online support group for Juvenile Arthritis

>jra-australia/

>

>Check out our online Celebrity Charity auction

>http://pages.ebay.com.au/charity/

>

>And meet the Fletchers at

>http://www.trikearoundaustralia.com.au

>

>

>

>

[Guest guest]

Jo-

I am so sorry to hear about everything you are going through, I am

new here, and have pretty much been into myself since this whole

diagnosis began.

I just want to send out my support to you, and let you know you and

your family will get through this and you are in my prayers.

If He brings you to it, He will bring you through it.

Tanis

(Kylie 3 in April, poly?/pauci??)

>

> G'day,

> no actually, it is NOT a good day, not a good day at all.

>

> It has been, yet again, one of the hardest days of my life. In

amongst too

> many.

>

> The day I had to call two hospitals a number of times to make

appointments

> for my small son and also myself. The day I cried, because,

despite

> scraping up the money each month for private health insurance- we

still

> don't have enough to 'jump the queue' in the hospital system, and

therefore

> have to wait weeks for tests- therefore test results- and spend

weeks lying

> awake at night wondering what those test results will be.

>

> And the day I yet again had to see my tiny little boy wired up

amidst

> medical equipment. And wasn't even allowed to cuddle him.

>

> You all know the drill, a good period where you think maybe, just

maybe, we

> have this Arthritis business under control. Just maybe the drugs

and

> therapy to which we're subjecting our child, is enough to control,

if not

> conquer this disease.

>

> When there is a glimmer of hope that your child will catch up on

the

> childhood he is missing because of it.

>

> Then the Flare-up. Or rather, an accident at Pre School that is

an everyday

> occurrence, and any other child could brush off as such. But one

that

> leaves your little child, who has already suffered so much, even

more

> swollen and sore, and unable to walk again.

>

> Sure, he tries, but the sight of him on all fours, crawling into a

room, or

> just lying wherever he is, crying for you to come get him...just

breaks your

> heart. And you feel like a failure because you have a back injury

that

> means you're not supposed to pick him up and carry him when he

cannot walk,

> else you injure yourself further.

>

> So you drag him (and his little sister) off to more doctors, more

> specialists, more radiologists, more sonographers, and whoever it

is who

> does the MRI, and still don't know what the outcome will be. Is

it just the

> trauma of the accident that's triggered the Flare? Or is it more

sinister- a

> fracture? And what medical torture will you again inflict on your

small

> son- plaster cast for the break, or aspiration and injection for

the flare?

> Doesn't matter. Either way it means more doctors, more hospital,

more

> money, more tears.

>

> If this sounds like a sob story, well it is. I am sobbing now. I

always

> seem to be sobbing lately. Don't know when the tears will stop.

>

> And I am scared that I won't be around to keep fighting this fight

with my

> son.

>

> I have to see a Specialist to rule out Breast Cancer.

>

> Jo

> Bayly, 3, extended oligo

>

>

^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*

^*^*^*^*^

> Owner/Moderator, Australian online support group for Juvenile

Arthritis

> jra-australia/

>

> Check out our online Celebrity Charity auction

> http://pages.ebay.com.au/charity/

>

> And meet the Fletchers at

> http://www.trikearoundaustralia.com.au

>

[Guest guest]

Jo;

Adding my prayers to all those going out for you and Bayly over the next

few days for better news and much better days ahead.

and Rob 16 Spondy

On Mon, 6 Mar 2006 12:02:12 -0500 (GMT-05:00) Emilie

<Emilie656@...> writes:

JO,

You are in my thoughts and prayers.. I hope that it isn't breast cancer..

Bayly is also on ,y prayer list. I hope that things look better soon,

take care,

EMilie ( 6 Poly)

feel like I'm failing (looong)

>

>G'day,

>no actually, it is NOT a good day, not a good day at all.

>

>It has been, yet again, one of the hardest days of my life. In amongst

too

>many.

>

>The day I had to call two hospitals a number of times to make

appointments

>for my small son and also myself. The day I cried, because, despite

>scraping up the money each month for private health insurance- we still

>don't have enough to 'jump the queue' in the hospital system, and

therefore

>have to wait weeks for tests- therefore test results- and spend weeks

lying

>awake at night wondering what those test results will be.

>

>And the day I yet again had to see my tiny little boy wired up amidst

>medical equipment. And wasn't even allowed to cuddle him.

>

>You all know the drill, a good period where you think maybe, just maybe,

we

>have this Arthritis business under control. Just maybe the drugs and

>therapy to which we're subjecting our child, is enough to control, if

not

>conquer this disease.

>

>When there is a glimmer of hope that your child will catch up on the

>childhood he is missing because of it.

>

>Then the Flare-up. Or rather, an accident at Pre School that is an

everyday

>occurrence, and any other child could brush off as such. But one that

>leaves your little child, who has already suffered so much, even more

>swollen and sore, and unable to walk again.

>

>Sure, he tries, but the sight of him on all fours, crawling into a room,

or

>just lying wherever he is, crying for you to come get him...just breaks

your

>heart. And you feel like a failure because you have a back injury that

>means you're not supposed to pick him up and carry him when he cannot

walk,

>else you injure yourself further.

>

>So you drag him (and his little sister) off to more doctors, more

>specialists, more radiologists, more sonographers, and whoever it is who

>does the MRI, and still don't know what the outcome will be. Is it just

the

>trauma of the accident that's triggered the Flare? Or is it more

sinister- a

>fracture? And what medical torture will you again inflict on your small

>son- plaster cast for the break, or aspiration and injection for the

flare?

>Doesn't matter. Either way it means more doctors, more hospital, more

>money, more tears.

>

>If this sounds like a sob story, well it is. I am sobbing now. I

always

>seem to be sobbing lately. Don't know when the tears will stop.

>

>And I am scared that I won't be around to keep fighting this fight with

my

>son.

>

>I have to see a Specialist to rule out Breast Cancer.

>

>Jo

>Bayly, 3, extended oligo

>

>^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^

*^*^*^

>Owner/Moderator, Australian online support group for Juvenile Arthritis

>jra-australia/

>

>Check out our online Celebrity Charity auction

>http://pages.ebay.com.au/charity/

>

>And meet the Fletchers at

>http://www.trikearoundaustralia.com.au

>

>

>

>

[Guest guest]

Hugs Jo. I am so sorry you are going through all this. I will continue

to hope and pray for good news for you and that this burden on your

shoulders becomes lighter. I am thankful we are all here for you to vent

to, cry all you want, we're giving you lots of virtual hugs. Michele

(18,spondy)

feel like I'm failing (looong)

G'day,

no actually, it is NOT a good day, not a good day at all.

It has been, yet again, one of the hardest days of my life. In amongst

too

many.

The day I had to call two hospitals a number of times to make

appointments

for my small son and also myself. The day I cried, because, despite

scraping up the money each month for private health insurance- we still

don't have enough to 'jump the queue' in the hospital system, and

therefore

have to wait weeks for tests- therefore test results- and spend weeks

lying

awake at night wondering what those test results will be.

And the day I yet again had to see my tiny little boy wired up amidst

medical equipment. And wasn't even allowed to cuddle him.

You all know the drill, a good period where you think maybe, just maybe,

we

have this Arthritis business under control. Just maybe the drugs and

therapy to which we're subjecting our child, is enough to control, if

not

conquer this disease.

When there is a glimmer of hope that your child will catch up on the

childhood he is missing because of it.

Then the Flare-up. Or rather, an accident at Pre School that is an

everyday

occurrence, and any other child could brush off as such. But one that

leaves your little child, who has already suffered so much, even more

swollen and sore, and unable to walk again.

Sure, he tries, but the sight of him on all fours, crawling into a room,

or

just lying wherever he is, crying for you to come get him...just breaks

your

heart. And you feel like a failure because you have a back injury that

means you're not supposed to pick him up and carry him when he cannot

walk,

else you injure yourself further.

So you drag him (and his little sister) off to more doctors, more

specialists, more radiologists, more sonographers, and whoever it is who

does the MRI, and still don't know what the outcome will be. Is it just

the

trauma of the accident that's triggered the Flare? Or is it more

sinister- a

fracture? And what medical torture will you again inflict on your small

son- plaster cast for the break, or aspiration and injection for the

flare?

Doesn't matter. Either way it means more doctors, more hospital, more

money, more tears.

If this sounds like a sob story, well it is. I am sobbing now. I

always

seem to be sobbing lately. Don't know when the tears will stop.

And I am scared that I won't be around to keep fighting this fight with

my

son.

I have to see a Specialist to rule out Breast Cancer.

Jo

Bayly, 3, extended oligo

^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^

*^*^*^

Owner/Moderator, Australian online support group for Juvenile Arthritis

jra-australia/

Check out our online Celebrity Charity auction

http://pages.ebay.com.au/charity/

And meet the Fletchers at

http://www.trikearoundaustralia.com.au

[Guest guest]

Hi Jo:

Please know that I am thinking of you all and sending prayers your way. I

know it's hard to stay positive when you feel like every step you take someone

is pushing you back. Good luck with seeing the specialist for yourself. My

sister went through a breast cancer scare and all was fine. I pray you have

the same result.

Take care.

Patty

[Guest guest]

Jo,

(((((((((((((((((((((((((((HUGS & PRAYERS SENT TO U AN YOUR

FAMILY)))))))))))))))))) please keep us informed as to what is going on. Take

care

Lynn,16fibro,jra,(remission),cfs,ibs,migranines,Meg21 poly,ibs

Grant & Jo <joking70@...> wrote:

G'day,

no actually, it is NOT a good day, not a good day at all.

It has been, yet again, one of the hardest days of my life. In amongst too

many.

The day I had to call two hospitals a number of times to make appointments

for my small son and also myself. The day I cried, because, despite

scraping up the money each month for private health insurance- we still

don't have enough to 'jump the queue' in the hospital system, and therefore

have to wait weeks for tests- therefore test results- and spend weeks lying

awake at night wondering what those test results will be.

And the day I yet again had to see my tiny little boy wired up amidst

medical equipment. And wasn't even allowed to cuddle him.

You all know the drill, a good period where you think maybe, just maybe, we

have this Arthritis business under control. Just maybe the drugs and

therapy to which we're subjecting our child, is enough to control, if not

conquer this disease.

When there is a glimmer of hope that your child will catch up on the

childhood he is missing because of it.

Then the Flare-up. Or rather, an accident at Pre School that is an everyday

occurrence, and any other child could brush off as such. But one that

leaves your little child, who has already suffered so much, even more

swollen and sore, and unable to walk again.

Sure, he tries, but the sight of him on all fours, crawling into a room, or

just lying wherever he is, crying for you to come get him...just breaks your

heart. And you feel like a failure because you have a back injury that

means you're not supposed to pick him up and carry him when he cannot walk,

else you injure yourself further.

So you drag him (and his little sister) off to more doctors, more

specialists, more radiologists, more sonographers, and whoever it is who

does the MRI, and still don't know what the outcome will be. Is it just the

trauma of the accident that's triggered the Flare? Or is it more sinister- a

fracture? And what medical torture will you again inflict on your small

son- plaster cast for the break, or aspiration and injection for the flare?

Doesn't matter. Either way it means more doctors, more hospital, more

money, more tears.

If this sounds like a sob story, well it is. I am sobbing now. I always

seem to be sobbing lately. Don't know when the tears will stop.

And I am scared that I won't be around to keep fighting this fight with my

son.

I have to see a Specialist to rule out Breast Cancer.

Jo

Bayly, 3, extended oligo

^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^

Owner/Moderator, Australian online support group for Juvenile Arthritis

jra-australia/

Check out our online Celebrity Charity auction

http://pages.ebay.com.au/charity/

And meet the Fletchers at

http://www.trikearoundaustralia.com.au

[Guest guest]

I find myself making sure I have a drink next to me when I read these posts.

It helps to soften the lump in my throat that I get. Hang in there Grant

and Jo. Just do the best you can and little Bayly will see your efforts and

thoughts and be comforted by them. believe me, I know.

(Poly 35)

feel like I'm failing (looong)

G'day,

no actually, it is NOT a good day, not a good day at all.

It has been, yet again, one of the hardest days of my life. In amongst too

many.

The day I had to call two hospitals a number of times to make appointments

for my small son and also myself. The day I cried, because, despite

scraping up the money each month for private health insurance- we still

don't have enough to 'jump the queue' in the hospital system, and therefore

have to wait weeks for tests- therefore test results- and spend weeks lying

awake at night wondering what those test results will be.

And the day I yet again had to see my tiny little boy wired up amidst

medical equipment. And wasn't even allowed to cuddle him.

You all know the drill, a good period where you think maybe, just maybe, we

have this Arthritis business under control. Just maybe the drugs and

therapy to which we're subjecting our child, is enough to control, if not

conquer this disease.

When there is a glimmer of hope that your child will catch up on the

childhood he is missing because of it.

Then the Flare-up. Or rather, an accident at Pre School that is an everyday

occurrence, and any other child could brush off as such. But one that

leaves your little child, who has already suffered so much, even more

swollen and sore, and unable to walk again.

Sure, he tries, but the sight of him on all fours, crawling into a room, or

just lying wherever he is, crying for you to come get him...just breaks your

heart. And you feel like a failure because you have a back injury that

means you're not supposed to pick him up and carry him when he cannot walk,

else you injure yourself further.

So you drag him (and his little sister) off to more doctors, more

specialists, more radiologists, more sonographers, and whoever it is who

does the MRI, and still don't know what the outcome will be. Is it just the

trauma of the accident that's triggered the Flare? Or is it more sinister- a

fracture? And what medical torture will you again inflict on your small

son- plaster cast for the break, or aspiration and injection for the flare?

Doesn't matter. Either way it means more doctors, more hospital, more

money, more tears.

If this sounds like a sob story, well it is. I am sobbing now. I always

seem to be sobbing lately. Don't know when the tears will stop.

And I am scared that I won't be around to keep fighting this fight with my

son.

I have to see a Specialist to rule out Breast Cancer.

Jo

Bayly, 3, extended oligo

^*^*^*^*^*^*^*^**^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^

*^

Owner/Moderator, Australian online support group for Juvenile Arthritis

jra-australia/

Check out our online Celebrity Charity auction

http://pages.ebay.com.au/charity/

And meet the Fletchers at

http://www.trikearoundaustralia.com.au