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Colleen, I know this was for Beth, but I just wanted to say, your poem brought me to tears.....of course, after I put on my make-up. I have lost both of my parents....so it really hit home for me.

Thanks for sharing it.

Helen

Beth

Beth-

I am so sorry for your loss. My prayers go out to you and your family. I know there is no salve for the heartache. I just have always found this poem comforting in grief.

Colleen - mom to Caitlin, 10, systemic

Do not stand at my grave and weep, I am not there, I do not sleep. I am in a thousand winds that blow, I am the softly falling snow. I am the gentle showers of rain, I am the fields of ripening grain. I am in the morning hush, I am in the graceful rush Of beautiful birds in circling flight, I am the starshine of the night. I am in the flowers that bloom, I am in a quiet room. I am in the birds that sing, I am in each lovely thing. Do not stand at my grave and cry, I am not there. I do not die.

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Colleen,

Yes that was a very beautiful poem. One I have seen many different times. but also one that brings tears to my eyes because of the special people it brings to my mind.

veri

Colleen

Colleen, I know this was for Beth, but I just wanted to say, your poem brought me to tears.....of course, after I put on my make-up. I have lost both of my parents....so it really hit home for me.

Thanks for sharing it.

Helen

Beth

Beth-

I am so sorry for your loss. My prayers go out to you and your family. I know there is no salve for the heartache. I just have always found this poem comforting in grief.

Colleen - mom to Caitlin, 10, systemic

Do not stand at my grave and weep,

I am not there, I do not sleep.

I am in a thousand winds that blow,

I am the softly falling snow.

I am the gentle showers of rain,

I am the fields of ripening grain.

I am in the morning hush,

I am in the graceful rush

Of beautiful birds in circling flight,

I am the starshine of the night.

I am in the flowers that bloom,

I am in a quiet room.

I am in the birds that sing,

I am in each lovely thing.

Do not stand at my grave and cry,

I am not there. I do not die.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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  • 2 years later...

Hi -

 

Posterior for the implant.  He had to do some small incisions anterior last

time - they had to snip/release a tendon to get her leg straight.... But the

scars in front are so small and faded you can't even see.  The scar in back is

covered by a bathing suit.  I find it amazing really - and would love to take a

picture... but somehow, I don't think she would let me :)

 

Thanks for the good thoughts....

Colleen

>

> Wow second hip replacement. Will this ever not shock me?

>

> Amy

>

> ________________________________

> From: Colleen <bookissmom@...>

>

> Sent: Tue, October 5, 2010 9:31:20 PM

> Subject: Becky....

>

> Hi Becky-

>

> Just wanted to say thanks for the note! It;s so great to see you

> on the

> boards.... Over the years, you are always available for great

> information and

> advice - even when has been doing well. I think it's a

> tribute to what an

> advocate you are - not just for your son, but for all of our kids.

>

> I'm glad your little football player is doing well! Our kids -

> who once would

> have played together at a JA conference - would be so shy around

> each other

> now. Those tween years :)

>

> Caitlin has responded very well to Actemra - we're pretty happy

> about that. Her

> right hip has gone downhill fast though - and her second hip

> replacement is

> scheduled for November 16. But, she's actually looking forward

> to it. Unless

> she flares after the surgery - this could mean the first real

> pain-free days she

> has had in a looooong time. IT was her idea to see the surgeon

> again - and he

> concurred that it's time. The kids get the week of Thanksgiving

> off, and her

> surgery is the week prior to that. So... we're planning on her

> being back in

> school after Thanksgiving.... and it should work if she recovers

> as quickly as

> last time :)

>

> Hope you are enjoying the season with your football star!

> Best hopes to you old friend-

> Colleen

>

>

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lol about the pictures, I would want to do the same. When will she have her

surgery?

Amy - avery 17 systemic

________________________________

From: Colleen <bookissmom@...>

Sent: Wed, October 6, 2010 11:01:48 AM

Subject: Re: colleen

Hi -

Posterior for the implant. He had to do some small incisions anterior last time

- they had to snip/release a tendon to get her leg straight.... But the scars in

front are so small and faded you can't even see. The scar in back is covered by

a bathing suit. I find it amazing really - and would love to take a picture...

but somehow, I don't think she would let me :)

Thanks for the good thoughts....

Colleen

>

> Wow second hip replacement. Will this ever not shock me?

>

> Amy

>

> ________________________________

> From: Colleen <bookissmom@...>

>

> Sent: Tue, October 5, 2010 9:31:20 PM

> Subject: Becky....

>

> Hi Becky-

>

> Just wanted to say thanks for the note! It;s so great to see you

> on the

> boards.... Over the years, you are always available for great

> information and

> advice - even when has been doing well. I think it's a

> tribute to what an

> advocate you are - not just for your son, but for all of our kids.

>

> I'm glad your little football player is doing well! Our kids -

> who once would

> have played together at a JA conference - would be so shy around

> each other

> now. Those tween years :)

>

> Caitlin has responded very well to Actemra - we're pretty happy

> about that. Her

> right hip has gone downhill fast though - and her second hip

> replacement is

> scheduled for November 16. But, she's actually looking forward

> to it. Unless

> she flares after the surgery - this could mean the first real

> pain-free days she

> has had in a looooong time. IT was her idea to see the surgeon

> again - and he

> concurred that it's time. The kids get the week of Thanksgiving

> off, and her

> surgery is the week prior to that. So... we're planning on her

> being back in

> school after Thanksgiving.... and it should work if she recovers

> as quickly as

> last time :)

>

> Hope you are enjoying the season with your football star!

> Best hopes to you old friend-

> Colleen

>

>

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Thank you for sharing that, " or us – it was like the ground opened up and

sent

us down the rabbit hole to an alternate world – immediately to a dark, unknown

space. It was healthy to sick in sixty seconds… well, in a few days, but it

felt

like minutes. " Ya wow, I still can't believe how quickly it happened. I

thought they were crazy when they said arthritis that causes fever, honestly it

didn't even seem like a possibility, my son was sick! He didn't have

arthritis. don't I know differently now. Honestly I didn't know this had ever

happened to anyone else, before this past month. And even in the beginning I

couldn't imagine that other kids had gone through this. We got lucky the only

test they didn't do was the spinal tap. I do have to call about the pealing

hands tomorrow. I will say that the cardiologist that is the kawasaki expert

did see him after his second echo and she said he didn't have it cause if he did

she'd be all over it. So honestly at this point I'm not ruling anything out.

lol

amy

________________________________

From: Colleen <bookissmom@...>

Sent: Sun, October 10, 2010 8:13:40 PM

Subject: nn, Amy updates

Hi-

Just wanted to thank you both for the updates! nn, I'm glad is doing

well on the kineret. I know lots of kids that say that over time, the stinging

becomes less and less... I sure hope that is the case for her! Wouldn't it be

wonderful if this is the answer!!!!

Amy - I'm so sorry to hear of your continued struggle. I meant to post the

other day... reading your story, I am reminded again that dealing with diagnosis

is parallel to dealing with grief upon a loved one's death. That is, you sort

of go through stages of grief - denial, anger, bargaining, depression,

acceptance. And it's not a straight line - but a zig-zag back and forth through

the stages... feeling OK one day and back to sorrow or anger the next. You

mentioned once wanting to know some other onset stories... but I was afraid to

post at the time - because I didn't want to scare you. I don't think I could

scare you now, because you and your family have already been through heck and

back :)

I write a blog on the AF page - and here was my entry about thsoe early days:

http://community.arthritis.org/jiamoms/blog/2010/02/09/those-dark-early-days

I truly hope the rilonacept works... especially since the kineret had such an

immediate response. The peeling is worrisome - you're right, it sounds so much

like Kawasaki....

Caitlin has often had a stange, itchy rash on the palm of her hand. Our rheumy

has always attributed it to either allergies, or systemic rash - even when she

was having no rash anywhere else for years. We're never really sure on that

one....

I hope tomorrow is a good day for Avery! I think you said the med came through

the hospital pharmacy? Maybe they'll work out a payment plan for you. My

hospital is always great about letting me make payments. I remember when we got

the first bill after her original hospitalization.... when I called to make

payment arrangements, they said " If you have half of the total now, we'll take

it as payment in full " .... and I was blown away. Since then, I always just call

and roll the bills into one and make monthly payments.

Our annual out of pocket max Caitlin is $3K....and we'll be hitting that before

her surgery for sure. Bright side, right?

Best hopes to you-

Colleen - mom to Caitlin, 12, systemic

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Thank you for sharing that, " or us – it was like the ground opened up and

sent

us down the rabbit hole to an alternate world – immediately to a dark, unknown

space. It was healthy to sick in sixty seconds… well, in a few days, but it

felt

like minutes. " Ya wow, I still can't believe how quickly it happened. I

thought they were crazy when they said arthritis that causes fever, honestly it

didn't even seem like a possibility, my son was sick! He didn't have

arthritis. don't I know differently now. Honestly I didn't know this had ever

happened to anyone else, before this past month. And even in the beginning I

couldn't imagine that other kids had gone through this. We got lucky the only

test they didn't do was the spinal tap. I do have to call about the pealing

hands tomorrow. I will say that the cardiologist that is the kawasaki expert

did see him after his second echo and she said he didn't have it cause if he did

she'd be all over it. So honestly at this point I'm not ruling anything out.

lol

amy

________________________________

From: Colleen <bookissmom@...>

Sent: Sun, October 10, 2010 8:13:40 PM

Subject: nn, Amy updates

Hi-

Just wanted to thank you both for the updates! nn, I'm glad is doing

well on the kineret. I know lots of kids that say that over time, the stinging

becomes less and less... I sure hope that is the case for her! Wouldn't it be

wonderful if this is the answer!!!!

Amy - I'm so sorry to hear of your continued struggle. I meant to post the

other day... reading your story, I am reminded again that dealing with diagnosis

is parallel to dealing with grief upon a loved one's death. That is, you sort

of go through stages of grief - denial, anger, bargaining, depression,

acceptance. And it's not a straight line - but a zig-zag back and forth through

the stages... feeling OK one day and back to sorrow or anger the next. You

mentioned once wanting to know some other onset stories... but I was afraid to

post at the time - because I didn't want to scare you. I don't think I could

scare you now, because you and your family have already been through heck and

back :)

I write a blog on the AF page - and here was my entry about thsoe early days:

http://community.arthritis.org/jiamoms/blog/2010/02/09/those-dark-early-days

I truly hope the rilonacept works... especially since the kineret had such an

immediate response. The peeling is worrisome - you're right, it sounds so much

like Kawasaki....

Caitlin has often had a stange, itchy rash on the palm of her hand. Our rheumy

has always attributed it to either allergies, or systemic rash - even when she

was having no rash anywhere else for years. We're never really sure on that

one....

I hope tomorrow is a good day for Avery! I think you said the med came through

the hospital pharmacy? Maybe they'll work out a payment plan for you. My

hospital is always great about letting me make payments. I remember when we got

the first bill after her original hospitalization.... when I called to make

payment arrangements, they said " If you have half of the total now, we'll take

it as payment in full " .... and I was blown away. Since then, I always just call

and roll the bills into one and make monthly payments.

Our annual out of pocket max Caitlin is $3K....and we'll be hitting that before

her surgery for sure. Bright side, right?

Best hopes to you-

Colleen - mom to Caitlin, 12, systemic

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