Re: Aundrea's sad email to me! :-(

[Guest guest]

OH ,

My heart aches for you and Aundrea.

I have had this disese for 34 years - I do know how she felt and how she

feels if that makes any sense.

At times, when I was younger I felt like life, and girlie things were just

not gonna ever happen for me. They did eventually happen - in different ways

maybe.

This disease is awful and good - in its own ways. I truly believe God only

gives this disease to people (kids , adults, families, etc) that He KNOWS can

handle it. People with JRA and their families truly do appreciate all the good

days in life so much more than those who are " normal " .

My thoughts and prayers are with you. Behind every dark cloud the sun is

STILL there - just be patient and wait.

I am 37 and had JRA since I was 3 - I am married (17 yrs) and have a 6 yr old

daughter. Life - a GREAT life with JRA is very very possible - all the drugs

treatments etc that are around now were NOT around when I wasa dx.

You are doing everything possible as a Mom - emotional issues are something

we with JRA have to learn to deal with and she will as she gets older (been

there - done that myself as they say).

Stay strong, keep praying, and always BELIEVE!!!!!

love, prayers, and blessings

(age 37 - dx poly @ age 3)

[Guest guest]

Big hugs ! My heart ached to read what Aundrea wrote and how do I

relate. This disease sucks and just as I said to Helen about Nick. It is ok to

hate it, it is ok to cry and ok to have bad days. It is ok to have friends who

say they wish they had it, and it shows such courage to say you wish they could

BUT only long enough to get a good dose of understanding. There are bad days

and there are good days. There are days of hope and days of despair. There

are days of dread and there are days of fun. Sometimes these days may be only

minutes or hours but as a JRA adult who has dealt with all emotion

imaginable, like we must hang tight for the sun behind the clouds.

There are

still many days I wish I did not have this crap. Friday morning I could not

walk. I could not stand and it was taking all I had to see my son out the door

and off to school He said Friday evening, " mom, I have never seen you cry so

bad or hurt so much, I was scared " . My heart broke not for me, but for him.

Just as a moms heart does for their child my heart was crying, it was angry,

and all I could do was tell my son I love him, we are tough and we will win!

Aundrea has a wonderful, caring, supportive and loving mom. She is strong

young woman and will gain even more strength and courage with time. It is so

hard

but knowing my mom was and still is my crutch makes it all a lil better.

Hugs to you both and no matter what hang tight and hang tough!

Donna

[Guest guest]

Oh, this just breaks my heart too....These kids have so much more to deal with,

and because they look 'normal' (whatever that is) I think they even have a

harder time, because they're dealing with this element of people who seem not to

believe that they're sick. I wish I knew what to say.

My only thoughts are these: She needs more than anything, someone who will

listen to her and validate her feelings, not telling her she shouldn't feel the

way she does, but to try to understand why she feels this way. Then, maybe a

heart-to-heart with her about the way her friends are coping emotionally with

her illness...which is what they are doing, just all in their own ways, because

of their different personalities, upbringings, hangups, whatever. It doesn't

make anyone wrong or right, just different.

Has she ever talked with a therapist or counselor? I had some issues in my

childhood that it was extremely helpful for me to talk with a counselor....it's

nothing to be ashamed of...everyone needs to take care of their whole

self....physical, spiritual, emotional, mental....and this is just one way of

doing so. I don't know how you personally feel about this, but there's so much

social stigma attached to mental health issues in general, it keeps a lot of

people from getting help they need. I think, especially as a preteen/teen, it

helped to chat with someone who had no expectations of me....even though my mom

was very supportive, sometimes talking to someone outside the family, trained to

help, can take a huge weight off your shoulders.

Take care, and I pray everyday for God to take this terrible disease away too!

Kathy

mom to , 23 mos, poly

and Luke 4-1/2

sonia1md <sonia1md@...> wrote:

Aundrea sent this email to me on Sunday. It broke my heart and

reminded me of what Helen was saying about Nick. Sometimes I wonder

if I am doing enough to take care of Aundrea's emotional well-being

with all the focus be concentrated on her physical illness. She had

a rought night Sat. She had the mtx shot and had lots of tummy

pain. She woke up in the middle of the night and vomited and

continued to have off/on tummy pain, knot in throat etc...I think

its GERD related but not sure.

In the email she mentions her friends. One of her friends had said

that she wished she had arthritis so that she could go home whenever

she wanted. ( - Aundrea age 11 systemic jra/GERD)

Any thoughts on how to make things better?????

Im stinken tired of being sick! I hate it! I'm missing out of life!

I want to spend time with friends, girl days with you!But i cant

because i am home sick! I hate this more than anything! I pray and

pray for it to go away and nothing! When is God going to do a

merical? I know he is and i want that merical! I want it now! I want

to be healed mom!! I want to be healed! I cant talk about my pain

because no one knows how i feel! When im stuck in bed, im pain. When

i cant talk i'm throbing. When i cant eat im angery! I never have

time to enjoy life! When i go to school im happy even though in the

morning i dont want to go! I'm happy that im there! Because being in

school means that i am healthy able to run and love life!

wishes that she has arthitis, i want to give it to her. I want her

to see how i feel. I would give it to her and take it back after she

relizes that i have pain! But i cant! would take it away.

would want it. Jocelyn never talkes about it! I don't know

what i can do! I just sit there in pain watching so t.v. show.I'M

TIRED OF THIS PAIN!!!

your till

The earth is heald

aundrea

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Hi :

What a heart wrenching letter. It's so sad that she hurts not only

physically, but emotionally as well. I pray she gets a break and her miracle

soon.

She's gone through so much in her young life.

When I was reading about her friends 'wanting' arthritis and her wishing

they could experience, I couldn't help but think of those pregnancy suits that

people can wear to experience --- a bit --- what it is like to have the

additional weight and your center of gravity off balance. It's to bad there

wasn't

something like this for arthritis. So people could get a clue of how

painful it is to have, to walk with, work with, live with, etc. Might be a

good

idea eh.

, the fact that she wrote to you is a sign of your relationship with

your daughter. She knows you love her, are there for her and she can reach out

to you for anything she needs. That's half the battle. Keep the

communication open and keep on doing what you are doing.

I'll continue to pray for Aundrea's miracle.

Take care.

Patty

[Guest guest]

Hi Patty,

Thanks for your encouraging note. Aundrea is doing better today. The

frustrating thing is that her joint pain has improved SO much, yet

the gastric issues in some ways are harder for her to deal with. I

just hope that the vomiting last sat. wasn't induced by the mtx.

Maybe I will give her two doses of anti-nausea meds and see how

things go. She will limp around in pain with joints and not even

complain but when the nausea and stomach cramps come she just melts

into a puddle of tears.

My plan is to seek as GI consult if these issues don't resolve in

the next couple of weeks.

As for her emotional well-being, I think a little more " girl time "

would be good. We are planning a picnic in the park outing for the

weekend.

(drea 11 systemic jra/gerd)

>

>

> Hi :

>

> What a heart wrenching letter. It's so sad that she hurts not

only

> physically, but emotionally as well. I pray she gets a break and

her miracle soon.

> She's gone through so much in her young life.

>

> When I was reading about her friends 'wanting' arthritis and her

wishing

> they could experience, I couldn't help but think of those

pregnancy suits that

> people can wear to experience --- a bit --- what it is like to

have the

> additional weight and your center of gravity off balance. It's to

bad there wasn't

> something like this for arthritis. So people could get a clue of

how

> painful it is to have, to walk with, work with, live with, etc.

Might be a good

> idea eh.

>

> , the fact that she wrote to you is a sign of your

relationship with

> your daughter. She knows you love her, are there for her and she

can reach out

> to you for anything she needs. That's half the battle. Keep the

> communication open and keep on doing what you are doing.

>

> I'll continue to pray for Aundrea's miracle.

>

> Take care.

> Patty

>

>

>

[Guest guest]

Donna,

You are right in that for Aundrea the dark clouds only last during

her most miserable moments. As soon as the pain lifts she is right

back to being a bubbly, goofy 11 year old.

It just hurts this mama's heart to hear her sadness even if its

brief...But she is doing better today and like you said the sun will

shine thru the clouds.

(aundrea 11 systemic jra/gerd)

>

> Big hugs ! My heart ached to read what Aundrea wrote and how

do I

> relate. This disease sucks and just as I said to Helen about Nick.

It is ok to

> hate it, it is ok to cry and ok to have bad days. It is ok to have

friends who

> say they wish they had it, and it shows such courage to say you

wish they could

> BUT only long enough to get a good dose of understanding. There

are bad days

> and there are good days. There are days of hope and days of

despair. There

> are days of dread and there are days of fun. Sometimes these days

may be only

> minutes or hours but as a JRA adult who has dealt with all

emotion

> imaginable, like we must hang tight for the sun behind

the clouds. There are

> still many days I wish I did not have this crap. Friday morning I

could not

> walk. I could not stand and it was taking all I had to see my son

out the door

> and off to school He said Friday evening, " mom, I have never seen

you cry so

> bad or hurt so much, I was scared " . My heart broke not for me,

but for him.

> Just as a moms heart does for their child my heart was crying, it

was angry,

> and all I could do was tell my son I love him, we are tough and

we will win!

> Aundrea has a wonderful, caring, supportive and loving mom. She

is strong

> young woman and will gain even more strength and courage with

time. It is so hard

> but knowing my mom was and still is my crutch makes it all a lil

better.

> Hugs to you both and no matter what hang tight and hang tough!

> Donna

>

>

>

[Guest guest]

,

Thank you so much for your post. Its always so refreshing to hear

how other jra vets have gone thru this journey and dispite many

challenges are still able to find joy, purpose and happiness.

You and I are similar in age. I am also 37, married 18 years, but

started my family a little earlier...oldest child is 14 and drea is

11.

Your perspective was very helpful and I know that Aundrea is going

to turn out just fine. I am glad that writing is an escape for

her. She pours it all out on paper and then kind of moves on.

Leaves me lingering in thought over if I am doing the right things,

but for her its kind of cathartic and then its onto something

else! :-)

Blessings,

(drea 11 systemic jra/gerd)

>

> OH ,

> My heart aches for you and Aundrea.

> I have had this disese for 34 years - I do know how she felt and

how she

> feels if that makes any sense.

> At times, when I was younger I felt like life, and girlie things

were just

> not gonna ever happen for me. They did eventually happen - in

different ways

> maybe.

> This disease is awful and good - in its own ways. I truly believe

God only

> gives this disease to people (kids , adults, families, etc) that

He KNOWS can

> handle it. People with JRA and their families truly do appreciate

all the good

> days in life so much more than those who are " normal " .

> My thoughts and prayers are with you. Behind every dark cloud the

sun is

> STILL there - just be patient and wait.

> I am 37 and had JRA since I was 3 - I am married (17 yrs) and have

a 6 yr old

> daughter. Life - a GREAT life with JRA is very very possible -

all the drugs

> treatments etc that are around now were NOT around when I wasa dx.

> You are doing everything possible as a Mom - emotional issues are

something

> we with JRA have to learn to deal with and she will as she gets

older (been

> there - done that myself as they say).

> Stay strong, keep praying, and always BELIEVE!!!!!

>

>

>

> love, prayers, and blessings

> (age 37 - dx poly @ age 3)

>

>

>

>

>

>

>

>

[Guest guest]

Kathy,

You are a very sweet and compassionate person. Its quite evident in

your posts! :-)

I have thought about counseling and no I am not opposed to it. My

background is socialwork/counseling and I believe that it can be

very beneficial.

I thought about sending her to the school counselor but I am just

not sure if thats the right person. I would probably feel more

comfortable sending her to a christian counselor. Alot of Aundrea's

coping mechanisms involves her faith, as you could probably tell

from her email. When she is really hurting she will pray and this

gives her a lot of comfort and peace.

I also know that 11 is an emotional age for any girl with or without

a chronic health problem...Its kind of funny how Aundrea can pour

herself out in this desperate email but the next day she is feeling

so much better and she is off to school, hanging out with her

girlfriend and dancing to music....The rollercoaster world of

adolescence! :-) I think I prefer that ride over the JRA ride! :-)

I will keep counseling in mind and if I notice any symptoms of

depression then I will certainly pursue it.

Thanks for your suggestions,

blessings,

sonia (aundrea 11 systemic jra/gerd)

> Aundrea sent this email to me on Sunday. It broke my

heart and

> reminded me of what Helen was saying about Nick. Sometimes I

wonder

> if I am doing enough to take care of Aundrea's emotional well-

being

> with all the focus be concentrated on her physical illness. She

had

> a rought night Sat. She had the mtx shot and had lots of tummy

> pain. She woke up in the middle of the night and vomited and

> continued to have off/on tummy pain, knot in throat etc...I think

> its GERD related but not sure.

> In the email she mentions her friends. One of her friends had said

> that she wished she had arthritis so that she could go home

whenever

> she wanted. ( - Aundrea age 11 systemic jra/GERD)

> Any thoughts on how to make things better?????

>

> Im stinken tired of being sick! I hate it! I'm missing out of

life!

> I want to spend time with friends, girl days with you!But i cant

> because i am home sick! I hate this more than anything! I pray and

> pray for it to go away and nothing! When is God going to do a

> merical? I know he is and i want that merical! I want it now! I

want

> to be healed mom!! I want to be healed! I cant talk about my pain

> because no one knows how i feel! When im stuck in bed, im pain.

When

> i cant talk i'm throbing. When i cant eat im angery! I never have

> time to enjoy life! When i go to school im happy even though in

the

> morning i dont want to go! I'm happy that im there! Because being

in

> school means that i am healthy able to run and love life!

> wishes that she has arthitis, i want to give it to her. I want her

> to see how i feel. I would give it to her and take it back after

she

> relizes that i have pain! But i cant! would take it away.

> would want it. Jocelyn never talkes about it! I don't know

> what i can do! I just sit there in pain watching so t.v. show.I'M

> TIRED OF THIS PAIN!!!

>

> your till

> The earth is heald

>

> aundrea

>

>

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

:

Just wanted to chime in with thoughts and prayers for Aundrea. I am so

sorry that the GERD is still going strong. Have you considered seeing a

GI specialist yet??

and Rob 17 Spondy

On Tue, 26 Sep 2006 16:26:03 -0000 " sonia1md " <sonia1md@...>

writes:

Donna,

You are right in that for Aundrea the dark clouds only last during

her most miserable moments. As soon as the pain lifts she is right

back to being a bubbly, goofy 11 year old.

It just hurts this mama's heart to hear her sadness even if its

brief...But she is doing better today and like you said the sun will

shine thru the clouds.

(aundrea 11 systemic jra/gerd)

>

> Big hugs ! My heart ached to read what Aundrea wrote and how

do I

> relate. This disease sucks and just as I said to Helen about Nick.

It is ok to

> hate it, it is ok to cry and ok to have bad days. It is ok to have

friends who

> say they wish they had it, and it shows such courage to say you

wish they could

> BUT only long enough to get a good dose of understanding. There

are bad days

> and there are good days. There are days of hope and days of

despair. There

> are days of dread and there are days of fun. Sometimes these days

may be only

> minutes or hours but as a JRA adult who has dealt with all

emotion

> imaginable, like we must hang tight for the sun behind

the clouds. There are

> still many days I wish I did not have this crap. Friday morning I

could not

> walk. I could not stand and it was taking all I had to see my son

out the door

> and off to school He said Friday evening, " mom, I have never seen

you cry so

> bad or hurt so much, I was scared " . My heart broke not for me,

but for him.

> Just as a moms heart does for their child my heart was crying, it

was angry,

> and all I could do was tell my son I love him, we are tough and

we will win!

> Aundrea has a wonderful, caring, supportive and loving mom. She

is strong

> young woman and will gain even more strength and courage with

time. It is so hard

> but knowing my mom was and still is my crutch makes it all a lil

better.

> Hugs to you both and no matter what hang tight and hang tough!

> Donna

>

>

>

[Guest guest]

Hi ,

thanks for the prayers. Yes I defiantely plan on moving onto a gi

doc. Our insurance requires that she fail 2 drugs first before

moving on to anything else (more expensive drugs) She has 2 more

weeks to go with the Zantac and then I will return to the ped and

get the gi referral unless of course the problem goes away! :-)

(Aundrea 11 systemic jra/gerd)-

-- In , snooksmama@... wrote:

>

> :

> Just wanted to chime in with thoughts and prayers for Aundrea. I

am so

> sorry that the GERD is still going strong. Have you considered

seeing a

> GI specialist yet??

> and Rob 17 Spondy

>

> On Tue, 26 Sep 2006 16:26:03 -0000 " sonia1md " <sonia1md@...>

> writes:

> Donna,

>

> You are right in that for Aundrea the dark clouds only last during

> her most miserable moments. As soon as the pain lifts she is right

> back to being a bubbly, goofy 11 year old.

>

> It just hurts this mama's heart to hear her sadness even if its

> brief...But she is doing better today and like you said the sun

will

> shine thru the clouds.

>

> (aundrea 11 systemic jra/gerd)

>

>

> >

> > Big hugs ! My heart ached to read what Aundrea wrote and

how

> do I

> > relate. This disease sucks and just as I said to Helen about

Nick.

> It is ok to

> > hate it, it is ok to cry and ok to have bad days. It is ok to

have

> friends who

> > say they wish they had it, and it shows such courage to say you

> wish they could

> > BUT only long enough to get a good dose of understanding. There

> are bad days

> > and there are good days. There are days of hope and days of

> despair. There

> > are days of dread and there are days of fun. Sometimes these

days

> may be only

> > minutes or hours but as a JRA adult who has dealt with all

> emotion

> > imaginable, like we must hang tight for the sun behind

> the clouds. There are

> > still many days I wish I did not have this crap. Friday morning

I

> could not

> > walk. I could not stand and it was taking all I had to see my

son

> out the door

> > and off to school He said Friday evening, " mom, I have never

seen

> you cry so

> > bad or hurt so much, I was scared " . My heart broke not for me,

> but for him.

> > Just as a moms heart does for their child my heart was crying,

it

> was angry,

> > and all I could do was tell my son I love him, we are tough and

> we will win!

> > Aundrea has a wonderful, caring, supportive and loving mom. She

> is strong

> > young woman and will gain even more strength and courage with

> time. It is so hard

> > but knowing my mom was and still is my crutch makes it all a lil

> better.

> > Hugs to you both and no matter what hang tight and hang tough!

> > Donna

> >

> >

> >

[Guest guest]

Oh, , that is terrible! I totally understand the frustration with

the insurance company. My husband has had severe GERD for years. He's had

2 EGD's, and tried every drug out there. Finally, he has been very well

controlled with Prevacid for about 3 years. Then, last year, the

insurance company decided that they just were not going to cover Prevacid

any longer. So they refused to pay for it. We fought them on it, and they

briefly allowed him to get it, but then we were forced to have him try

other drugs. He is back to being miserable again, especially when he is

sleeping and will wake up with horrible stomach pain. I told the

insurance company that they were going to spend more money in the long

run by doing this to him, since I think we are getting to the point that

he's going to have to go back to the GI, and that usually means going on

and having another EGD. They simply didn't care. It is so maddening how

short-sighted these insurance companies are. They want to save money

immediately, but usually spend far more money denying care in the long

run.

I sure hope that Aundrea gets better...I hope that the Zantac will

finally kick in and she' ll be doing fine!

I know that you'll keep us posted.

and Rob 17 Spondy (who is filling out his college apps! : )

On Wed, 27 Sep 2006 05:27:28 -0000 " sonia1md " <sonia1md@...>

writes:

Hi ,

thanks for the prayers. Yes I defiantely plan on moving onto a gi

doc. Our insurance requires that she fail 2 drugs first before

moving on to anything else (more expensive drugs) She has 2 more

weeks to go with the Zantac and then I will return to the ped and

get the gi referral unless of course the problem goes away! :-)

(Aundrea 11 systemic jra/gerd)-

-- In , snooksmama@... wrote:

>

> :

> Just wanted to chime in with thoughts and prayers for Aundrea. I

am so

> sorry that the GERD is still going strong. Have you considered

seeing a

> GI specialist yet??

> and Rob 17 Spondy

>

> On Tue, 26 Sep 2006 16:26:03 -0000 " sonia1md " <sonia1md@...>

> writes:

> Donna,

>

> You are right in that for Aundrea the dark clouds only last during

> her most miserable moments. As soon as the pain lifts she is right

> back to being a bubbly, goofy 11 year old.

>

> It just hurts this mama's heart to hear her sadness even if its

> brief...But she is doing better today and like you said the sun

will

> shine thru the clouds.

>

> (aundrea 11 systemic jra/gerd)

>

>

> >

> > Big hugs ! My heart ached to read what Aundrea wrote and

how

> do I

> > relate. This disease sucks and just as I said to Helen about

Nick.

> It is ok to

> > hate it, it is ok to cry and ok to have bad days. It is ok to

have

> friends who

> > say they wish they had it, and it shows such courage to say you

> wish they could

> > BUT only long enough to get a good dose of understanding. There

> are bad days

> > and there are good days. There are days of hope and days of

> despair. There

> > are days of dread and there are days of fun. Sometimes these

days

> may be only

> > minutes or hours but as a JRA adult who has dealt with all

> emotion

> > imaginable, like we must hang tight for the sun behind

> the clouds. There are

> > still many days I wish I did not have this crap. Friday morning

I

> could not

> > walk. I could not stand and it was taking all I had to see my

son

> out the door

> > and off to school He said Friday evening, " mom, I have never

seen

> you cry so

> > bad or hurt so much, I was scared " . My heart broke not for me,

> but for him.

> > Just as a moms heart does for their child my heart was crying,

it

> was angry,

> > and all I could do was tell my son I love him, we are tough and

> we will win!

> > Aundrea has a wonderful, caring, supportive and loving mom. She

> is strong

> > young woman and will gain even more strength and courage with

> time. It is so hard

> > but knowing my mom was and still is my crutch makes it all a lil

> better.

> > Hugs to you both and no matter what hang tight and hang tough!

> > Donna

> >

> >

> >

[Guest guest]

To all of us Mom's and Dad's.

I have been down the road most are just starting on. Some here they

have been where I am now and are ahead of me.

It saddens me to know all of our kid's suffer with Pain and discomfort

due to this disease we call JRA and related illnesses.

As a Parent I always want what is best for my child as each do. I want

her to be the best she can be. Live her dream.

As JRA entered our life years ago. It shattered some Hope's and Dreams

we had. We thought this Disease would devastate 's life. Has it?

No.......As I seen through the JRA Vet's eye's nothing can take this from you

as

you have to battle harder to make it. You also have to lean on those around

you. Learn from those who have been down the road before. But there's a way to

make those dreams come true. When you work harder to succeed to your Dream it

sure feels a lot better. You can sit back and say I did it and I didn't let

a disease like JRA pull me down long.

and all who are going through Heart breaking times with your

child. I know these kid's have the I am ok syndrome. Even though they say that

just take time and talk with them. As you will see it does help. There's going

to be day's where they snap your head off. But don't get upset. Both take a

time out. Think of better day's. If you can sit down with your child. Ask the

child what they would like to do. What they want to be. Sometimes this will

trigger them to talk what is inside out to you. Experience the child in

yourself.

I had the snapping from not just once oh she would snap my head

off alot. I also told her I love you sweetie and I wish I could take the way

you feel away from you. But I can't . I can though help you understand and

you help me understand different way to put that fustration to better use. So

we would think of thing's. Shoot she likes Music let's listen to music. Then I

would act up with dancing funny to a song. Ok I am a big kid. I remember the

time we were in a car accident. Donna said expect to be more sore

the next day. Donna was right. could barely walk for a few week's. But

I had someone who I could call and see what to expect. Well was bent

over. barely making it. She said Ma why me. Why did that woman hit us? Was it

just so she could make me hurt more? I said no baby. She didn't know you had

this problem. But we will handle it. Well the way was walking was so

much like my mom. I said now dang it your making me laugh. She said

why? lolol. I said dang I can tell you have your grandma's genes in you. Her

comment was well Ma now I know how Nitnu felt. I said yes so straight up young

lady. Well the next morning she was still scooting along. By afternoon. She

had straightened up some more. Now looked like she had gotten stuck

in a chair and was walking in the position. But that afternoon she had

straighten up. We both got to talking and thinking about Nitnu. I said now show

me

how that walk is. I didn't mean for her to end up back as she was.

But dang I said now straighten back up. said ummm easy for you to

say MOM. Now I can't and I was doing so good. She sat down and was upset at

being so sore and the Pain was not letting up. Anyway she got better. Today

has been doing good. She can look back and say I remember how bad the

pain was but I also know I can make it through it.

JRA is heartbreaking. You parent's remember this. There will be better

day's. Never allow your child to forget their dreams. As the Hope and Faith of

t

hose Dreams will strengthen your child. To push harder. Ypu can do it let's

try. Trying never hurt anyone. If you fail try again.

Robbin

[Guest guest]

Aundrea's email breaks my heart! I think more than seeing my child in

pain, worries over medications and disease long-term, I hate how it

zaps the happiness right out of . She is fairly controlled now,

and she is truly amazing me this year in school. She has gotten so

outgoing and seems so happy. Last year, she was struggling with ankle

and hip pain, and she had a very hard time in school. I think we all

forgot her true personality b/c the flare went on so long.

It is hard to be happy when you feel miserable. If I could pick just

one accomplishment for my kids it would be that they live happy lives.

I truly hope Aundrea feels well soon. Could it be the MTX bothering

her stomach? I hope you get to try the new stomach med soon.

Insurance companies are truly frustrating!

Take care.

Sophie

[Guest guest]

Thanks Sophie...Your right about when your child gets thru a flare

and you see their true personality emerge. Aundrea becomes almost

euphoric for a few days after she has gone from feeling miserable to

feeling good.

I hope its not the mtx causing problems. They started the week she

was put on Aleve. We discontinued the Aleve and started Mtx. the

stomach problems worsened.

The vomiting on Sat night and stomach cramps could have been caused

by mtx. She had her shot that night and those were the problems

that she had before that caused us to discontinue the drug last

Dec. Within 4 months she began to flare again.

I just marked the date on my calendar for Oct 2nd. She will have

been on Zantac for 3 weeks. So if she is still having troubles next

week then I plan to call and get the referral to the GI specialist.

Thanks again and I am thrilled that is having a good school

year!

(Aundrea 11 systemic jra/GERD)

-- In , " slevindoski " <slevindoski@...>

wrote:

>

> Aundrea's email breaks my heart! I think more than seeing my

child in

> pain, worries over medications and disease long-term, I hate how

it

> zaps the happiness right out of . She is fairly controlled

now,

> and she is truly amazing me this year in school. She has gotten

so

> outgoing and seems so happy. Last year, she was struggling with

ankle

> and hip pain, and she had a very hard time in school. I think we

all

> forgot her true personality b/c the flare went on so long.

>

> It is hard to be happy when you feel miserable. If I could pick

just

> one accomplishment for my kids it would be that they live happy

lives.

> I truly hope Aundrea feels well soon. Could it be the MTX

bothering

> her stomach? I hope you get to try the new stomach med soon.

> Insurance companies are truly frustrating!

>

> Take care.

> Sophie

>

[Guest guest]

- Drea is amazing. Her email brought me to so many tears. I wish we

could all take away that pain. Tell her we are proud of her and to keep

fighting!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

Thanks Alia,

She has been better the past couple days. I am praying that things

go well this weekend with the mtx and that it wasn't the reason for

her night of vomiting and stomach cramps!

I have started taking care of a 15 year old quadrapalegic boy with

C.P. I am doing this in the afternoon/evenings to help supplement

our income while our practice grows. Anyway, its so sweet to see

how compassionate Aundrea is with . She always runs in to

say hi to him and she will help lift his head when it falls over.

My 14 year old son is also really good with him. If nothing else

good comes from jra, I am certain that it brings out the finest

quality of compassion in our children!

Blessings,

(aundrea 11 systemic jra/gerd)

>

> - Drea is amazing. Her email brought me to so many tears. I

wish we

> could all take away that pain. Tell her we are proud of her and to

keep

> fighting!

>

> Alia and Caroline, age 4, poly and uveitis

>

>

>

[Guest guest]

-,

Gosh, I could just hear the pain in Drea's heart as I read her

email, as I saw the same pain on Nicks face last week. These kids

have so much to deal with that im sure it gets to them once in

awhile. They sure bounce back quickly and are back to their happy

selves in no time. I am aways amazed at their fortitude and grace.

All we can do as moms in let them know we care, understand and will

always be there for them.

Give Drea a hug from us..

Hugs Helen and (9,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Thanks Alia,

>

> She has been better the past couple days. I am praying that

things

> go well this weekend with the mtx and that it wasn't the reason

for

> her night of vomiting and stomach cramps!

>

> I have started taking care of a 15 year old quadrapalegic boy with

> C.P. I am doing this in the afternoon/evenings to help supplement

> our income while our practice grows. Anyway, its so sweet to see

> how compassionate Aundrea is with . She always runs in to

> say hi to him and she will help lift his head when it falls over.

> My 14 year old son is also really good with him. If nothing else

> good comes from jra, I am certain that it brings out the finest

> quality of compassion in our children!

>

> Blessings,

> (aundrea 11 systemic jra/gerd)

>

>

>

>

> >

> > - Drea is amazing. Her email brought me to so many tears.

I

> wish we

> > could all take away that pain. Tell her we are proud of her and

to

> keep

> > fighting!

> >

> > Alia and Caroline, age 4, poly and uveitis

> >

> >

> >