I just have to share about my day

[Guest guest]

I know I am going to ramble on this one, but you guys are the only ones

that are going to get where I am coming from so here goes.

Update: Aundrea has been doing horrible. A few good days here in

there, just long enough to make you think the worst is over and then

bam right back into a flare. Her pain is increasing and she is now

having more inflammation. Her elbows, wrists, knees and ankles are the

major trouble makers and they crack and pop which causes her very sharp

pain and will linger around for quite awhile.

She has missed 7 weeks of school and spent the majority of spring break

in her pj's going from bed to couch. She is having major cold and hot

flashes. During a cold spell she will literally pile the blankets on

top of herself while the rest of us are in t-shirts and shorts.

When she has a hot spell she will go and soak in a cold bath.

She has the butterfly rash all the time across her face and has the

systemic looking rash show up on her arms and chest.

Research: So, I have been researching this whole time trying to figure

out what dr to take her to when she gets approved for insurance. I

looked up Mayos Hospital in Phoenix but they don't really treat

rheumatoid conditions there.

I looked up infectious disease and genetic testing doctors, but it

doesn't seem to really fit with aundrea's diagnosis. So everything

landed back to rheumatolgoy.

The Miracel: I called the pediatric rheumatologist in Phoenix today,

thinking what a miracle it would be if he could see her during a

flare. I was told she might be able to work her in the end of April.

I get a call back an hour later saying that there was a cancellation

for Tomorrow! They just need me to verify insurance info and they will

give her the spot. I have no insurance cards yet so I tell her I will

call right back.

the insurance nightmare: I call the insurance comp. only to figure out

that she isn't covered til April 1st. If she is seen prior to that

date it will show up as prexisting condition and then they will do a

write and none of her jra visits or testing will be covered for at

least one year.

I call my CEO, we quick write and fax a letter changing the effective

date of insurance eligibility. Within one hour the insurance company

through a miracle with the employee benefits person has managed to make

the change in the system and it reflects a coverage date of March 1.

Happy Day: I call the rheumy office back and tell them her insurance

info and we get out appt.

So now I am just hoping for some answers. Aundrea wants out of pain

and she is still saying no shots.

I will update you on the rest of the story tomorrow.

Thanks for enduring my indredibly long post! :-)

(Aundrea 12 systemic jra/gerd)

[Guest guest]

Oh, , this is indeed a miracle...everything has fallen into place...I will

be praying that the rash is THERE tomorrow and that all is seen! I hope also for

a wonderful, listening ped and answers, answers, answers...my gosh, I don't know

if I will sleep tonight I'm so excited for you!!!!! I'll have to try and sneak

check my email at work tomorrow...what time is your appt??

Prayers!

and Rob 18 JAS

I just have to share about my day

> I know I am going to ramble on this one, but you guys are the

> only ones

> that are going to get where I am coming from so here goes.

>

> Update: Aundrea has been doing horrible. A few good days

> here in

> there, just long enough to make you think the worst is over and

> then

> bam right back into a flare. Her pain is increasing and

> she is now

> having more inflammation. Her elbows, wrists, knees and

> ankles are the

> major trouble makers and they crack and pop which causes her

> very sharp

> pain and will linger around for quite awhile.

>

> She has missed 7 weeks of school and spent the majority of

> spring break

> in her pj's going from bed to couch. She is having major

> cold and hot

> flashes. During a cold spell she will literally pile the

> blankets on

> top of herself while the rest of us are in t-shirts and shorts.

>

> When she has a hot spell she will go and soak in a cold bath.

>

> She has the butterfly rash all the time across her face and has

> the

> systemic looking rash show up on her arms and chest.

>

> Research: So, I have been researching this whole time trying to

> figure

> out what dr to take her to when she gets approved for

> insurance. I

> looked up Mayos Hospital in Phoenix but they don't really treat

> rheumatoid conditions there.

> I looked up infectious disease and genetic testing doctors, but

> it

> doesn't seem to really fit with aundrea's diagnosis. So

> everything

> landed back to rheumatolgoy.

>

> The Miracel: I called the pediatric rheumatologist in Phoenix

> today,

> thinking what a miracle it would be if he could see her during a

> flare. I was told she might be able to work her in the end

> of April.

> I get a call back an hour later saying that there was a

> cancellation

> for Tomorrow! They just need me to verify insurance info

> and they will

> give her the spot. I have no insurance cards yet so I tell

> her I will

> call right back.

>

> the insurance nightmare: I call the insurance comp. only

> to figure out

> that she isn't covered til April 1st. If she is seen prior

> to that

> date it will show up as prexisting condition and then they will

> do a

> write and none of her jra visits or testing will be covered for

> at

> least one year.

>

> I call my CEO, we quick write and fax a letter changing the

> effective

> date of insurance eligibility. Within one hour the

> insurance company

> through a miracle with the employee benefits person has managed

> to make

> the change in the system and it reflects a coverage date of

> March 1.

>

> Happy Day: I call the rheumy office back and tell them her

> insurance

> info and we get out appt.

>

> So now I am just hoping for some answers. Aundrea wants

> out of pain

> and she is still saying no shots.

>

> I will update you on the rest of the story tomorrow.

>

> Thanks for enduring my indredibly long post! :-)

>

> (Aundrea 12 systemic jra/gerd)

>

>

[Guest guest]

, you always make me smile. I feel a bit drained and while I

should just be happy at the miracles that took place I also feel

exhausted and bit anxious about tomorrow.

On top of everything else Aundrea has recently 'become a woman " and

now she is dealing with severe ovulation pain. (something she has

inherited from dear ole mom) I never give her Ibuprofen due to her

reaction with GERD but I felt so sorry for her that I gave her an 800

mg which is what I always take to help dull the pain.

Our appointment is at 1:00. I will send out an update after we get

home. I plan to be stubborn and not to let him exit the door until

we have answers or a referral to someone who will help us. If he

can't help us I am going to ask for a referral to Mayo Hospital in

rochester. They are the ones that helped my sister when noone else

could figure out that she had chrones disease.

I know Drea is against all shots but if that becomes the needed

option then I am going to tell him to write me a script to have it

done at a clinic. I just can't handle going through that torment and

need someone else to be the bad guy. She would do better for

strangers.

Thank you for your prayers. I appreciate everyone on this group so

much. It's been a really hard journey. But I know that everyone

hear understands.

thanks,

sonia (drea 12 systemic jra/gerd)---

In , and Schulz <snooksmama@...>

wrote:

>

> Oh, , this is indeed a miracle...everything has fallen into

place...I will be praying that the rash is THERE tomorrow and that

all is seen! I hope also for a wonderful, listening ped and answers,

answers, answers...my gosh, I don't know if I will sleep tonight I'm

so excited for you!!!!! I'll have to try and sneak check my email at

work tomorrow...what time is your appt??

> Prayers!

> and Rob 18 JAS

>

> I just have to share about my day

>

>

> > I know I am going to ramble on this one, but you guys are the

> > only ones

> > that are going to get where I am coming from so here goes.

> >

> > Update: Aundrea has been doing horrible. A few good days

> > here in

> > there, just long enough to make you think the worst is over and

> > then

> > bam right back into a flare. Her pain is increasing and

> > she is now

> > having more inflammation. Her elbows, wrists, knees and

> > ankles are the

> > major trouble makers and they crack and pop which causes her

> > very sharp

> > pain and will linger around for quite awhile.

> >

> > She has missed 7 weeks of school and spent the majority of

> > spring break

> > in her pj's going from bed to couch. She is having major

> > cold and hot

> > flashes. During a cold spell she will literally pile the

> > blankets on

> > top of herself while the rest of us are in t-shirts and shorts.

> >

> > When she has a hot spell she will go and soak in a cold bath.

> >

> > She has the butterfly rash all the time across her face and has

> > the

> > systemic looking rash show up on her arms and chest.

> >

> > Research: So, I have been researching this whole time trying to

> > figure

> > out what dr to take her to when she gets approved for

> > insurance. I

> > looked up Mayos Hospital in Phoenix but they don't really treat

> > rheumatoid conditions there.

> > I looked up infectious disease and genetic testing doctors, but

> > it

> > doesn't seem to really fit with aundrea's diagnosis. So

> > everything

> > landed back to rheumatolgoy.

> >

> > The Miracel: I called the pediatric rheumatologist in Phoenix

> > today,

> > thinking what a miracle it would be if he could see her during a

> > flare. I was told she might be able to work her in the end

> > of April.

> > I get a call back an hour later saying that there was a

> > cancellation

> > for Tomorrow! They just need me to verify insurance info

> > and they will

> > give her the spot. I have no insurance cards yet so I tell

> > her I will

> > call right back.

> >

> > the insurance nightmare: I call the insurance comp. only

> > to figure out

> > that she isn't covered til April 1st. If she is seen prior

> > to that

> > date it will show up as prexisting condition and then they will

> > do a

> > write and none of her jra visits or testing will be covered for

> > at

> > least one year.

> >

> > I call my CEO, we quick write and fax a letter changing the

> > effective

> > date of insurance eligibility. Within one hour the

> > insurance company

> > through a miracle with the employee benefits person has managed

> > to make

> > the change in the system and it reflects a coverage date of

> > March 1.

> >

> > Happy Day: I call the rheumy office back and tell them her

> > insurance

> > info and we get out appt.

> >

> > So now I am just hoping for some answers. Aundrea wants

> > out of pain

> > and she is still saying no shots.

> >

> > I will update you on the rest of the story tomorrow.

> >

> > Thanks for enduring my indredibly long post! :-)

> >

> > (Aundrea 12 systemic jra/gerd)

> >

> >

>

>

>

[Guest guest]

:

I am so excited for you. I am going to pray and pray that you get answers or at

least a good plan of action! You have totally made my day! Not that I want

Drea to be hurting, but I'm so hoping her inflammation and rash are there for

the doctor to see tomorrow. It's so frustrating to have them flaring at home

and waiting forever for an appointment only to have them feeling well that day.

I think we are leaning towards Mayo. I know Cincy is an amazing hospital, but

I'm still thinking all of Hannah's issues are connected and that is what they

are experts in, looking at everything.

I'm also glad the girls have been connecting. It sounds like they are sharing

some things with each other that maybe they are not sharing with their old moms,

which is a good thing. I'm all for anyone for Hannah to talk to who

understands.

I don't know how I'm going to concentrate at work tomorrow, I'll be checking

email throughout the day!

Beth & Hannah, 11,unspecified arthrits; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

I just have to share about my day

I know I am going to ramble on this one, but you guys are the only ones

that are going to get where I am coming from so here goes.

Update: Aundrea has been doing horrible. A few good days here in

there, just long enough to make you think the worst is over and then

bam right back into a flare. Her pain is increasing and she is now

having more inflammation. Her elbows, wrists, knees and ankles are the

major trouble makers and they crack and pop which causes her very sharp

pain and will linger around for quite awhile.

She has missed 7 weeks of school and spent the majority of spring break

in her pj's going from bed to couch. She is having major cold and hot

flashes. During a cold spell she will literally pile the blankets on

top of herself while the rest of us are in t-shirts and shorts.

When she has a hot spell she will go and soak in a cold bath.

She has the butterfly rash all the time across her face and has the

systemic looking rash show up on her arms and chest.

Research: So, I have been researching this whole time trying to figure

out what dr to take her to when she gets approved for insurance. I

looked up Mayos Hospital in Phoenix but they don't really treat

rheumatoid conditions there.

I looked up infectious disease and genetic testing doctors, but it

doesn't seem to really fit with aundrea's diagnosis. So everything

landed back to rheumatolgoy.

The Miracel: I called the pediatric rheumatologist in Phoenix today,

thinking what a miracle it would be if he could see her during a

flare. I was told she might be able to work her in the end of April.

I get a call back an hour later saying that there was a cancellation

for Tomorrow! They just need me to verify insurance info and they will

give her the spot. I have no insurance cards yet so I tell her I will

call right back.

the insurance nightmare: I call the insurance comp. only to figure out

that she isn't covered til April 1st. If she is seen prior to that

date it will show up as prexisting condition and then they will do a

write and none of her jra visits or testing will be covered for at

least one year.

I call my CEO, we quick write and fax a letter changing the effective

date of insurance eligibility. Within one hour the insurance company

through a miracle with the employee benefits person has managed to make

the change in the system and it reflects a coverage date of March 1.

Happy Day: I call the rheumy office back and tell them her insurance

info and we get out appt.

So now I am just hoping for some answers. Aundrea wants out of pain

and she is still saying no shots.

I will update you on the rest of the story tomorrow.

Thanks for enduring my indredibly long post! :-)

(Aundrea 12 systemic jra/gerd)

[Guest guest]

That is so wonderful!!!!!!!

Keep us posted.

On Wed, 26 Mar 2008 00:22:26 -0000 " sonia1md " <sonia1md@...>

writes:

> I know I am going to ramble on this one, but you guys are the only

> ones

> that are going to get where I am coming from so here goes.

>

> Update: Aundrea has been doing horrible. A few good days here in

> there, just long enough to make you think the worst is over and then

>

> bam right back into a flare. Her pain is increasing and she is now

>

> having more inflammation. Her elbows, wrists, knees and ankles are

> the

> major trouble makers and they crack and pop which causes her very

> sharp

> pain and will linger around for quite awhile.

>

> She has missed 7 weeks of school and spent the majority of spring

> break

> in her pj's going from bed to couch. She is having major cold and

> hot

> flashes. During a cold spell she will literally pile the blankets

> on

> top of herself while the rest of us are in t-shirts and shorts.

>

> When she has a hot spell she will go and soak in a cold bath.

>

> She has the butterfly rash all the time across her face and has the

>

> systemic looking rash show up on her arms and chest.

>

> Research: So, I have been researching this whole time trying to

> figure

> out what dr to take her to when she gets approved for insurance. I

>

> looked up Mayos Hospital in Phoenix but they don't really treat

> rheumatoid conditions there.

> I looked up infectious disease and genetic testing doctors, but it

> doesn't seem to really fit with aundrea's diagnosis. So everything

>

> landed back to rheumatolgoy.

>

> The Miracel: I called the pediatric rheumatologist in Phoenix today,

>

> thinking what a miracle it would be if he could see her during a

> flare. I was told she might be able to work her in the end of

> April.

> I get a call back an hour later saying that there was a cancellation

>

> for Tomorrow! They just need me to verify insurance info and they

> will

> give her the spot. I have no insurance cards yet so I tell her I

> will

> call right back.

>

> the insurance nightmare: I call the insurance comp. only to figure

> out

> that she isn't covered til April 1st. If she is seen prior to that

>

> date it will show up as prexisting condition and then they will do a

>

> write and none of her jra visits or testing will be covered for at

> least one year.

>

> I call my CEO, we quick write and fax a letter changing the

> effective

> date of insurance eligibility. Within one hour the insurance

> company

> through a miracle with the employee benefits person has managed to

> make

> the change in the system and it reflects a coverage date of March

> 1.

>

> Happy Day: I call the rheumy office back and tell them her insurance

>

> info and we get out appt.

>

> So now I am just hoping for some answers. Aundrea wants out of pain

>

> and she is still saying no shots.

>

> I will update you on the rest of the story tomorrow.

>

> Thanks for enduring my indredibly long post! :-)

>

> (Aundrea 12 systemic jra/gerd)

>

>

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

>

>

[Guest guest]

Hi ,

My prayers will be with you and Aundrea tomorrow. (n, 19,

systemic)

On Mar 25, 2008, at 5:22 PM, sonia1md wrote:

> I know I am going to ramble on this one, but you guys are the only

> ones

> that are going to get where I am coming from so here goes.

>

> Update: Aundrea has been doing horrible. A few good days here in

> there, just long enough to make you think the worst is over and then

> bam right back into a flare. Her pain is increasing and she is now

> having more inflammation. Her elbows, wrists, knees and ankles are the

> major trouble makers and they crack and pop which causes her very

> sharp

> pain and will linger around for quite awhile.

>

> She has missed 7 weeks of school and spent the majority of spring

> break

> in her pj's going from bed to couch. She is having major cold and hot

> flashes. During a cold spell she will literally pile the blankets on

> top of herself while the rest of us are in t-shirts and shorts.

>

> When she has a hot spell she will go and soak in a cold bath.

>

> She has the butterfly rash all the time across her face and has the

> systemic looking rash show up on her arms and chest.

>

> Research: So, I have been researching this whole time trying to figure

> out what dr to take her to when she gets approved for insurance. I

> looked up Mayos Hospital in Phoenix but they don't really treat

> rheumatoid conditions there.

> I looked up infectious disease and genetic testing doctors, but it

> doesn't seem to really fit with aundrea's diagnosis. So everything

> landed back to rheumatolgoy.

>

> The Miracel: I called the pediatric rheumatologist in Phoenix today,

> thinking what a miracle it would be if he could see her during a

> flare. I was told she might be able to work her in the end of April.

> I get a call back an hour later saying that there was a cancellation

> for Tomorrow! They just need me to verify insurance info and they will

> give her the spot. I have no insurance cards yet so I tell her I will

> call right back.

>

> the insurance nightmare: I call the insurance comp. only to figure out

> that she isn't covered til April 1st. If she is seen prior to that

> date it will show up as prexisting condition and then they will do a

> write and none of her jra visits or testing will be covered for at

> least one year.

>

> I call my CEO, we quick write and fax a letter changing the effective

> date of insurance eligibility. Within one hour the insurance company

> through a miracle with the employee benefits person has managed to

> make

> the change in the system and it reflects a coverage date of March 1.

>

> Happy Day: I call the rheumy office back and tell them her insurance

> info and we get out appt.

>

> So now I am just hoping for some answers. Aundrea wants out of pain

> and she is still saying no shots.

>

> I will update you on the rest of the story tomorrow.

>

> Thanks for enduring my indredibly long post! :-)

>

> (Aundrea 12 systemic jra/gerd)

>

>

>

[Guest guest]

,

I am so excited for you and for Aundrea. I hope you get some answers and find a

way to help her to feel better quickly. I call this a tender mercies day. Please

share what you find out. I hope this is finally the answers you need.

e, mom to " joe " 21 poly/lupus

sonia1md <sonia1md@...> wrote: I know I am

going to ramble on this one, but you guys are the only ones

that are going to get where I am coming from so here goes.

Update: Aundrea has been doing horrible. A few good days here in

there, just long enough to make you think the worst is over and then

bam right back into a flare. Her pain is increasing and she is now

having more inflammation. Her elbows, wrists, knees and ankles are the

major trouble makers and they crack and pop which causes her very sharp

pain and will linger around for quite awhile.

She has missed 7 weeks of school and spent the majority of spring break

in her pj's going from bed to couch. She is having major cold and hot

flashes. During a cold spell she will literally pile the blankets on

top of herself while the rest of us are in t-shirts and shorts.

When she has a hot spell she will go and soak in a cold bath.

She has the butterfly rash all the time across her face and has the

systemic looking rash show up on her arms and chest.

Research: So, I have been researching this whole time trying to figure

out what dr to take her to when she gets approved for insurance. I

looked up Mayos Hospital in Phoenix but they don't really treat

rheumatoid conditions there.

I looked up infectious disease and genetic testing doctors, but it

doesn't seem to really fit with aundrea's diagnosis. So everything

landed back to rheumatolgoy.

The Miracel: I called the pediatric rheumatologist in Phoenix today,

thinking what a miracle it would be if he could see her during a

flare. I was told she might be able to work her in the end of April.

I get a call back an hour later saying that there was a cancellation

for Tomorrow! They just need me to verify insurance info and they will

give her the spot. I have no insurance cards yet so I tell her I will

call right back.

the insurance nightmare: I call the insurance comp. only to figure out

that she isn't covered til April 1st. If she is seen prior to that

date it will show up as prexisting condition and then they will do a

write and none of her jra visits or testing will be covered for at

least one year.

I call my CEO, we quick write and fax a letter changing the effective

date of insurance eligibility. Within one hour the insurance company

through a miracle with the employee benefits person has managed to make

the change in the system and it reflects a coverage date of March 1.

Happy Day: I call the rheumy office back and tell them her insurance

info and we get out appt.

So now I am just hoping for some answers. Aundrea wants out of pain

and she is still saying no shots.

I will update you on the rest of the story tomorrow.

Thanks for enduring my indredibly long post! :-)

(Aundrea 12 systemic jra/gerd)

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

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hi ,

I read your Post and sweetie I have been there. I am hoping that Dr can

see what Aundrea is going through. has been down that road several

times. Your so right when you said that you think the flare is going away and

bam it gets worse.

Sometimes I felt like the Drs thought I was the nut case even though

told them how she was feeling. You could see the rash as well.

The rash is called the T rash or butterfly rash and has it again

on her face as I type. That comes and goes. covers it up with make up

now. She will wear long sleeves if the rash is on her arms.

The Cold and Hot flashes are something else though. I honestly think it

is similar to a woman going into Menopause. Hot one minute Cold the next.

So far with all I can do is Document these thing's. I also think

that this JA is more than what a Dr says or knows about. Sometimes I think

Drs do not understand the impact of everything.

Let me know what the outcome is to seeing the Dr ok. Hoping the School

understands this issue and will be easy going with it. If not and they want

to start something about the absentees. Contact the Special Education

Department and ask for Home Bound Services and tell them what is going on. They

can

monitor the situation and help. Some one in the Educational Department can

help.

Robbin

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

Oh thank God, what a miracle! How wonderful that they changed that date.

Not sure what kind of insurance you have, but with our PPO we do not

need a referral, perhaps yours will be the same and you can go where you

want. Check it out, and please let us know how all this goes. Saying

lots of prayers for you all, Michele ( 20, spondy)

________________________________

From: [mailto: ] On

Behalf Of sonia1md

Sent: Tuesday, March 25, 2008 7:22 PM

Subject: I just have to share about my day

I know I am going to ramble on this one, but you guys are the only ones

that are going to get where I am coming from so here goes.

Update: Aundrea has been doing horrible. A few good days here in

there, just long enough to make you think the worst is over and then

bam right back into a flare. Her pain is increasing and she is now

having more inflammation. Her elbows, wrists, knees and ankles are the

major trouble makers and they crack and pop which causes her very sharp

pain and will linger around for quite awhile.

She has missed 7 weeks of school and spent the majority of spring break

in her pj's going from bed to couch. She is having major cold and hot

flashes. During a cold spell she will literally pile the blankets on

top of herself while the rest of us are in t-shirts and shorts.

When she has a hot spell she will go and soak in a cold bath.

She has the butterfly rash all the time across her face and has the

systemic looking rash show up on her arms and chest.

Research: So, I have been researching this whole time trying to figure

out what dr to take her to when she gets approved for insurance. I

looked up Mayos Hospital in Phoenix but they don't really treat

rheumatoid conditions there.

I looked up infectious disease and genetic testing doctors, but it

doesn't seem to really fit with aundrea's diagnosis. So everything

landed back to rheumatolgoy.

The Miracel: I called the pediatric rheumatologist in Phoenix today,

thinking what a miracle it would be if he could see her during a

flare. I was told she might be able to work her in the end of April.

I get a call back an hour later saying that there was a cancellation

for Tomorrow! They just need me to verify insurance info and they will

give her the spot. I have no insurance cards yet so I tell her I will

call right back.

the insurance nightmare: I call the insurance comp. only to figure out

that she isn't covered til April 1st. If she is seen prior to that

date it will show up as prexisting condition and then they will do a

write and none of her jra visits or testing will be covered for at

least one year.

I call my CEO, we quick write and fax a letter changing the effective

date of insurance eligibility. Within one hour the insurance company

through a miracle with the employee benefits person has managed to make

the change in the system and it reflects a coverage date of March 1.

Happy Day: I call the rheumy office back and tell them her insurance

info and we get out appt.

So now I am just hoping for some answers. Aundrea wants out of pain

and she is still saying no shots.

I will update you on the rest of the story tomorrow.

Thanks for enduring my indredibly long post! :-)

(Aundrea 12 systemic jra/gerd)