update

[Guest guest]

LoL I have three enbrel 50mg shots in my fridge too, I just dont know what

to do with it

[Guest guest]

Hi Helen,

I'm as guilty as you, or maybe worse, for not reading much these last

few months. Sometimes, you just need a break from it all.

I'm sorry to hear that Nick is just not 100% with Enbrel. I pray that

remicade does a better job and he's moving in the right direction

again soon. If only you could get a DNA sample done for Nick and the

magic drug for him would just pop out at you (like the doc at the

conference was talking about). I hope things go well with remicade.

Is it today he gets his first infusion?

Stacia and Hunter 9 systemic, uveitis

[Guest guest]

--Hi Stacia..

its good to hear from you!!!.. yea, Nicks 1st remicade infusion is

this afternoon at 2pm. I have to admit I am a little nervous. Nick

seems to be taking it all in his stride. Ill pick him up early from

school and take him to pick out a new dvd to watch while we are

there and then we will do lunch before heading to the hospital. I

wish the enbrel had worked, it was great in the begining but was

slowly stopping being so effective. I now have $1500 worth of enbrel

still in my fridge. I WILL NOT throw it away, so I will have to find

someone to give it to.

I heard from the genetists office this week, they should be able to

see by early spring!!!! LOL

Hows Hunter doing these days???

hugs Helen and (8,systemic)

- In , " staciar101 " <staciar@c...> wrote:

>

> Hi Helen,

>

> I'm as guilty as you, or maybe worse, for not reading much these

last

> few months. Sometimes, you just need a break from it all.

>

> I'm sorry to hear that Nick is just not 100% with Enbrel. I pray

that

> remicade does a better job and he's moving in the right direction

> again soon. If only you could get a DNA sample done for Nick and

the

> magic drug for him would just pop out at you (like the doc at the

> conference was talking about). I hope things go well with

remicade.

> Is it today he gets his first infusion?

>

> Stacia and Hunter 9 systemic, uveitis

>

[Guest guest]

Best of luck for smooth sailing this afternoon!!!! What dvd are you

going to watch?

Hunter pulled out of his summer flare with out any further episode.

His last bloodwork a couple weeks ago was back to normal and his eye

exam yesterday was also uneventful, thankfully. Actually, most of the

asterisks are gone on his bloodwork except for the anemia. We'll do

more thorough anemia testing at next blood draw. Thanks for asking

and I hope to be more active here for a while.

I'm sure some one here will be willing to take that enbrel off your

hands for you!!!

Stacia and Hunter 9 systemic, uveitis

[Guest guest]

Stacia - I am so glad to hear that Hunter is doing better! What

wonderful news!!!

Alia and Caroline, age 3, poly and uveitis

________________________________

From: [mailto: ] On

Behalf Of staciar101

Sent: Friday, October 14, 2005 11:35 AM

Subject: Re: Update

Best of luck for smooth sailing this afternoon!!!! What dvd are you

going to watch?

Hunter pulled out of his summer flare with out any further episode.

His last bloodwork a couple weeks ago was back to normal and his eye

exam yesterday was also uneventful, thankfully. Actually, most of the

asterisks are gone on his bloodwork except for the anemia. We'll do

more thorough anemia testing at next blood draw. Thanks for asking

and I hope to be more active here for a while.

I'm sure some one here will be willing to take that enbrel off your

hands for you!!!

Stacia and Hunter 9 systemic, uveitis

[Guest guest]

, I'm so glad that the surgery if over for Annika and now maybe you

and she, well the whole family will get some much needed rest and I wish you

well with hook up.

F., Kansas

Cochlear Implant

N24C 8/02

3G 10/02

Sensorineural hearing loss, late deafened

Update

> Okay, I am finally home for the night. So now can get an email out to

those of you who are wondering. Annika's surgery went fine on Friday

evening. We left our little girl in the surgery area about 3:25 and saw the

surgeon around 6:25-so basically 3 hours but I can't say for sure whether

she was in surgery that whole time(don't ask another confusing story but

believes it is just someone who didn't know what he was doing in

charge of informing families). Dr. Rimmel said everything went fine. He

was able to put the new one in and now the old will be sent in to be

dissected. The good news is that her right ear looks good. It was her ear

tube pulling out(we saw blood coming out of the ear on Wednesday) and they

did check and her eardrum is healthy so she is now without a tube on the

right ear. The implant is on the left so we will have to wait to see what

happens with that tube.

>

> The worst part was that Annika became pretty nauseated after surgery so by

Saturday a.m. when the resident came in she had not kept anything down at

that point. Which meant that we got to stay another night. I was okay with

this because really she just layed in bed and either watched TV or slept.

We were able to shut off the IV finally around supper time yesterday and she

woke up this morning and started to climb the walls!! Nothing was keeping

her in that bed and when Dad and her brother came to pick us up she was

ready to go!!!

>

> To say that this was an easy experience that would not be true. Annika

knew exactly where she was the minute we went back into the pre-op area. We

had to fight with her just to get the pj's on her. She refused to let them

take her vital signs and since they did not want to make her more upset she

did not get them done. I can tell you that there was no doubt from the

screams heard that she was very healthy at the time. She got to go to the

playroom and that was a good thing until they had to give her the little bit

of oral sedation so that Mom and Dad don't have to go back into the surgery

area with her. She was already feeling the effects of the dose when we put

her on the bed to be rolled into surgery. Of course here is Annika,

partially sedated and all, kicking her leg off of the bed and saying, " no,

no, no. " At least when they wheeled her off she wasn't crying but she was

still telling them she wasn't going with them. They did allow her to keep

her right processor on until they had her back in the surgery suite. I can

say that this probably helped a lot.

>

> Now Annika continued to be a non-compliant patient when it came to her

vital signs during her whole hospital stay. She was usually very good and

took her medicine without much fuss. Though one time yesterday I finally

told her that Dr. Rimmel really wanted her to take the medicine and then she

consented to take it. I don't know what pull Dr. Rimmel had at the time but

at that point I was taking what I could.

>

> Today she has continued to feel and act very much like her normal self.

The only thing that I noticed is that we were coming back from dropping off

a vehicle tonight and she was looking for her blanket. She had become very

attached to her blanket the last few days and must have started to miss it.

>

> Well, that is about it. She will have to go back and see the surgeon by

the end of this week or the beginning of next and then hookup will be in

about 3 weeks.

>

> Thanks to everyone for all the prayers and support. It is all over and

now we wait for hookup.

> Mom of 4

> Marcus 15

> 13

> Jon 11

> Annika 3

> Bilaterally implant 3/1/04

> Hookup 3/25/04

> re-implanted left side 10/28/05

> spastic diaplegic CP

>

>

[Guest guest]

Good news Deb! Glad you're feeling relief.

deb

GingerMomi@... wrote:

With all the problems I've been having since Tuesday night I decided to go

for an unfill today. The doctor is out of town until next week but the

physician's assistant decided to do a complete unfill and let things rest! What

a

relief! I have an appointment with the doctor on December 19th and if

everything

is okay he'll start filling again! She said he probably won't go quite as

high this time (2.2) but that's fine with me, I was always a little tight but I

dealt with it. On another great note, I lost 20 pounds since September's

fill! Thanks for all the support!

~Deb

[Guest guest]

Great that you feel better! But you might give your poor stomach more

chance to heal than just a couple weeks.

I'd suggest at least a month before you begin to refill very slowly -

and then only if you need fills. you want as small a fill as

possible, not the largest one you might be able to get away with. .

There is no rush to refill, and if you start before your stomach has

had a good rest, you 'll just have to go through this cycle again -

it's not uncommon. Just a suggestion1 Sandy R

>

> With all the problems I've been having since Tuesday night I

decided to go

> for an unfill today. The doctor is out of town until next week but

the

> physician's assistant decided to do a complete unfill and let

things rest! What a

> relief! I have an appointment with the doctor on December 19th and

if everything

> is okay he'll start filling again! She said he probably won't go

quite as

> high this time (2.2) but that's fine with me, I was always a little

tight but I

> dealt with it. On another great note, I lost 20 pounds since

September's

> fill! Thanks for all the support!

> ~Deb

>

>

>

[Guest guest]

Well congrats on the acceptance. Now you can pick and choose what school you

want. That's great news. Sorry to hear about the other stuff...that GI testing

crap is no fun at all. Been there and done that. I have a double system Kidney

and it's caused me many many problems in the past. Good luck with hun!

Lorilee

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

Ken 47 {PolyRA}

6 {Systemic JRA},

Kayla 15 {Healthy Thank God}

18 {Asthma}

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

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

From: Salvucci <lisa_salvucci@...>

I had an endoscopy today for the stomach problems and apparently I will

be going through all the GI testing I went through prior to the first

surgery (pH probe, monometry test, gastric emptying) because something

might have been damaged from the surgery or the paralysis that had I

already had in my GI might have worsened, I am truly not looking forward

to that. The arthritis hasn't been to hot either, I seem to be going

through a flare again. I don't see my rheumatologist until Feb 16th and

dont have my next Remicade infusion till Feb 17th. On a happier note I

found out this morning on the way to the hospital I found out that I was

accepted into Sac State University! So far I have gotten into three of

the five schools I applied..Only two left to hear from.

Lots of Love

[Guest guest]

Hi :

Sorry to hear you are not doing well:( I know how hard the whole GI testing

was for you before. I pray you get some answers and relief soon.

Congrats on Sac State! That is awesome news.............3 out of 5 so far.

You just might have to choose 1 out of 5! How wonderful for you to have

your choice.

Tke care.

Patty

[Guest guest]

Hi ,

I am sorry to hear that you will have to go through those tests. I feel for you

and will be thinking of you.

(Poly 35)

>

>I had an endoscopy today for the stomach problems and apparently I will

>be going through all the GI testing I went through prior to the first

>surgery (pH probe, monometry test, gastric emptying) because something

>might have been damaged from the surgery or the paralysis that had I

>already had in my GI might have worsened, I am truly not looking forward

>to that. The arthritis hasn't been to hot either, I seem to be going

>through a flare again. I don't see my rheumatologist until Feb 16th and

>dont have my next Remicade infusion till Feb 17th. On a happier note I

>found out this morning on the way to the hospital I found out that I was

>accepted into Sac State University! So far I have gotten into three of

>the five schools I applied..Only two left to hear from.

>

> Lots of Love

>

>

>

>

>

[Guest guest]

Sorry to hear about the GI stuff you have to go through. I'll keep

praying it goes ok with minimal discomfort for you. Congrats on the

college news!! Which one do you think you will accept? Good luck,

Michele (18,spondy)

Update

I had an endoscopy today for the stomach problems and apparently I will

be going through all the GI testing I went through prior to the first

surgery (pH probe, monometry test, gastric emptying) because something

might have been damaged from the surgery or the paralysis that had I

already had in my GI might have worsened, I am truly not looking forward

to that. The arthritis hasn't been to hot either, I seem to be going

through a flare again. I don't see my rheumatologist until Feb 16th and

dont have my next Remicade infusion till Feb 17th. On a happier note I

found out this morning on the way to the hospital I found out that I was

accepted into Sac State University! So far I have gotten into three of

the five schools I applied..Only two left to hear from.

Lots of Love

[Guest guest]

Hi :

Sorry to hear you aren't doing well:( Being constantly nauseated is

horrible (this one I know from personal experience)!

I wouldn't be a fan of giving myself shots either. I know you'll do it if

it's best for you even though it stinks!

I hope they find the right combo of meds to get you feeling better soon.

I'll keep you in my prayers. Any news on which school you are going to?

Take care.

Patty

[Guest guest]

-Hang in there ...

I hope that the remicade being given more often helps you. Its about

time you got a break!

hugs Helen and (8,systemic)

-- In , Salvucci <lisa_salvucci@...>

wrote:

>

> It has been awhile since I have updated so I thought I would. I

saw my rheumatologist on Thursday and she decided that she is not

really impressed with how I am doing and she is beginning to

question whether the Remicade is actually doing any good for me. I'm

not exactly ready to go back to giving myself shots so she decided

that she was going to move the infusions closer together so now I

will be recieving Remicade every 6 weeks instead of every 8 weeks.

If my joints have not improved by this point she said we will have

to change medications. Its not so much that I dislike giving myself

shots, its just that I really hate giving myself shots..lol I'm not

a big fan of it kind of lame I know.. but I can't help it something

about it really bothers me. So if the increase of infusions doesn't

help I will be starting Humira in April, I'm hoping the Remicade

starts working better. She did say that the side pain is definitely

inflamation and it looks like the AS is now affecting my ribcage

> in a not so great way. She started me back on an NSAID (Lodine).

She is hoping between the increase in Remicade and the NSAID along

with the Arava I am already on that it might kick this flare out and

get me feeling good again, I sure am hoping so. I also saw my

pulmonologist on Thursday and he said that the granuloma was nothing

to be worried about, it doesn't appear to be cancer, so basically I

don't have to do anything unless I start to have problems, they do

however want me to get a Pulmonary Function Test to monitor how well

I am breathing, so I will be doing that next month. My GI stuff (not

so JAS related) isn't going so great basically the endoscopy wasn't

conclusive enough, there was inflammation but it wasn't severe

enough to account for the problems I am having, so I will be having

a repeat monometry and pH probe in April (apparently there are

scheduling problems.. whatever I dont want to get it anyway).. the

only annoying part is that the longer I have to wait.. the

> longer it is going to take to get some answers regarding why I am

always nauseous.. They know its a side effect from the surgery they

just dont know why. So basically that is all that is going on with

me. Not so great.. but not the worst either..

>

> Lots of Love

> (JAS, 21)

>

>

>

[Guest guest]

I got into all of them.. but I'm heading to Sac State University. I'm pretty

excited too!! And I'm not going to let JAS ruin it for me. I worked really hard

to get here.. and I'm totally going to enjoy it despite the pain, nausea, and

stiffness..

Love always

(JAS, 21)

ThreeMayEmeralds@... wrote:

Hi :

Sorry to hear you aren't doing well:( Being constantly nauseated is

horrible (this one I know from personal experience)!

I wouldn't be a fan of giving myself shots either. I know you'll do it if

it's best for you even though it stinks!

I hope they find the right combo of meds to get you feeling better soon.

I'll keep you in my prayers. Any news on which school you are going to?

Take care.

Patty

[Guest guest]

Congratulations !!! You are amazing!!! I know this is going to be

the beginning of a new wonderful chapter for you. You continue to be an

inspirtation for all of us here on the list!!

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of Salvucci

Sent: Monday, February 20, 2006 1:31 PM

Subject: Re: Update

I got into all of them.. but I'm heading to Sac State University. I'm

pretty excited too!! And I'm not going to let JAS ruin it for me. I

worked really hard to get here.. and I'm totally going to enjoy it

despite the pain, nausea, and stiffness..

Love always

(JAS, 21)

ThreeMayEmeralds@... wrote:

Hi :

Sorry to hear you aren't doing well:( Being constantly nauseated is

horrible (this one I know from personal experience)!

I wouldn't be a fan of giving myself shots either. I know you'll do it

if

it's best for you even though it stinks!

I hope they find the right combo of meds to get you feeling better

soon.

I'll keep you in my prayers. Any news on which school you are going

to?

Take care.

Patty

[Guest guest]

That's right ! Great attitude from a great person. I wish you the

absolute best of luck hun and hope you enjoy everything you are so deserving

of!

Hugs! Donna

[Guest guest]

Wow that is such great news sonia. I'm so happy to hear all your good news. We

may be doing the same type of move in the near future for allot of the same

reasons as you. We aren't looking into AZ but some place that's warmer much

more of the year then here in MI. Espcially now that the hubby has RA too.

Good luck with your practice and Aundrea's remission.

--

Lorilee

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

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

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

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

From: " sonia1md " <sonia1md@...>

Hello everyone,

I haven't had much time to post lately, but I have been reading the

posts and doing my best to stay in touch when I can.

(Helen I did read about Nick's recent flare and am praying that

things will resolve soon? Wondering how the heart tests went on the

rest of the kids?)

Just thought I would let you guys know that our long journey to get

our chiropractic office open is now over. We moved to Az. in July

and have spent the last 8 months dealing with permits, contractors,

etc and Monday will be our opening day. We are so excited to bring

a natural form of health care to this community!

We knew that God had called us to Arizona but there were times that

fear just seemed to consume me. I didn't know how our pocket book

was going to stretch for 8 months but God was faithful to us and now

we have the opportunity to bless others thru our practice.

The most wonderful news of all, though is how great Aundrea is

doing. She is the reason we even began to investigate Az as a

possible place to move. She was so weather sensitive and the

Illinois winters were making her bed-bound. So we opted to give dry

heat a chance. I am so thrilled to say that she has been off of all

medicine, including the mtx for nearly 3 months now. She has made

it thru her first winter without any flare at all. She still has

the rash that pops up often, but all joints and stiffness have been

gone or barely there. I am praying that she will stay in a non-

medicated remission, which is always my prayer for all the kids on

this list to achieve.

I have to head off to work, but I hope that you all know that you

are like an extended family to me. We have been in this jra journey

for 3 years now and in the beginning I am certain that there are

some here that can recall what a wreck I was. So many of you

reached out and helped me, especially with the challenge that we

faced in placing aundrea on prednisone and then adding plaquenil and

mtx. You gave me such wisdom, encouragement, compassion and a kick

in the butt when it was time to start being a better advocate for my

dtr. Thank you!

Wishing you all a wonderful day and praying that a cure will be

found!

Blessings,

(Aundrea 10 systemic jra)

[Guest guest]

:

I am so glad to hear that your long wait is over. Your faith is so strong

and I know that God has blessed and will continue to bless your family.

Keep us posted on how things are going! Here's to a long, long remission

(permanently would be nice) for Aundrea!!

and Rob 16 Spondy

On Fri, 24 Feb 2006 14:44:49 -0000 " sonia1md " <sonia1md@...>

writes:

Hello everyone,

I haven't had much time to post lately, but I have been reading the

posts and doing my best to stay in touch when I can.

(Helen I did read about Nick's recent flare and am praying that

things will resolve soon? Wondering how the heart tests went on the

rest of the kids?)

Just thought I would let you guys know that our long journey to get

our chiropractic office open is now over. We moved to Az. in July

and have spent the last 8 months dealing with permits, contractors,

etc and Monday will be our opening day. We are so excited to bring

a natural form of health care to this community!

We knew that God had called us to Arizona but there were times that

fear just seemed to consume me. I didn't know how our pocket book

was going to stretch for 8 months but God was faithful to us and now

we have the opportunity to bless others thru our practice.

The most wonderful news of all, though is how great Aundrea is

doing. She is the reason we even began to investigate Az as a

possible place to move. She was so weather sensitive and the

Illinois winters were making her bed-bound. So we opted to give dry

heat a chance. I am so thrilled to say that she has been off of all

medicine, including the mtx for nearly 3 months now. She has made

it thru her first winter without any flare at all. She still has

the rash that pops up often, but all joints and stiffness have been

gone or barely there. I am praying that she will stay in a non-

medicated remission, which is always my prayer for all the kids on

this list to achieve.

I have to head off to work, but I hope that you all know that you

are like an extended family to me. We have been in this jra journey

for 3 years now and in the beginning I am certain that there are

some here that can recall what a wreck I was. So many of you

reached out and helped me, especially with the challenge that we

faced in placing aundrea on prednisone and then adding plaquenil and

mtx. You gave me such wisdom, encouragement, compassion and a kick

in the butt when it was time to start being a better advocate for my

dtr. Thank you!

Wishing you all a wonderful day and praying that a cure will be

found!

Blessings,

(Aundrea 10 systemic jra)

[Guest guest]

Horray for Aundrea!!! She is so deserving of a remission as is everyone who is

fighting this dredful disease.. but im so glad she is doing so well!!!

snooksmama@... wrote: :

I am so glad to hear that your long wait is over. Your faith is so strong

and I know that God has blessed and will continue to bless your family.

Keep us posted on how things are going! Here's to a long, long remission

(permanently would be nice) for Aundrea!!

and Rob 16 Spondy

On Fri, 24 Feb 2006 14:44:49 -0000 " sonia1md " <sonia1md@...>

writes:

Hello everyone,

I haven't had much time to post lately, but I have been reading the

posts and doing my best to stay in touch when I can.

(Helen I did read about Nick's recent flare and am praying that

things will resolve soon? Wondering how the heart tests went on the

rest of the kids?)

Just thought I would let you guys know that our long journey to get

our chiropractic office open is now over. We moved to Az. in July

and have spent the last 8 months dealing with permits, contractors,

etc and Monday will be our opening day. We are so excited to bring

a natural form of health care to this community!

We knew that God had called us to Arizona but there were times that

fear just seemed to consume me. I didn't know how our pocket book

was going to stretch for 8 months but God was faithful to us and now

we have the opportunity to bless others thru our practice.

The most wonderful news of all, though is how great Aundrea is

doing. She is the reason we even began to investigate Az as a

possible place to move. She was so weather sensitive and the

Illinois winters were making her bed-bound. So we opted to give dry

heat a chance. I am so thrilled to say that she has been off of all

medicine, including the mtx for nearly 3 months now. She has made

it thru her first winter without any flare at all. She still has

the rash that pops up often, but all joints and stiffness have been

gone or barely there. I am praying that she will stay in a non-

medicated remission, which is always my prayer for all the kids on

this list to achieve.

I have to head off to work, but I hope that you all know that you

are like an extended family to me. We have been in this jra journey

for 3 years now and in the beginning I am certain that there are

some here that can recall what a wreck I was. So many of you

reached out and helped me, especially with the challenge that we

faced in placing aundrea on prednisone and then adding plaquenil and

mtx. You gave me such wisdom, encouragement, compassion and a kick

in the butt when it was time to start being a better advocate for my

dtr. Thank you!

Wishing you all a wonderful day and praying that a cure will be

found!

Blessings,

(Aundrea 10 systemic jra)

[Guest guest]

-..

Its been a long long road you have traveled, but the fruits of your

labors will soon be returned to you 100 fold. I wish you all the

success in the world with the new office.

Aundreas remission continues to be an inspiration to us all. Its SOO

good for the soul to read of some of our friends being able to quit

medications and remain in remission. Its our hope and dream for ALL

the kids. May it continue to be so for Aundrea.

hugs Helen and (8,systemic)

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

>

> Hello everyone,

>

> I haven't had much time to post lately, but I have been reading

the

> posts and doing my best to stay in touch when I can.

>

> (Helen I did read about Nick's recent flare and am praying that

> things will resolve soon? Wondering how the heart tests went on

the

> rest of the kids?)

>

> Just thought I would let you guys know that our long journey to

get

> our chiropractic office open is now over. We moved to Az. in July

> and have spent the last 8 months dealing with permits,

contractors,

> etc and Monday will be our opening day. We are so excited to

bring

> a natural form of health care to this community!

>

> We knew that God had called us to Arizona but there were times

that

> fear just seemed to consume me. I didn't know how our pocket book

> was going to stretch for 8 months but God was faithful to us and

now

> we have the opportunity to bless others thru our practice.

>

> The most wonderful news of all, though is how great Aundrea is

> doing. She is the reason we even began to investigate Az as a

> possible place to move. She was so weather sensitive and the

> Illinois winters were making her bed-bound. So we opted to give

dry

> heat a chance. I am so thrilled to say that she has been off of

all

> medicine, including the mtx for nearly 3 months now. She has made

> it thru her first winter without any flare at all. She still has

> the rash that pops up often, but all joints and stiffness have

been

> gone or barely there. I am praying that she will stay in a non-

> medicated remission, which is always my prayer for all the kids on

> this list to achieve.

>

> I have to head off to work, but I hope that you all know that you

> are like an extended family to me. We have been in this jra

journey

> for 3 years now and in the beginning I am certain that there are

> some here that can recall what a wreck I was. So many of you

> reached out and helped me, especially with the challenge that we

> faced in placing aundrea on prednisone and then adding plaquenil

and

> mtx. You gave me such wisdom, encouragement, compassion and a

kick

> in the butt when it was time to start being a better advocate for

my

> dtr. Thank you!

>

> Wishing you all a wonderful day and praying that a cure will be

> found!

>

> Blessings,

> (Aundrea 10 systemic jra)

>

[Guest guest]

Thanks Helen,

I wish I weren't so stressed right now. I keep stoping to take a

deep breath now and then, but getting ready for opening day had been

absolutely crazy. Maybe it will just be better when Monday comes

and goes and dispite all that goes wrong, some things will go right!

lol

Aundrea complained of muscle pain today. She told me her thighs had

been hurting all day. Then her blue eyes get all big and she

says " Its NOT arthritis. " It wouldnt surpise me if she starts to

hide problems. She hated the shots and just wants to be normal.

Can't say I blame her, but remember when she was just 8 and she hid

all the prednisone pills. Sure wouldn't put anything past her.

Hopefully its just some freaky muscle pain! :-)

Thanks again for your well wishes. I am continuing to pray that

Nick will feel better soon and that remicade will be the answer for

him.

(Aundrea 10 systemic jra)--

- In , " hburger64 " <hburger64@...> wrote:

>

> -..

>

> Its been a long long road you have traveled, but the fruits of

your

> labors will soon be returned to you 100 fold. I wish you all the

> success in the world with the new office.

>

> Aundreas remission continues to be an inspiration to us all. Its

SOO

> good for the soul to read of some of our friends being able to

quit

> medications and remain in remission. Its our hope and dream for

ALL

> the kids. May it continue to be so for Aundrea.

>

> hugs Helen and (8,systemic)

>

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

> >

> > Hello everyone,

> >

> > I haven't had much time to post lately, but I have been reading

> the

> > posts and doing my best to stay in touch when I can.

> >

> > (Helen I did read about Nick's recent flare and am praying that

> > things will resolve soon? Wondering how the heart tests went on

> the

> > rest of the kids?)

> >

> > Just thought I would let you guys know that our long journey to

> get

> > our chiropractic office open is now over. We moved to Az. in

July

> > and have spent the last 8 months dealing with permits,

> contractors,

> > etc and Monday will be our opening day. We are so excited to

> bring

> > a natural form of health care to this community!

> >

> > We knew that God had called us to Arizona but there were times

> that

> > fear just seemed to consume me. I didn't know how our pocket

book

> > was going to stretch for 8 months but God was faithful to us and

> now

> > we have the opportunity to bless others thru our practice.

> >

> > The most wonderful news of all, though is how great Aundrea is

> > doing. She is the reason we even began to investigate Az as a

> > possible place to move. She was so weather sensitive and the

> > Illinois winters were making her bed-bound. So we opted to give

> dry

> > heat a chance. I am so thrilled to say that she has been off of

> all

> > medicine, including the mtx for nearly 3 months now. She has

made

> > it thru her first winter without any flare at all. She still

has

> > the rash that pops up often, but all joints and stiffness have

> been

> > gone or barely there. I am praying that she will stay in a non-

> > medicated remission, which is always my prayer for all the kids

on

> > this list to achieve.

> >

> > I have to head off to work, but I hope that you all know that

you

> > are like an extended family to me. We have been in this jra

> journey

> > for 3 years now and in the beginning I am certain that there are

> > some here that can recall what a wreck I was. So many of you

> > reached out and helped me, especially with the challenge that we

> > faced in placing aundrea on prednisone and then adding plaquenil

> and

> > mtx. You gave me such wisdom, encouragement, compassion and a

> kick

> > in the butt when it was time to start being a better advocate

for

> my

> > dtr. Thank you!

> >

> > Wishing you all a wonderful day and praying that a cure will be

> > found!

> >

> > Blessings,

> > (Aundrea 10 systemic jra)

> >

>

[Guest guest]

Thanks Lorilee...There are quite a few articles that you can

actually read about ra/jra and its influence regarding weather

sensitivity. I use to be a social worker in a nursing home and I

swear my residents with arthritis always were grumpier, and in a

whole lot more pain when the temps took a sudden downward turn!

Hope starts feeling better soon!

(aundrea 10 systemic jra)-

-- In , lorileedare@... wrote:

>

> Wow that is such great news sonia. I'm so happy to hear all your

good news. We may be doing the same type of move in the near future

for allot of the same reasons as you. We aren't looking into AZ but

some place that's warmer much more of the year then here in MI.

Espcially now that the hubby has RA too. Good luck with your

practice and Aundrea's remission.

>

> --

> Lorilee

> ~~~~~~~~~~~~~~~~

> Ken 47 {PolyRA}

> 6 {Systemic JRA, Eczema},

> Kayla 15 {Healthy Thank God}

> 18 {Asthma}

> ~~~~~~~~~~~~~~~~

>

> -------------- Original message --------------

> From: " sonia1md " <sonia1md@...>

> Hello everyone,

>

> I haven't had much time to post lately, but I have been reading

the

> posts and doing my best to stay in touch when I can.

>

> (Helen I did read about Nick's recent flare and am praying that

> things will resolve soon? Wondering how the heart tests went on

the

> rest of the kids?)

>

> Just thought I would let you guys know that our long journey to

get

> our chiropractic office open is now over. We moved to Az. in July

> and have spent the last 8 months dealing with permits,

contractors,

> etc and Monday will be our opening day. We are so excited to

bring

> a natural form of health care to this community!

>

> We knew that God had called us to Arizona but there were times

that

> fear just seemed to consume me. I didn't know how our pocket book

> was going to stretch for 8 months but God was faithful to us and

now

> we have the opportunity to bless others thru our practice.

>

> The most wonderful news of all, though is how great Aundrea is

> doing. She is the reason we even began to investigate Az as a

> possible place to move. She was so weather sensitive and the

> Illinois winters were making her bed-bound. So we opted to give

dry

> heat a chance. I am so thrilled to say that she has been off of

all

> medicine, including the mtx for nearly 3 months now. She has made

> it thru her first winter without any flare at all. She still has

> the rash that pops up often, but all joints and stiffness have

been

> gone or barely there. I am praying that she will stay in a non-

> medicated remission, which is always my prayer for all the kids on

> this list to achieve.

>

> I have to head off to work, but I hope that you all know that you

> are like an extended family to me. We have been in this jra

journey

> for 3 years now and in the beginning I am certain that there are

> some here that can recall what a wreck I was. So many of you

> reached out and helped me, especially with the challenge that we

> faced in placing aundrea on prednisone and then adding plaquenil

and

> mtx. You gave me such wisdom, encouragement, compassion and a

kick

> in the butt when it was time to start being a better advocate for

my

> dtr. Thank you!

>

> Wishing you all a wonderful day and praying that a cure will be

> found!

>

> Blessings,

> (Aundrea 10 systemic jra)

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Thanks for your well wishes and for your prayers. I am taking it

one day at a time with Aundrea and I think for the fist time if

remission isn't achieved it will actually be harder on Aundrea than

myself...Maybe because in the back of my head I know how hard it is

to achieve, but she has on the other hand enjoyed several months of

feeling awesome and I know that she doesn't want to give that up

ever again....We will just have to leave it in God's hands.

Hey, I saw you post on another other board about the quad cities.

My husband went to chiropractic school there and our home-town was

actually just a 45 minute drive away. We are a long ways from home

here in sunny phoenix, Az! :-)

(Aundrea 10 systemic jra)--

- In , snooksmama@... wrote:

>

> :

> I am so glad to hear that your long wait is over. Your faith is so

strong

> and I know that God has blessed and will continue to bless your

family.

> Keep us posted on how things are going! Here's to a long, long

remission

> (permanently would be nice) for Aundrea!!

> and Rob 16 Spondy

>

> On Fri, 24 Feb 2006 14:44:49 -0000 " sonia1md " <sonia1md@...>

> writes:

> Hello everyone,

>

> I haven't had much time to post lately, but I have been reading

the

> posts and doing my best to stay in touch when I can.

>

> (Helen I did read about Nick's recent flare and am praying that

> things will resolve soon? Wondering how the heart tests went on

the

> rest of the kids?)

>

> Just thought I would let you guys know that our long journey to

get

> our chiropractic office open is now over. We moved to Az. in July

> and have spent the last 8 months dealing with permits,

contractors,

> etc and Monday will be our opening day. We are so excited to

bring

> a natural form of health care to this community!

>

> We knew that God had called us to Arizona but there were times

that

> fear just seemed to consume me. I didn't know how our pocket book

> was going to stretch for 8 months but God was faithful to us and

now

> we have the opportunity to bless others thru our practice.

>

> The most wonderful news of all, though is how great Aundrea is

> doing. She is the reason we even began to investigate Az as a

> possible place to move. She was so weather sensitive and the

> Illinois winters were making her bed-bound. So we opted to give

dry

> heat a chance. I am so thrilled to say that she has been off of

all

> medicine, including the mtx for nearly 3 months now. She has made

> it thru her first winter without any flare at all. She still has

> the rash that pops up often, but all joints and stiffness have

been

> gone or barely there. I am praying that she will stay in a non-

> medicated remission, which is always my prayer for all the kids on

> this list to achieve.

>

> I have to head off to work, but I hope that you all know that you

> are like an extended family to me. We have been in this jra

journey

> for 3 years now and in the beginning I am certain that there are

> some here that can recall what a wreck I was. So many of you

> reached out and helped me, especially with the challenge that we

> faced in placing aundrea on prednisone and then adding plaquenil

and

> mtx. You gave me such wisdom, encouragement, compassion and a

kick

> in the butt when it was time to start being a better advocate for

my

> dtr. Thank you!

>

> Wishing you all a wonderful day and praying that a cure will be

> found!

>

> Blessings,

> (Aundrea 10 systemic jra)

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks for your well wishes and congratulations to you with all

of the offers for universities to attend! You are doing great

dispite the many health struggles. You are a blessing!--

(aundrea 10 systemic jra)

- In , Salvucci <lisa_salvucci@...>

wrote:

>

> Horray for Aundrea!!! She is so deserving of a remission as is

everyone who is fighting this dredful disease.. but im so glad she

is doing so well!!!

>

> snooksmama@... wrote: :

> I am so glad to hear that your long wait is over. Your faith is so

strong

> and I know that God has blessed and will continue to bless your

family.

> Keep us posted on how things are going! Here's to a long, long

remission

> (permanently would be nice) for Aundrea!!

> and Rob 16 Spondy

>

> On Fri, 24 Feb 2006 14:44:49 -0000 " sonia1md " <sonia1md@...>

> writes:

> Hello everyone,

>

> I haven't had much time to post lately, but I have been reading

the

> posts and doing my best to stay in touch when I can.

>

> (Helen I did read about Nick's recent flare and am praying that

> things will resolve soon? Wondering how the heart tests went on

the

> rest of the kids?)

>

> Just thought I would let you guys know that our long journey to

get

> our chiropractic office open is now over. We moved to Az. in July

> and have spent the last 8 months dealing with permits,

contractors,

> etc and Monday will be our opening day. We are so excited to

bring

> a natural form of health care to this community!

>

> We knew that God had called us to Arizona but there were times

that

> fear just seemed to consume me. I didn't know how our pocket book

> was going to stretch for 8 months but God was faithful to us and

now

> we have the opportunity to bless others thru our practice.

>

> The most wonderful news of all, though is how great Aundrea is

> doing. She is the reason we even began to investigate Az as a

> possible place to move. She was so weather sensitive and the

> Illinois winters were making her bed-bound. So we opted to give

dry

> heat a chance. I am so thrilled to say that she has been off of

all

> medicine, including the mtx for nearly 3 months now. She has made

> it thru her first winter without any flare at all. She still has

> the rash that pops up often, but all joints and stiffness have

been

> gone or barely there. I am praying that she will stay in a non-

> medicated remission, which is always my prayer for all the kids on

> this list to achieve.

>

> I have to head off to work, but I hope that you all know that you

> are like an extended family to me. We have been in this jra

journey

> for 3 years now and in the beginning I am certain that there are

> some here that can recall what a wreck I was. So many of you

> reached out and helped me, especially with the challenge that we

> faced in placing aundrea on prednisone and then adding plaquenil

and

> mtx. You gave me such wisdom, encouragement, compassion and a

kick

> in the butt when it was time to start being a better advocate for

my

> dtr. Thank you!

>

> Wishing you all a wonderful day and praying that a cure will be

> found!

>

> Blessings,

> (Aundrea 10 systemic jra)

>

>

>

>

>

>

>

>

>

>