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:

I've been trying to catch up to the list, and was so sorry to read of

Drea's continuing struggles. I felt so badly that not only did it have an

impact on her trip to Grandma's, but now she is having such a time since

starting school again. My heart broke when I read about her difficulties

last weekend.

Please let her know we are thinking of her and hope that things are

better soon.

and Rob 17 Spondy

On Tue, 22 Aug 2006 17:03:38 -0000 " sonia1md " <sonia1md@...>

writes:

Drea is still home from school. Sore throat is worse and more swollen

lymph nodes. I managed to get an appt. with the new ped. scheduled

for later this morning.

I am not sure if the the sore throat problems are simply related to

her arthritis flare or if something else is going on.

She is still having lots of tummy issues so it will be good to discuss

that concern as well.

I will give you an update after her appt.

(Aundrea 11 systemic jra)

Herth Schulz

Secretary/Public Relations Coordinator

Precious Helpers Horse Farm

www.precioushelpers.org

A Cost-Free Christian Riding Therapy Program

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Just got back from the new pediatrician. I really liked her and

think she will be a good " fit " for us. Anyway the rapid strep test

was negative. So either she has a viral infection or more likely

its simply related to her current arthritis flare and is attacking

her lymph nodes.

We discussed the gastric issues. She thinks that the problems still

stem from the week that Drea was on Aleve. She prescribed prilosec

and wants her to take it daily for 2 weeks. If she isn't

significantly better then I am suppose to call her back and she will

arrange for a GI consult.

We did have a blessing happen last night. I was at church and

visiting with my neighbor that also goes to our church. She asked

if we had a hot tub and if it would help Drea. I told her we didn't

have one and that yes it does help her joints. So, she offered for

Drea to come over whenever she wants to use their hot tub. We plan

to give her a call tonight and let Drea enjoy a nice soak. Drea was

pretty happy when I told her about it.

(Aundrea 11 systemic jra)

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

>

> Drea is still home from school. Sore throat is worse and more

swollen

> lymph nodes. I managed to get an appt. with the new ped.

scheduled

> for later this morning.

>

> I am not sure if the the sore throat problems are simply related

to

> her arthritis flare or if something else is going on.

>

> She is still having lots of tummy issues so it will be good to

discuss

> that concern as well.

>

> I will give you an update after her appt.

>

> (Aundrea 11 systemic jra)

>

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:

I am really glad you like your new ped. I am also glad she is giving Aundrea

something for the stomach issue its been going on way too long. The one thing

that we did with Hannah when this started was to keept track of what she ate.

We found several things that she just did not tolerate well. Any beverage with

caffine; deep fried foods and tomato based foods really affect her since this

started. Just something to think about.

Are her joints any better today? Love the hot tub idea!!

sonia1md <sonia1md@...> wrote:

Just got back from the new pediatrician. I really liked her and

think she will be a good " fit " for us. Anyway the rapid strep test

was negative. So either she has a viral infection or more likely

its simply related to her current arthritis flare and is attacking

her lymph nodes.

We discussed the gastric issues. She thinks that the problems still

stem from the week that Drea was on Aleve. She prescribed prilosec

and wants her to take it daily for 2 weeks. If she isn't

significantly better then I am suppose to call her back and she will

arrange for a GI consult.

We did have a blessing happen last night. I was at church and

visiting with my neighbor that also goes to our church. She asked

if we had a hot tub and if it would help Drea. I told her we didn't

have one and that yes it does help her joints. So, she offered for

Drea to come over whenever she wants to use their hot tub. We plan

to give her a call tonight and let Drea enjoy a nice soak. Drea was

pretty happy when I told her about it.

(Aundrea 11 systemic jra)

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

>

> Drea is still home from school. Sore throat is worse and more

swollen

> lymph nodes. I managed to get an appt. with the new ped.

scheduled

> for later this morning.

>

> I am not sure if the the sore throat problems are simply related

to

> her arthritis flare or if something else is going on.

>

> She is still having lots of tummy issues so it will be good to

discuss

> that concern as well.

>

> I will give you an update after her appt.

>

> (Aundrea 11 systemic jra)

>

Beth Yohnk

Happy Thoughts..Be Well

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!

I'm so happy to hear that Aundrea will have access to a hot tub! Ours was

a godsend, and still is. What a wonderful neighbor!

I hope that the prilosec will help greatly and she can avoid the trip to

the GI.

I'll continue to keep you guys in my prayers.

and Rob 17 Spondy

On Tue, 22 Aug 2006 19:32:02 -0000 " sonia1md " <sonia1md@...>

writes:

Just got back from the new pediatrician. I really liked her and

think she will be a good " fit " for us. Anyway the rapid strep test

was negative. So either she has a viral infection or more likely

its simply related to her current arthritis flare and is attacking

her lymph nodes.

We discussed the gastric issues. She thinks that the problems still

stem from the week that Drea was on Aleve. She prescribed prilosec

and wants her to take it daily for 2 weeks. If she isn't

significantly better then I am suppose to call her back and she will

arrange for a GI consult.

We did have a blessing happen last night. I was at church and

visiting with my neighbor that also goes to our church. She asked

if we had a hot tub and if it would help Drea. I told her we didn't

have one and that yes it does help her joints. So, she offered for

Drea to come over whenever she wants to use their hot tub. We plan

to give her a call tonight and let Drea enjoy a nice soak. Drea was

pretty happy when I told her about it.

(Aundrea 11 systemic jra)

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

>

> Drea is still home from school. Sore throat is worse and more

swollen

> lymph nodes. I managed to get an appt. with the new ped.

scheduled

> for later this morning.

>

> I am not sure if the the sore throat problems are simply related

to

> her arthritis flare or if something else is going on.

>

> She is still having lots of tummy issues so it will be good to

discuss

> that concern as well.

>

> I will give you an update after her appt.

>

> (Aundrea 11 systemic jra)

>

Herth Schulz

Secretary/Public Relations Coordinator

Precious Helpers Horse Farm

www.precioushelpers.org

A Cost-Free Christian Riding Therapy Program

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Beth,

Thanks for the food suggestions. We noticed some of the same foods

as far as anything fried, caffiene drinks, and also ice-cream.

Her joints aren't any better. She just got back in the bath tub and

is looking forward to going to the hot tub tonight. She should

shrivel up to a prune! :-)

How is Hannah doing today?

(Drea 11 systemic jra)

> >

> > Drea is still home from school. Sore throat is worse and more

> swollen

> > lymph nodes. I managed to get an appt. with the new ped.

> scheduled

> > for later this morning.

> >

> > I am not sure if the the sore throat problems are simply related

> to

> > her arthritis flare or if something else is going on.

> >

> > She is still having lots of tummy issues so it will be good to

> discuss

> > that concern as well.

> >

> > I will give you an update after her appt.

> >

> > (Aundrea 11 systemic jra)

> >

>

>

>

>

>

>

> Beth Yohnk

> Happy Thoughts..Be Well

>

>

>

>

>

>

>

>

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Share on other sites

Hi ,

Thanks for the prayers and well wishes! I sure hope the prilosec

will take care of the gastric issues. She seems to have some

anxiety over getting the stomach cramps and that knot in her

throat. It would be good to at least get that resolved.

The ped asked if we had considered moving on to some of the other

biologic meds. I guess I think we haven't given mtx a fair enough

chance just yet. Its tempting to call the rheumy now and just have

him bump her dose up but then I think we just haven't given it

enough time. If we hold out a few more weeks then we will know we

need to make a change but if we do it now, we wont know if she could

have gotten by with a lower dose...Its so hard to wait though!

Sorry to hear about Robs continued struggles. I know he must be

hurting something awful for him to call off to work. It seems like

he has a pretty physical job which I imagine can be quite taxing on

his body.

I was looking thru the photo album the other day on this list and

saw you and Rob...Do you have his senior picture posted to the album

yet? Maybe I missed it? I like it when I pray for those on the

list and am able to connect the name and the face. Right now I am

praying that Rob will feel better soon and have an AWESOME senior

year!

(Aundrea 11 systemic jra)

-

-- In , snooksmama@... wrote:

>

> :

> I've been trying to catch up to the list, and was so sorry to read

of

> Drea's continuing struggles. I felt so badly that not only did it

have an

> impact on her trip to Grandma's, but now she is having such a time

since

> starting school again. My heart broke when I read about her

difficulties

> last weekend.

> Please let her know we are thinking of her and hope that things are

> better soon.

> and Rob 17 Spondy

>

> On Tue, 22 Aug 2006 17:03:38 -0000 " sonia1md " <sonia1md@...>

> writes:

> Drea is still home from school. Sore throat is worse and more

swollen

> lymph nodes. I managed to get an appt. with the new ped. scheduled

> for later this morning.

>

> I am not sure if the the sore throat problems are simply related

to

> her arthritis flare or if something else is going on.

>

> She is still having lots of tummy issues so it will be good to

discuss

> that concern as well.

>

> I will give you an update after her appt.

>

> (Aundrea 11 systemic jra)

>

>

>

>

>

> Herth Schulz

> Secretary/Public Relations Coordinator

> Precious Helpers Horse Farm

> www.precioushelpers.org

> A Cost-Free Christian Riding Therapy Program

>

>

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Share on other sites

I'd love to tell you she's better...but I won't lie :-) She spent most of the

afternoon in the pool at my mom's and said that was only time she was pain free

all day.

Last night was really rough...she just cired for over 2 hrs and just kept

saying " when will I feel like myself again..I want my old life back " . It was

truly heartwrenching. She also has not been sleeping well. She says the pain

even keeps her up at night. I'm debating whether to call the rhemy...I'm pretty

sure I know what she'll say.

sonia1md <sonia1md@...> wrote:

Beth,

Thanks for the food suggestions. We noticed some of the same foods

as far as anything fried, caffiene drinks, and also ice-cream.

Her joints aren't any better. She just got back in the bath tub and

is looking forward to going to the hot tub tonight. She should

shrivel up to a prune! :-)

How is Hannah doing today?

(Drea 11 systemic jra)

> >

> > Drea is still home from school. Sore throat is worse and more

> swollen

> > lymph nodes. I managed to get an appt. with the new ped.

> scheduled

> > for later this morning.

> >

> > I am not sure if the the sore throat problems are simply related

> to

> > her arthritis flare or if something else is going on.

> >

> > She is still having lots of tummy issues so it will be good to

> discuss

> > that concern as well.

> >

> > I will give you an update after her appt.

> >

> > (Aundrea 11 systemic jra)

> >

>

>

>

>

>

>

> Beth Yohnk

> Happy Thoughts..Be Well

>

>

>

>

>

>

>

>

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Siiiiiiiiiiiiiiiiiiigh, I feeel soooooooooooooooo sad for because I

KNOW... what it's like to be where she is....... =(( .....

DOnt know what else to say.... im having such a rough time right now... and

I feel sad for and others....

hang in there...

i

On 8/22/06, Beth Yohnk <yohnkmom@...> wrote:

>

> I'd love to tell you she's better...but I won't lie :-) She spent most

> of the afternoon in the pool at my mom's and said that was only time she was

> pain free all day.

>

> Last night was really rough...she just cired for over 2 hrs and just kept

> saying " when will I feel like myself again..I want my old life back " . It was

> truly heartwrenching. She also has not been sleeping well. She says the pain

> even keeps her up at night. I'm debating whether to call the rhemy...I'm

> pretty sure I know what she'll say.

>

> sonia1md <sonia1md@... <sonia1md%40>> wrote:

> Beth,

>

> Thanks for the food suggestions. We noticed some of the same foods

> as far as anything fried, caffiene drinks, and also ice-cream.

>

> Her joints aren't any better. She just got back in the bath tub and

> is looking forward to going to the hot tub tonight. She should

> shrivel up to a prune! :-)

>

> How is Hannah doing today?

>

> (Drea 11 systemic jra)

>

>

> > >

> > > Drea is still home from school. Sore throat is worse and more

> > swollen

> > > lymph nodes. I managed to get an appt. with the new ped.

> > scheduled

> > > for later this morning.

> > >

> > > I am not sure if the the sore throat problems are simply related

> > to

> > > her arthritis flare or if something else is going on.

> > >

> > > She is still having lots of tummy issues so it will be good to

> > discuss

> > > that concern as well.

> > >

> > > I will give you an update after her appt.

> > >

> > > (Aundrea 11 systemic jra)

> > >

> >

> >

> >

> >

> >

> >

> > Beth Yohnk

> > Happy Thoughts..Be Well

> >

> >

> >

> >

> >

> >

> >

> >

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Thats terrible. I remember when Drea was first sick and she was

doubled over in pain. She was crying and said that she hated

arthritis, she hated her body, and she also wanted her " old " life

back. Nothing rips the heart out of a mom more than watching her

children suffer.

I know you have called the rheumy so many times to no avail....But I

would lean toward a phone call telling him that you want to give an

update. Leave a message regarding what you just said about Hannah.

The ball stays in his court, but at least you are trying to do

something.

Drea just called me to say her throat was killing her and the pain

was to severe for her to walk. I said lets call the rheumy and

increase you mtx. She said she was going to wait two more weeks and

then if she wasn't better we could call. She does best if I let her

have some say in her care and give her time to ease into a change.

I had a super frustrating time at the drug store. The stupid

prilosec required a prior authorization from the insurance company.

Otherwise I get to pay another $90 out of pocket. I paid out of

pocket last month for the mtx because we were waiting for a prior

auth. At least mtx isn't so expensive. It took 3 weeks before we

got consent from the insurance company and even then it was only

approved for 3 months. What fun to go thru that mess every 3

months! Ugh...some days are just plain rough! I think I will join

drea for that soak in the hot tub tonight!

I will let Drea know about Hannah and maybe the two can get propped

up at the computer for a bit to visit or play an online game. Does

Hannah have messenger? I am sure drea would love to instant

chat with her or play a game of checkers.

(aundrea 11 systemic jra)-

-- In , Beth Yohnk <yohnkmom@...> wrote:

>

> I'd love to tell you she's better...but I won't lie :-) She spent

most of the afternoon in the pool at my mom's and said that was only

time she was pain free all day.

>

> Last night was really rough...she just cired for over 2 hrs and

just kept saying " when will I feel like myself again..I want my old

life back " . It was truly heartwrenching. She also has not been

sleeping well. She says the pain even keeps her up at night. I'm

debating whether to call the rhemy...I'm pretty sure I know what

she'll say.

>

> sonia1md <sonia1md@...> wrote:

> Beth,

>

> Thanks for the food suggestions. We noticed some of the same foods

> as far as anything fried, caffiene drinks, and also ice-cream.

>

> Her joints aren't any better. She just got back in the bath tub

and

> is looking forward to going to the hot tub tonight. She should

> shrivel up to a prune! :-)

>

> How is Hannah doing today?

>

> (Drea 11 systemic jra)

>

>

> > >

> > > Drea is still home from school. Sore throat is worse and more

> > swollen

> > > lymph nodes. I managed to get an appt. with the new ped.

> > scheduled

> > > for later this morning.

> > >

> > > I am not sure if the the sore throat problems are simply

related

> > to

> > > her arthritis flare or if something else is going on.

> > >

> > > She is still having lots of tummy issues so it will be good to

> > discuss

> > > that concern as well.

> > >

> > > I will give you an update after her appt.

> > >

> > > (Aundrea 11 systemic jra)

> > >

> >

> >

> >

> >

> >

> >

> > Beth Yohnk

> > Happy Thoughts..Be Well

> >

> >

> >

> >

> >

> >

> >

> >

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Take a nice bottle of wine with you:)

I have learned to find out what meds my insurance will cover before going to

the doctors office. That can save you a lot of time and hassle.

Yes, Hannah has instant messanger and was just on about an hour go to see if

Drea was online. Hannah would love that..she too wanted Drea to know she is not

suffering alone right now. Sad, but true.

I will call the rheumy in the morning...we'll have to wait & see. Sept 21 is

a LONG ways off and Hannah will be in no condition to start school like this.

sonia1md <sonia1md@...> wrote:

Thats terrible. I remember when Drea was first sick and she was

doubled over in pain. She was crying and said that she hated

arthritis, she hated her body, and she also wanted her " old " life

back. Nothing rips the heart out of a mom more than watching her

children suffer.

I know you have called the rheumy so many times to no avail....But I

would lean toward a phone call telling him that you want to give an

update. Leave a message regarding what you just said about Hannah.

The ball stays in his court, but at least you are trying to do

something.

Drea just called me to say her throat was killing her and the pain

was to severe for her to walk. I said lets call the rheumy and

increase you mtx. She said she was going to wait two more weeks and

then if she wasn't better we could call. She does best if I let her

have some say in her care and give her time to ease into a change.

I had a super frustrating time at the drug store. The stupid

prilosec required a prior authorization from the insurance company.

Otherwise I get to pay another $90 out of pocket. I paid out of

pocket last month for the mtx because we were waiting for a prior

auth. At least mtx isn't so expensive. It took 3 weeks before we

got consent from the insurance company and even then it was only

approved for 3 months. What fun to go thru that mess every 3

months! Ugh...some days are just plain rough! I think I will join

drea for that soak in the hot tub tonight!

I will let Drea know about Hannah and maybe the two can get propped

up at the computer for a bit to visit or play an online game. Does

Hannah have messenger? I am sure drea would love to instant

chat with her or play a game of checkers.

(aundrea 11 systemic jra)-

-- In , Beth Yohnk <yohnkmom@...> wrote:

>

> I'd love to tell you she's better...but I won't lie :-) She spent

most of the afternoon in the pool at my mom's and said that was only

time she was pain free all day.

>

> Last night was really rough...she just cired for over 2 hrs and

just kept saying " when will I feel like myself again..I want my old

life back " . It was truly heartwrenching. She also has not been

sleeping well. She says the pain even keeps her up at night. I'm

debating whether to call the rhemy...I'm pretty sure I know what

she'll say.

>

> sonia1md <sonia1md@...> wrote:

> Beth,

>

> Thanks for the food suggestions. We noticed some of the same foods

> as far as anything fried, caffiene drinks, and also ice-cream.

>

> Her joints aren't any better. She just got back in the bath tub

and

> is looking forward to going to the hot tub tonight. She should

> shrivel up to a prune! :-)

>

> How is Hannah doing today?

>

> (Drea 11 systemic jra)

>

>

> > >

> > > Drea is still home from school. Sore throat is worse and more

> > swollen

> > > lymph nodes. I managed to get an appt. with the new ped.

> > scheduled

> > > for later this morning.

> > >

> > > I am not sure if the the sore throat problems are simply

related

> > to

> > > her arthritis flare or if something else is going on.

> > >

> > > She is still having lots of tummy issues so it will be good to

> > discuss

> > > that concern as well.

> > >

> > > I will give you an update after her appt.

> > >

> > > (Aundrea 11 systemic jra)

> > >

> >

> >

> >

> >

> >

> >

> > Beth Yohnk

> > Happy Thoughts..Be Well

> >

> >

> >

> >

> >

> >

> >

> >

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Share on other sites

:

I hope that Aundrea's week gets better and better. I'm with you, giving

it a bit more time...since the injections worked so well the last time,

and you know that her dose was suboptimal while at grandma's, it makes

sense.

I noticed a difference with me and the mtx injections in about 4 weeks.

They have been a godsend! I got off schedule 2 weeks ago with the mtx, a

mix up in the order (I'm changing pharmacies, they really dropped the

ball) and it set me back. I'm feeling better today than yesterday, and

hope that it will continue. It's also nice because since I started the

mtx, I'm not having the Enbrel site injection reactions that I used to

get. Swelling and itching around the injection usually, and that isn't

occurring anymore.

Rob has found that most jobs available for teens are physical or involve

standing. And it seems that guys are somewhat discriminated against. When

a guy and a girl apply at Target, for example, the guy is assigned to

carts, usually, while the girl gets cashier. Rob doesn't want to tell

anyone he has arthritis, so therefore he is assigned to a more physical

job.

He's learning though. I have to let him spread his wings! His answer to

the Target dilemma is to apply at Meyer. He scoped out their parking lot

and its downhill to push the carts into their store. So he applied there.

We are still looking for other options. He's likely to quit Target if he

gets the job at Meyer. I hope that he finds something else less physical.

However, most teens are young and strong (he is too) and when they apply

for jobs it is assumed that they can do physical stuff. Since Rob doesn't

want to tell them he has arthritis he has backed himself into a corner. I

have to let him figure this out on his own, though.

I haven't posted Rob's picture to the site yet because I only have proofs

and they have the name of the photo studio on them. They are copyrighted.

I don't know if I'll be able to scan one in once I have them in hand, but

I'll try. There may be the studio's name showing up when you scan. Most

studios do this these days.

That is so sweet you are praying for him. We really appreciate it!

I have some good news. I talked to Uncle Rusty last night and his bone

marrow results were normal. They are working on resolving his anemia, and

he is taking erythropoetin shots once a week, for 6 weeks. Tree got out

of rehab today, and went to her mother's house, as her house is still

undergoing renovation. I don't know if you remember that some family

members are adding on a large bedroom and roll-in bathroom for her onto

their house. What a godsend!

How was the hot tub last night?

Thanks for your prayers and tell Aundrea we're praying for her, too!

and Rob 17 Spondy

On Tue, 22 Aug 2006 20:55:16 -0000 " sonia1md " <sonia1md@...>

writes:

Hi ,

Thanks for the prayers and well wishes! I sure hope the prilosec

will take care of the gastric issues. She seems to have some

anxiety over getting the stomach cramps and that knot in her

throat. It would be good to at least get that resolved.

The ped asked if we had considered moving on to some of the other

biologic meds. I guess I think we haven't given mtx a fair enough

chance just yet. Its tempting to call the rheumy now and just have

him bump her dose up but then I think we just haven't given it

enough time. If we hold out a few more weeks then we will know we

need to make a change but if we do it now, we wont know if she could

have gotten by with a lower dose...Its so hard to wait though!

Sorry to hear about Robs continued struggles. I know he must be

hurting something awful for him to call off to work. It seems like

he has a pretty physical job which I imagine can be quite taxing on

his body.

I was looking thru the photo album the other day on this list and

saw you and Rob...Do you have his senior picture posted to the album

yet? Maybe I missed it? I like it when I pray for those on the

list and am able to connect the name and the face. Right now I am

praying that Rob will feel better soon and have an AWESOME senior

year!

(Aundrea 11 systemic jra)

-

-- In , snooksmama@... wrote:

>

> :

> I've been trying to catch up to the list, and was so sorry to read

of

> Drea's continuing struggles. I felt so badly that not only did it

have an

> impact on her trip to Grandma's, but now she is having such a time

since

> starting school again. My heart broke when I read about her

difficulties

> last weekend.

> Please let her know we are thinking of her and hope that things are

> better soon.

> and Rob 17 Spondy

>

> On Tue, 22 Aug 2006 17:03:38 -0000 " sonia1md " <sonia1md@...>

> writes:

> Drea is still home from school. Sore throat is worse and more

swollen

> lymph nodes. I managed to get an appt. with the new ped. scheduled

> for later this morning.

>

> I am not sure if the the sore throat problems are simply related

to

> her arthritis flare or if something else is going on.

>

> She is still having lots of tummy issues so it will be good to

discuss

> that concern as well.

>

> I will give you an update after her appt.

>

> (Aundrea 11 systemic jra)

>

>

>

>

>

> Herth Schulz

> Secretary/Public Relations Coordinator

> Precious Helpers Horse Farm

> www.precioushelpers.org

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Issadora,

Sorry to hear that your not feeling good. Whats been going on?

Drea made it thru school all day. she said she was really tired and

that her joints ached but she managed to " tough " it out. This

evening her tummy ache and joint pain returned. My neighbor called

and invited us over to use her hot tub. It was great. Drea was

happy to have a little soak.

Drea is suppose to go to another slumber/birthday part tomorrow. We

talked to her about it. We told her that we didn't think she was

ready and that the flare just wasn't under enough control. She

seemed relieved about not going but said that her friends don't

really understand.

I guess we just have to focus on little steps right now and making

it thru a whole day of school was a good step!

Hope things get better for you and thank you as always for your kind

words and your informative/compassionate posts that you share with

the group!

(Drea 11 systemic jra)-

-- In , " Issadora " <FlyfreeIzzie@...> wrote:

>

> Siiiiiiiiiiiiiiiiiiigh, I feeel soooooooooooooooo sad for

because I

> KNOW... what it's like to be where she is....... =(( .....

>

> DOnt know what else to say.... im having such a rough time right

now... and

> I feel sad for and others....

>

> hang in there...

> i

>

>

> On 8/22/06, Beth Yohnk <yohnkmom@...> wrote:

> >

> > I'd love to tell you she's better...but I won't lie :-) She

spent most

> > of the afternoon in the pool at my mom's and said that was only

time she was

> > pain free all day.

> >

> > Last night was really rough...she just cired for over 2 hrs and

just kept

> > saying " when will I feel like myself again..I want my old life

back " . It was

> > truly heartwrenching. She also has not been sleeping well. She

says the pain

> > even keeps her up at night. I'm debating whether to call the

rhemy...I'm

> > pretty sure I know what she'll say.

> >

> > sonia1md <sonia1md@... <sonia1md%40>> wrote:

> > Beth,

> >

> > Thanks for the food suggestions. We noticed some of the same

foods

> > as far as anything fried, caffiene drinks, and also ice-cream.

> >

> > Her joints aren't any better. She just got back in the bath tub

and

> > is looking forward to going to the hot tub tonight. She should

> > shrivel up to a prune! :-)

> >

> > How is Hannah doing today?

> >

> > (Drea 11 systemic jra)

> >

> >

> > > >

> > > > Drea is still home from school. Sore throat is worse and more

> > > swollen

> > > > lymph nodes. I managed to get an appt. with the new ped.

> > > scheduled

> > > > for later this morning.

> > > >

> > > > I am not sure if the the sore throat problems are simply

related

> > > to

> > > > her arthritis flare or if something else is going on.

> > > >

> > > > She is still having lots of tummy issues so it will be good

to

> > > discuss

> > > > that concern as well.

> > > >

> > > > I will give you an update after her appt.

> > > >

> > > > (Aundrea 11 systemic jra)

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Beth Yohnk

> > > Happy Thoughts..Be Well

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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  • 5 months later...

:

I hope that you hear something soon. I cannot imagine how frustrated you

must be over the whole situation.

I hope that Aundrea will soon get started on something new that will take

away her pain. Please tell her we are thinking of her and praying for

her.

and Rob 17 Spondy

On Mon, 05 Feb 2007 22:35:52 -0000 " sonia1md " <sonia1md@...>

writes:

Thank you to all of you that responded to my previous post and

offered your suggestions. It really helps to bounce things off of

others.

I called the ped rheumy's office today. Still not taking

patients..Told me to call back at the end of the month. I highly

doubt that this is anyone person's fault but basically just lots of

red tape in getting a new practice opened. Still, I have been put

off in getting Drea an appt since last Sept and each time I call I am

told they will be open in just a few weeks.

Aundrea missed several days of school last week and is home again

today. Her joint pain and swollen lymph node issues continue. I

called her current rheumy today and asked them to fax me a copy of

her most recent labs. I also left them a message explaining that we

had been waiting to get into the ped rheumy do the fact that he also

accepts our insurance. I also explained that aundrea is still

flaring so we may need to go ahead and address this issue without

waiting any longer to get the opinion of the ped rheumy.

I am waiting to hear back. So, I will let you know what they have to

say whenever they call back.

(aundrea 11 systemic jra/gerd)

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Hi ,

I spoke with the office for Aundrea's current rheumy. I told them my

deliema. I went ahead and scheduled her appt. for this Friday.

I will let you know what happens. I know Aundrea's goal is to get

rid of shots. I can't help but think of and Chris. Aundrea

is younger though and I still have some parental say over what is

going to happen. For the first time ever I explained to Aundrea what

could/would happen if we left her arthritis untreated. I think that

may have helped a little. She still hates the shots. Its not the

needle its the nausea afterwards.

I sure wish that there was some way to treat arthritis that wasn't so

yucky as shots and if I could ever find a way to lessen the side

effects our lives would be so much easier.

Thanks again,

(aundrea 11 systemic/gerd)

-- In , snooksmama@... wrote:

>

> :

> I hope that you hear something soon. I cannot imagine how

frustrated you

> must be over the whole situation.

> I hope that Aundrea will soon get started on something new that

will take

> away her pain. Please tell her we are thinking of her and praying

for

> her.

> and Rob 17 Spondy

>

> On Mon, 05 Feb 2007 22:35:52 -0000 " sonia1md " <sonia1md@...>

> writes:

> Thank you to all of you that responded to my previous post and

> offered your suggestions. It really helps to bounce things off of

> others.

>

> I called the ped rheumy's office today. Still not taking

> patients..Told me to call back at the end of the month. I highly

> doubt that this is anyone person's fault but basically just lots of

> red tape in getting a new practice opened. Still, I have been put

> off in getting Drea an appt since last Sept and each time I call I

am

> told they will be open in just a few weeks.

>

> Aundrea missed several days of school last week and is home again

> today. Her joint pain and swollen lymph node issues continue. I

> called her current rheumy today and asked them to fax me a copy of

> her most recent labs. I also left them a message explaining that we

> had been waiting to get into the ped rheumy do the fact that he

also

> accepts our insurance. I also explained that aundrea is still

> flaring so we may need to go ahead and address this issue without

> waiting any longer to get the opinion of the ped rheumy.

>

> I am waiting to hear back. So, I will let you know what they have

to

> say whenever they call back.

>

> (aundrea 11 systemic jra/gerd)

>

>

>

>

>

>

>

>

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Hi :

That stinks that the peds rheumy isn't ready to accept patients yet, but

sounds like it will happen soon.

I hope Aundrea gets some much needed relief soon.

Take care.

Patty

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Hi :

Hubby's job is just a job to him. Doesn't hate it, but doesn't particularly

like it either. Good people to work with and a pay check plus health

insurance, which we all know is so important:)

Caitlin had a mental health crisis and I admitted her to hospital with an

adolescent mental health unit two days before Thanksgiving. Thankfully, she is

doing better, but I don't think I will ever relax. She has a large group of

friends (all types:) that rallied behind her and are always there for her.

I no longer do a load of black clothes. She is FINALLY out of that stage.

Alyssa has a boyfriend of two months (longest relationship yet) and that

comes with a new ball game of worries! I am sure parents of older children can

understand. She just had a mole (re growth from previous biopsy) removed

yesterday and has a fairly large suture line. I was surprised how much they

took, but I told them I didn't' want it to grow ever again.

is doing great and working on a production at school in which she

has some spoken lines. She is excited for it to open. She continues to grow

on her growth hormone and they are starting to say she may be done with it

soon. She will love not having daily injections.

How is Aundrea doing today? Any news on either rheumy? How's the practice

going? I hope it's busy.

Eighty degree weather, WOW. I think we got up to 6 degrees today, much

better than the -20!

Take care.

Patty

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