Re: Jaye update

[Guest guest]

Veri,

I'm glad to hear Jaye is doing well, all things considered.

We didn't see the rheumy this time around-Madi's been doing well, so

we go back in Dec.

I'm so glad you said something about the " non-chalant-ness " from the

rheumy. I have been struggling with this from the get-go, and have

been wondering if it was just me or the fact that Madi is really

young or what! She barely touches her and all she does to check her

out is have her walk down the hall and have me flatten out her

hands/bend her wrists. I guess I was expecting her to check each

joint each appt., and be a little more thorough. I've seriously

thought of going to another rheumy, but with Madi so young, I feel

the " pediatric " is better than a regular at this point, and I'm not

sure our insurance would pay out of state. Anyway, I've discussed

the rheumy and my (for lack of a better word) " distrust " of her with

our ped, and he still felt she was the best choice-and I trust his

opinion. So we continue as is. (And I wish we had a ped rheumy like

out ped!)

Hoping Jaye continues to do well and she can get off her meds

in April!

Tracey & Madi

>

> Well we saw the rheumy today and all is well with Jaye. She

has been

> doing well only having minor pain occasionally with major weather

changes but

> it only lasts a day or two. So the doctor said maybe in April if

all is well

> still, we can take her off her med's. I am not really impressed

with this

> doctor. I think that I am just so used to her pediatrician and her

neurologist

> that are both very thourough with their exams and the rheumy is

not.

> After she said that we should come back in six months and started

to leave

> the room I had to ask if we should be going to the eye doctor again

or not and

> she said oh yeah, go once a year. And then she left. I then asked

if there

> isn't blood work that needs to be done but she was gone and the

therapist said

> yes that should also be done once a year. Maybe there is nothing

to watch for

> with what is on but I am concerned with her taking

something regular

> that there might be something to watch for. Heck, I don't know

what I am

> looking for here. So we left the office without orders for

anything. It is not

> that I want them to find something wrong, because I don't. But

this is my baby

> and I do not want to miss something.

>

> Veri & Jaye 12 poly

>

>

>

>

[Guest guest]

Hi Veri:

It was so nice to read some good news!! I am so glad to hear Jaye is

doing so well. Refresh my memory as to what meds she is on. I would think at

the very least they should be checking her liver functions every 6 months. I

would think more often if she's on anything stronger than an NSAID (but I'm new

at all this and may be wrong). Hannah's eye doctor told us that he wants to see

Hannah every 6 months and we don't have a firm diagnosis yet.

Keep us updated. How great would it be to get off meds?

Beth (Hannah, unspecified arthritis; asthma; gerd)

Happy Thoughts...Be Well

veristroud@... wrote:

Well we saw the rheumy today and all is well with Jaye. She has

been

doing well only having minor pain occasionally with major weather changes but

it only lasts a day or two. So the doctor said maybe in April if all is well

still, we can take her off her med's. I am not really impressed with this

doctor. I think that I am just so used to her pediatrician and her neurologist

that are both very thourough with their exams and the rheumy is not.

After she said that we should come back in six months and started to leave

the room I had to ask if we should be going to the eye doctor again or not and

she said oh yeah, go once a year. And then she left. I then asked if there

isn't blood work that needs to be done but she was gone and the therapist said

yes that should also be done once a year. Maybe there is nothing to watch for

with what is on but I am concerned with her taking something regular

that there might be something to watch for. Heck, I don't know what I am

looking for here. So we left the office without orders for anything. It is not

that I want them to find something wrong, because I don't. But this is my baby

and I do not want to miss something.

Veri & Jaye 12 poly

[Guest guest]

-Veri,

I inderstand completely about not wanting to miss something. I am

happy to read that Jaye is doing well though. it will be

awesome to be comopletely off meds. What a dream come true.

hugs Helen and (9,systemic)

-- In , veristroud@... wrote:

>

> Well we saw the rheumy today and all is well with Jaye. She

has been

> doing well only having minor pain occasionally with major weather

changes but

> it only lasts a day or two. So the doctor said maybe in April if

all is well

> still, we can take her off her med's. I am not really impressed

with this

> doctor. I think that I am just so used to her pediatrician and

her neurologist

> that are both very thourough with their exams and the rheumy is

not.

> After she said that we should come back in six months and started

to leave

> the room I had to ask if we should be going to the eye doctor

again or not and

> she said oh yeah, go once a year. And then she left. I then asked

if there

> isn't blood work that needs to be done but she was gone and the

therapist said

> yes that should also be done once a year. Maybe there is nothing

to watch for

> with what is on but I am concerned with her taking

something regular

> that there might be something to watch for. Heck, I don't know

what I am

> looking for here. So we left the office without orders for

anything. It is not

> that I want them to find something wrong, because I don't. But

this is my baby

> and I do not want to miss something.

>

> Veri & Jaye 12 poly

>

>

>

>

[Guest guest]

Veri,

I am glad it all went well. I have been keeping a eye on the weather as

here in Georgia we are setting record Highs here. Today was 76 degrees here

and sunny. I heard some states were in bad shape and the pictures I am seeing

is a bad Ice storm. I feel for all in the path of that Ice Storm.

Hope your nerves have calmed down

Robbin

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

When I first started reading this I thought oh no, but it sounds like

all turned out ok. Sorry to hear that Jaye is still not doing

as well as you had hoped, but glad that you still like the rheumy.

Glad you made it back home safely before the storm hit hard. (I

would have cancelled I'm such a chicken.)

((hugs))

Tracey and Madi

>

> Well we made another trip to Children's Mercy in Kansas City today

to see the

> rheumy and I was as impressed with his this time as the first time.

When I

> got there though I thought things might not go so well. We were not

on their

> schedule. I just said " excuse me, what did you say " ? I had just

driven nearly

> 200 miles for an appointment that they had scheduled for me and I

was not on

> their list. HMMMM.

> They did however have us scheduled for the opthamologist

appointment. And

> they quickly assured me that the rheumy would see us we just might

have to wait a

> bit. I took a deep breath and said ok, just please keep in mind

that I have

> 200 miles to drive to get home and we are predicted for the ice

storm of the

> year today. We got in to see him almost right on time, I think he

missed his

> lunch. When he came in he was as appologetic as the nurse was

before him and he

> gave us a full exam and never acted like he was in the least bit of

a hurry. I

> love this rheumy!!!

>

> Jaye is not doing as good as he would like to see her so he

has added

> the plaquinil again to her meds each day. When we put her on it

before with

> the celebrex it helped so now that she is on naproxin we will add

it and pray

> that it has the same effect as the first time. After we left his

office we

> went to the other wing of the hospital and met with the opth. They

were so nice

> as well, checked the weather for us a few times and kept us

updated. That

> appointment was long but they did so many things. She tested

for things that

> the other opth did not, but then the other opth we had used only

has one or

> two other JRA patients and is not pediatric either. I like the

other opth but

> this gal was just so much more thourough.

>

> We are to go back in three months to the rheumy and in six for the

opth. I

> love that we get it done on the same day at the same place. We

drove home the

> first 80 miles we had dry roads but the rest of the way it was

raining and the

> temp was between 29 & 31 the entire way. Cold rain, wet roads and

speeding semi

> trucks about gave me a nervous breakdown but we are home.

Fortunatly we did

> not have slick roads but I was quite nervous. They still say we are

to have a

> major ice storm tonight I just thank God that it did not turn to

ice until

> after we got home safe.

>

> Veri & Jaye 13 poly

>

>

> **************************************

> See AOL's top

> rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

>

[Guest guest]

Veri, I am soooo glad to hear you made it home safely. What a day to be

traveling. Yes, I like Dr. Hoeltzel also. It was sure nice of them to get you in

and out so quickly. I absolutely hate driving in weather like this. School is

cancelled for tomorrow here. The kids are happy! I pray the the new med helps

Jaye. Elaney's arthritis has not been much of a problem lately. I am very

thankful for this. Anyway, take care and stay off the ice. --- &

Elaney

veristroud@... wrote: Well we made another trip to Children's Mercy

in Kansas City today to see the

rheumy and I was as impressed with his this time as the first time. When I

got there though I thought things might not go so well. We were not on their

schedule. I just said " excuse me, what did you say " ? I had just driven nearly

200 miles for an appointment that they had scheduled for me and I was not on

their list. HMMMM.

They did however have us scheduled for the opthamologist appointment. And

they quickly assured me that the rheumy would see us we just might have to wait

a

bit. I took a deep breath and said ok, just please keep in mind that I have

200 miles to drive to get home and we are predicted for the ice storm of the

year today. We got in to see him almost right on time, I think he missed his

lunch. When he came in he was as appologetic as the nurse was before him and he

gave us a full exam and never acted like he was in the least bit of a hurry. I

love this rheumy!!!

Jaye is not doing as good as he would like to see her so he has added

the plaquinil again to her meds each day. When we put her on it before with

the celebrex it helped so now that she is on naproxin we will add it and pray

that it has the same effect as the first time. After we left his office we

went to the other wing of the hospital and met with the opth. They were so nice

as well, checked the weather for us a few times and kept us updated. That

appointment was long but they did so many things. She tested for things

that

the other opth did not, but then the other opth we had used only has one or

two other JRA patients and is not pediatric either. I like the other opth but

this gal was just so much more thourough.

We are to go back in three months to the rheumy and in six for the opth. I

love that we get it done on the same day at the same place. We drove home the

first 80 miles we had dry roads but the rest of the way it was raining and the

temp was between 29 & 31 the entire way. Cold rain, wet roads and speeding semi

trucks about gave me a nervous breakdown but we are home. Fortunatly we did

not have slick roads but I was quite nervous. They still say we are to have a

major ice storm tonight I just thank God that it did not turn to ice until

after we got home safe.

Veri & Jaye 13 poly

**************************************

See AOL's top

rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Veri:

So glad you had a good visit. I hope the new med kicks in quickly and works

wonderfully. We are being hit with that ice storm today. We got 5 inches of

snow overnight and it was turning over as I drove to work this morning. The

kids are off of school today, so at least I know they home and safe.

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

Sending prayers & happy thoughts,

Beth :-)

Jaye update

Well we made another trip to Children's Mercy in Kansas City today to see the

rheumy and I was as impressed with his this time as the first time. When I

got there though I thought things might not go so well. We were not on their

schedule. I just said " excuse me, what did you say " ? I had just driven nearly

200 miles for an appointment that they had scheduled for me and I was not on

their list. HMMMM.

They did however have us scheduled for the opthamologist appointment. And

they quickly assured me that the rheumy would see us we just might have to wait

a

bit. I took a deep breath and said ok, just please keep in mind that I have

200 miles to drive to get home and we are predicted for the ice storm of the

year today. We got in to see him almost right on time, I think he missed his

lunch. When he came in he was as appologetic as the nurse was before him and he

gave us a full exam and never acted like he was in the least bit of a hurry. I

love this rheumy!!!

Jaye is not doing as good as he would like to see her so he has added

the plaquinil again to her meds each day. When we put her on it before with

the celebrex it helped so now that she is on naproxin we will add it and pray

that it has the same effect as the first time. After we left his office we

went to the other wing of the hospital and met with the opth. They were so nice

as well, checked the weather for us a few times and kept us updated. That

appointment was long but they did so many things. She tested for things

that

the other opth did not, but then the other opth we had used only has one or

two other JRA patients and is not pediatric either. I like the other opth but

this gal was just so much more thourough.

We are to go back in three months to the rheumy and in six for the opth. I

love that we get it done on the same day at the same place. We drove home the

first 80 miles we had dry roads but the rest of the way it was raining and the

temp was between 29 & 31 the entire way. Cold rain, wet roads and speeding semi

trucks about gave me a nervous breakdown but we are home. Fortunatly we did

not have slick roads but I was quite nervous. They still say we are to have a

major ice storm tonight I just thank God that it did not turn to ice until

after we got home safe.

Veri & Jaye 13 poly

************ ********* ********* ********

See AOL's top

rated recipes

(http://food. aol.com/top- rated-recipes? NCID=aoltop00030 000000004)

[Guest guest]

Tracey,

?

I wanted to cancel and reschedule but was not sure how to get both of the

appoitments scheduled between now and the end of the year. We have maxed out our

deductable and so these appointments will be paid by insurance at 100%. So after

spending time in prayer I felt confident that we would make it ok. I will admit

that the first 60 miles or so that I drove I was a bit above the speed limit. I

figured I wanted to make it as far as possible before the rain started. I had to

put my wings away about thiry miles on the other side of Emporia. Fortunatly

Jaye was sleeping or she would have been certain to share with me how

fast I was going and she would have given several update each time we passed the

speed limit sign. Actually, yesterday was a rough day for her she was exhausted

all day, a sign of what the changing weather does to her. She slept all the way

to KC and all the way home. I was bored and wanted to talk to someone but I just

let her rest. Today she is feeling a bit better but she has not been out of the

house. I was glad that they canceled school today.

Veri & Jaye 13 poly

Re: Jaye update

When I first started reading this I thought oh no, but it sounds like

all turned out ok. Sorry to hear that Jaye is still not doing

as well as you had hoped, but glad that you still like the rheumy.

Glad you made it back home safely before the storm hit hard. (I

would have cancelled I'm such a chicken.)

((hugs))

Tracey and Madi

>

> Well we made another trip to Children's Mercy in Kansas City today

to see the

> rheumy and I was as impressed with his this time as the first time.

When I

> got there though I thought things might not go so well. We were not

on their

> schedule. I just said " excuse me, what did you say " ? I had just

driven nearly

> 200 miles for an appointment that they had scheduled for me and I

was not on

> their list. HMMMM.

> They did however have us scheduled for the opthamologist

appointment. And

> they quickly assured me that the rheumy would see us we just might

have to wait a

> bit. I took a deep breath and said ok, just please keep in mind

that I have

> 200 miles to drive to get home and we are predicted for the ice

storm of the

> year today. We got in to see him almost right on time, I think he

missed his

> lunch. When he came in he was as appologetic as the nurse was

before him and he

> gave us a full exam and never acted like he was in the least bit of

a hurry. I

> love this rheumy!!!

>

> Jaye is not doing as good as he would like to see her so he

has added

> the plaquinil again to her meds each day. When we put her on it

before with

> the celebrex it helped so now that she is on naproxin we will add

it and pray

> that it has the same effect as the first time. After we left his

office we

> went to the other wing of the hospital and met with the opth. They

were so nice

> as well, checked the weather for us a few times and kept us

updated. That

> appointment was long but they did so many things. She tested

for things that

> the other opth did not, but then the other opth we had used only

has one or

> two other JRA patients and is not pediatric either. I like the

other opth but

> this gal was just so much more thourough.

>

> We are to go back in three months to the rheumy and in six for the

opth. I

> love that we get it done on the same day at the same place. We

drove home the

> first 80 miles we had dry roads but the rest of the way it was

raining and the

> temp was between 29 & 31 the entire way. Cold rain, wet roads and

speeding semi

> trucks about gave me a nervous breakdown but we are home.

Fortunatly we did

> not have slick roads but I was quite nervous. They still say we are

to have a

> major ice storm tonight I just thank God that it did not turn to

ice until

> after we got home safe.

>

> Veri & Jaye 13 poly

>

>

> **************************************

> See AOL's top

> rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

>

[Guest guest]

Beth,

I hope you do not get as much ice as we have here in Kansas. We are at the south

end of this stuff and it is much worse to the north of us here in Kansas. But

Oklahoma got alot more then we have so far and they are in really bad shape. It

is still raining here and with the temp dropping again tonight we will see how

much more of it is ice by morning. My kids are hoping for a second day off of

school. Jaye generally wants to be out in the ice and snow for fun times

but I had no trouble keeping her in today. Actually that means she is not

feeling well but it also means that I have less to worry about her.

Veri & Jaye 13 poly

Re: Jaye update

Veri:

So glad you had a good visit. I hope the new med kicks in quickly and works

wonderfully. We are being hit with that ice storm today. We got 5 inches of snow

overnight and it was turning over as I drove to work this morning. The kids are

off of school today, so at least I know they home and safe.

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

Sending prayers & happy thoughts,

Beth :-)

Jaye update

Well we made another trip to Children's Mercy in Kansas City today to see the

rheumy and I was as impressed with his this time as the first time. When I

got there though I thought things might not go so well. We were not on their

schedule. I just said " excuse me, what did you say " ? I had just driven nearly

200 miles for an appointment that they had scheduled for me and I was not on

their list. HMMMM.

They did however have us scheduled for the opthamologist appointment. And

they quickly assured me that the rheumy would see us we just might have to wait

a

bit. I took a deep breath and said ok, just please keep in mind that I have

200 miles to drive to get home and we are predicted for the ice storm of the

year today. We got in to see him almost right on time, I think he missed his

lunch. When he came in he was as appologetic as the nurse was before him and he

gave us a full exam and never acted like he was in the least bit of a hurry. I

love this rheumy!!!

Jaye is not doing as good as he would like to see her so he has added

the plaquinil again to her meds each day. When we put her on it before with

the celebrex it helped so now that she is on naproxin we will add it and pray

that it has the same effect as the first time. After we left his office we

went to the other wing of the hospital and met with the opth. They were so nice

as well, checked the weather for us a few times and kept us updated. That

appointment was long but they did so many things. She tested for things

that

the other opth did not, but then the other opth we had used only has one or

two other JRA patients and is not pediatric either. I like the other opth but

this gal was just so much more thourough.

We are to go back in three months to the rheumy and in six for the opth. I

love that we get it done on the same day at the same place. We drove home the

first 80 miles we had dry roads but the rest of the way it was raining and the

temp was between 29 & 31 the entire way. Cold rain, wet roads and speeding semi

trucks about gave me a nervous breakdown but we are home. Fortunatly we did

not have slick roads but I was quite nervous. They still say we are to have a

major ice storm tonight I just thank God that it did not turn to ice until

after we got home safe.

Veri & Jaye 13 poly

************ ********* ********* ********

See AOL's top

rated recipes

(http://food. aol.com/top- rated-recipes? NCID=aoltop00030 000000004)

[Guest guest]

Veri

I have issues with my optic nerves and a pituitary tumor, and I have to do

visual field exams once a year (used to be twice a year, thank goodness, not any

more!). Anyway, they would make me take my glasses off and I am soooo

nearsighted I couldn't see enough to find the little points of light they have

you looking for. I had to squint. By the time they were done with me, I had a

huge headache and water streaming out of my eyes from eye strain. Probably the

last 2 years, they finally started using a lens in front of my eye and adjusting

it so I could actually see without having to squint! The test is so much easier

now. I still hate it, but not nearly as bad! Just thought I would share my

experience. Hope ALL of you start feeling better! So sorry to hear that your

joints are bothering you. I guess us moms with issues of our own have started

our own club!

and Rob 19 JAS

Jaye Update

> Well I guess I will try to send a note and see if my computer

> will cooperate with me long enough to get this sent. The girls

> have spent enough time on this computer this summer downloading

> stuff and now it is so slow and likes to lock up without

> notice.?

>

> We had or visit to the opthamologist a couple of weeks ago. The

> trip was uneventful and actually relaxing. We were able to get a

> room at the Marriott across the street from Children's Mercy and

> only had to spend $39 plus tax for a total of $45 per night.

> Very very nice.?? Jaye had to repeat the field visual

> test and did not do much better this time then last. The opth,

> is not sure how much of the test she is failing because she

> hates the test or if she acutally has a problem. Jaye

> promised me that she tried hard to do it. Since she had a good

> test the first time, I am fearful that? something is just not

> right. The opth also told me the same. We have to go back in six

> months to repeat it. If she can get a couple of good tests then

> we will not have to go back for a year unless other issues

> develope. We do though have to be back at Children's Mercy in

> five weeks to see the Rheumy. Jaye seems to be feeling

> very good now. She still has morning stiffness but not for

> too long. She promises me that she is taking her med's but

> when a thirty day supply lasts nearly 45 days I know she is

> missing more then she should be. GRRRR. We went through this

> last year during the summer months and then fall came and she

> really struggled. So we will see how she is doing in October.

> The last three years October has been when she started to

> struggle and it always lasts through February or March I think.

> She is 14 and in charge so I have to be patient and just try to

> encourage her. For now, I have more joint issues then she does

> and I take my meds like clockwork.

>

> Veri & Jaye 14 poly

>

>

>

[Guest guest]

Thanks , I guess I have had so many different issues for most of my life

that I generally do not even think about mine.Or if I think about them I don't

generally mention them. I think because of my own issues I have been able to

help Jaye and we do not dwell on it, we just push past it and keep going.

I am just at a point now that I am possibly going to have to do something for my

thumb and hand because it is starting to affect my ablility to type and work.

Since about 75% or 80% of my job is on the computer it certainly affects it. I

was glad to read that Rob is doing well and you have had good reports. I have a

19 year old that has no health issues but has decided that fun is more important

then working and being responsible. You might never have thought that someone

would prefer to have to deal with the struggles you have had with Rob as opposed

to a healthly lazy child. My son is a good kid, has a big heart, sweet and

loving. But also a totally irresponsible father at age 19.

Veri & Jaye 14 poly

Re: Jaye Update

Veri

I have issues with my optic nerves and a pituitary tumor, and I have to do

visual field exams once a year (used to be twice a year, thank goodness, not any

more!). Anyway, they would make me take my glasses off and I am soooo

nearsighted I couldn't see enough to find the little points of light they have

you looking for. I had to squint. By the time they were done with me, I had a

huge headache and water streaming out of my eyes from eye strain. Probably the

last 2 years, they finally started using a lens in front of my eye and adjusting

it so I could actually see without having to squint! The test is so much easier

now. I still hate it, but not nearly as bad! Just thought I would share my

experience. Hope ALL of you start feeling better! So sorry to hear that your

joints are bothering you. I guess us moms with issues of our own have started

our own club!

and Rob 19 JAS

Jaye Update

> Well I guess I will try to send a note and see if my computer

> will cooperate with me long enough to get this sent. The girls

> have spent enough time on this computer this summer downloading

> stuff and now it is so slow and likes to lock up without

> notice.?

>

> We had or visit to the opthamologist a couple of weeks ago. The

> trip was uneventful and actually relaxing. We were able to get a

> room at the Marriott across the street from Children's Mercy and

> only had to spend $39 plus tax for a total of $45 per night.

> Very very nice.?? Jaye had to repeat the field visual

> test and did not do much better this time then last. The opth,

> is not sure how much of the test she is failing because she

> hates the test or if she acutally has a problem. Jaye

> promised me that she tried hard to do it. Since she had a good

> test the first time, I am fearful that? something is just not

> right. The opth also told me the same. We have to go back in six

> months to repeat it. If she can get a couple of good tests then

> we will not have to go back for a year unless other issues

> develope. We do though have to be back at Children's Mercy in

> five weeks to see the Rheumy. Jaye seems to be feeling

> very good now. She still has morning stiffness but not for

> too long. She promises me that she is taking her med's but

> when a thirty day supply lasts nearly 45 days I know she is

> missing more then she should be. GRRRR. We went through this

> last year during the summer months and then fall came and she

> really struggled. So we will see how she is doing in October.

> The last three years October has been when she started to

> struggle and it always lasts through February or March I think.

> She is 14 and in charge so I have to be patient and just try to

> encourage her. For now, I have more joint issues then she does

> and I take my meds like clockwork.

>

> Veri & Jaye 14 poly

>

>

>

[Guest guest]

Veri:

How exciting that your parents are here.  How fun!!!  Sounds like overall she is

doing well.  Let us know how pain managment goes and what he/she has to say.

Happy Mother's Day!!!

 

Beth & Hannah,12, probable OA secondary to Hypermolity Joint Syndrome;  asthma;

vit d deficiency

" We can't direct the wind, but we can adjust our sails " -author unknown

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Saturday, May 9, 2009 8:45:47 AM

Subject: Jaye update

Jaye had her rheumy and opth appointment in Kansas City a week and a half

ago.? The rheumy was impressed with how she looks but perplexed with her new

complaints. She had no active arthritis he said and he noted no active

swelling.? She is back to complaining of the aches and exhaustion it does not

stop her but it certainly is slowing her down.? Of course I wonder if it is

related to the combination of the arthritis med's with the seizure meds.?

Yesterday she commented that her ankle hurt but that is normal it comes and goes

on a regular basis. But by early evening she was limping and when we got home

the ankle is swollen. Not bad so I hope it goes away quickly.? When we were in

KC the rheumy suggested we go to the pain management clinic to help with her

newest symtom and to get some good PT advice.? He also said that the pain

management doctor could possibly diagnose her new symptom since he does not

believe it to be JIA related.? We are to see

the pain management in about a month and will see the rheumy again at that

time. So we will go with a positive attitude at least once.? Since the drive is

3 hours each way we can not make too many more appointments there without them

being connected to her other appointments with the rheumy and/or opth.? This

time her opth was much happier with her results from the field vision test and

we do not go back for six months to see her. Yea!! She hates the field vision

test. This time they also checked the pressure in her eyes.? My mother has high

pressure as did my grandmother and then my grandmothers progressed into

glaucoma.? Many of my grandmothers siblings and neices have had glaucoma so we

will have to watch for that on Jaye.?Only one and a half weeks left of

school for us this year, wow where did the time go..

Veri & Jaye 15 poly

[Guest guest]

Hi Veri,

       I am sorry that is having some issues with pain. My camera has

become my best friend, it has taken me quite awhile to learn how to use it, I

try really hard to take as many pictures of swollen joints as I can!! Maggie

never used to swell while in the doctor's office......just waited until we got

home!! Now she just has flaring joints all of the time so it doesn't seem to

matter. It can be very frustrating though!!

       I am so glad to hear about her eyes.  Hopefully you will get the same

results soon with the Pain Team as well. Sometimes another set of eyes and ears

can really help, we will say some extra prayers for that they can come up

with some sort of plan for her to ease her pain.

     Hugs from Iowa!!

   Diane, Maggie and Ally

From: veristroud@... <veristroud@...>

Subject: Jaye update

Date: Saturday, May 9, 2009, 1:45 PM

Jaye had her rheumy and opth appointment in Kansas City a week and

a half ago.? The rheumy was impressed with how she looks but perplexed with her

new complaints. She had no active arthritis he said and he noted no active

swelling.? She is back to complaining of the aches and exhaustion it does not

stop her but it certainly is slowing her down.? Of course I wonder if it is

related to the combination of the arthritis med's with the seizure meds.?

Yesterday she commented that her ankle hurt but that is normal it comes and goes

on a regular basis. But by early evening she was limping and when we got home

the ankle is swollen. Not bad so I hope it goes away quickly.? When we were in

KC the rheumy suggested we go to the pain management clinic to help with her

newest symtom and to get some good PT advice.? He also said that the pain

management doctor could possibly diagnose her new symptom since he does not

believe it to be JIA related.? We are to

see the pain management in about a month and will see the rheumy again at that

time. So we will go with a positive attitude at least once.? Since the drive is

3 hours each way we can not make too many more appointments there without them

being connected to her other appointments with the rheumy and/or opth.? This

time her opth was much happier with her results from the field vision test and

we do not go back for six months to see her. Yea!! She hates the field vision

test. This time they also checked the pressure in her eyes.? My mother has high

pressure as did my grandmother and then my grandmothers progressed into

glaucoma.? Many of my grandmothers siblings and neices have had glaucoma so we

will have to watch for that on Jaye.?Only one and a half weeks left of

school for us this year, wow where did the time go..

Veri & Jaye 15 poly

[Guest guest]

So sorry to hear Jaye is having problems. I would bet it is

related to the arthritis, unless you know she injured it somehow.

Perhaps taking some extra NSAID's would help at least in the short term,

to make her more comfortable. Let us know what the rheumy has to say.

Hopefully he can offer something that will help. At least she has the

week to get it somewhat under control before her trip. Indy is a real

nice town to visit; I'm sure she has lots of things planned.

Keep us updated, Michele ( 22, spondy)

________________________________

From: [mailto: ] On

Behalf Of veristroud@...

Sent: Tuesday, July 21, 2009 12:51 PM

Subject: Jaye update

Well we are still waiting to hear from the Pain management clinic. I

kept waiting to hear from them before I scheduled the next rheumy appt

for and now am regretting that decision.? She is frustrated

because she aches and is stiff nearly all the time. Now her foot is

swollen and I can only assume that it is related to arthur.? Yesterday

morning she woke up and her foot hurt to walk and she called me at work

to tell me it was not good. On my lunch I noticed that the soft area

just about an inch from her ankle looked like there was a ball under

it.? By the time I got home from work her entire foot was swollen. She

had said that early in the day it hurt to walk but she could walk on her

toes and the front part of her foot.? By last night that was out, her

entire foot hurt bad.? today her entire foot is still swollen.? GRRRR.?

She is getting ready to take her vacation and fly to Indianapolis to see

my sister for a week. I hate sending her in pain but she is going to

go.? My sister will take good care of her if Jaye allows it.?

Jaye will probably never let my sister know she is in pain. that

is just how she is.? So I am calling the rheumy today andseeing about

the change in medications that he suggested at our last visit.? We have

to do somehting.?

Veri & Jaye 15 poly

[Guest guest]

I did talk to the rheumy's office today and they wanted to have see her

primary or take her to immediate care. I got her in today and they took xrays of

her foot to see what might be going on. the rheumy wanted to make sure and rule

out an infection or something but the foot is not red or warm. It is still

swollen but not real bad. She can walk on it but it really hurts her.? I did not

get her in with her ped but did get her in with a ARNP and she checked her foot

real well. she seems to think it is probably just the flat footedness of

but not sure. She wanted to rule out a stress fracture and also to check to see

if there is any active arthritis in her foot.? Tomorrow i am supposed to talk to

the rheumy's nurse again and let her know how she is doing. We are changing her

med at this time. Not sure of the name of it but I will pick it up tomorrow at

the pharmacy.? Jaye told the ARNP that this is the pain that she has on a

regular basis but generally only has it for 5 to 10 minutes at a time. This time

it has been over two days so we will see.?

Veri & Jaye 15 poly

Jaye update

Well we are still waiting to hear from the Pain management clinic. I

kept waiting to hear from them before I scheduled the next rheumy appt

for and now am regretting that decision.? She is frustrated

because she aches and is stiff nearly all the time. Now her foot is

swollen and I can only assume that it is related to arthur.? Yesterday

morning she woke up and her foot hurt to walk and she called me at work

to tell me it was not good. On my lunch I noticed that the soft area

just about an inch from her ankle looked like there was a ball under

it.? By the time I got home from work her entire foot was swollen. She

had said that early in the day it hurt to walk but she could walk on her

toes and the front part of her foot.? By last night that was out, her

entire foot hurt bad.? today her entire foot is still swollen.? GRRRR.?

She is getting ready to take her vacation and fly to Indianapolis to see

my sister for a week. I hate sending her in pain but she is going to

go.? My sister will take good care of her if Jaye allows it.?

Jaye will probably never let my sister know she is in pain. that

is just how she is.? So I am calling the rheumy today andseeing about

the change in medications that he suggested at our last visit.? We have

to do somehting.?

Veri & Jaye 15 poly

[Guest guest]

Fabulous news!!!!!!

No, don't rock the boat. Stay the course and Carpe diem!!!

Sent from my iPhone

On Feb 7, 2011, at 5:58 PM, veristroud@... wrote:

>

> Hello all,

>

> Just thought I would let you all know that things are going well. We saw the

rheumy today and we all are pleased to announce that things are going very well.

He was pleased to find only minor swelling in one of Jaye's knees. We are

so thrilled with the Enbrel and how it is helping so much. Two weekends in a

row, we have spent a full day on our feet and Jaye has kept up. Last

weekend we had gone to Joplin to spend some time with one of my brothers. He is

stationed in Japan but was baack in the states for schooling. We went to the

mall, played putt putt, walked quite a bit, went to the motel for a nap and then

went bowling. Jaye said she had more fun last Saturday then she can

remember ever having. This weekend we went to KC for the appt and so had to go

up ahead of time and spent time shopping. We walked the mall for four or five

hours and out to eat before going back to the motel. She never complained at

all. NONE!!!! Now this was her birthday shopping excursion so she was trying on

clothes and shoes so that is exciting for her, but also that is exhausting for

anyone. WE LOVE ENBREL!!!! The rheumy said we are going to leave her meds where

they are at this point but will begin to wein her off of something eventually. I

am happy to stay the course we are on now. I was actually hoping that he would

not try to wein yet because I do not want to rock the boat. Jaye has been

on Enbrel now for 8 weeks and we are EXCITED. She has a bit of pain in one wrist

but no swelling and that was the only joint she had any pain in at all today.

That is amazing. I do not think we have ever gone into the appointment with just

a little pain in only one joint. I just had to share our excitement.

>

> Veri & Jaye 17 poly

>

>

[Guest guest]

WOO HOO!!!!! So GLAD to hear the awesome news!!! I am so happy that Enbrel is

doing so well for her. Isn't it amazing to watch the miracle unfold? Keep it up

Jaye!! Welcome back to being able to live your life!!!! PRAISE GOD!

and Rob 21

Jaye Update

>

> Hello all,

>

> Just thought I would let you all know that things are going

> well. We saw the rheumy today and we all are pleased to announce

> that things are going very well. He was pleased to find

> only minor swelling in one of Jaye's knees. We are so

> thrilled with the Enbrel and how it is helping so much.

> Two weekends in a row, we have spent a full day on our feet and

> Jaye has kept up. Last weekend we had gone to

> Joplin to spend some time with one of my brothers. He is

> stationed in Japan but was baack in the states for

> schooling. We went to the mall, played putt putt, walked

> quite a bit, went to the motel for a nap and then went bowling.

> Jaye said she had more fun last Saturday then she can

> remember ever having. This weekend we went to KC for the appt

> and so had to go up ahead of time and spent time shopping. We

> walked the mall for four or five hours and out to eat before

> going back to the motel. She never complained at all.

> NONE!!!! Now this was her birthday shopping

> excursion so she was trying on clothes and shoes so that

> is exciting for her, but also that is exhausting for

> anyone. WE LOVE ENBREL!!!! The rheumy said we are going to

> leave her meds where they are at this point but will begin to

> wein her off of something eventually. I am happy to stay

> the course we are on now. I was actually hoping that he

> would not try to wein yet because I do not want to rock the

> boat. Jaye has been on Enbrel now for 8 weeks and

> we are EXCITED. She has a bit of pain in one wrist but no

> swelling and that was the only joint she had any pain in at all

> today. That is amazing. I do not think we have ever gone

> into the appointment with just a little pain in only one joint.

> I just had to share our excitement.

>

> Veri & Jaye 17 poly

>

>

>

>

>

>

[Guest guest]

Re: Jaye Update

WOO HOO!!!!! So GLAD to hear the awesome news!!! I am so happy that Enbrel is

doing so well for her. Isn't it amazing to watch the miracle unfold? Keep it up

Jaye!! Welcome back to being able to live your life!!!! PRAISE GOD!

and Rob 21

Jaye Update

>

> Hello all,

>

> Just thought I would let you all know that things are going

> well. We saw the rheumy today and we all are pleased to announce

> that things are going very well. He was pleased to find

> only minor swelling in one of Jaye's knees. We are so

> thrilled with the Enbrel and how it is helping so much.

> Two weekends in a row, we have spent a full day on our feet and

> Jaye has kept up. Last weekend we had gone to

> Joplin to spend some time with one of my brothers. He is

> stationed in Japan but was baack in the states for

> schooling. We went to the mall, played putt putt, walked

> quite a bit, went to the motel for a nap and then went bowling.

> Jaye said she had more fun last Saturday then she can

> remember ever having. This weekend we went to KC for the appt

> and so had to go up ahead of time and spent time shopping. We

> walked the mall for four or five hours and out to eat before

> going back to the motel. She never complained at all.

> NONE!!!! Now this was her birthday shopping

> excursion so she was trying on clothes and shoes so that

> is exciting for her, but also that is exhausting for

> anyone. WE LOVE ENBREL!!!! The rheumy said we are going to

> leave her meds where they are at this point but will begin to

> wein her off of something eventually. I am happy to stay

> the course we are on now. I was actually hoping that he

> would not try to wein yet because I do not want to rock the

> boat. Jaye has been on Enbrel now for 8 weeks and

> we are EXCITED. She has a bit of pain in one wrist but no

> swelling and that was the only joint she had any pain in at all

> today. That is amazing. I do not think we have ever gone

> into the appointment with just a little pain in only one joint.

> I just had to share our excitement.

>

> Veri & Jaye 17 poly

>

>

>

>

>

>

[Guest guest]

I am sooo happy for you and Jaye!! I pray that this will put her

into remission and all of the bad stuff is now in the past! {{hugs}}

, Amber (16) Psoriatic

In a message dated 2/7/2011 8:58:20 P.M. Eastern Standard Time,

veristroud@... writes:

Hello all,

Just thought I would let you all know that things are going well. We saw

the rheumy today and we all are pleased to announce that things are going

very well. He was pleased to find only minor swelling in one of Jaye's

knees. We are so thrilled with the Enbrel and how it is helping so much.

Two weekends in a row, we have spent a full day on our feet and Jaye

has kept up. Last weekend we had gone to Joplin to spend some time with one

of my brothers. He is stationed in Japan but was baack in the states for

schooling. We went to the mall, played putt putt, walked quite a bit, went

to the motel for a nap and then went bowling. Jaye said she had more

fun last Saturday then she can remember ever having. This weekend we went

to KC for the appt and so had to go up ahead of time and spent time

shopping. We walked the mall for four or five hours and out to eat before going

back to the motel. She never complained at all. NONE!!!! Now this was her

birthday shoppi ng excursion so she was trying on clothes and shoes so that is

exciting for her, but also that is exhausting for anyone. WE LOVE

ENBREL!!!! The rheumy said we are going to leave her meds where they are at

this

point but will begin to wein her off of something eventually. I am happy to

stay the course we are on now. I was actually hoping that he would not try to

wein yet because I do not want to rock the boat. Jaye has been on

Enbrel now for 8 weeks and we are EXCITED. She has a bit of pain in one wrist

but no swelling and that was the only joint she had any pain in at all

today. That is amazing. I do not think we have ever gone into the appointment

with just a little pain in only one joint. I just had to share our

excitement.

Veri & Jaye 17 poly

[Non-text portions of this message have been removed]

[Guest guest]

Happy dance!!!  What a great birthday present for her!!

 Beth & Hannah

Life is one grand, sweet song, so start the music.  ~ Reagan

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Mon, February 7, 2011 7:58:06 PM

Subject: Jaye Update

 

Hello all,

Just thought I would let you all know that things are going well. We saw the

rheumy today and we all are pleased to announce that things are going very well.

He was pleased to find only minor swelling in one of Jaye's knees. We are

so thrilled with the Enbrel and how it is helping so much. Two weekends in a

row, we have spent a full day on our feet and Jaye has kept up. Last

weekend we had gone to Joplin to spend some time with one of my brothers. He is

stationed in Japan but was baack in the states for schooling. We went to the

mall, played putt putt, walked quite a bit, went to the motel for a nap and then

went bowling. Jaye said she had more fun last Saturday then she can

remember ever having. This weekend we went to KC for the appt and so had to go

up ahead of time and spent time shopping. We walked the mall for four or five

hours and out to eat before going back to the motel. She never complained at

all. NONE!!!! Now this was her birthday shopping excursion so she was trying on

clothes and shoes so that is exciting for her, but also that is exhausting for

anyone. WE LOVE ENBREL!!!! The rheumy said we are going to leave her meds where

they are at this point but will begin to wein her off of something eventually. I

am happy to stay the course we are on now. I was actually hoping that he would

not try to wein yet because I do not want to rock the boat. Jaye has been

on Enbrel now for 8 weeks and we are EXCITED. She has a bit of pain in one wrist

but no swelling and that was the only joint she had any pain in at all today.

That is amazing. I do not think we have ever gone into the appointment with just

a little pain in only one joint. I just had to share our excitement.

Veri & Jaye 17 poly

[Guest guest]

Wonderful, wonderful news! We're so happy for you!

Abbie (mom to nie, 7, psoriatic)

From: veristroud@... <veristroud@...>

Subject: Jaye Update

Date: Monday, February 7, 2011, 6:58 PM

 

Hello all,

Just thought I would let you all know that things are going well. We saw the

rheumy today and we all are pleased to announce that things are going very well.

He was pleased to find only minor swelling in one of Jaye's knees. We are

so thrilled with the Enbrel and how it is helping so much. Two weekends in a

row, we have spent a full day on our feet and Jaye has kept up. Last

weekend we had gone to Joplin to spend some time with one of my brothers. He is

stationed in Japan but was baack in the states for schooling. We went to the

mall, played putt putt, walked quite a bit, went to the motel for a nap and then

went bowling. Jaye said she had more fun last Saturday then she can

remember ever having. This weekend we went to KC for the appt and so had to go

up ahead of time and spent time shopping. We walked the mall for four or five

hours and out to eat before going back to the motel. She never complained at

all. NONE!!!! Now this

was her birthday shopping excursion so she was trying on clothes and shoes so

that is exciting for her, but also that is exhausting for anyone. WE LOVE

ENBREL!!!! The rheumy said we are going to leave her meds where they are at this

point but will begin to wein her off of something eventually. I am happy to

stay the course we are on now. I was actually hoping that he would not try to

wein yet because I do not want to rock the boat. Jaye has been on Enbrel

now for 8 weeks and we are EXCITED. She has a bit of pain in one wrist but no

swelling and that was the only joint she had any pain in at all today. That is

amazing. I do not think we have ever gone into the appointment with just a

little pain in only one joint. I just had to share our excitement.

Veri & Jaye 17 poly

[Guest guest]

Hooray!! That is so awesome! I'm so glad for you both and I hope she continues

to get better each day.

From: veristroud@...

Date: Mon, 7 Feb 2011 20:58:06 -0500

Subject: Jaye Update

Hello all,

Just thought I would let you all know that things are going well. We saw the

rheumy today and we all are pleased to announce that things are going very well.

He was pleased to find only minor swelling in one of Jaye's knees. We are

so thrilled with the Enbrel and how it is helping so much. Two weekends in a

row, we have spent a full day on our feet and Jaye has kept up. Last

weekend we had gone to Joplin to spend some time with one of my brothers. He is

stationed in Japan but was baack in the states for schooling. We went to the

mall, played putt putt, walked quite a bit, went to the motel for a nap and then

went bowling. Jaye said she had more fun last Saturday then she can

remember ever having. This weekend we went to KC for the appt and so had to go

up ahead of time and spent time shopping. We walked the mall for four or five

hours and out to eat before going back to the motel. She never complained at

all. NONE!!!! Now this was her birthday shopping excursion so she was trying on

clothes and shoes so that is exciting for her, but also that is exhausting for

anyone. WE LOVE ENBREL!!!! The rheumy said we are going to leave her meds where

they are at this point but will begin to wein her off of something eventually. I

am happy to stay the course we are on now. I was actually hoping that he would

not try to wein yet because I do not want to rock the boat. Jaye has been

on Enbrel now for 8 weeks and we are EXCITED. She has a bit of pain in one wrist

but no swelling and that was the only joint she had any pain in at all today.

That is amazing. I do not think we have ever gone into the appointment with just

a little pain in only one joint. I just had to share our excitement.

Veri & Jaye 17 poly

[Guest guest]

That is wonderful news!! So glad the Enbrel is doing the trick. Keeping up the

prayers and positive thoughts, Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

veristroud@...

Sent: Monday, February 07, 2011 7:58 PM

Subject: Jaye Update

Hello all,

Just thought I would let you all know that things are going well. We saw the

rheumy today and we all are pleased to announce that things are going very well.

He was pleased to find only minor swelling in one of Jaye's knees. We are

so thrilled with the Enbrel and how it is helping so much. Two weekends in a

row, we have spent a full day on our feet and Jaye has kept up. Last

weekend we had gone to Joplin to spend some time with one of my brothers. He is

stationed in Japan but was baack in the states for schooling. We went to the

mall, played putt putt, walked quite a bit, went to the motel for a nap and then

went bowling. Jaye said she had more fun last Saturday then she can

remember ever having. This weekend we went to KC for the appt and so had to go

up ahead of time and spent time shopping. We walked the mall for four or five

hours and out to eat before going back to the motel. She never complained at

all. NONE!!!! Now this was her birthday shopping excursion so she was trying on

clothes and shoes so that is exciting for her, but also that is exhausting for

anyone. WE LOVE ENBREL!!!! The rheumy said we are going to leave her meds where

they are at this point but will begin to wein her off of something eventually. I

am happy to stay the course we are on now. I was actually hoping that he would

not try to wein yet because I do not want to rock the boat. Jaye has been

on Enbrel now for 8 weeks and we are EXCITED. She has a bit of pain in one wrist

but no swelling and that was the only joint she had any pain in at all today.

That is amazing. I do not think we have ever gone into the appointment with just

a little pain in only one joint. I just had to share our excitement.

Veri & Jaye 17 poly

[Guest guest]

Veri - only 8 weeks on Enbrel with these results? Yeah, totally happy dance - I

agree!! So glad she is doing well! Thanks for sharing. I love to hear these

good stories. Happy Birthday to Jaye.

nn (, 9, systemic)

>

>

> Hello all,

>

> Just thought I would let you all know that things are going well. We saw the

rheumy today and we all are pleased to announce that things are going very well.

He was pleased to find only minor swelling in one of Jaye's knees. We are

so thrilled with the Enbrel and how it is helping so much. Two weekends in a

row, we have spent a full day on our feet and Jaye has kept up. Last

weekend we had gone to Joplin to spend some time with one of my brothers. He is

stationed in Japan but was baack in the states for schooling. We went to the

mall, played putt putt, walked quite a bit, went to the motel for a nap and then

went bowling. Jaye said she had more fun last Saturday then she can

remember ever having. This weekend we went to KC for the appt and so had to go

up ahead of time and spent time shopping. We walked the mall for four or five

hours and out to eat before going back to the motel. She never complained at

all. NONE!!!! Now this was her birthday shopping excursion so she was trying on

clothes and shoes so that is exciting for her, but also that is exhausting for

anyone. WE LOVE ENBREL!!!! The rheumy said we are going to leave her meds where

they are at this point but will begin to wein her off of something eventually.

I am happy to stay the course we are on now. I was actually hoping that he

would not try to wein yet because I do not want to rock the boat. Jaye

has been on Enbrel now for 8 weeks and we are EXCITED. She has a bit of pain in

one wrist but no swelling and that was the only joint she had any pain in at all

today. That is amazing. I do not think we have ever gone into the appointment

with just a little pain in only one joint. I just had to share our excitement.

>

> Veri & Jaye 17 poly

>

>

>

>

>

>

[Guest guest]

I am thrilled for you all! It is amazing how well it works.

Audra

14 poly 07

Peyton 13 poly 08

>

>

> Hello all,

>

> Just thought I would let you all know that things are going well.