update

[Guest guest]

,

You and your mom and your whole family are in my prayers.

Summer

Gabi 8 poly

Salvucci <lisa_salvucci@...> wrote:

I had an appointment with my rheumy today and it went pretty well. My xrays

look good and so does my blood work so my doctor wants to wait on starting me on

Humira and for now I'm just on Arava.. I'm definitely ok with that. I had nerve

testing done to check why my feet and legs are always numb and tingly and

nothing showed up so now I am being sent to a neurologist.. just what I needed

another specialist.. Other then that I am doing ok.

I know asked about my mom, she is doing ok. About two weeks ago my

mother was admitted into the hospital because she was having trouble breathing

and was really disoriented, we found out that the radiation did not work and her

tumors have not shrank at all, the didn't grow but they didn't shrink either,

they put her back on decadron (steriod) and it helped her breathing but now she

has oxygen here at home and they said since she didnt respond to radiation she

probably wont respond to chemo and even with the chemo its only being used to

give her more time.. The dont really expect for her to make it through the

summer.. Its been devestating to say the least, but we are trying to enjoy every

day as it comes. She had a port inplanted last friday and will start

chemotherapy tomorrow.. hopefully everything goes well and she is given a

miracle..

That's basically all though thats been going on.. I've been really stressed

out with school and work and dealing with my mom.. ill be overjoyed when this

semester is over.

Lots of Love

(JAS, 21)

[Guest guest]

-,

I am so sorry your mom is struggling so much. I will pray for her

peace and a miracle. The power of prayer is an amazing thing.

hugs Helen and (8,systemic)

-- In , ajaoky@... wrote:

>

> , as I so often say and sign, Hang tight and hang tough. I

know you are

> doing just that!

> It seems that despite all your enduring right now you are doing

the best

> with the situation given you and your family. I cant even imagine

and I admire

> your strength. I will continue to pray for you and your family and

if there is

> anything I can do please let me know....hugs!

> Donna

>

>

>

[Guest guest]

Sharon, sometimes you have to "let go" and not feel guilty. There's no sense in having two people in pain. The therapist knows what is best for your Mum and the staff can monitor her progress and relieve you of the initial responsibility.

I hope things get better quickly.

Aussie

Just got home from the hospital. Mom had RTKR on Tuesday. They are going to transfer her to extended care skilled nursing tomorrow. She has been so sick from the meds the last two days that she really hasn't gotten in much PT or OT. She isn't putting much weight on the knee and the therapist feels that she needs more help before coming home or to my house. I'm kind of glad that they made that decision

yet I feel like a bad daughter because I really feel like I couldn't take care of her this way. I have a bad back and with her being so unstable I worry about us both.

Hopefully tomorrow will be a better day.

Sharon

New Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

Sharon don't feel bad because you are concerned how you would cope.

That is often a issue with carers.

Do you have a carers group of some sort in the area you live?

A few years ago I worked for http://www.carersqld.asn.au/. Maybe you could

start there for some information.

A dream I had while I was employed by them was to have a carers support

group online 24 hours a day. I figured if all english speaking carers

groups worked together you could have it manned with a trained counsellor 24

hours a day with each timezone only having to do an hour. This could be

done inside work hours and for minimal cost. EG a worker could sit at their

desk doing their paperwork with the chat room open on the computer. If no

one came in the worker continued doing the paperwork, but the worker was

there if someone needed support. 10 years ago no one would listen - maybe I

should go back and try to start that fire all over again.

Carers - don't forget to care for the carer.

Aussie Margaret

RTHR 1990 revised 2004

Update

| Just got home from the hospital. Mom had RTKR on Tuesday. They are

going to transfer her to extended care skilled nursing tomorrow. She has

been so sick from the meds the last two days that she really hasn't gotten

in much PT or OT. She isn't putting much weight on the knee and the

therapist feels that she needs more help before coming home or to my house.

I'm kind of glad that they made that decision

| yet I feel like a bad daughter because I really feel like I couldn't take

care of her this way. I have a bad back and with her being so unstable I

worry about us both.

|

| Hopefully tomorrow will be a better day.

|

| Sharon

|

Send instant messages to your online friends http://au.messenger.

[Guest guest]

that is actually a very good idea. I am a breast cancer survivor (will be 11 years in July) and I don't know what I would have done without the online support group I found after about 2 years. At that time the internet was so much different but we all had ICQ so it seemed like you could always find someone on line when you needed it. Margaret <zztinau@...> wrote: Sharon don't feel bad because you are concerned how you would cope.That is often a issue with carers.Do you have a carers group of some sort in the area you live?A few years ago I worked for http://www.carersqld.asn.au/. Maybe you could start there for some information.A dream I had while I was employed by them was to have a carers support group online 24 hours a day. I figured if

all english speaking carers groups worked together you could have it manned with a trained counsellor 24 hours a day with each timezone only having to do an hour. This could be done inside work hours and for minimal cost. EG a worker could sit at their desk doing their paperwork with the chat room open on the computer. If no one came in the worker continued doing the paperwork, but the worker was there if someone needed support. 10 years ago no one would listen - maybe I should go back and try to start that fire all over again.Carers - don't forget to care for the carer.Aussie MargaretRTHR 1990 revised 2004 Update| Just got home from the hospital. Mom had RTKR on Tuesday. They are going to transfer her to

extended care skilled nursing tomorrow. She has been so sick from the meds the last two days that she really hasn't gotten in much PT or OT. She isn't putting much weight on the knee and the therapist feels that she needs more help before coming home or to my house. I'm kind of glad that they made that decision| yet I feel like a bad daughter because I really feel like I couldn't take care of her this way. I have a bad back and with her being so unstable I worry about us both.|| Hopefully tomorrow will be a better day.|| Sharon|Send instant messages to your online friends http://au.messenger.

[Guest guest]

Hi Sharon,

I'm glad your Mom's surgery went well. As far as going to the

extended care facility, most people do better there than before going

home. The PT folks can teach her how to get around better and make

her more comfortable before she does go home or to your place.

You can't feel like a " bad daughter " for not being able to take care

of her right now!! You aren't a professional PT. And with a bad

back yourself, you can't be expected to be as quick on your feet if

need be. As soon as she's a bit more confident in getting about

herself, you can pick it up from there. Don't worry...you'll be able

to help her MORE than enough when she gets home...LOL....

I hope she's feeling better soon, I know the meds can do a number on

you!!

Debi

>

> Just got home from the hospital. Mom had RTKR on Tuesday. They

are going to transfer her to extended care skilled nursing

tomorrow. She has been so sick from the meds the last two days that

she really hasn't gotten in much PT or OT. She isn't putting much

weight on the knee and the therapist feels that she needs more help

before coming home or to my house. I'm kind of glad that they made

that decision

> yet I feel like a bad daughter because I really feel like I

couldn't take care of her this way. I have a bad back and with her

being so unstable I worry about us both.

>

> Hopefully tomorrow will be a better day.

>

> Sharon

>

>

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

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

[Guest guest]

Margaret:

I think your idea has a lot of merit. I would strongly encourage you to follow

up on it. I

even think it could be a money maker. I would be interested in paying for

support like

that. I realize that was not your primary motivation but good ideas should be

rewarded.

Keep us posted if it does develop.

Internet companies like Google, and such are always looking for new ways

of

getting information to people. Google especially. I thing a video or voice

I.P. would be the

most interesting. But just typing in real time (chat room) would work as well.

Heck I am

getting exited just thinking about it!! Lets call it eCare or eComfort or . . .

Don

>

> Sharon don't feel bad because you are concerned how you would cope.

>

> That is often a issue with carers.

>

> Do you have a carers group of some sort in the area you live?

>

> A few years ago I worked for http://www.carersqld.asn.au/. Maybe you could

> start there for some information.

>

> A dream I had while I was employed by them was to have a carers support

> group online 24 hours a day. I figured if all english speaking carers

> groups worked together you could have it manned with a trained counsellor 24

> hours a day with each timezone only having to do an hour. This could be

> done inside work hours and for minimal cost. EG a worker could sit at their

> desk doing their paperwork with the chat room open on the computer. If no

> one came in the worker continued doing the paperwork, but the worker was

> there if someone needed support. 10 years ago no one would listen - maybe I

> should go back and try to start that fire all over again.

[Guest guest]

I think the reality is that professional people are still afraid of the

power of the internet.

My grandmother would not use a telephone. She had all sorts of reasons. I

guess in 50 years time we will laugh at the way people demonise the

internet.

Perhaps the difference is I am a community developer these days. I help

people help themselves. The internet is an awesome resource to help you

help yourself.

I will contact Care Queensland again soon and talk to them about who we can

set up a 24 hour support line online. I guess I should start contacting

carers organisations in other countries and see if I can light their fire.

Aussie Margaret

RTHR 1990 revised 2004

Re: Update

| that is actually a very good idea. I am a breast cancer survivor (will

be 11 years in July) and I don't know what I would have done without the

online support group I found after about 2 years. At that time the

internet was so much different but we all had ICQ so it seemed like you

could always find someone on line when you needed it.

|

| Margaret <zztinau@...> wrote:

|

| A dream I had while I was employed by them was to have a carers support

| group online 24 hours a day. I figured if all english speaking carers

| groups worked together you could have it manned with a trained counsellor

24

| hours a day with each timezone only having to do an hour. This could be

| done inside work hours and for minimal cost. EG a worker could sit at

their

| desk doing their paperwork with the chat room open on the computer. If no

| one came in the worker continued doing the paperwork, but the worker was

| there if someone needed support. 10 years ago no one would listen - maybe

I

| should go back and try to start that fire all over again.

|

| Aussie Margaret

| RTHR 1990 revised 2004

Send instant messages to your online friends http://au.messenger.

[Guest guest]

eCare I think. It is about carers and caring for them

We have a phone support service available 9-5 here. The advantage of what

I am talking about is that it is text based because often the person being

cared for is in the room, or the room next door. This is to be support for

the frustrated or stressed carer.

What I was thinking of was a 24 hour service. Often people caring for

those with dementia will have increasing issues during the twilight time -

after 5pm. And you know yourself that when the kids were sick at night it

was the worst time - you felt SO alone.

It does need resources. You would have to have places all over the world

where you could refer people to. Maybe a secure website with a database.

Gathering that information is a huge job.

I've just agreed to do 20 websites for the healthy ageing programs that do

not have websites in Queensland, Australia. I know that they really don't

realise what work is involved in that. Luckily I am having people come to

me and ask if they can help.

Don, where are you from? What we need to do is get people from a lot of

different countries interested. People on the ground can do it better -

other wise I will need a travelling fund. I have a sign on my desk -

" Volunteers make things happen " .

I'm really good at dreaming up these ideas. I throw them out there and see

if other people think them worth running with. I do believe this idea is a

good one and glad it excites you. Might run another one past you sometime

too.

Aussie Margaret (maybe I should say the " Quite Mad " Aussie Margaret)

RTHR 1990 revised 2004

Re: Update

| Margaret:

|

| I think your idea has a lot of merit. I would strongly encourage you to

follow up on it. I

| even think it could be a money maker. I would be interested in paying for

support like

| that. I realize that was not your primary motivation but good ideas

should be rewarded.

| Keep us posted if it does develop.

|

| Internet companies like Google, and such are always looking for new

ways of

| getting information to people. Google especially. I thing a video or

voice I.P. would be the

| most interesting. But just typing in real time (chat room) would work as

well. Heck I am

| getting exited just thinking about it!! Lets call it eCare or eComfort or

.. . .

|

| Don

|

| >

| > Sharon don't feel bad because you are concerned how you would cope.

| >

| > That is often a issue with carers.

| >

| > Do you have a carers group of some sort in the area you live?

| >

| > A few years ago I worked for http://www.carersqld.asn.au/. Maybe you

could

| > start there for some information.

| >

| > A dream I had while I was employed by them was to have a carers support

| > group online 24 hours a day. I figured if all english speaking carers

| > groups worked together you could have it manned with a trained

counsellor 24

| > hours a day with each timezone only having to do an hour. This could be

| > done inside work hours and for minimal cost. EG a worker could sit at

their

| > desk doing their paperwork with the chat room open on the computer. If

no

| > one came in the worker continued doing the paperwork, but the worker was

| > there if someone needed support. 10 years ago no one would listen -

maybe I

| > should go back and try to start that fire all over again.

|

|

|

|

|

|

|

[Guest guest]

Margaret:

I live in the San Francisco Bay Area. A little town called

Pleasanton in the east bay area. Get Google Earth running and you

will see were I live.

If you could write a short one page summary of your idea. Cover what

would be needed (people, things, expertise etc). How that might be

obtained (funding, volunteer, steal etc). You get what I mean. I am

asking this so I could approach someone at Google to see what they

think of it. That is what I meant earlier about getting excited.

We all lead busy lives. I would be willing to work in this idea

because like I said it has merit. So you got your first volunteer to

make things happon.

Don

>

> eCare I think. It is about carers and caring for them

>

>

> Don, where are you from? What we need to do is get people from a

lot of

> different countries interested. People on the ground can do it

better -

> other wise I will need a travelling fund. I have a sign on my

desk -

> " Volunteers make things happen " .

[Guest guest]

Hi Don

May daughter got married in Dublin on Saturday.........the rehersal dinner Friday night was on Main St. in Pleasanton. Small world!

Sally

[Guest guest]

,

This is exciting news and I hope that everything will go wonderful

for !

Blessings,

(Aundrea 10 systemic) and my own age 14! :-)

>

> Well, we went to the rheumy and he decided to go ahead and take

> off of the mtx since he's getting around so well and has no

swelling.

> I told him about the increased complaints when we dropped to 1

tablet

> a week but he wasn't worried about it. He said that fleeting aches

and

> pains may be a fact of life for . Of course if it gets worse

we'll

> let him know. We go back in six months if stays well.

>

> Blessings,

>

> & (11-poly)

> (8), Caity (4)

> 's JRA Page: http://www.caringbridge.org/mn/palexander/

> JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

>

> I GoodSearch for The Arthritis Foundation North/Central Chapter!

>

> Raise money for your favorite charity or school just by searching

the

> Internet with GoodSearch - www.goodsearch.com - powered by

>

[Guest guest]

Chapman <ltcol@...> wrote: Sharon, sometimes you have to "let go" and not feel guilty. There's no sense in having two people in pain. The therapist knows what is best for your Mum and the staff can monitor her progress and relieve you of the initial responsibility. I hope things get better quickly. Aussie Just got home from the hospital. Mom had RTKR on Tuesday. They are going to transfer her to extended care skilled nursing tomorrow. She has been so sick from the meds the last two days that

she really hasn't gotten in much PT or OT. She isn't putting much weight on the knee and the therapist feels that she needs more help before coming home or to my house. I'm kind of glad that they made that decision yet I feel like a bad daughter because I really feel like I couldn't take care of her this way. I have a bad back and with her being so unstable I worry about us both. Hopefully tomorrow will be a better day. Sharon New Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

Diane - Dr. Vogler is a very good doctor. He is quite in nature but very

through when it come to his exams. It is almost like the moment he comes into

the room he is studying Hunter. He watches how she moves and walks but does

it in a very suttle way. He talks with Hunter and listens to her stories,

which puts her to ease. When I have called him at night or on the weekends

when Hunter was sick (especially in the beginning) he was kind and listened to

my worries. He has a wonderful assistant, Kennedy, who is just as

wonderful as he is. Sandi Ken Hunter (7 Systemic)

[Guest guest]

Diane,

has never had the injection yet. I was told she needed it but I

also made the choice to wait and see and if got worse then we would

have to go with it. Several on the list have experienced the injection and yes

the child will be asleep.

Dr. Vogler is a Cool Dr. His Staff is Good. Several of the Parent's here

do go and see Vogler. Hope to see you at the Conference.

Robbin

[Guest guest]

Sandi,

You are so right. If I don't see with Vogler I ask where she

is. They are a pair.

Next time you hear from them tell them and I said Hi.

Robbin

[Guest guest]

Sherry, this is all Excellent! Thanks for llettinng us know how it

went - we all learn from posts like yours.

This is a great example of why regular fluoros are so important! If

you had simply gotten more fill froom a less experienced or less

knowledgable doc, the dilation would have continued to enlarge, and

likely would have become a full slip or worse. Many US docs rarely

use a fluoro until there are symptoms of problems, and by then big

fixes often requiring mor surgery are needed.

With less pressure from fills, almost all dilations heal completely,

then you can safely get more fill later, cautiously, if you need it.

Any enlargement of the esophagus or pouch can push the band out of

good position on the stomach. An enlarged esophagus also allows the

esoph. to act as a second pouch to store food, so you will eat way

too much and negate weight loss. The enlargement also adversely

affects the role of the esoph - which is a muscle meant to move the

food from the mouth to the stomach. Any backup can damage the esoph.

so it does not move food through well - it just sits there.

Thanks for playing courier! :-) (I had asked Sheery to print

something out for me and deliver it to Dr. Curry). Much quicker and

mor personal than mail.

Sounds like you got very excellent care and will soon be back on

track!

Sandy R

>

> First of all, thank you Phyllis and Sandy for referring me to Dr.

> Curry. I am very impressed. He called me back personally, less

than

> 30 minutes after I had called his office. That was Wednesday.

Today,

> Friday, I went for an EDG which was quick and easy.

>

> You may remember that I wanted a second opinion as I was worried

about

> esophageal dilation and band placement. I had been having some

reflux

> and the band had mysteriously tightened after several weeks of a

good

> fill.

>

> The good news is that my band remains in a good position. However,

my

> esophagus is " mildly " dilated, more than Dr. Curry would prefer. He

> gave me a .1 unfill. I'm very pleased he did not think a complete

> unfill was necessary. I'm hoping this is not too much of an

> unfill--I've been enjoying the " sweet spot " --yet enough to prevent

> (maybe reverse?) further enlargement of the esophagus. I certainly

> don't want to risk losing my band and was becoming paranoid.

>

> I was drowsey after the procedure and didn't ask many questions. I

> can understand that an enlarged esophagus is undesirable but how

does

> that cause you to lose the band?

>

> Sandy, I enjoyed reading your lap band basics. Dr Curry remembers

you

> well and has your email and lap band list. You provide an invaluable

> service.

>

> Sherry

> 5/24/05

> 236/226/157/143

>

[Guest guest]

If given the chance to heal, does the esoph. resume moving food through to the

stomach? Ruth

[Guest guest]

Yes, unless the dilation is huge and has been going on for years. The

peron is unfilled, given meds to help heal, and with the lack of excess

pressure backing the food up into the espphagus, the esophagus relaxes

and heals and goes back to it's small-diameter. I had this aboit a tear

put, and it took

3 months to heal, but it's fine now, (3.5 yrs out) with a reasonable

fill. Sandy

>

> If given the chance to heal, does the esoph. resume moving food

through to the stomach? Ruth

>

>

[Guest guest]

Helen, please give Nick a gentle hug and let him know he is in my thoughts

and prayers. So many speak of the post conference flare and I hate to hear he

is suffering.

Hang tight and hang tough, mom!

Hugs & Smiles !!!!!

Donna

[Guest guest]

-Thanks Becki,

But Nick is no better and in fact is complaining that his heart is

racing now so we have an appt this morning with his ped. Hes been

throwing up for 5 days now, has headaches, low grade fever, his joints

hurt, very fatigued, just not right...time to get it checked.

Hugs Helen and (8,systemic)

, hi is-- In , Arthurnator@... wrote:

>

> Helen,

> I am so sorry to hear that Nick is having a rough time.Like you

said,

> hopefuly it's just a bug and he will get over it soon.

> Give him a hug from me.

> Love and hugs

> Becki and 8 systemic

>

>

>

[Guest guest]

Hi Helen,

I was so saddened to hear that little Nick isn't feeling well. The way you

described things, it sounds like a classic systemic flare. That's how it is for

Josh at least, except that he doesn't ever vomit and his white cell count is

always too high when he's flaring - even though he takes MTX. They can get so

skinny when they're sick, that it's almost scary. There have been times when

I've actually looked forward to increasing the Prednisone dose, knowing how

quickly it has Josh feeling better and so his appetite would improve so he could

quickly regain the weight he'd lost.

I remember that pale and listless look so well. When he was younger, Josh spent

so many hours lying about during flares, with no energy whatsoever, that I

sometimes feared that his childhood memories would be sad ones - that he'd miss

out on too many activities. Sometimes I think I pushed too hard to make sure he

wouldn't miss certain events, even though - in hindsight- he probably would have

been better off being at home and resting some more. The thing is, despite all

of what Josh has gone through in the 11 years since being diagnosed, he doesn't

focus on the bad times. He still mostly remembers the good times and fun. Sort

of like how we don't remember so vividly the pain associated with childbirth.

Our focus is on the new baby and years later we're more likely to recall the

positive aspects of the experience.

I wish Nick (and the other children affected, too) didn't have to be going

through this. I had so hoped that with the better understanding and newer meds

it would have by now put an end to this kind of suffering for kids with

arthritis. I still hope that happens soon.

Helen, today is my birthday. The big 42! When Kayla finishes cheer practice

we'll be going out for dinner and then we'll be leaving for a day or two. You

guys will be in my thoughts and as soon as we're back I'll be checking in here

to see how those blood test results looked ... and to find out how Nick is

doing. I hope there will be some improvement.

Aloha,

Georgina

update

Nick is struggling, hes not been the same since we returned from

Atlanta.

He has had increased joint pain and stiffness on waking up, mainly in

his knees and fingers. His voice is not right, but he does not

complain of throat pain. He has thrown up the last 2 mornings and lost

all the weight be gained in Atlanta and then some, a low grade fever

and headaches.

He is very tired and just lays around all day. He missed summer school

today.

Hopefully this is just a speed bump, a bug, and he will snap out of it

soon. The trip to Atlanta took a lot out of him, just as the trip to

Rhode Island did last year. It's so frustating.

hugs Helen and (8,systemic)

[Guest guest]

- I am so glad to hear about your mom. Tell her to keep fighting and

beating the

odds! That is awesome... Sorry to hear you are flaring. I hope that you can get

on some

meds soon!

Lots of love -

Alia and Caroline, age 4, poly and uveitis

Evan Guy, 13 months, " I do all my own stunts "

>

> Sorry to keep you all wondering where I was.. Everything is actually going

pretty good

my mom is doing well on treatment so well that they even say she has more time

then they

ever originally thought.. definitely more then a year. I did two weeks at Camp

Okizu and

had an amazing time, I'm definitely missing it. And sadly after four months of

no meds I

have flared again.. oh well.. I have to set up an appointment with the rheumi so

I can get

back on meds..So basically everything is going ok. I did my orientation on the

26th of July

for San Francisco State and I start school August 28th..Kind of nervous and kind

of

excited.. So yep basically that is what is going on with me... No worries I'm

still here

>

> Lots of Love

> (JAS, 21)

>

>

>

[Guest guest]

Helen,

Tell Nick there's going to be a Cure one day so no more kid's have to

tolerate Pain. It is in the working as we speak but when we do not know. I know

each one of us have to have a moment's alone but you never have to have a

moment alone with this group sweetie. As we all do it. We let off our emotions

and feel better after. I am glad to see Nick is still pushing his self though as

this is a True Trooper. Nick the TROOPER. Wouldn't that be cool. We drive

through your town years from now and he stops us with his siren and

says......Ma'am your driving to slow What seems to be your problem? ....lolol.

Well Mr

Nick the Trooper I am Lost and where I come from I drive slow. lololol. Well

he asks where are you trying to go? I say well I am heading to see Helen. He

would say well my Mom's name is Helen. lolol Well Trooper Nick would you

tell me if you had JRA? He would say yes I did. I would say Ok point me in the

Direction of your Mom. lololol. We arrive with Sirens going lolol. Trooper

Nick says well Ma'am I know your one of Mom's friend but I still have to write

you up for going to slow. lolololol. I would say ok fine. But next time I will

fly by you and you should let me go on back South lolol.

Robbin

[Guest guest]

Helen,

I do not even know you guys but my heart swells with pride when you tell us

about Nick and how he is being so strong. He is just an amazing kid. There

are many of our kids that are strong with this, and stubborn. They are going to

be kids that make a difference in the life of others. They are the ones that

will grow up to be looked up to by the other kids. Unfortunatly it may be a

long road but they will get there. And as adults they will be all the

stronger and ready to help make a difference in all our world.

Veri