Thankyou

[Guest guest]

Hi D'Lynn,

First off, that's a very beautiful name Secondly, I'm really glad you

found our email group. You were right. This address goes straight into

my personal email box. I see that you've also made a post to the group,

though ... so I'll respond there. That way, the posts will go out to all

the people in the group, and those who have advice or suggestions about

the issues you raise will be able to respond back. It's pretty cool,

because we can all connect pretty easily and sometimes learn from each

other's experiences.

If you notice, at the bottom of emails there's a link to the

page on my site with arthritis links. If you ever feel like really

exploring the subject, that's a great starting point. Many of the

websites listed provide excellent information on JRA. Also, our list has

an available archives of past messages with a search feature. So, if

there's a particular subject you're interested in you can visit the main

egroups site, get to our list area, and type in a subject to find past

messages about it that were sent through the group. Of course, you can

always feel free to just ask here as well but sometimes there's days

when there's not too much mail and if no-one seems to be responding

quickly enough, it's another good source of info.

Well, right now my little baby birds are crying to be fed. So .... I'll

make this short. Again, it's nice to 'meet' you. And I hope you're able

to have some of your questions answered, maybe get some helpful tips

from others to make it a bit easier to cope with your daughter's JRA.

Ask away. And never worry that your message may be too long. I don't

think anybody has ever beaten my record! ... What most can adequately

describe in one sentence often takes me a whole paragraph!

Much Aloha,

Georgina

FairRDMD@... wrote:

>

> Hi My name is D'Lynn. Im new to the computer, but what a wonder it has been

> since my little girl Devyn 21months has been diagnosed with pavci articular

> JRA. This sight is wonderful. I cant wait to figure it out a little more I

> have so many questions. The Dr's haven't been very helpful, They seem a

> little annoyed that I have been trying to research things. Im guessing its

> because the one we have isn't very informed on the subject. We finally got to

> go to Seattle children's hospital. They were Great!! It was nice to finally

> find out what was wrong. The hard thing was being in shock & not knowing what

> to ask. She is on 400 mg ibuprofen. Then we went to an eye Dr he said she was

> fine but fits the bill for loosing her sight, but again couldn't give any

> more information. Sorry if this seems to be to much or to long I have so much

> to ask. I have a felling this is not the spot were you reach everyone. Again

> what a wonderful thing you have done this sight is such a blessing Thankyou.

> D'Lynn

[Guest guest]

Sheila,

Thankyou, It came from the heart!!

Take Care

de Poortere

Mom to 5 and Bobby 3

Bernardsville NJ

Director of Fundraising

CHERAB Foundation

[Guest guest]

Jeanette,

Glad to hear things are going better for you. Hang in there. My dad had

lung cancer and then later they found metastatic brain cancer. He had

surgery and is left with no use of his left arm. He has balance problems and

needs help walking. Walks with a cane when he does walk which is very

little. He is in physical therapy after a fall and has done very well. So I

know what you are going through. His brain surgery was 3 years ago and so

far he has been disease free. He too gets very frustrated at time having

been a very active person. Stay with the therapy. Hang in there. It does

get better.

[Guest guest]

>

> Dear All This is just to say a big thankyou for all the support and

help that i have had since my stroke, i could not have got this far

without you.

Jeannette,

It is so good to hear from you. I have been thinking of you

constantly. You know what, you type better with one hand than I do

with two. I am so glad that you are improving so nicely. Keep up

the fight girl.

Not sure about the pneumonia question, but maybe when you had the

stroke you ingested something into your lungs. I know that can cause

pneumonia as it happened to my dad when he had his first stroke.

Hoping you have a great Christmas,

Joanna in WA state

[Guest guest]

>but between playgroups, MOPS, and the 3 little ones, I

> have not had much time to sit down and type. It definately has been

a

> busy week

I know what you mean with 3 little ones! My 3 keep me busy and

always running around! I don't know what I would do if I had to work

on top of it!

here with my oldest going back to school. It is hard to get

> back to getting up at 6am..ick. LOL I am not an early morning

person.

You and me both! Miranda has to be ready for the bus at 6:45am so

the alarm goes off at 6, not that I don't hit the snooze at least

once, but I just *hate* getting up before the sun!

> Anyway, so far soo good. At my highest I was 263, I am down to 258.

Congrats on the 5lb loss! You are doing great!

> Anyway, I am happy with the 5 pound loss and my goal is now to start

> exercizing. I have been putting that off due to bad migranes, but I

> know once I get started I will feel much better.

>

Start off slow and take it easy! I know what you mean about the

migranes, they run in my family, I have been pretty lucky in that

department. I didn't start having them until I was older (21) and

then I began getting sevreal of them and they just kept getting

worse. The started slowing down and getting a bit lighter and it has

been a long while since I've had one (knocking on wood!) and

hopefully they will just stay away!

a

[Guest guest]

In a message dated 4/9/2004 10:57:25 AM Pacific Standard Time,

sanro814@... writes:

A special thanks to FirstWifeK. What a

special lady. Thank you K.

Oh my, you are very welcome! I am blushing. You are very welcome and I am

glad I could encourage you.

I am glad you wrote in. Do share how you are doing from time to time.

We like to keep up on how folks are.

K

[Guest guest]

i think 2 miles is good really. i do all sorts of kickboxing and step but i can only speed walk for about 2 miles so its hard. especially depending on the terrain. our country roads have nice hills not to big but not to small so you can feel it. the firm is another i havent really tried but i here are great workouts. i have one karen voight step (ultimate circuit challenge) that combines several premixes and include the use of a ball and weights. most any kickboxing is great especially for abs and buns b/c you use these muscles to balance and kick. tae-bo videos are good for this b/c the advanced ones i have does a section for abs and buns toners along with the cardio and i always feeled toned and strong after a workout. alternating this with some walking and step should help with your cardio. i think you have a good routine to hit your trouble spots and you can always work up intensity by adding dumbells(or any weights you can use safely) to your squats and lunges. the best of the best exercises for legs. i am sure you will love this group. its been helpful with workout ideas and video suggestions

kassia

[Guest guest]

karen i would say is intermediate although you can modfiy some of the moves to suit your ability. and i meant the 60cm stability ball. most of my ab and bun videos are denise austin's and whatever is part of the other routines i have like cathe,tae-bo, and karen voight. cathe is hard and uses a lot of heavy weights. karen's videos i think only do 10 mins. max for leg work. i have get fit fast denise austin abs and thighs which are really good b/c if you can do more you can move onto the next segment. the same with hit the spots thighs and hit the spot abs. hit the spot is 3 ten minute segments while get fit fast has 2 ten minutes segments and 1 fifteen minute segment. also there is a video collection called fitness heavens ten best workouts. you can find them pretty cheap on ebay. its all these great workouts for beginner/intermediates and it has cardio/step/kickboxing/legs and ab works and little weights too. that is best i can give you from my collection of goodies. i hope this will help you.

kassia

[Guest guest]

Thankyou Kassia,

So then I guess I better get some light weights for the squats

and lunges I'll be adding. As for Voight, I'll have to

look her up, maybe I'll get The Ultimate Circuit challenge ,( down

the road of course.) When you mentioned Ball, do you mean one of

those 60cm Balls you can get at Academy? Or do you mean a Medicine

Ball?

Plus, do you have any other suggestions DVD'wise for someone

intending to tone their Abs, Thighs, & Buns? Specifically novice

through intermediate, unless there is one DVD that covers all

difficulty levels.

Thanks again & your right I already like this group

> i think 2 miles is good really. i do all sorts of kickboxing and

step but i

> can only speed walk for about 2 miles so its hard. especially

depending on

> the terrain. our country roads have nice hills not to big but not

to small so

> you can feel it. the firm is another i havent really tried but i

here are

> great workouts. i have one karen voight step (ultimate circuit

challenge) that

> combines several premixes and include the use of a ball and

weights. most any

> kickboxing is great especially for abs and buns b/c you use these

muscles to

> balance and kick. tae-bo videos are good for this b/c the

advanced ones i have

> does a section for abs and buns toners along with the cardio and

i always

> feeled toned and strong after a workout. alternating this with

some walking and

> step should help with your cardio. i think you have a good

routine to hit

> your trouble spots and you can always work up intensity by adding

dumbells(or

> any weights you can use safely) to your squats and lunges. the

best of the

> best exercises for legs. i am sure you will love this group. its

been helpful

> with workout ideas and video suggestions

> kassia

[Guest guest]

Dear

I just wanted to add my condolences to you and your family for your loss of your

precious daughter.

I am praying for you and your family. May God grant you comfort and peace

during this difficult time.

Sincerely,

Sparks, NV

Adlard <cadlard@...> wrote:

Dear group,

On behalf of Steve and myself, I want to say 'thankyou' to all of our

friends in this group who sent messages of condolence for our loss of

Janene. We are so very unhappy and lonely without her.

Some of you asked how you could help - there is one way - please keep

an eye on the group for a while for me and make sure all queries are

answered.

God bless all of you,

and Steve

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

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

I am so sorry to hear about your daughter Janene...I have been in the

hospital and wanted you to know how sorry I am and I know nothing can ease this

pain of a loss of a child.But please accept my sincere loving hope that you will

one day be able to deal with this pain...God bless you and your family during

this time I am so sorry...

lisa johnson <tulipkj@...> wrote: Dear

I just wanted to add my condolences to you and your family for your loss of your

precious daughter.

I am praying for you and your family. May God grant you comfort and peace during

this difficult time.

Sincerely,

Sparks, NV

Adlard <cadlard@...> wrote:

Dear group,

On behalf of Steve and myself, I want to say 'thankyou' to all of our

friends in this group who sent messages of condolence for our loss of

Janene. We are so very unhappy and lonely without her.

Some of you asked how you could help - there is one way - please keep

an eye on the group for a while for me and make sure all queries are

answered.

God bless all of you,

and Steve

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

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

>

> Hi Everyone,

> Thank you for helping my self esteem. I have sectional heterochromia,

> left eye blue, right blue with a bit of hazel in the centre making it

> look green. It first appeared when I was 3 years old.

> I am very self-concious about it having been taunted in my childhood

> years and re-enforced by the odd comment through life. I have always

> tried to avoid having it noticed, your honesty is helping me come to

> terms with it.

> I inherited it from my Father who has steel coloured eyes, so it is

> not noticeable. I only noticed it in him when I was 30.

>

> It's great to see the diversity of people with it, long may you run.

> I'll post a picture one day when I'm braver.

>

Hello there wendyharmer!!

I just joined onto this group last nite & got your post tonite in my

mailbox!!

I joined because of the news tidbit that I read about the Bosworth

girl in the news. Would you believe that I have the same color

sequence and in the exact same eyes as you do!!!!!!!! I am now 51

yrs. old and I don't recall how old I was when I first noticed them.

After thinkin real hard, I now recall somewhere under 10 yrs. old!

I have never (sociallly) been downgraded because of them as I always

have heard that people with different color eyes are more

intelligent!!!! I have heard this from more than a couple of people!!

I like to think of myself as more intelligent cause I know my IQ is

above average,lolol

I've never posted a pic before so I wouldn't wait for it too long,lolol

I also inherited my eyes I think from an uncle who I heard had odd

color eyes and had a degree of albinism in him, but I never met him

nor seen a pic of him.

talk to ya latr

[Guest guest]

I don't know if I speak for anyone else ~ especially those of us with

the young children who have heterochromia....but I'm concerned about

the talk of low self esteem & not being brave enough to post your photo

on this website in particular!! I think the different eye color is an

absolute beautiful thing!! God made you extra special as far as I'm

concerned....of course, kids will be kids....I was made fun of for my

last name growing up....it was " Kelley " ...Happy St 's Day, by

the way....but, come on....what could be " wrong " with that last name...

the answer is....ABSOLUTELY NOTHING!! But, the kids I went to school

with would say silly things like " smelly Kelley " ....just to tease ~ I

didn't smell (at least I don't think so, HAHA) BUT, kids are just that

way by nature & I intend to raise my BEAUTIFUL daughter to be PROUD,

PROUD, PROUD of the way God made her & to embrace her different colored

eyes! Please feel free to share your beauty with the world ~ be proud

of who you are....

Go Braugh ~ Happy St 's Day ~ Love, Kealy's mom

[Guest guest]

Man, heterochromia is the coolest thing. Sorry, but I think the way

the eyes are different is AWESOME. If I saw a girl with heterochromia

in the street I swear I'd fall in love instantly.

>

> Hi Everyone,

> Thank you for helping my self esteem. I have sectional heterochromia,

> left eye blue, right blue with a bit of hazel in the centre making it

> look green. It first appeared when I was 3 years old.

> I am very self-concious about it having been taunted in my childhood

> years and re-enforced by the odd comment through life. I have always

> tried to avoid having it noticed, your honesty is helping me come to

> terms with it.

> I inherited it from my Father who has steel coloured eyes, so it is

> not noticeable. I only noticed it in him when I was 30.

>

> It's great to see the diversity of people with it, long may you run.

> I'll post a picture one day when I'm braver.

>

[Guest guest]

I was made fun of as a kid. My name is Kelli, and I have two

different colored eyes...imagine the horror...lol. Anyway, I love my

eyes and wouldn't have them any other way.

>

> I don't know if I speak for anyone else ~ especially those of us

with

> the young children who have heterochromia....but I'm concerned

about

> the talk of low self esteem & not being brave enough to post your

photo

> on this website in particular!! I think the different eye color

is an

> absolute beautiful thing!! God made you extra special as far as

I'm

> concerned....of course, kids will be kids....I was made fun of for

my

> last name growing up....it was " Kelley " ...Happy St 's Day,

by

> the way....but, come on....what could be " wrong " with that last

name...

> the answer is....ABSOLUTELY NOTHING!! But, the kids I went to

school

> with would say silly things like " smelly Kelley " ....just to tease

~ I

> didn't smell (at least I don't think so, HAHA) BUT, kids are just

that

> way by nature & I intend to raise my BEAUTIFUL daughter to be

PROUD,

> PROUD, PROUD of the way God made her & to embrace her different

colored

> eyes! Please feel free to share your beauty with the world ~ be

proud

> of who you are....

>

> Go Braugh ~ Happy St 's Day ~ Love, Kealy's mom

>

[Guest guest]

I agree- I just had a baby and when I first saw that he had 2

different color eyes I couldn't believe it! I always thought that it

was totally cool to have eyes like that- what are the odds that my

li'l nugget would have them!? I've even had some bad dreams that I

looked in his eyes and they both turned brown- I would be so sad! I

just posted Li'l Leos pictures so have a look at my cute li'l nugget!

My mom is really woried that kids will make fun of him, but I think

that it all depends on how he carries himself- If he's confident I

don't think it will be a problem. And if he has a few akward teen

years where he is extra self concious, he can always get some colored

contacts to wear until he gets over it. I'm not really woried about

it.

> >

> > Hi Everyone,

> > Thank you for helping my self esteem. I have sectional

heterochromia,

> > left eye blue, right blue with a bit of hazel in the centre

making it

> > look green. It first appeared when I was 3 years old.

> > I am very self-concious about it having been taunted in my

childhood

> > years and re-enforced by the odd comment through life. I have

always

> > tried to avoid having it noticed, your honesty is helping me come

to

> > terms with it.

> > I inherited it from my Father who has steel coloured eyes, so it

is

> > not noticeable. I only noticed it in him when I was 30.

> >

> > It's great to see the diversity of people with it, long may you

run.

> > I'll post a picture one day when I'm braver.

> >

>

[Guest guest]

I agree- I plan to tell my son everyday how amazing his eyes are! I

know that there may be kids who will tease him, but even the most

normal kid will get teased for something. I know I got teased, and

there's nothing wrong with me.

[Guest guest]

Welcome Debbie! Glad you found us! This is a wonderful group, I am learning something helpful here all the time. I have 2 sons, a 13 year old with slight ADHD and a 10 year old with Aspergers.

Estevan, SK

Canada

-- Thankyou

Thankyou for allowing me to be apart of your group. To tell you a little about me... I live with my 6 year old grandson. He is high-functioning autistic and about the sweetest little guy I know. I hope i can be of support to all that need help and I will be grateful for any and all support as well. Thanks again. Debbie

[Guest guest]

Welcome Debbie! Glad you found us! This is a wonderful group, I am learning something helpful here all the time. I have 2 sons, a 13 year old with slight ADHD and a 10 year old with Aspergers.

Estevan, SK

Canada

-- Thankyou

Thankyou for allowing me to be apart of your group. To tell you a little about me... I live with my 6 year old grandson. He is high-functioning autistic and about the sweetest little guy I know. I hope i can be of support to all that need help and I will be grateful for any and all support as well. Thanks again. Debbie

[Guest guest]

Hi Nicola

If you fancy a couple of days away to see some lovely countryside, Dr Peatfield is doing a clinic at my cottage (betwen Skipton and Keighley) on 19th and 20th July. We have some very reasonable B & B in the village too, as many on this forum will tell you. However, if that is a step too far, have a look at his other clinics that may be more suitable on our website www.tpa-uk.org.uk

Sorry that you have such a fear of the dentist's chair, but if you have breathing problems, I can entirely understand how frightening this must be to you. Do you think it might help if you have a word with Becky. She is a member here and she runs the website http://www.mercurymadness.org/. I am sure she will be able to help you and give you more information regarding the connection between amalgam fillings and hypothyroidism.

Have you considered purchasing some high dose non-flushing Niacin (Bitamin B3) and high dose Co-Enzyme Q10 to help with your BP?

Luv - Sheila> > I do have amalgam fillings - but....... I have a great fear of > dentists which does not help and have not been for 3 years due to > this, it is since my breathing has got worse I am so scared just to > sit in the dentist chair, I really am a head case!!!> > I live in Leicester and was wondering if you could recommend anyone, > I am privately insured as well, or if Dr P is doing a clinic anywhere > in the area on his web site it does not seem to be.> > I am 3 lots of blood pressure medication and my blood pressure just > keeps increasing and my Endo just increased the dose again this week, > I am also on Cabergoline for very high Prolactin which is from the > pituitary.> > Thanks again for all your help> > Nicola>

[Guest guest]

Hi Nicola, I live very near to Leicester, took me half an hour to get

to Dr Peatfield's Castle Donington clinic, check website for dates,

probably two or three months away. Have you been diagnosed with

hypothyroidism? As you have problems with your pituitary gland, TSH

(thyroid stimulating hormone) may be affected? Look up secondary

hypothyroidism, Ruth.

>

> Thankyou Sheila for taking the time to reply, I have printed out

your

> email and will write down what I need to ask my GP if I can ever

get

> an appointment, it is pretty impossible and with my work schedule

> makes it worse, but will get there sometime.

>

> I do have amalgam fillings - but....... I have a great fear of

> dentists which does not help and have not been for 3 years due to

> this, it is since my breathing has got worse I am so scared just to

> sit in the dentist chair, I really am a head case!!!

>

> I live in Leicester and was wondering if you could recommend

anyone,

> I am privately insured as well, or if Dr P is doing a clinic

anywhere

> in the area on his web site it does not seem to be.

>

> I am 3 lots of blood pressure medication and my blood pressure just

> keeps increasing and my Endo just increased the dose again this

week,

> I am also on Cabergoline for very high Prolactin which is from the

> pituitary.

>

> Thanks again for all your help

>

> Nicola

>

[Guest guest]

I'd like to thank all of you for taking the time to give your point of view with

regards to my question. I must say that your answers echo exactly what I was

thinking. Dr N. is a good dr - there must be a good reason for him accepting to

do this trial.

Maybe they're worried about Glivec not giving really long lasting remissions,

maybe they think that Tasigna gives deeper remissions; having said that I'm

PCR-U most of the time.

He told me today that Tasignia is generally better tolerated by patients, but

I'm very sensitive to all drugs (look what happened with my Ara-C) & from what

i've heard about rashes & pancreatitis, low blood counts, I think I'd prefer to

stick with the devil I know.

I took a while to accept it - but I suppose it's better to be fat & healthy than

slim & sick.

I will ask Dr N. why he was so suggested this trial to me - it's not as if i

could do any better than PCR-U.

I will be seeing him in September, but will mail him before to ask him.

I feel kind of guilty having brought up this subject as i know that many

patients have no choice & don't get the results they were hoping for or get

really bad side effects with glivec or other drugs, but I can't help thinking

that in the months or years to come, more & more of us will find ourselves faced

with such choices; whether to sick with Glivec or try a second or 3rd

generation drug,

thanks again,

best wishes,

Barbara

[Guest guest]

" Good on ya "   Barbara, stick with what you know works!  Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: Barbara Meunier <Barbsm@...>

Subject: [ ] Thankyou

Date: Tuesday, June 16, 2009, 3:43 PM

I'd like to thank all of you for taking the time to give your point of

view with regards to my question. I must say that your answers echo exactly

what I was thinking. Dr N. is a good dr - there must be a good reason for him

accepting to do this trial.

Maybe they're worried about Glivec not giving really long lasting remissions,

maybe they think that Tasigna gives deeper remissions; having said that I'm

PCR-U most of the time.

He told me today that Tasignia is generally better tolerated by patients, but

I'm very sensitive to all drugs (look what happened with my Ara-C) & from what

i've heard about rashes & pancreatitis, low blood counts, I think I'd prefer to

stick with the devil I know.

I took a while to accept it - but I suppose it's better to be fat & healthy than

slim & sick.

I will ask Dr N. why he was so suggested this trial to me - it's not as if i

could do any better than PCR-U.

I will be seeing him in September, but will mail him before to ask him.

I feel kind of guilty having brought up this subject as i know that many

patients have no choice & don't get the results they were hoping for or get

really bad side effects with glivec or other drugs, but I can't help thinking

that in the months or years to come, more & more of us will find ourselves faced

with such choices; whether to sick with Glivec or try a second or 3rd

generation drug,

thanks again,

best wishes,

Barbara