For Greg

[Guest guest]

Hello Leanne & Owen

We have exchanged a message or two before. I am in Melbourne. With my experience

of PA since being a teenager, and my training as a teacher, counsellor and

priest, perhaps I can be of more help to you than the other way around. Owen

must be dealing with a huge sense of grief for his lost childhood (if not yet,

then it is to come). I know what it is like to not be able to do most of the

things my peers were doing and feeling old before my time.

I spent my high school years on crutches, not being able to play any sport, and

therefore not fitting in with many people at school at all. Young teens feel

different enough without having an odd illness as well.

I have worked with many children and young people with illness or disability of

some sort or other. I am a foster parent - the only work I can do at present. I

have just been asked to take on twin 13 year old boys with cerebral palsey. The

jury is still out on that one.

Does Owen ever use msn or ICQ ? Perhaps we could chat. My msn address is

skruff16@... and my ICQ number is 118208597

Please keep in touch.

Greg.

[ ] for Greg

Hey, Greg.

How are you? I'm writing to respond to your posting. We live in

Tasmania.

You also wanted to speak to someone who's had PA since they were in

their teens. Well, we're sort of that. I'm the mum of Owen who has

severe PA, he's 14 now. He's only had it for about 9 months.

Where do you come from? We've lived here for 2 years, having moved

from NSW, north of Sydney.

Anyway, if we can help, just let us know.

Leanne

[Guest guest]

Leanne,

I used to live in NSW for a short time. A little place called Chipping Norton,

ever heard of it?

[ ] for Greg

Hey, Greg.

How are you? I'm writing to respond to your posting. We live in

Tasmania.

You also wanted to speak to someone who's had PA since they were in

their teens. Well, we're sort of that. I'm the mum of Owen who has

severe PA, he's 14 now. He's only had it for about 9 months.

Where do you come from? We've lived here for 2 years, having moved

from NSW, north of Sydney.

Anyway, if we can help, just let us know.

Leanne

[Guest guest]

Sue from Sale in Australia - age 50-

Diagnosed with PA 18 months ago but have had psoriasis since 12 or 13.

Hi Greg,

nice to speak with another Aussie.

I'm currently taking mtx 25 mg and folic acid but it is, at best just

keeping things at bay. My rheumatologist has indicated that I may be

able to go onto Embrel next year if it goes on to our pharmaceutical

benefits scheme.

Reading through the recent postings about the difficulty even getting

the flu injection in America, you can't help thinking how lucky we

are here - with all its shortcomings our health system appears to be

a lot better than our poor friends in the U.S.A.

Bye for now

Sue from Sale

-- In , " Greg "

<skruff@p...> wrote:

>

> Hello Leanne & Owen

>

> We have exchanged a message or two before. I am in Melbourne. With

my experience of PA since being a teenager, and my training as a

teacher, counsellor and priest, perhaps I can be of more help to you

than the other way around. Owen must be dealing with a huge sense of

grief for his lost childhood (if not yet, then it is to come). I know

what it is like to not be able to do most of the things my peers were

doing and feeling old before my time.

>

> I spent my high school years on crutches, not being able to play

any sport, and therefore not fitting in with many people at school at

all. Young teens feel different enough without having an odd illness

as well.

>

> I have worked with many children and young people with illness or

disability of some sort or other. I am a foster parent - the only

work I can do at present. I have just been asked to take on twin 13

year old boys with cerebral palsey. The jury is still out on that

one.

>

> Does Owen ever use msn or ICQ ? Perhaps we could chat. My msn

address is skruff16@h... and my ICQ number is 118208597

>

> Please keep in touch.

>

> Greg.

> [ ] for Greg

>

>

>

>

> Hey, Greg.

> How are you? I'm writing to respond to your posting. We live in

> Tasmania.

> You also wanted to speak to someone who's had PA since they were

in

> their teens. Well, we're sort of that. I'm the mum of Owen who

has

> severe PA, he's 14 now. He's only had it for about 9 months.

> Where do you come from? We've lived here for 2 years, having

moved

> from NSW, north of Sydney.

> Anyway, if we can help, just let us know.

> Leanne

>

>

>

>

>

[Guest guest]

Hi Sue

I can't find a decent rheumatologist. MTX doesn't work for me until 40mg a week.

I am cutting it down at the moment, currently on 20mg and I have psoriasis all

over my face, through my hair and shoulders, and the joint pain is stopping me

from sleeping.

Good to make contact with another aussie. Write to my private email next time.

Greg.

[ ] Re: for Greg

Sue from Sale in Australia - age 50-

Diagnosed with PA 18 months ago but have had psoriasis since 12 or 13.

Hi Greg,

nice to speak with another Aussie.

I'm currently taking mtx 25 mg and folic acid but it is, at best just

keeping things at bay. My rheumatologist has indicated that I may be

able to go onto Embrel next year if it goes on to our pharmaceutical

benefits scheme.

Reading through the recent postings about the difficulty even getting

the flu injection in America, you can't help thinking how lucky we

are here - with all its shortcomings our health system appears to be

a lot better than our poor friends in the U.S.A.

Bye for now

Sue from Sale

-- In , " Greg "

[Guest guest]

Hi Leanne,

Sorry to butt in. I just wanted to say that I hope they can do something for

Owen to slow the advance of the disease down or even better stop it in its

tracks. He deserves something good to happen to him. He sounds like a very

courageous young man.

Good luck,

[Guest guest]

Dear Leanne and Owen.

I'll accept the hug. The last 2 weeks have been bad. I am trying to come off the

medication so my Rheumatologist can see my full condition next week. Most

unreasonable as far as I am concerned. Not sleeping doesn't help in the

slightest. This afternoon I am going to the International Diabetes Institute and

they are going to put me on insulin. I really don't want to be injecting myself

but ....

There are times when all the health problems gang up on you. That seems to

happen when there are money problems and relationship problems etc etc all at

the same time. I keep thinking if I was well, I could do such and such to fix

this but that just shows that I haven't really accepted my illness. What's that

poem or song about not going quietly into the night, that we should rage against

it. Well, I have not given up yet. I am still raging against it. And that is

exhausting and frustrating and leads to more pain and depression.

Here I was hoping that I would be able to be of help to you and Owen, but I end

up just going crook to you. Geez I need a holiday!

Best wishes

Greg.

[ ] for Greg

You need a big hug.

I know that Owen's Rheumy is in Hobart, which is a fair way away,

but he's great. Weird, but great. His name is Dr. Graham, and

his phone no. is 03 6223 3801. Maybe your GP could give him a call or

something. We're all here, I know that doesn't help, but please look

after yourself. We all care

Love Leanne

[Guest guest]

,

That other group you mentioned does not exist as far as is concerned. I

have searched for it using several different keywords and the title and

says it does not exist.

Greg.

[ ] for Greg

HI Greg,

Hope you are feeling better today...

I hope you don't mind but on the other board I mentioned yesterday I

wrote a post to a woman with PA in Melbourne. I did not mention

your name but mentioned you were at your wits end and did not have a

good/supportive rheumy. She wrote back to me saying she had an

excellent rheumatologist in Melbourne who also had offices in some

of the suburbs. She offered to let me give you her e-mail address

so you could connect with her directly. Her email address is

edson@....

I hope you will contact her - her name is Roslyn and she posts very

caring and supportive messages on the board.

We're all thinking of you,

Gentle hugs,

(Vancouver, BC)

[Guest guest]

What's that poem or song about not going quietly into the night, that

we should rage against it.

Here's the poem, Greg -- one of my favs! Cat

Do Not Go Gentle Into That Good Night

Dylan

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless, me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

From The Poems of Dylan , published by New Directions.

Copyright © 1952, 1953 Dylan . Copyright © 1937, 1945, 1955,

1962, 1966, 1967 the Trustees for the Copyrights of Dylan .

Copyright © 1938, 1939, 1943, 1946, 1971 New Directions Publishing

Corp.

[Guest guest]

Thank you Cat. That was beautiful.

> What's that poem or song about not going quietly into the night,

that

> we should rage against it.

>

> Here's the poem, Greg -- one of my favs! Cat

>

> Do Not Go Gentle Into That Good Night

> Dylan

>

>

> Do not go gentle into that good night,

> Old age should burn and rave at close of day;

> Rage, rage against the dying of the light.

>

> Though wise men at their end know dark is right,

> Because their words had forked no lightning they

> Do not go gentle into that good night.

>

> Good men, the last wave by, crying how bright

> Their frail deeds might have danced in a green bay,

> Rage, rage against the dying of the light.

>

> Wild men who caught and sang the sun in flight,

> And learn, too late, they grieved it on its way,

> Do not go gentle into that good night.

>

> Grave men, near death, who see with blinding sight

> Blind eyes could blaze like meteors and be gay,

> Rage, rage against the dying of the light.

>

> And you, my father, there on the sad height,

> Curse, bless, me now with your fierce tears, I pray.

> Do not go gentle into that good night.

> Rage, rage against the dying of the light.

>

>

> From The Poems of Dylan , published by New Directions.

> Copyright © 1952, 1953 Dylan . Copyright © 1937, 1945, 1955,

> 1962, 1966, 1967 the Trustees for the Copyrights of Dylan .

> Copyright © 1938, 1939, 1943, 1946, 1971 New Directions Publishing

> Corp.

[Guest guest]

Thank you. Thank you. Thank you.

[ ] Re: for Greg

What's that poem or song about not going quietly into the night, that

we should rage against it.

Here's the poem, Greg -- one of my favs! Cat

Do Not Go Gentle Into That Good Night

Dylan

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless, me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

From The Poems of Dylan , published by New Directions.

Copyright © 1952, 1953 Dylan . Copyright © 1937, 1945, 1955,

1962, 1966, 1967 the Trustees for the Copyrights of Dylan .

Copyright © 1938, 1939, 1943, 1946, 1971 New Directions Publishing

Corp.

[Guest guest]

(Honestly, I would love for someone to

discuss the major change in the treatment of CML over the past 10

years. It is certainly something that has been revolutionary.)

_____________________

Hi Greg,

You have a number of people on this list who can speak from the 10 year

perspective....I can think of Bobbie, Zavie, Lottie, Zazzie,

myself........and there are others.

Would you like us to do that separately from our form interview so it is

easier for you to pick that out. We were there when there was very limited

hope with this dx....most of us knew a window of 3-5 or 5-7 year expected

survival. And then we fought to get on Gleevec, or went into lotteries (and

some passed on while waiting for there spot in a trial).

This was all part of my history with the form I filled out on your

website....but it got erased (poof!).

Maybe those of us with a 10 year or more history can do a separage e-mail

to you outlining that aspect (how it affected us personally, our families,

etc).

Just a thought.

C.