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Ms. Manners

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Aaah come on now, do you think we are all that naive? All the persons

who read these posts regularly know you have returned to stir up

trouble anonymously. Shortly you will start posting by your real name

and answering your pseudonym. This is a common practice on all

lists/boards by disgruntled people

I am not sure why you are so concerned about who runs this or who

runs that. Do you have control problems? You have your own board up

and running so why can't can't stick to getting that up to speed?

I wish you hadn't lied about your identity. Your posts can be

informative and helpful but this backroom stuff is sleazy.

> Hello Zavie,

>

> My e-mail address does work, I have chosen for it not to show up

> because Iam trying to reduce the amount of spam. That being said,

my

> e-mail address does work as I do get mail. Perhpas if you have it

> you should re-check it?

>

> Thanks for your offer to share, but I prefer not to provide

> additional information other than I am an American and live in the

> states. Each of us has the choice of what we wish to share or not,

> that is one of our basic rights I believe. Thanks also for your

> offer to join a zero club, but I would take a pass on that too. I

> have a family and I work quite hard and have acieved a fair success

> in my life. Having CML is not like joing a golf club, and I find

it

> amusing that people refer to it in such a cavalier way. Please do

> not be insulted I realize from reading about you that you are

retired

> and for you and folks like you this can be more like a hobby. For

> you and others this may just bve the best way to handle this

disease.

>

> I have to ask, are you one of the moderators of this group or

owner?

> I belong to other groups for some of my hobbies and we always seem

to

> know who the person is for us to go to with questions about how the

> group is run. There doesn't seem to be anyplace here for this.

Why

> would this information be difficult to locate, this is a support

> group for CML no? Again, this is all meant in a supportive way. I

> just find that for new people coming here it is awkward to figure

out

> who is who?

>

> Perhpas you can clarify a few of these points for me. Or if anyone

> else in the gruop can, please feel free to present your perspective.

>

> Seems like our newbie friend Don, is getting help from one of the

top

> CML experts.

>

> Good luck!

> JM

>

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Wow I must admit I was taken back by this post myself. Although the request

was made not to take offense to the questions and comments, I really was

offended for entire group...

The golf Club statement was rude and tasteless as were most of the other

questions and comments.

I personally am not retried yet. I was diagnosed at age 35 with 4 children

to care for. Now age 41 and soon to be 42, I can't tell you how grateful I

am to be part of the zero club # 111 and this is something that we all hope

& pray everyone achieves.

I have been fairly successful in my life too depending on what part of life

JM is referring to?

As for CML being part of my successful life... well that depends on how one

chooses to look at it. No. I wish I never had it but the overall affects has

added to my character and how I choose to live and treat others. So I would

have to say that yes it has contributed to my success in life. And to be

quite honest I'd rather have it then one of the little children in this

world who have to endure such illnesses.

I have a career and a family with no time to join any hobby clubs, but I am

grateful I am healthy enough to say so.

Lastly' I would like to add that if it weren't for people before me almost 7

years ago sharing their personal experiences along with all the positive

feedback, I may not be alive today to have a career, a family and yes the

benefits of success!

Because of that I choose to share whenever I can with whomever I can and

that includes information about me, my health or whatever.

Privacy? Just imagine what it would have been like if Gleevec and the other

drugs were kept private???

Where would we all be? I don't recall anyone on this group or any other ever

asking for our social security #

As for the thought that this could be someone who may have been part of this

group previously returning under a phony identity just to antagonize? That's

very sad...What's even sadder is the thought of this individual being one

who has so much information to share with all of us and the newbies that are

searching for help.

I really hope this is not the case and if it is I pray that the individual

can set aside any personal differences as there really shouldn't be any

here.

One of the quotes that have contributed to my success for many years is and

will always be

" You never loose when you share "

To whoever wrote that post: you really sound like a highly intellectual

individual, which means you obviously have a lot to contribute not only to

this group but yourself too?

Maybe you should step back and reevaluate your post as it really did come

across as very rude whether it was meant to or not.

Also, please note that in no way am I meaning to offend you or any one on

this group.

Have a great day!

ez

dx 5-2000 Interferon, hydrea & ARC

6-2001 Gleevec 400 mgs

8-2001 # 111 Member of the Zero club and proud of it!

PCRU & holding

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