Re: Open Letter concerning comments

[Guest guest]

Dear Trevor-

I am not sure where all the animosity comes from between the groups of CML.

I can only simply respond by my own opinion(s). I for one, would love to

see less stressful, upsetting emails from people on these sites. I come here

for support, questions and information. I have found these sites to be

beneficial and supportive, especially during the early months of diagnosis.

Why people have to call out others on these sites is beyond me and I think

we miss the reason why these sites are here. I know that if any newly

diagnosed patients are getting on this site lately, they would be turned away by

the

talk. We should resort to being upbeat and supportive. I know Zavie and

his Zero club was a goal for me to set for myself to achieve, if nothing more

then something personal for me to try to get to. I think anything we can do

to encourage and support others, we should do. Even if that entails, climbing

a mountain for the CML society.

I think that peoples impressions about the remarks that someone on

disability could " climb a mountain " threw some people off. One person being

me. Make

no mistake about it, I am certainly not judging your wife. This is a

thought I had to myself. As a 35 year old mother of 3 young children who has

had

to file for disability due to the side effects of the Gleevec/CML, I couldn't

understand how someone could be on disability and Climb a mountain. I can

barely walk up a flight of steps without being winded, or get completely ready

in the morning with out feeling done for the day. I have since learned that

you don't live in the United States and that this is a goal, you wife has

chosen to achieve for her own personal means. I think whatever CML patients

have

to do to keep their life positive and achieve the things we set out to do,

we should do that. All of us together in the CML world need to stand up next

to each other and be supportive. We may not always understand or agree with

one another but I think there is enough negativity in the world and enough

stacked up against us that we should be positive and supportive to others

wearing our same shoes. We are all walking and climbing to the same goals. To

find a cure for CML and until then, bring as much positive light to the disease

and get people aware of CML.

I hope that everyone can put this behind us and move forward without the

personal attacks to each other and realize that we are all in the same boat.

We

are all fighting for the same thing. I wish nothing but the best for all of

you including your families and hope that we can all find the support and

knowledge on here that we originally found these sites to provide.

Best wishes to all-

Enjoy your climb-

Hugs-

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Thank-you very much for your comments my email was not meant to be upsetting

I was just trying to get the point across it has always been my goal since

my wife was diagnosed with cml to try and bring people together this is why

the previous email upset me so. We both are representatives for the Ontario

Region of the CML Society and want nothing more than to bring fellow CML'ers

together to talk about there experiences ups and downs and maybe learn from

one another this has always been our goal since starting with the Society.

The only thing I wanted to stress is that people need to realize before they

talk that they do not know the situation that other people are in and should

not make open comments about someone unless they have all the facts

Thank-you

>From: vegasrnjen@...

>Reply-

>

>Subject: Re: [ ] Open Letter concerning comments

>Date: Wed, 18 Jul 2007 12:21:09 EDT

>

>Dear Trevor-

>

>I am not sure where all the animosity comes from between the groups of

>CML.

>I can only simply respond by my own opinion(s). I for one, would love to

>see less stressful, upsetting emails from people on these sites. I come

>here

>for support, questions and information. I have found these sites to be

>beneficial and supportive, especially during the early months of

>diagnosis.

>

>Why people have to call out others on these sites is beyond me and I think

>we miss the reason why these sites are here. I know that if any newly

>diagnosed patients are getting on this site lately, they would be turned

>away by the

>talk. We should resort to being upbeat and supportive. I know Zavie and

>his Zero club was a goal for me to set for myself to achieve, if nothing

>more

>then something personal for me to try to get to. I think anything we can

>do

>to encourage and support others, we should do. Even if that entails,

>climbing

>a mountain for the CML society.

>

>I think that peoples impressions about the remarks that someone on

>disability could " climb a mountain " threw some people off. One person

>being me. Make

>no mistake about it, I am certainly not judging your wife. This is a

>thought I had to myself. As a 35 year old mother of 3 young children who

>has had

>to file for disability due to the side effects of the Gleevec/CML, I

>couldn't

>understand how someone could be on disability and Climb a mountain. I can

>barely walk up a flight of steps without being winded, or get completely

>ready

>in the morning with out feeling done for the day. I have since learned

>that

>you don't live in the United States and that this is a goal, you wife has

>chosen to achieve for her own personal means. I think whatever CML

>patients have

>to do to keep their life positive and achieve the things we set out to do,

>we should do that. All of us together in the CML world need to stand up

>next

>to each other and be supportive. We may not always understand or agree

>with

>one another but I think there is enough negativity in the world and enough

>stacked up against us that we should be positive and supportive to others

>wearing our same shoes. We are all walking and climbing to the same

>goals. To

>find a cure for CML and until then, bring as much positive light to the

>disease

>and get people aware of CML.

>

>I hope that everyone can put this behind us and move forward without the

>personal attacks to each other and realize that we are all in the same

>boat. We

>are all fighting for the same thing. I wish nothing but the best for all

>of

>you including your families and hope that we can all find the support and

>knowledge on here that we originally found these sites to provide.

>

>Best wishes to all-

>Enjoy your climb-

>Hugs-

> 35

>CML 5/13/05

>Gleevec 800mg

>Wife and mother of 3 (11,8,6)

>

>

>

>************************************** Get a sneak peek of the all-new AOL

>at

>http://discover.aol.com/memed/aolcom30tour

>

>

>

[Guest guest]

The last sentence in your comment sums up the point I tried to make

to your wife on SSI/Disability. It is good advice and should be taken

by all, including yourself.

M

>

> Thank-you very much for your comments my email was not meant to be

upsetting

> I was just trying to get the point across it has always been my

goal since

> my wife was diagnosed with cml to try and bring people together

this is why

> the previous email upset me so. We both are representatives for

the Ontario

> Region of the CML Society and want nothing more than to bring

fellow CML'ers

> together to talk about there experiences ups and downs and maybe

learn from

> one another this has always been our goal since starting with the

Society.

> The only thing I wanted to stress is that people need to realize

before they

> talk that they do not know the situation that other people are in

and should

> not make open comments about someone unless they have all the facts

>

> Thank-you

>

>

> >From: vegasrnjen@...

> >Reply-

> >

> >Subject: Re: [ ] Open Letter concerning comments

> >Date: Wed, 18 Jul 2007 12:21:09 EDT

> >

> >Dear Trevor-

> >

> >I am not sure where all the animosity comes from between the

groups of

> >CML.

> >I can only simply respond by my own opinion(s). I for one, would

love to

> >see less stressful, upsetting emails from people on these sites.

I come

> >here

> >for support, questions and information. I have found these sites

to be

> >beneficial and supportive, especially during the early months of

> >diagnosis.

> >

> >Why people have to call out others on these sites is beyond me and

I think

> >we miss the reason why these sites are here. I know that if any

newly

> >diagnosed patients are getting on this site lately, they would be

turned

> >away by the

> >talk. We should resort to being upbeat and supportive. I know

Zavie and

> >his Zero club was a goal for me to set for myself to achieve, if

nothing

> >more

> >then something personal for me to try to get to. I think

anything we can

> >do

> >to encourage and support others, we should do. Even if that

entails,

> >climbing

> >a mountain for the CML society.

> >

> >I think that peoples impressions about the remarks that someone on

> >disability could " climb a mountain " threw some people off. One

person

> >being me. Make

> >no mistake about it, I am certainly not judging your wife. This

is a

> >thought I had to myself. As a 35 year old mother of 3 young

children who

> >has had

> >to file for disability due to the side effects of the

Gleevec/CML, I

> >couldn't

> >understand how someone could be on disability and Climb a

mountain. I can

> >barely walk up a flight of steps without being winded, or get

completely

> >ready

> >in the morning with out feeling done for the day. I have since

learned

> >that

> >you don't live in the United States and that this is a goal, you

wife has

> >chosen to achieve for her own personal means. I think whatever

CML

> >patients have

> >to do to keep their life positive and achieve the things we set

out to do,

> >we should do that. All of us together in the CML world need to

stand up

> >next

> >to each other and be supportive. We may not always understand or

agree

> >with

> >one another but I think there is enough negativity in the world

and enough

> >stacked up against us that we should be positive and supportive

to others

> >wearing our same shoes. We are all walking and climbing to the

same

> >goals. To

> >find a cure for CML and until then, bring as much positive light

to the

> >disease

> >and get people aware of CML.

> >

> >I hope that everyone can put this behind us and move forward

without the

> >personal attacks to each other and realize that we are all in the

same

> >boat. We

> >are all fighting for the same thing. I wish nothing but the best

for all

> >of

> >you including your families and hope that we can all find the

support and

> >knowledge on here that we originally found these sites to provide.

> >

> >Best wishes to all-

> >Enjoy your climb-

> >Hugs-

> > 35

> >CML 5/13/05

> >Gleevec 800mg

> >Wife and mother of 3 (11,8,6)

> >

> >

> >

> >************************************** Get a sneak peek of the all-

new AOL

> >at

> >http://discover.aol.com/memed/aolcom30tour

> >

> >

> >