Re: Tasigna To , From Lynn

[Guest guest]

Dear ,

I read you post about Disney and I just had to laugh! About 2 years

ago, I flew with my family to So. California to visit family and have

a vacation.

I have a friend who worked at Disney at the time and gave us 4 FREE

passes to use Disneyland and California Adventure for one day. My

heart sank as I've been to Disney but not since being Dx'd and I knew

I could never handle the mega long lines and endless standing. I

wanted to be there for my girls and hubby, but part of me didn't want

to be there, as I knew I would be so royally exhausted and then it

would ruin it for me for the next few days too. Well, my great

friend also got me a FREE wheelchair too, and she said, " Don't feel

GUILTY! Do it for yourself and your family and have a GREAT DAY! "

Well, my kids just loved having Mom in the wheelchair that day.

Since I was in the chair, it gave the entire family instant access to

all of the rides! NO WAITING, whatsoever! We did both parks in one

day and hit almost every ride! My kids made me the Queen of the Day,

and loved it! They said, " Mom, Leukemia sucks, but getting the

wheelchair was the best thing that could have happened this trip. "

They were right! ;-)

My poor hubby had it hardest that day, as he had to push me. Oh

wah! :-)

Sincerely,

Lynn

> Hang in there girl, you are NOT the only one. I have been

through the

> winger with symptoms and have been hospitalized, ER's, etc for 2

years now. I

> have been the healthiest the last 6 months as I quit work and went

on

> disability. 2 months ago, I switched from Gleevec to Spyrcel. I am

enjoying less

> symptoms and the ones that do remain, there are not as severe as on

Gleevec.

>

> As far as disability goes. I was approved right away but I was very

> involved with it. I called the lady who was making my case at least

weekly. I

> wanted to make sure she knew I was a person and not just a case in

a folder on

> her desk. I explained every detail of the symptoms. I am NOT

disabled due to

> having cancer, I am disabled due to side effects, ( and I made that

clear).

> I also have a lot of pain from osteoporosis as well as bulging disk

and a

> tear in my lumbar spine area. If your doctors will support you then

I would

> continue fighting for it. My 3 doctors (medical, oncologist and CML

specialist)

> encouraged me to stop working as I was literally ending up

dehydrated and in

> the hospital more then monthly. I pay the price for doing anything

fun or

> out of the daily schedule. Such as if we took the kids to

Disneyland, I had

> to be in my wheel chair as I couldn't stand the walking with pain

and the

> extreme fatigue. I would also with that, pay for it the first 2

days home. Be

> an advocate for yourself and get what you need.

>

> This is a tough disease and it seems like there are people to sail

through

> it and that it wonderful, God Bless them but there are some that

seem to have

> every noted side effects under the sun. Unfortunately that sucks!

But those

> are the cards I have been dealt with and I intend to make the best

of it. I

> certainly don't feel up to Par everyday and I have days when I am

depressed

> and angry, I go through the " why me's " just like everyone else. We

have to

> be strong, continue with a positive attitude and most of all have

hope!

>

> Just remember that you are never alone with this. We are all here

just an

> email away. If you are having a bad day, get on a write back it on

here. Its

> very therapeutic. That is why I started my blog on caringbridge. If

I need

> to talk, I can get on and write and it does help.

>

> Drop me a line whenever you'd like. I hope your spirits pick up

soon.

> Brighter days are ahead!

>

> hugs and hope

> 35

> CML 5/13/05

> Spyrcel 100mg

> Wife and mother of 3 (12,8,6)

>

> ************************************** See what's new at

http://www.aol.com

>

>

[Guest guest]

Even if you are not in a wheelchair, Disney (Disneyland and Walt Disney

World)

will give you a handicap pass that will allow you to get to the front of the

line.

My kids appreciate Daddy getting a " Fast Pass " to all of the rides. In

fact, some

of my friends now want to join us as they know they can get through Disney

much

faster than normal. You go to guest services in whatever park you are

visiting and

explain to them that you have Leukemia and they will write you a pass for

you and

your party. You do not need a doctor's letter at least in Orlando. I have

never been

to Disneyland, but I assume it works at any Disney Park.

Normally, I can last about 4 hours standing and riding, and with the

disability pass,

we are able to see a lot before Daddy has to go rest.

So wheelchair or not, you can enjoy the parks. We go about three times per

year.

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 11/8/2007 10:35:48 P.M. Eastern Standard Time,

no_reply writes:

Dear ,

I read you post about Disney and I just had to laugh! About 2 years

ago, I flew with my family to So. California to visit family and have

a vacation.

I have a friend who worked at Disney at the time and gave us 4 FREE

passes to use Disneyland and California Adventure for one day. My

heart sank as I've been to Disney but not since being Dx'd and I knew

I could never handle the mega long lines and endless standing. I

wanted to be there for my girls and hubby, but part of me didn't want

to be there, as I knew I would be so royally exhausted and then it

would ruin it for me for the next few days too. Well, my great

friend also got me a FREE wheelchair too, and she said, " Don't feel

GUILTY! Do it for yourself and your family and have a GREAT DAY! "

Well, my kids just loved having Mom in the wheelchair that day.

Since I was in the chair, it gave the entire family instant access to

all of the rides! NO WAITING, whatsoever! We did both parks in one

day and hit almost every ride! My kids made me the Queen of the Day,

and loved it! They said, " Mom, Leukemia sucks, but getting the

wheelchair was the best thing that could have happened this trip. "

They were right! ;-)

My poor hubby had it hardest that day, as he had to push me. Oh

wah! :-)

Sincerely,

Lynn

>

> Thanks . I'm working 2 full days a week (used to work 5+

before CML) and I've tried to work more days and can't do it. The

lady from disability actually gave me a hard time because we went to

DisneyWorld in Sept. I was so mad. She was like, well how can you

go to disney with such fatigue. I was like..I purchased a Rascall

type scooter and drove it on the plane and all through Disney feeling

like a goon but darnit my kid went to Disney and we all had a blast.

I even asked my in-laws to come so that they could watch my son while

I rested so that I could do all the fun things he wanted to when he

wanted to.

> Andy and I had always planned on taking our kids to Disney once a

year at least until they were in school. We always talked about it.

We went on our first anniversary to Disney, even before Wyatt was

concieved and we had always said that we wanted to bring our kids

back every year.

> When I was DX Wyatt was 22 months and we went the following May.

We had the best time and made so many wonderful memories. Granted

the side effects didn't take a vacation but it was so nice to just be

kind of like a normal family for a little while. The disability lady

actually asked me how I dealt with the diareah on the long plane

ride...I'm like...it's a little over 2 hours to Florida from Logan

and they have a bathroom. Then she asked how I delt with it in

Disney...uh duh they have bathrooms...Disney...uh duh they have bathroo

Anyway, I really felt like I was a bad person for going to Disney.

It's basically the only vacation we do and we use our tax money to

pay for it each year, KWIM? UGH! Anyway, thanks for letting me vent

about them. We just switched to Unim from Assurant and I'm crossing

my fingers that the new disability person will be nicer and more

understanding.

> Thanks again!

> :}

>

>

> vegasrnjen@. vegasrnj

> Hang in there girl, you are NOT the only one. I have been

through the

> winger with symptoms and have been hospitalized, ER's, etc for 2

years now. I

> have been the healthiest the last 6 months as I quit work and went

on

> disability. 2 months ago, I switched from Gleevec to Spyrcel. I am

enjoying less

> symptoms and the ones that do remain, there are not as severe as on

Gleevec.

>

> As far as disability goes. I was approved right away but I was very

> involved with it. I called the lady who was making my case at least

weekly. I

> wanted to make sure she knew I was a person and not just a case in

a folder on

> her desk. I explained every detail of the symptoms. I am NOT

disabled due to

> having cancer, I am disabled due to side effects, ( and I made that

clear).

> I also have a lot of pain from osteoporosis as well as bulging disk

and a

> tear in my lumbar spine area. If your doctors will support you then

I would

> continue fighting for it. My 3 doctors (medical, oncologist and CML

specialist)

> encouraged me to stop working as I was literally ending up

dehydrated and in

> the hospital more then monthly. I pay the price for doing anything

fun or

> out of the daily schedule. Such as if we took the kids to

Disneyland, I had

> to be in my wheel chair as I couldn't stand the walking with pain

and the

> extreme fatigue. I would also with that, pay for it the first 2

days home. Be

> an advocate for yourself and get what you need.

>

> This is a tough disease and it seems like there are people to sail

through

> it and that it wonderful, God Bless them but there are some that

seem to have

> every noted side effects under the sun. Unfortunately that sucks!

But those

> are the cards I have been dealt with and I intend to make the best

of it. I

> certainly don't feel up to Par everyday and I have days when I am

depressed

> and angry, I go through the " why me's " just like everyone else. We

have to

> be strong, continue with a positive attitude and most of all have

hope!

>

> Just remember that you are never alone with this. We are all here

just an

> email away. If you are having a bad day, get on a write back it on

here. Its

> very therapeutic. That is why I started my blog on caringbridge. If

I need

> to talk, I can get on and write and it does help.

>

> Drop me a line whenever you'd like. I hope your spirits pick up

soon.

> Brighter days are ahead!

>

> hugs and hope

> 35

> CML 5/13/05

> Spyrcel 100mg

> Wife and mother of 3 (12,8,6)

>

> ************ **** **** ************<WBR>*****

_http://www.aol.htt_ (http://www.aol.com/)

>

>

[Guest guest]

Thanks Matt!!! I appreciate the info!

:}

mtmaynor@... wrote:

Even if you are not in a wheelchair, Disney (Disneyland and Walt Disney

World)

will give you a handicap pass that will allow you to get to the front of the

line.

My kids appreciate Daddy getting a " Fast Pass " to all of the rides. In

fact, some

of my friends now want to join us as they know they can get through Disney

much

faster than normal. You go to guest services in whatever park you are

visiting and

explain to them that you have Leukemia and they will write you a pass for

you and

your party. You do not need a doctor's letter at least in Orlando. I have

never been

to Disneyland, but I assume it works at any Disney Park.

Normally, I can last about 4 hours standing and riding, and with the

disability pass,

we are able to see a lot before Daddy has to go rest.

So wheelchair or not, you can enjoy the parks. We go about three times per

year.

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 11/8/2007 10:35:48 P.M. Eastern Standard Time,

no_reply writes:

Dear ,

I read you post about Disney and I just had to laugh! About 2 years

ago, I flew with my family to So. California to visit family and have

a vacation.

I have a friend who worked at Disney at the time and gave us 4 FREE

passes to use Disneyland and California Adventure for one day. My

heart sank as I've been to Disney but not since being Dx'd and I knew

I could never handle the mega long lines and endless standing. I

wanted to be there for my girls and hubby, but part of me didn't want

to be there, as I knew I would be so royally exhausted and then it

would ruin it for me for the next few days too. Well, my great

friend also got me a FREE wheelchair too, and she said, " Don't feel

GUILTY! Do it for yourself and your family and have a GREAT DAY! "

Well, my kids just loved having Mom in the wheelchair that day.

Since I was in the chair, it gave the entire family instant access to

all of the rides! NO WAITING, whatsoever! We did both parks in one

day and hit almost every ride! My kids made me the Queen of the Day,

and loved it! They said, " Mom, Leukemia sucks, but getting the

wheelchair was the best thing that could have happened this trip. "

They were right! ;-)

My poor hubby had it hardest that day, as he had to push me. Oh

wah! :-)

Sincerely,

Lynn

>

> Thanks . I'm working 2 full days a week (used to work 5+

before CML) and I've tried to work more days and can't do it. The

lady from disability actually gave me a hard time because we went to

DisneyWorld in Sept. I was so mad. She was like, well how can you

go to disney with such fatigue. I was like..I purchased a Rascall

type scooter and drove it on the plane and all through Disney feeling

like a goon but darnit my kid went to Disney and we all had a blast.

I even asked my in-laws to come so that they could watch my son while

I rested so that I could do all the fun things he wanted to when he

wanted to.

> Andy and I had always planned on taking our kids to Disney once a

year at least until they were in school. We always talked about it.

We went on our first anniversary to Disney, even before Wyatt was

concieved and we had always said that we wanted to bring our kids

back every year.

> When I was DX Wyatt was 22 months and we went the following May.

We had the best time and made so many wonderful memories. Granted

the side effects didn't take a vacation but it was so nice to just be

kind of like a normal family for a little while. The disability lady

actually asked me how I dealt with the diareah on the long plane

ride...I'm like...it's a little over 2 hours to Florida from Logan

and they have a bathroom. Then she asked how I delt with it in

Disney...uh duh they have bathrooms...Disney...uh duh they have bathroo

Anyway, I really felt like I was a bad person for going to Disney.

It's basically the only vacation we do and we use our tax money to

pay for it each year, KWIM? UGH! Anyway, thanks for letting me vent

about them. We just switched to Unim from Assurant and I'm crossing

my fingers that the new disability person will be nicer and more

understanding.

> Thanks again!

> :}

>

>

> vegasrnjen@. vegasrnj

> Hang in there girl, you are NOT the only one. I have been

through the

> winger with symptoms and have been hospitalized, ER's, etc for 2

years now. I

> have been the healthiest the last 6 months as I quit work and went

on

> disability. 2 months ago, I switched from Gleevec to Spyrcel. I am

enjoying less

> symptoms and the ones that do remain, there are not as severe as on

Gleevec.

>

> As far as disability goes. I was approved right away but I was very

> involved with it. I called the lady who was making my case at least

weekly. I

> wanted to make sure she knew I was a person and not just a case in

a folder on

> her desk. I explained every detail of the symptoms. I am NOT

disabled due to

> having cancer, I am disabled due to side effects, ( and I made that

clear).

> I also have a lot of pain from osteoporosis as well as bulging disk

and a

> tear in my lumbar spine area. If your doctors will support you then

I would

> continue fighting for it. My 3 doctors (medical, oncologist and CML

specialist)

> encouraged me to stop working as I was literally ending up

dehydrated and in

> the hospital more then monthly. I pay the price for doing anything

fun or

> out of the daily schedule. Such as if we took the kids to

Disneyland, I had

> to be in my wheel chair as I couldn't stand the walking with pain

and the

> extreme fatigue. I would also with that, pay for it the first 2

days home. Be

> an advocate for yourself and get what you need.

>

> This is a tough disease and it seems like there are people to sail

through

> it and that it wonderful, God Bless them but there are some that

seem to have

> every noted side effects under the sun. Unfortunately that sucks!

But those

> are the cards I have been dealt with and I intend to make the best

of it. I

> certainly don't feel up to Par everyday and I have days when I am

depressed

> and angry, I go through the " why me's " just like everyone else. We

have to

> be strong, continue with a positive attitude and most of all have

hope!

>

> Just remember that you are never alone with this. We are all here

just an

> email away. If you are having a bad day, get on a write back it on

here. Its

> very therapeutic. That is why I started my blog on caringbridge. If

I need

> to talk, I can get on and write and it does help.

>

> Drop me a line whenever you'd like. I hope your spirits pick up

soon.

> Brighter days are ahead!

>

> hugs and hope

> 35

> CML 5/13/05

> Spyrcel 100mg

> Wife and mother of 3 (12,8,6)

>

> ************ **** **** ************<WBR>*****

_http://www.aol.htt_ (http://www.aol.com/)

>

>

[Guest guest]

Hey Lynn,

If you go to Disney often enough you may want to look into a scooter. You can

get them on craigslist used for like $300 and they are so wonderful when you

need them. I don't use mine often, long shopping trips, parks and museums and

of course Disney but it is so great to have when I need it. Thanks for your

input on Disney, I got over the imbarrasment mostly but sometimes it was hard

because I don't necessarily LOOK sick so people assume I'm faking it. I wish I

could print a sign that said " no I realy am sick, I have cancer " but then I

realized that their opinion didn't matter...it was the memories with my family

that mattered. Anyway, thanks for your response. I've realy enjoyed this

thread.

:}

snickersunny <no_reply > wrote:

Dear ,

I read you post about Disney and I just had to laugh! About 2 years

ago, I flew with my family to So. California to visit family and have

a vacation.

I have a friend who worked at Disney at the time and gave us 4 FREE

passes to use Disneyland and California Adventure for one day. My

heart sank as I've been to Disney but not since being Dx'd and I knew

I could never handle the mega long lines and endless standing. I

wanted to be there for my girls and hubby, but part of me didn't want

to be there, as I knew I would be so royally exhausted and then it

would ruin it for me for the next few days too. Well, my great

friend also got me a FREE wheelchair too, and she said, " Don't feel

GUILTY! Do it for yourself and your family and have a GREAT DAY! "

Well, my kids just loved having Mom in the wheelchair that day.

Since I was in the chair, it gave the entire family instant access to

all of the rides! NO WAITING, whatsoever! We did both parks in one

day and hit almost every ride! My kids made me the Queen of the Day,

and loved it! They said, " Mom, Leukemia sucks, but getting the

wheelchair was the best thing that could have happened this trip. "

They were right! ;-)

My poor hubby had it hardest that day, as he had to push me. Oh

wah! :-)

Sincerely,

Lynn

> Hang in there girl, you are NOT the only one. I have been

through the

> winger with symptoms and have been hospitalized, ER's, etc for 2

years now. I

> have been the healthiest the last 6 months as I quit work and went

on

> disability. 2 months ago, I switched from Gleevec to Spyrcel. I am

enjoying less

> symptoms and the ones that do remain, there are not as severe as on

Gleevec.

>

> As far as disability goes. I was approved right away but I was very

> involved with it. I called the lady who was making my case at least

weekly. I

> wanted to make sure she knew I was a person and not just a case in

a folder on

> her desk. I explained every detail of the symptoms. I am NOT

disabled due to

> having cancer, I am disabled due to side effects, ( and I made that

clear).

> I also have a lot of pain from osteoporosis as well as bulging disk

and a

> tear in my lumbar spine area. If your doctors will support you then

I would

> continue fighting for it. My 3 doctors (medical, oncologist and CML

specialist)

> encouraged me to stop working as I was literally ending up

dehydrated and in

> the hospital more then monthly. I pay the price for doing anything

fun or

> out of the daily schedule. Such as if we took the kids to

Disneyland, I had

> to be in my wheel chair as I couldn't stand the walking with pain

and the

> extreme fatigue. I would also with that, pay for it the first 2

days home. Be

> an advocate for yourself and get what you need.

>

> This is a tough disease and it seems like there are people to sail

through

> it and that it wonderful, God Bless them but there are some that

seem to have

> every noted side effects under the sun. Unfortunately that sucks!

But those

> are the cards I have been dealt with and I intend to make the best

of it. I

> certainly don't feel up to Par everyday and I have days when I am

depressed

> and angry, I go through the " why me's " just like everyone else. We

have to

> be strong, continue with a positive attitude and most of all have

hope!

>

> Just remember that you are never alone with this. We are all here

just an

> email away. If you are having a bad day, get on a write back it on

here. Its

> very therapeutic. That is why I started my blog on caringbridge. If

I need

> to talk, I can get on and write and it does help.

>

> Drop me a line whenever you'd like. I hope your spirits pick up

soon.

> Brighter days are ahead!

>

> hugs and hope

> 35

> CML 5/13/05

> Spyrcel 100mg

> Wife and mother of 3 (12,8,6)

>

> ************************************** See what's new at

http://www.aol.com

>

>