Re: Working?

[Guest guest]

It's working great in Hot and Sunny Las Vegas. Thanks for all you do .

Denyse

In a message dated 6/21/2006 12:49:16 P.M. Pacific Standard Time, jb50192@... writes:

Folks - if this is not working, we'll have to go back to the old and allow people in only by invitation.

Some of you may need to change some folders to receive message marked rather than SLL-CLL-edu.

As I said, outgoing mail should be posted to @...

But as of now I have no idea (except one person) whether you are receiving this.

If I don't get a sign of life soon, we'll go back to the old page.

[Guest guest]

it's working for me...

--- jb50192@... wrote:

> Folks - if this is not working, we'll have to go

> back to the old and allow

> people in only by invitation.

>

> Some of you may need to change some folders to

> receive message marked

> rather than SLL-CLL-edu.

>

> As I said, outgoing mail should be posted to

> @...

>

> But as of now I have no idea (except one person)

> whether you are receiving

> this.

>

> If I don't get a sign of life soon, we'll go back to

> the old page.

>

>

>

__________________________________________________

[Guest guest]

Appears to be working

[Guest guest]

Yes it works. Please don't go back to the "old page" . gordon jb50192@... wrote: Folks - if this is not working, we'll have to go back to the old and allow people in only by invitation. Some of you may need to change some folders to receive message marked rather than SLL-CLL-edu. As I said, outgoing mail should be posted to @... But as of

now I have no idea (except one person) whether you are receiving this. If I don't get a sign of life soon, we'll go back to the old page.

[Guest guest]

Works well for me. Perhaps this is a duplication msg from me. Chemo brain!!. buzz

[Guest guest]

Long time lurker... first time poster. You're coming in loud and clear out here in the forests of Ringwood, NJ!

Good job fixin' the problem, !_._,___

[Guest guest]

working - mel NZ

jb50192@... wrote:

>

> Folks - if this is not working, we'll have to go back to the old and

> allow people in only by invitation.

>

> Some of you may need to change some folders to receive message marked

> rather than SLL-CLL-edu.

>

> As I said, outgoing mail should be posted to @...

> <mailto:@...>

>

> But as of now I have no idea (except one person) whether you are

> receiving this.

>

> If I don't get a sign of life soon, we'll go back to the old page.

>

>

>

[Guest guest]

in case you didn't get my prior response i am receiving it bruce

[Guest guest]

I'm in. Bettie Jane - Tallahassee. Working? Folks - if this is not working, we'll have to go back to the old and allow people in only by invitation. Some of you may need to change some folders to receive message marked rather than SLL-CLL-edu. As I said, outgoing mail should be posted to @... But as of now I have no idea (except one person) whether you are receiving this. If I don't get a sign of life soon, we'll go back to the old page.

[Guest guest]

Received it .

- In , " bettie grant " <bettiejgrant@...> wrote:

>

> I'm in. Bettie Jane - Tallahassee.

>

> Working?

>

> Folks - if this is not working, we'll have to go back to the old

and allow people in only by invitation.

>

> Some of you may need to change some folders to receive message

marked rather than SLL-CLL-edu.

>

> As I said, outgoing mail should be posted to @...

>

> But as of now I have no idea (except one person) whether you are

receiving this.

>

> If I don't get a sign of life soon, we'll go back to the old page.

>

>

>

[Guest guest]

Got it, thanks!

On 6/24/06, lbakerishere <lbakerishere@...> wrote:

>

>

>

>

>

>

>

> Received it .

>

>

>

> - In , " bettie grant " <bettiejgrant@...> wrote:

> >

> > I'm in. Bettie Jane - Tallahassee.

> >

> > Working?

> >

> > Folks - if this is not working, we'll have to go back to the old

> and allow people in only by invitation.

> >

> > Some of you may need to change some folders to receive message

> marked rather than SLL-CLL-edu.

> >

>

> > As I said, outgoing mail should be posted to @...

>

> >

> > But as of now I have no idea (except one person) whether you are

> receiving this.

> >

> > If I don't get a sign of life soon, we'll go back to the old page.

> >

> >

> >

>

>

>

>

>

[Guest guest]

not a lot, you should feel almost nothing, or nothing at all.

the infection is either killed off or isn't that's how you know without a meter.

A milliamp meter (12 bucks at most hardware stores), set to dc volts will read

out around 2.4 volts or so if it's working.

if batteries are charged, and wires make contact, it will hit the germ and do

the job. with 2 AA's the volts are minimal, so time is longer to win over the

germ..you have to experiment to get it, but around 15-20 minutes usually should

work

bG

>

> I made a simple device using the photos - AA batteries, sponges, wires,

electrical tape. How do I know that I put it together correctly? Do you

actually feel anything when using it?

>

>

>

[Guest guest]

So , let me get this straight. You have CML AND two full-time jobs

and you feel tired all the time? No kidding, I stand amazed at what women

can do. I'm sure I'm much older, I was diagnosed at age 59, but I was sooo

slowed by the CML and treatment that there was no way I could do my career

job justice (I am a " now retired " CPA). In my condition I would be too

likely to really screw something up and get sued big time!

You have not mentioned your treatment, I assume you are on Gleevec? Welcome

to the wonderful world of Gleevec side effects. Yes, many of us have those

same symptoms and don't do half of what you are doing. I do hope that Bill

really understands just how lucky you are in dodging the bullet, I mean CML.

CML is a nasty killer. Before Gleevec and the new generation of medications

most of us would be dead or dieing a miserable death. It may seem simple to

just take a pill or two each day, but that pill is doing a powerful number

on your body to keep you alive... rejoice in that you will be here for your

children. You body is in a major struggle to live... a point often

overlooked by those who see us " seemingly healthy. " This is a great group

with lots of good people who know just what you are going through... keep

the faith and hang in there.

Troxel

dx 2/2003

On Fri, Mar 19, 2010 at 6:45 PM, <rnmichelle80@...> wrote:

>

>

> I was diagnosed with CML in June 2009. I work full-time and have a great

> family. My husband Bill, has been very helpful with all the change. I also

> have a 4 year old and a 1 year old who don;t understand much. Just wondering

> if anyone is having the same problem I am. I am very tired all the time and

> jsut feel like I want to stay in bed all day. Problem, I work full-time

> Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the kids and

> get them to bed. Then the clean up, laundry and anything else that needs

> done. Has anyone had luck trying to increase there energy or options I may

> have at thia point. Any advise will help.. Thanks so much.

>

> dx: June 29, 2009

> Started gleevac July 15, 2009

>

>

>

[Guest guest]

Hi : Welcome to our group. What your feeling is normal actually. Even

if you did not have CML you would be exhausted with this schedule you are on. I

think your doing great. If your really that fatigued, then you have to cut your

schedule in some ways. Full-Time work and 2 little children, plus everything

else you do.

Fatigue is one of the biggest complaints everyone seems to have.

I just do what I can do when I can do it. I am older than you, but you have to

try to pace yourself so the fatigue does not wipe you out.

I learned that if some things do not get done, then Oh Well. They will still be

there, and not going anywhere till I get to them.

So glad to welcome you to our group. Having a great husband for support will

get you through it all. I have one too.

A.

>

> I was diagnosed with CML in June 2009. I work full-time and have a great

family. My husband Bill, has been very helpful with all the change. I also

have a 4 year old and a 1 year old who don;t understand much. Just wondering if

anyone is having the same problem I am. I am very tired all the time and jsut

feel like I want to stay in bed all day. Problem, I work full-time Moday thur

Friday from 8:30 to 5. Come home cook dinner, bath the kids and get them to

bed. Then the clean up, laundry and anything else that needs done. Has anyone

had luck trying to increase there energy or options I may have at thia point.

Any advise will help.. Thanks so much.

>

> dx: June 29, 2009

> Started gleevac July 15, 2009

>

[Guest guest]

Wow, .  I know exactly how you feel; I was diagnosed in July 2004.  I

was working fulltime and had 4 busy busy teenagers, seperated at the time and

couldn't quite get wrapped around what was going on.  Gleevec was just released

on the market that month so I started treatment in July.  I had my family

tested for a match in the event that a BMT was considered.  The first few

months were heaven because I finally knew what was wrong with me.  After having

millions of platelets removed from my terribly sluggish body I began to come

alive but then after months of being on Gleevec I struggled with a whole new set

of side effects; tired, rashes, very toxic feeling. 

 

I still was working fulltime, mothering etc but by this time my husband and I

got back together which really helped me with not feeling so alone but believe 

it or not it increased my load.  My family did not quite understand what I was

fighting (being tired ALL the time) and because I was working, and doing

everything like before they thought I was okay.  Granted I was alive but not

okay.  It took time but eventually I have helped them understand I need their

help.  I recommend for you, with little ones, to enlist your husband to help as

much as possible with the household chores, rest when you can and believe it or

not exercise as much as possible.  I found that excercise, staying busy and

eating well kept me on my feet but when 9:00 rolls around nobody and I mean

nobody better be in between me and my BED ....    Hold strong, pray and keep

your smile and a good dose of humor around for the tough times because it does

get better

 

 

From: <rnmichelle80@...>

Subject: [ ] Working?

Date: Friday, March 19, 2010, 6:45 PM

 

I was diagnosed with CML in June 2009. I work full-time and have a great family.

My husband Bill, has been very helpful with all the change. I also have a 4 year

old and a 1 year old who don;t understand much. Just wondering if anyone is

having the same problem I am. I am very tired all the time and jsut feel like I

want to stay in bed all day. Problem, I work full-time Moday thur Friday from

8:30 to 5. Come home cook dinner, bath the kids and get them to bed. Then the

clean up, laundry and anything else that needs done. Has anyone had luck trying

to increase there energy or options I may have at thia point. Any advise will

help.. Thanks so much.

dx: June 29, 2009

Started gleevac July 15, 2009

[Guest guest]

Thank you for your words of wisdom!

Sent from my Verizon Wireless BlackBerry

[ ] Working?

Date: Friday, March 19, 2010, 6:45 PM

 

I was diagnosed with CML in June 2009. I work full-time and have a great family.

My husband Bill, has been very helpful with all the change. I also have a 4 year

old and a 1 year old who don;t understand much. Just wondering if anyone is

having the same problem I am. I am very tired all the time and jsut feel like I

want to stay in bed all day. Problem, I work full-time Moday thur Friday from

8:30 to 5. Come home cook dinner, bath the kids and get them to bed. Then the

clean up, laundry and anything else that needs done. Has anyone had luck trying

to increase there energy or options I may have at thia point. Any advise will

help.. Thanks so much.

dx: June 29, 2009

Started gleevac July 15, 2009

[Guest guest]

Hi --

I am in the same boat that you are--I have two boys, 11 and 15--I was diagnosed

in 2007. The boys are big enough to help out, and I usually get everybody to

pitch in and help--the boys fold their own laundry and put it away. My husband

is also absolutely wonderful--he does dinners and laundry and housecleaning when

I am too worn out. I also work full-time. My husband works full time at home,

so he is there to do the things for our boys that I can't while I am in the

office. When I get tired, I just take a rest--it's amazing what an hour-long

nap will do for you in the evening. I have also been working out and doing some

weights and treadmill x 30 minutes per day at least 5 days per week and that has

really helped boost my energy levels. I also take a good multivitamin--that is

VERY important--I can't stress enough how important it is!! I take GNC Ultra

Mega Women's formula. It is a bit expensive, but energy is one of the main

reasons I take it. It is a fabulous formula and they have a deal where you buy

one bottle and get the second bottle half off. It is high potency and it REALLY

works.

Good luck--keep us posted with how you're doing!

Vicki

>

> I was diagnosed with CML in June 2009. I work full-time and have a great

family. My husband Bill, has been very helpful with all the change. I also

have a 4 year old and a 1 year old who don;t understand much. Just wondering if

anyone is having the same problem I am. I am very tired all the time and jsut

feel like I want to stay in bed all day. Problem, I work full-time Moday thur

Friday from 8:30 to 5. Come home cook dinner, bath the kids and get them to

bed. Then the clean up, laundry and anything else that needs done. Has anyone

had luck trying to increase there energy or options I may have at thia point.

Any advise will help.. Thanks so much.

>

> dx: June 29, 2009

> Started gleevac July 15, 2009

>

[Guest guest]

Good Morning ,

I am sure you are not going to like my answer.

Just lay down!  Your body is adjusting to a huge change.  You must rest.

I am a mom, my kids are older, work full time and live on a farm.

Just lay down.  In the long run it will be the best thing for you.

I will tell you that, at least for me, the fatigue does go away for longer and

longer periods of time.  Sometimes, like yesterday, I still just need the

rest!!

Blessings,

Jo-Dee

From: <rnmichelle80@...>

Subject: [ ] Working?

Date: Saturday, March 20, 2010, 1:45 AM

 

I was diagnosed with CML in June 2009. I work full-time and have a great

family. My husband Bill, has been very helpful with all the change. I also

have a 4 year old and a 1 year old who don;t understand much. Just wondering if

anyone is having the same problem I am. I am very tired all the time and jsut

feel like I want to stay in bed all day. Problem, I work full-time Moday thur

Friday from 8:30 to 5. Come home cook dinner, bath the kids and get them to

bed. Then the clean up, laundry and anything else that needs done. Has anyone

had luck trying to increase there energy or options I may have at thia point.

Any advise will help.. Thanks so much.

dx: June 29, 2009

Started gleevac July 15, 2009

[Guest guest]

Jo- Dee

I agree with you...sometimes you need to put yourself first and get the rest you

need..my kids are 19 and 15 so they are pretty self-sufficient...and I have the

most wonderful husband who has stepped up and taken on most the chores since I

was diagnosed last Nov. - I am on 800mg/day of Gleevec and sometimes I just need

to rest...I do not work outside the home, but up until Nov. my husband and kids

did nothing here...it was my job as the stay-at-home Mom to do the laundry and

cleaning and cooking and gardening/yardwork etc..all my husband did was take the

garbage out on Thursday nights...they all had it pretty good, but then the

fatigue came along with the Gleevec and that stopped...the Mom-guilt kicked in

until one day I just said to them...CML is my job now - I have to do what's best

for me now...and if that means letting the chores go and getting some rest than

that's what I do...they all pitch in now and help with getting the chores done,

and if my house isn't the cleanest on the block anymore I'm ok with that...I'm

taking care of myself, getting the rest I need, eating right and getting my

exercise...my husband jokes now and says that if someone visits and complains

that the house isn't tidy, he'll tell them that it looks real good from the curb

and they should go out there and check it out!

Cheryl

>

> From: <rnmichelle80@...>

> Subject: [ ] Working?

>

> Date: Saturday, March 20, 2010, 1:45 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> I was diagnosed with CML in June 2009. I work full-time and have a

great family. My husband Bill, has been very helpful with all the change. I

also have a 4 year old and a 1 year old who don;t understand much. Just

wondering if anyone is having the same problem I am. I am very tired all the

time and jsut feel like I want to stay in bed all day. Problem, I work

full-time Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the

kids and get them to bed. Then the clean up, laundry and anything else that

needs done. Has anyone had luck trying to increase there energy or options I

may have at thia point. Any advise will help.. Thanks so much.

>

>

>

> dx: June 29, 2009

>

> Started gleevac July 15, 2009

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I was diagnosed in July 2009 and struggled with a lot of fatigue as well.

Though I am fortunate enough that my wife is a stay at home mother, we have

a 2 year old and a 6 month old, so I can to some degree feel your pain. A

few days ago I was switched over to Sprycel and the difference so far has

been very noticeable.

[ ] Working?

I was diagnosed with CML in June 2009. I work full-time and have a great

family. My husband Bill, has been very helpful with all the change. I also

have a 4 year old and a 1 year old who don;t understand much. Just wondering

if anyone is having the same problem I am. I am very tired all the time and

jsut feel like I want to stay in bed all day. Problem, I work full-time

Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the kids and

get them to bed. Then the clean up, laundry and anything else that needs

done. Has anyone had luck trying to increase there energy or options I may

have at thia point. Any advise will help.. Thanks so much.

dx: June 29, 2009

Started gleevac July 15, 2009

[Guest guest]

Hi Neal.

I am glad to hear that the change to Sprycel has made a difference in youf

fatigue. Congratulations! Please continue to let us know your progress.

Sandi

>

> I was diagnosed in July 2009 and struggled with a lot of fatigue as well.

> Though I am fortunate enough that my wife is a stay at home mother, we have

> a 2 year old and a 6 month old, so I can to some degree feel your pain. A

> few days ago I was switched over to Sprycel and the difference so far has

> been very noticeable.

>

>

>

>

>

>

>

> [ ] Working?

>

>

>

>

>

> I was diagnosed with CML in June 2009. I work full-time and have a great

> family. My husband Bill, has been very helpful with all the change. I also

> have a 4 year old and a 1 year old who don;t understand much. Just wondering

> if anyone is having the same problem I am. I am very tired all the time and

> jsut feel like I want to stay in bed all day. Problem, I work full-time

> Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the kids and

> get them to bed. Then the clean up, laundry and anything else that needs

> done. Has anyone had luck trying to increase there energy or options I may

> have at thia point. Any advise will help.. Thanks so much.

>

> dx: June 29, 2009

> Started gleevac July 15, 2009

>

>

>

>

>

>

[Guest guest]

Michele I have the same problem of being tired all the time. I am hardly keeping

my full time professional job which require a lot of energy. I have been on

gleevec for the last 7 years. Talk your Dr and check your options My advise do

not reduce dosage.

T

Sent from my Verizon Wireless BlackBerry

[ ] Working?

>

>

>

>

>

> I was diagnosed with CML in June 2009. I work full-time and have a great

> family. My husband Bill, has been very helpful with all the change. I also

> have a 4 year old and a 1 year old who don;t understand much. Just wondering

> if anyone is having the same problem I am. I am very tired all the time and

> jsut feel like I want to stay in bed all day. Problem, I work full-time

> Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the kids and

> get them to bed. Then the clean up, laundry and anything else that needs

> done. Has anyone had luck trying to increase there energy or options I may

> have at thia point. Any advise will help.. Thanks so much.

>

> dx: June 29, 2009

> Started gleevac July 15, 2009

>

>

>

>

>

>

[Guest guest]

Thanks for the advice. Working full time is very demanding and then to come

home to another full time job, 2 kids and a husband. I go to the doctors and

will def have a conversation about my options at this point. Again thanks to

all for the great advice.

Sent from my Verizon Wireless BlackBerry

[ ] Working?

>

>

>

>

>

> I was diagnosed with CML in June 2009. I work full-time and have a great

> family. My husband Bill, has been very helpful with all the change. I also

> have a 4 year old and a 1 year old who don;t understand much. Just wondering

> if anyone is having the same problem I am. I am very tired all the time and

> jsut feel like I want to stay in bed all day. Problem, I work full-time

> Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the kids and

> get them to bed. Then the clean up, laundry and anything else that needs

> done. Has anyone had luck trying to increase there energy or options I may

> have at thia point. Any advise will help.. Thanks so much.

>

> dx: June 29, 2009

> Started gleevac July 15, 2009

>

>

>

>

>

>

[Guest guest]

Great advice Jo-Dee. I also work full time, have older children, and live on a

farm. Two years ago I handed over the bookkeeping to my husband and he is doing

a better job than I did!! Now he KNOWS where the money goes. haha.

It wasn't easy at first, but I really didn't have a choice. At the end of the

day, what mattered was my health and that was my priority. Work, eat, rest,

sleep. When my children were in sports, I slept in my van whenever I could. Or

just stayed home and had them tell me all about it. Our new normal.

As moms we think we have to do it all, but when we're diagnosed with a life

threatening illness, we want to be around to continue those responsibilities for

a long time so giving them up for awhile doesn't matter.

Get lots of rest - God Bless,

Jackie S.

________________________________

From: Jo-Dee McKibben <tuskarawaz64@...>

Sent: Mon, March 22, 2010 8:46:35 AM

Subject: Re: [ ] Working?

Good Morning ,

I am sure you are not going to like my answer.

Just lay down! Your body is adjusting to a huge change. You must rest.

I am a mom, my kids are older, work full time and live on a farm.

Just lay down. In the long run it will be the best thing for you.

I will tell you that, at least for me, the fatigue does go away for longer and

longer periods of time. Sometimes, like yesterday, I still just need the rest!!

Blessings,

Jo-Dee

From: <rnmichelle80>

Subject: [ ] Working?

groups (DOT) com

Date: Saturday, March 20, 2010, 1:45 AM

I was diagnosed with CML in June 2009. I work full-time and have a great

family. My husband Bill, has been very helpful with all the change. I also

have a 4 year old and a 1 year old who don;t understand much. Just wondering if

anyone is having the same problem I am. I am very tired all the time and jsut

feel like I want to stay in bed all day. Problem, I work full-time Moday thur

Friday from 8:30 to 5. Come home cook dinner, bath the kids and get them to

bed. Then the clean up, laundry and anything else that needs done. Has anyone

had luck trying to increase there energy or options I may have at thia point.

Any advise will help.. Thanks so much.

dx: June 29, 2009

Started gleevac July 15, 2009

[Guest guest]

Yes ,

Don't fight it. Get as much rest as you can.

Sharon

_____

From: [mailto: ] On Behalf Of jackie

schneider

Sent: Thursday, March 25, 2010 7:21 PM

Subject: Re: [ ] Working?

Great advice Jo-Dee. I also work full time, have older children, and live on

a farm. Two years ago I handed over the bookkeeping to my husband and he is

doing a better job than I did!! Now he KNOWS where the money goes. haha.

It wasn't easy at first, but I really didn't have a choice. At the end of

the day, what mattered was my health and that was my priority. Work, eat,

rest, sleep. When my children were in sports, I slept in my van whenever I

could. Or just stayed home and had them tell me all about it. Our new

normal.

As moms we think we have to do it all, but when we're diagnosed with a life

threatening illness, we want to be around to continue those responsibilities

for a long time so giving them up for awhile doesn't matter.

Get lots of rest - God Bless,

Jackie S.

________________________________

From: Jo-Dee McKibben <tuskarawaz64@ <mailto:tuskarawaz64%40>

>

groups (DOT) <mailto:%40> com

Sent: Mon, March 22, 2010 8:46:35 AM

Subject: Re: [ ] Working?

Good Morning ,

I am sure you are not going to like my answer.

Just lay down! Your body is adjusting to a huge change. You must rest.

I am a mom, my kids are older, work full time and live on a farm.

Just lay down. In the long run it will be the best thing for you.

I will tell you that, at least for me, the fatigue does go away for longer

and longer periods of time. Sometimes, like yesterday, I still just need the

rest!!

Blessings,

Jo-Dee

From: <rnmichelle80>

Subject: [ ] Working?

groups (DOT) com

Date: Saturday, March 20, 2010, 1:45 AM

I was diagnosed with CML in June 2009. I work full-time and have a great

family. My husband Bill, has been very helpful with all the change. I also

have a 4 year old and a 1 year old who don;t understand much. Just wondering

if anyone is having the same problem I am. I am very tired all the time and

jsut feel like I want to stay in bed all day. Problem, I work full-time

Moday thur Friday from 8:30 to 5. Come home cook dinner, bath the kids and

get them to bed. Then the clean up, laundry and anything else that needs

done. Has anyone had luck trying to increase there energy or options I may

have at thia point. Any advise will help.. Thanks so much.

dx: June 29, 2009

Started gleevac July 15, 2009