RE: Tammy are you tired

[Guest guest]

I SO did not mean to sound like I was whining about my life. I know that, as

far as I know, I am responding to Gleevec and I have very few side effects.

I am lucky. I guess I was wondering from the people that read posts, but are

doing well, if they had the same issue - I feel very tired. Did I catch a

cold? Next time I plan a day out, should I include a wheelchair? or not plan

a whole day? Which is crazy, because everyone knows that if you are

traveling somewhere you want to get the most out of all the hours in the

day. Or, if this is more likely a one time, I'm catching a cold, walking

all day wore me out, bad timing type of tired...

Thanks,

Tammy

_____

From: [mailto: ] On Behalf Of Lottie

Duthu

Sent: Sunday, March 16, 2008 3:54 AM

CML

Subject: [ ] Tammy are you tired

Dear Tammy,

I've always been told to take a power nap when you need one. Your body is

telling you something. I do, sometimes sleepness overcomes me while I am

typing. Right now sleep is evading me because I got 2 Kenalog injections in

my knees yesterday for the pain. The doctor also found fluid in my knees. I

have an appointment to see an orthopedist to see if I am a candidate for

replacing synovial fluid in my knees. It usually helps all the other pain I

have. I also have fibromyalgia, one of the arthritic diseases that attacks

the muscles. I read an article today that said if you don't have at least 7

hrs. of sleep a day you will end up with heart trouble and diabetes. Well

boo hoo. I had two doctors bet me that I had diabetes and I don't. I have

charcot feet where the bones break easily, but my bones in my body are very

strong. I have bones in my feet that are not even attached. From being on

Inteferon in the old days, I now have neuropathy and that can be painful. It

is slowly moving up to my knees.. I am allergic or should say I have side

effects with most medicines. Pain medicine is the worst thing for them to

try to prescribe for me. I take a child's dose and if I can cut it, I do,

but can't do that with a capsule.

I have to congratulate anyone who still works with CML. I could not do it, I

have given up all of my duties with my volunteer work. I will start working

with LLS and First Connection and want to work in the office where I can use

my skills. Keep on keeping on.

May God's favor rest upon you,

Lottie

[Guest guest]

Hi Tammy,

I don't think you sounded like you were whining at all.

As for the fatigue, I find it much like the other side effects in the

sense that they all seem to come and go without warning or

prediction.

I've had days where I've been on the move from morning til night and

done fine with it and other days where just getting off the couch to

make supper wore me out.

Interestingly, I've noticed that more sleep I get at night, the more

tired I am the next day which of course makes no sense at all.

Tracey

>

> I SO did not mean to sound like I was whining about my life. I know

that, as

> far as I know, I am responding to Gleevec and I have very few side

effects.

> I am lucky. I guess I was wondering from the people that read

posts, but are

> doing well, if they had the same issue - I feel very tired. Did I

catch a

> cold? Next time I plan a day out, should I include a wheelchair? or

not plan

> a whole day? Which is crazy, because everyone knows that if you are

> traveling somewhere you want to get the most out of all the hours

in the

> day. Or, if this is more likely a one time, I'm catching a cold,

walking

> all day wore me out, bad timing type of tired...

> Thanks,

> Tammy

>

> _____

>

> From: [mailto: ] On Behalf

Of Lottie

> Duthu

> Sent: Sunday, March 16, 2008 3:54 AM

> CML

> Subject: [ ] Tammy are you tired

>

>

>

> Dear Tammy,

> I've always been told to take a power nap when you need one. Your

body is

> telling you something. I do, sometimes sleepness overcomes me while

I am

> typing. Right now sleep is evading me because I got 2 Kenalog

injections in

> my knees yesterday for the pain. The doctor also found fluid in my

knees. I

> have an appointment to see an orthopedist to see if I am a

candidate for

> replacing synovial fluid in my knees. It usually helps all the

other pain I

> have. I also have fibromyalgia, one of the arthritic diseases that

attacks

> the muscles. I read an article today that said if you don't have at

least 7

> hrs. of sleep a day you will end up with heart trouble and

diabetes. Well

> boo hoo. I had two doctors bet me that I had diabetes and I don't.

I have

> charcot feet where the bones break easily, but my bones in my body

are very

> strong. I have bones in my feet that are not even attached. From

being on

> Inteferon in the old days, I now have neuropathy and that can be

painful. It

> is slowly moving up to my knees.. I am allergic or should say I

have side

> effects with most medicines. Pain medicine is the worst thing for

them to

> try to prescribe for me. I take a child's dose and if I can cut it,

I do,

> but can't do that with a capsule.

>

> I have to congratulate anyone who still works with CML. I could not

do it, I

> have given up all of my duties with my volunteer work. I will start

working

> with LLS and First Connection and want to work in the office where

I can use

> my skills. Keep on keeping on.

> May God's favor rest upon you,

> Lottie

>

>

[Guest guest]

Dear Tammy,

I didn't think you were whining. I can very much relate to your

fatigue issue. Not too long ago, I used to thrive on about 5 or 6

hours sleep a day. I worked long hours, was the first one up in the

morning and the last one to bed. I'm 44 (dx in 2005) and my sleep

requirements have probably more than doubled in the past couple of

years since dx. The fatigue -- along with memory loss and

concentration/focus problems -- is one of the several reasons I've

been unable to work for a while. I admire your ability to keep on

working.

Warm regards.

>

> I SO did not mean to sound like I was whining about my life. I know

that, as

> far as I know, I am responding to Gleevec and I have very few side

effects.

> I am lucky. I guess I was wondering from the people that read

posts, but are

> doing well, if they had the same issue - I feel very tired. Did I

catch a

> cold? Next time I plan a day out, should I include a wheelchair? or

not plan

> a whole day? Which is crazy, because everyone knows that if you are

> traveling somewhere you want to get the most out of all the hours

in the

> day. Or, if this is more likely a one time, I'm catching a cold,

walking

> all day wore me out, bad timing type of tired...

> Thanks,

> Tammy

>

> _____

>

> From: [mailto: ] On Behalf

Of Lottie

> Duthu

> Sent: Sunday, March 16, 2008 3:54 AM

> CML

> Subject: [ ] Tammy are you tired

>

>

>

> Dear Tammy,

> I've always been told to take a power nap when you need one. Your

body is

> telling you something. I do, sometimes sleepness overcomes me while

I am

> typing. Right now sleep is evading me because I got 2 Kenalog

injections in

> my knees yesterday for the pain. The doctor also found fluid in my

knees. I

> have an appointment to see an orthopedist to see if I am a

candidate for

> replacing synovial fluid in my knees. It usually helps all the

other pain I

> have. I also have fibromyalgia, one of the arthritic diseases that

attacks

> the muscles. I read an article today that said if you don't have at

least 7

> hrs. of sleep a day you will end up with heart trouble and

diabetes. Well

> boo hoo. I had two doctors bet me that I had diabetes and I don't.

I have

> charcot feet where the bones break easily, but my bones in my body

are very

> strong. I have bones in my feet that are not even attached. From

being on

> Inteferon in the old days, I now have neuropathy and that can be

painful. It

> is slowly moving up to my knees.. I am allergic or should say I

have side

> effects with most medicines. Pain medicine is the worst thing for

them to

> try to prescribe for me. I take a child's dose and if I can cut it,

I do,

> but can't do that with a capsule.

>

> I have to congratulate anyone who still works with CML. I could not

do it, I

> have given up all of my duties with my volunteer work. I will start

working

> with LLS and First Connection and want to work in the office where

I can use

> my skills. Keep on keeping on.

> May God's favor rest upon you,

> Lottie

>

>

[Guest guest]

Lottie,

You sound like a trooper! I have neuropathy in my feet as well, and

sometimes it seems worse than CML. I am working full-time but it is

a struggle some days. The Charcot foot is something I am worried

about but I don't think I have it yet. My feet are burning and feel

like somebody is using a blowtorch on the bottoms of them when I try

to go to sleep at night! The Gleevec and CML sometimes, truly, seem

like the secondary problems...although the fatigue and sweats do

really do me in at times. I agree about the power naps--now if we

could just get them built into our workdays and society that would

be wonderful.

Hugs,

Vicki

>

> Dear Tammy,

> I've always been told to take a power nap when you need one.

Your body is telling you something. I do, sometimes sleepness

overcomes me while I am typing. Right now sleep is evading me

because I got 2 Kenalog injections in my knees yesterday for the

pain. The doctor also found fluid in my knees. I have an

appointment to see an orthopedist to see if I am a candidate for

replacing synovial fluid in my knees. It usually helps all the

other pain I have. I also have fibromyalgia, one of the arthritic

diseases that attacks the muscles. I read an article today that

said if you don't have at least 7 hrs. of sleep a day you will end

up with heart trouble and diabetes. Well boo hoo. I had two

doctors bet me that I had diabetes and I don't. I have charcot feet

where the bones break easily, but my bones in my body are very

strong. I have bones in my feet that are not even attached. From

being on Inteferon in the old days, I now have neuropathy and that

can be painful. It is slowly moving up to my knees. I am allergic

or should say I have side effects with most medicines. Pain

medicine is the worst thing for them to try to prescribe for me. I

take a child's dose and if I can cut it, I do, but can't do that

with a capsule.

>

> I have to congratulate anyone who still works with CML. I

could not do it, I have given up all of my duties with my volunteer

work. I will start working with LLS and First Connection and want

to work in the office where I can use my skills. Keep on keeping on.

> May God's favor rest upon you,

> Lottie

>

>

[Guest guest]

Tammy, you DO feel tired! It is insidious and not something people

can see--i.e. you don't LOOK sick, but you truly need to start being

selective about what you do. You sometimes will find yourself

saying, " oh you go ahead, I think I will stay home and nap this

afternoon instead. " You need to practice saying that phrase! It is

great that you are having few side-effects, but sometimes they are

insidious and subtle too--and if you can ignore them that is great.

I have skin problems (fragile skin) and sweating and fatigue, plus a

tummyache for 4 hours after I take my Gleevec with severe diarrhea.

If I don't eat well before I take it, I can get vomiting, too, but

not often. Muscle and bone aching some, cramping muscles and

electrolyte disturbances, eye problems--blurred vision and excess

tears...let's see, anything else? There is nothing that

screams " Gleevec " but there are many things that I realize I did not

have before I started taking it. The eye puffiness and hand and

foot puffiness are probably the most outwardly noticeable.

Good luck! Take a nap! It gets better.

Vicki

>

> I SO did not mean to sound like I was whining about my life. I

know that, as

> far as I know, I am responding to Gleevec and I have very few side

effects.

> I am lucky. I guess I was wondering from the people that read

posts, but are

> doing well, if they had the same issue - I feel very tired. Did I

catch a

> cold? Next time I plan a day out, should I include a wheelchair?

or not plan

> a whole day? Which is crazy, because everyone knows that if you are

> traveling somewhere you want to get the most out of all the hours

in the

> day. Or, if this is more likely a one time, I'm catching a

cold, walking

> all day wore me out, bad timing type of tired...

> Thanks,

> Tammy

>

> _____

>

> From: [mailto: ] On Behalf

Of Lottie

> Duthu

> Sent: Sunday, March 16, 2008 3:54 AM

> CML

> Subject: [ ] Tammy are you tired

>

>

>

> Dear Tammy,

> I've always been told to take a power nap when you need one. Your

body is

> telling you something. I do, sometimes sleepness overcomes me

while I am

> typing. Right now sleep is evading me because I got 2 Kenalog

injections in

> my knees yesterday for the pain. The doctor also found fluid in my

knees. I

> have an appointment to see an orthopedist to see if I am a

candidate for

> replacing synovial fluid in my knees. It usually helps all the

other pain I

> have. I also have fibromyalgia, one of the arthritic diseases that

attacks

> the muscles. I read an article today that said if you don't have

at least 7

> hrs. of sleep a day you will end up with heart trouble and

diabetes. Well

> boo hoo. I had two doctors bet me that I had diabetes and I don't.

I have

> charcot feet where the bones break easily, but my bones in my body

are very

> strong. I have bones in my feet that are not even attached. From

being on

> Inteferon in the old days, I now have neuropathy and that can be

painful. It

> is slowly moving up to my knees.. I am allergic or should say I

have side

> effects with most medicines. Pain medicine is the worst thing for

them to

> try to prescribe for me. I take a child's dose and if I can cut

it, I do,

> but can't do that with a capsule.

>

> I have to congratulate anyone who still works with CML. I could

not do it, I

> have given up all of my duties with my volunteer work. I will

start working

> with LLS and First Connection and want to work in the office where

I can use

> my skills. Keep on keeping on.

> May God's favor rest upon you,

> Lottie

>

>

[Guest guest]

Vicki,

Thank you. As much as I understand that I may actaully have to

slow down... hee-hee... there is the part of me that says " GO! GO!

GO! " . I have been taking it easy the past few days. Which is also

stressing me out because I own my own business, and it is work that I

(and I alone) can do! Balance - I have to find it.

I know I am lucky with the lack of side effects... puffy eyes seem to

be the most noticeable. I have a little muscle/joint pain, but

nothing that keeps me up or not doing things. I am going to blame

Gleevec for pushing my teeth over the edge. :)They weren't awesome to

begin with.. but since dx... they are cracking! I wonder if the tooth

fairy wants cracked adult teeth? Or how much they are worth? LOL

I am so thankful for this group too. My hubby (and family) are doing

a good job trying to understand... but it is hard when you really

don't know. So, THANKS!

One more thing - my youngest sister in NOT a match. I really

hadn't thought about how I'd feel if they told me my sisters were or

were not a match. But, I cried. I know I don't have to have a

transplant, that the meds will hopefully carry me through, but I

think the lack of a back-up plan was disturbing and sad.

Tammy

> >

> > I SO did not mean to sound like I was whining about my life. I

> know that, as

> > far as I know, I am responding to Gleevec and I have very few

side

> effects.

> > I am lucky. I guess I was wondering from the people that read

> posts, but are

> > doing well, if they had the same issue - I feel very tired. Did I

> catch a

> > cold? Next time I plan a day out, should I include a wheelchair?

> or not plan

> > a whole day? Which is crazy, because everyone knows that if you

are

> > traveling somewhere you want to get the most out of all the hours

> in the

> > day. Or, if this is more likely a one time, I'm catching a

> cold, walking

> > all day wore me out, bad timing type of tired...

> > Thanks,

> > Tammy

> >

> > _____

> >

> > From: [mailto: ] On

Behalf

> Of Lottie

> > Duthu

> > Sent: Sunday, March 16, 2008 3:54 AM

> > CML

> > Subject: [ ] Tammy are you tired

> >

> >

> >

> > Dear Tammy,

> > I've always been told to take a power nap when you need one. Your

> body is

> > telling you something. I do, sometimes sleepness overcomes me

> while I am

> > typing. Right now sleep is evading me because I got 2 Kenalog

> injections in

> > my knees yesterday for the pain. The doctor also found fluid in

my

> knees. I

> > have an appointment to see an orthopedist to see if I am a

> candidate for

> > replacing synovial fluid in my knees. It usually helps all the

> other pain I

> > have. I also have fibromyalgia, one of the arthritic diseases

that

> attacks

> > the muscles. I read an article today that said if you don't have

> at least 7

> > hrs. of sleep a day you will end up with heart trouble and

> diabetes. Well

> > boo hoo. I had two doctors bet me that I had diabetes and I

don't.

> I have

> > charcot feet where the bones break easily, but my bones in my

body

> are very

> > strong. I have bones in my feet that are not even attached. From

> being on

> > Inteferon in the old days, I now have neuropathy and that can be

> painful. It

> > is slowly moving up to my knees.. I am allergic or should say I

> have side

> > effects with most medicines. Pain medicine is the worst thing for

> them to

> > try to prescribe for me. I take a child's dose and if I can cut

> it, I do,

> > but can't do that with a capsule.

> >

> > I have to congratulate anyone who still works with CML. I could

> not do it, I

> > have given up all of my duties with my volunteer work. I will

> start working

> > with LLS and First Connection and want to work in the office

where

> I can use

> > my skills. Keep on keeping on.

> > May God's favor rest upon you,

> > Lottie

> >

> >