hi

[Guest guest]

Hi Sheila. I am the list owner, and I am very happy that you have joined our

group. I'm sorry I didn't answer your first post sooner, but it seems my life

has been a little upside down these past few weeks and I am behind in answering

posts.

All of the rheumatic diseases are very misunderstood. When someone says they

have arthritis, most people aren't aware that there are over 100 different

types. Most people associate arthritis with osteoarthritis, the form that is

normal with aging. Most people don't know that children can be affected with

arthritis. We have several members here that were diagnosed in their teens or

earlier.

Anyone that wants to learn more and help educate others is helping everyone that

suffers with this disease. One of our most common complaint is " helpful "

friends that say take a few Advil and you'll be better, or get more exercise.

I don't have lupus, I have another inflammatory arthritis called psoriatic

arthritis. You may have heard of psoriasis, the skin disease. 5% of people

with psoriases will develop psoriatic arthritis. The bone erosion has already

claimed many joints. I've had both knees replaced, and could use a few more

replacements.

I admire you for wanting to learn more about this disease, and your help in

awareness and fundraising for Lupus. Feel free to ask any questions that you

want.

a

----- Original Message -----

From: Sheila Warner

Howied_4_me@...

Sent: Thursday, March 15, 2001 9:52 AM

Subject: [ ] HI

Good Morning,

If you are receiving this msg from me then it means

the listowner has either decided I could stay or has

not made a decision yet.

I'll be staying in the background...but if any of you

have any questions for me...please feel free to e-mail

me!

Sheila

howied_4_me@...

=====

***PLEASE Support the Dorough Lupus Foundation*** -

http://www.doroughlupusfoundation.org/ You can get an adorable bear with just a

$25.00 donation...check it out!!! HAVE

YOU ORDERED YOUR PURPLE HOWIE DLF SHIRT YET?? WHY NOT?? $20.00 AND A GREAT

CAUSE. ASK ME HOW TO GET YOURS!! OR VISIT THIS SITE:

http://biscuitman.homestead.com/shirt_picture.html

__________________________________________________

[Guest guest]

My son also had speech and lost it at about 2 1/2. I wouldn't be so quick to

say that, " he chooses not to speak " , as this pattern is typical of apraxic

children. (You obviously are not totally convinced that, " He chooses not to

speak " or you would not be at this sight.)

Get a diagnosis from an independent SLP and order some Proefa to get him

started on it right away. It helps regardless of the severity.

[Guest guest]

hi my son is 3 and has the same problem what i did is took him to a speech

therespist to get him tested and they come out to my home once a week. i

have seen a big inprovement with him talking. it is from the state and it is

free. check in to it and let me know what you think. here is my email add.

susanpooter4696@... or you can call me at 302-674-4713 my name is susan.

good luck.

[Guest guest]

Me Mom ,

I was part of that same club as , you were so quiet that I thought

perhaps the vomiting was too severe & you couldn't wait. Glad the reasons

that we didn't see you were good ones! Well, you got to do the things you

were waiting for, prom & your granddaughters birthday party & now you can

concentrate all you energy on yourself (well at least try). You ARE doing

the right thing at this time. This will " buy " you some time to review your

other options & other facilities. There just HAS to be other options out

there for you. All of our candles will be burning tomorrow for you & yours

(well mine has to go off & on because I have to do lab work & go to the

doctor), but you know none of us well rest easy until we see the post from

your family when they get a chance.......You are a brave lady & I am so lucky

to call you my friend.........

Hang in there kiddo, you are doing the right thing & we are all there for you

in spirit & mind.........That little bit of courage you are going to need

tomorrow will be coming from your family here on this board. We love

you.........

Gentle, tender, healing, get well quick, angel hugs,

Debs

[Guest guest]

Me Mom!

You were so quiet that I was worried that you could already be in the

hospital. Try not to worry about it. Nothing to do but hope for the best. I

really think that right now you have no other choice but the stent. Of

course, I'll be praying that everything tomorrow goes perfectly and that

they will take excellent care of you. I'm planning on lighting a candle for

you.

Yes, the kids and I are fine, thank you.

I hope the prom and birthday were fun and that you aren't too worn out.

Good luck tomorrow!

Love,

----- Original Message -----

From: " Ruf-Caimi " <ruf-caimi@...>

< >

Sent: Tuesday, April 24, 2001 12:03 PM

Subject: [ ] hi

> Hi ,

> I haven't been on there has been a lot going on here this past week. Just

> wanted to let you know I am still here. Tomorrow is the stent day, I hate

> thinking about it. But for now I think I am doing the right thing.

> Hope you and the kids are well.

> Me Mom

[Guest guest]

(Me-Mom)-

You can count on my thoughts, prayers, and candleburning

too!

[Guest guest]

Hi Janice & ,

Welcome to the group! Isn't it a relief to finally find others that can

relate to your story? It sure was for me. My son, Corey is 3 1/2 yrs old

and was diagnosed with speech apraxia about 1 year ago. He has been in ST

for about 1 year now and making great improvement but we still have a long

way to go. So, I love to hear stories of older children as well to see how

they progress and to see where we can be in a few years. Thanks for your

story and it sounds like responded well to therapy. That's wonderful

and keep us posted on future progress!

Pam, Mother of:

Corey 3 1/2-speech apraxia, 17 yrs, Casey 14 yrs, Caitlin & Connor 21

months.

Hi everyone, I am a new member and I am so relieved to finally find a

support group of people that know what my son and I have been going

through. My son and I have faced years of frustration and

misdiagnosis. He was nine years old before I could convice the dr.

and school that he had a problem that was more than age related

speech. This child could not say any sounds except D's. He could say

Dada but not Mama. He could not even say his own name until he was

nine years old. I was told all of the stupid things like, make him

talk, you are spoiling him, he is MR. etc. I'm sure many of you have

been there. I finally got the name of a clinic in Dallas that did a

wonderful evaluation on him and they diagnosed apraxia. I had never

heard of it and I had to educate the dr. and schools on it. I think

he is the only one in the school. We did finally get proper speech

therapy and I found someone who is certified to teach the ish

rites dyslexia program. She modified her program and worked with him

for 3 years. It worked for him. Today he is 13 years old going into

the 8th grade and makes A's in school. Something in his brain started

to work. Everything he does is difficult and he must study very hard.

All activites take him longer to do than most kids. His speech may

never be perfect but finally the teachers say they can understand

about 75% of his words. I can see that there is hope at the end of

the rainbow for this little boy. I would be interested in discussing

the progress of other older children. I am also wanting to try the

Proefa on him, has anyone used it on older childern? What dosage and

how did the kids do on it? Are your kids small in size and " floppy " ?

Once again I want to state what a relief it is to finally find a

support group. Janice and (13 years old and

can talk!)

[Guest guest]

Hello Janice,  it is so good to hear from another  parent of an older boy.  My son just turned 15 years old.  Once again I am grateful to hear from you.  I understand your past experiences.  My son however is not as successful in school as yours.  He still can not read.  We face constant frustration.  I live in San Diego.  Where do you live?

It would be wonderful to talk.  Lane

>From: jithaca@... >Reply- > >Subject: [ ] Hi >Date: Wed, 30 May 2001 17:48:43 -0000 > >Hi everyone, I am a new member and I am so relieved to finally find a >support group of people that know what my son and I have been going >through. My son and I have faced years of frustration and >misdiagnosis. He was nine years old before I could convice the dr. >and school that he had a problem that was more than age related >speech. This child could not say any sounds except D's. He could say >Dada but not Mama. He could not even say his own name until he was >nine years old. I was told all of the stupid things like, make him >talk, you are spoiling him, he is MR. etc. I'm sure many of you have >been there. I finally got the name of a clinic in Dallas that did a >wonderful evaluation on him and they diagnosed apraxia. I had never >heard of it and I had to educate the dr. and schools on it. I think >he is the only one in the school. We did finally get proper speech >therapy and I found someone who is certified to teach the ish >rites dyslexia program. She modified her program and worked with him >for 3 years. It worked for him. Today he is 13 years old going into >the 8th grade and makes A's in school. Something in his brain started >to work. Everything he does is difficult and he must study very hard. >All activites take him longer to do than most kids. His speech may >never be perfect but finally the teachers say they can understand >about 75% of his words. I can see that there is hope at the end of >the rainbow for this little boy. I would be interested in discussing >the progress of other older children. I am also wanting to try the >Proefa on him, has anyone used it on older childern? What dosage and >how did the kids do on it? Are your kids small in size and "floppy"? >Once again I want to state what a relief it is to finally find a >support group. Janice and (13 years old and >can talk!) > > Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

comments below

-----Original Message-----From: gammavega@... [mailto:gammavega@...]Sent: Tuesday, May 04, 2004 8:35 PM Subject: [ ] Hi

Hi,I read the article in the Washington Post but had seen the website prior to publication and have read a good deal about the group. The objective seems to be less caloric intake my questions are as comments / questions are as follows:1. Does this not mean one cannot eat out? One does not know how food is prepared outside the home and what may seem like fewer calories let's say broccoli with brown rice can be a great many calories if it is with doused in garilic sauce for example. (Just an example no nutritionist am I.)[john roberts] Sure you can eat out but most will find it easier to manage calories and nutrition by preparing our own meals. Very expensive restaurants may actually let you have it your way, but most will be a struggle. The benefits of CRON are in the average so occasional feasts are not a problem... daily feasts are. 2. If one wants a bagel in the morning it could be 300 calories but if it is bigger smaller than normal there is no way of knowing how many calories it actually is.[john roberts] It's all relative. For many adlib eaters a bagel is more nutritious than a jelly donut, but not exactly the top of the mountain in nutrition vs.. calories. Personally I used to eat bagels, then trimmed back to one a day. Later in my process of incremental diet improvement I actually started cooking my own bagels to get better control over ingredients. That was fine for a while but I eventually moved away from eating much grain. Run your personal numbers in a diet planner and if you can meet your goals including a bagel do it. There are no good or bad foods per se, but what you eat in total needs to add up to full nutrition while keeping calories low. There are of course secondary issues like glycemic index of carbs, and different types of fats but you can't achieve perfection with your first steps. You have the rest of your life to improve your diet, incremental changes are easier to live with. This isn't a short term program. 3. Calories delineated on a canned good for example may or may not be the true calorie count as noted.[john roberts] There is much discussion over accuracy of calories listed, and our bodies ability to efficiently utilize. These metrics are not perfect but as good starting point as any. Over time your bathroom scale will provide additional feedback. 4. What about portion size? Different sized portions obviously have different caloric counts.[john roberts] Yes portion control is a very powerful tool for reducing caloric intake. I personally prepare meals in advance, freezing multiple servings for later reheating and consumption. Since I know how much I put into the pot, it's straightforward to divide by 6 or 7 to calculate nutrition per serving Just seems to me that this restricted regimen is best for those who are vegetarians who prepare food at home. I know that is not necessarily the case but it would favor those on this program.[john roberts]

I have heard of some meal preparation firms in large cities that offer CRON compatible meals but my recollection was that they were pretty expensive. I agree with your assessment that self preparation of food is key to total control. However by cooking larger amounts and freezing, the daily time burden is not that bad. Vegetarian eating in naturally pretty low calorie and can provide good nutrition with careful food selection, maybe some supplementation. I personally prefer to eat real food vs.. supplementing whenever possible. Still learning....[john roberts] Yes, aren't we all...? Welcome and don't be intimidated. Just try to eat a little better and when appropriate a little less. Stay young a little longer...Comments?

________________________________________________________

This email has been scanned by Internet Pathway's Email

Gateway scanning system for potentially harmful content,

such as viruses or spam. Nothing out of the ordinary was

detected in this email. For more information, call

601-776-3355 or email support@...

________________________________________________________

[Guest guest]

i agree with all of 's comments but would like to add that canned goods

are usually laden with salt and most of us avoid them. Fresh or frozen

vegetables are healthier and preferable to canned.

If you haven't already read Dr W's " Beyond the 120 Year Diet " I urge you to

do so. He discussus such issues as eating out, and occasional splurges.

on 5/4/2004 11:41 PM, john roberts at johnhrob@... wrote:

> comments below

> -----Original Message-----

> From: gammavega@... [mailto:gammavega@...]

> Sent: Tuesday, May 04, 2004 8:35 PM

>

> Subject: [ ] Hi

>

>

> Hi,

>

> I read the article in the Washington Post but had seen the website prior

> to publication and have read a good deal about the group. The objective

> seems to be less caloric intake my questions are as comments / questions are

> as follows:

>

> 1. Does this not mean one cannot eat out? One does not know how food is

> prepared outside the home and what may seem like fewer calories let's say

> broccoli with brown rice can be a great many calories if it is with doused

> in garilic sauce for example. (Just an example no nutritionist am I.)

> [john roberts] Sure you can eat out but most will find it easier to manage

> calories and nutrition by preparing our own meals. Very expensive

> restaurants may actually let you have it your way, but most will be a

> struggle. The benefits of CRON are in the average so occasional feasts are

> not a problem... daily feasts are.

>

> 2. If one wants a bagel in the morning it could be 300 calories but if it

> is bigger smaller than normal there is no way of knowing how many calories

> it actually is.

> [john roberts] It's all relative. For many adlib eaters a bagel is more

> nutritious than a jelly donut, but not exactly the top of the mountain in

> nutrition vs.. calories. Personally I used to eat bagels, then trimmed back

> to one a day. Later in my process of incremental diet improvement I actually

> started cooking my own bagels to get better control over ingredients. That

> was fine for a while but I eventually moved away from eating much grain. Run

> your personal numbers in a diet planner and if you can meet your goals

> including a bagel do it. There are no good or bad foods per se, but what you

> eat in total needs to add up to full nutrition while keeping calories low.

> There are of course secondary issues like glycemic index of carbs, and

> different types of fats but you can't achieve perfection with your first

> steps. You have the rest of your life to improve your diet, incremental

> changes are easier to live with. This isn't a short term program.

>

> 3. Calories delineated on a canned good for example may or may not be the

> true calorie count as noted.

> [john roberts] There is much discussion over accuracy of calories listed,

> and our bodies ability to efficiently utilize. These metrics are not perfect

> but as good starting point as any. Over time your bathroom scale will

> provide additional feedback.

>

> 4. What about portion size? Different sized portions obviously have

> different caloric counts.

> [john roberts] Yes portion control is a very powerful tool for reducing

> caloric intake. I personally prepare meals in advance, freezing multiple

> servings for later reheating and consumption. Since I know how much I put

> into the pot, it's straightforward to divide by 6 or 7 to calculate

> nutrition per serving

>

> Just seems to me that this restricted regimen is best for those who are

> vegetarians who prepare food at home. I know that is not necessarily the

> case but it would favor those on this program.

> [john roberts]

> I have heard of some meal preparation firms in large cities that offer

> CRON compatible meals but my recollection was that they were pretty

> expensive. I agree with your assessment that self preparation of food is key

> to total control. However by cooking larger amounts and freezing, the daily

> time burden is not that bad. Vegetarian eating in naturally pretty low

> calorie and can provide good nutrition with careful food selection, maybe

> some supplementation. I personally prefer to eat real food vs..

> supplementing whenever possible.

>

> Still learning....

> [john roberts] Yes, aren't we all...? Welcome and don't be intimidated.

> Just try to eat a little better and when appropriate a little less. Stay

> young a little longer...

>

> Comments?

>

>

>

[Guest guest]

> Hi,

>

> I read the article in the Washington Post but had seen the website

prior to

> publication and have read a good deal about the group.

I'm from the Post article.

The objective seems to

> be less caloric intake my questions are as comments / questions are

as

> follows:

>

> 1. Does this not mean one cannot eat out? One does not know how

food is

> prepared outside the home and what may seem like fewer calories

let's say

> broccoli with brown rice can be a great many calories if it is with

doused in garilic

> sauce for example. (Just an example no nutritionist am I.)

You can eat out - we do all the time. But as you become more food

quality conscious, you will find your restaurant preferences change.

We eat at restaurants we know well and ask how they prepare things.

There are several dishes that we know from each restaurant that

provide good nutrition. We eat at Thai, Chinese, Greek, and Lebanese

restautants. These restaurants all use olive or peanut oils. Most of

the foods we choose are not fried or little oil is used, and the

olive oil at Greek and Lebanese restaurants is often added

afterwards. Thai can be very healthy. I eat green papaya salad and a

seafood soup. I eat Chinese without the rice and pick a dish with

lots of vegetables. I keep the portions small and share a single

entree with 2 other people. I tend to eat Greek salads and seafood

dishes. Lebanese is grilled meats, with hummus, tomato and cucumber

salad, and tabouleh that is almost all parsley. If you find yourself

eating out on travel, eat at good restaurants, order fish and

vegetables. Skip the bread. Order the Chicken Caesar salad with the

dressing on the side. This is like the food I eat at home, so that's

what I want when I go out. Forget most fast food. No pizza. We make

an exception on Mexican for a special New Mexican restaurant. They

use only canola oil and make fresh pepper sauces.

>

> 2. If one wants a bagel in the morning it could be 300 calories

but if it is

> bigger smaller than normal there is no way of knowing how many

calories it

> actually is.

Get a good scale that measures at least to the gram. Measure

everything you eat at home until you get good at estimating. You will

develop this hidden skill. I was actually able to construct a salad

from the salad bar at work that weighed between .97 and 1.03 pounds

every single day just by estimating.

>

> 3. Calories delineated on a canned good for example may or may not

be the

> true calorie count as noted.

This is true of everything. Raw apples are not created equal. Assume

the law of large numbers - somethings will have more, somethings will

have less. Over time it will average out. Not much point in worrying

about this. I personally think it's important to eat a LOT of variety

for this reason. If you eat the same small set of foods over and

over, especially the same brand, your nutritional content may not be

what you expect.

>

> 4. What about portion size? Different sized portions obviously

have

> different caloric counts.

Again, measure things at home for a while. You will be able to

estimate.

>

> Just seems to me that this restricted regimen is best for those who

are

> vegetarians who prepare food at home. I know that is not

necessarily the case but

> it would favor those on this program.

I've been on CRON 4 years, eating a varied omnivorous diet, eating

out 3 or 4 times a week. My family more or less eats what I do,

though they add in more goodies. I eat 1100 kcals/day and have done

this pretty consistently the whole time. My weight dropped from 156

to 120 and it hasn't varied more than 2 pounds over 3 years. It can

be done. It's not that hard. Even people that love food, like I do,

can do it. It's so worth doing. My health is greatly improved and my

enjoyment of food is much greater. I have lots of energy and feel

happier.

>

> Still learning....

>

> Comments?

[Guest guest]

Hi ,

My name is Leanne from Christchurch New-Zealand, We have a son Ethan with bleph, he is 18 months old, he has had no surgeries as yet, probably when he is about 4 years old, he does have his 18 mth check up with the opthalmologist in 1 week, so we will see what happens from there.

I just looked at your pic with your cute wee guy:) you look as if you don't have bleph at all! you said you've had only 1 surgery? It looks great! Who else in your family has this? Our Ethan is the very 1st to have bleph? There are pix of him at the site, the younger Ethan (pic of him as a pumpkin etc)

Hope to hear from you soon:)

Leanne and family.

-- blepharophimosis Hi

Hi everyone. I am now managing to finish my message from before. I have 2 sons and the youngest has BPES. I have added a photo of myself and my son, Sam who is 6 months old now.I had one operation when I was about 3 or 4 but remember nothing of it and rely on information from my sister e about it. I am now 28. As she has already said, it is great to finally find out what we have. It may sound ignorant however, it was never explained to us and it has only been researched by us after es daughter had her operation, the results of which are fantastic.Sam has had one hospital appointment in Glasgow where his eye sight was checked and they advised it was fine. They have since referred us to another surgeon who will no doubt carry out the brow suspension later on and continue checking his eye sight.It is great to hear from everyone.

[Guest guest]

Hi Denyse,

Just to clarify a little on this, but I am not an

expert. Many women with BPES go into premature

menopause, but may be fertile until that point.

Also, the ages that women may go into premature

menopause may vary quite a bit - for me, it was

age 35 yrs, while for others, it's a lot younger.

So, a woman with BPES could potentially be

fertile and infertile so to speak, depending on

the timing of the menopause and timing of having

children.

Can anyone add more scientifically to that?

--- denisecam1 <denisecam1@...> wrote:

> Hi, I have BPES and I have 2 sons. One with

> BPES and one without.

> My father has it and has 3 daughters.

>

> I am not very clear on the differences between

> the 2 types but I am

> obviously not he type where the female is

> infertile.

>

>

>

>

>

Find local movie times and trailers on Movies.

http://au.movies.

[Guest guest]

>

>

> Hi Everyone, and welcome to the CML Group. I hope we can make this

> as supportive, informative as what the group used to be. If

> anyone has an suggestions let me know.... I can't wait for this to

> get going.

>

> Amy

_______________

Hi Amy,

I am just curious.....what was your reason for splintering off from

the group and not joining the Google group? What are you hoping to

accomplish that is different?

I have been around forever! and post a little on most groups. I have

a medical background, 6 years of CML and have been Dr. Druker's

patient for 5 years and he answers all my questions....which is why I

try to share what I know.

Will be curious also to see who joins in here.

C. (aka Maui Nanc)

[Guest guest]

>

>

> Hi Everyone, and welcome to the CML Group. I hope we can make this

> as supportive, informative as what the group used to be. If

> anyone has an suggestions let me know.... I can't wait for this to

> get going.

>

> Amy

_______________

Hi Amy,

I thought I already had posted a response to you....but I don't see

it. Is this a moderated group? where the posts will not be posted

until you have read them?

2nd try at posting.

C.

[Guest guest]

I formed this group because there was so many problems with the

google group. I just thought this would be a place where the access

was easy and if anyone wants to come here and chat, vent, get support

they can!

[Guest guest]

Well, Amy, good for you! I'll try to participate in your new group,

although I'm not a medical person or anything close to it. I am a

caregiver for my husband, Bob. I subscribe to other CML groups,

because they all have something to offer. I don't know where we

would be today if not for all the loving and caring people I've met

on the sites. C comes to mind immediately!! (Hi !)

Good luck with this site and here's hoping it will live long and

prosper...........or else we will all leave it because a real cure

has been discovered!!

blessed be nancy wilhelm inyokern ca

>

>

> Hi Everyone, and welcome to the CML Group. I hope we can make this

> as supportive, informative as what the group used to be. If

> anyone has an suggestions let me know.... I can't wait for this to

> get going.

>

> Amy

[Guest guest]

Hello Maui Nanc

I have found the site and am here !!!!

Can't get rid of me that easy....

Love

Annette xx

__________________________________________________

> >

> >

> > Hi Everyone, and welcome to the CML Group. I hope we can make

this

> > as supportive, informative as what the group used to be.

If

> > anyone has an suggestions let me know.... I can't wait for this

to

> > get going.

> >

> > Amy

> _______________

>

> Hi Amy,

> I am just curious.....what was your reason for splintering off

from

> the group and not joining the Google group? What are you hoping to

> accomplish that is different?

>

> I have been around forever! and post a little on most groups. I

have

> a medical background, 6 years of CML and have been Dr. Druker's

> patient for 5 years and he answers all my questions....which is

why I

> try to share what I know.

>

> Will be curious also to see who joins in here.

>

> C. (aka Maui Nanc)

[Guest guest]

Hi, Yusuf,

I am so glad for you that you are reaching out and learning as much as you can

about CML. With time, you will find lots of hope, information and support, and

you will see that you have the possibility a whole, long life to look forward

to. My 19 year old daughter was diagnosed 6 months and 4 days ago (but who's

counting?) :-) and is also on 400mg Gleevec. Every day I find more hope for the

future, and I'm sure you will, too. Just don't stop taking those little pills -

take care of yourself, and enjoy the fact that the outlook for CML patients is

good to excellent.

Best of luck on your CML journey,

Debbie

-------------- Original message --------------

From: yusuf " ÿffffe7ipe " <cipeyusuf@...>

Hello to all;

This is Yusuf from Istanbul, Turkey. I'm a member of this group for about a

week. But i was only reading the messages until now. Now i decided to introduce

myself.

I'm 26 years old. Single and working for in bank in Istanbul. I was diagnosed

with CML (chronic phase) in 1 March 2006. I used Hydroluxe for one month. Then i

started to use Glivec (400 mg) at the end of the March. Now my blood values are

normal. But I dont know If i will be in remission or not. The beginning of the

July my doctor will take a sample from my bone marrow. He said that he will do

this four times a year.

I feel a little dizzy most of the time as a side effect of the Glivec. Its

strength is changing day by day. Some days i feel very good and some days i feel

worse.

I have a brother and we made a test for the transplantation. But it is not ok.

So i dont have an option to make transplantation for now. My doctor says its not

problem becouse its so risky to make transplantation and Glivec is a better

option. So im not searching for a donor now.

Now im trying to return to my ordinary life. I returned to my job again. I try

not to think about my ilness. But it's not easy. I can not make long term plans.

Most of the day i'm thinking about how long will i live? Will i be in remission?

Will someone love me again, becouse who wants to be with me? Will i have and see

my children? This kind of questions are turning in my head.

English is not my fluent language,you know. Thats why i dont have a very good

English. Sorry about that. I did my best to write it understandable.

Thanks for listening..

Yusuf Cipe

---------------------------------

Sneak preview the all-new .com. It's not radically different. Just

radically better.

[Guest guest]

Dear Yusuf

Its good that you have started to post. This board is wonderful, as

is the Asia board for support and information.

My 22 year old son was diagnosed on 6th March this year. He is also

on 400mg Gleevec and responding very well - being tired is the only

one side effect he has.

has a very positive attitude which has helped him through the

rough times - he has a wonderful supportive girlfriend, is signing

up for college in the fall and planning a long and healthy life.

's sister is also not a match and we are not looking at a

transplant - hoping for a cure, or at the very least full management

of the CML.

With all we learn about CML there is so much reason to be hopeful

and to be able to live a good and full life, have your kids, watch

them grow and love. Today is yesterdays future........... none of

us, CML or no CML, should waste a day - we never know whats ahead of

us.

You wrote very clearly, dont worry about that at all - keep us

posted on how you are. These boards have really kept me sane and

hopeful, and everyone on them really helpful.

Take care

Annie

(mom of )

www.livingwithcml.blogspot.com

>

> Hello to all;

>

> This is Yusuf from Istanbul, Turkey. I'm a member of this group

for about a week. But i was only reading the messages until now. Now

i decided to introduce myself.

>

> I'm 26 years old. Single and working for in bank in Istanbul. I

was diagnosed with CML (chronic phase) in 1 March 2006. I used

Hydroluxe for one month. Then i started to use Glivec (400 mg) at

the end of the March. Now my blood values are normal. But I dont

know If i will be in remission or not. The beginning of the July my

doctor will take a sample from my bone marrow. He said that he will

do this four times a year.

>

> I feel a little dizzy most of the time as a side effect of the

Glivec. Its strength is changing day by day. Some days i feel very

good and some days i feel worse.

>

> I have a brother and we made a test for the transplantation. But

it is not ok. So i dont have an option to make transplantation for

now. My doctor says its not problem becouse its so risky to make

transplantation and Glivec is a better option. So im not searching

for a donor now.

>

> Now im trying to return to my ordinary life. I returned to my

job again. I try not to think about my ilness. But it's not easy. I

can not make long term plans. Most of the day i'm thinking about how

long will i live? Will i be in remission? Will someone love me

again, becouse who wants to be with me? Will i have and see my

children? This kind of questions are turning in my head.

>

> English is not my fluent language,you know. Thats why i dont

have a very good English. Sorry about that. I did my best to write

it understandable.

>

> Thanks for listening..

>

> Yusuf Cipe

>

>

> ---------------------------------

> Sneak preview the all-new .com. It's not radically

different. Just radically better.

>

>

[Guest guest]

Hi Yusuf,

I was dx'd CML in March, 2006, as well. I'm on Gleevec 400mg. In the beginning

I went through the same feelings you are experiencing. There were days when I

just didn't feel good about myself, days when I ached all over (side effect of

Gleeved), days I had to leave work early because I felt so bad and days when I

cried and went throught the " poor me stage " . Time and a good attitude will get

you through most. Don't give up on yourself of you career. It will get better.

In fact, I starting working out again. I used to go to a pool and do water

aerobics. I don't now but I set up myself in an area of my basement where I work

out with " bungee cords " and the " Ab Lounger " .

Just keep active, have a positive attitude and go to work as much as you can

you will come throught this.

Keep us posted,

Pam

yusuf ÿffffe7ipe <cipeyusuf@...> wrote:

Hello to all;

This is Yusuf from Istanbul, Turkey. I'm a member of this group for about a

week. But i was only reading the messages until now. Now i decided to introduce

myself.

I'm 26 years old. Single and working for in bank in Istanbul. I was diagnosed

with CML (chronic phase) in 1 March 2006. I used Hydroluxe for one month. Then i

started to use Glivec (400 mg) at the end of the March. Now my blood values are

normal. But I dont know If i will be in remission or not. The beginning of the

July my doctor will take a sample from my bone marrow. He said that he will do

this four times a year.

I feel a little dizzy most of the time as a side effect of the Glivec. Its

strength is changing day by day. Some days i feel very good and some days i feel

worse.

I have a brother and we made a test for the transplantation. But it is not ok.

So i dont have an option to make transplantation for now. My doctor says its not

problem becouse its so risky to make transplantation and Glivec is a better

option. So im not searching for a donor now.

Now im trying to return to my ordinary life. I returned to my job again. I try

not to think about my ilness. But it's not easy. I can not make long term plans.

Most of the day i'm thinking about how long will i live? Will i be in remission?

Will someone love me again, becouse who wants to be with me? Will i have and see

my children? This kind of questions are turning in my head.

English is not my fluent language,you know. Thats why i dont have a very good

English. Sorry about that. I did my best to write it understandable.

Thanks for listening..

Yusuf Cipe

---------------------------------

Sneak preview the all-new .com. It's not radically different. Just

radically better.

[Guest guest]

Hi Yusuf,

I think we can all say that we understand how you feel. All the

fears, the doubts and uncertainties. We've all been there but let

me assure that it really does get better with time.

I was diagnosed when I was only 31 years old (4.5 years ago) and I

had two young daughters that I wondered if I'd ever see grow up. I

was almost finished my Bachelors Degree when I was diagnosed and I

quit my last semester thinking there was no point. The next

semester I re-enrolled and graduated so don't put any of your career

goals on hold. You could potentially live to be a wrinkled old

person and you don't want to say to yourself one day " if I knew I

was going to live this long, I would have done more and not sat

around worrying all the time " .

Give yourself some time to get used to your new life but don't worry

about things you have no control over and always stay positive that

there is every reason in the world to think you will live a long

time in spite of this disease.

We have some members who have gone on to have babies and are living

relatively normal lives so try not to lose hope.

Tracey

--- In , yusuf " ÿffffe7ipe " <cipeyusuf@...>

wrote:

>

> Hello to all;

>

> This is Yusuf from Istanbul, Turkey. I'm a member of this group

for about a week. But i was only reading the messages until now. Now

i decided to introduce myself.

>

> I'm 26 years old. Single and working for in bank in Istanbul. I

was diagnosed with CML (chronic phase) in 1 March 2006. I used

Hydroluxe for one month. Then i started to use Glivec (400 mg) at

the end of the March. Now my blood values are normal. But I dont

know If i will be in remission or not. The beginning of the July my

doctor will take a sample from my bone marrow. He said that he will

do this four times a year.

>

> I feel a little dizzy most of the time as a side effect of the

Glivec. Its strength is changing day by day. Some days i feel very

good and some days i feel worse.

>

> I have a brother and we made a test for the transplantation. But

it is not ok. So i dont have an option to make transplantation for

now. My doctor says its not problem becouse its so risky to make

transplantation and Glivec is a better option. So im not searching

for a donor now.

>

> Now im trying to return to my ordinary life. I returned to my

job again. I try not to think about my ilness. But it's not easy. I

can not make long term plans. Most of the day i'm thinking about how

long will i live? Will i be in remission? Will someone love me

again, becouse who wants to be with me? Will i have and see my

children? This kind of questions are turning in my head.

>

> English is not my fluent language,you know. Thats why i dont

have a very good English. Sorry about that. I did my best to write

it understandable.

>

> Thanks for listening..

>

> Yusuf Cipe

>

>

> ---------------------------------

> Sneak preview the all-new .com. It's not radically

different. Just radically better.

>

>

[Guest guest]

Hi, !

I'm relatively new here, so I don't know your whole story. If I may, can I ask a few questions? What school district are you in? Why will the school not agree to an aide? What did your lawyer have to say about the outcome of the meeting? Lastly, is it possible to move your child to either a different school in the district or a district better suited to handle children protected by IDEA? I mention this last one because our district has offered us this option for my sons, so it does happen.

Sorry to ask so many questions -- I'm sure you've dealt with enough questions lately! -- but I might be able to form a more intelligent opinion for you if I knew some of this.

--Suzanne

[Guest guest]

Hi :

Wow..I could feel the frustration just coming through. I just wanted to give you a little info on home schooling. First off, if you are for sure going the route of home schooling you need to go on the Ohio Department of Educations website and there is a form you need to fill out and send in. I believe it needs to be okayed and signed off by your superintendent. When you withdraw your child from your current public school to home school you are relieving your district of the responsibility it has to provide a Free Appropriate Public Education. When you home school you become your child's public school and all responsibility (including financial) falls on your shoulders. You'd have to pick a curriculum and your are responsible for providing (and paying for) any related services your child will need; such as, speech, O/T, etc. Unfortunately no funding is thrown your way to help off-set the costs. I had looked into this possibility with my own child because of issues she was having at school. Unfortunately we have sold our house and moved to another district who so far seems to be doing okay. (My daughter is in high school). I know this probably does not answer all your questions but it is at least a start.

Barb

-----Original Message----- From: Biehl Sent: Aug 24, 2006 2:56 PM Subject: [ ] Hi

Hello Everyone,

I have not written in awhile and wanted to update those of you interested in how things are going with Dylan's IEP and the legal process we have had to go thru to get what he needs.

We have had along summer waiting for our July meeting that was promised by the school and never happened. We waited to be contacted to meet his teacher before school started and that never happened. We waited for an updated IEP and recieved a copy of it the second day of school after we kept him home the first day.

Our attorney and the IEP team met today and I must tell you I was frustrated. The school is not one bit interested in the fact when he comes home that he can not function. It was said that as long as he is doing fine in school that there was not much else that they needed to worry about. Our son's intervention specialist is always on the defensive can't get past her own problems to see that she is hurting our son by ignoring his sensory issues. She was doing alot of the "I have done," and "me" I wanted to remind her that this was not about her.

They have Dylan doing his own documenting of his day for us. Which I am unsure how I feel about this. We did have a victory in the sense that they got specific in the IEP on times and days of services. They turned us down when we asked for his own aide.

We have gotton to the point we want to home school him. Does anyone here do that or know someone who is home schooling? At least we would no exactly what he gets and how he is doing.

Its been a very long day so if I am babbling sorry. I know he will be home in a half hour and off the wall. Please let me know about home schooling. Thanks

Get your own web address for just $1.99/1st yr. We'll help. Small Business.

[Guest guest]

Hi ,

I'm an Army wife, and we move quite a bit. So, homeschooling is actually popular on base, because trying to keep up with all the requirements at each base is tough. What I do know from talking to my friend, Kendra, we talked about it at length one day. Her son appeared to be ADHD, and had trouble focusing at school, etc. She said he was smarter than what the public school system was doing for him. She and her husband were both homeschooled and enjoyed it. Of course they got good grades and had everything done, and she said they do social activities in the afternoon. She was a housewife like me, and her husband was our church chaplain. Anyway, her son's behavior was pretty bad and no one had the heart to tell her what she probably already knew. I feel he had ADHD, but she said it was the peanut butter she'd give him. I don't know, but she

finally pulled him out of school and decided to try it for one semester. I had my doubts.

But you know what? That boy went from the monster at church to the ideal preacher's son! No kidding. Kendra was dropping her daughter at my son's school and he was there and was very polite to me. He was calm, under control and well behaved!!!! Couldn't believe it!!! So, that lesson taught me, that for some people alternative methods work. I don't know how Kendra did it, because she's very mild, but she waited until her hubby was back from Iraq, so I think he came home at lunchtime and would somehow get him to get his work done. Kendra told me that was the plan. Because she doesn't discpline. Needless to say the deployment was hard on her. I don't want to judge the child, since my own folks haven't been supportive of my son, so I'm going to say that he probably had ADHD, and wasn't getting the attention that he needed.

So, that's one success story. The most I know from what she told me was that they do all the schoolwork in the morning and soccer, etc. in the afternoon.

, another friend, who also homeschooled, I think she said that in places like Utah or whatever, the homeschoolers get together every afternoon for activities. They seem to think that they are doing a better job academically. I agree all those kids were doing well. Kendra's son is the only one that I literally saw a whole different person. 's kids seemed very nerdy and sheltered. They were nice, but not on top of it. Sadly, at one of the daughter's age of 12 I was already watching Madonna on MTV, where they didn't even have cable or satellite. So, I don't even think they knew about MTV. They lived in a bubble.

There is also another great book, that I really loved, by Whechel, Blair from "Facts of Life", she wrote a book for Christian moms on homeschooling and the like. Her son was ADHD, and how he did better at home. They'd do each assignment then let him run around for 15 min or so at a time and that worked. I can't think of the title, well it could be the Facts of Life. She has a website you can search for too.

I'm thinking of it myself, except that seems to do well with seeing the other kids. Plus I think we'd drive each other nuts...

Patti

----- Original Message ----From: Biehl <angelabiehl@...> Sent: Thursday, August 24, 2006 2:56:03 PMSubject: [ ] Hi

Hello Everyone,

I have not written in awhile and wanted to update those of you interested in how things are going with Dylan's IEP and the legal process we have had to go thru to get what he needs.

We have had along summer waiting for our July meeting that was promised by the school and never happened. We waited to be contacted to meet his teacher before school started and that never happened. We waited for an updated IEP and recieved a copy of it the second day of school after we kept him home the first day.

Our attorney and the IEP team met today and I must tell you I was frustrated. The school is not one bit interested in the fact when he comes home that he can not function. It was said that as long as he is doing fine in school that there was not much else that they needed to worry about. Our son's intervention specialist is always on the defensive can't get past her own problems to see that she is hurting our son by ignoring his sensory issues. She was doing alot of the "I have done," and "me" I wanted to remind her that this was not about her.

They have Dylan doing his own documenting of his day for us. Which I am unsure how I feel about this. We did have a victory in the sense that they got specific in the IEP on times and days of services. They turned us down when we asked for his own aide.

We have gotton to the point we want to home school him. Does anyone here do that or know someone who is home schooling? At least we would no exactly what he gets and how he is doing.

Its been a very long day so if I am babbling sorry. I know he will be home in a half hour and off the wall. Please let me know about home schooling. Thanks

Get your own web address for just $1.99/1st yr. We'll help. Small Business.