[Guest guest]

- sorry it took me so long to welcome you. (I've

had sick kiddos and haven't been online much.) Thank

you so much for posting your photos. It was so fun to

" see you grow up " . You are a beautiful girl!

Welcome to the group.

April Eisele, Colorado, USA

Wife to Jon

Mommy to Mira, Micah & Misha

__________________________________

FareChase: Search multiple travel sites in one click.

http://farechase.

[Guest guest]

You're welcome, Tracey. They're fun to write and they clarify my own

thinking (such as it is). I just wish I had time for more posting

when I'm back in my busy life...

Love,

R

>

> Hi ,

>

> I just wanted to thank you for the wonderful reports you sent. They

> were packed with good information and written in easy, layman terms,

> that we can all understand. Thank you so much for that!

>

> I look forward to hearing more of your reports

> Love,

> Tracey

>

[Guest guest]

,

Just wondering if you ever read the study I sent you or checked the

other info I cited? I'm jealous that you focus on Angel, Marcie and

Loni but have never responded to me or answered my questions. :-)

Carl Grimes

Healthy Habitats LLC

[Guest guest]

Hey there Beth and Jen,and everyone else of course!

Regarding surgery being cosmetic, What's that all about anyway, how foolish of any Dr., Nurse or Insurance company for that matter, to think that BEPS is cosmetic. The first Doctor i took Malenah too, told me exactly what she had almost immediately, that was impressive, but that's about all he said that impressed me. He told me to look it up on the Internet to learn what it was. I thought that was the Dr.'s job, to tell you about the diagnosis, times are changing. He also said her surgery would be "strictly cosmetic." Our second opinion, Dr. Grannet, in San Diego, said it was not cosmetic, but functional. He went on to say how frustrating it must be for Lenah to hold her eyebrows up to see properly. He had real empathy. And he didn't tell me to go home and look it up on the Internet, well, he did, but only after he had answered all my current questions and concerns. Then he refer me to his partner who would do the surgery, he said he's the best, and that Dr. Grannet had taken his own children to see him. I thought it was so cool that the Dr. said "i know where my expertise are, and where they are not, I would only want the best to do my children's surgery." How humble is that!

I had a Dr. ask me about my cerebral palsy, he asked me how far i went in my education, and other very intrusive questions, you know, the arrogant "I know better than you" type. Real condescending and flat out rude. How can people treat others like that? I went home in tears, i felt so down on myself. By the time i got home, i got mad, how rude. I sure wish i could be more forcefully sometimes.

A girl at church asked what Malenah "calls us," stupid question, Mom and Dad, i told her, she asked again, "i know but what does she call you? Mom and Dad." Another person asked me where i got Lenah's shoes, i said in China, she said serious as can be, "Oh, did they come with her?" I laughed out loud . My girlfriend said i should have told her "NO, did yours!" See, snappy comeback, i never have those! My favorite question is, Are the other children your own? Yes, they're all mine! I know, I know, people sometimes don't know better, but come on.

Yikes, i sure did carry on !

kk

kk

[Guest guest]

Hello My son Aedan is 3.5. We just went through another stage of different people asking about his eyes, some horribly rude. Last night at the dinner table he said I am going to make a machine to make my eyes big!!!! This is the first time he has talked about his eyes in a negative way. We talked about how we are all different have different eyes, hair ,skin , bodies etc. He insisted that he is going to make a machine that will make his eyes big like his sisters and he said, See like this as he opened his eyes as wide as he could. I am looking for ideas of what to say to him specifically, what I said to him sounded ok but he goes through all these operations to help his eyes so he knows something is wrong, How can I talk to him to be truthfull and help his sense of self?? thank you for any ideas what worked for you.

[Guest guest]

Hello , I just wanted to say it really hurts doesnt it, when our children realise they look slightly different. Dont worry it really doesnt hurt them as much as it hurts us. We have all the emotion tied up with everything else that goes with having a child. Also Aedan sound like a genius to me, at the age of 3.5 he already has worked out that he can 'make' a machine to open his eyes wider. mmmm! I think I would have asked him how he would do that, what he would use, and what would this machine look like. I would have focussed on the inventor side of his sentance rather than eyes wider bit.... Just a thought as I was reading your message. Keep going you are doing fantastically well. Tell him every day he is fabulous and praise him for everything he does well. Be happy and confident around him and he will follow your lead. It truly works... Regards clare, Hertfordshire UKrainamint@... wrote: Hello My son Aedan is 3.5. We just went through another stage of different people asking about his eyes, some horribly rude. Last night at the dinner table he said I am going to make a machine to make my eyes big!!!! This is the first time he has talked about his eyes in a negative way. We talked about how we are all different have different eyes, hair ,skin , bodies etc. He insisted that he is going to make a machine that will make his eyes big like his sisters and he said, See like this as he opened his eyes as wide as he could. I am looking for ideas of what to say to him specifically, what I said to him sounded ok but he goes through all these

operations to help his eyes so he knows something is wrong, How can I talk to him to be truthfull and help his sense of self?? thank you for any ideas what worked for you.

Use Photomail to share photos without annoying attachments.

[Guest guest]

Thanks ,

that explains why Tim has had me on such a high dose to get me a good

response. I put myself down to 400mg even though he wasnt happy but if

all fails with this new drug he is trying to get me on then we have

discussed that i might try the 300mg.

Susie Leech

Dx Nov 2006

Currently off Gleevec

>

[Guest guest]

Hi Jackie

My daughter shares your birthday J

If you would like to discuss Bleph and POF

please mail me direct as I was only diagnose 2 weeks ago so it’s still a

bit fresh to post on the web for all to see (it might sound weird but it’s

just how I feel right now).

My brother-in-law lives in Ohio, we were out there

18 months ago for the wedding.

Enjoy your day

Bryony

From:

blepharophimosis

[mailto:blepharophimosis ]

On Behalf Of grandphant

Sent: 30 March 2006 02:35

blepharophimosis

Subject: blepharophimosis

Hello ! I've

always loved that name! Anyway, I'm dizzy with emotion! I will pray for you

that the tests come back in your favor. I havn't read any of the information on

these links yet and I'm scared to too! I read an article about the posiible

conection between the two conditions( bleph and POF) a couple of years ago but

it was pretty over my head and sounded like speculation. I honestly rejected

the information because I didn't want it to be true. I hadn't heard anything

else about it until the article I read just before I found this site and I'm a

little overwhelmed. I didn't get my period till I was 18 and began taking bith

conrol pills directly after I started. I stoped taking them about 4 years ago

and have only had 2 periods since. I've never purposefully tried to get

pregnant but it was something I thought I had the option to do and would do

when the time was right.

Did you go directly to your Gyn. with this information and ask

to be tested?

What does the testing intale?

Were your periods abnormal at all? (Oh my gosh, I'm being

rather forward, I hope you don't mind)

On a lighter note! My birthday is on the 19th of May, Do we

share a Birthday?

Hope to hear from ya.

Take care

Jackie

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.385 / Virus Database: 268.3.3/296 - Release Date: 29/03/2006

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[Guest guest]

, Please stay on that side of that side of Denver and I'll stay here. Thank God no problems seen here. Remember "this is only a test" and yikes one nasty one too. Hope this is the end of the cycle. Take care. carolg........Suzanne <suziesgoats@...> wrote: that's good .. I did the willow bark and cayenne --didn't phase me, even chamomile... didn't have valerian on hand.. dud tge DTRO also and a few others. including DMSO.. Glad to hear you're recovering. The pain med I have the dr said take only if you need it..otherwise don't take it... Suzideuteronomy2929 <deuteronomy2929@...> wrote: I made up some capsules of white willow bark, valerian and ceyanne, and put the Deep Tissue Repair Oil on it, and it worked great! I was released for full duty at work today, about a half week sooner than the "doctors" said I would be.

[Guest guest]

I don't think from my state either where he lives as our drivers can't be that bad or maybe it is the law of attraction for some strange reason. He surely doesn't deserve bad things happening to a good person....feel well boy. carolgRainbow Egret <egret.09@...> wrote: Umm where did Guido get his drivers licence from - out of a Corn Flake packet???? Tracey

[Guest guest]

Thanks, Carol! I am doing wonderfully. At work, they look at me

strangely when I say with a small laugh and smile that this is a great

adventure. But I'm used to that look.

" Everybody's always drumming on about the future but I'm not letting it

interfere with my laughs. "

--- In health , carolG <cgiambri@...>

wrote:

>

> I don't think from my state either where he lives as our drivers

can't be that bad or maybe it is the law of attraction for some strange

reason. He surely doesn't deserve bad things happening to a good

person....feel well boy.

>

> carolg

[Guest guest]

, that's okay if you get strange looks at work. You surely are an original. Keep it up bro. Carolg Thanks, Carol! I am doing wonderfully. At work, they look at me strangely when I say with a small laugh and smile that this is a great adventure. But I'm used to that look."Everybody's always drumming on about the future but I'm not letting it interfere with my laughs.">> I don't think from my state either where he lives as our drivers can't be that bad or maybe it is the law of attraction for some strange reason. He surely doesn't deserve bad things happening to a good person....feel well boy.> > carolg

[Guest guest]

Sure enough

Ybarra

2570 S. Valley Hwy #33

Denver, CO 80222

--- In health , Suzanne <suziesgoats@...>

wrote:

>

> ,\

> Send me your mailing addy again... I lost it.

> Suzi

>

>

> Suzi

[Guest guest]

formiga95127 wrote:

> Hello Does anyone have any information on that was DX and was

> going to try having a baby.

>

>

Check her out at her blog.

Zavie

http://www.glamour.com/lifestyle/blogs/editor

>

>

>

[Guest guest]

:

Did you make a post earlier this week about people having trouble getting

back on Gleevec if they had been off of it? I saw an article last year in the

WSJ that stated that people with GIST that take Gleevec were found unable to

get back on Gleevec, but is there data regarding people with CML? I thought

that that specific article noted that CML patients were able to " restart "

where GISTs patients were not.

I ask this in light on the post on " Pulse Therapy " and certain protocols

that allow for G-Holidays.

Thanks for the clarification.

Matt

Florida

DX January 2005

[Guest guest]

,

No, I didnt post, but I have been on Gleevec over 4 years and have been off

and on for short periods when I became toxic or my counts wouldnt come up, and

have had no trouble with it. It wasnt for more than a few weeks, tho.

Denice

mtmaynor@... wrote:

:

Did you make a post earlier this week about people having trouble getting

back on Gleevec if they had been off of it? I saw an article last year in the

WSJ that stated that people with GIST that take Gleevec were found unable to

get back on Gleevec, but is there data regarding people with CML? I thought

that that specific article noted that CML patients were able to " restart "

where GISTs patients were not.

I ask this in light on the post on " Pulse Therapy " and certain protocols

that allow for G-Holidays.

Thanks for the clarification.

Matt

Florida

DX January 2005

[Guest guest]

Anybody hear how Suzi's doing? Was she in and out of the hospital the same day? Can't wait until she's well enough to give us the scoop.

Carol G. (or is it carolg?) called me from Texas today. She's visiting her daughter and grandbaby. Her cold sounds much better...she was very bubbly and energetic on the phone. Maybe she just needed to get away from that Colorado snow and freezing temps for awhile!!! Carol is amazing. She's up, even when she's down! Yes, Carol...I'm talking about YOU!

Gloria

[Guest guest]

Hi I am sorry that you have had a rough road of things so far.

Your Doctor(a cml specialist preferably) is the best one to help you

manoever through this. People can give you their personal opinions,

but after all they are just that -personal.

In the end you will have to decide what is best for you and your

family. I too could not tolerate gleevec, or sprycel, and am now

taking interferon with wonderful results.

All the best

> >

> > Hello...

> >

> > I was diagnosed in December 2006, and cannot tolerate the

> Gleevec. I have lost 15lbs and only weigh 93lbs now. I see a

> transplant physician on April 3rd. Im taking Hydroxyurea 500mg,

due

> to me not being on any therapy. I am hoping for some insight on

the

> transplant. I am 38 yrs old, so I have that in my favor, but I am

a

> single mother and will be off of work with no pay for several

> months, if I go ahead with the transplant. Also is there some kind

> of disability that I could apply for during that time?

> >

> > '

> >

> >

>

[Guest guest]

Hi,

I was cleaning up my inbox and came across this post of yours. I don't

recall if I answered. did get pregnant and is in her 4th month. You can

read all about it on her blog.

http://www.glamour.com/lifestyle/blogs/editor

Once at the blog, go to her archives to get the whole story.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ]

Hello Does anyone have any information on that was DX and was

going to try having a baby.

[Guest guest]

Hello Zavie

Yes I did get it thank you so much, I have been

reading her blogs, and I have also purchased her book.

I would love to thank you again for the information.

--- Zavie miller <zmiller@...> wrote:

> Hi,

>

> I was cleaning up my inbox and came across this post

> of yours. I don't

> recall if I answered. did get pregnant and is

> in her 4th month. You can

> read all about it on her blog.

>

> http://www.glamour.com/lifestyle/blogs/editor

>

> Once at the blog, go to her archives to get the

> whole story.

>

> Zavie

>

> Zavie (age 68)

> 67 Shoreham Avenue

> Ottawa, Canada, dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

>

> [ ]

>

> Hello Does anyone have any information on that

> was DX and was

> going to try having a baby.

>

>

>

>

>

[Guest guest]

Note: forwarded message attached.

Please read the message below about an

upcoming FREE training opportunity

for self-advocates and/or parents of children with disabilities. Professionals - Please feel free to circulate to any self-advocate

and/or parent.

Self-advocates and parents – feel free

to check out www.partnersinpolicymaking.org

for additional information about the program. Participating in the

program is an exciting opportunity to network with other people who want to effect

change. We will provide Friday night hotel accommodations each month as

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CMR is facilitating the Partners in Policymaking leadership

training program between the months of January and May 2008. Partners in

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in influencing policy development at all levels. Currently, there are more than

20 Partners in Policymaking graduates in northeast Ohio, and CMR is anticipating adding to the

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Application packets are

available now for the 2008 class of Partners in Policymaking.

Reserve your space early by calling CMR at 216.622.0755 or by emailing gmitchner@... for

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Partners in Policymaking

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The Partners in

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work with the schools and communities

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way. This program will give you the

insight and skills to

effect positive change in your family, community,

state— and even the

country. For me, it was a lifechanging experience.

Mitchner, Class of

2006

[Guest guest]

>

> I was wondering if anyone has experienced signs that the xolair has been

> wearing off right before you are to receive the next injection? More

> asthma symptoms before the next shots. I have only had two shots and I

> was convinced that I was using my albuteral less often but the last few

> days I have had to use my inhaler again. The other thing I was

> wondering, do any of you think allergy shots may cause you to experience

> more allergies wheezing and sneezing? I am starting to think they may

> be making things worse for me.

>

,

Thanks for your post. You are the first person that I have heard of

who has benefited from just one or two shots. Usually, it takes

people months to see any results whatsoever. It took me over a year.

I always feel better after my regular allergy shots. Sometimes, I

feel a tad worse just after my xolair shots. Wierd isn't it?

We have some professionals in this group that can answer your

questions better than I can.

Talk to your doctor about this too and keep us updated

Doug

Group founder

[Guest guest]

I have been taking the shots for over a year not and I seem to be experiencing a

wearing off of the Xolair shortly before the next shot; approximately a day or

so. I noticed a little tightness in my chest from time to time late in the

afternoon. I was beginning to feel this was my imagination. I am glad to hear

others are expeiencing the same effect.

As a result, I asked to increase the dose a little bit since some of the

medication in the second vial was being tossed anyway. Since the increase, the

tightness has seemed to be less noticable and less frequent. The use of my

Albuterol inhaler has been greatly reduced since the increase (approximately 1

or 2 times a week, if that).

I am in the process of flipping a house. I have been pleasantly surprised I

have not experienced more problems because of all the sheetrock and dust withn

the house plus all the other junk such as paint fumes and insulation generated

from painting and moving equipment from location to location.

I have to attribute this inprovement to Xolair.

Steve Zimmerman

Have a Good Day

785-296-6947

________________________________

From: [mailto: ] On

Behalf Of Becker,

Sent: Friday, September 07, 2007 9:05 AM

Subject: [ ]

I was wondering if anyone has experienced signs that the xolair has been

wearing off right before you are to receive the next injection? More

asthma symptoms before the next shots. I have only had two shots and I

was convinced that I was using my albuteral less often but the last few

days I have had to use my inhaler again. The other thing I was

wondering, do any of you think allergy shots may cause you to experience

more allergies wheezing and sneezing? I am starting to think they may

be making things worse for me.

[Guest guest]

---

Every time I had a xolair shot it would wear off just a few days

before, as well. Allergy shots were terrible for me, and since cannot

take any because of exacerbated symptoms. I think that the xolair may

wear off because the Ige levels build up in our blood again, near the

end of the shots. i think it might get better after a year or so. Not

sure.

- In , " Becker, " <nbecker@...> wrote:

>

> I was wondering if anyone has experienced signs that the xolair has been

> wearing off right before you are to receive the next injection? More

> asthma symptoms before the next shots. I have only had two shots and I

> was convinced that I was using my albuteral less often but the last few

> days I have had to use my inhaler again. The other thing I was

> wondering, do any of you think allergy shots may cause you to experience

> more allergies wheezing and sneezing? I am starting to think they may

> be making things worse for me.

>

>

>

>

[Guest guest]

I am glad other people may be having the same experience! My asthma was not

really not that bad to begin with with before xolair, but I probably used the

albuterol at least once a day and then I noticed hey...I am not using it! The

last few days my asthma has been worse than normal...Just had an allergy shot or

maybe general allergies are getting to me and it's not related to the xolair.

But I get my 3rd shot next Friday too. Just trying to figure it out. Thanks

for your input!

________________________________

From: [mailto: ] On

Behalf Of haroldbrenda

Sent: Friday, September 07, 2007 12:56 PM

Subject: Re: [ ]

---

Every time I had a xolair shot it would wear off just a few days

before, as well. Allergy shots were terrible for me, and since cannot

take any because of exacerbated symptoms. I think that the xolair may

wear off because the Ige levels build up in our blood again, near the

end of the shots. i think it might get better after a year or so. Not

sure.

- In <mailto: %40> ,

" Becker, " <nbecker@...> wrote:

>

> I was wondering if anyone has experienced signs that the xolair has been

> wearing off right before you are to receive the next injection? More

> asthma symptoms before the next shots. I have only had two shots and I

> was convinced that I was using my albuteral less often but the last few

> days I have had to use my inhaler again. The other thing I was

> wondering, do any of you think allergy shots may cause you to experience

> more allergies wheezing and sneezing? I am starting to think they may

> be making things worse for me.

>

>

>

>