Re: i'm new here...

March 14, 2005

Hello Dawn and welcome.

I am glad you found this very supportive and great group, though very sorry you have a need to be here.

----- Original Message ----- From: Dawn

Sent: Friday, March 11, 2005 17:57

Subject: i'm new here...

hi there I'm new to the group. My name is Dawn I am 27 years old I have had RA since I was 15 years old. I live in Michigan, I have RA in every joint in my body except spine and neck (even though in the past couple weeks I think other wise). I my main doctor is at the University of Michigan and I've been seeing her since I was first diagnosted. Right now non of my medications are right and I have been living in A LOT of pain. It hurts mentally a lot and NO ONE knows what I go through on a daily basis. April 25, 2002 I had a total left hip replacement and November 24, 2003 I had a total right hip replacement. My life is not normal and I dont know if it will ever be because of this disease and it hurts. I hope to find friends here that know what I go through day in and day out. thanks for listening...~Dawn~

March 15, 2005

Welcome, Dawn, this is a great group and you will find lots of support. I was

fortunate enough to be diagnosed with RA in June of 2003 and went right on

the TNF blocking drugs, having 6 months of symptoms before diagnosis. I

feel blessed to have been diagnosed with these drugs available because I

have had great success with Humira and am in almost total remission with my

RA! However, I also suffer from UC, Fibro and Costochondritis and have had

chronic pain for over 2 years with something or another. I see I'm rambling a

bit because I am on Percoset tonight so I will just say I look forward to your

posts!

--- In Rheumatoid Arthritis , " Dawn " <hokytown@a...>

wrote:

>

> hi there I'm new to the group. My name is Dawn I am 27 years old I

> have had RA since I was 15 years old. I live in Michigan, I have RA

> in every joint in my body except spine and neck (even though in the

> past couple weeks I think other wise). I my main doctor is at the

> University of Michigan and I've been seeing her since I was first

> diagnosted. Right now non of my medications are right and I have been

> living in A LOT of pain. It hurts mentally a lot and NO ONE knows

> what I go through on a daily basis. April 25, 2002 I had a total left

> hip replacement and November 24, 2003 I had a total right hip

> replacement. My life is not normal and I dont know if it will ever be

> because of this disease and it hurts. I hope to find friends here

> that know what I go through day in and day out. thanks for

> listening...

>

> ~Dawn~

March 15, 2005

Hi Dawn,

Welcome

here. I think you will find many who are willing to talk about the

ins and

outs of living with RA. I hope that you can feel heard and

understood

as we gather strength from each other.

I am 28

now, but compared to your experience am quite new to the real

Effects of

ra, although I can trace mild symptoms back to junior high.

I am

also currently living in MI in the Detroit area.

Love and

peace to you

Yellow

Improve it. Agitate. Promote freedom and

justice. Educate and empower.

Use your resources to reach those who have

not been where you have been,

nor seen what you have seen. In doing this

we build a stronger nation.

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

From: Dawn

[mailto:hokytown@...]

Sent: Friday, March 11, 2005 7:57

PM

To:

Rheumatoid Arthritis

Subject:

i'm new here...

hi there I'm new to the group. My name is Dawn I

am 27 years old I

have had RA since I was 15 years old. I live in

Michigan, I have RA

in every joint in my body except spine and neck

(even though in the

past couple weeks I think other wise). I my main

doctor is at the

University of Michigan and I've been seeing her

since I was first

diagnosted. Right now non of my medications are

right and I have been

living in A LOT of pain. It hurts mentally a lot

and NO ONE knows

what I go through on a daily basis. April 25, 2002

I had a total left

hip replacement and November 24, 2003 I had a

total right hip

replacement. My life is not normal and I dont know

if it will ever be

because of this disease and it hurts. I hope to

find friends here

that know what I go through day in and day out.

thanks for

listening...

~Dawn~

March 15, 2005

bless your hearts, so young with this horrid disease.

i am 52,w asnt even DXed till three, four years ago. at first, i saw

a doctor who told me about the wheat allergy and i tried to change

my whole lifestyle and diet for a year, but decided i couldnt see

much real difference between not eating wheat and eating wheat.

but also at the time, my long-term personal relationship was falling

apart and, having lost that support system, it didnt honestly seem

worth the continuing struggle.

that was then, this is now.

now i am working on making some cha nges in my life and lifestyle,

again, mainly now because i hurt ALL the time, all over, and cant

work, cant take painkillers, have to take elavil to sleep, can

barely take walks any more, and am fighting clinical depression

already, with Effexor, plus the depressing aspects of RA.

making this first step to get with a support group is one of the

best things we can do for ourselves.

RA can isolate us. we cant let it win.

ly ly

--- In Rheumatoid Arthritis , " Zoom " <zoom@p...>

wrote:

> Hi Dawn,

>

> Welcome here. I think you will find many who are willing to talk

about

> the

>

> ins and outs of living with RA. I hope that you can feel heard and

>

> understood as we gather strength from each other.

>

erms/> Service.

March 15, 2005

well thank you I hope we can become friends then...wow someone else in my age range and living in metro detroit what are the chances? lol

-dawn-

In a message dated 3/15/2005 12:04:14 AM Eastern Standard Time, zoom@... writes:

Hi Dawn,

Welcome here. I think you will find many who are willing to talk about the

ins and outs of living with RA. I hope that you can feel heard and

understood as we gather strength from each other.

I am 28 now, but compared to your experience am quite new to the real

Effects of ra, although I can trace mild symptoms back to junior high.

I am also currently living in MI in the Detroit area.

Love and peace to you

Yellow

June 10, 2009

Hi things look ok ,keep a copy of all records.

________________________________

From: Zema <marylzema@...>

Sent: Tuesday, June 9, 2009 7:49:02 PM

Subject: [ ] I'm new here...

Hello all -

My husband was diagnosed with CML on May 9th 2009. He had symptoms for about

8-10 weeks, night sweats, joint pain and fatigue but we just passed that off as

a bad flare up of his Ulcerative Colitis (with similar symptoms) that he has

battled with for about 28 years.

Finally he saw the doctor about his colon problems and as a result of a routine

blood test, getting ready for a colonoscopy, this frightening " white blood count

cell thing " reared it's ugly head. I tried to stay calm, figuring it had to be

an infection, but indeed we received the diagnosis just three days later. A

bottle of Gleevec (400 mg) was FedEx'd to our doorstep the next day.

The first blood test showed his WBC at 210,000 and after 2 weeks it came down to

180,000. It appears that Gleevec is doing it's thing. My husband has a ton more

energy and even laughs like he used to. For now his side effects seems to be

limited to bad cramps and a puffy face, but he's not complaining. The next blood

test is on 6/23 so we'll see what that reveals.

Aside from good old-fashioned support, I need help understanding all the

terminology. ..all the blood stuff. I mean is a WBC of 1.8 the same as 180,000?

Platelets, hemoglobin, RBC, I'm so confused! I will go to my husband's next

doctor's appointment with him so I can question as much as possible (he's not so

good at that). In the meantime I feel a little paralyzed and hope I can ask some

stupid questions here to prep for the appointment.

Thanks for hearing me out. Thanks for forming this group. I look forward to

being a part of it.

June 10, 2009

Zavie,

When I went to the clinic for my 1st appt, the social worker gave me a

journal with pages for appts, results, questions and answers to ask the Dr and a

place for notes. It has been very helpful. I keep up with my test results and

any symptoms I may be having to Gleevec. I also get a copy of all my blood test

when I go. I can keep up with my weight and vital signs, and anything that I

don't want to forget. It helps me to keep track of eveything because goodness

knows, if I had to rely on my memory to remember things, I would screwed!!!

Maybe that is something that other members can request. Just a

suggestion.....

From: Zavie <zmiller@...>

Subject: RE: [ ] I'm new here...

Date: Wednesday, June 10, 2009, 2:15 AM

Hi ,

Welcome to the club that nobody really wants to be a member of. Keep asking

questions. After a while you will get to understand everything.

Like said, make sure that you get a copy of all the tests. Once you put

two of them side by side it is pretty obvious as to how well you are doing.

Side affects are at their worst in the first month or two and then they

diminish.

When you go to the next appointment make sure that you write down all your

questions. Also, if you have a tape recorder (digital) bring it along.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Zema

Sent: June 9, 2009 8:49 PM

groups (DOT) com

Subject: [ ] I'm new here...

Hello all -

My husband was diagnosed with CML on May 9th 2009. He had symptoms for about

8-10 weeks, night sweats, joint pain and fatigue but we just passed that off

as a bad flare up of his Ulcerative Colitis (with similar symptoms) that he

has battled with for about 28 years.

Finally he saw the doctor about his colon problems and as a result of a

routine blood test, getting ready for a colonoscopy, this frightening " white

blood count cell thing " reared it's ugly head. I tried to stay calm,

figuring it had to be an infection, but indeed we received the diagnosis

just three days later. A bottle of Gleevec (400 mg) was FedEx'd to our

doorstep the next day.

The first blood test showed his WBC at 210,000 and after 2 weeks it came

down to 180,000. It appears that Gleevec is doing it's thing. My husband has

a ton more energy and even laughs like he used to. For now his side effects

seems to be limited to bad cramps and a puffy face, but he's not

complaining. The next blood test is on 6/23 so we'll see what that reveals.

Aside from good old-fashioned support, I need help understanding all the

terminology. ..all the blood stuff. I mean is a WBC of 1.8 the same as

180,000? Platelets, hemoglobin, RBC, I'm so confused! I will go to my

husband's next doctor's appointment with him so I can question as much as

possible (he's not so good at that). In the meantime I feel a little

paralyzed and hope I can ask some stupid questions here to prep for the

appointment.

Thanks for hearing me out. Thanks for forming this group. I look forward to

being a part of it.

June 10, 2009

>

> From: Zavie <zmiller@...>

> Subject: RE: [ ] I'm new here...

>

> Date: Wednesday, June 10, 2009, 2:15 AM

>

> Hi ,

>

> Welcome to the club that nobody really wants to be a member of. Keep asking

> questions. After a while you will get to understand everything.

>

> Like said, make sure that you get a copy of all the tests. Once you put

> two of them side by side it is pretty obvious as to how well you are doing.

>

> Side affects are at their worst in the first month or two and then they

> diminish.

>

> When you go to the next appointment make sure that you write down all your

> questions. Also, if you have a tape recorder (digital) bring it along.

>

> Zavie

>

> Zavie (age 70)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> 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

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> 3.7 log reduction Jan/09

> 3.8 log reduction May/09

> e-mail: zmillersympatico (DOT) ca

> Tel: 613-726-1117

> Fax: 613-482-4801

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

> Zema

> Sent: June 9, 2009 8:49 PM

> groups (DOT) com

> Subject: [ ] I'm new here...

>

> Hello all -

>

> My husband was diagnosed with CML on May 9th 2009. He had symptoms for about

> 8-10 weeks, night sweats, joint pain and fatigue but we just passed that off

> as a bad flare up of his Ulcerative Colitis (with similar symptoms) that he

> has battled with for about 28 years.

>

> Finally he saw the doctor about his colon problems and as a result of a

> routine blood test, getting ready for a colonoscopy, this frightening " white

> blood count cell thing " reared it's ugly head. I tried to stay calm,

> figuring it had to be an infection, but indeed we received the diagnosis

> just three days later. A bottle of Gleevec (400 mg) was FedEx'd to our

> doorstep the next day.

>

> The first blood test showed his WBC at 210,000 and after 2 weeks it came

> down to 180,000. It appears that Gleevec is doing it's thing. My husband has

> a ton more energy and even laughs like he used to. For now his side effects

> seems to be limited to bad cramps and a puffy face, but he's not

> complaining. The next blood test is on 6/23 so we'll see what that reveals.

>

> Aside from good old-fashioned support, I need help understanding all the

> terminology. ..all the blood stuff. I mean is a WBC of 1.8 the same as

> 180,000? Platelets, hemoglobin, RBC, I'm so confused! I will go to my

> husband's next doctor's appointment with him so I can question as much as

> possible (he's not so good at that). In the meantime I feel a little

> paralyzed and hope I can ask some stupid questions here to prep for the

> appointment.

>

> Thanks for hearing me out. Thanks for forming this group. I look forward to

> being a part of it.

>

June 10, 2009

Hi ,

If this is the package from Novartis, it is excellent for keeping track of

your CML. You just have to ask your doctor for it.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Sent: June 10, 2009 3:01 AM

Subject: RE: [ ] I'm new here...

Zavie,

When I went to the clinic for my 1st appt, the social worker gave me a

journal with pages for appts, results, questions and answers to ask the Dr

and a place for notes. It has been very helpful. I keep up with my test

results and any symptoms I may be having to Gleevec. I also get a copy of

all my blood test when I go. I can keep up with my weight and vital signs,

and anything that I don't want to forget. It helps me to keep track of

eveything because goodness knows, if I had to rely on my memory to remember

things, I would screwed!!! Maybe that is something that other members can

request. Just a suggestion.....

From: Zavie <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca>

Subject: RE: [ ] I'm new here...

groups (DOT) <mailto:%40> com