RE: another introduction

[Guest guest]

Welcome to the group. Well I am on MS Contin. It works alright

although there is still breakthrough pain. I am one of those that

surgery is not expected to help so I can understand how you feel. I

have lots of experience in chronic pain management. It isn't fun but

it can be managed.

[Guest guest]

, thanks for sharing that information about MS Contin. Could you explain

what effect, if any, the medication has on your sleeping and waking? And

especially on your staying-awake?

[Guest guest]

Chronic pain management...another reason to join this group. Does anyone

else feel like a leper when you try and talk to a doctor about " the pain " ?

At first I thought I was being paranoid, but then I started talking with

other people who experience chronic pain for various reasons, and they feel

the same way.

I would love to be able to ride bikes with my kids, go hiking in the

mountains with my husband. I'd gladly trade my bottle of vicodine for any

amount of time to be able to do normal day to day activities without the

kind of pain that makes me nauseous. I know I'm overly optimistic, but I

still hope that somewhere down the line someone will be able to offer me

some form of relief.

Until then, if it takes pain medication to give me some sense of normalcy,

I'll endure the side ways glances and " Yeah sure...you really look like you

need it " stares. As a side note, I am going to try an acupressure office I

heard about recently....I'll try anything at least once.

Re: Another introduction

Welcome to the group. Well I am on MS Contin. It works alright

although there is still breakthrough pain. I am one of those that

surgery is not expected to help so I can understand how you feel. I

have lots of experience in chronic pain management. It isn't fun but

it can be managed.

[Guest guest]

thanks , Interesting I feel like the Methadone works " alright "

and it may work better if I wasn't pushing myself to try and continue

working. It has been more than a little changelling to take these

strong medications and try to work. I'm wondering if the group has

felt like there Pain Management has been better if they are not

working? I know when my stress level is up and my body is telling me

it's time to slow down,things get really ulgy. I worry about taking

more and stronger meds, what will I have to take 5 and 10 years down

the road? My doctors have even expressed concern about my age 40 and

the long term affects of continued degeneration. Thanks again Carey

> Welcome to the group. Well I am on MS Contin. It works alright

> although there is still breakthrough pain. I am one of those that

> surgery is not expected to help so I can understand how you feel. I

> have lots of experience in chronic pain management. It isn't fun

but

> it can be managed.

>

>

[Guest guest]

I've only noticed a slight difference. I was walking around a Flea Market

today, having a

great time, and my lower back started to really hurt.

My solutions to help at work are:

I telecommute 2 or 3 days a week, so at home I can put the heating pad or

an ice pack on, or just go out to my garden and relax for a few minutes.

I took an ice pack and put it in the break room's frig. I use it off an on.

I also get up a lot and walk around. And around 3pm I take a ten minute

walk around the building.

NB

At 03:08 PM 07/30/2000 +0000, Carey Ravare wrote:

>thanks , Interesting I feel like the Methadone works " alright "

>and it may work better if I wasn't pushing myself to try and continue

>working. It has been more than a little changelling to take these

>strong medications and try to work. I'm wondering if the group has

>felt like there Pain Management has been better if they are not

>working? I know when my stress level is up and my body is telling me

>it's time to slow down,things get really ulgy. I worry about taking

>more and stronger meds, what will I have to take 5 and 10 years down

>the road? My doctors have even expressed concern about my age 40 and

>the long term affects of continued degeneration. Thanks again Carey

>

[Guest guest]

When I was in a car accident, which increased my back pain so much I

couldn't sit or stand for very long, I saw a doctor who told me " I see

cancer patients every day who put up with a lot more pain than you have.

Learn to live with it. "

I was so mad, I said, " Well, at least they can look forward sympathy and

death soon! "

Sounds selfish now, but I just couldn't believe her attitude!

NB

At 11:17 PM 07/29/2000 -0700, you wrote:

>Chronic pain management...another reason to join this group. Does anyone

>else feel like a leper when you try and talk to a doctor about " the pain " ?

>At first I thought I was being paranoid, but then I started talking with

>other people who experience chronic pain for various reasons, and they feel

>the same way.

>

>I would love to be able to ride bikes with my kids, go hiking in the

>mountains with my husband. I'd gladly trade my bottle of vicodine for any

>amount of time to be able to do normal day to day activities without the

>kind of pain that makes me nauseous. I know I'm overly optimistic, but I

>still hope that somewhere down the line someone will be able to offer me

>some form of relief.

>

>Until then, if it takes pain medication to give me some sense of normalcy,

>I'll endure the side ways glances and " Yeah sure...you really look like you

>need it " stares. As a side note, I am going to try an acupressure office I

>heard about recently....I'll try anything at least once.

>

> Re: Another introduction

>

>

>Welcome to the group. Well I am on MS Contin. It works alright

>although there is still breakthrough pain. I am one of those that

>surgery is not expected to help so I can understand how you feel. I

>have lots of experience in chronic pain management. It isn't fun but

>it can be managed.

>

>

>

>

>

>

>

[Guest guest]

NB...

When I stand or walk slowly, I normally increase the amount of lordosis

in my spine. If I walk quickly, my back is usually OK. If I walk

slowly, it's a guaranteed lower back ache. I've begun to try to

remember to bend my knees slightly, which helps a little, when I stand

or walk slowly.

Regards,

[Guest guest]

Dear NB:

I think I know the feeling. I am not sure that I think it is selfish

to think that way. I think it is unfortunate in a way that our

problems are not outwardly visible. People and unfortunately doctors

look at us and because we outwardly look normal think that we can't

possibly be in much pain. My wife and a former nurse friend pointed

something out that I didn't know. Both have said that the pain shows

up in my eyes and they know immediately when I am really in agony.

(Much like I am today unfortunately. Damn cold damp weather.) It is

sad I guess that most people can't see the pain this way because even

though I don't want sympathy I sure could use a bit more respect at

times. However after dealing with the issue for several years I think

that it is unrealistic to expect either doctors or people to

understand. They haven't walked in our shoes and there is no way of

explaining our lives to them. So I just started to accept it and

carry on.

I think doctors become overly sensitized to the whole pain thing.

They see so much of it every day that we are just one more

complaining patient. I like to think that doctors are more than human

in their response sometime but I really don't believe that is true.

The trick is to find a doctor who can respect what you are going

through and then hang on to him or her for dear life.

>

> I was so mad, I said, " Well, at least they can look forward

sympathy and

> death soon! "

>

> Sounds selfish now, but I just couldn't believe her attitude!

>

> NB

[Guest guest]

Welcome, Amber (from a fellow Kentuckian!) I have a daughter 13 and son 11

(soon to be 12). They are nearly fully vaxed : ( I went that route before I

knew any better. I am a former RN who now works a couple of part time jobs

totally unrelated to nursing. I just can't bear the thought of returned to

allopathic methods of dealing with peoples' illnesses. We are now almost

totally a family treated by homeopathy (working on hubby, but he lets me

experiment on him occasionally!)

If I had to do it all over again, our children would be 100% vaccination-free

and treated 100% homeopathically from birth!

Again, welcome (and to the other new members, too!)

Kay in KY

Hi! My name is Amber and I'm a new mother to a beautiful 7 week old girl

named Ivy. She is the first baby of my husband, , and I. We are both

24

years old and have been married for three years and live in Kentucky. We are

into many " alternative " lifestyle choices such as extended breastfeeding,

co-sleeping, unassisted homebirth, and are now researching vaccinations.

Until we

decided what is best for Ivy, we are going what we concider the safe path and

are not vaccinating her. We may end up selectively vaccinating, but for now

I am not giving her anything.

Blessings, Amber

[Guest guest]

Hello, fellow Kentuckians, Amber and Kay :-)

I'm Ninette, a Louisvillian now living in Montreal, Quebec.

I have two sons, 4yo and 1yo. My 4yo had all the standard vax to 18m in

Canada, but will have no boosters afaik. Our 1yo has had NO vax so

far. As I read and learn more, I may eventually be in favor of selective

vax, for instance it's either mumps or tetanus that's sometimes more

dangerous for boys approaching puberty, as I recall.

My gut feeling is that I can't stand the thought of pumping vaccines into

my children's veins, and now that I know what I know, I can't believe I let

it happen to my first child. So far, we are blessed that there appear to

be no ill effects, at least none we are aware of.

So far I've read one book on the vax subject, and intend to read as many

more as I can manage. The one I've read was by Aviva Jill Romm, entitled

Vaccinations: A Thoughtful Parent's Guide: How to Make Safe, Sensible

Decisions about the Risks, Benefits, and Alternatives. She is a midwife

and herbalist. I like the book. I'd place her in the agnostic about

vaccines camp, though she is not 100% anti. But she sheds a good amount of

light on some of the myths from the pro-vax community.

All for now,

Ninette

At 06:44 PM 06/06/2003 -0400, you wrote:

>Welcome, Amber (from a fellow Kentuckian!) I have a daughter 13 and son

>11 (soon to be 12). They are nearly fully vaxed : ( I went that route

>before I knew any better. I am a former RN who now works a couple of part

>time jobs totally unrelated to nursing. I just can't bear the thought of

>returned to allopathic methods of dealing with peoples' illnesses. We are

>now almost totally a family treated by homeopathy (working on hubby, but

>he lets me experiment on him occasionally!)

>

>If I had to do it all over again, our children would be 100%

>vaccination-free and treated 100% homeopathically from birth!

>

>Again, welcome (and to the other new members, too!)

>

>Kay in KY

>> Hi! My name is Amber and I'm a new mother to a beautiful 7 week old girl

>> named Ivy. She is the first baby of my husband, , and I. We

>> are both 24

>> years old and have been married for three years and live in

>> Kentucky. We are

>> into many " alternative " lifestyle choices such as extended breastfeeding,

>> co-sleeping, unassisted homebirth, and are now researching

>> vaccinations. Until we

>> decided what is best for Ivy, we are going what we concider the safe

>> path and

>> are not vaccinating her. We may end up selectively vaccinating, but

>> for now

>> I am not giving her anything.

[Guest guest]

Well I just had to chime in here, since I am in KY too. Thought I would be

the only one in this state to question the medical establishment. Guess I

have company after all. Are you all close to Lex.? I have a 4 year old

vaccine injured son who is recovering.

Sandy

Re: Another introduction

> Welcome, Amber (from a fellow Kentuckian!) I have a daughter 13 and son

11 (soon to be 12). They are nearly fully vaxed : ( I went that route

before I knew any better. I am a former RN who now works a couple of part

time jobs totally unrelated to nursing. I just can't bear the thought of

returned to allopathic methods of dealing with peoples' illnesses. We are

now almost totally a family treated by homeopathy (working on hubby, but he

lets me experiment on him occasionally!)

>

> If I had to do it all over again, our children would be 100%

vaccination-free and treated 100% homeopathically from birth!

>

> Again, welcome (and to the other new members, too!)

>

> Kay in KY

>

> Hi! My name is Amber and I'm a new mother to a beautiful 7 week old

girl

> named Ivy. She is the first baby of my husband, , and I. We are

both 24

> years old and have been married for three years and live in Kentucky.

We are

> into many " alternative " lifestyle choices such as extended

breastfeeding,

> co-sleeping, unassisted homebirth, and are now researching vaccinations.

Until we

> decided what is best for Ivy, we are going what we concider the safe

path and

> are not vaccinating her. We may end up selectively vaccinating, but for

now

> I am not giving her anything.

>

> Blessings, Amber

>

>

>

>

[Guest guest]

Nope, you're not alone here, Sandy. My daughter was born in Lex. We lived

there for a year. Now we live to the north of there (after spending some time

in the deep South of Louisiana).

Well I just had to chime in here, since I am in KY too. Thought I would be

the only one in this state to question the medical establishment. Guess I

have company after all. Are you all close to Lex.? I have a 4 year old

vaccine injured son who is recovering.

Sandy

[Guest guest]

Hi, Sandy! Thank you for you welcome, and thanks to everyone else as well.

I'm glad to have some company. I live in Covington, but will be moving

this fall closer to Northern Kentucky University. My husband is attending

school there.

How was your son injured, if you don't mind my asking?

--Amber

>

> Well I just had to chime in here, since I am in KY too. Thought I would be

> the only one in this state to question the medical establishment. Guess I

> have company after all. Are you all close to Lex.? I have a 4 year old

> vaccine injured son who is recovering.

>

> Sandy

[Guest guest]

Sandy,

Is your son recovering through the use of homeopathy? My son was dx ASD (I now

know he is vaccine injured) at age 3 1/2. He has made some progress with

interventions, diet, supplements, trans. secretin, etc., but nothing like the

gains he has made in the past 2 1/2 months using homeopathy! He is almost eight

and I can say that he is recovering. He has along way to go, but the gains in

speech, pretend play, receptive language, fine and gross motor skills,

relatedness, etc. has been incredible! I hope he continues to heal and one day

say goodbye to all his supports.

Homeopathy is truely amazing. Sometimes I need to pinch myself because it seems

too good to be true.

Lynda Nixon

Re: Another introduction

Hi, Sandy! Thank you for you welcome, and thanks to everyone else as well.

I'm glad to have some company. I live in Covington, but will be moving

this fall closer to Northern Kentucky University. My husband is attending

school there.

How was your son injured, if you don't mind my asking?

--Amber

>

> Well I just had to chime in here, since I am in KY too. Thought I would be

> the only one in this state to question the medical establishment. Guess I

> have company after all. Are you all close to Lex.? I have a 4 year old

> vaccine injured son who is recovering.

>

> Sandy

[Guest guest]

No I don't mind you asking. He lost the ability to speak after the MMR at

the age of 13 months. Could only grunt for the next 14 months. Also had

occasional episodes (probably seizures) of his eyes rolling back for a few

seconds. We stopped all shots after the MMR ( and we wonder if that

prevented additional or more global regressions). We also had refused the

hep b shots so he had less of a mercury load (from thimerosal) than most

infants. Now He has a speech disorder called phonological disorder. He is

recovering his speech - we are pleased with his progress and hopeful for a

full recovery. Does any one know what the long term effects are going to be

for this generation of children (born from aprox 1990 to 2000) who got

loaded up on so much mercury during their infancy?

Re: Another introduction

> Hi, Sandy! Thank you for you welcome, and thanks to everyone else as

well.

> I'm glad to have some company. I live in Covington, but will be

moving

> this fall closer to Northern Kentucky University. My husband is attending

> school there.

>

> How was your son injured, if you don't mind my asking?

>

> --Amber

>

> >

> > Well I just had to chime in here, since I am in KY too. Thought I would

be

> > the only one in this state to question the medical establishment. Guess

I

> > have company after all. Are you all close to Lex.? I have a 4 year old

> > vaccine injured son who is recovering.

> >

> > Sandy

>

>

>

>

[Guest guest]

Welcome Caroline. You're very fortunate to have such an informed mother in law!

I recommend you have your husband read the information about the tetanus vaccine

on Sheri's site: http://www.nccn.net/~wwithin/tetanus.htm

Kay

*******************

Hi everyone - My name is Caroline and I have one son, , born on New

Year's Day this year. My mother in law sent me an article about thimeresal

(sp?) and that's what started my research into vaccines. I read a lot and

decided that wouldn't get any shots based on all the horrible things I've

read about. My husband is in agreement for now, but I think I might still have

some convincing to do so we can avoid shots all together. So far, all the

messages here have been very interesting and I'm so glad and relieved to see how

others are approaching this topic. I think my husband might be considering the

tetnus shot though. Ugh - I hope this doesn't turn into a fight or anything.

Thanks for all the information so far and I hope to keep learning more.

[Guest guest]

Thanks Kay - I got a LOT of links when I joined the list and I'm afraid I

haven't had the time to read through them yet....I'm working on it. Yes, my

mother-in-law has been great but my own mom has been less than thrilled. Anyone

with suggestions on what to do when family members confront you about not

vaccinating? I don't really like confrontation.

Caroline

>

> From: " mkphilpot " <mkphilpot@...>

> Date: 2003/06/08 Sun PM 05:50:17 EDT

> <Vaccinations >

> Subject: Re: Another introduction

>

>

[Guest guest]

Give a copy to them the article from the The TIMES of LONDON about Autism and

Mercury in vaccines. Came out Wednesday of last week. It was a lead article

which means the Times put a spotlight on it...

Re: Another introduction

>

>

[Guest guest]

Do you have a link to the Times article?

>

> From: " Griffiths " <rp46285@...>

> Date: 2003/06/09 Mon PM 03:19:04 EDT

> <Vaccinations >

> Subject: Re: Re: Another introduction

>

>

[Guest guest]

One option is to put the burden of proof on them. Ask them to provide

evidence that vaccines are safe. Maybe when they start digging they'll

find out the truth. Or at least some other versions of it :-)

Ninette

At 03:14 PM 09/06/2003 -0400, you wrote:

>Thanks Kay - I got a LOT of links when I joined the list and I'm afraid I

>haven't had the time to read through them yet....I'm working on it. Yes,

>my mother-in-law has been great but my own mom has been less than

>thrilled. Anyone with suggestions on what to do when family members

>confront you about not vaccinating? I don't really like confrontation.

>

>Caroline

[Guest guest]

Oh and suggest to those who oppose you that they give you proof that vaccines

are safe.

That you want to see a controlled randomised double-blind PEER-REVIEWED study

using 2 month old babies. This is the PROFESSIONAL way to conduct a study.

These studies do NOT exist.

Re: Re: Another introduction

One option is to put the burden of proof on them. Ask them to provide

evidence that vaccines are safe. Maybe when they start digging they'll

find out the truth. Or at least some other versions of it :-)

Ninette

At 03:14 PM 09/06/2003 -0400, you wrote:

>Thanks Kay - I got a LOT of links when I joined the list and I'm afraid I

>haven't had the time to read through them yet....I'm working on it. Yes,

>my mother-in-law has been great but my own mom has been less than

>thrilled. Anyone with suggestions on what to do when family members

>confront you about not vaccinating? I don't really like confrontation.

>

>Caroline

[Guest guest]

I saw a great response the other day on extended breastfeeding issues .......

Thank you for your application, but the position of mommy has already been

filled!

LOL

& unvax'd Liam in IL

[Guest guest]

I don't even tell my parents that we are not vaxing. It's really none of

their business, and I just don't want to get into it.

Same with breastfeeding, homeschooling, taking my kids to the chiropractor,

or talking to a naturopathic doctor~ it's none of their business. I do what

I believe is best for my own kids.

If vaccinations(or any of the other things mentioned above) come up in

conversation, then I don't explain~ I just make it sound like it's the

normal thing to do. Works for me ;-)

Jan

El Paso, TX

[Guest guest]

That's what I just said ... put the burden of proof on them (the pro-vaxers).

Ninette

At 05:33 AM 10/06/2003 +0200, you wrote:

>Oh and suggest to those who oppose you that they give you proof that

>vaccines are safe.

>

>That you want to see a controlled randomised double-blind PEER-REVIEWED

>study using 2 month old babies. This is the PROFESSIONAL way to conduct a

>study.

>

>These studies do NOT exist.

>

>

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

> From: Ninette

> One option is to put the burden of proof on them. Ask them to provide

> evidence that vaccines are safe. Maybe when they start digging they'll

> find out the truth. Or at least some other versions of it :-)

[Guest guest]

At 01:25 AM 3/13/05 -0500, Zavie wrote:

>I complete the group of 3 CMLers that have been banned from posting on the

>CML site. From me you will get tremendous support.

Hi new list friends,

Well, in case you didn't recognize our names, yes, we are the awful

3-some banned from the site. Our intentions were good....but

our efforts failed......and we are ready to move on!

Me.....I was diagnosed over 6 years ago and have been on IM for 5 years.

I am very fortunate to have Dr. Druker as my primary oncologist. I get

an hour of his time every 3 months....he does a quick and painless bmb

and answers every question that I have. Everyone deserves the best

doctor they can find.

I have always been in the medical field, with 30+ years as a physical

therapist, retiring last Spring. I am a 'turtle' or slow responder to IM

and now that they can do mutation testing, we know that I don't have

a mutation but have what they call 'primary resistance'. I have never

been CCR....and don't have a Zavie's Zero # (well, I have one saved for

me).......but I am very stable in blood counts and my cyto of 25% ph+.

I will see Dr. Druker in early April to see if I meet the criteria for a BMS

trial.....I think my body is ready to try something new.

I live in Eugene, Oregon.....and have access to lots of complementary

medicine options, which interests me quite a bit. Because my aim has

been to continue to improve my health, my motto has been to " rock

the boat a little " but " not sink the ship " . Now that I am retired, I finally

have time and energy to push exercise more and I am trying to work

off the Gleevec pounds!

Because W., artist wife and caretaker of BMS Bob is also posting

on this list.....I will sign off as Maui Nanc, my " turtle " name. I picked this

because Maui is a favorite vacation spot and I finding a green sea turtle

when you snorkel is the highlight of the day.

Glad to see some old friends on this list.....and meet some new ones.

and " K " .........Zavie is here is help you lead the cheers!

Maui Nanc