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Trish,

I really understand how you feel. I've never seen a naturopath, but I would

love to. The major obstacle for me is financial. When insurance covers all

the costs of the physician and the medicines, it is difficult to put out the

money required to pay the naturopath and all the herbs and vitamins that go

along with it. Many years ago before having internet resources, I was

seeing an uncertified person and taking tons of things recommended. I

always wonder if I did myself harm because I didn't take conventional RA

meds. I read everything I can find and try to eat healthy, and supplement

with things that I feel comfortable with. Maybe you should ask your doctor

how he feels about MSM or Bosweilla. They are both antinflammatories that

people are raving about. I've posted links to them in the past, but I will

find them and post them again for anyone interested.

I found a surprise when I went to the food store this week. They had soy

milk called Silk half price, so I decided to try it. There has been a lot

of research on soy, and it has been proven to help prevent breast and

prostate cancer and reverse osteoporosis. After the disgusting article I

read about hormones in milk and the FDA/Montsano scam, I am glad to have a

healthy alternative. They " say " the soy milk is made from organic soy beans

that aren't genetically modified. It is hard to know what to believe and

who to trust.

For now I keep reading and trying to live as organically as possible. I

surely understand your frustrations, because it is hard to deal with these

meds that have such rotten side effects, or don't work. I believe the

answer is within our own bodies, and hopefully we will find it.

a

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

From: Trish Goodvin <tgoodvin@...>

RA-Support < egroups>

Sent: Tuesday, July 11, 2000 9:04 PM

Subject: [ ] Question?

> Hi Everyone,

> I was wondering if anyone has seen a Naturopath specifically for RA. The

reason I ask is I am

> becoming very frustrated by the standard drug therapy, which I am not even

sure is working. I

> have had a huge knot below my knuckle on my little finger. It was filled

with fluids which we

> are treating with water pills, but the knot hurts very much and some days

the only way I can

> even use my hand is to take vicodin. Called RD today and told him I did

not want to go back

> on MTX. The options he gave me were, Go back on oral gold (which I am not

sure ever worked),

> have him inject it, or go to a hand surgeon. Well, I am not sure I like

any of the options.

> I have been on just about everything and I really believe the only drug

that helps me is

> prednisone, which I really do not want to take forever either. I also

take voltarin and

> Enbrel. I guess I am at a point where I am frustrated and feel I need to

start looking at new

> options. I will not stop any drugs without my RD knowing. He is a great

DR and I have been

> with him since the beginning. After 6 years I am very disillusioned with

drug therapy. if

> anyone knows anything about Naturopaths and RA I would love to hear about

it!!!

> Thanks for listening!!!

> Trish

>

> __________________________________________________

>

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Guest guest

Trish,

I go to a Plastic Surgeon who specailizes in hands. He is great. I don't

think it would hurt for you to go have a consult with a hand surgeon. If

right away the doctor wants to perform surgery, get another opinion. My

doctor has been great and is helping me put off surgery until all other

resources are exhausted. Have you ever had cortisone inserted directly to

the knot or knuckle? Yes, it hurts like you know what, but for me, it works.

Judy

At 06:04 PM 7/11/2000 -0700, you wrote:

>Hi Everyone,

>I was wondering if anyone has seen a Naturopath specifically for RA. The

reason I ask is I am

>becoming very frustrated by the standard drug therapy, which I am not even

sure is working. I

>have had a huge knot below my knuckle on my little finger. It was filled

with fluids which we

>are treating with water pills, but the knot hurts very much and some days

the only way I can

>even use my hand is to take vicodin. Called RD today and told him I did

not want to go back

>on MTX. The options he gave me were, Go back on oral gold (which I am not

sure ever worked),

>have him inject it, or go to a hand surgeon. Well, I am not sure I like

any of the options.

>I have been on just about everything and I really believe the only drug

that helps me is

>prednisone, which I really do not want to take forever either. I also

take voltarin and

>Enbrel. I guess I am at a point where I am frustrated and feel I need to

start looking at new

>options. I will not stop any drugs without my RD knowing. He is a great

DR and I have been

>with him since the beginning. After 6 years I am very disillusioned with

drug therapy. if

>anyone knows anything about Naturopaths and RA I would love to hear about

it!!!

>Thanks for listening!!!

>Trish

>

>__________________________________________________

>

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Guest guest

Thanks a,

One of the great things about this list is the feeling you get when someone

compassionatly

understands. I think we are starting to see more and more western medical models

merge with

more of the eastern medical philosophys. I agree with you that the answers lie

within. I got

a good book at he library put out by the Arthritis Foundation called " A guide to

alternative

therapies " . I like it because it takes an approach which is complimentary, in

that both

models have their merit. I by no means feel the tremendous break throughs in

modern medicne

should not be praised, but I also believe, like you, that doing everything we

can beyond that

is equally important. Anyway it is a very good book and worth taking a look at.

Meanwhile I

will ponder my next move. Thanks for the links and thanks for listening!!!

Trish

--- a <aA@...> wrote:

> Trish,

> I really understand how you feel. I've never seen a naturopath, but I would

> love to. The major obstacle for me is financial. When insurance covers all

> the costs of the physician and the medicines, it is difficult to put out the

> money required to pay the naturopath and all the herbs and vitamins that go

> along with it. Many years ago before having internet resources, I was

> seeing an uncertified person and taking tons of things recommended. I

> always wonder if I did myself harm because I didn't take conventional RA

> meds. I read everything I can find and try to eat healthy, and supplement

> with things that I feel comfortable with. Maybe you should ask your doctor

> how he feels about MSM or Bosweilla. They are both antinflammatories that

> people are raving about. I've posted links to them in the past, but I will

> find them and post them again for anyone interested.

>

> I found a surprise when I went to the food store this week. They had soy

> milk called Silk half price, so I decided to try it. There has been a lot

> of research on soy, and it has been proven to help prevent breast and

> prostate cancer and reverse osteoporosis. After the disgusting article I

> read about hormones in milk and the FDA/Montsano scam, I am glad to have a

> healthy alternative. They " say " the soy milk is made from organic soy beans

> that aren't genetically modified. It is hard to know what to believe and

> who to trust.

>

> For now I keep reading and trying to live as organically as possible. I

> surely understand your frustrations, because it is hard to deal with these

> meds that have such rotten side effects, or don't work. I believe the

> answer is within our own bodies, and hopefully we will find it.

>

> a

>

>

>

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

> From: Trish Goodvin <tgoodvin@...>

> RA-Support < egroups>

> Sent: Tuesday, July 11, 2000 9:04 PM

> Subject: [ ] Question?

>

>

> > Hi Everyone,

> > I was wondering if anyone has seen a Naturopath specifically for RA. The

> reason I ask is I am

> > becoming very frustrated by the standard drug therapy, which I am not even

> sure is working. I

> > have had a huge knot below my knuckle on my little finger. It was filled

> with fluids which we

> > are treating with water pills, but the knot hurts very much and some days

> the only way I can

> > even use my hand is to take vicodin. Called RD today and told him I did

> not want to go back

> > on MTX. The options he gave me were, Go back on oral gold (which I am not

> sure ever worked),

> > have him inject it, or go to a hand surgeon. Well, I am not sure I like

> any of the options.

> > I have been on just about everything and I really believe the only drug

> that helps me is

> > prednisone, which I really do not want to take forever either. I also

> take voltarin and

> > Enbrel. I guess I am at a point where I am frustrated and feel I need to

> start looking at new

> > options. I will not stop any drugs without my RD knowing. He is a great

> DR and I have been

> > with him since the beginning. After 6 years I am very disillusioned with

> drug therapy. if

> > anyone knows anything about Naturopaths and RA I would love to hear about

> it!!!

> > Thanks for listening!!!

> > Trish

> >

> > __________________________________________________

> >

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Guest guest

Hi Judy,

Thanks for your encouragement!! I guess I am a bit afraid of going to a

surgeon. Good advice

though about them working with you and not just taking out the old knife. I did

have a

cortisone shot in the wrist of the same hand (right) and it hurt like he**!!!!

I am not sure I can stay on the water pills they really make me nauseous. I

have a month to

think about my options and maybe a hand surgeon would be a good one. Thanks

Judy!!!

How are you feeling? I know you understand the frustration of not being able to

use your

hands. Its the pitts!!

Trish

--- Judy <rrjsen@...> wrote:

> Trish,

>

> I go to a Plastic Surgeon who specailizes in hands. He is great. I don't

> think it would hurt for you to go have a consult with a hand surgeon. If

> right away the doctor wants to perform surgery, get another opinion. My

> doctor has been great and is helping me put off surgery until all other

> resources are exhausted. Have you ever had cortisone inserted directly to

> the knot or knuckle? Yes, it hurts like you know what, but for me, it works..

>

> Judy

>

>

> At 06:04 PM 7/11/2000 -0700, you wrote:

> >Hi Everyone,

> >I was wondering if anyone has seen a Naturopath specifically for RA. The

> reason I ask is I am

> >becoming very frustrated by the standard drug therapy, which I am not even

> sure is working. I

> >have had a huge knot below my knuckle on my little finger. It was filled

> with fluids which we

> >are treating with water pills, but the knot hurts very much and some days

> the only way I can

> >even use my hand is to take vicodin. Called RD today and told him I did

> not want to go back

> >on MTX. The options he gave me were, Go back on oral gold (which I am not

> sure ever worked),

> >have him inject it, or go to a hand surgeon. Well, I am not sure I like

> any of the options.

> >I have been on just about everything and I really believe the only drug

> that helps me is

> >prednisone, which I really do not want to take forever either. I also

> take voltarin and

> >Enbrel. I guess I am at a point where I am frustrated and feel I need to

> start looking at new

> >options. I will not stop any drugs without my RD knowing. He is a great

> DR and I have been

> >with him since the beginning. After 6 years I am very disillusioned with

> drug therapy. if

> >anyone knows anything about Naturopaths and RA I would love to hear about

> it!!!

> >Thanks for listening!!!

> >Trish

> >

> >__________________________________________________

> >

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Guest guest

Alternative medicine is being integrated with traditional, and I think we

will benefit from it. Remember when chiropractors were called quacks?

Acupuncture was dangerous? Herbs were witchcraft?

I am glad that these things are now acceptable. When my sed rate went down

so low my RD said keep taking the MSM, it must be working! Do you have a

naturopath in your area? I'd like to try one, but I won't stop taking my

prescribed meds. I can't afford to loose any more joints.

Yes, we sure do understand each others feelings.

a

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

From: Trish Goodvin <tgoodvin@...>

< egroups>

Sent: Wednesday, July 12, 2000 2:30 PM

Subject: Re: [ ] Question?

> Thanks a,

> One of the great things about this list is the feeling you get when

someone compassionatly

> understands. I think we are starting to see more and more western medical

models merge with

> more of the eastern medical philosophys. I agree with you that the

answers lie within. I got

> a good book at he library put out by the Arthritis Foundation called " A

guide to alternative

> therapies " . I like it because it takes an approach which is

complimentary, in that both

> models have their merit. I by no means feel the tremendous break throughs

in modern medicne

> should not be praised, but I also believe, like you, that doing everything

we can beyond that

> is equally important. Anyway it is a very good book and worth taking a

look at. Meanwhile I

> will ponder my next move. Thanks for the links and thanks for

listening!!!

> Trish

> --- a <aA@...> wrote:

> > Trish,

> > I really understand how you feel. I've never seen a naturopath, but I

would

> > love to. The major obstacle for me is financial. When insurance covers

all

> > the costs of the physician and the medicines, it is difficult to put out

the

> > money required to pay the naturopath and all the herbs and vitamins that

go

> > along with it. Many years ago before having internet resources, I was

> > seeing an uncertified person and taking tons of things recommended. I

> > always wonder if I did myself harm because I didn't take conventional RA

> > meds. I read everything I can find and try to eat healthy, and

supplement

> > with things that I feel comfortable with. Maybe you should ask your

doctor

> > how he feels about MSM or Bosweilla. They are both antinflammatories

that

> > people are raving about. I've posted links to them in the past, but I

will

> > find them and post them again for anyone interested.

> >

> > I found a surprise when I went to the food store this week. They had

soy

> > milk called Silk half price, so I decided to try it. There has been a

lot

> > of research on soy, and it has been proven to help prevent breast and

> > prostate cancer and reverse osteoporosis. After the disgusting article

I

> > read about hormones in milk and the FDA/Montsano scam, I am glad to have

a

> > healthy alternative. They " say " the soy milk is made from organic soy

beans

> > that aren't genetically modified. It is hard to know what to believe

and

> > who to trust.

> >

> > For now I keep reading and trying to live as organically as possible.

I

> > surely understand your frustrations, because it is hard to deal with

these

> > meds that have such rotten side effects, or don't work. I believe the

> > answer is within our own bodies, and hopefully we will find it.

> >

> > a

> >

> >

> >

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

> > From: Trish Goodvin <tgoodvin@...>

> > RA-Support < egroups>

> > Sent: Tuesday, July 11, 2000 9:04 PM

> > Subject: [ ] Question?

> >

> >

> > > Hi Everyone,

> > > I was wondering if anyone has seen a Naturopath specifically for RA.

The

> > reason I ask is I am

> > > becoming very frustrated by the standard drug therapy, which I am not

even

> > sure is working. I

> > > have had a huge knot below my knuckle on my little finger. It was

filled

> > with fluids which we

> > > are treating with water pills, but the knot hurts very much and some

days

> > the only way I can

> > > even use my hand is to take vicodin. Called RD today and told him I

did

> > not want to go back

> > > on MTX. The options he gave me were, Go back on oral gold (which I am

not

> > sure ever worked),

> > > have him inject it, or go to a hand surgeon. Well, I am not sure I

like

> > any of the options.

> > > I have been on just about everything and I really believe the only

drug

> > that helps me is

> > > prednisone, which I really do not want to take forever either. I also

> > take voltarin and

> > > Enbrel. I guess I am at a point where I am frustrated and feel I need

to

> > start looking at new

> > > options. I will not stop any drugs without my RD knowing. He is a

great

> > DR and I have been

> > > with him since the beginning. After 6 years I am very disillusioned

with

> > drug therapy. if

> > > anyone knows anything about Naturopaths and RA I would love to hear

about

> > it!!!

> > > Thanks for listening!!!

> > > Trish

> > >

> > > __________________________________________________

> > >

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  • 6 months later...

Lamar here,

That was possibly when I was discussing what one person described as " CMT-

level 1AX "

CMT- 1 is demyelinative and autosomally dominant and has subtypes of CMT-1A

and CMT 1-B

CMTX is usually axonal and always sex linked

CMTX has four subtypes currently known

CMTX-Type 1 ,

CMTX-Type 2,

CMTX-Type 3,

and " Cowchock syndrome "

So there is a CMTX-Type-1, but no CMT1X, or CMT-level 1-AX in the most

comprehensive list I have seen which is at

http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html#IX

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

From: ktbugg54@...

egroups

Sent: Friday, January 19, 2001 09:40 AM

Subject: [] question?

Did I dream it or did someone say a few weeks ago that there is not CMTlX?

eGroups Sponsor

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In a message dated 1/19/2001 2:13:28 PM Eastern Standard Time, lls@...

writes:

<<

So there is a CMTX-Type-1, but no CMT1X, or CMT-level 1-AX in the most

comprehensive list I have seen which is at

http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html#IX >>

Thanks Lamar

The reason I asked is I was looking through my CMTA news letters and it

mentions CMT1X, also on the athena website it is mentioned. Is this what CMTX

Type 1 is?

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Thanks,

This is referring to the same genetic anomaly. I do not know why it is

listed that way. In every form of scientific nomenclature the

classification goes from the larger group to the smaller group. It is first

CMT--and then sex linked, and then a particular type of sex linked. That

would be a good question for Athena. In listing it as CMT1X, it is

indicating that it is CMT type 1 which is sex linked. I will check further,

but the Athena site is the only one I have seen with that.

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

From: ktbugg54@...

egroups

Sent: Saturday, January 20, 2001 07:55 AM

Subject: Re: [] question?

In a message dated 1/19/2001 2:13:28 PM Eastern Standard Time,

lls@...

writes:

<<

So there is a CMTX-Type-1, but no CMT1X, or CMT-level 1-AX in the most

comprehensive list I have seen which is at

http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html#IX >>

Thanks Lamar

The reason I asked is I was looking through my CMTA news letters and it

mentions CMT1X, also on the athena website it is mentioned. Is this what

CMTX

Type 1 is?

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  • 4 months later...
Guest guest

,

I don't know how it is with everyone but i can tell you about . In july

of 96 we moved from FL back to vermont to be with my mom after my brother

died. We lived there for a about 14 months and i decided that we had to move

back to FL for jesse's sake. In that 14 months his left wrist went from about

90% normal to having less then 10% range of motion. He was taking Naporxen

and Mtx by injection and steroids off an on. His wrist bone looked like they

were over lapping and he was always in pain. He started the Enbrel in April

of 2000 and has gained back about 75% of his range of motion and the swelling

has gone down. I was very surprised that he gained so much back but i also

think that the combination of meds that he takes has given him his childhood.

He isn't at 100% and i don't expect that he ever will and i think that

because he is a child is why he was able to increase his ability with the

meds.

shelly

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Guest guest

HI all, I am feeling pretty good today....had my lesson in infusing my ABs in

my PIC line. Talked with my surgeon today ...he said all the labs came back

neg for infection but the mess was right up to the mesh lining so that is why

I am on IV ABs....and asked how I was feeling.......I am so much better...and

I have a nurse coming to change dressing and keep an eye on drain every day

too. So now I just need to catch up on sleep...slept pretty good last night

......only up and down couple times. Still emotionally exhausted ...I think I

finally started to really think about all this crap and started having my lil

reality check on mortality......but I just need to cry about it for a few

days and I'll be fine I think....get it out of my system...well, You all have

a nice weekend......painfree and joyful.......Judy in AZ

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Guest guest

,

I don't mean to scare you but, to be honest I don't remember a day since

before my RA started having a day with no pain. That's not to say that I

don't have my good days, but the pain is always there just sometimes a little

more in the back ground. You get used to it. You will build up a pain

tolerance. I think that most of us with this and similar disease's build up

a very high pain tolerance. I hope you get some relief soon.

Have you tried rice socks? Heating pads, ice packs, switching between cold

and heat? What about my favorite a paraffin bath? It's hot wax, I love

mine. Tery

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Guest guest

,

I understand totally. The pain is amazing. I told a friend tat I don't

even remember being healthy and this has only been 2 year with the RA but

longer for other stuff. Right now I really want to take a hot bath in our

whirlpool tub, it feels so goo but then I have to kneel to get out and that

almost makes me pass out. So it's a tradeoff. The prednisone will work,

did for me as long as it was over 15 mgs per day but I won't take it. I'm

overweight and have just lost 40 lbs. and the side effects of prednisone are

just not worth it. Besides my surgeon won't let me.

Don't know about how long for permanent damage but I have it in my left knee

and hip after 2 years, that's with about a year on enbrel or remicade with

are suppose to stop damage. Go figure!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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Guest guest

Judy,

Cry all you need to, we all have a cybershoulder here just for you. It is

best to let it all out or you will need another support group...LOL......Just

be a good girl for the visiting nurse or you will have no one to come over &

play with . Hang in there honey, we are pulling & praying for ya. You are

still one tough broad.........

Love ya, my friend

Gentle, tender, no more surgery angel hugs,

Debs

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Guest guest

This may sound strange but over the last yr i have noticed something.

feels really good more then half the time which is great and so wonderful but

when he does go into a major flare he really whines alot. I mean i understand

why he does but i was trying to figure out if it was from feeling so great to

feeling bad again or if it was from not always being the center of attention

or if it was from puberty or maybe all of the above. I wanted to what ya'll

thought?

shelly

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Guest guest

,

I have 3 daughters so I can't help you there, we have our own problems with

hormones alone!!!!!!!My kids have no excuses to whine...........

Hang in there & have a safe holiday weekend.....

Debs

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Guest guest

,

I wish it was three month from now so I would know if the MTX worked.

It is going to be a long haul if this is how I am going to feel until

then. I pray this works.

I am so glad that is able to play again. It just breaks my

heart when Children are hit by these diceases. They also teach me to

be grateful and strong. They are such troopers.

> ,

>

> I don't know how it is with everyone but i can tell you about .

In july

> of 96 we moved from FL back to vermont to be with my mom after my

brother

> died. We lived there for a about 14 months and i decided that we had

to move

> back to FL for jesse's sake. In that 14 months his left wrist went

from about

> 90% normal to having less then 10% range of motion. He was taking

Naporxen

> and Mtx by injection and steroids off an on. His wrist bone looked

like they

> were over lapping and he was always in pain. He started the Enbrel

in April

> of 2000 and has gained back about 75% of his range of motion and the

swelling

> has gone down. I was very surprised that he gained so much back but

i also

> think that the combination of meds that he takes has given him his

childhood.

> He isn't at 100% and i don't expect that he ever will and i think

that

> because he is a child is why he was able to increase his ability

with the

> meds.

>

> shelly

>

>

> [Non-text portions of this message ha

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Guest guest

I know what you mean about getting out of the bathtub. LOL If I had a

lift to get me out that would be great!! I have a huge jacuzzi bath

tub that I hardley ever use cause it so big it takes forever to fill

up and is hard to get out of.

I am only on 10 mg of pred. Maybe she needs to up it or give me some

pain meds.

> ,

> I understand totally. The pain is amazing. I told a friend tat I

don't

> even remember being healthy and this has only been 2 year with the

RA but

> longer for other stuff. Right now I really want to take a hot bath

in our

> whirlpool tub, it feels so goo but then I have to kneel to get out

and that

> almost makes me pass out. So it's a tradeoff. The prednisone will

work,

> did for me as long as it was over 15 mgs per day but I won't take

it. I'm

> overweight and have just lost 40 lbs. and the side effects of

prednisone are

> just not worth it. Besides my surgeon won't let me.

> Don't know about how long for permanent damage but I have it in my

left knee

> and hip after 2 years, that's with about a year on enbrel or

remicade with

> are suppose to stop damage. Go figure!

>

> Temple

> Kuddle Kritters Farm

> 3 Fox Haven Way

> Chelmsford, MA 01824

>

> dat2352@m...

> http://www.homestead.com/kuddlekrittersfarm/index.html

> http://www.homestead.com/kuddlekraft/index.html

> http://www.homestead.com/kuddlekrittersdairygoa

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Guest guest

Tery, Thanks. There are some suggestions here that I have not tried

yet. I am willing to rty anything.

> ,

> I don't mean to scare you but, to be honest I don't remember a day

since

> before my RA started having a day with no pain. That's not to say

that I

> don't have my good days, but the pain is always there just sometimes

a little

> more in the back ground. You get used to it. You will build up a

pain

> tolerance. I think that most of us with this and similar disease's

build up

> a very high pain tolerance. I hope you get some relief soon.

>

> Have you tried rice socks? Heating pads, ice packs, switching

between cold

> and heat? What about my favorite a paraffin bath? It's hot wax, I

love

> min

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Well the bath felt good but the pain in my knees getting out was amazing and

I just couldn't face the staircase after so went to bed at 8 PM. Today I

have to have my hair done and go to Costco (think they have wheelchairs!)

with hubby of course. I'm dreading it at the moment but tomorrow we are

going to my parents' 50th wedding Anniversary party in NY. Driving down in

AM and back on Monday PM because we can't leave the animals long. Kids went

today. My sister is doing all the work for the after party party and I feel

guilty so insisted on bringing relish trays and desserts. Can't face making

any thus the trip to Costco.

We looked into a Hot tub spa which would really feel good and much easier to

get in and out of but don't have the money. Any way of manipulating

insurance?

I got approval for a wheelchair from the insurance yesterday-up to $1500.

Just checked at Invacare site-basic costs about $850. Now need doctor to

order it.

I'm not on any meds at the moment till I start the Enbrel again. The Dr.

went away early so couldn't get the prescription. The pharmacy has to order

it so it will be awhile I guess.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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Judy,

I've had a pic line for ABs twice already and the biggest pain in the neck

is how long it takes. I had vancomycin and it took 2 hours each time. I

always did my own. They would come to do vitals and blood work once a week.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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, we think it's because he felt so good and felt " like one of the

other kids " ,

so when he goes into a flare he feels so bad and feels so different from the

others.

Just our opinion whatever that's worth LOL

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

From: <12341234@...>

< >

Sent: Saturday, May 26, 2001 12:29 AM

Subject: Re: [ ] Re: Question?

> This may sound strange but over the last yr i have noticed something.

> feels really good more then half the time which is great and so wonderful

but

> when he does go into a major flare he really whines alot. I mean i

understand

> why he does but i was trying to figure out if it was from feeling so great

to

> feeling bad again or if it was from not always being the center of

attention

> or if it was from puberty or maybe all of the above. I wanted to what

ya'll

> thought?

>

> shelly

>

>

>

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I took a nice long hot bath with candles last night an it was very

relaxing. But getting out hurt. I am glad to hear they approved your

Wheel Chair. Hopfully that will help some. Take it easy on your trip

and good luck with Enbrel

> Well the bath felt good but the pain in my knees getting out was

amazing and

> I just couldn't face the staircase after so went to bed at 8 PM.

Today I

> have to have my hair done and go to Costco (think they have

wheelchairs!)

> with hubby of course. I'm dreading it at the moment but tomorrow we

are

> going to my parents' 50th wedding Anniversary party in NY. Driving

down in

> AM and back on Monday PM because we can't leave the animals long.

Kids went

> today. My sister is doing all the work for the after party party

and I feel

> guilty so insisted on bringing relish trays and desserts. Can't

face making

> any thus the trip to Costco.

> We looked into a Hot tub spa which would really feel good and much

easier to

> get in and out of but don't have the money. Any way of manipulating

> insurance?

> I got approval for a wheelchair from the insurance yesterday-up to

$1500.

> Just checked at Invacare site-basic costs about $850. Now need

doctor to

> order it.

> I'm not on any meds at the moment till I start the Enbrel again.

The Dr.

> went away early so couldn't get the prescription. The pharmacy has

to order

> it so it will be awhile I guess.

>

> Temple

> Kuddle Kritters Farm

> 3 Fox Haven Way

> Chelmsford, MA 01824

>

> dat2352@m...

> http://www.homestead.com/kuddlekrittersfarm/index.html

> http://www.homestead.com/kuddlekraft/index.html

> http://www.homestead.com/kuddlekrittersdairy

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Rainy,

Don't want to rain on anyone's parade but almost all the damage to my left

knee was while on remicade or enbrel. Guess it depends on the person!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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Guest guest

From the time I discovered my right knee swollen, in spring, to about

September all my joints became active fast. Within just one year every joint

had it and damage had began right away. This is why aggressive treatment is

extremely important. By the 2nd year I was in lots of pain and my hips hurt

terribly. With massive swelling in my hands and knees and ankles.

~Rainy

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

Sent: Friday, May 25, 2001 3:07 PM

Subject: [ ] Question?

> How long, if untreated, before damage starts to appear. Lets say

> best case/worst case. How long do I have? To me it seems like I get

> worse and worse every day. I'm scared. But I can't afford to get

> all worked up about it. When I stressed or over worked it seems to

> get worse. But it is never better. I can't remember the last time I

> had a no flare day.

>

>

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