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Hi everybody. I would like to introduce myself. My name is and I was

diagnosed with RA about 4-1/2 years ago but obviously had it longer than

that. I'm 37 now. I'm finally seeing a rheumatologist for the first time next

week. I am one of those who just blew it off until I felt very lousy, which

I'm at that point now. The joint pains are horrible. I've been doing a lot of

research on the web re RA drugs and have settled on Celebrex or Enbrel. I'm a

medical transcriptionist by trade. I hate pills too as every single side

effect in the world, even down to something simple like amoxicillin, I

experience them. I'm very afraid of side effects as I've got to function.

I've got a business to run and 4 kids to raise. I started to get into the rut

of not wanting to exercise because I felt so lousy but once I did, I was much

better. I also dropped 35 pounds because that's the first thing that I will

be told to do and my joints don't need the extra weight.

I guess I'm just coming here to meet other RA sufferers because nobody really

knows what it's like if you tell them it's going to rain in 7 days and it's

95 outside.

Thanks for listening.

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Hi , Pam, Holly to our group :)

~ Esther ~ JRAage 8.....23 years

~ Carol, (Mom, my typist)

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

From: <CCouttsRMT@...>

< egroups>

Sent: Wednesday, August 23, 2000 4:58 PM

Subject: Re: [ ] Introduction

> Hi everybody. I would like to introduce myself. My name is and I was

> diagnosed with RA about 4-1/2 years ago but obviously had it longer than

> that. I'm 37 now. I'm finally seeing a rheumatologist for the first time

next

> week. I am one of those who just blew it off until I felt very lousy,

which

> I'm at that point now. The joint pains are horrible. I've been doing a lot

of

> research on the web re RA drugs and have settled on Celebrex or Enbrel.

I'm a

> medical transcriptionist by trade. I hate pills too as every single side

> effect in the world, even down to something simple like amoxicillin, I

> experience them. I'm very afraid of side effects as I've got to function.

> I've got a business to run and 4 kids to raise. I started to get into the

rut

> of not wanting to exercise because I felt so lousy but once I did, I was

much

> better. I also dropped 35 pounds because that's the first thing that I

will

> be told to do and my joints don't need the extra weight.

>

> I guess I'm just coming here to meet other RA sufferers because nobody

really

> knows what it's like if you tell them it's going to rain in 7 days and

it's

> 95 outside.

>

> Thanks for listening.

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

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Hi . Welcome from another newbie. I'm also one of those people

that has the side effects that .01% of the population will get. *G*

When I worked at a clinic, the docs used to tease me and tell me that

they were going to use me as a test subject.

Anyway, welcome.

Jenna

FREE SPIRIT - Starlight Writers Publications

THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award;

WordWeaving Award of Excellance

THE GREEN PUMPKIN - CrossroadsPub.com; furt Award Nominee

Homepage: www.geocities.com/jennakayfrancis

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

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Welcome ,

You'll find plenty of people here that understand weather predictions.

I hope your doctor can get you on meds that will make you feel better.

It is difficult for us to exercise when we are in so much pain. Yes, it is

proven that it helps, but it is like pouring salt in a wound. I try to do

range of motion exercised every day. Water exercises are the best for

arthritics. If

you have a local chapter of the Arthritis Association, they may have classes

in your area. Let us know how your visit goes and what drugs you decide to

try.

a

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

From: <CCouttsRMT@...>

< egroups>

Sent: Wednesday, August 23, 2000 4:58 PM

Subject: Re: [ ] Introduction

> Hi everybody. I would like to introduce myself. My name is and I was

> diagnosed with RA about 4-1/2 years ago but obviously had it longer than

> that. I'm 37 now. I'm finally seeing a rheumatologist for the first time

next

> week. I am one of those who just blew it off until I felt very lousy,

which

> I'm at that point now. The joint pains are horrible. I've been doing a lot

of

> research on the web re RA drugs and have settled on Celebrex or Enbrel.

I'm a

> medical transcriptionist by trade. I hate pills too as every single side

> effect in the world, even down to something simple like amoxicillin, I

> experience them. I'm very afraid of side effects as I've got to function.

> I've got a business to run and 4 kids to raise. I started to get into the

rut

> of not wanting to exercise because I felt so lousy but once I did, I was

much

> better. I also dropped 35 pounds because that's the first thing that I

will

> be told to do and my joints don't need the extra weight.

>

> I guess I'm just coming here to meet other RA sufferers because nobody

really

> knows what it's like if you tell them it's going to rain in 7 days and

it's

> 95 outside.

>

> Thanks for listening.

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

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  • 4 weeks later...

Welcome, Sam!

Hope you can find the information, support, and laughs that you need here. I

believe you can. This is an extraordinary group.

Looking forward to hearing more from you soon.

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

From: " sam owen " <sam.owen1@...>

< egroups>

Sent: Friday, September 22, 2000 7:43 PM

Subject: [ ] Introduction

> Hi all,

> My name is Owen and i live in Norfolk/United Kingdom. I am 28 and

> have been treated since January for RSI. They now think that i have RA and

> have taken blood tests this week, it also runs in the family.

> Sam

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Welcome , You are so young to have RA. We all know that it

knows no age limit. You will like our group. They make us laugh

when we're down, understand our pain and support us no matter what.

Welcome again.

Regards,

Sylvia

> Hi all,

> My name is Owen and i live in Norfolk/United Kingdom. I am

28 and

> have been treated since January for RSI. They now think that i have

RA and

> have taken blood tests this week, it also runs in the family.

> Sam

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  • 7 months later...
Guest guest

and others

Lamar here,

Great pages. You are both a beautiful and talented person. I hope your

CMT never progresses to the point you can not do the things you mention, but

unfortunately it often does. My suggestions are a one story wheelchair

assessable home. All doors 36 inches wide. All halls wide enough to

negotiate a turn. No steps or a ramp. Large baths to accommodate a chair

or lift. A huge shower is often better than a tub. If you are having the

home built, have light switches lower than standard and electrical outlets

higher so they are easy to reach from a chair. In the kitchen an oven with

a side swing door rather than one that lets down and wall mounted at a level

to reach from chair is ideal. Use care in kitchen design to provide for an

easy flow. You do not want to move a chair a dozen times to get something

from the refrigerator to the counter, sink, or stove. High cabinets are not

good for people in a chair, nor are low cabinets filled with things unless

they have slide out sections. Plenty of drawers are the best. See what

you can reach from your chair and go from there. In baths and kitchens open

counters like a table are ideal, you can roll up to them. It is very

difficult to reach a kitchen sink or lavatory that is enclosed in a cabinet

or vanity. Pedestal sinks in a bath are both attractive and practical.

In my home I have large drawers in the bottom of closets, and lower than

standard rods to hang clothing from. In the event that your hands are

affected in the future, it is nice to have levers instead of knobs on

faucets and doors. It is much cheaper to put them there initially than to

replace down the line if essential.

Always remember traffic flow patterns. Use your chair to get an idea. It

is nice to have an entrance from where you park a car into or near the

kitchen. When you bring in groceries or anything else you have a place to

place them and work from there. Remember to allow area where you park for a

vehicle with a lift if ever needed.

An often overlooked area is the laundry. A dryer with a side swinging door

is better than one where the door lets down. A washer with a front door is

better than one that opens on top for someone in a chair. Have the laundry

near the baths and bedrooms and not on the other end of the house. Have

shelves and a place to hang hanging items at hand. (I have a rod suspended

from the ceiling that I can reach) If a chair becomes essential you have to

get dirty clothing from the bedroom and bath to the laundry area and clean

items back. With a laundry stuck in a utility room far removed from these

areas that can mean many trips in a wheelchair.

You using a chair at times now gives you an advantage. Go through your

daily routine ENTIRELY from it for a day and see what areas and tasks

present problems. Then use your artistic talents to think of ways things

could be changed to make the difficult task easier. Can you prepare a meal,

use the bath, make the bed, do laundry, etc. from it? These are the areas

that often present problems. You may never need all these things, and I

sincerely hope you do not, but IF you do you will be glad you looked ahead.

Even people without CMT usually encounter problems in a home as they age.

The two level home that was ideal in the 30's becomes a curse at 75 for

many.

As for medical bills. If you do not have insurance--get it. If you can get

group insurance even better. Since you are self employed you probably need

to do some extensive retirement planning. What would happen if you could no

longer sculpt? It is good that you have an able partner, but a person is

not wise to think that partner will always be there. Hopefully they will.

One final suggestion. If you do not have it, find things you enjoy that

require less physical ability and dexterity. By all means do not give up

the things you love while you can do them. I made the mistake of using

physical activity as my main stress reliever, and it has been hard finding

things that worked.

I can look at my own life. At 34, I could do basically anything. I climbed

the Washington Monument, I did cave diving, I climbed trees to install

antennas 100 ft up. I dug a 225 ft ditch 6 feet deep with a pick and

shovel. I cleared over an acre to add to my lawn from thick woods and had a

small garden about half the size of a football field. I was married and

had a full time job. I was continuing my education to advance myself. A

hobby was doing lapidary and minute jewelry work and calligraphy.

At 49, I was divorced, alone, had an AFO, needed a cane to walk. I had to

retire from my job as an RN with psychiatric certification on 100%

disability. I had frequent falls. Thankfully I had worked where I was able

to draw a decent retirement after the 30 years I had been there. My

progression was so extensive I qualified for Social Security Disability on

the initial application.

Now at 53, I can walk very short distances with a cane or walker. I can

BARELY manage one step up without a cane and a rail. I can not even walk

into the ditch I dug to pick up trash people throw from cars as they pass.

I use a scooter for shopping and will be going into an electric wheelchair

as soon as I am able to get one. I can not stand even momentarily without

some support. I have difficulty writing and any fine work with my hands is

impossible. Still alone, everything at home falls on me or what I can

afford to hire done. Fatigue is a major problem.

I am not wanting to sound pessimistic. Many with CMT never progress to the

point I have. Some are faster and worse. Many could never do many of the

things I experienced. Every individual with CMT is different. Some never

experience more than minor problems. The ONLY reason I am able to survive

outside an assistive living facility today is that I saw how my mother and

grandmother progressed. I looked ahead at least some, knowing the

potential. I made some preparations. I have good insurance as well as

Medicare. (Since I was 40, I have had four major back surgeries, knee

surgery, surgery for a torn biceps tendon and more medical bills.--in excess

of 200,000 total.)y retirement and insurance have saved me so far.

So to answer your question, YES it is more than wise to look ahead and be

prepared as well as possible. If you never need it you have not wasted the

effort. If you do,, the planning can help prevent financial and emotional

disaster.

It is my sincere hope that you and others will be amongst the ones that

never experience marked progression. As I said, much of my advice is not

limited to those with CMT. EVERY person that lives a " normal " lifespan,

experiences some loss as they age and experience increased medical bills,

frequently combined with a decreased income. It is NOT wise to constantly

look at a dim future, but it is wise to be aware of the potential and

prepare as well as possible.

Good luck.

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

From: Rose

Sent: Sunday, April 29, 2001 11:02 AM

Subject: [] Introduction

Hello everyone,

My name is and I'm 34, live in Northern Colorado, and am

happily engaged to my sweetie Todd, who is not disabled. I have CMT,

although I don't know which type it is. I was diagnosed when I was in

my early teens. I had an ankle fusion (rt ankle) when I was 19 and

could never get off the crutches after that. As of now I use one

crutch, and sometimes a wheelchair (power shopping at the mall, giant

expo halls, etc)

Oddly enough, I make my living 100% as an equine (horse) sculptor,

and my fiance is also involved full time, doing the casting and

shipping of the sculptures. I do have problems with my hands which at

times cause me great concern, but for now I am still able to sculpt

as I always have. I am sure that will change, probably sooner than I

would like (isn't that always the case?)

I enjoy gardening, horseback riding, skiing, and bike riding. The

last two I am able to do with the help of adaptive eqipment. I also

spend

way too much time at the computer :)

We are hoping to be able to buy a few acres next year and have a few

horses. I am wondering if any of you have financial advice for

someone like me, who is getting married and also getting ready to

sell her first house and buy a larger place, with my disability in

mind. I am concerned about not being able to work someday, and having

my medical bills drag us both down. Is this something to really worry

about?

Thanks everyone,

Rose

www.rosehorse.com

@...

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Guest guest

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

From: Rose <rosehorse@...>

< >

Date: Sunday, April 29, 2001 9:57 AM

Subject: [] Introduction

>>>>>>>Hello , welcome to our list. Lots of great informative people on

here, we share information and ideas. You are a very energetic lady! Good for

you! You may never progress beyond the point your at now, we are all so

different. Take it one day at a time, Lamar gave some very good suggestions.

There are some of us on list here that have problems with hands so we can

sympathize with your concerns and hand problems, once again welcome, ~>Becky M.

Hello everyone,

My name is and I'm 34, live in Northern Colorado, and am

happily engaged to my sweetie Todd, who is not disabled. I have CMT,

although I don't know which type it is. I was diagnosed when I was in

my early teens. I had an ankle fusion (rt ankle) when I was 19 and

could never get off the crutches after that. As of now I use one

crutch, and sometimes a wheelchair (power shopping at the mall, giant

expo halls, etc)

Oddly enough, I make my living 100% as an equine (horse) sculptor,

and my fiance is also involved full time, doing the casting and

shipping of the sculptures. I do have problems with my hands which at

times cause me great concern, but for now I am still able to sculpt

as I always have. I am sure that will change, probably sooner than I

would like (isn't that always the case?)

I enjoy gardening, horseback riding, skiing, and bike riding. The

last two I am able to do with the help of adaptive eqipment. I also

spend

way too much time at the computer :)

We are hoping to be able to buy a few acres next year and have a few

horses. I am wondering if any of you have financial advice for

someone like me, who is getting married and also getting ready to

sell her first house and buy a larger place, with my disability in

mind. I am concerned about not being able to work someday, and having

my medical bills drag us both down. Is this something to really worry

about?

Thanks everyone,

Rose

www.rosehorse.com

@...

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Guest guest

In a message dated 4/29/01 5:11:44 PM Eastern Daylight Time, rmax@...

writes:

<< I had an ankle fusion (rt ankle) when I was 19 and

could never get off the crutches after that. >>

Was the problem the ankle, foot, or a multiple of things.

E

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Guest guest

Hello Rose,

Owen here,

A very warm welcome to the group. I'm 58 and just had some hand surgery

( Four weeks ago.) I was a dental technician and most of the work I did

was sculpting of individual teeth i.e.. crowns and bridges. I had

enjoyed the work I had done. I had to retire on disability about 6

years ago. Something that I am still ask my self is; " Should I have

checked with a Hand Specialist earlier? " May they could have prescribed

an alternative treatment to the surgery I had to have now.

Welcome Again!

Happy Trails

Owen

Rose wrote:

> Hello everyone,

>

> My name is and I'm 34, live in Northern Colorado, and am

> happily engaged to my sweetie Todd, who is not disabled. I have CMT,

> although I don't know which type it is. I was diagnosed when I was in

> my early teens. I had an ankle fusion (rt ankle) when I was 19 and

> could never get off the crutches after that. As of now I use one

> crutch, and sometimes a wheelchair (power shopping at the mall, giant

> expo halls, etc)

>

> Oddly enough, I make my living 100% as an equine (horse) sculptor,

> and my fiance is also involved full time, doing the casting and

> shipping of the sculptures. I do have problems with my hands which at

> times cause me great concern, but for now I am still able to sculpt

> as I always have. I am sure that will change, probably sooner than I

> would like (isn't that always the case?)

>

> I enjoy gardening, horseback riding, skiing, and bike riding. The

> last two I am able to do with the help of adaptive eqipment. I also

> spend

> way too much time at the computer :)

>

> We are hoping to be able to buy a few acres next year and have a few

> horses. I am wondering if any of you have financial advice for

> someone like me, who is getting married and also getting ready to

> sell her first house and buy a larger place, with my disability in

> mind. I am concerned about not being able to work someday, and having

> my medical bills drag us both down. Is this something to really worry

> about?

>

>

> Thanks everyone,

>

> Rose

> www.rosehorse.com

> @...

>

>

>

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Guest guest

Welcome ,

It is nice to have you join the group. Hopefully you will find information

to questions you might have; just check the archives section and you can

even read prior postings. With this group....it's informative, helpful and

we always like everyone's input. Feel free to ask questions etc. Again,

welcome!

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

From: Rose <rosehorse@...>

< >

Sent: Sunday, April 29, 2001 10:02 AM

Subject: [] Introduction

> Hello everyone,

>

> My name is and I'm 34, live in Northern Colorado, and am

> happily engaged to my sweetie Todd, who is not disabled. I have CMT,

> although I don't know which type it is. I was diagnosed when I was in

> my early teens. I had an ankle fusion (rt ankle) when I was 19 and

> could never get off the crutches after that. As of now I use one

> crutch, and sometimes a wheelchair (power shopping at the mall, giant

> expo halls, etc)

>

> Oddly enough, I make my living 100% as an equine (horse) sculptor,

> and my fiance is also involved full time, doing the casting and

> shipping of the sculptures. I do have problems with my hands which at

> times cause me great concern, but for now I am still able to sculpt

> as I always have. I am sure that will change, probably sooner than I

> would like (isn't that always the case?)

>

> I enjoy gardening, horseback riding, skiing, and bike riding. The

> last two I am able to do with the help of adaptive eqipment. I also

> spend

> way too much time at the computer :)

>

> We are hoping to be able to buy a few acres next year and have a few

> horses. I am wondering if any of you have financial advice for

> someone like me, who is getting married and also getting ready to

> sell her first house and buy a larger place, with my disability in

> mind. I am concerned about not being able to work someday, and having

> my medical bills drag us both down. Is this something to really worry

> about?

>

>

> Thanks everyone,

>

> Rose

> www.rosehorse.com

> @...

>

>

>

>

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Guest guest

Hi all,

I have been reading posts for quite some time now and find it very

informative and helpful, so I was hoping maybe someone could shed some light

on a problem I have been having.

I am 27 and was diagnosed when I was six. I have had extensive surgery and

spent some time in a chair, although I am mobile now. As of the last 6

months or so, I have been experiencing a problem with my upper thighs. I

find if I have been standing for any length of time, that either one of my

upper thighs goes completely numb and devoid of sensation. A couple of

times, both have gone at once, causing me to collapse. I mentioned this to

my GP, but he had no explanations and I am unable to see my orthopedics man

until next month. I am concerned as I find it is happening with increased

frequency and the periods of numbness are getting longer.

has anyone else experienced anything similar or can offer any ideas?

Much appreciated,

Kathy

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

From: " " <lisarich.com@...>

< >

Sent: Monday, April 30, 2001 11:40 AM

Subject: Re: [] Introduction

> Welcome ,

>

> It is nice to have you join the group. Hopefully you will find

information

> to questions you might have; just check the archives section and you can

> even read prior postings. With this group....it's informative, helpful

and

> we always like everyone's input. Feel free to ask questions etc. Again,

> welcome!

>

>

>

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

> From: Rose <rosehorse@...>

> < >

> Sent: Sunday, April 29, 2001 10:02 AM

> Subject: [] Introduction

>

>

> > Hello everyone,

> >

> > My name is and I'm 34, live in Northern Colorado, and am

> > happily engaged to my sweetie Todd, who is not disabled. I have CMT,

> > although I don't know which type it is. I was diagnosed when I was in

> > my early teens. I had an ankle fusion (rt ankle) when I was 19 and

> > could never get off the crutches after that. As of now I use one

> > crutch, and sometimes a wheelchair (power shopping at the mall, giant

> > expo halls, etc)

> >

> > Oddly enough, I make my living 100% as an equine (horse) sculptor,

> > and my fiance is also involved full time, doing the casting and

> > shipping of the sculptures. I do have problems with my hands which at

> > times cause me great concern, but for now I am still able to sculpt

> > as I always have. I am sure that will change, probably sooner than I

> > would like (isn't that always the case?)

> >

> > I enjoy gardening, horseback riding, skiing, and bike riding. The

> > last two I am able to do with the help of adaptive eqipment. I also

> > spend

> > way too much time at the computer :)

> >

> > We are hoping to be able to buy a few acres next year and have a few

> > horses. I am wondering if any of you have financial advice for

> > someone like me, who is getting married and also getting ready to

> > sell her first house and buy a larger place, with my disability in

> > mind. I am concerned about not being able to work someday, and having

> > my medical bills drag us both down. Is this something to really worry

> > about?

> >

> >

> > Thanks everyone,

> >

> > Rose

> > www.rosehorse.com

> > @...

> >

> >

> >

> >

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Guest guest

Hi kathy,

I had this problem two or three times in the last few years. In my case, a

whole half of my body was going numb, I couldn't even raise my arm above my

shoulder. It scared the **** out of me. :) It lasted for a few hours.

The cause was simple: I pushed myself too hard the days before, very long

walks, not enough sleep, etc...

Try to find if you have been to active the days before, when it happens.

Maxime

>From: " Kathy Nolan " <q9721111@...>

>Reply-

>< >

>Subject: Re: [] Introduction

>Date: Mon, 30 Apr 2001 12:51:59 +1000

>

>Hi all,

>I have been reading posts for quite some time now and find it very

>informative and helpful, so I was hoping maybe someone could shed some

>light

>on a problem I have been having.

>I am 27 and was diagnosed when I was six. I have had extensive surgery and

>spent some time in a chair, although I am mobile now. As of the last 6

>months or so, I have been experiencing a problem with my upper thighs. I

>find if I have been standing for any length of time, that either one of my

>upper thighs goes completely numb and devoid of sensation. A couple of

>times, both have gone at once, causing me to collapse. I mentioned this to

>my GP, but he had no explanations and I am unable to see my orthopedics man

>until next month. I am concerned as I find it is happening with increased

>frequency and the periods of numbness are getting longer.

>has anyone else experienced anything similar or can offer any ideas?

>Much appreciated,

>Kathy

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

>From: " " <lisarich.com@...>

>< >

>Sent: Monday, April 30, 2001 11:40 AM

>Subject: Re: [] Introduction

>

>

> > Welcome ,

> >

> > It is nice to have you join the group. Hopefully you will find

>information

> > to questions you might have; just check the archives section and you can

> > even read prior postings. With this group....it's informative, helpful

>and

> > we always like everyone's input. Feel free to ask questions etc.

>Again,

> > welcome!

> >

> >

> >

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

> > From: Rose <rosehorse@...>

> > < >

> > Sent: Sunday, April 29, 2001 10:02 AM

> > Subject: [] Introduction

> >

> >

> > > Hello everyone,

> > >

> > > My name is and I'm 34, live in Northern Colorado, and am

> > > happily engaged to my sweetie Todd, who is not disabled. I have CMT,

> > > although I don't know which type it is. I was diagnosed when I was in

> > > my early teens. I had an ankle fusion (rt ankle) when I was 19 and

> > > could never get off the crutches after that. As of now I use one

> > > crutch, and sometimes a wheelchair (power shopping at the mall, giant

> > > expo halls, etc)

> > >

> > > Oddly enough, I make my living 100% as an equine (horse) sculptor,

> > > and my fiance is also involved full time, doing the casting and

> > > shipping of the sculptures. I do have problems with my hands which at

> > > times cause me great concern, but for now I am still able to sculpt

> > > as I always have. I am sure that will change, probably sooner than I

> > > would like (isn't that always the case?)

> > >

> > > I enjoy gardening, horseback riding, skiing, and bike riding. The

> > > last two I am able to do with the help of adaptive eqipment. I also

> > > spend

> > > way too much time at the computer :)

> > >

> > > We are hoping to be able to buy a few acres next year and have a few

> > > horses. I am wondering if any of you have financial advice for

> > > someone like me, who is getting married and also getting ready to

> > > sell her first house and buy a larger place, with my disability in

> > > mind. I am concerned about not being able to work someday, and having

> > > my medical bills drag us both down. Is this something to really worry

> > > about?

> > >

> > >

> > > Thanks everyone,

> > >

> > > Rose

> > > www.rosehorse.com

> > > @...

> > >

> > >

> > >

> > >

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Hi Kathy,

Owen here,

Occasionally I have the same problem with my legs / thighs. I think

that in my case I have determined it happens when I have been sitting

with my legs dangling off of where ever I happen to be sitting.

Sometimes I forget to adjust a desk chair that is to high and it presses

on the back of my thighs causing numbness. There are times when I get up

from our sofa after sitting there too long ( to long for me is one

hour.) then my legs even my but gets numb. I my opinion in my case I

think it maybe because of the loss of muscle mass which protects the

nerves from being compressed and causing numbness. My solution has been

to not sit in one place to long and to make sure the chair is the right

height.

I hope my experiences have been of some help.

Happy Trails

Owen

Kathy Nolan wrote:

> Hi all,

> I have been reading posts for quite some time now and find it very

> informative and helpful, so I was hoping maybe someone could shed some

> light

> on a problem I have been having.

> I am 27 and was diagnosed when I was six. I have had extensive

> surgery and

> spent some time in a chair, although I am mobile now. As of the last 6

>

> months or so, I have been experiencing a problem with my upper thighs.

> I

> find if I have been standing for any length of time, that either one

> of my

> upper thighs goes completely numb and devoid of sensation. A couple of

>

> times, both have gone at once, causing me to collapse. I mentioned

> this to

> my GP, but he had no explanations and I am unable to see my

> orthopedics man

> until next month. I am concerned as I find it is happening with

> increased

> frequency and the periods of numbness are getting longer.

> has anyone else experienced anything similar or can offer any ideas?

> Much appreciated,

> Kathy

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

> From: " " <lisarich.com@...>

> < >

> Sent: Monday, April 30, 2001 11:40 AM

> Subject: Re: [] Introduction

>

>

> > Welcome ,

> >

> > It is nice to have you join the group. Hopefully you will find

> information

> > to questions you might have; just check the archives section and you

> can

> > even read prior postings. With this group....it's informative,

> helpful

> and

> > we always like everyone's input. Feel free to ask questions etc.

> Again,

> > welcome!

> >

> >

> >

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

> > From: Rose <rosehorse@...>

> > < >

> > Sent: Sunday, April 29, 2001 10:02 AM

> > Subject: [] Introduction

> >

> >

> > > Hello everyone,

> > >

> > > My name is and I'm 34, live in Northern Colorado, and am

> > > happily engaged to my sweetie Todd, who is not disabled. I have

> CMT,

> > > although I don't know which type it is. I was diagnosed when I was

> in

> > > my early teens. I had an ankle fusion (rt ankle) when I was 19 and

>

> > > could never get off the crutches after that. As of now I use one

> > > crutch, and sometimes a wheelchair (power shopping at the mall,

> giant

> > > expo halls, etc)

> > >

> > > Oddly enough, I make my living 100% as an equine (horse) sculptor,

>

> > > and my fiance is also involved full time, doing the casting and

> > > shipping of the sculptures. I do have problems with my hands which

> at

> > > times cause me great concern, but for now I am still able to

> sculpt

> > > as I always have. I am sure that will change, probably sooner than

> I

> > > would like (isn't that always the case?)

> > >

> > > I enjoy gardening, horseback riding, skiing, and bike riding. The

> > > last two I am able to do with the help of adaptive eqipment. I

> also

> > > spend

> > > way too much time at the computer :)

> > >

> > > We are hoping to be able to buy a few acres next year and have a

> few

> > > horses. I am wondering if any of you have financial advice for

> > > someone like me, who is getting married and also getting ready to

> > > sell her first house and buy a larger place, with my disability in

>

> > > mind. I am concerned about not being able to work someday, and

> having

> > > my medical bills drag us both down. Is this something to really

> worry

> > > about?

> > >

> > >

> > > Thanks everyone,

> > >

> > > Rose

> > > www.rosehorse.com

> > > @...

> > >

> > >

> > >

> > >

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  • 5 months later...

Welcome Jolene,

Hi, I am and I am happy to see that you have learned from the group. It

is the best thing I have found so far. The doctors cannot touch enough of us

to gather the data needed. Maybe they should join our site and learn as we do.

Maybe I will see about saving all the intros, without address, of course and

give them to the chicken doctors here on the shore.

God Bless You and again welcome,

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  • 2 months later...

Hello blackiebowman

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

From: blackiebowman@...

Sent: Wednesday, January 09, 2002 8:13 PM

Subject: [] Introduction

Hi everyone! I am a female who was born with CMT 59 years ago. Little was

known then about CMT. In fact, every doctor I was seen by told my parents

that I was just clumbsy trying to walk at age 8 months. This diagnosis

continued for thirteen years. Then, a doctor visiting from England saw me and

knew right away what was wrong. I have been fortunate since being operated on

in that my type 1 hasn't progressed at a rapid speed. I have three healthy

grown children and two healthy granddaughters. Reading all the e-mails about

pain I am grateful to say that I don't experience this .

for CMT AWARENESS; Wear Your Violet Ribbons,

more awareness of CMT equals more research funds and

more knowlege of Charcot Marie Tooth Disease!

is the SOLE authentic ribbon distributor! Get

your's today! Email the moderator with your request!

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Hi All! Yes, it sure is great to find others who have the same condition (if

that's the right word) to talk with. I'm new to talking on the internet so I

hope you will bear with me and I look forward to receiving e-mail. Hope all

have a great day. I'm going to try to go out to the mall today providing I

can get me and my scooter off the curb. For some reason the transportation

department finds that curb cuts were designed for holding mounds of snow that

the plows push off the road. Well, hope I haven't bored anyone. Looking

forward to talking with everyone later. Blackiebowman

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Welcome to both Rocky and Blackiebowman

I am fairly new to the group also and have found

warmth, compassion, understanding, information and

believe it or not people who are just like me.

I was once told that I was like a pet Coon, what I

didn't trip over, tear up, or break, I pooped on (LOL,

that was a joke ma'm just a joke.) So it looks like

there are a lot of us cute little rascals in this

group and everyone of them are dear to me.

Susie

__________________________________________________

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Hello Susie

Thanks for the welcome!

Rocky

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

From: Susie Lemin

Sent: Thursday, January 10, 2002 7:28 AM

Subject: Re: [] Introduction

Welcome to both Rocky and Blackiebowman

I am fairly new to the group also and have found

warmth, compassion, understanding, information and

believe it or not people who are just like me.

I was once told that I was like a pet Coon, what I

didn't trip over, tear up, or break, I pooped on (LOL,

that was a joke ma'm just a joke.) So it looks like

there are a lot of us cute little rascals in this

group and everyone of them are dear to me.

Susie

__________________________________________________

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Have a great time at mall!

Rocky

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

From: blackiebowman@...

Sent: Thursday, January 10, 2002 9:17 AM

Subject: Re: [] Introduction

Hi All! Yes, it sure is great to find others who have the same condition (if

that's the right word) to talk with. I'm new to talking on the internet so I

hope you will bear with me and I look forward to receiving e-mail. Hope all

have a great day. I'm going to try to go out to the mall today providing I

can get me and my scooter off the curb. For some reason the transportation

department finds that curb cuts were designed for holding mounds of snow that

the plows push off the road. Well, hope I haven't bored anyone. Looking

forward to talking with everyone later. Blackiebowman

for CMT AWARENESS; Wear Your Violet Ribbons,

more awareness of CMT equals more research funds and

more knowlege of Charcot Marie Tooth Disease!

is the SOLE authentic ribbon distributor! Get

your's today! Email the moderator with your request!

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Share on other sites

might as well of sent this one by US mail!!!

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

From: Rocky

Sent: Friday, January 11, 2002 1:26 PM

Subject: Re: [] Introduction

Have a great time at mall!

Rocky

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

From: blackiebowman@...

Sent: Thursday, January 10, 2002 9:17 AM

Subject: Re: [] Introduction

Hi All! Yes, it sure is great to find others who have the same condition (if

that's the right word) to talk with. I'm new to talking on the internet so I

hope you will bear with me and I look forward to receiving e-mail. Hope all

have a great day. I'm going to try to go out to the mall today providing I

can get me and my scooter off the curb. For some reason the transportation

department finds that curb cuts were designed for holding mounds of snow that

the plows push off the road. Well, hope I haven't bored anyone. Looking

forward to talking with everyone later. Blackiebowman

for CMT AWARENESS; Wear Your Violet Ribbons,

more awareness of CMT equals more research funds and

more knowlege of Charcot Marie Tooth Disease!

is the SOLE authentic ribbon distributor! Get

your's today! Email the moderator with your request!

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Share on other sites

  • 3 months later...
Guest guest

Hello Stoners,

I have been reading this list with interest for some months now. Because of time

restraints, I have not introduced myself nor have I written my point by point

experiences with the flushes that I have been doing since early January, but I

can say that every single flush I have done so far has been a completely

different experience. I am open to anyone who may wish to respond to this

lengthy introduction.

A synopsis of my experiences...

Me: vegetarian, good diet, active (in my profession and I even did a marathon

when I was going through some of the worst of the pain episodes :~) ), mid 30's,

female, no children, no family with similar symptoms...only thing I can think of

that my lead to this tendency is that I was born " jaundiced. "

Symptoms Prior to Flushes: (Please note some of these symptoms came on gradually

over years and others were induced by what my doctor had prescribed to " help " me

- I was the pain and the NON help of my doctors sent me in search of finding

alternative routes to stop the pain - only to find out the flushing is also

clearing up, or at least greatly reducing, ALL of these other symptoms)....

chronic colic like pain originating in the GB area and radiating around the

liver area - both anteriorly, laterally and posteriorly - which lasted for over

a year and gradually kept getting worse (did not have any pattern to it -

sometimes it was constant - sometimes it would subside - it did not seem to

" flare up " or calm down by anything I ate, did, how I slept, or what I did to

try and relieve the pain), difficulty taking in deep breaths, difficultly

bending over at waist, difficulty palpating under the ribs when trying to sooth

the pain, chronic hiccups, skin inflammation and breakouts, very evident signs

of accelerated skin aging last year before the flush, daily hot flashes/heat

intolerant (love a good steam though), low body temperature, low blood pressure,

fast resting heart rate - easy to get going too fast when exercising, borderline

low iron levels, dry flaky skin on feet, face, and scalp (scalp was a recent

development), psoriasis patch on the back of the neck and scalp about the size

of my fist, significant increase of " gray " hair (I have always had a few " gray "

hairs - even as a child), fatigue, swelling in joints, swelling in legs, pain

and discoloration in ankles and feet (mottled red, yellow, white, blue, and

purple colors - yes, I know, sounds pretty ugly...and it was!), bloating and gas

in the abdomen, occasionally bowel disturbances but not that noticeable...at the

time- that is - now I know better - I was having more problems with that than

I’d wanted to admit ;~), insomnia, restless and light sleeper, weight gain (even

though I was training for a marathon and watching my diet closely! Yeah, my

trainers were baffled by it too.), significant swelling in some of the glands of

my neck, increased sinus problems that are not related to my displaced septum,

chronic upper back and neck stiffness and pain - mostly right side.

Attempts with " healing " using " modern medicine " : Went to the doctor specifically

to consult for pain in my side and the swollen gland in my neck. The1st visit

with doctor resulted in doing a blood test. Prescribed iron for " borderline "

iron levels. I refused to take the ferrous sulfate. Tried a more natural source

for iron in same dosages that were prescribed. BIG MISTAKE! A number of the

symptoms that are mentioned above resulted from this experience, or were GREATLY

exacerbated...including the pain in my side, some of the resulting symptoms

(hair falling out, reddish stretch marks suddenly appearing on lower abdomen,

muscle cramps, skin turning " copper " colored, depression and significant mood

changes)...did subside within a few months after stopping the iron. I stopped

the prescription 3/4 of the way through what the doctor had prescribed. Tested

again for Iron. Normal (HA!...if you call being near death’s door being

normal...I had all the symptoms of significant iron poisoning). Started

cleansing at the point which lasted for several months - first a bowel cleanse,

then the parasite cleanse, and then the kidney cleanse. None of these really

made much difference for me. Since my blood test had showed normal lipid and

cholesterol levels, doctor began to think it may be a UT infection. The doctor

then ordered a UA. Test came back with borderline elevated leukocytes. Tested

again - clear. Tested again - borderline. Doctor prescribed Cipro - " just to be

sure. " Tried alternative method of manose first. Test then came back normal.

Pain in GB area still there though. Over a 8 month period tested nearly monthly,

with random results on UA, sometime borderline, most of the time clear. Finally,

in frustration I gave into taking the Cipro. Inflamation response did go down,

along with some...but not all...of the pain. Next UA was clear. ...but the pain

was still there. Saw a different doctor, who puzzled as to why I had had so many

UA’s, and been prescribed Cipro, for having such a low number of elevated

leukocytes from the tests...decided it might be the gallbladder after all and

ordered an ultrasound. Test showed clear on all organs that were checked

(spleen, liver, gallbladder, pancreas, and kidneys), lipid and cholesterol

levels normal. At this point I found Dr. Chang’s site and gave up on the my

doctor’s. Haven’t been back since.

Started Dr Chang’s regimen. The Chinese Bitters gave me a great deal of

discomfort, even in lower dosages. Switched to CGG, Coptis, & Curcuma, did 4

weeks and then began my flushes. Added the bitters back in after the 2nd flush

with no more problems. Every flush has had different results without much change

in the way I have done them. The only difference is that I added the Epsom salts

to the 3rd flush and kept with that from that point on). I have only had the

waxy and soft " cholesterol " stones pass with the 6 flushes I have done so far

(with a couple of them being nearly 2 inches long and 3/4 inches in diameter).

Of all the 6 flushes - for 4 of them, in order to even get any results, I had to

flush two nights in row ( more accurately on the 2nd flush, I started getting

results when I was on my 3rd glass of the " mixture " on the second night...I

passed the most " stones " along other stuff with that flush. The 3rd time I got

result the first try. The last flush, I got results the first time but it was as

I downing the first glass of the seconds night’s oil, so I went ahead and did

the second night anyway... which did not produce anything but obvious olive oil

and grapefruit juice). Other then the 3rd flush, the " stones " have all been

varying shades of green. The first 2 flushes produced the dark emerald green

ones. The later flushes produced the lighter green and sometimes pure white

ones. The white ones are the softest and most crumbly of them all. The 3rd

flush, produced mostly tan, orangish, waxy and more rubbery " stones " (this is

the one that I did only one night of the " mixture. " ) I have also noticed with

the last 2 flushes that after I pass the stones, a little later I will pass what

looks like a glob of pure cholesterol. It is white in color, is not in the shape

of a stone and would amount to about 2 to 3 tablespoons full (the texture is the

same as the whit looking stones...it just doesn’t have any real shape to it.. I

am wondering if this is some of the ‘fat " I having been losing with my weight

loss. I have lost about 15 to 20 pounds and a lot of inches (not to mention all

the other health improvements that keep on coming)...the last 3 flushes only

produced around 100 to 150 " stones " combined. The largest " stones " that I have

passed since I started were passed were during the 4th, 3rd, and 5th flush

(descending order of size). Overall, I would say I had passed only about 700 to

800 " stones " altogether - which is nothing like the numbers I have been hearing

from others. The biggest joy to me is I now have only a very specifically

located occasional " twinge " of pain (toward the lateral side of my ribs around

the liver area) which leads me to believe there is still a larger " stone " lodged

there that is trying to move its way down to the gall bladder...but hasn’t yet.

(BTW, I did feel the largest stones move laterally to my gallbladder before they

flushed out...and they were in some the areas that used to be part of my chronic

pain).

Well, I think I have written enough about my flushes for now.

Now to....

......Gallstones that cause colic pain and that have hardened within the

gallbladder is in my opinion the only form of bile that should be termed as

'gallstones'. The soft balls of whatever bile content, cholesterol, or even oil

for that matter, does not usually require an accelerated means of exiting as

with the process of a flush. It will not usually cause a problem and will

generally exit within the normal function of digestive action........

My questions now are....

Given my experience ...if what I have passed is not " gallstones " what should

they be called? I have heard the term " liver stones " used on occasion. Is that a

more accurate term to use? Maybe " bile " stone? I am just trying to figure out

what to call these things. If not " stones " ...then what?

For so few stones to have passed in these flushes, and all of them being the

‘soft’ kind, why was I experiencing such significant chronic pain which started

around my GB?...and if these " stones " match the description of what Barry says

should pass and dissolve normally, then what would cause the breakdown of this

natural process in someone who eats VERY little cholesterol in the first place?

(I have been a vegetarian all my life and have consumed very little dairy and

eggs over the years. Since I started this flushing, I have been switching to a

nearly vegan 70% to 80% raw diet and been reducing my omega 6 and increasing my

omega 3 intake)

Has anyone else had to flush for 2 nights in order to get results? Does anyone

have an idea as to why I needed to do this " extra purge " to get the stones to

pass?

Has anyone literally felt the " stones " moved transversely across the liver to

the gallbladder like I have?

I have been learning a lot from this list and look forward to further discussion

and stories.

Christa

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

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In a message dated 4/28/02 10:04:13 AM Eastern Daylight Time,

suzanne_on_ca@... writes:

> . I am not sure of an answer,

> but my theory is that a weakened liver can create havoc with the

> gallbladder. (Check out Dr Cabot's site for a bit of a liver guide.)

>

From what I've read, a weakened liver can create havoc for just about any

part of the body, so it does seem likely that there would be a connection

with the gallbladder as well.

rachel~

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