Hello All

[Guest guest]

Hi ,

I am so happy for you!!! <Big hug> Antibiotics are truely amazing. I

have been on the program for about 16 mos. and I can't say I'm cured but

really have improved since last year this time. How did you come up with

the right antibiotics? Where are you from? Did you go to a

rheumatologist or a GP? I can't wait for your story!!! I hope you have

continued good luck.

Cooky

> paul wrote:

>

> my name is paul troy and some of you may remember me when this mailing

> list first started by last year, anyway i have AS with Crohn's and i

> have been doing great . I now take mycobutin and clairthromycin for

> the crohn's three days a week and the amazing levaquin for the AS, I

> have almost acheived 100 % remission like Kinghorn and many others.

> I've gone from sitting in a bed in pain to almost playing

> sports regularily again, a few rheumy's are real angry cuz i have

> nearly healed myself and in 2-3 years they are going to have to go

> back to school or lose their

> jobs ...lol

>

> Anyway anyone with AS email me if you want to find out about the

> healing process or some other contacts, no time to waste, nice talking

> to you all again and when i acheive full remission i will definately

> tell the tale and start up my own AS group.

> antibiotics and supplements heal AS you just have to make sure it's

> the right ones

> and in the right doses and lengths of time, i may start lifting

> weights again i can't wait see ya all!!

[Guest guest]

Congratulations . I am so glad to hear of your progress. Good for you

for doing the AP and showing narrow minded RD's they need to be re-educated.

There are other, less threatening ways to treat their patients instead of the

stuff they were giving us. Please keep us informed on your progress. Happy

weight lifting.

Love

Bev

rheumatic hello all

my name is paul troy and some of you may remember me when this mailing list

first started by last year, anyway i have AS with Crohn's and i have been doing

great . I now take mycobutin and clairthromycin for the crohn's three days a

week and the amazing levaquin for the AS, I have almost acheived 100 % remission

like Kinghorn and many others. I've gone from sitting in a bed in pain to almost

playing

sports regularily again, a few rheumy's are real angry cuz i have nearly

healed myself and in 2-3 years they are going to have to go back to school or

lose their

jobs ...lol

Anyway anyone with AS email me if you want to find out about the healing

process or some other contacts, no time to waste, nice talking to you all again

and when i acheive full remission i will definately tell the tale and start up

my own AS group.

antibiotics and supplements heal AS you just have to make sure it's the

right ones

and in the right doses and lengths of time, i may start lifting weights

again i can't wait see ya all!!

[Guest guest]

Cooky that is a good question to ask. What dose of these antibiotics does

he take and what supplements. I can't wait to find out too.

Bev

rheumatic Re: hello all

>From: stonk1 <stonk1@...>

>

>Hi ,

>I am so happy for you!!! <Big hug> Antibiotics are truely amazing. I

>have been on the program for about 16 mos. and I can't say I'm cured but

>really have improved since last year this time. How did you come up with

>the right antibiotics? Where are you from? Did you go to a

>rheumatologist or a GP? I can't wait for your story!!! I hope you have

>continued good luck.

>

>Cooky

>

>> paul wrote:

>>

>> my name is paul troy and some of you may remember me when this mailing

>> list first started by last year, anyway i have AS with Crohn's and i

>> have been doing great . I now take mycobutin and clairthromycin for

>> the crohn's three days a week and the amazing levaquin for the AS, I

>> have almost acheived 100 % remission like Kinghorn and many others.

>> I've gone from sitting in a bed in pain to almost playing

>> sports regularily again, a few rheumy's are real angry cuz i have

>> nearly healed myself and in 2-3 years they are going to have to go

>> back to school or lose their

>> jobs ...lol

>>

>> Anyway anyone with AS email me if you want to find out about the

>> healing process or some other contacts, no time to waste, nice talking

>> to you all again and when i acheive full remission i will definately

>> tell the tale and start up my own AS group.

>> antibiotics and supplements heal AS you just have to make sure it's

>> the right ones

>> and in the right doses and lengths of time, i may start lifting

>> weights again i can't wait see ya all!!

>

>------------------------------------------------------------------------

>Start a new hobby. Meet a new friend.

>

>Onelist: The leading provider of free email list services

>

[Guest guest]

In a message dated 8/19/2001 1:38:38 PM Pacific Daylight Time,

lenka@... writes:

<< I'm teaching 2nd grade full time but it's a challenge to take care of

myself and my job at the same time. >>

I wish you were at my childrens school!

jenny

[Guest guest]

Hi Lenka!

You and my brother Brad (who would prefer we call him Brady) sound almost

identical in symptoms. he has finally joined the group after being diagnosed

with cmt a short while ago. His symptoms are mild just like yours. In fact he

never knew he had it until he started having some numbness in his hand (too

much weight lifting) and went to the doctor who thought he had carpal

tunnels. A trip to the neurologist said he had cmt. I am so glad you have

written. My brother also didn't walk until he was 2 years old. And his

problems are centered on balance and coordination.He has high arches also.

This will really help my brother.And I know it will you also. You will not

only find valuable info here, you will find a group of over 500 people that

will embrace you with open arms., and become your friends. I am new to this

sight also, as my brother was just diagnosed with cmt. So far, no one else in

my family has this. I am so thankful I found this wonderful group of

friends.They have been a blessing to my entire family. Take care and write

often!

Hugs From West Virginia!

[Guest guest]

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

From: lenka@... <lenka@...>

< >

Date: Sunday, August 19, 2001 3:30 PM

Subject: [] Hello all

..

.

>>>>Welcome Lenka! Have you printed out CMT information for the school? If

they read and learn about it, they may understand better, ~>Becky M.

Hello! I'm new to this group and appreciate reading about all of

your insights and experiences. I'm 29 with mild CMT.

[Guest guest]

PLEASE PLEASE PLEASE. Remove Me from this group. I no longer care to receive

messages, Thank you.

Ray

[Guest guest]

Heidi

Hi,my name is I was just diagnosed with CMT 1A.I am a hairdresser

looking for a new career.By the way the other CMT ers getting a career list

are giving me some good ideas as well as hope.Thank you!

Anyway all of this that im feeling is so new and over whelming.I have an OT

appoinment and Podiatry appointment at the end of the month.I cannot wait til

these appointments so I know what I can do as far as saving my energy.

Well I hope you read this and write back.

[Guest guest]

Hello ,

I started out this past December working as a preschool teacher. Before I

started

the job I told my boss and gave her information on CMT and said I do have

physical challenges. However, they tended not to pay attention to the

information

and that I even had CMT. As a result I ended up with a knee injury. I have been

getting workmen's comp and they tried to make me go back to the job, yet I told

them that my work had not accomodated me before so what makes them think they

will accomodate me. I also stated that ultimately it is my life and my choice

whether to go back to the job the more I thought about it and talked with my

husband about the more depressed and upset I became. I have chosen not to go

back

to that job. I feel much happier with that decision. I have applied for a

substitute job at a few different schools, I hope this works out since if I am

not feeling well or having a CMT day then I can have the choice not to go in. I

am crossing my fingers to get the substitute job. I also applied for a job at

Wal-Mart as people greeting, Wal-Mart as far as I know is very accomodating to

people with physical challenges. I know one man who has worked at Wal-Mart for a

year in electronics and is in a wheelchair.

The most important thing to remember is to do what makes you happy and what

you physically can do. Don't do what I did and push yourself so hard that you

end

up injuried. I was not thinking of myself, I was thinking of everyone else but

myself. I was trying to pretend I was " normal " HA surprise, surprise, I am an

individual with special needs and need to be treated as a human being as well as

having accomodations made for myself. This has been very difficult and quite the

learning process for me, yet I now have learned that I have limitations and must

save the energy for myself, and my family and to be able to enjoy life's

treasures they are all around us, the trees, waterfall, mountains, animals, etc.

Thank You,

Heidi

Weenerwil@... wrote:

> Heidi

> Hi,my name is I was just diagnosed with CMT 1A.I am a hairdresser

> looking for a new career.By the way the other CMT ers getting a career list

> are giving me some good ideas as well as hope.Thank you!

> Anyway all of this that im feeling is so new and over whelming.I have an OT

> appoinment and Podiatry appointment at the end of the month.I cannot wait til

> these appointments so I know what I can do as far as saving my energy.

> Well I hope you read this and write back.

>

>

>

[Guest guest]

Heidi

Thanks for writting back.Good luck with the " sub " job.

You know I can relate to you about thinking of others and doing things like

there is nothing wrong.I was having a hard time letting go of my clients

and facing the fact of being a hairdresser is causing more harm than good.I

am now teaching at the beauty college but im on my feet for 5 hours a

night.by the time I get home am so tired and I dont want to walk.Thank

goodness my son is in bed a sleep.Well I am going to save my energy for what

is important to me.One thing that is helping is that I wrote down a list of

everything I wanted to do and a list of who I think I am.This has helped put

some direction in my life.

Thank you again for writing back

and I hope to hear from you again.

[Guest guest]

Hello Will,

Sorry took me so long to get back to you, server was down. Yes that is very

good advice Will to write down a list with everything you want to do and who one

thinks they are. Also I wanted to tell you I am a published poet and looking

into freelance writing , yet I do not know much about the publishing industry

yet. If anyone does this would be of great help! Hey yeah never know if I get

some of my work published I could write about CMT??? What do you think???? I was

even thinking about writing an article about CMT in the local newspaper. I live

in a very small town and I think I am the only one who has it around here,

besides my children of course.

Yes CMT people always must remember to conserve energy as we tire so easily.

I have to becareful myself not to stand too long or else I am in excruciating

pain. Well I must go eat lunch and I am glad to be back online. Like having

communication with other CMT people.

Take care,

Heidi

Weenerwil@... wrote:

> Heidi

> Thanks for writting back.Good luck with the " sub " job.

> You know I can relate to you about thinking of others and doing things like

> there is nothing wrong.I was having a hard time letting go of my clients

> and facing the fact of being a hairdresser is causing more harm than good.I

> am now teaching at the beauty college but im on my feet for 5 hours a

> night.by the time I get home am so tired and I dont want to walk.Thank

> goodness my son is in bed a sleep.Well I am going to save my energy for what

> is important to me.One thing that is helping is that I wrote down a list of

> everything I wanted to do and a list of who I think I am.This has helped put

> some direction in my life.

> Thank you again for writing back

> and I hope to hear from you again.

>

>

>

[Guest guest]

Heidi,

I have been teaching school for the past seven years. I am sure that there

are many great teachers who have physical disabilities, but I wish someone had

told me years ago that teaching is a physically stressing job. I think people

forget that an important part of teaching is interacting with students. This is

tough to do when you can't easily walk to them. (many classrooms don't have room

to manuveur a wheelchair). Being on my feet, handing out books and papers with

hands that don't work, writing, etc. It all became too difficult. I am also

thinking of subbing eventually, but for now I am trying to slow down.

Hello ,

I started out this past December working as a preschool teacher. Before I

started

the job I told my boss and gave her information on CMT and said I do have

physical challenges. However, they tended not to pay attention to the

information

and that I even had CMT. As a result I ended up with a knee injury. I have

been

getting workmen's comp and they tried to make me go back to the job, yet I

told

them that my work had not accomodated me before so what makes them think they

will accomodate me. I also stated that ultimately it is my life and my choice

whether to go back to the job the more I thought about it and talked with my

husband about the more depressed and upset I became. I have chosen not to go

back

to that job. I feel much happier with that decision. I have applied for a

substitute job at a few different schools, I hope this works out since if I am

not feeling well or having a CMT day then I can have the choice not to go in.

I

am crossing my fingers to get the substitute job. I also applied for a job at

Wal-Mart as people greeting, Wal-Mart as far as I know is very accomodating to

people with physical challenges. I know one man who has worked at Wal-Mart for

a

year in electronics and is in a wheelchair.

The most important thing to remember is to do what makes you happy and

what

you physically can do. Don't do what I did and push yourself so hard that you

end

up injuried. I was not thinking of myself, I was thinking of everyone else but

myself. I was trying to pretend I was " normal " HA surprise, surprise, I am an

individual with special needs and need to be treated as a human being as well

as

having accomodations made for myself. This has been very difficult and quite

the

learning process for me, yet I now have learned that I have limitations and

must

save the energy for myself, and my family and to be able to enjoy life's

treasures they are all around us, the trees, waterfall, mountains, animals,

etc.

Thank You,

Heidi

Weenerwil@... wrote:

> Heidi

> Hi,my name is I was just diagnosed with CMT 1A.I am a hairdresser

> looking for a new career.By the way the other CMT ers getting a career list

> are giving me some good ideas as well as hope.Thank you!

> Anyway all of this that im feeling is so new and over whelming.I have an OT

> appoinment and Podiatry appointment at the end of the month.I cannot wait

til

> these appointments so I know what I can do as far as saving my energy.

> Well I hope you read this and write back.

>

>

>

[Guest guest]

Hello ,

If I had the choice I would slow down. As it stands right now financially I can

not afford to stay at home. As I don't have any medical insurance and any other

income coming in besides my husbands and that isn't a whole lot to pay off those

bills. So I am going to try it. In the meantime if I could land a job as a

freelance writer and do this for a living this would make me happy for sure. Yet

this takes time, so I have to be something else in the meantime.

Take care,

Heidi

and Daryl Leach wrote:

> Heidi,

> I have been teaching school for the past seven years. I am sure that there

are many great teachers who have physical disabilities, but I wish someone had

told me years ago that teaching is a physically stressing job. I think people

forget that an important part of teaching is interacting with students. This is

tough to do when you can't easily walk to them. (many classrooms don't have room

to manuveur a wheelchair). Being on my feet, handing out books and papers with

hands that don't work, writing, etc. It all became too difficult. I am also

thinking of subbing eventually, but for now I am trying to slow down.

>

>

> Hello ,

> I started out this past December working as a preschool teacher. Before I

started

> the job I told my boss and gave her information on CMT and said I do have

> physical challenges. However, they tended not to pay attention to the

information

> and that I even had CMT. As a result I ended up with a knee injury. I have

been

> getting workmen's comp and they tried to make me go back to the job, yet I

told

> them that my work had not accomodated me before so what makes them think

they

> will accomodate me. I also stated that ultimately it is my life and my

choice

> whether to go back to the job the more I thought about it and talked with my

> husband about the more depressed and upset I became. I have chosen not to go

back

> to that job. I feel much happier with that decision. I have applied for a

> substitute job at a few different schools, I hope this works out since if I

am

> not feeling well or having a CMT day then I can have the choice not to go

in. I

> am crossing my fingers to get the substitute job. I also applied for a job

at

> Wal-Mart as people greeting, Wal-Mart as far as I know is very accomodating

to

> people with physical challenges. I know one man who has worked at Wal-Mart

for a

> year in electronics and is in a wheelchair.

> The most important thing to remember is to do what makes you happy and

what

> you physically can do. Don't do what I did and push yourself so hard that

you end

> up injuried. I was not thinking of myself, I was thinking of everyone else

but

> myself. I was trying to pretend I was " normal " HA surprise, surprise, I am

an

> individual with special needs and need to be treated as a human being as

well as

> having accomodations made for myself. This has been very difficult and quite

the

> learning process for me, yet I now have learned that I have limitations and

must

> save the energy for myself, and my family and to be able to enjoy life's

> treasures they are all around us, the trees, waterfall, mountains, animals,

etc.

> Thank You,

> Heidi

>

> Weenerwil@... wrote:

>

> > Heidi

> > Hi,my name is I was just diagnosed with CMT 1A.I am a hairdresser

> > looking for a new career.By the way the other CMT ers getting a career

list

> > are giving me some good ideas as well as hope.Thank you!

> > Anyway all of this that im feeling is so new and over whelming.I have an

OT

> > appoinment and Podiatry appointment at the end of the month.I cannot wait

til

> > these appointments so I know what I can do as far as saving my energy.

> > Well I hope you read this and write back.

> >

> >

> >

[Guest guest]

I teach as well, second grade. This is my fifth year teaching young

kids and it's getting more and more challenging. My work tries to

accomodate but it's so difficult not to be on my feet most of the

day. Teaching is a good job in that I can define the pacing to some

extent throught the day. I do a lot of small groups where I sit with

5-8 kids. It is physically demanding, though, no way around it. I'm

trying to work on more tricks to simplify. But isn't that a common

story for all teachers ?

I'm trying to break into a writing career since my hands are great

and I can type no problem. That would help fatigue and standing too

long immensely. Not so easy to do, though.

[Guest guest]

My sister has one of those desk chairs on wheels (just

the normal type) and says she often rolls from desk to

desk (the children's desks) as she's helping various

students and looking at their work.

Laurie E

--- lenka@... wrote:

> I teach as well, second grade. This is my fifth

> year teaching young

> kids and it's getting more and more challenging. My

> work tries to

> accomodate but it's so difficult not to be on my

> feet most of the

> day. Teaching is a good job in that I can define

> the pacing to some

> extent throught the day. I do a lot of small groups

> where I sit with

> 5-8 kids. It is physically demanding, though, no

> way around it. I'm

> trying to work on more tricks to simplify. But

> isn't that a common

> story for all teachers ?

> I'm trying to break into a writing career since my

> hands are great

> and I can type no problem. That would help fatigue

> and standing too

> long immensely. Not so easy to do, though.

>

>

>

[Guest guest]

This is the first time I have heard someone else describe teaching as

" physically demanding " . Thank you for letting me know it isn't all in my head.

I teach as well, second grade. This is my fifth year teaching young

kids and it's getting more and more challenging. My work tries to

accomodate but it's so difficult not to be on my feet most of the

day. Teaching is a good job in that I can define the pacing to some

extent throught the day. I do a lot of small groups where I sit with

5-8 kids. It is physically demanding, though, no way around it. I'm

trying to work on more tricks to simplify. But isn't that a common

story for all teachers ?

I'm trying to break into a writing career since my hands are great

and I can type no problem. That would help fatigue and standing too

long immensely. Not so easy to do, though.

[Guest guest]

In a message dated 9/7/2001 10:31:47 PM Central Daylight Time,

kdleach2@... writes:

> This is the first time I have heard someone else describe teaching as

> " physically demanding " . Thank you for letting me know it isn't all in my

> head.

>

>

>

, I taught for 11 years, the last five as a special ed. teacher.

Teaching is VERY physical. I had to take a disability retirement 10 years ago

because I could not handle the copious amounts of paperwork and could not

stand up long enough to be effective. I hated to leave my kids, but it was

for the best. I did not realize how tired I was everyday until after I had

quit. C

[Guest guest]

Because your additional pain can be directly linked to an activity,

I would tend to believe that it was that that has caused the

additional pain, it's so VERY easy to strain your back in this way I

know. Be kind to it and hopefully it will improve.

Best wishes and hugs, Maree.

[Guest guest]

Welcome Pat. Jan is a super person and we're lucky to have her with us.

I've got double knee replacements and have had RA & FM longterm as well. I

don't remember when I was diagnosed, but it was in my early 20's and I'm now

49. I've also considered getting the scooter. I'm looking forward to

getting to know you.

a

>

> My name is Pat and I'm from Pittsburgh,Pa.I'm 56 and have had

> Rhumatoid Arthritis & fibromyalgia for 26 years. I also have

> diabetes,high blood pressure,asthma. I've had both knees totally

> replaced. I can't walk long distances (I thick it's time for a

> scooter)

> I want to say Hi to Jan in California. I didn't know that you were a

> member here till I checked the member list. Everyone I want you to

> know that Jan is a super person.

> Pat M.

[Guest guest]

Hi Pat,

Welcome to the group! Glad you found us, wacky bunch that we are. I

agree with you, Jan is a real sweetie!

I'm Judi, age 57 chronologically, 19 mentally. I have fibro,

osteoarthritis, and Dercum's disease (a rare, very not-fun thing.)

I've found good support, friendship, and information here and hope

you do too.

Peace,

Judi in southern Indiana

--- In , " misslilac47 " <colagirl47@a...>

wrote:

>

> My name is Pat and I'm from Pittsburgh,Pa.I'm 56 and have had

> Rhumatoid Arthritis & fibromyalgia for 26 years. I also have

> diabetes,high blood pressure,asthma. I've had both knees totally

> replaced. I can't walk long distances (I thick it's time for a

> scooter)

> I want to say Hi to Jan in California. I didn't know that you were

a

> member here till I checked the member list. Everyone I want you to

> know that Jan is a super person.

> Pat M.

[Guest guest]

Welcome, Pat!

Sorry you've had RA and FMS for so many years, but I'm glad you found

us. I'm sure others here will be able to benefit from your experiences.

I agree wholeheartedly - Jan is a very special person and we're lucky to

have her here.

[ ] Hello All

>

> My name is Pat and I'm from Pittsburgh,Pa.I'm 56 and have had

> Rhumatoid Arthritis & fibromyalgia for 26 years. I also have

> diabetes,high blood pressure,asthma. I've had both knees totally

> replaced. I can't walk long distances (I thick it's time for a

> scooter)

> I want to say Hi to Jan in California. I didn't know that you were a

> member here till I checked the member list. Everyone I want you to

> know that Jan is a super person.

> Pat M.

[Guest guest]

Welcome to the group, Arianne!

Yes, many people here have various degrees of xerostomia (dry mouth).

But there are many different causes of xerostomia.

From the Harvard Family Health Guide, " What causes dry mouth - and what

treats it " :

http://www.health.harvard.edu/fhg/updates/update0603e.shtml

" Diagnosis of Dry Mouth: Symptoms, signs, causes " :

http://www.drymouth.info/practitioner/diagnosis.asp

A dry mouth brochure from the NIH National Institute of Dental and

Craniofacial Research:

http://www.nohic.nidcr.nih.gov/pubs/drymouth/dmouth.htm

I'm sorry that you are uncomfortable and wondering about what's going

on. I would advise that you make an appointment with your physician so

that the cause of your dry mouth can be investigated and treated

appropriately.

I'm looking forward to hearing the rest of your story.

[ ] Hello all

> Hi, I am a new member who has been lurking for about a week. I have

> OA, and was diagnosed 3 1/2 years ago.

> I am 64 years old.

> I will tell you all about me but I have a question I would like

> answered.

> For about a month I have been experiencing severe dry mouth. I wake

> up in the morning and literally can't talk, my mouth is so dry.

> Throughout the day I either chew gum or have a hard candy in my

> mouth. I did web searches about this and one of the articles I read

> mentioned that people with RA or OA can experience this problem. I

> was wondering if anyone in the group suffers from this.

> There was also another type of Arthritis mentioned that can cause

> this.

> I am concerned about it, but otherwise I feel well. I am on

> medications, some of which mentions dry mouth, but why all of a

> sudden should it happen when I have been on the medications for some

> time.

> Any info you can give me is appreciated.

> Arianne

[Guest guest]

Arianne

I am a " new Lurker " also. I have the same problem, in the AM it seems like

my lips are stuck to my teeth, and also dry eyes and nose. They Rheumy told me

this is " secondary Sjorgrens " - dry eye syndrome. I now use liquid tears, and

a product called salivert - it is a type of spray that you put in our mouth

to help with fluid. It really helps. Plus I dring tons of water - never go

any place without your water bottle. You can look in the dental sectionof the

drug store to find a few brands of products - toothpaste- mouth wash that

specialize in this kind of probem, and do not contain any drying agents -

Hope this helps,

Gentle Hugs & Prayers,

Carol M.

[Guest guest]

> Welcome to the group, Arianne!

>

> Yes, many people here have various degrees of xerostomia (dry

mouth).

> But there are many different causes of xerostomia.

>

>

> > Thank you . I read the links you supplied and found them

enlightening.

I will call my doctor's office to see what he has to say about it.

Thanks again,

Arianne

>

> >

[Guest guest]

> Arianne

> I am a " new Lurker " also. I have the same problem, in the AM it

seems like

> my lips are stuck to my teeth, and also dry eyes and nose. They

Rheumy told me

> this is " secondary Sjorgrens " - dry eye syndrome.

I'm sorry you are going through this also, Carol.

I don't have dry eyes, but my nasal passages are dry.

While at my dentist 2 weeks ago, she gave me samples of a product

that makes a toothpaste, mouthwash, a gel-like substance you wipe on

the tongue, and chewing gum. they were all samples.

I am a mouth breather also which doesn't help, and we have forced hot

air heating system. In fact, it is a brand new heater. Wonder if that

has anything to do with it?

I am going to try opening my window a bit when I go to bed tonight to

see if that helps.

Thanks,

Arianne