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Welcome to this wonderful group Snow!

I am 42 and have recently been diagnosed with Lupus. Sjorgens, and Fibro. I

also suffer from Raynaud's, Miitral Valve Prolapse and hypothyroidism. My

last rheumy appt. showed elevated RF, so he is wondering if I am developing

RA along with everything else.

Hugs,

Sandy

>I am SNOWWHITE2000....I am 55 years old. I have fibro..Osteo A and

>periferial neuropathy(SP). I belong to another group but a friend

>told

>me about this one so I am here to see how many have what I do :). I

>also have COPD....which is starting to get worse along with

>everything

>else. Thanx to Shirley and I will look forward to getting the posts.

>

>SNOW

>

>

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>1/936/4/_/478567/_/954776379/

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

>

>URL to change your membership options:

/group/

>RA-support website: http://www.rasupport.webprovider.com/

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

>

>

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Welcome Snow. I'm glad you found us. I'm a 45, and have

some unknown type of inflammatory arthritis, fibro, and OP.

I'm on Enbrel, fosamax, vicoden voltaren, zoloft, MSM and trazadone.

I'm pretty stable, but my sed rate is still to high, and my doc wants

me to consider MTX injections. If it's still really high at next month's

visit, I'll start it. We have a very supportive group here. I hope you

enjoy it as much as I do.

a

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

From: " SNOWWHITE2000 " <mlamb1@...>

< egroups>

Sent: Monday, April 03, 2000 11:39 AM

Subject: [ ] Hello

> I am SNOWWHITE2000....I am 55 years old. I have fibro..Osteo A and

> periferial neuropathy(SP). I belong to another group but a friend

> told

> me about this one so I am here to see how many have what I do :). I

> also have COPD....which is starting to get worse along with

> everything

> else. Thanx to Shirley and I will look forward to getting the posts.

>

> SNOW

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/4/_/478567/_/954776379/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

>

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Snow,

Welcome to our list. We have a great group of members here who are good

about sharing their stories and experiences. We also love to talk about

chocolate and our pets because you can't be serious all the time.

Hope you enjoy the group.

Pat

At 03:39 PM 04/03/2000 +0000, you wrote:

>I am SNOWWHITE2000....I am 55 years old. I have fibro..Osteo A and

>periferial neuropathy(SP). I belong to another group but a friend

>told

>me about this one so I am here to see how many have what I do :). I

>also have COPD....which is starting to get worse along with

>everything

>else. Thanx to Shirley and I will look forward to getting the posts.

>

>SNOW

>

>

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>1/936/4/_/478567/_/954776379/

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

>

>URL to change your membership options: /group/

>RA-support website: http://www.rasupport.webprovider.com/

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

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Welcome SnowWhite to the group :)

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

From: SNOWWHITE2000 <mlamb1@...>

< egroups>

Sent: Monday, April 03, 2000 11:39 AM

Subject: [ ] Hello

> I am SNOWWHITE2000....I am 55 years old. I have fibro..Osteo A and

> periferial neuropathy(SP). I belong to another group but a friend

> told

> me about this one so I am here to see how many have what I do :). I

> also have COPD....which is starting to get worse along with

> everything

> else. Thanx to Shirley and I will look forward to getting the posts.

>

> SNOW

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/4/_/478567/_/954776379/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

>

>

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  • 1 month later...
Guest guest

Welcome Verna. You've come to what many of us call the best

on the web. There are many of us that share your problems and

understand what you're going through. Your psychologist gave you

very good advise. Since getting on the web, I have learned so much

about my diseases and their treatments, but best of all I've met so

many others that also have the same problems. The only people that

truly understand how I feel are fellow list members. I don't feel

so alone anymore. I hope this list helps you as much as it does me.

You were smart to get help with your household chores. I still have 2

teenagers home

to help me, but when they spread their wings, I'll have to get help too.

There is

nothing worse than sitting in a dirty house with no energy and to much pain

to clean

it.

Parrot rescue sounds pretty interesting. We have lots of pet lovers here

and

we like to talk about our furry/feathered friends too. I have 2 dogs, a

golden

retriever and a rotweiler. I am currently nursing a baby rabbit that my

dear daughter rescued. I've nursed many baby rabbits, and none this young

have every made it. This little one didn't even have it's eyes opened. I

gave it

little hope, but was persistent with the eye dropper. After the second day,

he started

drinking out of it really good. The little bugger started eating

grass today! He's going to make it! Now I have to hope that when I let him

go

at our favorite campsite that he will ok. His natural fear of people may be

gone.

I guess we'll see what happens when he's in the woods.

a

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

From: Verna <vabparrots@...>

< egroups>

Sent: Thursday, May 11, 2000 8:05 PM

Subject: [ ] Hello

> My name is Verna I was Diagnoised with Fibromyliaga 10 yrs ago. and My

life

> was hell. Someone from one of my bird list turned me on to your list.

> Along with Fibro I have

> Degenetive Disc Disease of my neck and back

> Tackacardia

> Mytrial valve prolapse

> Bursitis in both hips

> Total knee replacement Rt knee

> Anexity

> Depression

> I'm sure there must be something else but I won't let the Drs do anymore

> testing.

> I have no living children, and am seperated from my alchol and drug

addited

> husband. and am on disability,

> I do have a mentally handicaped foster daughter, one cat 3 birds of my

own,

> and I do parrot rescue.

> I had to give in this year and get a homemaker comes in 6 1/2 hr a week to

> help me with things I can't do.

> I bought a computer on the recomendation of my psycologist to keep my

mind

> and my hands busy.

> I love hockey and have season tickets to the Providence Bruins .

> I don't know what else to say about my self.

> Verna

>

>

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

> There's still time to order Calyx & Corolla flowers for mom.

> These fresh and elegant bouquets are available for delivery

> by Mother's Day. To order, please visit

> 1/4103/6/_/478567/_/958089302/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

>

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Guest guest

Thanks for the welcome I've been reading a lot of the mail and I feel funny

being here cause all of you have Lupus, RA, or Polymyalgia, and I only have

Fibro and other medical problems, Are you sure you want me here?

Verna

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

From: a <aA@...>

< egroups>

Sent: Thursday, May 11, 2000 9:58 PM

Subject: Re: [ ] Hello

> Welcome Verna. You've come to what many of us call the best

> on the web. There are many of us that share your problems and

> understand what you're going through. Your psychologist gave you

> very good advise. Since getting on the web, I have learned so much

> about my diseases and their treatments, but best of all I've met so

> many others that also have the same problems. The only people that

> truly understand how I feel are fellow list members. I don't feel

> so alone anymore. I hope this list helps you as much as it does me.

>

> You were smart to get help with your household chores. I still have 2

> teenagers home

> to help me, but when they spread their wings, I'll have to get help too.

> There is

> nothing worse than sitting in a dirty house with no energy and to much

pain

> to clean

> it.

> Parrot rescue sounds pretty interesting. We have lots of pet lovers here

> and

> we like to talk about our furry/feathered friends too. I have 2 dogs, a

> golden

> retriever and a rotweiler. I am currently nursing a baby rabbit that my

> dear daughter rescued. I've nursed many baby rabbits, and none this young

> have every made it. This little one didn't even have it's eyes opened. I

> gave it

> little hope, but was persistent with the eye dropper. After the second

day,

> he started

> drinking out of it really good. The little bugger started eating

> grass today! He's going to make it! Now I have to hope that when I let

him

> go

> at our favorite campsite that he will ok. His natural fear of people may

be

> gone.

> I guess we'll see what happens when he's in the woods.

>

> a

>

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

> From: Verna <vabparrots@...>

> < egroups>

> Sent: Thursday, May 11, 2000 8:05 PM

> Subject: [ ] Hello

>

>

> > My name is Verna I was Diagnoised with Fibromyliaga 10 yrs ago. and My

> life

> > was hell. Someone from one of my bird list turned me on to your list.

> > Along with Fibro I have

> > Degenetive Disc Disease of my neck and back

> > Tackacardia

> > Mytrial valve prolapse

> > Bursitis in both hips

> > Total knee replacement Rt knee

> > Anexity

> > Depression

> > I'm sure there must be something else but I won't let the Drs do anymore

> > testing.

> > I have no living children, and am seperated from my alchol and drug

> addited

> > husband. and am on disability,

> > I do have a mentally handicaped foster daughter, one cat 3 birds of my

> own,

> > and I do parrot rescue.

> > I had to give in this year and get a homemaker comes in 6 1/2 hr a week

to

> > help me with things I can't do.

> > I bought a computer on the recomendation of my psycologist to keep my

> mind

> > and my hands busy.

> > I love hockey and have season tickets to the Providence Bruins .

> > I don't know what else to say about my self.

> > Verna

> >

> >

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

> > There's still time to order Calyx & Corolla flowers for mom.

> > These fresh and elegant bouquets are available for delivery

> > by Mother's Day. To order, please visit

> > 1/4103/6/_/478567/_/958089302/

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

> >

> > URL to change your membership options:

> /group/

> > RA-support website: http://www.rasupport.webprovider.com/

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

> >

>

>

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

> There's still time to order Calyx & Corolla flowers for mom.

> These fresh and elegant bouquets are available for delivery

> by Mother's Day. To order, please visit

> 1/4103/6/_/478567/_/958096590/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

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Guest guest

Hi Verna......welcome to our group :)

~ Esther & Carol ~

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

From: Verna <vabparrots@...>

< egroups>

Sent: Thursday, May 11, 2000 8:05 PM

Subject: [ ] Hello

> My name is Verna I was Diagnoised with Fibromyliaga 10 yrs ago. and My

life

> was hell. Someone from one of my bird list turned me on to your list.

> Along with Fibro I have

> Degenetive Disc Disease of my neck and back

> Tackacardia

> Mytrial valve prolapse

> Bursitis in both hips

> Total knee replacement Rt knee

> Anexity

> Depression

> I'm sure there must be something else but I won't let the Drs do anymore

> testing.

> I have no living children, and am seperated from my alchol and drug

addited

> husband. and am on disability,

> I do have a mentally handicaped foster daughter, one cat 3 birds of my

own,

> and I do parrot rescue.

> I had to give in this year and get a homemaker comes in 6 1/2 hr a week to

> help me with things I can't do.

> I bought a computer on the recomendation of my psycologist to keep my

mind

> and my hands busy.

> I love hockey and have season tickets to the Providence Bruins .

> I don't know what else to say about my self.

> Verna

>

>

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

> There's still time to order Calyx & Corolla flowers for mom.

> These fresh and elegant bouquets are available for delivery

> by Mother's Day. To order, please visit

> 1/4103/6/_/478567/_/958089302/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

>

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Share on other sites

Guest guest

Welcome Lonna! We have many dog lovers on this list, and I for one will be

patiently waiting for news of your new arrivals!

You must really be good at training dogs to be able to handle them from a

wheelchair. Mine would pull me so far that they would have to send out a

search party to find me LOL!

Of course she was never leash trained because we are in the country and

there isn't a need. UNTIL NOW! My mom is my neighbor, and she has a

standard poodle pup that is 6 months old. We watch each others dogs when we

go away, and my

rottie just wants to eat her pup! I think the problem is the leash. My

rottie is just not used to being put on a leash, and it interrupts the

natural " getting to know you dance " that they do when them meet another dog.

But since my rottie is showing aggression, we're afraid to let her off of

the leash. It is so surprising to see her acting this way since I see her

out in the field playing with stray dogs that wander by.

I am 45 and was diagnosed with RA in my early 20's. Knee replacements have

saved me from a full time wheelchair, but my ankles may put me in one. I

hope the meds I am on will stop the progression. I am on Enbrel and

Voltaren which is helping a lot.

Good luck learning to live with a man LOL!

a

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

From: Lonna Fisher <lonnagrd@...>

Arthritis list < egroups>; GSD email list

<gsdsegroups>

Sent: Wednesday, May 17, 2000 3:24 PM

Subject: [ ] Hello

> Hi Everyone,

> Just thought I would introduce myself.

> My name is Lonna, I am 47 years old and have had Rheumatoid Arthritis

> since the age of 20, I use a wheelchair (manual) and/or cane to get

> around. I am finding I depend on my chair more as I age, but still can

> do most of my own housekeeping - mopping, vacuuming, dishes etc.

> ............... a good thing right! .................. smile

>

> I have been raising and showing dogs since 1972, I started with Shelties

> but switched to German Shepherds in 1976. I normally only have 3 - 5

> adults and one to two litters a year, it sure gives me a reason to keep

> as active as possible ........................ LOL

>

> I had lived in BC, Canada all my life until July/99 when I moved to

> Alberta, for the drier air, more dog shows and I have some family here

> too.

>

> A while ago I met a man and he has just moved into my house, so I am now

> learning what it is like to live with one ................ very

> interesting to say the least ............... grin

>

> In the next two months I am expecting two litters of puppies, a very

> much planned and wanted event ............... though maybe you should

> ask me again in 2 months ...................... smile

>

> That is it for now,

> Take care,

> Lonna and the Sunflower Shepherds

> http://members.tripod.com/~lonnagsd/index.html

>

>

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

> Was the salesman clueless? Productopia has the answers.

> 1/3019/6/_/478567/_/958591532/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

>

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Guest guest

Welcome Lonna.......we know you will enjoy this fine group of people :)

~ Esther, 30 who has arthritis......Carol, 53, her mother~

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

From: Lonna Fisher <lonnagrd@...>

Arthritis list < egroups>; GSD email list

<gsdsegroups>

Sent: Wednesday, May 17, 2000 3:24 PM

Subject: [ ] Hello

> Hi Everyone,

> Just thought I would introduce myself.

> My name is Lonna, I am 47 years old and have had Rheumatoid Arthritis

> since the age of 20, I use a wheelchair (manual) and/or cane to get

> around. I am finding I depend on my chair more as I age, but still can

> do most of my own housekeeping - mopping, vacuuming, dishes etc.

> ............... a good thing right! .................. smile

>

> I have been raising and showing dogs since 1972, I started with Shelties

> but switched to German Shepherds in 1976. I normally only have 3 - 5

> adults and one to two litters a year, it sure gives me a reason to keep

> as active as possible ........................ LOL

>

> I had lived in BC, Canada all my life until July/99 when I moved to

> Alberta, for the drier air, more dog shows and I have some family here

> too.

>

> A while ago I met a man and he has just moved into my house, so I am now

> learning what it is like to live with one ................ very

> interesting to say the least ............... grin

>

> In the next two months I am expecting two litters of puppies, a very

> much planned and wanted event ............... though maybe you should

> ask me again in 2 months ...................... smile

>

> That is it for now,

> Take care,

> Lonna and the Sunflower Shepherds

> http://members.tripod.com/~lonnagsd/index.html

>

>

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

> Was the salesman clueless? Productopia has the answers.

> 1/3019/6/_/478567/_/958591532/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

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Guest guest

Welcome, Lonna! Nice to see another doggy person on the list! A

pity you don't still live in BC, then I could come help socialize

your puppies (I live in the Seattle area)! :-)

I'm Susie, 32, married for almost 2 years, no human kids but two

furry ones. I had JRA at 15, in remission at 16, then RA hit me at

22. I took Methotrexate (MTX) solo for years. After Enbrel came to

market, I started on that, and now take it with MTX. My worst joints

are my knees, though I have fused wrists and shoulder involvement as

well. My drug combo does me well most of the time.

Now, DOGS, hmmm, maybe I shouldn't get started, but I'm excited to

see another " fancier " on the list! I have 2 Labs, one a rescue, the

other a well-bred puppy with show potential. I'm finding it hard to

show my own dog with my clumsy gait - do you do have a handler? (Oh,

geez,do they " double handle " GSDs in Canada too??? Anyone with RA

would never survive the amount of gaiting I see here!!) I am also

working on obedience and hunt tests with him, but we need some more

maturity to be successful! I enjoy training, and one reason I got

this pup was to give me an activity outside the home and make some

new friends in Washington (I'm originally from Oregon). I love my

doggy friends - there isn't a single one of them who give a rip about

MY gait! Oh, am I gonna have questions for you about showing in

Canada - I'm seriously considering starting our " career " there since

Canadian judges are more apt to put up an athletic, lean Labrador.

US judges put up FAT, and I refuse to put weight on my dog just to

win. OK, that's enough doggy stuff for now, I knew I shouldn't get

started...

Good luck with your man, it sure is a learning experience! He must

be a decent guy to live with a " crazy dog lady " though! And lots of

luck with the puppies - keep us updated!! Again, welcome!

Susie

Lonna Fisher <lonnagrd@t...> wrote:

> Hi Everyone,

> Just thought I would introduce myself.

> My name is Lonna, I am 47 years old and have had Rheumatoid

Arthritis

> since the age of 20, I use a wheelchair (manual) and/or cane to get

> around. I am finding I depend on my chair more as I age, but still

can

> do most of my own housekeeping - mopping, vacuuming, dishes etc.

> ............... a good thing right! .................. smile

>

> I have been raising and showing dogs since 1972, I started with

Shelties

> but switched to German Shepherds in 1976. I normally only have 3 - 5

> adults and one to two litters a year, it sure gives me a reason to

keep

> as active as possible ........................ LOL

>

> I had lived in BC, Canada all my life until July/99 when I moved to

> Alberta, for the drier air, more dog shows and I have some family

here

> too.

>

> A while ago I met a man and he has just moved into my house, so I

am

now

> learning what it is like to live with one ................ very

> interesting to say the least ............... grin

>

> In the next two months I am expecting two litters of puppies, a very

> much planned and wanted event ............... though maybe you

should

> ask me again in 2 months ...................... smile

>

> That is it for now,

> Take care,

> Lonna and the Sunflower Shepherds

> http://members.tripod.com/~lonnagsd/index.html

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Guest guest

Verna,

A cat and 2 parrots? Hmmmmm. Your cat must be very tolerant.

Sorry you're in a fibro flare. I hope you feel better soon.

a

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

From: Verna <vabparrots@...>

< egroups>

Sent: Thursday, May 18, 2000 4:05 PM

Subject: [ ] Hello

> Hi everyone

> here it is 3:50 pm and I'm doing nothing, didn't get out of bed today

until

> almost noon time. I woke up with 2 parrots and a cat in bed with me.

>

> Last night Drove 45 min to catch a bus for a 2 1/2 drive to a hockey game

> ( we lost ) I'm not in a lot of pain but I feel like I have 50 ton weight

> I'm carrying around, I haven't felt this tired in a long time. and I can't

> shake it. Oh well my friend Fibro is back for awhile I guess.

>

> Thanks for all the info on Fibro I just saved it all to read later, I

can't

> seem to concertrate today.

>

> Talk to all you later

> Verna

>

>

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

> Up to 60% OFF food!

> Buy Now and Shipping is Free.

> 1/4016/6/_/478567/_/958679794/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

>

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Guest guest

Sorry you aren't feeling good, Verna. Glad you got to go to a hockey game

even if your team lost.

Have a better day tomorrow!

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

From: " Verna " <vabparrots@...>

< egroups>

Sent: Thursday, May 18, 2000 3:05 PM

Subject: [ ] Hello

> Hi everyone

> here it is 3:50 pm and I'm doing nothing, didn't get out of bed today

until

> almost noon time. I woke up with 2 parrots and a cat in bed with me.

>

> Last night Drove 45 min to catch a bus for a 2 1/2 drive to a hockey game

> ( we lost ) I'm not in a lot of pain but I feel like I have 50 ton weight

> I'm carrying around, I haven't felt this tired in a long time. and I can't

> shake it. Oh well my friend Fibro is back for awhile I guess.

>

> Thanks for all the info on Fibro I just saved it all to read later, I

can't

> seem to concentrate today.

>

> Talk to all you later

> Verna

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Guest guest

.......we also think that your " candle day " idea is a great one!

Esther

is in a wedding.......attending the guest book and favors on that date in

Lancaster, Pa. so we will be leaving around lunchtime. But we can light

the candle and pray in the morning :)

~ Esther & Carol ~

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

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Monday, May 22, 2000 10:32 PM

Subject: [ ] hello

> Hi ,

> Glad you posted, sorry to hear you are having a flare. Maybe your next

> remicade appointment will help with that. I will know in two weeks if it

> is remicade or a study. I am anxious for either one, I have been in a lot

> of pain.

> I was so happy to read about your poetry meetings. I sounds like you

> really enjoy them, kind of the way I enjoy school. Just getting out with

> other people is a big help. I like your idea of another candle prayer

day.

> I will definitely be part of it. Last time I got up early to lite my

> candle but had to blow it out early because that was the week-end I went

to

> burg, Virginia.

> Good to hear from you!

>

>

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

> Missing old school friends? Find them here:

> 1/4055/6/_/478567/_/959049234/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

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

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  • 2 months later...

Hi Holly,

I was close to your age when I was diagnosed, and that was 25 years ago. I

have 2 very healthy children, a 19 year old daughter and a 16 year old son.

Since everyone reacts differently to this disease, it is impossible to

predict the progression. For me it was a slow progression, for others they

wake up one day and every joint is inflamed. Pregnancy also affects us

differently. One put me in remission, and one flared it. There is a high

number of people that go into remission during pregnancy, which made the

researchers look into a hormone connection, but so far there is no proof

that hormones are involved.

You should discuss having children with your doctor. Your meds have a lot

to do with the risks of pregnancy. Some meds are to toxic, but there are

some that can be taken.

The people that make it seem like no big deal may not understand the life

threatening potential of RA. If RA is treated and controlled, the effects

are not as catastrophic, but if you don't respond to medicine, or have very

aggressive RA, it can go to you internal organs. To me it is a very big

deal because it changed me from a gymnast to a cripple. For many years I

thought it was no big deal and I self medicated with herbs and vitamins.

All the while my bones were eroding. When I was first diagnosed, I took

all of the RA drugs for the first few years, but when I found out how toxic

they were, I stopped taking all meds and tried to cure myself. I believe

that alternative medicine can help, but it must be under a doctor's care

when you are dealing with a disease like RA. I've already had both knees

replaced, and I need ankles and soon will need elbows. The best defense

against this disease is to educate yourself.

May I ask what meds you are on? The best chance of remission comes in the

first 2 years of diagnoses. I've had good luck with Enbrel for almost 2

years, but it is loosing it's effectiveness, so I'm looking at different

options. I've heard many people have luck with Arava, so maybe that is

next.

a

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

From: <hrambaugh@...>

< egroups>

Sent: Thursday, August 17, 2000 5:27 AM

Subject: [ ] Hello

> Hi Everyone,

>

> My name is Holly and I live in Australia. I'm 19 and was diagnosed

> with RA around the time of my 18th birthday- almost exactly two years

> ago. I just found this site today and thought it'd be good to be able

> to talk to some other people with RA, particularly anyone around my

> own age and just see how RA affects other people and how they handle

> it.

>

> Can anyone tell me anything about realistic long term effects of the

> disease? I'm never really sure of whether or not the information I

> hear and read is accurate..some people tend to make things sound

> worse, while others think it's no big deal.

>

> Something else I'm curious about is having kids. I have no immediate

> plans to go and have any, but I'm a little worried that when I do

> decide to, I'll be in a lot of pain due to having to stop my

> medication. So if any mothers out there have something to say about

> it, I'd love to hear from you.

>

> Anyway, that's all from me for now, I hope to hear from you guys soon!

>

> Holly

>

>

>

>

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

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

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

>

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Welcome to the group Holly. I am sure all your questions will be answered

here. This group is full of wonderful people.

----------

> From: hrambaugh@...

> egroups

> Subject: [ ] Hello

> Date: Thursday, August 17, 2000 5:27 AM

>

> Hi Everyone,

>

> My name is Holly and I live in Australia. I'm 19 and was diagnosed

> with RA around the time of my 18th birthday- almost exactly two years

> ago. I just found this site today and thought it'd be good to be able

> to talk to some other people with RA, particularly anyone around my

> own age and just see how RA affects other people and how they handle

> it.

>

> Can anyone tell me anything about realistic long term effects of the

> disease? I'm never really sure of whether or not the information I

> hear and read is accurate..some people tend to make things sound

> worse, while others think it's no big deal.

>

> Something else I'm curious about is having kids. I have no immediate

> plans to go and have any, but I'm a little worried that when I do

> decide to, I'll be in a lot of pain due to having to stop my

> medication. So if any mothers out there have something to say about

> it, I'd love to hear from you.

>

> Anyway, that's all from me for now, I hope to hear from you guys soon!

>

> Holly

>

>

>

>

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

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

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

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Wow, I've never had so many emails in my inbox before...

Hi a,

Thanks very much for replying to my message. You sound like you've really

been ravaged by RA. I had been wondering if medication can lose it's

effectiveness, and now I know it can. I hope you manage to find medication

that helps you.

I'm on Methotrexate (20 mg a week), Plaquenil (100mg a day), Naproxen (750

mg a day), Predisolone (6 mg a day), Salazopyrin (I can't remember the

dosage, but it's 3 tablets a day). I also take calcium supplements, and

folic acid. I was taking Neoral before I went on to Salazopyrin, but it

raised my blood pressure pretty high and it didn't seem to be doing

anything, so my rheumatologist and I decided to go off it.

Holly

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Wow, Holly, you are on a roster of meds. I was on Neoral for a while and

noticed no improvement either. However, it was probably doing one good

thing for me - raising my BP a little. Mine tends to run almost comatose

- usually around 100/54 or even lower. If I'm in pain or upset, then it's

in the " normal " range of 120/80. *G*

Jenna

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Jenna,

Yes indeedy, I do seem to be taking a lot of medication. It made me laugh

last week when the pharmacist even commented on it...it must be a lot for a

pharmacist to notice..hehe The idea behind it is my rheumatologist thinks

that if we have a whole heap of medication early on, hopefully it will stop

the RA from doing any major damage.

It's interesting that your BP is normal when you're not doing well- is that

another sympton of the disease?

Holly

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Holly,

I don't know if it's a symptom of the disease or not (low BP) but it was

pretty funny. I recently had eye surgery to remove cataracts caused by

the prednisone. When I was being prepped, with bp and so forth, the

nurse got quite a kick out of the BP. It was 98/50. He asked me if I was

breathing. LOL

Jenna

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Jenna

How long have you been on prednisone and what kind of dosage are you

on? I'm curious to know how much you have to take before it can

affect you.

I hope your eyes are doing better now too!

Holly

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Holly,

I;ve been on prednisone for 16 years. At varying dosages. Sometimes as

high as 65 mg a day, right now 9 mg a day. Been on too many bursts to

keep track of. My cataracts were very small but they were very dense and

centered. So it was hard to see at night with the glare of the lights.

Then it started getting hard to see people when they were standing in

front of bright lights, such as a window with sunshine behind it. That's

when I decided I needed to do something about it. The new lenses are

already fogged over and they will have to do lasar surgery to remove the

gel in the lenses. After that, the eye doc said that there shouldn't be

anymore problems. The good thing is, I grow new cells like there's no

tomorrow. *g* I regenerate myself quite well, I guess.

BTW, I can't get that image of the seeing eye dog bolting at the sight of

a basketball player advertisement. I KNOW there's a story in there

somewhere.

Jenna

FREE SPIRIT - Starlight Writers Publications

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Jenna,

My predisone dose is only 6 mg a day and the most I've ever taken was 15 mg.

Hopefully I won't have any eye problems at those doses.

It must be so amazingly frustrating knowing that not only do you have to

cope with RA as a joint disease, but there are just so many side issues that

seem to crop up as a consequence. I wrote a list the other day of every type

of doctor I've seen, product I've purchased and all other things that have

affected me because of RA and it's kind of a long list...hehe

I hope you keep regenerating yourself in a good way and you're eyes stay

good for a very very long time.

Speaking of story writing (the comment about the helper dog..hehe) I like

writing too. I've been writing bits and pieces since I was in primary school

and won a lil award for a short story in high school. I'm trying desperately

to start a novel. I saw a play last night called Gasping, by Ben Elton (the

English writer/comedian, I don't know if you've heard of him over there or

not). It was great, very funny and intelligent, I wish I could write like

that, so I'm going to try to get back into it. What sort of writing do you

do Jenna?

Holly

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Holly,

I write fantasy adventure, fantasy romance and children's picture books.

There are excerpts up on my web page if you want an example of the style

of writing I do. I wish I was making money at it, then I wouldn't have

to worry about income. I have tried 4 times now to go back to work, and

had a heck of a time. I just get too tired, then I get sore, and then I

get cranky, which makes me more stressed, which makes me more sore...it's

an endless circle.

If you are interested in writing, you might want to check out Romance

Foretold. It's a readers/writers/artists colony on the web. It says

Romance but it's for all genres. They just got done with a Book In A

Week writing challenge, so everyone's pretty pooped out. *g* I didn't

participate, because I have two online magazines that I am trying to get

ready for an October 1 issue.

I guess my writing is one reason why I worry about my eyes and such. I

can't sit at the computer for very long at a stretch because I just get

too stiff. So I usually write long hand in a notebook. But even that

hurts my neck and back after a while. The thing about the eye surgery is

that now I am far sighted, whereas before I was near sighted. Now, I

need glasses to read anything. Just a slight correction to drive at

night. I don't wear the glasses during the day at all, just at night or

in the rain. But I now need glasses to read, or view the computer

screen. Things like that. You should have seen me several weeks ago. I

had reading glasses, sunglasses, distance glasses, computer glasses - all

because the new lenses were settling into place and the prescription kept

changing. I felt like I was juggling glasses whenever I went somewhere.

LOL I could only read the newspaper by lying it on the floor and

standing over it to read. Any closer and I couldn't see it.

BTW, I do non fiction articles in one of my magazines. If anyone here

would like to write an article about living with this " hidden " disease, I

would be more than happy to take a look at it. I can't pay, but if it

would help get the word out to enlighten others, it might be worth it.

You can see the current issue of The Royal Scribe at

http://www.romfort.org/rs/ I would love to see others learn about RA.

Knowledge is power.

Jenna

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Jenna,

You sound like a very well rounded writer. It's great that even

though you're not 100% well, you still do it. Do you not have trouble

trying to write long hand? I find I'm the opposite to you. It's much

easier for me to sit at my computer and type than write by hand. I

get a few paragraphs done and have to stop coz my hand aches and my

thumb gets swollen.

Is it common for arthritics to be unable to work? I study at

university and have a part time job. Unfortunately my part time job

is at a fast food place so it requires me to stand up for the whole

shift. The week before last I had to call in sick for 2 out of three

of my shifts because my legs couldn't take it. I only work 11 hours a

week though. I'm worried that next year, when I hopefully start my

full time career, I might get too exhausted to manage. As it is, I'm

very tired and fatiguey lately.

How has everyone else coped with work? Does anyone here work

successfully or do you all struggle with it?

I might just give writing an article a go. Are there any guidelines I

need to follow?

Holly

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I struggle with working. My rheumy has told me he doesn't really want me

to work, but if I insist, no more than 15 hours a week. Yeah, try to

tell that to the creditors - or to my three kids that need clothes,

because, gosh darnit, they seem to just keep growing. So I am going to

try again. But it's hard when you have to take days off, just such as you

did. Employers get tired of the scenario after a bit. *sigh*

I used to be a transcriptionist, but I don't think my wrists could take

sitting and typing for even 4 hours a day without a break. I used to be

a medical assistant, but I don't think I could be on my feet all day

running like I used to. I used to work in a computer room, but now I

don't think I could lift those boxes of paper or those huge reports that

I used to. I am trying to think what I can do. Plus there's working

around my kids schedules at school. They are different, since I have one

in special needs. His school is one hour shorter than the others. So, I

have to be available for him. I certainly can't afford after school care

for them. It would eat up everything I made on a job. And someone has

to help them with their homework at night as well. I used to work

evenings and weekends, but that was wayyyy stressful, because I would

come home at 9pm and then spend until midnight straightening up the house

and cleaning. Then up early with the kids again. This was when they

were younger and not in school, so I couldn't even rest during the day,.

I have found that as they are getting older, I am doing better with the

RA. There isn't so much lifting and such. And they are gone during the

school day, so I can work at my own pace. If I need a nap, or just to lie

down, I can do that. If I have to go to work, I don't know how I will

get the rest.

Right now, everything is up in the air, depending on the sort of job I

can find and do.

Jenna

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