Re: So have your lives been ruined?

[Guest guest]

My friend is doing great with lupus and she has been diagnosed as a very severe

case. She had another baby while on Plaquinil. She's an active duty Army

officer and she looks terrific. Sure, life will be different, you will reel for

several weeks after being diagnosed, but like any big event, it will get

integrated into your life and you will start to feel like you again.

Kate F

beanmommy2 <beanmommy2@...> wrote:

... well, only tell me if they haven't been!

I've posted here a couple times but am new to all this. I'm 37 and was

just diagnosed with Lupus within the month or so.

A friend bought me a book called something like " Everything you need

to know about Lupus " and after reading it I feel like I want to kill

myself!

Everything sounds so awful and hopeless: Your life will never be the

same again; Your personality will change and you'll never be the same

person you were; lots of Lupus patients need anti-depressants to cope

with the effects of the disease; you have to make tough choices about

which things to cut out of your life, you need to have a support group

to talk about how much it sucks, etc, etc.

Plus the chapters of all the physical things that happen to you ...

the author keeps making the point that you can have Lupus and still

live, but I think if the rest of my life is going to be like this, I'd

rather be dead!

Please, if it's true, somebody with Lupus tell me that your life

hasn't been ruined and you get to function pretty normally and aren't

miserable all the time!

On another note, what is remission all about? Do the drugs help you go

into remission? What is the likelihood of that ever happening?

Anything you can do to help it happen? How long does remission last?

Thanks

Sad

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

Access over 1 million songs - Music Unlimited.

__________________________________________________

[Guest guest]

I have a coworker who has lupus but has been in remission ( I guess that is what

it is

called) for several years now.

Joy

beanmommy2 <beanmommy2@...> wrote:

... well, only tell me if they haven't been!

I've posted here a couple times but am new to all this. I'm 37 and was

just diagnosed with Lupus within the month or so.

A friend bought me a book called something like " Everything you need

to know about Lupus " and after reading it I feel like I want to kill

myself!

Everything sounds so awful and hopeless: Your life will never be the

same again; Your personality will change and you'll never be the same

person you were; lots of Lupus patients need anti-depressants to cope

with the effects of the disease; you have to make tough choices about

which things to cut out of your life, you need to have a support group

to talk about how much it sucks, etc, etc.

Plus the chapters of all the physical things that happen to you ...

the author keeps making the point that you can have Lupus and still

live, but I think if the rest of my life is going to be like this, I'd

rather be dead!

Please, if it's true, somebody with Lupus tell me that your life

hasn't been ruined and you get to function pretty normally and aren't

miserable all the time!

On another note, what is remission all about? Do the drugs help you go

into remission? What is the likelihood of that ever happening?

Anything you can do to help it happen? How long does remission last?

Thanks

Sad

[Guest guest]

Hi , I know I just made a post about how awful a morning I was

having, but it isn't always like this. Personality changes usually occur

when you take large doses of Prednisone. Anti-depressants are typically

prescribed not because of a mental condition, but because people with

chronic pain have the same symptoms as depression. I still managed to

accomplish many things throughout the years, you just learn to listen to how

your body is reacting and not to push too much. There are new drugs

available lately that have given many people relief, although not totally,

but they have drastically improved my quality of life. The most important

thing is to get the proper treatment needed from a qualified Rheumatologist.

I found a great support group, here. Knowledge is power and there are many

topics discussed here that have been helpful to me. Feel free to post your

concerns or email me directly if you just want to 'talk'.

Do something nice for yourself today. I buy myself fresh flowers. They are

nice to look at and pick up my spirits a bit.

Joanne

[ ] So have your lives been ruined?

> ... well, only tell me if they haven't been!

>

> I've posted here a couple times but am new to all this. I'm 37 and was

> just diagnosed with Lupus within the month or so.

>

> A friend bought me a book called something like " Everything you need

> to know about Lupus " and after reading it I feel like I want to kill

> myself!

>

> Everything sounds so awful and hopeless: Your life will never be the

> same again; Your personality will change and you'll never be the same

> person you were; lots of Lupus patients need anti-depressants to cope

> with the effects of the disease; you have to make tough choices about

> which things to cut out of your life, you need to have a support group

> to talk about how much it sucks, etc, etc.

>

> Plus the chapters of all the physical things that happen to you ...

> the author keeps making the point that you can have Lupus and still

> live, but I think if the rest of my life is going to be like this, I'd

> rather be dead!

>

> Please, if it's true, somebody with Lupus tell me that your life

> hasn't been ruined and you get to function pretty normally and aren't

> miserable all the time!

>

> On another note, what is remission all about? Do the drugs help you go

> into remission? What is the likelihood of that ever happening?

> Anything you can do to help it happen? How long does remission last?

>

> Thanks

> Sad

>

>

>

>

>

[Guest guest]

,

I'm 38 and an ACTIVE stay at home/work from home Mommy of 2... Just a

caveat and something I have noticed about this board. Keep in mind that the

people who may respond to your post are those that are isolated, home and by

their computers. Meaning some of them have more severe disease. Keep the

posts in perspective. Remember there are many people out there living their

lives to the full.

Staying positive and being full of gratitude for all that you DO have will

serve you well...Now and always..

Hope you find this helpful...

Annie

>From: " beanmommy2 " <beanmommy2@...>

>Reply-

>

>Subject: [ ] So have your lives been ruined?

>Date: Wed, 13 Dec 2006 16:15:11 -0000

>

>... well, only tell me if they haven't been!

>

>I've posted here a couple times but am new to all this. I'm 37 and was

>just diagnosed with Lupus within the month or so.

>

>A friend bought me a book called something like " Everything you need

>to know about Lupus " and after reading it I feel like I want to kill

>myself!

>

>Everything sounds so awful and hopeless: Your life will never be the

>same again; Your personality will change and you'll never be the same

>person you were; lots of Lupus patients need anti-depressants to cope

>with the effects of the disease; you have to make tough choices about

>which things to cut out of your life, you need to have a support group

>to talk about how much it sucks, etc, etc.

>

>Plus the chapters of all the physical things that happen to you ...

>the author keeps making the point that you can have Lupus and still

>live, but I think if the rest of my life is going to be like this, I'd

>rather be dead!

>

>Please, if it's true, somebody with Lupus tell me that your life

>hasn't been ruined and you get to function pretty normally and aren't

>miserable all the time!

>

>On another note, what is remission all about? Do the drugs help you go

>into remission? What is the likelihood of that ever happening?

>Anything you can do to help it happen? How long does remission last?

>

>Thanks

>Sad

>

>

_________________________________________________________________

View Athlete’s Collections with Live Search

http://sportmaps.live.com/index.html?source=hmemailtaglinenov06 & FORM=MGAC01

[Guest guest]

Someone posted this on another forum I'm on, I found it very inspirational.

No, life may never be the same again, but it's not over. Take time to

grieve for what you've lost, but make the most of the life you have!

On Nov. 18, 1995, Itzhak *Perlman*, the violinist, came on stage to give a

concert at Avery Fisher Hall at Lincoln Center in New York City. If you have

ever been to a *Perlman* concert, you know that getting on stage is no small

achievement for him. He was stricken with polio as a child, and so he has

braces on both legs and walks with the aid of two crutches. To see him walk

across the stage one step at a time, painfully and slowly, is an awesome

sight.

He walks painfully, yet majestically, until he reaches his chair. Then he

sits down, slowly, puts his crutches on the floor, undoes the clasps on his

legs tucks one foot back and extends the other foot forward. Then he bends

down and picks up the violin, puts it under his chin, nods to the conductor

and proceeds to play.

By now, the audience is used to this ritual. They sit quietly while he makes

his way across the stage to his chair. They remain reverently silent while

he undoes the clasps on his legs. They wait until he is ready to play.

But this time, something went wrong. Just as he finished the first few bars,

one of the strings on his violin broke. You could hear it snap - it went off

like gunfire across the room. There was no mistaking what that sound meant.

There was no mistaking what he had to do. We figured that he would have to

get up, put on the clasps again, pick up the crutches and limp his way off

stage - to either find another violin or else find another string for this

one. But he didn't. Instead, he waited a moment, closed his eyes and then

signaled the conductor to begin again.

The orchestra began, and he played from where he had left off. And he played

with such passion and such power and such purity as they had never heard

before.

Of course, anyone knows that it is impossible to play a symphonic work with

just three strings. I know that, and you know that, but that night Itzhak *

Perlman* refused to know that.

You could see him modulating, changing, re-composing the piece in his head.

At one point, it sounded like he was de-tuning the strings to get new sounds

from them that they had never made before. When he finished, there was an

awesome silence in the room. And then people rose and cheered. There was an

extraordinary outburst of applause from every corner of the auditorium. We

were all on our feet, screaming and cheering, doing everything we could to

show how much we appreciated what he had done.

He smiled, wiped the sweat from this brow, raised his bow to quiet us, and

then he said - not boastfully, but in a quiet, pensive, reverent tone - " You

know, sometimes it is the artist's task to find out how much music you can

still make with what you have left. "

What a powerful line that is. It has stayed in my mind ever since I heard

it.

And who knows? Perhaps that is the definition of life - not just for artists

but for all of us. Here is a man who has prepared all his life to make music

on a violin of four strings, who, all of a sudden, in the middle of a

concert, finds himself with only three strings; so he makes music with three

strings, and the music he made that night with just three strings was more

beautiful, more sacred, more memorable, than any that he had ever made

before, when he had four strings.

So, perhaps our task in this shaky, fast-changing, bewildering world in

which we live is to make music, at first with all that we have, and then,

when that is no longer possible, to make music with what we have left.

On 12/13/06, beanmommy2 <beanmommy2@...> wrote:

>

> ... well, only tell me if they haven't been!

>

> I've posted here a couple times but am new to all this. I'm 37 and was

> just diagnosed with Lupus within the month or so.

>

> A friend bought me a book called something like " Everything you need

> to know about Lupus " and after reading it I feel like I want to kill

> myself!

>

> Everything sounds so awful and hopeless: Your life will never be the

> same again; Your personality will change and you'll never be the same

> person you were; lots of Lupus patients need anti-depressants to cope

> with the effects of the disease; you have to make tough choices about

> which things to cut out of your life, you need to have a support group

> to talk about how much it sucks, etc, etc.

>

> Plus the chapters of all the physical things that happen to you ...

> the author keeps making the point that you can have Lupus and still

> live, but I think if the rest of my life is going to be like this, I'd

> rather be dead!

>

> Please, if it's true, somebody with Lupus tell me that your life

> hasn't been ruined and you get to function pretty normally and aren't

> miserable all the time!

>

> On another note, what is remission all about? Do the drugs help you go

> into remission? What is the likelihood of that ever happening?

> Anything you can do to help it happen? How long does remission last?

>

> Thanks

> Sad

>

>

>

>

--

Shoreview, MN, until April! brrrr!

South Pasadena, CA

You can see my galleries at http://www.pbase.com/arenared986

[Guest guest]

,

Please don't despair.

Not every person with lupus has severe disease. Many have a mild course.

Your life does not have to be ruined even if you have aggressive disease.

Remission is the goal, but, unfortunately, it's impossible to predict if it

will occur in individual cases.

Educate yourself and find the best physician possible to partner with you.

Live the healthiest life you can - eat a sound diet, get enough sleep,

exercise regularly, quit smoking if you do, reduce stress, and be completely

honest with your physician (full disclosure, full compliance).

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] So have your lives been ruined?

> ... well, only tell me if they haven't been!

>

> I've posted here a couple times but am new to all this. I'm 37 and was

> just diagnosed with Lupus within the month or so.

>

> A friend bought me a book called something like " Everything you need

> to know about Lupus " and after reading it I feel like I want to kill

> myself!

>

> Everything sounds so awful and hopeless: Your life will never be the

> same again; Your personality will change and you'll never be the same

> person you were; lots of Lupus patients need anti-depressants to cope

> with the effects of the disease; you have to make tough choices about

> which things to cut out of your life, you need to have a support group

> to talk about how much it sucks, etc, etc.

>

> Plus the chapters of all the physical things that happen to you ...

> the author keeps making the point that you can have Lupus and still

> live, but I think if the rest of my life is going to be like this, I'd

> rather be dead!

>

> Please, if it's true, somebody with Lupus tell me that your life

> hasn't been ruined and you get to function pretty normally and aren't

> miserable all the time!

>

> On another note, what is remission all about? Do the drugs help you go

> into remission? What is the likelihood of that ever happening?

> Anything you can do to help it happen? How long does remission last?

>

> Thanks

> Sad

[Guest guest]

I apologize. I meant to email this to privately.

>From: " Annie Rose " <annierose77@...>

>Reply-

>

>Subject: RE: [ ] So have your lives been ruined?

>Date: Wed, 13 Dec 2006 12:11:25 -0500

>

>,

>

>I'm 38 and an ACTIVE stay at home/work from home Mommy of 2... Just a

>caveat and something I have noticed about this board. Keep in mind that

>the

>people who may respond to your post are those that are isolated, home and

>by

>their computers. Meaning some of them have more severe disease. Keep the

>posts in perspective. Remember there are many people out there living

>their

>lives to the full.

>

>Staying positive and being full of gratitude for all that you DO have will

>serve you well...Now and always..

>

>Hope you find this helpful...

>

>Annie

>

>

> >From: " beanmommy2 " <beanmommy2@...>

> >Reply-

> >

> >Subject: [ ] So have your lives been ruined?

> >Date: Wed, 13 Dec 2006 16:15:11 -0000

> >

> >... well, only tell me if they haven't been!

> >

> >I've posted here a couple times but am new to all this. I'm 37 and was

> >just diagnosed with Lupus within the month or so.

> >

> >A friend bought me a book called something like " Everything you need

> >to know about Lupus " and after reading it I feel like I want to kill

> >myself!

> >

> >Everything sounds so awful and hopeless: Your life will never be the

> >same again; Your personality will change and you'll never be the same

> >person you were; lots of Lupus patients need anti-depressants to cope

> >with the effects of the disease; you have to make tough choices about

> >which things to cut out of your life, you need to have a support group

> >to talk about how much it sucks, etc, etc.

> >

> >Plus the chapters of all the physical things that happen to you ...

> >the author keeps making the point that you can have Lupus and still

> >live, but I think if the rest of my life is going to be like this, I'd

> >rather be dead!

> >

> >Please, if it's true, somebody with Lupus tell me that your life

> >hasn't been ruined and you get to function pretty normally and aren't

> >miserable all the time!

> >

> >On another note, what is remission all about? Do the drugs help you go

> >into remission? What is the likelihood of that ever happening?

> >Anything you can do to help it happen? How long does remission last?

> >

> >Thanks

> >Sad

> >

> >

>

>_________________________________________________________________

>View Athlete’s Collections with Live Search

>http://sportmaps.live.com/index.html?source=hmemailtaglinenov06 & FORM=MGAC01

>

>

>

>

[Guest guest]

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

From: " Annie Rose " <annierose77@...>

>Meaning some of them have more severe disease. Keep the

> posts in perspective. Remember there are many people out there living

> their

> lives to the full.

Excellent point! My fibro got to the point where I had to quit work, and I

am on the computer a lot since I'm home. A friend of mine has had a less

severe case than mine, she still works full time and has never been in an

online fibro group in her life. Same thing for her daughter.

Darcy

[Guest guest]

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

From: " Overell " <patricia.overell@...>

> On Nov. 18, 1995, Itzhak *Perlman*, the violinist, came on stage to give a

> concert at Avery Fisher Hall at Lincoln Center in New York City.

Very nice story! Thanks for sharing it.

Darcy

[Guest guest]

Hi ,

It was painful to read your post, but the depth of your sadness is

understandable. Before I launch into " how great life is " , let me tell you my

story. My first health crisis came after the birth of my son in 1986. I was

incredibly ill and they couldn't find out what was wrong. I had all I could do

to take care of my infant son while my body wasted away and I was unable to

sleep more than 2 hours at a time, all while in the middle of an abusive

marriage. When my son was 8 months old I developed a toxic goiter and was

finally diagnosed with Graves Disease. Next was in 1988 when I was diagnosed

with Rheumatoid Arthritis and Sjogren's Syndrome. I was a single parent of a 3

year old. I struggled for a couple of years and then was in a remission for a

long time. I have gone on like this through the years and am currently in an

active stage, but feeling better all the time.

All that said, I would absolutely not change my life! All of this, pain and

suffering included, has made me a better parent, a better person, a better

daughter, a better friend. Sure I would like to be able to do more on a daily

basis and I miss the " good ol' days " , but my " challenges " have made me

prioritize things. Focus on the truly important things. I work full time in a

medical office that specializes in geriatrics and I am very good at what I do. I

love the patients. I help my parents, I hang out with my 20 yo son

occassionally, I have a friend I see once or twice a month that shops with me at

the thrift store and we have tea and visit. I putter at home.....rest when

needed. If I cannot do something, I just don't. As is evidenced by the

condition of my yard..ha ha ha. My main mission right now is to be able to

continue to work for as long as possible.

, when all is said and done, all of our experiences are our own. No

one knows, no one can predict what your outcome will be. Every time you read a

book or hear someone's story you may see part of yourself in it, but that isn't

you. I know that people join groups for the sense of community and feeling that

we aren't alone in this. We aren't, but we are still individuals. Your

experience will be yours alone. Part of your journey in life.

I wish you well and please don't despair....I see people in various states

health every day. It is possible to be happy, hopeful and " alive " even when we

are

" challenged " with health issues.

Blessings,

--

We are not human beings having a spiritual experience, we are spiritual beings

having a human experience.

---- beanmommy2 <beanmommy2@...> wrote:

=============

..... well, only tell me if they haven't been!

I've posted here a couple times but am new to all this. I'm 37 and was

just diagnosed with Lupus within the month or so.

A friend bought me a book called something like " Everything you need

to know about Lupus " and after reading it I feel like I want to kill

myself!

Everything sounds so awful and hopeless: Your life will never be the

same again; Your personality will change and you'll never be the same

person you were; lots of Lupus patients need anti-depressants to cope

with the effects of the disease; you have to make tough choices about

which things to cut out of your life, you need to have a support group

to talk about how much it sucks, etc, etc.

Plus the chapters of all the physical things that happen to you ...

the author keeps making the point that you can have Lupus and still

live, but I think if the rest of my life is going to be like this, I'd

rather be dead!

Please, if it's true, somebody with Lupus tell me that your life

hasn't been ruined and you get to function pretty normally and aren't

miserable all the time!

On another note, what is remission all about? Do the drugs help you go

into remission? What is the likelihood of that ever happening?

Anything you can do to help it happen? How long does remission last?

Thanks

Sad

[Guest guest]

Hello

I also have a friend who had Lupus about 10 years ago, which was really very

bad at the beginning and on top of that she big problems tolerating all the

drugs, but after may be a year or two, she went into complete remission and it

hasn't appeared ever since. She is leading a healthy and normal life!

I guess this book has tried to gather and describe all symptoms that can be

experienced due to Lupus, but it does not mean that one person will get all of

them. Every human being differs from the other and though some people can have

common symptoms, they will still differ in the way their body handles the

disease.

best of luck

amira

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

Want to start your own business? Learn how on Small Business.

[Guest guest]

--- In , " beanmommy2 " <beanmommy2@...>

wrote:

>

> ... well, only tell me if they haven't been!

>

> I've posted here a couple times but am new to all this. I'm 37 and

was

> just diagnosed with Lupus within the month or so.

>

> A friend bought me a book called something like " Everything you

need

> to know about Lupus " and after reading it I feel like I want to

kill

> myself!

>

> Everything sounds so awful and hopeless: Your life will never be

the

> same again; Your personality will change and you'll never be the

same

> person you were; lots of Lupus patients need anti-depressants to

cope

> with the effects of the disease; you have to make tough choices

about

> which things to cut out of your life, you need to have a support

group

> to talk about how much it sucks, etc, etc.

>

> Plus the chapters of all the physical things that happen to you ...

> the author keeps making the point that you can have Lupus and still

> live, but I think if the rest of my life is going to be like this,

I'd

> rather be dead!

>

> Please, if it's true, somebody with Lupus tell me that your life

> hasn't been ruined and you get to function pretty normally and

aren't

> miserable all the time!

>

> On another note, what is remission all about? Do the drugs help

you go

> into remission? What is the likelihood of that ever happening?

> Anything you can do to help it happen? How long does remission

last?

>

> Thanks

> Sad

>

Dear SJ:

I have a dear long time friend with Lupus. She was pretty messed up

with it and met a millionaire grape farmer, they got married, and

lived HAPPILY EVER AFTER!!! I have had a long distance boyfriend for

a year. I am easily over 100 pounds overweight, and we have a full

disclosure communication policy. I was diagnosed with severe form of

RA 2 months ago. I called and told him. His response was " I'm so

sorry. " Then he changed the subject. A couple of days later after I

had a chance to go online and see the terrible stuff that this

disease can do, I called and told him about what I found out. His

response was, " My mom has something like that for years, we'll work

with it. " I take my medicine faithfully, found a dr. I have

confidence in, and decided to continue to enjoy being the terrific

person I know I am, and let the future take care of itself, with my

support and the love of those I have surrounded myself with. LUCKY

ME!!!!!!!

Love,

[Guest guest]

Patrica that is so beautiful. Thank you for that...

Re: [ ] So have your lives been ruined?

Someone posted this on another forum I'm on, I found it very

inspirational.

No, life may never be the same again, but it's not over. Take time to

grieve for what you've lost, but make the most of the life you have!

On Nov. 18, 1995, Itzhak *Perlman*, the violinist, came on stage to give a

concert at Avery Fisher Hall at Lincoln Center in New York City. If you

have

ever been to a *Perlman* concert, you know that getting on stage is no

small

achievement for him. He was stricken with polio as a child, and so he has

braces on both legs and walks with the aid of two crutches. To see him

walk

across the stage one step at a time, painfully and slowly, is an awesome

sight.

He walks painfully, yet majestically, until he reaches his chair. Then he

sits down, slowly, puts his crutches on the floor, undoes the clasps on

his

legs tucks one foot back and extends the other foot forward. Then he bends

down and picks up the violin, puts it under his chin, nods to the

conductor

and proceeds to play.

By now, the audience is used to this ritual. They sit quietly while he

makes

his way across the stage to his chair. They remain reverently silent while

he undoes the clasps on his legs. They wait until he is ready to play.

But this time, something went wrong. Just as he finished the first few

bars,

one of the strings on his violin broke. You could hear it snap - it went

off

like gunfire across the room. There was no mistaking what that sound

meant.

There was no mistaking what he had to do. We figured that he would have to

get up, put on the clasps again, pick up the crutches and limp his way off

stage - to either find another violin or else find another string for this

one. But he didn't. Instead, he waited a moment, closed his eyes and then

signaled the conductor to begin again.

The orchestra began, and he played from where he had left off. And he

played

with such passion and such power and such purity as they had never heard

before.

Of course, anyone knows that it is impossible to play a symphonic work

with

just three strings. I know that, and you know that, but that night Itzhak

*

Perlman* refused to know that.

You could see him modulating, changing, re-composing the piece in his

head.

At one point, it sounded like he was de-tuning the strings to get new

sounds

from them that they had never made before. When he finished, there was an

awesome silence in the room. And then people rose and cheered. There was

an

extraordinary outburst of applause from every corner of the auditorium. We

were all on our feet, screaming and cheering, doing everything we could to

show how much we appreciated what he had done.

He smiled, wiped the sweat from this brow, raised his bow to quiet us, and

then he said - not boastfully, but in a quiet, pensive, reverent tone -

" You

know, sometimes it is the artist's task to find out how much music you can

still make with what you have left. "

What a powerful line that is. It has stayed in my mind ever since I heard

it.

And who knows? Perhaps that is the definition of life - not just for

artists

but for all of us. Here is a man who has prepared all his life to make

music

on a violin of four strings, who, all of a sudden, in the middle of a

concert, finds himself with only three strings; so he makes music with

three

strings, and the music he made that night with just three strings was more

beautiful, more sacred, more memorable, than any that he had ever made

before, when he had four strings.

So, perhaps our task in this shaky, fast-changing, bewildering world in

which we live is to make music, at first with all that we have, and then,

when that is no longer possible, to make music with what we have left.

On 12/13/06, beanmommy2 <beanmommy2@...> wrote:

>

> ... well, only tell me if they haven't been!

>

> I've posted here a couple times but am new to all this. I'm 37 and was

> just diagnosed with Lupus within the month or so.

>

> A friend bought me a book called something like " Everything you need

> to know about Lupus " and after reading it I feel like I want to kill

> myself!

>

> Everything sounds so awful and hopeless: Your life will never be the

> same again; Your personality will change and you'll never be the same

> person you were; lots of Lupus patients need anti-depressants to cope

> with the effects of the disease; you have to make tough choices about

> which things to cut out of your life, you need to have a support group

> to talk about how much it sucks, etc, etc.

>

> Plus the chapters of all the physical things that happen to you ...

> the author keeps making the point that you can have Lupus and still

> live, but I think if the rest of my life is going to be like this, I'd

> rather be dead!

>

> Please, if it's true, somebody with Lupus tell me that your life

> hasn't been ruined and you get to function pretty normally and aren't

> miserable all the time!

>

> On another note, what is remission all about? Do the drugs help you go

> into remission? What is the likelihood of that ever happening?

> Anything you can do to help it happen? How long does remission last?

>

> Thanks

> Sad

>

>

>

>

--

Shoreview, MN, until April! brrrr!

South Pasadena, CA

You can see my galleries at http://www.pbase.com/arenared986

[Guest guest]

HI All....

Most know I don't post much on here...I lurk!!! I was touched by the post and

understand completely. But I like to take a different approach to what has

happened to me. First of all... in June of last year, 2005, my wifes' mother

passed away extremely suddenly....we took her to the hospital..where she walked

into the emergency room, and was dead less than 24 hours later from a staph

infection that was so aggressive that the hospital staff could not stop it from

killing her. Then, almost 3 months later, we lost everything we owned, including

a house and a townhouse, to Katrina. We had to relocate to Houston Texas...where

my wife's home offices are located...with virtually only the clothes on our

back. Then...in March, I broke my left foot while substitute teaching, and was

in a cast for nearly 6 months...during which time I developed a DVT that nearly

killed me. Then...after spending time in the hospital....I was able to recover

and the day I was to get my cast removed

from my leg, I ruptured the triceps tendon in my left elbow...which required me

to have surgery, and miss nearly 2 more months of work. So nearly 9 months of

the 16 months we have lived here in Houston I have been unable to work more than

a day or two at a time! On top of that...while taking blood thinning agents, I

can't take any meds for my RA or Osteoarthritis.

So...now that I am able to work again sub teaching..I got lucky...yes lucky

enough to get an assignment to work in a class of only 5 students...with 4

teachers in the class. Only one of these students can manage to speak...and she

has a muscular disease similar to ALS...except this one doesn't kill you as fast

as ALS. She is only 10 years old and adorable. The other 4 students have rare

muscular diseases, as one is in a wheel chair, and the other 3 can walk, but

they are in their own world. What a joy it has been these past few weeks to

work with the children that have no chance at all for a future...yet...when I

look into their eyes...all I see is the love for life they have. One boy...name

...has to be the happiest person I have ever met..yet he cannot tell me he

is happy...but yet I hear it in his laugh when he sees someone running, or when

I play " Peek-a-boo " with him! He spins in a circle when he hears music, and

tries to snap his fingers, all the while, he

has a huge grin on his face. The little boy I was assigned to care for is

named Charlie...and Charlie has a very rare genetic disorder, and he basically

lives in his own world...he doesn't talk...he doesn't even play with toys or

anything....he basically sits or walks around and if given the chance will

destroy anything he gets his hands on. He bit me on more than one occasion,

because he doesn't like to be touched, yet I did not give up on him. During the

time I was there, I got to see him use a fork for the first time to feed

himself, and he started drinking out of a " sipper cup! " All marvelous

acheivements for him!

My wife asked me how I got satisfaction out of sitting there taking care of

him....and I told her, " Just to see little Charlie use a fork for the first

time...and to see his eyes light up when we all clapped and told him how good a

boy he was...well...there has been nothing like it! "

So has my life been ruined by RA, OA, & all my medical problems??? No...not in

the least bit. It's all how you look at things. I have learned more about life

from these 5 children than I have learned in my 49 years previously. I have

figured something out from them...every moment of every day is to be cherished,

and to take joy from the simple things. Learn to appreciate those around you

and your loved ones...because you can.

Just me though...and only my experiences.

Larry Holmack

KarLa Bichon Frise

Houston Texas Bichondaddy1057@...

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

Need a quick answer? Get one in minutes from people who know. Ask your question

on Answers.

[Guest guest]

Larry,

What an inspiration you are! Those children are lucky to have you, just

as we are lucky to have you in this group. What a wonderful message to

share with us at this Christmas time! Thank you for this. I admire your

attitude.

Sue

On Thursday, December 14, 2006, at 10:11 PM, Larry Holmack wrote:

>

> So has my life been ruined by RA, OA, & all my medical problems???

> No...not in the least bit. It's all how you look at things. I have

> learned more about life from these 5 children than I have learned in

> my 49 years previously. I have figured something out from them...every

> moment of every day is to be cherished, and to take joy from the

> simple things. Learn to appreciate those around you and your loved

> ones...because you can.

[Guest guest]

Larry thank you for such a gift. You are a true angel! I could hear the joy

you get from these children and them from you.

Thank you

Marsha

Larry Holmack <bichondaddy1057@...> wrote:

So has my life been ruined by RA, OA, & all my medical problems??? No...not in

the least bit. It's all how you look at things. I have learned more about life

from these 5 children than I have learned in my 49 years previously. I have

figured something out from them...every moment of every day is to be cherished,

and to take joy from the simple things. Learn to appreciate those around you and

your loved ones...because you can.

Just me though...and only my experiences.

Larry Holmack

KarLa Bichon Frise

Houston Texas Bichondaddy1057@...

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

Need a quick answer? Get one in minutes from people who know. Ask your question

on Answers.

[Guest guest]

Larry, you are indeed an angel who brings joy to the lives of these

children. My son works with autistic children, and I know it takes a very

special person to work with special needs children. I also know, from

experience, that you always get back more than you give! God bless you, and

keep you healthy enough to continue your work. You and your children will

be in my thoughts and prayers.

On 12/14/06, Larry Holmack <bichondaddy1057@...> wrote:

>

> HI All....

>

> Most know I don't post much on here...I lurk!!! I was touched by the

> post and understand completely. But I like to take a different approach to

> what has happened to me. First of all... in June of last year, 2005, my

> wifes' mother passed away extremely suddenly....we took her to the

> hospital..where she walked into the emergency room, and was dead less than

> 24 hours later from a staph infection that was so aggressive that the

> hospital staff could not stop it from killing her. Then, almost 3 months

> later, we lost everything we owned, including a house and a townhouse, to

> Katrina. We had to relocate to Houston Texas...where my wife's home offices

> are located...with virtually only the clothes on our back. Then...in March,

> I broke my left foot while substitute teaching, and was in a cast for nearly

> 6 months...during which time I developed a DVT that nearly killed me.

> Then...after spending time in the hospital....I was able to recover and the

> day I was to get my cast removed

> from my leg, I ruptured the triceps tendon in my left elbow...which

> required me to have surgery, and miss nearly 2 more months of work. So

> nearly 9 months of the 16 months we have lived here in Houston I have been

> unable to work more than a day or two at a time! On top of that...while

> taking blood thinning agents, I can't take any meds for my RA or

> Osteoarthritis.

>

> So...now that I am able to work again sub teaching..I got lucky...yes

> lucky enough to get an assignment to work in a class of only 5

> students...with 4 teachers in the class. Only one of these students can

> manage to speak...and she has a muscular disease similar to ALS...except

> this one doesn't kill you as fast as ALS. She is only 10 years old and

> adorable. The other 4 students have rare muscular diseases, as one is in a

> wheel chair, and the other 3 can walk, but they are in their own

> world. What a joy it has been these past few weeks to work with the

> children that have no chance at all for a future...yet...when I look into

> their eyes...all I see is the love for life they have. One boy...name

> ...has to be the happiest person I have ever met..yet he cannot tell

> me he is happy...but yet I hear it in his laugh when he sees someone

> running, or when I play " Peek-a-boo " with him! He spins in a circle when he

> hears music, and tries to snap his fingers, all the while, he

> has a huge grin on his face. The little boy I was assigned to care for is

> named Charlie...and Charlie has a very rare genetic disorder, and he

> basically lives in his own world...he doesn't talk...he doesn't even play

> with toys or anything....he basically sits or walks around and if given the

> chance will destroy anything he gets his hands on. He bit me on more than

> one occasion, because he doesn't like to be touched, yet I did not give up

> on him. During the time I was there, I got to see him use a fork for the

> first time to feed himself, and he started drinking out of a " sipper cup! "

> All marvelous acheivements for him!

>

> My wife asked me how I got satisfaction out of sitting there taking care

> of him....and I told her, " Just to see little Charlie use a fork for the

> first time...and to see his eyes light up when we all clapped and told him

> how good a boy he was...well...there has been nothing like it! "

>

> So has my life been ruined by RA, OA, & all my medical problems???

> No...not in the least bit. It's all how you look at things. I have learned

> more about life from these 5 children than I have learned in my 49 years

> previously. I have figured something out from them...every moment of every

> day is to be cherished, and to take joy from the simple things. Learn to

> appreciate those around you and your loved ones...because you can.

>

> Just me though...and only my experiences.

>

>

> Larry Holmack

> KarLa Bichon Frise

> Houston Texas Bichondaddy1057@...

>

>

--

Shoreview, MN, until April! brrrr!

South Pasadena, CA

You can see my galleries at http://www.pbase.com/arenared986