I have Lupus(SLE)

[Guest guest]

I have had Lupus for 2 years now....sometimes I can't believe it has

only been that long, probably cause it seems the days drag out

longer now, sometimes it feels I have had Lupus for ages, and then I

realize now it has only been 2 years, so you better get used to it

more and accept it better... Though sometimes I also can't believe

it has been already 2 years, sometimes it feels like just

yesterday,I guess cause when I first got sick doctors made it sound

like I would get better and things would go back to the way they

were, I really feel that is how they acted, like we will get you on

track, so at first I expected things to be more short term, and now

2 years later, well as we all know here, Lupus is still with me, so

when I say 2 years, sometimes it is like no, has it really been 2

years already, and I am still not on track yet...

For me Lupus has been a humogo roller coaster. I actually regret not

writing about it from day 1....if I knew it would be what it is, I

would have...and now looking back, it is hard to grasp the full

feeling of everything that has happened in the past 2 years....I

just can't believe it all, it blows my mind....

For quite awhile I fall into depression. Not when I first got sick,

actually the depression didn't kick in til about at Month 12 of

Lupus and continously got worse and worse....but finally it is at a

much better place now, though I still do not feel like me, or what

was me....the steriods really affect my moods, and my body....I hate

steriods yet they do a job that needs to be done....

Anyways I would love to talk with others with Lupus. I always find

it very comforting. I get along well with people with Lupus more

than people without. I guess we just all get each other and are

sympathetic and apathetic to each other in ways I don't feel so much

with others who don't have a chronic illness as Lupus. I know I

probably should try to have relationships beyond the circle, but it

can be hard, as most of you probably agree....

Lastly, I want to let everyone know about something I have gotten

involved with regarding Lupus. This really has helped me, because

has provided me with hope that Life Without Lupus can one day exist.

It has given me a purpose and a healthy outlet to direct my

frustration with being sick and tired. It truly has empowered me to

step back from asking why me?, and instead do something about Lupus.

See, When I got Lupus, I lost so much besides my health, I lost my

youth, I lost my career, I lost my finacial health, my identity

really, my life had to start over completely and I have all these

new limitations, and mostly I felt I lacked purpose and meaning. I

still struggle up and down with all this on and off. I go to support

group meetings, and tried volunteering a little with LFA, but it was

when I found ALR that I really felt this contagious feeling of

excitement again finally. It has given me purpose and along with it

a sense of accomplishment, something that seemed to have disappeared

before I found them. I have gotten very involved with them now,

almost every day try to do something for it, am on a planning

commitee and am a team leader, the Austin, TX walk is my baby,lol.

It's all volunteer, and all mostly entirely from my own home, which

is what makes helping them so realistic and convenient for me. I do

it mainly because even though I can longer work due to the severity

of my Lupus, I got to do something, for me being sick is actually

one of the most boring experiences at times! Plus, I really hate how

much I can't control being sick, can't control my Lupus, but this

makes me feel like I do have some control cause I feel I am helping

to change the picture of Lupus, even if it won't be for me, in my

lifetime, atleast it will be for someone someday, and maybe it will

be in my lifetime. ALR is the world's largest non governmental

funder of Lupus research, more than any other Lupus organization in

the world. They are folks that are fighting for us to get the

cutting edge stuff...Maybe some others will find Alliance for Lupus

Research(ALR)something they will want to explore getting involved

with to some capacity also, or might want to get some helpful Lupus

info from....www.lupusresearch.org...I also wanted to let everyone

know the current listing of the ALR Walk With Us To Cure Lupus Walk

Events across the US. People obviously physically walk, but they

also have virtual walk options, and family activities at the walk

and tents for shade, etc. And volunteer needs and any fundraising,

100% goes right to Lupus research. At the walks, you get a great

chance to meet so many others living with Lupus in your area. A lot

of people sometimes say but I am too sick to do something like that,

but they are so accomodating and accepting of what you can handle,

and I always encourage people to consider what they may be able to

do, like use wheelchair, or cheer others on, or what their family

might do for them, walk for them, etc.

Walk With Us To Cure Lupus 2006

Atlanta, GA

September 30th

Austin, TX

October 14th

Boca Raton, FL

Winter 2007

Chattanooga, TN

September 30th

Chicago, IL

October 21st

Dallas, TX

November 18th

Denver, CO

Fall

Detroit, MI

Fall

Houston, TX

November 11th

Kansas City, MO

May 13th

Long Island, NY

May 20th

Miami, FL

Fall

New England

June 10th

New Jersey - Central

June 4th

New Jersey - Northern

June 17th

New York City, NY

October 28th

Northern Michigan

June 10th

Philadelphia, PA

Fall

Raleigh-Durham, NC

October 7th

San Francisco, CA

November 4th

Sarasota, FL

April 23rd

Seattle, WA

Fall

Tampa, FL

May 13th

Washington, DC

October 28th

Baltimore, land

2007

Las Vegas, Nevada

2007

Los Angeles, California

2007

San Diego, California

2008

If anyone wants to get into a walk in some manner, there are many

different opps, and ways to, even from home if need be...then call 1

866 WALK ALR or email walks@...

Anyways, I really would like to talk more with folks about Lupus and

such. Currently, I just started Imuran, plus I do Plaquenil, and

Prednisone. I have done Cellcept and Methotrexate in the past...I

deal with a lot of chronic pain and fatigue, pain and fatigue are

not even the words...it takes a lot of work to live with Lupus...

[Guest guest]

Gailvina,

I think it is excellent that you are able to take something negative

such as getting a disease like Lupus and turn it into a positive in a

way that you have, such as networking with other Lupus patients and

dedicating your life towards a cure. i, too, spent the good times I had

earlier in my illness volunteering and also networking online and

in-state with the annual sarcoidosis convention. I was fortunate, as

you are, that steroid treatments, along with various chemotherapies

allowed me to do those kind of things for about six of the past ten

years.

Be careful, though, about the steroids. Unless you have school aged

children as I did, you might not like to pay the price of using

steroids long term. What dose do you take? I know you mentioned mood

swings. There are mild anti psychotics (don't be put off by the name)

which can really help. Are steroids the only treatment for Lupus? Is

fatigue a major factor? How can you manage a long walk? I was on

ritalin to help keep me up and about, but it started elevating my blood

pressure. I would like to hear about another drug that can help the

fatigue if you know of any.

You sound very dedicated. Good for you! Take care.

.

--- gailvina <GSparrow69@...> wrote:

> I have had Lupus for 2 years now....sometimes I can't believe it has

> only been that long, probably cause it seems the days drag out

> longer now, sometimes it feels I have had Lupus for ages, and then I

> realize now it has only been 2 years, so you better get used to it

> more and accept it better... Though sometimes I also can't believe

> it has been already 2 years, sometimes it feels like just

> yesterday,I guess cause when I first got sick doctors made it sound

> like I would get better and things would go back to the way they

> were, I really feel that is how they acted, like we will get you on

> track, so at first I expected things to be more short term, and now

> 2 years later, well as we all know here, Lupus is still with me, so

> when I say 2 years, sometimes it is like no, has it really been 2

> years already, and I am still not on track yet...

>

> For me Lupus has been a humogo roller coaster. I actually regret not

> writing about it from day 1....if I knew it would be what it is, I

> would have...and now looking back, it is hard to grasp the full

> feeling of everything that has happened in the past 2 years....I

> just can't believe it all, it blows my mind....

>

> For quite awhile I fall into depression. Not when I first got sick,

> actually the depression didn't kick in til about at Month 12 of

> Lupus and continously got worse and worse....but finally it is at a

> much better place now, though I still do not feel like me, or what

> was me....the steriods really affect my moods, and my body....I hate

> steriods yet they do a job that needs to be done....

>

> Anyways I would love to talk with others with Lupus. I always find

> it very comforting. I get along well with people with Lupus more

> than people without. I guess we just all get each other and are

> sympathetic and apathetic to each other in ways I don't feel so much

> with others who don't have a chronic illness as Lupus. I know I

> probably should try to have relationships beyond the circle, but it

> can be hard, as most of you probably agree....

>

> Lastly, I want to let everyone know about something I have gotten

> involved with regarding Lupus. This really has helped me, because

> has provided me with hope that Life Without Lupus can one day exist.

> It has given me a purpose and a healthy outlet to direct my

> frustration with being sick and tired. It truly has empowered me to

> step back from asking why me?, and instead do something about Lupus.

> See, When I got Lupus, I lost so much besides my health, I lost my

> youth, I lost my career, I lost my finacial health, my identity

> really, my life had to start over completely and I have all these

> new limitations, and mostly I felt I lacked purpose and meaning. I

> still struggle up and down with all this on and off. I go to support

> group meetings, and tried volunteering a little with LFA, but it was

> when I found ALR that I really felt this contagious feeling of

> excitement again finally. It has given me purpose and along with it

> a sense of accomplishment, something that seemed to have disappeared

> before I found them. I have gotten very involved with them now,

> almost every day try to do something for it, am on a planning

> commitee and am a team leader, the Austin, TX walk is my baby,lol.

> It's all volunteer, and all mostly entirely from my own home, which

> is what makes helping them so realistic and convenient for me. I do

> it mainly because even though I can longer work due to the severity

> of my Lupus, I got to do something, for me being sick is actually

> one of the most boring experiences at times! Plus, I really hate how

> much I can't control being sick, can't control my Lupus, but this

> makes me feel like I do have some control cause I feel I am helping

> to change the picture of Lupus, even if it won't be for me, in my

> lifetime, atleast it will be for someone someday, and maybe it will

> be in my lifetime. ALR is the world's largest non governmental

> funder of Lupus research, more than any other Lupus organization in

> the world. They are folks that are fighting for us to get the

> cutting edge stuff...Maybe some others will find Alliance for Lupus

> Research(ALR)something they will want to explore getting involved

> with to some capacity also, or might want to get some helpful Lupus

> info from....www.lupusresearch.org...I also wanted to let everyone

> know the current listing of the ALR Walk With Us To Cure Lupus Walk

> Events across the US. People obviously physically walk, but they

> also have virtual walk options, and family activities at the walk

> and tents for shade, etc. And volunteer needs and any fundraising,

> 100% goes right to Lupus research. At the walks, you get a great

> chance to meet so many others living with Lupus in your area. A lot

> of people sometimes say but I am too sick to do something like that,

> but they are so accomodating and accepting of what you can handle,

> and I always encourage people to consider what they may be able to

> do, like use wheelchair, or cheer others on, or what their family

> might do for them, walk for them, etc.

>

> Walk With Us To Cure Lupus 2006

> Atlanta, GA

> September 30th

>

> Austin, TX

> October 14th

>

> Boca Raton, FL

> Winter 2007

>

> Chattanooga, TN

> September 30th

>

> Chicago, IL

> October 21st

>

> Dallas, TX

> November 18th

>

> Denver, CO

> Fall

>

> Detroit, MI

> Fall

>

> Houston, TX

> November 11th

>

> Kansas City, MO

> May 13th

>

> Long Island, NY

> May 20th

>

> Miami, FL

> Fall

>

> New England

> June 10th

>

> New Jersey - Central

> June 4th

>

> New Jersey - Northern

> June 17th

>

> New York City, NY

> October 28th

>

> Northern Michigan

> June 10th

>

> Philadelphia, PA

> Fall

>

> Raleigh-Durham, NC

> October 7th

>

> San Francisco, CA

> November 4th

>

> Sarasota, FL

> April 23rd

>

> Seattle, WA

> Fall

>

> Tampa, FL

> May 13th

>

> Washington, DC

> October 28th

>

> Baltimore, land

> 2007

>

> Las Vegas, Nevada

> 2007

>

> Los Angeles, California

> 2007

>

> San Diego, California

> 2008

>

> If anyone wants to get into a walk in some manner, there are many

> different opps, and ways to, even from home if need be...then call 1

> 866 WALK ALR or email walks@...

>

> Anyways, I really would like to talk more with folks about Lupus and

> such. Currently, I just started Imuran, plus I do Plaquenil, and

> Prednisone. I have done Cellcept and Methotrexate in the past...I

> deal with a lot of chronic pain and fatigue, pain and fatigue are

> not even the words...it takes a lot of work to live with Lupus...

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

i would also like a med to help e with the fatigue and

the pain i am on patches and predison but i still have

alot of pain and fatigue

--- RKelty <rkelty99@...> wrote:

> Gailvina,

>

> I think it is excellent that you are able to take

> something negative

> such as getting a disease like Lupus and turn it

> into a positive in a

> way that you have, such as networking with other

> Lupus patients and

> dedicating your life towards a cure. i, too, spent

> the good times I had

> earlier in my illness volunteering and also

> networking online and

> in-state with the annual sarcoidosis convention. I

> was fortunate, as

> you are, that steroid treatments, along with various

> chemotherapies

> allowed me to do those kind of things for about six

> of the past ten

> years.

>

> Be careful, though, about the steroids. Unless you

> have school aged

> children as I did, you might not like to pay the

> price of using

> steroids long term. What dose do you take? I know

> you mentioned mood

> swings. There are mild anti psychotics (don't be put

> off by the name)

> which can really help. Are steroids the only

> treatment for Lupus? Is

> fatigue a major factor? How can you manage a long

> walk? I was on

> ritalin to help keep me up and about, but it started

> elevating my blood

> pressure. I would like to hear about another drug

> that can help the

> fatigue if you know of any.

>

> You sound very dedicated. Good for you! Take care.

>

> .

>

> --- gailvina <GSparrow69@...> wrote:

>

> > I have had Lupus for 2 years now....sometimes I

> can't believe it has

> > only been that long, probably cause it seems the

> days drag out

> > longer now, sometimes it feels I have had Lupus

> for ages, and then I

> > realize now it has only been 2 years, so you

> better get used to it

> > more and accept it better... Though sometimes I

> also can't believe

> > it has been already 2 years, sometimes it feels

> like just

> > yesterday,I guess cause when I first got sick

> doctors made it sound

> > like I would get better and things would go back

> to the way they

> > were, I really feel that is how they acted, like

> we will get you on

> > track, so at first I expected things to be more

> short term, and now

> > 2 years later, well as we all know here, Lupus is

> still with me, so

> > when I say 2 years, sometimes it is like no, has

> it really been 2

> > years already, and I am still not on track yet...

> >

> > For me Lupus has been a humogo roller coaster. I

> actually regret not

> > writing about it from day 1....if I knew it would

> be what it is, I

> > would have...and now looking back, it is hard to

> grasp the full

> > feeling of everything that has happened in the

> past 2 years....I

> > just can't believe it all, it blows my mind....

> >

> > For quite awhile I fall into depression. Not when

> I first got sick,

> > actually the depression didn't kick in til about

> at Month 12 of

> > Lupus and continously got worse and worse....but

> finally it is at a

> > much better place now, though I still do not feel

> like me, or what

> > was me....the steriods really affect my moods, and

> my body....I hate

> > steriods yet they do a job that needs to be

> done....

> >

> > Anyways I would love to talk with others with

> Lupus. I always find

> > it very comforting. I get along well with people

> with Lupus more

> > than people without. I guess we just all get each

> other and are

> > sympathetic and apathetic to each other in ways I

> don't feel so much

> > with others who don't have a chronic illness as

> Lupus. I know I

> > probably should try to have relationships beyond

> the circle, but it

> > can be hard, as most of you probably agree....

> >

> > Lastly, I want to let everyone know about

> something I have gotten

> > involved with regarding Lupus. This really has

> helped me, because

> > has provided me with hope that Life Without Lupus

> can one day exist.

> > It has given me a purpose and a healthy outlet to

> direct my

> > frustration with being sick and tired. It truly

> has empowered me to

> > step back from asking why me?, and instead do

> something about Lupus.

> > See, When I got Lupus, I lost so much besides my

> health, I lost my

> > youth, I lost my career, I lost my finacial

> health, my identity

> > really, my life had to start over completely and I

> have all these

> > new limitations, and mostly I felt I lacked

> purpose and meaning. I

> > still struggle up and down with all this on and

> off. I go to support

> > group meetings, and tried volunteering a little

> with LFA, but it was

> > when I found ALR that I really felt this

> contagious feeling of

> > excitement again finally. It has given me purpose

> and along with it

> > a sense of accomplishment, something that seemed

> to have disappeared

> > before I found them. I have gotten very involved

> with them now,

> > almost every day try to do something for it, am on

> a planning

> > commitee and am a team leader, the Austin, TX walk

> is my baby,lol.

> > It's all volunteer, and all mostly entirely from

> my own home, which

> > is what makes helping them so realistic and

> convenient for me. I do

> > it mainly because even though I can longer work

> due to the severity

> > of my Lupus, I got to do something, for me being

> sick is actually

> > one of the most boring experiences at times! Plus,

> I really hate how

> > much I can't control being sick, can't control my

> Lupus, but this

> > makes me feel like I do have some control cause I

> feel I am helping

> > to change the picture of Lupus, even if it won't

> be for me, in my

> > lifetime, atleast it will be for someone someday,

> and maybe it will

> > be in my lifetime. ALR is the world's largest non

> governmental

> > funder of Lupus research, more than any other

> Lupus organization in

> > the world. They are folks that are fighting for us

> to get the

> > cutting edge stuff...Maybe some others will find

> Alliance for Lupus

> > Research(ALR)something they will want to explore

> getting involved

> > with to some capacity also, or might want to get

> some helpful Lupus

> > info from....www.lupusresearch.org...I also wanted

> to let everyone

> > know the current listing of the ALR Walk With Us

> To Cure Lupus Walk

> > Events across the US. People obviously physically

> walk, but they

> > also have virtual walk options, and family

> activities at the walk

> > and tents for shade, etc. And volunteer needs and

> any fundraising,

> > 100% goes right to Lupus research. At the walks,

> you get a great

> > chance to meet so many others living with Lupus in

> your area. A lot

> > of people sometimes say but I am too sick to do

> something like that,

> > but they are so accomodating and accepting of what

> you can handle,

> > and I always encourage people to consider what

> they may be able to

> > do, like use wheelchair, or cheer others on, or

> what their family

> > might do for them, walk for them, etc.

> >

> > Walk With Us To Cure Lupus 2006

> > Atlanta, GA

> > September 30th

> >

> > Austin, TX

> > October 14th

> >

> > Boca Raton, FL

> > Winter 2007

> >

> > Chattanooga, TN

> > September 30th

> >

> > Chicago, IL

> > October 21st

> >

> > Dallas, TX

> > November 18th

> >

> > Denver, CO

> > Fall

> >

> > Detroit, MI

> > Fall

> >

> > Houston, TX

> > November 11th

> >

> > Kansas City, MO

> > May 13th

> >

> > Long Island, NY

> > May 20th

> >

> > Miami, FL

> > Fall

> >

> > New England

> > June 10th

> >

> > New Jersey - Central

> > June 4th

> >

> > New Jersey - Northern

> > June 17th

> >

> > New York City, NY

> > October 28th

> >

> > Northern Michigan

> > June 10th

> >

> > Philadelphia, PA

> > Fall

> >

> > Raleigh-Durham, NC

> > October 7th

> >

> > San Francisco, CA

> > November 4th

> >

> > Sarasota, FL

> > April 23rd

> >

> > Seattle, WA

> > Fall

> >

> > Tampa, FL

> > May 13th

> >

> > Washington, DC

> > October 28th

> >

> > Baltimore, land

> > 2007

> >

> > Las Vegas, Nevada

> > 2007

> >

> > Los Angeles, California

> > 2007

> >

> > San Diego, California

> > 2008

> >

> > If anyone wants to get into a walk in some manner,

> there are many

> > different opps, and ways to, even from home if

> need be...then call 1

> > 866 WALK ALR or email walks@...

> >

> > Anyways, I really would like to talk more with

> folks about Lupus and

> > such. Currently, I just started Imuran, plus I do

> Plaquenil, and

> > Prednisone. I have done Cellcept and Methotrexate

> in the past...I

> > deal with a lot of chronic pain and fatigue, pain

> and fatigue are

> > not even the words...it takes a lot of work to

> live with Lupus...

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Dear Jeana and all,

I have neurosarcodosis, multisystemic sarcodosis, and several other

secondary conditions that cause me various kinds of pain the worst

being the awful burning of neuralgia. I also have very bad arthritis

from years of too much steroids which I can never have again unless I

have a liver transplant. Anyway, to make a long story shorter, it

took many years, but my pain doctor has finally made me comfortable,

and i really feel like sharing my " formula: "

1600mg Neurontin 4xday

75mg Topomax 3xday

100mcg patches Phentanyl alternater arms change every other day

5mg Zyprexa 2xday

75mg Effexor 2xday

Now, I'm not sure the Effexor is part of the pain regimen, but it was

prescribed by my pain doc. I'm on other meds including immuno

suppressants but I don't think they effect pain control. I hope the

above list might help someone with some suggestions for their docs,

Take good care.

--- jeana <jeana_1973@...> wrote:

> i would also like a med to help e with the fatigue and

> the pain i am on patches and predison but i still have

> alot of pain and fatigue

>

> --- RKelty <rkelty99@...> wrote:

>

> > Gailvina,

> >

> > I think it is excellent that you are able to take

> > something negative

> > such as getting a disease like Lupus and turn it

> > into a positive in a

> > way that you have, such as networking with other

> > Lupus patients and

> > dedicating your life towards a cure. i, too, spent

> > the good times I had

> > earlier in my illness volunteering and also

> > networking online and

> > in-state with the annual sarcoidosis convention. I

> > was fortunate, as

> > you are, that steroid treatments, along with various

> > chemotherapies

> > allowed me to do those kind of things for about six

> > of the past ten

> > years.

> >

> > Be careful, though, about the steroids. Unless you

> > have school aged

> > children as I did, you might not like to pay the

> > price of using

> > steroids long term. What dose do you take? I know

> > you mentioned mood

> > swings. There are mild anti psychotics (don't be put

> > off by the name)

> > which can really help. Are steroids the only

> > treatment for Lupus? Is

> > fatigue a major factor? How can you manage a long

> > walk? I was on

> > ritalin to help keep me up and about, but it started

> > elevating my blood

> > pressure. I would like to hear about another drug

> > that can help the

> > fatigue if you know of any.

> >

> > You sound very dedicated. Good for you! Take care.

> >

> > .

> >

> > --- gailvina <GSparrow69@...> wrote:

> >

> > > I have had Lupus for 2 years now....sometimes I

> > can't believe it has

> > > only been that long, probably cause it seems the

> > days drag out

> > > longer now, sometimes it feels I have had Lupus

> > for ages, and then I

> > > realize now it has only been 2 years, so you

> > better get used to it

> > > more and accept it better... Though sometimes I

> > also can't believe

> > > it has been already 2 years, sometimes it feels

> > like just

> > > yesterday,I guess cause when I first got sick

> > doctors made it sound

> > > like I would get better and things would go back

> > to the way they

> > > were, I really feel that is how they acted, like

> > we will get you on

> > > track, so at first I expected things to be more

> > short term, and now

> > > 2 years later, well as we all know here, Lupus is

> > still with me, so

> > > when I say 2 years, sometimes it is like no, has

> > it really been 2

> > > years already, and I am still not on track yet...

> > >

> > > For me Lupus has been a humogo roller coaster. I

> > actually regret not

> > > writing about it from day 1....if I knew it would

> > be what it is, I

> > > would have...and now looking back, it is hard to

> > grasp the full

> > > feeling of everything that has happened in the

> > past 2 years....I

> > > just can't believe it all, it blows my mind....

> > >

> > > For quite awhile I fall into depression. Not when

> > I first got sick,

> > > actually the depression didn't kick in til about

> > at Month 12 of

> > > Lupus and continously got worse and worse....but

> > finally it is at a

> > > much better place now, though I still do not feel

> > like me, or what

> > > was me....the steriods really affect my moods, and

> > my body....I hate

> > > steriods yet they do a job that needs to be

> > done....

> > >

> > > Anyways I would love to talk with others with

> > Lupus. I always find

> > > it very comforting. I get along well with people

> > with Lupus more

> > > than people without. I guess we just all get each

> > other and are

> > > sympathetic and apathetic to each other in ways I

> > don't feel so much

> > > with others who don't have a chronic illness as

> > Lupus. I know I

> > > probably should try to have relationships beyond

> > the circle, but it

> > > can be hard, as most of you probably agree....

> > >

> > > Lastly, I want to let everyone know about

> > something I have gotten

> > > involved with regarding Lupus. This really has

> > helped me, because

> > > has provided me with hope that Life Without Lupus

> > can one day exist.

> > > It has given me a purpose and a healthy outlet to

> > direct my

> > > frustration with being sick and tired. It truly

> > has empowered me to

> > > step back from asking why me?, and instead do

> > something about Lupus.

> > > See, When I got Lupus, I lost so much besides my

> > health, I lost my

> > > youth, I lost my career, I lost my finacial

> > health, my identity

> > > really, my life had to start over completely and I

> > have all these

> > > new limitations, and mostly I felt I lacked

> > purpose and meaning. I

> > > still struggle up and down with all this on and

> > off. I go to support

> > > group meetings, and tried volunteering a little

> > with LFA, but it was

> > > when I found ALR that I really felt this

> > contagious feeling of

> > > excitement again finally. It has given me purpose

> > and along with it

> > > a sense of accomplishment, something that seemed

> > to have disappeared

> > > before I found them. I have gotten very involved

> > with them now,

> > > almost every day try to do something for it, am on

> > a planning

> > > commitee and am a team leader, the Austin, TX walk

> > is my baby,lol.

> > > It's all volunteer, and all mostly entirely from

> > my own home, which

> > > is what makes helping them so realistic and

> > convenient for me. I do

> > > it mainly because even though I can longer work

> > due to the severity

> > > of my Lupus, I got to do something, for me being

> > sick is actually

> > > one of the most boring experiences at times! Plus,

> > I really hate how

> > > much I can't control being sick, can't control my

> > Lupus, but this

> > > makes me feel like I do have some control cause I

> > feel I am helping

> > > to change the picture of Lupus, even if it won't

> > be for me, in my

> > > lifetime, atleast it will be for someone someday,

> > and maybe it will

> > > be in my lifetime. ALR is the world's largest non

> > governmental

> > > funder of Lupus research, more than any other

> > Lupus organization in

> > > the world. They are folks that are fighting for us

> > to get the

> > > cutting edge stuff...Maybe some others will find

> > Alliance for Lupus

> > > Research(ALR)something they will want to explore

> > getting involved

> > > with to some capacity also, or might want to get

> > some helpful Lupus

> > > info from....www.lupusresearch.org...I also wanted

> > to let everyone

> > > know the current listing of the ALR Walk With Us

> > To Cure Lupus Walk

> > > Events across the US. People obviously physically

> > walk, but they

> > > also have virtual walk options, and family

> > activities at the walk

> > > and tents for shade, etc. And volunteer needs and

> > any fundraising,

> > > 100% goes right to Lupus research. At the walks,

> > you get a great

> > > chance to meet so many others living with Lupus in

> > your area. A lot

> > > of people sometimes say but I am too sick to do

> > something like that,

> > > but they are so accomodating and accepting of what

> > you can handle,

> > > and I always encourage people to consider what

> > they may be able to

> > > do, like use wheelchair, or cheer others on, or

> > what their family

> > > might do for them, walk for them, etc.

> > >

> > > Walk With Us To Cure Lupus 2006

> > > Atlanta, GA

> > > September 30th

> > >

> > > Austin, TX

> > > October 14th

> > >

> > > Boca Raton, FL

> > > Winter 2007

> > >

> > > Chattanooga, TN

> > > September 30th

> > >

> > > Chicago, IL

> > > October 21st

> > >

> > > Dallas, TX

> > > November 18th

> > >

> > > Denver, CO

> > > Fall

> > >

> > > Detroit, MI

> > > Fall

> > >

> > > Houston, TX

> > > November 11th

> > >

> > > Kansas City, MO

> > > May 13th

> > >

> > > Long Island, NY

> > > May 20th

> > >

> > > Miami, FL

> > > Fall

> > >

> > > New England

> > > June 10th

> > >

> > > New Jersey - Central

> > > June 4th

> > >

> > > New Jersey - Northern

> > > June 17th

> > >

> > > New York City, NY

> > > October 28th

> > >

> > > Northern Michigan

> > > June 10th

> > >

> > > Philadelphia, PA

> > > Fall

> > >

> > > Raleigh-Durham, NC

> > > October 7th

> > >

> > > San Francisco, CA

> > > November 4th

> > >

> > > Sarasota, FL

> > > April 23rd

> > >

> > > Seattle, WA

> > > Fall

> > >

> > > Tampa, FL

> > > May 13th

> > >

> > > Washington, DC

> > > October 28th

> > >

> > > Baltimore, land

> > > 2007

> > >

> > > Las Vegas, Nevada

> > > 2007

> > >

> > > Los Angeles, California

> > > 2007

> > >

> > > San Diego, California

> > > 2008

> > >

> > > If anyone wants to get into a walk in some manner,

> > there are many

> > > different opps, and ways to, even from home if

> > need be...then call 1

> > > 866 WALK ALR or email walks@...

> > >

> > > Anyways, I really would like to talk more with

> > folks about Lupus and

> > > such. Currently, I just started Imuran, plus I do

> > Plaquenil, and

> > > Prednisone. I have done Cellcept and Methotrexate

> > in the past...I

> > > deal with a lot of chronic pain and fatigue, pain

> > and fatigue are

> > > not even the words...it takes a lot of work to

> > live with Lupus...

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

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