Welcome new members & some info

[Guest guest]

Hi all,

I wanted to take this chance while I can to "welcome" all of our newest members...

Please feel welcome and start feeling at home, because here at The Lupies, you will definitely feel the love, and feel at home.

You can bitch, moan, cry, anything here (well just about anything...lol)

We are all here for you and one another...

Please feel free to jump into any or all conversations even if they are addressed to someone else, we don't mind anyone jumping in...

You WILL get alot of email from our group so you may feel that reading the board from the website might be better for you, or you may feel that daily digest is a better route for you.

If you are getting overwhelmed by tons of email just ask any of the moderators to change you, or you can do it yourself on the site.

I know when a new member asks to join I automatically switch them to daily digest if they joined on individual only because I don't want the overwhelming mail to scare them away when they truly need us.

A little bit about myself - Hmmmm I formed this group back in the fall of 2000 after I had suffered my first major stroke in Jan of 2000. During that stroke was when it was determined that I had Lupus SLE with kidney involvement, I also had TTP short for thrombocytopenia purpura a rare blood disorder involving the platelets. I did not know a thing about lupus so I did all the researching I could, throughout that researching I met the most of the moderators here and asked them to help me out with the board and help others like ourselves become educated and know they had somewhere to go for support.

This board is not just a board, it is a family we have been through alot together and you will find that many of us will be there for you through thick and thin...

My health has only gotten worse throughout the years but I am determined to keep this home for the many members. Several of us have meet one another, and formed even greater bonds and who knows you may find someone that lives near you and you too may meet and form strong bonds.

Our health is important and you MUST be educated as best as possible because alot of our doctors are too quick to push any new symptoms off and blame it on the lupus and leave it at that, when it could possibly be some new disease secondary to the lupus. If you are ever experiencing something new tell us about it, ask us about it, because 9 times out of 10 one of us have been there and we can steer you in the right direction. I work with my rheumy on questions from the members here if I cant get them an answer or if cant get them an answer and he will usually tell me what to inform you. He also refers his patients to my group as he (well hidden of course) is a member here, so he does keep an eye on us just not as often as I would like (hehehehehe)

If ever you have any questions but don't want to post them for all to see, please feel free to email any of the moderators or myself personally that is what we are here for.

So to finish up I have not been around much because not only am I suffering from a nasty lupus migraine, I also can not use both hands to type, due to a ganglion cyst on my right hand/wrist and it makes using that hand almost unbearable. I need yet another surgery (I'm well known for being the one having the most surgeries here) and am awaiting a date to have this removed so until then I suffer (lucky me)

SO welcome to the family as I call it and please feel free to give us a little info about yourself so we can come to know you better...

Take care...

Much Love,

Deanna

Owner & Host

~ ~LUPUS Serenity Prayer~~

Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of doctors I shot when they said, "You're perfectly healthy, it's all in your head"

[Guest guest]

Hope your migraine is better soon, and fewer in frequency! I suffer

those dang things and you have all my sympathy! Luckily my meds are

keeping them under control lately! I have a new lease on life...

Hugs......Deb

> Hi all,

> I wanted to take this chance while I can to " welcome " all of our

newest

> members...

>

> Please feel welcome and start feeling at home, because here at The

Lupies,

> you will definitely feel the love, and feel at home.

>

> You can bitch, moan, cry, anything here (well just about

anything...lol)

> We are all here for you and one another...

>

> Please feel free to jump into any or all conversations even if they

are

> addressed to someone else, we don't mind anyone jumping in...

>

> You WILL get alot of email from our group so you may feel that

reading the

> board from the website might be better for you, or you may feel

that daily

> digest is a better route for you.

>

> If you are getting overwhelmed by tons of email just ask any of the

> moderators to change you, or you can do it yourself on the site.

> I know when a new member asks to join I automatically switch them

to daily

> digest if they joined on individual only because I don't want the

> overwhelming mail to scare them away when they truly need us.

>

> A little bit about myself - Hmmmm I formed this group back in the

fall of

> 2000 after I had suffered my first major stroke in Jan of 2000.

During that

> stroke was when it was determined that I had Lupus SLE with kidney

> involvement, I also had TTP short for thrombocytopenia purpura a

rare blood

> disorder involving the platelets. I did not know a thing about

lupus so I

> did all the researching I could, throughout that researching I met

the most

> of the moderators here and asked them to help me out with the board

and help

> others like ourselves become educated and know they had somewhere

to go for

> support.

> This board is not just a board, it is a family we have been through

alot

> together and you will find that many of us will be there for you

through

> thick and thin...

> My health has only gotten worse throughout the years but I am

determined to

> keep this home for the many members. Several of us have meet one

another,

> and formed even greater bonds and who knows you may find someone

that lives

> near you and you too may meet and form strong bonds.

>

> Our health is important and you MUST be educated as best as

possible because

> alot of our doctors are too quick to push any new symptoms off and

blame it

> on the lupus and leave it at that, when it could possibly be some

new

> disease secondary to the lupus. If you are ever experiencing

something new

> tell us about it, ask us about it, because 9 times out of 10 one of

us have

> been there and we can steer you in the right direction. I work with

my

> rheumy on questions from the members here if I cant get them an

answer or if

> cant get them an answer and he will usually tell me what to

inform

> you. He also refers his patients to my group as he (well hidden of

course)

> is a member here, so he does keep an eye on us just not as often as

I would

> like (hehehehehe)

>

> If ever you have any questions but don't want to post them for all

to see,

> please feel free to email any of the moderators or myself

personally that is

> what we are here for.

>

> So to finish up I have not been around much because not only am I

suffering

> from a nasty lupus migraine, I also can not use both hands to type,

due to a

> ganglion cyst on my right hand/wrist and it makes using that hand

almost

> unbearable. I need yet another surgery (I'm well known for being

the one

> having the most surgeries here) and am awaiting a date to have this

removed

> so until then I suffer (lucky me)

>

> SO welcome to the family as I call it and please feel free to give

us a

> little info about yourself so we can come to know you better...

> Take care...

>

>

> Much Love,

> Deanna

> Owner & Host

>

> ~ ~LUPUS Serenity Prayer~~

> Lord, grant me the serenity to accept the things I cannot change,

the

> courage to change the things I can, and the wisdom to hide the

bodies of

> doctors I shot when they said, " You're perfectly healthy, it's all

in your

> head "