Welcome Debbie

[Guest guest]

Debbie,

Glad to have you aboard. My name is

Cheryl. The sun makes me happy too but it also makes me sick. It

will make you sick too. There is a lot to learn about lupus and you came to the

right place. We get info here plus laughs, tears, and support. Check

out http://www.uklupus.co.uk/lupdat.html

and http://www.lupus.org/.

A support group is of great benefit. I

first got my dx in Los Angeles.

I didn’t know anything about it. There was a large and well

organized support group at the hospital meeting once a week. A Dr. was

there and so was literature. I learned so much. We moved and I don’t

have one in this town. It is a big relief to get the dx isn’t it? I

have been diagnosed in pieces all of my life. If my skin broke out, a guy

looked at that and wondered. When my kidneys acted up the looked at that

and wondered. When I got IBS, they wondered. On and on it went. I

was told many times it was nerves and once I was told not to think about myself

so much! Finally I had arthritis symptoms so bad I went to a

specialist in the field, of course a rheumatologist. Well, I had a huge

batch of questions to fill out. I thought it strange. He talked a

long time and looked me over, looked at my papers and took blood work. When

I came back he said I had Systemic Lupus Erythmatosis!! I was

scared! The only person I knew of who had it died of it. I went

home & looked it up in the dictionary and it said it was a fatal disease! I

was 42 or 43. I told my mom and she cried! It was all so stupid. The

information is so old. Most of us live a long life with lupus. I

learned I have had it since about 16 years old, I am 57 and not dead yet. Since

then I have been seen by several Rheumy’s and still have lupus. I

see you say you don’t have time for lupus. You will or it will bite

you back. WE NEED REST and cannot ovoid it weather we have time or not. Try

to see if there is a local support group in your hosp. Get your husband

involved. Teach him as you teach yourself. You will need his help

to stay as healthy as you can. My husband sat in on a few support

meetings and read the material I gave him and he was very sympathetic and

helpful after that. They can’t help you if they don’t

understand. No one without lupus knows what the fatigue of lupus is. They

think it feels like they do when they are tired but if you feel lupus fatigue

you know its not normal.

Hay, My hubby and I are coming to Vegas on

our anniversary Mar 19th. Glad to hear the weather is

good. I am so exited!

Since I have been dxed with lupus I have acquired

some other things. I got cancer 7 yrs ago and that brought on

fibromyalgia. I had a small stroke. I have arthritis, osteoporosis,

degenerative disk disease, TMJ dysfunction, interstitial cystitis, IBS, beguine

familial tremor, depression, and memory problems. Other than that I’m

great! Lots of here have multiple problems. I seem to get something

new every year now. Ain’t life grand!

From: lv_deb_r

Sent: Tuesday, March 09, 2004

11:37 PM

To: LUPIES

Subject: new to group

I just signed up and Don't know how this works. I am Debbie, just got

the diagnosis this year of lupus. Seems like a

good thing to do - a

support group of some sort. I went through about 5

years of no

diagnosis with all the horrible

" ailments " - finally getting a Name is

a huge relief and a curse at the same time. But so

relieved to " have

something " with a real name. I am a busy

nursing student, with husband

and three kids........so I don't have time for

lupus.