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Medical Forum / Diseases and Disorders / Lupus / March 2006

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Lupus Criteria - Update

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Nutty - 19 Mar 2006 16:20 GMT
I posted earlier last week about being diagnosed with lupus.  The
rheumatologist has confirmed that I have SLE.  She said that having the 4
criteria is for study purposes.  I may not get in a study, but with my
clinical diagnosis and blood work I have SLE.  She also informed me that it
could take a while (possibly weeks or months) to get over the inflammation
in my lungs and heart.  I am taking 20 mg of prednisone and hydromorphone
for pain.  To date, I feel no improvement in the inflammation after a month
on prednisone.

So, the reality of having SLE is slowing sinking in.  This is tough for me
to adjust as I'm sure it has been for everyone else here.  I have 2 preteen
girls and am normally very active.  I am also the working parent of the
family.  It's hard to accept that I may no longer be independent or reliable
(hopefully for the short-term).

Thanks to everyone who responded to my earlier post and provided several
excellent links to information on SLE and APS.  As suggested in the
responses, I think I need to hang around here for awhile.  It's great to
have this support group.

Nutty
J - 20 Mar 2006 19:37 GMT
> I posted earlier last week about being diagnosed with lupus.  The
> rheumatologist has confirmed that I have SLE.  She said that having the 4
[quoted text clipped - 10 lines]
> family.  It's hard to accept that I may no longer be independent or reliable
> (hopefully for the short-term).

hello Nutty,
I suppose it's a relief to receive confirmation and validation of what is wrong
and that you're on the right treatment.
Sounds like a big responsibility to be the only income earner in the family.
Hopefully your preteens are trainable and can be delegated tasks to do every day
and eventually perhaps they can also contribute by workng at part-time jobs,
while getting their education and living in your home.
Kids need that to prepare theim for the realities of the work environment out
there, along with fun and family times. It's a handful (organizing family
labor), but you hold the power, the $$$ <grin>

Did somebody suggest that you get The Lupus Book (3rd edition), by Doctor Daniel
Wallace?
A Guide For Patients And Their Families  Probably worth the investment.

I'm not sure why others aren't replying; makes things look cliquish, but they'll
come around.
Just jump into any thread where you have something to say or some of us
sometimes post CGT's (cheesy good things - that happened in our daily lives). I
also run Roll Calls when my arms aren't bothering me too much. Maybe I'll do
that in the next month or so and you can get to know everybody who replies.

Good luck with the treatment. let us know how i'ts going,as you have time.
Best,
J
Andy - 20 Mar 2006 19:58 GMT
In article <441EF67B.5F5C4E39@execulink.com>, J <mdates@invalid.inv>
wrote
[
>I'm not sure why others aren't replying

Because it's Monday :)

Hello, Nutty!
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Marvie's Wife - 21 Mar 2006 03:45 GMT
> In article <441EF67B.5F5C4E39@execulink.com>, J <mdates@invalid.inv> wrote
> [
[quoted text clipped - 3 lines]
>
> Hello, Nutty!

Yes, Monday's!!...

Hi Andy...nice to meet you.

Nutty
Nutty - 21 Mar 2006 03:46 GMT
>> [
>>> I'm not sure why others aren't replying
[quoted text clipped - 8 lines]
>
> Nutty
candi bowen - 21 Mar 2006 17:33 GMT
Sorry Nutty, but I've been sick for a week & a half with that chest-like flu
going around here in OH. I'm generally pretty active also, horses,
grandkids, etc. & in that order, but this virus really kicked my tush. That
book by Daniel Greene is excellent, by the way. I was dx'd when my son was a
pre-teen also so I can relate. It's very frightening to be told something
like that, & I freaked, like probably everyone here did, but it gets better,
emotionally, thru the years. Most of the time, anyway. Hope you're feeling
better! Candi

> From: Nutty <netzer29@hotmail.com>
> Organization: Bell Sympatico
[quoted text clipped - 14 lines]
>>
>> Nutty
Nutty - 21 Mar 2006 03:44 GMT
>> I posted earlier last week about being diagnosed with lupus.  The
>> rheumatologist has confirmed that I have SLE.  She said that having the 4
[quoted text clipped - 36 lines]
> Best,
> J

Thanks J, I really appreciate your reply.  I will stick around and
hopefully get to know everyone.

Funny you should suggest that book.  The hospital I was in (which is a
also a teaching hospital) had a bookstore in the lobby.  We hesitated
buying the book because we were still hoping that I didn't have SLE.
However, DH had a change of heart and bought it for me on the way out.
It is a good book and I've learned a lot about Lupus.

Thanks again.

Nutty
Beverley - 21 Mar 2006 18:48 GMT
Hi Nutty,

When I was Dx'd I unglued because I still thought of lupus as a death
sentence. Now I know better. For me, once I realized I was going live, and
learned about lupus, I was pleased with the Dx. For me it made sense out of
all the times I was seriously ill. And hopefully it will protect me because
they aren't going to fiddle around and ignore problems when and if they
occur; instead they will quickly and aggressively treat the lupus.

The hardest part is learning to live with lupus. Everyone is different. What
I can tolerate - someone else can't. But oh so often I read someone's post
and I've BTDT, and said, "That's lupus, too?" or "Oh, I know exactly how you
feel!" It's odd but this is a wonderful place filled with wonderful
knowledgeable people who are there for you. No one has a magic wand, we
can't make any of it go away, but at least you know there are people who
understand.
Bev

> >> I posted earlier last week about being diagnosed with lupus.  The
> >> rheumatologist has confirmed that I have SLE.  She said that having the 4
[quoted text clipped - 49 lines]
>
> Nutty
 
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