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Medical Forum / Diseases and Disorders / Lupus / June 2004

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Where is everybody?

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Beverley - 10 Jun 2004 14:19 GMT
Just wondering where everyone is. Very few posts. Very quiet.

I think I'm going to email a bunch of people and double check on them.
Bev
BJ - 10 Jun 2004 14:26 GMT
Hi Bev,
I am here, but busy and tired after my trip. There is so much to catch up on
around here. It is also planting season. I am trying to get annuals planted.
It has been raining a lot, so that isn't easy. You looked so lovely in the
wedding pictures. Gad, you are pretty. Thank you for sending those photos
along.
BJ-Sk. Canada
> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
Beverley - 10 Jun 2004 17:55 GMT
Umm, pretty????? My good looks got up and left a long time ago. But I will
admit that I think I looked about as good as I could get for being me. LOL
The dress was lovely and the shoes were comfortable. Thank goodness.

My pretty flower baskets that hang from the porch, semi-shade, are frying in
this heat. I've kept them watered but it's just too hot for them.
Thunderstorms expected here this evening and then maybe a few days of
slightly cooler weather.
Bev

> Hi Bev,
> I am here, but busy and tired after my trip. There is so much to catch up on
[quoted text clipped - 7 lines]
> > I think I'm going to email a bunch of people and double check on them.
> > Bev
Norman & Wende - 10 Jun 2004 14:54 GMT
hiding from the rain.  Had to go have both of my hip joints injected
yesterday. When I saw the size of the needle he was going to stick in there
I knew I was in big trouble. OOOWWWW!!!!! So I slept most of rainy day away.
Planning on going to the houseboat this weekend to fish and get some fresh
air. Get well Bev.  I know you have been ill!!!!  LOL! W
> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
Andy - 10 Jun 2004 15:24 GMT
>hiding from the rain.  Had to go have both of my hip joints injected
>yesterday. When I saw the size of the needle he was going to stick in there
>I knew I was in big trouble.

"I've seen smaller enema syringes"...
Signature

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

Norman & Wende - 10 Jun 2004 23:27 GMT
> >hiding from the rain.  Had to go have both of my hip joints injected
> >yesterday. When I saw the size of the needle he was going to stick in there
> >I knew I was in big trouble.
>
> "I've seen smaller enema syringes"...
LMAO!!!!!!!  Bad Andy!! You are too funny. Thanks .  W
Beverley - 10 Jun 2004 17:47 GMT
The houseboat sounds like great fun. Nap, rest, the quiet lapping of the
water, yeah, now that's living.
Bev

> hiding from the rain.  Had to go have both of my hip joints injected
> yesterday. When I saw the size of the needle he was going to stick in there
[quoted text clipped - 5 lines]
> > I think I'm going to email a bunch of people and double check on them.
> > Bev
Cindy - 12 Jun 2004 14:58 GMT
Wende,
Did Dr. Willis do it, or Mr Flynn? Mr. Flynn does those injections so much
more pain free. I told him he needed to give Dr. Willis lessons. I barely
flinch when Flynn does them, but Dr. Willis OUCH!!!!!
Hope you are feeling better. Cindy
Chaos Hill - 10 Jun 2004 14:58 GMT
Hi - I am sort of here, early morning catching up - but have a ton of things
to do. Will fill you in on big CGT later!!! Hope I survive it!

Hanging in there and wrestling with achy bones and hands that are truly
grumpy, otherwise managing ok

Anyone heard from Janers since the pain clinic?

Leslie
> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
Beverley - 10 Jun 2004 17:58 GMT
Oh, good a CGT!!!!!! We all need some of those!

Janers left on vacation this morning. They did something and it seemed to
help - not a perfect answer to her pain but still a big help. I know she was
looking forward to her trip.
Bev

> Hi - I am sort of here, early morning catching up - but have a ton of things
> to do. Will fill you in on big CGT later!!! Hope I survive it!
[quoted text clipped - 9 lines]
> > I think I'm going to email a bunch of people and double check on them.
> > Bev
Andy - 10 Jun 2004 15:24 GMT
>Just wondering where everyone is. Very few posts. Very quiet.

[font=150 point arial bold]BOO![/font]
Signature

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

Beverley - 10 Jun 2004 18:06 GMT
Typical Andy, short, to the point, and always done in a big way. LOL
Bev

> >Just wondering where everyone is. Very few posts. Very quiet.
> >
> [font=150 point arial bold]BOO![/font]
Sherry - 10 Jun 2004 17:35 GMT
Present and wondering the same thing.

Hugs,
Sherry

> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
Beverley - 10 Jun 2004 18:01 GMT
It's very quiet. I don't think there have been 100 posts total in the last
five days. But just let me be so busy I don't have time to read and there
are 100 per day!! LOL
Bev

> Present and wondering the same thing.
>
[quoted text clipped - 5 lines]
> > I think I'm going to email a bunch of people and double check on them.
> > Bev
J - 10 Jun 2004 19:44 GMT
> It's very quiet. I don't think there have been 100 posts total in the last
> five days. But just let me be so busy I don't have time to read and there
> are 100 per day!! LOL
> Bev

I'm taking a break so you can rest. <grin>
J
Maggie - 10 Jun 2004 21:24 GMT
I made two posts yesterday!  Did too!

I just haven't posted much as my mind has been reflecting heavily & when
that was about to drive me to break, I just handed it straight over to
God.  Haven't been the same since....

Planning on doing the church thing, so long as I don't have to wear a
dress. lol!  Done warned 'em all!  

Bev, that dress was a beautiful color on you!  It was just gorgeous &
well worth the wait. : )  

I'll be around.  Wondering if Candi is okay?  Anybody talk to her?

Maggie
Pigmet - 10 Jun 2004 22:17 GMT
Here I am!  ME! Pigmet!

Mair is here but she is sick... we can't tell if its lupus or somethin else.
She is very fatigued.  I am in charge of her books and pillows, so I better
get back... it is a very important job!

Love and Devotion to all my friends on the lupus newsgroup,
Pigmet.

> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
Sherry - 11 Jun 2004 02:01 GMT
Pigmet,
Thanks for letting us know that you are taking care of Mair and checking the
group for her.

Make sure you let her know that we are thinking about her, keeping you and
Mair in our prayers and hoping that she gets better quickly!

Hugs,
Sherry

> Here I am!  ME! Pigmet!
>
[quoted text clipped - 9 lines]
> > I think I'm going to email a bunch of people and double check on them.
> > Bev
Beverley - 11 Jun 2004 03:46 GMT
Bruce's computer crashed and he hasn't found a way back to the group yet.
Bev

> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
J - 12 Jun 2004 10:54 GMT
> Bruce's computer crashed and he hasn't found a way back to the group yet.
> Bev

Good to hear he's okay even if his computer isn't..
Thanks Bev,
J
Beverley - 11 Jun 2004 03:49 GMT
She's been a busy beaver but loves Florida. I think she's doing well from
everything she has said. Such excitement in her email you can tell she's
really happy.
Bev

> Just wondering where everyone is. Very few posts. Very quiet.
>
> I think I'm going to email a bunch of people and double check on them.
> Bev
REP - 11 Jun 2004 06:36 GMT
> Just wondering where everyone is. Very few posts. Very quiet.

I have (another) kidney infection and am in the low-function mode. I
mean, more so than usual.

Signature

"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather

BJ - 11 Jun 2004 14:55 GMT
I am sorry to hear than Rep. I hope you kick the infection soon. Take care.
BJ-Sk. Canada

> > Just wondering where everyone is. Very few posts. Very quiet.
>
> I have (another) kidney infection and am in the low-function mode. I
> mean, more so than usual.
Beverley - 11 Jun 2004 19:48 GMT
Kidneys are very important. Please take care of yourself!
((hugs))
Bev

> > Just wondering where everyone is. Very few posts. Very quiet.
>
> I have (another) kidney infection and am in the low-function mode. I
> mean, more so than usual.
Lee Thompson-Herbert - 11 Jun 2004 11:42 GMT
>Just wondering where everyone is. Very few posts. Very quiet.
>
>I think I'm going to email a bunch of people and double check on them.
>Bev

Still around.  Spent the last two days dealing with my asshat internist,
who's in charge of my pain control meds because that's how Kaiser does
things.  Unfortunately, this bozo graduated from med school in the 80s,
when the philosophy on pain control was "grit your teeth and bear it
because opiates are dangerous and eeeeeeevil."  We had a conference today
and I used the Blugeon of Reason on him.  I was really, really pissed off
at being treated like a junkie when all I want is reasonable pain control
so I can have a life.  Especially since I've been doing everything else I
possibly can besides the painkillers and it's just not enough.  The Enbrel
just isn't working so hot anymore.  

I now have my painkiller scrip re-written so I actually _have_ 30 days
worth of pills now instead of 25 days worth (gee, could that be why I
was constantly getting it filled "too soon"?).  And I'll be getting a
different internist.  This was just the latest thing he's done that pissed
me off.  I got dumped on this doctor when my previous (extremely competent)
one retired.  I obviously need to find another doctor that actually likes
having educated patients...

Signature

Lee M.Thompson-Herbert        lee@retro.com         KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

BJ - 11 Jun 2004 16:03 GMT
Gad, does that doc ever need a kick in the butt. Like to see him live with
pain all the time. Glad you got something though. Sure hope it works for
you.
BJ-Sk. Canada
> >Just wondering where everyone is. Very few posts. Very quiet.
> >
[quoted text clipped - 19 lines]
> one retired.  I obviously need to find another doctor that actually likes
> having educated patients...
Beverley - 11 Jun 2004 19:51 GMT
Yes, it sounds like you need a new doc. Wishing you lots of luck finding
someone really great. Our local hospital has a pain clinic and their whole
thing is people should not have to live with pain, it can be managed.
Bev

> >Just wondering where everyone is. Very few posts. Very quiet.
> >
[quoted text clipped - 19 lines]
> one retired.  I obviously need to find another doctor that actually likes
> having educated patients...
J - 22 Jun 2004 12:47 GMT
> Still around.  Spent the last two days dealing with my asshat internist,

That term made me chuckle.
How's Mr. AssHat, or better yet, how is your pain doing Lee?
Thinking of you,
J
Lee Thompson-Herbert - 23 Jun 2004 03:39 GMT
>> Still around.  Spent the last two days dealing with my asshat internist,
>
>That term made me chuckle.
>How's Mr. AssHat, or better yet, how is your pain doing Lee?

Will probably get a different internist soon.  I'm going to talk to my
rheumatologist to get recommendations when I see him at the end of July.
I'm tired of fighting with the current guy, and I want someone who is actually
up on the meds I take, or is at least willing to _look_up_ things.  This
guy just wants to shove me off to different specialists, which since he's
supposed to be coordinating things isn't always the right thing to do.

The Enbrel is just barely working anymore, which means life sucks.  I'm
hoping that insurance will approve coverage for Humira, or I'm going to
have a real problem.  My next choices after that are Immuran or Cytoxan,
and given my previous reactions to Arava and methotrexate, I don't *really*
want to try either.

And I'm developing pressure sores on my butt from sitting at my desk too
much because I've been stuck at home.  I just received a new high-tech
seat cushion to hopefully fix that problem.  See, if I were in my wheelchair
here at home, this would have never happened, because _it_ has a decent
cushion...

Argh.  We'll be in the new house Real Soon Now.  Which will at least solve
some of the problems.
Signature

Lee M.Thompson-Herbert        lee@retro.com         KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

Timothy Luders - 23 Jun 2004 03:53 GMT
>>> Still around.  Spent the last two days dealing with my asshat internist,
>>
[quoted text clipped - 22 lines]
> Argh.  We'll be in the new house Real Soon Now.  Which will at least solve
> some of the problems.

Hi Lee, will I see you on Sunday? Chances are you won't see me even if I do
see you.

Timothy
Lee Thompson-Herbert - 25 Jun 2004 06:15 GMT
>Hi Lee, will I see you on Sunday? Chances are you won't see me even if I do
>see you.

The White Rats are in the Leather Pride contigent, currently #87 (they keep
changing our contigent number).  I'll be there, getting pushed along in my
wheelchair.  Parade starts at 11am, we expect to step off the start line
somewhere between 11:30am and noon.  

Signature

Lee M.Thompson-Herbert        lee@retro.com         KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

Cindy - 12 Jun 2004 15:04 GMT
I am here, but my brain has been like a cement mixer. I can't seem to
concentrate, and I just have been so tired.

Have been having lots more anxiety lately, and my counselor doesn't know
why...Me either.

I have been trying to read the post, but somedays I just miss them...
Hugs Cindyd
CP - 14 Jun 2004 00:25 GMT
CP here and pleased about making it through numerous family and work
events (both planned and unplanned) without completely crashing.  Could
it be that the Plaquenil started 5-6 months ago is the reason?

I resisted Plaquenil due to concern about the potential eye problems but
if life can be like this I regret not starting it long ago.
Grace Casselman - 14 Jun 2004 03:47 GMT
I'm glad it seems to be working. As you said, it takes such a long time to
work, that I was never sure if it helped...

G.

> CP here and pleased about making it through numerous family and work
> events (both planned and unplanned) without completely crashing.  Could
> it be that the Plaquenil started 5-6 months ago is the reason?
>
> I resisted Plaquenil due to concern about the potential eye problems but
> if life can be like this I regret not starting it long ago.
BJ - 17 Jun 2004 15:35 GMT
It could indeed be the plaquinil, CP. Glad things went so well for you. It
feels good to get through some things without feeling like you are going to
drop dead. <g> I'm happy for you.
BJ-Sk. Canada
> CP here and pleased about making it through numerous family and work
> events (both planned and unplanned) without completely crashing.  Could
> it be that the Plaquenil started 5-6 months ago is the reason?
>
> I resisted Plaquenil due to concern about the potential eye problems but
> if life can be like this I regret not starting it long ago.
J - 22 Jun 2004 12:37 GMT
> CP here and pleased about making it through numerous family and work
> events (both planned and unplanned) without completely crashing.  Could
> it be that the Plaquenil started 5-6 months ago is the reason?
>
> I resisted Plaquenil due to concern about the potential eye problems but
> if life can be like this I regret not starting it long ago.

I was sure glad to hear that it seems to be helping.
Keep in touch,
Hugs
J
 
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