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Medical Forum / Diseases and Disorders / Lupus / November 2006

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Lupus and anger

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gazorpf@yahoo.com - 29 Nov 2006 12:49 GMT
Lupus, like any other chronic illness, causes a weath of unpleasant
emotions. In grieving for what we have lost in our lives, we often get
stuck or revisit the anger phease many times.

Most of the fellow lupus paitients I know are as knowledgeable as their
doctors when it comes to the disease. When someone who is clearly
uninformed is presumptuous enough to judge us, to claim they know why
we are sick, to tell us what magic cure they think exists we are
rightfully angry. Our anger leftover from the grief is likely to add to
the insult.

I was dismayed to see a thread go on and on and on as a result of a
spammer. I am not judging, beccause at times, I have responded to
ignorant people the same way. That said, it would be very distressing
to a newly diagnosed lupus patient looking for support to find a
support group with insults and fighting going on. If that new patient
was me, I would be very unlikely to remain in a group.

Hopefully, this will die down soon. There is a saying in chat, "Don't
feed the troll!" Wishing you all a peaceful time as you prepare to
celebrate the holidays. Remember to let the holidays happen and worry
less about making them happen.
Vance - 29 Nov 2006 21:40 GMT
I have been to several rheumatologist in the area and a well known one in
Dallas, my wife ended up pushing him against the wall when he started it's
in your head stuff.  But my neurologist found my lupus of all people.  He's
kind and nice and said we need to find the problem.  He knows my wife from
work and he said he trust her judgement when she said she knows something is
wrong with me.  Then I took all the pos lab results to my internal doctor
(at the time) and he went on from there.  Got a lot better treatment from
him than any rheummy.  I will NEVER go back to another one.  I will go to a
specialist in the area the disease causes a problem in.

Now I'm teated by a team of specialist and my PCP "manages" my medications
which is extensive, and my pain doctor manages those meds.  But the way we
have it set up now works really well.

Vance
DFW, TX

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| Lupus, like any other chronic illness, causes a weath of unpleasant
| emotions. In grieving for what we have lost in our lives, we often get
[quoted text clipped - 18 lines]
| celebrate the holidays. Remember to let the holidays happen and worry
| less about making them happen.
Shelagh - 29 Nov 2006 22:21 GMT
I feel the same way as you about rheumy's generally speaking. I am sure I shouldn't generalize but it is very difficult not to with all the bad treatment I have had from several in different areas!
So I too now just work to maintain a great relationship with my PCP and she does my general health and meds and pain meds and refers me to the specific area of disease specialists like nephrologist, cardiologist etc... as it goes and it is working very well for me too!
I wish you all the best with your ongoing treatment!
hugs,
Shelagh
http://clik.to/lupus

>I have been to several rheumatologist in the area and a well known one in
> Dallas, my wife ended up pushing him against the wall when he started it's
[quoted text clipped - 12 lines]
> Vance
> DFW, TX
Vance - 29 Nov 2006 22:33 GMT
Thanks.  I just go to my specialist when I think I need to.  Often when I go
to my GI he wants to do testing.  But my entire GI system  has shut down to
a very slow move.   yeah I been to about 5 different rheumy's in Dallas and
in the North Texas area, and didn't get squat out of any of them.  They just
wanted to run more blood test, never even got to see the results, next appt.
same thing more bloodwork.  So it's a waste of my wifes employer's money
(they are self insured) and a waste of our time and effort.

I am very heavy due to heavy steriod use from many doctors over the years so
it's hard for me to have to go anyplace and I have oxygen (in heart failure)
and that's a hastle.  I have to use a walker and my wife has to load and
unload it and take off time from work as I don't drive.  Etc. Etc......

Vance

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http://Cyberblogging.Net
AIM & Yahoo:  cigarpsmoker

I feel the same way as you about rheumy's generally speaking. I am sure I
shouldn't generalize but it is very difficult not to with all the bad
treatment I have had from several in different areas!
So I too now just work to maintain a great relationship with my PCP and she
does my general health and meds and pain meds and refers me to the specific
area of disease specialists like nephrologist, cardiologist etc... as it
goes and it is working very well for me too!
I wish you all the best with your ongoing treatment!
hugs,
Shelagh
http://clik.to/lupus

>I have been to several rheumatologist in the area and a well known one in
> Dallas, my wife ended up pushing him against the wall when he started it's
[quoted text clipped - 15 lines]
> Vance
> DFW, TX
Shelagh - 29 Nov 2006 23:09 GMT
I hear you loud and clear!
and can relate ... last xmass it was heart failure and this xmass it is renal failure!
can't win hey?!
keep on truckin and so will I!
considering any alternatives....well I think I'll just keep on keeping on for now <g>!
got to wonder about all that blood the rheumy's take hey ??? LOL... I picturing rows and rows of vials from all of us stored in someone's lab storage area... doing nothing!
anyhow... luck to you...
hugs,
Shelagh
http://clik.to/lupus

> Thanks.  I just go to my specialist when I think I need to.  Often when I go
> to my GI he wants to do testing.  But my entire GI system  has shut down to
[quoted text clipped - 10 lines]
>
> Vance
 
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