Bob,

oh boy..

While I don't have CNS lupus, on a monthly basis I do have what I call
"micro-flares" - during <clears throat> "that time" I can become completely
irrational (yes, Andy, more so than usual!) and depressed.  It has put me in
some pretty dark, horrific places but it lasts a few hours or a day or so at
most nowdays.  I went into a deep depression before I was diagnosed and was
on an anti-depressant for 1.5 years.  I could list all the reasons that
would explain why that depression was clinical and based on the disease but
i'll spare you for now.

Unfortunately, I don't know any easy answers.  What, if any, medication is
she on?  The best I've heard for CNS is also the most destructive - Cytoxan
IV.  This is a chemo drug that has to be given intravenously (hence "IV".)
Given orally it causes bladder cancer.  given IV it still has this potential
but it is reduced and there is a med that helps protect the bladder while on
this treatment.  It is the only medication that I am aware of that actually
crosses the blood-brain barrier and deals with the immune components there.
The reason CNS lupus is so hard to treat is because of this blood-brain
barrier which I'm sure you've heard of.  Anti-depressants can help sometimes
but not always.  What is her hormone situation?  It sounds like you think
this is somewhat cyclic.  While female hormones can exacerbate autoimmune
disease, we found that being able to control them somewhat (birth control
pills) keeps these mood swings and micro-flares at least to a minimum
duration and more predictable.  I don't know if that would be of value for
her.

For you... have you sought counseling for yourself?  Of course you can talk
here about anything you need to talk about.  Anything we can help with we
will.  I believe these diseases are sometimes harder on the caregiver than
the patient.  Especially when men, who have the genetic need to "fix"
things, are confronted with something they can't fix.  So you need to take
care of yourself during these times as best you can while trying (as it
sounds you are doing) to understand that this is the disease talking, not
her.  or not talking as the case may be.

Methotrexate is another drug often given for CNS patients and I have seen it
help a couple of my friends.  Ultimately though they ended up on Cytoxan for
several weeks.  Sadly, the medical care I've seen in places like Az is
spartan at best.  My sister is being "treated" for Lupus and MS in NM.  I
use the term "treated" lightly.

If she is on steroids - these drugs can add to the mood swings.

a big problem - and I know it's irrational and illogical - is that when a
woman is in this mode regardless of the root cause - the last thing you can
say is "oh, it's 'that time' - and it doesn't matter if you're referring to
that time hormonally or that time due to the disease.  We hate that we are
out of control as much as you hate that it tears you both up.  This becomes
what my hubby calls spiraling.  I feel bad for having lost it, he says
something sensitive like "I know this isn't you, it's the disease." which
then just pisses me off, then I snap back about that and he pouts, then I
run off and cry, then I think about what a horrible person I am and I don't
deserve him, then I scream at God for letting this happen, then... you get
the idea. it just goes down and down until my self-hatred is so strong that
I can not bring myself to even communicate with him because I'm a failure
and I'm just going to screw things up further and why the hell doesn't he
just  let me die so he doesn't have to deal with all this and...

so.... i guess you could say I'm quite familiar with these thought patterns.

When i'm not in that mode, it is so tragic it's funny.  When I am in them -
well, very bad things look like good ideas.  I'll leave it at that.  The
good thing is, he does stand by me and he does do all he can to understand.
He also knows it's temporary and that gives him hope that "tomorrow's
another day."  But it is hard on him and i have lingering guilt over it.

of course, it sounds like you're dealing with much longer bouts with this
and intractable communication problems.  While it is an organic disease,
some counseling might help.  At least it might give her the ability to see
more clearly what she's experiencing (outside the haze and confusion of the
disease) and you some tools for coping.  I wouldn't suggest this *during*
one of these stages. What I would suggest is talking to a professional about
it - about the best course of action for helping both of you cope.

And of course, the last requirement is that you be a perfect BF and never
upset her. :P   I am joking of course, though I would imagine right now
you're not in the mood for such humour.  Truth is, without humour it is very
hard to get through these things.  Even in my darkest modes I can sometimes
find myself able to say really dark humour comments that are oddly
comforting.  But I had to grow that ability somewhat.  I don't know where I
learned it - perhaps it just came from within.  Hubby refers to it as Kitty
Humour.

i hope some of this has helped and as I said, please feel completely free to
talk about this here.  Not everyone here is a patient - not for autoimmune
disease that is.  Some of us (Andy!) should be mental patients. :-)

kcat the verbose

Hi Bob,
My husband and I both know and understand your problem. Sometimes I think
our partners can give better insight into what it is like. Unfortunately,
most of them do not post or read the threads. I have had many episodes that
involved my CNS. They took a long time to resolve themselves and it was a
nightmare for me and my family. It took very high dosages of prednisone and
months before things improved. My problems were complicated by pernicious
anemia that had advanced to the point were it was also causing neurological
problems. I wondered if your GF had ever been checked for it. Just a
thought. Prednisone in itself can also cause wild mood swings, especially at
a high dosage. I don't really know what to suggest in the way of coping with
her during the difficult times. All I can say is that you must keep in mind
that it is her illness talking, not her. Talk to us whenever you feel the
need. We like to help if we can.
BJ-Sk. Canada