I have been doing this RA thing for over 30 years and have a set of diseases
and initials that go along with the auto immune stuff that rivals Rosie's!!
Every now and then acceptance deserts me and I get frustrated, angry, all
that sort of stuff--not guilty, though--for today--and that is always
subject to change--grin--I try to just live my life today--I pick two things
on my list to do--might be washing the dishes--or changing the linen on the
bed--I factor in some energy left to do something I enjoy like puttering
around in the garden--though I have my garden set on maximum self care by
using native plants and things that take care of themselves--I have my house
on the same regimen--I do what I can and leave the rest--As far as meds--I
have been on pred since God was a child--back in the day there were few
other options to allow me to live life--I am down to 5mg a day and that is
as low as I can go--I am also on Enbrel and mtx--I think that sometimes I
skate on the edge of a razor.  The trade is side effects of meds vs quality
of life--and I have had to work to find a med regimen that works without the
side effects doing a number on me.....I rest--I flop in the  pool when
everything hurts--I try to live in the moment and not worry about dust
kittens.  I sometimes  get upset about what I can't do--but that just uses
energy I do not have--so I work on appreciating what I can do....like get to
know nice lupies on the puter....anyway welcome to our little corner of the
world--and don't listen to Rosie about the chocolate--send it all to me--I
have a special vault that will keep your chocolate secure from acknowledged
chocoholics......

G'day!
And thank you all for such a warm and lively welcome!!!!
Wow. I think I needed to hear everything every single one of you said.
Honestly.
Let's see....there was a question about meds....
I don't know how many of you are familiar with the docs in NZ, but I
have to say one thing....they do not like handing out drugs. GEEZ! And
they question EVERYTHING! So for now I am on Diclofenac
(anti-inflammatory....I miss my Vioxx!!!!), klonopin for anxiety (been
on that one for a long time), and they just started me on effexor for
depression (used to be on Wellbutrin....but that was in the
States...they don't have that down here).
As far as meds go, that's it. I am treating things as they come up.
Because I don't want to do the steroids, I am 'robbed' of that
potentially normal lupus life, but now I don't work, so I figure....I
would prefer not to continuously pump my system full of drugs. I almost
died last year from my lupus responding to an abnormally high level of
seizure meds in my system. I had been on the same script for years, but
the lupus just decided to have its way with me. That was WEIRD. The doc
first brushed off my dizziness with an inner ear infection and told me
I would be fine in 6 weeks. After falling on my head 25 times, not
being able to watch tv, and going to the movies and not being able to
focus on the screen at all....went to the doc again....he asked why I
hadn't been back...I mentioned the 6 weeks comment, he takes my blood
and calls me that afternoon and cuts my dose in half (risking a grand
mal seizure)...tells me I am severly toxic (I have been told I am rude
or that I look funny, but toxic was news to me!). So, he explained that
most often this type of drug build up and poisoning is found in an
autopsy....I was very polite and told him thank you.
I haven't experienced seizure problems (woo-hoo) but I have the
klonopin which doubles for seizure stuff. Other than all that
blah-blah....no meds. Although I feel I have tried everything at least
once. I decided the docs in the States liked my guinea pig attitude.

To Susan: I am so sorry about the miscarriages. My partner and I have
gone through two in the past 5 months and I know it hurts. I am sorry
you are having to put the idea of more children behind you. It sucks.
Feel free to fret and vent and fuss all you want....I have a good ear
for that.
To Rosemarie: Yep, I remember you....thank you for directing me here.
You know with all those letters, you should be able to construct a PhD
or something and get paid big money for it. I'll start campaigning if
you would like. As for Chocolate....you are talking to a fellow addict.
They say that admitting there is a problem is the first step....I just
don't see that there is a problem.
To Alix: I think in some ways I must ghost you or something....because
I pretty much do the same thing...what I can, when I can, then I call
it quits. Two things: you knew God as a child???? You are sooo cool!
Secondly, why in the world would you lock away chocolate? Are you sure
it isn't just a secret stash for yourself???
To Char: I think you may have hit the nail on the head....I do grieve
for what I once had, who I used to be. I don't know  how to deal with
that grief & when you combine it with the  pointlessness that wraps its
tentacles around me.....ick. I would rather make out with a Yeti. So, I
have gone through terrible traumas and have been given all sorts of
lovely labels in the past (they do that in the mental health system in
the States OCD, SAD, CDD, PTSD) ...I have gone through a lot of pain in
my 32 (okay almost thirty two) years...I have learned to cope with the
loss of a child, the betrayal of my mate, humiliation of the public,
sexual, verbal, and physical abuse....I have been therapied to the max.
But this....this is all different. This is all about me stepping back
and saying, I don't have control over this situation. In every other
situation I have coped....learned to mentally deal with things, heal,
move past the pain, live again.....this time, the physical part of this
disease keeps me from moving ahead....I wake up to it every day and it
doesn't matter what I tell myself.....I am not coping too well. And
that is pretty rare for me. I will take all advice.
To Gwen: Thank you for welcoming me.....please pass on any wisdom,
comments, humour, and if you must....insults to me....I am a willing
participant. Curious....what anti-depressants are you on and have you
been on....as mentioned earlier....I swear I should have been paid for
all the drug experiments they have pushed on me. Occasionally I check
to make sure there aren't wires hanging from the back of my head!

To all of you.....Thanks!!!!! And do any of you have any really good
dark chocolate brownie recipes you would care to share? I have one but
I left it back in the states and they really don't seem to know what
brownies are here in NZ. This isn't good....not good at all!!!!
Cheers!
sending warmth, peace, and light,
awyn