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Get your priorities in order!

Thanks everyone.  Yes, I know, I was ignoring it.  Probably a combination of
different symptoms, and just pig-headed stubbornness,  Denial is a wonderful
thing..sometimes.

My rheumatologist has been great.  He said that with completdely normal
kidneys and a negative dsDNA it isn't strictly lupus..but hell, he also says
thats really an academic argument and we're not going to wait to "tick all
the boxes" and watch me go into a coma in the meantime.  If it waddles and
quacks we treat it like a duck...and worry about the breed of duck later!
(love that one!) So is it lupus?...still strictly not.  Is it some
seronegative lupus like aggressive autoummune thingo---well, yeah that;ll do
for now.  I'm pleased to have a doc thats more interested in getting me
better than whether everything fits perfectly in the holes.

First morning home- happy to be here.  I have to fight the
prednisone....having been away a week my boys are great but the place needs
a CLEAN.  I want to do it all! But if I do it all I'll be stuffed..so I have
to pace myself.  I have an appointment to get my nails done at lunchtime
(good way to break up the day!) and will just try and do some washiing and
groceries.  I'm going to work tomorrow, but not today or Friday.

I'm on daily INRs for the next few weeks.. bought a coaguchek XS machine
yesterday on the way home ($1,000) , so that makes life less painful than
sitting in the lab every day.  Just grateful to have got out of this one
(relatively) unscathed! I am a bit stumbly with my left foot- not sure how
long that will take to clear (if ever) will just have to wait and see

Thanks again guys

Hi gang
Just thought I'd touh base...got homr tonight after 10 days in
hospital.Although strictly speaking I have been diagnosed with primary
antiphospholipid syndrome and not lupus, it is starting to behave more like
it. I thought I was having TIAs but ended up in ICU with autoimmune
cerebritis / encephalitis.  I am already on Imuran and warfarin but over the
past few days have had 2,000mg IV methylprednisone so I feel great now!!
Extra hiccup, my INR freaked out- peaked at 13.6 - so that has taken time to
settle.

Anyway, I'm home today.  I have some residual cerebellar damage, we are
aiming my INR higher (goal 3.5) and I am on long term steroids (25mg
prednisone for the moment).  But hey, I'm here to tell the tale!!!

Hope you all havent melted in the last week...
Lyndal