Well it was infusion day today. I have had this planned for sometime now.
My mom and I were meeting in Victoria, staying at the brand new Marriot
hotel and going for dinner the night before at the Empress - an old and
gracious expensive hotel that has a curry buffet in the old lounge.  Joy.
Anyhow we have had storms from hell here - 12 inches of snow, then pineapple
express and 8 deg c weather with huge amounts of rain all within a two day
period.  We have a mountain to go over to get to Victoria and of course
weather was worse there.  So All in the 2 days before the infusion.  I left
early Monday in the pouring rain and flooding roads and got to Victoria in
time for my general practitioner appointment.  Was all excited - told him
how great I was feeling, how much better the joints were, how terrific my
appointment was with the rehab doctor etc.  He wrote scripts for all my
prescriptions for the year as some had run out.  At the end of the session I
said I had my rituxan starting tomorrow again.  He said "I think you had
test results for me to go over - let me get them".  Oh yeah - crap!!!!!

So the WBC in the blood - up over limit.  several other blood tests over
what should have been.  And the clincher - WBC up in urine - way up so
everything points to another UTI.  You could probably hear my scream all
over the world.  I was so so so pissed off.  No symptoms, not tired, no
neuropathic as usually I have, no urgency, no burning.  Nothing.  Also it
would not culture, so that was no help.

By now I am getting cell calls from my rheumatologist, calls back and forth
between all doctors, I am running off to get even more macrobid to see if I
can get 2 doses in that day and 1 in the morning if they will still let the
infusion go.

Absolutely not - especially with me.  They are afraid they will send me to
the hospital over the holidays with massive infection.  I agree but am so
frustrated.  This is after 3 months of macrobid to try to stop this.  I
stopped the macrobid one month ago.  I now have 1 week of macrobid with
another 1 week in case I need it.  I am taking both weeks and asking my gp
to keep me on it for another 3 months to get through the infusions.

I am so tired of this.  Of course now we are having trouble scheduling, I
spent money on mom and I on the hotel etc. and she came over when really it
wasn't necessary, Pat (my husband) is agin scheduling things differently
(which I know isn't always easy when it takes 2 nights each time of being in
Victoria in order to make sure you make it over the Malahat without hitting
snow and ensuring we are there at 9:00 am sharp so the meds can get it.
Most important though is why the infections keep happening.  Am so tired of
it.

Anyhow that was my couple of days.  Rescheduled for the 18th so long as the
infection is gone.  Talk of going back to the urologist but that won't be
for a bit due to scheduling etc.  On the positive side I missed a one day
power outage, a huge wind storm, the snow is gone thanks to the rain
yesterday and I got a new outfit, my christmas shopping done and some time
with my mom.  bought a new mattress for our new King size bed that should be
here anytime and had a lovely night in an incredibly wonderful hotel.  The
staff was so good - even going so far as valet parking my scooter for me
when it needed doing.  I used my scooter both days, paid for valet parking
and they would bring the car upstairs, help me with the scooter and return
the car.  I went off the methotrexate for a couple of weeks starting this
week (to give the antibiotic a chance) and had some wine.  All was not
gloomy.

Anyhow off to bed.  Only 8:30 but I am exhausted from everything.

Kelly