Hi Diane,
Frustrated and frustrated and frustrated.  Oh and add some pain and
intolerance to meds and that about says it.

I got the report from the neurologist.  He sees some funny signals at the
6-7 level, some bright spots and low density signal changes in the cervical
cord. He sees some abnormality possibly indicating a mild inflammatory
myelitis - no surgical lesions.  He figures it could be the start of
demyelinating disease or some side effect of the enbrel (which is definitely
what the rd says.)  He feels it is too late to try steroids, my rd says
steroids if not an improvement in 10 days (of course he left for the ACR
convention at day 10 so obviously I will be waiting another 7 days).  My GP
would just like to cover his head and hide and I don't blame him.

I have an appointment with the urologist Wednesday as the main problem in
the catheter etc.  I get constant spasms which I swear sometimes are more
like childbirth!  I have a uti which the gp was hesitant to treat in case I
developed a second yeast infection within a week and blocked the catheter
again.  The catheter only works properly if I lay down - doesn't draw enough
out if I am sitting or walking.  Therefore about every 2 hours or so I go
lie down to basically empty my bladder.  Can you say hell on my interstitial
Cystitis - so I am back having uracyst again for that.  The catheter has
fallen out once, lost all the water in the balloon once, and I have a fair
amount of tissue and blood that frequently is discharged.  To say the
bladder is irritated is a good word.  Of course there have been funny times
too - like the time I had a new leg bag that was not closed properly and it
leaked into my shoe and sock (luckily not too much as I was sitting) as I
was trying to sell quilts at our quilt show.  Or the time the dog lied on my
bag this weekend and disconnected the bag from the catheter during dinner
with my son and his girlfriend.  My pants were wet and with the lack of
sensation I couldn't feel it right away.  I think my words were "piss".
Which described it.  My son hopped up from the table and mopped the floor
very calmly and I got changed and was back in time to eat dessert.  Nothing
is boring around here. What I am asking is if I can catherize myself every
few hours instead of the bag.  I know it is done and apparently the
infection rate is the same.

No new arthritis meds until at least the 30th when my next appointment with
my rd is. My physio took away the wheelchair unless someone is pushing as it
was wrecking my wrists and shoulders.

The good news is I am working very hard at the physio and now use a walker
and am slowly walking without it holding onto whatever is near.  It is hard,
and hurts and is tiring but I am getting there.  The neuralgic response is
still strong though so no ultrasounds or anything from the physiotherapist.
She is amazed at how well I am starting to come back in strength though.  Of
course she also gave me a lecture on resting and giving it a chance to heal.
That is hard. I am working at keeping the foot flat and learning how to tap
my toes.  Can you say music?  It is painful but I am getting there.

So good and bad but mainly frustrating.  I got rid of the clomazapam as it
was making me stoned all the time but kept the lyrica and it seems to help a
bit.  The demerol at night is the answer though.  One clomazapam gave me 24
hours of acting like I was totally stoned - my friends weren't impressed.

Anyhow - willl wait and see what my rd says from the conference.  He was
talking to people there.  I told Dr. Doc his name and where he was from so
who knows maybe they will meet.

Thanks for asking Diane -  I am still here - just barely holding on though.
Lots of tears and frustration and this catheter and bowel problem is exactly
that - major!

Kelly