Hello Everyone, I am still here!

I finally have some significant health issues to talk about. It is a bit
difficult to sit here and type, because I am having a slew of symptoms.  But
I know you guys love me (even Rusty Clusterfuck loves me...the only reason
he bug us is because he wants to jump my bones) and have probably been
wondering what Pigmet and I have been up to.

Pigmet has crossed back through the little door he made in my office, and is
spending the last days of Indian Summer in his original universe.  He comes
back every couple of days to check on me... but he really wants to use his
"flate-able" raft on the river before it gets too low for him to do it
anymore.  I can watch what he is doing, and that is very entertaining for
me.

I myself have been having a hard time this month.  First of all (I don't
know if I mentioned this to the group before), my rheumatologist was
suddenly found to have pancreatic cancer.  It was horrible and tearjerking
to recieve a letter from him in the mail saying all this and then thanking
his patients for giving him the privilege of serving us.  It was basically
his "I'm going off to die in peace" letter.  He left his position at the
University *pronto,*  and just like Pigmet, he went through his door... to
the log cabin he and his wife built by hand, and he is fly fishing as much
as he possibly can.  I wholeheartedly support that choice he's made, but on
the other hand, he was a kingpin of the Arthritis and Rheumatology
department of the University of California at San Francisco, where I receive
my rheumatology assessment and treatment.

My case was given to another doctor, a very young woman whom I knew nothing
about. I have seen her once, back in July, and I was doing okay back then,
so she had me start tapering off my Prednisone...I was only on 7.5, but she
is adamant about using other medications rather than the Evil Pred.  So I
started tapering, a tiny bit at a time, as my body could tolerate it.

About three weeks or so ago, I started having really distressing symptoms:
Agitation, anxiety, tremors, palpitations, sleeplessness, headaches, loss of
appetite, memory loss, and significant personality changes as well!  This is
the worst "sudden something" I have had in years!

I have been checked out by two local doctors--I live a bit of a distance
from the University Medical Center, so I have "ordinary docs" right here
close to--where I live ( I am not going to mention exactly where I live,
because I am sure that Rusty will soon be outside my window, serenading me).
The shrink said there was no reason that this would be "clinical
depression," though I am sure most of you can see that a lot of these
symptoms could be just that. But he did change me to a stronger antianxiety
med that I could break in half and have extra "just in case" so I could try
to relieve the extra agitation and anxiety.  I did that, but it has not seem
to have helped.

So I had a full check up today, by a GP whom I have only seen once before. I
am sure all of you can relate to the worries of having a new doctor who is
not an expert on lupus.  My heart rate was 170 when she took it.  She
ordered and EKG, and looked at it and asked me if I had had a heart attack.
Oh my god, that is not what I needed to be asked!  I have never had a heart
attack to my knowledge... but "silent heart attacks" do happen, and I have
my share of non-specific chest pain that I pretty much ignore.

In spite of this problem, I was adamant about getting something that I
wanted: I wanted specific blood tests to try to catch "antibodies in action"
if they are in my bloodstream right now.  She kind of balked; she said she
did not know how to interpret the tests.  I said "I do. And we can consult
the rheumatologist on the results." so she did that... the only thing was,
with all this health impairment, I forgot to order... like, an ANA duh and
another key thyroid antibody test. Oh well... I have to just believe this is
the way it is meant to be.

What a day I have had, guys!  I wrote a long email to my new rheumie,
explaining everything, and even quite a bit of my lengthy history that she
does not know yet.  It was a wonderful letter, and then my mail program
crashed and I lost the letter.  I don't even want to speculate what my heart
rate was at that point.  I went back and wrote another letter--much shorter,
and got it sent off before office hours at UCSF Arthritis Center closed for
the weekend.  I was pleasantly surprised when she phoned me very shortly
after I sent the e-mail.

I then got to try to convince *her* that I am the expert on my own body, and
then try to step aside emotionally and let her be the doctor.  I thought she
was an intern or something because she is so young.  I asked her point
blank, and was relieved to find that she is a full-fledged attending
physician, who was mentored by my newly-lost rheumie, who was the professor
who has taught just about every other rheumie I know.

The data is not in yet and we just don't know what is really wrong. Could be
thyroid, but what about my heart?  I'm waiting for a cardiology consult to
be arranged. Crud.  I'm scared about the heart thing.

But after conferring with my new rheumie, I immediately went back up to my
original 7.5mg pred (here is where Mair thumbs her nose at the medical
profession in general!), hoping that it will at least help with something.

The amazing and good thing in the midst of all this is that all three of my
new docs, co-operated with me and were helpful.  That was kind of a first,
and I hope that continues.

I know you all care about me, just as I do about you.  If you respond to
this post, I am not sure I can get back to you in a timely fashion,
depending on my symptoms.  You all know that sometimes even sitting up is
hard work.  But I am here, and perhaps I can persuade Pigmet to post when he
comes back next time.

Thanks to all of you for caring; special thanks to Bill, for being my
"crying towel" and a shoulder to lean on.

Love to you all,

Mair